Role of Pediatric Palliative Care in German-Speaking Centers for Heart Transplantation

Background: Pediatric palliative care (PPC) aims to improve quality of life for patients with life-limiting diseases and complex symptoms irrespective of cure-directed therapy. Generally an early integration of PPC is recommended. This is also the case for pediatric cardiac patients on ventricular assist device (VAD) and/ or awaiting heart transplantation or with complex cardiac diseases (CD) before surgery. Many of these patients suffer from complex chronic conditions because the heart is not the only compromised organ. Different models of PPC are possible, which are the mixed model of care, the integrated model or a combination of both.

Methods: From January to May 2020 a questionnaire was sent to all 12 centers for pediatric cardiology (in D-A-CH), which perform heart transplantation. Questions of interest were the used models of PPC, the indication of consultation of PPC services and the attitude of the staff which patients should receive PPC. Data was then statistically analyzed by using descriptive analyzing methods.

Results: 44 nurses and 39 physicians from 11 centers answered the questionnaires. The majority of both nurses and physicians reported the availability of palliative care at their center, many even reported specialized pediatric palliative care. The integrated model of care was reported by 29,5% of the nurses and 20,8% of the physicians, whereas the mixed model of care was reported by 20,5% of the nurses and 23% of the doctors. The reasons for which PPC was consulted by nurses were organization of home-based care, defining goals of care and end-of-life care as well as the conversations with the relatives. For physicians, the organization of home-based care was priority, followed by questions to end-of-life care and symptom control. The need for an early consultation of a palliative care team, especially in complex cardiac patients was judged as important, especially by the nurses. In general the consultation of PPC specialists was favored by the nurses.

Conclusion: PPC is available at the most centers, but mainly consulted for end-of-life matters and less as part of an holistic treatment plan in terms of early integration. Being favored of PPC consultation by nurses might be due to an often-reported ethical dilemma. Nurses want to care and physicians want to cure, especially in pediatric cardiology where in the last years mere survival was the main goal. (Early) integration of PPC in the trajectory of the disease might become beneficial for all the CD-patients, especially for those with severe defects, severe (end stage) heart failure and additional compromised organ functions.

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Artikel online veröffentlicht:
13. Februar 2024