At a time when there seems to be a great deal of focus on the idea of advance care planning, living-wills and end-of-life and palliative care, all of us in the field are confronted by patients and families that seem to “want everything imaginable" done to preserve the life that they perceive as slipping away before their eyes. Sometimes it is from an illness that has existed and progressed over time such as a malignancy that has gradually spread throughout the body despite often horoic attempts at staving off its continuence. Sometimes it is the end stages of chronic lung or heart disease with patients having been in and out of intensive care and often at the mercy of continuous oxygen therapy and almost immobilized because of shortness of breath. More and more often it is the final and terminal phases of dementia with its gradual erosive effect on mind, memory, judgment, awareness and personality to the point that everyone in the family agrees that their loved one is “no longer there” meaning that they are no longer able to interact in a meaningful way with their loved ones or the world around them.
Yet all of us in practice are aware of the degree to which individuals, including many very elderly patients, many of which are in retirement and assisted living residences and in long-term care facilities either at their request, or more often at their family’s request which may have been muted, modfied by a living will, although for many such step was never taken. Because of deficiency in communication between those who end up reciving care that is often futile in its inability to achieve clinically meaningful goals of confort and gentleness during the dying period a lot of effort has gone into encouraging people to “have the conversation” with their POA for personal care which is not something people are always comfortable doing. Writing down one’s wishes after the discussion helps family members under a time of great stress and anguish remember what treatments were requested to be provided and those that were categorically refused.
With this in mind it was refreshing and illuminating to read an article that actually came out some years ago by a physician, Dr. Ken Murray, in which he described the overwhelming evidence that physicians in general, even when they have all the newest technologies available, often choose end-of-life treatment decisions that are focused primarly on comfort and not on what are often termed heroics although in modern medicine one can do quite remarkable things relatively simply which might not categorize them as heroic from a physician’point of view. His piece was called “How Doctors Die” and this was followed up by a second article responding to comments about the evidence to support his contention.
To quote from Murray’s articles, “It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.”
He continues, “Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).” In the May 2011 issue of Annals of Long Term Care an article was published on this topic as it pertains to those frail elders in long-term care.
After exploring many of the factors that result in the provision of care that has little chance of meaningful benefit and may merely prolong suffering, he says the following, “Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.” He concludes with these words, “If there is a state of the art of end-of-life care, it is this: “death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night…..Like my fellow doctors.”
Dr. Murray provides the requisite evidence in the second article, Doctors Really Do Die Differently (August 29, 2012) and finishes with this comment, “We don’t like to think about death. But that avoidance is one reason so many Americans fail to arrange an advance directive, even when they are severely ill. When patients of mine would come to my office accompanied by a family member, I often asked the patient how he or she wanted to die. I didn’t do it because the patient was on the brink of death, or even sick. I did it because I wanted the patient to think about the question and also to make sure that a loved one got to hear the answer. Unwanted futile measures, prolonged deaths, and hospital deaths remain commonplace in America and many other places. But they don’t have to be. It just requires our doctors and, no less, the rest of us to come to terms with the inevitable.”
It is incumbent on all physicians to help their patients and families have these important “conversations” not in the midst of a crises but when they can calmly consider their wishes and values and how they see their future. Like wills, once completed most people will take comfort knowing that perhaps they have decreased the anguish and stress that will be experienced by their families when difficult decisions have to be made.
