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  • BIOETHICS FORUM ESSAY

Of Policy and Pancakes

Pediatric palliative care is a tough subject. We like the idea of making sure that someone is paying attention to the suffering of very sick kids. We hate the idea that anyone has to do this, that any child would endure life-threatening disease or chronic, progressive conditions so early in life. While such illnesses are typically described as “catastrophic,” this adjective barely conveys the impact of a child’s diagnosis on every member of this child’s family. When we picture “family-centered care,” we picture the patient as an adult, because most people with life-threatening or chronic, progressive health problems are adults. But imagine that the patient is five years old. And has three siblings. And has parents who love their children, who will do anything for their children, but whose marriage was shaky before this catastrophe hit.

How can we care for this family? And, because this is the U.S. health care system, we always have to ask: who will pay for the care we provide?

In early December 2008, California joined two other states, Colorado and Florida, that have secured federal waivers from the Centers for Medicare & Medicaid Services (CMS) to allow them to tap the Medicaid hospice benefit, administered through the states, to cover comprehensive pediatric palliative care. According to the Children’s Hospice and Palliative Care Coalition, which has worked for seven years to develop California’s demonstration program and to secure the waiver, the state’s MediCal program will now cover the full range of hospice services to children under 21 with certain medical conditions, and to these children’s families, without requiring families to opt “for” hospice – and forgo therapeutic treatment – and without requiring that the child have a prognosis of six months to live.

These initiatives recognize the special structural and psychological challenges of delivering comprehensive palliative care – “upstream hospice” – when the patient is a child. It may be impossible for this child’s parents to make a decision to end therapeutic treatment, so palliative care to minimize suffering and improve quality of life must be provided concurrently. As therapeutic treatment may require hospitalization, so hospice care providers who are accustomed to working with patients and families at home or in hospice facilities must figure out how to maintain continuity of care across different settings. And this may go on indefinitely.

The organization that pushed for the waiver in California has done the math: a pilot version of the demonstration project determined that giving families of sick children full access to hospice-level palliative care services while the children were undergoing therapeutic treatments saves taxpayer dollars by allowing more care to be provided at home, minimizing ER visits to treat pain and symptoms.

There’s something else comprehensive palliative care can do for sick children and their families. As Cathie Stivers, a pediatric chaplain who responded to a column I wrote about the chaplain’s role in pediatric palliative care, told me,these families simply want some normalcy in their lives, to help alleviate the chaos and relentlessness of having a child with life-limiting (and often life-threatening) disabilities. Therefore, a HUGE part of my job focuses on hospitality – caring for the families with the same intensity and compassion that their children are cared for.”

I have a vision of Cathie Stivers as an expert birthday-party planner. Her description of families’ craving for “normalcy” and how she feeds that craving through “hospitality” reminded me of something journalist Marjorie Williams wrote about in her extraordinary memoir, “Hit by Lightning,” about being a parent who has a life-threatening illness: “What you do, if you have little kids, is lead as normal a life as possible, only with more pancakes.”

Published on: January 9, 2009
Published in: Children and Families, Chronic Conditions and End of Life Care, Health Care Reform & Policy

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