Home Government Affairs Newsroom Meetings Publications	Shopping Cart Site Map

September 2001 Reporter

Replicating the Real Thing

Advancing Quality of Care at the End of Life

A Hippocratic Oath for Our Time

Current & Choice: "Physician, Heal Thy Sisters"

A Word from the President

Reporter Archive

Search the Reporter

Reporter Staff:

Rachel Muir, Managing Editor
Barbara Gabriel, Staff Writer
Saunsurae Robinson, Editorial Assistant

AAMC Newsroom

Advancing Quality Care at the End of Life

By Jennifer Proctor

For too many people in the United States, death is a needlessly lonely and painful experience. “Patients and families often feel abandoned at the end of life,” says David Weissman, M.D., director of the palliative medicine program at the Medical College of Wisconsin (MCW). “Doctors tell patients there is nothing more they can do for them, but there is.”

Patients who have stopped responding to treatment still suffer from complaints such as pain, shortness of breath, nausea, and constipation, not to mention depression and other psychiatric ailments. Palliative care focuses on the prevention and relief of suffering through the management of symptoms throughout an illness. It encompasses the emotional, spiritual, and practical needs of patients and their loved ones.

But while medical schools are increasingly recognizing the need to incorporate end-of-life care into their curricula, experts say that internal and external barriers often hinder the implementation of comprehensive educational programs. Indeed, although palliative care may sound like the best option for those facing the end of life, studies show that many patients do not receive it.

In 1997, the Institute of Medicine (IOM) released “Approaching Death: Improving Care at the End of Life,” a ground-breaking report that charged health care professionals and others to take concerted action to improve care at the end of life. Four years later, many experts say progress has been minimal. For example, at least half of the 550,000 people who will die from cancer this year will experience distressing physical and psychological symptoms that could be better addressed through effective palliative care, according to a June 2001 report from the IOM’s National Cancer Policy Board and the National Research Council.

“From the physician’s perspective, the lack of palliation and end-of-life care that exists in the United States is a recurring bad dream that we have year after year and decade after decade. The IOM report is yet another reminder that there is a need for improving our standard of care in palliation,” says Tim Byers, M.D., M.P.H., a professor of epidemiology and program leader for clinical cancer prevention and control at the University of Colorado Health Sciences Center. Dr. Byers also sits on the National Cancer Policy Board.

The 2001 IOM report calls first and foremost for stronger federal leadership to improve end-of-life care. It cites the need for government agencies to fund research that could lead to the development of better interventions and for public and private insurers to re-examine reimbursement policies for palliative care services. The report notes that education must play a role and finds that few health care professionals receive adequate training.

It’s a theme also addressed in the 1997 report, which states, “despite some increase in coverage of care for dying patients, it appears that relevant instruction, clinical experience, and assessments of student attitudes, knowledge, and skills are still limited, even as they pertain to patients who die in hospitals.” The report makes specific training recommendations, including that undergraduate medical education cover palliative care by engaging students more directly in the learning process, strengthening problem-solving and reasoning skills, improving patient-physician communication, and encouraging teamwork among health professionals.

Surveying the Landscape

While the IOM reports make clear that palliative care isn’t nearly as pervasive as it should be, a number of academic medical institutions and organizations are making progress in the promotion of quality end-of-life care. For example, the Liaison Committee for Medical Education (LCME) — the accrediting authority for medical education programs leading to the M.D. degree in the United States and Canada — requires that medical school clinical instruction “include the important aspects of preventive, acute, chronic, continuing, rehabilitative, and end-of-life care.”

The Department of Veterans Affairs (VA) has also taken steps to boost training in end-of-life care, recently announcing an Interprofessional Fellowship Program in Palliative Care. The program aims to “develop leaders with vision, knowledge, and commitment to lead palliative care into the 21st century,” says Stephanie Pincus, M.D., the VA’s chief academic affiliations officer. “A comprehensive, interprofessional approach to providing palliative care and educating health professionals can result in broadened treatment perspectives and opportunities for implementing change.”

And medical schools and teaching hospitals have been recognized for their efforts to establish formal palliative care programs. The report “Pioneer Programs in Palliative Care,” published by the Milbank Memorial Fund and the Robert Wood Johnson Foundation, profiles programs at nine medical centers: Cooper Green Hospital, Beth Israel Deaconess Medical Center, the Cleveland Clinic Foundation, Massachusetts General Hospital, the Medical College of Virginia, Memorial Sloan-Kettering Cancer Center, Mount Sinai School of Medicine, Northwestern Memorial Hospital, and the University of Pittsburgh.

The AAMC is also helping to provide a forum for discussion of palliative care issues. For the fifth year, the association will co-sponsor the Spirituality, Culture, and End-of-Life Conference, which will be held in Kansas City, Mo. this month. In addition, a variety of private organizations have provided resources and funding for medical education on end-of-life care. For example, with funding from the Robert Wood Johnson Foundation, the New York Academy of Medicine has created the Palliative Education Assessment Tool (PEAT), which can help medical schools plan for the enhancement of palliative care education. (An October 2000 Academic Medicine article provides more information on PEAT.)

Notwithstanding these advances, Christine Cassel, M.D., co-director of the Center to Advance Palliative Care at the Mount Sinai Medical Center and co-editor of the 1997 IOM report, says that the educational system needs to work harder to train doctors appropriately. “Most physicians should have basic palliative skills, and medical school is as good a place as any to start providing those skills,” says Dr. Cassel, who together with her colleagues organizes and promotes access to professional education opportunities in palliative care for interdisciplinary health professionals.

Other experts agree. “A lot of aspects of end-of-life care training should be addressed, and medical schools and teaching hospitals need to dive in and get started,” says MCW’s Dr. Weissman, who has developed resources to assist medical educators in implementing programs addressing specific end-of-life care topics.

Both Drs. Weissman and Cassel stress that to truly improve end-of-life care, medical schools must do more than address the topic in one lecture. Top-notch palliative care training spans the continuum — from medical school to continuing medical education — and crosses the lines of medical school departments and specialties.

Overcoming Internal Barriers

Lack of government funding is not the only roadblock to effective end- of-life care. Oftentimes, physicians themselves have internal barriers to providing quality care at the end of life. Dr. Cassel says that in her work she encounters many doctors with misconceptions about end-of-life care. For example, doctors think providing palliative care means giving up and that broaching end-of-life issues will take away hope for a patient and his or her family. As a result, doctors may not answer patients’ questions honestly.

“Patients want a straight answer from their doctor. One of the most frustrating things for them is that no one will talk to them about what’s going on,” Dr. Cassel says. “Often their fears are much greater than the reality, and they feel isolated because they are not getting the facts.” She emphasizes the importance of strong communication skills. Without being blunt or cruel, doctors should discuss with patients their prognosis, plans for the end of life, and seeing family members. “The most tragic thing is when health professionals don’t let the patient know what is happening, and then the family gets there too late.”

Dr. Cassel also finds that many physicians think palliation simply means morphine and hand holding. “Doctors tend to diminish palliative care by calling it ‘hand holding,’ meaning that it doesn’t take their level of expertise to do it. In fact, it takes a great deal of expertise, and most doctors aren’t very good at it,” she says. “An essential part of a physician’s mission is to help relieve suffering, particularly at the end of life.” Doctors often view death as failure, and perhaps this is the strongest and most detrimental misconception of them all. MCW’s Dr. Weissman says death is still not discussed, and doctors do not know how to handle it. “We focus on diseases and conditions, and we treat those, instead of caring for people at the end of life. Doctors don’t always accept the idea that death is a normal part of the life cycle, and that medical care has its limitations.”

Training programs are beginning to address these internal barriers as well, but Dr. Weissman concludes there is still a long road ahead. “When every school has a comprehensive curriculum, when every residency program has palliative and end-of-life education integrated into their teaching, when we have faculty who have had this type of training and expect that this is the way medicine is practiced, then we will know we are moving ahead.” N

Resources for End-of-Life Care Education

A number of private organizations provide funding to support end-of-life care education and research. Here’s a look at some of the larger grant makers.

The Commonwealth Fund supports independent research on health and social issues and makes grants to improve health care practice and policy.

The Greenwall Foundation makes philanthropic grants primarily to support work in bioethics, education, arts, and humanities.

The Milbank Memorial Fund aims to improve policy for the care of patients, the health of populations, and the organization, financing, and governance of health services.

The Open Society Institute’s Project Death in America works toward understanding and transforming the culture and experience of dying and bereavement through initiatives in research, scholarship, the humanities, and the arts.

The Robert Wood Johnson Foundation, which aims to improve the health and health care of all Americans, has funded the following national program offices and initiatives to improve end-of-life care.

Promoting Excellence in End-of-Life Care: Housed at the Practical Ethics Center of the University of Montana, this office establishes demonstration projects to improve care for dying patients and their families.

Community-State Partnerships to Improve End-of-Life Care: This program office, based at the Midwest Bioethics Center in Kansas City, Mo., focuses its efforts on changing health care policy and improving the national regulatory environment related to end-of-life care.

Center to Advance Palliative Care: Created at New York’s Mount Sinai Medical Center, this program office centers its efforts on integrating principles of palliative care in hospitals and within national medical education and certification.

Last Acts: Based in Washington, D.C., this national program calls for public support to improve care at the end of life.

Education for Physicians on End-of-Life Care (EPEC): EPEC is designed to educate all physicians on the essential clinical competencies required to provide quality end-of-life care. EPEC’s core curriculum teaches fundamental skills in communication, ethical decision-making, palliative care, psychosocial considerations, and pain and symptom management.

End-of-Life Physician Education Resource Center (EPERC): EPERC assists physician educators and others in locating high-quality, peer-reviewed training materials. This Web-based resource also supports the identification and distribution of information on end-of-life training materials, publications, conferences, and more.