Perspectives of Family Members on Planning End-of-Life Care for Terminally Ill and Frail Older People

Abstract

This study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns.

Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis

“…The articles that were included in the review were published between 2008 and 2015 and carried out in Australia (1 article),17 Belgium (2 articles),19,21 Norway (2 articles),22,23 UK (2 articles),18,20 and USA (2 articles) 15,16. Seven studies used semi-structured interviews,15,18–23 which were associated with focus groups in two cases,22,23 while one study consisted only of focus groups 16.…”

“…Additionally, one study used semi-structured interviews in the context of a case study 17. Five of the included studies were performed in long-term care facilities,17,18,20,22,23 while the remaining four15,16,19,21 recruited participants from other settings as well (ie, community center, acute geriatric ward, medical oncology ward, palliative care unit, and home services for older people). In two studies,17,20 a complex ACP intervention was carried out.…”

“…In two studies,17,20 a complex ACP intervention was carried out. Of the included studies, two addressed the older people perspectives;16,19 three addressed the family members’ perspectives;15,18,21 and four addressed both perspectives 17,20,22,23. Overall, the included studies involved135 elders and 133 family members or friends.…”

“…In one study, some residents reported concerns that their documented EOL care preferences would not be followed for some reason 17. Overall, even though EOL care and ACP are regulated by law in Belgium,19 many elders and family members still lacked accurate knowledge about ACP and advance directives 19,21. In one study from the USA,15 the majority of family members of older residents with advanced stages of dementia reported that their loved ones had some form of written advance directive; while in another US study,20 only 20% of elders reported having had prior conversations about ACP, and only 15% reported having had a prior conversation with their primary care provider.…”

“…Several studies reported that family members’ attitudes toward EOL care decision-making also varied and that they were influenced by both their trust in health care providers and family dynamics 21. Most family members preferred shared decision-making with the staff,22,23 while others found it acceptable for the staff to make the decisions as long as the family members were informed 23.…”