Sharing Stories and Goals for 2012

When AAHPM’s newest president, Timothy E. Quill, MD FACP FAAHPM, was a student at the University of Rochester Medical Center (URMC), he assisted a surgeon with a code on an elderly man with advanced lung cancer. The man weighed just 80 pounds and his death appeared to be inevitable, yet they futilely followed an aggressive code that included open heart massage. Even then, long before the field of hospice and palliative medicine had become a board-recognized subspecialty, it seemed that there had to be a better way.

Fortunately, he soon crossed paths with Arthur Schmale, MD, a physician whose training in medicine and psychiatry had helped him to find an alternative approach to caring for patients for whom aggressive treatments were no longer successful.

“He taught me you didn’t have to be dying or on hospice to have symptoms treated or have serious conversations about the implications of serious illness,” says Dr. Quill. “He would round on patients with advanced cancer who were receiving chemotherapy and simply talk with them and learn their stories.”

As a result of these experiences, Dr. Quill gravitated toward a career in hospice and palliative medicine, and he became one of the first hospice medical directors in the community. During the 1980s and 1990s, he worked as a community hospital–based primary care physician alongside his work in hospice. He taught medical students and residents in both of these domains and ran a fellowship that focused on biopsychosocial integration. In 2001 he transitioned his activities to the University of Rochester Medical Center (URMC) to start their Palliative Care Program, which has grown from a basic inpatient consultation service to a full-fledged clinical, educational, and research program during the past 10 years.

An AAHPM board member since 2007, Dr. Quill assumed the duties of president following the 2012 AAHPM & HPNA Annual Assembly. His thoughtful reflections on his career and work with patients, families, and colleagues demonstrate ample preparation for this new role.

Sharing Patient Stories As the director of the palliative care program at URMC, Dr. Quill meets with each resident midway through their palliative care rotation. Because he considers communal exchange to be so valuable, he asks each to share a story about a patient who left a lasting impression.

“In a way, I have made a career out of sharing patient stories,” he says. “Most of my lectures and workshops, as well as my papers, have been informed by patient experiences. Sharing these stories helps the learner know that even an experienced clinician struggles, and in the exploration that follows they learn how we collectively think about and react to these uncertainties.”

Perhaps no patient story has provoked more discussion than that of Diane, a 45-year-old patient Dr. Quill wrote about in the New England Journal of Medicine (NEJM) in 1991. Diane received a diagnosis of acute myelomonocytic leukemia, which had about a 25% rate of survival following a grueling course of treatment. Without treatment, death was certain. Not wishing to spend the remainder of her life in pain and in hospitals, Diane ultimately elected to not treat her disease. In the NEJM article, Dr. Quill recounted his initial struggle with her decision to refuse aggressive medical treatment, his eventual acceptance of her carefully thought-out reasoning, and her subsequent request to have an “escape” plan, if suffering became unbearable.

The article generated an outpouring of letters from colleagues, patients, and families that contained encouragement, support, and more thoughts on the case. “It taught me a lot about the power of storytelling as a way to help people feel less alone with their experiences, as well as the potential of clinical narratives to influence policy and change thinking,” he says.

Influencing Policy Known for his interests in ethical issues, Dr. Quill and a group of medical and legal colleagues challenged the constitutionality of New York State’s prohibition of physician-assisted death when he served as lead plaintiff in the landmark Quill v Vacco (1997) decision, heard by a US District Court and later the US Supreme Court. Although the Supreme Court voted 9-0 in favor of the State of New York, Dr. Quill says the case was successful in that it caused the court to formally recognize the value of palliative care in terminal patients, the concerns over accessibility of palliative care for all patients, and the potential need for palliative sedation, even to the point of unconsciousness, for the treatment of terminal suffering. “In retrospect, I think the justices’ decision found the right balance for the time,” he says.

Working with Patients, Families, and Colleagues Dr. Quill cites the opportunity to help seriously ill patients and their families as one of the most rewarding aspects of his work. When aggressive treatments fail to produce wished for results and curative treatment options are exhausted, it is often palliative care clinicians who are the last ones standing to help patients and families grapple with how best to move forward. It is this complex position that Dr. Quill finds so professionally challenging. “Although it can at times be messy and unsettling, there is something about joining patients and families at what is often a very critical time in their lives that really appeals to me both intellectually and emotionally.”

Leading the AAHPM Team As Dr. Quill’s term as AAHPM president begins, he’ll carry with him a rich career of experiences and diverse vignettes of patients who have inspired him to think differently. He believes that AAHPM’s advocacy efforts to include palliative care in healthcare reform remain one of its most important goals.

“There is growing consensus that one of the biggest challenges of healthcare reform is the costs attributable to the sickest patients—especially the costs attributable to treatments of no or marginal benefit,” he says. “This is why our demonstrated ability to improve quality of life, assist with difficult decision making, and decrease the overall costs of patient care make palliative care an obvious inclusion in the healthcare reform bill.”

In addition to healthcare reform, considering creative ways to attract new clinicians to the field, expanding the research base, and contemplating the benefits and burdens of separating hospice from palliative care remain key topics he hopes the Academy will continue to address.

Wherever the next year takes AAHPM, Dr. Quill will be ready. His term as president overlaps with a 10-month sabbatical, which will allow him the opportunity to fully participate in emerging AAHPM initiatives, as well as to recharge and spend more time with his wife (whom he met while he worked as a hospice medical director), three daughters (all of whom have found careers in medicine), grandson, and beloved English Cocker Spaniel, Ollie. Like most busy people, however, he isn’t one to sit idle for long; in fact, bicycling, running, and skiing are among his favorite activities, depending on which season it is in Rochester. During his sabbatical, he will be indulging his personal interests of traveling, cooking, and reading (fiction though—“too much reality in my day job!” he says), with plans to coedit a book with a colleague at the National Institutes of Health about the intersection between ethics and palliative care.

“I enjoy writing, and do much of that in my free time,” he says. “I have been lucky in my career to be able to write about the things that challenge and move me, which is probably why I view it as a hobby rather than part of my job.”