Culture and Sanity at the End of Life

In this issue of the Journal of the American Geriatrics Society, we gain more insight into an interesting question: do people who worked in healthcare use healthcare differently when they become ill compared to persons who did not work in healthcare? The general hypothesis is that they must; of course, physicians and nurses realize that as you get sick, the benefits of modern medicine slowly begin to decrease and can even become harmful. However, the growing body of research seems to suggest the opposite. In reality, populations of people have pretty similar utilization patterns regardless of whether they have worked in healthcare. In this issue, Bynum et al cleverly link the Nurses’ Health Study (NHS), a cohort study with a population of over 120 000 female nurses with 42 years of followup, to the Medicare claims data to explore utilization patterns among people with Alzheimer dementia and related disorders (ADRDs) and heart failure (HF). In sum, their findings were consistent with prior studies (ie, nurses and nonnurses use healthcare similarly). Even though we are about to discuss how this article highlights that the culture of healthcare needs an upheaval, there are some things to be excited about in this article. First, the fact that nurses and nonnurses use healthcare similarly means that the NHS data set may provide a rich source to study questions of utilization that may be generalizable. The NHS is one of those beautifully conceived and executed endeavors that will continue to provide many returns on the initial investment. Prior to this analysis, a study using the NHS exploring utilization would have been criticized based on the belief that nurses are different and not generalizable to the larger population. At least for healthcare utilization questions about ADRS and HF, this article shows that this is not true. Researchers should eagerly begin answering important questions about utilization that claims data alone are not able to answer. Second, some of the trends about use of care at the end of life are encouraging. The facts that approximately 55% of people with ADRDs and approximately 45% of people with HF are using hospice in the last 30 days of life are evidence of improved use of hospice. Given that hospice is associated with quality, these increasing numbers are encouraging. Yet, the differences Bynum et al found between the nurse cohort and the nonnurse cohort for the outcomes of invasive interventions, death in the hospital, intensive care unit stay during terminal hospitalization, and hospice use only ranged from 2% to 4%. Unquestionably, the differences in end-of-life care patterns are statistically significant and clinically meaningful, but they are unremarkable. The study nurse population is composed of highly educated women, with high health literacy and experience with illness. In our opinion, the differences observed are modest and not of great importance. In the use of acute care hospitalizations and post-acute care at the end of life in the last 6 months of life, there were no differences in the populations, similar to previous findings of physician utilization patterns in the last months of life. Beyond education in general, bedside nurses arguably spend more time with patients and families facing serious illness than any other provider in healthcare. If the sum effect of this education and experience results in only modest differences in outcomes at the end of life, how can we expect any behavioral or educational intervention to have a consequential impact for end-of-life care. This leads us to the next most obvious question: If education and experience with serious illness lead to only small differences in end-of-life outcomes, what would move the needle? If we want to get serious about addressing the issue of high-cost, low-value care at the end of life (eg, terminal hospitalizations for patients with chronic progressive illness or invasive interventions at the end of life that are unlikely to improve survival or quality of life), we need a cultural shift and a system overhaul. Over 25 years ago, the Robert Wood Johnson Foundation funded the Project on Death in America as part of a national effort to change culture and the experience of dying in America. And over the ensuing decades, we have seen a change in culture. This includes the growth of inpatient, outpatient, and community-based palliative care programs. Greater percentages of persons facing the end of life utilize hospice care. There is also some level of acceptance of our own mortality seen in mainstream society through the popularity of the Conversation Project, Death Cafes, and Atul Gwande’s book Being Mortal spending over 68 weeks on the bestseller list. Yet, when only DOI: 10.1111/jgs.16043