Q: Why to they screw down the casket lids when a patient dies of cancer?
A: To stop the oncologist from saying, “Wait – there’s one more thing that we might try.”
Of course, the joke isn’t fair to oncologists, is it...?
What brought that to mind was this article I found in the “In the News” list on the website of the Center for Practical Bioethics. The story relates to a paper presented at the recent 2008 Annual Meeting of the American Society of Clinical Oncology (ASCO). The paper described results of a research study looking at patients whose physicians had offered end of life (EOL) discussions, with clear information about the patient’s prognosis and all treatment options, including palliative care and hospice. Perhaps we should speak here of two papers, because two papers were presented that, from the abstracts, were clearly related but different results of a single research study. The papers were, “Associations between advanced cancer patients' end-of-life conversations and cost experiences in the final week of life” (B. Zhang et al; abstract here) and “Medical care and emotional distress associated with advanced cancer patients' end-of-life discussions with their physicians” (A. A. Wright et al; abstract here).
According to both abstracts, “Coping with Cancer is an NCI/NIMH-funded, prospective, longitudinal, multi-institutional study of 603 advanced cancer patients. Patients were interviewed at baseline and followed through death…. 188 of 603 patients (31.2%) reported EOL [end-of-life] discussions with physicians at baseline.” At the time the information for these papers was collected 323 had died, including 148 whose doctors had offered EOL conversations. Charts of all 323 were reviewed, and those of patients who had had EOL conversations were compared with the charts of those who hadn’t.
In important ways there were no significant differences between the 148 and the other patients who had died: they “did not differ in socio-demographic characteristics, psychological measures, treatment preferences, attitudes toward doctors or terminal illness acknowledgement.” (Zhang) At the same time, the costs for the patients who had had EOL discussions were 30% less in the last week of life. This was the result of different decisions. “They were more likely to acknowledge being terminally ill, value comfort care over life extension and complete a DNR order. [Also,] patients reporting EOL conversations were less likely to undergo ventilation or ICU admission and more likely to receive hospice.” (Wright)
So, why would only one third of the patients have an EOL discussion with their physicians? “Physicians are concerned that end-of-life (EOL) discussions may distress terminally ill patients, and may not offer benefit.” (Wright) There is the fear, sometimes articulated, that giving patients bad news, however accurate, might lead the patient to “give up.” However, that isn’t borne out by this study. Patients who had EOL discussions were not in fact more likely to be depressed or anxious. (Wright) Again, they “did not differ in… psychological measures….” (Zhang) They were, however, more informed about their prognoses, and more likely to make decisions that were reasonable in light of those prognoses, and especially “to value comfort care over life extension.”
The news article seemed to me to express surprise that so few of the patients in the study had had end-of-life discussions with their physicians. For me, and I expect for anyone experienced with patients approaching the end of life, the response was, “Well, duh!” It is axiomatic that all too often patients are not informed about hospice services until they’re too debilitated to really benefit from them. The critical criterion for admission to hospice is a medical prognosis that the patient will live less than six months. My colleagues, chaplains in hospice, still speak of how often patients are admitted to hospice so late that they live perhaps six days, because the oncologist waited so long to have the end of life conversation. A document available from the Center for Medicare Services (CMS) notes that
The average length of stay has been steadily increasing. However, the long lengths of stay are becoming longer. For example, in 2005, Mississippi, Alabama, and Oklahoma had an average length of stay of 122, 113 and 108 respectively, while the national average was 67 days.
That is, for patients told they have an expectation of living six months or less (180 days), the average length of stay was only about a third that. But, let’s also note that 67 days is the average. If “long lengths of stay are becoming longer,” we need to recognize just how many patients have much shorter lengths of stay so that the average is not higher.
So, this continues to be a problem. Even as we seek to develop better techniques and programs for palliative care, physicians are still not clear with their patients that a time comes when medicine has nothing more to offer for therapeutic benefit (again, as opposed to palliative benefit) – probably because the physicians are not being clear with themselves. I have certainly encountered physicians for whom their work was a battle with the disease. These physicians are, of course, determined and almost single minded in this battle (and, after all, those are the very characteristics that helped them survive medical school and residency). Unfortunately, they become analogous to the person of faith who “is so heavenly-minded as to be no earthly good.” They focus so completely on the disease that they lose track of the person who’s suffering from it. This is not to say that they don’t care; they care passionately. They simply conflate and confuse doing their worst to the disease with doing their best for the patient; and those goals aren’t always the same.
I commend these abstracts to your attention, as well as a number of other abstracts on similar subjects from the ASCO Annual Conference. It gives me some hope that more physicians will note them; for, if it’s axiomatic for non-physicians that these end-of-life discussions have great value, it’s also axiomatic physicians will take these things more seriously if they hear them from other physicians than if they hear them from the rest of us. With these and other continuing studies, we will eventually help physicians see that these end of life discussions, however difficult, are best for their patients; and what is best for patients is a goal we all share.