Experiences with advance care planning: older people and family members’ perspective

Jeong, RN Sarah Yeun-Sim; Higgins, RN Isabel; McMillan, RN Margaret

doi:10.1111/j.1748-3743.2009.00201.x

Cited by 45 publications

(78 citation statements)

References 44 publications

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“…Jeong et al 2 identified that people in residential care settings described a range of emotions when first considering ACP, including 'guilt, discomfort, denial, sad, difficult, awful, cruel, burdensome, abusive, confronting and resentful'. Although participants in the present study did not comment on these emotions, perhaps because they were living in the community with many experiencing reasonable health, they did identify a level of mistrust among people in relation to ACP processes.…”

Section: Discussionmentioning

confidence: 99%

“…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.…”

Section: Data Collectionmentioning

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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Section: Discussionmentioning

confidence: 99%

Section: Data Collectionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

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

McLennan¹,

Boddy²,

Daly³

et al. 2015

Aust. Health Review

View full text Add to dashboard Cite

show abstract

“…Andre påpeker at verdighet er et uunnvaerlig begrep fordi det legger noen grunnleggende rammer for en moralsk diskurs (50). Johnson påpekte at en verdig død er en interaktiv prosess mellom den døende og dennes hjelpere (51). Nordenfelt argumenterte for fire …”

Section: Verdighet I Livets Sluttfaseunclassified

“…Various kinds of Advance Care Directives or Advance Care Plans have been tried out in many countries [11,46,51,52]. However, studies have found difficulty in implementing formalized advance care directives or living wills [53][54][55].…”

Section: What Is Known From Before -What Does This Study Add?mentioning

confidence: 99%

Nursing Home Physicians’ Assessments of Barriers and Strategies for End-of-Life Care in Norway and The Netherlands

Fosse

Zuidema

Boersma

et al. 2017

Journal of the American Medical Directors Association

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Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns and Care Preferences and Finnish Care Policy’s Emphasis on Care at Home

Outila

Seppänen

Lantela

et al. 2019

International Perspectives on Aging

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In recent years, Finnish care policy has emphasised that older people should remain at home for as long as possible. Since the final stages of life and death will theoretically happen more often in the home, it is important to identify people's experiences and needs regarding end-oflife care and dying. The aim of this article is to provide knowledge on these questions from the perspective of the Northern Finnish people (N=294). Statistical analysis was used with data gathered from a survey of a random sample. People's wishes for their end-of-life place and carers and their end-of-life plans and concerns, are analysed as part of a social and cultural construction of dying and end-of-life care. The results show that people do have end-of-life concerns and that they consider end-of-life planning important but that few preparations are actually made. In many instances, home is regarded as the best place for end-of-life care and dying, but care institutions are also regarded positively. Reliance on professional care is very strong, even though people hope to receive care from family members as well. The results are discussed in the light of Finnish care policy and end-of-life culture.

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Experiences with advance care planning: older people and family members’ perspective

Cited by 45 publications

References 44 publications

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

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

Nursing Home Physicians’ Assessments of Barriers and Strategies for End-of-Life Care in Norway and The Netherlands

Bringing Dying Back Home? – Northern Finns’ End-of-Life Preparations, Concerns and Care Preferences and Finnish Care Policy’s Emphasis on Care at Home

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