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We as physicians could step up to the plate and take on our responsibilities in terms of these problems. One thing that we could do is to see it as our obligation, particularly primary-care physicians, to let patients know when they are dealing with something that was life threatening, when they are dealing with an illness that might very well be the illness that "takes them to ground.
It's interesting. If you look back into eighteenth or even nineteenth century America, this was one of the most important roles that a doctor played in the life of his patients. The doctor and the patient engaged in a very formalistic "ritual of warning." You've read about it. You've probably seen it in old movies. It's a darkened room, the patient on one side of a big desk, oftentimes with his spouse, holding hands, the doctor on the other side of the desk shuffling through papers. The doctor looks up and says in a very solemn voice, "John, I'm looking at your lab work here. And, as your doctor, it's my obligation to tell you that it's time for you to get your affairs in order." If primary care physicians reclaimed that cultural ritual as their duty, we would eliminate a major part of the problem. We would eliminate the population of Americans who die without ever knowing that they're dying, without anybody ever telling them that they were up against a terminal illness.
We would at least empower people by giving them that information and they may be able to get what they need by hook or by crook, but at least we could tell ourselves that we had fulfilled that basic obligation as a physician.
In order to do that, we would need to be able to know when patients were terminally ill. Interestingly enough, that is now information that is at hand for a wide variety of disorders. Some cases are crystal clear. If you have renal failure, whether you go on dialysis or not, you have a terminal illness. You have no kidneys. That's terminal. There's no way around that. Even for a transplanted person, it's an interesting question about whether or not they have a terminal illness or at least are at risk of developing life-threatening rejection or something like that. But we actually now have pretty good criteria for identifying within populations of patients those who are at a very high risk of dying. We're not very good at the time frame, and this business of the six-month interval has got to go.
It's interesting that that's not a major problem. The major problem is simply that terminally ill people don't get identified and referred to hospice in a timely enough fashion. Even this year, Kansas City Hospice is faced with the problem that 15 percent of all the patients that are referred to them die within 48 hours of their referral. You can't do a lot of hospice care in 48 hours.
It may also be an ethical obligation for doctors to not only engage in this ritual of warning, but to make sure that the patient has access to appropriate palliative/hospice care. A Physicians Advisory Group to the Pathways Project of the Midwest Bioethics Center developed a wonderful short text outlining end-of-life promises of a physician to a patient. One of these promises is to talk to the patient about hospice care. Not only will doctors determine when you have a terminal illness and help you discover the value of wearing the label "dying patient," but they will sit down with you and plan to make sure that you get appropriate palliative or hospice care. There are a couple ways of looking at that aspect of lesson four. One way is think about dying without hospice care as a lot like undergoing major surgery without anesthesia. Not the best way to go by any stretch of the imagination.
Another way of understanding lesson four is examining the possibility that physicians may be dealing with patients who are going to experience the last chapter of their lives in exactly the way I have experienced the last chapter of my life, namely, that it's categorically the best chapter I've ever known. Clearly one of the things that made it the best is that I have shared it with Pam. But it is also richer, fuller than my pre-cancer living. I feel much more alive. I feel like I have evolved as a human being in these past five years in ways that I never imagined possible. So if doctors don't identify terminally ill patients and engage in this ritual of warning and get them appropriate end of life support, it may be that we ought to think about what's going on as physicians and our death-denying society robbing people, robbing them of part of their lives. Can you imagine that, robbing somebody of a whole chapter of his or her life?