‘Unbearable suffering’: a qualitative study on the perspectives of patients who request assistance in dying
Abstract
Background: One of the objectives of medicine is to relieve patients' suffering. As a consequence, it is important to understand patients' perspectives of suffering and their ability to cope. However, there is poor insight into what determines their suffering and their ability to bear it. Purpose: To explore the constituent elements of suffering of patients who explicitly request euthanasia or physician-assisted suicide (EAS) and to better understand unbearable suffering from the patients' perspective. Patients and methods: A qualitative study using in-depth face-to-face interviews was conducted with 31 patients who had requested EAS. The grounded theory approach was used to analyse the data. Results: Medical, psycho-emotional, socio-environmental and existential themes contributed to suffering. Especially fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering. Only patients with a psychiatric (co)diagnosis suffered unbearably all the time. Conclusions: Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become ‘unbearable’. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future.
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The majority of participants did not identify specific diagnostic categories as more likely to be eligible for MAiD MI-SUMC, but rather viewed the grievousness of a condition and the burden of suffering, in all its dimensions, as subjective experiences.
“The majority of participants did not identify specific diagnostic categories as more likely to be eligible for MAiD MI-SUMC, but rather viewed the grievousness of a condition and the burden of suffering, in all its dimensions [47, 53, 54], as subjective experiences.”
Participants cautioned that the MAiD MI-SUMC assessment process may exacerbate suffering, through interactions with providers who may be invalidating, assessment processes that may undermine autonomy, or through an unfavorable request outcome.
“participants cautioned that the MAiD MI-SUMC assessment process may exacerbate suffering, through interactions with providers who may be invalidating, assessment processes that may undermine autonomy, or through an unfavorable request outcome, a notion supported by prior research [47, 48].”
The Netherlands has the highest research productivity in psychiatry in the world when adjusted for GDP.
“In fact, the Netherlands has the highest research productivity in psychiatry in the world, when adjusted for GDP [14].”
From Is the exclusion of psychiatric patients from access to physician-assisted suicide discriminatory? (2019) · cites this paper as [14]
Earlier research concentrated on unbearable suffering in patients requesting euthanasia and paid less attention to the life experiences that led them to request it.
“Previous research focused on studying the key aspect of unbearable suffering in these patients who request euthanasia (Verhofstadt et al., 2017(Verhofstadt et al., , 2019a;;Dees et al., 2011), and less on the underlying life experiences that lead them to request euthanasia.”
From Why adults with psychiatric conditions request euthanasia: A qualitative interview study of life experiences, motives and preventive factors (2021) · cites this paper as Dees et al., 2011
The findings strengthen and deepen earlier research showing that patients' key issues often result from a long incremental accumulation of avoidable healthcare deficiencies that becomes a burdensome, unsolvable experiential knot without prospect of improvement.
“The results further strengthen and deepen previous research findings that the key issues for patients are often the result of a long and incremental accumulation of avoidable healthcare deficiencies that, over the years, ultimately become a burdensome and unsolvable experiential knot, without any prospect of improvement for the patients”
From Why adults with psychiatric conditions request euthanasia: A qualitative interview study of life experiences, motives and preventive factors (2021) · cites this paper as Dees et al., 2011
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- Authors
- Dees, M. K., Vernooij-Dassen, M. J., Dekkers, W. J., Vissers, K. C., & van Weel, C.
- Affiliations
- Radboud University Medical Center (NL)
- Corresponding author
- Dees, Marianne K
- Venue
- Journal of Medical Ethics
- Publisher
- BMJ
- Published
- 2011-09-24
- Volume
- 37
- Issue
- 12
- Pages
- 727-734
- ISSN
- 0306-6800 (ISSN-L)
- 1473-4257
- OpenAlex
- W2141456213
- Cited by
- 175
- References
- 27
- Citations by year
- 2026: 6 · 2025: 5 · 2024: 11 · 2023: 14 · 2022: 13 · 2021: 19 · 2020: 26 · 2019: 18 · 2018: 11 · 2017: 11 · 2016: 5 · 2015: 14 · 2014: 9 · 2013: 10 · 2012: 3
- FWCI
- 6.91
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Medical Ethics (publishedVersion)
- PubMed (publishedVersion)
- ANU Open Research (Australian National University) (submittedVersion)
- Radboud Repository (Radboud University) (submittedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- unbearable suffering, physician-assisted suicide, euthanasia, patient perspectives, coping with suffering, hopelessness, loss of autonomy, dependency, loneliness, existential suffering, end-of-life care
- MeSH terms
- Adult, Aged, Aged, 80 and over, Decision Making, Female, Humans, Male, Middle Aged, Pain, Stress, Psychological, Suicide, Assisted, Cost of Illness, Ethics, Clinical, Euthanasia, Active, Voluntary, Qualitative Research
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