A common myth about hospice is that it is only for elderly patients, but hospice is for anyone, of any age, who is dealing with life-limiting illness. At Hospice of the Northwest, we proudly serve pediatric patients and their loved ones. Pediatric hospice care is a unique and specialized service that many other hospice providers are unable to offer.
Pediatric hospice care can be difficult to talk about because it involves children who face serious, life-threatening challenges. It’s important to acknowledge that many of our community members utilize these services and to understand how it benefits both the patient and the family.
The Key Difference Between Traditional and Pediatric Hospice Care
Pediatric patients qualify for hospice care the same way as adult patients do: a physician must certify the child has six months or less to live if the disease/condition were to take its natural course. However, unlike hospice care for adults, pediatric hospice care can have dual goals: the continuation of curative or life-prolonging treatment and improving quality of life through pain and symptom management.
Adult hospice patients decide to forgo curative or life-prolonging treatments, and instead, choose to focus on comfort and quality of life. This includes pain and symptom management that neither hastens death nor prolongs life. Pediatric hospice care is different. Most patients under the age of 21 are eligible to receive concurrent care: they can continue to seek curative or life-prolonging treatment AND utilize hospice services simultaneously.
Many people still believe a child must be very close to death to receive hospice care, or by choosing hospice care, the family has given up hope. Neither is true! In 2010, with the passage of the Patient Protection and Affordable Care Act (ACA), pediatric patients and their loved ones were given the option to continue seeking treatment, while benefiting from the added support palliative and hospice care provides. This applies to patients covered by Medicaid, as well as some private insurance companies.
Benefits of Pediatric Hospice Care
Concurrent care is extremely beneficial for the patient, their parents, siblings and the other significant people in the child’s life.
One significant advantage of concurrent care is that pediatric patients and their families can benefit from hospice’s holistic approach to care. While medical treatment the patient receives primarily focuses on the child’s physical needs, hospice care helps to address the psychological, social, practical and spiritual or existential needs of the child and their loved ones. This greatly improves quality of life and well-being for the entire family.
Diseases in children can be very unpredictable, especially when they are also receiving curative treatment. This unpredictability means treatment plans developed by the care team may need more frequent adjustment, communication with the family and coordination with other care providers, including those as far away as Seattle Children’s Hospital. Hospice of the Northwest coordinates this care, relieving stress for the family and ensuring the best possible care for the child.
Another benefit of concurrent care is that bereavement services are offered to the patient and family much earlier in the process, usually upon admission. Bereavement services help the entire family cope with loss and anticipatory grief. This includes providing age-appropriate support to the child’s siblings and educating family members about child grief and supportive strategies for bereaved children.
Pediatric patients may also take advantage of the Integrative Services offered at Hospice of the Northwest. This may include massage therapy, pet visits, arts and crafts, and more. All of these services are offered free of charge thanks to generous donors who support the Hospice of the Northwest Foundation.
Finding Hope in Hospice Care
Because pediatric patients are able to continue life-extending treatment, they are often on hospice care longer than many adult patients. So long as the child medically qualifies for hospice care, they can continue to benefit from the extra layers of support it provides for as long as needed.
This allows the child and their family to focus on what is most important to them — and to find hope during the most difficult time in their lives. The definition of hope may change as the child receives curative and palliative care, but at Hospice of the Northwest, we are here to walk with families on that journey wherever it takes them.