582143 research-article2015
PMJ0010.1177/0269216315582143Palliative MedicineTomlinson et al.
Original Article
Euthanasia and physician-assisted suicide in dementia: A qualitative study of the views of former dementia carers
Palliative Medicine 1–7 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315582143 pmj.sagepub.com
Emily Tomlinson1, Aimee Spector2, Shirley Nurock3 and Joshua Stott2
Abstract Background: Despite media and academic interest on assisted dying in dementia, little is known of the views of those directly affected. Aim: This study explored the views of former carers on assisted dying in dementia. Design: This was a qualitative study using thematic analysis. Setting/participants: A total of 16 former carers of people with dementia were recruited through national dementia charities and participated in semi-structured interviews. Results: While many supported the individual’s right to die, the complexity of assisted dying in dementia was emphasized. Existential, physical, psychological and psychosocial aspects of suffering were identified as potential reasons to desire an assisted death. Most believed it would help to talk with a trained health professional if contemplating an assisted death. Conclusion: Health workers should be mindful of the holistic experience of dementia at the end of life. The psychological and existential aspects of suffering should be addressed, as well as relief of physical pain. Further research is required.
Keywords Dementia, euthanasia, physician-assisted suicide, carers
What is already known about the topic? •• Surveys suggest that around 50% of dementia carers are supportive of assisted dying in dementia. •• Wider research into views on assisted dying for other terminal conditions (not dementia) suggests that views are complex and affected by a multiplicity of factors. •• In-depth research into the views of former dementia carers on assisted dying has not been completed in the United Kingdom. What this paper adds? •• An understanding of former dementia carers’ views on assisted dying in dementia. •• The potential reasons for and against an assisted death, from the perspective of former carers. •• Former dementia carers’ views on talking with health-care professionals about assisted dying. Implications for theory, practice and policy •• Suffering, which can occur for a multiplicity of reasons, is the main reason to want an assisted death. •• Views on assisted dying are complex and further larger scale research is required into this area. •• Most carers believed that it would be helpful to access support from trained health-care professionals specialized in endof-life care when considering an assisted death.
1Enfield
Integrated Learning Disabilities Service, Barnet, Enfield and Haringey NHS, London, UK 2Research Department of Clinical, Educational and Health Psychology, University College London, London, UK 3Alzheimer’s Society Research Network and family carer, London, UK
Corresponding author: Joshua Stott, Research Department of Clinical, Educational and Health Psychology, University College London, London WC1E 7HB, UK. Email: [email protected]
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Introduction One in three people over 65 will die with dementia,1 and this will rise as dementia prevalence increases.2 End-oflife care in dementia is poor and access to palliative care inequitable. However, recent research suggests that older people would rather control the circumstances around their death, than be dependent on others.3,4 Assisted dying describes (1) voluntary euthanasia, in which ‘a doctor intentionally kills a person by the administration of drugs’, and (2) physician-assisted suicide (PAS), whereby ‘a doctor helps a person to commit suicide by providing drugs for self-administration’.5 Hendry et al.,6 found that approximately two-thirds of surveyed participants considered this an option for the terminally ill. Less is known about views on assisted dying for dementia, in particular the opinions of carers who often act as proxies for medical decisions.7 Current debates occur in the context of significant social change, including an expanding elderly population, budget cuts to health care and medical advances in life-sustaining treatments.8 Some have raised concerns that people with dementia may be perceived to have a ‘duty to die’ before becoming incompetent.9,10 Research suggests that over 50% of dementia carers support assisted dying.11–13 However, this is based on surveys completed in the Netherlands where assisted dying is legal and the United States where it is legal in certain states. Research into patient and caregiver views for other health conditions suggests that views are complex and influenced by a myriad of factors including physical, psychosocial and existential concerns.8,14–23 Although assisted dying is illegal in the United Kingdom and active requests are rare, understanding the complexity of caregiver views in this country is important to contribute to debates around its legalization.
Aims To explore former carers’ views towards assisted dying in dementia and address the following three questions: 1. How do carers view assisted dying in dementia? 2. What influences their views towards assisted dying? 3. How do carers view talking with health professionals about assisted dying?
Method
decided to interview bereaved carers so that they could reflect on their entire experience of dementia while discussing views on assisted dying.
Procedure Ethical approval was obtained from the University College London (UCL) Research Ethics Committee. Data collection began in February 2012 and ended in January 2013. After initial telephone contact and obtaining written informed consent, the researcher collected demographic data and conducted interviews in a place of the participant’s choice. These lasted an average of 1 h and were audio-recorded. Recruitment ended when authors agreed that data saturation was reached.
Interview schedule The semi-structured interview addressed the participant’s relationship to the person they cared for, their experience of caring, views on assisted dying in dementia and whether this was something they had considered for the person or would want for themselves with dementia. The researcher acknowledged that assisted dying is illegal in the United Kingdom and asked whether participants would consider this, if it were a legal option. Participants were prompted to reflect on how experiences of dementia and caring influenced views. The schedule was based on assisted dying literature and developed jointly by the authors, who include a former carer (S.N.).
Analysis Interviews were transcribed verbatim and analysed using Braun and Clarke24 six phases of thematic analysis. The analysis was guided by a contextualist approach. Credibility checks25 included a colleague auditing various stages of the analysis. Key themes were developed jointly by two authors (E.T. and J.S.). Participants were sent a summary of the analysis, which all validated as an accurate reflection of their views.
Researcher perspective The researcher (E.T.) was a trainee psychologist interested in end-of-life care in dementia. She did not know any participants prior to the research.
Participants
Results
A total of 16 participants were recruited from two UK dementia charities using snowball sampling and email adverts. Inclusion criteria were (1) adult former carer to a family member with dementia who (2) had been bereaved of the person they cared for between 1 and 5 years. We
A total of 19 subthemes were identified and clustered into 5 key themes; 1 and 2 delineate participant’s views on assisted dying in dementia, 3 and 4 describe influences on views and 5 depicts opinions on talking with a health professional about assisted dying.
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Tomlinson et al. Table 1. Participant information. Participant
Gender
Age (years)
Ethnicity
Religion
Person they cared for
P1 P2 P3 P4 P5 P6 P7 P8 P9 P10 P11 P12 P13 P14 P15 P16
Male Male Female Female Female Male Female Female Female Female Female Female Female Female Female Female
76 77 74 57 53 48 81 69 69 75 71 69 52 80 65 71
South Asian White British White British White British White British White European White British White British White British White British White European White British White British White British White British White British
Buddhist – practising Christian Agnostic Atheist Catholic – practising Catholic Catholic – practising Agnostic Jewish – practising Christian –practising Agnostic Christian Christian Christian –practising Christian Agnostic
Wife Wife Husband Mother Father Mother Husband Husband Father Husband Mother Husband Mother Husband Husband Mother
Contextual information Table 1 provides participant demographic information. All but one were involved in decisions to withhold life-sustaining treatment. Nine had thought about assisted dying while caring but none recalled their relative mentioning this. Most felt they had received adequate support and that their loved one received reasonable care. Theme 1: right to die. Typically, participants believed that it is the individual’s right to determine their own death. Understanding the decision. Most would understand whether a person with dementia decided on an assisted death, even if they did not personally favour this: My views having been brought up a Catholic, I am against it. But on the other hand for people not brought up this way, I would absolutely completely understand they might decide to do it. (P7)
‘It’s a personal choice’. The individual with dementia was regarded as having the ultimate right to decide about his or her life and death: I think it is always very much up to the individual themselves. It is their body. (P9)
Wanting the option for self. Over half would want the option of an assisted death for themselves. They suggested having this option would bring comfort and control: I would want the ability to end it because that would give me some relaxation that if I got to the stage where I can’t bear it I can end it painlessly. You know say my goodbyes and go to sleep. (P16)
A minority would not want an assisted death with dementia for themselves. They reasoned that the experience of dementia was not as bad for the person as it is for those around them. Theme 2: ‘It’s complex’. While there was a general acceptance of the right to die, the need for caution and careful deliberation was emphasized. Theoretical dilemmas. Assisted dying was described as ‘complex’, raising numerous dilemmas. Some had experienced the decision to withhold life-sustaining treatment as euthanasia. Participants debated when an assisted death would be acceptable given dementia ‘affects each sufferer so differently’. Many felt uncomfortable with people with advanced dementia receiving an assisted death: The idea of bumping people off with an advanced dementia is not acceptable to people … and I am not sure it is acceptable to me. (P3)
But some were in favour: If they have got a dementia and they are into stage 3, I think basically it is almost cruel to keep them alive. (P2)
Most believed that assisted dying is clearer for diseases without cognitive impairment as the affected person is more likely to have capacity. Making the decision. Some participants said that even if assisted dying is a personal choice, the decision should be shared with family. Concerns were raised about the wider impact of an assisted death:
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Palliative Medicine You know it is not just the person that is killed, but their family and people that have witnessed it are affected. (P11)
There was unanimous agreement that people with dementia needed to have capacity when deciding and while receiving an assisted death. It was recognized this could mean people potentially having to opt for an assisted death at a stage where they do not necessarily want to die, to avoid reaching a later stage where they no longer want to live. All emphasized the need for safeguards to prevent the risks of abuse.
Some participants believed that carers experiencing considerable ‘strain’ might consider an assisted death for a relative; others strongly disagreed with this idea: Whilst most carers long for it to be over, they don’t think of killing their loved one. (P3)
‘Time to die’. Many participants reached a stage where they believed their relative had ‘suffered enough’ and they were ‘waiting for death’. Some described the difficulty of witnessing ‘pointless suffering’:
Theme 3: suffering. This encapsulates the main reasons participants offered for considering an assisted death.
… I thought this should not go on for much longer, so maybe I will put a pillow over his head. I used to sit there thinking shall I just put a pillow over his head. (P3)
‘Pain’. Most could understand whether a person experiencing extreme pain, which could not be relieved opted for an assisted death. As carers, all had felt responsible for protecting their relative from pain. Some perceived this responsibility to extend to helping them die:
Theme 4: problems with ending life. This theme describes the main reasons some participants would not consider assisted dying in dementia, either as a carer or person with dementia.
He would have taken it for granted that I would help him die if he was in pain. As much as he would take it for granted that I would make his meals or anything like that. (P3)
‘Still a person’. In contrast to the subtheme ‘disintegration’, several participants emphasized that their relative was ‘still a person’ and were distressed by suggestions their life was not worth living:
A minority disagreed with pain as a reason to want an assisted death, arguing that this could be relieved with medication. ‘Loss of pleasure’. Caring for a person who was ‘extremely unhappy’ could prompt thoughts about an assisted death for the patient: For as long as he enjoyed his food, you know enjoyed things then I would have carried on but when that was gone, there was no point. You don’t want to keep someone going who is beyond enjoying anything. (P10)
‘Disintegration’. The majority experienced their relative as disintegrating over the course of dementia. They expressed sorrow for their relative living through such loss: She was only bones, the wings had gone. She was literally just skin there was nothing there at all. She was like a skeleton and that was not fair. (P11)
‘Becoming a burden’. Participants believed the experience of becoming dependent on others, particularly if the person worried about becoming a burden, could lead to contemplation about assisted dying. They thought that people worried most about burdening their children: How would I react if somebody said, ‘Your children have got to care for you, we cannot provide a home, your children must cope’. I would be hard pressed actually not to go for assisted suicide. (P7)
The idea that he was not worth anything anymore made me very sad. He was still my dad. (P5)
‘It’s not all bad’. Several participants believed the experience of dementia was ‘not all bad’ for their relative. They spoke of ‘feared public perceptions of dementia’ which they believed were inaccurate. For them, having dementia was not a reason to want an assisted death and they were critical of public figures that had implied this: I thought it was terrible when Baroness Warnock said that anybody with dementia should be given euthanasia. I really felt like shooting her! (P15)
‘Will to live’. A few participants believed in the ‘will to live’; the strong desire to continue living, even while facing impending death. They believed this could lead people to change their minds on earlier decisions about assisted dying: Of course there is always this life sustaining thing within you and you want to go on living. (P15)
‘We can’t choose the way we die’. A minority viewed death as part of the process of life, which is to be accepted as opposed to controlled: I am reminded that anyone could die at any time and you cannot have a contract with death. You cannot contract it and say you will die at this time and here. (P11)
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Tomlinson et al. Although there was often a preference for a relative to have died sooner or in a different way, it was accepted that the death could not be intervened with:
actual experience of what you are going through. I think rather than speaking with a GP it would help to talk with an Admiral Nurse. (P6)
I wish she had a massive stroke or a heart attack and that would have been it … Unfortunately we can’t choose the way we die. (P13)
Although it should be noted that in countries where assisted dying is legal, the general practitioner (GP) is often a key person involved.
‘It was never mentioned’. A few participants said that because their relative ‘never mentioned’ (P7) assisted dying, they did not consider it for them. Reasons for the person not mentioning an assisted death were that they ‘enjoyed life too much’ or ‘battled hard for life’ or ‘would not be capable of the thought’ with dementia. ‘You don’t murder people’. Some participants said that assisted dying went against the principles of care, which are to ‘keep life going’. One likened assisted dying to ‘murder’. Concerns were also raised about the ‘risk of abuse’ should assisted dying be legalized for dementia: … the idea of a society not being able to afford all the people living as long as they are. And some other country, I could not think Britain would do it, saying, ‘Look when you reach 80, you have to have euthanasia’. (P7)
Discussion Summary of results Many participants (n = 13) supported the right to an assisted death with dementia. However, views were complex and raised several issues including (1) the need for capacity; (2) stringent safeguards; and (3) recognition of the impact an assisted death has on other people. While over half personally wanted the option of an assisted death, the majority felt unable to decide this for another person. Suffering through physical pain and psychosocial and existential factors were the main reasons to want an assisted death. If contemplating an assisted death, most believed it would help to talk with a health professional.
Interpretation of findings
‘Finding the right person’. Most believed that health professionals would ‘need training’ and should have a specialist focus on end-of-life care. Not every health professional was considered suitable for these conversations:
Complexity of assisted dying – autonomy versus the common good. The right to die is a powerful argument in the assisted dying debate. It draws on the principle of autonomy, which is highly valued in a democracy14 and it is therefore unsurprising that many supported the individual’s right to die. However, participants were clear that legalizing assisted dying for dementia was complex. Concerns were raised about mental capacity and whether a person would be able to decide at the point they wanted to die. Wider research that explores decision-making for life-sustaining treatments in dementia commonly identifies that these capacity issues and the consequent involvement of loved ones in decision-making make it challenging for people with dementia to make autonomous decisions.26,27 Therefore, decisions regarding assisted dying are clearer for other terminal conditions not affecting capacity.13 Many participants struggled with what is ‘right’ for the individual versus what would be the ‘common good’ for society. While most felt that individuals with dementia should have the right to decide their own death, many were concerned that legalizing assisted dying could impact overall dementia care: limiting interest in developing new treatments.6,28,29 Many grappled with what safeguards would need to be put into practice to ensure that assisted dying remained a choice for those with capacity and not something that vulnerable people felt coerced into.
I don’t think you can have that discussion with a medical practitioner or GP, because in my opinion they don’t have
Making the decision for oneself but not for others. Daskal et al.11 also found that dementia carers wanted the option
Theme 5: talking about assisted dying. This theme encapsulates participant’s views on talking with health professionals about assisted dying. ‘It helps to talk’. Many participants said ‘it helps to talk’ about experiences of caring, particularly if thoughts arise about assisted death. Health professionals were perceived as being able to offer ‘support’ and ‘information’ from which carers could ‘formulate opinions’ on assisted dying. However, the need for ‘careful conversations’ was stressed. ‘It would be very difficult’. The ‘stigma’ around assisted dying and its illegality in the United Kingdom meant that seeking support would feel ‘very difficult’. Some raised concerns about disclosing to health professionals due to fear of being judged unfit to care: I could not talk to anybody. I mean it is not the sort of thing you would normally … I would have been worried if I told them, they would have taken my mother’s care out of my control. (P8)
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of an assisted death for themselves with dementia. Johansen et al.18 propose that people construe the option of assisted dying as a type of insurance, so that if an illness becomes unbearable, they have a means to end their life, enabling the restoration of choice and control over an illness. Research suggests that carers may feel unable to decide for other people due to uncertainty around (1) being able to reliably administer an assisted death, (2) anxiety about prosecution and (3) concerns about the emotional burden.15,29 In this study, the majority of carers decided to withdraw life-sustaining treatment, implying that acts of omission are viewed differently to acts of commission. De Boer et al.29 highlight that people with dementia will often change opinions on their end-of-life treatment over the course of their illness. This presents an ethical challenge for caregivers as even if a decision is made when a person has capacity in the early stages of dementia, this may not reflect what they want at a later stage when possibilities to discuss their views are limited. Reasons for and against an assisted death. Physical pain as a potential reason for an assisted death is of particular importance in dementia as this is often poorly detected and can go untreated.30 As with previous research,17–19,21,31 participants did not identify depression as a reason for wanting an assisted death, despite depression rates of 20% in those requesting an assisted death.17 Many participants moved between reasons for and against an assisted death. To explain this, Johansen et al.18 suggested that people will fluctuate between certain psychological dimensions at the end of life including hope versus despair, certainty versus uncertainty and the will to live versus the wish to die. Indeed, participants shared numerous reasons not to consider an assisted death. Some described dementia as ‘not all bad’, a finding in line with findings of good quality of life in mild to moderate dementia.32 Themes around the ‘will to live’ and belief that we ‘cannot choose death’ have been found in previous research and can be linked with the idea of sanctity of life.18,33 Talking with health professionals. Participants highlighted the need for conversations around assisted dying to be held with skilled, trained clinicians who are mindful of their own beliefs around dying. Participants were particularly concerned about being pathologized as depressed.
Although the research perceived people to have openly shared their views, assisted dying is not legal in the United Kingdom and there is a risk of a social desirability bias due to this.
Future research This study did not explore whether dementia type influences views towards assisted dying. Although not independently raised as an issue, carer burden may be higher with certain dementias such as frontotemporal dementia38 and this could be explored in further research.
Conclusion Participants were clear that assisted dying in dementia is particularly complex because of the ethical issues relating to mental capacity and concerns that legalization may have negative ramifications for future developments in dementia care. However, despite this, several participants believed they would want the option of an assisted death with dementia. This could potentially mean an increase in assisted dying requests, as the current generation of carers age and possibly develop dementia. Health workers need to understand current issues in assisted dying in order to hold informed conversations with those contemplating this. The presence of depression should not be assumed, but carefully assessed and treated if present before there is consideration of assisted dying. Some participants contemplated an assisted death for the person they cared for. This suggests that thoughts of hastening death may be more common than anticipated among dementia caregivers. Unbearable pain has traditionally been understood as the main reason for wanting an assisted death; however, the existential and psychosocial dimensions of suffering are as important. Health professionals should provide support which targets the holistic experience of dementia. Declaration of conflicting interests The authors declare that there is no conflict of interest.
Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
References
Limitations The sample underrepresented carers from minority ethnic backgrounds. These groups may hold different attitudes towards care,34 have lower uptake of support services35 and are more likely to opt for life-sustaining treatment.36 Most participants were female and there are gender differences in assisted dying attitudes.37
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21. Mak YYW, Elwyn G and Finlay IG. Patients’ voices are needed in debates on euthanasia. BMJ 2003; 327: 213–215. 22. Suarez-Alamazor ME, Newman C, Hanson J, et al. Attitudes of terminally ill cancer patients about euthanasia and assisted suicide predominance of psychosocial determinants and beliefs over symptom distress and subsequent survival. J Clin Oncol 2002; 20: 2134–2141. 23. Wilson K, Scott J, Graham I, et al. Attitudes of terminally ill patients toward euthanasia and physician-assisted suicide. Arch Intern Med 2000; 160: 2454–2460. 24. Braun V and Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77–101. 25. Elliott R, Fischer CT and Rennie DL. Evolving guidelines for publication of qualitative research studies in psychology and related fields. Br J Clin Psychol 1999; 38: 215–229. 26. Dening K, Jones L and Sampson EL. Advance care planning for people with dementia: a review. Int Psychogeriatrics 2011; 23: 1535–1551. 27. King DA, Scott YH and Yeates C. Family matters: a social systems perspective on physician-assisted suicide and the older adult. Psychol Public Policy Law 2000; 6: 434–451. 28. Donchin A. Autonomy, interdependence, and assisted suicide: respecting boundaries/crossing lines. Bioethics 2000; 14: 187–204. 29. De Boer ME, Dröes R, Jonker C, et al. Advance directives for euthanasia in dementia: how do they resident care in Dutch nursing homes? Experiences of physicians and relatives. J Am Geriatr Soc 2011; 59: 989–996. 30. Pearlman RA, Hsu C, Starks H, et al. Motivations for physician-assisted suicide. J Gen Intern Med 2005; 20: 234–239. 31. Shega J, Hougham G, Stocking C, et al. Management of noncancer pain in community dwelling persons with dementia. J Am Geriatr Soc 2006; 54: 1892–1897. 32. Alzheimer’s Society. My life until the end: dying well with dementia. London: Alzheimer’s Society, 2012. 33. Kuuppelomäki M. Attitudes of cancer patients, their family members and health professionals toward active euthanasia. Eur J Cancer Care 2000; 9: 16–21. 34. Lawrence V, Murray J, Samsi K, et al. Attitudes and support needs of Black Caribbean, South Asian and White British carers in the UK. Br J Psychiatry 2008; 193: 240–246. 35. Daker-White G, Beattie AM, Gilliard J, et al. Minority ethnic groups in dementia care: a review of service needs, service provision and models of good practice. Aging Ment Health 2002; 6: 101–108. 36. Williams N, Dunford C, Knowles A, et al. Public attitudes to life sustaining treatment and euthanasia in dementia. Int J Geriatr Psychiatry 2007; 22: 1229–1234. 37. Cicirelli VG. Views of elderly people concerning end-oflife decisions. J Appl Gerontol 1998; 17: 186–204. 38. De Vugt ME, Riedijk SR, Aalten P, et al. Impact of behavioural problems on spousal caregivers: a comparison between Alzheimer’s disease and frontotemporal dementia. Dement Geriatr Cogn Disord 2006; 22: 35–41.
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PMJ0010.1177/0269216315582143Palliative MedicineTomlinson et al.
Original Article
Euthanasia and physician-assisted suicide in dementia: A qualitative study of the views of former dementia carers
Palliative Medicine 1–7 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315582143 pmj.sagepub.com
Emily Tomlinson1, Aimee Spector2, Shirley Nurock3 and Joshua Stott2
Abstract Background: Despite media and academic interest on assisted dying in dementia, little is known of the views of those directly affected. Aim: This study explored the views of former carers on assisted dying in dementia. Design: This was a qualitative study using thematic analysis. Setting/participants: A total of 16 former carers of people with dementia were recruited through national dementia charities and participated in semi-structured interviews. Results: While many supported the individual’s right to die, the complexity of assisted dying in dementia was emphasized. Existential, physical, psychological and psychosocial aspects of suffering were identified as potential reasons to desire an assisted death. Most believed it would help to talk with a trained health professional if contemplating an assisted death. Conclusion: Health workers should be mindful of the holistic experience of dementia at the end of life. The psychological and existential aspects of suffering should be addressed, as well as relief of physical pain. Further research is required.
Keywords Dementia, euthanasia, physician-assisted suicide, carers
What is already known about the topic? •• Surveys suggest that around 50% of dementia carers are supportive of assisted dying in dementia. •• Wider research into views on assisted dying for other terminal conditions (not dementia) suggests that views are complex and affected by a multiplicity of factors. •• In-depth research into the views of former dementia carers on assisted dying has not been completed in the United Kingdom. What this paper adds? •• An understanding of former dementia carers’ views on assisted dying in dementia. •• The potential reasons for and against an assisted death, from the perspective of former carers. •• Former dementia carers’ views on talking with health-care professionals about assisted dying. Implications for theory, practice and policy •• Suffering, which can occur for a multiplicity of reasons, is the main reason to want an assisted death. •• Views on assisted dying are complex and further larger scale research is required into this area. •• Most carers believed that it would be helpful to access support from trained health-care professionals specialized in endof-life care when considering an assisted death.
1Enfield
Integrated Learning Disabilities Service, Barnet, Enfield and Haringey NHS, London, UK 2Research Department of Clinical, Educational and Health Psychology, University College London, London, UK 3Alzheimer’s Society Research Network and family carer, London, UK
Corresponding author: Joshua Stott, Research Department of Clinical, Educational and Health Psychology, University College London, London WC1E 7HB, UK. Email: [email protected]
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Introduction One in three people over 65 will die with dementia,1 and this will rise as dementia prevalence increases.2 End-oflife care in dementia is poor and access to palliative care inequitable. However, recent research suggests that older people would rather control the circumstances around their death, than be dependent on others.3,4 Assisted dying describes (1) voluntary euthanasia, in which ‘a doctor intentionally kills a person by the administration of drugs’, and (2) physician-assisted suicide (PAS), whereby ‘a doctor helps a person to commit suicide by providing drugs for self-administration’.5 Hendry et al.,6 found that approximately two-thirds of surveyed participants considered this an option for the terminally ill. Less is known about views on assisted dying for dementia, in particular the opinions of carers who often act as proxies for medical decisions.7 Current debates occur in the context of significant social change, including an expanding elderly population, budget cuts to health care and medical advances in life-sustaining treatments.8 Some have raised concerns that people with dementia may be perceived to have a ‘duty to die’ before becoming incompetent.9,10 Research suggests that over 50% of dementia carers support assisted dying.11–13 However, this is based on surveys completed in the Netherlands where assisted dying is legal and the United States where it is legal in certain states. Research into patient and caregiver views for other health conditions suggests that views are complex and influenced by a myriad of factors including physical, psychosocial and existential concerns.8,14–23 Although assisted dying is illegal in the United Kingdom and active requests are rare, understanding the complexity of caregiver views in this country is important to contribute to debates around its legalization.
Aims To explore former carers’ views towards assisted dying in dementia and address the following three questions: 1. How do carers view assisted dying in dementia? 2. What influences their views towards assisted dying? 3. How do carers view talking with health professionals about assisted dying?
Method
decided to interview bereaved carers so that they could reflect on their entire experience of dementia while discussing views on assisted dying.
Procedure Ethical approval was obtained from the University College London (UCL) Research Ethics Committee. Data collection began in February 2012 and ended in January 2013. After initial telephone contact and obtaining written informed consent, the researcher collected demographic data and conducted interviews in a place of the participant’s choice. These lasted an average of 1 h and were audio-recorded. Recruitment ended when authors agreed that data saturation was reached.
Interview schedule The semi-structured interview addressed the participant’s relationship to the person they cared for, their experience of caring, views on assisted dying in dementia and whether this was something they had considered for the person or would want for themselves with dementia. The researcher acknowledged that assisted dying is illegal in the United Kingdom and asked whether participants would consider this, if it were a legal option. Participants were prompted to reflect on how experiences of dementia and caring influenced views. The schedule was based on assisted dying literature and developed jointly by the authors, who include a former carer (S.N.).
Analysis Interviews were transcribed verbatim and analysed using Braun and Clarke24 six phases of thematic analysis. The analysis was guided by a contextualist approach. Credibility checks25 included a colleague auditing various stages of the analysis. Key themes were developed jointly by two authors (E.T. and J.S.). Participants were sent a summary of the analysis, which all validated as an accurate reflection of their views.
Researcher perspective The researcher (E.T.) was a trainee psychologist interested in end-of-life care in dementia. She did not know any participants prior to the research.
Participants
Results
A total of 16 participants were recruited from two UK dementia charities using snowball sampling and email adverts. Inclusion criteria were (1) adult former carer to a family member with dementia who (2) had been bereaved of the person they cared for between 1 and 5 years. We
A total of 19 subthemes were identified and clustered into 5 key themes; 1 and 2 delineate participant’s views on assisted dying in dementia, 3 and 4 describe influences on views and 5 depicts opinions on talking with a health professional about assisted dying.
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Tomlinson et al. Table 1. Participant information. Participant
Gender
Age (years)
Ethnicity
Religion
Person they cared for
P1 P2 P3 P4 P5 P6 P7 P8 P9 P10 P11 P12 P13 P14 P15 P16
Male Male Female Female Female Male Female Female Female Female Female Female Female Female Female Female
76 77 74 57 53 48 81 69 69 75 71 69 52 80 65 71
South Asian White British White British White British White British White European White British White British White British White British White European White British White British White British White British White British
Buddhist – practising Christian Agnostic Atheist Catholic – practising Catholic Catholic – practising Agnostic Jewish – practising Christian –practising Agnostic Christian Christian Christian –practising Christian Agnostic
Wife Wife Husband Mother Father Mother Husband Husband Father Husband Mother Husband Mother Husband Husband Mother
Contextual information Table 1 provides participant demographic information. All but one were involved in decisions to withhold life-sustaining treatment. Nine had thought about assisted dying while caring but none recalled their relative mentioning this. Most felt they had received adequate support and that their loved one received reasonable care. Theme 1: right to die. Typically, participants believed that it is the individual’s right to determine their own death. Understanding the decision. Most would understand whether a person with dementia decided on an assisted death, even if they did not personally favour this: My views having been brought up a Catholic, I am against it. But on the other hand for people not brought up this way, I would absolutely completely understand they might decide to do it. (P7)
‘It’s a personal choice’. The individual with dementia was regarded as having the ultimate right to decide about his or her life and death: I think it is always very much up to the individual themselves. It is their body. (P9)
Wanting the option for self. Over half would want the option of an assisted death for themselves. They suggested having this option would bring comfort and control: I would want the ability to end it because that would give me some relaxation that if I got to the stage where I can’t bear it I can end it painlessly. You know say my goodbyes and go to sleep. (P16)
A minority would not want an assisted death with dementia for themselves. They reasoned that the experience of dementia was not as bad for the person as it is for those around them. Theme 2: ‘It’s complex’. While there was a general acceptance of the right to die, the need for caution and careful deliberation was emphasized. Theoretical dilemmas. Assisted dying was described as ‘complex’, raising numerous dilemmas. Some had experienced the decision to withhold life-sustaining treatment as euthanasia. Participants debated when an assisted death would be acceptable given dementia ‘affects each sufferer so differently’. Many felt uncomfortable with people with advanced dementia receiving an assisted death: The idea of bumping people off with an advanced dementia is not acceptable to people … and I am not sure it is acceptable to me. (P3)
But some were in favour: If they have got a dementia and they are into stage 3, I think basically it is almost cruel to keep them alive. (P2)
Most believed that assisted dying is clearer for diseases without cognitive impairment as the affected person is more likely to have capacity. Making the decision. Some participants said that even if assisted dying is a personal choice, the decision should be shared with family. Concerns were raised about the wider impact of an assisted death:
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Palliative Medicine You know it is not just the person that is killed, but their family and people that have witnessed it are affected. (P11)
There was unanimous agreement that people with dementia needed to have capacity when deciding and while receiving an assisted death. It was recognized this could mean people potentially having to opt for an assisted death at a stage where they do not necessarily want to die, to avoid reaching a later stage where they no longer want to live. All emphasized the need for safeguards to prevent the risks of abuse.
Some participants believed that carers experiencing considerable ‘strain’ might consider an assisted death for a relative; others strongly disagreed with this idea: Whilst most carers long for it to be over, they don’t think of killing their loved one. (P3)
‘Time to die’. Many participants reached a stage where they believed their relative had ‘suffered enough’ and they were ‘waiting for death’. Some described the difficulty of witnessing ‘pointless suffering’:
Theme 3: suffering. This encapsulates the main reasons participants offered for considering an assisted death.
… I thought this should not go on for much longer, so maybe I will put a pillow over his head. I used to sit there thinking shall I just put a pillow over his head. (P3)
‘Pain’. Most could understand whether a person experiencing extreme pain, which could not be relieved opted for an assisted death. As carers, all had felt responsible for protecting their relative from pain. Some perceived this responsibility to extend to helping them die:
Theme 4: problems with ending life. This theme describes the main reasons some participants would not consider assisted dying in dementia, either as a carer or person with dementia.
He would have taken it for granted that I would help him die if he was in pain. As much as he would take it for granted that I would make his meals or anything like that. (P3)
‘Still a person’. In contrast to the subtheme ‘disintegration’, several participants emphasized that their relative was ‘still a person’ and were distressed by suggestions their life was not worth living:
A minority disagreed with pain as a reason to want an assisted death, arguing that this could be relieved with medication. ‘Loss of pleasure’. Caring for a person who was ‘extremely unhappy’ could prompt thoughts about an assisted death for the patient: For as long as he enjoyed his food, you know enjoyed things then I would have carried on but when that was gone, there was no point. You don’t want to keep someone going who is beyond enjoying anything. (P10)
‘Disintegration’. The majority experienced their relative as disintegrating over the course of dementia. They expressed sorrow for their relative living through such loss: She was only bones, the wings had gone. She was literally just skin there was nothing there at all. She was like a skeleton and that was not fair. (P11)
‘Becoming a burden’. Participants believed the experience of becoming dependent on others, particularly if the person worried about becoming a burden, could lead to contemplation about assisted dying. They thought that people worried most about burdening their children: How would I react if somebody said, ‘Your children have got to care for you, we cannot provide a home, your children must cope’. I would be hard pressed actually not to go for assisted suicide. (P7)
The idea that he was not worth anything anymore made me very sad. He was still my dad. (P5)
‘It’s not all bad’. Several participants believed the experience of dementia was ‘not all bad’ for their relative. They spoke of ‘feared public perceptions of dementia’ which they believed were inaccurate. For them, having dementia was not a reason to want an assisted death and they were critical of public figures that had implied this: I thought it was terrible when Baroness Warnock said that anybody with dementia should be given euthanasia. I really felt like shooting her! (P15)
‘Will to live’. A few participants believed in the ‘will to live’; the strong desire to continue living, even while facing impending death. They believed this could lead people to change their minds on earlier decisions about assisted dying: Of course there is always this life sustaining thing within you and you want to go on living. (P15)
‘We can’t choose the way we die’. A minority viewed death as part of the process of life, which is to be accepted as opposed to controlled: I am reminded that anyone could die at any time and you cannot have a contract with death. You cannot contract it and say you will die at this time and here. (P11)
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Tomlinson et al. Although there was often a preference for a relative to have died sooner or in a different way, it was accepted that the death could not be intervened with:
actual experience of what you are going through. I think rather than speaking with a GP it would help to talk with an Admiral Nurse. (P6)
I wish she had a massive stroke or a heart attack and that would have been it … Unfortunately we can’t choose the way we die. (P13)
Although it should be noted that in countries where assisted dying is legal, the general practitioner (GP) is often a key person involved.
‘It was never mentioned’. A few participants said that because their relative ‘never mentioned’ (P7) assisted dying, they did not consider it for them. Reasons for the person not mentioning an assisted death were that they ‘enjoyed life too much’ or ‘battled hard for life’ or ‘would not be capable of the thought’ with dementia. ‘You don’t murder people’. Some participants said that assisted dying went against the principles of care, which are to ‘keep life going’. One likened assisted dying to ‘murder’. Concerns were also raised about the ‘risk of abuse’ should assisted dying be legalized for dementia: … the idea of a society not being able to afford all the people living as long as they are. And some other country, I could not think Britain would do it, saying, ‘Look when you reach 80, you have to have euthanasia’. (P7)
Discussion Summary of results Many participants (n = 13) supported the right to an assisted death with dementia. However, views were complex and raised several issues including (1) the need for capacity; (2) stringent safeguards; and (3) recognition of the impact an assisted death has on other people. While over half personally wanted the option of an assisted death, the majority felt unable to decide this for another person. Suffering through physical pain and psychosocial and existential factors were the main reasons to want an assisted death. If contemplating an assisted death, most believed it would help to talk with a health professional.
Interpretation of findings
‘Finding the right person’. Most believed that health professionals would ‘need training’ and should have a specialist focus on end-of-life care. Not every health professional was considered suitable for these conversations:
Complexity of assisted dying – autonomy versus the common good. The right to die is a powerful argument in the assisted dying debate. It draws on the principle of autonomy, which is highly valued in a democracy14 and it is therefore unsurprising that many supported the individual’s right to die. However, participants were clear that legalizing assisted dying for dementia was complex. Concerns were raised about mental capacity and whether a person would be able to decide at the point they wanted to die. Wider research that explores decision-making for life-sustaining treatments in dementia commonly identifies that these capacity issues and the consequent involvement of loved ones in decision-making make it challenging for people with dementia to make autonomous decisions.26,27 Therefore, decisions regarding assisted dying are clearer for other terminal conditions not affecting capacity.13 Many participants struggled with what is ‘right’ for the individual versus what would be the ‘common good’ for society. While most felt that individuals with dementia should have the right to decide their own death, many were concerned that legalizing assisted dying could impact overall dementia care: limiting interest in developing new treatments.6,28,29 Many grappled with what safeguards would need to be put into practice to ensure that assisted dying remained a choice for those with capacity and not something that vulnerable people felt coerced into.
I don’t think you can have that discussion with a medical practitioner or GP, because in my opinion they don’t have
Making the decision for oneself but not for others. Daskal et al.11 also found that dementia carers wanted the option
Theme 5: talking about assisted dying. This theme encapsulates participant’s views on talking with health professionals about assisted dying. ‘It helps to talk’. Many participants said ‘it helps to talk’ about experiences of caring, particularly if thoughts arise about assisted death. Health professionals were perceived as being able to offer ‘support’ and ‘information’ from which carers could ‘formulate opinions’ on assisted dying. However, the need for ‘careful conversations’ was stressed. ‘It would be very difficult’. The ‘stigma’ around assisted dying and its illegality in the United Kingdom meant that seeking support would feel ‘very difficult’. Some raised concerns about disclosing to health professionals due to fear of being judged unfit to care: I could not talk to anybody. I mean it is not the sort of thing you would normally … I would have been worried if I told them, they would have taken my mother’s care out of my control. (P8)
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Palliative Medicine
of an assisted death for themselves with dementia. Johansen et al.18 propose that people construe the option of assisted dying as a type of insurance, so that if an illness becomes unbearable, they have a means to end their life, enabling the restoration of choice and control over an illness. Research suggests that carers may feel unable to decide for other people due to uncertainty around (1) being able to reliably administer an assisted death, (2) anxiety about prosecution and (3) concerns about the emotional burden.15,29 In this study, the majority of carers decided to withdraw life-sustaining treatment, implying that acts of omission are viewed differently to acts of commission. De Boer et al.29 highlight that people with dementia will often change opinions on their end-of-life treatment over the course of their illness. This presents an ethical challenge for caregivers as even if a decision is made when a person has capacity in the early stages of dementia, this may not reflect what they want at a later stage when possibilities to discuss their views are limited. Reasons for and against an assisted death. Physical pain as a potential reason for an assisted death is of particular importance in dementia as this is often poorly detected and can go untreated.30 As with previous research,17–19,21,31 participants did not identify depression as a reason for wanting an assisted death, despite depression rates of 20% in those requesting an assisted death.17 Many participants moved between reasons for and against an assisted death. To explain this, Johansen et al.18 suggested that people will fluctuate between certain psychological dimensions at the end of life including hope versus despair, certainty versus uncertainty and the will to live versus the wish to die. Indeed, participants shared numerous reasons not to consider an assisted death. Some described dementia as ‘not all bad’, a finding in line with findings of good quality of life in mild to moderate dementia.32 Themes around the ‘will to live’ and belief that we ‘cannot choose death’ have been found in previous research and can be linked with the idea of sanctity of life.18,33 Talking with health professionals. Participants highlighted the need for conversations around assisted dying to be held with skilled, trained clinicians who are mindful of their own beliefs around dying. Participants were particularly concerned about being pathologized as depressed.
Although the research perceived people to have openly shared their views, assisted dying is not legal in the United Kingdom and there is a risk of a social desirability bias due to this.
Future research This study did not explore whether dementia type influences views towards assisted dying. Although not independently raised as an issue, carer burden may be higher with certain dementias such as frontotemporal dementia38 and this could be explored in further research.
Conclusion Participants were clear that assisted dying in dementia is particularly complex because of the ethical issues relating to mental capacity and concerns that legalization may have negative ramifications for future developments in dementia care. However, despite this, several participants believed they would want the option of an assisted death with dementia. This could potentially mean an increase in assisted dying requests, as the current generation of carers age and possibly develop dementia. Health workers need to understand current issues in assisted dying in order to hold informed conversations with those contemplating this. The presence of depression should not be assumed, but carefully assessed and treated if present before there is consideration of assisted dying. Some participants contemplated an assisted death for the person they cared for. This suggests that thoughts of hastening death may be more common than anticipated among dementia caregivers. Unbearable pain has traditionally been understood as the main reason for wanting an assisted death; however, the existential and psychosocial dimensions of suffering are as important. Health professionals should provide support which targets the holistic experience of dementia. Declaration of conflicting interests The authors declare that there is no conflict of interest.
Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
References
Limitations The sample underrepresented carers from minority ethnic backgrounds. These groups may hold different attitudes towards care,34 have lower uptake of support services35 and are more likely to opt for life-sustaining treatment.36 Most participants were female and there are gender differences in assisted dying attitudes.37
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