Patient and family experiences of palliative care in ... - SAGE Journals

487568 2013

PMJ28110.1177/0269216313487568Palliative MedicineRobinson et al.

Original Article

Patient and family experiences of palliative care in hospital: What do we know? An integrative review

Palliative Medicine 2014, Vol 28(1) 18–33 © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216313487568 pmj.sagepub.com

Jackie Robinson1,2, Merryn Gott1 and Christine Ingleton3

Abstract Background: In most developed countries, acute hospitals play a significant role in palliative care provision and are the setting in which most people die. They are often the setting where a life-limiting diagnosis is made and where patients present when symptoms develop or when they are not well managed. Understanding the experiences of hospital admissions for people with a life-limiting illness and their families is essential in understanding the role acute hospitals play in providing palliative care. Aim: The aim of this review is to synthesise current evidence regarding the experience of palliative care in an acute hospital setting from the perspectives of patient and family. Design: An integrative review was completed using standard processes followed by a process of data extraction and synthesis. Data sources: Using predefined search terms, literature was sourced from five electronic databases including MEDLINE (EBSCO), CINAHL, EMBASE, Cochrane and PsycINFO between January 1990 and November 2011. Reference lists from relevant articles were cross-checked and pertinent journals hand searched for articles. Results: In total, 32 articles were included in the review. Five recurring themes were identified from the synthesised data: symptom control and burden, communication with health professionals, decision-making related to patient care and management, inadequate hospital environment and interpersonal relationships with health professionals. Conclusion: This review has identified that, largely as a result of study design, our knowledge of patient and family experiences of palliative care in an acute hospital remains limited to discrete aspects of care. Further research is required to explore the total patient and family experience taking into account all aspects of care including the potential benefits of hospital admissions in the last year of life.

Keywords Palliative care, hospitalisation, patient admission, patient satisfaction, professional–family relations

Background In most developed countries, acute hospitals play a significant role in palliative care provision. Evidence shows that at any one time, 13%–36% of hospital inpatients meet the criteria for palliative care need.1–3 Hospitals are often the setting where a life-limiting diagnosis is made and where patients present when symptoms develop or when they are not well managed.4 Furthermore, for people with illnesses such as chronic obstructive pulmonary disease (COPD) and congestive cardiac failure, hospitals provide episodic care over many years for illness exacerbations during which death could occur.5 In most developed countries, hospitals are also the setting in which most people will die. A recent comparison of institutional deaths across 45 countries concluded that for half of those countries, more than 54% of deaths occur in the hospital.6 One factor that is impacting upon the role of the acute hospital in palliative care is the increasing use of technology.

Widespread use of life supporting technologies that keep people alive who would otherwise die within a foreseeable but usually uncertain period of time has radically transformed the life expectancy of some people with a life-limiting illness.7 Like other areas of health care, palliative care has embraced the advancement of health technologies, and it is now common place to offer, what some may consider as being invasive,8 interventions to achieve symptom control 1School

of Nursing, University of Auckland, New Zealand District Health Board, Auckland, New Zealand 3School of Nursing and Midwifery, University of Sheffield, Sheffield, UK 2Auckland

Corresponding author: Jackie Robinson, Auckland City Hospital Palliative Care Team, Auckland District Health Board, Private Bag 92024, Auckland Mail Centre, Auckland 1142, New Zealand. Email: [email protected]

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Robinson et al. and improve quality of life while, in some instances, extending life. Many of these interventions can only be provided in a hospital environment and may impact the way in which palliative care is delivered.9,10 As a result of the global economic crisis, governments are searching for ways to make limited public health spending go further. Studies looking at inappropriate or avoidable admissions among patients with palliative care needs and economic analyses of hospital use in the last year of life are being carried out to ensure that health resources are being used wisely.11,12 In addition, patient and family preferences to be cared for at home or in a hospice rather than in a hospital setting have been well established in the literature.13,14 A systematic review of the literature by Brereton et al.15 has demonstrated the inadequacies of the hospital environment in providing palliative care. These factors are becoming key drivers at a policy level to reduce acute hospital admissions among patients with a life-limiting illness. However, what is missing in this debate is how patient and families experience palliative care in hospital. Understanding the experiences of hospital admissions for patients with a life-limiting illness and their families is essential in understanding the role acute hospitals play in providing palliative care. For the purpose of this review, palliative care has been defined, in line with the Canadian Hospice Palliative Care Association definition, as an approach that ‘aims to relieve suffering and improve the quality of living and dying’ and is ‘appropriate for any patient and/or family living with, or at risk of developing, a life-threatening illness due to any diagnosis, with any prognosis [and] regardless of age’.16

Aim The aim of this review is to synthesise existing international evidence regarding the experience of palliative care in an acute hospital setting from the perspectives of patient and family. Synthesising literature in this way helps to provide a more comprehensive understanding of a particular topic to inform future research, practice and policy initiatives.17

Design An integrative review was completed in keeping with the process outlined by Whittemore and Knafl.17 A review of the literature was undertaken followed by a process of data extraction and synthesis. Quantitative and qualitative studies that provided data regarding the experiences of palliative care in a hospital setting from the perspectives of patients and families were included.

Search process Using predefined search terms (see Table 1), MEDLINE (EBSCO), CINAHL, EMBASE, Cochrane and PsycINFO

Table 1. Search terms used in electronic database search. Search terms Palliative care Hospital Patient Family

Palliative care, supportive care, terminally ill, hospice care and end-of-life care Hospital admission, readmission, hospitaliz(s)ation and length of stay Patient experience, patient perspective, patient satisfaction and patient preference Family experience, family perspective, family satisfaction and family preference

were searched for studies published between January 1990 and November 2011. The search was carried out by J.R. with assistance from a specialist librarian. Appropriate wildcards were inserted to search for word ending truncations where necessary. Reference lists from relevant articles were cross-checked. The following journals were hand searched for relevant articles between 1990 and 2011: Palliative Medicine, Journal of Palliative Medicine, BMJ Supportive and Palliative Care, Journal of Pain and Symptom Management, International Journal of Palliative Nursing and BMC Palliative Care. Details of the study identification and selection process are shown in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow chart (Figure 1). A rigorous approach to the search process identified 301 studies, which were examined for relevance to the review topic. Studies had to refer to the experience of care in hospital among patients with palliative care needs and/or their family and include the views of patients and/ or families. Studies also had to refer to an adult population over the age of 18 years and be available in English. Studies prior to 1990 were excluded as it was felt that palliative care as an integral component of care in an acute hospital setting was less well developed prior to that time.18 In addition, studies conducted in the emergency department (ED) and intensive care unit (ICU) were also excluded because there are unique issues related to patient and family care that are specific to these clinical environments. A summary of inclusion and exclusion criteria can be found in Table 2. Study selection was conducted in a systematic sifting process over three stages: title, abstract and full text. At each stage, studies were rejected that definitely did not meet the inclusion criteria. Using the title and abstract, each paper was assessed by J.R. and rejected if they did not meet the inclusion criteria. Those that met the criteria were then independently assessed by J.R. and one of the other authors; in cases where there were disagreements of inclusion, consensus was reached by discussion. All literature was retained as background information. Overall, 32 studies satisfied the inclusion criteria (see Table 3).

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Palliative Medicine 28(1)

9 studies from hand searching and cross referencing

301 studies idenfied through database searching

310 studies screened

56 full text studies retrieved for more detailed evaluaon

254 studies rejected at tle/abstract stage

24 full text studies excluded, with reasons

Studies meeng inclusion criteria and included in review (n=32)

Qualitave (n=8)

Quantave (n=20) Mixed methods (n=4)

Figure 1. PRISMA flow chart.

PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Table 2. Inclusion and exclusion criteria.

Data extraction and synthesis

Inclusion

Exclusion

Written in English language

Written in languages other than English Articles focusing on health professional’s views and case reviews Palliative care in ICU or ED Not focusing on palliative or end-of-life care Articles before 1990

All data relevant to patient and family experiences of hospital admissions were examined using a four-step process to identify key themes as outlined in Table 4. The data extraction process was reviewed by all authors and agreement sought on the identification of key themes.

Articles focusing on patient and family views Palliative care in hospital Palliative or end-of-life care Articles after 1990 All types of studies

ED: emergency department; ICU: intensive care unit.

Data evaluation Evaluating the quality of studies in a systematic review relies on a narrow sampling frame and similar research designs. In the case of integrative reviews, the inclusion of both qualitative and quantitative studies makes the process of data evaluation difficult17 and may provide little value. Furthermore, palliative care poses its own specific challenges to systematic review methods; the research base is relatively limited, and the complexity of methodological and ethical issues results in an evidence base largely unsuitable for traditional forms of review and synthesis.49 For these reasons, data evaluation was not undertaken in this review.

Results Through a search of electronic databases, 301 studies were identified with a further 9 found through hand searching of relevant journals. Of the 310 studies screened by title and abstract, a total of 56 full-text studies were retrieved for further review, and 24 studies were excluded because they did not meet the inclusion criteria. A total of 32 studies satisfied the inclusion criteria (see Table 3). The selected studies consisted of a mixture of qualitative (n = 8), quantitative (n = 20) and mixed methods studies (n = 4). Of the studies, 10 related to patients with cancer,19,29,30,36,38–43 2 related to patients with stroke34,45 and 1 with COPD.35 Four25,27,37,46 studies did not state diagnosis. Two articles used two diagnostic groups in the same study; one compared patterns of care for patients with non-smallcell lung cancer with severe COPD.24 The second study compared experiences of patients who died of end-stage dementia to those who died of congestive heart failure.51 The remaining 13 studies included patients from a variety of different diagnostic groups.20–23,26,28,31–33,44,47,48,52

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Robinson et al. Table 3. Patient and family experiences of palliative care in hospital. Author; country

Aims/objectives

Diagnosis

Participants

Methods

Relevant findings

AddingtonHall and O’Callaghan;19 UK

To compare hospice inpatient care and hospital care for cancer patients in the United Kingdom from the perspective of bereaved relatives

Cancer

40 bereaved family members

Postal survey

Baker et al.;20 USA

To examine factors associated with family satisfaction with end-oflife care in the study to understand prognoses and preferences for outcomes and risks of treatment

Multiple


Telephoneadministered survey

Billings and Kolton;21 USA

To assess family satisfaction with end-oflife care in the hospital and to gauge the extent of bereavement followup

Multiple



Borum et al.;22 USA

To review the effects of patient race on intervention and end-oflife decisions in seriously ill patients in the hospital

Multiple

9105 seriously ill hospitalised patients

Patient interviews

Cantor et al.;23 USA

To explore whether perceiving that a physician was clearly in charge is associated with reports by surviving next of kin about the responsiveness of physicians to symptoms in hospitalised patients

Multiple


Telephoneadministered questionnaire survey

Bereaved relatives rated hospice care more highly than care in hospital Variables explored included communication, involvement in decisionmaking, symptom control and personal cares 84% reported satisfaction with all aspects of patient care 69.5% were satisfied with all aspects of communication and decision-making Satisfaction was greater if patient was perceived to have less pain when patient preferences were followed when death occurred during the index admission when financial impact was less 57% were most satisfied with the overall care and communication Comments expressed concerns regarding lack of privacy, dignity and comfort for patients and families communication issues emergency room problems lack of follow-up Race was not associated with level of pain or control of pain Differences in care based on patient race were either small or were shown not to affect outcome adversely More than 80% reported that the patient experienced serious pain, dyspnoea or affective distress often during their final hospital admission Ratings of the adequacy of physicians to respond to distressing symptoms were not consistently positive More than half had not expected that the patient would die during the hospital admission until near death (Continued)

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Table 3. (Continued) Author; country

Aims/objectives

Diagnosis

Participants

Methods

Relevant findings

To compare the course of illness and patterns of care for patients with non-small-cell lung cancer and severe COPD

Lung cancer and COPD

939 hospitalised patients with lung cancer and 1008 hospitalised patients with COPD


Conner et al.;25 UK

To explore the views of patients referred to specialist palliative care teams about the health care services, including but not confined to palliative care

Not stated

10 patients who had experienced a hospital admission

Unstructured face-to-face interviews

Desbiens et al.;26 USA

To identify the symptom combinations and factors associated with symptom burden in seriously ill hospitalised patients

Multiple

1582 hospitalised patients

Face-to-face interviews

Dunne and Sullivan;27 UK

To gain understanding and insights into the lived experience of families who journeyed with their loved one through the palliative phase of illness as inpatients in the acute hospital setting

Not stated


Unstructured, in-depth interviews

Patients and families reported pain and dyspnoea being problematic for both groups Patients with lung cancer more frequently had severe pain and patients with COPD more frequently had severe dyspnoea Overall patients reported low levels of anxiety and depressive affects Participants reported difficulties in communicating with health professionals including information regarding diagnosis and prognosis Hospital environment left people feeling like they were not valued Specialist skills and knowledge was valued by participants Pain, dyspnoea, anxiety and depression caused the greatest symptom burden and accounted for 67.3% of all symptoms that were at least moderately severe at least half of the time The hospital was felt to be an inappropriate place to die because of a lack of privacy and the busy environment Hospitalisation prior to death was filled with helplessness, loss of control and frustration with an inability to perform their usual role as carer All participants focused on pain as the symptom that caused most distress to them and to the patient Some found communication with health professionals unsatisfactory while others had a positive experience

Claessens USA

et al.;24

(Continued)

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Robinson et al. Table 3. (Continued) Author; country

Aims/objectives

Diagnosis

Participants

Methods

Relevant findings

Dzul-Church et al.;28 USA

To describe experiences of serious illness including concerns, preferences, and perspectives on improving end-of-life care in underserved inpatients To measure, through the perceptions of relatives/ main carers, the quality and nature of care provided to people dying of cancer in the two main places of death: the domestic home and hospitals

Multiple


Semistructured face-to-face interviews

Relationships with health professionals were often difficult for some participants feeling that they were not treated with respect or dignity and not valued as human beings

Cancer

55 bereaved lay carers

Semistructured interviews

18 participants stated good care, 4 excellent care and 5 unsatisfactory care 23 made positive comments about care that focused on good explanations staff being available or spending time with the patient or carer staff providing care to the best of their ability 28 made negative comments related to understaffing lack of service provision poor communication decisions made by doctors nursing care 67.6% were satisfied with information provided by medical teams Aspects of care that needed improving more information from doctors a single room better treatment from nurses better communication between medical teams better control of symptoms better access to doctors 41% did not know that the patient was dying High degree of satisfaction with care provided by hospital nurses and doctors Wards were criticised as being busy and noisy Elements rated as ‘extremely important’ and not ‘completely satisfied’ by patients and Family caregivers: To have an adequate plan of care and health services available upon hospital discharge To have relief of symptoms To receive adequate information

Field and McGaughey;29 Northern Ireland

Formiga et al.;51 Spain

To evaluate the circumstances related to death in end-stage noncancer patients dying in two acute care hospitals and their caregivers opinions about death

End-stage dementia and congestive heart failure



Herd;30 UK

To describe terminal care in one health authority district comparing the findings in a rural area with those in urban areas

Cancer



To enhance our understanding of what high-quality end-of-life care means from the perspectives of Canadian hospitalised patients who have end-stage medical disease and their family members

Multiple

440 hospitalised patients and 160 family caregivers

Face-to-face– administered questionnaire

Heyland et al.;31 Canada

(Continued)

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Aims/objectives

Diagnosis

Participants

Methods

Relevant findings

Jacobs et al.;32 USA

To characterise and identify factors influencing the quality of care provided to dying hospitalised patients and to find opportunities for improvement

Multiple


Telephoneadministered structured interview

Koffman and Higginson;33 UK

To compare the final year of life of firstgeneration black Caribbean’s and white patients with advanced disease focusing on their satisfaction with service provision in both primary care and acute settings

Multiple


Face-to-face– administered questionnaire survey

Payne et al.;34 UK

To identify patients’ and family members’ experiences of acute stroke and their preferences for end-oflife care

Stroke

29 hospitalised patients and 25 of their family members


53% of participants were much more satisfied with the physical aspects of patient care compared to emotional care 60% felt involved in patient care decisions Over half did not expect death until the final week Frequent reports of inadequate communication with physicians with limited information given and explanations insufficient Participants ratings of care for Caribbean patients were inferior across all care settings Less Caribbean patients reported that they were given a choice about their treatment in hospital compared to white patients Doctors faced criticism for lack of cultural sensitivity to black Caribbean families Nurses were criticised for their lack of empathy with dying patients, their reluctance to devote adequate time to patients and their carers and their insensitivity to family who wanted to stay with the dying patient Difficulties related to communication and information giving was highlighted by patients and families While participants expressed a desire to be involved in medical decision-making, they found this difficult when they were asked to make choices about interventions that they perceived as being life or death choices Uncertainty regarding potential for recovery or likely death was confusing for families (Continued)

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Aims/objectives

Diagnosis

Participants

Methods

Relevant findings

Rocker et al.;35 Canada

To describe ratings of importance and satisfaction with elements of end-oflife care, information needs, decision-making preferences, obstacles to preferred location of death, clinical outcomes and health care use before and during hospital admissions for patients with COPD

COPD

118 hospitalised patients with advanced COPD and 166 patients with cancer

Face-to-face– administered questionnaire survey

Rogers et al.;36 UK

To investigate the sources of dissatisfaction with hospital care in the last year of life and to assess the potential of the palliative care approach to improve patient satisfaction

Cancer


Postal survey

A descriptive account of families’ assessments of communication at life’s end in the hospital focusing in particular on their understanding of conversations about prognosis and its implications

Not stated



Important elements of care: Not to be kept alive on life support when there is little hope of meaningful recovery To have relief of symptoms To have adequate plan of care and health services available to be cared for at home Most satisfaction with elements: To receive adequate information about disease and treatment options To have trust and confidence in doctors To know which doctor is in charge 31% made only positive comments 59% made at least one negative comment Dissatisfaction with: Communication with health professionals Getting information Communication between hospital and community services Personal care Bureaucracy Late or prolonged diagnosis Medical interventions Hospital environment Variation in how much family wanted to know and how much they wanted the patient to know which went unnoticed by doctors Families felt let down by doctors who did not clearly address prognosis and make recommendations for palliative care Conversations about prognosis were vague and often tempered with more information about treatment left families confused Family were unprepared for discussions about withdrawal of treatment and felt that they had to choose life or death for their family

Russ and Kaufman;37 USA

(Continued)

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Aims/objectives

Diagnosis

Participants

Methods

Relevant findings

Seale and Kelly;38 UK

To compare the quality of inpatient care for dying people in hospice and hospital and make comparisons with findings from earlier studies

Cancer

66 bereaved spouses

Structured interviews

To explore terminally ill patients and their families experiences of hospital end-of-life care

Cancer


Participant observations, informal conversations and open interviews

Spichiger;40 Switzerland

To explore the experiences of family members of terminally ill patients with hospital end-of-life care

Cancer

10 family members

Open interviews with integration of observation data from larger study


To elicit patients’ experiences of hospital life and the meanings they assigned to the hospital as their temporary residence

Cancer

10 hospitalised patients and 10 family members

Participant observation, patient conversations and semistructured interviews with family members

Hospital staff more likely to be seen as busy, atmosphere large and noisy and less ‘like a family’ Patients less likely to know they were dying Symptom control good in both groups Experiences of being in hospital were on a continuum of feeling like being in a prison to feeling a relief from suffering with uncontrolled symptoms Health professionals friendly behaviour were valued but had to be rooted in empathy, consideration and respect to be valued Experience with care interventions generally very positive Witnessing suffering and experiencing negative reactions from patients were difficult for families Integration occurred if families were made to feel welcome, were well informed and had access to the patient at all times Family place needs of patients ahead of their own but were limited by their living situations Patient and illness are the focus of their thoughts with no space for anything else such as friends and social activities The patient describes existence in the hospital on a continuum from ‘prison’ to ‘heaven’ and could be described as ‘guests of necessity’ Patient’s experience of hospital was not constant and changed over the time of a hospital stay and some experiences faded away


(Continued)

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Aims/objectives

Diagnosis

Participants

Methods

Relevant findings

Sykes et al.;42 UK

To evaluate the satisfaction with palliative care services among a balanced population drawn from one health district To clarify how terminally ill patients think and feel while hospitalised

Cancer

106 bereaved family carers


Cancer



All preferred care in a smaller hospital Only 40% of those who died in hospital had a family member present Participants reported feeling safe in hospital when pain was controlled Feelings of anxiety about impact of long hospital stay on families was expressed by participants Overall, those dying in institutions have unmet needs for symptom management, physician communication, emotional support and being treated with respect compared to those dying at home More likely to rate care as excellent if they felt actively involved in discussions with doctors and nurses about patients condition were able to discuss their worries and fears perceived that doctors and nurses know enough about their condition received enough help available to help with personal care needs Relatives were not informed by the doctor that the patient was dying, and when they were told, they felt unprepared for it

Tanaka et al.;43 Japan

Teno et al.;44 USA

To evaluate the US patients dying experience at home and in institutional settings

Multiple



Young et al.;45 UK

To explore the determinants of satisfaction with health and social care services in the last 3 months and 3 days of life as reported by bereaved relatives of those who died from a stroke in an institutional setting

Stroke

165 bereaved family

Postal survey

Costello;46 UK

To explore the experiences of dying patients and nurses working in three elderly care wards focusing on the management of care for dying patients To characterise the experience of dying from the perspective of surrogate decision makers, usually close family member

Not stated


Multiple


Participant observation, informal conversations and semistructured interviews Semistructured interviews

To improve end-of-life decision-making and reduce the frequency of a mechanically supported, painful and prolonged process of dying

Multiple

9106 patients

Lynn et al.;47 USA

SUPPORT Principal Investigators;48 USA

Face-toface semistructured interviews

Almost 40% patients were said to have had a symptom that at least half of the time was moderate or extreme in severity in the last 3 days of life 73% of participants said that patients found it difficult to tolerate these physical symptoms 22% of patients reported moderate to severe pain at least half the time 50% of family members felt that the patient experienced moderate to severe pain at least half the time during the last 3 days of life (Continued)

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Aims/objectives

Diagnosis

Participants

Methods

Relevant findings

Desbiens et al.;26 USA

To evaluate the pain experience of seriously ill hospitalised patients and their satisfaction with control of pain during hospitalisation To understand the relationship of level of pain and dissatisfaction with pain control to demographic, psychological and illness related variables (SUPPORT)

Multiple

5176 patients

Face-to-face interviews

Nearly 50% of participants reported pain; 14.9% reported extremely severe pain of any frequency or moderately severe pain occurring at least half of the time 14.9% were dissatisfied with pain control Higher reports of pain were associated with: older age high dependence in ADLs more co-morbid conditions increased anxiety and depression poor quality of life

COPD: chronic obstructive pulmonary disease; ADL: activities of daily living.

Table 4. Process of data extraction and synthesis. Step

Process

Familiarisation with the data

Immersion in the data by reviewing each study thoroughly, extracting and tabulating qualitative and quantitative data. Focusing on data related to the review question (patient and family experiences) codes were manually attached to the data. Codes were sorted into overarching themes within the tabulated data. Potential themes were refined and discussed with M.G. and C.I. Themes were discarded if there was not enough data or the data were too diverse.

Generation of initial codes Searching for themes Identifying themes

Source: adapted from the study by Braun and Clark.50

Seven studies used data from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT).20,22,24,26,47,48,52 The objective of SUPPORT was to ‘improve end of life decision-making and reduce the frequency of a mechanically supported, painful and prolonged process of dying’ (p. 1).48 Data were collected across five teaching hospitals in the United States. The perspectives of bereaved families were captured in 17 of the studies.19–21,23,27,29,30,32,33,36–38,42,44,45,47,51 The time from death to data collection ranged from 4 weeks

to 2 years. Four studies included the views of both patients and families.31,34,39,41 Two studies sought the family’s perspectives to describe their experience of having a family member in hospital in relation to things such as decision-making and communication with health professionals. In those studies that collected data directly from patients, there was variation in how participants were identified as being ‘palliative’ or near the end of their life. The majority based this on diagnoses rather than estimated prognosis. Seven studies compared palliative care across a number of different care settings including hospital.25,29,30,33,42,44,45 Two studies specifically compared palliative care in a hospital setting with care provided in a hospice.19,42 One study compared patient and family experiences of care in hospital, home and aged residential care.44 The following five recurring themes were identified from the synthesised data: (a) Symptom control and burden; (b) Communication with health professionals; (c) Decision-making related to patient care and management; (d) Inadequate hospital environment; (e) Interpersonal relationships with health professionals.

Symptom control and burden Of the articles identified, 19 examined patients’ and families’ experiences of care in relation to symptom control and/or symptom burden in the acute hospital setting. Two articles concluded that both patients and families rank

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Robinson et al. control of pain and other symptoms as extremely important, yet identified it, however, as an aspect of care they are consistently most dissatisfied with.31,35 Furthermore, two articles reported that both patients and families will prioritise relief of pain or maintaining comfort over prolonging life.24,32 Overall, the reviewed evidence indicates that hospitalised patients with a serious life-threatening illness report a high symptom burden. In a study by Desbiens et al.,26 nearly half of the patients interviewed reported having one or more symptoms of at least moderate severity occurring at least half the time or of extreme severity of any frequency. Pain, dyspnoea, anxiety and depression caused the greatest symptom burden. Family also reported a high level of symptom burden for patients who were dying in hospital. For example, in one study, more than 80% of family participants reported that their family member frequently experienced serious pain, dyspnoea or affective distress (confusion, depression or emotional distress) during their final hospital admission.23 Two studies compared families’ experiences of their family member’s symptom control in hospital and hospice. Addington-Hall and O’Callaghan19 found that significantly more patients had pain controlled ‘all of the time’ in hospice compared to hospital (81% c/t 39%). However, there were no differences found in the prevalence of pain or the distress it caused. By contrast, Seale and Kelly38 reported that relief of pain and other symptoms was achieved in the majority of patients in hospital with no significant differences in the effectiveness of treatments across the two settings. Dissatisfaction with pain and symptom control from the perspectives of both patients and families featured highly in the reviewed studies. Desbiens et al.52 found that 50% of seriously ill patients reported extreme or moderate severe pain at least half the time and 15% were dissatisfied with pain control. In the study by Lynn et al.,47 almost 40% of conscious patients were reported by surrogates as having severe pain and dyspnoea in the last 3 days of life, and three quarters of these families found this distressing.47 The impact of witnessing a patient in pain was significant for families and became a focus of distress when left uncontrolled.27

Communication with health professionals Patients and families experiences of communication with health professionals in the acute hospital setting was a dominant theme in the review, featuring in 17 studies. The disciplinary background of the health professionals involved was not stated in the majority of studies reviewed. Most studies drew upon bereaved families experiences of interactions with health professionals (n = 14). Although there were some reports of positive experiences, across the reviewed studies, the overriding view from both patients

and families was that the standard of communication with health professionals in the acute hospital setting is poor. Patients and families criticised the quality and type of information received from health professionals with reports of difficulties in understanding the language used.33 This was particularly so for conversations involving prognosis. Families also felt that they were not always kept informed of the patient’s condition. As a result, death was typically perceived as happening ‘suddenly’. The amount and type of information provided by health professionals were reported in four studies to not be tailored to individual preferences. Doctors’ ‘talking over’ unconscious patients was identified as being particularly concerning to families who feared that the patient was unable to express their preference for information about prognosis and might be told something they did not want to know.34 A common theme related to the way in which information was communicated to patients and families in hospital; this was reported to often be done badly particularly when health professionals were giving ‘bad news’.29,36,38 Furthermore, in one study, participants felt that staff lacked the skills required to have these difficult conversations.36 Studies reported that patients and families perceived busy staff as being unavailable.27 This sense of unavailability was exacerbated further when visiting families experienced difficulties finding a doctor or nurse who could provide an update on the patient’s condition. Constantly having to seek out staff to get updated information about the patient coupled with the fact that staff rarely approached them to ask whether there was anything they needed to know, left the family feeling dissatisfied.

Decision-making related to patient care and management In a study by Young et al.,45 being involved in decisionmaking about patient care and management was found to be a predictor of family satisfaction in the last 3 days of life. Both patients and families rated being ‘involved in decisions regarding treatment and care’ as an important element of end-of-life care.31 According to the studies reviewed, the majority of patients and families felt that they were involved in decisions related to patient care and treatment as much as they wanted to be.20 Heyland et al.31 found that over 80% of participants, including both patients and families, were satisfied or highly satisfied with how they were involved in decision-making during a hospital admission. Addington-Hall and O’Callaghan19 found that families were more likely to report that they had been involved in decisions about the patients’ care in hospice than in a hospital setting. A number of factors were identified in the reviewed studies as impacting on a family’s ability to contribute and participate effectively in end-of-life decision-making

30 within hospital. This included a lack of information about care and treatment options, lack of knowledge about the patient’s condition, uncertainty regarding prognosis, difficulties in obtaining information and receiving insufficient explanations about what staff were doing and why.34 Two studies reflected on how families had difficulties making decisions that they perceived to be a matter of ‘life or death’ for the patient, even when death was inevitable.34,37 In these situations, families felt that using health statistics related to the patient’s chances of recovery was not helpful. Feeling rushed into making these decisions increased the family’s distress. Payne et al.34 in a study on end-of-life issues in stroke found that families’ perception of what constitutes a ‘good death’ influenced their level of comfort in making decisions about resuscitation and withdrawing treatment.

Inadequate environment In the articles reviewed, the hospital environment was criticised as being noisy and busy and an inappropriate place to die.27,30,38 The perception of busyness within the hospital resulted in patients and families feeling as if they were ‘lost in the numbers’, which left them feeling unvalued and uncared for.25 In a study by Dunne and Sullivan,27 family felt that a lack of privacy impacted on their ability to have conversations with the patient at a time when they wanted to talk about personal issues. In addition, families commented on a lack of interview rooms to talk privately to staff. As a result, families felt self-conscious at expressing strong emotion in public places when having conversations about end of life. The lack of single rooms for dying patients was a concern for families who worried about the dying patient being disturbed by agitated and confused patients in multibed rooms. Families also expressed concerns for recovering patients in the room being distressed by watching someone dying.34 In studies by Rogers et al.36 and Spichiger,40 hospital bureaucracy was seen as being a barrier to effective care. Admitting procedures did not accommodate the care required to keep a patient comfortable,36 and visiting hours were inflexible causing families to feel that they were in the way if they were present outside visiting hours. Patients were moved frequently within and between wards and at a time when families perceived them as being too ill to be moved.27

Interpersonal relationships with health professionals In the articles reviewed, patients and families were more inclined to remember those health professionals who took the time to show empathy and kindness. Some families felt

Palliative Medicine 28(1) that nurses did not take the time to show empathy towards the patient and were insensitive to families who wanted to stay with the patient.53 This was particularly difficult for those families who were the patient’s main caregiver prior to the hospital admission. The lack of integration of a family’s caregiving role by hospital staff led to feelings of helplessness in one study.27 Family perceived busy nurses as not having time to spend with patients to find out what was important to them. In a study by Spichiger,39 this left patients and families feeling forgotten and not cared for. In contrast, when families felt cared for, it was often in response to staff who were attentive to their needs, appeared approachable and friendly and checked in frequently with family to make sure they had what they need. In the study by Young et al.,45 there was a high correlation with patient satisfaction and being treated with respect and dignity.

Discussion This integrative review provides an overview of international evidence regarding patient and family experiences of palliative care in a hospital setting. The evidence suggests that patients experience a significant symptom burden with poor management of symptoms while in hospital. The hospital setting is considered to be an inappropriate environment for dying patients, being too busy and noisy and lacking privacy. Being involved in decision-making related to patient care and management can be difficult for families, and a number of factors impact on their ability to do this effectively. Furthermore, patients and families experiences of communicating with health professionals and establishing a positive relationship are challenging in the hospital setting. Differences in patient and family experiences of palliative care with different diagnoses have been reported in previous research. Those with a non-cancer illness are more likely to experience repeated hospital admissions54 and less likely to receive input from hospice palliative care services compared to those with cancer55,56 despite the fact that their palliative care needs can be significant.57 The studies identified by the review included patients with a wide range of diagnoses and were at varying stages of the illness trajectory, although most studies did not report details of illness stage. This makes it difficult to come to any conclusion regarding differences in patient and family experiences of hospitalisations by diagnosis or prognosis. Moreover, a number of design issues were identified in the studies reviewed, and as a result, we only have a limited understanding of the overall experiences of patient and family. First, the use of satisfaction-based studies limits our understanding of the patient and families’ overall experience of care in hospital. While satisfaction surveys are used widely to elicit the views of service users, they often use closed questions addressing the priorities of the service

31

Robinson et al. provider or researcher rather than the service user. In addition, expectation is considered to be a major determinant of satisfaction and is largely related to an individual’s perceptions of the benefits of care and the extent to which these meet their expectations.58 However, this was not addressed in any of the studies. Second, using symptom prevalence as an indicator of patient’s overall experience of palliative care in hospital is limiting. It would not be unusual to find patients in a hospital setting with a high symptom burden during a period of acute illness, and in fact, this is often what precipitates an admission to hospital.4 In view of the fact that the hospital setting is often criticised as being poorly prepared to provide adequate symptom control at the end of life,59,60 exploring the effectiveness of symptom management may be more useful. Third, using patient proxies provides a limited understanding of patient experience. In total, 15 studies in the review used patient proxies to a varying degree as a way of understanding the patient’s experience of care in hospital. This included information regarding the severity of symptoms such as pain and dyspnoea. While data collected after death from proxies are a vital source of information in palliative care, the validity of reporting has been questioned. Factors such as the previous relationship with the patient, caregiver burden and an individual’s beliefs and expectations of care can impact on the congruence between patient and proxy reporting. Proxies have been shown to be reliable reporters on the quality of services and on observable symptoms; however, agreement is poorer for subjective symptoms such as pain, anxiety and depression.61 Accuracy of recall is influenced by the period of time between the experience and the recollection of the experience. In those studies reviewed that used data collected from family, all but one study surveyed families who were bereaved. The time from death to the collection of data varied considerably and ranged between 1 month and 2 years. Retrospective data collection from families post bereavement has been shown to change significantly over time particularly in regard to symptoms such as pain and depression.62 Finally, comparing experiences of hospital care with that which is provided in other settings such as hospice may not be that useful. Some aspects of hospital care are unlikely to ever meet the same standard as hospice care. For example, the homely environment provided by hospices is difficult to emulate in a hospital setting.15 Multibedded rooms are common place and patient turnover is high. Providing an appropriate level of privacy, cleanliness and easy proximity to family and friends has been identified by patients, families and health professionals as being important in hospital end-of-life care,15 and yet the hospital continues to be cited by patients and families as an inappropriate setting primarily because of its limitations in providing these aspects of care.

Limitations This integrative review synthesises the current international evidence base regarding patient and family experiences of palliative care in an acute hospital setting. Electronic search, retrieval and review strategies were used; however, the search is subject to some limitations. Databases were limited to English, and due to resource limitations, a search of the ‘grey literature’ was not carried out. As a result, some studies may have been missed.

Conclusion Despite the fact that people express a preference to be cared for and die at home or in a hospice, hospitals continue to play a significant role in providing palliative care. In many countries, the majority of people still die in a hospital setting and many will be admitted to hospital during the last year of their life. This review has identified that, largely as a result of study design, our knowledge of patient and family experiences of palliative care in an acute hospital remains limited to discrete aspects of care. Further research is required to explore the total patient and family experiences taking into account all aspects of care including the potential benefits of hospital admissions in the last year of life. Declaration of conflicting interests The authors declare that there is no conflict of interest.

Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

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