Academic journal article Australian Health Review

Relinquishing or Taking Control? Community Perspectives on Barriers and Opportunities in Advance Care Planning

Academic journal article Australian Health Review

Relinquishing or Taking Control? Community Perspectives on Barriers and Opportunities in Advance Care Planning

Article excerpt

Introduction

Advance care planning (ACP), which can include the appointment of an enduring power of attorney (EPoA) for personal and health matters and completion of an advance healthcare directive (AHD), comes with many challenges. Many people in Australia are unaware of their right to appoint an EPoA for personal and health matters1 or experience feelings of discomfort, sadness and resentment, among other things, when confronted with ACP when in a residential care setting.2,3 This is compounded by a perceived lack of easy-to-understand information4 and varying terminology, legislation and documentation used across Australian states and territories. For example, an EPoA for personal and health matters in Queensland is varyingly called a substitute decision maker, enduring guardian or medical agent in other jurisdictions. AHDs and EPoAs for personal and health matters are not well understood by Australian healthcare practitioners. 1,5,6 Practitioners find it difficult to discuss end-of-life decisions with patients,9,10 many experiencing a lack of confidence or knowledge.11 Some practitioners do not view ACP as part of their role1 or lack the time, skills and willingness to assist patients.1,5 Literature from the US suggests that many people cannot see the relevance of ACP to their own lives9,10 and they prefer not to think about declining health and dying.11 However, despite 'social and personal taboos about discussing the dying process' in Australia,5 many older Australians are interested in finding out more about ACP and are actively seeking information in this area (L. Crowe, V. Quinn, L. Chenoweth, S. Kularatna, J. Boddy, A. Wheeler, unpubl. data).

Although there is limited literature, particularly in Australia, focused on community member experiences and perceptions regarding ACP, recommendations have included a 'life in order' program for community members1 and training for health professionals to assist them to work effectively with patients and their families to retain appropriate control in end-of-life care.6,12,13 Involving families can be important given caregivers may override or misinterpret the healthcare consumer's wishes when there is no AHD in place. People in the US who have engaged in ACP, often with the support of a social worker,14,15 report feeling more comfortable that they have addressed concerns about living in a burdensome state16 and believe AHDs ensure them a sense of control and way of protecting their families from excessive burden.17 However, few people in south-east Queensland (and possibly Australia) have undertaken any form of ACP.18 Consequently, the present study sought to examine the views of community members about this topic.

Methods

This qualitative research is part of a broader study on ACP in Queensland, Australia. Thus, the Queensland terminology related to ACP is used herein (in particular, 'EPoA for personal and health matters' is the term used to describe substitute decision makers in Queensland). Stage 1 of this research examined practitioner perspectives on ACP, whereas Stage 2 focused on the perspectives of community members. This article presents findings from Stage 2, the community member perspectives and experiences in relation to ACP. The study was granted ethics approval from the Griffith University and Queensland Health Ethics Committees.

Data collection

In-depth telephone-based interviews were conducted with 26 community members using a snowball sampling technique. The 26 participants were recruited from community support groups and social clubs in the Gold Coast area. The interviewees consisted of 17 female and 9 male participants, with a mean age of 66 years. The interviews were between 30 and 40 min in duration, and a structured interview schedule ensured consistency across interview questions. The aims of the interview questions 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. …

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