© Geriatric Times. All rights reserved.
Palliative Care Seeks Structure for Growth
by William Kanapaux
Geriatric Times September/October 2004 Vol. V Issue 5
Modern medicine has turned many previous killer diseases into chronic conditions, yet the health care system has been slow to recognize the changes this brings to patients and families. Most people will live with one or more major illnesses--such as dementia, congestive heart failure, chronic lung disease or cancer--for years before they die.
However, the lives of people with chronic illnesses leave a lot to be desired in terms of quality, according to Diane Meier, M.D., director of the Center to Advance Palliative Care and the Hertzberg Palliative Care Institute at the Mount Sinai School of Medicine in New York City. She told Geriatric Times, "In order for that added life to be worth having, it has to be of reasonable quality."
That, however, requires the ability to control pain and address a range of other symptoms, such as constipation, loss of appetite, insomnia and depression. "There's a very long list," Meier added.
Palliative care focuses primarily on the relief of pain and suffering. Multidisciplinary teams of doctors, nurses and social workers also strive to help patients achieve the best quality of life possible and help families cope with the psychological, emotional and spiritual issues that these illnesses involve. Palliative care can also save money by helping place patients in the most appropriate care setting. A 2001 study of 500 Medicare patients who died at Mount Sinai Medical Center found that the palliative care program produced cost-savings of more than $750,000. In California, a study of the Kaiser Hospice and Home Health program found that patients who received palliative care had an average daily cost that was less than half the cost for patients receiving regular care ($62 versus $133).
However, while the need for palliative care continues to grow, few medical students receive proper training in providing it. The consequences, according to a policy report from the Center to Advance Palliative Care and the International Longevity Center-USA, are poor pain management and inappropriate or invasive medical procedures for seriously ill patients. For that reason, the federal government needs to support faculty development programs through a Palliative Care Academic Career Award (PACA) that would be similar to the Geriatric Academic Career Award. The geriatric program, which was established in 1999, has given 35 grants to junior faculty at medical schools around the country for conducting research and educating students. According to the PACA proposal, an investment averaging $10.5 million a year for 20 years would be sufficient to establish a core faculty in palliative care at every medical school in the United States.
The Open Society Institute's Project on Death in America (PDIA) has been a major contributor in supporting the development of faculty leaders in palliative care through its Faculty Scholars Program. That initiative, which began in 1995 and funded 87 faculty scholars at medical and nursing schools in the United States and Canada, ended last December.
Meier was one of the original faculty scholars in the PDIA program. The project's investment in human capital is the reason a field of palliative medicine now exists and why the PACA is so important, she said. "If we don't make this a legitimate career path, there will be no field of palliative care in 10 years."
Robert M. Arnold, M.D., president-elect of the American Academy of Hospice and Palliative Medicine, told GT that just like geriatrics 20 years ago, there is a tremendous need to build capacity in palliative care. "We have much in common with our colleagues in geriatrics because we deal with all organ systems and psychological and spiritual and family issues," said Arnold. Geriatrics has gone through similar growing pains in terms of how to build infrastructure and capacity to make sure that physicians are properly trained.
Training Needs
Despite growing awareness about the need for palliative care, training opportunities within the medical profession are few and far between. Most U.S. medical schools and residency programs offer a minimum of formal training on death and dying. "Unfortunately, until very recently, what medical students and interns and residents saw were physicians avoiding dying patients, rounding on them last or not rounding on them at all, and saying things like 'There's nothing more that we can do,' as if somehow the care of a dying patient was not a physician's responsibility," Meier said.
That attitude sends the message that physicians should focus on the patients who can be saved, she explained. The result has been a virtual abandonment of seriously ill people with complex medical problems.
The situation led to the rise of the hospice movement in the 1970s, but the movement had several core assumptions that turned out to be false, according to Meier. One assumption was that it would be easy to identify who was dying. One of the criteria for hospice care is that a patient be within six months of death. However, predicting prognosis and mortality is not a science, and by the time everyone agrees that a patient is dying, they are usually within days of death.
Second, hospice patients must give up their right to regular Medicare or other insurance coverage for life-prolonging or curative treatment. "If you force the choice between life-prolonging treatment and comfort care, patients will opt for the life-prolonging treatment every time," Meier said.
These two assumptions have caused enormous problems in accessing hospice care. The number of patients being referred to hospice care is climbing, while the median length of stay is dropping, Meier said. "People don't get there until they have a week or two left to live."
Consequently, the patient gets no palliative care for nearly the entire course of a serious illness. Palliative care leaders want to take the lessons learned from the hospice care movement--sophisticated symptom management, family support, good communication and well-coordinated care across settings--but eliminate the requirement that patients are labeled as dying and forced to give up care options before gaining access to services.
Arnold believes that palliative care needs to become an accredited specialty. He hopes that the American Board of Medical Specialties will do that in the next five years, but said that would it require the specialty to show a knowledge base, training and fellowship programs. Because palliative care is not an accredited specialty, it cannot be billed, and insurers often will not reimburse it as a clinical skill. So providing it loses money for the hospital and the physician.
Arnold added that it is still important to address issues and goals with patients who have life-limiting illnesses, such as: "What do you think is going to happen with your illness?" "What are you worried about?" "What do you still have to accomplish?"
"I think that the problem is that we often in medicine don't like to talk about these issues because they may cause us to feel like we're failing," Arnold said. "Too often in our health care system, you see patients or families who say 'If only I would have known.' It's our job to prepare them so they're not surprised."
Costs of Traditional Care
People who come into the intensive care setting with a serious underlying illness such as cancer, dementia or congestive heart failure often do not recover, even with all the support of the intensive care unit, Meier said. "Then you're left with a very disappointed, sometimes angry, family who felt they were led to believe that this would bring Dad back."
Time-consuming family meetings are often required to explain what has happened. Those kinds of meetings take hours, Meier said, and require skills for which most physicians are poorly trained. If palliative care were involved, the patient would not languish for 65 days in an intensive care unit. A palliative care team that came in on day 40 would spend the necessary time explaining the situation to the family and asking what the patient would want. "Very often, once people understand the reality of the situation, they opt for much more appropriate levels of care," Meier said. That would result in a 25-day savings on an ICU stay.
A palliative care team's work extends beyond the hospital. The team must make sure that a patient and family are going to a safe setting that will provide the optimal quality and quantity of care. The task is a highly skilled, medically driven process, Meier said. If patients with severe pain or shortness of breath go home without appropriate medication, "they'll be back in the emergency room within three hours."
