Most older individuals received end-of-life care that was in keeping with their wishes, concludes a study of 1542 decedents who had received care through the Kaiser Permanente Southern California healthcare system.
“Our study of decedents paints a clear picture,” said lead author David Glass, PhD, a research scientist at the Kaiser Permanente Southern California Department of Research and Evaluation and lecturer in the Department of Health Systems Science at the Kaiser Permanente Bernard J. Tyson School of Medicine, Pasadena, California.
“Most older decedents are receiving end-of-life care that is in keeping with the care and treatments they prefer,” he told Medscape Medical News. “[B]oth those who wanted physicians to ‘do everything’ to save a life and those who wanted a less intrusive approach reported that their end-of-life wishes were being met,” Glass commented.
The study was published online in JAMA Network Open.
These results differ from those of other studies in that these results show a “generally positive picture of end-of-life care,” the authors point out.
Two factors many account for this. One is the age of the population, which included only individuals aged 65 years or older. The other factor is that many studies do not focus on patients who have died. Because the goal of end-of-life planning is to optimize care at the end of life, “studying patients who do not die is a biased approach,” the authors note. “It is intuitive that the various elements of advance care planning will have more relevance and be more readily adopted by older individuals who ultimately died.”
Details of the Results
The investigators set out to examine how well the end-of-life wishes of decedents aged 65 years or older had been met during their last year of life. The study involved three planned samples of family members or informants who were identified as the primary contact in the medical record of Kaiser Permanente Southern California decedents.
The first sample included 755 decedents who were 65 years or older, had had two or more visits in the last year of their life, and had died between April 1 and May 31, 2017.
The second included 332 decedents, also aged 65 years or older, whose costs of care in the last year of life were in the top 10% of the costs of care of the entire cohort.
The third sample included 655 decedents whose costs of care were less than those in the top 10%.
Most of the deceased patients had discussed their end-of-life wishes with close relatives or had completed an advance directive. The authors report that 82.6% had discussed end-of-life care, and the next of kin professed high levels of knowledge (79.7%) about preferences and familiarity with healthcare decisions (91.2%).
In addition, 84.1% of the decedants had completed an advance directive; 55.4% reported having had an in-depth discussion; and 9.7% had said they had had some discussion about end-of-life preferences.
Most decedents (88.9%) received treatment that was concordant with their end-of-life wishes, and most (82.5%) believed that the right amount of care had been given. Only 5.9% received treatment that they did not want.
Among patients whose care had incurred the highest costs, end-of-life preferences were met at lower rates than those whose costs of care were lower (80.1% vs 89.6%). Those whose costs of care were high died at a substantially younger age than those whose costs of care were lower. Half of the patients whose costs of care were high died between the ages of 65 and 74 years. Among those whose costs of care were lower, one quarter did so.
Limitations and Generalizability
One of the limitations of this study is that it used surveys that had been completed by next of kin. This is “an imperfect lens into the thoughts and feelings of decedents,” said Glass. “Next-of-kin reports will inevitably involve some error. However, researchers in the end-of-care area have considered and studied this carefully and concluded it is a creditable, if not perfect, approach to measuring end-of-life issues.”
Because this study was limited to decedents in the Kaiser Permanente Southern California healthcare system, Glass noted that one must be cautious about generalizing these findings to patients elsewhere. “Within our healthcare system, there has long been a commitment to meeting the needs of our members at the end of life, which includes training for clinicians,” he said. “That said, we did find in looking at other studies that those which focused on decedents age 65 and over reported results much like our own on a variety of measures.”
He added that it “makes great intuitive sense that people focus more on end-of-life issues as they age and approach death. The inexorable march of time naturally comes to the forefront as one ages, so we don’t really expect our results are unique to our healthcare system, but a broader study would be needed to prove it.”
The research was supported by funds from the Southern California Permanente Medical Group. The authors have disclosed no relevant financial relationships.
JAMA Netw Open. Published online April 6, 2021. Full text
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