Learnings from Pediatric Palliative Care: Life Legacy Questions

At our quarterly Partners to Improve End-of-Life Care meeting this month, I learned about the palliative care and hospice program available for children in our community. Called "Little Stars", it serves children with life-threatening illnesses, focusing on care that enhances quality of life for the child and their family from the point of diagnosis through bereavement.

Like palliative care and hospice for adults, pediatric palliative care is delivered by an interdisciplinary team that addresses the physical, emotional, social, cultural, and spiritual healing of the child. It can be provided concurrent with life-prolonging care or as a main focus of care -- neither hastening nor postponing death. This type of care assists the child and family in making decisions about care during whatever remaining time they may have.

One of the handouts provided by the presenter offered a list of "questions to ask children and families to elicit palliative care goals" (from The Hospice of Florida Suncoast). Among the 20 questions were several that I thought were appropriate for use in creating an ethical or spiritual will (some of which I've edited slightly):

• What are the most important relationships in your life?
• What is most important to your family?
• What are things that bring you joy and comfort?
• What are you proud of? What are your greatest achievements?
• What do you want to accomplish or do?
  
• What activities such as music, art, reading, massage, or touch provide peace or comfort to you?
  
• What do you wish you could still do?
• What spiritual or religious practices bring you comfort?
• What are you hopeful about?
• What are your concerns for the future?
• How and where do you want to live for the rest of your life?
• Is spiritual peace important to you? What would help you achieve spiritual peace?

The remaining questions in the palliative care assessment focus primarily on issues about a child's illness -- their knowledge about it, treatments, pain control, and other concerns they may have.

While hospice care is covered by Medicare and most other insurance today, unfortunately, palliative care for both children and adults remains mostly "not covered" by insurers in the U.S. Some states have made progress in getting palliative care coverage for people but funding of these vital health care programs remain unresolved.

For more information on "Palliative Care for Children" an abstract and article is available from the journal, Pediatrics. My hope is that palliative care will become an essential (and funded!) part of our health care system in the future.

The Way I See It # 83: A Woman's Truth

The Oregonian had a front page story this week (February 28, 2007) that featured the wisdom of a 38-year old woman -- Tiana Tozer -- who wrote the following words in response to how people look at her in her wheelchair.

The Way I See It # 83

They told you that beauty is in the
eye of the beholder. What they
failed to tell you is that it is best
seen with the eyes closed. What
you look like isn't important. What
is important is who you are inside
and the choices you are making in
your life.

Her words appear on the side of a Starbucks coffee cup! Tom Hallman Jr., the reporter who wrote the story about Tiana began the article by saying, "A girl raised in a culture that idolizes Britney, Paris and Lindsay wouldn't understand the quote. Sure, it's a bit cliche, a cousin to an old chestnut that everyone spouts but few girls believe. But if a girl's lucky, a woman will explain the truth behind the 51 words on the side of the cardboard coffee cup."

Great message. Great story (sorry I couldn't find a link to it for you). What it says to me about life legacies is summed up in Tiana's truth -- "what is important is who you are inside and the choices you are making in your life." I hope that is a message that my granddaughter, grandson, and sons will take into their hearts ... and live throughout their lives.