Yesterday, speakers opened Patient-Centered Oncology Care, sponsored by The American Journal of Managed Care, with a discussion of how to bring palliative care into the mainstream in cancer care. While progress has been made, a cultural bias against discussion end-of-life issue remains an obstacle.
The evidence shows that palliative care is better for patients, improves survival, and saves insurers money. So why has it been so hard for managed care to make it the norm when patients face a life-threatening illness?
There are many barriers—from a shortage of clinicians trained in palliative care, to America’s cultural bias against facing the fact that death is part of life. Those assessments came from a variety of stakeholders, who gathered for in Baltimore, Maryland, for Patient-Centered Oncology Care, sponsored by The American Journal of Managed Care.
On Thursday, attendees heard from a nurse educator, payer-physicians, and a patient whose choice to pursue palliative care has helped her defy the odds: she has lived 4 years with stage 4 inflammatory breast cancer. The consensus? When it works well, palliative care offers comfort to both patients and their families. A landmark study of lung cancer patients shows it can even extend life by several months. But speakers agreed that because conversations about not pursuing the most aggressive options are so difficult, they often don’t occur early enough, if they occur at all.
Marian Grant, RN, of the University of Maryland School of Nursing, opened with a basic point: the earlier conversations and palliative care start the better. She explained what is involved in the broad realm of palliative care, the range of services to relieve symptoms and pain and meet spiritual needs. Palliative care can occur alongside curative therapies or procedures, and it includes hospice, which is reserved for those expected to live less than 6 months. Patients at this stage may be asked to forego chemotherapy. Rules under the Affordable Care Act (ACA) allow pediatric patients to have curative and palliative care at the same time.
“When you talk to people about the full range of options, many people say I don’t want to spend my last days or weeks in the hospital,” Ms Grant said. “Palliative care and hospice allow them a way to do that.”
Both Ms Grant and Ira Klein, MD, MBA, FACP, senior medical director, National Accounts, Clinical Sales and Strategy at Aetna, discussed that insurer’s Compassionate Care program, which has made strides in offering better options for patients facing serious illness. Medicare Advantage patients enrolled in the program were 82% more likely to choose hospice, had 77% fewer days in the emergency department, and 86% fewer days in intensive care.
But Dr Klein said that payers generally still need to do a much better job of funding care in settings that patients prefer. Palliative care is better, he said, but “it is still applied extremely unsystematically.” Any time this happens, he said, there will not be best practices. The statistics show good news and bad news: there is 1 palliative medical doctor for every 1200 patients in need, Dr Klein said. But since 2008, there has been a 19% increase in palliative care teams, with 85% of hospitals with more than 300 beds having one. Both Dr Klein and Ms Grant said shortages occur in small rural or community hospitals.
Dr Klein said palliative care includes a greater focus on survivorship care, as more cancer patients live longer after initial treatment. “Cancer is becoming in many ways a chronic disease. Cancer patients go back to work; they lead productive lives.”
Employers, he said, are keenly interested in reducing the number of days these patients are on disability, since the new expectation is that patients will return to work.
In a panel discussion led by Jan Berger, MD, MJ, nurse and cancer patient Amy Berman, BS, RN, and physicians Bruce Feinberg, DO, of Cardinal Health Specialty Solutions, and Patti Forrest, MD, MBA of Blue Cross Blue Shield of North Carolina spoke of the cultural impediments to having honest conversations about end-of-life care. Dr Berger took the issue head-on by asking panelists what they would say to political leaders who used language like “death panels” to describe efforts to set standards for guiding such care.
Ms Berman, who has been living with stage 4 breast cancer, said 1 of the big challenges is “the notion that we don’t die…Death is simply a part of the life cycle, but we live in a denial mode.”
Later, in a session with attendees, Ms Berman described her treatment choices, in which she has rejected surgeries that most patients with her prognosis would have pursued. She has stayed active, traveled around the world, and enjoyed a full schedule. Ms Berman narrated how she recently had a single, large dose of radiation for pain instead of several smaller doses after reading recommendations from the Choosing Wisely campaign—a less invasive, less expensive option. “I made choices that were logical choices, but not the choices most people make or would even discuss,” she said.
With 75% of people unable to make some or all decisions at the end of life, failing to make an advance care directive guarantees that someone else will make them instead, and it may not be what patients want. Having the conversations about end-of-life care may make healthcare professionals uncomfortable, she said, “but so what?” What’s more important, she said, is to relieve the burden from one’s family.
Dr Feinberg said the shift will take more than training doctors or changing medical school curricula. “Culturally, we need to change,” he said. When 75% of adults over 65 years of age are not healthcare literate, physicians fear they will be unable to adequately educate their patients to help them make an informed decision, which Feinberg said is 1 reason so many conversations never happen.
Dr. Forest spoke of cultural fears, too; starting conversations about taking less aggressive options can raise fears among patients that payers are just trying to save money. “This has been part of what has held some organizations back,” she said.
“I would say ‘look at the evidence,’” about palliative care, she said. “Not only can quality of life be improved, but survival can be improved. It’s not about withholding care,” she said. “The more we educate people the better.”