Abstract
Background:
In countries where euthanasia and assisted suicide are not allowed, such as France, little is known about how a request for euthanasia and/or assisted suicide, expressed by an end-of-life patient, impacts their relatives.
Aim:
To understand the experiences of relatives of patients in the advanced stages of a serious illness, hospitalized in a Palliative Care Unit (PCU), and requesting euthanasia or assisted suicide in the French context where these practices are illegal.
Design:
We conducted a qualitative study in five French PCUs over the course of 1 year. Following the principles of grounded theory, semi-structured interviews were conducted with the relatives of patients who had explicitly requested euthanasia or assisted suicide to a healthcare professional. Two interviews were scheduled: the first within 48 h of the initial request (D1), and the second one a week later (D7).
Methods:
We conducted in-depth face-to-face interviews with relatives of patients requesting euthanasia or assisted suicide, in PCUs within a specific region of France, prior to the French Claeys-Leonetti Law. A thematic analysis of the data was performed.
Results:
Ten semi-structured interviews were conducted. Five families (patients and their relatives) were included, and eight relatives were interviewed. The discussions between patients and their relatives about requesting euthanasia or assisted suicide varied significantly from one family to another. Five main themes emerged: denouncing end-of-life conditions; the desire to have a peaceful death; the different levels of support and accompaniment for the request; values in favor of euthanasia and assisted suicide; boundaries and barriers.
Conclusion:
Requests for euthanasia and/or assisted suicide are generally understood by relatives. However, receiving and discussing such requests is a challenging and emotionally demanding task, generating significant suffering. All relatives seem to experience some degree of suffering, although its expression varies greatly between individuals. We encourage healthcare professionals to identify the nature of this suffering and to invite patients and their relatives to openly discuss these issues and to proactively address the request.
Keywords
Introduction
In the case of serious illness, some patients request euthanasia or assisted suicide (EAS) in response to their suffering and inform a relative or caregiver.1 –3 In addition to patients, families often witness the difficulties that the end-of-life brings. In this context, studies point out the vulnerability, psychological stress, and suffering of patients’ relatives.4 –6 For this reason, the support of patients and their families by healthcare professionals is part of the global definition of palliative care. 7 Although the issue of requesting EAS from the perspective of relatives or caregivers has not been adequately studied, 2 they are included in some studies. Most sources come from countries that practice one or more forms of assisted dying, such as Canada, Oregon in the United States, Switzerland, Belgium, and the Netherlands. 8
In countries that allow euthanasia and/or assisted suicide, the studies are mostly focused on the experiences of families faced with the Medical-Assisted Dying of a sick relative. These studies analyze the involvement and support of relatives before and during EAS. Some of them also point out their potential influence on the patient’s decision to resort to it.8 –11 Other works focus on the experiences of the bereaved families and show the impact of EAS on them.8,12,13 Some of these studies address multiple steps of the grieving process and offer clinical perspectives for bereavement care.
Less is known about patients—and their families—who have expressed a wish to die or requested EAS without taking action. One American study analyzed the reciprocal influence between the patient’s wish to die, the reaction of relatives, and the achievement or non-achievement of hastened death. 14 As reported, they concluded for their sample that “patients who expressed the wish to die and those who acted on that wish differed mainly in family support for hastening death.” 14 This is consistent with another study, which concluded that family resistance is a “common predictor of patients not achieving a physician-assisted suicide.” 15 Another American study compared the involvement of family members in Hastened Death in the state of Washington where assisted suicide is illegal, and in the state of Oregon where it has been adopted since 1994. 11 The researchers observed different levels of participation: refusal to participate in the process; agreement to be present on the condition that they do not participate directly; participation (receiving information, obtaining a prescription, planning the procedure, etc.). In addition, they argued that in states where assisted suicide is illegal “patients and families have the additional tasks of negotiating with healthcare providers for information and prescriptions for lethal medications, with (or without) overt support” and of “managing the environment” or “preparing back-up plans in case of complications.” 11
Even if the position of relatives is complicated regardless of the legislation, in countries where euthanasia and assisted suicide are not allowed, such as France, the question of how relatives feel about this type of request is often overlooked. 8 This study explores the experiences of family members who have to cope with such situations. Our aim was to understand the experiences of family members of patients who are in the advanced stages of a serious illness, hospitalized in a Palliative Care Unit (PCU), and requesting EAS in the French context where it is illegal.
Methods
The reporting of this study conforms to the Consolidated Criteria for Reporting Qualitative Research.16,17 The completed checklist has been provided as a Supplemental File (See Supplemental File 1).
Research team
The multidisciplinary research team was composed of five women. Two of them hold PhD (FMN as a psychologist and AC as a social anthropologist), one researcher is an MD and PhD in palliative care (MG) and two researchers hold MS degrees in human and social sciences (HT and CDC). The physician and psychologist also held clinical posts in PCUs and one researcher is a nurse (AC).
Setting and recruitment
As part of a broader research program entitled “Requests for Euthanasia and Assisted Suicide” (DESA), we carried out a qualitative study between October 2014 and November 2015. DESA is a multicenter, prospective, and qualitative study involving 11 PCUs in two regions of France. For each situation, we planned to meet three participants: (1) the patient who had made the explicit request for EAS, (2) the healthcare professional who had received the request, and (3) a relative designated by the patient. The study involved patients, relatives, and healthcare professionals, and this article only presents findings related to relatives across 5 PCUs.
We conducted in-depth face-to-face interviews with relatives of patients requesting EAS, in PCUs in one region of France, prior to the French Claeys-Leonetti Law. If they agreed, patients themselves designated family members to participate. Patients’ family members were included if they consented to participate. The names of relatives are fictional (See Table 1).
Characteristics of patients and their relatives.
EHPAD, French care home for dependent elderly people.
Data collection
Participants were sampled by convenience, and they were included gradually, as long as patients designated relatives and relatives consented to participate. Two face-to-face interviews were scheduled with the family members, one following the day of the request (D1) and the second one a week later (D7). An interview guide for the family members was drawn up based on a literature review, previous studies, and researchers’ knowledge and experiences.
The aim was to understand: (1) the family member’s initial reaction to the request; (2) their relationship with the patient and with the palliative care team, and (3) their perceptions of death, euthanasia, and assisted suicide. The guide was organized by topic and began with an opening question: “You have agreed to take part in this study regarding the request your relative made to the healthcare professional; can you tell me more about it?” (See Appendix 1). All interviews were conducted in PCU and collected in the workplace by two researchers (FMN and AC) and were tape-recorded, anonymized, and transcribed. Field notes were written during and after interviews. None of those conducting the interviews had any prior contact with the participants. They were introduced to relatives by healthcare professionals and patients themselves as clinical researchers.
Data analysis
We conducted data collection according to the principles of grounded theory. Our approach was inspired by ethnography, which aims to generate hypotheses directly from the field.18,19 A thematic analysis of the data was carried out according to Braun and Clarke’s model by three researchers (AC, FMN, CDC) who individually performed different levels of coding. 20 This analysis was discussed by researchers and validated by all the authors. Because of the sensitive issue, transcripts and results were not sent to participants. Some themes were identified in advance, others emerged directly from the field by performing an ongoing analysis. We studied heterogeneous and complex situations even though the sample of relatives is small. The study was concluded due to participant recruitment difficulties before reaching saturation (see Section “Limitations and strengths”). In order to get closer to data saturation, we used a comparative analysis method between the different groups of participants (patients, healthcare professionals, and relatives). The analysis process is fully explained in a previous article. 21
Results
Description of the sample
Eleven requests from patients were included over the course of 1 year. Among those 11 cases, we were able to meet relatives in only five situations. We were unable to include six patients’ situations because: relatives did not respond to our invitation to participate (2/6); relatives were not informed about the request (2/6); relatives were in mourning (1/6); or it was not possible to organize a face-to-face interview with the relative (1/6). Including family members in the study proved to be difficult for several other reasons (see Section “Limitations and Strengths”). Eight relatives were interviewed. In three patient situations, we interviewed two family members, while in two situations we met a single family member. A total of 10 semi-structured interviews were conducted (6 at D1 and 4 at D7). Interviews ranged from 17 to 62 min. For the second interview, patient E had passed away before day 7, so the patient and her family members were not interviewed on D7. The relatives (5 females and 3 males) were mainly sons and daughters of the patients (6/8), and all the patients included in this article were women. The demographic characteristics of the participants are summarized in Table 1.
Except for one situation, all families shared their perceptions about the support and care provided by the palliative care team. They described a positive experience despite the difficult circumstances of their meeting with healthcare professionals. Five relatives noted an improvement in the patient’s mental state and/or better management of suffering and refractory symptoms. Many relatives mentioned a “feeling of security” or “relief” for both patients and themselves since their arrival in the unit. Four of them appreciated the quality of listening and the availability of the healthcare providers, and two relatives also pointed out their competence and humanity. Relatives also described the PCU as “a privileged place” (Charles), as “an infinite chance” (Alice), or “a grace from heaven” (Debbie).
However, the role of palliative care was sometimes unclear. Alice explained to us that she and her family did not know “what is possible at the end of life” and what they could expect from the team. Although all participants knew that euthanasia and assisted suicide were not allowed under French law, two of them still hoped for a “help to die.” One patient was also confused. According to Emma, her mother was happy to be admitted to the PCU because she thought she would receive euthanasia. The participants also had very heterogeneous discourses and levels of knowledge about euthanasia and assisted suicide. Relatives did not always distinguish between the two terms, such as Debbie who said: “euthanasia, or assisted suicide, well, whatever you call it.”
The discussions about requesting EAS varied greatly from one family to another. Three families discussed the request regularly or even daily with the patient, like Danielle who said: “We talk about it every day [. . .] for Mom, we talk a lot,” while another family had not discussed it for several weeks, as Ben reported. In one situation, the relatives tried several times to talk about the request, but the patient did not want to, possibly because of the relative’s view on euthanasia: “She doesn’t really want to talk about it. There, I tried again a little but we feel that no [. . .] she knew that I was not for euthanasia, so it may also have stopped discussions” (Cathy).
In two families, there is a form of taboo regarding the request. Relatives did not bring the subject, preferring to let the patient initiate the conversation: “she brings it up, but not us. [. . .] I would never allow myself to talk to her about it directly” (Alice); “I preferred that she be the one to bring up the subject, rather than pushing her” (Ben).
Thematic analysis
The following five topics have been categorized based on the different ways family members respond to and support the patient’s request for EAS.
Theme 1—Denouncing end-of-life conditions
Relatives questioned the conditions at the end of the patient’s life and the situation was perceived as absurd or an aberration. One of the interviewed daughters said: “Well, it’s true that there are elderly people who are tired of living. So, should we grant their request? [. . .] why not?” (Debbie). Her sister also raised several questions about the terminally ill and the goal of continuous sedation: “What is aberrant is [. . .] to prolong the person [. . .] why. . . 3 more days [. . .] What does it mean [. . .] I can’t see letting the person sleep like that, well why should she die while sleeping and why they couldn’t die earlier when we know there is nothing more to do?” (Danielle).
Two relatives compared the end-of-life conditions of humans and animals: “Once again to be treated even worse than a cow and that people refused this (euthanasia), it is not human!” (Alice). The brother of a patient said: “A dog in pain, we don’t let him suffer!” (Ben).
Participants affirmed that it was not possible to leave people to die in unacceptable conditions: “Is it humanly possible to leave people like that? Knowing that she is going to die anyway” (Alice); “it’s very important because we can’t leave people like that, I mean both for the family and for them (the patient)” (Emily); “there are things that boggle my mind that humans can be capable of closing their eyes and then being capable of letting things like this happen” (Ben).
Relatives saw the end of life as senseless, which is why they denounced it without criticizing palliative care, which was described positively by all participants who mentioned it.
Theme 2—Desire to have a peaceful death
Desire for the loved-one to have a peaceful death
All the relatives wished for a calm and serene way for the patient to die. Alice said about her mother: “her only fear is dying of suffocation, and she would like not to come to that.” Another daughter believed that euthanasia would achieve a peaceful death: “a gentle and non-violent death” (Debbie). Four relatives emphasized the wish for a death without suffering, as the brother of one patient put it: “Without suffering. That it goes out like that. . . With all my might, that’s what I wish” (Ben).
Desire for a peaceful death for themselves
Relatives often argued that they should be able to decide on their own end-of-life and have more control over it. It is also a way of projecting themselves into the future conditions of their own death. This was the case for two relatives, like Alice who stated “Everyone has had cancer in my family, I know very well that there is a 90% risk of it happening to me. I don’t have children, [. . .] I will be all alone and yes, I would like to be able to tell myself that well I’m not going to die like that.” In this context, euthanasia can be seen as a guarantee. Access to EAS could have an impact on psychological functioning. It could be reassuring in the event of a complications, without necessarily having to resort to euthanasia, as Alice explained: “It’s very reassuring even if we don’t use this means of euthanasia, to know that it’s possible. And I have, we have quite a few Swiss friends who are registered in these associations then [. . .] I think it’s like 10% of the people who are registered who use it in the end but it’s guaranteed [. . .]. That it exists that it is possible if the worst comes to worst.”
Past experiences of violent death
The desire to have a peaceful death, both the patient and themselves, can be heightened by past experience of violent death and painful accompaniments. Six relatives spoke of other deaths that they had experienced in their family, and two of them described these as traumatic events. This was the case for Ben, who was 17 years old when his father died of lung cancer. He recalled his father’s choking fits as “he rolled on the ground in so much pain,” “It was a horror!.” He clearly stated that his other sister’s impending death reminded him of other difficult deaths: “I don’t want my sister to end up like that, it’s not possible, like my other sister, like a mummy!” (Ben). Another relative recounted witnessing a traumatic death in the past: “My grandmother died of suffocation, I was near her, I don’t want to experience that again” (Alice).
Theme 3—Different levels of support and accompaniment for the request of EAS
All family members understood the patient’s desire to avoid unreasonable obstinacy and the weariness of life. However, the reaction and support of relatives to the request varied. Five relatives did not share the patient’s wish to die, but they put their personal opinions aside to support the request and respect the patient’s last wishes. Arthur stated: “[. . .] I have always made a promise to my wife not to do anything that might upset [. . .] her [. . .] decision.”
This support was sometimes a source of suffering, as with Emily, who seemed to feel an inner tension between her desire to have her mother by her side and her mother’s request: “Even if she’s going to leave, I know that it’s necessary, for her it’s necessary, but for me it’s going to be very hard [cries] when she’ll no longer be here, [. . .] even if we had gone with euthanasia, I mean if we had the right, I would have accepted because even if it's hard, for her it’s the only solution, there are no other solutions [. . .].”
One relative shared the patient’s wish for euthanasia, out of fear of a violent death and because it was hard for him to continue providing support. Ben prayed for his sister to die peacefully and at the same time questioned the temporality of the request by saying: “I think that even if she wanted euthanasia right now, she wouldn’t be completely ready.”
Finally, in one family, there was a gap between the values of the relatives and those of the patient. Charles accepted euthanasia under certain conditions, particularly in the case of his mother’s deterioration, which he considered unacceptable (“I didn’t want her to hang around like a vegetable [. . .]. That was the limit”). In contrast, his sister Cathy understood the weariness of life but did not accept the repeated requests: “Well, I understand [. . .] that she’s tired of living [. . .]. But I don’t think she should ask me to do certain things that I don’t agree with!”
Theme 4—Values in favor of EAS
In our sample, we found that some relatives supported the patient’s values, and in some cases, even claimed a right to die. First, four relatives mentioned the right to self-determination: “Of course, as Mom says, we have the right to. . . to dispose of your life as we want it” (Danielle); “[. . .] to have a choice, a freedom of choice, it is a matter of Free Will” (Alice); “When people ask for it and when they’re conscious, it’s their life, it belongs to them, [. . .] when you reach a point where you know there’s no hope and you’re suffering, then I think we should have the choice” (Ben); “[. . .] I’d say everything can be defended as a position, now everyone. . . everyone sees for themselves above all” (Debbie).
For two relatives, euthanasia and assisted suicide were not in conflict with compassion. Debbie saw it as an expression of love, and Ben considered it humane when it comes to a loved-one: “I think it’s also an act of love that you can do for your neighbor [. . .]” (Debbie); “[. . .] that doctor who went on trial [. . .] what he did was humane! [. . .]. When you love someone, you don’t want it to last [. . .]” (Ben). On the other hand, refusing euthanasia and assisted suicide (when a relative puts their personal values above the patient’s wishes) was seen as selfish by two of them. Ben referred to a French court case: “this young man who’s in a coma, his parents don’t want to turn off his life support, [. . .] for me it's selfish.” Danielle spoke more generally: “Yes, I think it’s not love, it’s selfish.”
Finally, four relatives explicitly demanded the right to die. Alice, a lawyer, described euthanasia as a right to dignity and the freedom to dispose of one’s own body, and like Danielle, she compared it to the right to abortion: “it’s a subjective right of the person, it’s also part of the right to dignity. It’s a well-founded right [. . .] to physical integrity. You have the right to have an abortion [. . .]” (Alice); “like a woman who had an abortion before, she had to keep it quiet, [. . .] the right to die means being able to die with loved-ones, without being exiled somewhere. [. . .] It would be much better if [. . .] assisted suicide existed, and we could carry it out with the person calmly, serenely [. . .] in complete legality, without being at the limit of illegality all the time!” (Danielle).
Theme 5—Boundaries and barriers
The majority of relatives who were in favor of EAS would agree if it were permitted in France, like Debbie: “But if it were possible to do it right here, we’d say yes.” Five of them also thought about taking steps abroad at the patient’s request, in Switzerland or Belgium, like Alice: “That’s her, she asked me to go and look at all the websites. Switzerland and Belgium, it was on her initiative that I took all these steps that did not succeed.”
Indeed, all five relatives who considered it found the procedures unsuitable. Three participants pointed to the lengthy and cumbersome nature of the administrative procedures; two others noted that the patient’s condition did not allow them to travel to a foreign country where EAS is practiced. Two participants referred to the financial constraints. Ben mentioned the high cost of assisted suicide in Switzerland, which he said he could not afford even though he would like to. Arthur criticized greed and bureaucracy: “I must say that we had almost turned to Switzerland [. . .] where legislation was much more advanced than in France [. . .] And then we realized that there was a very mercantile side to the whole thing. It wasn’t the cost that was the problem, but it was unpleasant to think about their relationship with money. Then [. . .] it was consultations, again, you had to do a whole medical file. It’s hard enough as it is, so starting from scratch in a foreign country.”
The two sisters sought support in France from a pro-euthanasia association. Indeed, Danielle and Debbie, along with their mother, joined the French “Association for the Right to Die with Dignity” (Association pour le Droit de Mourir dans la Dignité). In another case, the persistence and repetition of her mother’s requests led Alice to consider transgressive alternatives: “We’ve already thought of everything. Buying weapons. . . My friend is a farmer, we’ve already made inquiries with [. . .] the vet. . . We think of everything. I was thinking of going to the street to look for heroin. I don’t know, we think of everything! To relieve her at the last moment.”
Lastly, while legal EAS was a conceivable scenario for some relatives, participation in clandestine euthanasia was unthinkable, no matter what they thought about assisted dying: “We don’t want to kill her directly ourselves” (Alice); “I won’t give her a shot to make her go away [. . .]” (Cathy); “[. . .] she told me '’it’s for my own good’,” I said “yes, but Mom, I can’t. . .I said ‘It’s not possible! Even if you’re suffering, I know it, but I can’t. I can’t, I can’t, the guilt will be too great even if I know you’re suffering, I just won’t be able to do it!” (Emily).
Discussion
The results of this study complement previous publications21,22 and show that relatives seem generally understanding of the patient’s wish for EAS. In our study, only one relative disagreed with the patient’s request, although she understood the reasons behind it. This position can mainly be explained by the fact that the relative opposes euthanasia and assisted suicide on principle. This clash of values between the patient and the family member significantly hinders communication, as the request is no longer discussed within the family. The long-standing nature of the patient’s request, which has persisted for over a decade, may also contribute to this situation.
On the other hand, our study shows that in five instances, relatives support the request for euthanasia and/or assisted suicide, out of respect for the patient’s last wishes, even though they do not want the patient to die. Some of them put aside their personal beliefs without agreeing to the request, in order to prioritize the values of the patient. This led to inner tensions and suffering, either due to silence or a feeling of “giving in.”
Other relatives support the request after being convinced of its legitimacy by the patient, to the point where they became advocates for euthanasia and assisted suicide themselves. This alignment of values between the patient and the relatives seems to be the result of regular exchanges. As reported in two other studies, relatives believe that they must respect the patient’s last wishes regarding assisted dying 15 and it appears that “personal values and the respect of values of others played an essential role.” 23
Ultimately, two family members agreed to the request because euthanasia did not conflict with their personal values and beliefs as long as certain conditions were met, rather than out of a desire to respect the patient’s last wishes. These symbolic limits concerned the moment of dying (such as “turning into a vegetable” or entering the agony for one) or the way of dying (the other relative preferred a peaceful death, whether natural or induced, due to a strong fear of a violent death).
These four different positions highlight the varying ways in which the request expressed by the patient is received by the family. The analysis of the relatives’ discourse also reveals that family members often question and/or denounce end-of-life conditions. We can assume that by denouncing these conditions, they are attempting to reassert their role in the situation. Witnessing a loved-one’s end-of-life without being able to help is extremely challenging and distressing for relatives. By actively bearing witness to these conditions, they may gain a sense of agency and control. Acting as a spokesperson likely helps them feel more aligned with the patient, envisioning a more desirable outcome and hoping for better recognition of the patient’s unbearable suffering. 21
Relatives also frequently express a strong desire to avoid a violent death or to have a peaceful death, or what Michel Castra called “a pacified death” 24 for both the patient and for themselves (by anticipating their own end-of-life and dying), leading them to consider euthanasia and assisted suicide. This is consistent with a recent systematic review, which concluded that: “witnessing the patient’s suffering becoming unbearable over the illness experience represented for family members a key motivator to agree with their request of assisted dying.” 23 Additionally, witnessing the violent death of a loved-one has been a compelling reason for some relatives to support or even advocate EAS.
It appears that many relatives advocate for the right to die, by mentioning principles of self-determination, dignity, or freedom to dispose of their own body. This observation complements our earlier finding that patients seek to reclaim a sense of freedom despite medical constraints. 21
Sometimes, euthanasia and assisted suicide are seen by relatives as an act of humanity, love, or compassion, and they feel that refusing it would be selfish. This perspective aligns with the findings from other studies.25,26 Moreover, both relatives and patients sometimes consider transgressing legal restrictions 21 by contacting pro-euthanasia organizations, exploring cross-border alternatives, or considering facilities in countries where euthanasia and/or assisted suicide is permitted, even if these options seem inappropriate to them.
This leads us to believe that relatives experience suffering in all cases, although the nature of this suffering varies greatly from one person to another. It can manifest as a breakdown in family communication, a clash of values, anxiety about a violent death, a feeling that it is becoming unbearable to pursue end-of-life support, despair due to the patient’s repeated requests in a context where euthanasia and assisted suicide are illegal, or inner tensions caused by prioritizing the patient’s values over their own feelings.
In this context, relatives may denounce end-of-life conditions without criticizing the PCU, because they are both afraid of a violent death and unsure of what to expect from palliative care. Therefore, we encourage healthcare providers to clearly explain the objectives of palliative care to both patient and relatives, clarifying options for the patient (such as respecting the choice to refuse or stop treatment, providing exclusive symptomatic care without treatments aimed at overcoming future complications, reassuring them about optimal symptom management, and, if necessary, considering deep and continuous sedation).
Moreover, it is essential to build a trusting relationship with patients and their families, and to maintain an attitude of empathy and availability toward them. Healthcare professionals could also proactively engage in a discussion about the desire to die and address it, as suggested by Kremeike et al. 27 Being proactive means openly and honestly asking about the wish for death, in an appropriate environment, with sufficient time for active listening and to facilitate the expression of emotions, overcoming personal or team-related taboos, and exploring the reasons behind the wish to die (pain, suffering, fear of violent death, loss of meaning, etc.). In doing so, professionals could better support patients and their relatives, with an approach more focused on the request. 28 They could also play a mediating role, facilitating discussion between the patient and relatives, and improving the quality of life of those facing physical, psychological, social, and spiritual challenges associated with life-threatening illnesses.
Limitations and strengths
In terms of limitations, it appears that the patients’ fragile health and the psychological vulnerability of bereaved families affected the study period and limited the number of interviews. This sample is relatively old, as the study was carried out between October 2014 and November 2015, prior to the 2016 Claeys-Leonetti Law, which introduced new rights regarding palliative care in France. Including family members in the study was difficult due to a lack of response, insufficient information about the study, and the few relatives designated by the patients. Inclusion was dependent on healthcare professionals transmitting the request to the research team, and researchers had limited access to patients and their families, which may have been a barrier to recruitment. The study was concluded due to participant recruitment difficulties before reaching saturation. Although our study followed participants at 1-week intervals, we were not able to follow changes after that timeframe. Family members who participated in our study may have been more likely to support euthanasia and assisted suicide, compared to those who were not designated by patients. For this reason, we may have missed the perspectives of those who were more ambivalent, opposed, or private in their opinions about euthanasia and assisted suicide. This presents a specific population, as all patients included in this article were female aged more than 65 years. Some personal histories raise questions about what people have experienced, as well as family history or relationships, and perhaps other samples could have changed that.
In terms of strengths, this study contributes to understanding the broader context in which patients request euthanasia and/or assisted suicide. It also provides valuable insights into the experience of family members facing such requests, including their reactions toward the request, representations of death, and convictions regarding euthanasia and assisted suicide. Furthermore, this work sheds light on the diversity of suffering that family members may encounter in these specific situations. It also provides significant insights into a palliative care population that is generally difficult to access and involve in research. Unlike most international studies on this subject, this paper provides an understanding of how a request is expressed, received, and managed by family members in a context where euthanasia and assisted suicide are not permitted.
Conclusion
Participants in our study described their experiences with a patient who requested euthanasia and/or assisted suicide, in a country where it is not allowed, and during a time prior to the Claeys-Leonetti Law, when no alternative options were offered. Many relatives denounced end-of-life conditions as senseless, driven by fear of a violent death and confusion about the role of palliative care. Relatives often supported their loved-one’s request, invoking concepts such as self-determination or dignity. However, discussing such requests is emotionally challenging, causing significant suffering for relatives and impacting both individual and familial well-being. Relatives sometimes attempted to manage the request to not leave the patient in a situation they both considered unbearable, which added to their distress. We encourage healthcare professionals to proactively discuss these requests, identify and address the associated suffering, and provide support for patients and their families to strengthen palliative care.
Supplemental Material
sj-pdf-1-pcr-10.1177_26323524241308267 – Supplemental material for Requesting euthanasia or assisted suicide when it is illegal: a qualitative study about relatives’ experiences of patients hospitalized in French Palliative Care Units
Supplemental material, sj-pdf-1-pcr-10.1177_26323524241308267 for Requesting euthanasia or assisted suicide when it is illegal: a qualitative study about relatives’ experiences of patients hospitalized in French Palliative Care Units by Camille De Cock, Florence Mathieu-Nicot, Hélène Trimaille, Mathilde Giffard and Aline Chassagne in Palliative Care and Social Practice
Footnotes
Appendix
Acknowledgements
The authors thank all the patients, healthcare professionals, and relatives who participated to this study. They appreciate all the help provided by the doctors and nurses they met and thank them for the time they kindly gave us. They especially thank Professor Régis Aubry, Elodie Cretin, and Lionel Pazart, who initiated this work, and our colleagues at Maison Médicale Jeanne Garnier (Paris), especially Danièle Leboul. They also wanted to thank Renaud Vachel and Laura-Lee Sudrat for the help provided for the translation of this article.
Declarations
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References
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