Just after writing my last post I was reading the August 2, 2010 issue of the New Yorker magazine and came across a wonderful article by Dr. Atul Gawande.  It is a far ranging piece about the concerns and costs of end of life care, about the importance and difficulty doctors have in discussing with patients what they want their lives to be like as they struggle with end of life, healthcare, and about the patient and their caretaker’s needs around this issue.

I won’t repeat in detail the complexities he describes but I do want to talk again about the importance of words.

Dr. Gawande found that Aetna Insurance had done a remarkable study comparing the costs of hospice care to ‘do everything possible in the hospital ‘ care with dying patients. They found that not only were costs lower for patients in hospice but “these patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression.  In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.” (my emphasis)

These discussions are never easy. Especially for doctors who are trained to do everything to intervene and are actually paid for doing rather than, not doing, something medically.  (That is another discussion.) But Dr. Gawande went on to interview “Dr. Susan Block, a palliative care specialist, who is a recognized pioneer in training doctors and others in managing end-of-life issues with patients and their families.”

In her words. “One basic mistake is conceptual. For doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. They focus on laying out the facts and the options. But that’s a mistake.”

“A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” Gawande again, “No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.”

“There is no single way to take people with terminal illness through the process, but, according to Block, there are some rules. You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them the best chance of achieving it. This requires as much listening as talking. If you are talking more than half of the time, Block says, you’re talking too much.” (again, my emphasis)

And then Gawande says,  “The words you use matter.” While this article focuses mainly on the patient it also touches on the caretakers of the terminally ill or dying person. Not only is the discussion of what people want at the end of life relevant to the patient, but the talking, and listening that family members do also helps them come to terms with the patient’s illness and wishes and in the long run, decreases their sense of guilt and depression after their loved one has died.

Being the mother of a child with a chronic illness, my work and observations are often geared towards caretakers now.  And it is always confirming to me to see that words matter, no matter which side of the equation you are on.

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I had the honor of speaking to and leading a group of parents whose kids have chronic illness, mostly Juvenile Rheumatoid Arthritis (JRA), this past weekend.  It was at a Family Camp put on by the Pacific Northwest Arthritis Foundation. Though my daughter has a different rheumatic-like disease, my family attended it 3 years ago when our daughter was very ill and really needed to be with other kids like her. My husband and I found a lot of support from other parents but also from one or two terrific speakers and group leaders.

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