Burdensome End-of-life

Burdensome End-of-Life Transitions Found Common among Nursing Home Patients with Advanced Dementia

Nearly one in five nursing home residents with advanced cognitive impairment experiences burdensome — and often avoidable — transitions in health care settings near the end of life, with the rate of such transitions varying greatly by state, according to a report published in The New England Journal of Medicine.

“A total of 96% of family members report that comfort is the primary goal of care for their relatives with advanced dementia,” write the authors. “Yet as we found, the pattern of transitions among nursing home residents with advanced cognitive impairment is often inconsistent with that goal.”

Recurrent hospitalizations for conditions that are potentially manageable and predictable among advanced dementia patients can cause distress near the end of life, point out the authors. Sources of such distress include: the trauma of the physical transfer; increased confusion caused by unfamiliar surroundings and providers; inability of staff in the new setting to address the patient’s special needs; and lack of provider communication about goals of care.

Investigators analyzed national Medicare data on 474,829 functionally dependent nursing home residents with advanced dementia (mean age, 85.7 years) who died between 2000 and 2007. In a second analysis, hospital referral regions were ranked into quintiles based on the rates of burdensome transitions among nursing home residents who died in 2006 and 2007.

Burdensome transitions included any transfer in the last three days of life, lack of continuity in nursing homes before and after hospitalization during the last 90 days of life, and multiple hospitalizations in the 90 days before death.

KEY FINDINGS

• Overall, 19% of residents had at least one burdensome transition in the last 90 days of life, with wide variation by region (range, 2.1% in Alaska to 37.5% in Louisiana).
• 11.6% had a health care transition in the last three days of life.
• The rate of one or more burdensome transitions increased nationally from 17.4% in 2000 to 19.6% in 2007.

FACTORS ASSOCIATED WITH AN INCREASED RISK OF BURDENSOME TRANSITION:

• Lack of a do-not-hospitalize order (adjusted risk ratio, 2.14; 95% confidence interval [CI], 2.06 to 2.23)
• Lack of a do-not-resuscitate order (adjusted risk ratio, 1.63; CI, 1.61 to 1.65)
• Black race (adjusted risk ratio, 1.24; CI, 1.22 to 1.26) or Hispanic ethnicity (adjusted risk ratio, 1.24; CI, 1.21 to 1.27)
• Male sex (adjusted risk ratio, 1.20; CI, 1.18 to 1.22)
• Lack of a written advance directive (adjusted risk ratio, 1.15; CI, 1.14 to 1.17) Quality of end-of-life care was found to vary greatly by hospital referral region. Nursing home residents in regions in the highest quintile of burdensome transitions in 2006 and 2007 were significantly more likely than those in the lowest quintile to experience care indicative of poor quality end-of-life care.

RESIDENTS IN THE HIGHEST QUINTILE WERE MORE LIKELY TO:

• Have a feeding tube inserted in the last 90 days of life (adjusted risk ratio, 3.38; CI, 2.48 to 2.60)
• Spend time in an intensive care unit in the last 30 days of life (adjusted risk ratio, 2.10; CI, 1.93 to 2.29)
• Be enrolled in hospice within three days of death (adjusted risk ratio, 1.17; CI, 1.07 to 1.28) “Burdensome transitions are common, vary according to state, and are associated with markers of poor quality in end-of-life care,” the authors conclude.

Source: “End-of-Life Transitions among Nursing Home Residents with Cognitive Issues,” The New England Journal of Medicine; September 29, 2011; 365(13):1212-1221. Gozalo P, Teno JM, et al; Department of Health Services, Policy, and Practice, Brown University, Providence, Rhode Island; Hebrew Senior Life, Institute for Aging Research, Boston; and Dartmouth Institute for Health Policy and Clinical Practice, Dartmouth Medical School, Lebanon, New Hampshire.