Increasing reports of pain in the last year of life

Last Updated: 2015-02-03

By Will Boggs MD

NEW YORK (Reuters Health) - Between 1998 and 2010, reports of symptoms in the last year of life have not declined in the U.S., and proxy-reported pain has increased, according to a national longitudinal survey.

"We were definitely surprised that no symptom we looked at became less common over time," Adam E. Singer, from Pardee RAND Graduate School, RAND Corporation, Santa Monica, California, told Reuters Health by email. "We were also surprised that pain became more common, since it's highly visible, well-studied, relatively reliably ameliorated, and has a large impact on health-related quality of life."

A 1997 Institute of Medicine report described widespread patient and family suffering and emphasized the need for better care at the end of life. Whether national efforts to improve end-of-life care since that report have brought significant changes is not known.

Singer and colleagues used data from the Health and Retirement Study to track changes in pain intensity and symptom prevalence during the last year of life for 7204 participants between 1998 and 2010.

About 50% of the decedents were reported to have had moderate or severe pain, depression, periodic confusion, dyspnea, or incontinence in the last year of life; approximately 60% had any pain, severe fatigue, or anorexia; and about one in eight had frequent vomiting.

During the study period, proxy reports of the prevalence of any pain increased by 11.9%, according to the February 3 Annals of Internal Medicine report.

There were also increases in the reported prevalences of depression and periodic confusion and incontinence for all decedents.

Moderate or severe pain, severe fatigue, anorexia, and frequent vomiting did not change significantly in either direction in any group of decedents, but there was one glimmer of hope: there were no significant changes for any symptom group among cancer patients.

"I think there are some aspects of end-of-life care that still need attention. For example, average hospice stays are still under three weeks and are often 'tacked on' to otherwise intense late-life care, palliative care services are largely confined to hospitals, and symptom treatments known to be effective sometimes just aren't given to patients. These could help explain why we're not seeing improvement in symptom prevalence alongside the ostensible improvements in end-of-life care since 1997," Singer said.

"In addition, people may be living a little longer in very poor health, and giving them more choices about foregoing treatment a little earlier could make the last weeks less troubled," he said.

"Symptom burden near the end of life is high, and in many cases it's getting worse," Singer concluded. "Addressing this burden requires both changes in how the health care system functions and active effort on the part of physicians to identify and treat end-of-life symptoms and to give patients and families more choices in how the last year of life will be lived."

"The authors argue that symptom management at the end of life has worsened over the 12-year period," Dr. Thomas Gill from Yale School of Medicine, New Haven, Connecticut, who recently investigated functional trajectories in the year before hospice, told Reuters Health by email.

"An alternative explanation for the findings is that patients are living longer with their chronic conditions and are generally sicker and more chronically ill prior to their death, in part because of new or improved life-sustaining treatments over the 12-year study period. The authors simply could not adjust for all of these relevant factors, hence residual confounding," he said. (His paper is at: http://bit.ly/1EEgaFd)

"Don't get me wrong," Dr. Gill said. "Symptom management is very important and we need to do a better job. But, I'm not convinced that we are doing a worse job now than we were doing in 1998."

Dr. Joel D. Marcus is director of Psychosocial Oncology Palliative Care Services at Ochsner Cancer Institute, New Orleans, Louisiana. He told Reuters Health by email, "Unfortunately, I was not very surprised by these results. Pain, distress, and other physical and existential issues appear (in my clinical experience) to be far more prevalent then need to be. Although as the data points out, more patients are receiving hospice care, it may be, as the article points, out tacked on at the later stages of the disease trajectory."

"Early palliative care and the initiation of conversations surrounding quality of life and end-of-life should occur at time of diagnosis of a life-limiting disease," Dr. Marcus said. "If this is not possible these discussions should occur as soon as possible. These conversations must be continued over time. This is not a discrete issue, but rather one that waxes and wanes in importance with the patient's condition."

"Pain, depression, and other distressing symptoms once identified should be treated aggressively with full collaboration of the family or stakeholders in the patient's care," Dr. Marcus concluded.

The study was funded by the National Institute of Nursing Research. Two authors report receiving support from multiple organizations or companies; the other authors report no disclosures.

SOURCE: http://bit.ly/16eOMyy

Ann Intern Med 2015.