Is Hospice Right for Your Child?
Hospice care focuses on patients with a terminal illness, but it’s generally not a “place.” While there are some freestanding hospice facilities, it’s actually a philosophy or system of care that aims to promote quality of life, support those who are grieving, and foster choice in end-of-life decision-making. This type of care prioritizes comfort by reducing pain and suffering.
While seniors receive most of the hospice care in the U.S., a rising number of hospice providers have been focusing on children with terminal illnesses. The most recent figures reported by the National Hospice & Palliative Care Organization (NHPCO) show that in 2018 just 16.3 percent of patients were younger than 65, with the majority 85 years of age or older. Medicare coverage for hospice is limited to patients with a six-month prognosis, but that can be difficult to determine accurately and even more so with children as they usually have healthier organ systems. That can also make deciding whether or not it’s time for hospice even more challenging.
What Pediatric Hospice Is
Pediatric hospice, or children’s hospice, is generally defined as hospice services provided to those who are 21 years of age and younger. It can begin before a child is born and may last beyond 21, depending on the particular symptoms. The services differ from general hospice as children can also receive curative treatments while in hospice. It also focuses more on the family rather than being patient-centric. A team of providers works with the child, the child’s family, and other healthcare professionals to achieve seamless care for all aspects, including spiritual, psycho-social, and physical. Parents work with physicians in determining the plan of care, taking the lead while also considering any siblings and other relatives.
How Pediatric Hospice Can Help
A team of hospice professionals helps in many different ways, from managing pain and other symptoms for the child to ensuring parents and other family members have some downtime and providing talk therapy. The services can be provided wherever the patient is, in the hospital or in the home. It allows the family to focus on the child without undermining care for others in the family. If a medical emergency arises, a hospice team member can be sent out immediately along with other appropriate services.
Additionally, every need related to the terminal diagnosis, from supplies and equipment to medication, can be delivered to wherever the patient is at no cost, paid for by private insurance, Medicaid, or other types of reimbursement methods.
What Hospice Isn’t
Parents are sometimes reluctant to accept hospice services for their child with the impression that it means giving up hope. Even some healthcare providers hesitate to recommend it as they don’t want to give up on finding a cure and doing everything possible to help a child live as long as they can. But hospice isn’t about giving up hope. It aims to provide both patients and caregivers with the best possible quality of life. While trying to decide if hospice is right for your child is a difficult decision, seeking services earlier in the process allows the child and their family to receive the maximum level of available assistance and support.