Distressing End of Life Symptoms Common and Often Untreated

Adam E. Singer, MPhil, Pardee RAND Graduate School, RAND Corporation Santa Monica, CAMedicalResearch.com Interview with:
Adam E. Singer, MPhil
Pardee RAND Graduate School, RAND Corporation
Santa Monica, CA

MedicalResearch: What is the background for this study? What are the main findings?

Response: In 1997, the Institute of Medicine (IOM) released a seminal report on the state of end-of-life care in the US that called for major changes in the organization and delivery of end-of-life care. Many of the IOM’s indictments have ostensibly been addressed since that time through the expansion of palliative care and hospice, along with a greater focus on symptom management in both policy and practice. This study was designed to ask whether end-of-life symptoms have become less prevalent from 1998 to 2010 for the population as a whole and also for subgroups that died suddenly or had cancer, congestive heart failure (CHF), chronic lung disease, or frailty.

The study found that many alarming symptoms were common in the last year of life and affected more people from 1998 to 2010. For example, in the whole population, pain affected 54% in 1998 and 61% in 2010 (a 12% increase). Depression affected 45% in 1998 and 57% in 2010 (a 27% increase). Periodic confusion affected 41% in 1998 and 54% in 2010 (a 31% increase). Depression and periodic confusion also became more prevalent in subgroups with CHF and/or chronic lung disease and frailty. In addition, nearly all other symptoms in the whole population and in each of the subgroups trended toward increases in prevalence from 1998 to 2010, although most of these trends did not reach statistical significance. The one exception is that there were no significant changes in the subgroup with cancer.

MedicalResearch: What should clinicians and patients take away from your report?

Response:  Clinicians should be aware that symptom burden near the end of life is high, and in many cases it’s getting worse. Addressing this burden requires both changes in how the health care system functions and active effort on the part of clinicians to identify and treat end-of-life symptoms and to give patients and families more choices in how the last part of life will be lived. The lowest-hanging fruit is simply delivering the interventions we already know are effective. That doesn’t always happen, sometimes at alarming rates (one study [http://archinte.jamanetwork.com/article.aspx?articleid=1748830], for example, showed that over 40% of cancer outpatients didn’t receive regular screenings for pain). Clinicians should also actively consider referral to hospice if they think a patient is nearing the end of his or her life or to palliative care and pain specialists when that expertise is needed. It’s well-established that these services can improve symptomatic relief.

Patients should be aware that they may experience multiple symptoms near the end of their lives, which may cause considerable discomfort and distress. They shouldn’t hesitate to discuss these symptoms with their providers, advocate for their needs, and consider palliative care and hospice.

 MedicalResearch: What recommendations do you have for future research as a result of this study?

Response:  In the short term, aligning current care with best practices represents the most promising approach to reverse the negative trends we identified and reduce end-of-life symptom burden for millions of Americans. Future research should evaluate settings that provide better and worse end-of-life symptom management to offer insight into promoting best practices. Beyond that, the trends we characterized must be parsed further in order to identify better and more coordinated ways to organize and deliver high-quality end-of-life symptom management.


Symptom Trends in the Last Year of Life From 1998 to 2010 A Cohort Study

Adam E. Singer, MPhil; Daniella Meeker, PhD, MS; Joan M. Teno, MD, MS; Joanne Lynn, MD, MA, MS; June R. Lunney, PhD, RN; and Karl A. Lorenz, MD, MSHS

Ann Intern Med. 2015;162:175-183. doi:10.7326/M13-1609 www.annals.org

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MedicalResearch.com Interview with:, Adam E. Singer, MPhil, Pardee, RAND Graduate School, RAND Corporation, & Santa Monica, CA (2015). Distressing End of Life Symptoms Common and Often Untreated MedicalResearch.com

Last Updated on February 7, 2015 by Marie Benz MD FAAD