BETHESDA, MD. – Palliative care, once limited to the last days before death, is ripe for research and essential to improving patient quality of life, according to speakers at a summit sponsored by the National Institute of Nursing Research and National Institutes of Health partners.
Dr. Ira R. Byock
"We have to put the clinician back in the mix," Dr. Ira R. Byock, professor of anesthesiology and director of palliative medicine at Dartmouth Medical School in Hanover, N.H., said in the opening keynote address.
According to several speakers at the meeting, putting the clinician back in the mix may mean changing the thinking about palliative care from something that begins in the last days of life to something started as early as a patient’s first day of a cancer diagnosis, as well as making it easier for clinicians to explore palliative care strategies.
One route to improving palliative care is through rigorous research in both inpatient and outpatient settings to see what works, according to Dr. Jennifer S. Temel, clinical director of thoracic oncology at Massachusetts General Hospital in Boston.
Dr. Temel made the case for the value of palliative care research when she discussed her recent study of early palliative care for patients with advanced lung cancer (N. Engl. J. Med. 2010;363:733-42).
Chemotherapy can improve symptoms, "but the problem is that patients are trading off their cancer symptoms for chemotherapy-related symptoms (fatigue, nausea, neuropathy), so overall physical quality of life is not significantly changed," she said.
In a randomized, controlled trial of 151 adults with metastatic non–small cell lung cancer, patients who received palliative care soon after their diagnoses had significantly less depression and anxiety, compared with controls. Another significant finding: The median survival was longer among patients in the early palliative care group, compared with controls (11.6 months vs. 8.9 months; P = .02).
Patients with advanced illnesses suffer from both physical and psychological symptoms, Dr. Temel said.
Dr. Temel’s findings suggest that early palliative care can be used in conjunction with chemotherapy, and cancer patients could be managed jointly in an oncology and clinic setting. However, more research is needed to support and expand her findings.
To help promote and enhance additional research in the field of palliative care, Dr. Amy P. Abernethy, an oncologist at Duke University Medical Center in Durham, N.C., described the creation of the U.S. Palliative Care Research Cooperative (PCRC) group. Dr. Abernethy is the coprincipal investigator of the PCRC, which was established in 2010 and funded by the National Institute of Nursing Research. The PCRC is currently establishing research protocols and procedures through which palliative care researchers will be able to suggest topics and submit grant applications, said Dr. Abernethy. "We must focus our scope, choose studies carefully, and do them well," she said.
The need to engage patients and caregivers as partners in palliative care research was addressed in many talks, as was the need for better communication among clinicians, patients, and caregivers about palliative care. Dianne Gray, a parent advocate whose young son died of a rare genetic disease, spoke about the importance of communication between doctors and patients facing end-of-life issues and reminded clinicians that families want to work with doctors. But families also want honesty, even if the answer is "I don’t know," she emphasized.
In the summit’s closing keynote address, Dr. J. Randall Curtis, director of the Harborview/University of Washington End-of-Life Care Research Program, Seattle, discussed how changing attitudes toward palliative are getting clinicians back in the mix.
"Palliative care is much more broadly accepted as an important part of health care" in both inpatient and outpatient settings, he said in an interview.
Palliative care applies to all patients who face a life-limiting illness or a chronic illness that may shorten life, whether they are actively dying or only starting to manage an illness or think about end-of-life care, he said.
"Hospital-based physicians in particular have a very important role in providing palliative care," said Dr. Curtis. They have the opportunity to introduce discussions of palliative care when patients are hospitalized for exacerbation of symptoms, or when they are hospitalized in the last stages of life, he noted.
"I think there is a growing realization that all physicians caring for patients with life-limiting or life-threatening illnesses need to have basic palliative care skills," although specialists can and should be called in for difficult cases, Dr. Curtis said.
Dr. Temel said she had no financial conflicts to disclose. Dr. Curtis has received funding from the National Institutes of Health and the National Institute of Nursing Research. The summit was sponsored in part by the Foundation for the National Institutes of Health and by Pfizer.