- By Laurie Watanabe
- May 01, 2015
In prepping for this issue’s feature story on palliative care, I read a story in the January 2014 issue of New Yorker. In his story “Lives Less Ordinary,” author Jeremy Groopman explored the relatively new specialty of pediatric palliative care and the difference it can make for children with extremely complex medical conditions.
Palliative care is a new topic for Mobility Management, so I was interested to read how palliative care clinicians work with specialists in other fields — including pediatrics, neurology, gastroenterology, oncology, nephrology, cardiology, ophthalmology, immunology and genetics, in the case of one of the patients in the story — but on behalf of the child and her family. The job of the palliative care team is to consider what’s best for the whole existence of the child, rather than just what is clinically recommended.
Groopman quoted an exceedingly bright 11-year-old named Gwen, who has a mitochondrial disorder that wreaks havoc on her organs, particularly her liver and her digestive system. Of her palliative care team, Gwen said, “They make an effort to say, ‘Can I sit down and watch 10 minutes of this show with you? Can I talk to you?’ It’s not, ‘Let me just stand over you and prescribe you some pills.’”
As I continued reading, I kept getting feelings of déjà vu:
One of Gwen’s doctors noted, “But there’s not much about Gwen that has ever been by the books.”
Another palliative care physician said, “I learned that you can’t treat a child’s pain effectively without understanding her anxiety and her social situation.”
Said another: “One easy change… would be to improve the kinds of questions that pediatricians ask families upon first meeting them. … Typically, a doctor’s first questions are narrowly focused on the child’s illness; instead, [a palliative care team] recommends asking about the child as a person — how he or she contributes to the family, and how the illness has affected them — as a way of beginning to gauge and manage expectations.”
Most of the time, seating & wheeled mobility professionals focus on functional solutions that work for clients for the longer term. ATPs and clinicians are concerned about a system’s growability and adjustability because they’re anticipating changes in a client’s size or abilities.
Sometimes, the longer term includes disease progression to the point that a client’s needs change drastically, and he or she needs palliative and/or hospice care.
But either way, I realized that you ask palliative types of questions from the very start. Isn’t understanding the client’s goals one of the cardinal rules of successful seating prescription and mobility provision?
Don’t you ask what activities are critical to a client’s overall well-being? Don’t you try to build systems that aren’t only clinically effective, but also take into account that a dad wants to propel efficiently to keep up with his kids, or a kindergartner wants to drive her power chair on the grass at the park? Don’t you plan for a power chair to support augmentative communications devices and environmental controls because you know how spiritually important they can be? Isn’t one of your favorite benefits of seat elevation the fact that it enables your clients to look their families in the eye?
So maybe physicians of all specialties can learn something valuable from you: that patients are so much more than their medical conditions, their life expectancies and the projected paths of their illnesses. You’ve known that all along.
This article originally appeared in the May 2015 issue of Mobility Management.
Laurie Watanabe is the editor of Mobility Management. She can be reached at firstname.lastname@example.org.