Barriers to Goals of Care Discussions With Patients Who Have Advanced Heart Failure: Results of a Multicenter Survey of Hospital-Based Cardiology Clinicians

You, John J.; Aleksova, Natasha; Ducharme, Anique; MacIver, Jane; Mielniczuk, Lisa; Fowler, Robert; Demers, Catherine; Clarke, Brian; Parent, Marie-Claude; Toma, Mustafa; Strachan, Patricia H.; Farand, Paul; Isaac, Debra; Zieroth, Shelley; Swinton, Marilyn; Jiang, Xuran; Day, Andrew G.; Heyland, Daren K.; Ross, Heather J.

doi:10.1016/j.cardfail.2017.06.003

Cited by 33 publications

(37 citation statements)

References 49 publications

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“…17 Previous Canadian studies showed that the greatest barriers to discussions regarding goals of care, as perceived by clinicians, were patient and family factors, especially "difficulty understanding the limitations/complications of life sustaining therapies, [and] lack of agreement among family members." 18,19 The public perspective in our study supports that patient, and family factors are major barriers to overcome. Although lacking medical knowledge was identified as a barrier by our respondents, multiple themes emerged regarding difficulty knowing how best to prepare for such a high-stakes life-altering event, including a fear of decision-making guilt, and a need to overcome sociocultural barriers and family conflict.…”

Section: Discussionsupporting

confidence: 55%

Gaps in public preparedness to be a substitute decision-maker and the acceptability of high school education on resuscitation and end-of-life care: a mixed-methods study

Wong

Médor

Labre

et al. 2019

cmajo

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Background: When a patient is incapable of making medical decisions for him-or herself, a substitute decision-maker makes choices according to the patient's previously expressed wishes, values and beliefs; however, little is known about public readiness to act as a substitute decision-maker in Canada. Our primary objective was to measure public self-reported preparedness to act as a substitute decision-maker, and explore the attitudes, barriers and enablers associated with preparedness. Methods: From November 2017 to June 2018, we conducted a mixed-methods street intercept survey at 12 pedestrian areas in Ottawa, Ontario. We used descriptive statistics and logistic regression analysis to assess predictors of perceived preparedness to be a substitute decision-maker and determine support for high school education. We analyzed qualitative interview questions using inductive thematic analysis. Results: Of the 626 eligible respondents, 196 refused to participate, leaving 430 participants (response rate 68.7%). A total of 404 surveys (94.0%) were fully complete with no missing data. The respondents were mostly female (243 [56.5%]) and residents of Ontario (364 [84.6%]). The average age was 33.9 years. Although 314 respondents (73.0%) felt prepared to be a substitute decisionmaker, 194 (45.1%) reported never having had meaningful conversations with loved ones to understand their wishes in the event of critical illness. A total of 293 participants (68.1%) identified important barriers to feeling prepared. Most respondents (309 [71.9%]) agreed that high school students should learn about being a substitute decision-maker, citing age appropriateness, potential societal benefit and improved decision-making, while cautioning the need to respect different maturity levels, cultures and experiences. Interpretation: The lack of conversation between loved ones reveals a gap between perceived and actual preparedness to be a substitute decision-maker for a loved one with a critical illness. The overall acceptability of high school education warrants further exploration.

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Section: Discussionsupporting

confidence: 55%

Gaps in public preparedness to be a substitute decision-maker and the acceptability of high school education on resuscitation and end-of-life care: a mixed-methods study

Wong

Médor

Labre

et al. 2019

cmajo

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show abstract

“…Despite recommendations from multiple medical associations in cardiology to integrate end-of-life communication early in the illness trajectory [15–18], cardiologists often assign the responsibility of end-of-life discussions to other disciplines such as palliative medicine and primary care [14], in part because clinicians feel underprepared to initiate end-of-life discussions [19, 20]. Above all, clinicians have reported patient- and family- related factors to be the most important barriers of end-of-life communication [21]. In a survey of clinicians in cardiology, You and colleagues reported difficulty with accepting prognosis and lack of understanding of end-of-life treatments among patients and family members as the most important barriers of goals-of-care discussions.…”

Section: Introductionmentioning

confidence: 99%

“Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study

Mak

Upshur

et al. 2019

BMC Palliat Care

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BackgroundEffective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness. This study explores the challenges of integrating end-of-life communication into heart failure management from the perspectives of older adults and family caregivers.MethodsIn a qualitative study of older adults with heart failure and their family caregivers, fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. The interviews were transcribed verbatim and thematic analysis was applied to analyze the data.ResultsFour themes were identified in the context of participants’ understanding of illness: 1) trivializing illness-related challenges, 2) positivity in late life, 3) discomfort in having end-of-life conversations, and 4) reluctant to engage despite need. These challenges often intertwine with one another. Most participants had not engaged in end-of-life discussions with their clinicians or family members.ConclusionThe findings provide insights that can inform approaches to integrate end-of-life communication for older adults with serious illness and caregivers. The identified challenges highlight a need for end-of-life communication to occur earlier in illness to be able to support individuals throughout the period of decline. In addition, end-of-life communication should be introduced iteratively for those who may not be ready to engage. Alternative approaches to communication are needed to elicit the challenges that patients and caregivers experience throughout the progression of illness to improve care for people nearing the end of life.

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“…[45,46] The description of ACP barriers described by clinicians has recurring themes of poor understanding of prognosis, ignorance of the limitations of life-sustaining therapies, and lack of capacity to understand goals of care conversations on the part of patients, families, and caregivers. [43,44,47] Ironically, this is not likely the result of poor understanding by patients and their families regarding the role of ACP and use of advance directives. This is the result of initiating ACP too late in course of a chronic and eventual terminal illness.…”

Section: Gaps In Advocacymentioning

confidence: 99%

Advance Care Planning in Healthcare Systems: A Literature Review and Call to Action

2019

ARC Journal of Nursing and Healthcare

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Advance care planning is a vital part of healthcare delivery concordant with patient wishes. The practice of advance care planning entails patient-provider conversations regarding treatment wishes including end-of-life care, documentation of these decisions by advance directives, and action upon such decisions at the appropriate time. Despite patient and provider appreciation of advance care planning, the practice remains under-utilized. In this review we discuss the history and benefits of advance care planning. We describe the features of efficient practice of advance care planning and perceived barriers that need surpassing. Finally, we discuss potential clinical pathways, the need for research in advance care planning, and stakeholder action needed to promote advance care planning across healthcare systems.

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Barriers to Goals of Care Discussions With Patients Who Have Advanced Heart Failure: Results of a Multicenter Survey of Hospital-Based Cardiology Clinicians

Cited by 33 publications

References 49 publications

Gaps in public preparedness to be a substitute decision-maker and the acceptability of high school education on resuscitation and end-of-life care: a mixed-methods study

Gaps in public preparedness to be a substitute decision-maker and the acceptability of high school education on resuscitation and end-of-life care: a mixed-methods study

“Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study

Advance Care Planning in Healthcare Systems: A Literature Review and Call to Action

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