Joan Teno, M.D.

A tolerable death

A survey of bereaved family members in Rhode Island showed their loved ones died in pain in nursing homes. Family members should expect that pain can be controlled. The U.S. Health Care Financing Administration, which oversees all nursing homes in the country, should make pain a focus of state inspections of nursing homes.

A tolerable death. Some people hope and pray for it. But when asked, families who stood by the nursing home beds of their loved ones said that those final days never approached what they thought of as tolerable. Instead, their loved ones’ last days were filled with pain, unanticipated treatment decisions, a lack of communication between physicians and nursing homes, and an absence of spiritual support.

Why should we be concerned? These bad experiences identified in a survey of 204 Rhode Island bereaved family members will only expand across the country. Currently, one in three Rhode Islanders die in nursing homes, ranking the state sixth in the nation in percentage of people who die in such facilities. Within 20 years, the elderly population is expected to increase substantially in all states. It is projected that in 2020, 40 percent of Americans will die nursing homes.

Dying in a nursing home can be made tolerable.

Family members should expect that pain can be controlled. The most important thing is to have someone from the family present who is an advocate for the patient’s care.

There are also steps that federal and state governments can take. The U.S. Health Care Financing Administration, which oversees all nursing homes in the country, should make pain a focus for state inspections of nursing homes. Physicians and nurses should be required to provide evidence of continuing medical education credits in pain management. The education of health professionals must include palliative care, which emphasizes a full spectrum of pain management, symptom relief, and physical, psychological and spiritual care.

Some progress toward pain management is already poised to take effect. In Rhode Island, a collaboration of health professionals, nursing homes, and advocates for seniors will work together in a statewide quality improvement program for pain management. Participating nursing homes will attempt to achieve rapid improvement during a 15-month period.

The health care system now focuses on a single episode of illness. Instead, the system must shift its focus to the needs of an aging population living with several chronic illnesses.

Rhode Island law requires reporting of the quality of care for all health care institutions. Pain and other indicators of the quality of end-of-life care should be part of this public reporting. Quality reporting must examine how well local hospitals ensure that correct home services are in place prior to hospital discharge. Is the nursing home ready to provide the oxygen machine that the doctor ordered for the patient as soon as she arrives?

Now is the time to ask critical questions about our long-term care systems. Rhode Island has led the nation in the health care of children by insuring them. State government must additionally focus on the needs of our oldest citizens. In Rhode Island, we must seize the opportunity to provide the knowledge for the rest of the nation.

Joan Teno, M.D., is associate professor of medicine at the Brown University School of Medicine and associate medical director of Hospice Care of Rhode Island. She is the principal investigator of the Rhode Island Partnership to Improve Care at the End of Life, a collaboration with the University of Rhode Island and Aging 2000, a non-profit organization which advocates for improving the health care system for seniors.