Perspectives on advance care planning and palliative care among adults with congenital heart disease.
Congenit Heart Dis
; 14(3): 403-409, 2019 May.
Article
em En
| MEDLINE
| ID: mdl-30575286
ABSTRACT
BACKGROUND:
Patients with adult congenital heart disease (ACHD) report that advance care planning (ACP) is important, and that they want information about prognosis. However, recognizing importance and being willing to participate are different constructs, and how and when to begin ACP and palliative care discussions remains ill-defined.METHODS:
We conducted a cross-sectional survey of 150 consecutive outpatients to assess willingness to participate in ACP, with whom, and important barriers and facilitators to these discussions.RESULTS:
The majority of participants (69%) reported being willing to participate in ACP; 79% to have a meeting to discuss goals and care preferences; and 91% to speak to a clinician who specializes in palliative care. Being married and anticipating a shorter lifespan were associated with increased reported willingness to participate in ACP. The health care provider with whom most participants preferred to have these discussions was their ACHD clinician. Participants identified important barriers and facilitators to these discussions.CONCLUSION:
Patients with ACHD report being willing to participate in ACP and palliative care discussions. Patients prefer to have these discussions with their ACHD clinicians, thus ACHD clinicians need to be prepared to address these issues as part of routine care.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Cuidados Paliativos
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Participação do Paciente
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Relações Médico-Paciente
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Papel do Médico
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Comunicação
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Planejamento Antecipado de Cuidados
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Cardiopatias Congênitas
Tipo de estudo:
Diagnostic_studies
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Observational_studies
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Prevalence_studies
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Prognostic_studies
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Qualitative_research
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Risk_factors_studies
Limite:
Adult
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Female
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Humans
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Male
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Middle aged
Idioma:
En
Revista:
Congenit Heart Dis
Assunto da revista:
CARDIOLOGIA
Ano de publicação:
2019
Tipo de documento:
Article