As a parent of a child with complex disabilities or serious medical issues, you are sometimes faced with extremely difficult and painful decisions. Some of those decisions have to do with how you choose to care for your child and the quality of life they have, especially during the most difficult times and treatments.
There is a new and growing type of medical support program, called palliative care, which can help families during these difficult times. Palliative means to ease suffering, and that’s exactly what these programs do, no matter what your child and family are dealing with.
You might call palliative care a circle of support that lifts some of the burden off of parents and families by addressing pain, mental health, and social needs, and coordinating all the different types of care your child is receiving. A palliative care team is a group of different professionals working together to treat and take care of the patient, while the medical team works to treat the medical issue. Palliative care uses a mix of services to maximize your child’s quality of life and minimize their physical and emotional pain. They do this by sitting with your family, discussing what’s going on, and helping you make decisions that fit your family’s need and beliefs. They suggest services and supports to help your child’s mind, body, and spirit as well as help your family cope with the stress of it all.
“Rather than intervening, we walk the journey with families and meet them where they are. We help them through it, getting over the next hump. Sometimes that means meeting with them every day for weeks and sometimes it means meeting with them once a year.”
Palliative care is for children (or anyone) with a serious or complex disability, illness, or medical condition. It is not the same as end-of-life care, because children’s conditions can be life-threatening or curable, including cancer, serious heart and lung conditions, genetic and neurologic disorders, HIV, extreme prematurity, severe brain injury, and more. Families can have palliative care at the same time they have curative care (medical treatment aimed at curing your child’s condition or prolonging their life).
Palliative care services might look different depending on the child’s age and condition. The program can be helpful for a period of time or for many years. It can start as soon as you get the diagnosis that your child has a complex condition (even before they’re born) – or whenever it’s needed after that. It usually takes place in the hospital or another medical setting. Many health insurance programs cover palliative care services, so you can check with your insurance provider to see if they do.
Parents are an important part of the palliative care team. You and your family are front and center in deciding who needs to be on this care team and what decisions they make. The other people on the team might be doctors, nurses, social workers, child life specialists, massage and other therapists, home health aides, chaplains or spiritual advisors, and even other community professionals.
The whole care team, including your family and child (as they are able) think about what services fit your child and family right now. These might include:
Altogether, these services help with managing difficult and painful symptoms as well as supporting you in making hard decisions, setting goals, and getting everyone who provides care for your child working together. As we mentioned above, the people on the palliative care team are also paying close attention to your needs as a parent and a family coping with a difficult situation. Some services are specifically aimed at helping you with the grief and stress you are probably feeling as you care for your child.
Here are a few basics about palliative care for children:
Today, there are more palliative care programs than ever before, but not in every area. You can ask your doctor or hospital if there is one in your area or might be soon. Palliative care is a central piece of any hospice (end-of-life) care program, but it also stands alone. You might connect with a palliative care program through your child’s doctor or hospital – or you can search online or ask other parents in your area.
If you want to learn more or find a program, here are some other starting points:
Puberty is rough—for those going through it and those who love them and are trying to help. But when boys with disabilities experience puberty, it can look quite different than you might expect.
A family shares how to make moving a bit less stressful for the whole family.