"It's the quality of survival that's important"

Interview with Dr. Christiaan Barnard.

Dr. Christiaan Barnard, the distinguished South African cardiac surgeon who did the world's first human heart transplant in December 1967, was recently in India to give the BPL Mobile "Achievers of the World" Lecture on "Transplantation and health in general". Frontline Editor N. Ram interviewed him in depth in Coimbatore, and the first part of the interview, focussing on developments in heart transplant and cardiac surgery and life and work in apartheid South Africa, was published in the October 31, 1997 issue of the magazine.

This is the concluding part of the interview. It covers the general experience of organ transplantation; the major problem of organ rejection and immunosuppression, and new thinking on this subject (including possibilities of taking a quite different route to promote 'tolerance' and achieve a 'peaceful truce' between the patient and the donated organ); the artificial heart and temporary or interim artificial devices to tide over the crisis; commercial trafficking in kidneys in India; social and legal obstacles in the way of a large-scale national organ transplantation programme; DNA research and the prospect of animal organ transplants enhanced through genetic engineering; the goal and dilemmas of medicine, in terms of prolonging life vs offering an acceptable quality of life; euthanasia; some other medical-social and medical-ethical issues; Dr. Barnard's post-retirement activities, including fiction writing; and his long view and self-assessment.

Dr. Barnard, you've won numerous awards and professional awards. But why are great surgeons not given the Nobel Prize for Medicine?

Well... Alexis Carrel was a surgeon and he got the Nobel Prize (Carrel won the Prize in recognition of his work on vascular suture and the transplantation of blood vessels and organs). Then (Joseph E.) Murray and someone else whose name I have forgotten (E. Donnall Thomas), who introduced kidney transplants and bone marrow transplants, got the Nobel Prize (in 1990). I personally think one of the major reasons - because I was very popular and was actually nominated for the Nobel Prize by one of the South American countries - was that I was a white South African. It would have been unpopular in Scandinavia to give the Nobel Prize to a white South African.

May I now turn to a wider field, the transplantation of organs generally. Immunosuppression, the use of better drugs to prevent organ rejection, which enabled the take-off in the 1980s of transplantation of various organs. The rejection of the transplanted heart by the patient's immune system was overcome to some degree by the introduction of the immunosuppressant, cyclosporine, and newer drugs. Is this the way to go? Is this the only option you have medically to counter rejection?

Well, you see, the problem is this. The immune system of the body recognises the transplanted heart as not belonging to it. Automatically, it will then fight it, just as it fights an organism that enters the body. To get that heart to live for any length of time, we have to suppress the attack of the immune system on the transplanted heart. There's nothing else you can do. Otherwise, if you just leave it, it will be rejected within a week or two and it won't function any more.

A very large number of heart transplants and kidney transplants have been done and they are quite routine now. As for liver transplantation, progress has been rather slow.

No, they're also doing very well.Okay. Lung transplantation?

Not doing that well now. Lung and heart-and-lung, that's not doing very well. Because I don't think that they are able to monitor rejection that well in the lung. And they get such serious changes in the air tubes, the bronchioli. Heart-and-lung transplant has not given such good results and most people now try to do just one lung or two lungs - they seem to do better.

And transplantation of all or part of the pancreas?

They're trying to do that too.

Does it all come to the question of rejection? Is that the hard rock against which organ transplantation comes up?

The major stumbling-block is still that there is no way we can prevent rejection. Actually, as I said, we can tone down the immune reaction but we cannot prevent it. From the time the organ is transplanted, it's being destroyed. Slowly if you are very well in control but eventually if you leave it, it will be totally destroyed.

We have had this permanently functioning, 'immortal' artificial heart - remember Dr. Robert Jarvik's invention? It sustained the life of the first patient, Barnie Clark, for 112 days in 1982-83, in fact considerably longer than your first. But what happened and why did the artificial heart flop?

But how did he last? He was tied to the machine all the time, a machine bigger than that television set, with a tube! When he wanted to go out for a drive, it was a major thing. They had to hire a van and a technician to go with him. I wouldn't do that kind of surgery. Because I still believe that you must give the patient an acceptable quality of life from the operation that you do and I don't think this was an acceptable quality of life. The length of survival is totally unimportant. It's the quality of survival that's important.

Does the artificial heart have no real prospects in the conceivable future?

You know that artificial devices are used as temporary devices now. But as a permanent device, it's a total failure. At the moment, it has no place.

You've spoken about the long waiting period. In the United States, for example, 47,000 Americans were recently reported to be on the organ transplant waiting list. Many of them just die. You have spoken yourself about the inadequate supply of organs. What explains that?

Well, there are several reasons for this. The first reason is that at the moment we can only use organs from human beings; we cannot use organs from animals. The second thing is that the human must die in hospital. If you are knocked down by a car and you die on the street there, we cannot use your organs. Because of the fact that there are blood clots inside the organs, there is an ischemic damage to the organs. And the third reason is that we need people to cooperate with us. We need the relatives of the donors to cooperate.

And further, you see, a donor usually is not admitted to the ward of the transplant surgeon! He or she is admitted to the ward of neurosurgeons or neurologists and often those people say, "I'm not going to worry very much about, caring for this patient. I'm not going to stay up that night to keep the patient in pretty good condition until the brain dies. Why should I do it? I get nothing out of it - the cardiac surgeon is getting all the praise!"

Until 1994, brain death was not recognised in Indian law; all vital signs had to cease. We have an Act of Parliament now - the Transplantation of Human Organs Act, 1994 - which is a Central Act that has to be adopted by States. Several States have adopted it and indeed cadaver transplants of several organs have been performed, including the heart.

This legislation was a response to commercial trafficking, the buying and selling of kidneys in particular, which was quite a racket. Chennai used to be, perhaps still is, the world's leading centre for the purchase of kidneys from unrelated live donors. I won't go into the details, but what is your thinking about this? Because some doctors say, "It's not the ideal situation but people will die unless you allow this" and so on.

Let me start by saying that in South Africa you cannot do it. It is illegal to sell any organ. We don't even buy blood from people. They are voluntary donors. But I once heard a surgeon from this country talk about it. He said, "Here is a man, he is poor, he wants to send his child to be educated properly. What is wrong in him making that sacrifice and selling his kidney?" You cannot, of course, sell your heart the way you sell your kidney!

The going price, what the donor gets, is about $1,000.

That's not very much, is it? But your children are hungry and all that and I was quite sympathetic to his way of thinking and his way of arguing about it. As I said, we will never do it in South Africa but I share the sympathy for the man who is poor, whose family is hungry, and he can do very well with one kidney.

Many of us have campaigned against this. It's uncivilised and it's such a racket. Even the medical profession, some of it, seems to be in collusion.

Yeah.

You go through a broker who pockets a large part of the cash.

That of course is unacceptable. I didn't know that happened. I thought that if you want to have some money, you go to the doctor and say, "Doctor, I'm prepared to sell my kidney to you."

Now, here as in South Africa, it is illegal, punishable by imprisonment that can go up to seven years and a fairly large fine. Yet there are loopholes in the law and the racket goes on. There is an Authorisation Committee that judges this and it provides you sanction, a licence to be an exception under the law. In some States, however, the Authorisation Committee, even though it knows what happens, pretends that the donor gives the kidney without any consideration and the donor, who is coached, can even claim to be a "near relative", something the doctors say they can't monitor. The racket, in fact, flourishes notwithstanding the law that illegalises it.

You see, I have never had that problem since you couldn't give your heart! I was never involved in that sort of problem. But I think, as you correctly stated, this is something that should be discouraged and maybe not allowed at all - because of the fact it can be misused.

I know that in certain countries, they use the organs of executed prisoners as well. They told me that Hong Kong was getting quite a lot of kidneys from (mainland) China; they execute condemned prisoners and take the kidneys out. I once explored that possibility when we were still hanging people in South Africa. I spoke to the Prime Minister about that but we decided not to do it. Once I arrived in Singapore and I saw that at the airport it says, "Drug trafficking is punishable by death."

Now they stamp it on your passport when you get a Malaysian visa.

Really (laughs)? And I got into the taxi - by the way, I think that's correct; I think drug trafficking is not killing one person, it's killing a lot of people. I was driving in a taxi and talked to the taxi driver, a young man. I said to him, "I saw this notice in the airport. Do they actually hang people?" "Oh," he says, "every day. They need the organs" (laughs). I wrote a book called The Donor, a science fiction novel and there I also discuss...

After your retirement?

Yes, I wrote two books after my retirement. I wrote a second autobiography called The Second Life and then wrote this science fiction novel, The Donor. There I start off with a surgeon exploring the possibility of using the organs of somebody who is executed. I don't believe there's anything wrong with it if you ask the person to give consent and they do that in America, you know. Because often these people are young, healthy people. I would think if I'm going to he hanged and they want to use my organs, it would be at least one noble thing I could do for the good of society.

Some countries have a law where, if you are killed in an accident, unless you have stipulated "No" your organs can be harvested.

I think it's a very good law.In Singapore, I believe.

I think they have it in more countries than Singapore. The law is called 'assumed consent' and I would encourage any country to introduce that law.

As for alternative, temporary or interim, solutions: what do you think of xenografts, animal organ transplants enhanced through genetic engineering?

I believe that that is going to be the future of transplantation surgery. I'm a great believer in this. I think the most important medical discovery of this century was the discovery of the molecular structure of DNA by Watson and Crick in Cambridge, and they got the Nobel Prize for it. I do believe that a lot of the medical problems that are today not solved will be solved through genetic engineering. I believe that the problem of the shortage of donors will also be solved through genetic engineering.

If I was a young medical student, I would have no hesitation in taking that direction. You will be not cutting out the heart, you will be cutting a gene out of the DNA chain and replacing the gene with a normal gene. They can manufacture genes today. I really believe that's a very exciting field. The Donor deals a lot with genetic engineering and the possibility of genetic engineering.

And partial artificial hearts, Left Ventricular Assist Devices or LVADs?

Well, they are being used. But any artificial heart has the problems of an artificial heart - and that's clotting inside the heart, the destruction of blood elements, and infection. The other thing is this, that if you only assist the left part, in many instances the right part starts to fibrillate. The right part also stops working. So you are now only helping the left half, the right half is not pumping. Those have got lots and lots of problems.

I recently read about the new thinking of a very distinguished surgeon, Dr. Thomas Starzl.

Starzl, yeah. He is a great pioneer in liver transplants.

In fact, he did the first successful liver transplant the same year you did your first heart transplant.

Yes.

Now this report (accessed through Internet) says that after three decades of splendid achievement and as he nears retirement, Dr. Starzl has reached the conclusion that he and his colleagues, for all these years, have been going about it the wrong way. To quote him: "We've made some discoveries that would suggest that there was an epistemologic collapse 30 years ago in the understanding of why transplants work. This was a classic example of how you can get caught up in a snowstorm of details - learning more and more about less and less - and let the great truth escape."

The great truth, according to him, is this: "The mystery was not about (the body's) rejection." It is about the intermingling of cells, the achievement of "a peaceful truce" between the patient and the donated organ. And referring to some basic research going back to the Nobel Prize-winning work of Peter Medawar, he is proposing that "rather than beating the patient's immune system into submission with drugs until it accepts the donor organ... the trick is to convince both the body's defence mechanism and the new organ that the intruder is really 'self'," that it's not really an intruder. And Dr. Starzl is calling for a "paradigm shift" and some new scientific discoveries. This may, of course, be futuristic. Do you have any thoughts on this?

This is the way things are going today. You can understand that your treatment of rejection is not specifically for that organ. It suppresses the whole immune system. That's not very good, you see. Because the immune system is necessary. But if, as you say, you can trick the immune system to accept that part of foreignness, then of course the rest of the immune system is capable of reacting to infection.

Today when you look at the results of the transplant programme, you will see that mortality is due first to rejection and secondly to infection. Those are the major causes of death after transplant surgery.

Dr. Barnard, you have a vision of larger issues: medical-ethical, medical-social and even philosophical. You have advocated the view that medicine is tending to prolong life, torture it into lasting months and years longer than might have been possible earlier, yet with scant regard for the quality of life. You have been quoted as saying: "The goal of medicine should not be to prolong life but to improve its quality." You have told the Indian press of a moving story of a critically ill old man brought into a Cape Town hospital (who was not allowed to die with dignity and was eventually found dead in his hospital bed, having disconnected the respirator himself). Was that a turning point in your thinking?

No, this was something that gradually happened. When I realised that, as a young doctor, I was so ambitious that I lost sight of my limitations. I would struggle day and night to show my colleagues that my patients would not die, irrespective of the suffering that he or she was enduring and the quality of life that he or she had.

Gradually, I began to learn more and more that we as doctors are not God. We are just human beings and we can help the patient up to a certain stage. When we reach the stage where we cannot improve the quality of life of a patient any more and we've used everything that's at our disposal to help the patient, then our duty is to let the patient die a peaceful and good death.

I wrote a book called Good Life, Good Death where I say that the doctor's duty is not only to give the patient a good life; it's the doctor's responsibility also to give the patient a good death. And that actually happened, the story about that man who disconnected his respirator, then wrote a note to the doctor that "The real enemy is not death, the real enemy is inhumanity." That actually happened, that's a real story.

It's almost a parable about the contemporary encounter between the advanced medical profession and common humanity.

Yes, that's right.

As to the circumstances in which you would prolong life and would not, you need guidelines.

Yes. You see, every patient is unique. You can't make a general rule. But one of the rules you must follow is that you must be quite satisfied that you and your colleagues and people who have surrounded the team have done everything possible for that patient to give him or her an acceptable life. And the patient will show you that life is not acceptable any more. Like this old man. He was still on a respirator, his heart was still beating, and he was still breathing and he was fed intravenously. But to him, that was not life any more.

When people say, "You're playing God," I say, "No, I'm not playing God. Because that's not God's interpretation of life. That is a life created by man. That's not God's life, but the type of life that man has created."

But can you always let the patients decide? Are they competent to decide?

Sometimes the patients are unconscious and cannot decide. But you have the relatives: you can discuss it with them. It's not a decision that you as a doctor alone makes. It's not a difficult decision. It's an obvious decision that comes. As you look at the patient, you can tell, even a relative.

You have gone considerably beyond this, in fact. You are a campaigner for euthanasia in certain circumstances. Would your (missionary) father have approved?

You see, that wouldn't have mattered to me. When I wrote this book, Good Life, Good Death, I mentioned in that book that it is still strange to me that the Bible does not speak against capital punishment, it condones capital punishment. So they give the judge the right to say that somebody must die and the hangman the right to terminate his life. The Bible does not write against war, where we specifically train people, specifically buy equipment for one reason only - that's to kill people.

Then somebody said to me, "But the Bible does not condone euthanasia." I said, "Of course, it does not. Because in the days the Bible was written, that was not an issue." People died from natural causes very quickly. But I'm sure if the Bible was written now, it would write about the right of euthanasia.

You became gradually convinced of it?

It was not a special point. It was not "There I start thinking differently." It was a gradual evolution of my thoughts and, I think, also gradual evidence of my maturity as a doctor.

You know, of course, that in the United States there is a whole movement, with many philosophers supporting it, for "Assisted Suicide" - and yet the laws come constantly against this. Very few countries have recognised the legality of euthanasia. Not South Africa yet?

No, it's not legal at all in South Africa. You see, there's nothing that stops the doctor in any country from stopping treatment. You cannot force a doctor to continue treatment on a patient where he feels there's no value (in the treatment). You cannot force a doctor to institute new treatment. The doctor has the right, if the patient is in severe pain, to give the pain-killing drug in doses that will shorten the life.

The only thing that, in most countries, the doctor cannot do is go there with a needle and a syringe full of some drug and inject it so that the patient dies at that particular moment. Now, "Assisted Suicide" is jumping the responsibility. They say, "Look, I'm not going to kill you but I'll show how to kill yourself!" I think that's shifting responsibility from the medical profession on to the patient or the patient's relatives, which I think is unfair.

Can you tell me something about your interest in cricket?

Well, I grew up in a little town. Afrikaners are not great cricketers. I grew up in an Afrikans town, we didn't play cricket, we played only one game, and that was rugby. But I'm a man that likes competition and I'm always excited when my own country competes. In fact, I get so excited that I have to turn the television set off. Now and then, I just have a look at the score because I get too excited about the game as it goes on. But I'm also interested in other sports. I like rugby very much, tennis too. I'm not very keen on soccer, because that's not a game that's very South African.

There are different ways in the medical profession. Some people are dedicated professionally; they are at great public institutions, teaching hospitals and so forth. Others make money through their ears.

I'm sorry that I didn't make money!Really? Why was that?

Well, because I was in a university and in an academic atmosphere. We didn't get paid very well. I can tell you that my top salary was just $1000 a month. My pension now is $800 a month.

No operating fees? Not even for the first heart transplant?

Nothing. Whether we operated on one patient or 500 patients, you got the same salary. But what kept me there was the fact that we had excellent research facilities. That was the compensation for the low salary. I was always much keener on the research than on the surgery. I wasn't a keen surgeon. There are some surgeons who cannot live without operating. I could live quite easily without operating. But I was very keen on exploring new ideas. And I was very fortunate to get involved in heart surgery when it was starting. There were so many different things we could work out in the laboratory.

So you really were an inventor-surgeon?

Yes, that was what I enjoyed. And then when I did the transplant and I was offered positions all over the world, I thought to accept would be wrong because I considered myself a tree that was bearing fruit. And if you transplant a tree that's bearing fruit, it takes some time before it starts growing again and producing fruit. I thought I didn't have much time left to start growing again. So I stayed in Cape Town.

Can you tell us something about your recent career as a fiction writer and the responses to it? When did this literary interest take shape?

I've written 15 books. I have written four fictions already. One is on euthanasia; it's called In the Night Season. It deals with a woman who developed breast cancer and the different approaches of the two doctors. The one realised, "I've done everything I can. I must now make life for the patient tolerable." The other one continues to treat and continues to treat.

The reason why I started writing is that I used to tell stories to people. And one day I was telling this story to an editor of a magazine and he said, "Why don't you just write it down and give it to somebody to put it in good English?" So all my novels except the last one (The Donor, 1996) were written with another writer. I must say that, to my surprise, none of them has become a best-seller! I thought they would do quite well, but they didn't do that well. And The Donor, which I think is a very interesting book, has not taken off that well. The last autobiography I wrote (The Second Life, 1993) was too honest. People said I was very much taken with writing about all my love affairs and things like that. I shouldn't have been that honest. But I'm a very honest man and I thought, "If that's the life that I've had, then why not write about it?"

What do you think is your finest achievement as a man of medical science?

What I would like to be remembered for is not for doing the first heart transplant in the world. I would like to be remembered for the children I have treated for a variety of abnormal heart diseases. That gives me the greatest satisfaction. Reconstruction of a congenitally abnormal heart, building that into a normal one through surgery - that's real cardiac surgery for me.

There was a little girl whom I went to see the day before her operation. I asked her, "My darling, what is wrong with you?" She said, "I have got a broken heart." When we mended her heart, that gave me the utmost satisfaction.