Department of Research & Evaluation News

The vast majority of patients make their end-of-life care wishes known to loved ones, and nearly 90% of the time those wishes were carried out according to Kaiser Permanente research published April 6, 2021, in the medical journal JAMA Network Open.

“There is a common perception that people don’t often document or tell others about their end-of-life wishes,” said the study’s lead author, David Glass, PhD, a research scientist at the Kaiser Permanente Southern California Department of Research & Evaluation and lecturer in the Department of Health Systems Science at the Kaiser Permanente Bernard J. Tyson School of Medicine. “Our research showed that people shared their end-of-life wishes and that those wishes are typically met here at Kaiser Permanente Southern California.”

Dr. Glass led the survey of the next-of-kin of 715 Kaiser Permanente members who died at age 65 or older. The next-of-kin survey participants reported that the vast majority of their loved ones had end-of-life discussions and got the care they preferred. Notably, this was true for members with quite different end-of-life values. The next-of-kin of those who wanted physicians to “do everything” to save a life and of those who preferred a less intrusive approach to end-of-life care reported that those wishes had been met.

“We found it particularly interesting that 83% of next-of-kin reported that their loved one received the right amount of care,” Dr. Glass said. “In short, neither ‘overtreatment’ nor ‘undertreatment’ was perceived by most of those who responded to our survey.”

Specifically, next-of-kin reported that:

• 94% of decedents did not receive an unwanted treatment
• 89% of decedents had their end-of-life wishes met
• 85% of decedents died in the way that they wanted to
• 84% of decedents filled out an advance directive, a legal document that provides guidance for health care decisions in case the person can’t make those decisions for themselves
• 83% of decedents had a discussion with next-of-kin about their end-of-life care and treatment preferences
• 83% received the “right amount” of care

The study also showed that those who incurred the highest costs were less satisfied than those who had lower costs. Dr. Glass noted that while “at first glance this might seem counterintuitive, in a closer look, we discovered this higher cost group had died at a younger age than the lower cost group. So, it may well be that the dissatisfaction of the high cost group reflected a disappointment that despite all the efforts and costs, death came earlier than was expected.”

Kaiser Permanente Southern California has long had a commitment to meeting the needs of members in their final stage of life. Susan E. Wang, MD, medical director, Life Care Planning & Serious Illness Care, Southern California Permanente Medical Group, who is one of the co-authors on this study, said 2 important points have been emphasized in clinician trainings on end-of-life care:

• Discuss with members their preferences about where they would like to die. Many members hold strong preferences and are very serious about dying at home and not in the hospital.
• Physicians should take the initiative and start an informed discussion with patients about their end-of-life preferences at the appropriate time.

“We were pleased to see that our work in meeting the needs and desires of people at the end of life was successful for so many of our members, and are working to meet the end-of-life wishes for all of our members,” said Dr. Wang. “We continue to strive to make sure our members are well cared for from their first days to their last days.”

This study was supported by the Southern California Permanente Medical Group.

In addition to Dr. Glass and Dr Wang, authors on this study included Paul M. Minardi, MD, president and chief executive officer, Washington Permanente Medical Group; and Michael H. Kanter, MD, professor and chair, Department of Clinical Science, Kaiser Permanente Bernard J. Tyson School of Medicine.