Care of the Dying in 'Urgent Need of Repair'

The Institute for Healthcare Improvement (IHI) has announced the formationof a collaborative of health care organizations that will work togetherto improve care at the end of life, an issue that many health-care leadersin the United States agree is in urgent need of repair. Hospitals, nursinghomes, managed care organizations, and hospices from across the UnitedStates and Canada are invited to apply for participation in the collaborative,which was begun in July 1997. The collaborative is cosponsored by the AmericanHospital Association.

"With such good intentions, how can so much go wrong? Study afterstudy finds that patients, families, doctors, and other health professionalsoften want the same qualities in care at the end of life: dignity, comfort,communication, and the company of loved ones," said Donald Berwick,MD, president and chief executive officer of the Institute for HealthcareImprovement. "And yet, time and again, we seemed trapped in desperatestruggles and wasted energies that help no one. Sensitive, respectful careat the end of life can be achieved. Now we need to assure that it happens,"Dr. Berwick said. According to Joanne Lynn, MD, chair and director of theCenter for Improving Care of the Dying at George Washington University,health-care providers want to do better in caring for dying patients, andthey know that the public demand for improvement has never been stronger.

"Because the health-care system so often fails them, terminallyill people and others near the end of life have come to view physician-assistedsuicide as their way to escape," said Dr. Lynn. "We have theknowledge to improve and the moral and ethical obligation to provide peoplewith comfort, compassion and a meaningful experience as their lives cometo a close."

"There are health-care organizations that have significantly reducedthe percentage of cancer patients with serious pain down to less than 10%of all patients experiencing pain," said Dr. Lynn. "Yet, suchknowledge is not widely replicated in usual health-care systems. The collaborativeaims to make such knowledge widespread," said Dr. Lynn. Accordingto Dr. Lynn, the collaborative will learn from organizations that havesuccessfully managed conditions such as congestive heart failure at theend of life while reducing hospital utilization by one-third. Often, medicalinterventions for such conditions are unwanted by patients, do not enhancepatient comfort, and are costly. Another emphasis will be on the ways nursinghomes have worked cooperatively with dying patients and their familiesin evaluating the decision to be transferred to a hospital.

Nursing Home vs Hospital

"At one nursing home the rate of decision against transfer to ahospital went from very rare to nearly 75% of patients," said Dr.Lynn. "A good nursing home is a much more comfortable place than ahospital for a patient at the end of life. By working with patients andtheir families to increase comfort and reduce transitions, the decisionto remain in the nursing home is often in the patient's best interest."Another area of focus will be on educating and supporting health-care professionalswho are often uneasy with the clinical, ethical, and spiritual care neededby dying patients, as well as the legal ramifications of that care.

To apply for the Care at the End of Life Collaborative or for furtherinformation, call the Institute for Healthcare Improvement at 617-754-4800.