A World of Ideas; 235; Ruth Macklin Part 2 of 2

RUTH MACKLIN: It's certainly not the case that if you, Bill Moyers, or any other national broadcaster does not publicize the need that one particular child has for a bone marrow transplant or a liver transplant, it's not the case that no child will get it. It may be true that that particular child will not get it.

But there are bone marrow transplants. There are liver transplants. And there's a system for allocation. What people who come to a broadcaster are looking for is special privilege.

BILL MOYERS: In this half hour, Ruth Macklin talks about the mortal choices that doctors and all of us must make in our daily lives. I'm Bill Moyers.

WOMAN:--with him. He's aware of the terminal nature of his illness.

BILL MOYERS: Once a week these doctors and social workers convene to discuss their treatment of children with serious illnesses.

RUTH MACKLIN: There is an ethical tension between helping families or patients maintain hope on the one hand, and at the same time being honest about what the outcomes will--

WOMAN: I think the objection that this particular mother has is the day that she brought him for screening, there happened to be child with--

BILL MOYERS: Dr. Ruth Macklin is an outsider. She's a philosopher, a PhD, not a physician.

RUTH MACKLIN: It's only the worse stories that leads people to conclude that you shouldn't say anything-- and I think that's the wrong conclusion-- is individual physicians-- usually physicians-- who tell a patient you have six months. And the patient gets devastated and depressed and then goes on to live for--

WOMAN: A year.

RUTH MACKLIN: --two years in remission or something. And then later--

WOMAN: But then also just to make plans.

MAN: For all we know, this child may only live six months, but could live longer. But the family--

[INTERPOSING VOICES]

BILL MOYERS: And she is here to listen to the moral dilemmas doctors face every day. For more than 15 years, Ruth Macklin has taught medical students and professionals how to think through the moral obligations of their work.

But it isn't just doctors who grapple with tough decisions about how to care for the sick and suffering. In her book Mortal Choices, Macklin explores philosophical problems that can confront any of us at any time-- patient and family, parent and child, the living and the dying, and the journalist too. We talked at her home in New York.

[interviewing] What's a philosopher doing on the staff of a hospital?

RUTH MACKLIN: Trying to assist doctors and other health professionals to think clearly about some of the dilemmas they face, some of the unprecedented problems, and also, I think, trying to help them understand why there are moral problems here.

BILL MOYERS: What do you have to offer that they need?

RUTH MACKLIN: Well, let me start with saying what I don't have to offer. I don't have easy answers. I think if intelligent, concerned physicians, nurses, and other health professionals who care about their patients and have been thinking about these issues have not been able to resolve them, I or any other philosopher cannot come in with a magic wand and provide answers.

But there are some ethical principles that underlie thinking about the ways of thinking about these issues. And there are also analytic skills that, as a philosopher, I learned in graduate school and applied in my writing.

BILL MOYERS: It must be difficult for you because you have no turf in science. The patient doesn't think, summon my ethicist. Bring me my ethicist. The hospital says this person may be arguing for letting someone die with dignity when that's not in our legal or financial interest. So it must be hard for you to find standing room on that turf.

RUTH MACKLIN: Well, there are-- I engage in some, but not very many, ethics consultations at the bedside. Some of my colleagues do a great many more consultations. They're called by a physician usually, sometimes another health professional, and possibly by a patient. So there is that activity that goes on in some medical centers.

The mechanism in which I would most normally come into play in a consultative capacity is hospital ethics committees. There are now about 60% of medium to large size hospitals in this country that have ethics committees. And that's typically a forum for the case consultation.

RUTH MACKLIN: A patient may request that a-- if the patient knows there is a ethics committee-- patient may request. Typically, or more typically, the family of a patient requests that an ethics committee be brought in on a case. And, of course, physicians or any other professional involved may call the ethics committee.

And that is, I believe, a good mechanism. And hospitals should have them. And they should work well.

BILL MOYERS: If you were on the ethics committee of public television, I would ask you for counsel in responding to the parents who come and say, our child, our grandchild is dying of leukemia or cancer. And we need a bone marrow donor, and we can't find them. Would you use your air time to promote his need?

And the question is, well, there are three others who've written and called and asked. What would be your response if you were on my ethical committee?

RUTH MACKLIN: I would counsel the broadcaster, the journalist not to be unjust by publicizing the case that comes to him when there are many others out there that will never gain the attention. It's an injustice in the allocation of these resources to allow the person who gains access to a person who's in a national position of national visibility to come to that individual and say, could you make this appeal?

There are not only the other three who may have written or requested it, but there are the hundreds of others who don't have access and can't gain access.

BILL MOYERS: But that's troubling because you're asking me not to be just in the particular sense in which I have the opportunity to be just. And the question is, if you don't do something because you can't do everything, then will you wind up not doing anything?

RUTH MACKLIN: I don't think so. And here's why. It's certainly not the case that if you, Bill Moyers, or any other national broadcaster does not publicize the need that one particular child has for a bone marrow transplant or a liver transplant, it's not the case that no child will get it. It may be true that that particular child will not get it.

But there are bone marrow transplants. There are liver transplants. And there's a system for allocation. What people who come to a broadcaster are looking for is special privilege. They want their case in the limelight, and rather than be put in the queue or in the lottery.

RUTH MACKLIN: So a child who's in need of a bone marrow transplant will be on a list. A child who's in need of a liver transplant will be on a list. And there's an organ sharing network. And there are bone marrow procurement networks that exchange information and that place people on these lists and, moreover, use other criteria in moving people up and down the list.

What the people who come to you are seeking to do is bypass the list altogether. So it's not that no one will get these bone marrows. It's just that that particular child won't have a better chance at it.

RUTH MACKLIN: Now my question is, why should the family who gains access to you be given more than fair chance when a much lesser chance does indeed exist, because we're talking about many people in need?

BILL MOYERS: Well, the honest but unphilosophical answer is that you look these people in the face. You see them as sitting thing as close as you and I are sitting. And you see the photographs or you know the child.

RUTH MACKLIN: Do they deserve it more because of that? I mean, this comes into ethics in a strange way. It's the case you know that prompts sympathy and concern. A child across the world who's dying of liver failure is a statistic. The child across the room or across the street is someone you know and can see.

I'm not arguing that should never enter one's ethical sensibilities. But it's not an evenhanded way, nor a perfectly just way. It's emotionally difficult to deny the person who makes a personal appeal.

BILL MOYERS: But there is no perfectly just way, not in this world. And in my tradition, the stories of the miracles in the Testament of Christ is that He healed the lame He saw, not those He didn't see. The woman who came to Him looking for grace didn't preclude others from coming. But He dealt with the one at hand.

RUTH MACKLIN: Well, that's an interesting analogy. The most any one individual can do is deal with the case at hand. The most any individual doctor or healer or religious figure can do is deal with the case at hand because he can't be everywhere at once and can't be expected to go across town or across the earth in order to be able to save a life there.

But there do exist mechanisms. And, again, I'm being repetitive. But there are mechanisms for a more just allocation. Now my objection to the individual making the judgment is, it's not systematic. It is ad hoc. And with all due respect to broadcasters and others, it seems to me there's not an expertise in making these allocation decisions.

BILL MOYERS: Only in news. This is news. This particular child needs bone marrow donor. That's news.

Right. A complete presentation of the news possibly should also add, how many other children need bone marrow transplants? Where are they located? Are they more likely to get a bone marrow transplant if their parents are knowledgeable and gain access to a national news broadcaster than they would be if they lived in the inner city? That's news too.

RUTH MACKLIN: Who gets onto the news and the means of getting onto the news is something that the news perhaps ought to present. The news is not complete by presenting the need that child has.

Now, of course, you could take up the whole news every day by listing all the children in the nation. But rather the fact of how many children are there who need bone marrow transplants, what is the supply of bone marrow and the compatibility with the donations, how might bone marrow donations be improved so there would be a much better supply, enabling more children who need it-- that I think should be news in a sense too.

BILL MOYERS: But if you're asking the individual to advocate when presented with an opportunity for particularized justice, who is-- and in the interest of distributive justice-- who then is responsible for so improving the process or system of distributive justice that equity is more possible?

RUTH MACKLIN: That's an important question. And it's a policy question to which I knew the answer. I think we have to fashion a response in our society and make people responsible, that is, have some systematic way of making these judgments.

BILL MOYERS: So I had a young doctor at a hospital in New York say to me the most difficult moment he had was on Saturday night duty in the emergency room when two people arrived simultaneously. One was a recognized drug abuser, known in the neighborhood. But this was his first time in the emergency room except for minor stuff. And the other was a 65, 70 year old man who was suffering a heart attack from the neighborhood.

They only had time to deal, at that particular Saturday night, with one of those patients. And he looked at the drug patient. He said in effect, you're your own victim. You have done this to yourself. He looked at the heart attack victim and said, you're here not because of something you have willfully done, and you deserve the treatment. He said, I'm not going to tell you how I decided what I actually did. But that went through my mind.

RUTH MACKLIN: That's a tough one, isn't it? And it's a tough one, because it's not only the drug addict who, as doctors often look at addicts and alcoholics, you did it to yourself. We're also comparing an age difference too.

And there are some people in our society who are arguing that when you have a choice of two patients and you can only treat one in the emergency room, in the intensive care unit, or in another scarce resource, situation of scarce resources, you should pick the younger patient, regardless of what that patient's condition or prognosis is. This is one of the most difficult areas I find, picking the criterion or the principal for allocating these scarce resources.

RUTH MACKLIN: Should age enter in? Should it ever enter in? Or should it never enter in? Should it enter in sometimes? Should the prognosis be the overriding factor, the likelihood that you can restore this patient to the condition, something like the condition he or she was in before coming to the emergency room? Should what caused the disease or the illness enter in, as in this case?

BILL MOYERS: I said to the doctor-- I said to the doctor, how do know that the elderly man-- 65, 70 doesn't seem so elderly to mean now-- but I said how do you know that he wasn't a lifelong smoker and that his heart condition had not been the cause of a willful--

RUTH MACKLIN: Let's add he was a lifelong smoker. He ate a lot of cholesterol against the advice of his physician. He never exercised a day in his life. And when told repeatedly, especially in today's health conscious society, that your lifestyle is contributing to your heart disease and may indeed lead to an earlier death and an earlier heart attack, the man shrugged his shoulders and says, that's it. It's my life. Now suppose we knew that. Is there, ethically speaking, a difference between the two cases?

BILL MOYERS: Is there?

RUTH MACKLIN: I think there's not. But many will argue there is. They'll argue on two grounds. They'll argue, first, that this is a matter of degree. Not everybody who engages in failure to attend to healthy lifestyles comes into the emergency room with heart attacks caused by their lifestyles. But sooner or later, every intravenous drug user will infect a heart valve, get a clot, have deep vein thrombosis, or one of the-- or have an overdose. One of the consequences of drug addiction is a very poor prognosis for life.

I do have a supposition about what's going on in these cases. Drug addicts and alcoholics, but particularly drug addicts, are viewed as a very undesirable class of people in our society. So an additional value judgment, in addition to the judgment that you did this to yourself, another value judgment is operating.

RUTH MACKLIN: And that is the value judgment that people who lead the lives of drug addicts are engaging in something illegal, self-destructive. And with many other bad societal consequences, something like these guys really don't deserve to live as well as someone else, whereas the 70-year-old may have been an upstanding citizen, may have been a bank president, or contributed in other ways to society.

So I think there are value judgments about lives and lifestyles that enter in as well. And you can tell by the language that these are not desirable patients. And there may be an edge of dishonesty in a physician saying, you did this to yourself so you don't deserve the treatment, when here's this 70-year-old about whom, supposedly, we know that he also did not attend to his healthy lifestyle.

BILL MOYERS: Life is certainly more than-- medicine is certainly more than a matter of medicine, isn't it? I mean, it is a matter of theology and philosophy and ethical--

RUTH MACKLIN: And human interaction.

BILL MOYERS: Do you think life is sacred?

RUTH MACKLIN: I think life is valuable. I hesitate to use a word like sacred because terms like that sometimes-- a conclusion that's sometimes drawn when one says life is sacred is that it may never be shortened or that humans may not intervene in ways to fail to prolong it when the means exist.

Sacred is, in part, a religious term. And although it has a perfectly good meaning use in the religious context, in the secular context, where there are people with different religious beliefs and particularly in a pluralistic society like ours, it may lead some people to conclude that some individual or religion's views about what's sacred is the right way to go.

BILL MOYERS: If you had terminal cancer, would you want to be told?

RUTH MACKLIN: Would I want to be told? Yes.

BILL MOYERS: Did you know there was an AMA poll not long ago-- American Medical Association poll, study-- which said that only 12% of the doctors in America would want to disclose to their patients if they had to diagnose terminal cancer. Now why is that? Why--

RUTH MACKLIN: Was there another poll that asked how many American citizens would like to have it disclosed to them?

BILL MOYERS: I didn't see that.

RUTH MACKLIN: Well, I think that's important, you know? These doctor polls, what doctors would want to disclose, that's half of the story. What's more important here is what people want to know. Now there are some people who don't want to know. And they usually make it quite clear to their physicians that they don't want to know.

BILL MOYERS: But why would doctors not want to disclose the facts of science to someone whose life has been placed in his custody?

RUTH MACKLIN: Here's a typical response by a doctor. We take an oath that tells us to do no harm. We try to carry out that oath with our patients as much as possible. If I have bad news, such as my patient has terminal cancer, and I tell the patient that bad news, I'm doing harm. I've heard these words spoken.

My patient will get depressed. As one surgeon said, I wouldn't want to tell this to a patient in a hospital room on the sixth floor with a window in it. There is not one documented case of any patients jumping out of any hospital windows when doctors disclosed to them their diagnosis.

RUTH MACKLIN: Now one has to be a little suspicious of physicians who use the do no harm rationale for not giving the patient what is clearly an undeniably bad news. One suspects and I think there's some evidence that it makes doctors very uncomfortable to be the ones to bring this bad news.

And, furthermore, doctors feel a loss of power and a loss of control. Not only are they telling the patient you have this terminal disease, and so the doctor is the messenger with the bad news, but the doctor is also acknowledging to the patient, I can't help you anymore. Or, at least, I can't help you by curing your disease.

RUTH MACKLIN: Now there is, of course, something the doctor can do. The doctor can try to give the patient support. The doctor can assure the patient that he or she will continue to care for the patient and give palliative measures, which physicians have been notoriously poor at doing, namely controlling pain in suffering and dying patients.

To withhold the information from the patient is not only arrogant because it's the information that rightfully belongs to the patient, but it also may-- and I did have a couple of examples in Mortal Choices-- it may cause more harm to the patient.

BILL MOYERS: Depression in the families.

RUTH MACKLIN: Depression and uncertainty. Nobody is talking to this patient. When nobody talks to you, not only do you have the uncertainty, but you're suspecting the worst anyway.

BILL MOYERS: You described the family coming into the hospital room of the terminally ill patient and just sitting there for hours without saying anything because they can't speak the unspeakable.

RUTH MACKLIN: That's right. And they can't because they can't talk about what is really happening. They can't talk about anything. And they're fearful that the patient may ask.

The patient, meanwhile, seeing the family and the physician come there with this morbid, terrible silence not only would be anxious about that, but also gets depressed because what a patient needs most in that circumstance is communication, interaction, and family warmth. But all of that was stymied and stultified by not telling. So there's really two things here, ethically speaking.

BILL MOYERS: That's what I was going to ask you.

RUTH MACKLIN: Two things-- One is the patient's right to this information. Information that the doctors have, to whom does this information belong? Rightfully, it belongs to the patient.

The ethical analysis here is in terms of rights-- the right to information, the right to the confidentiality of information as well. But the information belongs to the patient by right. And so the patient has, if the patient expresses the wish for it, the patient has a right. That's one aspect.

RUTH MACKLIN: The second is the harmful consequences that can flow from not telling. What the doctors are arguing is, we will do more harm by telling than by not disclosing because we're bringing this bad news, and we are under this oath to do no harm.

However, evidence-- and there's ample evidence-- shows that not only do patients often know even when doctors choose not to tell them, but that they can be harmed as much by the uncertainty, by the silence and the stonewalling that takes place.

BILL MOYERS: And what you're saying-- I hear you saying-- is that there is rarely a single moral position on the issues that get brought to you and your colleagues on the ethics committee.

RUTH MACKLIN: That's right. There's rarely a single clear answer or a single right answer. But one has to come to a resolution. And there may be overriding reasons, reasons that, in the end, out balance or over balance one side rather than the other. But I think you can only come to those answers after thoughtful reflection.

Just to give one example-- on one of the committees that I sit on, a hospital ethics committee that looks at individual cases, those case consultations that are brought to it, the average length of time that the committee deliberates and-- I was about to say hears evidence. It's not really evidence or testimony-- but invites spokespersons, hospital administrators, physicians, the patient of course, and other expert, the average length of time is two hours. And this is for busy people who are otherwise attending to patients, performing surgery, or doing these other things. So it requires a good deal of reflection and careful thought.

BILL MOYERS: The paradox is that physicians are not paid for talking to philosophers. They're paid for doing procedure. And I'm wondering if that's not a deterrent to ethical reflection.

RUTH MACKLIN: I think it's worse than you have just described it. Physicians aren't paid for talking to patients either. There is no reimbursement for having a conversation with a patient. I mean, it's a sad fact of today's practice of medicine.

It's surely true that physicians are not paid for talking to philosophers or ethicists. But neither, strictly speaking, are they paid for talking to a neurology consultant or an oncology consultant or a radiology consultant.

RUTH MACKLIN: They're paid for doing procedures under a scheme that pays doctors for the higher technology procedures that they perform. It places a premium on doing procedures and tends to minimize what's very important in caring for people. And that is talking to them, their families, and having consultations with medical specialists and perhaps ethicists.

BILL MOYERS: [voice-over] We'll continue this conversation with Ruth Macklin on another edition of the World of Ideas. I'm Bill Moyers.