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
We have the tool at hand to potentially prevent 600,000 cases of cancer a year, says the head of the University of Wisconsin Carbone Cancer Center, in a policy statement published today urging a renewed effort to increase rates of vaccination against the human papillomavirus (HPV).
Dr. Howard Bailey recently chaired the American Society of Clinical Oncology’s (ASCO) cancer prevention committee, and is the lead author of a policy statement published this week in the Journal of Clinical Oncology.
“We are obligated to promote underused interventions that have the potential to save millions of lives through cancer prevention,” Bailey writes, in today’s statement. “Vaccinations against cancer-causing infections are such an intervention.”
Viruses cause about 1 million cases per year of cancer worldwide, and the HPV virus is responsible for about 600,000 of those cases. HPV causes cervical cancer, which kills about 266,000 women each year, most of them in the developing world. In the United States, HPV is also responsible for 60 percent of oral and neck cancers, 91 percent of anal cancers, 69 percent of vulvar cancers and 63 percent of penile cancers.
Despite the cancer-fighting power of the HPV vaccine, the United States has very low rates of vaccination. Only 36 percent of girls and 14 percent of boys ages 11 to 13 have had all three doses of the vaccine.
“The narrative regarding the HPV vaccine has been different from those for most adolescent vaccines. Rather than focusing on the life-threatening illness prevented, the focus has been on the behavior associated with infection (sexual activity),” Bailey writes. “This has led to misplaced parental attitudes toward, and understanding of, the vaccine. Studies have shown that parents do not understand the importance of the HPV vaccine or its impact on cancer prevention.”
The ASCO group chaired by Bailey hopes to increase HPV vaccination rates to the goal of 80 percent set by the Centers for Disease Control and Prevention. To do this, they propose:
– Better education of health care providers and the public about the cancer-prevention goals of the vaccine.
– Better clinical management, including using electronic medical records for reminders and followups; culturally relevant outreach to under-vaccinated groups; and bundling HPV with other vaccinations recommended for adolescents.
– Better access to low-cost vaccines, including lower out-of-pocket costs and delivery systems that could include school-based vaccinations.
– More research on HPV vaccine effectiveness and safety, including research on best practices to increase vaccination rates.
– More advocacy from oncologists in explaining the importance of HPV vaccination to their patients and the public.
“Although most oncologists will not be direct providers of these preventive measures, this does not abrogate us from contributing to this process. Our unassailable role in the mission to lessen the burden of cancer for our patients, their families, and our communities places us in a position of influence,” Bailey writes.
“We should use interactions with our patients, primary care colleagues, and health care systems to raise awareness of HPV-related cancers and the role of vaccination in preventing them.”
Some communities in Ecuador face high incidences of water-borne illness because of contaminated water or poor hygiene and sanitation. It’s a multipronged problem calling for an interdisciplinary approach combining natural, medical and social sciences. Bret Shaw, a CALS professor of life sciences communication, last year helped implement a social science approach with funding from the UW–Madison Global Health Institute.
“I used a social marketing perspective, which utilizes psychological and communication tools, to try to help villagers make lasting behavior changes in how they interact with water and sanitation,” explains Shaw.
Shaw worked with two undergraduates, Lauren Feierstein and Brenna O’Halloran, to create health behavioral prompts—small signs in Spanish left in important areas where a reminder to wash hands is vital, such as in bathrooms, near sinks and on bottles of water. Since many people in the community have limited literacy, it was important for the prompts to use images and very few words.
While the concept can seem intuitive, years of research show that the most effective prompts focus on self-efficacy—showing individuals how easy a behavior is—and making sure that the people in the graphic are relatable to the target population. The images and words Shaw’s team used were as specific as possible, showing an individual washing his or her hands with just a simple phrase underneath.
“Understanding the perspectives on why someone wouldn’t do something such as boil their water or wash their hands was very important,” says Feierstein, who also worked with residents on making and distributing organic soap. “Knowing those barriers was crucial to addressing the issue from all angles.”
The project was an extension of a course called “Water for Life Sustainability and Health,” a partnership between the Madison-based Ceiba Foundation for Tropical Conservation and the Global Health Institute. The course is led by Catherine Woodward, a faculty associate with UW–Madison’s Institute for Biology Education and president of the Ceiba Foundation. Shaw was brought in to offer guidance about how social marketing strategies can encourage healthy behavior.
“I’m a biologist and most of the people we work with are biologists, so having a communications person on board was a critical part of getting the message out,” says Woodward. “And not just about the message and having people understand why it’s a good idea to conserve natural resources—but also to actually get them to change their behavior.”
This post was written by Kaine Korzekwa and first appeared in CALS GROW Magazine in the Spring 2016 issue.