In July 2008 my wife, Linde, was diagnosed with advanced squamous cell carcinoma of the oral cavity. Her subsequent treatment has led me to view American medical care from a different perspective. What Linde and I have learned over the past two years has broadened my fundamental beliefs about medicine. In sum, while amazing advances have been made and miracles are occurring, medicine is still very much an art.
I’ve spent nearly 40 years in the business side of the health care industry, including the last seven as CEO of a health plan. I believed my network of contacts would serve us well. I presumed there were unambiguous answers to questions about the best treatment plan and the best providers.
What I learned was that for uncommon diseases like Linde’s, if not all diseases generally, clear answers don’t always exist. Indeed, I will never forget one doctor telling me that the information I sought was not available and that I would have to trust my gut! This is pretty incredible when you think about how much as a society we spend on health care.
The new federal health care reform law importantly promotes the adoption of health information technology and supports comparative effectiveness research to understand the marginal contributions of new drugs, devices and procedures. But what we learned with Linde’s treatment is that data on innovations, especially for less-common diseases, are not sufficient to broadly create "evidence-based medicine." This is because often medical research, even when coordinated and summed across the industry, does not have enough patients suffering with a particular disease to test alternative treatments using scientific (i.e., trial and error) methods. I can’t tell you how many times I heard from physicians that "every patient is different."
This same criticism is true in assessing practitioner expertise with a particular treatment for a particular disease. To assess a treatment or the expertise of a practitioner, one needs to "risk adjust" for differences in the patients. It’s more challenging to care for an older patient than a younger one. Likewise, patients with diabetes are more difficult than those without. There are a myriad of risk factors, and standardizing for them is difficult if not impossible.
This has implications for what we call "centers of excellence" and how we prepare doctor report cards. We really don’t want clinicians to avoid "riskier" cases to have better performance statistics.
In the face of these limitations, clinicians often rely on their understanding of underlying disease processes to decide the best course of action. Leading medical organizations convene panels of experts to offer consensus opinions about the most desirable approach to diagnosis and treatment. The work of these panels is important, but it’s not the "gold standard" as sometimes these opinions are later deemed unfounded.
The recently developed human genome provides promise for gaining disease process insight, but it’s very much a work in progress.
Said in other words, there isn’t as much hard science as one would like.
So what do we do? I wish there was an answer that assured the creation of real value. After all, I’m a business executive who runs a health plan providing health benefits to thousands of employers. I’m also a taxpayer who supports government programs. Unfortunately, there are no such assurances, but there are steps we can take.
As a society, we need to be honest about treatment limitations. Patients should be well-informed about what the industry knows and doesn’t. There should be candor about the likelihood that care will make them worse versus better. Literacy and self-confidence challenges should be confronted. Patients should be truly empowered to be the treatment decision-makers.
In recognition of the uncertainty patients face, we also need to provide emotional and spiritual support. We need to compassionately acknowledge pain and fear. We need to counsel that heroic intervention isn’t always the best course of action.
I share these findings not to suggest dissatisfaction; indeed, Linde and I are grateful for her care. Linde’s clinicians included our country’s most respected doctors, who did what they were trained to do-aggressively seek a cure.
Rather, these observations are offered to challenge American medicine to be more integrative in care delivery, to be more explicit about medicine being an art, and to borrow from the spiritual and the softer sciences to improve the experience of the patient and caregiver.
There may be some economic benefit here too. As patients learn more about the limits of medicine, some may select less intensive and expensive care. As a country, our spending increases as patients face the end of life.
Since its onset, Linde’s cancer has come back twice, most recently this fall. The first time it recurred, she continued her inspirationally courageous and valiant fight. The second time, she learned that if further curatively treated, care would be painful, risky and quite probably leave her partially disabled and deformed. She was further told that the likelihood of having an extended, high-quality life was very remote. With that knowledge, she opted for palliative care favoring quality of life over length of life. My acceptance of her decision, while very hard, was the best way I could show my love and support.
Linde commends her clinicians for being great teachers. They were candid and patient, used non-clinical terms and shared their uncertainty about the effectiveness of suggested treatment. Their support of her as the treatment decision-maker was wonderful.
Linde and I have opted to share our journey because we hope the understanding of medicine we have developed will be helpful to others.
David H. Klein is president and CEO of Excellus BlueCross BlueShield. This piece previously appeared in Bloomberg Businessweek.
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