Writing Our Last Chapter | John Lantos | TEDxIndianaUniversity

Dr. John Lantos

About two months ago, as I was working on this talk, I had a heart attack. It was a Sunday morning. I felt typical signs of substernal chest pain. I started sweating, rushed to the hospital. They diagnosed it with an electrocardiogram, and suddenly, the team swung into motion. I was lying there on the ER bed, thinking that I was about to die, and all around me Skilled professionals were doing jobs that they had trained for years to do. Started big lines in both arms. They shaved my chest. They shaved my groin. They rushed me to the cath lab. And this was what my cardiac catheterization looked like. The arrow points to a complete blockage of the left anterior descending artery, the one that doctors call the widow maker. They pushed the blockage out of the way, put in a couple of stents, and for the doctors who were doing this work, it was routine. It was all in a day's work. I went home two days later, and thanks to modern medicine, I'm here tonight to talk about it.

Dr. John Lantos

I love medicine. As Paul Simon wrote, medicine is magical. Magical as art. The boy in the bubble, the baby with the baboon heart. But like a great poet, these examples that he gave are thoroughly ambiguous. The boy in the bubble who had a congenital immune deficiency disease lived for 12 years encased in plastic like a sad guppy in a fishbowl. Whether this was a success of medicine or psychological torture, I think is hard to decide. The baby with the baboon heart

Dr. John Lantos

lived for three weeks in a neonatal intensive care unit that probably looked something like this. You can hardly see the baby there, surrounded as she was by so much medical technology. Was she better off getting this treatment, or would she have been better off if she'd been allowed to die a peaceful death? Modern medicine is a double-edged sword, and it raises the question, all of these raise the question, how do you want to die? How do you want to write the last chapter of your life? And what does the decision about how you want to die say about your values when you live? I'll give you multiple choices. There's really three possibilities. You can die in an ICU, getting CPR and all available medical technology. You can go to hospice and get floated away on a fentanyl drip. In many states, you can go to your doctor and ask for a prescription for a lethal medication, physician-assisted suicide. Which one do you like? Jimmy Carter chose first to get aggressive medical treatment, and then recently to go into hospice care. But each of these choices is almost an impossible one to make. We don't want to choose A, B, or C, because all three trap you in a fishbowl. And if you jump out of one, you just jump into another fishbowl. When I was lying there on the hospital gurney in the ER, I felt like I was in a fishbowl, looking out through glass at all these healthy people trying to save my life.

Dr. John Lantos

These choices about how we want to die are a relatively new thing in human history. What I'd like to do now is just take you through some of the developments that led to the possibility and, in fact, the necessity to make these choices. And they've come through advances in medicine, changes in the law, and meditations that I would call religious or spiritual. And finally, there's been a lot of work done in the arts, for example. And let me anchor this discussion with this poem from 1951 by Dylan Thomas. who exhorted his dying father not to go gentle into that good night, but to rage against the dying of the light. He could write this because in 1951, rage was about all you could do.

Dr. John Lantos

That changed the very next year. In 1952, there was a polio outbreak in Copenhagen. Hundreds of patients a week were coming into the ICU with respiratory failure. The only treatment was the iron lung. which was unwieldy, and there were only three of them in all of Copenhagen. But a young anesthesiologist got the idea to put a tube in people's throats and to use bags and masks or bags to ventilate them. And there were no mechanical ventilators, so the only way they could do this was to close the medical schools and the nursing schools and have students handbagging hundreds of patients for weeks. Now, many people with polio, the paralysis is temporary. and a lot of these patients survived. And that led to the invention of mechanical ventilation, the modern intensive care unit, modern medicine, and the dilemmas of modern bioethics. It didn't take long before somebody realized that these were spiritual dilemmas. What does it mean to be dead if you're on a ventilator? It used to be death was defined by your heart stopping or stopping breathing,

Dr. John Lantos

Somebody wrote a letter to the Pope and asked, what do I do if I'm breathing for someone and it seems like they're dead? The Pope, Pope Pius XII in 1957 cleverly ducked this question, saying the answer does not fall within the competence of the church. And these cases are the object of insoluble doubt. But he did say you only had an obligation to do care that he called ordinary, not extraordinary. About 11 years later, 16 years after the Copenhagen polio outbreak, a group of middle-aged white men at Harvard decided to take on the question of what it means to die when you're on a ventilator. And they invented the concept of brain death. They published a paper in the Journal of the American Medical Association. The reasons for this committee convening were not entirely patient-centered or not entirely about a definition of death. The committee convened just a month after the first successful human heart transplant, and one of the reasons they felt an urgency to come up with a definition of brain death was to allow the procurement of hearts from people before the people's hearts stopped beating and the hearts were damaged from lack of oxygen.

Dr. John Lantos

1969, a few years after Harvard, Elizabeth Kubler-Ross broke through another fishbowl glass by doing research talking to patients about how they felt about death and dying. But it wasn't until 1977 that a court would make it legal to stop a ventilator on a patient who wasn't brain dead. The case was a New Jersey case, Karen Quinlan, a 22-year-old who'd collapsed at a party and was left permanently unconscious and on a ventilator. Her parents wanted the ventilator stopped, and the hospital lawyer said, we're not sure that's legal. The New Jersey Supreme Court permitted it because they said patients have a right to refuse life-sustaining treatment, thus allowing these choices that we have to make.

Dr. John Lantos

That legal innovation became particularly important during the next decade as the country and the world faced the AIDS pandemic. People with AIDS were uniquely empowered and politically savvy. They protested, as shown here, in front of drug companies and in front of the FDA. But they were also aware of their right to request or refuse life-sustaining treatment. And Dr. Abigail Zuger, who was an AIDS doc at Bellevue, wrote a beautiful paper about the difficulty of the conversations that had become necessary because of these changes in the way we think about life-sustaining treatment. She described a patient she called Jerry Silver, who had every complication he could have from AIDS, and yet, he was not ready to die. She wrote, Jerry Silver wants to live. He was incurably ill and incurably optimistic. Whenever she talked to him about do not resuscitate orders, He said, I don't care about pain, I want everything. Suppose they develop a new treatment tomorrow. But eventually, she convinced him to agree to a do not resuscitate order. He lost hope and as she wrote, turned his face to the wall and died a week later. Jerry's case is particularly heartbreaking because as we now know, treatments, successful treatments for AIDS were just around the corner. And that raises the dilemma that we've faced ever since. It's been particularly acute during the COVID pandemic. How do you know whether a treatment is coming along? When will the next vaccine be available and effective? So today, we live in an era of transplants, gene therapy, artificial hearts, wonder drugs, but also an era where assisted suicide, hospice care, and in many increasing number of jurisdictions, euthanasia has become available. So this conversation between medicine and law and religion works like this, I think. Medicine offers hope of new treatments. Religion generally says life is sacred and it's sinful not to cling to life. And law empowers people to choose whether to have these treatments, forego the treatments, or even take a drug to kill themselves. And that situation leaves people incredibly lonely and isolated.

Dr. John Lantos

Much of the best work trying to figure out what's happening today comes in the arts. People have been writing novels, film scripts, plays, poems about this moment when you have to decide, do I go for the next treatment knowing that it might do more harm than good? Or do I accept the fact that I'm mortal and it's time to redirect my efforts to preparing for death? Aleksandar Hemon's a novelist who wrote about facing this with his daughter who had brain cancer. And he said, I had the strong physical sensation of being in an aquarium. I could see out, people could see in, but we were living and breathing in entirely different environments. Or Kenzaburō Ōe. who won the Nobel Prize in literature for this work about his son, who had a congenital brain anomaly. He talked about what it was like, what it felt like, what I'm experiencing, he wrote. It's like digging a vertical mine shaft in isolation. It goes straight down to a hopeless depth that never opens on anybody else's world.

Dr. John Lantos

But there's a paradox or an irony in this kind of writing, because even as they're writing about isolation, they are writing, and they're reaching out to tell the world, to tell other people to connect around these decisions, these new decisions and these new experiences. It's happening on TV shows, it's happening among our greatest poets, like David Bowie and Leonard Cohen, who both wrote poems as they were dying about the choices they faced. It's happened in lots of memoirs where everybody is trying to figure out what it means to face these decisions and how to break out of the fishbowl of isolation that they feel when they feel abandoned or harmed by medicine on the wrong side of religion and perhaps disconnected from some of their closest family members, and loved ones.

Dr. John Lantos

I think what we need as we face these decisions, these really new decisions, is a new kind of ritual, a new kind of thinking of this moment of decision as a life cycle event when people can gather together and say, I've reached the moment where I'm going to turn away from the hopes of medicine. I'm going to reject the vitalist philosophy of religion, but I'm going to do it in a way that I hope can be holy and sanctified, and it would be nice if people could gather around and join me and be with me to create a ritual, sort of like bereavement rituals, so people would know how to celebrate this decision in a new sort of way. I imagine that there might even be a meditation or prayer that would sound something like this, a meditation for the withdrawal of life support. Oh, force that brought me into being. My spirit is turning in a new direction. My love for life stays strong, yet I do not fear death. I don't know what will happen next, and I never have. So here I am, ready. for whatever comes next. That sort of ritual, I think, might help break us out of this fishbowl. Thank you very much.