Terminal Heart Disease in Pediatric Cardiology—Improvement of Disease Management by Pediatric Palliative Home Care

Objectives: As of the past, only few treatment options sustained for pediatric cardiac patients with terminal heart diseases. Pediatric Palliative Home Care (PPHC) offers a new approach to disease management within this collective. With Germany 2007 health reform, outpatient palliative care for children and adolescents was restructured and initially implemented at the university hospital for children and adolescents in Nuremberg-Erlangen in 2009, offering a “out of the box” interdisciplinary service for cardiac patients.

Methods: PPHC for cardiac patients at the Hospital for Children and Adolescents at the University of Erlangen-Nuremberg was retrospectively analyzed between the years 2011 to 2018 by systematically evaluating cardiac patients through corresponding medical records (paper-based and electronic).

Results: Twenty-one cardiac patients were supervised, 13 (61.9%) died during the investigated period with 46.2% of these having died at home; 62% deceased at location of preference, either as outpatients or if requested in a stationary setting. With increasing experience, the number of children, which deceased at desired locations, grew significantly. Besides accomplishing a classic palliative care in an outpatient setting, patients were given the opportunity of intervention in temporary crisis situations, completely redefining outpatient palliative care. For 57.1% of patients, palliative care provided this temporary form of care, releasing children stabilized and with significantly increased life quality for the time being.

Conclusion: The descriptive cohort demonstrates that palliative care in cardiac patients lacking curative treatment approaches is possible despite the medical and structural complexity and an improvement in an outpatient setting. Especially creating a form of medical care by interdisciplinary outpatient support in crisis situations offers patients and their families a valuable and efficient form of health care, redefining palliative medicine in which it is so far broadly still perceived as a solely inevitable soon to end in death medicine. This form of disease management in children and adolescents with complex terminal cardiac conditions offers a reasonable intermittent alternative in maintenance of life quality and is not necessarily an immediate final stretch in a dying process.