Background In Switzerland, helping with assisted suicide under certain conditions is not prosecuted. With approximately 300 cases annually, this leaves behind a large group of bereaved people where its consequences are mostly unknown. The study aimed to explore family involvement in decision making prior to assisted suicide, and to examine their ways of coping during the bereavement period.
Methods A qualitative interview study used the principles of Grounded Theory analysis. Eleven relatives of eight patients, who died in Southern Switzerland after assisted suicide, participated in semistructured interviews.
Results The large majority of family members faced moral dilemmas during the decision-making phase. Their respect for patient's autonomy was a key justification to resolve dilemmas. Two types of involvement were identified: categorised as ‘passive’ when the decision making was located with the patient, and ‘active’ when assisted suicide was proposed by the family member and/or the relative was involved in some way. The relatives reported feelings of isolation during and after assisted suicide. Family members reported fear of social stigma and did not openly disclose assisted suicide as the cause of death. None of those interviewed received formal psychological support.
Conclusions Bereaved families express moral dilemmas, feelings of isolation and secrecy in the management of assisted suicide in Southern Switzerland. These features seem underestimated and not sufficiently recognised by the healthcare professionals. Management of assisted suicide requests should include consideration of family members’ needs, in addition to those of the patient.
- assisted suicide
- hasten death
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Little is known about the consequences of assisted suicide on bereaved relatives. In this paper, we describe the experience of families whose relative has died after an assisted suicide in Southern Switzerland. Specifically, this paper aims to explore the involvement of families in the preparation for assisted suicide and to examine family members’ accounts of their ways of coping during the bereavement period. First author is herself a palliative care physician, confronted with patients requesting assisted suicide and their families.
Assisted suicide involves enabling the patient to obtain a lethal substance, which the person wishing to commit suicide then takes without any external assistance. In Switzerland euthanasia is against the law, but if certain conditions are met, assisted suicide is not prosecuted.1 The law considers suicide to be a violent death, which requires a police investigation. Following assisted suicide, the investigation usually leads to a judgment of dismissal.2 Five right-to-die associations exist at present and offer help within the framework of the law in Switzerland. Much of the national and international debate on assisted suicide is focused on ethical rights and duties, very often viewed from opposing positions, leading to a polarised debate.3 Far too little attention has been paid to the bereavement experiences following from a hastened death. Results from research are very controversial when examining hastened deaths in relation to families. Beder's speculation-based theory hypothesised that bereavement following assisted suicide was associated with the tendency to lie about the cause of death, to withdraw from others, and the heightened potential for feelings of shame, rejection and abandonment.4 Two quantitative studies undertaken in Oregon (USA) and in The Netherlands concluded that families coped better than a control group in terms of grief symptoms and post-traumatic stress reactions after euthanasia or assisted suicide and showed no higher incidence of depression. The possibility of saying goodbye, the openness of talk about death and dying, and the fact that death is predictable, could be protective factors reducing a family’s stress5 ,6
On the other hand, different ways to deal with regrets, fear of social stigma and symptoms of delayed grief were observed by Starks et al.7 More recently, a Swiss study found that 20% of relatives of patients deceased following assisted suicide demonstrated full or partial posttraumatic stress disorders (PTSD), and 16% had symptoms of depression in the 2 years after the death.8
This paper reports the first Swiss qualitative study exploring families’ experiences of assisted suicide deaths. Analysis of patients’ reasons to undertake assisted suicide is reported elsewhere.9
Cross-sectional qualitative interviews were conducted with bereaved family members of patients who had died from assisted suicide in Southern Switzerland. A detailed account of sampling, data collection and data analysis are described elsewhere.9 Grounded theory approach has been used since it is a valid approach for exploring a new area of research where literature data are insufficient and no explicit theories have already been established.10 ,11
Between 2003 and 2009, in Southern Switzerland, 13 cases of assisted suicide were identified from medical files kept by the specialist palliative home care team. Eleven relatives, five men and six women associated with eight patients, were recruited to the study. In one case, three relatives of a single patient were interviewed, and in another case, two. Four relatives declined to participate in the study, explaining that it would have been too emotional to recall the experience.
Inclusion criteria were: being a relative of a patient deceased following assisted suicide, being older than 18 years of age, able to give informed consent and to complete an interview in Italian or French. Approval for the study was obtained from the Local Ethical Committee.
Relatives were interviewed between October 2010 and October 2011, and their demographic data were collected. Individual semi structured interviews were conducted. An interview guide was initially developed and then modified during the process of initial data collection and analysis, as recommended by qualitative approaches.10 ,11 In this approach, the interviewer had an outline of topics to be covered, but was free to vary the wording and sequence of the questions to allow the interview to proceed naturally, with a good balance between initial researcher-elicited themes and new information unique to each person collected during the interview.
The interviews were audiotape recorded and transcribed verbatim. Interpretation and analysis were performed according to the principles of grounded theory.9 ,10 The analysis started from the first interview and influenced the next one, allowing the generation of additional codes and themes. Every interview was analysed at a micro level (phrase by phrase, word by word) and groups of codes were identified during the open coding. In a second phase of axial coding, all individual codes were sorted and re-sorted to find groups of concepts and common themes. In a final step, overarching themes were grouped in defined categories and central concepts, using a selective coding process. To reduce potential bias, CG and MP reviewed all interviews, and an iterative process of discussion was engaged in during the whole study. Quotes were selected in order to represent the typical experiences and also to evidence the diversity within the family members’ views.
We will initially present characteristics of the 11 relatives and then focus on their description of what happened the day when assisted suicide was performed. Then we will present the main results derived from the analysis of the interviews. Themes and subthemes that emerged in the interviews are reported in box 1.
Themes and subcategories emerged from the data analysis
The process of the assisted suicide preparation:
Patients’ reasons for assisted suicide
The moral dilemmas
Type of family involvement
Negotiations in the decision-making phase
The modalities of assisted suicide realisation:
Choice of the day
Perception of the type of death
Interaction with police authorities
Coping and bereavement:
Assisted suicide as a possible future option for themselves
Assisted suicide in comparison with classical suicide
The 11 relatives had a mean age of 56 years (range 40–71 years) (see Otable 1). All, except one, were principal caregivers and actively involved in the day-to-day care of the patients. All had been involved since the patients’ cancer diagnosis. Their relationship with the patient included: three nephews; three spouses, three daughters and two sisters. Relatives were interviewed a median of 24 months after the death of the patient (range 12–72 months).
In all but one case, the closest family members were present at the assisted suicide with the right-to-die association volunteer: typically between one and three family members witnessed the death. In a single case, the patient asked the relative not to be present at the moment of the ingestion of the drug because of the patients’ fear of not being able to swallow the drug in front of the family member. The relatives recalled having had little time for emotions immediately after the death, as all the attention shifted to the police’ investigation and the bureaucracy that was required.
All deaths were reported, as required by law, to police authorities. All cases led to a judgement of dismissal; in a single case, an autopsy was performed. Most of the relatives expressed relief that police officers came in plain clothes right after death. Not drawing the neighbours’ attention was referred to as important by many relatives.
In some cases, relatives reported a poor understanding of the legal framework of assisted suicide before the procedure; in two cases, this led to fears and concerns that they would be prosecuted during the police investigation.
Experiences of assisted suicide and its aftermath
Three main themes concerning the experience of assisted suicide and its aftermath were identified: the moral dilemmas, the perceived isolation of the family, and the management of secrecy associated with assisted suicide.
The moral dilemmas
All those interviewed described moral dilemmas during the decision-making phase. Their main concern was that they broke the ‘thou shall not kill’ rule, by helping the patient with assisted suicide. There were common concerns if assisted suicide was a right thing to do in general, or if it was the right time when it was performed. Whether or not to be involved in assisted suicide, and at what level of involvement, were also crucial concerns. Relatives reported more than one dilemma being present at different times during decision making (see Obox 2).
Accounts of relatives’ perceptions of the experience of moral dilemmas
“My brother was used to say: “you do not have to be selfish, you do not have to think only for yourselves… if I want to do this thing is because I do not have solutions and I can't bear it anymore.” Ehm…he was saying that we were selfish because we wanted to keep him alive…at all costs. Even in these conditions… so inhumane.” (ID3)
“At that point I said to myself: better like this (assisted suicide) at the end, because if he would have done differently (classical suicide) it could have been worst. And at least he is cared for… it is a bad thing, but I thought: it is better like this…it is a painless thing, safe, without worst consequences.” (ID3)
“Let's say that close to the end this being in agreement (with the assisted suicide) helped me going on… I have this big sense of culpability of having thought “This thing will end sooner or later…” because I was blocked in the situation. This perhaps helped in rounding corners of the situation, but this sense of culpability has reappeared much more later on… well I'm suffering the consequences more now than before.” (ID6)
“But your conscience works and tells you: “well… is it right? Is it not right? He wanted… yes…but…” Perhaps I could have influenced him, being the daughter. You ask yourself a thousand of questions.” (ID7R)
“Now that a couple of years have passed, only now I'm speaking freely about it, convinced that I would do it again, exactly the same way… I'm absolutely happy of what I have done, but at the beginning (after death) you have plenty of doubts. In the night you ask yourself: “Did I did it right? Should I have gone and asked someone else's advice? I should have waited a little more.”(ID7R)
“In the last days every morning I was hoping to find him dead …especially when you start on that road (assisted suicide), you tell yourself “maybe he can die peacefully before.” (ID2)
During the decision-making phase, two types of involvement have been identified:
‘Active’, when the relative shared common values and/or proposed assisted suicide to the patient and/or actively helped the patient in the bureaucracy needed for assisted suicide.
In these cases, patients and relatives shared a common moral position concerning assisted suicide, leading to little discussions and more straightforward decision making. All relatives with ‘active’ involvement helped the patients in processes before the death. They reported that any dilemmas were solved during the decision-making phase or few months after death. These relatives seemed being able to move on from their initial doubts with less emotional distress. Some relatives had a more ‘passive’ involvement: the decision making ethically challenged their moral values and they took no practical role in the assisted suicide. In the ‘passive’ involvement, relatives appeared to encounter dilemmas of different nature during and after the assisted suicide. In these cases, the burden of carrying moral dilemmas was reported as significant. In some families, different members showed different types of involvement during the decision-making phase.
Two participants said that by acknowledging the views of family members opposing assisted suicide, a deeper discussion of the pros and cons of the decision occurred. In other cases, the dissenting members had been accused of self-centeredness and insensibility towards the patient's suffering. They appeared to be more isolated from the decision-making process: their dilemma was considered as of secondary priority in respect of the patient's wishes. Some patients threatened to commit suicide when faced with family members who opposed their decision. In the end, assisted suicide was considered by most of the relatives a better solution than unassisted suicide.
A shared common vision regarding assisted suicide between the patient and one member of the family seemed to represent a real catalyst to start the process. The majority of the relatives described that they experienced a wish for a natural death for the patient especially when the date of assisted suicide was approaching.
Many of these dilemmas were reported to be dwelt upon and reviewed many months after death, and in a few, relatives were reported to be an active concern years after the death. For some family members, mostly those with a passive involvement, the sense of culpability, of having broken a social rule and the possible consequent blame were difficult burdens to carry and infrequently disclosed. For others, after an initial postdeath phase of doubt, the dilemmas were solved. In some of the relatives, the legacy of keeping a promise made to the patient had been a very crucial influence in supporting the assisted suicide. Regardless of the type of involvement, respect for the patients’ autonomy was the most common reason provided as helping relatives to overcome their dilemmas.
Some relatives recalled the illness journey and degree of the patient’s suffering and desperation.
The acknowledgement that death was inevitable and imminent led the relative to justify assisted suicide as acceptable. Feelings of helplessness experienced by the relatives facing the suffering of their loved one were often reported. In many cases, the moral dilemmas faced during decision making and remaining during bereavement were not properly addressed Family members did not express the need for a professional support nor was it offered.
The isolation of the families
The relatives reported feelings of isolation during the decision making and the bereavement period (see box 3).
Different factors may have contributed to the isolation. Many relatives kept the promise made to the patient before death of keeping the assisted suicide secret, thus leading to a restriction in open dialogue within the family and with others during both before and after the death. Talking about the rights or wrongs of assisted suicide was conducted first with the patient or within a restricted family circle, and appeared not to be directed at health professionals. The fear of being judged or disapproved of by the other members of the family or friends, emerged mostly during bereavement. Family members were concerned about potential stigma associated with assisted suicide. A further reason for isolation was related to the emotional burden of recalling facts and related emotions especially during bereavement, thus leading to the unwillingness of some of the relatives to share their experiences with others.
Accounts of relatives’ perceptions of the experience of isolation
“I couldn't speak with my children of my problems, because they were his (of the patient) own problems… so I couldn't speak with them, I didn't feel like it… I've never spoken with anybody about it …” (ID2)
“The doctor once told him:” do not worry, Mister… you are not going to suffer, we have many drugs…” but this was not enough for him. He (the GP) wasn't in agreement (with assisted suicide), but he did not prevent it. He prepared the due certificate, he cared for him, but he said: “ You cannot ask me this.” (ID4)
“You are all by yourself, all by yourself (talking about the decision-making phase).” (ID7P)
“It (assisted suicide) was a personal problem, that I had to digest by myself. I have looked for information, I have read a lot and when I had some questions I've asked. And the answers were open and clear and enough for me to understand.” (ID5)
The management of the secrecy associated with assisted suicide
A common concern appeared to be the management of the secrecy regarding assisted suicide during the decision making and in the bereavement phase (see box 4). Relatives’ accounts suggest that many patients were reported to choose carefully to whom to disclose their intentions, while others were openly speaking about assisted suicide.
Accounts of relatives’ perceptions of the experience of secrecy
“At that point (after death) it is difficult to carry, because the worst days began… All the people, all the family… you go on with this never-ending lies!! The impossibility to tell “look, he has died of assisted suicide…” it was tremendous, it was sad.” (ID7R)
“I told someone about my brother's assisted suicide and he wanted to know more and more. So I said: “Look, one day or another I'll tell you, but not now”. Two years have passed now and I'm not ready to face what happened. Because it means… living it all again.” (ID3)
“I find a too delicate thing to tell at this age (to her 18-year-old daughter)… such a thing. Perhaps I'll tell her in the future.” (ID3)
“I have to respect the promise made to him…of never speaking about it with others in the family…. A secret of the family, a good secret.” (ID7G)
“I find absurd that in 2009 we have still to cover this thing (assisted suicide).” (ID7R)
“I need sometimes to tell someone…so I told a friend of mine… and I told my sister… forcedly… because I've looked for some…not understanding, but exchange… I need to speak with someone, that's it…I do not know why, I cannot explain why.” (ID6)
“My mum doesn't speak of our uncle's assisted suicide, because she believes these are things that you shouldn't do, that it is a mortal sin.” (ID1)
Many relatives reported that they found it impossible to discuss assisted suicide with close friends or other relatives, reducing opportunities to discuss their moral concerns. In a few cases, relatives referred to having shared their concerns with a palliative care team member, the general practitioner or the oncologist. Two relatives affirmed that they were expecting help from the palliative care team in trying to convince the patient to withdraw from his assisted suicide intentions.
During the first months after assisted suicide, in the majority of the participants, the question regarding assisted suicide disclosure was crucial. The secret was described by many of the relatives as a heavy burden to carry, and the disclosure was very carefully managed. A desire to share the details was reported, but the persons with whom to share their experiences with were carefully chosen.
Ambivalence in the management of the secret appeared to coexist in the same interviews, with the disclosure of the assisted suicide and the total denial of it. This dualism represented an intense emotional and ethical conflict that the relatives faced during bereavement. Some relatives reported that assisted suicide was considered as a private affair within the family, consequently, their choice was to keep it secret. Additional reported reasons were the promise made to the patient to keep the assisted suicide a secret after their death, fear of social stigma and the emotional burden of recalling the experience. Where the bereaved person was a parent of adolescents or young adults they decided not to tell them, some of them affirming a future intention to disclose, some others not. A major difficulty expressed by the parents was that they did not know how to explain such a complex death to them. None of the participants sought or received any form of bereavement support by the time the interviews were performed.
The results of this exploratory study highlight that bereaved families following assisted suicide in Southern Switzerland are confronted with moral dilemmas, feelings of isolation and secrecy management facing. These three features are strongly associated with each other. The secrecy used by relatives in disclosing assisted suicide could be influenced by different factors: the moral dilemmas during the decision-making phase, the unresolved moral dilemmas during the bereavement phase and the perception of a certain reticence in discussing assisted suicide with healthcare professionals. Concerns about moral judgments could have prevented open communication about the type of death and the relative's involvement. Wagner et al8 recently reported that families in Switzerland can suffer from PTSD and complicated grief after assisted suicide. These authors observed that poor social acknowledgment was related to PTSD, and in our population, fear of social stigma was an important concern.12 Thus, it is supposed that the PTSD could be related to witnessing the assisted suicide, while our data support the hypothesis that it is the involvement in assisted suicide that triggers moral dilemmas with related consequences.
The isolation reported in our study confirms Beder's speculations about withdrawal from others.4 Family members presented several reasons for their isolation. The patient's request for secrecy appeared to be a strong isolating factor, the perceived lack of openness of the caring team, and the fact that assisted suicide is perceived as a personal dilemma can be responsible for isolation. What roles the moral dilemmas play in relation to the isolation experienced during the decision-making phase is unclear, and more robust data are needed to confirm this preliminary findings.
The type of involvement seems strongly correlated to the personal moral stance of the relative: a favourable position concerning assisted suicide leads to an active involvement in its procedures, and possibly to a less troubled bereavement. But secrecy and isolation seem to be unrelated to the type of involvement.
Bosshard et al13 reported that, after analysis of the Right to Die Association's archives, 75% of relatives of patients who died after assisted suicide in the German speaking part of Switzerland were reported to be in agreement with the patient's wish. It is not described how the Right to Die Association assessed these families’ members.
In our study, all family members, independently from their views, seemed generally unprepared to disclose either the type of death or their involvement in it. These findings challenge the hypothesis, proposed by American and Dutch authors, that euthanasia brings openness in dialogue.6 ,7 Our relatives did not share their dilemmas, and in many cases, the patients themselves asked them to keep the assisted suicide secret. A possible explanation of these differences could be that the Swiss Italian cultural and moral background could be different from Oregon and The Netherlands. In these countries, assisted suicide is legalised and has a clear procedure to follow, leading to a clearer pathway and to a shared responsibility between patients, families and healthcare providers. The fear of being prosecuted put family members in a very vulnerable situation, as confirmed by Stark's data.7
The moral dilemmas were perceived by the families to be under-recognised by the caring teams. A possible explanation can be the fact that assisted suicide issues could have challenged the moral beliefs of some members of the teams, leading in some cases into the avoidance of the discussion. The wish of some patients to keep the assisted suicide secret could have had also played a role.
Strengths and limitations of the study
Most of the research upon assisted suicide bereavement has been conducted using quantitative methods, leading to a limited understanding of this phenomenon. The participants in our study were a small sample from Southern Switzerland and were interviewed at different times after bereavement. We acknowledge that for a small number of relatives who declined to participate in an interview study that requires them to dwell upon difficult issues means that we lack data about their experiences.
The results should not be generalised to the French-speaking and German-speaking cantons of Switzerland. Future research in these cantons is needed to investigate cultural differences of those facing assisted suicide and their relatives. This study has allowed us to collect detailed accounts and has allowed families to express their emotional burdens. The qualitative approach used in our study has also substantiated some sources of distress identified by previous research, allowing an in-depth exploration of reasons for the distress.
Families participating in assisted suicide in Southern Switzerland faced many challenges during the decision making and the bereavement phase. Moral dilemmas seem to play a crucial role, contributing to secrecy and then to isolation before and after the death.
A proper recognition and assessment of the relatives’ experience is needed in order to provide support during the process. Acknowledgement of the experiences of family members should be an essential component of all research investigating assisted suicide.
Policy guidelines in Switzerland should be developed in order to better assess family needs during assisted suicide decision making, and further research is warranted to investigate the impact of these guidelines.
We thank all the family members who took part in the study. We are grateful to the nurses who helped in the recruitment. We also thank Joyce Pellandini and Chantal Corti-Polti for transcribing the interviews.
Contributors CG conceived the study. CG and MP were responsible for data collection and analysis. All authors contributed to the writing of the final draft. CG and SP are guarantors of the study.
Funding The study was funded by the ABREOC, Ente Ospedaliero Cantonale, Ticino, Switzerland (Grant number 22016).
Competing interests CG has received support from ABREOC for the submitted work.
Ethics approval The Ticino Regional Ethical Committee approved the study (ref number 2157) on 5th May 2009.
Provenance and peer review Not commissioned; externally peer reviewed.