Tonight's picture was taken in January of 2006. Mattie was three years old and was sitting on this cute wooden rocking duck. It turns out this duck was Peter's childhood toy. Mattie liked the notion that he was playing with something that once belonged to his dad. So he was smiling with pride!
Quote of the day: Some people mistakenly believe that palliative care is only for patients who are incurably ill. The goal of palliative care is to provide relief from symptoms, and stress of a serious illness-whatever the diagnosis. ~ Raymond Young
About two weeks ago, a psychologist from Children's National Medical Center (Washington, DC) reached out to me. I happen to know her as she is one of the authors of the Psychosocial Standards of Care. I can't tell you how many wonderful professionals we have met over the years, as the Standards were being developed. This particular psychologist is competent, lovely and compassionate. It turns out she has been asked to write a palliative care chapter for a pediatric cancer textbook. She was hoping to include our story within her chapter and she asked me to write a 500 word submission that highlights Mattie's diagnosis, his experiences, and whether we had access to palliative care. In addition, I was asked to make a statement about what I believe quality palliative care looks like, who is a palliative care provider and whether this care should be offered to both children and families.
This was actually a difficult assignment for me because of the word count. It is hard to write about Mattie and our experiences and be succinct. Not my strong suit! That said, you maybe asking yourself, what is palliative care?
Palliative care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
In a nutshell, Mattie wasn't offered palliative care. I truly believe many hospitals and families still equate palliative care with end of life care. Therefore because the word is threatening, it isn't used at all. Which is unfortunate, because anyone with an illness should have access to palliative care right from the beginning of treatment. Palliative care helps manage pain, other symptoms and provides services to enhance quality of life. Certainly all patients want this type of support regardless of their medical prognosis.
I found this slide to show you the difference between palliative and end of life care. Mattie's treatment was intense and produced many physical and psychosocial impairments. I think if we had a palliative care team assigned to us during the beginning of our journey, it is possible that Mattie's pain, social isolation, and fear would have been better managed. 
Here are the benefits of palliative care according to the International Children's Palliative Care Network:
1. A child's quality of life is vastly improved when the symptoms of their illness are well managed. This may require opioids.
2. Children's palliative care is specifically tailored to the unique physical, psychosocial, cognitive, and spiritual development of each child.
3. Age appropriate, sensitive but honest communication with children is a cornerstone of children's palliative care.
4. Palliative care is best when provided by a coordinated and multi-professional team, working together for the best interests of the child and family.
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