From neighbour to carer: An exploratory study on the role of non-kin-carers in end-of-life care at home for older people living alone

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1 666785PMJ / Palliative MedicinePleschberger and Wosko research-article2016 Original Article From neighbour to carer: An exploratory study on the role of non-kin-carers in end-of-life care at home for older people living alone Palliative Medicine 2017, Vol. 31(6) The Author(s) 2016 Reprints and permissions: sagepub.co.uk/journalspermissions.nav DOI: journals.sagepub.com/home/pmj Sabine Pleschberger and Paulina Wosko Abstract Background: A growing number of older people are living in single households. They form a disadvantaged group within society as regards staying at home, most likely towards the end-of-life. It is mainly non-kin-carers who try to fulfil older people s desire for a home death, but very little is known about the challenges they face during their involvement. Aim: Getting insight into the engagement of non-kin-carers in the support for older people living alone, and a better understanding of the challenges they have to manage in end-of-life care. Design: Exploratory qualitative design; perspectives of non-kin-carers were collected through personal in-depth interviews (n = 15) retrospectively. Setting: Home care, urban and rural areas in Austria Findings: A slow and subtle transition into care is what characterizes non-kin-care relationships which show differences between friends and neighbours. Towards the end of life, the main challenges emerged around increased physical care needs, issues of decisionmaking and facing the process of dying. Prior experiences with the latter, which most of the involved carers had, influenced non-kincarers steadiness to allow home death and so did reliable formal support, particularly from specialized palliative care teams. Conclusion: Support of older people living alone, in particular until the last stage of life, comes along with multiple efforts. Respectful and supporting relationships between professional carers and non-kin-carers are vital to keep non-kin-carers involved. Keywords Informal care, non-kin-care, home care, end-of-life care, older person living alone, qualitative research What is already known about the topic? A growing number of older people, mostly women, live alone in single households. They form a disadvantaged group within society regarding dying at home. What this paper adds? Non-kin-carers were highly committed in the support of older people living alone until the end with a variety of motivations. Increasing physical needs towards the end of life changed relationships and increased the risk of overburdening non-kin-carers. Cooperation between non-kin-carers and formal care services, particularly specialized palliative care teams, turned out to be elementary for robust support arrangements allowing dying at home. Implications for practice, theory or policy Health professionals have to be aware of non-kin-carers needs in order to keep arrangements stable. Future palliative care will have to integrate more complex support networks involving non-kin-carers. Institute of Nursing Science and Practice, Paracelsus Medical University, Salzburg, Austria Corresponding author: Sabine Pleschberger, Institute of Nursing Science and Practice, Paracelsus Medical University, Strubergasse 21, 5020 Salzburg, Austria. pleschberger@oepia.at

2 560 Palliative Medicine 31(6) Introduction Older people who live alone form an ever growing group in many countries. In 2011, 46.5% of all Austrian households with inhabitants older than 65 years were single households. 1 Similar data are available from Germany, the United Kingdom and the United States, where the proportion of people living alone among the 65+ age group ranges from 28% to 33% in 2011/ The majority of older people living alone are women. Following an analysis of German data, more than half of all women (56%) aged 80 years live alone compared to 22% of men in the same age group. 2 Old age usually comes along with an increased risk of health problems which also often imply comprehensive care needs. Despite various home-care services which have been developed all across Europe in the last decades, informal caregivers play a vital role in long-term care arrangements. This is even more the case in end-of-life care, 5 where people living alone form a disadvantaged group in society with regard to the chance of dying at home. 6 Since informal caregiving is mostly understood as family caregiving, little attention has been paid to nonkin-carers both from gerontology and from the health and care sciences. 7 However, to overcome the problem of an increased risk of institutionalized death for people living alone, non-kin-care arrangements might be a vital resource for the future. Hence, the question arises whether this kind of support from friends and neighbours is robust enough to enable staying at home even at the end of life. The exploratory study which provides the context for this article was commissioned by the Austrian Federal Ministry of Labour, Social Affairs and Consumer Protection with the aim of getting insight into the contribution of non-kin-carers in end-of-life care for older people living alone at home. In this article, we apply the term non-kin-carers to people who take care of somebody with whom they are not in a family relationship outside a formal framework. These non-kin-carers are mainly friends or neighbours. Background There has been increased international attention on informal caregivers in palliative care in recent years but only a marginal number of studies have shown a specific interest in non-kin-carers. 7 In turn, studies on non-kincare relationships only rarely include end-of-life issues; however, they provide evidence on some characteristics of non-kin-care relationships which might be of relevance here. Non-kin-care arrangements usually do not take place between total strangers but often develop from neighbourhood relationships. 8 Motivations of non-kin-carers to help others are quite manifold, as qualitative findings suggest, whereby compassion, friendship and a sense of satisfaction are named as key motivation factors. 9 Degrees of the involvement have not yet sufficiently been analysed. 10 Studies which focus on the perspectives of the older person living alone underline a great need for autonomy and independence expressed by the participants. 6,11,12 Thus, the ability to live alone until the end is associated with dignity and self-determination. 13 Findings from a study on older people suffering from cancer suggest that those who live alone are much more pessimistic about their chance to remain at home than those who do not live alone. 11 The fact that the prospect of moving into a nursing home is usually associated with anxiety 11 underlines the threat of discrimination which older people living alone are exposed to. It is only recently that the implications of living alone for place of death have been under study, providing corresponding findings. 6,14,15 An explicit wish to die at home and the access to an around-the-clock palliative care team are prerequisites for allowing home death of people living alone. 15 The presence of non-kin-carers has doubled the chances of a home death for older people living alone in one study. 14 However, until now, none has yet explored the role of non-kin-carers in end-of-life care of older people living alone in more detail. In the given work, we aim to better understand characteristics of non-kin-care relationships for older people living alone and the challenges that non-kin-carers face in their involvement towards the end of life. Methods The consolidated criteria for reporting qualitative research (COREQ) are used as a guideline to present our study. 16 Study design and setting Within the wider framework of a qualitative exploratory design, we followed a case study approach in order to reconstruct care trajectories of older people living alone and dying at home. 17 The retrospective study took place in rural and urban areas in three Austrian regions in order to account for the varying regional care systems. The study is based on qualitative in-depth interviews with former non-kin-carers of older people living alone who managed to stay at home until death, and complemented by additional interviews with professional carers for select cases (n = 8) as part of the case study approach. We are primarily interested in the perspective of non-kincarers in this article and will therefore refer in detail to this part of the study in the following sections. Recruitment and participants We were looking out for people who were involved in a home-care arrangement with an older person living alone at home with whom they had no family bonds. At the time of recruitment, their involvement had to be already over due to death of the older person. The inclusion criterion at

3 Pleschberger and Wosko 561 home was referred to as the place of care rather than the place of death in order to include cases which involved admission to a hospital or a nursing home in the last days. Exclusion criteria were an age under 18 and inability to communicate in German. We applied multiple strategies in the recruitment process, including home-care services, general practitioners (GPs) and specialist palliative care services in all three regions. The gatekeepers were contacted personally and received written information about the study in order to recruit persons of interest who were willing to be contacted by the research team for participation. After sending an information package to those persons who declared interest, the researchers arranged a date for an interview. Our purposive sample consists of 15 persons who took care of an older person in a single household, most of them until death. Additional characteristics we considered in the sampling process were the context of living (urban or rural area) and old age (75+). Table 1 provides an overview of sample characteristics of non-kin-carers as well as patients. Data collection Using in-depth interviews for data collection, we sought to acquire a profound understanding of the informal carers situation. 18 Based on results from the literature analysis, an interview guide was developed and slightly adapted after the first interview. It consisted of 12 open questions mainly narrative stimuli and additional inquiries and covered the following areas: initiation of care arrangement, experiences with support and/or care, challenges at the end of life and cooperation with professional caregivers, where applicable. All interviews with non-kin-carers were conducted by the second author (P.W.), a female PhD student with significant experience in conducting interviews on sensitive topics in long-term care contexts. The interviews took place at the participants homes without the presence of further people and lasted between half an hour and 1 h 20 min. They were digitally recorded and transcribed verbatim. Reflection on the process of data collection was systematically shared with the project leader, that is, first author (S.P.). The process of collecting data took place over 4 months and dates back to Analysis Qualitative analysis aimed at revealing relevant issues and themes around non-kin-care relations and support for older people living alone with a specific focus on the challenges which arise around the end of life. A process of coding all data in detail applying a constant comparative approach was used. 19 The developed coding frame was grounded in the data rather than decided a priori but was matched with themes available from the literature. The first five interviews were coded by both authors and emerging codes were discussed thoroughly in order to Table 1. Sample characteristics. Non-kin-carer (N = 15) Age (years) ( 62.8) Gender female (n = 11), male (n = 4) Region urban (n = 9), rural (n = 6) Caring for friend (n = 8), neighbour (n = 7) Older person living alone (N = 14) Age (years) ( 80.5) Gender female (n = 13), male (n = 1) Diagnosis cancer (n = 10), frailty (n = 2), dementia (n = 1), other (n = 2) Place of death 7 at home, 5 in the hospital establish a sound coding scheme. This was then applied by PW who was backed up by SP with regard to any questions and uncertainties regarding assignments or further emerging themes in the course of this process. Both researchers were involved in grouping the codes subsequently into broader categories of data which provided a description of the inherent themes and phenomena. MaxQDA software was applied for the coding process as well as for allocating memos throughout the process of analysis. Ethical considerations Approval to conduct the study was obtained from the Research Committee for Scientific and Ethical Questions of the Health & Life Sciences University (UMIT, Austria) where the study was launched. Written informed consent was gathered from all participants directly before the interview. All collected data were anonymized at the point of transcription, and data protection issues were considered thoroughly throughout the research process. All participants who declared interest in the results of the study received a short summary and the weblink to access the full study report at the end. Results The characteristics and challenges of non-kin-care relationships were largely shaped by the dynamics of the care trajectory towards the end-of-life care. Therefore, we organize our findings along key elements of the care process. To begin with, the constitution of non-kin-care relationships was significant with regard to motives for involvement and shed light on the different nature of relationship between friends and other non-kin-carers. The transition from support into a care relationship came along with the necessity to negotiate the care arrangement more explicitly. Following that, a phase of steadily growing involvement of non-kin-carers support became obvious due to a declining health condition. Dealing with increasing physical care needs proved to be a major challenge. In the last phase of life, dealing with overburdening situations,

4 562 Palliative Medicine 31(6) prior experiences and formal care support were identified as key themes. The onset of non-kin-care relationships The way how non-kin-care relationships were constituted revealed substantial differences between friends and neighbours: Among friends, rather smooth transitions to support arrangements were common; often it was difficult for them to identify a specific beginning. Friends used to be more involved in daily routines and were usually quite well informed about health problems and support needs. This was different for neighbours. Even if they were not total strangers before, it was the act of providing help that constituted a relationship. These so-called small beginnings were usually initiated through a request for a onetime support, like giving a lift to the supermarket, bringing along some groceries, watering the flowers or accompaniment to medical services, as described in the quote below: We are farmers and we had rented a field from her. And once, during a very hot summer, she asked if I could water her flowers at the cemetery. I said Of course I can do this. Months later she called again and asked if I could take her to hospital. And so over the last three to four years she needed more and more support. (1, Neighbour) The motivation for a neighbour s support was often grounded in compassion rather than affection, a certain feeling of social obligation which also highlights the different nature of the relationship compared to friends: Well, I felt sorry for her, she was on her own, I knew she had a home aide twice a day but I knew she would wait for me to come and listen to her. I could not let her down, I mean, there might be people who would do that, at least I am not the sort of a person who is able to do this. (12, Neighbour) The differences among non-kin-carers also play a role in the further process of support and care. The transition from support to a care relationship The transition from a supporting to a caring relationship usually happened in a subtle manner. Quite often non-kincarers were not even asked, let alone acknowledged, for their support. Clear indicators, like assigning financial issues to non-kin-carers or expanding provision of support to personal care, were rather the exception here. Hence, explicit discussions of a care arrangement between the two parties seemed to produce a clear, and thus stable, commitment like in the following example: I will get a plot of land and therefore I shall, when she passed away, care for her grave for the next ten years. [ ] well then I thought that I can do this and that from now on, you know? (1, Neighbour) Triggers for making the relationships more explicit and outspoken were also set by institutions, for example, when the crucial question of Whom shall we contact in case of emergency? was asked, or when planning the discharge from hospital made evident that one has to take the responsibility for arranging care at home. If relationships were negotiated openly, issues of reciprocity gained significance. In those cases where the older people living alone offered material goods, non-kin-carers made sure without being prompted by the interviewer that this was not the main reason for their engagement. Except from the case quoted above, material reciprocity in the relationship was not raised openly by non-kin-carers in our sample. Instead, various references to issues of emotional reciprocity, such as gratefulness, giving something in return, were found in our data. The nature of the relationships changed with the increase of involvement, but a broad variability can be stated: In some cases, quite close connections evolved and showed family-like dynamics, for example, when the person living alone became almost an integral part of the neighbour s family life. Others drew a line between non-kin-care involvement and care for kin like in the following quote: And most of all, it was not a member of the family. It is a completely different relationship, if you have got a mother [to care for] or if it is your neighbour. Well, I liked her really, but there is a difference. (Int. 12, Neighbour) Yet, despite intense interaction and engagement of the non-kin-carers, some relationships remained rather onesided and superficial. This seemed to be mainly grounded in personal characteristics of the older people living alone, for example, attributions like a bit odd or headstrong. Declining health and growing involvement As a result of the declining health condition, non-kin-carers had to cover an increasing amount of support activities, such as physical care and emotional support, for example, empathetic listening and giving comfort. Particularly, the reality of increasing physical care needs raised serious concerns for non-kin-carers, so many neighbours drew the line here and formal caregivers were introduced. Although friends seemed to be more agreeable to take on physical care activities, additional professional help was finally part of all arrangements where home death was achieved. As a matter of fact, non-kin-carers were also engaged in organizing care services and took on a case management role. In some cases, non-kin-carers were already present early in the morning to take care of urgent needs and to schedule the day, either with the older person living alone or the home care aid (if present). It regularly happened that

5 Pleschberger and Wosko 563 non-kin-carers were called late in the evening or even at night, which was considered a major burden by them. As one participant reported: The amount varied, can t tell exactly. Often I was there two, three times a day, when he needed something essential. And then there were days, when he sounded all right on the phone and then I wasn t there at all. But certainly, there have always been up to three phone calls a day. (7, Friend) Risks for overburdening emerged in the data, as well as conflicting needs of non-kin-carers own families which had to be handled; for example, one carer was confronted by her husband with the argument that her engagement seemed too high for a non-relative person. Many support arrangements lasted for several years, some even up to more than 15 years. None of the non-kincarers in our sample had considered giving up during the support process, not even in times of extreme exertion. Non-kin-care at the end of life A broad variety of burdens emerged in the last phase of life. As death was approaching, challenges like difficulties with communication or increased physical care needs had to be managed apart from being confronted with a person s imminent dying. Dealing with limited nutrition was one crucial factor for non-kin-carers; altered respiration ( death rattle ) was also perceived as extremely distressing, especially by carers who, for the first time, faced somebody dying. In these situations, non-kin-carers were tempted to call an ambulance, jeopardizing the person s wish to die at home. Non-kin-carers prior experiences with death and dying had an advantageous effect on maintaining the care arrangement in our sample. Some of them turned out to be lay experts in care of the dying which had a definite positive influence on the chances of dying at home for the older person living alone. Such experiences allowed earlier recognition and better understanding of symptoms and reduced anxieties of imminent death. Furthermore, we found that if carers were informed and supported, it was easier to endure the process of dying. Mainly, specialized palliative care teams provided this kind of advance information and support, as one of the interviewees described: At this time I couldn t sleep this was impossible. And then the hospice nurse prepared me for the situation that she would die of suffocation That s how it was then. It was like her last breath and then indeed then it was over. (15, Friend) In particular, the 24-h availability of palliative care services was a great relief for the non-kin-carers. It is not only the burden of managing distressing symptoms but also the confrontation with the process of dying and death which had a burdensome effect on non-kin-carers, as the following quote of a supporting male friend illustrates: When you see how a human is physically decaying When you touched him, you could pull down his skin and then the blood splattered, cause the blood was diluted there are situations, when you simply feel overburdened and you don t know how to handle it. (8, Friend) Apart from prior experiences, the closeness of the relationship certainly had an influence on this. Once more, differences between friends and neighbours become obvious here. Discussion This study has particularly shed light on the challenging aspects of non-kin-care relationships in end-of-life care for older people living alone. The rationale was grounded in the wider debates on the concept of a good death where the home is supposed to be the preferred place of care for most people. 20,21 Compared to younger people, older people are viewed as the disadvantaged dying in terms of access to health and social care, even more so at home. There is increasing awareness of the important role of non-family support in many countries due to societal and demographic changes. Particularly, research in neighbourhood networks has stressed the role of friends and neighbours who can essentially contribute to the wellbeing of older adults. 22 This has yet to be transferred to the area of end-of-life care, where friends and neighbours seem to be of vital importance in order to allow staying at home until at last, notably for older people living alone. 12,13 In any case, concepts which focus on the community level to improve end-of-life care seem to be of high relevance for the group of interest here. 23 Frameworks like compassionate communities might have the power to influence the local care culture and encourage citizens involvement in support activities. However, an excellent formal care support system will be pivotal in any concept involving the community in care for the dying. 24 Our findings show a remarkably high intensity of nonkin-care involvement. As research shows, a general problem in informal care arrangements outside family bonds is seen in the danger of overburdening neighbour carers. 25 Due to austere personality traits of some older people living alone, carers are challenged and tend to withdraw. Professionals seem to have a role in connecting, mediating or finally providing some relief to informal neighbour carers, others put specific weight on family practitioners in this regard. 25,26 In our study, specialist palliative care services were experienced as supportive in this regard. Similar to other studies, engaging in support and even care for another person is grounded in various motives, making it impossible to be reduced to one key motive. 8,9 In

6 564 Palliative Medicine 31(6) addition, it is important to acknowledge that not only intrinsic reasons play a role. In our data, the issue of material reciprocity emerged, for example, the promise to inherit something of value after death. The way non-kincarers in our interviews handled such issues suggested they wanted to present the motives for the engagement as morally clean. Nevertheless, this issue is relevant in the discourse of social equity: Those who have nothing to offer may be at greater risk of getting no support. A recent study showed that a broad variety of financial costs arise for families within the palliative care context. How this issue is met within non-kin-care relationships is an open question. None of the interviewees mentioned direct costs which might have resulted from supporting or caring, for example, parking, food or telephone. Cultural factors might play a role, too. As people in Austria are not keen on talking about their finances in general, it is not surprising that we ourselves did not push this issue in the interviews. Finally, our study has highlighted the importance of differentiating between friends and neighbours as non-kincarers to better understand the various phenomena at work here. From the literature, we learned that neighbours as informal carers tend to be much younger than the caring friends, but friends invest on average more hours per week supporting their friend in need. 10 We found differences regarding the willingness to take over physical aspects of care, with friends being more agreeable to take them on. Furthermore, the character of the relationships was different which could be best observed at the onset of non-kincare involvement as well as in the phase of death and dying, where personal affection was quite high for friends compared to neighbours. This issue has to be considered with regard to developing adequate support for non-kin-carers. With regard to future research in this area, we would like to close with some methodological reflection. Recruiting non-kin-carers for this study turned out to be a major challenge, as non-kin-carers form a quite invisible group in society. They often think of their engagement as private with some not even considering themselves as carers. Furthermore, the retrospective design implied that the care arrangement had already been over at the time of recruitment. Health professionals often had lost touch with the non-kin-carers, so it was partly difficult to rely on them as gatekeepers as originally expected. Applying various strategies for recruitment and allowing sufficient time for this process was an important lesson we learned from this study. Beyond this, some limitations with regard to recruitment and sampling have to be considered. As we were looking for non-kin-carers who supported an older person living alone at home until death, the study does not cover issues like quitting engagement half way through the caring process. Moreover, further research is necessary to better understand the barriers of getting involved in this form of relationships. Finally, our research has not considered cultural issues, which should be specifically approached in future research, indeed, as substantial variety can be expected here. Conclusion Non-kin-carers proved to be highly committed in their engagement for older people living alone; yet, some challenges have to be taken into account and addressed especially regarding end-of-life issues. It is mainly the burden of increased physical care needs and anxieties when confronted with death and dying which matter the most for non-kin-carers. Therefore, the commitment to care cannot be realized without support from palliative care specialists. However, the phenomenon of these non-kin-care arrangements still receives very little attention and support from health professionals as well as the wider public, not to mention palliative care research. It is vital to, first and foremost, raise awareness of the specific needs of non-kincarers as their relationships with older people living alone do differ from family care arrangements. Acknowledgements We would like to thank all people who supported us in recruitment for this study, as well as the informal carers who shared their experiences with us. Declaration of conflicting interests The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article. Funding This work was funded by the Austrian Federal Ministry of Labour, Social Affairs and Consumer Protection. References 1. Statistik Austria. 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