The ‘good death’ and reduced capacity: a literature review

Abstract

Research effort into what a 'good death' entails has generally concentrated on six themes initially established by Steinhauser et al. (2000): pain and symptom management; clear decision-making; preparation for death; completion; contributing to others; and affirmation of the whole person. This review explores these themes, specifically examining their applicability to those who lack mental capacity to make their own decisions. Some of Steinhauser et al.'s themes appear more relevant than others, with clear decision-making and affirmation of personhood predicating issues related to reduced capacity. Largely, however, the literature on a 'good death' builds on an underlying assumption that the dying patient is cognisant and capable of rationalising their death. Those instances where Steinhauser et al. do acknowledge mental capacity within their model have been met by criticism from numerous authors.Factors such as the subjectivity of substitute decision-makers (Kaufman, 2000) and the complexity associated with medico-legal interpretations of current legislation (Michalowski, 2005) help to highlight deficiencies in the application of principles of a 'good death' in practice. Further specific consideration is required on how to achieve a 'good death' for those with reduced capacity.

Natural Death Versus Known Date-Of-Death: A Qualitative Study of Views on Voluntary Assisted Dying in an Online Course About Death

“…Some participants in the present study appeared influenced by having observed a ‘bad death’ (Wilson & Hewitt, 2018), or had views on what a ‘good death’ (Read & MacBride-Stewart, 2018) should look like, both highly individualised and subjective concepts usually based on experience. Some proposed VAD as a way of mitigating suffering (Beuthin et al, 2018) with palliative care proposed by some as a way of addressing pain and suffering (O'Connor et al, 2019), but others finding it to be lacking and not always accessible or adequate to meet all needs (Hayry, 2018).…”

Buen morir en la persona mayor:

“…Dentro de los artículos encontrados, predominaban las situaciones y contextos donde la persona era capaz de manifestar sus preferencias durante el fin de la vida, para alcanzar el buen morir. Esto deja de lado situaciones en las cuales la persona presenta disminución en su capacidad de manifestar su autonomía, como es el caso de aquellas con trastorno neurocognitivo mayor (49). De aquí la importancia de la elaboración de voluntades anticipadas o testamento vital, para respetar las preferencias en este tipo de contextos.…”

Accessing Medical Assistance in Death (MAiD): An interpretative phenomenological analysis of experiences with MAiD by family members and providers in Manitoba; A thesis submitted to the Faculty of Graduate Studies in partial fulfilment of the requirements for the Master of Arts degree, Department of Criminal Justice, The University of Winnipeg

“…Central to hospice/palliative care movement as well as to MAiD is the idea of a 'good death' which circles back to dignity conserving practices such as respecting and fulfilling patient wishes (Froggatt, 2007;Read & MacBride-Stewart, 2018;Zhou and Shelton, 2020). Steinhauser et al (2000) argue that what constitutes a 'good death' differs among individuals (just as preserving dignity) but generally concentrates on six areas: pain/symptom management, decision-making or control, preparedness for dying/death (the process, event, and follow up arrangements), feelings of life completion (life review, resolving conflict, time with loved ones), contribution to others or being remembered beyond death, and affirmation of the person (not reduced to a disease/patient).…”

“…While this list seems exhaustive and largely encapsulates the entire death experience, Read and MacBride-Stewart (2018) argued that this list does not take into consideration those who lack capacity to make their own medical decisions and suggested extra consideration for the interplay of substitute decision makers or proxies. Meier et al (2016) conducted a meta-analysis of research on what constitutes a 'good death' from the perspectives of patients, families, and healthcare providers.…”