With the End in Mind—Role of Palliative Care for Adults with Congenital Heart Disease

Background: Adults with congenital heart disease (ACHD) are a group of patients that continues to grow due to advances in the management of congenital heart disease. The life expectancy of this patient group is significantly lower compared with the average population due to a high risk of suffering from conditions followed or caused by the congenital heart defect. Therefore, ACHD patients should clarify in advance their opinion of possible treatment in critical situations. This strategy is called „Advance Care Planning“ (ACP) which is also an integral part of palliative care. Many studies show that most ACHD patients wish to plan ahead while they are still relatively healthy. The reality however reveals often a shortfall of ACP. The aim of the present study is to assess the current palliative care situation of ACHD in Germany.

Methods: Physicians with the additional qualification “Adults with Congenital Heart Defects” were asked with a designated questionnaire. The questionnaire contains 17 multiple-choice questions. Of the 229 ACHD physicians in Germany we were able to contact, 57 participated in this survey. Their responses were analyzed using the data processing program SPSS.

Results: The vast majority of respondents (~87%) say only ~0–25% of their patients have advance directives. Only 11% actively address their patients, 30% do not do so at all, and 56% do so only in cases of severe disease progression. “Shortage of time” is the main reason cited as an obstacle to such discussions. A “lack of established structure or routine” was also mentioned. The need for psychosocial support is nevertheless rated as “very high” or “high” by approx. 91%. At the same time however, respondents have the impression that this need is only “covered to a limited extent” (approx. 58%), if at all. The vast majority of respondents consider separate consultation hours or outpatient clinics for an Advance Care Planning process for EMAH patients to be useful (~60%).

Conclusion: The results allow us to conclude that the needs for psychosocial support of ACHD are not sufficiently met, nor are they sufficiently connected to palliative care. However, although the need for an ACP service is well perceived by the attending physicians, there is a lack of time and appropriate structures to ensure optimal care. These results concerning the care situation of ACHD in Germany are largely consistent with findings from various international studies. Appropriate educational measures could be a supportive option both within the patient group and among the physicians who treat them. One solution might be the initiation of separate and specific ACP-programs in outpatient clinics for ACHD patients.

Publication History

Article published online:
13 February 2024