Ethical Dilemmas in "Patient-Driven Care" Confronted by Experts

DERBY, CT - Experts in health care from the Yale School of Medicine and around the world met at the Yale School of Public Health on Saturday, April 6, to confront the challenges and ethical dilemmas posed by "patient-driven care", in a program co-sponsored by Planetree.

Patient-driven care refers to patients playing an active role in medical decision making, exercising autonomy, and having considerable control over the choice of medical therapies. A movement toward greater patient autonomy in health care goes back at least several decades in the U.S. Planetree, Inc., an international organization devoted to patient empowerment, was founded in 1978. With an increasing emphasis on consumerism in health care, and the increasing popularity of complementary and alternative medicine (CAM), patient choice has become a more pressing issue.

The potential dilemmas inherent in patient-driven care were the basis for the colloquium held at Yale. The conference took shape after a 34-year-old man with a life-threatening cancer (multiple myeloma) presented to the Integrative Medicine Center at Griffin Hospital in Derby, CT, requesting high-dose intravenous vitamin C as an alternative to conventional chemotherapy. Griffin Hospital is a Planetree affiliate.

"The patient's request was uniquely challenging," says David L. Katz, MD, MPH, associate clinical professor of public health and medicine at Yale, and director of Griffin's Integrative Medicine Center. "He was well informed and rational, but we could not really endorse what he was requesting. So the question was: should we honor his request, or not? And if not, what did we mean when we talked about patient autonomy? Having this come up at the headquarters for Planetree made the dilemma that much more compelling."

After consideration by Griffin Hospital's Medical Executive Committee, the patient's request was declined, citing potential toxicity and the risks of taking the lid off of "Pandora's box." "The hospital decision was quite reasonable," said Katz, "but disturbing nonetheless. We seemed to be willing to let patients have autonomy, provided they asked for what we wanted to give them!"

The colloquium held at Yale was convened in an effort to generate some clarity and guidance for what is actually meant by "patient-driven" care. The day-long conference, moderated by Susan Frampton, PhD, executive director of Planetree, Inc, featured a series of presentations and culminated in a panel discussion, "town-hall" meeting, and vote for policy options. Dr. Frampton discussed the growing trend toward patient empowerment in healthcare today. Dr. Katz presented the patient case that inspired the conference.

Bernie Siegel, MD, emphasized the need for physicians to meet patients where they are in their disease process, considering the person rather than the diagnosis. Laura Gilpin, MFA, RN, Director of the Planetree Alliance continued the discussion on the importance of patient empowerment. Dr. Adam Perlman, Director of Integrative Medicine at the Saint Barnabas Health Care System in Livingston, NJ discussed the increasing role of complementary and alternative medicine in modern health care, and its relevance to patient choice.

Thomas Duffy, MD, Professor of Medicine and Director of the Program for the Humanities in Medicine, Yale University School of Medicine discussed patient autonomy in the doctor-patient relationship, suggesting that at times patients may need, and want, to turn over some autonomy to their physician. Steven Horowitz, MD, Chief of Cardiology at The Heart Institute at Beth Israel Medical Center, NY, discussed the evidence-based approach to treatment decisions in medicine. John Weeks, Principal and Co-Founder, Collaboration for Healthcare Renewal Foundation, discussed up-to-date information related to the motivations for hospitals and insurance plans to include patient-driven care practices. Julie Stone, MA LLB, lawyer and ethicist from The Royal London School of Medicine and Dentistry discussed patient autonomy and liability. Joining in the panel discussion at the end of the conference were Peggy Bia, MD, Professor of Medicine, Director of Clinical Education, Yale University School of Medicine; James Dillard, MD, DC, LAc, Director of CAM programs for Oxford Health Plans; and Christine Girard, ND, Naturopathic Doctor and Co-Director of the Integrative Medicine Center at Griffin Hospital.

"The day culminated with a very clear indication of a preferred policy option," said Dr. Frampton. "Our hope is that this one effort to capture public opinion will be repeated many times over. If enough people weigh in on this issue, it could translate into policies, procedures, and guidelines that improve the quality of health care. The colloquium highlighted the importance of patient empowerment in health-related decisions, but also suggested that people expect, accept, and even want patient and provider autonomy to be well balanced."

The colloquium can be viewed in its' entirety on video and is available for purchase through Planetree for $70 for the 6-hour set. For more information on purchasing the video, contact Planetree at 203-732-1365.