Bioethics Symposium Examines Ethical Dilemmas in High-cost Medicine

Held at the Health Sciences Learning Center, the event featured internationally recognized thought leaders on the ethics of health care delivery, economics and pricing.

As the keynote speaker, Elisabeth Rosenthal, MD, editor-in-chief, Kaiser Health News, and author, “An American Sickness: How Healthcare Became Big Business and How You Can Take it Back,” addressed the topics of whether doctors get paid too much and how society should navigate the profit in nonprofit health care.

Other speakers included:

• Dean Baker, PhD, co-founder, Center for Economic and Policy Research
• Alyna Chien, MD, MS, assistant professor of pediatrics, Harvard Medical School
• Yousuf Zafar, MD, associate professor of medicine, Duke University, associate professor, Sanford School of Public Policy

Following the presentations, faculty and staff from the School of Medicine and Public Health, UW Law School and UW Health participated in a panel discussion on the implications of duties and obligations created by the high price of Spinraza, the first drug approved in the United States to treat spinal muscular atrophy, a rare neuromuscular disorder.

“We hope attendees walked away with a firmer grasp on why U.S. health care costs so much, what that means for decision-making by doctors, patients and hospitals, and what might be done to ‘bend the cost curve,’” says event co-organizer Paul Kelleher, PhD, associate professor of medical history and bioethics. “At the very least, we want people to think about this topic as an ethics issue, and not merely as a finance issue.”

Fourth Annual Bioethics Essay Contest

Mark Kelly, fourth-year medical student at the University of Wisconsin School of Medicine and Public Health, received first place for his submission to the fourth annual Dr. Norman Fost Award for the Best Medical Student Bioethics Essay. Kelly’s essay explored the theme of the 10th annual Bioethics Symposium, “Follow the Money: Ethical Dilemmas in High-Co$t Medicine.” Essays followed criteria in reaction to a stated scenario.

Patients Deserve to Know the Price: The Ethics of Discussing Medical Costs

By Mark Kelly

The American health care system is exceptional in how frequently it threatens patients with financial ruin. Medical care routinely causes non-medical harms: “illness or medical bills contributed to 62.1 percent of all bankruptcies” in 2006; 20.4 percent of cancer survivors report “material financial hardship associated with cancer;” and medical costs lead to home foreclosure, food insecurity, homelessness, worsened health and non-adherence to treatment plans. Ethical and effective medical practice requires that American physicians acknowledge these harms to acquire informed consent, respect patient autonomy in decision-making and provide high-quality care.

The ethical notions of informed consent and patient autonomy rest on the belief that patients are the best stewards of their own interest. When medical costs compete with housing payments (and threaten bankruptcy, foreclosure and homelessness), only the patient is positioned to allocate their own funds sensibly. American physicians must proactively inform patients of the cost of care so that they have the requisite information to protect themselves from non-medical harms. Without these discussions, true informed consent and patient autonomy cannot exist.

A discussion of cost also is essential to the provision of high-quality patient care. Cost-related non-adherence to therapy is rampant in American health care, affecting 12.6 percent of elderly Medicare enrollees, 29.4 percent of disabled Medicare enrollees and 24 percent of cancer patients.

Physicians who neglect discussions of cost will prescribe medications that patients cannot afford and will not take, remain misinformed about the treatment that patients receive and mislead other providers about their patients’ current treatment status. Proper patient care and concern for patient safety, therefore, provide a pragmatic rationale for discussion of health care costs.

Some may argue that discussing costs with patients will force the burden of care rationing onto the patient and that such coarse economic discussions risk poisoning the physician-patient relationship. They are correct. However, this burden and corruption originate from the discriminatory role that cost sharing plays in deciding who receives care in America, not from physicians discussing medical prices with patients.

These discussions merely permit patients to evaluate the relative value of medical care compared to the burden of medical expenses. Indeed, frank discussion of cost may actually improve physician-patient relationships by acknowledging sources of patient frustration, distrust and inability to comply with care plans.

In America, where bankruptcy is only a hospital stay away, respect for patient autonomy and decision-making makes the discussion of cost with patients an ethical and practical necessity. However, discussions of cost are not ethically required in countries where there is universal health coverage and minimal cost sharing, because patients can receive health care without altering their consumption of other goods and services.

The ethical requirement is an artifact of the arbitrarily assigned and punitively expensive prices of American health care. Physician disclosure of costs is an improvement over non-disclosure of costs, but only marginally.

As many countries (and America’s own Veterans Administration) demonstrate, the ethical burdens on physicians and the financial liability of patients can be simultaneously eliminated through health systems that are free at the point of care and require minimal cost sharing. Ultimately, implementing such a system nationwide would be the most comprehensive means of resolving the ethical questions surrounding the discussion of cost in American health care.