An integrative review of stakeholder views on Advance Care Directives (ACD): Barriers and facilitators to initiation, documentation, storage, and implementation

Hemsley, Bronwyn; Meredith, Jacqueline; Bryant, Lucy; Wilson, Nathan J.; Higgins, Isabel; Georgiou, Andrew; Hill, Sophie; Balandin, Susan; McCarthy, Shaun

doi:10.1016/j.pec.2019.01.007

Cited by 39 publications

(46 citation statements)

References 94 publications

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“…7,36 Finally, the absence of an electronic repository and the lack of availability of supporting information often prevented healthcare professionals acquiescing to and respecting patients’ wishes, because sometimes these only existed in papers that the patients did not bring with them. 25…”

Section: Discussionmentioning

confidence: 99%

“…Evidence on the role of timing and advance directive documentation in enhancing end-of-life discussions is still lacking, 24,25 especially in non-English speaking countries where cultural aspects may affect the decision-making process. 26 For instance, a Catholic culture may promote a restrictive and prohibitive orientation with regard to the withdrawal of treatment.…”

Section: Introductionmentioning

confidence: 99%

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End-of-life care after the legal introduction of advance directives: A qualitative study involving healthcare professionals and family caregivers of patients with amyotrophic lateral sclerosis

Cipolletta

Reggiani

2020

Palliat Med

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Background: Advance care planning and advance directives play a key role in the care of life-threatening illnesses such as amyotrophic lateral sclerosis. Aim: The aim of the present study is to explore how the introduction of these features by law improves the experience of end-of-life care. Design: Five focus groups were conducted in Italy 1 year after the new law on advance directives was introduced. Setting/Participants: Purposive sampling was used to recruit 24 health professionals and 23 family caregivers of patients with amyotrophic lateral sclerosis, for a total of 47 participants. Results: The thematic analysis, conducted through the use of ATLAS.ti software, identified four thematic areas: best practices, managing difficulties, care relationships and proposals. The results indicated a lack of organization, collaboration and continuity on the part of healthcare services and professionals, a lack of information on palliative care, advance care planning, and advance directives. End-of-life care is often left to the good will of the individual professional. Difficulties can also derive from ethical dilemmas concerning end-of-life decision-making and from a lack of communication and relationships between health professionals, patients and their families. Conclusion: The introduction of advance directives by law has not been sufficient to improve end-of-life care. In order to make legal regulation effective, the organization of healthcare services needs to be improved and clearer procedures have to be implemented and shared with patients and families.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

End-of-life care after the legal introduction of advance directives: A qualitative study involving healthcare professionals and family caregivers of patients with amyotrophic lateral sclerosis

Cipolletta

Reggiani

2020

Palliat Med

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“…ACDs are documents completed by competent people and come into effect if the person subsequently loses capacity to make his or her own decisions. However, ACP documentation is sometimes completed by people other than the person concerned,3 6 21 26 30 which may also be of benefit for people without an ACD, who no longer have capacity. This is currently an underexplored area of ACP practice.…”

Section: Methods and Analysismentioning

confidence: 99%

“…For the potential benefits of ACDs and other documented outcomes of ACP to be realised, it is critical that documentation is accessible at the point of care should the person be unable to participate in decision-making 21 22. If healthcare providers do not have access to the person’s documented preferences when treatment decisions are required, the person may receive care that is inconsistent with their preferences 23.…”

Section: Introductionmentioning

confidence: 99%

Prospective multicentre cross-sectional audit among older Australians accessing health and residential aged care services: protocol for a national advance care directive prevalence study

et al. 2019

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IntroductionAdvance care planning (ACP), an ongoing communication and planning process, aims to clarify a person’s values and preferences, so these guide decision-making if the person becomes unable to make his or her own decisions. Ideally, ACP results in completion of advance care directives (ACD), documents completed by competent people outlining their values, treatment preferences and/or appointment of a substitute decision-maker (SDM). ACDs are most effective at the point of care, where they can be used to inform treatment decisions. Australian governments fund initiatives and have developed policy to increase ACD completion rates. However, little is known about the prevalence of ACDs at the point of care in Australian health services, making ACP evaluation efforts difficult. This study aims to determine the prevalence of ACDs in records of older people in Australian hospitals, aged care facilities and general practices.Methods and analysisThis is a national multicentre cross-sectional prevalence study in selected aged care facilities, hospitals and general practices. Following a 2017 feasibility study, a new protocol incorporating key learnings was developed. Sites will be recruited via expression of interest process. Health records of people aged ≥65 years, admitted to or attending services on study day(s) will be audited by trained staff from sites. Site-level data will be collected during the expression of interest. The primary outcome is the presence of at least one ACD in the health record. Secondary outcomes include prevalence of other documented outcomes of ACP (by health practitioner(s)/family/SDM), assessment of ACD quality and content and concordance between the person’s documented preferences and any medical treatment orders. Individuals and sites characteristics where ACDs are present will be explored.Ethics and disseminationProtocol approval by Austin Health Human Research Ethics Committee, Melbourne, Australia (reference: HREC/18/Austin/109). Results will be disseminated via peer-reviewed journals and conferences. Participating sites and jurisdictions will receive individualised reports of findings.

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“…A recent systematic review stated that multi-focal interventions may effectively remove barriers to end-of-life communication [16]. Such multifocal interventions may include amongst others a) facilitation of communication by specifically trained personnel, b) advance care planning, c) structured communication roles, responsibilities and processes, d) summarising patient end-of-life preferences and values using a questionnaire with feedback of this summary document to clinicians and e) psychoeducation for patients and relatives [16,19,20].…”

Section: Introductionmentioning

confidence: 99%

Collaborative advance care planning in advanced cancer patients: col-ACP –study – study protocol of a randomised controlled trial

et al. 2020

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Background: To assure patient-centred end-of-life care, palliative interventions need to account for patients' preferences. Advance care planning (ACP) is a structured approach that allows patients, relatives and physicians to discuss end-of-life decisions. Although ACP can improve several patient related outcomes, the implementation of ACP remains difficult. The col-ACP-study (collaborative advance care planning) will investigate a new ACP procedure (col-ACP-intervention (German: Hand-in-Hand Intervention)) in palliative cancer patients and their relatives that addresses individual values and targets barriers of communication before an ACP process. Methods: In a randomised controlled trial, 270 cancer patients without curative treatment options and their relatives will receive either 1) col-ACP 2) a supportive intervention (active control group) or 3) standard medical care (TAU). col-ACP comprises two steps: a) addressing various barriers of patients and relatives that discourage them from discussing end-of-life issues followed by b) a regular, structured ACP procedure. The col-ACP-intervention consists of 6 sessions. Primary endpoint is the patients' quality of life 16 weeks after randomisation. Secondary endpoints include measurements of distress; depression; communication barriers; caregivers' quality of life; existence of ACP or advance directives; the consistence of end of life care; and others. Patients will be followed up for 13 months. Multivariate analyses will be carried out. Qualitative evaluation of the intervention will be conducted. Discussion: Augmentation of a regular ACP program by a structured psycho-oncological intervention is an innovative approach to target barriers of communication about end-of-life issues. Study findings will help to understand the value of such a combined intervention in palliative care.

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An integrative review of stakeholder views on Advance Care Directives (ACD): Barriers and facilitators to initiation, documentation, storage, and implementation

Cited by 39 publications

References 94 publications

End-of-life care after the legal introduction of advance directives: A qualitative study involving healthcare professionals and family caregivers of patients with amyotrophic lateral sclerosis

End-of-life care after the legal introduction of advance directives: A qualitative study involving healthcare professionals and family caregivers of patients with amyotrophic lateral sclerosis

Prospective multicentre cross-sectional audit among older Australians accessing health and residential aged care services: protocol for a national advance care directive prevalence study

Collaborative advance care planning in advanced cancer patients: col-ACP –study – study protocol of a randomised controlled trial

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