It’s just too hard! Australian health care practitioner perspectives on barriers to advance care planning

Boddy, Jennifer; Chenoweth, Lesley Irene; McLennan, Vanette; Daly, Michelle

doi:10.1071/py11070

Cited by 46 publications

(51 citation statements)

References 32 publications

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“…Many reported helping factors are in fact ways to deal with this challenge and to find team consensus in decision-making. In line with some of the existing literature, our study shows that factors to overcome obstacles are mostly situated in communication with patients [23,[49][50][51] or in personal attitudes of professionals [52][53][54][55].…”

Section: Discussionsupporting

confidence: 62%

What do hospital professionals report as helping in overcoming obstacles for ACP decision-making? A qualitative study

Vanderhaeghen¹,

Bossuyt²,

Menten³

et al. 2017

Int Clin Med

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Background: Advance Care Planning (ACP) can be defined as an ongoing process of communication between patients and (in-) formal caregivers to help an individual identify, reflect upon, discuss, and express her or his values, beliefs, goals, and priorities to guide individual care and treatment decision making when nearing end of life. Studies suggest ACP is not well implemented in the hospital setting. This contrast sharply to the necessity of those conversations in hospitals: treatment decisions are made which potentially have a big impact on the patient's and families quality of life. AIMS: In order to facilitate the implementation of the ACP decision making process in hospital, it might be interesting to know what helps hospital professionals to overcome challenges.

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Section: Discussionsupporting

confidence: 62%

What do hospital professionals report as helping in overcoming obstacles for ACP decision-making? A qualitative study

Vanderhaeghen¹,

Bossuyt²,

Menten³

et al. 2017

Int Clin Med

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“…Such motivation to engage with ACP could be harnessed with enhanced support and guidance from healthcare practitioners to address issues of inaccessibility relating to ACP. 4 Indeed, the involvement of social workers in this way has previously been shown to increase ACP engagement. 14,15 The desire to protect family members from excessive burden was found to be a driving factor behind ACP-related activities, and this relates to previous findings regarding the impetus behind AHD completion.…”

Section: Discussionmentioning

confidence: 99%

“…1,9,10 This lack of awareness is compounded by misinformation and misconceptions regarding ACP and the perceived inaccessibility of ACP forms, particularly the AHD. 4 The complexity and length of the forms is likely to be a significant factor in preventing people from completing the formal process, particularly as support with the process is limited or difficult to access. The appointment of an EPoA for personal and health matters can be further complicated when an appropriate and trusted person is not available.…”

Section: Discussionmentioning

confidence: 99%

“…Many people in Australia are unaware of their right to appoint an EPoA for personal and health matters 1 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 information 4 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.…”

Section: Introductionmentioning

confidence: 99%

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

McLennan¹,

Boddy²,

Daly³

et al. 2015

Aust. Health Review

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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.

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“…13 In such situations, it is important for information to be immediately available, current and relevant to the patient's circumstances, otherwise the default position is frequently to treat actively in the absence of a trustworthy ACD. 13,14 Concerns have also been raised about how to maintain an up-to-date ACD, because changing personal circumstances have been shown to result in changing priorities for care. 15 Individuals may have different treatment preferences when they are healthy to those when they are ill and, as a consequence, choices about what treatment is desirable and acceptable may change over the course of their illness.…”

Section: Discussionmentioning

confidence: 99%

Palliative care health professionals’ experiences of caring for patients with advance care directives

Johnson

Singer

Masso³

et al. 2015

Aust. Health Review

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Objective. To explore the health professionals' (HPs) perceptions and experiences of advance care directives (ACDs) and advance care planning in Australian palliative care services.Methods. A nationwide survey of 105 palliative care services was conducted, with two HPs from each service invited to participate. A qualitative analysis of open responses about advance care planning was undertaken.Results. Sixty questionnaires were returned with open responses. Most responders were nurses (75%), aged 40 years (80%) and with a mean of 12 years palliative care experience. Data were grouped into four key themes: (1) the ACD; (2) the process of developing ACDs; (3) the process of using ACDs; and (4) the consequences of having ACDs. Participants were positive about advance care planning, commenting that ongoing communication about end-of-life care ensures mutual understanding between patients, family and HPs. Provision of care was considered easier and more efficient with an ACD in place. ACDs were perceived to reduce distrust and conflict between family, friends and HPs, and promote communication. Suboptimal documentation, clarity and explicitness limited the usefulness of ACDs when they were available.Conclusions. Advance care planning benefits HPs, patients and their family. To maximise these benefits, ACDs need to be clear, comprehensive, medically relevant and transportable documents.What is known about the topic? Ideally, advance care planning encompasses the identification and documentation of a person's preferences for future medical treatments and care in preparation for an occasion when the person cannot express their values and wishes. The uptake and practice of advance care planning is inconsistent, and the extent to which it is used by health professionals and patients is variable. Many people are cared for at the end of life in specialist palliative care services, but the intersection between palliative care and advance care planning remains under-researched. What does this paper adds? ACDs facilitate communication and advance care planning; help establish trust between health professionals, patients and their families; and make multiple aspects of care easier for HPs. Processes surrounding ACDs, particularly inadequate documentation, limit adherence and application. What are the implications for practitioners? Clear communication is necessary for effective ACD development and application. The presence of an ACD makes communication and advance care planning easier, and improves trust between HPs, patients and their family. To be useful, ACDs must be clear, comprehensive, medically relevant, transportable documents.

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It’s just too hard! Australian health care practitioner perspectives on barriers to advance care planning

Cited by 46 publications

References 32 publications

What do hospital professionals report as helping in overcoming obstacles for ACP decision-making? A qualitative study

What do hospital professionals report as helping in overcoming obstacles for ACP decision-making? A qualitative study

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

Palliative care health professionals’ experiences of caring for patients with advance care directives

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