The conversation

For all the benefits of evidence based conventional medicine, a point comes when science does not have all the answers, and when we need to acknowledge that fact to our patients and their families.

For some "the conversation" is dreaded, because hope is equated to science. But physicians need a broader education, and a realization that most people have Hope that is based upon a sense of being connected, and cared about, and that runs on faith.

Dr. Lucille Marchand, a mentor to family physicians and palliative physicians at the University of Wisconsin School of Medicine, phrased it this way in the Summer 2010 issue of the AAHPM Bulletin, "Hope is not an outcome, it is the process of living fully."

As a prelude to the conversation I always sit down, and I tend to take off the "white coat." I convey as much as I can, simply by not being rushed, that as a fellow human being "I care."

I ask more questions and do more listening - and very often I find that patients gift me with surprising wisdom.

In any case - "the conversation" is not always so difficult, and this weekend - I had a nicer one.

Carl is an 84 year old man who entered a hospital 10 months ago, he later said he "didn't feel well so he went to the hospital." Nothing was found (as so often happens since nearly 50% of patients with small strokes have CT scans that do not show the strokes, especially in the first ew days). He was agitated and hard to manage and was felt to have irreversible dementia and was placed on a high dose of an "atypical anti-psychotic" class medication. For patients with agitated dementia, it remains a serious problem, since these medications are not indicated for long term usage, but there are few options pharmacologically for safely and effectively managing agitated dementia patients (why not use non-pharmacologic methods one might well ask - a very good question)

I decided to slowly take the risk of tapering Carl off his medication. Rapid dose reductions can cause problems as well. For months Carl appeared as he had been labeled by the hospital - simply demented and near the end of life, listless, confused, mumbling and totally dependent. Slowly he began to be a little more alert, but as we continued to reduce the medication - a startling event happened this weekend, Carl really woke up!

He wheeled his wheelchair over to me as I came onto his unit, and said to me, "your the doctor aren't you. What day is this? What month is this? How long have I been asleep? Where is my family and do they know where I am?"

I sat down and talked with Carl for a long time, and explained what had happened, and he told me about what his life used to be like, what work he had done (a very responsible job).

And then I had to have "the conversation." I called his family. Only this time - it was a "good conversation." "You may have noticed a change in your dad, " I said." "Well - we noticed something last week - my daughter wouldn't enjoy visiting her grandpa, but last weekend he was more alert." And I explained how I had been slowly tapering him off his medication - "I can't guarantee how long this will be for," I had to add. "But it would be great if you could come over today, he is very alert and really wants to see you."

The thing is - with an approach of palliative care, "the conversation" is often one filled with hope. We accept we cannot cure yet we continue to care, and we give hope simply by connecting and caring. And sometimes, when conventional treatments cannot actually cure, patients are better off without them - sometimes using futile medications for "hope" doesn't make sense scientifically or humanistically.

Dr Lucille Marchand wrote in her article that physicians "don't take hope way by running out of conventional, curative treatment options; rather, we discourage hopefulness by not being present and listening to what our patients truly need from us."

I agree. And the fact that within conventional medicine, there is increasing recognition of the import role a physician can play in nurturing hope elevates the spirit. Palliative care is a specialty that brings conventional and complementary methods together by its very essence, and makes a more human model. It makes "the conversation" a little easier. It enriches all our lives.