Tuesday, November 30, 2010

Living with Chronic Illness - Julian Seifter's Wise Guidance

I've never met Dr. Julian Seifter, but over the years I heard about him from patients with kidney disease who he treated. (He's a nephrologist.) My patients were impressed with his skill and touched by his humanity.

Today's New York Times has an interview with Dr. Seifter about living with chronic illness. I learned from the interview that he has had diabetes since his early 30s (he's 61 now) so he knows first hand about chronic illness, which he sees every day in his practice. Here are some of the pearls from the interview, with my comments in bold italics:
  • "I counsel my patients to replace what they’ve lost with something new. I had one patient who was a scuba diver and who loved discovery. I had to tell him that with his condition scuba diving isn’t safe for him. So I’ve encouraged him to prospect for Native American relics in the Southwest desert, which he’s also interested in. It’s a way he can still be an explorer, but not risk his kidney." [What a creative idea! Even if it hadn't clicked for the patient, it showed that Dr. Seifter understood the patient's soul! Once in my practice I realized that a patient with depression was describing the symptoms in wonderfully evocative, gallows humor language. I asked - "have you ever thought of doing stand-up comedy? You've helped me understand that some humor consists of depression turned on its head." My patient ended up studying comedy for a while. Anti-depressant medications caused miserable side effects and did very little. Cultivating humor had no noxious side effects and helped a lot.]
  • "[Chronic illness] can shake you out of old habits and routines. It takes away the 'taken for granted.' You’re invited, almost forced, to find new directions and pursue unexplored potentials. I had a patient, Cassandra, an opera singer, who first came to me because it was thought she had a kidney problem. It turned out she had a severe inflammatory condition in the head and neck — in the larynx, her instrument. She could no longer sing professionally. With no science background, she began reading the papers on her treatment and cultivated an interest in the illness. Eventually, she went back to college, took science courses and got accepted to medical school. She’s about to become a nephrologist." [Here Dr. Seifter doesn't comment on what was probably the most "active ingredient" in Cassandra's treatment - her identification with him and his ways of adapting! As Albert Schweitzer said, with only slight exaggeration - "example is not the main thing in influencing others; it is the only thing."]
  • "If someone rejects dialysis, I want to make sure they’re not doing that because of depression. If a patient is wavering, I’ll say: 'At least try it. You can always come off.' I had a patient who, at first, rejected dialysis, but who agreed to a trial and then found that the treatments made him feel so much better that he then wanted to stay on. It was a three-times-a-week commitment, but he came to see how he could fit it into his life — which he’d still have." [The challenging part of what Dr. Seifter is describing is conveying to patients that as much as he hopes they will find a way to savour life, he's prepared to support them in refusing dialysis and letting life come to an end.]
  • "I try to meet my patients wherever they are so that they will [try dialysis.] I had one who wanted to go to Florida a last time before starting dialysis. I worried about him. His condition was such that he might have heart failure. But I also knew he’d never go onto dialysis without doing this. I said, 'O.K., call me when you land in Miami.'

    He said, 'Doctor, you don’t understand, I’m driving down.'

    Now, this was really dangerous. So I said, 'Call me from each state and I’ll have the address of someone you can check in with in case there’s an emergency.' [Here Dr. Seifter is applying the "dignity of risk" principle in an elegant manner. From a strictly medical perspective, or a CYA approach to liability concerns (if you don't know what the acronym means, see here), the patient's idea was cockeyed. But Dr. Seifter understood how important a last visit to Florida was for his patient and put himself out to help the patient pursue his dream in the safest possible way. (For a short video discussing "dignity of risk" from a medical-legal perspective, see here.]

    The phone calls came in regularly until the last day of his trip. I was worried and I called his home in South Florida, and there was such an incredible noise in the background that I could hardly hear his wife. 'What’s going on?' I asked. 'That’s the rescue helicopter on the front lawn,' she said. He’d made it there, but then needed to be airlifted to the hospital!

    [I don't regret enabling his journey.] From my own experiences, I understood why patients sometimes resist doing what’s best. The idea of sticking yourself with a needle every day for life: that wasn’t easy for me to accept. I hated the thought that every morning I was going to wake up knowing, 'I have diabetes.' So I’m not a puritan with my patients. You have to do what is possible...Everyone needs the opportunity to forget their disease for a while and think of other things. Otherwise, they can become their disease. So: I’m not a diabetic. I’m a doctor who has diabetes." [Dr. Seifter's distinction between the ailment and the person is especially important in psychiatry, where the condition affects perceptions, thoughts and emotions. Sometimes "bad behavior" was best understood as a product of the illness. But at other times patients (and their families) - appreciated comments like - "just because you have schizophrenia doesn't mean that you won't sometimes act like a complete jerk the way everyone else does." And given the wonderful differences between people, some patients reject Dr. Seifter's distinction for good reasons, as when a patient to whom I'd said "you have alcoholism" replied, with some heat, "Doc, you don't get it - I don't 'have alcoholism,' I'm an ALCOHOLIC. If I forget that I'll get to thinking I no longer 'have alcoholism' and can start drinking again.!"]
(I haven't yet read the book "After the Diagnosis: Transcending Chronic Illness," written by Julian Seifter and his wife Betsy, but I've looked at it on line and it looks terrific!)

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