This article appears in Quarterly magazine.
Two of the world’s leading medical journals recently turned to the University of Wisconsin School of Medicine and Public Health’s (SMPH) palliative-care leaders to frame important end-of-life care issues.
Toby Campbell, MD, MSCI (PG ’04), went first, writing an editorial for the Journal of the American Medical Association in November 2015 about how his views have evolved as he has learned from patients. He explains that the “bucket list” approach to life’s end can exhaust everyone.
“Now I understand that fighting for a moment of ‘normal,’ for a minute that doesn’t matter, is relevant and valuable,’’ wrote Campbell, an SMPH assistant professor of medicine. “I’ve since handwritten a prescription for ‘a cancer-free weekend.’ (A clinician) could be more like a coach giving permission to call a time out, during life’s two-minute drill, for a moment of normal amidst the noise of a life at its end.”
His mentor, James Cleary, MD, an SMPH associate professor of medicine, was asked to write an editorial for The Lancet in February 2016, commenting on the fact that failed pain policies mean people across Asia and Africa continue to die in pain, unable to access drugs the World Health Organization considers essential.
James Cleary, MD is also on the Advisory Board for the University of Wisconsin Global Health Institute.
Palliative care barely existed at UW-Madison when Cleary arrived from Australia 22 years ago to research pain relief in cancer care at the UW Carbone Cancer Center (UWCCC).
“Dr. Paul Carbone asked me if I’d be interested in starting a palliative-care program,’’ says Cleary, who did so and became the program’s first clinical director. Having since grown into a team of six physicians, an advanced practice nurse, pharmacist, social worker, psychologist and chaplain, the Palliative Care Program provides inpatient and outpatient care for patients who have any serious disease, compared to some programs that focus solely on cancer.
Along the way, Cleary and Campbell — both UWCCC members — have trained the next generation of medical students, residents and fellows. Their core program for SMPH third-year students consistently ranks among the most highly rated courses.
Each year since 2009, UW Hospital and Clinics has used Campbell’s “WeTALK” program to train new residents to communicate with patients about serious illnesses. In 2014, the SMPH Department of Medicine employed WeTALK to train more than 600 faculty and staff members, and the school’s Department of Family Medicine and Community Health plans to do the same in 2016.
This year, Campbell and his team trained 29 acute care surgeons to use an innovative communication tool he designed with Gretchen Schwarze, MD, an associate professor in the SMPH’s Department of Surgery, Division of Vascular Surgery, called Best Case/Worst Case, for high-risk shared decision making. Campbell leads a “PalliTALK” workshop for palliative care fellows from across the nation.
“The UW is at the forefront of improving doctor-patient communications across the enterprise,’’ notes Cleary. “We have changed the way doctors talk to patients about serious illnesses.”
Still, the two physician-researchers agree that much more needs to be done. Campbell cites a recent New England Journal of Medicine study showing that a large majority of people with incurable cancer don’t understand that their disease will likely kill them. They’ve found similar numbers in research about their own cancer patients.
“Patients are told this news, but not in a way that registers,’’ Campbell says. “It’s because we speak in what I call ‘onco-babble,’ treatment-focused talk that often leaves no space for patients to grasp the meaning of the oncologist’s words about an incurable disease.”
Rather than rush into treatment discussions before their diagnosis has sunk in, Campbell has proposed a method that facilitates a prognosis discussion between providers and patients so they can work through the process with their physicians. He also researches whether such communication training makes a difference in patient care. His results suggest it does.
“Can you teach empathy?” Campbell asks. “Yes, you can teach people to see and respond skillfully to human suffering and distress. When we teach WeTALK workshops, the participants emerge able to communicate differently and more effectively compared to the day before.”
Increasing those the Palliative Care Program can train, in 2015, for the first time, it participated in the national match for fellows, filling all four of its fellowship slots. Campbell succeeded Cleary as the chief of palliative care in 2011, giving Cleary more time to focus on helping improve pain control in the United States and around the world.
Along with leading the Carbone Cancer Center’s Pain and Policy Studies Group and serving as a member of the UW-Madison Global Health Initiative, Cleary is a leader of the international Global Opioid Policy Initiative and a member of the Lancet Commission for Palliative Care and Pain Relief. He is concerned that a backlash to opioid addiction in the United States is leading to restricted access to that class of medication for people with cancer and other serious illnesses.
“Our goal is to ensure access to those who need opioids for medical purposes while reducing the risk of misuse and diversion,” Cleary explains.
Despite these concerns, public awareness about palliative care has never been more keen. Cleary and Campbell were featured in two documentaries, which aired on PBS, addressing communication at the end of life called “Consider the Conversation.” A third documentary is being planned. Additionally, the best-selling books Being Mortal, by Atul Gawande, MD, MPH, and When Breath Becomes Air, by Paul Kalanithi, MD, have increased public dialogue.
Cleary says he’s seen growing appreciation over two decades for the idea that health care must focus not only on living longer, but also on improving quality of life. Change is occurring, albeit slowly.
“It’s like being aboard the Titanic,’’ Cleary shares. “The crew in the helm, and even the people playing in the band, know we have to change direction. Unlike the Titanic, the ship is turning, but it takes time.”
By Susan Lampert Smith
Date Published: March 16, 2016