Every Pediatric Hospital Should Offer A Palliative Care Program
When I tell people that I study palliative care for children, I usually hear something like, “You mean taking care of children who die?” It is hard for most people to fathom palliative care for children. The term palliative care often brings to mind images of sick and dying adults.
It IS sad to see any child sick, and it is devastating to see a child die. But what many people may not know is that palliative care is really about making the most of life. Palliative care is as much about supporting life as it is about ensuring the best possible death. So what does palliative care really mean?
The National Hospice and Palliative Care Organization proclaims that palliative carehelps people “facing serious or life-limiting illness to live as fully as possible, surrounded and supported by family and loved ones.” This sentiment is echoed by the World Health Organization’s definition which starts, “Palliative care is an approach that improves the quality of life of patients and their families…”
In my work, palliative care means focusing on relieving the physical, psychological, social and spiritual impact of illness. For a child with cancer, that could mean having a doctor with expertise in controlling pain who prioritizes minimizing her terrible bone pain. Or it could mean having regular home visits from a nurse so that parents of four children can spend more time with their family and less time traveling to and from the hospital. Palliative care provides counseling to the depressed and anxious sibling of a child dependent on a breathing machine. Palliative care acknowledges and supports religious, spiritual, and non-western approaches to enhancing health.
Some people may equate palliative care with dying patients because the terms hospice and palliative care are often used together. These two terms have important differences. Hospice is an insurance-driven term used with people predicted to live less than six months. Palliative care describes a holistic approach to care for anyone with serious illness.
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