Take away the pain
Palliative care makes progress, but barriers still exist
Although the field of palliative care has made significant progress over the past decade, the type and extent of services available to patients with cancer vary widely, experts agree.
“There has been tremendous growth in the number of hospital-based palliative care services and significant progress in medical education, and we're beginning to have more good-quality research to inform the way we care for patients,” says Susan Block, MD, chair of the department of psychosocial oncology and palliative care at Dana-Farber Cancer Institute in Boston, Massachusetts, “but we still have a long way to go:' Recent advances in the field include1:
There are now more than 10 specialty journals focused on palliative care and cancer.
Although the American Society of Clinical Oncology (ASCO) has not yet advocated for palliative care to be a component of oncology fellowship training, its yearly in-training examination for oncology fellows includes questions regarding palliative care.
A range of new oncology drugs and therapies aimed at symptom control have come to market over the past decade. However, less than 3% of all National Institutes of Health funding has been directed toward palliative care research.
Researchers at The University of Texas M.D. Anderson Cancer Center (MDACC) in Houston recently examined the status of palliative care through a survey of executives and program leaders of US cancer centers.2 The researchers found that National Cancer Institute cancer centers were significantly more likely than others to have:
A palliative care program (98% vs 78%);
At least 1 palliative care physician (92% vs 74%);
An inpatient palliative care consultation team (92% vs 56%); and
An outpatient palliative care clinic (59% vs 22%). Only 23% of surveyed centers had dedicated palliative care beds, whereas 37% had an institution-operated hospice. In addition, research programs, palliative care fellowships, and mandatory rotations for oncology fellows were uncommon.
Concept of Palliative Care Evolving
Palliative care focuses on the alleviation of suffering (ranging from physical to emotional issues) and on helping patients to realize their full potential whether their cancer is curable or the end of life is near, experts note. The model of cancer care is no longer one of cure versus comfort, but one of symptom control and psychosocial support during all phases of care, according to a recently published article byASCO.3
The majority ofAmericans do not have access to “good, high-level palliative care:' says Eduardo Bruera, MD, professor and chair of the department of palliative care and rehabilitation medicine at MDACC, whose colleague, David Hui, MD, was the lead author of the palliative care survey.2 “We are the only medical center with a comprehensive palliative care program in Texas' Dr. Bruera says.” We need to make oncologists and cancer center directors more aware of what palliative care can do:' A 1-month, mandatory palliative care rotation for medical fellows is essential, but center directors also should be intensively educated because, “physicians can't refer to a program that doesn't exist;' he adds.
Palliative care has become a subspecialty and physicians have developed better ways of treating and assessing both the physical and psychosocial problems experienced by cancer patients. At the same time, the palliative care discussion is being introduced much earlier in the course of the cancer patient's illness. “Palliative care used to be overwhelmingly in the inpatient setting, but now we work hand in hand with cancer specialists in combined inpatient and outpatient settings,” Dr. Bruera says.
One of the challenges has been educating oncologists that providing palliative care to cancer patients does not mean giving up hope. “it's not an act of hopelessness to have a Plan B, to say these palliative care specialists arc here if you need them to help you feel better,' Dr. Bnscra explains.” It doesn't get in the way of active cancer therapy or put patients in the terrible position of having to choose on or the other It simply decreases the burden of illness on patients and their families.”
Because oncologists and patients often have difficulty with the term “palliative care,” MD ACC's outpatient center is called the “Supportive Care Center.” Physicians and nurses have no problem referring cancer patients with good prognoses to the center, particularly if they are not feeling well.
Financial and Implementation Challenges
It's clear that providing palliative care “on the cheap” with a nurse or halftime chaplain won't make a difference, but a comprehensive, physician-run program will.
Eduardo Bruera, MD
Studies have shown that when the palliative care team becomes involved early in a patient's illness, they can dramatically reduce the costs of care in areas such as unnecessary hospital admissions. They also can improve quality of the, and in some cases have resulted in a small but consistent prolongation of life.
In the past, getting centers to adopt comprehensive palliative care programs that save money versus bring in revenue has been a challange, but that is likely to change under the current healthcare reimbursement climate, Dr Bruera says. “It's clear that providing palliative care ‘on the cheap’ with a nurse or half-time chaplain won't make a difference, but a comprehensive, physician-run program will.” Although research has demonstrated the effectiveness of these types of programs, staffing them is difficult, notes Dr Block. “We're in a work force crisis,” she says. “We need public policy changes and financial incentives to get people to go into the field as well as more education and loan forgiveness programs.” She also believes the cancer establishment should recognize that quality of care for cancer patients and the availability of palliative care are inter- linked and that leaders should more forcibly advocate for public policy changes that support the field.
Oncologists are beginning to recognize that more chemotherapy is not always the answer for patients. Instead, they are realizing that palliative care focused on quality of life and improving symptoms such as depression and intense physical problems may enable patients to live better and possibly longer, Dr. Block adds. “Finding something to improve quality of life and survival while also possibly limiting costs is a pretty attractive package,” she says.
She cautions, however, that palliative care is time consuming, and the financial model is not always easy to implement in a freestanding outpatient practice. Nevertheless, she and others agree that integrating palliative care into the outpatient setting is what needs to be done, along with identifying patients in disease areas ranging from cancer to cardiology who would most benefit from this type of care.
Paul Glare, MD, chief of the pain and palliative care service at Memorial Sloan-Kettering Cancer Center in NewYork City, is attempting to do just that on a small scale with a subset of patients at the center through a grant from the Mayday Fund.
“We're trying to identify which patients have more complex needs and which ones have needs that can be met by their primary oncologist,” Dr. Glare says. He gives the example of a breast cancer patient with bone metastases whose pain is well controlled. That patient can be managed by her oncologist. However, if her pain increases or side effects make her unable to tolerate the pain medication, the palliative care team would become involved.
Likewise, a patient who is dying and for whom every treatment has been tried, whose pain is well controlled, and whose family has accepted the inevitable would not need palliative care support. Conversely, if the patient is very anguished or uncomfortable or is a young patient with children, or if there is disagreement among various parties over whether the patient needs hospice care, then the palliative care team would step in.
Dr. Glare hopes to have the results of his research by next summer and to possibly expand it to a national, randomized study that would compare institutions that screen for palliative care needs with those that do not.