Participant characteristics are described in Additional file 1: Table 2. Between January and April 2016, twenty-seven professionals were contacted to participate in this study. Only one did not answer our request, therefore twenty-six people participated altogether. This included four physicians, one nurse, one physiotherapist, one nurse’s aid, two psychologists, one social worker and two hospital chaplains of a palliative care unit. In addition, we interviewed six volunteers from a Swiss “right-to-die organization” (EXIT Suisse Romande), one physician and three nurses from a palliative care mobile team, two general practitioners and a nurse, as well as the person responsible for recreation in a retirement home. The participants varied in gender, age and years of experience.
Professionals’ perspectives on existential suffering as a reason for requesting assisted suicide
Providers from palliative care and primary care, as well as volunteers from EXIT, described existential suffering in a multiplicity of very individual ways. In total, they recounted sixty-three stories. When referring to existential suffering, most of them described a life that wasn’t worth living any longer and/or a life that did not make sense anymore, for many different reasons. The coding of their statements resulted in eight categories that were ranked according to the frequency of their occurrence: physical decline and its consequences, loneliness, fear of the future, life is over, loss of social significance, loss of hope for a better future, being a financial burden, and loss of pleasurable activities (Additional file 1: Table 3).
Physical decline and its consequences
A vast majority of the participants referred to experiences regarding physical decline and feelings that can result from this decline. The codes grouped in this category are thus: physical decline itself, dependency and hurt self. Each of those includes sub-codes that are listed in Additional file 1: Table 3.
Physical decline itself and dependency were the two most represented codes in this category. Below is an example of how physical decline can lead to a request for AS:
“( …) but finally the problem (for her) was the anal incontinence, she didn’t want to continue (living) so she asked us (to assist her) and told us: “Now it’s my limit. I am already blind, deaf, I can’t move anymore and now this (the incontinence). That’s enough!”” (P19/EV).
According to this participant, the reason why this person wanted to die was because of a too damaged physical condition. Actually, most of the participants considered physical decline as being a trigger for existential suffering, in that it induces dependency, pain, loss of pleasurable activities, hurt self or loss of hope. Moreover, we found that the idea of dependency was always linked to physical decline and this is why dependency was included in this category. A palliative care provider illustrates it:
“On the other hand, I had the feeling that for this woman, beyond a certain limit, it was no longer acceptable. She was too damaged, too dependent. You could see it. So, she preferred stepping down before becoming too dependent on nursing.” (P15/PallCP).
This quote shows that dependency was actually considered by this participant as unbearable. It was relevant in many other testimonies.
Participants also pointed out the fact that dependency can induce a diminished perception of someone’s own image and that suffering originates from this feeling. “Hurt self”, one of the codes in this category, is illustrated in the following example:
“The caregivers also play an important role because they frequently are the confidants of patients during the bathing, during their physical activities. It’s often here that patients talk about their suffering regarding their loss of autonomy, their physical decline. It’s often what we hear. One’s self-image also plays an important role in this kind of decision. Patients often tell us: « I don’t recognize myself ».” (P16/PallCP).
“I don’t recognize myself” puts into question the notion of self-identity and it was actually always mentioned this way. This statement signal the role of one’s image or physical appearance defining one’s identity. All participants spoke of deteriorating physical appearance as inducing a loss of one’s self identity. Another participant expresses it differently while talking about an illness that can be the turning point of a change in self-identity:
“There is a relevant element. It’s that often the illness, the severe illness, irrupted into these people’s life and this constituted a threshold. And rightly there often is a fracture between the “before of who I was once” and the “now” where people often take an « ill person » identity. And their identity is now limited to the issue of being ill.” (P8/PallCP).
When participants talked about physical decline, dependency or hurt self, there was another relevant idea to point out. The fact that all the sufferings induced by those conditions can be partly explained by how people perceive them. Here is an illustration by one palliative care provider:
“( …) I’m convinced that the way society perceives those people who are not productive anymore, ( …), with cognitive trouble, (those people) becoming a financial burden and the ones becoming diminished or incontinent, is a problem.” (P10/PallCP).
This notion that how people perceive old age or dependency is to some extent responsible for those multiple and different types existential sufferings was recurrent.
Loneliness was the second most mentioned component of existential suffering with nearly two-third of participants who talked about it. According to many participants, loneliness seems to be a significant cause for requesting AS. This is illustrated by a general practitioner talking about one of the last discussions she had with one of her patients:
“( …) and I told her "I’d just like to know something honestly. If you were with children, grandchildren, would you do that? (request AS). She told me “Surely not”; and I told her “So, it is really (because of) loneliness?” And she told me “Yes”” (P24/PrimCP).
Loneliness was also often described as a loss of human contact. A hospital chaplain talked about solutions that could be proposed to people demanding AS due to existential suffering in these terms:
“So, I think of the possibilities, of activating a greater human proximity, because it’s actually often what is lacking. This lack of connection, this lack of contact. But it is also because this is what people often wanted. Because they arrived to this type of loneliness.” (P5/PallCP).
She actually referred to a kind of “chosen loneliness” contrary to the one induced by the loss of a loved one. Another participant illustrates it:
“She didn’t necessarily have pain, but it’s true that her treatment was quite heavy for her. And in addition, the fact that she was deeply mourning her husband. So, it’s true, I don’t know what exactly motivated her wish to commit suicide”. (P6/PallCP).
This palliative care provider did not exactly understand why his patient requested AS but suggested that loneliness might be partly responsible for it.
Fear of the future
The codes of this category are: fear of a terrible agony, fear of being placed into a retirement home, fear of the unknown, fear of the hospital and anxiety. The fear of an imagined agony was linked most of the times to past experiences, as a nurse put it:
“By digging a bit what was worrying him, it was the memory of his spouse who died from an oncologic illness. She was very young at the time and she was screaming out in pain. And he was leaving the house in order to not hear her screaming out of pain. This had a big impact on him. His fear was really linked to the fact that medicine couldn’t address many of the symptoms, pain in particular.” (P11/PallCP).
The fear of being placed into a retirement home was also expressed a few times and was often linked to the fear of physical decline and dependency as a general practitioner explained:
“( …) and they had talked about a placement in a retirement home. And I’d say that for many elderly persons this is something, this placement in a retirement home is a “bête noire”. Because it means total decline for them.” (P25/PrimCP).
The other codes within this category were less salient but taken together they pointed to the fact that sufferings were emerging here from a kind of fear of going on living in a state of unbearable decay. Not only was there a fear of potential future suffering but this anticipation itself was a source of current suffering that would lead to a wish to die.
Life is over
This category was mentioned by more than one-third of the participants. It was often described as being tired of life. Although it was often linked to other sufferings, it needed to be differentiated because it really referred to a fully aware reasoning: “My life has come to an end”. Here an example:
“He tells me: “Do you understand? My world shrinks, you can do whatever you want. ( …) I know that I will be soon coming to an end. I hope everything is going to be alright and that someone will help me if not.” This is an objective observation. He is 91 years old.” (P20/EV).
It is in this category that we found what we can call a kind of “pure” existential suffering. A suffering without identification of any other related ones. Only four of twenty-six participants talked about it and it was described in four out of sixty-three stories. An EXIT volunteer illustrated it:
“But it concerns more the people in the retirement homes. Except this woman who clearly said that she didn’t want to find a spouse again and that her life was finished. That she had a beautiful life, with her husband, that she had raised her children, that she had grandchildren who were going well. So she had done it all and said “so I can leave now””. (P19/EV).
It sounds like this woman had accomplished what she had to and was ready to die. No physical decline, no dependency. A little bit of loneliness maybe.
Loss of social significance
Loss of social significance was mentioned by eight out of twenty-six participants and was especially described as a feeling of uselessness. Here is an illustration of how this feeling could be experienced as a deep suffering:
“I also think that there is something else we didn’t talk about: this feeling of uselessness. Everything that refers to « me feeling useful », or « me feeling useless », « not serving purpose », is a big suffering.” (P5/PallCP).
The loss of usefulness in family and society was described by participants as linked to the process of aging. And, as mentioned before for the code “Hurt self”, many participants pointed out the fact that society, our culture, might be partly responsible for these feelings such as expressed by a primary care provider:
“( …) the big existential suffering for many people is this feeling of useless (ness). It doesn’t happen in the cultures where elderly remain integrated in the family, where they can even look after the grandchildren or participate in the activities. Those people (in Switzerland) are lonely.” (P25/PrimCP).
Loss of hope for a better future
Loss of hope for a better future being a cause of a life that is not worth living anymore had the same relevance as the loss of social significance. As one can imagine, the description of what a better future is, is highly personal and plural. This category refers to a feeling that the future will be worse than the present life. Here is an example of a conversation between an EXIT volunteer and someone he helped to die:
“Well, I have to (request AS).” And I told her: “How is that? Why do you have to?” And she told me: “Yes I have to because I don’t have remission anymore.” Yes, it’s true. “Her diagnosis was clear, her remission was finished, her disease reappeared and she did not want to live through that.” (P19/EV).
This woman wanted to requested AS because all she could expect from this point was suffering.
Being a financial burden
The fact that being a financial burden could be a cause of existential suffering and lead to a AS request was stated by six out of twenty-six participants. It was often described as one more form of suffering on top of an already distressful daily life. Like other categories and codes, being a financial burden was described as closely related to the way society perceives old age, dependency or physical decline such as explained by an EXIT volunteer:
“what those people generally fear is loneliness, and the fact of becoming a burden and being a high cost to society, as we can hear it and read it in newspapers. They also talk about this, and I always tell them “It’s not a reason. You worked; you don’t have to worry because you are expensive. You’re no more expensive than anyone else.”” (P18/EV).
This participant highlights the fact that the concern of becoming a burden might be caused by media’s perception in these people.
Loss of pleasurable activities
The loss of pleasurable activities was the least mentioned category and was often linked to other categories. However, it was important to highlight it because the loss of pleasures and joys of life was directly described as leading to a life that isn’t worth living anymore. Here is an illustration:
“She found that it was not enough to be more or less fit again. And, above all, she gave up visiting Museums in Europe and she loved to do this in the past. So, she came back one day to terminate her life simply because her goals in life couldn’t be achieved any more. Because of physical or psychological problems.” (P12/PallCP).
In the story of this patient, life wasn’t worth living any longer mainly because her condition prevented her from enjoying museum visits, which used to be the greatest pleasure in her daily life. Hence, life did not make sense anymore for her.