The Quality of Dying and Death in a Residential Hospice

Weerakkody, Isuri; Hales, Sarah; Fernandes, Samantha; Emmerson, Debbie; OʼNeill, William M.; Zimmermann, Camilla; Rodin, Gary

doi:10.1016/j.jpainsymman.2018.07.004

Cited by 14 publications

(21 citation statements)

References 18 publications

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“…Physicians with higher death anxiety were found not only to have trouble disclosing terminal prognoses, they were also more likely to treat conservatively and prolonging patients' lives . Oncologists' willingness to accept death as a fact of life might lead to a more reflected use of aggressive treatments and to the standardized implementation of supportive palliative care strategies in the concept of tumor treatment allowing patients to spend the end of their lives outside the hospital and, thus, potentially increasing their quality of life …”

Section: Discussionmentioning

confidence: 99%

Characterizing death acceptance among patients with cancer

Philipp

Mehnert

et al. 2019

Psycho-Oncology

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Objective Death acceptance may indicate positive adaptation in cancer patients. Little is known about what characterizes patients with different levels of death acceptance or its impact on psychological distress. We aimed to broaden the understanding of death acceptance by exploring associated demographic, medical, and psychological characteristics. Methods At baseline, we studied 307 mixed cancer patients attending the University Cancer Center Hamburg and a specialized lung cancer center (age M = 59.6, 69% female, 69% advanced cancer). At 1‐year follow‐up, 153 patients participated. We assessed death acceptance using the validated Life Attitude Profile–Revised. Patients further completed the Memorial Symptom Assessment Scale, the Demoralization Scale, the Patient Health Questionnaire, and the Generalized Anxiety Disorder Questionnaire. Statistical analyses included multinomial and hierarchical regression analyses. Results At baseline, mean death acceptance was 4.33 (standard deviation [SD] = 1.3, range 1‐7). There was no change to follow‐up (P = 0.26). When all variables were entered simultaneously, patients who experienced high death acceptance were more likely to be older (odds ratio [OR] = 1.04; 95% confidence interval [CI], 1.01‐1.07), male (OR = 3.59; 95% CI, 1.35‐9.56), widowed (OR = 3.24; 95% CI, 1.01‐10.41), and diagnosed with stage IV (OR = 2.44; 95% CI, 1.27‐4.71). They were less likely to be diagnosed with lung cancer (OR = 0.20; 95% CI, 0.07‐0.58), and their death acceptance was lower with every month since diagnosis (OR = 0.99; 95% CI, 0.98‐0.99). High death acceptance predicted lower demoralization and anxiety at follow‐up but not depression. Conclusions High death acceptance was adaptive. It predicted lower existential distress and anxiety after 1 year. Advanced cancer did not preclude death acceptance, supporting the exploration of death‐related concerns in psychosocial interventions.

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Section: Discussionmentioning

confidence: 99%

Characterizing death acceptance among patients with cancer

Philipp

Mehnert

et al. 2019

Psycho-Oncology

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“…In our research using the QODD with patients with advanced cancer in Ontario, Canada, who had universal access to high-quality PC, most patients reported good quality of dying and death, although a substantial minority still experienced poor symptom control and concerns near the end of life. 36,37…”

Section: Introductionmentioning

confidence: 99%

Evaluation of the Quality of Dying and Death Questionnaire in Kenya

Mah

Powell²,

Malfitano

et al. 2019

JGO

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PURPOSE A culturally appropriate, patient-centered measure of the quality of dying and death is needed to advance palliative care in Africa. We therefore evaluated the Quality of Dying and Death Questionnaire (QODD) in a Kenyan hospice sample and compared item ratings with those from a Canadian advanced-cancer sample. METHODS Caregivers of deceased patients from three Kenyan hospices completed the QODD. Their QODD item ratings were compared with those from 602 caregivers of deceased patients with advanced cancer in Ontario, Canada, and were correlated with overall quality of dying and death ratings. RESULTS Compared with the Ontario sample, outcomes in the Kenyan sample (N = 127; mean age, 48.21 years; standard deviation, 13.57 years) were worse on 14 QODD concerns and on overall quality of dying and death ( P values ≤ .001) but better on five concerns, including interpersonal and religious/spiritual concerns ( P values ≤ .005). Overall quality of dying was associated with better patient experiences with Symptoms and Personal Care, interpersonal, and religious/spiritual concerns ( P values < .01). Preparation for Death, Treatment Preferences, and Moment of Death items showed the most omitted ratings. CONCLUSION The quality of dying and death in Kenya is worse than in a setting with greater PC access, except in interpersonal and religious/spiritual domains. Cultural differences in perceptions of a good death and the acceptability of death-related discussions may affect ratings on the QODD. This measure requires revision and validation for use in African settings, but evidence from such patient-centered assessment tools can advance palliative care in this region.

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“…There are surprisingly few systematic reviews of the quality of residential hospice care. Weerakkody et al [57], in a study involving 100 bereaved caregivers of people who died in a Toronto (Canada) hospice, found that quality (measured by the Quality of Dying and Death-QODD) was average to above average and that higher scores were reported by those whose relative had been admitted for more than one week. A possible explanation can be inferred from the evaluation by Lucey et al [58] of patients admitted to Milford Hospice, Limerick, Eire.…”

Section: Residential Hospicementioning

confidence: 99%

Palliative and End-of-Life Care Service Models: To What Extent Are Consumer Perspectives Considered?

Rumbold

Aoun

2021

Healthcare

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This article presents evidence found in a search of national and international literature for patient preferences concerning settings in which to receive palliative care and the appropriateness of different models of palliative care. The purpose was to inform end-of-life care policy and service development of the Western Australian Department of Health through a rapid review of the literature. It was found that consumer experience of palliative care is investigated poorly, and consumer contribution to service and policy design is limited and selective. Most patients experience a mix of settings during their illness, and evidence found by the review has more to do with qualities and values that will contribute to good end-of-life care in any location. Models of care do not make systematic use of the consumer data that are available to them, although an increasingly common theme is the need for integration of the various sources of care supporting dying people. It is equally clear that most integration models limit their attention to end-of-life care provided by health services. Transitions between settings merit further attention. We argue that models of care should take account of consumer experience not by incorporating generalised evidence but by co-creating services with local communities using a public health approach.

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The Quality of Dying and Death in a Residential Hospice

Cited by 14 publications

References 18 publications

Characterizing death acceptance among patients with cancer

Characterizing death acceptance among patients with cancer

Evaluation of the Quality of Dying and Death Questionnaire in Kenya

Palliative and End-of-Life Care Service Models: To What Extent Are Consumer Perspectives Considered?

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