Thursday, September 10, 2015

Atul and Andrea

Atul Gawande is a genius, a gift to us and himself, a prime example of why we benefit from immigration. I used to think we were stealing the world's resources by being the recipients of others' brain drain, but now I acquiesce, because I think plants need the right light and earth, and although there is usually plenty of the literal light and earth where these treasures come from, it seems that the cultural, political, sociological, psychological, and economic light and earth are what's really important for them. At home they might not wither and die, although they could, but they certainly usually would not grow and prosper and produce and express their genius the way they can here in the US. They would do some good, but they would be running on kerosene, not super-fuel, and they just wouldn't get as far and as fast. Yes, eventually they might change their home countries, but probably not. Stupid and unimaginative and acquisitive and unenlightened people of tradition would most likely just squeeze the life out of them if they stayed home in bitter frustration or resignation. Better they should come here.

Now I say that. Back in 1973 when I finished my Fellowship in Global Community Health in the US Public Health Service, and after languishing in Washington for a month or two before they figured out what to do with me, I was brought into a small meeting of five or six with Assistant Secretary of Health Charles Edwards and his Deputy Henry Simmons. One issue presented was how to facilitate physician migration to the US. They were trying to figure out how high to place me in their administration, maybe make me one of their special assistants because they knew how smart I was, but, I, I, I spent my capital by self-assuredly and self-indulgently and hostilely expressing the obvious truth that by facilitating immigration we were denuding the rest of the world of their human capital and it was immoral. Good for me! After all, what did I want to do when I was offered success? Why should I listen to Charlie Edwards when he softly suggested that it was the promise of America they were after?

I think at about the time I was expressing my self-righteousness to the Nixon Administration the Gawande family was settling into Athens, Ohio, and the topic of Being Mortal, what Marcia Angell calls his best book, was in the future. At that time the Gawande family of two doctors and two children was young and decline and fall was ignored, just as I myself ignore the same prospect today. I've seen the retirement homes, the assisted living institutions where my father and mother retired to, and I'm not having it for myself. I'll fight to the end! I'll make it on my own! I'll get some relative of our illegal immigrant housekeeper to come around and … do what? Gawande shows us in vivid portraiture what it's like. You keep going and are spry and active and alert and involved, until you're not. Your arteries clog up and your organs decay and you just can't do what you used to do, think as you used to think. You don't go live with a host of relatives whose generations live together in a rural Indian village. Just who is it who will really take care of me? Ever the hero, I've just said to myself that living is optional and when I've had enough I'll know how to leave. Actually, I'm full of shit. I'm caught just the way everyone else is, with the fruits of winning the longevity race not an olive branch crown but the cesspool of old age decrepitude sooner or later in institutions, which are changing but probably not fast enough.

What is most trenchant about Gawande's exegesis, however, is his indictment of the medical profession for losing its way, which I have felt and expressed in my non-genius, cynical (because I can't mount the attack that Gawande does) way for years. From the time I heard people described as “interesting cases” in medical school; from the time I was frustrated as medical school presented not the history of discovery of how to help our fellow human beings and what we have found, but rather presented the revelations of science where interesting cases were gifts to science; from the time when I saw that the ideal was effete intellects walking around hospitals that house human beings that will never be us, because we are doctors and therefore immune, of course until we're not; from that time to this I have thought the same thoughts that Gawande presents. We are taught by our profession of medicine to deny, to ignore humans and their needs; we are taught to fight to conquer disease and death and die trying. And Gawande shows brilliantly how the medical conceit, along with sociological and economic development, has led to the warehousing of human beings and treating them as decaying cogs in a grand wheel. Good for you, Atul! You have nailed it, and in a way that no one can ignore, in a way that points the way, in a way that shows compassionate hope for a profession that has denied compassion in reality if not in pious and hypocritical declaration of do what I say and not what I do within those high, white, institutional walls of science rather than human kindness and feeling.

I've always thought that I deny my future, but maybe that's not so. In graduate school in public policy I learned that planning is overrated, which I was happy to hear because I'm not very good at planning. Look at what I did with Edwards and Simmons, although maybe it was a proper if not graceful exit there, since I knew somewhere that I was not suited for bureaucracy. The alternative to planning is figuring out the next place in the foreseeable future you would like to be and leaving it to your own future good sense to figure out the place you would like to be after that. I'm an ENTP in Myers-Briggs typology – extroverted, intuition, thinking, perception. (To the uninitiated – you might want to look it up, Myers-Briggs, it's a powerful way to understand who you are and who everyone else is, and what strengths and problems we bring to the table). Heavy on perception, which means I don't like to make judgements now but would rather wait for more information, see what happens next. So, I resonated to that non-planning regimen, figure out the next step or two and have confidence you will chart a good path in the future. That's me. Maybe I don't deny, I put off. Sometimes it works, sometimes it doesn't.

Well, I wanted to write about Gawande, but I'm already off onto another book, reading Sarah Hepola's Blackout: Remembering the Things I Drank to Forget. And then Lola came over after school in her second week of kindergarten, and I told her there was a small neighborhood get-together up the street at the house Jackie Bandel used to live in, getting on everyone's nerves even before she got feeble and then died, and now it's going on the market and the realtor thought it would be a good idea to let the neighbors see the house first, and he had a taco truck out front with free food and a pastry maker frying a pure sugar concoction in the driveway. Lola is not one to miss a party and neither am I – both “E” in Myers-Briggs typology – so we meandered up there with Ann. It's not much of a house, but our neighborhood is terrific, so I guess it will fetch a hefty price in this market.

The neighbors were there and Andrea from up the street at the corner had a cane, for some reason. Was that really necessary, I wondered? I see her all the time up at the Claremont gym, taking her tall and strong body to swim in the pool and she's been fine. Guess she twisted her ankle. “What's with the cane, Andrea?”

She hesitated, but she is ENTJ, probably, emphasis on the E and T, so with lips quivering a bit she said to me, was eager to say to me, “I have metastatic lung cancer.”

She hadn't wanted to have a knee operation but it got to hurting so bad she had to go to Kaiser even if it meant an operation; something had to be done. An Xray led in another direction. An MRI scan showed tumor in bone – the right leg – and in the brain, with primary in the lungs of non-smoking and health-oriented Andrea. She blurted it all out as I led her to sit on the steps and put my arm around her shoulders and my wife Ann wondered what the hell was going on between me and Andrea as she talked to our fried Catherine, Andrea's next door neighbor. Kaiser had done well, Andrea said, sending her to their various sites – Richmond, Redwood City, etc. – for the cyber-knife, the enhanced MRI, etc. Now she was on an advanced drug that targeted her mutation. Kaiser had it all together.

Although what they don't have together is humanity. They gave her the increasingly bad diagnoses by telephone, and she didn't have anyone to talk to directly each time. But July 6 diagnosis to first week of August chemo is pretty damn good. And I know that when it comes to hospice Kaiser will probably shine. What I will do when and if I get my diagnosis in the non-Kaiser system will be a lot more chaotic, probably no more humanitarian, and going all over the place for services with no common record to rely on, probably. The system sucks. And I did promise myself that when and if I get a diagnosis, and if as I suspect maintaining weight will be an issue, I will get myself coffee milkshakes while I can still taste them, thousands of calories I deny myself while healthy.

Andrea is the giraffe lady. She has her house, much roomier than Jackie's old what might be craftsman but still dark and cramped with neighbors just feet away on each side, expensive piece of old shit. Andrea's house is filled with giraffes – dolls and toys and statues and pictures and dresses and everything you could think of giraffe. Maybe Andrea's height and slight awkwardness draws her to the giraffes. She took Lola and me on a house giraffe tour a year or two ago. What will we do now for Andrea? She's not a close friend, a neighborhood acquaintance, an interpersonally awkward emphasis on T, but someone who reaches out and I value the E. I'm awkward right back at her, now especially. What the hell do you say? I said that they do so much more with treatment now, which is so true. She answers that it is not curable and quivers. True enough. Where does it go?

How is Rick, her husband, I ask. He's back to work, if that's what you mean she answers equivocally. I meant that it must be very hard on him, too, and she doesn't seem to quite get that. She's such a T. I expected her to say that he's been devastated, too. Is she reaching out to me because she is so quivering inside and he, being T also, can't reach her, that no one can reach her? Don't get self-important, Budd; she's who she is and that's what she does. I told her I hadn't heard. She said that she figured everyone knew. Not us. I told Ann and she took it in. I told her I supposed she was wondering what I was doing over on the steps with Andrea.

When I was in practice in Walnut Creek and we were getting bigger as a practice, we had my colleague Beverly doing our rounds for the practice at Children's Hospital. That's where she liked to be and we were starting to differentiate roles. There in Walnut Creek I had a mother of a five or six month old call me in the office to tell me one of her son's eyes was deviating, and asking if that was important. I'm not the greatest diagnostician in the world, but I knew all too well what that meant. I referred her to an ophthalmologist, which was the wrong thing to do but at least I did it quickly, and from there it wasn't long until the MRI showed a brain tumor that was incurable. She asked me if I would be there with her during this process. I told her that the way we were organized she would be followed by Beverly, and that I couldn't be there for her. She asked me again and I said no. Shit. I might as well have been Kaiser.

Did I not want to see her son die? Did I not want to cope with her grief? I don't know, maybe. I cheated her out of the doctor she wanted to be with her and to hold her, and I cheated myself out of being a doctor the way a doctor should be. Did I go into pediatrics because the patients are usually well and it's a nice time of life, not a time of coping with decrepitude? Yes, certainly. I couldn't be a good cancer doctor, I would wilt. My denial would be shattered. But I could have done this for her. Shit.

I said to Andrea to call on us for anything, a forlorn hope. What to do? I think I'll take Lola up and see the giraffes again. Don't move away, move toward.

I hope Andrea didn't have big plans for her decrepitude. Probably not. She's more like me, probably, waiting to see what the end will bring. At least we have hospice care and the beginnings of what medicine should really be, as Gawande brilliantly points out. He's a genius and a light to the world. He shines it here on the long neglected part of our medical mission that is hopefully awakening and not being smothered by science, science, science, and all the men and some women who think think think and cannot feel feel feel, until it's too late. Which is what Marcia Angell found when her husband Arnold “Bud” Relman, former editor of the New England Journal of Medicine before she took that same post, was dying and finally died an excruciating death because, she says, Massachusetts doesn't have a permissive end of life policy. The F finally overwhelmed the T for her. Maybe the balance is being restored. But it will be a long time coming, as the scientists in charge of the medical schools still keep admitting more and more scientists, who don't get old fast enough to find their F.

Budd Shenkin

1 comment:

  1. Budd, I admire your courage to share your regrets, some of which I suspect many of us, not just in healthcare, have in common to some degree. May I recommend another blog similar to yours at it heart? the summer movie Mr. Holmes, also fundamentally about regret and redemption, shrouded in a lot of feeling trying to get through the rational, the thinking for which Mr Holmes was famous and admired, and constrained. Also about the vicissitudes of aging and Mr Holmes' adaptation to it. If you haven't seen it, please do. There is another leit motif in both the movie and Being Mortal, that of the swing of the pendulum, otherwise known as regression to the mean, between intuition and science, whether in healthcare, manufacturing, or care of our loved ones and those for whom we should have love, were we not so rational. During our generation in healthcare, we have witnessed the swing from Marcus Welby and Harry Horwitz, to "empirical, data-driven" decision-making, increasingly driven down to the cellular level, and I do not mean in the Zen sense. For those who have not read Being Mortal, I not only believe it should be perhaps the core text for the first week of all helping professions, but perhaps required reading with an encounter group for all human beings everywhere. It is superb although not quite as vernacular as your blog. :-) Again, thank you for yet another courageous Awakening, Budd. This is the first time I have ever posted to a blog because it was drilled into me as a child, "fools' names and fools' faces, always found in public places." You have moved me. I am proud to be among your friends and colleagues. Thank goodness you are an E.