Palliative Care

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T H E J O U R N A L O F T H E E U R O P E A N A S S O C I AT I O N F O R PA L L I AT I V E C A R E

European Journal of

Palliative Care January/February 2014, volume 21 Number 1

www.ejpc.eu.com

COMMENT

5 Innovation is key to improve end-of-life care worldwide Julia Riley

CarE MaNagEMENT

6 Dementia at the end of life: what can hospices do? Ann Regan, Michael Tapley and David Jolley

CliNiCal MaNagEMENT

11 Antibiotic prescribing for urinary tract infection in hospices in Scotland Barbara C Wimmer, Linda Johnstone, Carolyne Mackay, Elayne Harris and Alexander B Mullen

rOlE MOdEls

22 Sheila Payne, President of the EAPC lEgal issuEs

24 Death certification: changes in England in Wales Paul Perkins, Kathryn Griffin, Lynne Tarling, San Sumathipala and Bob Bell

CulTural issuEs

27 Community initiatives foster health-promoting palliative care in Singapore Melissa MH Chan, Libby Sallnow and Scott A Murray

sErviCE iMPrOvEMENT

30 More palliative care involvement is needed for transplant patients Humaira Jamal, Anna Reed, Karen Collis, Lauren Berry and Jane Everitt

TraiNiNg

34 Collaborative, developmental and transdisciplinary practitioner supervision Julia Arnold

PErsPECTivE

38 Twenty-five years revisited: have we been faithful to our values and principles? René Schaerer

TEChNOlOgy

42 infoPAL – electronic records for palliative care patients in the Madrid region María Teresa Garciá-Baquero Merino, Belén Martínez Cruz, Fernando Pinedo Cañas, Manuela Monleón-Just and Diego Ruiz López

rEsEarCh

45 Palliative care research in western Africa Ikeoluwapo Ajayi, Oluwatomi Iken, Richard A Powell, Olaitan Soyannwo, Eve Namisango and Faith Mwangi-Powell

EurOPEaN iNsighT

48 In the UK, Marie Curie Cancer Care puts patients and families first Rhiannon Smith and Bill Noble

The case study masterclass

Book review

Case 72 Difficulty predicting prognosis in heart failure Jemma Storrar

➜ Palliative Aspects of Emergency Care

Case 71 answers. Complicated home discharge of an obdurate smoker needing oxygen therapy Morwenna Hitchens

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EJPC on the internet

Allie Klein page 33

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8

th World Research

Congress of the European Association for Palliative Care

Welcome to Lleida Palliative care researchers from all over the world meet in Lleida, Spain, 5-7 June 2014 to showcase and discuss cutting edge research within the field. Will you join us? Online registration for the congress is now open. Early bird registration deadline: 1 March 2014. www.eapcnet.eu/research2014

T H E J O U R N A L O F T H E E U R O P E A N A S S O C I AT I O N F O R PA L L I AT I V E C A R E

European Journal of

Palliative Care www.ejpc.eu.com Editor Dr Julia Riley, London, UK Deputy Editors Dr Carol Davis, Southampton, UK Professor Philip Larkin, Dublin, Ireland Editorial Advisory Board Dr Carlos Centeno, Pamplona, Spain Dr Massimo Costantini, Reggio Emilia, Italy Dr Joanne Droney, London, UK Dr Marilène Filbet, Lyon, France Professor Bridget Johnston, Nottingham, UK Dr Saskia Jünger, Bonn, Germany Professor Stein Kaasa, Trondheim, Norway Dr Daniela Mosoiu, Brasov, Romania Professor Lukas Radbruch, Bonn, Germany Dr Keri Thomas, Walsall, UK Corresponding Members of Editorial Advisory Board Professor Eduardo Bruera, Houston, USA Professor Cynthia Goh, Singapore, Republic of Singapore Professor Rod MacLeod, Sydney, Australia Dr Faith Mwangi-Powell, Nairobi, Kenya Professor Russell K Portenoy, New York, USA Dr Luzito J de Souza, Mumbai, India Dr Roberto Wenk, Buenos Aires, Argentina Dr Mohammad Zafir Al-Shahri, Riyadh, Saudi Arabia Book Reviews Editor Dr Vinnie Nambisan, London, UK

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Publisher Mary Read. Editorial Director Robin Jones. Senior Sub Editor Anne-Claire Bouzanne. Editorial Assistant Josie Mitchell. Art Editor Richard Seymour. Publications Manager Andrea Bucceri. The data, opinions and statements appearing in the articles herein are those of the contributor(s) concerned; they are not necessarily endorsed by the Publisher, Editors or Editorial Board. Accordingly, the Publisher, Editors and Editorial Board and their respective employees, officers and agents accept no liability for the consequences of any such inaccurate or misleading data, opinion or statement. The European Journal of Palliative Care is abstracted/indexed in the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Scopus. Articles from the European Journal of Palliative Care are also indexed in Scirus. Design & Editorial Office Hayward Medical Communications, 8–10 Dryden Street, Covent Garden, London WC2E 9NA. Tel: +44 (0)20 7240 4493. Fax: +44 (0)20 7240 4479. email: [email protected] The titles, the European Journal of Palliative Care and le Journal Européen de Soins Palliatifs, are the property of Hayward Group Ltd and, together with the content, are bound by copyright. Copyright © 2014 Hayward Group Ltd. All rights reserved. ISSN 1352-2779 (Print). ISSN 1479-0793 (Online). Printed by Williams Press Ltd. Cover picture: Portrait of Leonty Ronin Holding a Bible, G E Novikova, 1990, Russia © Anatoly Sapronenkov/SuperStock

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The European Journal of Palliative Care is the official journal of the European Association for Palliative Care, Onlus (EAPC). The EAPC was established to promote palliative care in Europe and to act as a focus for all those who work, or have an interest, in the field of palliative care. It is the goal of the EAPC to gather and represent all healthcare professionals and volunteers working in palliative care across Europe and to include as many members as possible in the daily life of the association. The EAPC was created by 42 founding members from nine European countries in 1988. It has grown rapidly since its foundation. In 2014, the EAPC has individual members from 47 countries across the world and collective members from 55 national associations in 32 European countries, representing a movement of many thousands of health- and social care workers and volunteers contributing to palliative care. If you would like to know more and/or become a member of the EAPC, please visit www.eapcnet.eu EUROPEAN JOURNAL OF PALLIATIVE CARE, 2014; 21(1)

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Comment

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Innovation is key to improve end-of-life care worldwide I was privileged to have been invited to the difficulties of recruiting palliative care patients to the inaugural World Innovation to participate in randomised controlled trials, big Summit for Health (WISH), which took place in data seems the obvious way forward to collecting Doha in Qatar on 10 and 11 December 2013.1 evidence through macro-observational studies and The purpose of the conference was to facilitate analysing clinical data collected on a population the building of long-term partnerships in order basis. For this type of research, the sky is the limit. to deliver the very best of healthcare Palliative and end-of-life care are innovations to people around the world. under-resourced and underdeveloped across Sixty-seven countries were represented. the world. As a result, there is a lack of knowledge There were forums on ‘mental health’, ‘patient about how people die. To improve the quality engagement’, ‘end of life’, ‘road traffic injury’, of dying, high-quality data on outcome measures ‘obesity’, ‘healthcare and ethics: end of life’, are required. The use of these data will improve ‘antimicrobial resistance’, our knowledge and drive ‘accountable care’ and innovation in evidence-based ‘big data and healthcare’. directions. To improve the quality It was marvellous to see that In its report, the WISH forum of dying, high-quality end-of-life care was given on end-of-life care (‘Dying data on outcome such a high priority. Healed: Transforming End-ofTwo of the keynote speakers measures are required Life Care Through Innovation’)3 were Simon Stevens – soon to made five recommendations, be the new Chief Executive of which are to: NHS England2 – and Daw Aung San Suu Kyi. ● Make care of the dying a priority to all The pair delivered virtuoso performances. ● Reduce unnecessary suffering In order to meet healthcare needs, Simon ● Improve knowledge and use of data to drive Stevens implored us to embrace innovation and innovation changes – changes that will enable us to deliver ● Maximise resources care in a more efficient, less costly manner. He ● Improve skills. pointed out that swift and radical changes are During the forum, a lively discussion took place, required, especially with an aging population, and at the end of which Sir Thomas Hughes-Hallett, that we need to rectify the imbalance between an Chairman of the forum, gave an undertaking that undersupply of needed care and an oversupply of the Global Health End of Life Care Group would inappropriate care. He encouraged innovation to commit to global innovation, and that the two come not only from the state health sectors, but main areas of innovation would be to: work with also from non-governmental organisations and policy-makers to draw up end-of-life care charities, which have more flexibility. He cited strategies; and facilitate the delivery of morphine Cicely Saunders, the pioneer of the palliative care to patients in all countries globally. If these movement, who started innovating almost 50 years two innovations become a reality, they will ago at St Christopher’s Hospice in London. surely be the greatest legacy that the WISH Daw Aung San Suu Kyi emphasised that it is conference could have made to mankind. pivotal that all innovations are underpinned by good values and spiritual care. Julia Riley, Editor, European Journal The forum on big data and health raised the of Palliative Care, London, UK profile of personalised, anticipatory and financially References 1. www.wish-qatar.org/home (last accessed 18/12/2013) aligned care that includes systems and outcomes. 2. www.england.nhs.uk/2013/10/24/simon-stevens-appoint/ (last accessed With good current data, large observational studies 18/12/2013) 3. http://wish-qatar.org/app/media/386 (last accessed 18/12/2013) can be done. Studies such as the one that identified A summary of the report Dying Healed: Transforming End-of-Life Care the link between smoking and cancer could be Through Innovation will be published in a future issue of the European replicated many times in different domains. Given Journal of Palliative Care.





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Care m a n a g e m e n t

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Dementia at the end of life: what can hospices do? Based on their experience of a new service offered by Willow Wood Hospice in Lancashire, UK, ann regan, Michael Tapley and david Jolley highlight the potential of hospices in helping people with dementia and their carers as the end of life approaches ospices need to change, as the demand for good end-of-life care rises and the nature of that care becomes more complex. As the population ages, death is more likely to occur as a result of chronic illness, with a greater number living and dying with cancer or dementia.1 Palliative care, once the preserve of oncology, now needs to extend to other incurable conditions.2 With its emphasis on care and communication, rather than medical intervention and treatment, it is highly appropriate for people with dementia, some of whom may become unable to verbalise their feelings. A holistic approach to the assessment of their distress is required and demands special skills and insight.3–5

H

The Willow Wood Hospice dementia service Willow Wood Hospice in Lancashire has recognised the commonly unmet needs of people dying with dementia. Following on

Key points ● The needs of people dying with dementia are commonly unmet. Willow Wood Hospice in Lancashire has set up a dementia service, run by a specialist nurse, to start addressing those needs. ● Issues that commonly affect people with advanced dementia and their carers are: lack of support from health services; concerns regarding reduced food and fluid intake; undetected or untreated pain; and unnecessary and distressing hospital admissions. ● Professional and family carers need help to recognise when the end of life is approaching. Once this step has been taken, goals of care can be changed, a palliative care philosophy can be adopted and, crucially, advance care planning can be discussed. ● A specialist dementia team working from a hospice base is well positioned to help improve the lives of people with dementia and those caring for them as the end of life approaches.

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from the positively evaluated The King’s Fund ‘Partners for Health’ project for people with advanced dementia,6 and aware of what some hospices in the USA have been doing for many years,7 Willow Wood Hospice now employs a specialist nurse in dementia supported by other hospice staff, including a psychiatrist, to start addressing those needs. Interventions can be as simple as giving treatment to relieve pain or nausea or providing equipment to make patients comfortable when sitting or lying down. Such small changes can make a big difference to people’s quality of life. They can help people with dementia who have been written off by professionals as being beyond help. In July 2012, we started familiarising ourselves with the services in our locality likely to care for people with advanced dementia and developing links with the people running those services. By the end of July, referrals had begun to flow in from a variety of sources: GPs, palliative care professionals in the community and the acute hospital, care home staff struggling with the progression of dementia in their residents, mental heath services worried about physical symptoms in their patients. At initial assessment and after intervention, we gathered baseline information including measures of pain, psychological distress, behavioural dependency, nutritional risk and risk of pressure ulcers.8 This enabled a standardised description of those referred as well as an evaluation of the effectiveness of interventions. It is recognised that quantitative methods may not be the best way of determining the benefits of the palliative approach, which touches aspects of being that are difficult to measure,9 so narrative information was also recorded, making powerful qualitative data available about people’s journeys. EUROPEAN JOURNAL OF PALLIATIVE CARE, 2014; 21(1)

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Care management

Identified issues

Lack of support from health services We found that there were people with advanced dementia being cared for at home by family carers with the help of social care agencies, or within a care home, with or without the support of district nurses (mainly depending on the presence of pressure ulcers). These people had been deemed to no longer need mental health services, which had discharged them once physical deterioration and immobility prevented the expression of distress in the form of challenging behaviour. Family carers were found to be left with little support or advice about the likely progress of dementia or whether the care they were giving was adequate. Some carers referred themselves, in effect, following publicity about our service and an event held locally for professionals and those affected by dementia.

HUNTSTOCK/GETTy IMAGES

During the first eight months of our dementia service, 49 patients were referred to us. We identified four main issues that affected their lives and the lives of those who support them.

the possibility of a nursing home placement. His daughter said: ‘How can he die from dementia? That just affects his mind. His heart is still strong’. Andrew was only in his 60s, but he had had dementia for over five years. Mental health services were no longer involved. The only healthcare professionals in regular contact with Andrew and his family were the district nurses who dressed his pressure ulcers weekly. He died after a month of treatment for dehydration on a medical ward.

■ For old people with

advanced dementia as well as for their informal carers, a stay in hospital can be a traumatic experience

Reduced food and fluid intake A big issue for professional and informal carers alike is the anxiety created when the person they care for refuses to eat/drink and their weight starts to decline.10 Information about Undetected or untreated pain the efficacy, risks and burdens of approaches It is known that, in care homes and hospitals, such as artificial hydration and nutrition11–13 people with dementia suffer from untreated can bring some relief to carers pain, which indicates a need Our view is that the best for improved assessment.9,14,15 who want to ensure that all that can be done is being approach is to anticipate Pain assessment tools have done. Supplementing dietary and assume pain based been developed for use in intake with high-calorie dementia, but their reliability on the patient’s history options may then be seen as a in detecting pain and more humane way to proceed than the indicating pain severity has not been proved.16 insertion of a nasogastric or percutaneous For those from ethnic minorities, whose first endoscopic gastrostomy tube. language is not English and whose culture is different, the difficulties in the expression of Andrew’s case distress are compounded.17 Even when their For Andrew’s* family, this information came formal or informal carers are able to perceive too late. His family were overwhelmed by guilt their pain, they can find it difficult to that they could not get him to eat. The distress communicate the clues effectively to medical of seeing him getting thinner and weaker from staff.18 lack of food and fluid, and the feeling that Having the support of the specialist nurse they would be seen to neglect him, prompted from Willow Wood Hospice provided weight them to call out an out-of-hours GP, who had to the idea that pain relief is required. Our Andrew admitted to the acute hospital. This view is that the best approach is to anticipate occurred amid plans by Andrew’s regular GP and assume pain based on the patient’s to hold a meeting with the family in order to history – looking at disease, injury, procedure discuss his needs and future care, including or surgery.16,19 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2014; 21(1)

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Care m a n a g e m e n t

Marjorie’s case Marjorie,* a widow in her 80s with vascular dementia, had lived in a residential home for a number of years. Over the previous month, she had become increasingly agitated. Antipsychotic medication had been started and referral made to the community mental health team, who referred Marjorie on to us after talking to care home staff and discovering a history of liver cancer and developing jaundice. On assessment, it was found that her family was aware of her poor health and felt that further investigation or cancer treatment would not be in her best interest. The GP felt that her agitation must be due to deterioration of her dementia. Care home staff described the difficulty they had in 8

PAINAD score

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Patient ■ On assessment ■ After intervention ■ Figure 1. Pain Assessment in Advanced Dementia (PAINAD) scores in 18 patients before and after

intervention (where there is no apparent score, the score is actually 0) 80 70 60 NPI score

At initial assessment, we took a history of any conditions likely to cause pain and used the Pain in Advanced Dementia (PAINAD) assessment tool20 to estimate the presence and severity of pain (on a numeric scale of 0–10). The Neuropsychiatric Inventory (NPI) score relates to non-cognitive psychological symptoms rather than to pain itself.21 However, many of the items assessed overlap with indicators of pain, such as irritability, agitation and loss of appetite.22 We used it to complement the PAINAD scores. Figures 1 and 2 give an indication of the effect of our intervention on pain and other symptoms in 18 patients (out of 49 in total) as shown by their PAINAD and NPI scores. In the remaining 31 patients, follow-up assessments after the intervention did not take place, often because death occurred within days of the initial assessment. However, anecdotal reports from relatives and care staff indicated that the intervention had had a positive effect. The possibility that people with dementia might refuse analgesia, even when in obvious pain, should not be overlooked. Buprenorphine transdermal patches (see Box 1) enable pain relief to be provided without having to confront the patient over analgesia four times a day, which is distressing for them and their carers alike. To determine whether treatment without express or implied consent should be given, the burden to the person if treatment is not given (that is, continued pain and distress) must be weighed against the possible adverse effects of the drug.22 In this way, a best-interest decision can be made for those lacking capacity.

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50 40 30 20 10 0 1

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9 10 11 12 13 14 15 16 17 18 Patient

■ On assessment ■ After intervention ■ Figure 2. Neuropsychiatric Inventory (NPI) scores in 18 patients before and after intervention

ensuring compliance with prescribed medication, including simple analgesics. They had witnessed Marjorie being visibly distressed, walking about holding her teddy bear close and crying while talking to it. On the assumption that unrecognised pain may be adding to her agitation, we agreed with the GP that she should be prescribed a low-dose buprenorphine patch. Marjorie lacked capacity to understand the treatment offer, so the prescription was made, after consultation with her family, in her best interest. The dose was increased after a week. On a follow-up visit, Marjorie was found to be relaxed and no longer needing to hold on to her teddy. Soon she was refusing all oral medication, but remained calm thanks to the analgesia; there was no need for antipsychotic medication. Unnecessary hospital admissions Hospital admission can cause considerable distress to people with dementia and their families – previous admission is a factor in family resistance to further admission.25,26 There is a consensus that cardiopulmonary resuscitation is likely to be futile in people EUROPEAN JOURNAL OF PALLIATIVE CARE, 2014; 21(1)

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with advanced dementia27,28 and hospitalisation for intravenous treatment of recurring infections may be less effective than conservative treatment in a familiar environment due to the distress it causes.29,30 At Willow Wood Hospice, the specialist nurse has been involved, via the surrounding hospital palliative care nursing teams, with discharge planning and support for people with dementia who had been stranded on medical wards for many weeks or months. They had been suffering from a decline in functional abilities, refusing food and fluids, often remaining in a fetal position and closing their eyes when anyone approached. Discharge had been delayed and, when the person had declined oral fluids, intravenous or subcutaneous hydration had been started or reinstated because of the professionals’ anxieties about what to do.10,31 Max’s case Our dementia service helped the daughter of Max,* who has vascular dementia, to take him home to die after one month on a medical ward following aspiration pneumonia. She was supported to complete an advance care plan for him, including preparation for the next episode of aspiration pneumonia (the idea being to treat him at home for comfort and avoid another traumatic and stressful hospitalisation). Six weeks later, Max was at home recovering, eating well and participating in conversation. At the time of writing, he is still alive. How many other people could gain weeks of better-quality life if discussions with families and advance care planning were undertaken earlier?

Care management Box 1. Buprenorphine transdermal patches The transdermal route facilitates the provision of adequate analgesia in patients who may be experiencing mild-to-moderate pain and are refusing oral medication due to cognitive impairment associated with dementia.23 Buprenorphine transdermal patches contain low doses of the strong opioid buprenorphine. Following application, discussions between the multidisciplinary team, family and carers can help identify any changes in the patient’s behaviour that may indicate beneficial effects. Buprenorphine patches are available in 5 µg/hr, 10 µg/hr and 20 µg/hr strengths releasing the medication over seven days. They are licensed for the treatment of chronic non-malignant pain of moderate intensity when an opioid is necessary to provide analgesia.24 Patches are applied to hairless dry skin on the upper body, including the back, and they can be taped down if the edges start to peel off. They are unaffected by bathing. Treatment is started with a 5 µg/hr patch (equipotent to 30 mg codeine four times a day or 12 mg oral morphine over 24 hours) and its effect evaluated on Day 3, when a steady state of buprenorphine dose has been achieved in the body. If an increase in analgesia is required, the initial patch is removed and a 10 µg/hr patch is applied instead (alternatively, two 5 µg/hr patches can be used together). Transdermal buprenorphine is usually well tolerated, though more than 10% of patients may have headaches, dizziness, constipation, dry mouth or pruritus. Potentially serious side-effects, such as respiratory depression and anaphylactic reactions, are uncommon. The summary of product characteristics should be consulted for further information on possible interactions and adverse effects.24 Regular review by the prescriber is essential to ensure appropriate, ongoing and patient-centred management ■

The palliative care approach places less emphasis on survival and independence, acknowledging the fragility and interdependence of the individual existence: patients’ vulnerability and dependence are shared with caregivers.3 Advance care plans allow informed choices to be made with family members before crisis situations occur, while there is still time to think.36 In times of crisis, questions around hospitalisation and invasive treatment often arise. The clinical Preparing for the end of life value of advance care planning is clear. One of the recommendations from the recent A recent study found that advance care plans report of the Alzheimer’s Society was that drawn up in primary care could help reduce more support is needed for unplanned hospital people with dementia to plan More support is admissions by 52%.25 32 for their future care. One Sadly, even when it has needed for people component of the Willow been discussed with the with dementia to plan Wood Hospice dementia family and documented for their future care service is to support that hospitalisation is not professional and family carers in the person’s best interest, in recognition of the fact that the end of life is care staff may still insist on it because of approaching. This is an aspect of care that is fear of litigation and charges of neglect, 28,30,33 known to be difficult. Taking this step and because of Care Quality Commission enables goals of care to be changed, a regulations creating pressure to avoid palliative care philosophy to be adopted and death in residential care.25 This may be advance care planning to be discussed.34,35 compounded by the reluctance of GPs to EUROPEAN JOURNAL OF PALLIATIVE CARE, 2014; 21(1)

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Care m a n a g e m e n t sign advance care plans written by care home staff with relatives. Similar frustrating situations can occur when emergency services are called to people’s homes. We have done some work with people who are not in an advanced stage of disease and retain capacity to make decisions in preparation for the future,37 using the advance care plan documentation developed by the hospice.38 This has allowed patients to communicate that they do not want the strain of caring to cause ill health in their carers if their own condition deteriorates. The hope is that this may somehow lessen the guilt that carers may feel if the decision to move the person with dementia into a long-term care facility needs to be made.

Conclusion Within oncology, specialists in palliative care have developed skills in giving advice to people dying at home. Services of this kind for advanced dementia will drive up the quality of end-of-life care as they have done for cancer. End-of-life dementia care is complex and can be fraught with distress and ethical dilemmas. A specialist dementia team working from a hospice base, and that can draw on dementia care expertise and the skills of hospice medical staff, is well positioned to address these issues with competence and calm, and help improve the lives of people with dementia and those caring for them as the end of life approaches. * All names have been changed to protect confidentiality. Acknowledgement The authors would like to thank Dr Charlotte Talbot for her assistance with the graphs. Declaration of interest The authors have no financial interests to declare. References 1. Calanzani N, Higginson IJ, Gomes B. Current and Future Needs for Hospice Care: An Evidence-Based Report. London: Commission into the Future of Hospice Care, 2013. www.helpthehospices.org.uk/EasysiteWeb/ getresource.axd?AssetID=128710&servicetype=Attachment (last accessed 30/07/2013) 2. Lynn J. Palliative care beyond cancer: reliable comfort and meaningfulness. BMJ 2008; 336: 958–959. 3. ten Have HAMJ. Expanding the scope of palliative care. In: Purtilo RB, ten Have HAMJ (eds). Ethical Foundations of Palliative Care for Alzheimer Disease. Baltimore: Johns Hopkins University Press, 2004: 61–79. 4. Hughes JC, Robinson L, Volicer L. Specialist palliative care in dementia. BMJ 2005; 330: 57–58. 5. Sampson EL, Burns A, Richards M. Improving end-of-life care for people with dementia. Br J Psychiatry 2011; 199: 357–359. 6. Scott S, Pace V. The first 50 patients: a brief report on the initial findings from the Palliative Care in Dementia Project. Dementia 2009; 8: 435–441. 7. Sampson EL, Ritchie CW, Lai R, Raven PW, Blanchard MR. A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia. Int Psychogeriatr 2005; 17: 31–40. 8. Volicer L, Hurley A. Hospice Care for Patients with Advanced Progressive Dementia. New York: Springer, 1998. 9. Tapley M, Regan A, Jolley D. Hospice: putting the heart back into dementia care. Journal of Dementia Care 2013; 21(5): 14–15. 10. van der Riet P, Higgins I, Good P, Sneesby L. A discourse analysis of difficult clinical situations in relation to nutrition and hydration during end

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of life care. J Clin Nurs 2009; 18: 2104–2111. 11. Dekkers W. Autonomy and the lived body in cases of severe dementia. In: Purtilo RB, ten Have HAMJ (eds). Ethical Foundations of Palliative Care for Alzheimer Disease. Baltimore: Johns Hopkins University Press, 2004: 115–130. 12. Volicer L. Medical issues in late-stage dementia. Alzheimers Care Q 2005; 6: 20–34. 13. Hoefler JM. Making decisions about tube feeding for severely demented patients at the end of life: clinical, legal, and ethical considerations. Death Stud 2000; 24: 233–254. 14. Cook AK, Niven CA, Downs MG. Assessing the pain of people with cognitive impairment. Int J Geriatr Psychiatry 1999; 14: 421–425. 15. Husebo BS, Ballard C, Sandvik R, Nilsen OB, Aarsland D. Efficacy of treating pain to reduce behavioural disturbances in residents of nursing homes with dementia: cluster randomised clinical trial. BMJ 2011; 343: d4065. 16. Herr K, Bjoro K, Decker S. Tools for assessment of pain in nonverbal older adults with dementia: a state-of-the-science review. J Pain Symptom Manage 2006; 31: 170–192. 17. Shah A, Dalvi M, Thompson T. Behavioural and psychological signs and symptoms of dementia across cultures: current status and the future. Int J Geriatr Psychiatry 2005; 20: 1187–1195. 18. Regnard C, Mathews D, Gibson L, Clarke C. Difficulties in identifying distress and its causes in people with severe communication problems. Int J Palliat Nurs 2003; 9: 173–176. 19. Kovach CR, Noonan PE, Griffie J, Muchka S, Weissman DE. The assessment of discomfort in dementia protocol. Pain Manag Nurs 2002; 3: 16–27. 20. Warden V, Hurley AC, Volicer L. Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. J A Med Dir Assoc 2003; 4: 9–15. 21. Cummings JL, Mega M, Gray K et al. The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology 1994; 44: 2308–2314. 22. Pace V, Treolar A, Scott S. Dementia: From Advanced Disease to Bereavement. Oxford: Oxford University Press, 2011. 23. Hockley J, Stacpoole M. Palliative care in dementia – two nurse’s views. European Journal of Palliative Care 2012; 19: 282–284. 24. BuTrans 5 µg/hr, 10 µg/hr and 20 µg/hr transdermal patch. Summary of Product Characteristics. Cambridge: Napp Pharmaceuticals Limited, March 2010. www.medicines.org.uk/emc/document.aspx?documentid= 16787&docType=SPC (last accessed 31/07/2013) 25. Sampson L, Harrison-Dening K, Greenish W et al. End of life care for people with dementia, 2009. www.mariecurie.org.uk/Documents/ HEALTHCARE-PROFESSIONALS/Innovation/project-report-0210.pdf (last accessed 30/07/2013) 26. Sampson E. Hospital admissions in dementia. In: Hughes JC, Lloyd-Williams M, Sachs GA (eds). Supportive Care for the Person with Dementia. Oxford: Oxford University Press, 2010: 89–104. 27. Post SG. Special care units: end-of-life ethics in advanced Alzheimer’s disease. Alzheimers Care Q 2001; 2: 67–69. 28. Robinson L, Hughes J, Daley S et al. End-of-life care for people with dementia. Rev Clin Gerontol 2005; 15: 135–148. 29. van der Steen J, Ooms M, van der Wal, Ribbe MW. Pneumonia: the demented patient’s best friend? Discomfort after starting or withholding antibiotic treatment. J Am Geriatr Soc 2002; 50: 1681–1688. 30. Birch D, Draper J. A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. J Clin Nurs 2008; 17: 1144–1163. 31. Blakely G, Millward J. Moral dilemmas associated with the withdrawal of artificial hydration. Br J Nurs 2007; 16: 916–919. 32. Kane M. My Life Until the End – Dying Well with Dementia. London: Alzheimer’s Society, 2012. www.alzheimers.org.uk/site/scripts/documents_ info.php?documentID=2017 (last accessed 31/07/2013) 33. Adamson J. Awareness and understanding of dementia in African/Caribbean and South Asian families. Health Soc Care Community 2001; 9: 391–396. 34. Shega JW, Sachs GA. Offering supportive care in dementia: reflections on the PEACE programme. In: Hughes JC, Lloyd-Williams M, Sachs GA (eds). Supportive Care for the Person with Dementia. Oxford: Oxford University Press, 2010: 33–44. 35. Ghiotti C. The Dementia End of Life Care Project (DeLCAP): supporting families caring for people with late stage dementia at home. Dementia 2009; 8: 349–361. 36. Robinson L, Dickinson C, Bamford C et al. A qualitative study: professionals’ experiences of advance care planning in dementia and palliative care, ‘a good idea in theory but …’. Palliat Med 2013; 27: 401–408. 37. Olde M, Rigaud A. Hospital based palliative care and dementia, or what do we treat patients for and how do we do it. In: Purtilo RB, ten Have HAMJ (eds). Ethical Foundations of Palliative Care for Alzheimer Disease. Baltimore: Johns Hopkins University Press, 2004: 80–96. 38. Cardoso A, Tapley M. Multiprofessional toolkit. Tameside and Glossop NHS Foundation Trust, Tameside and Glossop NHS, Willow Wood Hospice, 2009.

Ann Regan, Specialist Nurse in Dementia, Willow Wood Hospice; Michael Tapley, Medical Director, Willow Wood Hospice; David Jolley, Honorary Consultant Psychiatrist, Willow Wood Hospice, Ashton-under-Lyne and Honorary Reader, University of Manchester, UK EUROPEAN JOURNAL OF PALLIATIVE CARE, 2014; 21(1)

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Clinical management

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Antibiotic prescribing for urinary tract infection in hospices in Scotland General guidelines on the treatment of urinary tract infections are not always helpful in palliative care settings, argue Barbara C Wimmer, linda Johnstone, Carolyn Mackay, Elayne harris and alexander B Mullen, who have looked at how such guidelines are

adhered to in three Scottish hospices and propose alternative treatment charts rinary tract infections (UTIs) are one of the most common reasons for antibiotic prescribing in palliative care patients and the main cause of bacteraemia in the elderly.1,2 Moreover, cancer patients are highly prone to infections due to their disease and to cancer-associated treatment.3 Bacteriuria is defined as the existence of bacteria in the urine that may be symptomatic or asymptomatic.4 Among elderly institutionalised patients, there is a high prevalence of bacteriuria, both in men and women (typically 30% and 50%, respectively); most of them are asymptomatic.5 In nursing home inhabitants, up to 10% have a urinary catheter; and, generally, most patients with a long-term urinary catheter develop bacteriuria.5,6 The Scottish Intercollegiate Guidelines Network (SIGN) guideline 88, last updated in July 2012, states that ‘between two and seven per cent of patients with indwelling urethral catheters acquire bacteriuria each day, even with the application of best practice for insertion and care of the catheter’.4 It has to be kept in mind that the risk of infection increases with the duration of catheterisation, although the majority of patients remain asymptomatic.7,8 At the onset of a catheter-associated UTI, if an indwelling catheter has been in place for more than two weeks, and remains indicated, the Infectious Diseases Society of America (IDSA) 2009 International Clinical Practice Guidelines recommend to replace the catheter to help improve symptoms and reduce the risk of subsequent catheter-associated infection.9 This recommendation, along with the

U

EUROPEAN JOURNAL OF PALLIATIVE CARE, 2014; 21(1)

concurrent administration of a single dose of either gentamicin or amoxicillin, also features in local Scottish guidance.10,11 The latest update of the SIGN guideline 88 newly advises, for symptomatic UTI, to change long-term indwelling catheters before starting antibiotic treatment and, when prophylaxis for catheter change is required in the hospital setting, to use a narrow-spectrum antibiotic such as gentamicin.4 Elderly or terminally ill patients cared for in hospice have special needs concerning quality of life, as well as medical needs that are different from those of patients treated in hospital (secondary care) or in the community by a GP (primary care). Research assessing antibiotic prescribing in UK hospices is limited and seen as challenging.12

Key points ● Urinary tract infections (UTIs) are one of the most common reasons for antibiotic prescribing in palliative care patients. ● A study conducted across three hospices in Scotland examined the adherence to local guidelines regarding antibiotic prescribing for UTI and explored the possible reasons for non-adherence. ● Overall, there was a low level of adherence to the guidelines regarding both the choice of antibiotic and the duration of treatment. Adherence was particularly low in catheterised patients. ● The qualitative part of the study highlighted that guidelines do not always take into account the specific needs of hospice patients. ● Two flow charts of alternative treatment approaches were designed that allow prescribers greater flexibility and may be more appropriate than general guidance presently available.

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Copyright © Hayward Medical Communications 2014. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact [email protected]

Cli n i c a l m a n a g e m e n t The aim of our study was to examine Scottish hospices’ adherence to local policies or guidelines regarding antibiotic prescribing for UTI and explore the possible reasons why their prescribing behaviours might deviate from those policies or guidelines.

Methods Quantitative data collection Quantitative data relating to antibiotic prescribing in suspected or diagnosed UTI were collected via a cross-sectional survey of 587 medical records of patients seen over a six-month period (January–June 2011) in three hospices in west central Scotland. Patients with complicated urological catheterisation procedures (for example, involving urethral stents or nephrostomy tubes) and patients commenced on antibiotic treatment prior to hospice admission were excluded from the study, in line with the 2009 IDSA guidelines.9 If patients had been readmitted within one calendar month of their first admission, only one admission was counted. In case recurrent UTI(s) had occurred within the six-month study period, both the first and the following UTI(s) were included. From the 587 records screened, 98 cases of patients with suspected or diagnosed UTI receiving antibiotic treatment were identified. These were evaluated to check whether they had been dealt with in accordance with the local prescribing guidelines in use. The guidelines in use in the three hospices were Therapeutics: A Handbook for Prescribers10 from NHS Greater Glasgow and Clyde, and Empirical First Line Antibiotic Therapy for Adult Patients from NHS Lanarkshire.11 Quantitative data analysis Inferential statistical tests were applied to the quantitative nominal data using the online software tool GraphPad® (Fisher’s exact test). P-values were calculated over a 2x2 contingency table to identify statistically significant differences between local guidelines and actual prescriptions regarding the choice of antibiotic and the duration of treatment in women and men. A 95% confidence interval (CI) was calculated. With the aid of Minitab® 16, tests for skewness of data were conducted. The duration of treatment was only assessed in those patients in which the antibiotic had been chosen in accordance with the guidelines. 12

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The analysis of the choice of antibiotic and duration of treatment could generate one of the following three answers: ● YES: if the local guideline had been applied (correct antibiotic and correct duration of treatment) ● JNA (justified non-adherence): if the prescriber had not followed the guideline but this was justified; for example, if the patient had an intolerance or allergy to the recommended antibiotic; if microbiology recommended an alternative antibiotic; or if the patient refused to take an antibiotic ● UNA (unjustified non-adherence): if the prescriber had not followed the guideline but this was not justified. To calculate p-values, YES answers were compared with the sum of JNA and UNA answers (= non-YES answers). Levels of adherence were categorised as high, intermediate or low as per Hakonsen et al:13 ● High level adherence: >75% ● Intermediate level of adherence: 50–75% ● Low level of adherence: