Adolescents, Young Adults With Advanced Heart Disease Want More Active Role in Decision-Making


Approximately 56.6% of young adults with advanced heart disease prefer to be involved in end-of-life decisions if they were very ill, with nearly all patients saying that they would also like their parents to be involved.

Most adolescents and young adults with advanced heart disease wanted to have a more active role in their medical decision-making, according to the results of a survey study published in JAMA Network Open.

Word HEART FAILURE from white cubes with letters on dark background with red thread heart and tonometer. HEART FAILURE inscription with medical equipment for heart diagnostics, stethoscope | Image Credit: irissca -

irissca -

Study investigators concluded that interventions and education for physicians, patients with heart disease, and their caregivers are necessary to make sure that the decision-making and communication of the patient are met.

Patients and their caregivers were given a cross-sectional survey between July 2018 to April 2021. Individuals were at a single-center heart failure and transplant service at a Midwestern United States children’s hospital. Investigators analyzed the data from May 2021 to June 2022.

Patients included were aged 12 to 24 years with heart failure, listed for heart transplantation, or posttransplant with life-limiting complications. Their parent or caregiver was also included.

Investigators used single-time measurements of medical decision-making preferences, MyCHATT, and Lyon Family-Centered Advance Care Planning Survey as part of this study.

There were 56 patients enrolled in the study with 53 parent dyads. The median age was 17.8 years with 40 patients identifying as white and 13 identifying as a member of a racial or ethnic group or as multiracial. Approximately 64.2% of patients in the study were male.

Investigators found that approximately 45.3% of patients indicated that they preferred active and patient-led decision-making for their heart disease management. In contrast, 35.3% of parents said that they preferred if they and the physician made shared medical decisions on behalf of the patient.

Further, 23.5% if patents reported that they and their child should make medical decisions together, whereas 11.8% believed that their child should make their own medical decision.

Additionally, most patients stated a preference in discussing the adverse effects (AEs) or risk of treatment at 86.8%, procedural and/or surgical details at 84.9%, the impact of the condition on daily activities at 90.6%, and their prognosis at 79.2%. Approximately 56.6% preferred to be involved in end-of-life decisions if they were very ill.

Most parents said their child would want to discuss AEs or risk of treatment at 74.5%. procedural/surgical details at 86.3%, the impact of their condition on daily activities at 96.1%, and their prognosis at 72.5%.

Approximately 72.5% said their child would like to be involved in their own end-of-life decision-making, and nearly all patients said that they would also like their parents to be involved at 92.2%, but just more than half, at 58.8%, said they would want their physician to be involved.

Furthermore, the longer time since cardiac diagnosis and worse functional status were associated with a preference for more active and patient-led decision-making.

Investigators also found that sex, age, race, and ethnicity were unrelated to decision-making preferences. There were also no differences in preference for patients who had congenital heart disease compared with those who had cardiomyopathies or posttransplant complications.

Limitations of the study included a single-center study design. Investigators also said that more studies should be conducted to determine the impact of social determinants of health for these patients.


Cousino MK, Miller VA, Smith C, Lim HM, et al. Medical and end-of-life decision-making preferences in adolescents and young adults with advanced heart disease and their parents. JAMA Netw Open. 2023;6(5):e2311957. doi:10.1001/jamanetworkopen.2023.11957

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