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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.
Background: The IPA Taskforce on Mental Health Issues in Long-Term Care Homes seeks to improve mental health care in long-term care (LTC) homes. The aim of this paper is to provide recommendations on comprehensive assessment of depression and behavioral problems in order to further stimulate countries and professionals to enhance their quality of care.
Methods: Existing guidelines on comprehensive assessment of depression or behavioral problems in nursing home (NH) patients or patients residing in LTC homes were collected and a literature review was carried out to search for recent evidence.
Results: Five guidelines from several countries all over the world and two additional papers were included in this paper as a starting point for the recommendations. Comprehensive assessment of depression in LTC homes consists of a two-step screening procedure: an investigation to identify factors that influence the symptoms, followed by a formal diagnosis of depression according to DSM-IV-TR or the Provisional Diagnostic Criteria for Depression in Alzheimer Disease in cases of dementia. Comprehensive assessment of behavioral problems encompasses three steps: description and clarification of the behavior, additional investigation, and assessment of probable causes of the behavior. The procedure starts in the case of moderate behavioral problems.
Conclusion: The recommendations given in this paper provide a useful guide to professional workers in the LTC sector, but clinical judgment and the consideration of the unique aspects of individual residents and their situations is necessary for an optimal assessment of depression and behavioral problems. The recommendations should not be rigidly applied and implementation will differ from country to country.
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