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Facilitators of and barriers to advance care planning in adult congenital heart disease.
Congenit Heart Dis. 2013 Jul-Aug; 8(4):281-8.CH

Abstract

BACKGROUND

Most adults with congenital heart disease (CHD) are interested in discussing matters related to advance care planning (ACP) early in the disease course, yet few such conversations actually occur. We aimed to evaluate factors that impact these discussions between patients and adult CHD providers.

METHODS

Two hundred adult CHD outpatients completed a survey that included factors that might impact ACP discussions with their doctors. In parallel, forty-eight providers within the Canadian Adult Congenital Heart Network completed a similar online survey. Responses were compared between the groups.

RESULTS

Most providers (85%) worried that they were unable to reliably estimate life expectancy and believed that patients were not ready for end-of-life discussions if their estimated life expectancies were beyond 5 years (63%) or beyond 10 years (79%). In contrast, only 24% of patients, independent of disease complexity, thought they were not ready to talk about ACP. Most providers (83%) reported that greater certainty about patients' prognoses would help them discuss ACP. Patients thought that such discussions were best facilitated when they had trust in their doctors (85%) and believed their doctors are good at taking care of patients with CHD (78%).

CONCLUSION

Despite the fact that challenges to prognostication exist, discussions about ACP should not be reserved for patients with a severely reduced life expectancy. Most patients want these discussions regardless of the complexity of their disease. The trusting and close patient-doctor relationship in adult CHD, often evolving over many years, may provide an excellent platform from which to initiate such discussions.

Authors+Show Affiliations

Division of Cardiology, University Hospital of Zurich, Zurich, Switzerland.No affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info available

Pub Type(s)

Journal Article

Language

eng

PubMed ID

23279997

Citation

Greutmann, Matthias, et al. "Facilitators of and Barriers to Advance Care Planning in Adult Congenital Heart Disease." Congenital Heart Disease, vol. 8, no. 4, 2013, pp. 281-8.
Greutmann M, Tobler D, Colman JM, et al. Facilitators of and barriers to advance care planning in adult congenital heart disease. Congenit Heart Dis. 2013;8(4):281-8.
Greutmann, M., Tobler, D., Colman, J. M., Greutmann-Yantiri, M., Librach, S. L., & Kovacs, A. H. (2013). Facilitators of and barriers to advance care planning in adult congenital heart disease. Congenital Heart Disease, 8(4), 281-8. https://doi.org/10.1111/chd.12025
Greutmann M, et al. Facilitators of and Barriers to Advance Care Planning in Adult Congenital Heart Disease. Congenit Heart Dis. 2013 Jul-Aug;8(4):281-8. PubMed PMID: 23279997.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Facilitators of and barriers to advance care planning in adult congenital heart disease. AU - Greutmann,Matthias, AU - Tobler,Daniel, AU - Colman,Jack M, AU - Greutmann-Yantiri,Mehtap, AU - Librach,S Lawrence, AU - Kovacs,Adrienne H, Y1 - 2012/12/27/ PY - 2012/11/12/accepted PY - 2013/1/3/entrez PY - 2013/1/3/pubmed PY - 2014/2/27/medline KW - Advance Care Planning KW - Congenital Heart Disease KW - End-of-Life KW - Heart Failure SP - 281 EP - 8 JF - Congenital heart disease JO - Congenit Heart Dis VL - 8 IS - 4 N2 - BACKGROUND: Most adults with congenital heart disease (CHD) are interested in discussing matters related to advance care planning (ACP) early in the disease course, yet few such conversations actually occur. We aimed to evaluate factors that impact these discussions between patients and adult CHD providers. METHODS: Two hundred adult CHD outpatients completed a survey that included factors that might impact ACP discussions with their doctors. In parallel, forty-eight providers within the Canadian Adult Congenital Heart Network completed a similar online survey. Responses were compared between the groups. RESULTS: Most providers (85%) worried that they were unable to reliably estimate life expectancy and believed that patients were not ready for end-of-life discussions if their estimated life expectancies were beyond 5 years (63%) or beyond 10 years (79%). In contrast, only 24% of patients, independent of disease complexity, thought they were not ready to talk about ACP. Most providers (83%) reported that greater certainty about patients' prognoses would help them discuss ACP. Patients thought that such discussions were best facilitated when they had trust in their doctors (85%) and believed their doctors are good at taking care of patients with CHD (78%). CONCLUSION: Despite the fact that challenges to prognostication exist, discussions about ACP should not be reserved for patients with a severely reduced life expectancy. Most patients want these discussions regardless of the complexity of their disease. The trusting and close patient-doctor relationship in adult CHD, often evolving over many years, may provide an excellent platform from which to initiate such discussions. SN - 1747-0803 UR - https://www.unboundmedicine.com/medline/citation/23279997/Facilitators_of_and_barriers_to_advance_care_planning_in_adult_congenital_heart_disease_ L2 - https://doi.org/10.1111/chd.12025 DB - PRIME DP - Unbound Medicine ER -