The Human Rights of Older People With Mental Health Conditions and Psychosocial Disability to a Good Death and Dying Well

Despite the potential importance of understanding excess mortality among people with mental disorders, no comprehensive meta-analyses have been conducted quantifying mortality across mental disorders.

Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. To define optimal palliative care in dementia. Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.

A clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Empirical evidence defining such factors, however, is lacking. To determine the factors considered important at the end of life by patients, their families, physicians, and other care providers. Cross-sectional, stratified random national survey conducted in March-August 1999. Seriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429). Importance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups. Twenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes. Although pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality. JAMA. 2000;284:2476-2482.