Analyzed the data: CM AB VM. Contributed reagents/materials/analysis tools: CM AB JT VM CV. Wrote the paper: CM AB JT VM CV. Conceived and designed the study: CM AB. Performed the systematic search and study selection: CM AB. Quality Assessment: CM AB. Applied synthesis method: CM AB.
The authors have declared that no competing interests exist.
There is a need for an in-depth approach to the meaning of the wish to hasten death (WTHD). This study aims to understand the experience of patients with serious or incurable illness who express such a wish.
Systematic review and meta-ethnography of qualitative studies from the patient's perspective. Studies were identified through six databases (ISI, PubMed, PsycINFO, CINAHL, CUIDEN and the Cochrane Register of Controlled Trials), together with citation searches and consultation with experts. Finally, seven studies reporting the experiences of 155 patients were included. The seven-stage Noblit and Hare approach was applied, using reciprocal translation and line-of-argument synthesis. Six main themes emerged giving meaning to the WTHD: WTHD in response to physical/psychological/spiritual suffering, loss of self, fear of dying, the desire to live but not in this way, WTHD as a way of ending suffering, and WTHD as a kind of control over one's life (‘having an ace up one's sleeve just in case’). An explanatory model was developed which showed the WTHD to be a reactive phenomenon: a response to multidimensional suffering, rather than only one aspect of the despair that may accompany this suffering. According to this model the factors that lead to the emergence of WTHD are total suffering, loss of self and fear, which together produce an overwhelming emotional distress that generates the WTHD as a way out, i.e. to cease living in this way and to put an end to suffering while maintaining some control over the situation.
The expression of the WTHD in these patients is a response to overwhelming emotional distress and has different meanings, which do not necessarily imply a genuine wish to hasten one's death. These meanings, which have a causal relationship to the phenomenon, should be taken into account when drawing up care plans.
For several decades now, clinicians and researchers have shown a growing interest in analysing the wish to hasten death (WTHD) in the context of serious or incurable illness. This phenomenon seems to affect a considerable number of patients, especially those facing the end of life or advanced stages of their illness
One of the difficulties faced by any clinical study of the WTHD is how to define the concept. Indeed, studies have not distinguished clearly between a general wish to die, the wish to hasten death and requests for euthanasia or physician-assisted suicide
In addition to this lack of consensus regarding the conceptual definition and terminology of the WTHD, another aspect to consider is that the phenomenon tends to vary over time, depending on the stage or circumstances in which patients find themselves
Another fundamental aspect that has been studied in relation to the WTHD is its aetiology. Factors addressed by research include pain
Although quantitative research may provide highly valuable information about the WTHD it is difficult for such methods to fully penetrate the complex reality experienced by the patient who wishes to die
The aim of the present study was to analyse, through an interpretative systematic review of qualitative studies, the meaning and motivation of the WTHD in patients with chronic illness or advanced disease
Systematic review and interpretative synthesis, following the meta-ethnography approach developed by Noblit and Hare
The criteria for sample selection required that the original studies described the ‘wish to hasten death’ in patients with a diagnosis of chronic or advanced disease, and that the data of these primary studies were gathered from the patient's own perspective. No language restrictions were placed on the search. In accordance with our protocol, which was designed a priori, the original reports had to have been conducted using a qualitative approach in relation to both data collection and data analysis
Studies were identified primarily through protocol-based systematic searches of relevant electronic databases using terms and text words from Medical Subject Headings (MeSH). The MeSH terms used were ‘
1. Desire to hasten death/ | 30. Field studies/ |
2. Wish to hasten death/ | 31. Theoretical sample/ |
3. Euthanasia/ | 32. Discourse analysis/ |
4. Assisted Suicide/ | 33. Focus groups/ |
5. Decisions end of life/ | 34. Phenomenology/or ethnography/or ethnological research.mp. [mp = title, subject heading, abstract, instrumentation] |
6. 1 or 2 or 3 or 4 or 5 | 35. (qualitative or phenomenol |
7. Chronic disease/ | 36. (grounded adj (theor |
8. Chronic illness/ | 37. (constant adj (comparative or comparison)).tw. |
9. Advanced disease/ | 38. (purpos |
10. Advanced illness/ | 39. (focus adj group |
11. Advanced cancer/ | 40. (emic or etic or hermeneutic |
12. 7 or 8 or 9 or 10 or 11 | 41. (data adj saturat |
13. 6 and 12 | 42. (participant adj observ |
14. Qualitative studies/or qualitative | 43. (Heidegger |
15. Interviews/or interview |
44. (van adj manen |
16. Case stud |
45. (van adj kaam |
17. Case studies/or case study | 46. (merleau adj ponty |
18. 14 or 15 or 16 or 17 | 47. (Husserl |
19. 13 and 18 | 48. (field adj (study or studies or research)).tw. |
20. Qualitative Studies/ | 49. (lived adj experience |
21. Phenomenological Research/ | 50. Narrative analysis.tw. |
22. Ethnographic Research/ | 51. Discourse |
23. Ethnonursing Research/ | 52. Human science.tw. |
24. Grounded Theory/ | 53. Life experiences/ |
25. Exp |
54. Convenience sample/ |
26. Purposive Sample/ | 55. Exp |
27. Exp |
56. Or/14–55 |
28. Content analysis/or thematic analysis/ | 57. 6 and 56 |
29. Constant comparative method/ | 58. 12 or 57 |
Key to abbreviations as used in Medline (PubMed):
, truncation; tw, text word; adj, adjective.
The lead researcher (CM) carried out the systematic literature search, which was then verified by another researcher (AB), who is an experienced systematic reviewer. The retrieved citations were sifted in three stages, as in a systematic review of quantitative studies. CM was responsible for reviewing the 191 citations retrieved, first by title, second by abstract and finally by full text. Studies were excluded when they did not meet the inclusion criteria. The results of this search were then fed back to another researcher (AB). Disagreements were resolved by discussion between the two reviewers and through reference to the full article. Finally, the research team agreed on the studies (n = 7) that should be included in the synthesis.
Studies were excluded if they were insufficiently focused on the topic and if the data were not gathered from the patients' perspective, although studies were included if they gathered data from the perspective of both patients and their family (only one of the selected studies). Studies were also excluded if they used qualitative data collection methods but not a qualitative method of analysis.
Although a wide range of quality assessment tools have been applied to qualitative studies
Reporting Criteria (CASP) | No (n = 7) | References of studies reporting each criterion |
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7 | |
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7 | |
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7 | |
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7 | |
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6 | |
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7 | |
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7 | |
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7 | |
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7 | |
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6 | |
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3 | |
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5 | |
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7 | |
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5 | |
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3 | |
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5 | |
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6 | |
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7 | |
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5 | |
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6 | |
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3 | |
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7 | |
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- | - |
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7 | |
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4 | |
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4 | |
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7 | |
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7 | |
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7 | |
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5 |
For a number of reasons no studies were excluded on the basis of quality. Some authors, such as Dixon-Woods et al.
This research did not require the approval of our local ethics committee, since all the studies included in the review were already approved by their respective ethics committee.
The seven qualitative studies were synthesized using Noblit and Hare's
Themes/– Categories | Quotations from participants in primary studies | Interpretations of findings offered by authors |
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– Loss of function | ‘Um, the ability to perform simple things like you know, going to the bathroom on your own and not through a bag, um, breathing with your own lungs, not dependent upon a machine to keep the body parts functioning, um being able to do anything, I mean as long as you can think then you can live, but if you can't no longer even formulate a thought due to dementia or you know the ravages of the disease. You know, if you were to stand there in your former self, would you want to see yourself in that position? I know I wouldn't. You get to the point where there's no return, you know, I can understand somebody saying, well geez, you know, like I used to be somebody, but now, like I mean, you know, I'm no better than like a doll, somebody has to dress me and feed me and I guess it's uh, I don't know how to explain it, really’ |
Loss of self. |
‘There were many times when I was in such pain and such misery. I said, let me go… finished…no more of this torture’ |
The immediate situation was unendurable and required instant action. | |
‘You don't know how much I am suffering. Come and deal with me; I need your attention and help’ |
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‘You turn them over, they're in pain. They're going to shit themselves, they're going to piss themselves, they're going to lie there and have someone do all their bodily functions and just, they're going to suffer, the whole time, there's going to be no happiness, they're going to go down to 60–70 pounds, they're just going to, their whole last weeks of life is just going to be pain and agony and people coming in, people being upset, them being upset’ |
Disintegration. | |
‘I'm inconveniencing, I'm still inconveniencing other people who look after me and stuff like that. I don't want to be like that. I wouldn't enjoy it, I wouldn't, I wouldn't. No, I'd rather die’ |
Disintegration. Symptoms and loss of function can give rise to dependency on others, a situation that was perceived as intolerable. | |
‘I can't move, just lie here… feeling like a vegetable…a useless person… needing people to feed me’ |
Perception of suffering for self and significant to others. | |
‘…the terrible weakness and the nausea and just not feeling like you can do anything. …And it's kind of like goals that I actually have or things that I want to accomplish are slowly being taken away… it's kind of like the realm of the possible…is shrinking’ |
Feeling weak, tired and uncomfortable. Illness-related experiences. | |
‘There have been times I've felt so much a burden on my family that maybe it is best for me to die just to relieve them of going through the terminal phase of my disease’ |
A gesture of altruism. | |
‘There were many times when I was in such pain and such misery. I said, let me go… finished…no more of this torture’ |
The immediate situation was unendurable and required instant action. | |
‘You don't know how much I am suffering. Come and deal with me; I need your attention and help’ |
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– Loss of control | ‘In the future when I can't manage, I would feel very bothersome and very suffering as if I'm really burdening them. I'm afraid of having others to serve me’ |
Anticipation of a future worse than death itself. |
‘…if I'm going to be rolling around in my own faeces because I have no control, then forget it’ |
Loss of self. | |
‘Dignity is that I have control over my body, when, when, not not a virus that is going to take my life. I'm the one who's going to decide when my life will end, not a virus, and not with great pain. Not anything else other than in, in my control. It is my control, my choice to do’ |
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‘When I'm in pain, it is not so much the pain, it's the loss of control and the helplessness’ |
Desire to hasten death as an expression of despair. | |
‘I will do things my way and the hell with everything and everybody else. Nobody is going to talk me in or out of a darn thing…what will be, will be; but what will be, will be done my way. I will always be in control’ |
Desire for control. | |
‘In the future when I can't manage, I would feel very bothersome and very suffering as if I'm really burdening them. I'm afraid of having others to serve me’ |
Anticipation of a future worse than death itself. | |
– Sense of ‘loss of dignity’ | ‘I think we should all be allowed to die with our dignity intact’ |
Participants' experience of disintegration. |
‘No matter how much they love you, you are always a burden. You automatically become a burden to everyone. Even to your own missus’ |
Being perceived as a burden to others. | |
‘…not wanting to be seen by those that love me as this skin-and-bone frail, demented person. In other words, I don't want that image of me for me, and I don't want that image to be kind of a last image that my daughters and loved ones have of me. And that's just a dignity issue’ |
Loss of sense of self. | |
‘I'm not comfortable, and I can't do anything, so as far as I'm concerned in quality of life I'm not living; I'm existing as a dependent non-person. I've lost, in effect, my essence’ |
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‘Oh, it's the dignity and wholeness of my body, as well as spirit. And, it is, it's cruel too for others to have to do this when there's no end in sight, other than death. To just, to clean me up. I just don't want that…’ |
Loss of self. | |
‘After a while, your family, who you love so dearly, will remember you as a washed-out role model… It will remind them of what they have to go through, the lack of strength, the weakness, and so forth’ |
The dying process itself was so difficult that an early death was preferred. | |
‘You've become a bag of potatoes to be moved from the spot to spot, to be rushed back and forth from the hospital, to be carried to your doctors' appointments or wheeled in a wheelchair, and it really does take away any self-worth, any dignity, or any will to continue to live’ |
Disintegration. | |
‘I think we should all be allowed to die with our dignity intact’ |
Participants' experience of disintegration. | |
– Loss of meaning | ‘There's not any good reason for me to go on living. Nobody really needs me… I'm really not serving any purpose. If you don't, aren't needed by anybody, you kind of have a different feeling about life’ |
Psychosocial factors (useless, boredom, burden, lack of enjoyment in life) motivating the serious consideration of a hastened death. |
‘I'm just saying to myself when I go to sleep, ‘Just let me die.’ I don't want to have to wake up and face this… honestly I just pray that I would just die in my sleep. I have nothing to live for, absolutely nothing. There's nothing coming up in my life that I am living towards, and if there was it would be so terrible because it probably wouldn't happen’ |
Desire to hasten death as an expression of despair. | |
‘One daughter explains about her mother: “The things that were meaningful to [my mother] in her life were her art, her ability to do her art and her friends, and spending time with her friends and cooking and eating. And she was…very convinced that when she couldn't do any of those things anymore, her life would be meaningless, and she wouldn't want to live anymore’ |
Loss of function. | |
‘There's not any good reason for me to go on living. Nobody really needs me… I'm really not serving any purpose. If you don't, aren't needed by anybody, you kind of have a different feeling about life’ |
Psychosocial factors (useless, boredom, burden, lack of enjoyment in life) motivating the serious consideration of a hastened death. | |
‘I'm just saying to myself when I go to sleep, ‘Just let me die.’ I don't want to have to wake up and face this… honestly I just pray that I would just die in my sleep. I have nothing to live for, absolutely nothing. There's nothing coming up in my life that I am living towards, and if there was it would be so terrible because it probably wouldn't happen’ |
Desire to hasten death as an expression of despair. | |
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– Fear of dying process | ‘It'll be extremely terrible. It'll be coming up from there, just everywhere. I mean the complications and that would give me so much pain and suffering. I anticipate the future would be like this. Very severe, very scary when I think about it’ |
Anticipation of a future worse than death itself. |
‘I, I fear some of the, uh, some of the physical stress that may come in the course of my dying. Nobody chooses to die little by little. At least, I can't visualize that’ |
Factors motivating the serious consideration of a hastened death. | |
‘I can't bear the dying process so I'll short circuit it by dying’ |
The dying process itself was so difficult that an early death was preferred. | |
‘I don't want to go through the dying process so I'll kill myself’ |
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‘It'll be extremely terrible. It'll be coming up from there, just everywhere. I mean the complications and that would give me so much pain and suffering. I anticipate the future would be like this. Very severe, very scary when I think about it’ |
Anticipation of a future worse than death itself. | |
– Fear of imminent death | ‘Not much hope, nor would there be any miracles…You doctors can't help when the patients deteriorate and then drop dead…’ |
Reality of disease progression. |
‘This sort of disease ultimately leads to death. I have to walk that path’ |
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‘I haven't been in hospital before. I wouldn't know the facts. I haven't been ill before’ |
Anticipation of a future worse than death itself. | |
‘…the end of many dreams for, plans, complete halt to things I was doing, want to do. The biggest thing is the weakness, which I absolutely hate, not being able to do things, to realise that this is virtually the end of it all. There's no future really. You can't plan anything’ |
Impact on the patient. | |
‘Not much hope, nor would there be any miracles…You doctors can't help when the patients deteriorate and then drop dead…’ |
Reality of disease progression. | |
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‘The goal is now to die. …I'm using my flexibility not to devote my time toward how I am going to die and praying, etc… I'm using my flexibility in time management to do things that the living do, not the dying’ |
A manifestation of the will to live. | |
‘Wish to live but can't live; wish to die but can't die’ |
Perception of suffering for self. | |
‘See, there's a problem while planning or pursuing your death… On the one hand, I am saying all these things, and, on the other hand, I am going down for radiation¡ |
A manifestation of the will to live. | |
‘I've experienced such incredible pain over the last little while and more in the last week. Such incredible pain that it made me think that death is preferable to this…I'll sit there for 2 hours in terrible pain. Such pain where I can't yawn even, and I get only half a yawn and my whole insides turn and waiting for the medication to start to work… I'd love to have 48 h let's say, I'd love to have this weekend where I could plan to have a nice weekend and have no pain. I'd love to do that and it doesn't happen, and the pain affects everything. It makes you tired. It affects how you can eat. It affects your mood. It affects other people, and the fact is that even if you try to hide it, you can't… So that's hard…and I know it's gonna get worse, so that's hard too. It's great to be alive, and pain takes that life out of you, and to sit there for 2 hours with a blanket around your just shivering, with no solution, is really hard’ |
Desire to hasten death as an expression of despair. | |
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‘I can't bear the dying process so I'll short circuit it by dying’ |
The dying process itself was so difficult that an early death was preferred. | |
‘I feel, deep inside, I don't want to feel hurting… that I want to end this… I ask God why he don't take me, why I suffer so much’ |
The immediate situation was unendurable and required instant action. | |
‘In a sense it's artificial that I'm still alive. Even a few years ago that would not have been the case for me to survive that long, but there are limits to what any organism will take or can do, and I have reached my limit’ |
Desire to hasten death as a manifestation of letting go. | |
‘Pain is my biggest fear. It puts me in a darkness and a lack of will to go forward and a desire to die… The pain wants me to have vehicle to just, just stop my life’ |
A hastened death was an option to extract oneself from an unendurable situation. | |
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‘If I had to go through [an episode of acute shortness of breath] again, I would throw myself in front of a subway train. I am not going through that again’ |
A manifestation of the last control the dying person can exert. | |
‘If the pain gets worse, then I want to be dead’ |
A hastened death was an option to extract oneself from an unendurable situation. | |
‘I just feel sometimes as though cancer is, uh, an opponent. And, it seems to me, it says to itself, ‘I am in control of this body. This is mine, I will do whatever I want to with it’” |
Sense of control; ultimate control through physician-assisted death. |
The reciprocal translations were then brought together by synthesizing them, starting from the identified themes and matching them with their respective quotations. This process involved further re-readings of the original studies, with the final themes obtained being once again compared at the end of the reciprocal translation process. This gave rise to what Noblit and Hare
The main features of the seven studies included in this synthesis are summarized in
Source paper | Country setting | Participants | Research Design | Data collection | Setting | Sampling | Data collection |
Lavery |
Ontario, Canada | 31 men and 1 woman with HIV or AIDS | Grounded Theory | In depth interviews | HIV Ontario Observational Database (HOOD), which is a provincial epidemiological database. | Purposive sampling. | October 1996 to september 1997 |
Kelly |
Brisbane, Australia | 30 terminally ill cancer patients, who endorsed some wish to hasten death | Mixed-Methods Study. Qualitative method: Descriptive qualitative study | Quantitative scale and Semi-structured interviews | Inpatient hospice unit and home palliative care service | Purposive sampling | Between 1998 and 2000 |
Coyle & Sculco 2004 |
New York, USA | 7 terminally ill cancer patients that expressed to desire to hasten death | Phenomenology | In depth interviews | Pain and palliative care unit in an urban center cancer research | Purposive sampling | 1–6 interviews to each patient in 6 months |
Mak & Elwyn 2005 |
Hong Kong, China | 6 patients that requested to hasten death | Hermeneutic Phenomenology | In depth interviews | Palliative care unit consisted of a 26-bedded hospice in China. This unit followed the UK model of palliative care with a multi-disciplinary team | Purposive sampling: theoretical | 4 months period in 2000 |
Pearlman |
Seattle, USA | 35 patients who seriously pursued a hastened death | Descriptive qualitative study | Semi-structured interviews | Patient advocacy organizations that counsel persons interested in PAS, hospices and grief counselors | Purposive sampling | April 1997 to march 2001 |
Schroepfer 2006 |
Wisconsin, USA | 18 terminally ill elders (50 or more years old) who desire to hasten death | Content analysis; inductive method in locating themes and patterns | Face-to-face interviews | 2 palliative care programs, 2 hospital outpatient clinics and 6 hospices | Purposive sample | Not specify |
Nissim |
Toronto, Canada | 27 ambulatory patients with advanced lung or gastrointestinal cancer | Grounded Theory | Semi-structured interviews and discovery- oriented | Outpatient clinics at a large cancer center in Toronto | Theoretical Sampling | March 2003 to November 2006 |
Six major themes emerged when synthesizing the translations: the WTHD in response to physical/psychological/spiritual suffering, loss of self, fear, the WTHD as a desire to live but ‘not in this way’, the WTHD as a way of ending suffering, and the WTHD as a kind of control over life, ‘to have an ace up one's sleeve just in case’. Overall, the WTHD emerges as a phenomenon that does not necessarily imply the wish to die, and it appears as a response to an overwhelming emotional distress among patients in the advanced stages of disease.
Themes/– Categories | Study Reference | ||||||
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Yes | Yes | Yes | Yes | Yes | Yes | Yes |
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– Loss of Function | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
– Loss of Control | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
– Sense of “Loss of dignity” | -- | Yes | Yes | Yes | Yes | Yes | -- |
– Loss of Meaning | Yes | Yes | -- | -- | Yes | Yes | Yes |
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– Fear to dying process | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
– Fear to imminent death | Yes | Yes | -- | Yes | -- | -- | Yes |
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-- | Yes | Yes | Yes | Yes | Yes | Yes |
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Yes | Yes | Yes | Yes | Yes | Yes | Yes |
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-- | Yes | Yes | -- | Yes | Yes | Yes |
In all the selected studies the WTHD is explained as a complex phenomenon, of multi-factor aetiology, that is almost always triggered by the exacerbation of physical and/or psychological symptoms, leading to a situation of emotional distress and hopelessness. All the patients featured in the seven studies presented physical, psychological and spiritual suffering, and the WTHD emerged as a response to this.
The theme
The loss of body function was a common denominator among all participants and contexts (HIV patients, cancer patients, palliative care in-patients and elderly patients). As the disease evolves it brings physical deterioration, weakness and various physical symptoms, and this is accompanied by a progressive loss of body function, whether in terms of an inability to go to the toilet, urinary or faecal incontinence, or difficulties eating or even breathing. The deterioration in body function was described by all the participants in the various studies as a negative experience, mainly in terms of the physical dependency that it implied. This dependency in relation to the simplest of tasks appears to be related to hopelessness and emotional distress. The perception of loss was intrinsically linked to the physical changes that were produced in all the participants of the seven studies. Incontinence and/or being dependent on others for help in using the toilet was described as an especially significant event that preceded or accompanied the WTHD.
The loss of body function leads, in turn, to a loss of the different roles that the person had acquired in life (professional, social, family, etc.), these being replaced by the new role of ‘dependent individual’. Indeed, functional deterioration and dependency restrict not only the person's professional capacities but also the possibility of maintaining his/her social relationships or role within the family; for example, a person may cease to be the mother or father who looked after the family and become a patient who needs to be cared for.
Alongside the loss of body function that occurs as the disease progresses there is also a loss of control. In the studies reviewed this loss of control was interpreted in two ways. On the one hand there is loss of control over the body, which is linked to a decline in various physical functions (difficulty getting up unaided, with walking or eating, with sphincter control, etc.). However, this is accompanied by another, more internal loss of control, namely the control over one's own life and future. The loss of autonomy caused by dependency invariably leads the individual to feel that he/she is a burden to the family or caregivers, and prior to or alongside the emergence of this feeling the majority of patients say they feel useless. This sense of uselessness and of being a burden was occasionally expressed in terms of a ‘sense of loss of dignity’
The study by Lavery
The theme
Upon becoming aware of their prognosis the participants came to regard their own physical deterioration as being worse than death itself, this leading to a
The theme
Among participants in the studies included, the WTHD also emerged as a way out, and in some cases
In the study by Schroepfer
In five of the studies reviewed
Rather than manifesting as a genuine wish to die the WTHD appears more as a desire to live but not in this way. With only two exceptions all the participants in the studies included showed through their behaviour a desire to live. For example, they agreed to continue with medical treatment until the end of their life, and many of them said they wanted to be treated as
The apparent paradox between the desire to live and the WTHD is highlighted by Coyle and Sculco
The WTHD also emerges a cry for help in the face of suffering. The participants were aware of the precarious and extreme nature of their situation, which was experienced as unbearable and as something that required immediate action
Most participants considered the possibility of their own death as a kind of control over their life
The desire for control was also expressed as a kind of safety net, or what Coyle and Sculco
A slightly different aspect of this longing for control is when the WTHD appears as a way of manipulating the patient's surroundings. In this regard, Coyle and Sculco
The explanatory model derived from these results showed the WTHD to be a reactive phenomenon, a response to multidimensional suffering, rather than simply being one aspect of the despair that may accompany this suffering. According to this model the factors that lead to the emergence of a wish to hasten death are total suffering, loss of self, and fear, which together produce an overwhelming emotional distress in relation to which the WTHD is seen as a way out, i.e. the individual wishes to cease living in this way and to put an end to suffering while maintaining some control over the situation. As such, the model suggests a new meaning for the WTHD and highlights the factors related to — or which are the cause of — this wish. Although this conceptual model was developed on the basis of reports by hospice patients, those with cancer or HIV and elderly patients the fact that it was obtained by re-interpreting meanings across a number of different qualitative studies means that it may also be applicable to the experiences of other people living with chronic illness. The findings of the whole synthesis are summarized in
This synthesis suggests that the wish to hasten death (WTHD) is a multifactorial construct with multiple meanings that do not necessarily imply a genuine desire to hasten one's death or actually taking steps towards this. Rather, it is a phenomenon that appears, among patients in the advanced stages of illness, as a response to the extreme suffering that affects all aspects of their human existence.
The first stage of the analysis,
Of the six main emergent themes, the first, i.e. the WTHD in response to physical/psychological/spiritual suffering, defines the WTHD as a response to this kind of suffering. The second theme, loss of self, is related to the gradual loss of physical, psychological and spiritual capabilities which the patient experiences. Alongside the third theme, i.e. fear of the dying process, this loss of self can generate a sense of hopelessness and emotional distress. Another of the defining characteristics of the loss of self in the present synthesis was a perceived ‘loss of dignity’, associated with the loss of autonomy and control. The same term was also used by Chochinov
The meaning of life, another element of the theme ‘loss of self’, has recently attracted considerable interest among clinicians and researchers in the field of palliative care, and has become a key element of certain psychotherapeutic interventions
The fourth theme identified in this synthesis, i.e. the WTHD as a way of ending suffering, emerges when the patient feels that almost everything has been lost, and that all that remains is suffering. Faced with such a situation, death appears to be the only way out for these patients.
The fifth theme, the WTHD as a desire to live but not in this way, expresses a veritable paradox, a sort of cry for help, since at the same time as expressing their wish to die these patients are seeking help and companionship. This is consistent with the findings of Dierckx de Casterlé
The final theme, the WTHD as a kind of control over one's life, emerged in all the patients studied and implied, at times, a degree of planning one's own death; however, this was rarely transformed into action, and was more akin to ‘having an ace up one's sleeve just in case’. The desire for control, expressed here as the WTHD, would manifest the need to retain a degree of autonomy and capacity for decision making. However, although this control has been regarded as an active or purposeful element it would, in this case, refer more to a control over death, not over life. Other studies have also noted the importance of control in similar contexts, including cancer patients, those with neurodegenerative disease
There was one concept which emerged during the synthesis that was described only in the study by Nissim
The present synthesis also yielded an explanatory model of the WTHD. Although there are certain differences, other authors have previously described similar models (or syndromes) in an attempt to explain the hopelessness and distress felt by patients nearing the end of their life. For example, Dame Cicely Saunders
These syndromes, i.e.
Given the known correlation between depression and the WTHD
As regards our search strategy, the fact that the MeSH term ‘Qualitative Research’ was only introduced in 2003 could have limited the exhaustiveness of the search. However, the search strategies used were highly sensitive, including hand searches of reference lists, and we therefore believe that the review has covered all the relevant literature. Another possible limitation of the study is methodological in nature and relates to the fact that the studies included make use of different qualitative designs. In this review, however, the focus was on the substantive area addressed by each study. At all events, various authors
Further research is needed to determine the extent to which the present findings, which refer to the experience of the WTHD in terminally ill cancer patients, elderly patients, and AIDS and palliative care in-patients who were receiving care in a large urban cancer or AIDS centre, could be generalizable to other chronically ill individuals. It must also be acknowledged in this regard that all the studies included were conducted in developed — and mostly Western — countries, and even the study by Mak and Elwyn
The results highlight the importance of analysing the meaning which patients in the advanced stages of an illness attribute to their suffering and its consequences, which render them highly vulnerable. Any manifestation of the WTHD should be carefully assessed, with the possible reasons for it being considered in relation to the six themes described here. The results also suggest the need to develop comprehensive care plans that facilitate communication and enable carers to explore the possibility of an as yet unexpressed WTHD in these patients.
Further research on this topic could focus on new patient groups that have yet to be examined in the extant literature, for example, individuals with kidney failure, chronic respiratory disease, cardiac failure or neurodegenerative disease, as well as domiciliary and/or out-patients, the aim being to gather information that will improve the care offered to those approaching the end of life. Another potential population to study would be people living in rural areas, where resources and both cultural and contextual factors differ from those of urban areas.
Research is also needed to identify how health professionals interpret and respond to the WTHD in their patients, and the impact it may have on their attitudes and behaviour. Finally, although one of the inclusion criteria here was that the primary study had to focus on the perspective of the patient expressing the WTHD, it would be interesting to explore the meaning attributed to the WTHD by relatives and/or carers, as this complementary knowledge could help in the design of care plans.
Although the development of a theoretical proposal was not the aim of this study the results of the synthesis do provide an explanatory model of the WTHD that is common to people from different countries and healthcare systems. Indeed, patients who express the WTHD show commonalities in how they experience their illness. Moreover, the synthesis has identified the elements that seem to be required in order to understand the needs of these patients, and to develop individualized care plans for them.