Mary comes in to see her physician, who she has known for five years, clearly worried. The trust between them is excellent. Mary is 42 years old, works as a waitress and has struggled with Metabolic Syndrome. It is hard to manage the high blood pressure, high cholesterol and the need to maintain a healthy regimen of diet and exercise when you are sometimes working two shifts, trying to manage two teenage daughters and have a husband who is a truck driver and is gone much of the time. The partnership between Dr. Sheila Jones and Mary has been excellent through the years and that relationship has led to control of Mary’s blood pressure and lipid levels even while the ability to eat well and exercise is limited due to life getting in the way.
Today’s visit is different. Mary is frightened because two people she works with have been diagnosed with breast cancer, and another third friend has also just started chemotherapy for breast cancer diagnosed three months earlier. She knows that none of them are direct relatives, and that she does not feel any lumps when she examines herself, however she wants to be screened. Dr. Jones sits and talks with her, telling her of the data that shows little to no benefit to screening before age 45 or 50. Dr. Jones knows that the American Cancer Society guidelines do say that women over 45 should be screened and women ages 40 – 45 who wish to have a screening mammography should be able to do so. However the US Preventive Services Task Force (USPSTF) says that screening should start at age 50 and the healthplan follows those stricter guidelines. The screening mammogram may not be paid for since Mary has no medical risk factors, only inordinate fear. Mary cannot afford to pay for a screening mammography from her own pocket as money is very tight.
Dr. Jones knows that, statistically, the test will offer no benefit. For Dr. Jones, ordering the screening mammography will be a mark against her on the scorecard that the healthplan keeps and may impact her income and even more importantly, her reputation as the scorecard is available publically. Dr. Jones talks to Mary and tries to dissuade her from having any test but Mary is not to be moved. She wants the test or will try to go elsewhere to get it done even if that means switching doctors which she does not want to do. Mary needs the relationship with Dr. Jones to be strong as her Metabolic Syndrome successes to date may be compromised by a breakdown in trust and a transition to a new doctor.
Dr. Jones thinks through her options. She can call the healthplan medical director who may help her by making an exception however the healthplan medical director is told very clearly that his job is to communicate and obtain complex medical information that may not be reflected in the claims data, and not to go against the medical policy of the plan. The healthplan lawyers are fearful that making decisions against medical policy sets legal precedent and may be used as evidence that they are not consistent in their fiduciary decision making. Trying to work through that system can be a nightmare. Or Dr. Jones can order the mammogram, not as a screening test but as a diagnostic test – a “rule-out” breast cancer. She can say that she feels something on physical exam even though she does not. It will maintain trust with Mary and will allow Dr. Jones to continue to be seen as her advocate. It will also save time when she has twenty patients to see that day. Dr. Jones tells herself there is a small risk that a false positive will be seen on the mammogram that will require more testing, perhaps even biopsy but there is also an extremely small chance the mammography will show a true positive that was unsuspected! We are dealing with statistical probabilities after all. Yes it involves telling a small lie and having something paid for by the healthplan that should not be paid for however how much more will it cost the plan if Mary’s Metabolic Syndrome was totally out of control due to her losing Dr. Jones as a trusted physician and she ended up with full blown diabetes, heart disease and all the complications.
I present this as a dilemma and I admit for some, it is not a dilemma at all. Many believe that the doctor must base all their decisions on the medical guidelines, deny the test and move on to the next patient. Dr. Barron Lerner, a professor of medical ethics at NYU Medical Center recently wrote an article in the Washington Post asking why the American Cancer Society took so long to “ignore evidence about early detection” when they recently increased their the screening age from 40 to 45 in breast cancer screening guidelines. He writes, “in an era of cost containment, we need to prioritize payment for proven interventions.” However we are also in an era of trying to determine what the patient values not only what medical protocol says.
In an article in JAMA Lynn, McKethan and Jha discuss the challenge that, as their title states it, “Value-Based Payments Require Valuing What Matters to Patients.” They make the point that we must ask patients what they value and then deliver on those priorities. However we must acknowledge that patients often value reassurance and family concerns over the strictly medical. They are often more influenced by friends and family than they are by statistics and expert opinions. In Mary’s case, she wants reassurance and wants to know that her life balance will not be upended. She sees her friends struggling with all aspects of their lives as they deal with this potentially deadly disease. They approach her about caring for their children if they die. She must know that is not about to happen to her and she wants that test.
In the JAMA article, the authors say “serious, life-altering and ultimately life-ending chronic conditions, often in old-age, pose a particular challenge for the health-care system because traditional professional standards may not effectively address what an individual most wants.” I take issue with that emphasis. I believe that often the most difficult issues are the more mundane, everyday issues that physicians and nurses encounter in the outpatient setting in the course of their daily practices. Just like the metaphorical flap of a butterfly wing in Brazil (as described by Lorenz in chaos theory), that may change the course of a tornado in Texas, these small interactions with patients everyday may have in aggregate much greater effect than the issues of the patient dying of end stage disease.
The real challenge then is how to build these shades of grey decisions into systems of care. These decisions involve people’s lives and not only their diseases, and occur between doctor, nurse, therapist and patient every day. How can we make them work for both populations and for individuals? Ultimately we must build health care processes and value based payments that respect the biomedical protocols as well as the humanistic, emotional, social and financial concerns that drive people’s lives. We must build this for everyday medicine and not just intensive care and end-of-life medicine in order to maintain people’s trust in health care and solve our healthcare cost problems.