How Does QIS Accommodate End-Of-Life Care?
In his recent book, “Being Mortal,” Dr. Atul Gawande offers a current perspective on death and dying in the United States, highlighted by experiences with his dying patients and father.
He aptly describes the challenges we face in the advanced state of health care in the U.S. as “people now have the means to become concerned about the quality of their lives, even in sickness,” with a resulting desire to experience end of life in their home, instead of a hospital.
But despite the preference of many elders to die at home, reality is actually quite different. As recently as 2005only 29 percent of those aged 65 to 74, 24 percent of those aged 75 to 84, and 18 percent of those 85 or older died at home. The largest portion of those 65 to 74 (43 percent) died in the hospital, and the largest portion of those aged 85 and older (42 percent) died in a nursing home. And studies show that two-thirds of elders who die from dementia related causes experience end of life in nursing homes.
Studies show that two-thirds of elders who die from dementia related causes experience end of life in nursing homes.
For nursing home staff this is a major, and growing, challenge. Nursing home communities are generally a mix of Medicare residents undergoing recovery or rehabilitation with the aim of discharge, frail elders with extended stays who lack the ability and/or resources to live and ultimately die in a more independent setting, and those elders who are admitted to a nursing home for symptom management at the end of their lives. Deaths in the nursing home, whether expected or not, affect the entire nursing home community of residents and staff.
Often it is argued that regulations regarding safety and standards of care stand in the way of providing the care that residents want at the end of their lives. However, in the QIS survey, individuals with a terminal prognosis are excluded from measures such as weight loss, provision of supplements, or tube feeding and whether a resident is dressed appropriately. Thus, there is no regulatory requirement to force-feed a dying person or to require them to get up and dressed.
Furthermore, important components of palliative care, including pain management, privacy, honoring preferences for food and bathing, and treatment with dignity, are measured in QIS.
So what are the barriers to providing quality care at the end of life? Providing informed and compassionate care for a dying person requires ongoing conversations with the resident and family members as a resident’s condition and acceptance evolves.
As Gawande and others point out, health care professionals generally are neither trained nor comfortable with these discussions, so wishes are not elicited. Honoring end-of-life preferences requires training, creativity, and new models of care to provide in an institutional setting.
The hospice and palliative care movement has helped to make these discussions more acceptable and to provide trained and experienced staff to supplement care. In 2010, it is estimated that 45 percent of Americans received hospice services either at home or in a nursing home. These initiatives will have succeeded when health care providers in all settings are trained and able to provide compassionate and personalized end-of-life care.