indian journal of medical ethics

ISSN 0974 - 8466 (print) ISSN 0975 - 5691 (online)

INDIAN JOURNAL OF MEDIC AL ETHICS Vol IX No 3 July-September 2012 (incorporating Issues in Medical Ethics, cumulative Vol XX No 3) www.ijme.in

THEME ISSUE: MEDICAL HUMANITIES FOR INDIA Healthcare workers in conflict zones CDSCO report: the drug industry is king Effects of sanctions on public health in Syria Book review: When doctors become patients

INDIAN JOURNAL OF MEDICAL ETHICS VOL IX NO 3 JULY-SEPTEMBER 2012

(incorporating Issues in Medical Ethics, cumulative Vol XX No 3)

Editor Emeritus Sunil K Pandya Editor Amar Jesani Consulting Editor Sandhya Srinivasan Editorial Coordinator Meenakshi D’Cruz Editorial Staff Panchalee Tamulee Editorial Board Divya Bhagianadh, Mumbai Mala Ramanathan, Thiruvananthapuram Nobhojit Roy, Mumbai Prabha Chandra, Bangalore Prathap Tharyan, Vellore Sanjay Nagral, Mumbai Sanjay A Pai, Bangalore Editorial Advisory Board Amit Sengupta, Delhi Chhanda Chakraborti, IIT Kharagpur Deepa Venkatachalam, Delhi Dhanwanti Nayak, Manipal G D Ravindran, Bangalore George Thomas, Chennai Neha Madhiwalla, Mumbai Parthasarathi Mondal, Mumbai Sridevi Seetharam, Mysore Sujith Chandy, Vellore Suneeta Krishnan, Bangalore Vasantha Muthuswamy, Delhi Vikram Patel, Goa Vinay Chandran, Bangalore International Advisory Board Aamir Jafarey, Pakistan Aasim Ahmad, Pakistan Abha Saxena, Switzerland Aliya Naheed, Bangladesh Angus Dawson, UK Antony Zwi, Australia Anurag Bhargava, Canada Bashir Mamdani, USA Bebe Loff, Australia Fatima Castillo, Phillipines Fiona Miller, Canada Helen Sheehan, USA Jacob Leveridge, UK Julian Sheather, UK Richard Cash, USA Ruth Macklin, USA Sisira Siribaddana, Sri Lanka Solomon Benatar, South Africa Administration and subscription Panchalee Tamulee [email protected] Edit correspondence: [email protected] Subscription Rates Period

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Nurturing empathy The recent focus in the media has been on doctors involved in varieties of wrongdoing: sex determination tests and illegal abortions, illegal clinical trials on innocent patients, allowing untrained attendants to do their work criminal negligence in the disposal of medical waste, and the list goes on. Can healthcare professionals argue that they are no different from others in an increasingly corrupt society? No, they are expected to be dedicated, caring, and trustworthy, no matter what social environment they live in. It is an occupational hazard, based on the simple fact that medicine is a matter of life and death. The guilty must be punished. However, the challenge is to nurture ethical values in members of the profession. One approach is to introduce the medical humanities into medical education, to open up the mind to imagination and empathy, to enable one to enter the skin of the “other”, the patient, and feel as she or he feels. This issue of IJME has medical humanities as its theme and its vital importance is explored from the viewpoints of students, clinicians and teachers, and coordinated by our guest editor, Radha Ramaswamy. Other articles in this issue cover a range of subjects. Public health professionals report on the devastation caused by sanctions in Syria. An editorial tackles the deaths of healthcare workers caught in the cross fire between opposing forces in war zones. Two studies look at the critical question of informed consent, one among patients in a service-oriented hospital and the other among nurses participating in a study, and finds lacunae in both settings. Another study explores the inclination of nurses to support their patients, even from neglect by other care givers, and asserts that institutions must support nurses who advocate for their patients. A comment refutes the charges against a doctor as false, challenging the tarnishing of a reputation based on insufficient investigation. Others analyse the inevitable compromises made while framing mental health laws, or when letting go at the end of life.

The Indian Journal of Medical Ethics (formerly Issues in Medical Ethics) is a platform for discussion on healthcare ethics, with special reference to the problems of developing countries such as India. It hopes to involve all cadres of, and beneficiaries from, this system, and strengthen the hands of those with ethical values and concern for the underprivileged. The Journal is owned and published by the Forum for Medical Ethics Society, a not-for-profit, voluntary organisation. The FMES was born out of an effort by a group of concerned doctors to focus attention on the need for ethical norms and practices in health care. Contributions to the journal, in the form of original papers, research findings, experiences in the field, case studies, debates, news and views on medical ethics, are welcome. All submissions must be in English and are subject to editorial review. Contributors are requested to refer to the detailed guidelines for submission available on the journal website, www.ijme.in Printed and published by Sanjay Nagral on behalf of the Forum for Medical Ethics Society Printed at Vibha Offset, Royal Industrial Estate, Wadala, Mumbai 400 031 Published at FMES, 0-18, ‘Bhavna’, Veer Savarkar Marg Prabhadevi, Mumbai 400 025 Editor: Amar Jesani

Indian Journal of Medical Ethics Vol IX No 3 July - September 2012

Contents

Indian Journal of Medical Ethics Vol IX No 3, July-September 2012 (incorporating Issues in Medical Ethics, cumulative Vol XX No 3)

EDITORIALS

Healthcare workers in conflict zones– fright or flight? .........................................................................................................................142 Samrat Sinha, Nobhojit Roy “Medical humanities” for India................................................................................................................................................................144 Radha Ramaswamy Standing committee report on CDSCO: hard facts confirm an open secret.........................................................................................148 Sandhya Srinivasan, Amar Jesani

REPORT

Syria: Public health achievements and the effect of sanctions............................................................................................................151 Waleed Al Faisal, Kasturi Sen, Yaser Al Saleh

DISCUSSION: MEDICAL HUMANITIES

The patient - doctor relationship.............................................................................................................................................................156 Usha Rajaram My recent experiences as a patient.........................................................................................................................................................158 Sunil K Pandya One flu over the doctor’s nest .................................................................................................................................................................161 Kapil Rangan, Bhargavi Pawar An undergraduate student’s view of the medical humanities..............................................................................................................161 Jayesh Vira Medical humanities: a resident doctor’s perspective............................................................................................................................162 Anvita Pauranik Medical humanities ... almost..................................................................................................................................................................164 Neha Dangayach Whither medical humanities?..................................................................................................................................................................166 Navjeevan Singh Integrating medical education with societal needs ..............................................................................................................................169 R Krishna Kumar Embracing the unknown: introducing medical humanities into the undergraduate medical curriculum in India..........................174 Radha Ramaswamy Healthcare the Ayurvedic way ................................................................................................................................................................177 Rama Jayasundar

ARTICLES

How ‘informed’ is informed consent? Findings from a study in South India.......................................................................................180 Shuba Kumar, Rani Mohanraj, Anuradha Rose, MJ Paul, George Thomas Informed consent among nursing students participating in biomedical research.............................................................................186 Anupama Nambiar, D J Christopher , Joy Mammen, Thambu David, Gagandeep Kang, Shirley David Patient advocacy practice among Iranian nurses..................................................................................................................................190 Reza Negarandeh, Nahid Dehghan Nayeri

COMMENTS

Some ethical tradeoffs in mental health legislation and practice........................................................................................................196 Nikhil Govind Tarnishing reputations: the downside of medical activism..................................................................................................................200 Sunil K Pandya Concepts and debates in end-of-life care...............................................................................................................................................202 Abhijit Chakravarty, Pawan Kapoor

ETHICS OF ETHICS COMMITTEES

ICMR’s Ethical guidelines for biomedical research on human participants: need for clarification..................................................207 N Ananthakrishnan, Shanthi AK

BOOK REVIEWS

Exposing the thin line...............................................................................................................................................................................210 M R Maithreyi Organ transplantation: bridging the technology-ethics gap................................................................................................................211 Sreekumar Nellickappilly A model for holistic rural health..............................................................................................................................................................212 Manu Kothari FROM THE PRESS................................................................................................................................................................................................................................. 154 FROM OTHER JOURNALS.................................................................................................................................................................................................................. 214 LETTERS................................................................................................................................................................................................................................................. 216 ANNOUNCEMENT: NBC 4.................................................................................................................................................................................................................. 221

Cover: Original painting ‘“Clinic” by kind courtesy of the artist, Sudhir Patwardhan [ 141 ]

Indian Journal of Medical Ethics Vol IX No 3 July-September 2012

EditorialS

Healthcare workers in conflict zones– fright or flight? Samrat Sinha1, Nobhojit Roy2 1 Assistant Professor and Assistant Director, Centre for Study of Political Violence, Jindal School of International Affairs, OP Jindal Global University, Haryana 131 002 INDIA e-mail: [email protected] 2 Visiting Professor, Jamsetji Tata Centre for Disaster Management, Tata Institute of Social Sciences, VN PuravMarg, Mumbai 400 088 INDIA e-mail: [email protected]

The noble intention of helping fellow human beings can have consequences that are both risky and life-threatening. Increasingly, humanitarian health workers and the healthcare system in conflict zones are themselves becoming targets of assault. On January 5, 2012, Dr Khalil Rashid Dale, an International Committee of the Red Cross (ICRC) delegate working as health programme manager, was abducted by unknown armed men while returning to his residence in Quetta, the capital of Baluchistan province in Pakistan. While the perpetrators of the abduction maintained intermittent contact with various authorities, the beheaded body of the kidnapped official was found in an apple orchard on April 29, 2012. It is now being revealed that the motivation for the abduction and killing could be the ICRC’s refusal to pay a ransom. Declining to pay a ransom for abducted staff is consistent with the ICRC’s security policy. Of special significance is the fact that the perpetrators of the crime were aware of the credentials of the doctor, as he was travelling in a clearly marked ICRC vehicle (1). Attacks on humanitarian healthcare providers are a less understood aspect of conflict, primarily because they constitute a smaller proportion of the overall number of violent events. The consequences of these attacks are extremely drastic and disproportionate in their impact. For instance, in January 2012, Medicins Sans Frontieres (MSF) closed down two major medical centres in the Hodan district of Mogadishu, the capital of Somalia, following the killing of two staff members. The two 120-bed medical facilities were the largest of MSF’s 13 projects in Somalia. Their closure reduces the organisation’s presence in Mogadishu by half. Moreover, according to MSF the facilities served an area with a population of 200,000 and had, since August 2011, treated close to 12,000 malnourished children, and provided measles vaccination or treatment to another 68,000 patients(2). In the Sudan, MSF ran a primary healthcare centre in the town of Pibor in Jonglei state, and from there established two smaller outreach clinics in the more remote areas of Lekwongole and Gumuruk, which are only accessible by plane or boat during the rainy season. In July 2010, an armed group entered the Gumuruk clinic and stole boxes of the ready-to-use therapeutic food with which MSF treats severely malnourished children. Three days later, more ready-to-use therapeutic food was stolen along with medical equipment. Then, later in the month, four MSF staff members travelling by boat from Pibor to Gumuruk were robbed by armed men. Following these three separate security incidents the organisation suspended all activities in Gumuruk and Jonglei state. Apart from a small ministry of health facility in Pibor town, MSF was the only primary healthcare provider in this part of Jonglei state, which is home to around 150,000 people (3). Already, a major consequence of the killing of Dr Khalil Rashid Dale has been the suspension of the ICRC’s health projects in Balochistan and the closure of a rehabilitation centre for the physically challenged, functioning out of the Christian Hospital in Quetta (1). However, non-state actors are not the only perpetrators of violence against healthcare providers. States themselves have engaged in numerous acts that obstruct the provision of healthcare. In May 2009, the Sri Lankan army attacked the Mullaivaikal hospital three times in the space of a week, killing more than 91 persons, including an ICRC worker (4). In June 2011, a police official in Chhattisgarh accused the MSF and ICRC of “facilitating” the medical treatment of Maoist insurgents (5).

The limits of protection for healthcare provision The current state of knowledge in the field of “conflict studies” is not able to discern the motivations of armed actors in conflict zones. Increasingly, it is being found that the intentional targeting of civilians and civilian institutions is becoming more pervasive. The shifting burden of conflict onto civilians and civilian institutions is an area of concern, especially when we seek to understand the constraints on healthcare service delivery in conflict zones and “fragile states.” Given the diversity of security challenges facing healthcare provision, there is an absence of any cohesive body of international law that exclusively provides legal protection for healthcare provision in situations of conflict. The formal protections for healthcare provision arise from the four Geneva Conventions of 1949, the two Additional Protocols of 1977 and the third Additional Protocol of 2005. This body of international humanitarian law (IHL) essentially provides a template of conduct but does [ 142 ]


not outlaw the act of war. Rather, it provides a set of norms or a “protection framework” to be adhered to by the parties involved in the conflict. Firstly, medical assistance is viewed as a neutral activity, which should be universally accessible to the wounded, sick and prisoners of war. Second, these standards “impose the duty on warring parties to not interfere with medical care for wounded or sick combatants and civilians, and not attack, threaten, or impede medical functions” (6). Moreover, “warring parties must also permit medical functions to have access to the sick and wounded, refrain from using medical facilities for military purposes, and spare patients from violence, intimidation, or harassment (6). Lastly, “the parties [must] respect principles of medical ethics; they (the norms) forbid the punishment of medical personnel for adherence to ethical standards of the profession, and outlaw use of compulsion against health providers to engage in acts that are inconsistent with medical ethics”(6). However, despite the existence of a normative framework enshrined in the Geneva Conventions, healthcare is under threat, because of the limits to which the norm is internalised by the perpetrators of violent acts. There are certain fundamental normative assumptions of IHL that are being challenged by the actual conduct of contemporary warfare. As a body of law, international humanitarian law essentially evolved at a time when “states” were seen as the primary stakeholders in the conduct of war. Even though the Addition Protocol II (1977) is applicable to “Non-International Armed Conflict” (NIAC), it still envisages this type of conflict as military action which takes “place in the territory of a High Contracting Party between its armed forces and dissident armed forces or other organised armed groups which, under responsible command, exercise such control over a part of its territory as to enable them to carry out sustained and concerted military operations” (7). The last part of the clause assumes, for instance, that once these conditions are met, the organised armed group will also be in a position to “implement” the Protocol. However, in situations of state failure, the conditions of NIAC rarely fit such categorisation. It is extremely difficult to determine, especially in the case of “organised armed groups” the degree of “responsible command,” the extent to which they exercise “control over territory” and their ability to “carry out sustained and concerted military operations.” In many cases armed actors, whether state or non-state, do not necessarily have fixed hierarchical organisational structures; nor do they actually control discernible swathes of territory. This leads us to the issue of implementation of IHL in conflict zones. In most instances, conflicts lead to breakdowns in existing legal structures and ethical principles. Adherence to international law by armed actors is extremely difficult to enforce in the absence of any centralised governing authority, this being a hallmark of contemporary conflict processes. For instance in 2010, the “internationally recognised” transitional government of Somalia officially controlled a territory of eight square miles in the country, which was limited to a part of the city of Mogadishu (8). The rest of the city and the country were considered disputed territory, governed by warlords, militias and rebel groups. Another aspect of protection is that IHL only provides standards of conduct for warring parties. There is no formal enforcement mechanism by which members of armed groups or state armed forces can be held criminally accountable for their actions. While IHL can provide the basis of classifying certain acts as “war crimes” for future criminal trials, the process of actually trying individuals for “war crimes” is a distinct political process which requires the creation of international tribunals, the formulation of stringent rules of evidence and, above all, international commitment to the sustenance of specific war trials.

Existing gaps in knowledge It would not be correct to place the onus of protection exclusively on the warring parties. While the focus of this editorial has been on international humanitarian healthcare provision, there is virtually an absence of any knowledge on the intimidation faced by local healthcare providers (including local staff of international organisations) who actually account for a larger share of casualties compared to expatriates (9). The fact that local health workers are at the forefront of collapsing health systems requires serious consideration. Moreover, little is known about the resilience of local health providers in sustaining the integrity of medical care provision in the face of intimidation, polarised political contexts and acute psychological stresses. In most cases, local health workers do not have the option of exiting their posts, despite the deaths of or injury to their colleagues. This lack of awareness arises primarily from a distorted focus on the large international humanitarian health service providers. The dearth of knowledge of national health systems in conflict zones is also complemented by an absence of understanding of the conduct of humanitarian health providers themselves. In situations where there are no overarching governance structures, there is a need to understand the forms of regulation that ensure that expatriate medical practitioners maintain ethical standards of practice. Emanating from this is also the question of the ethical aspect of international humanitarian health agencies closing down entire programmes due to security threats. Again, very little is known about the manner in which populations can become dependent on external medical assistance and the impact on local societal structures of withdrawal of medical aid. Further, it is not known whether local health systems become resilient or whether they tend to regress after such withdrawals. Discussions on medical humanitarian assistance thus require a debate on the nature of accountability in the field of humanitarian healthcare. Who will provide these life-saving services to the civilian populations once the agencies leave, is an open question. [ 143 ]


Conclusion The increasing use of force against healthcare facilities and medical personnel is an issue that requires systematic research. The inescapable aspect of armed conflict is that there is a clear spillover of the “political” dimension into such a fundamentally critical and non-aligned arena as health provision. The fact that modern day armed groups and state actors do not conform to the standards and ethics enshrined in IHL with regard to protection of healthcare provision is echoed in the findings of an ICRC report titled Healthcare in danger. The report concludes that the “means to address this problem do not lie within the healthcare community; they lie first and foremost in the domain of law and politics, in humanitarian dialogue, and in the adoption of proper procedures by State armed forces” (10). However, attributing the solution to the political domain is not enough, as it dissociates the issue of humanitarian healthcare from its own ethical responsibilities in conflict zones. Seen from the lens of civilian protection, the onus of the protection of healthcare facilities must not be limited to state and non-state actors. Rather, serious ethical reflection on the provision of humanitarian healthcare is required, which also takes into account the responsibility of aid agencies towards vulnerable populations. References 1. Shahid S. Body of kidnapped ICRC official found. Dawn [Internet]. 2012 Apr 30[cited 2012 Jul 3]; From the newspaper:[about 4 screens].Available from: http://dawn.com/2012/04/30/body-of-kidnapped-icrc-official-found 2. MSF: Medicins Sans Frontieres [Internet]. New York: MSF; c2012. MSF closes two large medical centers in Mogadishu after killings of staff; 2012 Jan 19[cited 2012 Jul 3];[about 3 screens]. Available from: http://www.doctorswithoutborders.org/press/release.cfm?id=5733&cat=press-release 3. MSF: Medicins Sans Frontieres [Internet]. New York: MSF; c2012. Sudan: security incidents force MSF to suspend activities in Gumuruk; 2010 Jul 30 [cited 2012 Jul 3]; [about 3 screens]. Available from: http://www.doctorswithoutborders.org/news/article.cfm?id=4628&cat=field-news 4. Al Jazeera [Internet]. [place unknown]: Al Jazeera; c2009. Sri Lanka war hospital ‘hit again’;2009 May 13[cited 2012 Jul 3]; [about 5 screens]. Available from: http://www.aljazeera.com/news/asia/2009/05/20095131040721771.html 5. BBC News South Asia [Internet]. UK: BBC; c2012. Bagchi S. Red Cross and MSF accused of helping India Maoists;. 2011Jan 21[cited 2012 Jul 3];[about 4 screens]. Available from: http://www.bbc.co.uk/news/world-south-asia-12247693 6. Rubenstein LS. Bittle M. Responsibility for protection of medical workers and facilities in armed conflict. Lancet [Internet].2010 Jan 23[cited 2012 Jul 3];375:329-40. Available from: http://www.jhsph.edu/sebin/y/h/Rubenstein_ProtectionofMedicalWorkersInConflict_Lancet2010.pdf 7. ICRC: International Committee of the Red Cross [Internet]. Geneva: ICRC;c2005. Protocol Additional to the Geneva Conventions of 12 August 1949, and relating to the Protection of Victims of Non-International Armed Conflicts (Protocol II,8 June 1977); 1977 Jun 8[cited 2012 Jul 3];8p. Available from: http:// www.icrc.org/ihl.nsf/WebART/475-760004?OpenDocument 8. Dickinson E. How much turf does the Somali government really control? Foreign Policy [Internet]. 2010 Sep 23[cited 2012 Jul 3]. Available from: http:// www.foreignpolicy.com/articles/2010/09/23/how_much_turf_does_the_somali_government_really_control 9. Stoddard A, Harmer A, DiDomenico V. Providing aid in insecure environments: 2009 Update trends in violence against aid workers and the operational response. HPG Policy Brief 34[Internet], 2009 Apr[cited 2012 May 4]. p 3.Available from: http://www.odi.org.uk/resources/docs/4243.pdf 10. ICRC: International Committee of the Red Cross[Internet]. Geneva: ICRC; c2005. A sixteen country study: healthcare in danger;2011 Jul 3[cited 2012 Jul 3];19p. Available from: http://www.icrc.org/eng/assets/files/reports/4073-002-16-country-study.pdf

“Medical humanities” for India Radha Ramaswamy Centre for Community Dialogue and Change, A-6, Grasmere Apartments, Osborne Road, Bangalore 560 042 INDIA e-mail: [email protected]

Is there a problem? A 21-year-old senior medical student is standing at the bedside of a patient in a general ward. The intern has been told that it is important to pick up the patient’s hand, and look into his face, before asking any questions. He has seen his teacher do this. He moves his hand stiffly, watches it go towards the patient’s hand, and pause, and in those few seconds, realises this is not going to work. He gives up, and asks: “Tell me what the problem is.” The young men and women who enter medical colleges in India are of above average intelligence, many are exceptionally bright, and all yearn to do good. This is largely true, even though our entrance exams do not really test intelligence or aptitude, and these young people stopped looking beyond physics-chemistry-biology at the age of 13, becoming little more than marks-scoring machines. Miraculously, many of them survive these battles with their intelligence intact and clinging still to their desire to be of service. The battle scars are there -- fear lies beneath the “cool”, “don’t care” surface. There are countless doubts. Am I in the right place? Am I good enough? But isn’t this wrong? What should I do? Not addressing these questions can be dangerous: to the individual medical student whose doubts gradually vanish, leaving him numb, or worse, indifferent; to the patient who has to confront an emotionally stunted doctor; to the national healthcare scene dominated by people who learned to leave their humanity behind years ago. [ 144 ]


Medical education and patient care The deteriorating quality of medical education and patient care in the country has been the cause of much concern and discussion, both within the medical profession and outside (1-3). One of the chief causes of this is being identified as the jettisoning of all humanities and arts courses from curricula for students preparing for professional courses – our own adaptation of CP Snow’s ‘two cultures’ phenomenon, the divide between scientists and literary intellectuals (4). ‘Infuse joy into learning’, say educationists, in response to this situation and ‘bring genuine human interaction into the classroom’ (5). Business schools are introducing managers to literary texts so that they may learn to appreciate metaphorical language and become more sensitive to hidden meanings in communication. In medicine, an increasing body of public opinion now considers the doctor’s emotional, psychological, even spiritual wellbeing to be almost as important as his clinical competence. Recognising the urgent need for reforms in medical education, the Medical Council of India has, in a recent document, proposed significant changes to the MBBS curriculum(6). Perhaps for the first time, there is a mention of medical humanities in the course components, as well as a direction to medical colleges to appoint faculty who are experts in these non-medical disciplines. In the light of this recent MCI initiative, this special issue of the IJME is timely. The collection of articles here represents current thinking on the subject in the country, and will help not only to focus attention on the need to introduce MH, but also to highlight critical pedagogical issues in its implementation.

Why this theme Medical humanities (MH) is projected to be the answer to many of the serious, unresolved issues in medical practice. Before we hurry up and install it in our medical curricula, we need to see the shape of the beast more clearly. Loosely described, MH is the name generally given to an interdisciplinary programme, drawing largely on the humanities and the arts, that aims to address the emotional, and psychological aspects of medical training not taken care of by the standard undergraduate medical curriculum (7-9). As a formal field of inquiry and as a part of the medical curriculum, MH has been around for quite a while outside India, and in a few centres scattered across India in recent years(10). Perhaps following the lead of the US, and the remarkably useful databases, MH courses have been largely focused on the use of literature and the arts, including drama. While a wealth of literature is available on MH, the challenge for us in India will be to evolve a model that is India-specific, shaped by our socio-economic and cultural realities and the diversity of needs of our population. We hope that the writings in this issue will both guide us as we begin exploring this unfamiliar territory and help us move in fresh and new directions. Some of the articles in this issue may contain generalisations that may appear unoriginal, even commonplace. Yes, we are all aware of the commercialisation of medical practice, the increasing dependence on technology and invisibilisation of the patient as a human being, and how the medical curriculum does not prepare the student for the dilemmas or the uncertainties built into the experience of being a doctor. The significant thing – and this is no mean significance – is that it is medical students and doctors who are saying these things, and for the first time openly, in a special issue on the theme in medical literature in India.

In this issue We begin this issue with patient narratives. Put the patient first, says Usha Rajaram, who believes that true healing, especially in cases of serious and long term illnesses, can only happen when the doctor acknowledges the patient’s need to seek emotional, and psychological support from the doctor. Sunil Pandya narrates his experiences of the shift from being a neurosurgeon to a patient, and his newfound perspective on illness, treatment, and hospitalisation. The voices of medical students are next. The first piece by Jayesh Vira is a plea for help, underlining the undergraduate medical student’s struggles to cope with the magnitude of the changes in his life as he enters medical college, and the need to revamp the curriculum before introducing MH. Anvita Pauranik testifies to how medical education actually contributes to the gradual erosion of empathy in students, and argues that a course based on the humanities will probably help, if faculty is suitably trained. Neha Dangayach muses on the contribution of teachers, friends and patients to her evolution as a resident but concludes that a formal course in the humanities can help medical students evolve into sensitive doctors. These are voices from the ground. They need to ring in our ears as we ponder curricular changes. The next set of four articles addresses the big question: Do we need a fundamental change in perspective or just additions to the current syllabus? Navjeevan Singh graphically describes the oppressive systems suffocating the medical student, and suggests how some of the challenges to introducing humanities-based programmes may be faced. Krishnakumar offers suggestions for remedying the tragic disconnect between the realities of the healthcare needs in the country and the professional orientation that students receive during their medical education Urging doctors to embrace the spirit of MH - of a bold inquiry into themselves and their patients - Radha Ramaswamy makes a case for a flexible and creative approach to MH. Finally, Rama Jayasundar [ 145 ]


describes the Ayurvedic approach to patient care, which integrates, instead of fragmenting, the patient, and emphasises wellness over the cure of an illness.

In forthcoming issues Future articles on this theme in IJME include: accounts of experiments in MH from four different colleges in India and Nepal that vary in approach, content and methodology, providing a rich ground for creative and fruitful discussion; doctors’ narratives about coping with doubts, guilt, and feelings of incompetence; a guide to curricular issues, and the MCI’s thoughts on introducing an MH programme in the undergraduate medical curriculum.

Preparing for MH Medical education is the site where we see tremendous possibility for change. We need many and diverse voices to speak to us, so that we may see what resonates for us. A whole range of issues will appear before us as we start our journey on the road to MH. From large and abstract questions such as ‘Is a happier doctor a better doctor?’, or ‘ Is kindness as important in a doctor as clinical competence?’ to decisions about the nitty-gritty of implementation, about making MH courses voluntary or mandatory, about not overloading the already crowded curriculum, and finding suitable resource persons. We need to draw on a wide array of disciplines outside of medicine, and identify the inputs needed to challenge students as well as excite and interest them. The courses need to be relevant to their development as medical professionals, and this relevance needs to be identified as broadly and deeply as possible. For example, while choosing literary texts, what kinds of texts do we look for? Is it necessary to identify texts that are directly about doctors or patients or about illness? This is the more popular, instrumentalist approach to MH. But more and more medical educators are arguing that all good literature is useful because it keeps the imagination alive (11). When a doctor faces a patient, he often needs to makes an imaginative leap into the other’s thoughts and feelings. The same imagination helps him examine places within himself where his attitudes and beliefs lie, hidden even from himself. Lest we slip into the comfortable slotting of MH as ‘the soft skills’, there is a growing body of scholarship on India in the social sciences and humanities that MH needs to draw upon (12). This will provide a valuable perspective, provide inputs that will help medical students approach the ambiguities and dilemmas of their profession in a more informed way, and make them reflective practitioners. MH courses can be designed so they also provide opportunities for students to learn from their peers, patients, caregivers and families. The classes need to be enjoyable, provide a friendly environment for exchange of ideas and debates, and be a safe space for students to express personal views. A large hall, empty of furniture, where everyone leaves their shoes outside, and sits on the floor in a circle, can dramatically alter the nature of the communication in the group. Small group discussions rather than lectures, workshops, projects and presentations, reflection time, and regular oral and written feedback, could be useful features of an MH course (13). The approach, always, has to be flexible, and non judgemental. For example, imagine a formulaic communication skills course, where Step 2 is: ‘Take the patient’s hand in your own.’ This is no doubt a profoundly meaningful ritual for patient and healer (14). Our hypothetical student in the scene described in the opening paragraph of this editorial, might however ask: “What if it doesn’t come naturally to me, and I feel awkward picking up the patient’s hand?”To condemn such a response as ‘lack of empathy’ would be as wrong as any attempt to ‘teach’ it as if it were a communication strategy to be picked up mechanically. Lastly, how does one handle assessment in such courses? Even after inputs from sociology, economics, public health and ethics, is it possible for a student to give the ‘correct answer’ to a question on abortion? The hard part for medical educators, and students, will be to let go of the need for Yes/No answers. The standard kinds of assessments that test factual knowledge will have to be abandoned, and so will impact studies to measure the effectiveness of such programmes. Does this mean we cannot know whether these programmes are benefitting us at all? Not true. For, even though we may not be able to define or measure kindness, we all recognise it when we see it. Through the articles in this and subsequent issues of this journal we hope to generate questions and discussions such as these, that will help us see MH for what it can truly be - beyond issues of medical and professional ethics, and beyond prosaically learnt communication skills.

What next In August, when the new term begins, let’s see colleges take those first bold steps. [ 146 ]


Call a meeting of everyone - hear students and faculty speak their minds freely on what they struggle with, on changes they would like to see. Every voice counts. Who’s passionate about change? Who reads beyond medicine? Who has friends in the humanities departments, or hobbies they would like to bring into the classroom? Form a team. Let ideas come from everywhere; hierarchies can kill initiative. Draw up a programme for the year. But let nothing be frozen. Let Imagination, Flexibility and Fun be the key words. Announce the first module, talk, screening, workshop. Take feedback always. Call a meeting every month, after every term, and take stock; be ready to make mid course corrections, if necessary. Let’s try something different from the standard medical education programme. And, in July 2013, let’s all meet to share our MH stories. Taking the first step, without knowing exactly what awaits us, is perhaps the most difficult. Maybe the real challenge is that medicine is being asked to open itself to an ‘outsider’ gaze. But is there really an ‘outsider’ here? Are we not united by a common purpose, beyond disciplinary boundaries? MH simply asks that we reclaim the vision we once had, listen to the voice that whispers in our ears. As the founder of the Centre for Community Dialogue and Change, I conduct workshops in Theatre of the Oppressed, a popular community education tool, as part of the medical humanities programme in colleges.

Acknowledgements I am deeply grateful to Dr Amar Jesani and Dr Sunil Pandya for giving me an opportunity to guest edit this special issue of IJME on Medical Humanities. It has been an amazing and invaluable journey. I am grateful to all the authors who so readily responded to my request for articles, to all the reviewers, and to Meenakshi D’Cruz and Sandhya Srinivasan at the IJME for their friendship and editorial support. I am grateful to my family, who greeted this new madness with their usual nonchalance, to the many friends who gave generously of their time and ideas, and finally, to all the wonderful people out there ‘doing’ MH, and writing about it, from whom I have learnt and continue to learn so much. References 1. Medical Council of India. Vision 2015 [Internet]. New Delhi: MCI; 2011 Mar [cited 2012 Jun 27]. Available from: http://www.mciindia.org/tools/ announcement/MCI_booklet.pdf 2. Supe AN, Burdick W. Challenges in medical education in India. Acad Med. 2006 Dec;81(12): 1076-80. 3. Zachariah P. Rethinking medical education in India. The Hindu [Internet]. 2009 Sep 9[cited 2012 Jun 27];Opinion: [about 3 screens]. Available from: http:// www.hindu.com/2009/09/09/stories/2009090954430900.htm 4. Snow CP. The Rede Lecture1959 [Internet]. New York: Cambridge University Press;1961 [cited 2012 Jul 4]. Available from: http://s-f-walker.org.uk/ pubsebooks/2cultures/Rede-lecture-2-cultures.pdf 5. Robinson K. Imagination and empathy. Dalai Lama Center’s Speakers series event, Educating the heart and mind [Internet]. 2011 Nov 21[cited 2012 Jun 27]. Available from: http://www.youtube.com/watch?v=Yu2zcmb3yAQ&feature=relmfu 6. Medical Council of India. Regulations on Graduate Medical Education 2012 - Medical Council of India [Internet]. New Delhi: MCI; 2012[cited 2012 Jul 7] Available from: http://www.mciindia.org/tools/announcement/Revised_GME_2012.pdf 7. Shapiro J. A sampling of the medical humanities. J Learning Arts [Internet]. 2006[cited 2012 Jun 27];2(1):Article 1. Available from: http://escholarship. org/uc/item/58b5h3h9#page-10 8. Shapiro J. Walking a mile in their patients’ shoes: empathy and othering in medical students’ education. Philos Ethics Humanit Med. 2008 Mar;3:10. 9. Kirklin D. The Centre for Medical Humanities, Royal Free and University College Medical School, London, England. Acad Med. 2003 Oct;78(10):1048-53. 10. Gupta R, Singh S, Kotru M. Reaching people through medical humanities-an initiative. J Educ Eval Health Prof. 2011;8:5. Epub 2011 May 20. Published online 2011 May 20. http://dx.doi.org/10.3352/jeehp.2011.8.5 [cited 2012 Jun 27]. Available from: http://jeehp.org/Synapse/Data/PDFData/0144JEEHP/ jeehp-8-5.pdf 11. Verghese A. The Centre for Medical Humanities and Ethics: Q and A with Abraham Verghese [Internet].[date unknown] [cited 2012 Jun 27]. Available from: http://www.abrahamverghese.com/images/Q-A%20Humanities%20in%20Medical%20Education.pdf 12. Zachariah A, Srivatsan R, Tharu S for CMC-Anveshi Collective Towards a critical medical practice: reflections on the dilemmas of medical culture today. Hyderabad: Orient Blackswan; 2010. 13. Shankar PR, Piryani RM, Thapa TP, Karki BMS. Our experiences with ‘Sparshanam’, a medical humanities module for medical students at KIST Medical College, Nepal. J Clin Diag Res [Internet]. 2010 Feb[cited 2012 Jun 27];4(1): 2158-62. Available from: http://www.jcdr.net/article_abstract.asp?issn=0973709x&year=2010&month=February&volume=4&issue=1&page=2158-2162&id=642 14. Ted- Ideas worth spreading [Internet]. [place unknown]: Ted; c2012. Abraham Verghese- A doctor’s touch; 2011 Sep [cited 2012 Jun 27]. Available from: www.ted.com/talks/abraham_verghese_a_doctor_s_touch.html [ 147 ]


Standing committee report on CDSCO: hard facts confirm an open secret Sandhya Srinivasan1, Amar Jesani 2 1 Independent journalist, 8 Seadoll, 54 Chimbai Road, Bandra West, Mumbai 400 050 e-mail: [email protected] 2 Trustee, Anusandhan Trust, Sai Ashray, Aaram Society Road, Vakola, Santacruz East, Mumbai 400 055 INDIA e-mail: [email protected]

You would think the mandate of the Central Drugs Standard Control Organisation (CDSCO) is to ensure that medicines on the Indian market are safe, effective, and necessary for public health. But the government thinks differently. According to a statement by the ministry to the Department Related Standing Committee on Health and Family Welfare (1), the CDSCO’s mission as stated in the committee’s report, is to “meet the aspirations…. demands and requirements of the pharmaceutical industry”. (1:8). It is no wonder, then, that this industry can do just about anything it wants, at the cost of people’s health. With the 59th report of this committee on the functioning of the CDSCO, for the first time, the internal workings of the office are laid bare for the public – with documentary proof of wrongdoing. The writers have minced no words in their indictment of the Drugs Controller General of India’s (DCGI) office, their conclusions supported by a clearly articulated methodology and hard data. The report confirms what everyone knows: the regulatory body and a coterie of medical ‘experts’ are bounden to industry, and the approval process is a sham.

Dearth of resources to regulate The report reveals a shockingly understaffed and abysmal infrastructure. Just 50 people handle applications for drug approval, and just 127 of 327 sanctioned posts are filled, though 1,045 are proposed. Just nine deputy and assistant drugs controllers handle 20,000 applications of various types, inspecting labs, 10,500 manufacturing units, and 600,000 sales outlets; providing information to parliament; meeting the public, attending court cases, and so on. And the CDSCO is headed by a drugs controller whose post demands nothing more than a graduate degree in pharmacy. The problem is compounded by a grossly inadequate infrastructure including data maintenance and coordination between state-level offices. The office is expected to review and decide upon an average of 1,600 applications for new drugs every year. This state of affairs, well known to anyone who has interacted with the DCGI’s office, is conducive to the larger scenario described by the committee: a nexus between regulator, industry and medical ‘experts’ which enables companies to sell, in India, dangerous drugs not approved in other countries.

In one part of its investigation, the committee drew a random sample of 42 from the total 2,167 new foreign drugs (less than 2%) approved by the CDSCO from Jan 2001 to Nov 2010. Of these 42 drugs, all documents were missing for three (7.1%). Of these three, one was not approved in countries with strong regulatory bodies, and the other two had been withdrawn. The committee expresses doubts as to whether this “disappearance [of documents] was accidental” (1: 26). Of the remaining 39 drugs on which information was made available, the mandatory Phase 3 trials on the drug’s safety for the Indian population were waived in 11 (28.2%). 13 (33.3%) did not have permission for sale in any major developed countries. Not one of these 13 drugs has any special or specific relevance to medical needs in India. 25 drugs (64%) were approved without seeking any expert opinion; in the remaining 14 (36%) the opinions of only three or four experts was obtained. In two of 39 (5.1%) drugs, trials were on less than the minimum 100 patients, and in one (2.6%) on less than the minimum three centres. Four (10.3%) drugs were approved with neither clinical trial nor expert opinion. Finally, the CDSCO could provide Periodic Safety Update Reports (mandatory as part of post marketing surveillance) of only eight out of 39 drugs. The committee also obtained information on all new foreign drugs approved without any clinical trial in India from January 2008 to October 2010 (34 months). The CDSCO gave a list of 31 such drugs, but the committee identified two more drugs that met these criteria. Thus 33 new foreign drugs were approved in 34 months -- almost one every month – without the required clinical trials here. The committee demolished the CDSCO’s and the health secretary’s claims that these 33 approvals were given in the “public interest” – in response to an emergency such as a serious epidemic situation, for which presumably the law waives these requirements. None of the drugs approved was for such an emergency; some were pain killers, appetite stimulants, appetite suppressants, and anti-depressants. The CDSCO claimed that these drugs were approved after getting expert opinions and submission of the mandatory PMS data. However, expert opinions were collected in only five of 33 (15.2%) drugs -- and the CDSCO could not produce post marketing surveillance data on those drugs.

Other questionable practices of the CDSCO

New (foreign) drug approval – the CDSCO way The committee carried out a systematic investigation of the approval of new foreign drugs, looking at two document trails. Its findings in both cases are shocking.

The report highlights many other questionable practices of the CDSCO. It records specific examples of unlawful approvals (such as Buclizine, Letrozole, Deanxit and a placental extract). It gives examples of state FDAs acting on their own, and manufacturers

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deliberately using confusing brand names. It notes that there is no mechanism for withdrawing drugs found to be substandard. About drug information, it states that the CDSCO doesn’t ask companies for updates, so companies don’t provide them. Finally, drugs are advertised directly to the public in violation of the law, but do not provide consumers basic information on these drugs as is required abroad.

Collusion between industry, regulator and expert The committee is scathing in its comments on the manner in which regulators and doctors, who are expected to use their expertise and power to ensure safe, effective and necessary drugs, collude with industry. The report names several senior clinicians who have provided expert opinions that companies have used to introduce their drugs without clinical trials, and has annexed copies of their opinions. “A review of the opinions submitted by the experts on various drugs shows that an overwhelming majority are recommendations based on personal perception without giving any hard scientific evidence or data… Still worse, there is adequate documentary evidence to come to the conclusion that many opinions were actually written by the invisible hands of drug manufacturers and experts merely obliged by putting their signatures.” (1: 33) It concludes that “many actions by experts… are clearly unethical and may be in violation of the Code of Ethics of the Medical Council of India applicable to doctors. Hence the matter should be referred to MCI for necessary follow up and action. In addition, in the case of government employed doctors, the matter must also be taken up with medical colleges/hospital authorities for suitable action.” (1: 36) Second, many experts appointed on the CDSCO’s advisory committees are from Delhi and surrounding areas, so much so that one expert from Delhi “sat on 5 of the 6 committees (1: 46).

Committee recommendations The committee’s recommendations include punishment of those found guilty of the various violations it lists -- the companies marketing drugs that are banned in other countries, the doctors who signed ‘expert opinions’ for such drugs, and the officials who gave a rubber stamp of approval to the sham. The committee also calls for transparency in the approval process: guidelines on selection of experts, declaration of conflicts of interest, and experts’ opinions to be made public. The committee notes that the current requirement of phase 3 trials on 100 patients, to look at the drug’s impact on the ethnic groups in India, is unscientific and therefore unethical. It is also viewed by industry as a technicality, a matter of generating paperwork – though even this is bypassed when possible, as the report reveals. The committee recommends that ‘phase 3 trials’ in India for approval here have larger, representative samples to detect any differences in the drug’s metabolism in various ethnic groups, and with more rigorous monitoring. However, the notion that ethnic diversity is represented through outward physical characteristics is scientifically questionable. Nutritionists have suggested that differences in how drugs are

metabolised by malnourished people is more relevant; however this cannot be tested ethically. The focus should be on whether the drug is essential, or irrational, or just another me-too drug, and on an effective system of pharmacovigilance for all sideeffects, adverse events and deaths. Likewise, in the absence of any functioning system of pharmacovigilance, the committee recommends that periodic safety update reports be substituted with controlled postmarketing trials. However, the absence of pharmacovigilance is a serious lacuna that cannot be filled with post-marketing trials.

Larger context of drug approval Interestingly, in contrast to its clear-eyed analysis of the Indian scene, the committee holds the standards and functioning of regulatory bodies such as the USFDA in high esteem. Contrary to the committee’s judgment, though the USFDA’s mission statement is “protecting the public health”, the FDA is not very different from the CDSCO in its functioning, fraught with irregular decisions because of industry funding. With the Prescription Drug User Fee Act (PDUFA), 1992, industry provides the FDA’s Centre for Drug Evaluation and Research money to pay for staff and infrastructure and provide time-bound review of applications. As a result, the FDA commissioner recently argued, justifying industry-funded regulation: “We lead the world in the number and speed of drug approvals... To achieve these results, and speed access for the American people, we made use of accelerated approvals and flexible clinical trial requirements and made sure manufacturers know that marketing applications can be based solely on foreign clinical data that meets certain clear and specific requirements.”(2) With the renewal of the PDUFA in May 2012, industry will provide almost half of the agency’s budget of $4.5 billion (3) In fact, 98% of the FDA’s budget increase will be covered by the increase in user fees (2). Further, the FDA permits consultants for drug companies to serve on its own ‘expert committees’. Waivers are granted to conflict of interest guidelines. It is no surprise when these expert committees vote to keep on the market drugs that have harmed people, even killed them, even when safer alternatives are available (4). Clearly the money and guidelines have not kept dangerous drugs off the American market. There are ethical implications in a regulatory body taking money from the very industry it is supposed to regulate. The regulator should be sufficiently funded through taxes on the drug industry and contract research organisations (CROs). The USFDA’s industry-driven requirements have also fuelled growth, in India, of outsourced drug trials with no scientific value and with evidence of unethical and dangerous practices. Its insistence on placebo-controlled trials of drugs even when an effective treatment exists comes from industry’s need to show the effect of me-too drugs of marginal value, even if they are less effective than the current treatment. One reason the FDA accepts data from outsourced trials is that such trials cost industry less. Another is that placebo-controlled

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trials may not be permitted in the US. For the same reason, it waived international ethical guidelines when they became inconvenient to such requirements. The US FDA is brought into this discussion because its consequences are felt in India, when industry lays down the agenda for drug approval and research, such as in encouraging outsourced drug trials in India. The DCGI accepts data submitted to the FDA towards marketing approval here. India does not need to emulate the US FDA. Any suggestion that money to meet staff and infrastructure shortages come from industry should be opposed vigorously.

Government response Many of the committee’s recommendations along with the report’s findings could result in a regulatory body that is accountable to the people whose health and lives it is supposed to protect. Given the extent of wrongdoing documented by the committee, the findings justify action not only on the 39 cases it investigated; approval documents for all drugs at least from 2001 to the present must be investigated. Indeed, transparency at all levels of the approval process is a critical step in making the organisation accountable to the public. The same is true of the proceedings of ethics review committees which function as regulators in drug trials. However, the government’s response – to appoint yet another committee to further investigate the findings – do not give confidence that the report will have an impact on

the regulation of the drug industry in India. The committee members come from the same coterie of experts referred to in the Standing Committee report. The Indian Council of Medical Research, whose director is a committee member, was part of the HPV vaccine trial that is now established to be grossly unethical. Another member headed the committee that investigated the HPV vaccine trial and identified the various unethical practices but concluded that no one person could be held responsible for them. Any further investigation should come from non-interested parties, and the findings and action taken must be made public if this report is to have any value. References 1. Department-related Standing Committee on Health and Family Welfare. Fifty-ninth report on the functioning of the Central Drugs Standard Control Organisation (CDSCO). New Delhi; Rajya Sabha Secretariat; 2012 May. 2. Hamburg MA. President’s fiscal year 2013 budget request for the FDA. US FDA [Internet]. 2012 Feb 29. [Cited 2012 May 27]. Available from: http://www.fda.gov/NewsEvents/Testimony/ucm293842.htm 3. Yukhananov A. US Senate passes bipartisan FDA funding bill. Reuters [Internet]. 2012 May 24 [cited 2012 May 27]. Available from: http://www.reuters.com/article/2012/05/24/congress-fdaidUSL1E8GOGS020120524. 4. Angell M. FDA: this agency can be dangerous. The New York Review of Books. 2010 Sep 30; 66-8.http://www.ahrp.org/cms/images/stories/ articles/angell_fda_dangerous.pdF

Technology in health care: current controversies Editors: Sandhya Srinivasan, George Thomas Published by: Forum for Medical Ethics Society and Centre for Studies in Ethics and Rights, Mumbai. December 2007. 288 pages. Rs 200 This collection of essays covers important discussions related to medical technology that have been carried in the Indian Journal of Medical Ethics. Each of the nine sections is preceded by a commentary by an expert in the field. The nine chapters cover placebo controls in research; intellectual property rights; family planning and population control; the HIV/ AIDS programme and research; electro convulsive therapy without anaesthesia, liver transplant technologies, end-of-life care, medical professionals and law enforcement, and technology in public health programmes. To order copies, please send a demand draft or cheque in favour of “Forum for Medical Ethics Society” to Forum for Medical Ethics Society, c/o Survey No. 2804-5, Aaram Society Road, Vakola, Santacruz(E), Mumbai 400 055 INDIA e-mail: [email protected]

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REPORT

Syria: Public health achievements and the effect of sanctions Waleed Al Faisal1, Kasturi Sen2 Yaser Al Saleh 3 1 DFCM, Faculty of Medicine, Damascus University, Damascus, SYRIA e-mail: [email protected] 2Institute of Tropical Medicine, Antwerp, BELGIUM 3Public health practitioner, Damascus, SYRIA. Corresponding author: Kasturi Sen e-mail: [email protected]

Since May 2011, Syria has faced severe economic sanctions which are all pervasive for the economy and society. There is by now considerable evidence in literature that sanctions have a serious impact on the health of citizens in both the short and long terms (1, 2). We, as a group of public health doctors and teachers, outline some key achievements of health services in Syria that took decades to become a reality, mainly through the efforts of professionals and the public at large. In this report, we explore the consequences of sanctions on the economy, on people’s health status, and healthcare systems. We call upon health activists everywhere to debate whether western-imposed economic sanctions have the right to punish whole populations, as they did with devastating consequences for the population of Iraq. An embargo affects whole populations and as such is akin to collective punishment, illegal in international law.

Health system achievements Syria is a lower middle income country (the estimated per capita income for 2009 was 3,900 US dollars) which achieved substantial improvements in the health of its population over the past three decades, owing to the efforts of dedicated public health professionals and an enabling health systems organisation. These include improvements in access to maternal and child healthcare services, education and better nutrition, resulting in the following:

the past two decades, as highlighted by Table 1 below.

Table 1: Essential health indicators: IMR, MMR, Syria, 1970-2010 (actual) and 2015 (projected to MDGs) 1970 1993 2002 2003 2004 2010 2015 IMR per 100,000 live births

132

33

24

18.1

17.1

14

12

U5 MR per 100,000 live births

164

44

29

20.2

19.3

16

13

MMR per 100,000 live births

482

107

71

65.4

58

45

32

Source: Ministry of Health, Damascus, Syria, Central Bureau of Statistics (2010)

Table 1 highlights significant declines in IMR from 132 per 100,000 live births in 1970 to 14 in 2010; and in MMR from a high of 482 per 100,000 live births in 1970 to 45 in 2010. This 10-fold decrease is a notable achievement given the relatively low per capita income of the country.

Table 2: MMR comparatively with other countries of the region over 1990-2008

ü major declines in maternal and child mortality over the past

three decades; ü comprehensive vaccination coverage; ü improved levels of literacy (particularly among women); ü plans to address a rising incidence of non-communicable

diseases (NCDs) through partnerships ; ü a project on an Integrated Response of Health Care System

to Rapid Ageing (INTRA) of the Population conducted in coordination with the World Health Organisation (since 2003) to involve older people in designing health services at the local level; ü a re-organisation of health services to increase local level

control as part of the process of decentralisation; and ü a systematisation of data and trends through the Health

Metrics Network and Syrian National Accounts. The country reveals a positive record with a declining infant mortality rate (IMR) and maternal mortality ratio (MMR) over

Year

Egypt

Syria

Jordan

2008

82 (51-130)

46 (20-100)

59( 35-100)

2005

90 (56-150)

50 (22-110)

66 (38-120)

2000

110 (69-180)

58( 26-130)

79 (46-140)

1995

150 (94-240)

77( 34-180)

95(55-170)

1990

220 (130-350)

120(52-290)

110( 64-210)

Source: Maternal Mortality 1990-2008 – WHO, UNICEF- WB, MM estimation. Inter- Agency group. Numbers in brackets are confidence intervals.

Table 2 highlights trends in MMR in Syria in comparison with countries at similar levels of development in the region. The MMR for Syria are lower, despite comparatively low levels of income and absence of substantial donor inputs in maternal health services, by comparison to those for Jordan and Egypt. To a large extent, the lower rates have been achieved by an integrated health system, in which institutional deliveries constitute more than 90% of all deliveries. These are complemented by improved literacy and awareness among women and with free maternal healthcare, all of which have contributed to the relatively positive health status of women and infants in the country up to 2011.

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Syria can also credit itself with comprehensive vaccination coverage, complemented by improved living standards, greater citizen awareness of health issues, and reductions in illiteracy especially among women. These have been supported by improvements to infrastructure, providing access to clean water and expanding public healthcare systems. There has been a commitment to the integration of healthcare at all levels of primary, secondary and tertiary care. It is also one of the countries of the region on target (until recently) to meet the health Millennium Development Goals (3).

Table 3: Prices of essential goods before and after sanctions Item Gold

Syria has provided free healthcare to all its citizens with a ceiling for charges from private providers. The right to comprehensive health coverage is guaranteed by the constitution with overall coordination, management and provision of services falling under the ministry of health. Despite external pressures to fully commercialise the health sector, 80% of beds in the country remain in the public sector; for outpatient facilities, a fee-for-service system had been recently introduced. However, private providers in the hospital sector have increased by 41% since the economy was opened up in 2005, posing a threat to universal access (4).

Direct and indirect effects of sanctions Since May 2011, Syria has been the target of economic sanctions. Their consequences, particularly to the health situation and facilities, both directly and indirectly are as stated below. Economic sanctions caused the USD exchange rate value in the Syrian markets to rise from 45 to above 70 Syrian pounds (SP). This essentially destroyed the value of the SP with ramifications for the overall economy. The table highlights the cost of basic essentials such as cooking oil and gas, milk, eggs. These have doubled and tripled over the past year, halving the value of salaries. The combination has had a devastating effect upon families, especially those with children, pregnant women and elderly people. The collapse of the exchange rate has increased the cost of health services and of medicines which are part of out-ofpocket expenditure. These changes will disproportionately affect vulnerable groups: mothers, children and the elderly. The cost of medicines to treat NCDs for example, will be seriously affected. Not only has the value of salaries collapsed, but there are thousands of job losses in the service sector (tourism in particular), booming prior to the conflict. Sanctions have led to interrupted power supply for up to 12 hours per day in many areas. This, apart from exposing people to extreme Syrian winter and summer temperatures, undermines the vaccines cold chain supplies and contributes to interruptions in the vaccination programme. In the longer term, this will lead to the loss of gains made in infection prevention and control in diseases such as poliomyelitis, contributing to a rise in morbidity and mortality among children.

Price after sanctions (SP)

1,700

3,100

250

800

Mazoot heating oil (one litre)

13

30

Vegetable ghee (Aseel) (4 kg)

615

675

Cheese 1 kg

80

180

Yogurt 1 litre

35

100

Sugar 1 kg

50

65

290

350

Milk 1 litre

20

55

Vegetable oil 1 litre

60

100

Rice 1 kg

40

160

Eggs 30 eggs

80

200

Tea 250 gm

30

45

Tomatoes 1 kg

15

50

Gas (one cylinder)

Public health services

Price before sanctions (SP)

Cow ghee 1 litre

From: http://www.hamafree.com/index.php?name=news&op=view&id=1208 (adjusted to May 2012 rates for rice, milk)

Sanctions have prevented the entry of essential medical supplies into the country, including those for cancer, diabetes and heart disease (not produced locally), and this will affect millions of people. The crisis in this sector will remain largely hidden as its consequences will be known mainly at the household level, and over a long period. Sanctions have also led indirectly to environmental sanitation defects (inability to guarantee potable water supplies for example). This is already having an effect in the short term by increasing the incidence of diarrhoeal disease, especially among children, and will contribute to a long term increase in mortalities from water-borne infections. Cold weather there is difficult, especially for vulnerable groups, but has been aggravated by the difficulties of obtaining oil for heating. As the above price index shows, the cost of heating oil has increased three-fold in the past year. Cold weather in the absence of heating will increase droplet infections and respiratory tract infections among the most vulnerable. There are indications that these are on the rise following a bitterly cold winter in 2011-2012. In the long run, an increase in mortalities from respiratory tract infections, especially among the elderly and children, will lead to losing gains made in increasing life expectancy and decreasing child mortality rates and cause immense suffering for the population. Refugees fleeing from violence are living in dismal conditions with little access to basic essentials, whilst the psychosocial impact (especially on children) is of serious concern.

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Health and human rights The global health and human rights agenda is on the ascendant, with a collection of dedicated scholars and lawyers on board, determined to defend the right to accessible quality healthcare for all. The situation in Syria for the majority of the population is an urgent one for this forum to address. The effects of the post- gulf war sanctions on the health and nutritional status of Iraqis, in particular children, have been well documented and one can only hope that the world will have learned some lessons from this experience1. Note Concerns about sanctions were expressed by the UN’s Committee on Economic, Social and Cultural Rights as early as 1997. In an extensive discussion the Committee noted that trade sanctions almost always have a dramatic impact on the rights recognised in the Covenant on Economic Social and Cultural Rights frequently causing “significant disruption in the distribution 1

of food, pharmaceuticals and sanitary supplies.”(para 3 in http:/www.unhcr. org/refworld/type,GENERAL,,,47q7079eO,O.html) References 1. Garfield R. The impact of economic sanctions on health and well being [Internet]. Relief and Rehabilitation Network. 1999 Nov [cited 2012 Jun 6]. Available from: http://www.essex.ac.uk/armedcon/story_id/The%20Im pact%20of%20Econmoic%20Sanctins%20on%20Health%20abd%20W ell-Being.pdf 2. World Health Organisation.The Syrian Arab Republic Crisis: meeting humanitarian health needs. Briefing. [Internet]. 2012 Mar 13. [cited 2012 Jun 28]. Available from: http://www.who.int/hac/donorinfo/syria_ donor_alert_13march2012.pdf 3. United Nations Development Program [Internet]. Geneva: UNDP; c 2010. Syria MDG report: the main challenge is environmental degradation. 2010 Sep 8[cited 2012 Jun 6]; [about 2 screens]. Available from: http://content. undp.org/go/newsroom/2010/september/mdg-report-syria-has-morekids-in-school-but-suffers-environmental-degradation.en 4. Sen K, Al Faisal W. Syria: Neo liberal reforms in health sector financingembedding unequal access. Soc Med. 2010 Mar; 6(3):171-82.

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FROM THE PRESS

Sickening waste

Expired HIV drugs in West Bengal public hospitals

The latest discovery of heaps of biomedical waste on the streets of Byculla, Mumbai, with rag-pickers rifling through them for saleable items, once more highlighted this serious threat to the health of the people of this densely populated metropolis. This led to squabbles between all the agencies concerned, including the Masina Hospital, other hospitals in the area, municipal officials, and the agency appointed to collect biomedical waste, SMS Envoclean.

A National Aids Control Organisation (NACO) audit report alleges that almost 3.5 lakh doses of HIV medicines have become unusable while remaining in the stocks of various government hospitals of West Bengal. The market cost of each of these doses is about Rs 10. The audit report mentions that these include almost 1.5 lakh doses for the drug-using HIV positive, and about 2 lakh doses for HIV+ children. These medicines were supplied by NACO based on the demand made by State AIDS Prevention and Control Societies (SACS), West Bengal. SACS authorities disclosed that a volunteer organisation in South Calcutta was given the responsibility of conducting a statewide survey to determine the number of HIV-positive people in different age groups in the state. Later, however, it was found out that the volunteer organisation had provided fictitious statistics. NACO authorities complain that the numbers were inflated by at least three times, and that this misrepresentation would not have been possible without the collusion of certain pharmaceutical companies, and of administrators of SACS. SACS representatives admitted that certain government hospitals overstocked these medicines for up to 12 years. They also admitted that none of the officers concerned find it necessary to check the expiry dates of the huge stocks of medicines.

Hazardous waste from medical facilities is required under the Bio-Medical Waste (Management and Handling) Rules, 1998, to be segregated and stored in colour-coded bags depending on the nature of the hazard, and incinerated at more than 900 degrees Celsius. This is to be done through agencies appointed for the purpose, or by the institutions themselves. However, the director of SMS Envoclean has claimed that 80% of Mumbai’s hospitals, both public and private, do not segregate their waste, endangering people’s health, both through the spread of dangerous infections on the streets, and through the sale of used syringes and other equipment. The Maharashtra Pollution Control Board representative, meanwhile, claimed that the Board carries out inspections whenever it receives a complaint from the relevant agency. The incident is only the tip of an iceberg, with similar scandals surfacing in Vadodara’s Sir Sayajirao Gaekwad Hospital, and in Bangalore. A Bangalore survey had shown that of 1,844 private health units, comprising 80% of the city’s healthcare facilities, only 30% had clearance from the Karnataka State Pollution Control Board. With the proliferation of spas and ‘day care centres’ which are less easy to monitor, the pollution threat looms large.

Parijat Bandyopadhayay, 3,50, 000 HIV medicine expired in stock (Trans.), Anandabazar Patrika, April 15 2012. Available from: http://www.anandabazar.com/archive/1120415/ index.html, last accessed on: April 19, 2012].

Sex selection: out in the open

The ghastly discovery of aborted female foetues in a river in Beed has made the district notorious all over the state of Maharashtra and beyond. A much deeper malaise has been exposed with the arrest of three doctors on charges of Sudeshna Chatterjee and Jyoti Shelar, 80% city hospitals carrying out illegal sex determination tests and abortions, and flout bio-waste disposal norms, Mumbai Mirror, April the number is growing every day. This crime is an open secret, 15 2012. Available from: http://www.mumbaimirror. as reports say the state’s own Family Welfare Office (SFWO) had com/index.aspx?page=article§id=15&contentid= warned the government in 2005 about the drastic decline in 2012041520120415205345578a8a99f3f ‘Sir Sayajirao the child sex ratio based on the 1991 and 2001 census figures. Gaekwad Hospital handling hazardous biomedical The 2011 census has shown that the problem is far worse than waste recklessly’, TNN, May 3, 2012 Available from: http:// supposed, with the fall visible in all 35 districts of Maharashtra, timesofindia.indiatimes.com/city/vadodara/Sir-Sayajirao- which was so far considered “progressive”. The sex ratio is lowest Gaekwad-Hospital-handling-hazardous-biomedical- in the districts of Jalgaon, Aurangabad, Ahmednagar, Beed, waste-recklessly/articleshow/12985566.cms. Sunitha Rao, Osmanabad, Solapur, Satara, and Sangli. The SFWO report is Hetal Vyas, Ultimatum to hospitals on biomedical waste also quoted as saying that the figures are worse in those areas disposal, TNN, May 21, 2012. Available from: http:// with more sonography clinics, of which 78% are concentrated ar ticles.timesofindia.indiatimes.com/2012-05-21/ in Mumbai, Pune, Nasik and Kolhapur. Ironically, Shirur taluka in bangalore/31800474_1_biomedical-waste-health-units- Beed, which has a sex ratio of 768 girls to every 1,000 boys, is healthcare-units said to have not a single sonography centre. [ 154 ]


Officials say a key problem in the area is dowry, and that even a sugarcane cutter has to pay above Rs two lakh as dowry for his daughter. Beed district has the lowest male-female sex ratio among children under the age of six in Maharashtra, at 801 female against 1,000 male children, according to the 2011 census. The government has responded to the scandal by forming teams of doctors to tour the cities of Mumbai, Pune and others to monitor ultrasound centres; by limiting radiologists to two ultrasound facilities only; and by conducting raids all over the state on these facilities.

Hindu Business Line Bureau, Government bans TB serological tests. The Hindu Business Line [Internet], June 19 2012. Available from: http://www.thehindubusinessline. com/industry-and-economy/government-and-policy/ article3547424.ece G. Srinivasan, Spare the patient!, The Hindu.com, June 24, 2012. Available from: http://www. thehindu.com/health/policy-and-issues/article3563003. ece

The Maharashtra Medical Council (MMC) has announced a decision to immediately suspend doctors charged with such offences, without waiting for the courts to pass a judgment. If they are found guilty, a five-year suspension would follow, according to Shivkumar Utture, executive member, MMC.

In a controversial case, the Bombay High Court permitted 21-year old Bidhan Barua to undergo a sex-reassignment procedure. The division bench of Justices SJ Vajifdar and AR Joshi observed that there is no law that can prohibit an adult from taking decisions pertaining to his own life. Bidhan had approached the court asking for his parents to be restrained from obstructing his planned surgery. He was supported by a psychiatric evaluation which found his a fit case for the procedure. The petitioner also said he had felt from his early teens that he was a woman trapped in a man’s body, and that he had later learned of the remedy for his problem.

Prashant Hamine, Maharashtra’s been killing baby girls since long. Afternoon Despatch and Courier, June 06, 2012, Press Trust of India, Beed illegal abortions case: another doctor arrested. PTI, June 7, 2012. Available from: http://www.business-standard.com/generalnews/ news/beed-illegal-abor tions-case-another-doctorarrested/17945 Senior Reporter, Cops told to keep an eye on hospitals, sonography centres Available from: http://www.sakaaltimes.com/20120606/46254071609 56411919.htm Sumitra Deb Roy, TNN Jun 8, 2012, Not a single ultrasound centre in Shirur taluka, Available from: http://articles.timesofindia.indiatimes.com/2012-06-08/ mumbai/32123512_1_shirur-beed-number-of-girl-child

Welcome ban on serological tests By a notification dated June 7, 2012, the ministry of health and family welfare has banned the manufacture, sale and import into the country of serological or blood-based test kits for tuberculosis, long considered to be unreliable and inaccurate by health advocacy groups. The ban had been recommended by the World Health Organisation last year. With almost two million new TB cases per year, amounting to one-fifth of the global burden, and multi drug-resistant TB now at three per cent of the annual estimate of TB cases, the country can ill afford such costly and imprecise measures. A paper published in the National Medical Journal of India is quoted as saying that around 15 lakh serological tests are performed in the country annually, costing the public around Rs 75 crore despite the evidence against them. Most of the test kits are imported from the UK and France, where they are not recommended for local use. To quote Dr Karin Meyer of the WHO Stop TB Department,“Blood tests for TB are often targeted at countries with weak regulatory mechanisms for diagnostics, where questionable marketing incentives can override the welfare of patients.” Advocacy groups have welcomed the government’s decision but have stressed the need for strict implementation of the ban, as well as improved access to reliable tests in the public health sector.

Sex reassignment: ethical challenges

Serious challenges arise in related cases of mixed gonadal dysgenesis, a condition in which the child’s sex organs are not clearly male or female. In a recent case, a five-year old child was operated upon for this condition. Doctors removed the female sex organs of the child, so that he could live as a boy from then onwards. Such cases raise grave ethical dilemmas. In a society ruled by a preference for male children, how much is the child’s interest considered in such decisions? How old should a child be before such procedures are carried out? Should the child have no say in a decision which will affect her or his entire life? On the other hand, parents and surgeons have argued that given the potential social trauma that such a child could suffer as she or he grows, they are acting in the best interests of the child by treating the condition early. Dr Sanjay Oak, Dean of KEM Hospital, stressed that such surgeries are carried out only after elaborate tests - genetic chromosome, hormonal, neurological tests, sonography and psychiatric evaluations - are done. Other doctors believe that social pressures and a personal sense of identity are crucial in shaping a person and hence they should act sooner and not later. Rediff.com, Bombay HC nod to youth for sex change surgery, Rediff.com, May 7, 2012 Available from: http:// www.rediff.com/news/report/bombay-hc-nod-to-youthfor-sex-change-surgery/20120507.htm Lata Mishra, Who gets to decide a child’s gender? Mumbai Mirror, May 23 2012. http://timesofindia.indiatimes.com/life-style/ relationships/parenting/Who-gets-to-decide-a-childsgender/articleshow/13407295.cms Contributions by Chhanda Chakraborti and Meenakshi D’Cruz Compiled by Meenakshi D’Cruz e-mail: meenakshidcruz@ gmail.com

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DISCUSSION: Medical Humanities

The patient - doctor relationship Usha Rajaram Department of English, UWC Mahindra College, Paud, Pune 412 108 INDIA e-mail: [email protected]

Abstract In this essay I speak about the need to put the patient first when discussing the relationship between the patient and the doctor. From my own experience of having been a cancer patient, I argue that most patients appreciate and feel empowered by knowledge about their illness if this knowledge is given sensitively. I also try to explain why doctors need to recognise and respond sensitively to the patient’s need to be healed, psychologically, as well, especially in cases of serious or chronic illnesses. I would like to talk about the patient-doctor relationship. It’s always talked of as doctor-patient relationship but I think one needs to look at it from the point of view of the patient. It is an important relationship when you are ill, perhaps the most important relationship in your life at that point in time. I have been ill many times, have undergone many surgeries, and had lots of interactions with doctors. Besides deriving comfort and knowledge from them, I have also been very interested in seeing how they deal with patients. The power equation between doctor and patient can never be equal. Clearly, one feels at the mercy of, not just the doctor, but the whole medical system. One feels like a body that they are taking care of – or, given the degree of specialisation, one ends up feeling that each is looking at a particular organ, and how these organs are put together is anybody’s responsibility. That is also because the whole breed of general practitioners (GP) is becoming extinct. The doctor who takes complete responsibility for you is a breed that has completely vanished. Ultimately, it’s mainly the responsibility of the patient, who has to look at different aspects of his or her body and decide that it does work cohesively after all with no help from doctors. The patient and doctor meet under trying circumstances - at least as far as the patient is concerned. The context may be just routine for the doctor. You may have made the choice to meet the particular doctor. Sometimes, of course, the power of choice is missing, and you go to the hospital and have to deal with whoever you meet. The anxiety of the patient is born out of the inequalities inherent in the situation. This is why it’s so important to look at this relationship from the perspective of the patient. I’m a cancer patient and I have been operated on for breast cancer twice, with a gap of 18 or 19 years, and both times it was vital to me that the doctors told me everything. But I

can remember times when the doctors hesitated to tell me something, and I had to reassure them! Doctors often go by what they sense the patients want to know. Should the doctor tell the patient the whole truth? It is possible that wanting to know as much of the truth as possible is a peculiarity of my own disposition. However, I would like to think that if the doctors confided in you and said, “This is a difficult situation, and this is what is happening to you; I feel that given your participation you can face this with some equanimity and courage” – almost demanding those two qualities as it were – then the doctor could say as much as he intuitively thinks the patient can take, and it will become a more empowering journey for the patient. I would say that telling the patient everything is a basic requirement, even if the patient is not willing to face the truth. Somehow, the fact that you know the truth, or most of it, gives you a sense of empowerment. Uncertainty and a lack of knowledge somehow multiply the monsters in one’s head. It is better perhaps to have a factual and ‘true’ monster than 10,000 false bogeys. Patients will take it, if they are told with a certain amount of compassion and supported through it. And, in India, there are usually enough relatives to support this process. Anyway, this whole business of knowing the whole truth may not work – after all, who knows the whole truth? I have myself been treated with tamoxifen and letrozole which counter estrogen. While talking to doctors and consulting the literature, I encountered considerable variation in the recommended duration of treatment, as well as the claimed degree of benefit. So it seems to me that research itself, in cancer or many other diseases, is very fuzzy. There is a lot of uncertainty, and I don’t think even the doctors know the whole truth... But I feel it is crucial to lead up to the truth that the patient can live with. There is another reason doctors need to tell patients as much of the truth as they themselves know. This profile of the newly emerging patient who is Internet savvy, and perhaps has more information, and more potential for misinterpretation, is something which the doctor has to reckon with. I know that a little knowledge can be a dangerous thing, but even that little knowledge is empowering... Doctors are a resource, so something like a list of questions prepared beforehand can be very useful. If you have 10

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minutes with the doctor, it is illuminating if the patient can ask questions and then have some say in deciding how the whole conversation goes. Doctors are generally very willing to answer many questions. They see that as a very focused way of giving their attention and care, and even impart medical knowledge when necessary. And that becomes an important way of communicating and building up rapport. A patient can also help in that - it is such a crucial relationship when you are ill. Thinking of what questions to ask also gives the patient something concrete to do. I think that in situations like this, empowerment is a matter of whether you can at least partially take charge of the conversation or you have to let it happen whichever way the doctor wants it to happen. This seems like a small thing, but it could be big in terms of saying: “Look, I have in some sense taken charge of my illness,” and that is important. In the case of a life-threatening illness like cancer, or a chronic illness like lupus, there is a long-term relationship between a patient and a doctor. They meet at a critical point in the patient’s life, the doctor saves your life, there’s no way the relationship is anything but deep and sacred. You have a sense of being cared for and nourished - it’s much more than just gratitude. This is implicit in such a relationship - many people may not express it in words, they usually bring gifts for the doctor - but it is there.

Being a cancer patient, I had such a relationship with my oncologists. When the cancer recurred, I could draw emotional sustenance from the same doctors. Ten years after the surgery, I could call my oncologist and pick up that relationship from where we had left off. One is always looking for that rapport. Most middle class patients exercise their choice when it comes to doctors. Maybe we’re trying to find a replication of the earlier GP model, where generations of a family went to the same doctor. When this rapport is missing, I personally believe no healing takes place. Sometimes, doctors don’t take cognisance of this psychological dimension in the patient. They either pretend it doesn’t exist or are critical of it. I remember when my doctor - the company doctor but also a sort of GP - felt I was unnecessarily panicking when I said I wanted to see an oncologist. He quoted the Sanskrit shloka Samshayo atma vinashyate (Doubt destroys the soul) and threw me out of his clinic. I went to the oncologist, fixed the date for my surgery, then went back to my doctor, and told him that I could not have the surgery without letting him know; that including him was important for my healing. He threw his arms around me, almost with tears in his eyes, and said I was his daughter, and that’s why he had said what he did. I feel sometimes the patient-doctor relationship can go beyond the parameters defined by the illness that first brings them together.

The Indian Journal of Medical Ethics is indexed on Pubmed. as are the journal’s previous titles, Medical Ethics (1993-1995) and Issues in Medical Ethics (1996 to 2003).

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My recent experiences as a patient Sunil K Pandya Department of Neurosurgery, Jaslok Hospital, 15, Deshmukh Marg, Mumbai 400 026 INDIA e-mail: [email protected]

Abstract As a neurosurgeon, it was a new experience for me to face the consequences of an accidental fall just before I underwent simple spinal surgery for relief from backache. This essay describes how I was affected by the unexpected operations that followed. The physical pain, the anxieties, small inconveniences and the relatively free use of drugs such as antibiotics, that I might have taken for granted in my patients undergoing surgery, now took on a new meaning for me. My perspective on my illness as patient, rather than as physician, and the special care given to me by medical, nursing, and paramedical colleagues were transforming experiences. Based on these occurrences, I offer suggestions on how we can improve our approach to patients. It may sound ironic that a person who has performed several spinal operations needed to have three himself in rapid succession.

The beginning Over June and July 2011, I developed pain travelling from the lower back down the left lower limb, with progressive reduction of the distance I could walk without pain. This was against a background of longstanding psoriasis with associated changes in the spinal column. My neurosurgery colleague examined me and decided that surgery was necessary to relieve pressure on a spinal nerve. I had expected such findings. As with any other patient, there was apprehension about the surgery, especially given my age (71 years). I prepared a document listing my advance directives for my colleague and handed it over to him. Briefly, it listed instructions in the event of complications from anaesthesia or surgery that left me severely brain damaged or permanently incapacitated. Such a document is not legally valid in India, but I was confident that he would implement my wishes. The operation was scheduled for August 29, 2011. My colleague - to whom I had entrusted myself - sought the help of an expert in endoscopic spinal surgery, currently practising in Kolhapur. He kindly agreed to come to Mumbai and perform the operation in our hospital.

Unexpected twist The next morning before leaving for the operation theatre I went to the toilet and emptied my urinary bladder. While emerging from the toilet, I slipped on the wet floor and fell flat on my back onto the floor. The central segment of the spinal column (dorsal spine) bore the brunt of the impact. As I lay on the floor, in considerable pain, I rapidly checked the movements and sensations of the limbs and found them

unimpaired. This reassured me that there was no damage to the spinal cord or nerves. On hearing the thud caused by my fall, my wife rushed into the toilet and found me unable to rise because of the pain. She helped me into the upright position and, after the pain had eased a little, on to my bed. The trolley arrived soon thereafter and took me to the theatre. On reaching there, I informed my doctors about the fall and the pain. Clinical examination suggested injury to the muscles and ligaments. They advised proceeding with the surgery to which I readily consented, as I wanted to be rid of the pain down my left lower limb. The operation went off smoothly and I have experienced no ill consequences from it. The radiating pain appears to have been abolished. I was sent home the day after the operation. The drugs prescribed were continued at home, paracetamol being taken orally at home in the same dose as was injected in the hospital. As I remained pain-free, on the fifth day I started reducing the dosage with a view to discontinuing it. However, the pain felt after the fall recurred. I raised the dosage of paracetamol, with some reduction but not abolition of the pain. The pain was worse when I lay down on my bed and when rising, and very troublesome even when I turned in bed, awakening me almost every hour or so. A week after the operation, I was in misery and was readmitted to hospital. Computerised tomographic scan of the spine showed compression of a dorsal vertebra. It was deemed to be such that it would settle over time. A combination of physiotherapy and drugs helped control the pain. I was sent home a few days later. Using the prescribed tablets I started attending my consulting room in the hospital and could see patients over two hours. Standing and walking were painful, and I stooped visibly when doing so. As the pain worsened over time, I consulted our orthopaedic surgeon who suggested I see our spinal surgeon. After reviewing the new x-ray and scan films examinations, the surgeon recommended fusion of five vertebrae with the injured bone in the centre. Accordingly I was readmitted and the operation was carried out in two stages, 15 days apart.

Unwelcome side-effects After each operation, the antibiotics prescribed caused a loss of appetite but this was worse after the last operation. For over 13 days, I was unable to consume food. I could manage three

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glasses of fresh fruit juice and water each day, and at best, a small bowl of yoghurt. Eating a spoonful of any solid food made me feel as if I had a huge ball of lead in my stomach. Even after the antibiotics were stopped, this difficulty in eating persisted for over a week. The consequences were obvious. I lost a lot of weight and there was thinning and weakness of muscles. This was most marked in the muscles moving the hip and knee joints. I also found myself choking with emotion with abnormal frequency. Gratitude at the unfailing courtesy shown by ward attendants, nurses and doctors; the thoughtfulness of visitors who brought books for me to read; the plight of a friend whose wife was being treated in a room two floors below mine for a serious illness that was eventually to carry her away – and other similar instances – brought me to the verge of tears and I often had to stop in mid-sentence, to avoid embarrassing myself and those around me. This persisted for some weeks, even after I returned home. I am not sure about the cause. I have witnessed it in patients undergoing serious operations, such as on the heart. I wonder whether, in my case, it followed a combination of prolonged pain and sleeplessness before surgery, helplessness in the hospital, the need to rely on others for help in simple tasks such as bathing, passing urine and stools, standing and walking. I was also witness to my wife taking leave from her research for weeks and spending all day by my side, attending to my needs. When I was sent home on November 20, I was unable to climb or descend a single step. I was taken from my room to my friend’s vehicle on a wheelchair and lifted manually on to the seat. On reaching home, I was helped to descend from the car, placed on a chair and carried on the chair to my bed. You can imagine my distress at the extent of my disability. Accustomed to striding effortlessly, climbing several floors and brisk action, I was reduced to a state where I needed help with the simplest movement!

Slow but steady recovery At home there was slow and steady recovery of sleep and appetite. I continued the exercises prescribed in the hospital and could resume walking with the “walker”. It was necessary for someone to be by my side as soon as I attempted to stand, to ensure that I did not fall. My physiotherapist at home assured me that I would improve gradually. This helped my morale. As I took increasing quantities of food with high protein content and whey supplements, walking improved to the stage where I could discard the walker. This was a defining moment. I had grown dependent on it, fearing a fall without it. One evening a colleague visited me, seeing me sit on my bed, unaided and stand, pronounced that I did not need the walker any more. He asked me to start walking. I asked for the walker. “Why do you need the walker? I am here in case you need support but rest assured you will not need it.” Even so, he offered me his hand. Holding it - more for moral than physical support - I was able to walk from my bedroom to the drawing

room with just mild unsteadiness. There he helped me sit and forbade me from using the walker any more. Such was my diffidence that I had to steel myself to do so! I now walk freely in my home, have progressively become able to climb three floors, walk around the circumference of our terrace and along the nearby sea face. Fresh x-ray films of the operated area showed satisfactory repair of the broken bone. I should be able to return to work in two months.

How it feels to be a patient I experienced a progressive loss of morale lying on the bed, being sponged instead of having my own bath and using the bedpan. When absolutely necessary, as in my case, this has to be endured and there was nothing my treating surgeons could do about it. Empathising with me did help, but true relief was only obtained when, at last, I was able to sit, stand and walk. Like many before me, I bemoan the design and construction of the bedpan, which is especially painful to a person who has recently undergone spinal surgery. Bedpans are usually constructed of stainless steel and are cold, hard and uncomfortable. On the other hand, stainless steel is easy to clean and durable. The use of antiseptics renders them free from germs. Plastic has been shown to form a reservoir for microorganisms. Bedpan liners made of recycled pulp (moulded pulp) or biodegradable plastic, containing absorbent powder to eliminate splashing and spills do decrease infection but are expensive and not generally available in India. As a member of the hospital staff, I was privileged. All those attending me, from the consultant to the persons helping me with urine and stools, were uniformly kind and courteous. Many facilities offered to me are not easily available to most patients. I realise this is unfair to them. It is worth bringing this differential care to the notice of young staff members and medical students and helping them devise measures to reduce such differential care for the benefit of those not privileged. As you will see from the following paragraph, it may be practically difficult to treat all patients in the same manner as I was treated. During the period when I could not take in any nutrition, our senior physiotherapist sent me fresh fruit juice from her home every day. Our dietician willingly offered to make whatever food I desired to my specifications and did so, unfortunately without any improvement in my being able to eat what was prepared so thoughtfully. The consultants made regular visits and kept me informed of every step taken. I took great care in refraining from any interference in diagnostic tests or drug therapy. I know of the difficulties created when patients or their relations interfere in the treatment. If all consultants were considerate with their patients and explained the need for tests or the form of treatment being administered, this may eliminate interference

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by patient or relations, as their anxieties would have been addressed. I found the resident doctors attending to me in some awe. Their examinations were often restricted to obtaining my opinion of the neurological findings and inspection of the wounds. They were careful to cause minimal pain. On the two occasions during the month I was in hospital for the second and third operations, when I had to request resident doctors to attend to me at night, their responses were swift. In turn, I took care not to trouble them unless absolutely necessary. This is important as most resident doctors are very hard worked and under tremendous stress. Calls to them at odd hours of the night deprive them of much needed rest. I am fortunate in being a doctor, who can distinguish symptoms that can wait till the next day from those that cannot. Most patients have not been trained as I have been and may be unable to do so. As a result, nurses and doctors may show impatience with patients who make frequent calls on them. The nurses and doctors, in turn, must remain aware that such calls are being made out of distress and need to be dealt with serenely. In many instances, reassurance and good cheer may be all that is needed. In relation to this, there is another very important point to be made. In many hospitals it is the practice for the resident doctor, when called at night by the nurse, to listen to the nurse’s account of the patient’s complaint and then prescribe over the telephone without going to the patient’s bedside and examining the patient. The dangers of this approach cannot be overstated. The nurse does not have the expertise of the doctor. A symptom may arise from many causes, some of them with the potential to worsen the patient’s condition. There is no substitute for examining the patient when called, even though it may turn out that it is for a trifling cause. I did not experience such behaviour during my stay in hospital, but have seen it during my rounds as a surgeon. An interesting experience was the recording of blood pressure. A nurse would check my blood pressure and tell me that it was 140mm/80mm. Three hours or so later another would check it and find it 170/100 mm. A further three hours or so later, the third nurse would tell me it was 100/70. Such erratic readings can puzzle the clinician and even prompt prescription of a drug to lower blood pressure when it is not really needed.

Some suggestions ü Bathrooms and toilets, especially in hospitals and clinics,

must have tiles with surfaces that are not smooth and reduce the chances of slipping and falling. The ill are especially prone to such injuries. It is also necessary to provide firmly anchored bars along the full lengths of the walls of toilets and bathrooms that can be used by patients to support themselves.

ü The blood pressure instruments may need calibration. I also

wonder if there should be periodic exercises when the blood pressure is recorded by different nurses, one after another, on the same person to check on consistency in results. With the urge to treat any finding deemed abnormal, this is essential to avoid unnecessary therapy that might even cause complications. ü A small rise in temperature – to 99.8 degrees – prompted our

medical consultant to request white cell counts and when these showed a rise in total count from 90,00 to 11,000, to change antibiotics. At that time, there was painful swelling of a vein at the site of infusions. This was not considered as the cause for fever and mild increase in white cell count. I wonder whether it would have been in order to watch the temperature over the next day or two and obtain another white cell count before changing antibiotics. ü My complaints of loss of appetite usually inspired comments

such as: “Consider food as medicine and take it slowly.” “Take small quantities every hour or so.” I had already tried these measures but the feeling of a huge load in the stomach rendered these ineffective. As a consultant later told me, many patients complain of loss of appetite on such antibiotics and we may need to take such complaints seriously. Often – especially when the patient is a lay person – several complaints are brushed aside with a statement such as “Don’t worry about this. It will soon disappear.” Spending a little time explaining the basis for the unwelcome side-effect, instituting measures to ameliorate the symptom(s) when possible and altering the principal therapy when the side-effect from it is causing damage will go a long way towards helping the patient. ü Suggestion boxes are usually maintained at central locations

in hospitals, often on each floor. It is sad that most patients disregard them and do not voice their own observations of shortcomings and recommendations for improving the care of patients. Hospital authorities may also be at fault, as other priorities or problems make them neglect these important feed-back messages born of practical experiences.

Looking back In summing up, I am, surprisingly, not unhappy at having undergone this experience. It has enriched me in many ways, most of all by emphasising to me the vast stores of affection and care available to me. These were lavished on me by my colleagues in hospital, my wife, my children, other relatives and friends. I am deeply humbled. As a consequence of the severe loss of appetite during the last fortnight or so in the hospital, I have become lean – a welcome development – though I would not recommend this as a means for losing weight!

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One flu over the doctor’s nest Kapil Rangan1, Bhargavi Pawar2 1 Sri Jayadeva Institute of Cardiovascular Sciences and Research, Bannerghatta Road, Bangalore 560 069 INDIA 2 St John’s Medical College, Sarjapur Road, Bangalore 560 034 INDIA Author for correspondence: Kapil Rangan e-mail: [email protected]

I visited the doc, was feeling quite ill… Hoping for comfort or maybe a pill Was taken by surprise when he barely did glance, To explain my ailment, hardly gave me a chance!

‘‘Our system is foul!’’ I winced in pain. ‘It’s no wonder we face a brain drain. Diligently those who honour their seat Earn barely enough to make ends meet

Papers in a sheaf were handed to me Blood tests and a scan, even a CT! For over a day I ran from pillar to pole The bills in my pocket – they burnt a hole.

With generous compensation, the corporates entice For questionable ethics – humanity pays the price. I had reckoned this to be a noble profession. It’s become a business is my honest confession.

The reports he scanned and shook his head “Hmmm…let’s try a new drug instead.” Each pill from which, I was to learn, Pharma and doc, more cash would earn.

Of medical men, if this be the plight An ignorant man would be a doctor’s delight! For, when I sought treatment for a simple flu, Was he too busy to realise… I was a doctor too?

For a ‘second opinion’ to a friend he sent Upon meeting whom, I was quick to repent. Merit aside, a degree he’d bought. Of medical ken, he knowledge had not!

An undergraduate student’s view of the medical humanities Jayesh Vira Final year medical student, GS Medical College and KEM Hospital, Parel, Mumbai 400 012 INDIA e-mail: [email protected]

For the new medical student, admission into medical college marks the culmination of years of study and effort, and the beginning of a new era in his life. He is on course to becoming a doctor. There is enthusiasm as well as expectation. There are dreams which await fulfilment. But this excitement does not last long, as he starts experiencing challenges and stresses that he had not foreseen. These problems can be listed under two broad categories – scholastic and personal. Scholastic problems include the sudden transition from the study pattern of 10+2 and CET, to the vast and complex one of the MBBS; the fear of failing for the first time; and the pressure to secure a post-graduate seat. Personal and interpersonal issues include adapting to hostel life, the trauma of studying in a language in which one is not fluent; and peer pressure and groupism based on class, regional, or scholastic differences.

My observations as a student As an undergraduate, I have observed that the nature of these

challenges and tensions varies as the student goes through the different years of his education. The first year is generally spent in becoming acclimatised to the new environment. Most of the students get to know each other in the course of the year and segregate themselves into groups, mainly based on regions. Interpersonal conflicts are minimal, but personal, linguistic and scholastic difficulties are dominant. In the second year there is a lighter syllabus and relatively more time, opening up opportunities for various extracurricular activities. However, group dynamics are at their peak, with each group trying to dominate the others, and this adds to existing stressors. Lack of confidence, inadequate communication skills and insufficient orientation towards procedures and practices all deter students from going to the wards. In the third year, the additional stress is that of scholastic performance, even as economic stress may become prominent for some.

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Senior students can provide appropriate guidance to junior students. However, seniors invariably end up transferring their prejudices and tensions to the juniors, and these only get more acute over the years.

ü Introduction of compulsory reading hours in the first year,

As students learn to cope with these tensions, and manage academics, they are left with hardly any time or inclination to spare a thought for the hardships of others. When passing an exam and scoring is the chief aim, the patient is bound to get relegated to being “just a case”. The habits formed during these undergraduate years continue into residency and become the guiding principles of practice thereafter. One can expect students to be sensitive to their patient only when they are at ease with themselves.

depicting local customs and traditions to improve general knowledge.

Suggestions for reform The roots of most of these stresses can be traced back to the lack of dialogue between students during the first year. Dialogue alone can help sensitise students towards each other, clear many prejudices and prevent the snowballing of stress. Some of the following programmes could help achieve these changes: ü Basic

training programmes in English and regional languages.

ü Workshops on coping skills ü Random allocation of students to small groups for various

activities.

ensuring that every student reads a specified amount of regional and English texts, followed by group discussions. ü Promoting regular performances of small skits and plays

ü Proper orientation in the principles of epidemiology and

ward practices before the commencement of clinical postings. ü Workshops and simulations on communication skills and

patient management. Once we have a class of students who have experienced such programmes, they can be a positive influence on their juniors.

Conclusion These programmes and activities must be introduced in the first year, building up to advanced training in the later years. Whether we name these programmes “medical humanities” or something else, they need to be relevant and useful to the student, helping him address the problems which he faces every day, during his undergraduate years. Only then will he develop an interest in the medical humanities. And only then will he be in a frame of mind to learn to be a good doctor.

Medical humanities: a resident doctor’s perspective Anvita Pauranik Department of Radiology, GS Medical College and KEM Hospital, Acharya Donde Marg, Parel, Mumbai 400 012 INDIA e-mail: [email protected]

Abstract

Background: the problem

The barrage of competitive examinations, overwork, sleep deprivation, and the pressure of expectations all combine to destroy the dreams that resident doctors have when they start medical school. The empathy they had before entering this field fades away, and they eventually become insensitive to their patients.

The unending corridors and wards of a government hospital can confuse any first-time visitor. I remember on my first day at my department, I could not find the Doppler room though it was just around the corner from where I stood. So surely it is too much to expect an illiterate old man with his frail wife to find their way from casualty to x-ray to the ward on their first visit. Yet many of us would not bother to stop and help such a person in distress.

Medical humanities may be the means to halt this trend. Sensitising young minds, using the arts, literature, history and lessons on social issues, may bring about a paradigm shift in these doctors’ outlook towards their patients. However, for the humanities to be integrated into medical education, the current curriculum must be modified and made more clinically and socially relevant. Further, the humanities cannot be taught in lecture halls; they need to be integrated into all aspects of medical school. For this, the medical school faculty should be sensitised to, and trained in, humanities education.

As medical students, and then as doctors, we fail to read the anxiety and apprehension on our patients’ faces as they approach us. We are ruthless in the way we rush to finish with the long queue of patients. We are mechanical in inserting catheters, lines and tubes. We do not consider it necessary to explain procedures in detail, to calm the patient on the table. It is true that we are overworked and sleep-deprived, live in inhuman conditions, and must survive the taunts and tantrums

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of seniors. We have struggled through arduous entrance exams, toiled day and night for years to reach where we are. But as a result, by the time we realise our dreams of working as postgraduates, we have lost all our ideals. All the compassion, empathy and sensitivity we had when we entered this field have faded away.

Medical practice without the patient The divorce between medicine and the arts begins early in a student’s life, right from school. The studious, ‘brainy’ bookworms are segregated from their more creative, intuitive and imaginative classmates. The rigorous, rote-memory-based examination system throughout their medical education erases any creativity that they have, as they concentrate on memorising endless facts and answering non-analytical questions. When they graduate and enter the real world of clinical medicine, they are uncomfortable before the real people who come to seek their help. They forget that medicine is not just mastering facts and figures; it is an art in itself - the art of observing, recording, reflecting, and integrating the events around us. William Osler, described as the father of modern medicine, once said: “Care more for the individual patient than for the special features of the disease…Put yourself in his place…The kindly word, the cheerful greeting, the sympathetic look - these the patient understands.” (1) However, for some residents and doctors constantly in search of what is ‘publishable’, patients are mere cases. I have heard a radiologist looking at an MRI of a brain say, “What an amazing mass, just look how beautiful it is!” Just listening to him sent chills down my spine. I fail to fathom how a malignant mass in the centre of somebody’s brain constitutes beauty. We exclaim in awe at a unique presentation of a disease process, but we forget the suffering endured by that person. The situation is worse when one has paid an enormous amount just to enter the medical field or get a postgraduate degree. Add to that the ridiculous annual fees one is charged and you have doctors who graduate with only one thing in mind: to recover their investment. This attitude drains the disheartened student of any remaining trace of empathy. A patient is viewed merely as a source of income - and this the greatest injustice one can do to a suffering human being. In India, doctors can talk about a patient’s prognosis and chances of death while standing at his bedside. An invisible wall is created by doctors using the English language in the presence of their patients. Patients wait fearfully, while doctors discuss their fate in medical jargon, and that too, in an alien language. They wait for their turn to come, thinking that most, if not all of it, will be explained, only to be turned away with unsatisfactory replies. Sound clinical skills and a vast knowledge base form just one aspect of what comprises a good doctor. If the doctor is unable to communicate effectively with the patient in an easy and understandable manner, the purpose of medicine is not served.

What is needed: medical humanities Sensitising young minds using the arts, literature and documentaries can gradually bring a paradigm shift in their outlook towards the patient. Through literature and the arts, medical students will be exposed to a variety of cultures, living conditions and places of which they can have no personal experience. This will bring a broader perspective to their interaction with patients. The scope of the humanities is not limited to the undergraduate or postgraduate level. It will have a far reaching impact on how these future doctors will interact with, and be perceived by, the general public. Have we ever given a thought to what it is like to care for the terminally ill? To making life comfortable for a disabled child? Or even to what it is like to be bed-ridden with no feeling below the waist? There are innumerable sensitive pieces written by people in such situations. Making some of these works compulsory or suggested reading could transform a medical student’s attitude towards people in distress, and life in general.

Humanities and the medical curriculum For the humanities to be effectively incorporated into our medical curriculum the latter must be transformed. There are serious flaws both in the current medical school curriculum and in the method of teaching, acting as fire-extinguishers towards the scientific temper as well as creativity. The syllabus is not well defined. The learning objectives are unclear. Exam questions promote rote learning, instead of testing clinical and analytical skills. Even before they discover the magic of clinical medicine, these enthusiastic young doctors-to-be fall prey to the system of assessment based on memorising facts. Preparation for postgraduate entrance exams is not addressed in college, so students attend coaching classes at the cost of precious days of undergraduate training. Constant stress, competition and deadlines lead to tunnel vision, focusing on medicine alone, and extra-curricular hobbies take a back seat.

The way ahead Any change will require multiple revamps – in the curriculum, in teaching methods, as well as in the overall focus of medical practice. The medical curriculum must become more relevant, with basic sciences taught in the context of clinical practice. The curriculum must also be trimmed to cover the basics required at each stage. For example, ophthalmology and ENT should be made part of general surgery; they do not need to be taught in detail for an entire year. Community medicine must be taught in a more practical and interesting manner. The focus should be on India-specific problems rather than rare syndromes or uncommon presentations. Medical students in India should be aware of the bigger picture, the important health challenges that the country faces.

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Teaching and evaluation methods must change. For example, lectures should be made more interactive, with case discussions and seminars. Questions based on clinical skills should be given greater weightage in the postgraduate entrance tests.

literature can help broaden students’ horizons. Role play and poster making can be organised on social and health issues. Films and other media coverage of the topics being taught can be followed by informal open discussions.

An increase in the number of postgraduate seats will reduce the cutthroat competition that permeates the educational system and diverts students’ attention from their primary concern – the patient’s welfare. Most important, the obsession with specialisation should be removed by promoting the concept of a good, competent general practitioner or family physician (as in the UK), giving GPs special benefits.

The teaching should highlight socio-cultural differences and epidemiological variations in the disease under study. Public health education is critical - encouraging medical students to participate in rallies, camps and drives and organising street plays for the general public. Students should learn about the socioeconomic basis of illness, possibly by following poor families over the period of their medical education, in order to understand demographics, economics, sanitation, and health status. This will give them a sense of purpose and help them understand the larger context of health and disease in India.

How not to kill the baby at birth Before introducing humanities as a separate discipline, it needs to be integrated into daily classroom and bedside teaching. For this the first step is sensitisation and training of medical college teachers. Teachers are role models, setting standards for their students, for example, on how to talk to patients. However, not all teachers can teach the humanities. The degree of interest in humanities which can be generated amongst medical students will depend largely on the teacher. These teachers should be well trained and knowledgeable. It is important to use various teaching methods. Teachers can strengthen their arguments by referring to relevant medical history and contemporary events. Interaction with people working in other fields like performing arts, photography and

To achieve a balance between the head and the heart in the medical profession we need to infuse a sense of empathy from the very start of medical education, introducing medical students to the humanities at the time in their lives when there will be the maximum impact. Acknowledgement: I would like to thank Ulhaas Chakraborty for his valuable suggestions. Reference 1. Bean RB, Bean WB. Sir William Osler: Aphorisms from his bedside teachings and writings. Springfield: Charles C Thomas; 1961. p 97.

Medical humanities ... almost Neha Dangayach PGY4, Neurology, Case Western Reserve University, Cleveland, Ohio 44106 USA e-mail: [email protected]

Abstract Brought up in the traditional education system in a large teaching hospital in Mumbai, India, I moved on to do specialisation in neurology in the United States of America. The Indian system of pre-medical education mandates early choices between the humanities and the sciences and thus precludes a more wellrounded development of a student. Though medical humanities is not taught as a subject as part of the medical curriculum in India, listening to inspiring and learned teachers and the daily interaction with scores of patients who are willing to submit themselves to examination “in the cause of medical education” is a humbling experience to a sensitive student. I see similar willingness in patients in the United States. However, a formal course in the medical humanities, including arts, literature, and philosophy will surely enrich the experience of a larger number of undergraduates and postgraduates learning the core subjects and help in moulding a more rounded physician.

As a beaming 18-year-old I embarked on my medical journey, not knowing why I wanted to become a doctor; but I knew this was the only thing I had ever wanted to do. The Indian education system is extremely focused and warrants that we choose our paths very early on. At times, I felt that focus took away from a more well-rounded educational experience with exposure to various arts and sciences which would have helped broaden our perspectives. In my experience as a neurology resident, the medical students in the United States, when compared to Indian medical students, have had the chance to pursue a pre-medical course, whether it was learning a new language or anthropology, music or the fine arts, which perhaps, enabled them to make a better informed choice, by way of trial and error, as a result of the options they were able to explore. This article is by no means a comprehensive comparison of the different medical education systems in India and the United

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States. It is a narrative of what I have learned about the medical humanities and the teaching of medical humanities in India and the United States. There are certain personality traits which help us become good physicians; physicians who transcend the boundaries of age, religion, culture, and languages and heal, if not cure, to the best of our abilities. Medical humanities is that interdisciplinary union which seeks to identify all the qualities which make a good physician and helps young doctors in training to identify some of those traits in themselves and work towards becoming better human beings and better doctors in that process. The New York University website (1) defines “medical humanities” broadly to include an interdisciplinary field of humanities (literature, philosophy, ethics, history and religion), the social sciences (anthropology, cultural studies, psychology, sociology), and the arts (literature, theatre, film, and the visual arts) and their application to medical education and practice. The continuum of medical humanities starts as we step into medical school in India. Although, we do not have any repository of literature, arts, sociology, medical anthropology or philosophy; somewhere all these sciences and arts manage to seep through the voluminous accounts of the medical curriculum. Each aspect of medical humanities is touched upon, perhaps, not always by way of formal teaching but by means of examples sometimes knowingly and sometimes unknowingly. One of the best things I learned in medical school was “Non sibi sed omnibus” (Not for self but for all) and slowly but surely, all of us were being moulded into conscientious young physicians in medical school. Medicine has come a long way. We are diving deep into nuclei to unearth the secrets of life and death. We have learned a lot along the way, but human suffering has found new ways to challenge medicine every step of the way. Our standard textbooks tend to allude to history very briefly, and whether that manages to inspire awe or wonderment is a little unclear. Then, how do I remember the story of Insulin, Best and Banting? How did Pavlov’s dog become pop culture? That is because these stories were related to us by much admired teachers. As first year medical students, we had group discussions or dissections in rooms named after great Indian practitioners like Susruta, or Greek gods like Janus. The writing on the walls left an indelible mark on my memory, and on those of many of my classmates, and somewhere a small hope to make a bigger contribution to the field and take it forward was taking root. As I began my residency in neurology in the United States, and began teaching medical students on my service and then as part of my work of being an IQ group (a small case discussion group at the School of Medicine at Case Western Reserve University) facilitator, it only became more evident to me how different these systems of education were. Of course, grades or marks mattered in both systems but the approaches to medical education differed so much that I wondered how such disparate systems managed to produce equally good doctors. The emphasis on medical humanities in undergraduate and graduate medical education has managed to take the form

of various creative curricula across the United States. The New York University website is a good resource, providing links to other medical curricula as well as a searchable database for various literary, movie and pop-culture references to the medical humanities. However, there are very few instances of a formal medical humanities curriculum in India. Medical college curricula in India are based on factual learning. However, when we start our clinical rotations we learn a lot by observation. Humility, philosophies regarding healthcare, end-of-life care, discussions about death and dying, prognosis, and so on are all learned at the bedside by observing several members of the medical team lead by example. This learning by observation is very much a part of the teaching of medical humanities in the United States as well. Morality and religion in India are sometimes indistinguishable. Religious tolerance is an innate aspect of taking care of patients in India, which is usually not very difficult, as most of us have been exposed to various religious and cultural beliefs in our schools and colleges as much as in our homes. Praying with patients at the bedside was a direct extension of religious sensitivity as a physician and it helped foster greater faith and trust. In the United States, I have seen great pastoral care for patients at the bedside, and solitude in the places of worship at various hospitals. One can even choose to do a Masters program in theology to better understand religion and its role in healthcare but the basic tenet of being tolerant and respectful of all faiths, in health and more so in disease, is something we learned throughout our training in medical schools. As second year medical students, we get formal teaching in medical ethics as part of forensic medicine and also receive an introduction to the direct legal implications of our actions. What I learned about medical ethics was learned more because of the examples set by my peers, junior and senior house staff, and faculty members and patients alike. The onus of teaching the new breed of doctors how to be compassionate and ethical seemed to rest squarely on the shoulders of everyone who was involved in our learning of medicine. In a setting like the King Edward VII Memorial (KEM) Hospital, Mumbai, which is teeming with patients, patient privacy was not always easy to maintain; but most of our patients were also equally eager to share their stories of triumphs and tribulations with eager groups of medical students and letting us examine them over and over again to learn clinical exam skills; it was a universal phenomenon to hear that they were just happy that they were helping future doctors learn. This was the best example of selfless charity which was enriching my young mind each day on the wards. Here at Case Western, when I take one or two medical students with me to patients’ private rooms and ask for patients’ permission to allow my medical students to interview them or examine them, I come across the same eagerness, the same generosity. I find my task of preserving someone’s dignity as we learn or teach how to do a clinical exam much easier here than doing the same with a group of onlookers in a large ward full of patients. The patients however, seemed to be at equal ease in both environments.

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On the wards and in our clinics each day in KEM, we helped out in procedures or assisted in surgeries and watched various physicians take consent, discuss prognoses or answer questions posed by families to the attending physicians in front of the whole medical team and we learned each day how to communicate with patients; how to comfort their worried family members, how to inspire confidence in them; how to be gentle and how to be firm with patients who continually posed a challenge by being non-compliant or defiant. Now when I look back at those times I can clearly remember the god-like worship in the eyes of patients and their family members; and my memory doesn’t fail to echo the words: “We’ll do whatever you say, doctor saheb.” Was it a simplistic belief that the physician is always right? I wonder now: where did all that faith come from? How did physicians get elevated to godlike status? Does dealing with matters of life and death make us even half as omnipotent as the Creator? Was it the lack of awareness or lack of education or a matter of faith which defied reason? The adoration which patients and families had for their physicians was not something we were taught to expect as part of any formal curricula, but we just saw it each day, and that faith inspired us to strive to do our best, as someone was always counting on us to come through. Do I feel that I missed out on something by not having a formal curriculum to help me learn about medical humanities? To a certain extent I do. I wish I had taken the time to read and admire poetry and literature dealing with medicine; or learn about Leonardo da Vinci’s artistic renderings of scientific concepts. I felt that the emphasis on mastering concepts on which questions would be set deprived us of the time to stop and think about how we got here. Did that make me less compassionate or less appreciative of the wonders of modern medicine? It did not. Somehow, I managed to learn a little of

everything and my thirst for knowledge and search for the art in medicine and the medicine in art continues to become keener. A formal curriculum in medical humanities surely provides a wide array of choices, and increases awareness; but compassion, sincerity and humility we all learn by example, whether by setting our own or from our peers and teachers alike. We are fortunate to be living in a world where knowledge is freely available just like the air we breathe; it is only a matter of seeking it out. This availability of knowledge has also inundated us with surplus knowledge which we will find difficult to navigate and make the best of without the help of proper guidance. A well-structured curriculum in medical humanities will help decrease the reliance on experience alone; for instance, I was fortunate enough to train at the Seth GS Medical College, Mumbai, with some great teachers, but would I be as conscientious a physician if I hadn’t seen good medicine being practised as much? We need to increase standardisation among medical schools across India, so no matter where you train, you can avail of at least a good standard well-rounded medical education. Of course, the curricula should have enough scope for each institution to incorporate its own philosophy. There is no substitute for exemplary teaching but a formal curriculum dealing with medical humanities will enrich the time spent in medical schools in learning core concepts. I believe this kind of teaching, coupled with the current system of education, will enable us to produce more well-rounded physicians in India. Reference 1. Medical Humanities [Internet]. New York: New York University; c 1993-2012. Medical Humanities Mission Statement;1994 [cited 2012 Jul 3];[about 1 screen]. Available from: http://medhum.med.nyu.edu/

Whither medical humanities? Navjeevan Singh Professor of Pathology and Coordinator, Medical Education Unit, University College of Medical Sciences, New Delhi 110 095 INDIA e-mail: [email protected]

Abstract Understanding the Medical Humanities (MH) and their role in medical education is in its infancy in India. Students are initiated into professional (medical) education too early in life, usually at the expense of a basic grounding in the humanities, resulting in warped intellectual growth. The author, arguing against the wholesale import of foreign systems, advocates free inquiry by medical educators to evolve a humanities programme for medical students derived from our own cultural context. This essay describes the early experiences of efforts to make a beginning at the University College of Medical Sciences, Delhi.

The author reviews the various strategies used and the challenges of introducing the subject to the current generation of medical students.

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Don’t you ask yourself why you are being educated? Do you know why you are being educated and what that education means? As we know, education is going to school to learn how to read and write, to pass examinations, and to play a few games; and after you leave school, you go to college, there again to study very, very hard for a few months or a few years, pass an


examination and then get a job; and then you forget all about what you have learned. Do you understand what I am talking about? Isn’t that what we all do?

course, to crack the postgraduate entrance exam. Success does not necessarily earn the right to pursue a postgraduate career in a subject of one’s choice. Depending on performance, a person wanting to become a gynaecologist may well have to settle for being a pathologist. There is a hierarchy to the choice of subject, which is often determined by considerations of monetary returns from the workplace.

-J Krishnamurti (1)

Background Why do we need to educate medical students in the humanities? Let me begin with an outline of the path to higher education in India. Consider a child’s trajectory from early school to higher professional education. The school-going child is encouraged to learn by rote. The ability to recite or reproduce memorised text is rewarded at each step. Little effort goes into developing the higher cognitive abilities of comprehension, analysis, synthesis, and evaluation of knowledge. At barely 15 years of age, the need to make a career choice is thrust upon the hapless child. Our educational system assumes precocity beyond the ability of most 15 year olds to decide career paths for themselves. Perforce, ambitious parents make the surrogate decision to prepare the child for a professional career of their choice. Parents may know what is best for their child in matters relating to food and friends, but they may make the wrong choice considering the long-term consequences that a professional career entails. On the other hand, few adolescents are equipped for such a choice either. Often, a child’s preparation for a professional career begins with enrolment in a coaching institution whose aim is to equip aspiring young minds with a solitary skill: how to crack the entrance examination of their choosing by honing their ability to memorise. Then follows a hectic round of classes tailored to the nuances of each separate entrance examination. For the next four years, from the age of 15 to 18, when these children should have been discovering themselves and their world, their likes and dislikes, inclinations and attitudes, they lead a blinkered existence with the solitary goal of entering an engineering or a medical college regardless of the aptitude required for these careers. We, the parents, teachers, and policy makers, never inquire about our children’s true vocation or interests. At 18, the rigours and demands of professional education deny our adolescents the chance to grow, to understand themselves, to come to terms with the world around them, and to decide on their own course. Far from bringing relief, the joy of those who succeed in entering a professional course is destined to be short-lived. Soon the realisation comes that the years of self-denial are going to last a lifetime. The struggle worsens when parental pressure to perform mounts. Many are told, “Now that you are here, at least continue and finish the undergraduate course.” There is no way out for the unfortunate trapped soul but to continue. The heavy investments in intense coaching cannot simply be discarded for a new career choice. The misery does not end there. Three years into the MBBS course, the spectre looms again post-graduate admissions are on the horizon. Then follow another two-and-a-half years of intense coaching, beginning in a critical phase of the MBBS

It is not uncommon in our medical institutions for postgraduate trainees, untutored and unskilled in the nuances of teaching, to shoulder all teaching responsibilities in small groups, where teaching is said to be most effective: tutorials, demonstrations, practicals, and at the bedside. The faculty recruited to “teach’” confines itself to the least effective form of teaching - taking lectures, often speaking to large crowds of 150 or more bored, listless students. Small wonder then that the commonest graffiti etched indelibly into the wooden desks, and in the minds of the students, reads “In memory of those poor souls who died waiting for this lecture to finish.” Taking teaching beyond the classroom is viewed as an esoteric pursuit best confined to philosophers and the unbalanced. To ensure full classes, institutions resort to compulsory attendance, resulting in vicious cycles of frustrated teachers and increasingly uninterested students. Oppression is the name of the game. That many of our students survive the ordeal that we call a medical education, and actually go on to become outstanding physicians and compassionate human beings, is a tribute to their resilience, strength of will, and indomitable spirit.

The need for humanities in the medical curriculum Nowhere in the scheme outlined above is there a place for the growing adolescent to be exposed to the humanities. Even a passing acquaintance with subjects like languages, history, philosophy, and the arts is simply not possible for those who are herded into professional education by this route which, unfortunately, is the rule rather than the exception. Language skills suffer the most. One has only to struggle through identical written answers, mistakes and all, in hundreds of answer sheets at any examination to comprehend the extent of the problem. The phenomenon is neither new, nor unrecognised. In an interview (2) with a prominent newspaper, Venkataraman Ramakrishnan, winner of the Nobel Prize in Chemistry in 2009, said it all: “I grew up in the Indian system and I, unfortunately, had to choose between humanities and science in high school. I’m making up for it. I’m learning Spanish. I’ve to take an exam in January. “ Is introduction of humanities during the MBBS course a way to correct the imbalance created by several years of mindless pursuit of a single, mindless goal: to obtain a professional degree in as few years, and as early in life, as possible? How do we take our students beyond the defined curriculum, into pursuits which at first appear to have no tangible benefits to their immediate, short-term goals? Force, as in structuring a humanities curriculum into the medical, creating yet another examination to pass, yet another hurdle to clear, marks, evaluations, the fear of failure, cannot be an option. In the

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words of the eminent thinker, philosopher and educationist J Krishnamurti, “we should create a school where the student is not pressed, is not enclosed, is not squeezed by our ideas, by our stupidity, by our fears, so that as he grows, he will understand his own affairs, he will be able to meet life intelligently. “(1) We are at a stage where we have the unparalleled opportunity to do the right thing. Transplanting other’s ideas of the medical humanities into the Indian cultural context may appear to be the easy way out, but is likely to be counter-productive in the long run. The onus is on us to think this one out for ourselves. How is it possible to awaken the over-burdened mind to new thinking, to new horizons? At the University College of Medical Sciences (UCMS) we have been asking these questions and seeking answers. Clearly, it is not easy to decide what to do. To change established thinking and behaviours is a time consuming, uphill task calling for the patience of Job. We need committed people, a conducive environment, and the understanding that we may not see the result of our labour in our lifetimes.

“Medical”? humanities My hope and wish is that one day, formal education will pay attention to what I call “education of the heart”. Just as we take for granted the need to acquire proficiency in the basic academic subjects, I am hopeful that a time will come when we can take it for granted that children will learn, as part of the curriculum, the indispensability of inner values: love, compassion, justice, and forgiveness (3). What is meant by medical humanities (MH)? MH is an unfortunate term that suggests that medical humanities are different from the humanities taught in general arts colleges. Use of this phrase propels us to find a medical angle to everything that the medical student may have to do with the humanities. In that sense, it is restrictive, and only serves to perpetuate the myth that study of the humanities is not essential to the student of medicine. That the medical student’s interest in the performing arts, music, literature, history, culture, and other similar subjects can only flourish when given a medical twist is rather irrational thinking. Arguably, if the learner has a basic foundation in the study of humanities, the experience can be directed to unravelling the mysteries of medical relationships. Currently there is a void in the students’ minds created by the missing humanities education in their school and college years. We need to fill this void. To grow, the learner must be provided with a steady stream of knowledge, the luxury of choice, and a non-threatening environment.

Our experiments with the humanities At our institution, we took our first baby steps three years ago. Using subliminal advertising and guerrilla tactics, we began by setting up a small group of interested students and faculty. In deference to the prevailing wisdom of the time we called it our Medical Humanities Group (MHG). We have experienced much scepticism, even derision, in the community, but it seems to be

gradually giving way to hesitant curiosity. Strangely, members of the group seemed to have no misgivings. One of the earliest activities that we indulged in was to try and bring about awareness and respect for the environment. An undergraduate student took the initiative. Being a singer, he wrote and sang a song bemoaning the plight of the polluted river Yamuna in Delhi, likening the river to a life-giving mother. He followed this up by organising a tree plantation exercise in the campus. Three people planted saplings, while two others looked on! It was the wrong time of year to be planting, and the saplings were in the shade of a large tree, in the path of pedestrians taking a shortcut from the college canteen to the car park. The plants did not survive the week. It was our first lesson in learning the odds that faced us. The Society for Promotion of Indian Classical Music and Culture among Youth (SPIC-MACAY), a well-known volunteer organisation that facilitates performances in educational institutions worldwide by eminent artists, began small. A role model for the success that volunteerism can achieve, it graciously provided us with our first real opportunity. We are inspired by the selfless quality and quantity of its members contributions to their cause, which is very similar to promoting humanities in medical education. Awareness and appreciation of the performing arts by Indian classical artistes is gradually increasing at UCMS. In the first year, the main hurdle that we faced was finding an audience for the performances. Our students and faculty were indifferent, simply not interested. With time that is changing too, as successive batches of students volunteer in and contribute to organising these events, the numbers are beginning to add up. During this period we explored other avenues. Our students wrote and performed a street play, under a banyan tree in the college compound, for the MHG. Titled “We all have AIDS”, the acronym standing for “academics-induced degeneration syndrome”, the play took a clever dig at the difficulties faced by students trapped in the rat race of gaining a medical education. A small number of students attended a reading session, where everyone was required to read a literary passage or poem. The participants had never realised that reading could be an art form. Listening to an audio recording by Zia Mohiuddin, famed Pakistani performer and exponent of the art, quickly dispelled that notion. There is always hidden talent within the community. We stumbled upon a painter and a photographer of uncommon ability in one of our residents. He obliged the MHG by exhibiting a collection of his work at the institution. In our effort to spread awareness of the humanities we have invited speakers from diverse fields, including a linguist, a rationalist, a prominent journalist proponent of the Tibetan people’s struggle for freedom, and a leading role model for persons with disability. Infinite Ability, a support group for disabled students, conceived and established by a prominent member of the MHG, is currently engaged in this area. Early in 2011, we had Dr Radha Ramaswamy facilitate a two-

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day workshop in “Theatre of the oppressed”. A form of people’s theatre devised by the Brazilian visionary Augusto Boal, it had a profound and lasting impact on our group, for whom it was a cathartic experience. In contrast to most other activities where the participants are passive onlookers, this demands active involvement. The workshop encouraged participants to look inward and examine many of the troubling questions raised in the earlier part of this article, and helped them find their own solutions, come to terms with themselves and their environment, and see themselves as people of high intrinsic worth. Many communication and interpersonal skills learned in the workshop have the potential to be profitably used in the classroom. The dedication, time and effort of committed individuals is very encouraging. However, how our experiences will translate for use in large classes and in imparting actual, hardcore, “medical” training is still unclear. We have made a small beginning; where do we go from here? Chalta hoon thodi door har ik raah-roh ke saath; Pehchanta nahin hoon abhi raahbar ko main (4). (I look to every fellow traveller to show me the way; I do not yet recognise the messiah.) When we cease to seek, we shall no longer progress.

Conclusion Students entering professional medical education in India are disadvantaged by the lack of basic education in the humanities.

In this essay I attempt to examine the reasons for this void as also to share my personal experiences and efforts to restore a balance. To keep the avenues of inquiry open, I refrain from offering solutions or recommendations. Instead, fresh thinking in the Indian cultural context is advocated. References 1. Krishnamurti J. What is education? In: Krishnamurti J, editor. Talks with students Varanasi: Krishnamurti Foundation India; Fifth reprint. 2009; pp1,5. 2. Gupta S. ‘Some (cancer) treatments are offshoots of molecular biology (It) will be very exciting’. Interview with Venkataraman Ramakrishnan. The Indian Express .[Internet]. 2010 Jan 4[cited 2012 Jan 23]; Available from: http://www.indianexpress.com/news/some-cancer-treatmentsare-offshoots-of-molecular-biology...-it-will-be-very-exciting/562906/0 3. Tenzin Gyatso, His Holiness the 14th Dalai Lama. Public lecture [Internet]. 2011 Dec 12[cited 2012 Jan 23]. Available from: https://plus.google.com /108551811075711499995/posts/PzysaPAv927?service=peoplesense 4. Asadullah Khan “Ghalib”. Deewan-e-Ghalib. New Delhi: Anjuman Taraqqi Urdu (Hind) , 1999; p76. Links to further reading Medical Humanities at UCMS: http://MedicalEducationUnit.yolasite.com/ medical-humanities.php Radha Ramaswamy and TO: http://www.ccdc.in/ SPIC MACAY: www.spicmacay.com Zia Mohiuddin: http://www.youtube.com/watch?v=cpEqMqDwlgA Disability: http://infiniteability.yolasite.com/

Integrating medical education with societal needs R Krishna Kumar Department of Paediatric Cardiology, Amrita Institute of Medical Sciences, Cochin, Kerala 682 041 INDIA e-mail: [email protected]

Introduction This paper attempts to present a case for serious reforms in medical education with the primary purpose of sensitising future generations of medical graduates to what our society actually needs from healthcare providers. It is not meant to be a scholarly exploration of how healthcare should be provided in our country from the point of view of policy makers or professionals in the field of public health.

to help connect us with the society that we hope to serve. The last part of the article will suggest the way forward and how medical education in India should be restructured.

Background: Indian healthcare delivery

While lamenting the unwillingness of our fresh doctors to serve rural populations, I would argue that sensitising them to the need for this during their training will allow them an insight into this dimension of “doing good”, and may motivate them to voluntarily be a part of this vast and important part of rural healthcare in India.

Healthcare delivery in India has been in a state of crisis for many years. This crisis has, however, escaped public consciousness, which is largely occupied by issues brought to the surface by events that attract media attention. For some reason, the total state of chaos and the extraordinary contradictions that exist in healthcare delivery to the average Indian citizen have not been considered important enough to merit a public debate. Most significantly, some of the brightest minds of the country that have chosen to become doctors are completely oblivious to the magnitude of the crisis.

The first part of the article will broadly identify the major failings in healthcare delivery to the average citizen. I will then try and identify how our present medical education system fails

The core issue that underlies this crisis is that Indian healthcare is not organised in accordance with societal needs. In most countries with relatively good human development indices

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Figure 1: This illustrates an example of the situation with coronary artery disease. Today, it has perhaps emerged as one of our significant problems affecting a substantial proportion of the population. The disproportionately high compensations offered for procedure-based services contribute to serious inequity. Most healthcare providers would prefer to be associated with services that offer the most compensation even if their services benefit a smaller proportion of individuals.

(Cuba, Costa Rica and Sri Lanka are examples), the government healthcare network supports much of the primary and secondary level healthcare. This allows delivery of basic services in accordance with healthcare needs and priorities.

known that government subsidies in India do not reach the poorest. Most of the subsidies are consumed by the relatively affluent because of flawed distribution (2). ü Very little emphasis on preventive services at all levels: While

preventive services are extremely cost effective, only a small proportion of healthcare providers are actively involved in supplying them. There are few incentives for provision of preventive services in the private sector, and the government sector suffers from poor accountability (3).

Since independence, the role of government in catering to healthcare needs in India has progressively diminished. More importantly, there is considerable erosion of standards in services provided by the government, together with substantial deterioration of the quality of many medical colleges. The burgeoning private sector in India was in a position to step in and fill the increasing void left by the government sector. Unfortunately, it has developed like any service sector industry, driven almost entirely by market forces. Even today it remains largely unregulated, aggressively seeking a market for its services. Unfortunately, illness affects everyone regardless of economic condition and most illnesses can be managed without procedures. Today’s healthcare crisis is a simple reflection of the fundamental disconnect between the actual health priorities of the population and what the existing healthcare delivery system is seeking to provide.

ü Absence of an effective national programme or policy for many

common illnesses that affect Indians, particularly the rural poor(4). ü Disproportionate growth of procedure-based services as

against cognitive services, since they offer a much higher compensation (Figure 1)(5). ü Inappropriate

recommendation of expensive diagnostic and therapeutic procedures for situations with marginal or doubtful benefit (6).

ü Wide-spread acceptance of unethical practices: Malpractices

such as cut practice for patient referral are no longer considered unacceptable by most members of the Indian medical fraternity today (6). ü Promotion of international medical tourism in the face of

Aspects of the crisis The examples below illustrate the disconnect between societal needs and the manner in which healthcare is delivered in India. ü Inequity: This is the most striking feature of dysfunction of

healthcare delivery in India. Inequity in healthcare manifests itself in stark contradictions: highly sophisticated healthcare facilities co-exist with extreme deprivation of the most basic services. Wide geographical variations in basic health indices are also a manifestation of inequity (1). ü Inappropriate distribution of government subsidies: It is widely

serious domestic inequity (7).

Medical education: where it all began The origins of this deeply dysfunctional situation in our healthcare system canbe traced back to our medical education. The seeds of societal disconnect are sown in the formative years of medical education (Figure 2). Reflecting on my own years as an undergraduate in Maulana Azad Medical College and as a postgraduate at the All India Institute of Medical Sciences, I recall that the brightest among

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us chose to settle overseas, mostly in the United States and England. The motivation to move out was not necessarily money. All those who left felt that the existing opportunities in India would not satisfy them intellectually. This trend has persisted even when it is increasingly obvious that there are many more opportunities in India, an emerging economy; rather than in the US, wherehealthcare opportunities are on the decline. Very few visualise the prospect of making a much larger impact in the health sector in India where there is a strongly felt need for quality professionals. It is increasingly apparent that with every generation there is a growing disconnect between our medical students and the society they live in. Why do we, in our formative years, seldom develop a deep desire to serve the society that we live in? Why do medical students graduate without internalising the healthcare priorities of the country? The most academically accomplished young doctors do not necessarily find the health challenges in India intellectually stimulating, and choose to leave the country. Why are we unable to harness their intellect to address the nation’s problems? Reflecting on my medical school curriculum and the academic environment I grew up in, I realised that the overwhelming emphasis was on acquisition of technical and scientific

knowledge. Medical ethics received minimal attention. I do not recall discussing case studies that raised serious ethical questions. We had absolutely no understanding of the microeconomics of healthcare in India. We were completely unaware that the huge expenditureof most familieson healthcareis a major cause of debt in rural families. The serious shortcomings in our national health indices were seldom discussed in detail. While interacting with patients, we were encouraged to limit ourselves to information that had a bearing on what could have contributed to the patient’s illness. We specifically distanced ourselves from details that the patient and his family were keen to share, if we did not consider them relevant to arriving at a diagnosis. We made little effort to understand the impact of the patient’s illness on his or her livelihood. We often did not try to determine whether his or her economic condition would allow adequate treatment. There were very few role models among senior physicians who displayed and encouraged a high degree of compassion and were seriously interested in the social and economic condition of their patients.

What is the way forward? What is urgently needed is perhaps not a newer and better technology, but deeper integration of the existing technology

Figure 2: This figure attempts to trace the roots of today’s dysfunctional healthcare delivery system in India to the failings of its medical education. The pool of today’s doctors contributes to medical schoolteachers of tomorrow. Often the most “successful” among today’s doctors become health policy makers of tomorrow who then perpetuate the dysfunction. [ 171 ]


with societal needs. Because of the increasing costs and complexity of healthcare delivery, there is a critical necessity to be familiar with the social and economic determinants of healthcare. This can only happen through an understanding of the society we live in. Medical education in its current form does not equip medical graduates to cope with the demands of the increasingly complex healthcare environment of the future.

A wish list of disciplines and subjects for inclusion in medical college curricula of the future National health indices ü Relationship of health indices to human development ü Regional variations (geographic inequity) ü International comparisons

Social, economic and cultural determinants of health

If we are able to reorient our medical education significantly and start producing a generation of doctors that is sensitive to societal needs, they could potentially contribute to stemming the rot that has set in. A critical mass of enlightened doctors can potentially influence health policy. Policy makers and regulators who emerge from this pool of sensitised doctors can have a strong impact on the health policies of the future.

ü Education, income, specific cultural practices

Health systems ü Governmental health systems: structure, organisation, and

shortcomings ü Alternative providers: private sector, NGOs

It is clear that the undergraduate medical curriculum has to be drastically restructured. This can perhaps be realistically achieved over an extended time frame. Such a restructuring will require inputs from a wide range of experts including social scientists, practising doctors, public health experts and health administrators.Tomorrow’s doctors need to be grounded in the cultural, social and economic determinants that influence health and healthcare delivery. More attention needs to be devoted to the most significant national public health priorities, determinants of various national health indices, and rapidly changing lifestyles as consequences of urbanisation and globalisation. The shortcomings and failings of government healthcare delivery structure at all levels need to be emphasised. The role and impact of the private sector, regulations of healthcare, and the micro and macroeconomic impact of heath should also receive emphasis. A wish list of some of the areas that will need to be integrated with undergraduate medical education is listed in the accompanying table. While postgraduate training could be hospital-based, the focus for undergraduate education should move towards the community. Adoption of representative families by medical students in the region served by the medical college can help create a deep connection with the community. Students could adopt and follow families that have one or more members affected with significant illnesses and obtain a first-hand understanding of how they impact the lives and livelihoods of the affected families. The complexities of healthcare delivery would be apparent and this will help them develop as more insightful and sensitive doctors. A mandated period of rural service can be a life changing experience if carefully supervised. This period can be used by the medical student to develop insights into social and economic determinants of health and the failings of available healthcare delivery systems. With serious erosion of ethics at all levels, it is vital that tomorrow’s doctors receive comprehensive education in medical ethics. This is perhaps most effectively done through practical case studies. Examples of ethical dilemmas, and ethical

ü Inequity in healthcare

Regulation of Indian healthcare ü Medical Council of India: original role envisioned and

actual impact ü Other regulatory authorities: drug controllers, state medical

council ü Regulation of hospital and clinics

Ethics in medical practice and clinical research ü Relationship of the medical fraternity with the healthcare

industry

The economics of healthcare ü Government and private insurance providers ü Microeconomics: impact on individual families ü Models of cost-effective medicine

Healthcare planning and policies: core principles ü Defining health priorities and resource allocation

Practical training and workshops ü Communication with patients and their families ü Case studies in ethical dilemmas ü Case studies in ethical violations ü Economic and social impact of illness on individuals and

families

violations should be discussed in carefully structured sessions. This should cover medical research and clinical practice. The relationship between the medical fraternity and the device and pharmaceutical industry should be discussed. The lost art of communicating with patients needs urgent attention. Medical students need to be taught how to communicate with patients on a wide range of issues. In the 28 years that have elapsed since I graduated, I have consistently learnt that it is richly rewarding to get seriously interested in

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our patients’ lives. This is something that traditional medical education does not necessarily encourage. Some questions that we seldom ask when we evaluate patients are actually of tremendous importance. A few examples could be: How far did you have to travel to get here? How is your family coping with your illness? How will your family cope till you recover? How will you pay for your treatment? A genuine and heartfelt enquiry into the lives of our patients almost invariably helps us connect emotionally with them. This may transform relationships, establish a great deal of trust and eventually enable a much better outcome. There are successful models of affordable healthcare delivery that have been developed in India. The Aravind Eye Care System is a good example of an innovative network that can be afforded by those living at the bottom of the economic pyramid (8). There are also successful examples of low cost medical implants developed and manufactured in India, such as the Jaipur foot (9) and the Chitra heart valve(10). These accomplishments should serve as a source of inspiration for many of today’s medical students. There are a number of examples of innovations in healthcare that do not find their way into the mainstream consciousness of medical students. It is necessary to contextualise our curricula not just to identify our unique healthcare needs, but also to identify and study successful innovative practices in affordable healthcare in India and the rest of the developing world. A number of additional measures are worth considering. A system that uses the services of a large number of medical graduates to deliver primary healthcare appears to be an attractive prescription for some of the failings of our health systems. Unfortunately, most state governments have failed to implement compulsory service among under-served populations for medical graduates. The virtual collapse of primary healthcare networks in many areas of the country does not allow for adequate supervision of care delivered

by inexperienced doctors. It may be worth exploring the possibility of a mandated rural service of medical graduates after a thorough examination of specific shortcomings that come in the way of successful implementation.

Conclusion The crisis in healthcare in India today stems from a serious disconnect between healthcare delivery and societal needs, the roots of which can perhaps be traced back to seriously flawed medical education. This can only be remedied through a drastic restructuring, with thoughtful inputs from a wide range of disciplines that includes sociology, economics, ethics and public health. References 1. Balarajan Y, Selvaraj S, Subramanian SV. Health care and equity in India. Lancet. 2011Feb 5;377( 9764):505-15. Epub 2011 Jan 10. 2. Mahal A, Yazbeck A, Peters D, Ramana GNV. The poor and health service use in India. Washington, DC: World Bank: 2001. 3. O’Donnell O, van Doorslaer E, Rannan Eliya RP, Somanathan A, Adhikari SR, Harbianto D, Garg CC, Hanvoravongchai P, Huq MN, Karan A, Leung GM, Ng CW, Pande BR, Tin K, Tisayaticom K, Trisnantoro L, Zhang Y, Zhao Y. The incidence of public spending on healthcare: comparative evidence from Asia. World Bank Econ Rev. 2007; 21(1): 93-123. 4. Patil AV, Somasundaram KV, Goyal RC. Current health scenario in rural India. Aust J Rural Health. 2002;10:129–35. doi: 10.1046/j.14401584.2002.00458.x 5. Gangolli LV, Duggal R, Shukla A. Review of healthcare in India [Internet]. Mumbai: Centre for Enquiry into Health and Allied Themes. 2005[cited2012 May13], Available from: http://www.cehat.org/go/ uploads/Hhr/rhci.pdf 6. Yesudasan CAK, Behaviour of the private sector in the health market of Bombay, Health Policy Plan.1994;9(1):72-80. doi 10.1093/heapol/9.1.72 7. Sengupta A. Medical tourism in India: winners and losers. Indian J Med Ethics. 2008 Jan-Mar:5(1):4-5. 8. Rangan VK, Thulasiraj RD. Making sight affordable (Innovations case narrative: The Aravind Eye Care System). Innovations.2007 Fall;2(4):3549. 9. Sethi PK, Udawat MP, Kasliwal SC, Chandra R. Vulcanized rubber foot for lower limb amputees. Prosthet Orthot Int. 1978 Dec;2(3):125-36. 10. Bhuvaneshwar GS, Muraleedharan CV, Vijayan GA, Kumar RS, Valiathan MS. Development of the Chitra tilting disc heart valve prosthesis. J Heart Valve Dis. 1996 Jul;5(3):448-58.

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Embracing the unknown: introducing medical humanities into the undergraduate medical curriculum in India Radha Ramaswamy Centre for Community Dialogue and Change, A-6, Grasmere Apartments Osborne Road, Bangalore 560 042 INDIA e-mail: [email protected]

Abstract

about their profession and about their own relationship to it.

Medical education fails to address the medical student’s many questions, doubts and anxieties about his profession and his own relation to it. Students’ growing disillusionment with the profession and increasing disconnect with the realities of the healthcare scene in India have reached critical levels, resulting in a general clamour for reform of the medical curriculum. Many look towards medical humanities for the answer to the problem.

The need for curricular reforms, long overdue, is felt across the board by all stakeholders, even if the nature of the needs, and their articulations from different quarters, might vary. As we try to address this urgent demand for change, and look hopefully towards ‘medical humanities’ as the shape this change might come in, it is important that we carefully examine some of the debates around it, and try to create a model appropriate to our own context.

Referring to some of the available western thinking and practice of medical humanities (MH), this paper recommends the evolution of an indigenous model which will draw on the growing body of new scholarship on India in the humanities and the social sciences. Some guidelines are offered for starting an MH programme, stressing the need for a flexible and broad-based approach, and a participatory pedagogy focused on students’ needs, that draws creatively on available resources. Rather than viewing the ‘arts’ as a discrete addition to our personalities, an MH programme needs to show us how to integrate the multiple facets of our personalities. I am certain of nothing but the holiness of the heart’s affections, and the truth of imagination.

Rather than outline a one-size-fits-all blueprint for an MH programme, this paper will suggest some essential features for a course that can address some of the deficiencies in the undergraduate medical curriculum. Suggestions will be offered on how a college might go about starting an MH programme. Understanding and articulation of the approach is emphasised, rather than valorising specific disciplines over others, or listing syllabus items. At this prenatal stage in the life of the MH programme in India, it seems vital to get the approach right, rather than work out details of the course content.

Medical humanities – a definition?

— John Keats

Background In September 2010, about 100 people, medical teachers and students, administrators and policy makers gathered in Mumbai (1) to discuss reforms to the medical curriculum. The round table revealed a fundamental and glaring feature of medical education in the country: students who enter medical colleges with a desire to be good doctors seem to lose belief in this possibility in the course of their education. That may seem like a deliberately provocative statement to make, but that is not the intention. From what students at this round table shared, and based on formal and informal interactions with medical students and faculty over the last year and a half (2), it would appear that the definition of ‘a good doctor’ undergoes drastic reshaping in the course of medical education, mostly resulting in a whittling down of the comprehensive original image. Often this happens in deference to what is loosely referred to as ‘the demands of the time’- which includes the strong influence of available role models, the prevailing medical culture , and the inability of the curriculum or medical teachers to satisfactorily address students’ experiences of anxiety, disillusionment or doubts

First, what MH is not: MH is not a syllabus to be covered in a certain number of weeks or months. It is not a set of communication strategies a medical student can pick up, to make a patient feel cared for –‘Greet a patient with a smile, introduce yourself, sit down on his bed, do not appear to be in a hurry’. MH is a bold and continuous search for connections between medical practice and the realities of our world. It is an attempt to challenge one’s own assumptions about ‘how things have to be’. It is an enrichment of the mind and the soul through exposure to diverse knowledge systems, learning to see with the imagination, and feel what you dare not feel. It is an education in confronting contradictions within oneself. It is an encouragement to rest in the unknown, without fear or the urge to seek immediate resolutions. Can doctors have doubt? If a doctor makes a mistake, can he acknowledge it? Is it possible to build a patient-doctor relationship in a non-adversarial mode, in a climate of non-fear? How can doctors in the making deal with their doubts and fears about their own inadequacies, about competition, about the ‘industry’ that the medical profession has become, about the fading idealism? An MH programme can address these and similar questions.

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We in India are latecomers to the field of MH, or at least to the formal introduction of the discipline in the medical curriculum, and thus have an opportunity to learn from the pioneers. The Centre for Medical Humanities in London offers the following definition: “Medical humanities is an interdisciplinary and increasingly international endeavour that draws on the creative and intellectual strengths of diverse disciplines, including literature, art, creative writing, drama, film, music, philosophy, ethical decision making, anthropology, and history in pursuit of medical educational goals.”(3) The definition emphasises that the arts and the humanities, if introduced in the medical curriculum, are to serve the ‘pursuit of medical educational goals’. The need to show a direct relation between the introduction of the arts and humanities and professional benefits for the medical student is thus emphasised. For example, if residents are asked to discuss a poem, the purpose of the activity is not to improve their literary analytical skills (though that may also happen incidentally) but primarily to fulfil the goals of their medical education. Such an instrumentalist definition and approach is followed in most colleges offering MH. But many ask: Isn’t an introduction to the arts and humanities ‘good in itself’? Isn’t it demeaning to the arts and humanities to attempt to make them serve the purposes of medical education? And how is it possible to prove their benefits to the medical profession? All the available writing on the subject corroborates the view that an introduction to the humanities (taken broadly to refer to all the subjects mentioned in our definition above) has multiple benefits — immediate and long range — impacting the student-doctor both as individual human being, and as professional (4-6). For example, working with complex literary texts enhances students’ ability to understand the complex nature of communication, and impacts their interactions with patients, their families and their colleagues. It also sensitises them to the role of social and cultural factors on patient behaviour and that of caregivers.

Some guidelines for the introduction of an MH programme An MH programme seeks to address the needs of medical students not addressed by the regular MBBS curriculum in India. These relate to an individual’s emotional responses to the experience of becoming a doctor, of gearing up to practise medicine in a world that challenges many of the assumptions underlying medical education, of learning to be a professional with a clear sense of social purpose. Although individual medical colleges will deal with these issues based on their stated mission and vision, the administration, the faculty, and the profile of their students, and therefore, should design MH programmes to suit their particular needs, it is possible to set down some broad guidelines (8).

The preparation Some suggestions as we prepare ourselves for this unfamiliar task: 1. A meeting of all students (not just those who will be in the programme) and interested faculty to brainstorm the question: Who is a good doctor? Compile a list of qualities prioritised by the group. This will help give direction to the process of framing the syllabus. 2. Identify major areas for study. Each person narrates a real incident from their time in medical college that posed a conflict, raised questions or created doubts. Generate a list of unresolved questions and conflicts that plague medical students through their years of training. This will help identify issues that an MH programme can address. 3. Set down the objectives of the MH programme, first broadly, and then more specifically as they will be addressed in a particular institution. These could include: a. helping learners to become aware of, and understand the impact of class, caste, gender, language and other socioeconomic and cultural factors on illness, how patients and their families respond to illness, and how they, as doctors, interact with patients and their families.

Perhaps the most significant departure from this originally ‘western’ thinking about MH is summed up in the following words. Addressing “…the mismatch between the claims of medical science and the broader effects of … the culture of medicine in India today,” the authors ask “whether ‘better’ educational practices, ‘updated’ curricula, ‘better’ management, and raising awareness about ‘gender sensitivity’ were adequate strategies … [or]coming to grips with these questions would require inputs from new scholarship on India in the social sciences and humanities, an in-depth assessment of the current deficits in the practice of medicine, and careful reflection on the specifics of responsive and responsible practice.” (7) While we should be wary of getting bogged down in debates about definitions, they will assume great significance for curriculum planners, faculty and administrators as they begin implementing an MH programme in their institutions.

b. enhancing learners’ ability to recognise, understand and respond sensitively to the multiple perspectives and different value systems as they operate in interactions with their patients, patients’ families, and their colleagues. c. sensitising learners to the complex nature of communication, and developing the skills of listening to and interpreting narratives by patients, their families and their own colleagues. d. encouraging and developing skills in learners to become reflective practitioners.

A. Planning the programme Ideally, the MH programme should be mandatory for all

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students, and I would argue for the inclusion of some elements of MH in the curriculum every year of the undergraduate medical programme. But initially, institutions might face several challenges and constraints. Therefore, I urge colleges to start the programme, with whichever of the following models works for them, keeping in mind the essential principles of the programme. After all, flexibility is at the heart of the subject. ü Regular and mandatory weekly classes for students in the

first two years of medical education. ü A voluntary programme based on the arts and humanities

with a choice of electives. ü A series of seminars, conferences, and talks on issues both

medical and ‘non medical’, ranging from euthanasia to genetics to ethnicity, illness, gender and violence. ü Short-term courses based on any one of the arts

One university that conducted a voluntary programme spread over six months, with weekly sessions of two hours each, records that the feedback was truly remarkable for a course that occupied so little of the participants’ time (4).

B. Methodology: learners, faculty, and course content To fulfil the goals of the programme, irrespective of the model adopted, the methodology needs to bring into alignment three key components of the course - the learners, the faculty and the course content –in order. 1. The learners: To achieve its goals, the MH class has to be a safe space, allowing free sharing of ideas and opinions. Small groups of five or six encourage all learners to participate. If this is impractical, a facilitator can introduce an activity to a large group, split them into small groups for discussions, and have each group report to the class when the task is completed.

The programme needs to be learner-centred, and learnerfriendly. Identifying learner needs has to be a continuing process throughout the course, mandating learner feedback throughout.

2. Identifying faculty: The chief purpose of the MH course is to provide inputs not provided by the regular medical curriculum. Therefore the more diverse the team teaching the MH course the better. If there are faculty interested in some of the arts, or having a deep knowledge of non-medical disciplines such as sociology or philosophy or literature or drama, it would be an excellent idea to let them develop course material from their areas of interest. As we are injecting something new and unfamiliar, an orientation for the regular medical college faculty is essential, and this can come from a person from a humanities background. In the initial years such a person needs to be full time, in order to be available for on-site support. Faculty and students may be guided through new teaching methodologies, small group dynamics, and discovering creative and individual

ways of adapting real life material for teaching purposes. 3. Course content: A broad structure or framework with clearly articulated objectives is essential, within which there is plenty of room for facilitators and students to be creative and improvise. The idea is to make the course enjoyable, through not only different content, but also different methods of delivery, the element of surprise and suspense, and, above all, participatory learning. The faculty and students explore and learn together in an atmosphere of democratic sharing. The element of enjoyment is important, especially in voluntary courses. Small groups and activity-based courses can ensure that students stay motivated. In India, where we are likely to have multiple languages in a classroom, and also differential abilities in English, nonverbal media such as music and painting can be explored for their power to evoke strong feelings without words.

Conclusion Sir William Osler, one of the greatest medical teachers of all time, said: “The whole art of medicine is in observation … to educate the eye to see, the ear to hear and the finger to feel…”(9) The kinaesthetic feel of that statement says it all. It is high time we learned to integrate the different dimensions of our personalities. Let us try to be whole, again, as we are meant to be. References 1. Wadia LC, Vishwanathan R, Mavani M. Reforms in medical education to promote accessible and affordable healthcare for all[Internet]. Mumbai: Observer Research Foundation. 2012 Feb. [cited 2012 Jun 18]. Available from: http://zeeba.orfmumbai.org/file/read/1911/reforms-in-medicaleducation-to-promote-affordable-and-accessible-healthcare-for-all 2. Centre for Community Dialogue and Change. Promoting theatre of the oppressed in education [Internet]. Bangalore: CCDC India; c2011-2012. Workshops; 2012 Jun [cited 2012 Jun 18]; [about 2 screens]. Available from: http://www.ccdc.in/theater-oppressed-workshops 3. Kirklin D. The Centre for Medical Humanities, Royal Free and University College Medical School, London, England. Acad Med. 2003 Oct;78 (10):1048-53. 4. Bonebakker V. Literature and medicine: humanities at the heart of health care: a hospital-based reading and discussion program developed by the Maine Humanities Council. Acad Med. 2003 Oct;78(10): 963-7. 5. Wellbery C. Do literature and the arts make us better doctors? Fam Med. 2000 Jun;32(6):376-8. 6. Lenahan P, Shapiro J. Facilitating the emotional education of medical students: using literature and film in training about intimate partner violence. Fam Med. 2005 Sep;37(8):543-5. 7. Zachariah A, Srivatsan R, Tharu Susie, editors. Towards a critical medical practice: reflections on the dilemmas of medical culture today. Hyderabad; Orient BlackSwan; 2010, p ix-x. 8. Shankar PR. A voluntary medical humanities module at the Manipal College of Medical Sciences, Pokhara, Nepal. Fam Med.2008 JulAug;40(7):468-70. 9. Osler W. The hospital as a college. In: Aequanimitas, with other addresses to medical students, nurses and practitioners of medicine. Philadelphia: P Blakiston;1906:327-42.

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Healthcare the Ayurvedic way Rama Jayasundar Department of NMR, All India Institute of Medical Sciences, Ansari Nagar, New Delhi 110 029 INDIA e-mail:[email protected]

Abstract Ayurveda, the indigenous medical system of India, has integrated the concept of interconnectedness into its understanding of health and disease. It considers the human body as an indivisible whole with a network of interrelated functions, mind and consciousness, wherein a disturbance in one part will have repercussions in other parts as well. The key to health is for these factors to maintain stability since disease is seen as a perturbation in this network. Ayurvedic treatment aims not only at removal of disease, but also at the restoration of the equilibrium of bodily functions. The centuries-old science of Ayurveda, apart from being a holistic form of medicine, also clearly defines the student-teacher and doctor-patient relationship. It sets high ethical standards of professional and personal integrity for the doctor, teacher and student. In addition to being technically skilled and well-read in the science, practitioners of Ayurveda must be compassionate and empathetic. Students of Ayurveda are taught the importance of compassionate caring for patients and maintaining personal integrity.

Introduction The societal impact of ill health is on the rise, with some diseases affecting not only the health of individuals but also that of a nation’s economy with their increasing healthcare costs (1). There is a growing consensus that the current system of healthcare should shift from its ‘technology, doctor and hospital-oriented’ approach to a more patient-oriented system (2-4). It is also being realised by a population weary of synthetic chemicals (5, 6) that conventional western medicine alone cannot handle the mushrooming of diseases, underscoring the need to widen the scope of healthcare to include alternative medical systems. All these inevitably bring into focus the patient-centric traditional healthcare medical systems like Ayurveda. The growing interest in Ayurveda is not only because it is free of synthetic chemicals, but also because of its integrated approach to health and disease (7).This article, while outlining the perspective of Ayurveda, also seeks to highlight how it approaches the patient as a complex and complete human being, addresses health and disease from a larger perspective, and empowers people to be responsible for their own health. The article also briefly outlines medical ethics as enshrined in Ayurveda.

Functional and systems perspective of Ayurveda In Ayurveda, the perception of the human body differs significantly from that of western medicine. The former looks beyond structural reductionism and considers health as a complex interrelationship between body and mind, reflected

at all levels. In Ayurveda, an organism is viewed as a system of relationships defining functions which are manifested through structures. Although a number of theories contribute to Ayurveda, the theory of dosha (vata, pitta and kapha – together constituting dosha) is an undercurrent felt throughout the Ayurvedic understanding of health, ill-health and treatment of disease. The words vata, pitta and kapha in Sanskrit, the language of Ayurveda, refer to functions like movement, transformation, support and growth, respectively, and a set of physico-chemical, physiological and psychological parameters contributing to these functions (8). A function is an emergent property of many contributing factors from structures and biochemicals, to physiological and psychological activities. A functional viewpoint will, therefore, be inclusive, taking into account all factors contributing to the function.

Health and disease in Ayurveda Ayurveda considers the human being as a combination of two basic elements: consciousness (chetana) and inert matter (jada). The relationship between these two entities makes a human being. The realms within, therefore, consist of not only the physical and physiological aspects, but also the mind and subtler levels of awareness/consciousness. Ayurveda connects these realms and adopts a comprehensive view of life and health. It says that the subtler levels within influence the physiology. Susruta defines a healthy individual as (9): samadosha: samãgnischasamadhãtumalakriya: prasannãtmaindriyamanã: svasthaitiabhidheeyate (ch.15/verse 41) In essence, “a healthy person is one whose dosha, dhãtu (structural entities) and metabolic end products are in equilibrium. Further, there must also be clarity in consciousness, senses and mind for a healthy state.” Health is that state in which the functions and parameters under the tridosha (vata, pitta and kapha), exist in fine balance; and disease occurs when there is an imbalance in these. Dosha, thus, represents a different perspective of the human body and provides a conceptual framework very different from that of western medicine. Ayurveda does not adopt a structural view like that of western medicine, but considers life as a complex and dynamic interaction of various functions and parameters, thus giving it a distinct approach in dealing with the human body in an integrated and holistic way. Everything from medicines and diet to mental, physical and emotional activities, and even seasons are classified and understood in terms of the changes they cause in the dosha, i.e. various functions and parameters in the body (10).

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Approach to treatment in Ayurveda

The doctor-patient relationship in Ayurveda

Ayurveda provides a number of synonyms for the word ‘cikitsa’, explaining in depth what it means – treatment, which aims at the removal of the disease-causing factors and the restoration of the equilibrium of bodily functions and tissues (doshas and dhatus) in a way which is compatible, conducive and nourishing to patients without weakening them (11). This is an important distinction from western medicine, where the benefits from treatment are quite often outnumbered by its side effects (12-15). Once the disease-causing dosha is identified, the entire treatment is planned to restore the deranged functions to balance using a variety of treatment modalities from medicines, medical procedures (panchakarma), and diet, to activities, mental and physical. For example, in osteoarthritis (vata disorder), the entire treatment will be directed towards reducing the increased vata (particularly the parameter ‘dryness’) i.e., use of ‘vata alleviating’ medicines, procedures (eg. medicated-oil application), diet and lifestyle activities. This shows how Ayurvedic multimodal treatment strategies restore the complex dosha / functional balance. Since interconnections between various functions (dosha) are known in Ayurveda, the treatment is able to avoid side effects by a judicious combination of medicines, diet and activities.

The doctor-patient relationship is an important part of medical care and more so in the current health scenario where an increasing number of health problems are considered psychosomatic in nature, or diet and lifestyle-related. In Ayurveda, the doctor is considered not only as a healer, but also a friend and philosopher, and is expected to preserve a high level of professional and personal integrity to be in a position to advise patients. The doctor is constantly reminded that this noble profession is for the welfare of the patient and not for making money. The relationship between the physician and the patient is considered a key factor for the well being and recovery of the patient (16, 16a). Clinical empathy is considered an essential interpersonal skill required for professional competency, success and the patient’s well being. The doctor, in addition to being knowledgeable and technically skilled, is expected to maintain good qualities such as being compassionate, empathetic, caring and kind to all patients (16b). They are asked to nurture cordial feelings towards their patients like a mother, father, or brother (16c). The quality of compassion is highly valued and applied not only to patients but to all sentient life. This is an essential requirement for an Ayurvedic physician and forms an important part of medical ethics. Interestingly, truth is not to be viewed in isolation in Ayurveda. If it is likely to harm the patient, then compassion has to overrule this virtue. Likewise, if a lie can do good to the patient, it is to be condoned (17).

Ayurveda also empowers a person by taking health into the realm of one’s personal responsibility. The following example highlights this point: this is the case of a 45 year old patient, who had heavy bouts of cough and cold every spring season for nearly six years, and was on antibiotics during the affected period. From an Ayurvedic point of view, this kapha-related problem was diagnosed as a seasonal disease, with the root cause being indulgence in diet and lifestyle incompatible with the spring season. During spring, kapha gets aggravated and hence all kapha-aggravating food, such as citrus fruits, fruit juices and yoghurt, as well as activities like sleeping during the day, should be avoided. The patient, however, had been indulging in all these. The problem was addressed simply by correcting the diet and activities. The patient has now faced three spring seasons without any recurrence, after this intervention in diet and lifestyle alone. Ayurveda, thus, offers several methods to stay healthy and prevent disease. This is in contrast to western medicine, where patients are completely dependent on doctors for treatment. In Ayurveda, people are taught to be responsible for their own health, rather than to consider themselves victims of disease factors beyond their control. Ayurveda, thus, is a complete healthcare system going beyond treating disease. Ayurvedic principles and methods of healthy living can easily be incorporated into people’s day to day lives, food habits and activities. This gives a whole new perspective on healthcare where one does not wait for people to contract a disease. The primary purpose of healthcare should be to keep people healthy and minimise the onset of disease.

Medical ethics in classical Ayurveda The Ayurvedic physician is entrusted with both the physical and mental well-being of the individual and the community, is considered the most important factor for successful treatment, and is expected to maintain a high level of personal and professional integrity when dealing with patients (16d). The code of ethics embodied in Ayurveda sets out the criteria for good physicians, teachers and medical students. Compassion, integrity, respect, honesty, courage and conscientiousness are considered the cornerstone of medical ethics. There is emphasis on the doctor’s need to transcend the needs of the physical body and connect to the self of the patient. In order to evolve to this state, the physician has to lead a life of integrity and renounce material wealth (16c). Ethics is taught not merely for its own sake but because it is considered essential on the path to the final goal in life. The same is conveyed to the patients as well.

Qualities of teachers, physicians and students The following are some of the requirements listed in the Ayurvedic texts for a physician, teacher and student (16-17): The teacher should ü be compassionate, noble by nature, honest, of a thoughtful

disposition, courageous, intelligent, endowed with power of judgement and possess sharp memory; ü have self control, excellent character and devotion to

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patients, thorough knowledge of the medical and other


allied sciences, good communication skills and be ready to share knowledge without reservation; ü be experienced, without malice or a wrathful disposition,

compassionate towards those who approach him for being taught, well-disposed towards students and eager to teach them; ü have experienced self realisation to teach the essentials of a

true human being to the students. The Ayurvedic texts repeatedly say ‘He who practices medicine while holding compassion for all creatures as the highest religion is one who has fulfilled his mission and obtains supreme happiness’; ‘Those who make a trade of medicine for the sake of making a living, bargain for a dust-heap, letting go a heap of gold’; ‘He who practices medicine out of compassion for all creatures rather than for gain or for gratification of the senses surpasses all’. The texts say that patients trust their physicians completely and hence a physician should take as much care of every patient as he would of his own family (1617). The student should ü be compassionate, intelligent, hard working, eager to learn

and improve, and have respect for teachers ü have self control, purity in conduct and thought, and be

honest. Students are trained in the skills of observation, reflection, analysis and understanding of the science, the self and others. Formal training is considered an essential requirement to be a physician. However, it is only with years of practice, observation and constant study that a physician can aspire to be worthy of the profession. Students are advised that as physicians, they should never share information about a patient with others (17a). It is pertinent to note that these values have not only current relevance but also universal applicability.

Conclusion As the world faces increasing chronic, psychosomatic stress and lifestyle-related disorders, medical scientists are beginning to realise the importance of an integrated approach to health and healthcare. Ayurveda, with its holistic perspective and integrated approach to health and disease, emphasis on diet and lifestyle activities, and time-tested clinical practices can play an important role in healthcare, especially in India. The experience and expertise accumulated in Ayurveda over

several millennia should be used to benefit suffering people. References 1. Avenell A, Broom J, Brown TJ, Poobalan A, Aucott L, Stearns SC, Smith WC, Jung RT, Campbell MK, Grant AM. . Systematic review of the long term effects and economic consequences of treatments for obesity and implications for health improvement. Health Technol Assess. 2004 May;8(21):iii-iv,1-182. 2. Kim SS, Kaplowitz S, Johnston MV. The effects of physician empathy on patient satisfaction and compliance. Eval Health Prof. 2004 Sep;27(3):23751. 3. Shanafelt TD, Bowen DA, Venkat C, Slager SL, Zent CS, Kay NE, Renalda M, Tun H, Sloan JA, Call TG. The physician-patient relationship and quality of life: lessons from chronic lymphocytic leukemia. Leuk Res. 2009 Feb;33(2):263-70. 4. Hojat M, Louis DZ, Markham FW, Wender R, Rabinowitz C, Gonnella JS. Physician’s empathy and clinical outcomes for diabetic patients. Acad Med. 2011 Mar;86(3):359-64. 5. Wade C, Chao M, Kronenberg F, Cushman L, Kalmuss D. Medical pluralism among American women: results of a national survey. J Womens Health (Larchmt).2008 Jun:17(5): 829-40. 6. Bishop FL, Lewith GT. Who uses CAM? A narrative review of demographic characteristics and health factors associated with CAM use. Evid Based Complement Alternat Med. 2010 Mar;7(1): 11-28. 7. Jayasundar R. Quantum logic in Ayurveda. In: Morandi A, editor. An integrated model of health and well-being. From Indian tradition to globalized knowledge. Springer-Verlag. Forthcoming. 8. Jayasundar R. Ayurveda: a distinctive approach to health and disease. Curr Sci. 2010;98:908-14. 9. Sharma PV, translator. Susruta Samhita (Vol 1). Varanasi: Chaukhamba Visvabharati, 2004. 10. Jayasundar R. Contrasting approaches to health and disease – Ayurveda and biomedicine. In: Sujata V, Abraham L, editors. Medicine, state and society – indigenous medicine and medical pluralism in contemporary India. Delhi: Orient Longman: 2012. 11. Sharma RK, Dash B, translators. CarakaSamhita (Vol 3), Chaukhamba Sanskrit Series Office, Varanasi (2001). Chapter 1, verses 1-3. 12. Lazarou J, Pomeranz B, Corey P. Incidence of adverse drug reactions in hospitalized patients. JAMA.1995 Apr 15;279(15):1200-5. 13. Moore TJ, Psaty BM, Furberg CD. Time to act on drug safety. JAMA. 1998 May 20; 279(19):1571-3. 14. Gandhi TK, Weingart SN, Borus J, Seger AC, Peterson J, Burdick E, Seger DL, Shu K, Federico F., Leape LL, Bates DW. Adverse drug events in ambulatory care. N Engl J Med 2003. Apr 17;348(16):1556-64. 15. Dean C. Death by modern medicine. New York: Ash Tree Publishing; 2005. 16. Sharma RK, Dash B, translators. CarakaSamhita (Vol 1). Varanasi: Chaukhamba Sanskrit Series Office; 2008. 16a. Chapter 9: verse 26. 16b. Chapter 1: verses 132, 133. 16c. Chapter 29: verses 6,7,13. 16d. Chapter 9: verses 6, 10-14, 21-23. 17. Sharma RK, Dash B, translators. CarakaSamhita (Vol 2). Varanasi: Chaukhamba Sanskrit Series Office; 2008. Chapter 8: verse 4. 17a. Chapter 8: verses 5, 8, 13-14.

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Articles

How ‘informed’ is informed consent? Findings from a study in South India Shuba Kumar1, Rani Mohanraj2, Anuradha Rose3, MJ Paul 4, George Thomas5 Samarth, New No. 100 (Old No. 11), Warren Road, Mylapore, Chennai 600 004 Tamil Nadu INDIA 3 Assistant Professor, Department of Community Medicine, Christian Medical College, Vellore, Tamil Nadu INDIA 4 Professor and Head, Department of Endocrine Surgery, Christian Medical College,Vellore, Tamil Nadu INDIA 5 Chief Orthopaedic Surgeon, St Isabel’s Hospital, 49, Oliver Road, Mylapore, Chennai 600004, Tamil Nadu INDIA. Author for correspondence: Shuba Kumar e-mail: [email protected] 1, 2

Abstract A qualitative study using in-depth interviews was carried out among patients and doctors working in a private hospital in Tamil Nadu, to understand perceptions of informed consent. Audiorecorded interviews were transcribed verbatim and a framework analytical approach was used in analysis. Emergent themes ranged from perceptions on informed consent, and discussing health concerns and decision making, to information provided by and expectations from doctors, and suggestions for improvement. Most patients were unfamiliar with the kind of information provided in the informed consent process; a few felt that the information was inadequate. Decision making about surgery was left mostly to the doctor. Poor literacy in patients was seen as a barrier to effective communication by doctors. Developing local language versions of consent forms supported by audiovisual aids is needed for patients to take a proactive role in their treatment process, and for doctors to be receptive to patients’ needs and capacities.

Introduction Informed consent has increasingly become a major topic of discussion and debate. While the need for client participation in healthcare decision making has been acknowledged, its implementation has been varied and individualistic. Haas (1) says that while some variations in this process are appropriate as circumstances can differ, others result both from confusion about these issues and passive resistance to new demands. Although the informed consent process is followed in most medical settings, evidence of patients’ experiences of the consent process remains limited. Studies from developing countries show that patients view written consent as ritualistic and bureaucratic. Some feel frightened or pressured to give consent (2,3). According to Moazam (4), the unquestioned authority of the medical profession and a fatalistic belief among the population about illness and death leave patients open to exploitation. She identifies a lack of awareness of individual rights and redress through the judicial system, which is not easily accessible. Consequently, the risk of exploitation of patients by healthcare professionals is real. Perez-Moreno (5) analyses the quality of information provided prior to anesthaesia and surgery in 300 patients and found that a majority of patients had poor knowledge of surgical and anaesthetic risks. Concerns

regarding erosion of patient autonomy and subordination of patients’ interests to the competing interests of the family also exist, particularly in paternalistic societies (6). The above scenario is similar in India. Typically, the oldest male member in the family makes major decisions. Where women patients are concerned, the complex patriarchal nature of the structure of Indian society in turn dictates the nature of this relationship between the doctor and the female patient, with women often expected to be acquiescent, allowing the senior family member to do the talking (7). Furthermore, patients generally tend to put the onus of care on the doctor. This attitude is typical of most Eastern religions which view the art of healing as ‘work most worthy of men’ (8). Focshen et al (7) report that doctors tend to view patients’ knowledge as ‘not worth taking into consideration’. They further state that as patients are seen as lacking in capacity to fully understand the information provided, trying to communicate to them is often seen as a futile exercise. Considering the above, researchers in India are beginning to recognise the limitations of standard informed consent forms. For non-literate and semi-literate persons, this document is viewed with suspicion and one to which they are reluctant to affix their signatures or thumb impressions. In other instances, the informed consent process has become a mere formality with subjects/patients simply acquiescing to whatever is required of them. Given the above, informed consent that hinges purely on the principle of autonomy and rational decision making as understood in the West is problematic. With this background, we carried out a qualitative study among patients and healthcare professionals working in a private hospital in the southern state of Tamil Nadu, India, to understand the process of informed consent as it operated there. Specifically, the study sought to ascertain how patients and healthcare professionals perceived informed consent and the constraints to obtaining informed consent, and what their suggestions were on improvements.

Methods A cross sectional study using in-depth interviews was carried out in the department of surgery of a large private tertiary level hospital in southern Tamil Nadu. Ethical clearance was obtained from the Institutional Review Board (IRB) of the hospital. Using purposive sampling, consenting Tamil speaking adult patients admitted to undergo surgery and doctors working

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in the department of surgery were included. Patients were approached following completion of their surgery. Only those who were physically fit enough to participate in the interview and gave written consent were included. All interviews were carried out in privacy and both patients and doctors were assured of confidentiality. Separate in-depth interview guides for patients and doctors were developed. Efforts were also made to explicitly solicit suggestions on improvement of the consent process. The guide for patients sought to elicit details on patients’ perceptions of the meaning of informed consent, information communicated to patients, and the comfort level of patients in asking questions to the doctor. The guide for doctors included issues such as how they understood informed consent, description of the informed consent process currently underway in the hospital, their satisfaction/dissatisfaction with it, perceptions on the nature and quantum of information to be provided to a patient, and constraints to obtaining informed consent in the hospital setting

Analysis All interviews were audio recorded, and transcribed verbatim. Those carried out in Tamil were first transcribed verbatim and then translated into English, to allow for analysis using a qualitative software. A framework analytical approach was used for data analysis (9). This process, involving a number of highly interconnected and iterative stages, began with data immersion. This was followed by a series of other stages involving identifying a thematic framework: sifting through the data, identifying meaningful and relevant quotes; placing the quotes under the appropriate thematic category; mapping; and finally interpretation. Each transcript was coded inductively by two independent researchers (SK and RM). After coding 3 interviews, the coders compared the coding schemes each had developed, resolved any differences in coding and developed a common coding framework that was used to code all other interview transcripts. Once all the interviews were coded, segments of text that were related to a common theme were pieced together and in this manner emergent themes were identified. The qualitative analysis was done using NVIVO.

Themes of analysis The themes that emerged were: ü Perceptions of informed consent ü Information provided by healthcare providers to patients ü Perceptions on discussing health concerns and decision

making ü Expectations from the healthcare facility/providers ü Suggestions for improving consent procedures

(see Table : Quotes from interviews)

Perceptions on informed consent For many patients,“informed consent” was an unfamiliar phrase. They did not know what it meant aside from having to sign a form, the contents of which were only vaguely known to them. One young woman patient said that she had never paid any attention to these issues and had left it entirely to her mother. To others, it implied a document by which the hospital could protect itself in the event of any mishap. Others understood that it entailed a process whereby doctors communicated details about the nature of surgery that was to be performed, and advised them of potential risks and benefits. Some educated patients believed that non-literate patients were at a disadvantage as they understood little and the onus was on doctors to help them understand. Doctors, for the most part, were familiar with the concept of informed consent. Issues concerning ethics and informed consent were taught to them as part of their medical curriculum. Although most were unable to clearly name the three broad principles of ethics (respect for persons, beneficence and justice), they were, able to provide fairly clear explanations of what informed consent entailed. One doctor spoke of the importance of giving patients the right to decide and making the effort to explain to patients in a manner that would help them understand. A few doctors held different positions and felt it was alright for doctors to take the lead and make the decisions considering their expertise and experience in the field.

Results Demographic characteristics

Information provided by healthcare providers to patients

A total of 14 patients (8 women, 6 men) aged 25 years and above were interviewed. All were from Tamil Nadu and hence all interviews were carried out in Tamil. Three men and one woman had completed graduation, 5 had completed 10-12 years of schooling (secondary school) and 4 had completed 5-6 years of schooling (primary school). All the patients were married barring two women who were unmarried. The surgical procedures that these patients underwent ranged from appendicitis, hydrocele, fibroids, and toe amputation to caesarean section and colostomy. A total of 8 doctors (2 women, 6 men) were interviewed, 2 of whom were heads of their departments aged 50 years or more, while the remaining 6 were junior and senior residents aged between 22 and 30 years.

In terms of content, most patients said that doctors had described the specific surgical procedure in fair detail. This happened over several sittings beginning with the first visit which was in the outpatient’s department. Many times, this explanation was done with the help of a sketch to demonstrate what the surgery entailed. According to the patients, doctors also told them about potential risks but generally softened this by saying that “everything would be alright”. In contrast, a few patients said that not much information had been given to them, and what little they had gleaned was by overhearing conversations between medical personnel. One woman who had recently undergone a caesarean section said that neither doctors nor nurses had prepared her for the possibility of caesarean section. Nor had they apprised her, during her

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Table : Quotes from interviews Perceptions on informed consent “I asked whether I should sign the form or my husband should sign the form and they told me that if I sign the form it is okay. But I don’t know for what reason they got the signature.” (Female, 43, primary school educated) “At the time of surgery if something happens, like if they do the surgery on the wrong side, we cannot question them. That is what I have read in the form.” (Male, 27, college educated) “Initially I never even thought of it (informed consent). As long as we are not harming people and are doing things to help society, it was not even important for me. But after I started getting involved in research, I began to learn more about it. I became convinced that it is an important aspect.” (Doctor, male, 50) “This (ethics) is something instilled in us when we study here.” (Doctor, male, 24)

Perceptions on discussing health concerns and decision making “It is like talking back to the doctor. The doctors come and examine discuss among themselves and decide. What is there for me to ask the doctor?” (Male, 62, college educated) “For everybody life is very important and people are scared to ask questions to the doctor for fear that the doctor will either not treat them or else not give them the correct treatment.” (Male, 25, college educated) “When we see a patient we always see them with a relative, so information goes to both the patient and the relative. Time is always taken to explain to them what is wrong with the patient and what needs to be done.” (Doctor, male, 27) “I think it is ok for doctors to decide, after all we are the ones who understand the pros and cons so it is obvious that we should be the ones making the choices. I don’t think it is fair to ask the patient to decide. It is like buying software. If you ask me to go and buy one, I really know nothing about it. Even if you told me that this software has these features etc I would still be clueless at the end of it and will depend on the computer expert to guide me. So I feel somewhat the same. We have been in this field of medicine for (years)and our understanding is also different (from that of a non-medical person). We cannot expect a non-medical person to have that same understanding.” (Doctor, male, 53)

Information provided by healthcare provider to patients “On many occasions when we try to explain things or tell them (patients) why we are doing a certain procedure, they say it

doesn’t matter and that they don’t really want to know. They say, ‘If you say it has to be done, then I will do it.’ ” (Doctor, male, 50) “I keep the patient informed, if they (relatives) don’t want me to tell the patient, then I will not tell them what the disease is, but I will tell (the patient) everything else. But I do tell the family members that within 48 hours they need to inform the patient and that if they do not do so I will. Before the operation we make sure that the patient knows the diagnosis and the likely outcome.” (Doctor, male, 55) “Some patients find it difficult to understand the concepts. For them we draw and show them; I simplify it so they can understand. We have a generic form which is applicable for all kinds of operations but issues like the risks, complications we have to write and fill in the form.” (Doctor, female, 22) “I feel in our country the burden on the doctor is much more than in other countries. Here quite often the doctor is forced to decide for the patient. Many patients do not have the knowledge and they will tell us, ‘You tell me what is the right thing to do.’ Most of the time they (patients) don’t even know what procedure they have undergone. They don’t know about complications, they don’t even know the diagnosis. Sometimes it can be extremely difficult.” (Doctor, female, 30)

Expectations from the healthcare facility/provider “The doctor did not give any instructions on what I need to do to take care of myself after a caesarean. They need to give me all this information at the outset.” (Female, 37, secondary school educated) “The doctor has to spend time with the patient. If the doctor comes just for a few minutes and walks away, you don’t feel like asking him any doubts freely because he will not be in a mood to listen to you and hear what you are saying.” (Female, 43, primary school educated)

Suggestions for improving consent procedures “I believe that the doctor knows what is the best thing to be done, but the patient should ask the doctor his doubts. He should ask for all information about his operation.” (Female, 36, primary school educated) “Social workers will need to be properly trained as this (medicine) is a highly specialised field and they should be able to communicate clearly to patients ... It may take a long time to train them but then they can be very helpful to us and may help to decrease the workload of doctors.” (Doctor, female, 30)

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antenatal consultations, of the aftereffects of having such a surgery. While underscoring the importance of doctors communicating clearly to patients, the need for patients to play a proactive role in the treatment process was also highlighted. However, patients reported varied reactions to the information provided by doctors regarding their illness and treatment, which ranged from appreciation to feeling overwhelmed and afraid. The doctors explained that in almost all cases patients were seen along with a family member and details concerning the illness/surgery were jointly explained to both. The consent form used in their facility was described as a two-part document comprising information and consent. The information section was usually written up in brief by the doctor. The consent section was usually a standard printed form, which the patient was asked to sign indicating acceptance to undergo the surgery. Consent was obtained on the day of the surgery. Sometimes, at the behest of relatives, doctors would refrain from giving details to the patients but they would insist that patients needed to be apprised of risks and complications at some point before surgery. This need to inform patients about potential risks and benefits irrespective of what relatives thought was underscored by all the doctors.

Perceptions on discussing health concerns and decision making Patients gave various reasons for not asking questions to their treating doctors. The most common reason hinged on their deep sense of faith and trust in the specific hospital or doctor and the conviction that the ‘doctor knows best’. Another concern was that of appearing poorly in the eyes of the doctor if they were to ask a lot of questions. The perception that raising questions would be seen as being rude, coupled with the fear of annoying the doctor who then may not deliver proper care, was often reported. Others believed that it was the duty of the doctor to provide all the necessary information to the patient without the patient even having to ask for it. Decision making about surgical procedures, too, was largely left to the doctor although patients did discuss it with their families. However, they depended on their doctors to guide them. The total dependence and faith that patients reposed in doctors, coupled with reluctance on the part of many patients to learn more about their health condition, often prompted doctors into communicating minimally to patients and making decisions for them. Some doctors spoke of the dynamics of the doctor-patient relationship that seemed to suggest that the doctor was on a higher plane when compared to the patient and thereby more empowered to make these decisions. A few doctors spoke of the limited ability of patients to understand issues concerning their illness as well as complications related to the surgery, which they perceived as a deterrent to the process of informed consent. Despite this, doctors believed that patients needed to be involved in and apprised of the facts of their surgical procedure. In a few instances, doctors spoke of language as a barrier to effective communication. All

doctors reiterated that the operating doctor by virtue of his/her primary responsibility to the patient went through the consent process, but obtaining the signature on the consent form was delegated to a junior doctor.

Patient expectations from the healthcare facility/ providers One of the most consistent expectations repeated by patients was that doctors needed to spend time and explain their illness/surgery in a manner that they would understand. The importance of describing what sort of post-operative care needed to be taken was also stressed. Others spoke of the value of using flip charts, sketches or other visual aids to help explain surgical procedures in a simple and effective manner but also felt that this needed to be used with caution as it could frighten patients. Most patients saw the doctor as the ideal person for obtaining consent; only two felt that anyone of the medical staff would be acceptable.

Doctors’ perceptions on improving informed consent processes Suggestions given by doctors ranged from developing language versions of consent forms and getting social workers to obtain consent to relieve the burden on doctors, to developing audiovisual aids - either in the form of flip charts or as material downloaded from the internet. Some said that the inability to read on the part of many patients tended to preclude the usefulness of language forms. Having social workers talk to patients and explain details about their illness and surgery was appreciated by most doctors but they underscored the importance of making sure these social workers were well trained, and professional in the manner in which they obtained consent.

Discussion Culture and informed consent The findings from this study revealed that an understanding of informed consent among the study participants could at best be termed moderate, but was for the most part inadequate. Implicit faith combined with a deep and abiding respect for doctors and the fear that asking questions to the doctor would be seen as rude behaviour acted as deterrents to patient participation. These cultural influences cut across different sections of society and being educated did not imply being proactive. Interestingly, this implicit faith in the medical profession (Fig.) is observed in most societies (4, 10,11). Doctors, for the most part, believed in communicating key issues to patients but often found poor literacy levels and language barriers prevented effective communication. Studies carried out in western countries have also shown that patients’ understanding of their health condition, prognosis, treatment and the risks involved were not complete owing to their cognitive and emotional limitations (11-13). Some doctors in our study believed that they should advise patients

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Fig.1: Informed consent: conceptual framework

Doctors: Intrinsic factors

Cultural influences ü Faith in doctor/medical facility ü Respectful of doctors, afraid to ask questions for fear of irritating doctor ü Fatalistic acceptance ü Don’t want to know

ü

Perceptions on importance of IC ü Difficulties in explaining to patients ü ‘I am the doctor I know what is best’ attitude ü Do not want to unnecessarily frighten patients

Patients: Intrinsic factors

Doctors: hospital policy

Understanding of illness /disease Seeking information from doctor Understanding of risks, benefits and rights Decision making

Diagnosis of disease ü Communication to patient /family ü Explanation of risks and benefits ü Aids in decision making ü

Consent obtaining process- signing the informed consent form

Consent giving process

Informed consent

on what choices to make because of their expertise and experience. While it is true that the consent process is all about providing adequate information to patients so that they can make these choices, those with poor literacy often tend to feel overwhelmed and unable to make these decisions and preferred leaving it to the doctor. A study carried out by Fink et al (14) demonstrated that patients who were elderly, belonged to the African-American or Hispanic races, with less than high school education, experienced difficulty in comprehending the details of their surgical procedure. However, the use of adjuncts like ‘repeat back’ (patients are asked to state in their own words whatever they have understood from what was read out to them through the consent form) improved patient comprehension significantly. Krankl et al (15) too concluded that greater attention needed to be given to patients’ educational background to ensure adequate understanding of clinical information. In this context, Bernat and Peterson (16) have reported on the value of doctors developing a good understanding of exactly what and how to communicate to help patients understand better. These proactive steps

by doctors combined with building awareness about these processes among patients could aid in making informed consent ‘truly’ a two-way process rather than the one-sided one that it currently is. The informed consent form The perception that the consent form was a defensive tool used to protect doctors/hospitals was reported by patients and their families. This was reported by Akkad et al (17) in a study from England. Further, there was considerable uncertainty among patients about the implications of signing/ not signing the consent form. In our study too, the fact that only a few patients spoke of the consent form as a document that was in their interest was disquieting, as it implied poor understanding about the true purpose of the consent process. The clear guidelines about the depth and detail required in the consent form in research are not reflected in the clinical field. Information about the surgery was written down, sometimes briefly, sometimes combined with sketches by the doctor, allowing a considerable amount of variability in terms of

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what was actually described. The consent form that was used consisted of a printed form outlining that the patient was aware of the potential risks and had consented to surgery. The meaningfulness of the written consent form has been debated widely. Studies have shown that many patients do not read the consent form, primarily because of their preference for verbal information (3, 18). Many also find it hard to understand. Most patients in India do not read the form because of poor literacy. But more typically, it could be attributable to the belief that the ‘doctor knows best and will not deliberately harm me.’ However, the use of visual aids like drawings and sketches during consultations prior to surgery were found by patients to be helpful. Research has shown that the use of decision aids and supplementary educational material during the informed consent processes improves patients’ comprehension and is associated with patients’ increased knowledge about their condition, low decisional conflicts and reduced use of elective procedures (19, 20-22). Perhaps, the use of more structured visual aids (flip charts, videos) could help patients understand better, and instil the purpose and value behind getting involved in their recovery process. This could be the way to go forward in the future. Who should obtain consent? The question of who should obtain consent received a near unanimous response. Most patients believed that their doctor was the right person to take them through the consent process and most doctors agreed with this view. Although it is true that the consent process usually happens over several sessions, the fact remains that most doctors work in very busy clinics and quite often are not able to spend time with patients. For patients, the need to emotionally connect with doctors, gain their reassurance and have the doctor ‘come down to their level’ and explain the pros and cons in a less hurried atmosphere is critical. Sanyal et al (23) reported that Indian patients are able to comprehend and should be informed about the details of their operation but highlighted that the informed consent process should be a continuous one rather than a single event. Physicians at the Temple University in the US identified several challenges in direct relation to informed consent based on a review of patient-doctor communications (24). Many of these, like lack of clinician time, poor patient literacy, and language and cultural issues, were cited by both the patients and physicians in our study, which in turn suggests the need for the development of consent guidelines that are more in keeping with what patients want. A limitation of our study was that we did not include a government hospital or even another private hospital as a comparison. The selected hospital by virtue of its strong service-oriented philosophy cannot be considered reflective of the situation that prevails in other hospitals. However, the strength of the study lies in the use of qualitative methods, which allowed patients and doctors to speak freely, thereby lending credibility to the findings.

Conclusion The doctor-patient interaction has been widely acknowledged as an important factor influencing patient health outcomes (25). Given this, it is imperative that the one-sided doctordominated relationship gives way to a more patient-centric approach (26). The study findings highlight the need for patients to take a proactive role in their treatment process, and for doctors to be receptive to patient needs and capacities, and provide information that can be easily understood. Such a participatory relationship where treatment decisions are made in an environment where patients feel free to air their concerns, and where doctors understand and respect these concerns, would be the most appropriate strategy towards obtaining ‘truly’ informed consent. This, combined with the use of more structured visual aids could help patients better understand the medical/surgical procedures they are about to undergo. Perhaps, this would help set the stage for the development of consent guidelines and strategies that are culturally appropriate and reflect patient needs. As rightly argued by Doyal (27), despite the potential limitations that patients may have in understanding clinical information, the onus is on healthcare providers to improve their methods of communication, even to the extent of taking recourse to better educational aids as a means of facilitating the informed consent process and ensuring better understanding by patients. References 1. Haas LJ. Hide-and-seek or show-and-tell? Emerging issues of informed consent. Ethics Behav. 1991;1(3):175-89. 2. Habiba M, Jackson C, Akkad A, Kenyon S, Dixon-Woods M. Women’s’ accounts of consent to surgery: qualitative study. Qual Saf Health Care. 2004;13:422-7. 3. Akkad A, Jackson C, Dixon-Woods M, Kenyon S, Taub N, Habiba M. Informed consent for elective and emergency surgery in obstetrics and gynecology: a questionnaire study. BJOG. 2004;111:1133-8. 4. Moazam F. Families, patients, and physicians in medical decision making: A Pakistani perspective. Hastings Cent Rep. 2000;30:28-37. 5. Perez-Moreno JA, Perez-Carceles MD, Osuna E, Luna A. Preoperative information and informed consent in surgically treated patients. Rev Esp Anestesiol Reanim. 1998;45:130-5. 6. Blustein J. The family in medical decision making. Hastings Cent Rep.1993;23:6-13. 7. Fochsen G, Deshpande K, Thorson A. Power imbalance and consumerism in the doctor-patient relationship: Health care providers’ experiences of patient encounters in a rural district in India. Qual Health Res.2006;16:1236. 8. Scully C, Wilson N. Culturally sensitive oral health care. London: Quintessence Publishing Company Ltd;2006. 183p. 9. Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, Burgess RG, editors. Analysing qualitative data. London: Routledge;1994. p 173-94. 10. Fetters M. The family in medical decision making: Japanese perspectives. J Clin Ethics.1998;9:132-46. 11. Rogers AE, Addington-Hall JM, Abery AJ, McCoy AS, Bulpitt C, Coats AJ, Gibbs JS. Knowledge and communication difficulties for patients with chronic heart failure: qualitative study. BMJ. 2000;321:605-7. 12. Sutherlund H, Lockwood G, Till J. Are we getting informed consent from patients with cancer? J R Soc Med. 1990;83:439-43. 13. Lloyd A. The extent of patients’ understanding of the risk of treatments. Qual Healthc. 2001;10(Suppl I):i14–13. 14. Fink AS, Prochazka AV, Henderson WG, Bartenfeld D, Nyirenda C, Webb A, Berger DH, Itani K, Whitehill T, Edwards J, Wilson M, Karsonovich C, Parmelee P. Predictors of comprehension during surgical informed consent. J Am Coll Surg. 2010 Jun;210(6):919-26.

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15. Krankl JT, Shaykevich S, Lipsitz S, Lehmann LS. Patient predictors of colposcopy comprehension of consent among English- and Spanishspeaking women. Women’s Health Issues. 2011 Jan-Feb;21(1):80-5. Epub 2010 Sep 15. 16. Bernat JL, Lynn PM. Patient centered informed consent in surgical practice. Arch. Surgery. 2006;141:86-92. 17. Akkad A, Jackson C, Sara K, Dixon-Woods M, Taub N, Habiba M. Patients’ perception of written consent: questionnaire study. BMJ. 2006 Sep 9;333(7567):528. doi:10.1136/bmj.38922.516204.55 18. Agard A, Hermeren G, Herlitz J. Patient’s experience of intervention trials on the treatment of myocardial infarction: Is it time to adjust the informed consent procedure to the patient’s capacity? Heart. 2001;86:632-7. 19. Schenker Y, Fernandez A, Sudore R, Schillinger D. Interventions to improve patient comprehension in informed consent for medical and surgical procedures: a systematic review. Med Decis Making. 2011 JanFeb;31(1):151-73. Epub 2010 Mar 31. 20. Volk RJ, Hawley ST, Kneuper S, Holden EW, Stroud LA, Cooper CP, Berkowitz JM, Scholl LE, Saraykar SS, Pavlik VN. Trials of decision aids for prostate cancer screening: a systematic review. Am J Prev Med. 2007

Nov;33(5):428-34. 21. Whelan T, Levine M, Willan A, Gafni A, Sanders K, Mirsky D, Chambers S, O’Brien MA, Reid S, Dubois S. Effect of a decision aid on knowledge and treatment decision making for breast cancer surgery: a randomized trial. JAMA. 2004;292:435-41. 22. O’Connor AM, Bennett CL, Stacey D, Barry M, Col NF, Eden KB, Entwistle VA, Fiset V, Holmes-Rovner M, Khangura S, Llewellyn-Thomas H, Rovner D. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev.2009:CD001431. 23. Sanwal AK, Kumar S, Sahni P, Nundy S. Informed consent in Indian patients. J R Soc Med. 1996 Apr;89:196-8. 24. Bury M. Researching patient-professional interactions. J Health Serv Res Policy. 2004;9:48-54. 25. Kaba R, Sooriakumaran P. The evolution of the doctor-patient relationship. Int J Surg. 2007;5:57-65. 26. Travaline JM, Ruchinskas R, D’Alonzo GE. Patient-physician communication: why and how. J Am Osteopath Assoc. 2005 Jan;105(1):13-8. 27. Doyal L. Informed consent: moral necessity or illusion? Qual Healthc. 2001;10(Suppl I):i29–i3.

Informed consent among nursing students participating in biomedical research Anupama Nambiar1, D J Christopher2 , Joy Mammen3, Thambu David4, Gagandeep Kang5, Shirley David6 Centre for Stem Cell Research, 2Departments of Pulmonary Medicine, 3Transfusion Medicine and Immunohaematology, 4Medicine, 5Gastrointestinal Sciences and College of Nursing, Christian Medical College, Vellore, Tamil Nadu 632 002 INDIA Corresponding author: Anupama Nambiar e-mail: [email protected].

1 6

Abstract For consent in biomedical research, it is essential that research participants understand the need for research, the study protocol, the risk and benefits of participation, the freedom to participate or decline and the right to leave the study at any time. A structured questionnaire was used to assess understanding and knowledge among nursing trainees participating in a cohort study investigating exposure and latent tuberculosis at a tertiary care hospital. Data were collected for 138 participants. While 97% were aware of their enrolment into a research protocol, only 78% could state that it was a study on tuberculosis. Approximately two-thirds were aware of plans for blood collection, but not all of them knew the timings or number of samples. The majority (59%) participants had consulted others before making the decision to participate, and only 73% felt that their participation was completely voluntary. Even among healthcare trainees, emphasis needs to be placed on testing both the knowledge and understanding of participants to ensure the principle and practice of truly informed consent.

Introduction Informed consent is an integral part of ensuring respect for participants in research. It is essential that research participants understand the reasons why the research is being conducted, the study protocol, the risks and benefits of participation and

that they are free to participate in or leave the study at any time (1). The process of administering informed consent usually requires an initial written communication, which then leads to a dialogue between the patient and the research worker and gives an opportunity for the potential research participant to ask questions and get a better understanding of the treatment or procedure. It is necessary not only that good communication takes place but also that the communication is documented. A well-designed, signed informed consent form provides documentation that the principle and process of ensuring that the decision to participate has been considered and voluntary. However, even if a research participant signs a consent form, it does not necessarily mean that the individual has understood all the key aspects of the study and therefore given full, informed consent (2). Therefore in many settings, particularly clinical trials, quizzes have been developed to assess whether or not the potential participant has understood key aspects of the research protocol (3). In general, participants taken from a healthcare environment might be expected to have a better understanding of the need for research and for the processes followed to obtain data for answering important study questions. Although there are no direct data that healthcare workers or students understand the need for research, there are data that show that students

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in healthcare-related fields are better informed about chronic health conditions, including HIV, than other students (4). At the Christian Medical College (CMC), Vellore, a large tertiary care institution, we had previously carried out two studies on informed consent in community-based participants enrolled in observational and interventional research protocols and found that in both studies, the provision of free or concessional healthcare was perceived as being a major motivator for participation in research, whether or not such care was promised during the discussion of the study and the informed consent process (5, 6). Since healthcare is provided free for students and staff at the institution, in order to assess our processes and the perception and recall of informed consent in a non-community based study, we designed a study carried out among nursing trainees enrolled in a study on tuberculosis (TB) incidence and prevalence (6). Among healthcare workers in developing countries, nurses spend a proportionately greater amount of time in direct contact with TB patients, and are at high risk for acquisition of TB infection and disease. The study on TB was designed to understand the epidemiology of nosocomial TB among nurses and recruited a cohort of young nursing trainees at CMC to determine exposure and disease during follow-up, and these data have been published (7, 8). In order to assess understanding of the nature of informed consent and recall of the study procedures, a study was designed to assess i) knowledge of the rationale for research, ii) procedures included in the study protocol, iii) understanding of the voluntary nature of consent and iv) understanding of the risks and benefits of participation.

obtaining all relevant administrative permission in August 2009. The study included student nurses from all six programmes offered at the College of Nursing, CMC, Vellore including: nursing diploma, BSc, post diploma BSc courses, fellowship courses, MSc, and doctoral (PhD) programmes. Students with a past history of TB were excluded from the study at recruitment. Most students in the nursing programmes at CMC come from lower middle class or middle class backgrounds, and from all over India, though mainly from the southern part of the country. Approximately 300 students attended an introductory meeting, where the investigator explained the purpose of the study, answered queries and distributed information sheets requesting participation. The process for data collection, the consent process, and confidentiality issues were explained. Of those attending the meeting, 180 students took the questionnaire and 138 completed forms were received.

Data collection and analysis A questionnaire-based tool was designed for data collection. The tool had questions that were intended to elicit information about i) knowledge of the disease being studied (tuberculosis); ii) knowledge of the rationale for the study; iii) awareness of study procedures; iv) perception of risks and benefits of participation; v) the process of obtaining and giving informed consent for the study; and vi) understanding of the voluntary nature of informed consent. The data from the completed questionnaires were entered into an Excel database and the summary statistics generated were presented using the functions in the same software. The binomial probability test was used to compare whether an observed proportion significantly varied from an expected probability with the expected probability set at 50%.

Results Methods A cohort study designed by the Department of Pulmonary Medicine, to study the incidence and prevalence of latent TB infection in nursing trainees was carried out with institutional review board and administrative approval at the Christian Medical College, Vellore in 2008-2009. To initiate the study, the principal investigator (PI) addressed the entire student body to explain the concept, followed by separate sessions with each class. Once again the PI or sub-investigator explained the basis of the study and the methodology with the help of a multimedia slide presentation. Their participation was requested and their right to choose or decline participation and to withdraw from the trial without citing any reason for their decision was explained to them. The study described here was a follow-on study regarding comprehension of informed consent conducted as described below.

Participants The total number of participants enrolled in the TB study in 2008 was 436, of which 350 students were present on the rolls when this study on informed consent approved by the Institutional Review Board in November 2008, was initiated after

As reported in the publication of the original study to assess TB exposure, participants were mainly female and over 80% were 18-22 years of age (7). The participants of this study on informed consent were constituted by all available participants in August 2009. A total of 138 student nurses participated in this study on informed consent. The data were analysed initially to assess awareness regarding participation and the protocol (Table). Although two-thirds of participants were aware that blood collection formed part of the study protocol, less than 10% knew the need for additional testing if the initial tests were negative. Although CMC offers free healthcare to all students and trainees, 47 (34.0 %) students believed that participation would offer access to better treatment from CMC if they were diagnosed, while 91 (66.0%) felt that there would be no change in the quality of their care. One hundred and three (74.6%) participants were of the opinion that the study would benefit others in the future, although 33 (23.9%) stated that they did not expect any direct personal benefit from participation and two participants did not respond. 86 (62.3%), perceived no risk from participation, although 50 (36.2%) responded that they were not sure.

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Knowledge of study enrolment and procedures Aware Number Awareness of enrolment in a research study Knowledge of study rationale

Knowledge of disease studied ( tuberculosis)

135

101

108

Knowledge of study procedures (blood collection)

88

Awareness of risks of participation

86

Awareness of benefits of participation

104

Awareness of freedom to withdraw

77

Percent (95% CI) 97.8 (93.8 - 99.5) 73.2 (65 - 80.4) 78.3 (70.4 - 84.8) 63.8 (55.2 - 71.8) 62.3 (53.7 - 70.4) 75.4 (67.3 - 82.3) 55.8 (47.1 - 64.2)

P value*