Palliative Care Across the Life Span for Children With Heart Disease: A Scientific Statement From the American Heart Association

Blume, Elizabeth D.; Kirsch, Roxanne; Cousino, Melissa K.; Walter, Jennifer K.; Steiner, Jill M.; Miller, Tim; Machado, Desiree; Peyton, Christine; Bacha, Emile A.; Morell, Emily

doi:10.1161/hcq.0000000000000114

Cited by 19 publications

(15 citation statements)

References 194 publications

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“…The current study underscores the importance of assessing communication and decision-making preferences early in the cardiac disease course, which is in line with the recent American Heart Association clinical practice guideline on palliative care in pediatric cardiology. 29 Consistent with other studies, 28 few demographic and medical variables were associated with AYA decision-making preferences in the current study. As such, individualized assessment of communication and decision-making preferences should occur for each unique patient encounter, regardless of diagnosis, disease state, age, or symptom burden.…”

Section: Discussionsupporting

confidence: 90%

“…Both clinicians and parents/caregivers may be underestimating the degree to which AYAs want to be actively involved in their heart disease decision-making. The current study underscores the importance of assessing communication and decision-making preferences early in the cardiac disease course, which is in line with the recent American Heart Association clinical practice guideline on palliative care in pediatric cardiology . Consistent with other studies, few demographic and medical variables were associated with AYA decision-making preferences in the current study.…”

Section: Discussionsupporting

confidence: 88%

Section: Discussionmentioning

confidence: 99%

“…Second, bolstering training and educational programs for cardiology clinicians specific to AYA communication and decision-making in heart disease care and at end-of-life is an important next step. 29 In a survey of pediatric cardiologists, only one-third endorsed competence prognosticating life expectancy and two-thirds indicated competence in caring for children with heart disease at end of life. 32 With a majority of AYAs in the current study stating a preference to discuss their prognosis and end-of-life decision-making, better preparing cardiology clinicians to have these conversations, even amidst uncertainty, will be helpful in meeting AYA preferences.…”

Section: Discussionmentioning

confidence: 99%

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Medical and End-of-Life Decision-Making Preferences in Adolescents and Young Adults with Advanced Heart Disease and Their Parents

et al. 2023

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ImportanceDespite high disease morbidity and mortality and complex treatment decisions, little is known about the medical and end-of-life decision-making preferences of adolescents and young adults (AYA) with advanced heart disease. AYA decision-making involvement is associated with important outcomes in other chronic illness groups.ObjectiveTo characterize decision-making preferences of AYAs with advanced heart disease and their parents and determine factors associated with these preferences.Design, Setting, and ParticipantsCross-sectional survey between July 2018 and April 2021 at a single-center heart failure/transplant service at a Midwestern US children’s hospital. Participants were AYAs aged 12 to 24 years with heart failure, listed for heart transplantation, or posttransplant with life-limiting complications and a parent/caregiver. Data were analyzed from May 2021 to June 2022.Main Outcomes and MeasuresSingle-item measure of medical decision-making preferences, MyCHATT, and Lyon Family-Centered Advance Care Planning Survey.ResultsFifty-six of 63 eligible patients enrolled in the study (88.9%) with 53 AYA-parent dyads. Median (IQR) patient age was 17.8 (15.8-19.0) years; 34 (64.2%) patients were male, and 40 patients (75.5%) identified as White and 13 patients (24.5%) identified as members of a racial or ethnic minority group or multiracial. The greatest proportion of AYA participants (24 of 53 participants [45.3%]) indicated a preference for active, patient-led decision-making specific to heart disease management, while the greatest proportion of parents (18 of 51 participants [35.3%]) preferred they and physician(s) make shared medical decisions on behalf of their AYA, representing AYA-parent decision-making discordance (χ2 = 11.7; P = .01). Most AYA participants stated a preference to discuss adverse effects or risks of treatment (46 of 53 participants [86.8%]), procedural and/or surgical details (45 of 53 participants [84.9%]), impact of condition on daily activities (48 of 53 participants [90.6%]), and their prognosis (42 of 53 participants [79.2%]). More than half of AYAs preferred to be involved in end-of-life decisions if very ill (30 of 53 participants [56.6%]). Longer time since cardiac diagnosis (r = 0.32; P = .02) and worse functional status (mean [SD] 4.3 [1.4] in New York Heart Association class III or IV vs 2.8 [1.8] in New York Heart Association class I or II; t-value = 2.7; P = .01) were associated with a preference for more active, patient-led decision-making.Conclusions and RelevanceIn this survey study, most AYAs with advanced heart disease favored active roles in medical decision-making. Interventions and educational efforts targeting clinicians, AYAs with heart disease, and their caregivers are needed to ensure they are meeting the decision-making and communication preferences of this patient population with complex disease and treatment courses.

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Section: Discussionsupporting

confidence: 90%

Section: Discussionsupporting

confidence: 88%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Medical and End-of-Life Decision-Making Preferences in Adolescents and Young Adults with Advanced Heart Disease and Their Parents

et al. 2023

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“…76 Likewise, there is an American Heart Association scientific statement that outlines the importance of early and longitudinal primary palliative care from the cardiovascular clinician through each phase of their care, from diagnosis to end of life. 87 They advocate for routine quality-of-life assessments at follow-up visits, and clear referral guidelines for specialist palliative care referral, as well. Like the other areas of CVD, further research is needed to assess the effect of palliative care on patients with complex ACHD.…”

Section: Palliative Care For Quality Of Life In Adult Congenital Hear...mentioning

confidence: 99%

Expanding the Paradigm for Cardiovascular Palliative Care

Godfrey,

Kirkpatrick,

Kramer

et al. 2023

Circulation

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Cardiovascular disease (CVD) is the leading cause of death worldwide. Despite medical advances, patients with CVD experience high morbidity and mortality rates, affecting their quality of life and death. Among CVD conditions, palliative care has been studied mostly in patients with heart failure, where palliative care interventions have been associated with improvements in patient-centered outcomes, including quality of life, end-of-life care, and health care use. Although palliative care is now incorporated into the American Heart Association/American College of Cardiology/Heart Failure Society of America guidelines for heart failure, the role of palliative care for non–heart failure CVD remains uncertain. Across all causes of CVD, palliative care can play an important role in all domains of CVD care from initial diagnosis to terminal care. In addition to general cardiovascular palliative care practices applicable to all areas, disease-specific palliative care needs may warrant individualized palliative care models. In this review, we discuss the role of cardiovascular palliative care for ischemic heart disease, valvular disease, arrhythmias, peripheral artery disease, and adult congenital heart disease. Although there are multiple barriers to cardiovascular palliative care, we recommend a framework for studying and developing cardiovascular palliative care models to improve patient-centered goal-concordant care for this underserved patient population.

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