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Research
Patients with pancreatic cancer and relatives talk about preferred place of death and what influenced their preferences: a qualitative study Alison Chapple,1 Julie Evans,1 Ann McPherson,1 Sheila Payne2 1Department
of Primary Health Care, University of Oxford, Oxford, UK 2International Observatory on End of Life Care, Lancaster University, Lancaster, UK Correspondence to Alison Chapple, Department of Primary Health Care, University of Oxford, 2nd Floor, 23–38 Hythe Bridge Street, Oxford OX1 2ET, UK; [email protected] Accepted 17 July 2011 Published Online First 25 August 2011
ABSTRACT Objective To explore reasons why people with pancreatic cancer, who are reaching the end of their lives, say they wish to die at home or elsewhere, and why preferences may change. Design Qualitative study using semistructured interviews followed by thematic analysis. Setting Respondents recruited from different parts of the UK during 2009/2010. Participants 16 people with experience of pancreatic cancer (8 patients and 8 bereaved relatives) who discussed place of death in detail during an in-depth interview (from a total sample of 32 people with pancreatic cancer and eight relatives of others who had died of this disease). Results People’s preferences were affected by their perceptions and previous experiences of care available at home, in a hospice or hospital. Preferences were also shaped by fears about possible loss of dignity, or fears of becoming a burden. Some people thought that a home death might leave bad memories for other members of the family. People with pancreatic cancer and their relatives were aware that preferences might change (or had changed) as death approached. Conclusions The National Health Service End of Life Care Strategy for England seeks to meet the needs of people who are dying and promotes better support for home deaths. More information is needed about why patients hold different views about place of care and place of death, why patients’ preferences change and what importance patients attach to place of death. Health professionals should bear this in mind if the subject is raised during advance care planning.
INTRODUCTION In 2000 a systematic literature review of the preferences of patients with cancer for end of life care and death concluded that home was the most common preference, with inpatient hospice care as second preference.1 Since then research has found that in the UK end of life preferences vary across different ethnic groups, 2 regions, 3 and may change over time as illness progresses.4–6 Research using death certificate data has also found that a minority of people dying from cancer die at home (22.1% in England), although it seems that most people want to do so.7 In parts of England, such as the South East, people are twice as likely to die in hospital (47%) than at home (23%).8 Factors affecting place of death include the treatment available in hospital, personal preferences, availability of palliative care services and family support, resources (such as how many hospice beds BMJ Supportive & Palliative Care 2011;1:291–295. doi:10.1136/bmjspcare-2011-000091
are available) and proximity to a hospice or hospital.9 10 Although studies have shown that most people want to die at home, not much is known about why people prefer a home, hospice or hospital death, the importance of place of death to patients, why patients change their minds about where they wish to die and how decisions are made. In-depth qualitative studies, such as that conducted by Thomas et al, 3 with patients who are dying, and with their carers, are best suited to answer these questions, but such studies are rare, probably because any research with dying patients is difficult and raises ethical dilemmas.4 Thomas et al 3 found that many factors shaped patient and carer preference for place of death. None of their participants expressed a wish to die in hospital, but wanted either a home or hospice death. The authors suggest that the strong pro-hospice stance may be partly due to biases in the sample. Community specialist care nurses recruited most of the patients for interview, and most patients had had some contact with one of two hospices in the North West of England. With this in mind we decided to explore the preferred place of death in a sample of patients with pancreatic cancer (and relatives of people who had already died of the disease), from all over the UK, recruited in different ways. Most patients with this cancer die within a year of diagnosis,11 so their views about place of death are a particularly pressing matter. The aim of our study was to explore why some of these patients reported a preference for end of life care and death either at home, hospice, nursing home or hospital, how strongly they felt about this, and how they described making decisions.
METHODS In 2009/2010 we conducted a qualitative interview study using semistructured interviews. With approval from the Berkshire Research Ethics Committee (09/H0505/66), we invited people to join in a study of their experience of pancreatic cancer. Volunteer packs were distributed by five consultants and a nurse, who worked in different parts of the UK. We also distributed packs via Pancreatic Cancer UK, the Pancreatic Cancer Research Fund and general practitioners. Packs included an information sheet and reply slip. Those wanting to know more about the study contacted the research team. Some people were recruited by an advertisement in a free London newspaper, personal contact, or the snowball 291
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Research method. Four people contacted the research team via the internet after hearing about the project on television or radio. Eight of the people who responded to the advertisement and to the television and radio programmes were relatives of people who had died of pancreatic cancer. We included them in the sample so that we could capture their views about the end of life experiences that the other 32 participants could not describe. We aimed for a maximum variation sample of 40 people from different social backgrounds and ethnic groups, and different parts of the UK (see table 1). One of two of the authors (AC and JE) interviewed people at their chosen place (usually his or her home) for between 40 min and 2 h. Having signed a consent form people were asked to talk about their experience of cancer; they could pause, or stop the interview at any time. In the fi rst, narrative section of the interview, respondents were asked to relate, in their own words what had happened to them from the time when they fi rst noticed symptoms. When the narrative was fi nished, a semistructured interview guide was used to explore any relevant issues that had not already been covered. This included the question, ‘How do you view the future?’ Most of the patients we interviewed were recovering from surgery, having chemotherapy or taking part in a clinical trial. They seemed hopeful that they would survive for at least a number of years, so even though the prognosis for people with pancreatic cancer is grim it is understandable that these people did not bring up the subject of death. Only nine of the patients made it clear that they knew they were dying and that there was no pretence or hiding. Glaser and Strauss12 called this ‘open awareness’. Eight of this group discussed place of death. They were aged 44–81 and had been diagnosed between 2004 and 2009. They were all white British except for one man who described himself as black British. The eight relatives of those who had died who discussed place of death were aged 43–69 and were all white British except for one Pakistani woman. The interviews were all audio recorded, fully transcribed, checked and then returned to the participants, so that they could read the text (if they wished) and remove or clarify sections if necessary. Pseudonyms are used in this paper. Table 1 Sociodemographic characteristics of the entire sample Characteristics Age at interview 35–44 45–54 55–64 65–74 75–84 Gender Men Women Occupation (or previous occupation if retired) Professional Other non-manual Skilled manual Other, eg, housewife Ethnic group White British Indian Pakistani Black British Year of diagnosis 1995–1999 2000–2006 2007–2010
292
People with pancreatic cancer
Relatives of deceased patients with pancreatic cancer
3 7 9 10 3
2 4 0 2 0
17 15
5 3
15 10 5 2
6 2 0 0
30 1
7
1
1 0
1 5 26
1 5 2
The authors read and re-read the data, constructed a coding frame, coded the data and then examined themes across the whole dataset, as well as in the context of each person’s interview. A qualitative interpretive approach was taken, combining thematic analysis with constant comparison.13 14 QSR N6 (a qualitative data-indexing package) facilitated the analysis.15 Two of the authors read the relevant QSR N6 reports and discussed coding and interpretation of results. Further analyses and extracts from the interviews can be found on http://www. healthtalkonline.org/Cancer/Pancreatic_Cancer
RESULTS People described various factors that affected their preferences and changing views about end of life care and where they wanted to die, including experiences and perceptions of care available at home, in hospital, nursing home or hospice, and fears of negative associations with place of death.
Care available at home Diana, who had an inoperable tumour, had declined chemotherapy, and at the time of the interview was having palliative care at home. She explained why home would be the best place to die: I: Do you want to die here at home? R: Yes, I do. I don’t want to go into a hospice. I: Why do you say that? R: Because I’ve got more comforts here at home. My husband is here to do more things for me. He’s a oneto-one nurse, whereas with the best will in the world, you don’t get that anywhere, not even in the hospice. So it’s more of a comfort at home, and having all my things around me as well. This is where I want to be, and my family. Other research has found that patients want to die quietly and with dignity, 3 16 and some of the people we interviewed said they wanted to die at home but only if they could do so with dignity and without burdening others. They knew that their preferences might change as death approached, depending on circumstances. Ava, for example, wanted to die at home among her family and familiar things. She hoped it would be a ‘nice experience’ for her family, ‘rather like a home birth’. However, she recognised that a home death might not be possible: I’d like to die at home as long as I could get enough caring and nursing (. . .) just trying to maintain some sort of dignity; and I think it can be very difficult for people at home unless they get a lot of support (. . .). I wouldn’t want to go to hospital. But I can see that if I got an obstruction and was vomiting all the time, and they couldn’t manage it here, I might have to go to hospital. Some of the relatives we interviewed explained that with the help of palliative care nurses, such as Marie Curie nurses, a dignified home death had been achieved.
Experience of hospital care Aiden said that his wife, Marie, died peacefully in hospital. He recalled that she had had ‘total trust’ in the hospital, and he thought she had been happy to die there: All the support is there [in hospital], and she knew people in the hospital and they knew her, so it was familiar faces BMJ Supportive & Palliative Care 2011;1:291–295. doi:10.1136/bmjspcare-2011-000091
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Research (…) I think implicitly because we felt so supported by the hospital there was never any strong pressure to say, “Oh I really want to die at home” (. . .) She just knew that the hospital was able to cope with pain, pain control and those sorts of things. After visiting a hospice Theresa’s mother had said she wished to die there. However, her health deteriorated suddenly and Theresa and the family decided that it was not in her mother’s best interest to move her. They were satisfied with her hospital care: Her illness deteriorated at that point so quickly that they were making plans to move her [from hospital to hospice]. But the concern was that the move in the ambulance, which would have been at least an hour and a half, would have been really, really disruptive. We were lucky enough that she was in a private room, she wasn’t on a ward. If she’d had been on a ward I think we’d have said, “We’ll take her to the hospice,” but she was in a private room that was quiet, and it was very good nursing care, and we could stay there, so we didn’t feel an enormous need.
Perceptions and experience of hospice care Some people had visited their local hospice. Doris, for example, had liked the ‘very friendly’, ‘comforting’ and ‘very cheerful’ atmosphere. She said she “wouldn’t mind being in there in the least, to be looked after, if it came to that in the end.” When Sarita’s mother was dying she wanted to leave hospital because she did not feel safe or that she was getting enough care and attention. Sarita said that her mother had already been in the hospice and liked it very much. When the hospital staff told Sarita that her mother could either go home or to a hospice she discussed it with her: I said to my mum, “They’re going to let you out of hospital, you know, you can either go to the hospice or you can come home.” We didn’t tell her that she was going to die at this stage. And my mother said to me, “You know, I want to go to the hospice.” Sarita reported that her mother died peacefully in the hospice. Sarita explained why she felt that it had been the best place for her mother’s death: They were so respectful in terms of our sort of traditions. It was just, it was like the perfect place for her to have been, you know. And I felt that coming there she felt that she’d sort of come home. And then she was sort of ready to go within those surroundings. Doug’s wife was at home until a week before she died. He said that the move to the hospice was ‘completely the right move’. Frances was vomiting and needed more help with pain control. She was in a lovely family room where he and their boys could stay the night. He explained why she had been glad to be in the hospice: R: We had quite a nice time there [the hospice] actually (…) I was no longer worrying about being on top of any medicine that she required or painkillers. (…) I had more time. Frances was more comfortable. So, to say we had a nice time sounds really daft. But it was a … a good time [crying] BMJ Supportive & Palliative Care 2011;1:291–295. doi:10.1136/bmjspcare-2011-000091
Fears of negative associations with place of death Some people expressed the fear that if they died at home family members would forever associate the home with death and that this might be unbearable. Stuart, for example, returned from work overseas, knowing that he might die, so he and his wife rented a house rather than return to their own home: We’re living in rented accommodation at the moment (. . .). We could have moved back into our old home that we still own, that was rented out, but we decided not to do that because we felt that it would be pretty tough, if I died in that home, for my wife, either to live in a place where her husband had died, or if she had to sell up because she couldn’t bear thinking about living in that place. Laura was likewise determined not to die in her own home. She wanted to die in the local hospice but said that a ‘little corner of the hospital’ would be better than home: R: I don’t want to stay here [home]. I do not want to die here. I: Where would you like to go? R: Preferably in a hospice. There’s a really nice one in the next town. I: Have you been to see it? R: Yes, (…) It’s a nice place. It was very nice and calming. (. . .) But they’ve only got ten beds, so it’s not a certainty that you are going to get there, and I said, “I don’t care if I’m in a little corner of the hospital as long as I’m not here [at home]”. I do not want to be here (. . .) I do not want the kids walking in and saying, “Oh that’s where my Mum died,” or like my husband getting in bed and thinking, “Oh my wife died in here with me” (. . .) I: Do you think the care that you’ll get would be better in the hospice than anywhere else? R: I don’t think there’ll be much difference really, because we’ve got a really nice hospital. We’ve got a really nice hospital here and in the next town. These two examples show the wish to ‘protect’ surviving members. It is notable that Laura repeats her wish to die away from home four times in just a few minutes. Perhaps she feared an undignified, painful death. Toby also thought that if he died at home his relatives might fi nd this difficult because of unpleasant associations. He wanted to die at home but he said that nearer the time would discuss it with the family: I will call the whole family in, my brother, sisters and their partners and my nieces and nephews as well (. . .) I’ve got to talk about it [place of death] because do I really want the kids to be left in the house where their Dad, their loved one, has died? So that’s something we are going to discuss, as a family.
DISCUSSION It is often difficult to fi nd patients who are terminally ill who want to discuss ‘place of death’.17 In our study of 32 people with pancreatic cancer, eight of the nine people who had ‘open awareness’12 and who knew they were dying discussed the issue. Others did not raise the subject. Perhaps, as we noted earlier, they still hoped that in their case treatment would lead to remission. Perhaps they had not had the opportunity to take part in advance care planning (see below),18 or perhaps they 293
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Research deliberately avoided thinking about the subject. However the views of the eight who discussed the subject and the accounts given by eight carers of different individuals, illustrate the complexities and the shifting nature of people’s preferences for place of care and place of death, and why people may change their minds. Some people gave good reasons for preferring to die at home, but others said that a hospice, hospital or nursing home might be a better place for them to die. We interviewed people from across the UK, so preferences were not shaped by close proximity to a particular hospice or hospital. We also recruited in different ways, not relying heavily on community specialist palliative care nurses, which may help to explain why the people we interviewed were less ‘antihospital’ than those interviewed by Thomas et al. 3 Our study also helps to illustrate how some people make decisions. Toby, for example, said that as death approached he would gather his family together to discuss what would be best for everyone. Thomas et al 3 found that some people said that they would be reluctant to stay at home if they became a burden on the family owing to incontinence or other physical problems. We found this too, but we also found that some people were worried that if they died at home their relatives would fi nd this difficult because home would always be associated with death. It is interesting to note that when Seymour et al2 interviewed white and Chinese older adults living in the UK they found that while the white respondents favoured death in a hospice, Chinese old people expressed a preference for death in hospital, linking this to the availability of good nursing care, the possibility of maintaining hope, and concern about the possible ‘contamination’ of the home by death. Although the Chinese older people were not patients, and were not facing death at the time of the interview, these fi ndings are still relevant to our study. Others have also found that place of death can have symbolic meaning for people with cancer or other illnesses.19 20 Our study has limitations. When people stated preferences it was not always clear if they were talking about place of care or place of death. Sarita, for example, said that her mother wanted to go to the hospice, but that she had not been explicitly told she was going there to die. However, it is often hard to separate the two. It was a relatively small study, of mainly middle class white people. If we had interviewed more people from minority ethnic groups, who may have different cultural practices around death, and more unskilled manual workers we might have found additional reasons for preferred place of death. People on lower incomes may have fewer options. A longitudinal study could have told us more about how preferences changed over time, but this might have been hard to achieve, given the nature of the illness. Also the views of the bereaved relatives we interviewed may have changed since the deaths. They might have reconstructed events to minimise any feelings of failure about what happened or to leave themselves with more contented memories. The National Health Service End of Life Care Strategy tries to address the needs of the increasing number of people dying in England. 21 22 Current policy is to enable more home deaths, but as Costantini 23 argues, we need to look “more in depth at what we know about the ‘demand’ of most people to die at home.” Recent guidance from The General Medical Council urges health professionals to give patients the opportunity to take part in advance care planning. 24 This is a voluntary process of discussion and review to help an individual, who has capacity, to anticipate how their condition may affect them in future and, if they wish, set on record, choices about their 294
care and treatment. Our data demonstrate that these views may change, so patients and families need to be reassured that an advance care plan will not be inflexible. Most professionals and patients agree that such discussions should take place around the time of diagnosis of a life-threatening illness and that this should be a process rather than a single event. If staff who are having these discussions with patients recorded in some detail (with the patient’s permission) the patient’s rationale for making changes to their advance care plan, and what importance they attach to place of death, policy decisions about where beds should be made available and what care should be provided could be based on what people want as they reach the end of their lives rather than on the results of population surveys which may not be so illuminating. Understandably many health professionals fi nd this subject difficult to raise with patients,4 and some patients do not want to discuss end of life concerns, so clinicians must be guided by the patient as to the timing, pace and content of talk about end of life care. 25 A recent survey found that 78% of the general public think that it is part of a health professional’s job to talk to them about where they would like to be cared for when dying and where they would like to die, 24 so perhaps death is gradually becoming less of a taboo subject. 26 If advance care planning becomes accepted as part of good end of life care, patients may be more likely to receive the care they would prefer and those planning services may be better informed. Contributors AC and JE conducted the interviews. AC and JE analysed the data. AC drafted the paper; AC, JE, SP and AMcP contributed to the subsequent drafts and final version. AC and JE will act as guarantors for the work. Acknowledgements The authors thank the people who took part in the interviews, their multidisciplinary advisory panel, and all those who helped them to recruit. They also thank Andrew Herxheimer and Sue Ziebland, for their useful comments on an earlier draft of this paper. Funding The actor Hugh Grant funded the work through the DIPEx charity. The views expressed do not necessarily reflect those of the funder. Competing interests None. Provenance and peer review Not commissioned; internally peer reviewed. Ethics approval Ethics committee approval was given for this study by the Berkshire Research Ethics Committee, 09/H0505/66. All participants gave informed consent before taking part and have given written consent to their interview data being included in publications.
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Patients with pancreatic cancer and relatives talk about preferred place of death and what influenced their preferences: a qualitative study Alison Chapple, Julie Evans, Ann McPherson and Sheila Payne BMJ Support Palliat Care 2011 1: 291-295 originally published online August 25, 2011
doi: 10.1136/bmjspcare-2011-000091 Updated information and services can be found at: http://spcare.bmj.com/content/1/3/291
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Research
Patients with pancreatic cancer and relatives talk about preferred place of death and what influenced their preferences: a qualitative study Alison Chapple,1 Julie Evans,1 Ann McPherson,1 Sheila Payne2 1Department
of Primary Health Care, University of Oxford, Oxford, UK 2International Observatory on End of Life Care, Lancaster University, Lancaster, UK Correspondence to Alison Chapple, Department of Primary Health Care, University of Oxford, 2nd Floor, 23–38 Hythe Bridge Street, Oxford OX1 2ET, UK; [email protected] Accepted 17 July 2011 Published Online First 25 August 2011
ABSTRACT Objective To explore reasons why people with pancreatic cancer, who are reaching the end of their lives, say they wish to die at home or elsewhere, and why preferences may change. Design Qualitative study using semistructured interviews followed by thematic analysis. Setting Respondents recruited from different parts of the UK during 2009/2010. Participants 16 people with experience of pancreatic cancer (8 patients and 8 bereaved relatives) who discussed place of death in detail during an in-depth interview (from a total sample of 32 people with pancreatic cancer and eight relatives of others who had died of this disease). Results People’s preferences were affected by their perceptions and previous experiences of care available at home, in a hospice or hospital. Preferences were also shaped by fears about possible loss of dignity, or fears of becoming a burden. Some people thought that a home death might leave bad memories for other members of the family. People with pancreatic cancer and their relatives were aware that preferences might change (or had changed) as death approached. Conclusions The National Health Service End of Life Care Strategy for England seeks to meet the needs of people who are dying and promotes better support for home deaths. More information is needed about why patients hold different views about place of care and place of death, why patients’ preferences change and what importance patients attach to place of death. Health professionals should bear this in mind if the subject is raised during advance care planning.
INTRODUCTION In 2000 a systematic literature review of the preferences of patients with cancer for end of life care and death concluded that home was the most common preference, with inpatient hospice care as second preference.1 Since then research has found that in the UK end of life preferences vary across different ethnic groups, 2 regions, 3 and may change over time as illness progresses.4–6 Research using death certificate data has also found that a minority of people dying from cancer die at home (22.1% in England), although it seems that most people want to do so.7 In parts of England, such as the South East, people are twice as likely to die in hospital (47%) than at home (23%).8 Factors affecting place of death include the treatment available in hospital, personal preferences, availability of palliative care services and family support, resources (such as how many hospice beds BMJ Supportive & Palliative Care 2011;1:291–295. doi:10.1136/bmjspcare-2011-000091
are available) and proximity to a hospice or hospital.9 10 Although studies have shown that most people want to die at home, not much is known about why people prefer a home, hospice or hospital death, the importance of place of death to patients, why patients change their minds about where they wish to die and how decisions are made. In-depth qualitative studies, such as that conducted by Thomas et al, 3 with patients who are dying, and with their carers, are best suited to answer these questions, but such studies are rare, probably because any research with dying patients is difficult and raises ethical dilemmas.4 Thomas et al 3 found that many factors shaped patient and carer preference for place of death. None of their participants expressed a wish to die in hospital, but wanted either a home or hospice death. The authors suggest that the strong pro-hospice stance may be partly due to biases in the sample. Community specialist care nurses recruited most of the patients for interview, and most patients had had some contact with one of two hospices in the North West of England. With this in mind we decided to explore the preferred place of death in a sample of patients with pancreatic cancer (and relatives of people who had already died of the disease), from all over the UK, recruited in different ways. Most patients with this cancer die within a year of diagnosis,11 so their views about place of death are a particularly pressing matter. The aim of our study was to explore why some of these patients reported a preference for end of life care and death either at home, hospice, nursing home or hospital, how strongly they felt about this, and how they described making decisions.
METHODS In 2009/2010 we conducted a qualitative interview study using semistructured interviews. With approval from the Berkshire Research Ethics Committee (09/H0505/66), we invited people to join in a study of their experience of pancreatic cancer. Volunteer packs were distributed by five consultants and a nurse, who worked in different parts of the UK. We also distributed packs via Pancreatic Cancer UK, the Pancreatic Cancer Research Fund and general practitioners. Packs included an information sheet and reply slip. Those wanting to know more about the study contacted the research team. Some people were recruited by an advertisement in a free London newspaper, personal contact, or the snowball 291
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Research method. Four people contacted the research team via the internet after hearing about the project on television or radio. Eight of the people who responded to the advertisement and to the television and radio programmes were relatives of people who had died of pancreatic cancer. We included them in the sample so that we could capture their views about the end of life experiences that the other 32 participants could not describe. We aimed for a maximum variation sample of 40 people from different social backgrounds and ethnic groups, and different parts of the UK (see table 1). One of two of the authors (AC and JE) interviewed people at their chosen place (usually his or her home) for between 40 min and 2 h. Having signed a consent form people were asked to talk about their experience of cancer; they could pause, or stop the interview at any time. In the fi rst, narrative section of the interview, respondents were asked to relate, in their own words what had happened to them from the time when they fi rst noticed symptoms. When the narrative was fi nished, a semistructured interview guide was used to explore any relevant issues that had not already been covered. This included the question, ‘How do you view the future?’ Most of the patients we interviewed were recovering from surgery, having chemotherapy or taking part in a clinical trial. They seemed hopeful that they would survive for at least a number of years, so even though the prognosis for people with pancreatic cancer is grim it is understandable that these people did not bring up the subject of death. Only nine of the patients made it clear that they knew they were dying and that there was no pretence or hiding. Glaser and Strauss12 called this ‘open awareness’. Eight of this group discussed place of death. They were aged 44–81 and had been diagnosed between 2004 and 2009. They were all white British except for one man who described himself as black British. The eight relatives of those who had died who discussed place of death were aged 43–69 and were all white British except for one Pakistani woman. The interviews were all audio recorded, fully transcribed, checked and then returned to the participants, so that they could read the text (if they wished) and remove or clarify sections if necessary. Pseudonyms are used in this paper. Table 1 Sociodemographic characteristics of the entire sample Characteristics Age at interview 35–44 45–54 55–64 65–74 75–84 Gender Men Women Occupation (or previous occupation if retired) Professional Other non-manual Skilled manual Other, eg, housewife Ethnic group White British Indian Pakistani Black British Year of diagnosis 1995–1999 2000–2006 2007–2010
292
People with pancreatic cancer
Relatives of deceased patients with pancreatic cancer
3 7 9 10 3
2 4 0 2 0
17 15
5 3
15 10 5 2
6 2 0 0
30 1
7
1
1 0
1 5 26
1 5 2
The authors read and re-read the data, constructed a coding frame, coded the data and then examined themes across the whole dataset, as well as in the context of each person’s interview. A qualitative interpretive approach was taken, combining thematic analysis with constant comparison.13 14 QSR N6 (a qualitative data-indexing package) facilitated the analysis.15 Two of the authors read the relevant QSR N6 reports and discussed coding and interpretation of results. Further analyses and extracts from the interviews can be found on http://www. healthtalkonline.org/Cancer/Pancreatic_Cancer
RESULTS People described various factors that affected their preferences and changing views about end of life care and where they wanted to die, including experiences and perceptions of care available at home, in hospital, nursing home or hospice, and fears of negative associations with place of death.
Care available at home Diana, who had an inoperable tumour, had declined chemotherapy, and at the time of the interview was having palliative care at home. She explained why home would be the best place to die: I: Do you want to die here at home? R: Yes, I do. I don’t want to go into a hospice. I: Why do you say that? R: Because I’ve got more comforts here at home. My husband is here to do more things for me. He’s a oneto-one nurse, whereas with the best will in the world, you don’t get that anywhere, not even in the hospice. So it’s more of a comfort at home, and having all my things around me as well. This is where I want to be, and my family. Other research has found that patients want to die quietly and with dignity, 3 16 and some of the people we interviewed said they wanted to die at home but only if they could do so with dignity and without burdening others. They knew that their preferences might change as death approached, depending on circumstances. Ava, for example, wanted to die at home among her family and familiar things. She hoped it would be a ‘nice experience’ for her family, ‘rather like a home birth’. However, she recognised that a home death might not be possible: I’d like to die at home as long as I could get enough caring and nursing (. . .) just trying to maintain some sort of dignity; and I think it can be very difficult for people at home unless they get a lot of support (. . .). I wouldn’t want to go to hospital. But I can see that if I got an obstruction and was vomiting all the time, and they couldn’t manage it here, I might have to go to hospital. Some of the relatives we interviewed explained that with the help of palliative care nurses, such as Marie Curie nurses, a dignified home death had been achieved.
Experience of hospital care Aiden said that his wife, Marie, died peacefully in hospital. He recalled that she had had ‘total trust’ in the hospital, and he thought she had been happy to die there: All the support is there [in hospital], and she knew people in the hospital and they knew her, so it was familiar faces BMJ Supportive & Palliative Care 2011;1:291–295. doi:10.1136/bmjspcare-2011-000091
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Research (…) I think implicitly because we felt so supported by the hospital there was never any strong pressure to say, “Oh I really want to die at home” (. . .) She just knew that the hospital was able to cope with pain, pain control and those sorts of things. After visiting a hospice Theresa’s mother had said she wished to die there. However, her health deteriorated suddenly and Theresa and the family decided that it was not in her mother’s best interest to move her. They were satisfied with her hospital care: Her illness deteriorated at that point so quickly that they were making plans to move her [from hospital to hospice]. But the concern was that the move in the ambulance, which would have been at least an hour and a half, would have been really, really disruptive. We were lucky enough that she was in a private room, she wasn’t on a ward. If she’d had been on a ward I think we’d have said, “We’ll take her to the hospice,” but she was in a private room that was quiet, and it was very good nursing care, and we could stay there, so we didn’t feel an enormous need.
Perceptions and experience of hospice care Some people had visited their local hospice. Doris, for example, had liked the ‘very friendly’, ‘comforting’ and ‘very cheerful’ atmosphere. She said she “wouldn’t mind being in there in the least, to be looked after, if it came to that in the end.” When Sarita’s mother was dying she wanted to leave hospital because she did not feel safe or that she was getting enough care and attention. Sarita said that her mother had already been in the hospice and liked it very much. When the hospital staff told Sarita that her mother could either go home or to a hospice she discussed it with her: I said to my mum, “They’re going to let you out of hospital, you know, you can either go to the hospice or you can come home.” We didn’t tell her that she was going to die at this stage. And my mother said to me, “You know, I want to go to the hospice.” Sarita reported that her mother died peacefully in the hospice. Sarita explained why she felt that it had been the best place for her mother’s death: They were so respectful in terms of our sort of traditions. It was just, it was like the perfect place for her to have been, you know. And I felt that coming there she felt that she’d sort of come home. And then she was sort of ready to go within those surroundings. Doug’s wife was at home until a week before she died. He said that the move to the hospice was ‘completely the right move’. Frances was vomiting and needed more help with pain control. She was in a lovely family room where he and their boys could stay the night. He explained why she had been glad to be in the hospice: R: We had quite a nice time there [the hospice] actually (…) I was no longer worrying about being on top of any medicine that she required or painkillers. (…) I had more time. Frances was more comfortable. So, to say we had a nice time sounds really daft. But it was a … a good time [crying] BMJ Supportive & Palliative Care 2011;1:291–295. doi:10.1136/bmjspcare-2011-000091
Fears of negative associations with place of death Some people expressed the fear that if they died at home family members would forever associate the home with death and that this might be unbearable. Stuart, for example, returned from work overseas, knowing that he might die, so he and his wife rented a house rather than return to their own home: We’re living in rented accommodation at the moment (. . .). We could have moved back into our old home that we still own, that was rented out, but we decided not to do that because we felt that it would be pretty tough, if I died in that home, for my wife, either to live in a place where her husband had died, or if she had to sell up because she couldn’t bear thinking about living in that place. Laura was likewise determined not to die in her own home. She wanted to die in the local hospice but said that a ‘little corner of the hospital’ would be better than home: R: I don’t want to stay here [home]. I do not want to die here. I: Where would you like to go? R: Preferably in a hospice. There’s a really nice one in the next town. I: Have you been to see it? R: Yes, (…) It’s a nice place. It was very nice and calming. (. . .) But they’ve only got ten beds, so it’s not a certainty that you are going to get there, and I said, “I don’t care if I’m in a little corner of the hospital as long as I’m not here [at home]”. I do not want to be here (. . .) I do not want the kids walking in and saying, “Oh that’s where my Mum died,” or like my husband getting in bed and thinking, “Oh my wife died in here with me” (. . .) I: Do you think the care that you’ll get would be better in the hospice than anywhere else? R: I don’t think there’ll be much difference really, because we’ve got a really nice hospital. We’ve got a really nice hospital here and in the next town. These two examples show the wish to ‘protect’ surviving members. It is notable that Laura repeats her wish to die away from home four times in just a few minutes. Perhaps she feared an undignified, painful death. Toby also thought that if he died at home his relatives might fi nd this difficult because of unpleasant associations. He wanted to die at home but he said that nearer the time would discuss it with the family: I will call the whole family in, my brother, sisters and their partners and my nieces and nephews as well (. . .) I’ve got to talk about it [place of death] because do I really want the kids to be left in the house where their Dad, their loved one, has died? So that’s something we are going to discuss, as a family.
DISCUSSION It is often difficult to fi nd patients who are terminally ill who want to discuss ‘place of death’.17 In our study of 32 people with pancreatic cancer, eight of the nine people who had ‘open awareness’12 and who knew they were dying discussed the issue. Others did not raise the subject. Perhaps, as we noted earlier, they still hoped that in their case treatment would lead to remission. Perhaps they had not had the opportunity to take part in advance care planning (see below),18 or perhaps they 293
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Research deliberately avoided thinking about the subject. However the views of the eight who discussed the subject and the accounts given by eight carers of different individuals, illustrate the complexities and the shifting nature of people’s preferences for place of care and place of death, and why people may change their minds. Some people gave good reasons for preferring to die at home, but others said that a hospice, hospital or nursing home might be a better place for them to die. We interviewed people from across the UK, so preferences were not shaped by close proximity to a particular hospice or hospital. We also recruited in different ways, not relying heavily on community specialist palliative care nurses, which may help to explain why the people we interviewed were less ‘antihospital’ than those interviewed by Thomas et al. 3 Our study also helps to illustrate how some people make decisions. Toby, for example, said that as death approached he would gather his family together to discuss what would be best for everyone. Thomas et al 3 found that some people said that they would be reluctant to stay at home if they became a burden on the family owing to incontinence or other physical problems. We found this too, but we also found that some people were worried that if they died at home their relatives would fi nd this difficult because home would always be associated with death. It is interesting to note that when Seymour et al2 interviewed white and Chinese older adults living in the UK they found that while the white respondents favoured death in a hospice, Chinese old people expressed a preference for death in hospital, linking this to the availability of good nursing care, the possibility of maintaining hope, and concern about the possible ‘contamination’ of the home by death. Although the Chinese older people were not patients, and were not facing death at the time of the interview, these fi ndings are still relevant to our study. Others have also found that place of death can have symbolic meaning for people with cancer or other illnesses.19 20 Our study has limitations. When people stated preferences it was not always clear if they were talking about place of care or place of death. Sarita, for example, said that her mother wanted to go to the hospice, but that she had not been explicitly told she was going there to die. However, it is often hard to separate the two. It was a relatively small study, of mainly middle class white people. If we had interviewed more people from minority ethnic groups, who may have different cultural practices around death, and more unskilled manual workers we might have found additional reasons for preferred place of death. People on lower incomes may have fewer options. A longitudinal study could have told us more about how preferences changed over time, but this might have been hard to achieve, given the nature of the illness. Also the views of the bereaved relatives we interviewed may have changed since the deaths. They might have reconstructed events to minimise any feelings of failure about what happened or to leave themselves with more contented memories. The National Health Service End of Life Care Strategy tries to address the needs of the increasing number of people dying in England. 21 22 Current policy is to enable more home deaths, but as Costantini 23 argues, we need to look “more in depth at what we know about the ‘demand’ of most people to die at home.” Recent guidance from The General Medical Council urges health professionals to give patients the opportunity to take part in advance care planning. 24 This is a voluntary process of discussion and review to help an individual, who has capacity, to anticipate how their condition may affect them in future and, if they wish, set on record, choices about their 294
care and treatment. Our data demonstrate that these views may change, so patients and families need to be reassured that an advance care plan will not be inflexible. Most professionals and patients agree that such discussions should take place around the time of diagnosis of a life-threatening illness and that this should be a process rather than a single event. If staff who are having these discussions with patients recorded in some detail (with the patient’s permission) the patient’s rationale for making changes to their advance care plan, and what importance they attach to place of death, policy decisions about where beds should be made available and what care should be provided could be based on what people want as they reach the end of their lives rather than on the results of population surveys which may not be so illuminating. Understandably many health professionals fi nd this subject difficult to raise with patients,4 and some patients do not want to discuss end of life concerns, so clinicians must be guided by the patient as to the timing, pace and content of talk about end of life care. 25 A recent survey found that 78% of the general public think that it is part of a health professional’s job to talk to them about where they would like to be cared for when dying and where they would like to die, 24 so perhaps death is gradually becoming less of a taboo subject. 26 If advance care planning becomes accepted as part of good end of life care, patients may be more likely to receive the care they would prefer and those planning services may be better informed. Contributors AC and JE conducted the interviews. AC and JE analysed the data. AC drafted the paper; AC, JE, SP and AMcP contributed to the subsequent drafts and final version. AC and JE will act as guarantors for the work. Acknowledgements The authors thank the people who took part in the interviews, their multidisciplinary advisory panel, and all those who helped them to recruit. They also thank Andrew Herxheimer and Sue Ziebland, for their useful comments on an earlier draft of this paper. Funding The actor Hugh Grant funded the work through the DIPEx charity. The views expressed do not necessarily reflect those of the funder. Competing interests None. Provenance and peer review Not commissioned; internally peer reviewed. Ethics approval Ethics committee approval was given for this study by the Berkshire Research Ethics Committee, 09/H0505/66. All participants gave informed consent before taking part and have given written consent to their interview data being included in publications.
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Patients with pancreatic cancer and relatives talk about preferred place of death and what influenced their preferences: a qualitative study Alison Chapple, Julie Evans, Ann McPherson and Sheila Payne BMJ Support Palliat Care 2011 1: 291-295 originally published online August 25, 2011
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