Hospice or home? Expectations of end‐of‐life care among white and Chinese older people in the UK

This paper presents findings from two linked studies of white (n = 77) and Chinese (n = 92) older adults living in the UK, which sought their views about end-of-life care. We focus particularly on experiences and expectations in relation to the provision of end-of-life care at home and in hospices. White elders perceived hospices in idealised terms which resonate with a 'revivalist' discourse of the 'good death'. In marked comparison, for those Chinese elders who had heard of them, hospices were regarded as repositories of 'inauspicious' care in which opportunities for achieving an appropriate or good death were limited. They instead expressed preference for the medicalised environment of the hospital. Among both groups these different preferences for instututional death seemed to be related to shared concerns about the demands on the family that may flow from having to manage pain, suffering and the dying body within the domestic space. These concerns, which appeared to be based on largely practical considerations among the white elders, were expressed by Chinese elders as beliefs about 'contamination' of the domestic home (and, by implication, of the family) by the dying and dead body.     

Training and supporting GPs in providing palliative care to a Vietnamese-Australian community

The mooted increasing role for general practitioners to provide palliative care for an aging Australian population has raised the need for improved training and support for GPs to provide 'healthcare for dying people that maximizes quality of life and assists families and carers during and after death'. In order to address this need, the Commonwealth Department of Health and Ageing commissioned a study into the education, training and support needs of GPs in palliative care. This article reports one element of this national study: the needs of GPs who provide palliative care to a Vietnamese-Australian community in Sydney, New South Wales.     

Dying peacefully: considering good death and bad death in Kwahu-Tafo, Ghana

People in Kwahu-Tafo, a rural town in Southern Ghana, regard a peaceful death as a 'good death'. 'Peaceful' refers to the dying person having finished all business and made peace with others before his/her death and implies being at peace with his/her own death. It further refers to the manner of dying: not by violence, an accident or a fearsome disease, not by foul means and without much pain. A good and peaceful death comes 'naturally' after a long and well-spent life. Such a death preferably takes place at home, which is the epitome of peacefulness, surrounded by children and grandchildren. Finally, a good death is a death which is accepted by the relatives. This 'definition' of good death--'bad death' is its opposite--does not imply, however, that it is a fixed category. The quality of one's death is liable to social and political manoeuvre and, therefore, inherently ambiguous. The good death of a very old and successful person can be decried by the younger generation as the death of a witch who managed to live long at the expense of young people who died prematurely. The article is based on anthropological fieldwork carried out intermittently from 1971 to the present day.     

Planning for the end of life: the views of older people about advance care statements

Advance statements about medical care have been heralded by some as a solution to the problem of end of life decision making for people not able to participate in discussions about their care. Since death is now most likely to occur at the end of a long life, it is important to understand the views and values which older people express in relation to these. This paper reports on a study which used focus groups to explore older people's views about advance statements and the role these might play in end of life care decisions. Participants were 32 older people or their representatives who belonged to six diverse community groups in Sheffield, UK. Advance statements were understood primarily in terms of their potential to aid personal integrity and to help the families of older people by reducing the perceived 'burden' of their decision making. However, concerns were expressed about the perceived link between advance care statements and euthanasia, their future applicability, and the possibility that preferences for care may change. Participants also reported worries and difficulties related to thinking about and discussing death and dying. Trust between doctor and patient, built up over time, was perceived to be important in creating an environment in which the communication necessary to underpin advance care planning could take place. Lastly, participants did not perceive that during dying they would be ready necessarily to adhere to an advance statement and 'disengage' from their lives. We conclude that, rather than emphasising the completion of advance statements, it may be preferable to conceptualise advance care planning as a process of discussion and review between clinicians, patients and families.     

A survey of end-of-life care in care homes: issues of definition and practice

Care homes throughout the UK provide long-term care for frail older people. Whilst care homes are a home for life, many of the older people living in this setting also die there. There is increased interest in improving the care that older people receive in care homes towards the end of life. One way to achieve this has been through links with specialist palliative care services. The knowledge held in care homes by staff, residents and their family carers has yet to be fully integrated into this work. Consequently, a postal survey of care home managers in one English county was undertaken to examine the characteristics of end-of-life care for older people in these care homes. We sought to establish the managers' understanding of end-of-life care; the extent to which dying and death is present in this setting; the attributes of the resident population living in these care homes; and the availability of resources to support the provision of end-of-life care in this setting. The survey identified that managers held diverse understandings regarding the meaning of end-of-life care. The features of the residents' conditions and the dying that they experience requires a different way to conceptualise end-of-life care. A longer-term perspective is offered here that encompasses the whole period of a person's residence in a care home.     

Good enough death: autonomy and choice in Australian palliative care

This paper draws upon Australian fieldwork to trace the changing notions of a good death held by hospice and palliative care practitioners. Palliative care practitioners search for an ideology to inform their practice within the context of a complex society for which there is no one good death. Social demographics, the multicultural nature of society and institutional constraints frame the experience of dying in complex ways, while contemporary social responses to dying reflect the uncertainties held by many Australians. Despite the fragmentation evident within contemporary Australian society, the hospice movement in Australia and in other Western contexts has sought to reintroduce a ritual for dying. The good death ideology of the original hospice movement proposed a manner of dying in which open communication and acceptance of death were actively encouraged. The hospice model of a good death, however, has become increasingly inappropriate in the current climate of patient autonomy and consumer choice. The practice of palliative care, a holistic form of care for dying people, which follows the individualistic ethic of choice, has emerged from and replaced the original hospice movement. Consequently, the good death of the original hospice movement has been abandoned in favour of a philosophy of a 'good enough' death. However, what may appear a compromise informed by ethical practice masks a return to routine medical practices and a hierarchy of care which prioritises the physical management of symptoms. It appears that while palliative care practitioners may often fail in their facilitation of a good death for their patients, they can be proactive in alleviating their patients' pain and physical discomfort.     

Informal care and terminal illness

This paper is based on a study of the care and services received by people in the year before death in one Yorkshire health authority. In the spring of 1997 in-depth interviews were carried out with bereaved relatives and carers of a weighted sample of 33 people who had died in one Yorkshire health authority in the previous 18 months. Deaths where people were judged to have needed no input from palliative care services were excluded. The sample covers a range of different caring arrangements, experiences of caring for someone who is dying, support from formal services, place and manner of death. All those interviewed were providing some form of informal care or support to those who died, in some cases 24-h care. The interviews provided a valuable insight into ordinary people's experiences of death and of caring for someone who is dying. Most importantly for the purposes of this study, they gave insight into their experiences of services to support both the dying person and themselves in their caring role. The paper discusses the ways in which care of the terminally ill is distinctive. It explores the role of informal care in relation to the wider character and history of the local community, in particular the significance of its declining industrial base, and secondly, the availability of appropriate services to support those caring for the terminally ill. Finally, it makes recommendations about service planning and delivery which challenge the current framework for providing services to the terminally ill.     

A community‐of‐care: the integration of a palliative approach within residential aged care facilities in Australia

In developed countries, residential aged care facilities (RACFs) are increasingly becoming the place of care and site of death for older people with complex chronic illnesses. Consequently, it is becoming ever more relevant for these facilities to provide appropriate complex, as well as end‐of‐life care for this growing group of people. Evidence‐based guidelines for providing a ‘palliative approach’ were developed and introduced in Australia in 2004, with the emphasis on improving symptom control earlier in the disease trajectory. The aim of the study reported here was to explore the extent to which a palliative approach was being used in the organisation and provision of care for older people with complex needs living in mixed‐level (a combination of low‐ and high‐level care) RACFs. This paper primarily reports on the qualitative findings. Two residential aged care organisations, one in rural New South Wales and the other in Sydney, Australia, participated. Data were collected over a 9‐month period from May until December 2008. Residents, family members and aged care staff were interviewed. Thematic analysis of participant interviews shows that while the various elements of a palliative approach are incorporated into the care of high‐level care residents, the discourse itself is not used. In this paper, we argue for a new conceptualisation of care for people in mixed‐level care facilities: a community‐of‐care, in which a palliative approach is one of several components of the care provided. The findings illuminate aged care staff experiences of providing care to high‐level care residents. They also provide valuable insights into high‐level care residents’ perceptions of their health, care provided and the way in which they foresee their care being provided in future. These findings will be important for informing clinical practice, research and policy in these settings.     

Why are newly qualified doctors unprepared to care for patients at the end of life?

Medical Education 2011: 45 : 389–399 Context Death and dying occur in almost all areas of medicine; it is essential to equip doctors with the knowledge, skills and attitudes they need to care for patients at the end of life. Little is known about what doctors learn about end‐of‐life care while at medical school and how they learn to care for dying patients in their first year as doctors. Methods We carried out a qualitative study using face‐to‐face interviews with a purposive sample of 21 newly qualified doctors who trained in different medical schools. Results Data were analysed using a constant comparative approach. Two main groups of themes emerged. The first pertained to medical school experiences of end‐of‐life care, including: lack of exposure; a culture of ‘clerking and signs’; being kept and keeping away from dying patients; lack of examinations; variable experiences, and theoretical awareness. The second group of themes pertained to the experiences of recently qualified doctors and included: realising that patients really do die; learning by doing; the role of seniors; death and dying within the hospital culture; the role of nursing staff, and the role of the palliative care team. Conclusions Undergraduate medical education is currently failing to prepare junior doctors for their role in caring for dying patients by omitting to provide meaningful contact with these patients during medical school. This lack of exposure prevents trainee doctors from realising their own learning needs, which only become evident when they step onto the wards as doctors and are expected to care for these patients. Newly qualified doctors perceive that they receive little formal teaching about palliative or end‐of‐life care in their new role and the culture within the hospital setting does not encourage learning about this subject. They also report that they learn from ‘trial and error’ while ‘doing the job’, but that their skills and knowledge are limited and they therefore seek advice from those outside their usual medical team, mainly from nursing staff and members of palliative care teams.     

Is occupation missing from occupational therapy in palliative care?

Background/aim: The role of occupational therapists in palliative care is largely undocumented in Western Australia (WA). Little is known about the services occupational therapists provide or the needs of people who are dying and their carers in relation to these services. The aims of this study were as follows. First, to determine the number of occupational therapists employed and the range of services they provide in palliative care in WA. Second, with particular reference to self care, leisure, productive roles and occupations, to explore the daily experiences of people who were dying as well as their primary carers to determine the services that might be offered by occupational therapy to this population. Methods: Semi‐structured interviews were used to gather information from carers (n = 10 metro, n = 4 rural) and occupational therapists (n = 13 metro, n = 5 rural). Data were analysed qualitatively using grounded theory to develop categories. Themes were defined using the constant comparison method. Results: Four themes emerged that impacted people who were dying and their carers. These were; ongoing disengagement from usual activities with resultant occupational deprivation; disempowerment of both people who are dying and their carers within palliative care services; ‘occupation’ not being addressed adequately in palliative care and occupational therapists experience frustration with limited opportunities to contribute to the care of people who are dying. Conclusions: This paper highlights gaps in service provision in WA to people who are dying and their carers. It provides direction for occupational therapists to offer an occupation‐focussed approach to the care of this vulnerable group.     

Dying in long-term care facilities: support needs of other residents, relatives, and staff

This paper explores the support needs of residents, relatives, and care staff when someone dies in a facility for older people. The authors draw on the qualitative findings from an English study, which investigated the case for applying the principles and practices of palliative care to people dying in these settings. Relatives need practical as well as emotional support, which is often not met adequately by nursing home staff. Managers varied in the extent to which they recognized other residents' emotional needs or supported relatives. Care staff members acknowledged needing practical and emotional support, but management was often unable to deliver it. Lack of training in recognizing and addressing needs in addition to financial and staffing constraints were factors that prevented managers from providing support for staff, residents, and relatives.     

Ancient euthanasia: 'good death' and the doctor in the graeco-Roman world

This article maps the concept of 'good death' (euthanasia) in the ancient world and explores the marginal role of the doctor at a 'good dying'. His assistance was not needed when the Homeric warrior died as a hero and was expected to accept death with resignation. Later the city-state regarded as heroes the men fallen for the cause of the community, honouring these model citizens as those who died well. In the more individualistic age of Hellenism and the Roman Empire, a death in luxury or without suffering could be styled euthanasia. The doctor had neither a place in those acts of dying nor in cases of natural death. He shunned death as a failure of his art. Sometimes a doctor was called in to assist in voluntary death, a role that was not forbidden by the Hippocratic oath. An appeal to this oath by opponents of euthanasia in the modern sense of the word therefore is mistaken.     

Good deaths,bad deaths: Older people's assessments of the risks and benefits of morphine and terminal sedation in end-of-life care

Little is known about end-of-life preferences or how risks are assessed surrounding doctor-patient or doctor-family relationships during end-of-life decision making. Older people are often excluded from end-of-life care research although there is some evidence that most would express preferences for 'comfort care' rather than life-sustaining interventions if facing terminal illness. This paper draws on data from focus group discussions with older people to illuminate how interpersonal and bodily aspects of the dying process are associated with shifting evaluations of two core techniques of palliative care: morphine administration and terminal sedation. Participants understood an idealised death to be that in which morphine administration and terminal sedation serve to provide dying people with an easy, comfortable and quiet death. In this, bodily symptoms of distress are discreetly controlled and death occurs at an appropriate time and place. At the same time the role of medicine in procuring an idealised death is linked to profound concerns about new risks that flow from the intermarriage of medical science with the basic human obligation of providing compassionate care to those who are dying.     

On reflection: doctors learning to care for people who are dying

Humane care is an essential component of the doctor's role at the end of life. Over the last 20 years, there has been a steady global increase in the extent and variety of medical teaching about the care of people who are dying. In some countries, palliative medicine is now recognised as a discrete medical specialty. Rightly, much emphasis has been placed on symptom management, communication skills and ethical issues. But rarely does the concept of care, or how doctors learn to care, emerge in the medical literature. The concept of "care" is usually defined as a professional behaviour: attending to a patient's needs. Yet, the concept of care also requires a professional commitment on a more holistic level. To care is to be receptive to and responsible for others. This is care motivated by true empathy: a concern for the patient's well-being that comes from a sensitive identification with the patient's situation. This paper reports some of the findings from an interpretive phenomenological study involving 10 doctors and their experiences of learning to care for people who were dying. The doctors came from differing medical disciplines and had varying levels of experience. During the interviews the doctors retrospectively identified "turning points" at which they first perceived some notion of what it means to care for someone who is dying. The doctors often used poignant language when recollecting the strong feelings associated with these critical incidents. They felt that their training had been inadequate in preparing them for such care. The article asks whether their medical education had adequately prepared these doctors for this key element of their work. It recommends ways in which practitioners may be better prepared to care for people who are dying.     

Changing the culture of dying. A new awakening of spirituality in America heightens sensitivity to needs of dying persons

Americans increasingly believe there are material solutions to all problems. Though we once accepted death as a part of life, we now think that--with enough technology--death can be controlled and postponed. Throughout this century, we have moved the dying process from the home to institutional settings. But institutions have a tendency to push all care to its logical end, which leads to alienation, fragmentation, and diminishment. Alienation is the result of the isolation and regimentation found in acute and skilled nursing care facilities. When care givers are indifferent to patients' pain, or do not know how to control it, they further impair the ability of dying persons to interact with others. Care for the dying person, "system by system, organ by organ," as is typical in institutional settings, fragments the dying process into a series of medical events. And, finally, institutionalized care often results in a diminishment of respect by care givers, who may come to view the dying person more as an object of academic interest than as a human whose spiritual needs may transcend physical ones. Such behavior has begun to show us the human costs of denying death and is contributing to a reawakening of spirituality in this country. The devastating effects of alienation, fragmentation, and diminishment can be ameliorated by a heightened sensitivity to the dying person's spiritual needs. With the proper supports, the dying process can be relocated from institutions to the home. Specialized training can educate healthcare professionals about palliative care and human needs at the end of life. We can rehumanize dying persons by first rehumanizing their care givers, specifically addressing the issues of stress and burnout on the job. Ultimately, the way we give care at the end of life reflects broader issues in U.S. culture. Only when communitarian values replace individualistic ones will resources be reallocated in a manner that best serves the most people. Only then will physicians, nurses, and other care givers receive rewards for supporting the dying person when tests and treatment are no longer needed.     

Dying cases in emergency places: caring for the dying in emergency departments

In an ageing society, like the UK, where long-term illness dominates healthcare, there has been a change in the way that the end-of-life is approached and experienced. Advancing technology, inadequate knowledge and inconsistency in palliative care services have complicated the ability to recognise imminent dying and many people access emergency services at the end-of-life. Drawing on ethnographic research exploring end-of-life care in one large Emergency Department (ED), the authors examine the spaces of dying and death, which are created in a place designed to save life, and not necessarily to provide supportive and palliative care. Despite the high need for attention in an emergency crisis, this study shows that the approach taken to care for someone at the end-of-life, and consequently the space in which they are cared for, often falls short of the expectations of the dying patient and their relatives. It is argued that the dying body is seen as dirty and polluted in the sterile, controlled, clinical environment and is therefore 'matter out of place'. Attempts are made to conceal or remove the dying patient, the bereaved relatives and the deceased body protecting the natural order of the ED. Consequently, the individual supportive and palliative care needs of the dying are often overlooked. This paper highlights the needs of patients as death nears in the ED and argues that the critical decisions made in the ED have a significant impact on the quality of care experienced by patients, who spend the last few hours of their life there.     

Relieving suffering at the end of life: practitioners' perspectives on palliative sedation from three European countries

This paper reports findings from visits to palliative care settings and research units in the UK, Belgium and the Netherlands. The aim was to learn about clinicians' (both nurses and doctors) and academic researchers' understandings and experiences of palliative sedation for managing suffering at the end of life, and their views regarding its clinical, ethical and social implications. The project was linked to two larger studies of technologies used in palliative care. Eleven doctors, 14 nurses and 10 researchers took part in informal interviews. Relevant reports and papers from the academic, clinical and popular press were also collected from the three countries. The study took place in a context in which attention has been drawn towards palliative sedation by the legalisation of euthanasia in the Netherlands and Belgium, and by the re-examination of the legal position on assisted dying in the UK. In this context, palliative sedation has been posited by some as an alternative path of action. We report respondents' views under four headings: understanding and responding to suffering; the relationship between palliative sedation and euthanasia; palliative sedation and artificial hydration; and risks and uncertainties in the clinician-patient/family relationship. We conclude that the three countries can learn from one another about the difficult issues involved in giving compassionate care to those who are suffering immediately before death. Future research should be directed at enabling dialogue between countries: this has already been shown to open the door to the development of improved palliative care and to enhance respect for the different values and histories in each.     

The ambiguous dying syndrome

More than one-half of the 2.4 million deaths that will occur in the United States in 2004 will be immediately preceded by a time in which the likelihood of dying can best be described as "ambiguous." Many people die without ever being considered "dying" or "at the end of life." These people may miss out on the opportunity to close important relationships and make financial and legal arrangements that can benefit themselves and their survivors. They may inadvertently forgo palliative care that is available to comfort them physically, emotionally, and spiritually. This article calls for a broader conceptualization of the end of life to include not just the time when death is foreseeable, but also the time when people are at a greatly increased risk of death, although the timing is highly uncertain. Social workers have much to offer people affected by the "ambiguous dying syndrome."     

Feeling old versus being old: views of troubled aging.

This paper describes the results of an ethnographic study which explored the experiences of aging constructed by five older people, their adult children and a team of health professionals involved in evaluating their health status. Older participants made a clear distinction between being old and feeling old whereas their children did not. None of the five older people, who ranged in age from 69 to 86, identified themselves as old although each of them identified specific and transient episodes of feeling old. Their children, on the other hand, identified the older people as being old when they perceived them as having lost a characteristic which had been a central factor in the children's experiences of them as parents. Contrary to the older people's experience of feeling old as a temporary phenomenon, the children's identification of their parents as old included the understanding that their parents were in a process of inevitable and irreversible decline for which something needed to be done. In an effort to help, the children referred their parents to a geriatric assessment clinic to identify the cause of their problems and to recommend solutions for resolving them. The involvement of the assessment clinic generated yet another construction of the older people's problems. The study explores the impact which these sometimes conflicting views had in unwittingly precipitating an additional burden of trouble for both older people and children. Conversely, the study also demonstrates the power of the participant families' definitions of themselves and their situations to withstand the weight of opposing constructions generated by the clinic staff. Finally, the phenomenon of troubled aging is seen as a feature of the children's experience of their parents' aging rather than as a central aspect of the older people's experience.     

Measuring satisfaction with social care amongst older service users: issues from the literature

Issues of quality and accountability in social care for older people are of increasing importance. A key factor in determining quality is the extent to which older people themselves are satisfied with both the assessment of their needs and the services provided. The 1997 White Paper, Modernising Social Services, stated that local authorities will need to establish authority-wide objectives and performance measures to improve the quality and efficiency of services. In measuring quality, the White Paper stipulated that social service departments would need to design and administer satisfaction surveys as one means of capturing user and carer perceptions and experiences of services. This paper attempts to highlight some of the main issues to be considered when designing and conducting such surveys with older users of community care services. Through a review of the British and North American literature on older people's satisfaction with services, current approaches to measuring satisfaction are outlined and the relationship between the characteristics and circumstances of older people and their responses to satisfaction questions is examined. The paper concludes by offering some solutions to overcoming current problems by drawing conclusions about quality from survey findings, so that older people's opinions about the services they receive can begin to be assessed in a more meaningful way.