Not long after their son died of a dog bite turned septic, his parents turned to their son’s physician, Randy Curtis, M.D., Res. ’91, ’92, MPH. Then a resident, Curtis had spent 20 desperate hours in the ICU, trying to save the young man’s life with one medical procedure after another. While Curtis updated the family periodically on progress, they were rarely allowed in the room.
The parents knew Curtis had done everything he could, and they were grateful. They also delivered another message. “What really haunted them was not having the opportunity to be at their son’s bedside,” Curtis says.
“That experience and experiences like it have really changed the way we provide intensive care,” he continues. And they also are at the core of the creation of the University of Washington Palliative Care Center of Excellence, a collaborative effort that includes several schools at the UW, including medicine, nursing, social work and public health.
Curtis, the director of the UW Palliative Care Center of Excellence (PCCE) and holder of the A. Bruce Montgomery-American Lung Association Endowed Chair in Pulmonary and Critical Care Medicine, is quick to point out that palliative care is more than end-of-life care. Rather, palliative care is specialized care for serious illnesses. This broader definition includes not only the dying, but also people facing the possibility of death — such as a car-crash victim in the ICU — and people who have chronic, life-limiting illnesses like emphysema or heart failure. Palliative care includes the psychological, social and spiritual dimensions of illness, as well as the physical.
What patients facing these types of illnesses need is clear communication; they and their families need to know their options. The choices are not always clear-cut, a by-product of the success of modern medicine. “Our ability to make medical advances has not been matched by our ability to help patients and families decide whether a therapy — given its benefits and burdens — is something that they want,” says Curtis. Aggressive treatments are not always in a patient’s best interests. Or even in their world view.
“We were always communicating about how she was doing and what needed to be changed. Without palliative care, I believe we could’ve lost her a lot sooner.”— Mark Shimada
“Culture becomes more important at critical junctures in our life — birth, puberty, marriage, serious illness and death,” says Ardith Doorenbos, Ph.D., R.N., FAAN. Doorenbos is a UW associate professor in the Department of Biobehavioral Nursing and Health Systems, with appointments in global health and anesthesiology.
Culture, however, is as variable as each individual patient. Doorenbos, co-director of the PCCE’s research core and a former hospice nurse, points to two recent patients: both men, both Hindu, both with terminal cancer and both being treated at the Seattle Cancer Care Alliance, a collaboration of UW Medicine, Fred Hutchinson Cancer Research Center and Seattle Children’s.
Despite the similarities in their circumstances, the men wanted very different care. One refused the technology related to life support because he wanted to die at home with religious observances. The second patient had a completely different view. “He thought the gods provided him with a wonderful doctor and a wonderful hospital,” Doorenbos says. This man took advantage of life-prolonging expertise, and he died in the hospital.
Both men wanted a dignified death. Both — because their caregivers listened to their needs — received one. This is the key to palliative care.
“We know that when doctors talk to patients or family members, they spend about 70 percent of the time talking and only 30 percent of the time listening,” says Curtis.
In palliative care, teaching physicians and other healthcare providers to listen more is crucial. The first issue, though, is simply being able to start a conversation about palliative care. “Families think the doctors should bring it up,” says Curtis. And the physicians, often uncomfortable about the topic, must steel themselves for these talks. The result is that the conversation can feel clipped, forced — sometimes even uncaring.
Part of the center’s mission is to educate physicians, nurses, other caregivers, patients and families about having these conversations. Doorenbos, for instance, teaches UW students from various disciplines — nursing, medicine, pharmacy, rehabilitation, dentistry, social work — how to conduct a family conference, talk about hospice care and address advanced care planning. It involves role play; it involves practicing.
“Communication is a skill, like driving,” says Curtis. “You can’t learn it by having someone lecture you about it.”
UW Medicine has a vision for the Palliative Care Center of Excellence — the integration of research, education and care so that every patient, wherever they enter the UW Medicine health system, has access to excellent palliative care.
What would this look like from a patient’s angle? Today, there are palliative care services at Harborview Medical Center and UW Medical Center, as well as at UW Medicine’s partner and affiliate institutions, including Seattle Children’s, Seattle Cancer Care Alliance and the VA. Curtis wants to go deeper, making sure that all caregivers throughout the system know how to provide basic palliative care — how to assess and treat symptoms, talk about values and quality of life, and ensure that patients and care teams have access to a clinician whose specialty is palliative care, if they need one.
In creating the center, Curtis and his colleagues are building on educational and research programs already in place in the UW School of Medicine, the UW School of Nursing, and elsewhere at the University. For instance, UW Medicine’s palliative care fellowship, which draws residents from internal medicine, pediatrics, family medicine, psychiatry and other specialties, provides a year’s immersion in palliative medicine.
“Communication is a skill, like driving.”— Randy Curtis, M.D., MPH
Research efforts are another priority, and these efforts have been under way for some time. For example, Curtis and his colleagues are combining research and training in a program called Code Talk, in which internal medicine residents and nurse practitioner students learn and practice skills — giving bad news, for instance — in a multi-day training. Initial results show that participants are learning and using important communication skills.
The program also will build on best practices established by programs like Harborview’s Outpatient Palliative and Supportive Medicine Service, a program that takes care of people like Kimiko “Pinky” Camara.
Pinky Camara had been ill for four years with chronic obstructive pulmonary disease (COPD) when her health took a turn for the worse in December 2011. She began hospice care, and her son, Mark Shimada, decided to stay home with her. He also decided to move his mother’s care, previously provided by a gerontologist, to Curtis. The difference in Curtis’ approach was crystal clear.
“Dr. Curtis was so much more forthcoming with some of the other options to provide quality care for my mom,” says Shimada. For instance, Curtis gave him the directive that asks patients to consider how they want to be cared for at the end of their lives. “The gerontologist never mentioned anything like that,” Shimada says.
When it became too difficult for his mother to visit Curtis at Harborview, Harborview came to her. Darrell Owens, DNP, MSN, is director of the medical center’s Outpatient Palliative and Supportive Medicine Service, and house calls like these are a large part of his practice. The service supports patients like Camara, who received hospice care, and patients at other points along the palliative care spectrum.
“The decision to provide medical management to people at home arose after it became obvious that patients were just too medically fragile to come to a clinic visit. Instead, they were going to the emergency department,” says Owens.
The at-home approach worked. “We were always communicating about how she was doing and what needed to be changed,” says Shimada. “Without palliative care, I believe we could’ve lost her a lot sooner.”
As the UW Palliative Care Center of Excellence develops, Curtis and his colleagues expect to accomplish a great deal, including developing working standards and best practices for healthcare providers in the UW Medicine system. They also will foster research — a pilot grant program is in the works, for example — and they plan to continue refining and integrating curricula across multiple schools, including more opportunities for students from different disciplines to learn together.
The end goal is that all UW Medicine patients receive the same kind of high-quality palliative care that Pinky Camara received: compassionate, respectful and patient-centered. Being part of this kind of care — this medical journey — is important not only for health professionals but also for patients’ families.
Near the end of Camara’s life, she had good days and agitated days. Some days she wouldn’t eat, or she couldn’t talk above a whisper, or she forgot who Shimada was. He came to terms with it. It was part of palliative care.
“I had to stop thinking in terms of ‘can’ and ‘can’t’ or ‘should’ and ‘shouldn’t,’” Shimada says. “I just had to meet my mother where she was.”