Uncertain trajectories in old age and implications for families and for palliative and end of life care policy and practice

Almack, Kathryn

doi:10.1080/07481187.2019.1671539

Cited by 4 publications

(1 citation statement)

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“…The upshot of the death positive movement is that dying well is presented as achievable and even an entitlement, and the ‘bad death’ is seen as avoidable, provided individuals are prepared to talk and plan (Co-op Funeral Care, 2018 ; Macmillan Cancer Support, 2017 ; Royal London, 2021 ). However, this ideological position lacks acknowledgement or engagement with the negative or difficult existential aspects of dying, of suffering, uncertainty, grief and loss, and the mental and physical impacts of long, drawn out, dying (Almack, 2019 ; Aoun et al, 2021 ; Vig & Pearlman, 2004 ; Wilson et al, 2021 ).…”

Section: Introductionmentioning

confidence: 99%

Talking about death and dying: Findings from deliberative discussion groups with members of the public

et al. 2022

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Talking about death and dying is promoted in UK health policy and practice, from a perception that to do so encourages people to plan for their end of life and so increase their likelihood of experiencing a good death. This encouragement occurs alongside a belief that members of the public are reluctant to talk about death, although surveys suggest this is not the case. This paper describes findings from a research study in which people participated in deliberative discussion groups during which they talked about a range of topics related to death, including talking about death, the good death, choice and planning and compassionate communities. Here we report what they had to say in relation to talking about death and dying. We identified three themes: 1. The difference between talking about death as an abstract concept and confronting the certainty of death, 2. how death and dying presents issues for planning and responsibility, and 3. approaches to normalising death within society. For our participants, planning was considered most appropriate in relation to wills and funerals, while dying was considered too unpredictable to be easy to plan for; they had complex ideas about the value of talking about death and dying. KEYWORDSDeliberative discussion groups; denial of death; normalising death talk; planning for death; talking about death and dying CONTACT

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Section: Introductionmentioning

confidence: 99%

Talking about death and dying: Findings from deliberative discussion groups with members of the public

et al. 2022

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Continuing and Emerging Bonds: Working Through Grief as a Daughter and an Academic

Almack

2021

Narratives of Parental Death, Dying and Bereavement

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Hospice care access inequalities: a systematic review and narrative synthesis

Tobin

Rogers

Winterburn

et al. 2021

BMJ Support Palliat Care

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BackgroundInequalities in access to hospice care is a source of considerable concern; white, middle-class, middle-aged patients with cancer have traditionally been over-represented in hospice populations.ObjectiveTo identify from the literature the demographic characteristics of those who access hospice care more often, focusing on: diagnosis, age, gender, marital status, ethnicity, geography and socioeconomic status.DesignSystematic literature review and narrative synthesis.MethodSearches of Medline, PsycINFO, CINAHL, Web of Science, Assia and Embase databases from January 1987 to end September 2019 were conducted. Inclusion criteria were peer-reviewed studies of adult patients in the UK, Australia, New Zealand and Canada, receiving inpatient, day, outpatient and community hospice care. Of the 45 937 titles retrieved, 130 met the inclusion criteria. Narrative synthesis of extracted data was conducted.ResultsAn extensive literature search demonstrates persistent inequalities in hospice care provision: patients without cancer, the oldest old, ethnic minorities and those living in rural or deprived areas are under-represented in hospice populations. The effect of gender and marital status is inconsistent. There is a limited literature concerning hospice service access for the LGBTQ+ community, homeless people and those living with HIV/AIDS, diabetes and cystic fibrosis.ConclusionBarriers of prognostic uncertainty, institutional cultures, particular needs of certain groups and lack of public awareness of hospice services remain substantial challenges to the hospice movement in ensuring equitable access for all.

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Uncertain trajectories in old age and implications for families and for palliative and end of life care policy and practice

Cited by 4 publications

References 34 publications

Talking about death and dying: Findings from deliberative discussion groups with members of the public

Talking about death and dying: Findings from deliberative discussion groups with members of the public

Continuing and Emerging Bonds: Working Through Grief as a Daughter and an Academic

Hospice care access inequalities: a systematic review and narrative synthesis

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