Monday, July 10, 2017

Oral history: Susan Tolle, M.D.

By Rachel Fellman

Susan Tolle photograph
Dr. Susan Tolle (courtesy of the Center for Ethics)
Another of our new oral history interviews is with Dr. Susan Tolle, director of the Center for Ethics in Health Care. Dr. Tolle is a founding member of the Center for Ethics and has spent much of her career fighting for improved end-of-life care for Oregonians.

An internist and longtime OHSU faculty member, Dr. Tolle had a formative experience early in her career here. It was her first shift as an attending physician. She was conscious of the fact that she was younger than all of her students, partly due to an unusual undergraduate experience – she had finished in just under three years to save more of the household budget for her younger siblings. Because of her youth and drive, she pushed herself to be the ideal faculty member, “trying to look older and be the attending and study very hard at night and work very hard.”

Just before this first shift, a patient in her late twenties was admitted and seen by an intern. Dr. Tolle took over at midnight, and at five in the morning, the patient was found dead. She’d had a benign tumor that had bled out internally, but nobody knew it that night, and in the meantime, Dr. Tolle found herself concerned by the way the hospital handled the matter. “Handing [the patient’s husband] a bag of pink plastic belongings. Being told at the time with legal, we don’t know what happened, don’t share information. Having the intern leave medicine. She was so worried that she had made a mistake, and permanently left medicine.” The hospital didn’t follow up with the family or offer adequate emotional support for the staff, and the only real discussion of the case came in the form of a lawsuit.

The experience led to a lifelong interest in ethics. Soon, Dr. Tolle and Dr. John Benson began a major study about end-of-life care. They contacted the families of patients who had died, and asked what the hospital had done well and where they'd fallen short. The families, they found, complained “much more often about how their loved one received too much care than that their loved one received too little care.” (This was in the 1980s, when patients were much more likely to die in the hospital rather than in hospice or at home.) Some family members had asked the doctors to stop treatment, to spare their loved ones pain, and had felt a deep sense of anguish and inner conflict. Often, they felt like “murderers,” and the experience left them scarred. Poor communication from doctors was a problem too – the families would get good news from some specialists and bad news from others. Dr. Tolle and her team recognized that clarity was especially important: “Good ethics relies on good facts.”

In 1989, Dr. Tolle and her colleagues founded the Center for Ethics. Her salary was initially cobbled together from grants, small budgets from the various medical schools, and private philanthropy – but not private philanthropy as it’s usually pictured. This was a grassroots project, and funding often came from those family members of terminal patients who’d had traumatizing experiences with their loved ones’ end-of-life-care. One professorship, the Miles J. Edwards Chair in Professionalism and Comfort Care, was endowed by 322 people. This unusually strong, democratic connection to their donors gave the Center a mandate to work on a broad range of questions.

Their flagship program has been the POLST form (Physician Orders for Life-Sustaining Treatment), which they began developing in 1991. It’s now used in 47 states to give very sick patients control over their own end-of-life care: they can opt in and out of CPR, intensive life-saving measures, and artificially administered nutrition. This lets the patients decide the big questions – life and quality of life – before the crisis comes. The Center remains very focused on updating the form, educating the public about it through dramatized documentary videos, and making sure that it’s used correctly and sparingly. They also teach within OHSU, most recently with a course called Living With a Life-Threatening Illness, in which the students meet six times with a “patient-teacher,” a seriously ill person who can help them understand the practical and emotional consequences of illness. The class is intense and mutually therapeutic, and the student’s goodbye letter is often read at the patient’s funeral.

As usual, there’s much more in the oral history than I could ever fit into this post. Medical ethics is such a rich and complex topic, and Dr. Tolle has played an active part in its evolution. Over more than twenty-five years, the Center has helped to take medicine from an unintentionally chilly and bureaucratic place to a much more immediate, conscious, and empathetic one. If you’re interested, you can explore the entire interview here.