Background In the Netherlands, people can receive (limited) demedicalised assistance in suicide (DAS)—an option less well known than physician-assisted dying (PAD).
Aim This study explores which trajectories people take to seek DAS, through open-coding and inductive analysis of in-depth interviews with 17 people who receive(d) DAS from counsellors facilitated by foundation De Einder.
Results People sought DAS as a result of current suffering or as a result of anticipating possible prospective suffering. People with current suffering were unable or assumed they would be unable to obtain PAD. For people anticipating possible prospective suffering, we distinguished two trajectories. In one trajectory, people preferred PAD but were not reassured of help by the physician in due time and sought DAS as a backup plan. In the other trajectory, people expressed a preference for DAS mainly as a result of emphasising self-determination, independence, taking their own responsibility and preparing suicide carefully. In all trajectories, dissatisfaction with physician–patient communication—for instance about (a denied request for) PAD or fearing to discuss this—influenced the decision to seek DAS.
Conclusions While PAD is the preferred option of people in two trajectories, obtaining PAD is uncertain and not always possible. Dissatisfaction with physician–patient communication can result in the physician not being involved in DAS, being unable to diagnose diseases and offer treatment nor offer reassurance that people seem to seek. We plea for more mutual understanding, respect and empathy for the limitations and possibilities of the position of the physician and the patient in discussing assistance in dying.
- End of Life Care
- Suicide/Assisted Suicide
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Assistance in dying is a widely debated theme. Part of this debate centres around the (de)medicalisation of assisted dying. Conrad defines medicalisation as “a process by which nonmedical problems become defined and treated as medical problems”.1 Conversely, demedicalisation can be defined as “the point at which the medicalization of social life is turned back, or reversed”.2 (De)medicalisation of assisted dying can relate to (1) the prerequisite of a medical condition in granting assistance in dying, (2) the role of the physician in distributing or administering the means to end life and (3) the presence of the physician during the termination of life.3–5 Legislation for the medicalised approach, physician-assisted dying (PAD), exists in the Benelux countries, several states in the USA (Oregon, Washington, Montana, Vermont and California), Canada and Colombia.6 ,7
Legislation for demedicalised assistance in suicide (DAS) exists in Switzerland. The daily practice, however, seems partially medicalised as the Swiss right-to-die organisations work together with physicians distributing the lethal medication and some organisations restrict the assistance to certain medical conditions. It is argued that the difference with the medicalised approach is much smaller than initially thought because in Switzerland also non-physicians are not allowed to provide the necessary drugs to effectuate a suicide.4
Less well known are the right-to-die organisations in countries other than Switzerland that offer a demedicalised approach to assistance in dying. Examples of these organisations are the Dutch Dying with Dignity Society, Foundation De Einder and Foundation End-of-Life Counselling in the Netherlands;8 ,9 Friends at the End in the UK;10 ,11 the Final Exit Network in the USA12 and Exit International in Australia.13 These organisations all distribute information on ‘how-to’ methods for self-deliverance that do not require physician involvement and in some cases do not require a medical diagnosis. Scientific research into these right-to-die organisations offering demedicalised assistance in dying is sparsely available.10 ,11 ,14 ,15
When focussing on the Dutch situation, people with a wish to end their life can request PAD under the Termination of Life on Request and Assisted Suicide Review Procedures Act. These people can also opt for DAS, which consists of (the legally allowed assistance of) having conversations about the wish to end life, offering moral support and providing general information and advice on non-mutilating methods how to end your own life. These two approaches of assistance in dying differ in the applicable laws, the person providing assistance, the form of assistance and the ways of dying (see table 1). Both approaches are to be distinguished from the suicide prevention approach, which focuses on preventing suicides instead of regarding the option to end life as a possibility as well.
In the Netherlands, DAS has received increasing attention over the past years in the media, most recently through Heringa's court case in which a son helped his 99-year-old mother to end her life.16–19 Scientific research has mainly focused on the occurrence of specific forms of deaths resulting from DAS, like voluntary stopping eating and drinking and ingesting self-collected lethal medication. It is estimated that in the Netherlands in 2010 between 0.4% to 2.1% of all annual deaths occurred through voluntarily stopping eating and drinking and between 0.2% and 1.1% of all annual deaths occurred through self-ingesting self-collected lethal medication.20 ,21 In the past 5 years, the number of people annually receiving DAS from counsellors facilitated by Foundation De Einder has doubled from about 300 to more than 600.22 Among these people, two groups of people are distinguished.15 One group of clients—with a more immediate wish to end life—is looking for a peaceful death to escape current suffering. The second group of clients—without a(n urgent) wish to end life—is looking for reassurance to be able to prevent possible prospective suffering. Interestingly, half of the people with a serious disease who have received this counselling had not requested PAD from their physician before seeking DAS. This raises the question: which trajectories do people take to seek DAS in relation to the availability of the option of PAD. We aimed to clarify these trajectories by conducting a qualitative interview study with people who receive(d) DAS from a counsellor facilitated by Foundation De Einder.
A qualitative research design was chosen because of the explorative nature of the research objectives and the unavailability of scientific literature about the trajectories to seek DAS. Data were collected from in-depth qualitative interviews with people who receive(d) DAS from counsellors facilitated by Foundation de Einder held between September and December 2012.
A notice about this upcoming research was published in the quarterly magazine of Foundation De Einder. This magazine was sent to people donating money to the Foundation—not necessarily people seeking DAS—but an overlap was expected. Also, counsellors were asked to notify people seeking DAS of the upcoming research, either in person or through postal letters or email.
A total of 24 potential participants enrolled themselves—20 through intermediation of the counsellor and 4 through the notice in the magazine—by contacting the researcher (MH) by telephone or email. All potential participants were contacted by telephone to ask five screening questions concerning gender, age, motivation to contact counsellor, former request for PAD and if they had a personal consult with which counsellor. These screening questions—based on our previous quantitative study15—were asked to make sure a diverse group of people could be selected. Potential participants who had not had a personal consult with a counsellor were excluded from participation (n=3), because often these people are still in an orientating phase where counselling does not entail providing information on ways to end life.15
Three potential participants were not willing to participate in a personal interview (eg, due to emotional burdens). Finally, one potential participant was not selected for participation due to similarity with already interviewed or selected participants. For analysis, this resulted in 14 interviews with 17 people. Three interviews were conducted with couples in which both participants sought DAS. While people with a psychiatric background were more difficult to include, the ones included represented specific psychiatric problems well. The selected sample reflected the population of people seeking DAS from a counsellor facilitated by De Einder.15
The principal author (MH)—with a background in training for professional and personal communication in psychology—has previously worked as a counsellor in cooperation with Foundation De Einder and conducted the interviews. This prior experience attributed to a great knowledge about DAS and experience in discussing the subject but could also lead to a possible interviewer bias. The difference in position and the necessary skills have been addressed in the research team. All interviews took place at the residence of the respondent except for one, which was held at a conference room at the VU University Medical Center, Amsterdam, the Netherlands. All respondents lived in the Netherlands. All were informed about the purpose of the study and signed an informed consent for participation in accordance with the procedure approved by the Ethical Committee of the VU University Medical Centre. The interviews lasted between 1 hour and 2½ hours.
The purpose of the interviews was to learn more about the reasons why the respondent sought DAS and, among other issues, which trajectory preceded this decision. It was decided—given the sensitive matter—to start with a general opening question such as: ‘how are you doing now?’ but it turned out that the respondents were very eager to talk about the subject so later interviews were started with the question: “This interview is aimed at receiving more information about you, your situation and the counselling offered by a counsellor working with foundation De Einder. What has led to contacting De Einder?”
After the opening question, the consecutive questions were based on what the respondent said. A topic list was used as a reminder of the issues that should be addressed in the interview. Topics included were as follows: the respondents' health status and their view on their social network and daily living, the reasons leading to contact a counsellor facilitated by De Einder and their contact with their general practitioner (GP) or physician about this subject. See online supplementary appendix 1 for the topic list of the interview.
The interviews were recorded and fully transcribed. Field notes were made during and after the interview. Analysis started during data collection and this analysis influenced the subsequent data collection, following the principles of sequential and thematic analysis.23 First, all interviews were thoroughly read to become familiar with the data and case reports of every participant were made by the principal author and discussed within the research team. Open, inductive coding was then used to identify recurring themes in the interviews, which was a constant movement between the dataset, the coded extracts and the descriptive analysis in process. No prior theory or framework was used in the analysis.24 The code list extended as more interviews were analysed, codes were grouped and regrouped in the process of analysis. Online supplementary appendix 2 shows an overview of the codes that were created in relation to the background and reasons to contact a counsellor facilitated by Foundation De Einder. Writing formed part of the analysis because the writing process also pointed out which data, codes or interpretations were not clear yet, which led to new analysis cycles of the data. The writing process, the coding and descriptive analysis were discussed between all authors and led to a clearer understanding and better representation of the data.
The majority of the selected participants were aged over 65 years, had not requested PAD before seeking DAS and were seeking DAS in anticipation of possible prospective suffering (see table 2).
For the people with current suffering (n=5), we distinguished one trajectory consisting of people who were unable or assumed to be unable to obtain PAD. For people with anticipating possible suffering (n=12), we distinguished two trajectories. In one trajectory, people sought DAS as a backup for when PAD was not possible in due time (n=8). In the other trajectory, people expressed a preference for DAS, primarily as a result of valuing autonomy, self-determination and own responsibility (n=4).
Trajectory ‘unable to obtain PAD’
People with current suffering were unable or assumed they would be unable to obtain PAD and sought DAS out of negative considerations. Some of them were confronted with a denied request for PAD, after which their death wish was not discussed anymore with their own GP (see box 1 for supporting quote 1). Others, however, never requested PAD with their GP because of a disturbed relationship with the GP. People with psychiatric suffering did not request PAD out of fear for crisis intervention or a provisional detention order when doing so and the idea that PAD was impossible to obtain for psychiatric patients. They also felt it was impossible to seriously discuss the wish to die and to prepare a suicide in a careful humane way and to obtain trustworthy information on suicide methods in the regular healthcare (see box 1 for supporting quote 2).
Supporting quotes for trajectory ‘unable to obtain PAD [physician-assisted dying]’
Quote 1 […] And I don't discuss it [the wish to end life—MH] regularly with the GP [general practitioner]. Actually that chapter is closed. So I went my own way and the GP…well, we don't discuss that anymore. [Respondent 5]
Quote 2 If you want to take the option of suicide serious, they [regular healthcare—MH] see that right away as something pathological. […] At the physician it is crisis intervention right away. [Respondent 1]
Quote 3 [Suicide has—MH] a very negative connotation. Euthanasia is like it's acceptable at a societal level […] People would say “Euthanasia? That's probably ok, because the physician did it”. [Respondent 5]
Quote 4 You want to prevent that somebody does something that undermines your suicide—as a result of his or her mental conflict. [Respondent 2]
Quote 5 [PAD—MH] would be good, because I would know the medication is trustworthy and I don't have to deal with “dubious” people. [Respondent 1]
Despite receiving DAS, these people expressed a preference for PAD. Reasons were the fear of failure of a suicide attempt, the secrecy and illegality surrounding the collection of medication, little support from surrounding people, a negative connotation with suicide and the need for secrecy to avoid others from preventing the suicide (see box 1 for supporting quotes 3 and 4). PAD would offer more certainty, would feel legitimate and societally acceptable and offers the possibility of the presence of a close one without them being regarded as a possible suspect (see box 1 for supporting quotes 3 and 5). Eventually, one interviewee found another physician who granted the request for PAD.
Trajectory ‘back up plan’
Among the people anticipating possible prospective suffering, one group expressed a preference for PAD. These people discussed their living wills with their physician and/or enquired about the standpoint of the physician concerning PAD. They, however, also sought DAS, mainly for negative reasons.
The disappointment that followed after the enquiry about the physician's standpoint concerning PAD or discussing living wills for possible prospective situations influenced them to seek DAS (see box 2 for supporting quotes 6 and 7). Possible prospective situations involved situations like dementia or ‘completed life’, in which people—mainly at an older age—in their opinion have no more perspective to life and as a result develop a persisting active wish to end life.19 These people also did not want to burden the GP with their own life's end, heard un-reassuring stories of GPs withdrawing help in offering PAD and were critical of the (current practice of the) PAD law. Examples of this criticism were feeling too dependent on the GP, regarding it as asking too much of a favour, the absence of an obligation to refer in case a physician could not help, the difficulty others had in obtaining PAD and being convinced that PAD would not be possible in situations of prospective suffering like ‘completed life’ or dementia.
Supporting quotes for trajectory ‘backup plan’
Quote 6 Actually, it comes down to this: “We [general practitioners—MH] cannot guarantee anyone [assistance in dying—MH].” And that brings me nothing, because I want certainty. “But you want too much certainty” [the physician said—MH] [Respondent 11]
Quote 7 Everywhere we stood outside within two minutes. Because our question “What is your standpoint concerning euthanasia? Are you willing to assist in due time…?” “Absolutely not!” And outside we were again. Until we found a general practitioner who said it was discussable” [Respondent 7]
And then you still have to wait and see if he really does it, but anyway. [Respondent 6]
Quote 8 For many people, the most important reason is, that you—for God's sake—don't want another person to decide if your life is liveable. You should be able to decide that yourself! Not that some physician says: “well, it's not that bad”. [Respondent 8]
Quote 9 If you fall under the PAD [physician-assisted dying] law, it is nicer for the ones left behind. When you suicide yourself it does happen a bit in secrecy. For the children and the ones present that is less pleasant. It is quite a thing—and I still remember with my mother—the police arrived and it's all very unpleasant. Like you've done something wrong. [Respondent 9]
Quote 10 With PAD at least you know everything will go well. At least, that's what you can expect. With DAS you have to wait and see you don't vomit up the medication despite the anti-emetics. [Respondent 7]
Quote 11 If, for example, we are ready in a year from now, we can go to the physician. And if he says “But nothing is happening”, then we can decide for ourselves. [Respondent 13]
Positive reasons for seeking DAS were valuing self-determination, one's own responsibility and independence, wanting to explore their death wish by discussing this seriously with someone and having positive examples of others voluntarily stopping eating and drinking or self-ingesting self-collected lethal medication (see box 2 for supporting quote 8).
The counselling they received made people aware of the downsides of DAS. They were critical about the treatment of family members by the police following a suicide and the fear of failure of a suicide attempt (see box 2 for supporting quotes 9 and 10). In the hypothetical situation that PAD was possible to obtain, they would prefer to make use of that possibility. However, they were aware that opting for PAD might not be an option in the situations of prospective suffering they foresaw and therefore organised a backup plan in which they could decide themselves (see box 2 for supporting quote 11).
Trajectory ‘valuing autonomy’
Another group of people who sought DAS in anticipation of possible prospective suffering sought contact with a counsellor for DAS without wanting to opt for PAD. They primarily expressed positive reasons, like valuing self-determination, independence, taking your own responsibility and a dignified death (see box 3 for supporting quotes 12 to 14). They held a strong plea for DAS. They wanted to prepare suicide carefully, prevent harm to others and talk with a neutral sparring partner concerning the subject of suicide.
Supporting quotes for trajectory ‘valuing autonomy’
Quote 12 I want to do it myself. I don't want to be dependent on another, because I'm not sure if the other one won't say: “well, you can live on for a while longer”. When I say it's enough, then it's enough. [Respondent 17]
Quote 13 I want a dignified, respectful life's end at a time that I decide. [Respondent 16]
Quote 14 I actually think that you can't allow the physician to do it, when you're still able to do it yourself. I think it's morally more just if I say I will do it myself […] For the physician it's quite a burden. In the end, he terminates someone's life and that is burdensome for the physician. And actually, I think it's a little bit cowardice if you let the physician do it, while you can do it yourself. [Respondent 14]
Quote 15 And I can read what the law says. I mean I presume the moment I want to end life is not the moment the physician is convinced that I suffer hopelessly and am terminal. [Respondent 15]
While autonomy was very important, negative reasons in this trajectory were the conviction that PAD was only for terminal diseases or that it was not for psychiatric patients or situations of ‘completed life’. Also, experiencing too much time pressure in the physician's daily practice for conversations on the subject of the timing and manner of one's own death, wanting to avoid hopeless and unbearable suffering, not wanting to burden the physician and not wanting to beg the physician for help led to seeking DAS (see box 3 for supporting quotes 14 and 15).
People openly discussed their own preparations in receiving DAS with the GP. The standpoint of the GP on PAD was sometimes discussed, but clearly the person's conviction that this matter involved them taking their own responsibility prevailed. Some anticipated that the situation in which they wanted to end life would not meet the criteria of the PAD law (see box 3 for supporting quote 15). One interviewee thought PAD was only acceptable in circumstances where he would be physically incapable of ending his own life or if his suicide attempt failed. This form of backup—where PAD is a backup when DAS fails or is impossible—is a reversal from the previously described ‘back up trajectory’ where DAS is the second option in case PAD is not possible.
People with current suffering seek DAS when they are unable or assume that they are unable to obtain PAD. People anticipating possible prospective suffering either seek DAS as a backup for when PAD is not possible in due time or prefer DAS mainly as a result of valuing autonomy, self-determination, taking their own responsibility and carefully preparing a suicide.
A limitation of this study is that only people receiving DAS from counsellors facilitated by Foundation De Einder are selected. In addition, a self-selection bias is apparent. This is the result of participants enrolling themselves in this study and the fact that most participants have been recruited through a counsellor. Furthermore, the subset of people who died after receiving counselling is missing. Conclusions therefore cannot be generalised to the population of people seeking or receiving DAS. However, the goal of selecting participants in this research is not to obtain a representative sample to make generalised assumptions but to obtain a wide range of different participants to explore previously unknown trajectories to seek DAS. This study therefore offers a unique insight into the field of DAS in the Netherlands.
The different trajectories offer relevant knowledge about the current practice of assistance in dying and the different situations and needs of people seeking this. First, the trajectory where people are or assume they are unable to obtain PAD can offer a partial explanation why half of the people seeking DAS who have a severe disease—of which one-third suffer from a psychiatric disease—do not request their physician for PAD.15 It turns out that psychiatric patients do not request their physician for PAD out of fear for crisis intervention or a provisional detention order or because they still believe PAD is not available for people with psychiatric diseases. Not requesting PAD can result in the GP not being involved at this precarious moment and the patient missing out on important aspects like diagnosing diseases and offering treatment.
Second, in two of the three trajectories to seek DAS, a preference for PAD is prevalent. Rurup25 also concluded that people who are weary of life and think about ending their life themselves prefer that physicians will provide the medication. This gives them a safe feeling of good judgement and a painless and societally accepted death. This latter reason is also apparent in this study. However, the provision of medication by a physician is restricted under the PAD law. PAD cannot be guaranteed in advance for situations in which patients anticipate prospective suffering because it depends on whether the due care criteria are met in a situation of a current request for PAD.
Third, the trajectory where people seek DAS as a backup for PAD emphasise the importance—and the difficulty—of patient–physician communication, concerning the subject of seeking PAD. The response of the GP to an enquiry about PAD—or an actual request for PAD—can be disappointing to patients. Perhaps this response is communicated in such a way that patients do not discuss the subject of wanting to influence the timing and manner of their own death with their GP anymore. This suggests that one of the guidelines mentioned in the position paper on the role of the physician in the voluntary termination of life—published in 2011 by the Royal Dutch Medical Association—still has not fully come to practice: to keep the conversation about assistance in dying going—even outside possibilities the PAD law offers.26 Pasman et al 27 noted that discontinuing to talk after a refusal of a request for PAD can lead to the misunderstanding by the physician that the patient's wish to die has disappeared. They emphasise the importance of open communication about wishes to die even outside the context of PAD. If people feel unable to talk about these wishes, their quality of life may be further diminished.27 The findings of this study support such attempts to talk freely about a wish to die and an assisted death. Besides open communication, we would also like to plea for more mutual understanding, respect and empathy for (the limitations and possibilities related to) the position of the physician and the patient in discussing assistance in dying. People from the trajectory who value autonomy seem to be more aware of these limitations of the physician and emphasise their own responsibility. This finding might make GPs aware of the own responsibility the patient has (and can take), especially when GPs feel pressured into offering assistance in dying.
Furthermore, the trajectories show that there is a difference between people seeking DAS for now and people seeking DAS for in due time. For the latter, seeking reassurance seems to be important and not so much seeking death itself. This gives rise to the question of what role the physician (and society) can play in offering this reassurance to the patient. It can also be a relief for the GPs, who are confronted with discussing this matter, to realise that many people seeking DAS are not really seeking to end life now. It does remain unknown, however, as to how many will actually decide to end life themselves at the moment suffering is apparent, but our previous study suggests this percentage is relatively small.15
In conclusion, this study clarifies the pros and cons of both medicalised assistance in dying and DAS from the perspective of people seeking DAS. While PAD offers a certain and dignified death and allows for the legal presence of others, obtaining PAD is uncertain. This uncertainty regarding the availability of PAD is especially the case for psychiatric patients and patients suffering from dementia or a ‘completed life’. Initiatives that clarify the possibilities falling within the scope of the current law on PAD are helpful, for example, initiatives like The End of Life Clinic which provides PAD to patients who meet all legal requirements but whose requests are rejected by their regular physician.28 On the other hand, there will always be people falling outside the scope of the law on PAD, for example, when it concerns anticipating possible prospective suffering or people who fall in the trajectory that values self-determination above everything else. For them, DAS allows for self-determination and independence but offers a fear of failure, possible legal problems for the close ones involved and stigmatisation. While the possibility to voluntarily end one's own life is mentioned by both the Royal Dutch Medical Association and the Advisory Committee Completed Life,19 ,26 this study shows that—from the perspective of people seeking DAS—it compasses several negative (legal) consequences that still need attention.
Contributors MH had the initial idea for this study and wrote the research protocol, performed the interviews and the analysis and drafted the manuscript. HRWP and BDO-P commented on and contributed to the design, the analysis of the data and the final draft of the manuscript. All authors had access to all the data, can take responsibility for the integrity of the data and the accuracy of the data analysis and approved the final manuscript.
Funding The Netherlands Organisation for Scientific Research (NWO, The Hague; VICI 916.96.628).
Competing interests MH received an imbursement of expenses in 2015 (amount €150) for analysing the data for the annual report 2014 of Foundation De Einder.
Ethics approval VU Medical Center Medical Ethics Committee.
Provenance and peer review Not commissioned; externally peer reviewed.
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