Here at CPN, we strongly believe that every family caring for a child with serious illness needs pediatric palliative care as part of their care plan (concurrent with curative treatments). Why? Because Palliative Care is really the care that any and all parents would hope to receive for their child and family.
(Illuminating videos about palliative care from a doctor, a social worker, and families who have benefited.)
When your child is diagnosed with a life-limiting illness, everyone in the family is affected. Pediatric palliative care recognizes that caring for a seriously ill child can be overwhelming for the parents and isolating for everyone in the family. While pediatric palliative care cannot change your child’s diagnosis or prognosis, it can provide relief from the symptoms, pain, and psychological and emotional stress of the illness—whatever the diagnosis.
Palliative care is often misunderstood. People associate it with end-of-life care, hospice care, or “giving up” — especially when facing a serious health challenge. But quite the opposite is true: palliative care is appropriate for any stage of illness and it can be delivered along with disease-directed, curative treatments. Its goal is to ensure quality of life for the child and to ensure that families are active decision-makers in the care plan so that medical decisions are patient and family-focused, not disease-driven. Imagine then what an especially powerful role palliative care plays for parents caring for children with life-limiting illness.
Pediatric palliative care is interdisciplinary, involving doctors, nurses and other specialists like child-life specialists, music therapists, massage therapists and psychologists) who work together with a child’s lead doctors as an extra layer of support.
Ideally, palliative care begins at the time of diagnosis, so that families have this extra layer of support all the way along the continuum of their child’s care. Grief may begin at the time of diagnosis, when the family learns that their child is sick and that the future is not as they expected. When this grief and shift in expectations are addressed, they can be managed in a way that helps the entire family to begin coping with the new reality of their life.
Pediatric palliative care providers can help in the following ways:
(1) they can help the child by relieving the child’s disease symptoms, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping.
(2) they can support the parents and child by improving the communication and coordination of care between the medical team and the parents. When caring for pediatric patients, doctors and parents are often faced with difficult decisions around the benefits versus burdens of medical technology and the impacts on the child’s quality of life. With the close communication that palliative care provides, families are better able to make choices that are in line with their values, traditions and culture. This improves the well-being of the entire family and promotes emotional and spiritual healing even as the disease persists.
Palliative care specialists also help parents talk to their affected child and other children about illness.They can provide resources to other members of the family’s community – such as teachers and friends – so that they are informed of the family’s needs and situation.
In short, pediatric palliative care providers help the child and the family have the physical, emotional, and mental strength to carry on with daily life and provide the best quality-of-life for the child who is sick and the rest of the family.
Where Your Child Can Receive Pediatric Palliative Care
Ideally, pediatric palliative care begins with the child and family’s primary care pediatrician, who usually knows the child and family best. As the American Academy of Pediatrics’ Section on Hospice and Palliative Medicine notes in its mission statement: “every pediatrician, in partnership with other healthcare providers and supporters, is capable of addressing the needs of children with life-limiting and/or life-threatening conditions, and their families, through personal knowledge and skill or by providing proper referral, treatment, and follow up.”
Palliative Care in the Hospital
Children being treated for serious illness typically also require the care of palliative care specialists. Ideally, the pediatrician and/or the disease specialist working with the family (e.g. oncologist, neurologist, endocrinologist, cardiologist, etc) refer the family to the pediatric palliative care team who will work in tandem with the medicalists treating the disease. Families can also ask for a palliative care consult themselves. Asking for a palliative care consultation does not mean that your established team of specialists will no longer be part of your child’s care. Palliative care specialists will partner with you and your child’s existing team.
Families often first meet the pediatric palliative care team at the hospital or clinic appointment. However, many teams will continue to offer care and support via telephone and home visits once the child is at home. Follow-up visits can also take place in either of these locations.
Palliative Care at Home
Your child’s hospital team may or may not be able to provide home visits. Some hospital teams have a standing relationship with agencies that provide in home services. In some states, such as Massachusetts, there is a state agency network of home services that may provide services separate from the hospital team. These home-based programs may provide an additional layer of medical support, or focus more on psychosocial supports. The home-based team is also interdisciplinary, and it maymay include a doctor, nurse, chaplain, and social worker; some teams may also be able to provide other therapies such as child life, massage, music , pet or counseling therapies.for the affected child as well as othe family members.
Ask for Palliative Care
If you think palliative care could help your child, your family or you, ask for it now. Speak to your child’s pediatrician or specialist about adding palliative care to your child’s treatment team. Ask the provider to make a referral for palliative care services.
To find a hospital in your area that offers a palliative care program, connect to the Palliative Care Provider Directory of Hospitals to search by state and city. The hospital can then refer you to those programs in their area that provide in-home palliative care for children.