I saw a woman yesterday making a decision that might lead to her death, and I feel powerless to stop her. I cannot talk about her in detail. Her gastrointestinal tract is not working – it is putting out too much. Her body thus is deprived of functional fluid in the blood vessels, which makes it difficult to supply the kidneys, and their filtration is failing. She is wobbling, has fallen several times.
Medicines might decrease her output, or supplement her diet with the nutrients her body cannot retain. But she thinks they harm her.
Surgery might help repair her gastrointestinal tract to absorb the nutrients she is losing, which might help her kidney function. But she is afraid surgery will kill her.
Neither of these beliefs is completely out of the realm of normal. Medications are routinely prescribed for slim benefit and without due discussion of harms. Surgeons can underestimate risk, and surgery can lead to terrible consequences.
I think and write a fair bit about letting patients make decisions that are right for them, but every once in a while — and maybe more often than that — I face someone who is digging themselves a very deep hole. My nightmarish vision is that they are watching it fill with their own blood.
I laid out the options: she could take medications; seek the advice of the surgeon or other specialists. I urged her to keep the appointment with the kidney doctor. One option, I said, would be to admit her to the hospital to get her treatment with more dispatch; the other would be to find a facility where she could live more safely while still maintaining a modicum of independence.
None of their satisfied her. I imagined that she was encircled, entrapped by an impenetrable wall, and all the rhetoric, empathy, and understanding were thin reeds that broke into shards against the rough bricks. I felt like I was sitting and staring at her, willing her to change her mind, and I had no power. Rather, I do have power, and exercising it might be helpful, coercive, or both. Would that be the action of my best professional or humane self?
We parted with a handshake and a thank you for each other’s time.
She thanked me for giving her my expertise as a doctor, though it did not change her mind or course of action.
And I thank her for teaching me what I can be thanked for.
It’s time to register (free) for our Partnering with Patients conference, June 1, 2016, at Johns Hopkins. It’s open to all.
Please submit an abstract in any field related to shared decision making. Deadline May 1.
Partnering with Patients in Decision-Making: Continuing the Conversation at Johns Hopkins will take place on June 1st, 2016, from 8am to 5pm, in the Owens Auditorium in the Cancer Research Building. Open to all, this meeting will feature discussions of clinical, educational, and research approaches to decision making in the Johns Hopkins Medicine context, emphasizing diversity, interdisciplinarity, and the particular needs of Baltimore. Two keynote speakers with national reputations, as well as a poster session, will help make this a day to assess where we stand and move forward to enable change. The meeting is free of charge.
Our generous sponsors are the School of Nursing, the Patient Experience Office at Johns Hopkins Hospital, and the journal The Patient — Patient-Centered Outcomes Research, as well as the Primary Care Consortium. Institutional sponsors include the School of Medicine, the School of Public Health, and the Berman Institute of Bioethics.
Please respond to this poll to let us know whether you might attend and how you might like to be involved further.
Zackary Berger, MD, PhD
For the organizing committee
In “A Letter for You,” appearing in Gravel, a white doctor tries to orient himself with regard to his African-American patients.
In the first issue of Dryland, a new litmag from LA, you can read my story “Pain and the Machine,” in which a floor buffer chases a janitor down the hall.
I’d love to hear your reactions to these.
Scott is sitting in the corner of the kitchen, feeding baby Antonina freshly pumped breastmilk since I am busy cooking. His voice is a little raspy and his hands are clumsy because he is on day 2 of Folfox cycle #6.
More about an unexpected juxtaposition here.
A patient writes (and I share with her permission):
On the night of April 20 after dinner I felt a great pain in my left shoulder and up along my neck. Chills and the pain prevented my sleeping. This pattern continued, severely, along with utter exhaustion by 3-4 PM every day and no appetite, through the 28th, while the pain began to extend into my left rib area, under my left breast. The 3rd night I remembered I had the 800-mg ibuprofen pills that Dr. B had given me, which I began taking every night thereafter, and it helped me sleep somewhat better. While all these symptoms persisted, after 4-5 days the overall pain began to slowly decrease a bit. On April 25, with my brother’s insistence, I went to the doctor. I was assigned to a Dr. A, who is working under Dr. D. She was worried that I might have had a heart attack, though we have no heart problems in my family. The nurse administered an electrocardiogram test, which turned out normal. Dr. D (whom I haven’t seen in 15 years or so!) also examined me. They had me get a chest x-ray and a blood test (for kidneys?) Dr. A phoned me today saying that these uncovered no problems, though a couple of little irregularities which she said are too minor to bother about. It was these that prompted me to have her send you the results, and this note of mine will give you their context.
All that being fine, now I have to return, on my own, to my original theory of what caused all this pain, sleeplessness and weakness. From early on I suspected that in working assiduously on the computer all day of April 19 and 20, I was unconsciously leaning strongly on my lower left arm and elbow – not having the perfect ergonomic set up for working on the computer. Nothing like this has ever happened to me before, though periodically I have tried to deal with the seemingly incorrigible constraints limiting my desk and desk-chair arrangement for using the computer. Though when I saw the doctors on April 25 I told them this admittedly-lay diagnosis, it didn’t interest them in the least, but now I”m pretty sure it explains what I experienced – though still not the complexity and severity of it.
Since you’re interested in the patient-doctor relationship, I thought I’d share with you my reflections on this happy-ending experience. (Though your book does help us a lot to understand the physician’s point of view). What I observed is that these highly trained physicians – both in “general internal medicine” – either weren’t interested in the “muscles and nerves” dimensions I had first proposed as a diagnosis, or else they didn’t have the basic knowledge or expertise to deal with what I related. I realize that they went for the potentially-fatal possibilities like heart, lung, kidney. Good. That’s reassuring. But even when I asked, before they dismissed me, what they would suggest about the severe pain and other symptoms, in the event that the tests showed nothing serious — even when I wanted to bring them back to the original problem, which still persisted – they offered no ideas about what might have caused all that I was going through, much less offered any details about how it might have happened, or guidance about what to do. And today when Dr. A phoned with the results, if I had not asked her specifically, she would not have addressed the problem itself. (She was not aware the pain had declined) When I did ask, she advised me to talk to a physical therapist, which I will.
Despite your excellent clarifications in your book, and re-orienting the patient’s perspective, we laypeople aren’t as compartmentalized in trying to think through our medical problems as you doctors are, though of course most of us are aware that the medical profession has various specializations. In my little episode, I thought that in the end the doctors I consulted would remember that I had come to them with a severe pain, and that they would eventually come back to addressing that. They seem very relieved that the worst hadn’t happened; but… hello? what about “me”? okay, if my heart, lungs and kidneys are okay, but what do you have to say about my pain and what might have caused it? and what should I do about it? I guess my original expectations in going to them were unrealistic.
Today, really for the first time, I feel fine. No pains. I hope I haven’t wasted your time with this little narrative, which I have not written out of frustration, but as part of our common interest in the “patient-doctor” interface.
I just got back from the annual meeting of the Society of General Internal Medicine. You should check out all the tweets.
Below is a poster that I presented there on how doctors and patients communicate in the hospital. Though the findings are limited and preliminary, I would welcome your comments!
You can get the flu – or worse — from a vaccine. Only old folks get strokes and heart attacks. Calories in, calories out. X-rays cause cancer. Sleep eight hours a night and drink eight glasses of water a day. Skip the sunscreen on a cloudy day. Take a multivitamin every day, just to be on the safe side. An apple a day keeps the doctor away. Exercise more to lose weight.
What are the most popular health myths, and how do they spread? Does social media spread scams faster that it helps dispel them? How can doctors help patients practice proven steps for prevention – and still keep up on current research themselves?
Great questions all. Leaving aside a quibble about X-rays and cancer (about which the jury seems to be out still, or at least conflicted), the list above points to something important about so-called health myths: they come in many different flavors. Flu is not caused by a vaccine; that’s just wrong. But older people are generally speaking indeed at higher risk of strokes and heart attacks (though of course it’s not only them). “Exercise more to lose weight” isn’t exactly true, but exercising is one way to keep off weight lost through reduced caloric intake (and – can lead to weight loss by itself, actually).
All this is just to say that one myth may be quite unlike another. They are as diverse in their way as any kind of belief. Thinking more about it, I would like to jettison the whole term “myth” altogether. We all have beliefs. Some of them hew fairly closely to the science – others don’t.
What the summary above artfully avoids is potentially the most interesting question: who believes most in scientifically unfounded assertions? Is it patients, or doctors (and nurses) themselves? I would wager that we are all in the same boat. Much as doctors don’t know statistics, much of us don’t practice according to the medical evidence either.
If you push a little bit on many medical assertions once held to be widely agreed-upon truths, you will find yourself coming away with a handful of dust — and more, if you push harder. Does everyone need screening for prostate cancer? No. What about breast cancer? Unclear. Does vitamin D help much, say, for heart disease (except in older populations at risk of fracture)? Maybe, though the evidence is thin. If we treat mild hypertension, can we expect mortality benefits? Doesn’t seem that way. Yet practices based on these suppositions persist.
In other words, doctors are as much myth-makers, and myth-peddlers, as patients. Which means we all need to reevaluate our relationship to science. If doctors can be as uncertain as patients, shouldn’t we be skeptical of the hierarchy that still obtains in certain quarters? Shouldn’t we come together to discuss our fears, preconceptions, worries, and expectations?