Palliative Care in Advanced Dementia: Comparison of Strategies in Three Countries

Abstract

Palliative care including hospice care is appropriate for advanced dementia, but policy initiatives and implementation have lagged, while treatment may vary. We compare care for people with advanced dementia in the United States (US), the Netherlands, and Israel. We conducted a narrative literature review and expert physician consultation around a case scenario focusing on three domains in the care of people with advanced dementia: (1) place of residence, (2) access to palliative care, and (3) treatment. We found that most people with advanced dementia live in nursing homes in the US and the Netherlands, and in the community in Israel. Access to specialist palliative and hospice care is improving in the US but is limited in the Netherlands and Israel. The two data sources consistently showed that treatment varies considerably between countries with, for example, artificial nutrition and hydration differing by state in the US, strongly discouraged in the Netherlands, and widely used in Israel. We conclude that care in each country has positive elements: hospice availability in the US, the general palliative approach in the Netherlands, and home care in Israel. National Dementia Plans should include policy regarding palliative care, and public and professional awareness must be increased.

Dementia and COVID-19 in Chile, New Zealand and Germany: A Research Agenda for Cross-Country Learning for Resilience in Health Care Systems

“…The challenges of using a comparative approach and the potential for learning are well recognized [34], and examples can be found in previous trilateral health care studies: comparing access to HIV diagnosis for indigenous populations in Canada, Australia and New Zealand [120]; palliative care strategies in advanced dementia in Israel, the US and the Netherlands [121]; and the cost-effectiveness of dementia support structures in three European countries [122]. However, multi-lateral studies in the context of health care systems and dementia often remain at a largely descriptive level, with less focus on understanding the reasons for system development and the potential for learning from each other [34].…”

Practice of end-of-life care for patients with advanced dementia by hospital physicians and nurses: Comparison between medical and surgical wards

“…Nutrition and hydration, including artificial nutrition and hydration, are considered as “basic care” that cannot be withheld or withdrawn, unless the patient is in the final stage (last two weeks) of life ( Steinberg and Sprung, 2007 ). Tube feeding among patients with advanced dementia is widely used in Israel ( Clarfield et al, 2006 ; Sternberg et al, 2021 ). Palliative care is provided in both inpatient and community settings, primarily to patients with cancer.…”

“…Palliative care is provided in both inpatient and community settings, primarily to patients with cancer. Only recently, patients with advanced dementia are considered for palliative care services, with an emerging palliative care discourse in nursing homes and a pilot project of home hospice for advanced dementia ( Shaulov et al, 2019 ; Sternberg et al, 2021 ).…”

Commentary to: “Timely dying in dementia: Use patients' judgments and broaden the concept of suffering.” Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it

“…12 In the Dutch context, when deciding on treatment for persons with advanced dementia, less value is attached to advance directives than in the United States. 13 Research in The Netherlands shows that reluctance to provide euthanasia based on an advance directive is particularly high among certified elderly care physicians, a relatively large specialty caring for nursing home residents with advanced dementia. 14 The focus, usually shared with family, is on withholding burdensome life-prolonging or futile treatments including artificial feeding to allow dying from the underlying disease as soon as there is an opportunity for a peaceful, comfortable death.…”

“…Unlike physicians in the United States, Dutch physicians are inclined to advocate for quality of life in the now patient, if needed, against family wishes 12 . In the Dutch context, when deciding on treatment for persons with advanced dementia, less value is attached to advance directives than in the United States 13 . Research in The Netherlands shows that reluctance to provide euthanasia based on an advance directive is particularly high among certified elderly care physicians, a relatively large specialty caring for nursing home residents with advanced dementia 14 .…”