Preventing unwanted situations and gaining trust: a qualitative study of older people and families’ experiences with advance care planning in the daily practice of primary care

Abstract

Background Using advance care planning (ACP) to anticipate future decisions can increase compliance with people’s end-of-life wishes, decrease inappropriate life-sustaining treatment and reduce stress, anxiety and depression. Despite this, only a minority of older people engage in ACP, partly because care professionals lack knowledge of approaches towards ACP with older people and their families. Objective To explore older people’s and their families’ experiences with ACP in primary care. Methods We conducted qualitative, semi-structured, face-to-face interviews with 22 older people (aged >70 years, v/m: 11/11), with experience in ACP, and eight of their family members (aged 40–79 years, f/m: 7/1). Transcripts were inductively analysed using a grounded theory approach. Results We distinguished three main themes. (i) Openness and trust: Respondents were more open to ACP if they wanted to prevent specific future situations and less open if they lacked trust or had negative thoughts regarding general practitioners’ (GPs’) time for and interest in ACP. Engaging in ACP appeared to increase trust. (ii) Timing and topics: ACP was not initiated too early. Quality of ACP seemed to improve if respondents’ views on their current life and future, a few specific future care scenarios and expectations and responsibilities regarding ACP were discussed. (iii) Roles of family: Quality of ACP appeared to improve if family was involved in ACP. Conclusions Quality and accessibility of ACP may improve if GPs and nurses involve family, explain GPs’ interest in ACP and discuss future situations older people may want to prevent, and views on their current life and future.

Advance care planning for frail elderly: are we missing a golden opportunity? A mixed-method systematic review and meta-analysis

“…Those studies were rated as moderate quality because the researcher’s theoretical and cultural orientations and potential influence are not mentioned in the research 31 51–53. Other studies were rated low-quality because they lacked study objectives, clearly stated data collection and analysis procedures, and participant ethical review guidelines 29 30 54 55…”

Information meetings on end-of-life care for older people by the general practitioner to stimulate advance care planning: a pre-post evaluation study

“…Future studies should explore this rise and fall of trust and the relation with ACP more deeply. Other studies indicate a complex interaction between trust and ACP [10,[13][14][15]22].…”

“…In the Netherlands, 10% of the people aged 61 years or older have a living will [9]. In a recent study [10], a lack of trust or negative previous experiences with ACP could be a reason for older people not wanting to participate in ACP conversations; however, older people who did engage in ACP felt they could trust their GP more afterwards.…”

Patient perspectives on advance euthanasia directives in Huntington’s disease. A qualitative interview study

“…Reasons for having doubts in the current study could concern the willingness of others (the physician or a relative) to cooperate in their euthanasia request. Concerning the cooperation of the physician, previous studies have shown that negative euthanasia experiences in the family cause concern when it comes to patient’s own euthanasia wishes, or cause patients to not communicate with their physician about their own wishes at all [ 10 , 17 ]. This is in line with our finding that one of the participants explained that she thought it wasn’t going to be easy to get her wish for euthanasia carried out, because that is what she experienced with a family member.…”