Culture of Medicine

In a December, 2011 Health Affairs Narrative Matters piece, Maran Wolston describes a nightmare. Diagnosed with a serious illness (MS), she seeks care from a clinician-scientist at the forefront of the field (who is not named). He recommends some invasive and high-risk drugs, including a clinical trial. After suffering through one course of his recommended therapy, she begins to feel uneasy about his advice and does some homework. She discovers that manufacturers of drugs he recommends have paid her doctor hundreds-of-thousands in speaking and consultation fees. Ms. Wolston wonders if the doctor recommended invasive treatment because it was best for her or because it was best for the companies who pay him. Eventually, she transfers her care to an unconflicted doctor she can trust.

How do we trust our doctors and healers? As sociologist Talcott Parsons pointed out long ago, we’re vulnerable when we’re ill, we turn to experts for healing and support, and we need to be able to trust those experts. Trusting is fundamental, not a nicety.

Ms. Wolston’s experience taps into our fear that doctors may follow orders from pharma paymasters instead of listening to patients. The data we’ve collected so far in the patient deliberation study suggest it’s far from that simple. The academic experts we study often “like” a particular drug before it has been fully tested. They may even prefer a drug because they like the biological pathway it uses to attack cancer. What if Ms. Wolston’s doctor didn’t listen to her because he believed in the treatment he recommended not because he wanted the money from pharma?

We trust doctors because they’re the experts, but their expertise can undermine our ability to trust them. Talcott Parsons focused on the first part of this equation, arguing that the medical profession needed to have independent expertise precisely so we could know they’re not corrupted. If doctors build and maintain their own storehouse of knowledge, they can do what’s best for patients rather than shill for particular remedies. Paul Starr’s social history of American medicine describes how doctors used their expertise in human biology to establish themselves as a trustworthy caring profession. But expert knowledge can corrupt human relationships just like money or power. The medical profession, having established itself as “the expert” on human biology, must defend its claim. In the patient deliberation study we see doctors (and nurses) struggle as their desire to be a caring profession runs up against their need to be an expert profession.

Let’s stop drug companies from trolling for company shills; such shilling may well have caused Ms. Wolston’s pain and suffering and that’s despicable. But let’s not pretend that ending pharmaceutical shilling will repair breakdowns of trust in contemporary medicine. David Mechanic has a thoughtful essay on the erosion of trust, and he suggests a number of things that can be done. It’s worth reading.

That said, my gut tells me that Mechanic’s suggestions — which focus on changes in the healthcare system — don’t get to the heart of the matter. I’m thinking that larger, structural changes in the kinds of knowledge medicine considers its “expert domain” are needed. My UCSF colleagues Molly Cooke, David Irby, and Bridget O’Brien have suggested some reforms in medical education that seek just that. If doctors make listening a more consequential part of their core knowledge, it might make it easier for the profession to temper its excitement over new treatments and it might make it easier for patients to trust them.

The NYTimes The New Old Age blog recently interviewed Stephan Workman, an internist in Halifax, Nova Scotia, who has called on doctors to use more direct language when patients are dying (Plain Speaking at End of Life). Dr. Workman published a Perspectives piece, which caught the reporter’s eye, in which he wrote: “The problem of an inadequate end-of-life care for hospitalised patients not specifically receiving focused palliative care is common, but avoidable.” He describes how doctors might avoid this problem by using clearer language when speaking with patients. In his interview with The New Old Age, he describes how patients and their families react in a positive and constructive fashion when he uses this direct approach.

It’s comforting to think doctors could solve a serious problem like inadequate end-of-life care by doing their job better and communicating more clearly to patients. In the patient deliberation study, we’ve been exploring this issue and identified some challenges. The oncologists we have interviewed have said one challenge is they don’t know when a patient is going to stop responding to treatment (perhaps related to medicine’s retreat from prognosis, which Nicholas Christakis has examined). Others say they don’t want to take away a patient’s hope by being too direct. We’ve seen both issues play out in our clinic observations. But, neither touches on another, powerful dynamic, that we’ve seen in the clinic (but not heard about in interviews, interestingly).

During clinic visits, we’ve regularly noted an interesting back-and-forth between doctor and patient when the news is bad. It goes something like this. The doctor says a biomarker or CT shows the cancer has progressed, the patient asks what does that mean, the doctor explains it means the treatment isn’t working, the patient asks what can we do, there are other lines of therapy says the doctor, and the patient asks about them. From here, there is usually a long and increasingly detailed discussion of what the therapy involves (treatment schedules, side effects, etc), and the disturbing fact that the cancer is growing is never mentioned again. Anne-­Mei The documented a similar dynamic in a careful ethnographic study published in BMJ more than 10 years ago. The title of her paper: “Collusion in doctor-patient communication.”

Workman cites The’s study but I don’t believe he takes doctors’ role in the collusion seriously; he argues that collusion doesn’t help and says doctors shouldn’t do it. The real question is, how do doctors refuse to collude? As our observations suggest, doctors don’t decide to collude; some of them use pretty blunt words, at the start anyway. But, over and over, we see doctors and patients partake in quiet collusion via small, well-meaning, bits of talk. Back and forth the conversation goes, innocent every step of the way, and then suddenly the uncomfortable fact of cancer progression has been “forgotten” and a safer and more comfortable discourse (what do we do next?) has taken its place.

The collusion we can avoid is pretending this is easy to fix. Our belief in technology cradle to grave raises profound cultural problems. Perhaps blunt words at the ICU bedside or in the oncology exam room will help, but they’re far from a panacea when it comes to restoring much-needed humanity to end-of-life care.