Cultural Factors Influencing Advance Care Planning in Progressive, Incurable Disease: A Systematic Review With Narrative Synthesis

McDermott, Ella; Selman, Lucy E

doi:10.1016/j.jpainsymman.2018.07.006

Cited by 99 publications

(92 citation statements)

References 61 publications

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“…ACP should primarily be about communication and the process of a patient becoming aware of and sharing their preferences and what drives them. 11 It must not be perceived as making concrete plans for care in the unpredictable future.…”

Section: Implications For Practicementioning

confidence: 99%

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Illness as Transformative Experience: Implications of Philosophy for Advance Care Planning

Hole

Selman

2020

Journal of Pain and Symptom Management

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Advance care planning has been shown to improve patient outcomes and is recommended as part of routine care for people with a life-limiting illness. Nevertheless, developing an advance care plan can be complex and challenging for both patients and family members, and the clinicians who support them. One complexity is that illness and its treatments often cannot be deeply understood without lived experience. In this paper, we explore this idea, highlighting how lived experience can bring about unpredictable changes in an individual's values and preferences. We examine the implications of such ''transformative experiences'' for advance care planning, using the hypothetical case study of Jean, an older person with advanced kidney disease. Finally, we consider consequences for clinical practice and how an understanding of transformative experience might enhance current approaches to advance care planning.

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Section: Implications For Practicementioning

confidence: 99%

“…10 It is therefore unsurprising that barriers to ACP have been documented. 9,11 Clinicians can struggle with discussing future deterioration and death and can be uncertain of their role in ACP and how best to support the process. 12,13 However, these complexities are rarely discussed in the literature.…”

Section: Introductionmentioning

confidence: 99%

Illness as Transformative Experience: Implications of Philosophy for Advance Care Planning

Hole

Selman

2020

Journal of Pain and Symptom Management

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“…Advance care planning is largely derived from Western countries,1 with a reliance on Western concepts of autonomy and decision making 2. Much advance care planning research is from the USA, UK and Europe,3 despite significant international cultural differences in the concept of autonomy and decision making 4 5. Lin et al ’s1 study from Taiwan provides a welcome perspective.…”

Section: Contextmentioning

confidence: 99%

Paying attention to cultural context matters in advance care planning and palliative care

Russell

2019

Evid Based Nurs

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“…Ensuring a patient's preferences are fulfilled is the most common priority for health practitioners during end-of-life care [3]. Engagement with, and completion of, ACP documents is influenced by cultural factors [6]. In Australia, ACP conversations can be emotionally challenging for both patients and practitioners but are of great value [7].…”

Section: Introductionmentioning

confidence: 99%

Communication of advance care planning decisions: a retrospective cohort study of documents in general practice

et al. 2020

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Background: Doctors, particularly general practitioners, play a significant role in assisting patients to create advance care plans. When medically indicated, these documents are important tools to promote congruence between endof-life care and patient's personal preferences. Despite this, little is known regarding the availability of these documents in hospitals. The aim of this study was to identify the proportion of people who died in hospital without an advance care plan and how many of these had advance care planning (ACP) documents in their general practice records. Methods: A retrospective cohort study was conducted of patient hospital records with manual linkage to general practice records. The large regional hospital in Victoria, Australia has a catchment population in excess of 300,000 people. The study sample was patients aged 75 years and over who died in the hospital between 1 January 2016 and 31 December 2017. The hospital records of these patients were examined to identify those which did not have a system alert for ACP documents on the file. Alerted ACP documents were limited to those legislated in the state of Victoria: advance care plan, Enduring Power of Attorney (Medical Treatment) or Enduring Power of Guardianship. Where no ACP document system alert was found in the hospital record, the patient's nominated general practice was consented to participate and the corresponding general practice record was examined. Data were analysed using descriptive statistics. Results: Of the 406 patients who died in hospital, 76.1% (309) did not have a system alert for any ACP document. Of the 309 hospital records without a system alert, 144 (46.7%) corresponding general practice records were examined. Of these, 14.6% included at least one ACP document, including four advance care plans, that were not available in hospital. Conclusions: Unless ACP documents are consistently communicated from general practice, patient's preferences may be unknown during end-of-life care. It is important that both doctors and patients are supported to use connected electronic health records to ensure that documents are readily available to healthcare staff when they are required.

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Cultural Factors Influencing Advance Care Planning in Progressive, Incurable Disease: A Systematic Review With Narrative Synthesis

Abstract: Many interconnected cultural factors influence the acceptability of ACP in progressive, incurable disease, although specific mechanisms remain unclear. A communication-focused approach to ACP may better meet the needs of culturally diverse populations.

Cited by 99 publications

References 61 publications

Illness as Transformative Experience: Implications of Philosophy for Advance Care Planning

Illness as Transformative Experience: Implications of Philosophy for Advance Care Planning

Paying attention to cultural context matters in advance care planning and palliative care

Communication of advance care planning decisions: a retrospective cohort study of documents in general practice

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