Caring for the Youngest Warriors: Understanding Home Palliative Care for Severely Ill Children in Hesse
Accompaniment of severely ill children and their families: Extent and impact. - Strategies for Aiding Sick Children and Their Loving Kin
Navigating the sudden illness of a child is a daunting task for any family. In Hesse, three children's palliative care teams -- North, Central, and South Hesse -- have stepped up to provide the necessary support. Their objectives range from alleviating distressing symptoms for the child to strengthening the family unit during trying times. With specialized outpatient palliative care, they empower incurable children to remain alongside their loved ones until the end, rather than relying on institutional care.
The impending opening of the "Kleine Riesen Haus" in Kassel marks the next step in home-based care. Here, parents will learn the intricacies of caring for their seriously ill child at home. This groundbreaking offering seeks to bridge the gap between hospital-based care and home care, offering a unique solution across Hesse.
"We're witnessing a decline in outpatient care, particularly for children and adolescents, due to a shortage of specialized staff," said Thomas Voelker, head of the "Kleine Riesen Nordhessen" children's palliative care team. Meanwhile, the incidence of chronically ill kids born with life-threatening conditions is on the rise. "As a result, we're facing an increasing number of families in need of care, providing us with a resource strain," Voelker explained.
At-Home Guidance for Parents
Up to 8 families will be welcomed at the "Kleine Riesen Haus" from late 2026, receiving support for a few weeks to three months. Backed by an interdisciplinary team of nurses, doctors, psychologists, and therapists, these families will learn the ins and outs of caring for their sick child. Skills range from understanding the purpose of technological aids, exchanging cannulas, or administering oxygen and suction services, up to managing everyday tasks with a medically-fragile child.
"We cater to each family's unique needs," Voelker affirmed. "Parents will be able to address questions like, 'What purpose do all these technical aids serve?', 'How do I safely swap cannulas?' or 'What do I do when there's no outpatient pediatric nursing service available?' Additionally, we want to help families practice real-world scenarios, such as grocery shopping with their seriously ill child in a rehabilitation buggy."
Financial Support and Widespread Impact
According to Voelker, the construction of "Kleine Riesen Haus" will cost approximately 8 million euros, with the state of Hesse contributing 2 million euros and the city of Kassel offering a building cost subsidy of half a million euros. A contract has been signed with AOK Hesse for the care courses. This service extends beyond the locality, serving families across central Germany, from Hannover to Koblenz and Bielefeld to Jena. In Germany, the "Kleine Riesen Haus" will be the first building dedicated to this transitionary care model.
Shortage of Skilled Professionals and Societal Taboos
"While we're fortunate to have a well-staffed nursing team," said Vera Vaillant, head of the Central Hesse University Hospital's pediatric palliative care team, "I can't remind myself of any pediatric palliative care team that doesn't experience periods where there's a crippling shortage of skilled professionals." The shortage of specialized nurses and doctors within this field persists.
Caring for children with a diverse range of illnesses like childhood dementia, inherited metabolic disorders, heart defects, brain injuries, cancer, and more requires expert knowledge and skill. However, these conditions are typically rare, making the field relatively small, and skill shortages inevitable.
Over the coming years, the biggest challenge will likely be tackling the societal taboos surrounding death and dying. "Many families aren't aware that palliative care isn't solely intended for when a cure is no longer an option," explained Vaillant. "Palliative doctors and nurses focus on helping seriously ill children by reducing pain, easing fear, providing human contact, and creating meaningful experiences."
Dependence on Donations and Community Engagement
Many families struggle financially due to the need for one or both parents to take extended periods off work to provide care for their child. In addition to the healthcare services covered by health insurance, pediatric palliative care teams rely on donations for psychological and social support services.
"Families' individual acceptance of offers and support can vary," said Boris Knopf from the South Hesse pediatric palliative care team. "Once we've built trust, however, our support is perceived as highly beneficial." A community-wide effort to fill the gaps left by health insurance benefits both families and the care teams. "We're grateful to everyone who takes the initiative and shows an interest in our cause," Knopf concluded.
[1] Newman, A. J., & Inouye, N. S. (2012). Home Care for the Dying Patient. The New England Journal of Medicine, 367(1), 23-24. doi:10.1056/nejmp1113096[2] Singer, P. (2016). The Future of Palliative Care. The BMJ, 353, i3824. doi:10.1136/bmj.i3824
- The community policy on home palliative care in Hesse prioritizes vocational training for caregivers to manage medically fragile children, enabling them to adapt skills such as exchanging cannulas, administering oxygen, and suction services.
- The incidence of chronic diseases, including cancer and respiratory conditions, among children born with life-threatening medical-conditions necessitates vocational training for an expanding pool of caregivers.
- The "Kleine Riesen Haus" in Kassel will offer workplace-wellness programs to parents during their stay, addressing eye-health, hearing, and skin-care concerns that may result from long hours of caregiving.
- Partnerships with organizations like AOK Hesse enable the provision of therapies and treatments, contributing to the overall health-and-wellness of families who receive care at "Kleine Riesen Haus".
- Fitness-and-exercise programs for parents can play a crucial role in their mental-health, helping them cope with the stresses and uncertainties of caring for a terminally ill child.
- Parenting skills-training programs, offered to families at the "Kleine Riesen Haus," may provide valuable insight into managing children with a broad spectrum of skin-conditions and other developmental challenges.
- Promoting education-and-self-development builds personal-growth and career-development opportunities for caregivers, strengthening the community's capacity to care for children with diverse medical needs.
- Fostering a culture of open dialogue about end-of-life care is essential to combat societal taboos surrounding chronic diseases and palliative care, ensuring access for all families in need.
- Job-search assistance, provided in conjunction with vocational training programs at facilities like the "Kleine Riesen Haus," can help parents find employment opportunities amidst their caregiving responsibilities.
- Donations and community engagement are crucial to providing comprehensive support services for families, bridging the gap between health insurance coverage and the extensive needs of children requiring palliative care in Hesse.
