Growing Pains: Palliative Care Making Gains
At Virginia Commonwealth University (VCU) Medical Center, some third-year residents and nurses are taking part in something new: mindfulness training. Incorporating aspects of meditation, the 3-month pilot training program is meant to help them better deal with patients approaching the end of life.
“We are teaching these practices to increase clinicians’ awareness of the emotional dimensions of end-of-life care,” explained the program’s leader, Dr. Amy Sullivan, from the school’s Department of Social and Behavioral Health. “Our aim is to enhance clinicians’ ability to respond to patient and family psychosocial needs at a very vulnerable time.”
—Dr. Diane Meier
The goal, in part, added Dr. Thomas Smith, an oncologist and leader in the palliative care program at VCU’s Massey Cancer Center, is to improve communication between doctor and patient. “On average, doctors give patients about 17 seconds before they interrupt them,” Dr. Smith said.
Improving communication is important. Studies have linked poor doctor/patient communication with inferior outcomes and more aggressive care at the end of life.
The existence of such a training program is one small step in the evolution of palliative care. The growth and changes in palliative care are particularly significant for oncology, where an aging population and a corresponding increase in cancer incidence are expected to expand the need for palliative services. Now a recognized medical subspecialty whose value and importance have been endorsed by the Institute of Medicine and World Health Organization, palliative care has been shown to improve patient outcomes such as symptoms and quality of life, as well as patient and family satisfaction with care. The largest study of its kind, published in 2008, also demonstrated it can lead to significant cost savings by, among other things, decreasing intensive care unit visits.
Even with these data and recognition, the availability and role of palliative care varies tremendously from hospital to hospital, and funding for palliative care programs at institutions large and small is still limited, explained Dr. Diane Meier, director of the Center to Advance Palliative Care (CAPC) at Mt. Sinai Medical Center in New York. Even so, she continued, the field of palliative care has grown tremendously in the past decade. And with that growth come high hopes.
“Our goal is that all patients newly diagnosed with serious cancer will be seen simultaneously by the treating oncologist and a palliative care interdisciplinary team,” Dr. Meier said. “Helping them get through diagnosis, the consequences of their disease, and the side effects of treatment with as good a quality of life as possible. That’s the simultaneous-care concept that will be palliative care at its best and most appropriate form. But it will take time to get there.”
Clearing Up Misconceptions
Although there are a number of barriers that have limited the penetration of palliative care into medical practice, perhaps the biggest, said Dr. Ann O’Mara, the head of palliative care research in NCI’s Division of Cancer Prevention, is that palliative care is still often strictly equated with hospice and end-of-life care. A 5-year review of patients seen by the palliative care consult service at the Mayo Clinic, for example, found that although overall referrals for palliative care consultations had increased, the time between when patients with cancer were referred for their consultation and their death had shrunk two fold, from 33 days to 11.5 days. This left a little more than 2 days, the study authors noted, to develop a comprehensive palliative care plan.
Breaking through this misconception is plagued by numerous factors, those in the field report. Lack of training in medical schools is one, although studies suggest that is getting better. Others include the shrinking minutes oncologists have during patient appointments, as well as reimbursement issues.
Limited communication is another factor. “It can depend on how good the palliative care consult team is at educating the staff of oncologists and residents and fellows, letting them know that, ‘We’re here to help you manage the patients with difficult symptoms or difficult issues,’” Dr. O’Mara said. “Those patients may have a good prognosis but may also have an array of symptoms or psychological or spiritual issues, which the palliative care consult service is in a much better position to address.”
Turning the Tide
Even here, Dr. Meier stressed, the ground is shifting in palliative care’s favor. Acceptance among oncologists and other treating clinicians of palliative care’s value has never been greater, she said. And despite the Mayo Clinic data, “the national trend is that palliative care consultations are occurring earlier and earlier in the course of illness.”
At centers like VCU and Mt. Sinai, which have been at the forefront of palliative care for more than a decade, inroads with medical staff have been well laid and are paying off.
Four oncologists at VCU, including Dr. Smith, are board certified in hospice or palliative care. Palliative consultations are “pretty much integrated into much of our [oncology care],” he said. “When we first started, we were only called near the end of life, often as a pre-hospice referral. …Now we often care for those who are made very ill by their treatment or disease and for the actively dying while in the hospital.”
Nevertheless, said Dr. Meier, there is a learning curve among oncologists that influences the extent to which palliative care is offered to patients. Part of that is related to the fact that palliative care programs are operated as a consulting service.
“Our goals as consultants are framed by what the referring oncologist asks us to get involved in,” she said. If they are called for a consultation, the palliative care team—an interdisciplinary group that can include nurse practitioners, psychologists, social workers, massage therapists, and others—will meet with the patient and make recommendations to their treating oncologists.
Ensuring that palliative care staff don’t overstep their role as consultants is critical, stressed Dr. John Cowan, an oncologist who directs the palliative care program at Blount Memorial Hospital, a community hospital approximately 20 miles from Knoxville, TN.
“We want the [treating] physicians involved” in the discussions about patients needs for palliative care and the options open to them, Dr. Cowan said. “If they’re not interested, they’re probably not going to follow through on our recommendations.”
As has been the case at the larger academic medical centers, the palliative care program at Blount Memorial has grown considerably since its inception in 2000. The palliative care team is now more involved in care delivery, but has still struggled to become an ingrained part of the care process “further upstream,” Dr. Cowan acknowledged.
Part of that struggle—and something that available evidence suggests is a somewhat universal issue—can be traced back to the patients, who often can be resistant to discussions that veer from those about eliminating their disease. “The patients are staying focused on getting their disease treated and they tend to minimize their symptoms or other problems,” Dr. Cowan said.
Patients may also avoid discussing issues like pain and other symptoms, Dr. O’Mara added, out of fear that any changes might represent worsening disease or result in changes to their therapy.
In addition to ongoing research aimed at further delineating the value and improving the conduct of palliative care, CAPC and other groups are also addressing key impediments to the growth of the field, such as securing more training slots and palliative care faculty at medical schools.
There is both a quality of care and business case to be made for palliative care, Dr. Meier believes, and changes could be made to help bring the field along. “I’m hoping to see more cancer centers and hospitals and oncology treatment groups bring palliative care professionals on to their own staff,” she said. This way “they don’t have to go to a phone to get a consult. Palliative care will just be part of the core services they offer.”