What does “Pediatric Palliative Care” mean?

Pediatric palliative care, often called “supportive care” has different meanings to different people and institutions. Quality of living and control of pain are generally top priorities. Ideally, it means comprehensive, family-centered, compassionate care for a seriously ill child and his (her) family from the moment of diagnosis to a cure, or to end-of life, if a cure cannot be found.

It is a team or interdisciplinary effort, with a care coordinator who makes sure the family is included. Physician, nurse, social worker, spiritual leader, grief counselor, pharmacist, volunteer and family members are examples of people who work together to provide care, pain management and bereavement support to ensure the best possible quality of life for the child and for everyone involved. There is a growing awareness around the country of the importance of this kind of care for all children and their families. Programs are being launched, education is being promoted, research is being done and state and national and international organizations are working hard to see that newly enacted policies will enable the process.

What is Pediatric Hospice Care – does it mean giving up hope for our child’s recovery?

With children, one does not have to give up hope for a cure. Children’s bodies are strong and resilient – sometimes, in spite of serious injury or illness, medical surprises, even miracles, do occur. Children’s hospice provides the kind of comprehensive palliative care that is described above, from the time of diagnosis through to a cure, or to end-of-life, if a cure is not found. Sometimes families, medical professionals and patients themselves, if old enough, decide that the time has come to let go and allow death to come, rather than trying additional treatments that could bring about discomfort, pain or distress.

Palliative care programs and children’s hospice often work closely together, assuring that a child and his (her) family receive personalized, comprehensive care. Hospice sometimes allows a child to be home with his siblings and extended family instead of being a patient at the hospital. Every attempt is made to provide respite for the family, a break from the constant challenge of care giving. Volunteers can help with light chores or errands, work with healthy siblings who also need attention and perform various other tasks as identified by the caregivers and child.

Is it OK to ask the doctor or nurse (or anyone else who is caring for my child) to explain something to me?

Absolutely – even if you are asking the same question many times. You are facing a totally new kind of experience. Often you are too tired or too frightened to understand what you’ve been told. The hospital staff will be using words and abbreviations that are unfamiliar to you, sometimes not even in your own language. (In this case, ask if it is possible to have someone help you with translation.) 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 or a  PPCC Care Plan Book you can carry with you at all times. Write down the questions you have, so that when the doctor or nurse appears, you will not forget to ask him or her for an answer. Then write down the answer so you won’t forget it.

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.

In the best of all worlds, the doctors and other professionals who care for your child will certainly want to and should include you in discussions and decisions about your child’s care. Though they care about you and your child, sometimes they are too busy to take the time and effort to make you feel part of what’s going on. If you are troubled by this, let them know, as clearly and kindly as possible, that you have a real need to be part of the decision making.

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

Can Pediatric Palliative Care Coalition give our family direct help?

No, we are not able to offer direct help. We can help you by giving you information that we hope is up-to-date, honest and easy to understand about where to turn for a specific kind of help. Many of the professional caregivers and support organizations (links) we list in this web site are able to help you directly. We enlist volunteers who train and then serve with these agencies.

What is special about pediatric/children’s hospice?

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 on the interdisciplinary team.

Is it possible for sisters and brothers, as well as grandparents and special friends, to spend time with our child? They want to be included and we think it would help.

One of the great advantages of hospice care is that when it is medically feasible, parents are encouraged to bring their child home to be with family in a familiar and comfortable setting. Siblings, grandparents and friends who can offer love and support to your child and respite to you become important members of the care giving team. Because good palliative care in hospitals is also family-centered, caregivers will encourage whole family participation as much as possible. Often a playroom for younger siblings or an activities area for older siblings is provided by the hospital for times when parents want or need to have their other children with them.

Helpful Hint: Ask if the hospital or hospice has volunteers who are trained to help care for siblings who themselves are needing a bit of attention and love.

What if the people in our family disagree about the right thing to do?

This is a very common in families. Each family member has feelings, opinions and knowledge that will make you come to different conclusions about the advice the pediatrician or specialist is giving you. You’re also under enormous stress. 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 seek help.

How can our family afford to pay for this kind of care?

Finances are certainly one of the key concerns that families face when a child is seriously ill, but never fail to take your child for emergency or ongoing care because of fear that you cannot pay for it. Often special funds have been created to help – few children’s or general hospitals will turn away a child in need. Most insurance plans, including Medicaid and Medicare, will pay for at least part of your child’s care. The hospital’s social worker is there to help you.

Helpful Hint: Even if you have not been a regular participant in a faith community, share your need with a priest, minister, rabbi, etc. of your faith. Often they are very ready to offer assistance when made aware of a specific need.

I am a bereaved parent and I would like to volunteer my time to help others whose children have life-threatening illnesses. Where can I turn?

Many of the “links” that are listed as supportive or bereavement resources would welcome your participation in their volunteer training and programs. It is usually possible for you to find the specific kind of work – office, respite, bereavement, direct patient and family care – that best suits your interest, skills and time commitment. Many of the most wonderful programs in hospice and palliative care as well as in supportive services have been launched by parents who have lost a child or whose child has been seriously ill.

384 Fox Chapel Road, Pittsburgh, PA 15238 | Contact Betsy Hawley at: betsy@ppcc-pa.org

PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.

The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization.  Donations are tax-deductible according to the IRS’s rules and regulations.  The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.