I want to make a plug for reading Trisha Ready’s article in The Stranger from last week. It is a brilliant piece of writing about healing from cancer with music, and fighting against the pronouncements of Susan Sontag in her book Illness as Metaphor.
While I have not had cancer, I have read Sontag’s book, and recently, a few others on the topic of Language, Metaphor and Writing about Illness and I think Ready does considerable work in articulating the medical aspects, choices and limitations of allopathic medicine along with the possibilities, and need for, less traditional forms of healing.
I am not ready to post my own essay on the topic of language, illness and healing, as I have it out for consideration of publication, but I hope to be able to offer it soon. In the meantime, read Ms. Ready!.
A friend of mine, Kim Poston Miller, is the mother of two boys who both live with forms of Juvenile Arthritis. This is a similar, but somewhat different disease than Juvenile Myositis, but many of the same medications are used in treatment, steroids and methotrexate to name two. What is even more common are the sort of experiences we go through as parents of children with an inflammatory, autoimmune disease. Kim’s way of coping with her circumstances led her to write a book for parents called Living With Juvenile Arthritis: A Parent’s Guide and to maintain a blog.
She graciously asked me to write a short section for her book and has now included me in her blog. This recent blog post describes how I came to write and publish my newest chapbook, The Moth Eaten World, due out in May, by Finishing Line Press..
In the January 20, 2014 edition of The New Yorker, Dr. Jerome Groopman writes about how we might best care for chronically ill children. He looks at teams of specialists that are trying to address chronically ill kids needs from more than one perspective. This is an issue close to my heart and involves a conversation that I’ve been privileged to be part of at Seattle Children’s Hospital.
I will not summarize this article, it is best to read it, but I will point out a couple of important statements and why they need to be taken to heart by other pediatric care providers and hospitals.
Christina Ulrich, an attending physician at Boston Children’s and Dana Farber says about treating pain; “…I learned you can’t treat a child’s pain effectively without understanding her anxiety and her social situation. It’s not just a matter of writing a prescription.” This is profound. She is talking about trying to understand a child IN CONTEXT, within herself, her family and her cultural background. We all suffer, but HOW we suffer and how we think about that suffering or that pain, can lead us to be treated in various ways. For example, when a child is afraid of needles and needs an infusion, there are a number of ways to approach that. There are numbing creams and sprays to help alleviate the actual sting of the needle, there are Child Life experts who can talk the child (and help the family) through the actual needle insertion. They might also need to learn if that child NEEDS to watch the needle insertion in order to feel some control or whether distracting them and helping them focus on their breathing is better for their anxiety.
That is an example of a mild, but potentially frightening pain moment compared to a cancer patient’s treatment needs. In the latter case there might be others on the team that would help the child and the parents decide the best course of action for both pain and treatments. Here is where my second concern comes into play; the family centered approach to decision making.
Janet Duncan, a nurse practitioner said, “we bring a little bit of a different perspective, because we sit with families, who teach us about how they make decisions. It’s not that there is a right or wrong; it’s really what is the best decision for your family, for your child.” I don’t think I could say this any better. Doctors have medical knowledge but the family knows their child and the child herself might be old enough to express an opinion or need. All of this is important.
This is exactly what the Family Advisory Committee at Seattle Children’s Hospital spends time thinking and talking about to various providers and committees throughout the hospital. All of us are parents and we have had either good experiences of family centered care or bad ones. Likely, both, and we don’t want to repeat the bad ones ever again. More and more children’s hospitals are trying to move to a family centered model but it is still rare to have teams of specialists from various fields consulting on one case. Though potentially more expensive and time consuming initially, it may lead to better outcomes and reduced expenses as families adhere better to treatment regimens and their children feel better cared for.