Relinquishing or taking control? Community perspectives on barriers and opportunities in advance care planning

Abstract

Objective. This paper reports on the experiences and perspectives of community members in relation to advance healthcare directives and enduring power of attorney, including the factors that encourage or discourage engagement in advance care planning (ACP).Methods. A qualitative methodology was used involving 26 in-depth telephone interviews with community members (mean age 66 years). The aims of the interview question were to gain an understanding of: (1) motivations for engaging in ACP; (2) barriers that prevent people from engaging in ACP; and (3) suggestions for promoting ACP.Results. The findings suggest that: (1) community members lack knowledge about ACP; (2) forms appear inaccessible and complex; (3) community members avoid ACP due to fear, mistrust and concerns over control; and (4) there are misperceptions regarding the relevance of ACP based on age and health.Conclusions. There is unnecessary fear, avoidance and mistrust around ACP activities, largely resulting from misinformation. There is an undoubted need for greater education and support to be offered to individuals and their families regarding ACP, its benefits and its limitations.What is known about the topic? There is a lack of awareness about ACP in Australia, which is compounded by issues in the accessibility of ACP information, forms and support in completing the often complex documentation. Further, studies have indicated health practitioners tend to avoid assisting patients with ACP decision making and formalisation of their wishes for health care should they lose testamentary capacity. What does this paper add? This paper contributes further understanding of the experiences and perceptions of people, particularly older Australians, in relation to ACP, including the motivating and discouraging factors for people in the uptake of advance healthcare directives and enduring power of attorney. People felt discomfort and mistrust about ACP, and lacked understanding of its relevance regardless of age or health status. Those who had engaged in ACP, prompted by family members or experiences in, or witnessing, ill health, felt a sense of security in having formalised their wishes. What are the implications for practitioners? It is now clear that people require improved provision of information and support around ACP-related activities. This support may best be offered by practitioners such as nurses and social workers who are knowledgeable regarding ACP and skilled in counselling. Without discussion of death and dying, and the role of ACP, people will continue to feel a mistrust and avoidance towards formalising their healthcare wishes in advance.Additional keywords: advance directive, aging, community, death and dying, decision making, end-of-life issues, enduring power of attorney.

Prevalence of advance care directives in the community: a telephone survey of three Australian States

“…This interpretation may help explain similarities in prevalence rates for both studies. Confusion about terminology for ACP and ACD was noted above and this exists in the community . Examining these two studies together suggests the importance of explaining to participants the suite of ACP and ACD documents and how they differ.…”

“…This is striking when compared with community prevalence rates of financial enduring powers of attorney (30%) and wills (59%). 8 Reasons advanced for this include avoiding consideration of mortality and ill-health 1,8,[17][18][19] poor public awareness of existence and utility of ACD 8,[18][19][20] and the complexity of existing legal frameworks, including variation across Australian jurisdictions. 8,19 While policy-makers and others urge people to undertake ACP, the low uptake of ACD shows challenges in Australia remain.…”

“…Confusion about terminology for ACP and ACD was noted above and this exists in the community. 19 Examining these two studies together suggests the importance of explaining to participants the suite of ACP and ACD documents and how they differ. Limitations noted in both studies include that results depend upon participants' understanding of the questions and accurate responses.…”

Cracking open death: death conversations in primary care

“…[32][33][34][35] We support the conclusion by McLennan et al that death conversations fall within the role of health professionals, and that steps need to be taken to ensure death is not 'avoided at personal and professional levels.' 36 Increased engagement with advance care planning and end-of-life care processes that facilitate increased death conversation preparedness by GPs are currently being rolled out in New Zealand. 37 However, as the article by Cotton points out, death conversations should not be confined to the end of life.…”

Gaps in public preparedness to be a substitute decision-maker and the acceptability of high school education on resuscitation and end-of-life care: a mixed-methods study

“…7,24 Qualitative studies in Canada and Australia showed that inaccessibility and lack of knowledge lead to fear, avoidance and mistrust when it comes to advance care planning. 25,26 Although interventions to facilitate advance care planning continue, 9 preparation to care for loved ones as a substitute decision-maker should be synergistic and provide more cues to action, as per the Health Belief Model. 10 Three-quarters of our participants believed they would act as a substitute decision-maker in the future; the universality of this issue warrants consideration of population-based solutions.…”