Seventeen months ago Dr. Lawson was diagnosed with mesothelioma, a rare cancer of the lining of the lung, caused by exposure to asbestos. Median survival after diagnosis is 12 months. Currently available treatments don’t work well. Mesothelioma is a bad cancer.
What follows is three excerpts from his article (in italics) followed by my comments:
1. After the diagnosis, Dr. Lawson saw three lung surgeons who gave him three different opinions, all delivered with the same degree of certainty. Here’s Dr. Lawson’s reaction:
“Doctors should discuss what is available and best for the patient, but some are tempted, subconsciously perhaps, to dress up opinion as fact. How many surgeons will tell you if a number of their peers don’t agree with them? That is not to say they don’t have your best interests at heart. It is just that the solution is preordained, the script written…When evidence is poor, what you get depends upon whom you see. So how can you make an informed decision in the absence of information? If your doctors do not know what is best, how can they advise?”Sadly, this is true on both sides of the Atlantic, and probably throughout the world. It is difficult for physicians to integrate the pervasive uncertainties of medical practice with the intense responsibility we feel for our patients. This leads us to project more certainty than is warranted – sometimes with the rationale that our confidence will increase the likelihood that the treatment will succeed (placebo effect), and sometimes to assuage our own anxieties.
Good ethics require that – with rare exceptions – we should tell it like it is. In my practice I often imagined a panel of ten experts in the situation the patient and I were discussing, and made an educated guess as to the range of opinions they would express. I had at least one experience in which I told the patient my view, and explained that in all likelihood at least nine of the hypothetical experts, perhaps all ten, would disagree, and why.
Here Dr. Lawson is identifying a problem best addressed by professional education and clear ethical guidance from professional societies, combined with an understanding of what the public expects of us.
“There is a lot of talk about ‘choice’ on the NHS, but my experience as a patient has taught me that the choice you get is a choice of what you are offered…if a doctor knows of a better treatment but it is available only in the wicked private sector outside the health service, he or she is not supposed to tell you about it, on pain of disciplinary action.”
I have no independent knowledge as to whether this is a true statement about the NHS. I hope it isn’t. Dr. Lawson’s critique is reminiscent of the infamous “gag rule” that some misguided managed care programs imposed in the 1990s – that physicians should not tell patients about treatments that would not be covered by the insurance! Steffie Woolhandler and David Himmelstein made this practice infamous in their 1995 New England Journal of Medicine article “Extreme Risk – the New Corporate Proposition for Physicians."
I’ve heard non-disclosure defended on the basis of not causing pain for patients with regard to options their insurance will not cover that they could not afford. But obviously individuals should not be denied the opportunity to advocate/appeal and to seek other ways of gaining access to a treatment they believe is right for them. I am a strong supporter of the need for insurance programs – whether the British NHS or a US health insurer – to set limits. But those limits must be explicit, and patients need to be told about the universe of legitimate treatment alternatives.
“Looking at what ‘treatments’ were available, I came across a group led by Dr Dan Sterman at the University of Pennsylvania working on an experimental method of treating mesothelioma. Using genetically modified viruses, they make the body attack the malignant cells. It is unproven and in the early stages of clinical trials, but they have had some success in small numbers. The science behind it is appealing, it does not involve killing healthy cells as with conventional chemotherapy, and it does not involve surgery so radical that the surgical team cannot decide which bit of the patient to send to the recovery ward and which to the pathology lab…Trials of new drugs or therapies might make all the difference to people with a cancer that is difficult to treat. So why shouldn’t patients in the NHS be able to try such innovative trials in the US — or elsewhere — if they wish?”
If I or a family member had mesothelioma I - like Dr. Lawson - would want to explore the Phase I University of Pennsylania trial. I might well want to participate if I was eligible. But should insurance pay for such a trial?
In the US a number of states mandate coverage for Phase I cancer trials. In principle I believe it would be better to have participating in a trial paid for by research funds. The kind of trial Dr. Lawson is participating in is an educated guess. The treatment may be effective, but we don't know. It might even turn out to be harmful. It is difficult enough to try to educate the public about the concept of evidence based medical practice without further confusing the situation by covering treatments that by definition do not have an evidence base.
As medicine becomes more global, more and more patients will want to participate in experimental trials in other countries. Insurers will find it next to impossible to distinguish "reputable" from "sham" trials. As much as I empathize with Dr. Lawson's wish to participate in the Pennsylvania trial and agree that patients "should be able to try such innovative trials," I can't agree that this kind of support for research should be the financial responsibility for a health care system.