Charles von Gunten, MD, PhD
“The data are in, and they are clear and convincing. Palliative care leads to better outcomes for patients. The major challenge now is to make it part of standard cancer care everywhere in the United States and then everywhere else in the world, said Charles von Gunten, MD, PhD, a medical oncologist and Vice President for Medical Affairs, Hospice, and Palliative Care, at OhioHealth; and Editor-in-Chief, Journal of Palliative Medicine. Dr. von Gunten discussed a number of topics related to palliative care delivery in his Keynote Address at JADPRO Live, the annual conference of the Advanced Practitioner Society for Hematology and Oncology.1
What Patients Want to Know
Members of the oncology team need “primary palliative care skills” the way they need any other basic medical skills, Dr. von Gunten told listeners. “You need to know the keys to patient-centered communication about diagnosis and prognosis,” he said. In essence, patients want to know what is wrong and what will happen to them.
Admittedly, he said, it is often easier to talk about diagnosis than prognosis, but both are important, along with the negotiation of goals of care, which change over time. He advised his audience to think of themselves as part of the patient’s family—agreeing on goals, appreciating that goals change over time as the disease changes, and always ensuring that symptoms are “impeccably controlled.”
Surveys of the families of patients who have died have shown that, among all the possible settings, hospice care provides the best end-of-life care and should be offered to all of these patients. Surveys have shown that patients are least likely to feel respected in nursing homes without hospice care involved and that pain relief may not be optimal when home health agencies alone provide care. Families of patients have also reported, ironically, that they feel the most need for more contact with their physicians when they are dying in a hospital. “How could it be that patients dying in the hospital want more physician contact when hospitals are crawling with doctors?” Dr. von Gunten commented.
Universally, the best ratings are for home hospice care, he said. “This is where twice as many families say that patients receive excellent care and have their core needs met” as in any other setting—and where the cost of care may be the lowest.
Addressing Fundamental Fallacies
Palliative care began as a way to better manage patients who were dying, but that was perceived as the end of the cancer journey. Patients were either in “curative land,” where a “fight mentality” is applauded, or were “pitched over the wall into comfort care land,” as he described it. This either/or model can be subliminal. Even health-care professionals sometimes verbalize, “Is he palliative yet? Ready to stop treatment?” If providers still harbor this model, no wonder patients say they are “not ready for palliative care,” Dr. von Gunten said. When patients refuse to consider palliative care, providers often comply, but the absolute wrong thing to do, he said, is to humor patients and agree never to raise the idea again.
Patients may be remembering others who entered hospice care and soon died. “They died in 3 days because they were referred so late,” he said. “Patients have the illusion that if they just keep fighting they will live longer.”
The data are so clear that people live longer when they receive palliative care, whether it’s organized by a team in a hospital or a hospice program and delivered at home.— Charles von Gunten, MD, PhD
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Sometimes, patients just need to know the “data that rocked the oncology world,” the article by Temel et al in metastatic non–small cell lung cancer.2 This landmark trial documented that patients receiving palliative care from the time of diagnosis lived an average of 3 months longer than those receiving standard care, with less chemotherapy and better quality of life. The Kaplan-Meier curve from this study mirrors that of a blockbuster drug. “If palliative care were a drug in this study, it would sell billions,” he said.
“The data are so clear that people live longer when they receive palliative care, whether it’s organized by a team in a hospital or a hospice program and delivered at home. We’ve got to address these fundamental fallacies in thinking or we won’t move forward,” Dr. von Gunten emphasized.
Making palliative care available to all who need it, whenever they need it, means instituting it from the time of diagnosis through the cancer course. In this model, hospice care becomes the completion of good cancer care. “This should be your mental model,” he said. “If it’s not, you won’t be able to transmit the concept to the patients and families who need it.”
Team Work: Who Brings What to the Table
The palliative care team ideally involves oncologists, nurses, advanced practitioners, social workers, pharmacists, and chaplains. These individuals provide complementary services and strengths.
Speaking to an audience of advanced practitioners, Dr. von Gunten espoused: “Both physicians and nurses are taught to assess facts. However, physicians are taught that feelings are not facts—they will lead to errors—whereas nurses are taught that feelings are ‘additional facts.’ That’s why nurses can be better advocates for patients. They use what they know and feel about patients to advocate for them.”
This means using unique skills to explain what palliative care really is and is not. It does not mean death is imminent or that hospice is being called. It does mean taking advantage of a system of care that also includes pain management, moral support, and a listening ear.
Developing a hospital palliative care program may mean jumping some hurdles, he noted, but a work force shortage should not be one of them. “I’m in charge of palliative care for 11 hospitals, serving a population of 3.5 million people across 20 counties. We started with 4 physicians and 7 advanced practitioners; in 2018, we have 28 physicians, 23 advanced practitioners, and 13 open positions,” he said. “Yes, it’s hard to convince some people, but if you don’t have a vision, you can’t pull people with you. The vision comes first and then perseverance.” ■
DISCLOSURE: Dr. von Gunten reported no conflicts of interest.
2. Temel JS, Greer JA, Muzikansky A, et al: Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363:733-742, 2010.