Dementia Caregiver Grief and Bereavement

Alzheimer’s disease and related dementias make up the fifth leading cause of death for individuals of 65 years of age and older in the United States. Seventy percent of these individuals will die in long-term care settings | Western Journal of Nursing Research

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The aim of this integrative review was to examine and synthesize the evidence on grief and bereavement in Alzheimer’s disease and related dementias caregivers. This review identified five critical gaps in the existing evidence:

(a) a lack of ethnic and gender diversity among caregivers studied,

(b) limited use of valid instruments to study dementia caregiver grief and bereavement,

(c) no substantive research examining dementia caregiver grief and bereavement for caregivers whose family members die in long-term care,

(d) a lack of evidence examining the effect of hospice services on dementia caregiver grief and bereavement

(e) a lack of grief and bereavement interventions for dementia caregivers whose family members die in long-term care.

Full reference: Arruda, E.H. et al. (2017) Dementia Caregiver Grief and Bereavement: An Integrative Review. Western Journal of Nursing Research. Vol.  39 (no. 6) pp. 825-851

End of life strategy probably improved choice of where to die for people with severe respiratory disease

Most people prefer not to die in hospital, but the majority of patients with long-term diseases other than cancer end up dying there | NIHR Signal

In England, an NIHR study based on routine collected national data showed that roll-out of the End of Life Care strategy in 2004 was linked to a reduction in deaths in hospital. The number of deaths here fell by 6% for people with chronic obstructive pulmonary disease (COPD), and 3% for people with interstitial lung diseases. However, hospital deaths did not fall for respiratory patients with other conditions, like heart failure.

The strategy aimed to allow people to die where they chose. It prioritised home care over hospital care, and addressing the needs and preferences of patients and carers.

The fall in the number of hospital deaths is probably the result of the strategy. The results are similar to those observed in cancer care, and the reduction in hospital deaths clearly emerged after the strategy was introduced, and increased after an intensified roll-out in 2008.

To improve impact, early and integrated palliative care approaches are needed, targeting those at highest risk. Particular focus should be on patients with comorbidities and people living in more deprived areas, where place of death has remained unchanged.

How are non-numerical prognostic statements interpreted and are they subject to positive bias?

Frank, clear communication with family members of terminally ill or incapacitated patients has important implications for well-being, satisfaction with care and sound decision-making | BMJ Supportive & Palliative Care

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Objectives: Numerical prognostic statements, particularly more negative ones, have been found to be interpreted in a positively biased manner. Less precise non-numerical statements, preferred by physicians, and particularly statements using threatening terms (dying vs surviving) may be even more subject to such biases.

Methods: Participants (N=200) read non-numerical prognostic statements framed in terms of dying or surviving and indicated their interpretation of likelihood of survival.

Results: Even the most extreme statements were not interpreted to indicate 100% likelihood of surviving or dying, (eg, they will definitely survive, 92.77%). The poorness of prognoses was associated with more optimistically biased interpretations but this was not, however, affected by the wording of the prognoses in terms of dying versus surviving.

Conclusions: The findings illuminate the ways in which commonly used non-numeric language may be understood in numeric terms during prognostic discussions and provide further evidence of recipients’ propensity for positive bias.

Full reference: Moyer, A. et al. (2017) How are non-numerical prognostic statements interpreted and are they subject to positive bias? 

Nurses’ experiences of pain management for people with advanced dementia approaching the end of life

Pain management in end-stage dementia is a fundamental aspect of end-of-life care; however, it is unclear what challenges and facilitators nurses experience in practice, whether these differ across care settings, and whether training needs to be tailored to the context of care | Journal of Clinical Nursing

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Aims and objectives: To explore hospice, acute care and nursing home nurses’ experiences of pain management for people with advanced dementia in the final month of life. To identify the challenges, facilitators and practice areas requiring further support.

Conclusions: Achieving pain management in practice was highly challenging. A number of barriers were identified; however, the manner and extent to which these impacted on nurses differed across hospice, nursing home and acute care settings. Needs-based training to support and promote practice development in pain management in end-stage dementia is required.

Relevance to clinical practice: Nurses considered pain management fundamental to end-of-life care provision; however, nurses working in acute care and nursing home settings may be undersupported and under-resourced to adequately manage pain in people dying with advanced dementia. Nurse-to-nurse mentoring and ongoing needs-assessed interactive case-based learning could help promote practice development in this area. Nurses require continuing professional development in pharmacology.

Full reference: De Witt Jansen, B. et al. Nurses’ experiences of pain management for people with advanced dementia approaching the end of life: a qualitative study. Journal of Clinical Nursing. 26,(9-10) pp. 1234–1244

Critical Care Nurses Suggestions to Improve End-of-Life Care Obstacles

Critical-care nurses (CCNs) provide end-of-life (EOL) care on a daily basis as 1 in 5 patients dies while in intensive care units. Critical-care nurses overcome many obstacles to perform quality EOL care for dying patients | Dimensions of Critical Care Nursing

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Objectives: The purposes of this study were to collect CCNs’ current suggestions for improving EOL care and determine if EOL care obstacles have changed by comparing results to data gathered in 1998.

Methods: A 72-item questionnaire regarding EOL care perceptions was mailed to a national, geographically dispersed, random sample of 2000 members of the American Association of Critical-Care Nurses. One of 3 qualitative questions asked CCNs for suggestions to improve EOL care. Comparative obstacle size (quantitative) data were previously published.

Results: Of the 509 returned questionnaires, 322 (63.3%) had 385 written suggestions for improving EOL care. Major themes identified were ensuring characteristics of a good death, improving physician communication with patients and families, adjusting nurse-to-patient ratios to 1:1, recognizing and avoiding futile care, increasing EOL education, physicians who are present and “on the same page,” not allowing families to override patients’ wishes, and the need for more support staff. When compared with data gathered 17 years previously, major themes remained the same but in a few cases changed in order and possible causation.

Conclusion: Critical-care nurses’ suggestions were similar to those recommendations from 17 years ago. Although the order of importance changed minimally, the number of similar themes indicated that obstacles to providing EOL care to dying intensive care unit patients continue to exist over time.

Full reference: Beckstrand, R.L. et al. (2017) Critical Care Nurses Suggestions to Improve End-of-Life Care Obstacles: Minimal Change Over 17 Years. Dimensions of Critical Care Nursing. 36(4) pp. 264–270