The Basics

Q: What does “Pediatric Palliative Care” mean?
A: The goal of palliative care is to optimize quality of life for children with life-threatening illnesses and their families by anticipating, preventing, and treating suffering in all its forms. Delivered throughout the continuum of illness, palliative care addresses physical, intellectual, emotional, social and spiritual needs.

Palliative care can be provided in the hospital staff, as well as by hospice in the home or a community hospice facility.

Q: What is Pediatric Hospice Care – does it mean giving up hope for our child’s recovery?
A: Palliative care programs and children’s hospice work closely together, to ensure that your child and family receive “seamless” care. Depending on where you live, your area hospice may provide care in the home and/or in a community hospice facility.

The goals of hospice are to keep the patient as comfortable as possible by relieving pain and other symptoms; to prepare for a death that follows the wishes and needs of the patient; and to reassure both the patient and family members by helping them understand and manage what is happening.

By enrolling in hospice, you do not have to give up curative treatment options for your child. This is called “concurrent care”.

A benefit of hospice is respite. Respite is a break from the constant challenge of care giving. Brief periods of respite can take place in the patients home provided by volunteers who may help with light chores or errands. They may also care for healthy siblings who also need attention, although they may not be able to care for the patient.

Out of home respite may be provided at a community hospice facility. Your home hospice can provide more information about this.

Q: Is it OK to ask the doctor or nurse (or anyone else who is caring for my child) to explain something to me?
A: Absolutely – even if you are asking the same question many times. You are facing a new and difficult experience. It is your right to know and understand as much as possible about your child’s condition and treatment.

Helpful Hint: Get a small notebook for questions , so that when the doctor or nurse appears, you will not forget to ask them for an answer. Then write down the answer so you won’t forget it.

Q: Will the doctors or nurses ask for my opinion about my child and his care? I don’t know much medically, but I do know a lot about my own child.
A: Of course! However if you have concerns, let any member of your medical team know.

Helpful Hint: If you want assistance with this, your child’s care coordinator, nurse or social worker may be able to help.

Q: What is special about children’s hospice?
A: Children have both developmental and medical needs that are different from those of adults. The staff of a children’s hospice program is sensitive to these needs and offers care that is age appropriate and family-focused.

Helpful Hint: When you are choosing a hospice care provider, be sure to ask if there are professionals with pediatric experience.

Q: Is it possible for sisters and brothers, as well as grandparents and special friends, to spend time with our child?
A: One of the great advantages of hospice care is that families are supported if they decide to care for their child in the home or in a community hospice facility. Siblings, grandparents and friends who can offer love and support to your child are most welcome!

If you are receiving care in the hospital be sure to ask about visitors. Hospitals often only allow visitors during specific times of the day. The number of visitors can also be limited, even at end-of-life.

Helpful Hint: If it is important to you to have family and friends at your child’s bedside, be sure to ask your hospital about any allowances that can or cannot be made at the end-of-life.

Q: What if the people in our family disagree about the right thing to do?
A: This is a very common thing in families. Sometimes you can sort out these differences yourselves, but other times, you may need to ask a social worker, chaplain or other person you trust to give you
some help or advice. Don’t be afraid to ask for help.

Q: How can our family afford to pay for this kind of care?
A: Finances are certainly one of the key concerns that families face when a child is seriously ill, but most insurance plans, including Medicaid and Medicare, will pay for at least part of your child’s hospice care. The social worker can help you figure this out.


Source: Pediatric Palliative Care Coalition