END-OF-LIFE CARE:
WHAT IS THE PHYSICIAN'S ROLE?

REPORT PROVIDES CORE PRINCIPLES FOR PROVIDING PALLIATIVE CARE

NEW YORK CITY-- Nearly 2.5 million Americans die each year, with the majority of deaths occurring among those age 65 years or older. Cardiovascular disease and cancer are among the leading causes of death, and progressive aging complicated by a wide range of clinical disorders virtually guarantees that all medical specialists will encounter dying patients at some point during their career.

Yet, care for the dying has long been inadequate. No palliative medical care specialty exists, although some specialists, including internists, family physicians, and oncologists, have dedicated increased attention to end-of-life care.

BARRIERS TO PALLIATIVE CARE

Research has uncovered a variety of barriers to providing appropriate end-of-life care, including poor physician-patient communication, lack of recognition and respect for patients' advance directives, and inadequate management of symptoms, especially pain.[1] "Fifty percent of dying patients report inadequate pain control in the last three days of life," stressed Kathleen M. Foley, MD, in an interview with RESPIRATORY REVIEWS.

To help address these inadequacies, Dr. Foley and Christine K. Cassel, MD, convened a meeting several years ago of representatives from prominent medical organizations to develop a set of core principles that would strengthen clinical competency and ensure quality care at the end of life. A recent consensus report summarizes these principles and describes how several specialty societies have endorsed or adapted them to their own unique circumstances.[2]

The meeting yielded 11 core principles (see sidebar on page 32). "We didn't necessarily expect each medical society to sign on to this exact set of core principles, but rather to develop ones that were appropriate for their circumstances," noted Dr. Foley, who is an attending neurologist at Memorial Sloan-Kettering Cancer Center in New York City. Dr. Cassel, who chaired the meeting, is a professor and chairman of the Henry L. Schwartz Department of Geriatrics at Mount Sinai School of Medicine in New York City.

By the summer of 1999, seven medical societies, including the American College of Chest Physicians, had adopted the core principles. Four societies had adopted the principles with modifications, and two societies had drafted their own core principles (see sidebar).

END-STAGE LUNG DISEASE

The core principles are especially relevant for physicians who work in intensive care units (ICUs) or who provide end-of-life care for patients with advanced lung disease.

"There is evidence that at least some of these patients, particularly those with chronic obstructive pulmonary disease (COPD), may receive lower-quality end-of-life care than other patients, such as those with cancer," J. Randall Curtis, MD, MPH, recently told RESPIRATORY REVIEWS.

For example, COPD patients are more likely to die with dyspnea or on mechanical ventilation, said Dr. Curtis, an assistant professor in the Division of Pulmonary and Critical Care Medicine at Harborview Medical Center in Seattle. "One of the main reasons for that," he asserted, "is that it's hard for us to predict when the last month or so of life will be for these patients."

That, in turn, makes it difficult to know when to discuss end-of-life care with patients. Physicians typically do this only when it becomes clear that death is imminent, said Dr. Curtis. When they do have these discussions, communication tends to be inadequate, according to the preliminary results of a study of end-stage COPD patients he is helping to conduct.

End-of-life care may begin to markedly improve, however, because of increased training during medical school and residency. "Training in end-of-life care has been lacking," said Dr. Curtis. "But it's increasing, and physicians have been getting more of it in the last five years or so."

The approach to end-of-life care in the ICU has already dramatically changed. "Twenty years ago, most deaths in the ICU took place in the setting of full life support," Dr. Curtis noted. "Now, the majority of ICU deaths occur after a decision to withdraw life support. So there's a growing interest in figuring out how to do this well while keeping the patient comfortable."

Dr. Curtis is involved in this effort. He and Dr. Gordon Rubenfeld at the University of Washington in Seattle are editing a book on end-of-life care titled Managing Death in the ICU: The Transition from Cure to Comfort. The book is due out this summer.

It is also possible that a palliative care specialty may eventually emerge, Dr. Foley suggested. Until then, certification in palliative care is available through the Board of Hospice and Palliative Care Medicine. "And there has been discussion about the Institute for Clinical Evaluation developing a similar certification," Dr. Foley added.

--Timothy Begany

References
1. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA. 1995;274:1591-1598.
2. Cassel CK, Foley KM. Principles for Care of Patients at the End of Life: An Emerging Consensus Among the Specialties of Medicine. New York, NY: Milbank Memorial Fund; 1999.

 

Core Principles for End-of-Life Care†

The core principles outlined in the consensus report by Drs. Christine K. Cassel and Kathleen M. Foley state that care at the end of life should: Respect the dignity of both patients and caregivers. Be sensitive to and respectful of the patient's and family's wishes. Use the most appropriate measures that are consistent with patient choices. Encompass alleviation of pain and other physical symptoms. Assess and manage psychological, social, and spiritual/religious problems. Offer continuity (the patient should be able to continue to be cared for, if so desired, by his/her primary care and specialist providers). Provide access to any therapy that may realistically be expected to improve the patient's quality of life, including alternative or nontraditional treatments. Provide access to palliative care and hospice care. Respect the right to refuse treatment. Respect the physician's professional responsibility to discontinue some treatments when appropriate, with consideration for both patient and family preferences. Promote clinical and evidence-based research on providing care at the end of life. SOCIETIES THAT HAVE ADOPTED THE CORE PRINCIPLES Academy of Psychosomatic Medicine American Academy of Hospice and Palliative Medicine American Board of Hospice and Palliative Medicine American College of Chest Physicians American Medical Association American Pain Society National Kidney Foundation SOCIETIES THAT HAVE ADOPTED THE PRINCIPLES WITH MODIFICATIONS American Academy of Pediatrics American College of Physicians American College of Surgeons American Geriatrics Society SOCIETIES THAT HAVE DRAFTED THEIR OWN SPECIFIC STATEMENTS THAT EMBODY ALL OF THE CORE PRINCIPLES American Academy of Neurology American Society of Clinical Oncology

†The full report is available at http://www.milbank.org.