Improving outpatient advance care planning for adults with congenital or pediatric heart disease followed in a pediatric heart failure and transplant clinic

Edwards, Lindsay A; Bui, Christine; Cabrera, Antonio G.; Jarrell, Jill Ann

doi:10.1111/chd.12579

Cited by 17 publications

(13 citation statements)

References 13 publications

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“…Others have implemented standardized advance care planning scripts and documents for young adults seen in pediatric cardiology clinics. 37 Prospective research on clinical outcomes associated with these interventions will be needed to support continued, broader-scale implementation. Finally, as has been done in adult cardiology, 32,33 it is important to examine the impact of palliative care involvement on pediatric heart failure and transplant populations.…”

Section: Discussionmentioning

confidence: 99%

“…[31][32][33] Clinically, future directions include the development of practice guidelines specific to pediatric advanced heart disease. End-of-life care practice guidelines specific to pediatric oncology 34 and adult heart failure, 35 combined with the growing literature on end-of-life care in pediatric advanced heart disease, 12,13,[18][19][20]28,36,37 will provide the foundation for the development of these guidelines. In addition, interventions aimed at helping parents and medical providers assess the communication and decision-making preferences of young people with heart disease and then provide opportunities for decision-making involvement that is consistent with such preferences is an important next step.…”

Section: Implications For Research and Clinical Practicementioning

confidence: 99%

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Medical and end-of-life decision making in adolescents’ pre-heart transplant: A descriptive pilot study

et al. 2019

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Background: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and end-of-life decision-making preferences. Aim: (1) To examine adolescent/young adult decision-making involvement specific to heart transplant listing, and (2) to characterize their preferences specific to medical and end-of-life decision making. Design: This cross-sectional research study utilized survey methods. Data were collected from October 2016 to March 2018. Setting/participants: Twelve adolescent and young adult patients listed for heart transplant (ages = 12–19 years) and one parent for each were enrolled at a single-center, US children’s hospital. Results: Consistent with their preferences, the majority of adolescent/young adult participants (82%) perceived a high level of involvement in the decision to be listed for transplant. Patient involvement in this decision was primarily by way of seeking advice or information from their parents and being asked to express their opinion from parents. Despite a preference among patients to discuss their prognosis and be involved in end-of-life decision making if seriously ill, only 42% of patients had discussed their end-of-life wishes with anyone. Few parents recounted having such discussions. Preferences regarding the timing and nature of end-of-life decision-making discussions varied. Conclusions: Although young people are involved in the decision to pursue heart transplantation, little attention is paid to involving them in discussions regarding end-of-life decision making in a manner that is consistent with individual preferences.

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Section: Discussionmentioning

confidence: 99%

Section: Implications For Research and Clinical Practicementioning

confidence: 99%

Medical and end-of-life decision making in adolescents’ pre-heart transplant: A descriptive pilot study

et al. 2019

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“…The other one-third provided guidance to the conversation by suggesting topics and prompts, but in a less structured format (Intervention no. : 3,6,8,10,11,15,16,19,20,23,32,34).…”

Section: Intervention Characteristicsmentioning

confidence: 99%

“…Twelve observational studies and 9 mixed-methods studies showed similar results, reporting a positive trend toward sharing of information with surrogates 22,23,35,42,65,67 and improved documentation rates (Tables 5 and 6). 16,23,42,43,48,49,60,61 Studies evaluating patient's perspectives on ACP conversations reported a perceived positive experience. 20,22,28,42,67,72,75 Qualitative data showed that participation in ACP conversations was experienced as positive and beneficial by participants on the one hand (Appendix Table A7).…”

Section: Feasibility and Effectivenessmentioning

confidence: 99%

Interventions Guiding Advance Care Planning Conversations: A Systematic Review

Fahner

Beunders

Heide

et al. 2019

Journal of the American Medical Directors Association

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Background: Advance care planning (ACP) is a communicative process of defining preferences for future medical care. Conversation guides support professionals to conduct ACP conversations, yet insight into essential components is limited. Objectives: To evaluate the content, rationale, and empirical evidence on the effect of ACP interventions based on conversation guides. Methods: MEDLINE, Embase, PsycINFO, and CINAHL were searched from January 1, 1998, to February 23, 2018, to identify peer-reviewed articles describing or evaluating ACP interventions based on scripted conversation guides. A thematic analysis of the guides was performed. Data on intervention characteristics, underlying rationale, and empirical evidence were extracted by 2 authors independently using a predesigned form. Assessment of risk of bias and quality of reporting was performed using Cochrane tools and COREQ, respectively. Results: Eighty-two articles reporting on 34 unique interventions met the inclusion criteria. Analysis of the conversation guides revealed a framework for ACP conversations consisting of 4 phases: preparation, initiation, exploration, and action. Exploration of patient's perspectives on illness, living well, end-of-life (EOL) issues, and decision making formed the core part of the guides. Their design was often expertbased, without an underlying theoretical background. Empirical evidence on the effect of the interventions was based on heterogeneous outcome measures. Dyad congruence and preference documentation rates increased among intervention subjects in most studies. The studies showed varying effects on knowledge of ACP, decisional conflict, quality of communication, and preferences-concordant care. Qualitative research showed that participants appreciate the importance and benefits of ACP conversations, yet perceive them as difficult and emotional. Conclusion: ACP conversation guides address a diversity of themes regarding illness, EOL issues, and decision making. There is a focus on the exploration of patient's perspectives and preferences. Evidence on the translation of explorative information into specific treatment preferences and consequences for care as provided is limited.

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“…Andre studier viser at introduksjon av tverrfaglig, palliativ oppfølging fra diagnosetidspunkt kan bidra til å styrke pasientens og familiens autonomi og deres evne til å ta beslutninger ved vanskelige veivalg (4). Unge voksne med medfødte, komplekse hjertefeil ga uttrykk for at de opplevde forhåndssamtaler («advance care planning») som positivt (5).…”

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Palliativ oppfølging til barn med univentrikulære hjerter

Lee¹

2019

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Improving outpatient advance care planning for adults with congenital or pediatric heart disease followed in a pediatric heart failure and transplant clinic

Cited by 17 publications

References 13 publications

Medical and end-of-life decision making in adolescents’ pre-heart transplant: A descriptive pilot study

Medical and end-of-life decision making in adolescents’ pre-heart transplant: A descriptive pilot study

Interventions Guiding Advance Care Planning Conversations: A Systematic Review

Palliativ oppfølging til barn med univentrikulære hjerter

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