Someone to guide us

“Not only is there no God, but try getting a plumber on weekends.” –Woody Allen

This gag would still be funny, and possibly more poignant, by substituting the phrase, “try finding a good oncologist when you need one.” I have no doubt that God exists and that he’s actively involved in the world, but I understand why some people come to doubt that proposition. If you have a gusher under the sink and the only tool in the house is a beer bottle opener, or your melanoma recurs after six months of blissful remission, you need professional guidance—pronto. Like plumbers, doctors aren’t always there for you, however, and if they are, your psychological or emotional needs may not rank as a priority for them. Many people diagnosed with cancer soon find their faith badly shaken by their experience as a patient. The world, they discover, doesn't always work the way they think it should. Instead of empathy, they're met by indifference.

I know a wonderful, emotionally strong woman about my age with advanced metastatic breast cancer. She’s had several rounds of chemo in the last year, which has at least slowed down the advancement of mets known to be in several organs. To live much longer, she needs either divine intervention or an unexpectedly positive response to the latest drug trial she’s entered. Based on what she’s told us, her prognosis is not good. Making matters much worse is the fact that she has had no continuity in her care. She and her husband are nearly despondent over what they feel is aimless, impersonal supervision by the professionals who are charging for their services.

The city we both live in has a population of about 60,000 with tertiary healthcare services that includes two rival oncology groups. I know something about each one, as I’ve received care from both. My medical oncologist through months of interferon therapy in 2008 has since retired. He was already worn out by the time I got to him. The other two oncologists in his group, who were much younger, have also gone elsewhere. The second group in town hasn’t fared much better, with two out of three doctors newly on the scene. Patient demand, meanwhile, continues to grow. I have no doubt that these oncologists are sincere in wanting to help their patients, but I wouldn’t want any of them as my doctor. They are overworked and stressed out at least partly because they lack the backup support they need. I’ve heard that a good oncology nurse can work wonders. I’ve yet to meet one in four years of outpatient care.

Before my melanoma recurred last winter, I had already taken the precaution of seeing a melanoma specialist in Portland (80 miles north) in the event I might need one. As it turned out, I did and he is now directing my care. His group treats more melanoma patients than any other in Oregon. In a relatively small state, that’s not saying much, but the compromise I made in wanting to avoid the deteriorating scene in Corvallis was to keep things within an easy drive. Seattle has world-class oncology services, but they’re more than five hours away. For now, I’ve cast my lot with the cancer center at Providence Medical Center and a cancer surgeon at Oregon Health Sciences University. They’re both smart and competent, but the groups don’t offer much beyond what the doctors personally provide. There’s no mistaking either place for M.D. Anderson or the Mayo Clinic.

You may have read between the lines of what I’ve written a plea for the resurrection of the family doctor or its oncologic equivalent. Each one of us needs a guide who knows us as well as he knows the pathways by which we can be afflicted by serious disease. There are so many ways to travel through these thickets, so many choices to make, so many stations at which we may choose to rest, continue, or end the journey. What I long for—and what I suspect my friend mentioned above might agree with—is that the clinical objectivity applied to my care should be shaped by a doctor familiar with my values and my life, and not just from a virtual stranger whose biomedical skills I’ve called upon. At such times as these, it’s not the kindness of strangers I need, but the understanding of a longtime medical friend. I have a family doctor I see for the usual aches and pains, but he doesn’t try to keep up with my burgeoning file. I don’t need him to know much oncology, but after 15 years as his patient it would be reassuring if he took some personal interest in what threatens to kill me.

Dr. Sherwin Nuland has written in his book, “How We Die,” the following: “When I have a major illness requiring highly specialized treatment, I will seek out a doctor skilled in its provision. But I will not expect of him that he understand my values, my expectations for myself and those I love, my spiritual nature, or my philosophy of life. That is not what he is trained for, and that is not what he will be good at. It is not what drives those engines of his excellence.”

OK, fair enough. I have come to terms with making do with what I have been given. I do not ask of my doctors what they cannot give. But I haven’t given up on a system of healthcare in which we are not just treated as a set of disparate body parts and in which specialized care is brought to heel under the direction of a generalized, personalized plan. I’m in a better position than most people in knowing how to get the care I think I need. But I’m not a doctor, and I’m not immune to lapses in judgment. I fear for those less unequipped than I am to maneuver through the shoals of cancer care with their very lives at stake.