One topic I often find myself teaching is basic information on ethics in health care. One point I address is the difference between “ethics” and “morals.” We use the words almost interchangeably, but there are differences. For the most part, “morals” is about principles – these things are good, and these things are bad. Ethics, on the other hand, are about process. Those who take this position might even speak of the “calculus of ethics.” Acting as if it’s an equation, if one has the right process, plug in any set of premises and you’ll get a result. There is, of course, a limitation to that idea: if your premises are poor, so will your result be; or, as my best beloved says, “The ethical enterprise is morally bankrupt.” A good logical process can be made useless if the concepts brought to bear are unsound.
Which is, I suppose, what I should have expected when, in his latest opinion piece at the Washington Post, Charles Krauthammer started off with, “Let's see if we can have a reasoned discussion about end-of-life counseling.” (If you don't want to join on line, you can also find it here.) Not that I didn’t agree with his first statement, “We might start by asking Sarah Palin to leave the room. I've got nothing against her…. But there are no "death panels" in the Democratic health-care bills, and to say that there are is to debase the debate.”
Unfortunately, after that promising beginning, the piece rapidly goes down hill. It goes downhill first and foremost because of his apparent lack of faith in those of his first profession. Krauthammer presents in this piece a remarkably poor opinion of physicians, and this is surprising inasmuch as he is himself a Harvard-trained and board-certified psychiatrist. Even though he has long since left medical practice himself, one might still expect some respect; but it just isn’t there.
The topic in question (as, coincidentally for Betsy McCaughey – or, perhaps not) is the content of the consultations on advance care planning for which reimbursement would be permitted in HR 3200. Krauthammer begins with his caveat: “To offer government reimbursement to any doctor who gives end-of-life counseling -- whether or not the patient asked for it -- is to create an incentive for such a chat.” Unfortunately, he then steps away from reasoned discussion.
What do you think such a chat would be like? Do you think the doctor will go on and on about the fantastic new million-dollar high-tech gizmo that can prolong the patient's otherwise hopeless condition for another six months? Or do you think he's going to talk about -- as the bill specifically spells out -- hospice care and palliative care and other ways of letting go of life?
I find this an interesting question for one physician to raise about another. I also find it contrary to my empirical experience in almost 30 years as a chaplain, and contrary to those studies that have been done about care at the end of life. I've never known a physician who wasn't prepared to talk about new treatments or devices. This utterly misses the problem that we see in practice: that physicians have historically been too slow to honor the patient’s wishes for comfort measures, and not too eager. It is axiomatic in the profession that, while a patient might qualify for hospice support when there is nothing more to be gained from therapeutic care and a prognosis of less than six months, by the time physicians acknowledge that there is nothing more to gain the patient lives less than six months – often enough less than six days.
However, this is clearly Krauthammer’s concern; for this is how he ends his piece:
So why get Medicare to pay the doctor to do the counseling? Because we know that if this white-coated authority whose chosen vocation is curing and healing is the one opening your mind to hospice and palliative care, we’ve nudged you ever so slightly toward letting go. It’s not an outrage. It’s surely not a death panel. But it is subtle pressure applied by society through your doctor. And when you include it in a health care reform whose major objective is to bend the cost curve downward, you have to be a fool or a knave to deny that it’s intended to gently point you in a certain direction, toward the corner of the sick room where stands a ghostly figure, scythe in hand, offering release.
Well, Dr. Krauthammer, perhaps it’s not a death panel, because only one physician at a time is involved. So, perhaps you would call them “death deputies?” And with that suggestion, and in light of the bedside experience of so many, I wonder who is calling whom “a fool or a knave.”
This is all, in his mind, justified by a second questionable premise: that a patient’s right to make known wishes for care at the end of life, and to expect those wishes to be followed, is unimportant, or at least less important than the wishes of others. He highlights this with a false dichotomy.
Then consider the actual efficacy of a living will. When you are old, infirm and
lying in the ICU with pseudomonas pneumonia and deciding whether to (a) go
through the long antibiotic treatment or (b) allow what used to be called “the
old man’s friend” to take you away, the doctor will ask you at that time what
you want for yourself — no matter what piece of paper you signed five years
You are told constantly how very important it is to write your living will years
in advance. But the relevant question is what you desire at the end — when
facing death — not what you felt sometime in the past when you were hale and
Of course your doctor will ask your preferences for care when you are dying in the ICU – as long as you are able to speak for yourself. However, that isn’t the purpose of advance care planning, and he knows it. The point of advance care planning is when you can’t speak for yourself. It is to allow those who love you and those who care for you to act as you would wish when you can’t express your wishes.
But, this is not his agenda. “I’ve never taken [my own living will] terribly seriously because unless I’m comatose or demented, they’re going to ask me at the time whether or not I want to be resuscitated if I go into cardiac arrest. The paper I signed years ago will mean nothing.” Well, yes, if he can speak. And if he can’t?
And if I’m totally out of it, my family will decide, with little or no reference to my living will. Why? I’ll give you an example. When my father was dying, my mother and brother and I had to decide how much treatment to pursue. What was a better way to ascertain my father’s wishes: What he checked off on a form one fine summer’s day years before being stricken; or what we, who had known him intimately for decades, thought he would want? The answer is obvious.
So, is Dr. Krauthammer saying he violated, or was prepared to violate his father’s wishes? Those were certainly set down “before being stricken;” but the reason was that they might be reasoned decisions, in line with his principles and values, and not simply emotional reactions. So, did Dr. Krauthammer violate his father’s wishes? Perhaps not; for if they had indeed been communicating over those decades, there’s no reason to think his father changed his mind. On the other hand, it’s also common enough in my experience for families to provide their own subtle pressure, and sometimes not so subtle: “We can’t bear to lose you. Please keep fighting, just for us. We know you’re in pain. We hear that there’s nothing more medicine can do; but please keep fighting, just for us.” I would have to ask the good doctor, the good Harvard-trained, board-certified psychiatrist, how he was certain that he had not projected his own wishes onto his father, if he did not follow his father’s wishes expressed when he could do so calmly and rationally? Really, just whose wishes was he following in that moment that he admits was emotionally charged (as it certainly should be)?
So, given a choice between rational planning and ongoing family communication, and last minute emotional reactions, perhaps swayed by his own wishes, Dr. Krauthammer would choose the latter as serving the patient’s best interest. Well, that raises another questionable premise of the patient’s best interest. While that must be decided in each individual case, there are principles that guide professionals in that process. In this case, both because it is physicians who are faced with these decisions and because Dr. Krauthammer is himself a physician, we might look to the Code of Ethics of the American Medical Association (AMA). Specifically, we can look to “Opinion 2.20 – Withholding or Withdrawing Life-Sustaining Medical Treatment,” which includes this:
If the patient receiving life-sustaining treatment is incompetent, a surrogate decision maker should be identified. Without an advance directive that designates a proxy, the patient’s family should become the surrogate decision maker… In making a substituted judgment, decision makers may consider the patient’s advance directive (if any); the patient’s values about life and the way it should be lived; and the patient’s attitudes towards sickness, suffering, medical procedures, and death.
Or we might look to “Opinion 2.225 - Optimal Use of Orders-Not-to-Intervene and Advance Directives.” It includes these statements:
(1) Patients and physicians should make use of advisory as well as statutory documents. Advisory documents aim to accurately represent a patient’s wishes and are legally binding under law….
(5) Health care facilities should honor, and physicians use, a range of orders on the Doctor’s Order Sheet to indicate patient wishes regarding avoidable treatments that might otherwise be given on an emergency basis or by a covering physician with less knowledge of the patient’s wishes.
The point of all this is that the physician is enjoined and the family encouraged to act according to the patient’s wishes, even when the patient is past expressing them. Thus, while “what we, who had known [the patient] intimately for decades, thought he would want,” may be accurate, the physician at the bedside is called to help clarify between what the patient has expressed and what the family might want for their own needs; and then as best possible to follow the patient’s wishes. To do otherwise, as Dr. Krauthammer implies, could violate the AMA’s Code of Ethics and principles of patient-centered practice.
So, in fact this is far from a “reasoned discussion about end-of-life counseling.” In fact, it’s not really that different than Sarah Palin’s statement; for what is the difference that makes a difference between a “death panel” and a “death deputy?” No, this is another expression of fear – perhaps of Dr. Krauthammer’s own fear – made less obvious by a calm tone of voice. It may sound rational, but that doesn’t make it so; anymore than a good ethical process can make a good decision out of unsound premises. I will grant that in his history Dr. Krauthammer has experience both of deciding in his father’s case and of his own life-threatening illness. However, much of his “reasoning” seems in fact to be his own projection of his own concerns.
I’m all for a reasoned discussion of end-of-life counseling, and of end-of-life care. However, expressing distrust of the physicians at the bedside; lack of awareness of how these problems are experienced in practice; a choice the emotional decisions of the family in crisis over the patient’s decisions made when calm and thoughtful; and an invitation to violate medical ethics don’t make for reasoned discussion. They simply make for more and prettier fear-mongering – as if the rumor whispered could be less troublesome than when shouted, or a mindless placard more rational than a mindless cry.