There is a saying in ethics: you can’t get an “ought” from an “is.” Descriptions of the world as it is do not reveal truths about the world as it ought to be. Even when descriptions of real-world conditions suggest that something is seriously wrong — that our actions are causing unintended and avoidable harms to ourselves, to others, to our common environment — reaching agreement on how we ought to change our thinking and our behavior, and then putting these changes into practice, is hard. Efforts at reform may fail again and again, but we need “is” to understand how to get to “ought.” In health care work, describing and reflecting on current conditions can shed light on persistent ethical challenges. Palliative care workers who focus on the relief of suffering and other goals central to the care of the sick observe and experience many such challenges daily.
In the United States each year, 2.5 million people die. Because cause of death is often a condition typically associated with age, Medicare billing-code data offers a reliable way to understand where older people were, day by day, as they approached the end of their lives. A recent article by Joan M. Teno, health services researcher at Brown University, and her team, published in JAMA in February 2013 and subsequently picked up by the media, compared samples of Medicare patients who died in 2000, 2005, and 2009. Each sample included nearly 300,000 patients, all of whom had a medical diagnosis of cancer, chronic obstructive pulmonary disease, or dementia for the final six months prior to death. This data suggests that these patients were hospice-eligible and their deaths were not unexpected.
Digging into the data, the researchers found that over the course of this nine-year period the percentage of patients who died in hospice increased. However, these hospice referrals tended to come only after dying patients had spent time in the intensive care unit. That is, the intensity of treatment near the very end of life first spiked sharply upward. As Teno and her co-authors explain, “Site of death, as noted on a death certificate, only provides information on where a person was at the moment of death,” while understanding the end of life as an “experience” involves looking at all places of care, the transitions between these places, and when and why these transitions occurred. They conclude that, even with more frequent referrals to hospice and the expansion of palliative care programs in hospitals over the period they studied, “the notion that there is a trend toward less aggressive care” may be unfounded.
Reading Joan Teno’s careful research and analysis in this article and others, I am reminded of the technique of Jan van Eyck, the 15th century northern European painter who was the first master of the new medium of oil painting. Analysis of van Eyck’s works reveal that he applied layer upon layer of translucent paint to create the impression of light that shapes space and reveals surface and texture. (The Getty Museum has created this public website of images from its recent documentation of van Eyck’s “Ghent Altarpiece.”) It was not a quick or simple way to work, but it built up the light. So, too, does the science that describes, day by day, layer by layer, the complexity of the end of life in our society, and that suggests the complexity of the work needed to change this experience. If the picture that emerges from this study — of the ICU as the route to hospice — troubles us, are we willing to think and act differently? And how much earlier in the journey?
Nancy Berlinger, a research scholar at The Hastings Center, is the lead author of The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care near the End of Life, just published by Oxford University Press. This post first appeared on the Oxford University Press Blog.