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Unbearable suffering is a key criterion in legally granting patients' euthanasia requests in Belgium yet a generally accepted definition of unbearable suffering remains elusive. The ability to understand and assess unbearable suffering is essential, particularly in patients with psychiatric conditions, as the underlying causes of these conditions are not always apparent. To enable research into when and why suffering experiences incite patients with psychiatric conditions to request euthanasia, and to help explore preventive and curative perspectives, the development of an assessment instrument is needed.
To improve the cognitive validity of a large initial item pool used to assess the nature and extent of suffering in patients with psychiatric conditions.
Cognitive validity was established via two rounds of cognitive interviews with patients with psychiatric conditions with (n = 9) and without (n = 5) euthanasia requests.
During the first round of cognitive interviews, a variety of issues relating to content, form and language were reported and aspects that were missing were identified. During the second round, the items that had been amended were perceived as sufficiently easily to understand, sensitive to delicate nuances, comprehensive and easy to answer accurately. Neither research topic nor method were perceived as emotionally strenuous, but instead as positive, relevant, comforting and valuable.
This research resulted in an item pool that covers the concept of suffering more adequately and comprehensively. Further research endeavours should examine potential differences in suffering experiences over time and in patients with psychiatric conditions with and without euthanasia requests. The appreciation patients demonstrated regarding their ability to speak extensively and openly about their suffering and wish to die further supports the need to allow patients to speak freely and honestly during consultations.
The concept of ‘unbearable suffering’ is central to legislation governing whether euthanasia requests may be granted, but remains insufficiently understood, especially in relation to psychiatric patients.
To provide insights into the suffering experiences of psychiatric patients who have made a request for euthanasia.
Testimonials from 26 psychiatric patients who requested euthanasia were analysed using QualiCoder software.
Five domains of suffering were identified: medical, intrapersonal, interpersonal, societal and existential. Hopelessness was confirmed to be an important contributor. The lengthy process of applying for euthanasia was a cause of suffering and added to experienced hopelessness, whereas encountering physicians who took requests seriously could offer new perspectives on treatment.
The development of measurement instruments to assess the nature and extent of suffering as experienced by psychiatric patients could help both patients and physicians to better navigate the complicated and sensitive process of evaluating requests in a humane and competent way. Some correlates of suffering (such as low income) indicate the need for a broad medical, societal and political debate on how to reduce the burden of financial and socioeconomic difficulties and inequalities in order to reduce patients' desire for euthanasia. Euthanasia should never be seen (or used) as a means of resolving societal failures.
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