By far this has to be the toughest article I’ve researched to date, not only in terms of trying to find resources to provide the information that I feel would be most helpful, but also in terms of the emotional reality of the need for such services. And yet I am (and probably many of you are as well) aware of children who are suffering from a life-threatening condition or illness thanks to sites like CaringBridge and Carepages.com, which offer parents an opportunity to support each other.
The Need for Palliative Care for Children and their Families
According to a 2004 article published in the New England Journal of Medicine, “approximately 50,000 die and 500,000 children cope with life-threatening conditions” in the United States and those numbers are in the millions world wide.
With these numbers, it is clear that these children and their families face unique and stressful medical conditions that require palliative support services.
“Pediatric Palliative Care is an active and total approach to care for children with life-threatening conditions, from the point of diagnosis, through the ups and downs of active treatment, and including end of life care when necessary. Care focuses on comfort, quality of life, maximizing growth and development to the degree the child is able, and support for the child in the context of family-centered care. Pediatric palliative care involves a coordinated, interdisciplinary approach that follows the child and family across settings, and throughout their illness or disability” (National Network for Pediatric Palliative Care).
Pediatric Palliative Care: A Valuable Resource
It is a myth that palliative care is only for the dying. The Royal Children’s Hospital Melbourne (Australia) asserts that “[p]alliative care has often been associated with ‘giving up’ in the minds of parents and health professionals, but this need not be the case. Palliative care is not about ‘doing nothing’ and should be presented as a very active approach to symptom control and family support.”
Regardless of the age of the patient, the particular medical condition or illness, palliative care is meant to help address the pain and symptom management needs of the patient and to provide practical, emotional and spiritual support to both patients and their families. Obviously, when a child is involved there are deeper emotional issues and involvement of more family members than often with an adult. This situation presents a unique challenge to medical care professionals in ensuring that every aspect of the patient’s treatment -- including the needs of the family -- is met.
Hints for Coping for Parents
The following list is taken from The Royal Children’s Hospital Melbourne website, cited below.
• Do what is right and/or comfortable for you, your child and your family not what is expected of you.
• Continue to ask the questions that you need to for further understanding and clarification. Remember that no question is too small or too silly to be asked.
• It is OK for you to want to know everything or only some things at a time.
• Let your treating health care team know when you are ready to talk about your child’s illness progression, symptoms, timing of death, etc.
• Seek a second opinion if you want to.
• Share the care and trust others to help.
• Look after yourself; build some of your ‘own time’ into the daily routine.
• As a family, try and openly discuss how you are going to manage the many changes.
• Share your feelings, thoughts, fears, concerns, hopes and expectations with a trusted person.
• If you find it hard to talk about things, consider keeping a diary of your thoughts and feelings.
• Create memories of your child. This can be achieved through special times together, photos, videos, etc.
• We all need the help and support of other people at some time in our lives – you will be able to help someone else at another time. It is your turn now to have support.
Sources:
“Pediatric Palliative Care” by Bruce P. Himelstein, M.D., Joanne M. Hilden, M.D., Ann Morstad Boldt, M.S., and David Weissman, M.D. N Engl J Med 2004; 350:1752-1762; April 22, 2004 accessed through http://www.nejm.org/doi/full/10.1056/NEJMra030334 on August 25, 2011
National Network for Pediatric Palliative Care http://www.network4pedspallcare.org/faqs
American Academy of Pediatrics
http://www.aap.org/sections/palliative
The Royal Children’s Hospital Melbourne (Australia)
http://www.rch.org.au/rch_palliative/families/index.cfm?doc_id=1651#Top
Reviewed August 25, 2011
by Maryann Gromisch
Edited by Jody Smith