Medical Students and Palliative Care

FRANK J. BRESCIA, M.D., FREDERICK A. FLATOW, M.D
WILLIAM SCOTT LONG, M.D., AND SANDRA KLIMAS, M.P.H.

     The United States began the decade of the 1970s without a single hospice. In 1974 America's first hospice opened in New Haven beginning with a home care program. A 44-bed, free-standing hospital¹ was opened in 1980 with eight beds added in 1986. Hospice in North American had finally materialized as a philosophical, social, and medical phenomenon. The mission of this experiment was clear: to develop a program that would fulfill unmet needs for the dying and allow people to die with those basic elements of a good death—care, communication, continuity, control, calmness, and closure.

    For hospice care, the goals of therapy are directed toward management of difficult and painful symptoms, not only physical but psychosocial as well. To achieve these goals requires a diverse team with unity of purpose, including nursing, pharmacy, social work, volunteers, pastoral care, nutrition, arts, physical therapy, and physicians. More than two million Americans die each year—90% with a clinical illness and 80% within institutions. The magnitude of the problems for dying patients and their families and friends is obviously enormous. Cancer alone kills one person every minute in our country. Over the years, the Connecticut Hospice has become a resource of care for patients with terminal illness, a body of knowledge, the richness of caregivers' observation, and the lessons learned from listening to more than 35,000 patients and their families. From the beginning, there has

FRANK J. BRESCIA, M.D., medical director, Calvary Hospital, Bronx, New York; fellow of the Hospice Institute for Education, Training, and Research, Inc.; associate professor of medicine, Emory University School of Medicine, chief of the oncology section, Grady Memorial Hospital, Atlanta, GA. FREDRICK FLATOW, MD., director of medicine, Connecticut Hospice, Inc., fellow of the American College of Physicians. WILLIAM SCOTT LONG, Ph.D, M.D., attending physician, The Connecticut Hospice, Branford. SANDRA KLIMAS, R.N., B.S.N., M.P.H., vice president, Clinical Operations, The Connecticut Hospice, Branford.

been a moral obligation to evaluate how care is delivered, to learn from mistakes, and to address the formal needs of sharing crucial information with a wide range of disciplines—physicians, medical students, nurses, pharmacists, etc. through training, education and research. Motivation and expressions of compassion do not necessarily equate with competency at the bedside. Therefore, to invest in physician participation, documentation, history taking, and patient assessment becomes important. How do we measure and monitor what we do? How do we deliver care in an environment where we know patients will die and where clinical options for cure are limited or nonexistent?

     Connecticut Hospice made the decision in 1986 to address the needs of medical students and others (residents, fellows, nurses, nurse practitioners, physician assistants) to have exposure outside conventional hospital settings to help develop communicative skills in dealing with dying patients and their families. Elective programs for senior medical students are listed at the Yale University School of Medicine and the University of Connecticut School of Medicine. Two to four week sessions allow hands-on care of patients and their families and friends dealing directly with the patient's complaints, symptoms, fears, and expectations. The curriculum encompasses pharmacological and other protocols for symptom management that are commonplace with the hospice patient and family. The faculty includes members of the interdisciplinary team.

     People who are dying become different and difficult because clinicians treat them differently—many times, with apathy and indifference. At the other extreme there is an inability to address the frustration of perceived failures, and the caregivers fall victims to their own inventiveness in ordering tests, then seeking for a cure that can never

happen. Principals of good hospice care are no different from those used in other medical care situations: clinical competence, experienced technical skills, and a bedside manner are used to define treatment in the patient's best interest.

     A difficulty for physicians is to recognize that point in the natural course of a disease that initiates the dying process, ie, to determine when the patient can no longer be effectively treated with a goal to cure or prolong life. The inexperienced physician learns to ask a series of specific questions as clinical options are reviewed:

• What does this patient and family understand?
• What does this patient and family want?
• What degree of futility is there?
• What and how severe are the patient's symptoms?
• What has been the tempo of progression over the last few weeks or months?
• Can I anticipate how the patient will die?
• What are our reasonable goals?
• Will I make this patient worse by whatever I do?
• What do I do if the patient and family disagree with my recommendations?
• What are the specific ways to involve the patient and family in decisions?

     Thinking clearly about our goals for a specific patient is critical when we must optimize the quality of life during the time remaining. Good doctors need to learn the difference between what they wish to happen for their patients and what the clinical reality dictates likely will happen.

     During the students' clinical rotation (see Table 1) at Connecticut Hospice, each one participates as a member of the hospice team in defining the comprehensive plan for each patient and family. This allows the student to witness what a coordinated effort among various disciplines can accomplish in most situations. Beyond the severity of their physical symptoms, patients often have distress that encompasses their spiritual, emotional, and cultural lives. This bridge that unites the humanity of the caregivers and those needing care requires an appreciation of human existence itself.

     One of the issues explored with students is the care of patients at home. This is an important part of clinical experience, because, despite the difficulties in keeping patients at home, most patients prefer to die there. Only 3% of relatives of patients who died at home would have preferred the hospital setting.³ The consistent factor that demonstrates satisfaction by hospice families was the place of death. At Hospice patients can be admitted from home care for control of symptoms and to develop a plan of care, which involves teaching the family, then return home again. Some communities do not have the resources and trained individuals to meet the complex needs of patients with a terminal illness at home. Even those families who want their loved ones at home may not fully appreciate the burden of 24-hour care and may feel abandoned by their caregivers.

     How well do we attract younger physicians in this important work and allow them to experience the satisfaction perceived in other areas of medicine? Education and experience in care at the end of life must begin early in the education process. As death is a part of life, and we all hope for quality of life for as long as life lasts, then hospice and palliative care must be a part of every physician's practice. All of us agree that failure to provide proper care at the end of life is no longer acceptable since it abandons ideals that guide the profession. We must provide training now for physicians, patients, and families of the future.

REFERENCES

1.Accredited with commendation by the Joint Commission on Accreditation of Health Care Organizations as a Hospital, Home Care Agency, and Hospice. Licensed by the State of Connecticut, Department of Health Services as a Short Term Hospital, Special Hospice, and as a Home Care Agency. Certified by Medicare as a Hospice, Home Care Agency, and Hospital. Accredited by the Accreditation Council for Continuing Medical Education (ACCME).

2.Weisman A: Coping with Cancer. New York, N.Y.: McGraw Hill; 1979.

3.Wilkes E: Dying now. Lancet 1984; 1:950-2.