Introduction
A range of complex issues emerges from an examination of the end-of-life in old age. The particular focus of this article is on cultural concerns at the end-of-life in old age (where culture is understood as a system of shared values and practices) and the methods used in their study and explication. This is a challenging research area, not least because of the vulnerability of the research participants, and it is timely to review the associated methodological and ethical concerns. The focus on culture is also timely. The ageing of migrant ethnic minority populations (Hayslip and Peveto Reference Hayslip and Peveto2005) and the global spread of medical and health-care practices makes this a crucially important area of practice and there is an urgent need to build the evidence base. In this article, we consider first some of the key issues from the literature about the cultural contexts of death and dying in old age. This is followed by a systematic review of empirical research that is either cross-cultural or which led to important findings about the cultural contexts. The methodological and ethical issues that arise are then discussed.
Cultural contexts of death and dying in old age
Walter (Reference Walter2003) pointed out that because ideas of what constitutes a good death are dependent on social and cultural norms, it follows that we should expect considerable variation in multi-cultural societies. He identified three key factors: the extent of secularisation, the extent of individualism, and how long the typical death takes. Leichtentritt and Rettig, for example, pointed out that the strict norms of Jewish culture prescribe ‘one way to die, one way to be buried and one way to mourn the loss of a close family member’ (2001: 86; see alsoGamliel Reference Gamliel2008; Wink and Scott Reference Wink and Scott2005). In contrast, comparatively secular societies embrace a multiplicity of ideas about ways to die or to mourn, and tensions are evident between religious and secular positions in the framing of laws and policies concerning the end-of-life (Williams Reference Williams1990). Secularisation also coincides with the growing importance of medicine and its partial substitution for religious understanding and customs. Timmermans (Reference Timmermans2005) pointed to the dominance of the medical professions in deaths in Western societies and argued that their role now encompasses that of ‘death brokering’, in which deaths are made culturally manageable and understandable. In this review, it is argued that the extended duration of the dying trajectory coupled with growing individualism have profound implications for older people.
Cross-cultural comparisons are particularly useful for explaining the meanings that people attach to the idea of a good death, but different cultural norms and values concerning death and dying are not always easily distinguished. Seale and van der Geest (Reference Seale and van der Geest2004) commented on the extent to which otherwise diverse cultures have common views about ‘a good death’, with some conceptions being near universal, for example that it comes ‘after a long and successful life, at home, without violence and pain, with the dying person being at peace with his environment and having at least some control over events’ (2004: 885). Seale and van der Geest also commented on the significance of different views about good and bad deaths within cultures along the lines of religious beliefs, age cohort, economic status, professional status and political interests. Importantly, ideas about what constitutes a good death do not always translate neatly into ideas about what constitutes good end-of-life care. For example, the idea of ‘openness’ about a person's dying status – generally considered in the West to be a prerequisite of good end-of-life care – is known to be inappropriate in other contexts.
The development of palliative care is a relatively low priority in countries where the prevention of premature deaths is still a priority. Particular issues arise in countries where HIV is a major cause of death at all ages, or where older people have lost sources of support because of migration (King and Vullnetari Reference King and Vullnetari2006; Williams and Tumwekwase Reference Williams and Tumwekwase2001). Spence, Merriman and Binagwaho (Reference Spence, Merriman and Binagwaho2004) pointed out that in many African countries, health professionals are faced with the dilemma of having to choose between saving lives and easing the suffering of the dying, but also argued that major improvements can be made in pain relief at very little cost, and could be applied in palliative care.
It is also important to bear in mind the dynamic nature of cultures and the ways in which cultural norms and values can be changed or modified as a consequence of exposure to new knowledge and practices. Mani (Reference Mani2006), for example, identified difficulties in end-of-life care in India, including high levels of unmet need in public hospitals, unaffordable medical expenses, and the lack of training in palliative care. A complex and archaic legal code that is unclear on the law concerning the withdrawal of treatment at the end-of-life exacerbates an already difficult situation for dying people and their families (Brijnath Reference Brijnath2008). Shanmugasundaram, Chapman and O'Connor (Reference Shanmugasundaram, Chapman and O'Connor2006) argued that Western models of palliative care, which have been adopted increasingly over the past ten years in India, are not always appropriate and that more successful models are evident where community-level initiatives draw on traditional healing practices. Indeed, they predicted that in the future the West will learn much from such approaches.
Gu et al. (Reference Gu, Liu, Vlosky and Yi2007) analysed changes in the place of death of older people in China, with the aim of drawing more general conclusions about the relationship between the place of death and the level of a country's socio-economic development. They concluded that there are three stages in the evolution of place of death. During the first, because of a lack of alternatives and limited medical care, most people die at home. At the second stage, as medical techniques improve and health-care services become more accessible, hope of survival is raised and more people die in hospitals. At the third stage, there is more interest in the quality of care at the end-of-life, and palliative and hospice care is preferred to that offered in hospitals. In broad terms, this typology is useful, although the place of death does not provide the whole picture concerning the quality of a death, and other cultural factors need to be taken into account. Without doubt, hospice and palliative care is generally regarded as a positive alternative to the medicalised death, in which the dying person is reduced to a set of physical symptoms and their social, psychological and spiritual needs are overlooked. The chief characteristics of a good death according to the palliative care model can be summarised as follows:
• Attention to the unique physical, psychological, social and spiritual needs of the individual who is dying.
• Control of pain and other distressing symptoms.
• Death at home, accompanied by family and friends.
• Open awareness of the impending death for the dying person, their family, and those providing care and treatment.
• Choice and control by the dying patient over treatment decisions.
• Support and comfort for the bereaved both prior and subsequent to the death (Gott et al. Reference Gott, Small, Barnes, Payne and Seamark2008).
This model has become widely regarded as desirable best practice that should be promoted globally, but questions have also been raised about its cultural appropriateness and for the notion of imposing a single ‘script’ about how people should die (Gott et al. Reference Gott, Small, Barnes, Payne and Seamark2008). There are particular questions in relation to age. The palliative care approach was developed in cancer care predominantly for middle-aged people and cannot simply be transferred to the context of, for example, coronary or cerebrovascular diseases from which large numbers of older people die. The complexity of many older people's dying trajectories means that it is often difficult to determine whether they are living with a disease or dying from it. Bern-Klug (Reference Bern-Klug2004) referred to the ‘ambiguous dying syndrome’, which leaves many older people unable to access the kind of emotional and spiritual comfort and care that might be available if their dying status were more clearly established. The length and complexity of their dying trajectories means that older people's need for care and support at the end-of-life is not easily predictable (Dwyer, Nordenfelt and Ternestedt Reference Dwyer, Nordfeldt and Ternestedt2008; Lloyd Reference Lloyd2004).
Whilst there is evidence to support the view that hospice care is a popular choice at the end-of-life, inequalities in access are evident (including some related to age and ethnicity) (Grande, Addington-Hall and Todd Reference Grande, Addington-Hall and Todd1998; McGrath Reference McGrath2000). In Western countries, older people – particularly widowed women – are increasingly likely to die in a nursing home (Flory et al. Reference Flory, Young-Xu, Gurol, Levinsky, Ash and Emanuel2004) and there is increasing emphasis on enabling older people to die at home if that is their wish (Jeppsson-Grassman and Whitaker Reference Jeppsson-Grassman and Whitaker2007). Whilst a death at home is potentially good, especially if this is an older person's preference, it might put older people at risk of isolation or place unexpected pressure on families unless they are supported by health and social care services.
The literature review
The key questions that we wished to address through the literature review were:
• In different cultural contexts, what factors are understood to determine whether or not a death in old age is ‘good’?
• What is the impact of social and cultural change on how a good death in old age is understood?
• What are the strengths and weaknesses of different research methods used to research death and dying in later life?
• How have ethical challenges, inherent in this field of research, been addressed?
• What are the implications of these findings for gerontological knowledge?
Cross-cultural research can highlight differences in life expectancy and patterns of mortality but this was not a part of this review. However, such differences and inequalities have an impact on what constitutes old age in different parts of the world, and being mindful of this we did not impose a strict definition of old age. In almost all the studies participants were aged over 60 years.
The search procedure
A search of the online databases Medline, Embase, Cinahl, ASSIA IBSS, AGEINFO, Web of Science and Web of Knowledge was conducted using the following keywords: death, dying, good death, end-of-life, end of life, mortality, ageing, aging, old*, elder*, culture, ethnicity, minor* and religion. These keywords were combined in different ways to maximise our ability to obtain all available evidence (the asterisks indicate any character; the full search strategy is available from the corresponding author). Relevant specialist gerontology, death and dying and cross-cultural journals were also hand-searched. The websites of the World Health Organization and the Palliative Care Observatory at the University of Lancaster, United Kingdom (UK), were searched for relevant publications. A search for social gerontology books published beyond the United States of America (USA), the UK and Europe was also conducted. We excluded non-English-language articles; those concerned with research on non-human subjects; articles where age was not a primary focus; studies of population trends and demographic factors; and strongly biomedical articles (concerned with treatment for a particular disease or condition).
The number and types of identified publications
The initial searches of the databases produced more than 400 papers from over 100 peer-reviewed journals. More than half of the journals were medical or nursing, including those specialising in health-care practice with older people. There were 15 social gerontology and applied gerontology journals and those from diverse other disciplines, including death studies, sociology, medical ethics, social work, psychology and anthropology. Over 50 per cent of the papers were from the USA, almost 25 per cent from the UK and 13 per cent from continental Europe (predominantly the Nordic countries and The Netherlands). There were also 25 papers from Australia, 22 from Canada, ten from Japan and six from Hong Kong. Those from the rest of the world included Ghana, India, Israel, Mexico, Singapore, Taiwan and New Zealand, although it should be borne in mind that some papers published in the USA or the UK reported research that had been conducted in other parts of the world (e.g. Orpett-Long Reference Orpett-Long2004; van der Geest Reference Van der Geest2004). The first stage of the analysis was to group the articles into four categories:
1. Empirical research with older people and families.
2. Empirical research with professional practitioners.
3. Articles on research methods.
4. Discussion articles, including policy and ethics related to end-of-life care.
There were slightly more non-empirical than empirical studies. Of the non-empirical papers, more than half were discussions of health-care policies and practices, many of them focused on the ethics of decision-making at the end-of-life and on service quality standards. There were also secondary analyses of survey data and literature. The empirical research was predominantly qualitative, and the participants included older people, families, widows, unpaid carers, nursing staff and medical students. There were also several reports of empirical quantitative studies (around 10% of all papers), including those on mortality predictors and place of death.
At an early stage, we did not impose strict exclusion criteria but for several reasons subsequently modified the search strategy. The preponderance of literature on the medical care of the dying presented a challenge, because the cultural factors that impinge on health care at the end of life were not irrelevant but the plethora of articles from North America and Europe on decisions and choices over end-of-life treatment, advance directives and physician-assisted dying prompted reconsideration. It was decided to confine our search to articles on empirical research that had a clear cultural focus. At the second stage, we selected those articles that aimed to produce a cross-cultural comparison or in which the cultural context of the research was discussed. After initial reading of abstracts, 32 articles were retained and categorised into two groups:
1. Empirical research with older people and/or their families and/or practitioners with a specific cross-cultural focus, and
2. Empirical research with older people and their families where the cultural context was significant (see Tables 1 and 2).
We also examined papers that provided useful contextual material, including non-empirical papers in which ethnicity and culture were significant to the discussion and papers that had a particular methodological or research ethics focus. These are not included in the tables but informed our overall analysis.
Table 1. Cross-cultural studies in the review
Table 2. Studies with a strong cultural focus
Methodological and ethical findings
The recency of this field of research is reflected in the exploratory nature of many of the reviewed studies and the frequent calls by the researchers for further work. We identified a bias towards end-of-life care and treatment decisions, rather than on older people's experiences of the end-of-life more generally. This perhaps reflects methodological difficulties in this area of research, especially those related to the recruitment of research participants. We also identified tendencies to regard the Western approach to end-of-life treatment decisions as the ‘default position’ and that health-care practice should aim to encourage older people to comply with a Western approach. Across the entire spectrum of the reviewed studies, however, the clear message was that a better understanding is needed of ethnic and cultural differences in beliefs and practices at the end-of-life in old age.
Strengths and limitations of qualitative and quantitative approaches
A number of researchers have called for more large quantitative studies in this area to produce generalisable findings (Bolmsjo Reference Bolmsjo2008; George Reference George2002; Kwak and Haley Reference Kwak and Haley2005). Policy makers trust epidemiological data and it is argued that small, local studies do not have as much impact. Bolmsjo (Reference Bolmsjo2008) argued that the quality of palliative care research has been compromised by concerns about the vulnerability of the participants. Koffman and Higginson (Reference Koffman and Higginson2001) reflected that the recruitment of bereaved relatives in their study had to be done with sensitivity and was responsible for a low response rate. Small samples sometimes reflect particular conditions in geographical or political areas. Gelfand et al. (Reference Gelfand, Balcazar, Parzuchowski and Lenox2004) acknowledged such difficulties in their study of the use of hospices by Mexicans in the USA, and similar points were made by Bito et al. (Reference Bito, Matsamura, Kagawa Singer, Meredit, Fukuhara and Wenger2007) and Daaleman et al. (Reference Daaleman, Williams, Hamilton and Zimmerman2008).
On the other hand, qualitative studies should not be regarded as methodologically the ‘poor relation’. When coupled with well-informed and effective ethical strategies, they are entirely appropriate for this sphere of study and necessary for exploring older people's experiences of their worsening health, increased dependency on others, sense of dignity and fears about the future. The review also demonstrated that qualitative studies enhance understanding of culture and ethnicity. In-depth interviewing enabled Mehta (Reference Mehta1999), Orpett-Long (Reference Orpett-Long2004) and Seymour et al. (Reference Seymour, Payne, Chapman and Holloway2007) to identify subtle differences between individuals of single ethnic groups. A combination of qualitative and large quantitative studies can enhance the impact of both methodologies. Blackhall et al. (Reference Blackhall, Frank, Murohy, Michel, Palmer and Azen1999), for example, regarded the ethnographic data generated through a sub-sample of their survey as ‘indispensable’ in making sense of what were apparently contradictory opinions expressed in the larger study. The qualitative research conducted by Gott et al. (Reference Gott, Small, Barnes, Payne and Seamark2008) was specifically designed to add depth and breadth to the large quantitative study of older people with advanced heart disease.
Ethical approaches to the recruitment of participants
Not surprisingly, most of the studies did not gather data directly from older people who knew they were near the end-of-life. One exception, by Schroepfer (Reference Schroepfer2006), interviewed people who had a terminal diagnosis, so was able to use tried and tested methods. Andersson, Hallberg and Edberg (Reference Andersson, Hallberg and Edberg2008) first conducted interviews with people who had a life-threatening disease and/or who received palliative care, and then retrospectively analysed the data for those who died up to six months after the interview. This novel approach to obtaining data from those who were dying but not aware that this was so at the time of the interview circumvented some ethical difficulties. Although a disadvantage was that it reduced the sample to 17 of the 28 people interviewed, the approach merits wider and larger-scale adoption.
Some studies collected information in particular locations, for example hospitals or nursing homes, which would indicate that the participants were in the last phase of life if not close to death (Kwok, Twinn and Yan Reference Kwok, Twinn and Yan2007; Pleschberger Reference Pleschberger2007; Orpett-Long Reference Orpett-Long2004; Ott Reference Ott2008). In some cases, this was coupled with selecting participants with particular health conditions (Andersson, Hallberg and Edberg Reference Andersson, Hallberg and Edberg2008; Becker Reference Becker2002; Fried Reference Fried2003; Gott et al. Reference Gott, Small, Barnes, Payne and Seamark2008). The participants in the study by Gott et al. had advanced heart disease and a similar prognosis to those with breast or prostate cancer but not a terminal diagnosis. Some cross-cultural studies have used focus groups, questionnaires and interviews with relatively healthy older participants to explore attitudes and opinions (Bito et al. Reference Bito, Matsamura, Kagawa Singer, Meredit, Fukuhara and Wenger2007; Blackhall et al. Reference Blackhall, Frank, Murohy, Michel, Palmer and Azen1999; Bowman and Singer Reference Bowman and Singer2001; Depaola et al. Reference Depaola, Griffin, Young and Neimeyer2003; Gelfand et al. Reference Gelfand, Balcazar, Parzuchowski and Lenox2004; Johnson, Kuchibhatla and Tulsky Reference Johnson, Kuchibhatla and Tulsky2008; Matsui, Braun and Karel Reference Matsui, Braun and Karel2008; Seymour et al. Reference Seymour, Gott, Bellamy, Ahmedzai and Clark2004; Shrank et al. Reference Shrank, Kutner, Richardson, Mularski, Fischer and Kagawa-Singer2005). Focus groups are widely used in exploratory research into attitudes and opinions and their value was amply demonstrated in the evidence of how attitudes change in the course of debate and discussion. The focus group study by Bito et al. highlighted the effect of acculturation on attitudes.
Focus groups generally require participants to be physically and mentally capable of participation. The study by Seymour et al. (Reference Seymour, Gott, Bellamy, Ahmedzai and Clark2004) was an exception, since a number of their participants were frail and very old – it demonstrated that if sufficient resources are available and a good ethical strategy is developed, people who might otherwise be regarded as unable to participate can be included. Koffman and Higginson (Reference Koffman and Higginson2001), Klinkenberg et al. (Reference Klinkenberg, Willems, Onwuteaka Philipsen, Deeg and van der Wal2004), Kwok, Twinn and Yan (Reference Kwok, Twinn and Yan2007) and Daaleman et al. (Reference Daaleman, Williams, Hamilton and Zimmerman2008) used proxy respondents, mostly bereaved relatives, and adopted a retrospective design, which was seen to have limitations as well as strengths. McPherson and Addington-Hall (Reference McPherson and Addington-Hall2003) concluded that retrospective studies with bereaved relatives produce good evidence for use by service providers, but are less useful in producing evidence of the dying person's experience of pain.
Longitudinal research
The power of some of the smaller studies reviewed was increased by their extended duration and by numerous contacts between researchers and participants: namely Mehta (Reference Mehta1999), Becker (Reference Becker2002), Seymour et al. (Reference Seymour, Payne, Chapman and Holloway2007) and Payne et al. (Reference Payne, Seymour, Chapman and Holloway2008). Becker's ethnographic design, with its particular focus on experiences of migration and its impact on the experience of chronic illness, necessitated such a longitudinal design. Counts and Counts (Reference Counts and Counts2004) argued that long-term anthropological field work has the advantages of not only studying the processes of ageing and dying but also revealing how people revise their explanations of socially-traumatic experiences (such as death) – the effects of such experiences change over time. The anthropological studies by Orpett-Long (Reference Orpett-Long2004) and van der Geest (Reference Van der Geest2004) provided this kind of in-depth evidence from long-term immersion in the cultural settings that were observed.
Substantive findings
Cultural differences and similarities
Many of the studies reviewed supported Seale and van der Geest's (Reference Seale and van der Geest2004) point that what makes a death ‘good’ overlaps between cultures and differs within cultures. Van der Geest (Reference Van der Geest2004) argued that the meaning of a ‘peaceful death’ in Ghana has striking resemblances to ideas of a good death as understood more broadly. The dynamic nature of cultures was also demonstrated in the findings of the studies by Bito et al. (Reference Bito, Matsamura, Kagawa Singer, Meredit, Fukuhara and Wenger2007) and Matsui, Braun and Karel (Reference Matsui, Braun and Karel2008). Acculturation after migration affects people's attitudes about what is appropriate and desirable at the end-of-life, but attitudes need to be understood also in the context of available health care and other forms of support. Shrank et al. (Reference Shrank, Kutner, Richardson, Mularski, Fischer and Kagawa-Singer2005) found that ethnicity alone does not determine older people's preferences for communication about end-of-life care. Becker (Reference Becker2002) argued that the experience of migration was as important as the ethnic background of the participants. Taken together, it is evident that culture and ethnicity need to be understood in context, with the clear implication for practice that assumptions should not be made concerning end-of-life care and treatment preferences based on culture and ethnicity alone.
It is evident from a number of studies that the idea of a ‘good death’ (described by a number of researchers as the ‘revivalist script’) closely associated with Western culture needs to be reconsidered for its general applicability. There are age-related and cultural factors to consider. Shanmugasundaram, Chapman and O'Connor (Reference Shanmugasundaram, Chapman and O'Connor2006), Fried (Reference Fried2003), Gelfand et al. (Reference Gelfand, Balcazar, Parzuchowski and Lenox2004) and Johnson, Kuchibhatla and Tulsky (Reference Johnson, Kuchibhatla and Tulsky2008) argued that the onus is on palliative care providers to ensure that their services are culturally acceptable and appropriate, but there are questions about the extent to which Western-style palliative care can or should be modified. In the UK, Seymour et al. (Reference Seymour, Payne, Chapman and Holloway2007) found that Chinese participants were reluctant to use hospices because the association between hospices and death made them ‘inauspicious’; they preferred the idea of a hospital death. Gott et al. (Reference Gott, Small, Barnes, Payne and Seamark2008) found that the Western model of a good death is not straightforwardly applicable to older people even in a Western culture, and Winter and Parker (Reference Winter and Parker2007) noted that some older people were more likely to choose more aggressive therapies as their health declined.
These findings indicate contradictions within the Western model of a good death, where promoting patient autonomy in decision-making might produce the opposite of a non-technological death. Some studies identified differences by religious adherence and belief concerning a good death. Mehta (Reference Mehta1999) and Becker (Reference Becker2002) identified strong views about the rituals involved at the time of death amongst different religious and ethnic groups (cf. Chan and Yau Reference Chan and Yau2009). Winter and Parker (Reference Winter and Parker2007) found that stronger preferences for life-prolonging treatments were associated with both ethnicity and religiosity, but Orpett-Long (Reference Orpett-Long2004) found that ‘religious scripts’ for a good death associated with cultural background were compatible with other influences. Daaleman et al. (Reference Daaleman, Williams, Hamilton and Zimmerman2008) found that care home residents of all ethnic backgrounds valued the spiritual care that was provided by staff over that provided by visiting specialist clergy.
Communication concerning end-of-life care
A recurring theme in the studies, and the focus of many, concerned the timing and manner of communication with older people, especially concerning their preferences for end-of-life care. Seymour et al. (Reference Seymour, Payne, Chapman and Holloway2007) demonstrated differences between participants' opinions about Advance Directives in general and their perspectives on their own individual situation. Blackhall et al. (Reference Blackhall, Frank, Murohy, Michel, Palmer and Azen1999), Shrank et al. (Reference Shrank, Kutner, Richardson, Mularski, Fischer and Kagawa-Singer2005) and Johnson, Kuchibhatla and Tulsky (Reference Johnson, Kuchibhatla and Tulsky2008) examined the apparent reluctance of African-Americans to make Advance Directives and identified problems that could not be explained entirely by cultural differences but needed to be understood in the context of inequalities in power and a lack of trust of health professionals. Some patients wondered whether the offer of palliative care was a way of withdrawing potentially life-saving treatment.
Ott (Reference Ott2008) highlighted that different perceptions can arise about what has or has not been communicated. While African-American nursing home residents in her study clearly stated that they had never been asked about their preferences for end-of-life care, the staff were adamant they had been asked at the time they came to live at the home. The implication of this finding is that communication needs to be done in more effective ways, perhaps a number of times, and that families should be involved. Taken together, these studies challenge the idea that older people's preferences can be established in a straightforward way with each individual making an independent and autonomous decision that should stand once and for all about their preferences for end-of-life treatment. Older people bring to such decision-making a wide range of experiences, capacities, values and relationships. Moreover, views change in the light of experience and reflection, and with changes in health and illness.
Psycho-social factors
A number of studies highlighted the interrelationship of physiological, psychological and social factors at the end-of-life in old age. Several referred to participants' perceptions and fears about dignity and increased dependency, anxieties as to the symptoms they might face and about being a burden. Depaola et al. (Reference Depaola, Griffin, Young and Neimeyer2003) concluded that fear of death is strongly related to age – the older one gets, the more likely it is that existential fears will come to dominate – and also influenced by the experiences of ageing that participants saw in others. Fear of being a burden was a major theme in the study by Pleschberger (Reference Pleschberger2007), who argued that this cannot be separated from the broader cultural and social values expressed in daily reminders about the cost of caring for dependent older people.
The role of families
Concern for families was another recurring theme. Three main perspectives were identified. Firstly, families should be involved in discussions about end-of-life treatment decisions or even take the lead in these. Secondly, they should not be overburdened with their care and, thirdly, being part of a close family network at the end-of-life represents an essential feature of a good death. Bowman and Singer (Reference Bowman and Singer2001), Seymour et al. (Reference Seymour, Payne, Chapman and Holloway2007) and Bito et al. (Reference Bito, Matsamura, Kagawa Singer, Meredit, Fukuhara and Wenger2007) all highlighted the importance of families in helping older people to arrive at decisions about end-of-life care and treatment. Bowman and Singer (Reference Bowman and Singer2001) and Kwok, Twinn and Yan (Reference Kwok, Twinn and Yan2007) found that the cultural value of filial piety might prevent family members from agreeing to withdrawal of treatment for an elderly relative. The Japanese-Americans in the study by Bito et al. (Reference Bito, Matsamura, Kagawa Singer, Meredit, Fukuhara and Wenger2007) regarded the involvement of families in end-of-life treatment decisions as essential to preserving harmony, even though this might entail decisions that were not in accord with their own wishes and desires. Schroepfer (Reference Schroepfer2006) reported that some participants were concerned about the adverse effect on their families of a physician-assisted death and the association of the death with suicide. Close family relationships were a factor in these older participants' decisions to carry on living. On the other hand, the participants in Seymour et al. (Reference Seymour, Gott, Bellamy, Ahmedzai and Clark2004) raised the possibility that families should have a veto over treatment decisions.
Concern over the potential burden of care on families is a challenge to the policies in many Western countries that favour enabling older people to die in their own homes. In many studies, the participants frequently referred to the competing needs and responsibilities of their adult children. This was exacerbated for the Chinese participants in the study of Seymour et al. (Reference Seymour, Payne, Chapman and Holloway2007), who were concerned about the contaminating effects of a death at home. Relationships with family or friends are widely considered to be essential to a good death, and play an important role in helping older people to deal with fears and existential anxieties, as described above, and in providing reassurance that there would be someone who could be trusted to understand their needs. Gelfand et al. (Reference Gelfand, Balcazar, Parzuchowski and Lenox2004) highlighted the importance of family involvement for migrant older people with different languages from health providers and because of the need for clear communication. Chinese older people in the UK derived comfort and support from the food provided by their families (Payne et al. Reference Payne, Seymour, Chapman and Holloway2008).
Having family present to accompany the dying person was considered desirable, although Pleschberger (Reference Pleschberger2007) found that to an older person at the end, being alone or not was less important than who was present. Being at peace with others was a crucial feature of a good death in van der Geest's study (Reference Van der Geest2004), although this was expressed more in terms of having the opportunity to draw relationships to a conclusion than actual accompaniment at the moment of death. Becker (Reference Becker2002) highlighted the longing of migrants to return home to familiar surroundings with family and friends at the end. The Aboriginal woman in Fried's (Reference Fried2003) case study chose to go back to her traditional homeland rather than have treatment for renal failure.
Conclusions
This review has identified both strengths and weaknesses in this area of research. In terms of substantive knowledge, the lack of research beyond Western countries is a considerable limitation. The model of a ‘good death’ that is predominant in the West has been subjected to critical commentary by a number of researchers. At a broader level, an important point made by van der Geest (Reference Van der Geest2004) is that the vastly different patterns of mortality in various parts of the world have major implications for our understanding of older people's experiences of ageing and dying. Several lessons can be drawn from the methodological discussion in this review. It is notable that except for those where proxy respondents were used, almost all the studies excluded people with cognitive impairment from their samples and this remains a significant gap in knowledge and a challenge for researchers to develop ways of managing ethical concerns regarding consent to participate. The need to enhance the impact of research in this field has been identified and a number of strategies might be considered, including designing studies that build on previous work. George (Reference George2002) suggested that researchers should develop parallel studies that are comparable in terms of their research questions, methods and analytical approaches. She also argued that the need for longitudinal research is the ‘highest priority’ (2002: 96), a point also made in other papers in this review. George commented perceptively that most theories of dying are process theories, but that most research methodologies do not enable us to examine and test these. Arguably, we are now at a point at which, in the light of experience, the research questions and methodological and ethical challenges are clearer and provide a good basis for future gerontology research.
