Planning End-of-Life Care for Patients with Dementia: Roles of Families and Health Professionals

Abstract

We examined families' end-of-life decision making and their interactions with health professionals. Twenty-eight family members of institutionalized dementia patients participated in four focus groups. We found that participating family members were not well prepared for their decision-making roles, and that they: 1) experienced substantial burdens and loss in caring for institutionalized elders; 2) had limited understanding of the natural progression of dementing conditions; 3) were uncomfortable in setting goals for their relatives' end-of-life care; 4) had little experience with death, and were ambivalent about the anticipated death of their relative; and (5) reported that they had little substantive communication with health professionals regarding end-of-life care planning. We concluded that many of the needs of such families could be addressed through improved application of the principles of advance care planning, including regular structured discussions, involvement of surrogate decision-makers, and anticipation of clinical decisions. Health professionals should take the lead in ‘normalizing’ the discussion of death.

Dying with Dementia: What We Know after More than a Decade of Research

“…Family experiences have been described in a variety of qualitative studies (i.e., [78][79][80][81][82][83][84][85]). The results of selected studies have been integrated in a recent review, showing considerable unmet needs in families [85].…”

“…Families need guidance and support in transitioning from the curative mindset to a comfort care approach, and in dealing with emotions such as guilt [78,84,85]. This guidance is best provided in a relationship built on trust and familiarity.…”

Approaching the end of life and dying with dementia in care homes: the accounts of family carers

“…[51][52][53] Family carers tended not to regard dementia as a terminal illness, 52 and the process of dying was not recognized. 49,52,54,55 Forbes et al used the analogy of 'travelling on a journey' and caring for the person with dementia being likened to a 'rocky road' ( 55 ; p. 256). The horizon on the journey tended to be limited, with family care-givers focusing on small, day-to-day changes in the person's condition, rather than seeing the 'bigger picture' and the general decline, indicating that their relative would die.…”

“…53 They felt uncomfortable making decisions that might be seen to hasten death. 54 Family care-givers used a range of values to underpin the decision-making process, including quality of life, 51,55 honouring previously expressed wishes, 51,52 the personal history of the person with dementia, 51 the preservation of dignity and the provision of comfort. 2,49,55 Religious faith was also used as a guiding force for some, 52,57 being used to make and confirm a wide range of decisions including the withholding, continuance or withdrawal of treatment.…”

Een handreiking voor familieleden over palliatieve zorg bij dementie: evaluatie door zorgverleners en familieleden

“…Echter: familieleden kennen vaak het natuurlijke beloop van dementie niet, noch weten zij van complicaties en behandel(on)mogelijkheden in de laatste levensfase. [2][3][4] Schriftelijke informatie over het ziektebeloop kan artsen en familieleden een zinvolle ondersteuning bieden bij dit besluitvormingsproces. Brits onderzoek onder familieleden van thuiswonende patiënten met dementie liet zien, dat ondersteuning in de vorm van schriftelijke informatie een welkome aanvulling is op het gesprek met de zorgverlener.…”