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

Peisah, Carmelle; Sampson, Elizabeth L; Rabheru, Kiran; Wand, Anne; Lapid, Maria I.

doi:10.1016/j.jagp.2021.05.015

Cited by 10 publications

(10 citation statements)

References 53 publications

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“…This is despite the often unmet and growing palliative care needs of older people with frailty, cognitive impairment and/or multimorbidity 18▪ . The EOL care needs of older people with mental health issues and intellectual disabilities also go unmet 19 . A ‘good death’ for this group of people, argue Peisah et al .…”

Section: Resultsmentioning

confidence: 99%

“…A ‘good death’ for this group of people, argue Peisah et al . 19 , is an issue of human rights. Further, not only are conventional notions of the ‘good death’ deeply embedded in privilege 20 , but lifelong health inequities are intensified at the EOL – Corpora’s work, underpinned by intersectionality, shows how generational and structural racial disparities and disadvantage compound, leading to inequitable dying experiences 21▪▪ .…”

Section: Resultsmentioning

confidence: 99%

“…Choices around dying have an unclear relationship to the ‘good death’ for people with diminished autonomy 20 . People who are cognitively impaired or have a disability are often assumed to be unwilling or unable to talk about their EOL wishes even when supported to do so 19 . Moreover, other people who are less autonomous, including those experiencing poverty and/or deprivation, have a lower chance of a ‘good death’ 20 .…”

Section: Resultsmentioning

confidence: 99%

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Matters of care and the good death – rhetoric or reality?

Collier

Chapman

2023

Current Opinion in Supportive &Amp; Palliative Care

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Purpose of review The notion of a ‘good death’ is central to hospice and palliative care philosophy. This review interrogates social imaginaries of the ‘good death’ in the context of current global, health and sociopolitical challenges. Recent findings Research literature and policy documents across fields continue to place emphasis on the ‘good death’. As part of the equity turn in palliative care, there is a growing body of work highlighting the diverse perspectives of people whose voices were heretofore not understood. Inequities are evident not only in terms of who has access to a ‘good death’ but also related to the effects of the dominant ‘good death’ script itself. Summary There is increasing evidence that pursuit of the ‘good death’ narrative may be counter to supporting people as they are living and dying. The authors instead argue for a research, policy and practice shift to ‘matters of care’.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Matters of care and the good death – rhetoric or reality?

Collier

Chapman

2023

Current Opinion in Supportive &Amp; Palliative Care

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“…Psychiatric services should integrate palliative care into programs when caring for patients with serious mental illness, especially during this time when the ongoing pandemic and climate change poses significant threats to the well-being of older people. This will ensure that the right to dignity, autonomy, and self-determination will be respected and individualized care will be provided in keeping with the values of even the most vulnerable person ( 36 – 40 ).…”

Section: Discussionmentioning

confidence: 99%

Ageism, human rights and ethical aspects of end-of-life care for older people with serious mental illness

Kotzé

Roos

2022

Front. Psychiatry

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There are many complex concepts to consider during end-of-life discussions and advance care planning, especially when vulnerable populations such as older individuals with serious mental illness are involved. This article aims to summarize some of these important concepts, such as the effects of ageism, preservation of human rights and dignity, supported or shared decision making and palliative approaches. It emerged from a study that found two thirds of 100 participants 60 years of age and older with serious mental illness had end-of-life decision-making capacity. This finding highlighted the individual and contextual nature of decision-making capacity, the importance of consideration of individual values and protection of human dignity during end-of-life care. Healthcare providers have a duty to initiate end-of-life and advance care discussions, to optimize decision-making capacity, and to protect autonomous decision-making. Chronological age or diagnostic categories should never be used as reasons for discrimination and all patients should receive end-of-life care in keeping with their preferences and values.

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“…To this end, a user-friendly brief video was developed to enhance early initiations of such discussions and address fears regarding referral to palliative care [26]. Clearly, consumer and carer partnerships are integral to quality dying [27].…”

Section: Discussionmentioning

confidence: 99%

Human Rights and Empowerment in Aged Care: Restraint, Consent and Dying with Dignity

Jessop

Peisah

2021

IJERPH

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The aged care system in Australia is in crisis and people living with dementia are especially vulnerable to breaches of human rights to autonomy, dignity, respect, and equitable access to the highest quality of health care including meeting needs on account of disability. To be powerful advocates for themselves and others, people with dementia and the wider community with vested interests in quality aged care must be informed about their rights and what should be expected from the system. Prior to the Australian Royal Commission into Aged Care Quality and Safety, the Empowered Project was established to empower and raise awareness amongst people with dementia and their families about changed behaviours, chemical restraint, consent, end of life care, and security of tenure. A primary care-embedded health media campaign and national seminar tour were undertaken to meet the project aims of awareness-raising and empowerment, based on 10 Essential Facts about changed behaviours and rights for people with dementia, established as part of the project. Knowledge translation was assessed to examine the need and potential benefit of such seminars. We demonstrated that this brief educational engagement improved community knowledge of these issues and provided attendees with the information and confidence to question the nature and quality of care provision. With the completion of the Royal Commission and corresponding recommendations with government, we believe the community is ready to be an active player in reframing Australia’s aged care system with a human rights approach.

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

Cited by 10 publications

References 53 publications

Matters of care and the good death – rhetoric or reality?

Matters of care and the good death – rhetoric or reality?

Ageism, human rights and ethical aspects of end-of-life care for older people with serious mental illness

Human Rights and Empowerment in Aged Care: Restraint, Consent and Dying with Dignity

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