What’s an internist to do when an 81-year-old patient, already in failing health with advanced emphysema, seeks a second opinion because he’s been told his prostate specific antigen (PSA) levels are unacceptably high? This senior also has been advised to schedule a prostate biopsy urgently to determine if he has cancer. Can this discussion with both a scared patient — and his bright, concerned personal doctor — be any tougher?
For Andrew Lazris, who is also a geriatric specialist practicing in Maryland, this was a hard, complicated case because it involved his dying dad.
It also exemplified for him the work that he has undertaken with Eric Rifkin, an environmental scientist and adjunct researcher at Johns Hopkins University, in ensuring that patients retain their fundamental and critical right to have a say in their care. And, in doing so, they have developed what they argue is a clear, comprehensible way to help patients grasp and deal with the inevitable uncertainties, risks, and complexities of the array of medical treatments they can get overwhelmed with by doctors, hospitals, Big Pharma, medical device makers, and others in health care.
Rifkin (photo, right) and Lazris (photo, left) knew that doctors don’t get much help in learning how to listen and communicate well with patients. This concern has grown as medical services and products have become costlier and more complex. Ensuring that all caregivers provide informed consent, the crucial concept that patients must get all the important facts to make an intelligent decision about what treatment to have and where to get it, has become a challenge when much of modern medicine forces those already sick and injured to make tough choices in gray areas.
A key aspect of their work focuses on their development of an easy-to-understand visual tool that helps doctors ensure that patients share in decision-making about their care. They call their visualization the “Benefit/Risk Characterization Theater,” and they have reported in their book, “Interpreting Health Benefits and Risks: A Practical Guide to Facilitate Doctor-Patient Communication,” that:
We have successfully used [the tool] to assist patients in determining: their level of acceptable risk; if the benefits of intervention outweigh the risks; who should make the final decision regarding medical intervention; and, whether the decision is evidence-based.
The expert duo ask doctors and patients to see in their minds a 1,000-seat theater — a space roughly half the size of the Kennedy Center Opera House.
They then use this imaginary theater to assist patients, illustrating the risks of an array of treatments and procedures. They convey absolute not relative risks (more on that in a second), and they deal with pragmatic factors — discussing, for example, not whether a drug helps a patient reduce a mere laboratory number like cholesterol, but whether the drug cuts actual rates of death from heart disease.
They display the measures concretely with seating-chart type diagrams, showing, for example, that, “If there were 1,000 people sitting in a theater with significantly elevated cholesterol levels of 280 mg, there would be one additional death, represented by one darkened seat, per year from coronary heart disease as compared to 1,000 people with normal cholesterol.”
The theater view of medical metrics helps them explain but steer clear of glib but misleading scrambling of relative risks and absolute risks. As they explain:
[R]esearch has shown that 1,000 people with elevated cholesterol levels would have two deaths annually from [coronary heart disease] and 1,000 people with normal cholesterol would have 1 death annually from [this disease]. To calculate relative risks in this situation, [the] focus would be on the 2 deaths compared to 1 death. The size of the group being studied would be ignored. Since 2 deaths is 50 percent more than 1 death, a pharmaceutical company could state the following: Studies clearly demonstrate that lowering cholesterol reduced deaths from [coronary heart disease] by 50 percent. Sounds like a genuine medical breakthrough! No matter what cholesterol lowering drugs cost and what side effects they may cause, you need to take them. The point is that without an appropriate context, 50 percent is a meaningless value for patients (a meaningless value for anyone). The result is that patients are bombarded with information that leads to exaggerated expectations of the benefits of medical intervention and the risks of not taking drugs.
Lazris and Rifkin, in expanding their copyright-protected work, decided their imaginary theater would be most useful if extended to explain risks on a robust array of treatments and procedures, including screening and testing for: mammograms and breast cancer; colonoscopies and colon cancer; prostate cancer; lung cancer; cholesterol; dementia; and osteoporosis. They address smoking’s harms, as well as patients’ taking in different situations products like statins, warfarin, vitamins and supplements (including calcium and Vitamin D), antibiotics, and aspirin.
From what I have seen, this is laudable work, especially because, in my practice, I see not only the harms that patients suffer while seeking medical services, but also their frustration, confusion, and struggles to find reliable, useful, and comprehensible counsel while also striving to afford and access safe, effective, and even excellent medical care.
As part of recent reforms of the U.S. medical system, the Affordable Care Act sought to not only provide health insurance to millions of uncovered Americans, Obamacare also emphasized patients’ important stake in having a say about their medical care. But patients are growing increasingly angry with medicine and its practitioners because the field is so filled with complexity and uncertainty buried under layers of mumbo-jumbo. The British public health system has viewed doctors’ snobby, confusing use of jargon as so problematic it has scolded its 250,000 practitioners, telling them to communicate, please, in plain English over Latin, layman terms over medical lingo.
But the problems run deeper, as Rifkin, Lazris, and others advocating for patients have pointed out. Big Pharma and medical device makers have poured tens of millions of dollars into lobbying pro-business partisans to not only speed up what can be regulators’ rigorous and careful testing and oversight of drugs and medical products, they’ve also shifted key evaluation measures. This has meant, for example, that cancer drugs get raced to markets not because they save, improve, or extend sick patients’ lives but because they show they may shrink the size of tumors. Seeking big profits and ignoring the “financial toxicity” of the costs of care, Big Pharma has pushed much promoted costly new cancer therapies onto patients, while mumbling and downplaying questions about their effectiveness in changing or saving their lives, for how long, and now much new products may be an improvement compared with existing drugs.
Lazris and Rifkin, with their theater displays and approach, offer a twist on the existing Number Needed to Treat or NNT, what has been an essential way for perplexed patients to look at a single or just a few medical statistics to try to decide the value to them of a drug or treatment. Their way to present data, however, may be particularly useful in an ever more visually sophisticated world.
Whichever means helps best, patients need such assistance because the stakes for them are so high, as Lazris and his late father experienced years ago. Because he was a doctor, had expertise, could retain his cool, and could, based on facts and evidence, persuade a colleague — his dad’s physician — about a procedure’s risks and harms, Lazris intervened successfully. His already exhausted father, on oxygen and having just months of survival due to his emphysema, heard from his physician, finally bending in the face of facts well-presented in the statistical theater, that he did not need to undergo a painful, invasive prostate biopsy, nor worry further about possible cancer treatments.