What is the biggest misconception on palliative care? If you ask any palliative care specialist, you are likely to hear the same answer: Palliative care is only for patients nearly at the end of life.
Although that misconception is shrinking among both clinicians and patients, there is a long way to go to broaden access to supportive care that can minimize symptoms and boost quality of life. Many clinical trials have shown the benefits of adding palliative care in conjunction with potentially curative therapies.
“The tension for a cancer center to emphasize palliative care is profound,” said Kathleen M. Foley, M.D., a neurologist at the Memorial Sloan–Kettering Cancer Center in New York who specializes in pain management and palliative care. “A cancer center wants to be a cure center and to receive research funding for curative therapies. But my stance has always been that we can do both. Because the combination of potentially curative care together with alleviating symptoms and addressing a patient’s quality of life—that is the best cancer care. Step by step, we are learning that we can care and cure at the same time.”
Jennifer S. Temel, M.D., of the Massachusetts General Hospital in Boston, and colleagues carried out a keystone randomized study in metastatic lung cancer patients. Patients who received palliative care in addition to chemotherapy had better quality of life and were less likely to be depressed and to receive aggressive treatment in the last few weeks of life (N. Engl. J. Med. 2010;363:733–42). Most important, patients randomized to palliative care lived longer, with a median overall survival of 11.6 months, compared with 8.9 months in the standard therapy arm (P = 0.02).
Other studies have since supported the increase in patients’ quality of life, decrease in distress, and boost in survival, thanks to palliative care and attention to patients’ psychological needs (J. Clin. Oncol. 2015;33(suppl. 29S; abstr. 130); J. Clin. Oncol. 2015;33:1438–45).
“I don’t think the average oncologist can ignore the positive data on palliative care,” said Thomas J. Smith, M.D., director of palliative medicine at the Sidney Kimmel Comprehensive Cancer Center in Baltimore. “That is like saying, ‘I will wait for the fifth large [trastuzumab] trial to be positive before I use this drug.”
Timothy Moynihan, M.D., an oncologist at the Mayo Clinic in Rochester, Minn., and medical director of Mayo Clinic Hospice, agreed. “Some still think that accepting hospice and palliative care is giving up hope. But what palliative care does is to ask patients what it is they hope for,” he said.
Starting in the late 1980s and early 1990s in the U.S., researchers generally recognized that greater attention needed to be paid to patients with advanced, serious illness, including cancer, Foley said. “What has happened since is that palliative care has become more important and we have gone from a society where no one wanted to talk about dying, to now, much more open consideration.”
In Being Mortal, Atul Gawande, M.D., M.P.H, a surgeon at the Brigham and Women’s Hospital in Boston and professor in the department of health policy and managenet at Harvard writes about clinicians’ struggle to address death candidly with their patients and address their needs.
“This book, by a surgeon who acknowledges that he was not good at talking about these hard topics with his patients, has captured the public’s attention,” Foley said. “It is about people taking back control of their illness and end of life. We are more ready to face these issues now, but there needed to be this growing movement of care for those seriously ill.”
Timothy Moynihan, M.D.
Difficult Conversation
On the basis of his difficulties in discussing prognoses and advanced care planning with his patients, Gawande, executive director of Boston-based Ariadne Labs, spearheaded the Serious Illness Care program. That program is a joint center of Brigham and Women’s Hospital and the Harvard T.H. Chan School of Public Health.
“The major unaddressed need of patients with serious illness is having the opportunity to talk with a doctor they trust about what matters most to them,” Gawande said. “When I encountered patients for whom little or nothing could be done to cure their cancer, I resorted to explaining options rather than exploring with patients the values and goals that were more likely to guide us in making decisions together. Cancer patients, in particular, are more likely to feel that they are facing mortality, which creates anxieties and fears that we need to do a better job exploring earlier so patients have time to prepare, make informed decisions, and fulfill their wishes.”
To develop a blueprint for these difficult conversations between seriously ill cancer patients and non–palliative-care physicians, researchers at Ariadne Labs applied a checklist approach. Most oncologists lack formal training in palliative care or serious illness communication. The goal is for them to benefit from a systematic approach to having patient-centered conversations. These conversations need to keep patients’ goals and values at the fore, in ways that lead to the delivery of goal-concordant care, according to Justin J. Sanders, M.D. Sanders specializes in palliative care at the Dana–Farber Cancer institute in Boston and is a research fellow at Ariadne Labs. “What we want to make clear is that just training clinicians is not enough. We need a systems-based approach to improve palliative care in the right way.”
The rubric includes seven components:
Identifying patients at risk of dying within 1 year
Offering patients materials to prepare for the dialogue
Physician training
Prompting the physician to have the conversation at the appropriate time
Having the conversation with patients about the future
Documenting the conversation in a place accessible at multiple points of care
Offering patients tools to carry on the conversation with family at home
“The conversation guide helps clinicians introduce the topic in a nonthreatening way, emphasizing the process of preparing,” Sanders said.
The discussion is framed not for immediate decision-making—which can increase patients’ anxiety—but rather as an ongoing process for patients to think about to put themselves at ease. The conversation itself is framed as eight questions, which include how much information a patient wants about his illness and prognosis, what the patient would like his family and doctors to address with him, and the patient’s biggest fears about his illness. A recently added question: “What gives you strength as you think about the future and your illness?” Designed to pull the importance of family, friends, and spirituality into the conversation, that question was added after Sanders led a focus group study in South Carolina. That study explored barriers to appropriate primary palliative care for black Americans, who are less likely to receive care in line with their goals and values (J. Clin. Oncol. 2015;33(suppl. 29S; abstr. 11)). The approach has been implemented in Boston and is being expanded both across the U.S. and internationally.
“The idea is a scalable solution that can reach millions of people,” Sanders said.
“It’s been tremendously gratifying to hear from so many clinicians how much the guide has helped to deepen their relationships with patients in ways they hadn’t anticipated. I certainly found that for myself,” Gawande said.
Primary Palliative Care: The Oncologist’s Role
For their part, oncologists at Johns Hopkins in Baltimore, Md., use a temporary tattoo for clinicians to attach to their forearm that lists the critical questions to ask patients. According to Smith, when a patient has about 1 year to live is a reasonable time to have the conversation.
“That is the patient an oncologists needs to carve out extra time for, to begin advanced care planning,” Smith said. “Then, the conversation should be revisited before every additional line of therapy.”
Most hospitals offer some form of palliative care from specialized clinicians, according to Smith.
“Every medical oncologist should have a specialized palliative team they work with, just as there are radiation oncology and surgical oncology teams,” Smith said.
But as the elderly population grows, fewer palliative care specialists are available, making primary palliative care an oncologist’s responsibility.
“We are not likely to get specialized palliative care into every single oncology practice,” said Kathleen Bickel, M.D., M.Phil., assistant professor of medicine at the White River Junction Veteran Affairs Medical Center and Geisel School of Medicine at Dartmouth in Hanover N.H. Bickel and colleagues presented a guidance statement at the 2015 Palliative Care in Oncology Symposium from the American Society of Clinical Oncology—the first formal, consensus-based recommendations for primary palliative care in oncology (J. Clin. Oncol. 2015;33(suppl. 29S; abstr. 108)).
“Many of the items to address are things oncologists are already doing as part of their normal duties, and not necessarily labeling it as palliative care,” Bickel said. The guidance includes symptom management, communication, and advance care planning. It was developed by asking a panel of oncology caretakers including physicians, social workers, and nurses to rank 966 palliative care services by importance, feasibility, and whether the service was within the scope of medical oncology.
Integrating Palliative Care
Palliation is also being combined with general oncology services. At the Mount Sinai Medical Center in New York, Kavita Dharmarajan, M.D., assistant professor of radiation oncology and palliative medicine, started a palliative radiation service after her experience as a resident as part of a radiation oncology team.
“We were not taking into account that the patient may be a single mom with kids and is affected by extra time at the hospital and may not even be benefiting from the radiation therapy. I wanted to change that culture,” Dharmarajan said.
Since the service model was implemented in 2013, the approach has shrunk the duration of radiation treatment and decreased the median stay in the hospital from 18 to 12 days (J. Clin. Oncol. 2015;33(suppl. 29S; abstr. 110)). The service has also brought palliative care services for patients to the forefront. Dharmarajan is now assessing the service’s cost savings. The new program, one of only several in the U.S., is an example of putting the focus back on the whole patient.
“Medicine has made huge advancements on the organ and tissue level. But there is a price we have paid for that,” Moynihan said. “The palliative care movement is aligning our treatments and care with the bigger picture of the patient as a person.”
