End-of-Life Picture Grows Bleaker

Laura Putre

February 04, 2015

More than a dozen years after a report on end-of-life care lamented the extent of patient and family suffering and recommended improvements, quality of life has declined further for patients in their final year.

In 1997, an Institute of Medicine report on the state of end-of-life care warned of the increasing medicalization and depersonalization of death and cautioned that extraordinary measures to extend life that increased costs were not necessarily in patients' best interests.

A new study on end-of-life trends from 1998 to 2010 found that overall, dying patients are experiencing more pain, depression, and confusion than their counterparts were in the late 1990s.

Adam E. Singer, MPhil, assistant policy analyst of the RAND Corporation, Santa Monica, California, and colleagues publish their findings in the February 3 issue of the Annals of Internal Medicine.

The researchers analyzed data from the University of Michigan Health and Retirement Study, a survey of 26,000 Americans older than 50 years. Participants are interviewed every 2 years until they die. A postmortem interview with a proxy (usually a family member) then takes places within 2 years after the participant dies.

Singer's study evaluated data from 7204 study participants who died during that period and whose proxies completed the final interview.

The evaluation consisted of yes/no questions about the presence of pain, depression, periodic confusion, dyspnea (impaired breathing), severe fatigue, incontinence, anorexia, and frequent vomiting.

Twenty-two percent of the participants reported cancer at the time of death, 33% had congestive heart failure or chronic lung disease, 16% were frail, and 16% died suddenly. Fourteen percent fell into none of these categories.

During the study period, the prevalence of any pain in the final year increased from 54.3% (95% confidence interval [CI], 51.6% - 57.1%) to 60.8% (95% CI, 58.2% - 63.4%). Depression increased by 26.6% (95% CI, 14.5% - 40.1%), and confusion by 31.3% (95% CI, 18.6% - 45.1%). "Over the time frame of our study, proxy reports of many symptoms increased in prevalence, including pain, depression, and periodic confusion. Consistent with our hypothesis, we found no significant trends in any symptom among decedents with cancer," the authors write.

The findings "raise concerns about shortcomings in end-of-life care despite increasing national attention and resources devoted to it," the researchers state, adding that "persistent gaps remain" in addressing end-of-life issues. They also note that the increase in end-of-life pain is particularly concerning "because pain is among the most visible and well-studied aspects of the end-of-life experience, has received policy attention, and significantly affects health-related quality of life."

The patients with cancer showed no significant chances in individual symptoms during the study period, an outcome researchers called "encouraging."

One coauthor reports receiving personal fees from Otsuka Pharmaceuticals. The other authors have disclosed no relevant financial relationships.

Ann Intern Med. 2015; 2015;162:175-183. Abstract


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