Seminar Series: John Lantos - Whose Autonomy? Whose Empowerment?

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standing, visiting Passover. This is the Sheila Huxler Green Memorial Lecture. Some of you who are with us every time know that we do this twice a year. This is as a result of a wonderful gift from Ellie Trowbridge, who was a member of the board of the Berman Institute of Dialectics and also, as it happens, of the Bloomberg School of Public Health. very, very devoted to Hopkins and an extraordinarily wonderful person. Ellie's daughter, I'm sorry, Ellie's daughter Sheila tragically died of breast cancer in her 20s. And Ellie had been thinking for a long time about that experience as most people would in a tragedy of that sort, but especially about the ethical dimensions of the end of her, not only her daughter's life, but her first husband's life. And so she determined to create this lectureship in honor of Ellie to give our community an opportunity to hear from distinguished scholars, both here at Hopkins and around the world, their reflections on ethical challenges at or near or around end of life or having to do with serious illness. So that's why we are fortunate enough today, because of Ellie Trowbridge's of her daughter, Sheila, to be able to invite John Lantos to be the Sheila Osler Reeves Visiting Professor for us this

Berman Institute memorial-lecture introducer

winter spring. So let me just say a word or two about Dr. Lantos and then do it really briefly because I want us to have as much time as possible to hear from him. We are truly honored to have Dr. Lantos here. Dr. John Lantos, he is one of the most distinguished physicians and distinguished scholars in our field of bioethics. By background, Dr. Lantos is a pediatrician. For many, many years, he was the associate director of the McLean Center for Clinical Ethics at the University of Chicago, where he also co-directed the Robert Wood Johnson Clinical Scholars Program there. He left Chicago several years ago to go to the Center for Practical Bioethics in Kansas City and most recently has moved on from there to become the director of a new pediatric bioethics program at the University of Missouri, Kansas City. Dr. Lentos is not only a distinguished scholar in bioethics, he's also a very distinguished pediatrician. He has been a leader for us in the field. He's been the president of the American Society of Bioethics and Humanities, as well as the American Society of law, medicine, and ethics. He's also been very, very generous with his time with regard to the general public. He appears in really impressive and appropriate ways in media outlets and has otherwise done a great deal in the service of advancing the public

Dr. John Lantos

I think are going to be the beginning of a book about where we've come from in making decisions about end-of-life care and where we're going with these personal experiences as sort of grist the mill. That is, how does it work for people for whom it should work the best? That is, people who are doctors and bioethicists taking care of family members and therefore should be unusually sophisticated in figuring out how to make the current system work. And I'll try to finish by one-ish so that we can have a little time for discussion, but that means I may talk a little fast.

Dr. John Lantos

So my father died in the early morning of the Sabbath between Rosh Hashanah and Yom Kippur in 2007. As he lay dying, I was at synagogue listening to the traditional reading of the New Year, the famously disturbing story in which God... tests Abraham. Following God's command, Abraham takes Isaac to Mount Moriah, binds him on the altar, and raises the ritual slaughter ignite to slit his son's throat. This story has surely driven more people away from monotheism than any other ever written, and it fit my mood because I, too, was feeling torn between conflicting obligations. I knew that Dad was dying. He'd got pneumonia, and we had decided not to treat him with antibiotics. He had stopped eating, and we had decided not to start intravenous feedings. He seemed to be comatose, but we had asked them to give him some morphine anyway. The hospice doctor had raised his eyebrows at this request, but said nothing. It didn't really matter. He would surely die in a matter of days. I did not doubt that we'd made the right decision, but it still all felt vaguely uncomfortable vaguely shameful, vaguely sinful. The biblical story of Abraham and Isaac is written in an eerie, almost dreamlike language full of linguistic tropes and rhythmic repetitions. When God first calls Abraham, Abraham responds, here I am. And later when Isaac calls out to Abraham and says, Father, Abraham again responds, here I am. He gives the same response when the angel calls out to him as he raises the knife to slaughter his son. Abraham is there for God, for his son Isaac, and for the angel, even as the three make impossibly irreconcilable demands. The story is one of divided loyalties, tensions between our deepest values, our strongest obligations, and our most passionate love. In my decisions about my dad, I felt like I was being tested. Was letting him die a manifestation of my loyalty to him, or was I abdicating my filial duty? I didn't want him to die. I didn't think that he would want to live in the condition that he was in, but was that my decision to make? I didn't know, and I still don't know whether I got the right answer. Clinical bioethics answers such questions using complex decision-making algorithms or risk management strategies or four-box models or techniques for conflict resolution. And the answers that bioethics provides are somewhat abstract, legalistic, procedural, and irrational, thin facades of philosophic palliation trying to ease the primal pain. All the ethical theory in the world could not help me get over the feeling that I had decided to kill my father.

Dr. John Lantos

The children's hospital where I worked, we were recently consulted about a two-year-old with Menke's disease. Menke's is one of those rare, terrible, degenerative diseases of childhood that causes gradual, inexorable neurologic deterioration. Most babies die before their first birthday. Most parents accept the hopelessness of the disease and choose palliative care. In this case, however, the mother insisted that the doctors and nurses continue to provide all potentially life-prolonging treatments, including long stays in the pediatric intensive care unit for mechanical ventilation, trice daily painful intramuscular injections of copper, a treatment that had been shown not to do any good, but that a doctor in the community was prescribing the treatments were keeping the baby alive, that it seemed to be a life of pain and suffering. The nurses felt like they were simply torturing the baby, and they were shocked that the mother, who was at the bedside every day, didn't also realize how continued treatment was causing ongoing and intractable suffering for this poor baby. They thought an ethics consultant might help. The mother was deeply religious. Her decisions for her son were, she felt, the decisions that God demanded of her. She embodied a strange Abrahamic contradiction. Her choices were agonizing to her, but she had no doubt whatsoever that they were correct. And the passivity of her certainty was what was driving everyone crazy. Her son suffered as he gasped. Her breath convulsed in seizures, gagged as he was suctioned, and moaned after each injection. And she watched and she prayed.

Dr. John Lantos

This year during the high holidays, my reflections about dad on the fourth anniversary of his death mingled with thoughts of my mother-in-law, Mary, who at the age of 85 had just been admitted to the hospital with pneumonia. Mary had had a few health problems over the years. Eleven years ago, she was successfully treated for breast cancer. Five years ago, she developed atrial fibrillation. She had a pacemaker put in. She'd been losing her vision to macular degeneration and of late had been getting a bit forgetful. But she's so smart that she's able to hide the forgetfulness well and nimbly participate in conversations that seem to make sense until suddenly you realize that they've lost whatever organizing thread they started out with. Sometimes, as happened with my dad, it seemed like she was not so much losing her mind as she was becoming oddly poetic.

Dr. John Lantos

had a kind of blank verse enigma about them, which made me wonder if they were non-sensual profundity. In spite of all her problems, she was, before the recent hospitalization, surprisingly active. She'd been going to aerobics classes in her retirement community, was able to get to her great-grandchildren's birthday parties, still able to do some work in the garden, and it would have been hard to assign a number between 1 and 10 to her quality of life. She and her husband Sam have been married for 64 years. He's a retired physician, 86 years old, and in pretty good health himself since his aortic valve replacement and quadruple bypass three years ago. Before the operation, he had been getting slower, weaker, and more short of breath, couldn't keep up with his regular doubles matches. His internist sent him to a pulmonologist to try a few antibiotics, and those didn't help. And eventually he found his way to a cardiologist who diagnosed the valvular and coronary artery problem. The operation was a success, but his post-operative course was rough. He was frustrated and depressed at his slow recovery. He stopped eating. He didn't want to get out of bed. And I didn't think he was going to make it. And frankly, I wasn't.

Dr. John Lantos

started him on some antidepressants and a very pretty physical therapist started making home visits. For her, he would get out of bed and do his exercises. She coaxed and cajoled him and rekindled his will to live. He's now back on the tennis court playing doubles three times a week. Serotonin and testosterone are a powerful combination. A few weeks ago then, Mary started coughing and became short of breath. She tried resting at home for a few days, but the symptoms worsened. She was admitted to the hospital to picnic in a little hypoxic. The chest X-ray showed diffuse infiltrates. They started antibiotics. She got worse. The next day, she was moved to the ICU. They began IPAP.

Dr. John Lantos

She got agitated and confused and kept trying to tear the cumbersome IPAP device off her face. They stopped her. They sedated her and restrained her arms. Her breathing got worse. A follow-up chest X-ray showed widespread pulmonary infiltrates throughout her lungs. Her liver was enlarged. Her kidneys shut down. And family members around the country flew home to offer support and say goodbye. The family asked the doctors if there was any hope of recovery. The doctors hemmed and hawed. These sort of symptoms, they said, rarely get out of the hospital alive, but each of her problems, taken in isolation, seemed treatable. Sam was not ready to give up. No limitations were placed on her treatment, in spite of the fact that Mary had said for years and years that she would never want to be put on a ventilator. No DNR order was written. Nothing was withheld or forewarned.

Dr. John Lantos

A marriage situation, hovering on the brink and needing a decision, reminded me of one I'd faced with my father a few years before he died, when one night my mother found him unconscious on the bathroom floor at 2 in the morning in a pool of blood and vomit. She called 911. The paramedics took him to the hospital. She called me a few hours later once he was stable and sedated in the ICU. I got on a plane and had no idea whether he'd still be alive when I arrived in Washington, D.C. I wasn't sure what I was hoping for. I met Mom in the waiting room of the ICU. She looked both frightened and helpless, wondering, unsure, whether she'd leave the hospital a widow. She was a small woman, but she looked even tinier than usual. The prior few years had been brutal for her. She cared for Dad as he lost him. one capacity after another. She slowly, painfully, and sometimes bitterly gave up on one dream after another. Like many patients with Parkinson's disease, Dad had been dying for a long time. But the 20 years or so in which he'd struggled with the inevitable, the man he had once been seemed to disappear into the disease. The transformation was initially so slow and subtle, but we were able to ignore it. Only people who saw him intermittently were able to see just how dramatically disease had taken its toll. Before he had been vibrant, jaunty, athletic, even a bit of a rogue. He always had a twinkle in his eye. After his face became the mask-like face of Parkinson's disease, his body a weighty and ungainly load. After his death, we looked through old pictures and realized that his disease had clearly begun and was readily visible a full ten years before we acknowledged it. He probably did. He was an internist and an expert diagnostician, but he never talked about it. During the months before he collapsed and was admitted to the ICU, he had spent his days sitting on a porch, wrapped in a blanket, staring at nothing. To me, he seemed painfully diminished as a human being, but maybe not. Maybe he had achieved the sort of inner peace, simplicity, and tranquility that the rest of us long for but cannot find. He no longer felt restlessness or curiosity or desire.

Dr. John Lantos

Mom and I sat together for a few minutes outside the ICU. She told me again what had happened the night before, how she'd found him filthy and disoriented on the bathroom floor, and the urgency of her morning telephone call was now gone as the events became a story, an ordered narrative, rather than the chaotic battlefield dispatches of the night before. I listened. I held her hand. I praised her presence of mind. You saved his life, I told her. It's lucky. were there. I suggested that she take a break and go get a cup of coffee. We were at the VA hospital in Washington. The ICU was overcrowded in a 1980s sort of way. It wasn't one of the temples to technology that one sees in private hospitals, where the ICUs look like the bridge at the Starship Enterprise. In Washington, it was just a bunch of old vets crowded together in a semi-open ward, hooked to their monitors and IVs. At first, I couldn't find Dad. Everybody in the ICU looks different than they usually look. They look like prisoners, pale, haunted, and frail with a mixture of terror, confusion, and guilt in their eyes. The stress of the illness, the overlay of the opioids, the bizarre light and the noise and the hot-ball gowns all combined to make everybody look a little generic. I scanned the faces, scanned them again, and then finally picked them out from the crowd of sallow-skinned, white-haired, hollowed-eyed veterans. Dad, I called as I approached his bed. His eyes found mine. He tried to raise his hands, tried to smile, but couldn't do either. He had a tube down his nose that was caked brown. He had IVs and monitor leads on both arms. I patted his hand, kissed him on the forehead, and said with a smile, man, you look like

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shit.

Dr. John Lantos

His grimace seemed like an attempt at a smile. and a tear rolled down his cheek. What the hell are they doing to you? We've got to get you back home. He waved vaguely at the other beds in the ICU, rolled his eyes, shrugged, and whispered,

Audience commenter on advance-care conversations and cultural models

Hey, I believe it. It seems to have stopped.

Dr. John Lantos

And then, stating the obvious,

Audience commenter on advance-care conversations and cultural models

Short of breath.

Dr. John Lantos

A nurse appeared, a tall man with close-cropped hair and a gold stud in one ear, wearing scrubs. Hi, I said. I'm Dr. Lantos' son. How's he doing? Well, he had a tough night. He seems better now. He's on some oxygen. We've given him some blood. Then he turned to Dad. How are you

Audience commenter on advance-care conversations and cultural models

feeling, Ray? Does anything hurt?

Dr. John Lantos

No. I'm okay. Thank you. His heart rate jumped to 140 and his O2 sats dipped down into below 90. It's just mumbling a sentence was wearing him out. He could end up on ventilator. I had to find his doctor. The nurses directed me to the chief of neurology. I found the chief in his windowless office surrounded by diplomas and pictures of his kids. He had that distinguished, patrician, gray-haired look that middle-aged doctors get if they don't become alcoholics.

Dr. John Lantos

I wanted him to be wise. After some pleasantries, he started explaining Dad's situation. GI bleed, possible aspirations, and respiratory distress. His tone of voice suggested this was pretty routine, that he hoped that our conversation would be quick and simple. Dad's pretty stable. Not get out of the woods, of course. Needs to stay in the ICU overnight. Overall, things look good.

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I said that I

Dr. John Lantos

wanted to talk about a DNR order. He looked surprised. He quickly reassured me as if I hadn't heard the first time that dad was going to pull through and that he could look forward to a high quality of life. I tried to be clearer. I said that mom and I had talked and we felt that in his current condition dad would not want to be intubated or put on a ventilator. The doctor then tried to be clearer too and explained to me in that tone of voice one might use with a dull and somewhat recalcitrant student that it wasn't yet time to start withholding life support and that for now what we really needed to do was get Dad through this acute illness. His message and his tone infuriated me. I felt a surprising surge of adrenaline. My heart was pounding. I had not anticipated that this would be a conversation in which I would need to control my anger. But for just a moment, I wanted to reach across his big wooden desk, grab him by the throat, and shout in his face, what the hell do you know about my dad and his quality of life? What the hell do you know about who he is or what he needs? What makes you think for even a second that your opinions matter?

Dr. John Lantos

But I took a deep breath. I am, after all, a bioethicist.

Dr. John Lantos

I know how such conversations must go. There would be a discussion between strangers about procedural principles. It would not be philosophical or soul-searching. We would not plumb the psychological depths of what it might mean for a son to lose his father or the complexities of that loss when it followed the son's deliberate and conscious decision to allow medical technology to be withheld or withdrawn. No, and nor would it be a theological discussion. We would not mention God or sin or salvation. We would not talk about commitments or duties or obligations. He was the neurologist, a technical expert in EEGs and MRIs and neurotransmitters and pharmacology. And to him, I was the son from out of town He didn't know if Dad and I were close or distant, whether we'd talked frequently or hadn't spoken in years. He'd seen all kinds, from the guilt-ridden sons who'd abandoned their parents and now came back to demand all sorts of fuel treatments, trying to redeem themselves, to the others who came back to try to bump off Mom or Dad in order to get their hands on the inheritance. Nothing would surprise him. I pointed out that Dad had a living will. Yes, the neurologist said, looking both thoughtful and a little pained. But I don't think your dad currently has a terminal condition. He just has a little respiratory distress, probably a mild aspiration. So living will is not really relevant in this situation.

Dr. John Lantos

I grudgingly admired his deft move and had to admit that his concerns were valid ones. Did dad fill out a living will because he wanted treatment to be limited only when he was clearly dying or because in his current state of health he had wanted to refuse all life-sustaining interventions? The document itself, I was pretty sure, would not help. It was probably some standard boilerplate language that they'd gotten from their estate planning attorney. They kept it in their safe deposit box. And when mom had told me about it, she lowered her voice to whisper as if it was a sharp, painful secret. Okay, paternalism one, autonomy zero. I tried a different tack. I said, just that morning when I was in the ICU, dad and I had discussed the ventilator and he had told me that he didn't want to be put on a ventilator. This was sort of true.

Dr. John Lantos

It had truthiness. Sitting by dad's bedside earlier, I knew I should at least try to talk to him about what was going on. I had to find out what he understood and what he was thinking. I was scared to begin the conversation. It's not easy to ask your dad if he's ready to die. And he and I had never really talked about his disease or about much else. He was not an introspective or self-revealing man. He preferred the comforts of a martini to the consolation of conversation. When he first developed symptoms of Parkinson's disease, he did not acknowledge it, although he must have known his symptoms were classic. But he didn't want to talk about it. Now, he needed to talk. If his breathing got worse, they would put him on a ventilator. If they didn't, he would die. I asked him how he was feeling. He shrugged. I asked him if he was getting all the pain medication he needed. He nodded.

Dr. John Lantos

I asked him what his doctors had told him about what was going on. Not much, he whispered. He worked up my courage and asked the big question. Dad, what if your breathing gets worse and they want to put you on a ventilator? Should I let them? Without a pause and with just a trace of bitterness, he said, why? in the form of a question, but it felt like a statement of dismissal. And then, oddly, he switched to the third person and said, enigmatically, why would we want to intubate an old guy like him?

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It

Dr. John Lantos

took me a minute to make the transition. He made the shift from thinking of this as a decision he was making for himself to thinking of it as a decision that he might make as a doctor. For a patient in his condition, the first person in the sentence became, and it became an ambiguously plural we. And dad himself became a third person, an old guy in a hospital bed who we ought not incubate. I often replay that conversation in my head and each time it seems more remarkable to authorize his own death yet transform himself into an object of the decision rather than the subject. The neurologist, interestingly, did not ask me about the details of the conversation. Instead, he simply dismissed it. Dad's dementia had progressed to the point, he said, where he really didn't have the capacity to make decisions anymore. Furthermore, the stress of his acute illness was probably compromising his decision-making capacity even further. wondering if this guy was chair of his hospital ethics committee.

Dr. John Lantos

Once again, I had to admit, I sort of agreed with him. The only reason why Dan's opinions actually carried any weight with me was because I agreed with them and thought it was the right decision. If I had actually thought that he would recover, I wouldn't have paid any attention to his request in that condition, not to be intubated. I, too, with a big mortgage. Paternalism, too, autonomy, nothing. Still, I wasn't ready to give up. I made what I thought would be my decisive final move. Dad, I said, has a durable power of attorney for health care. Naming my mother as his proxy decision maker. She told me that she wants a DNR order. So do I. So I thought smugly I had him cornered now. Dad was confident that he had expressed his own wishes. He was incompetent that she got to make the decisions. I had a living will, a current statement, and a duly appointed proxy. Give me a break. He nodded sagely, reassured me that all he wanted to do was what was best for my dad, and said that since mom was his durable power of attorney, he would need to talk to her himself to be certain that she understood the current situation, the treatment options, and the prognosis. As his proxy, she needed to be fully informed. Specifically, he said he wanted to be sure that she understood that if dad needed to be intubated, it would just be a day or two and he fully expected that he would recover fully. I knew mom would cave. She'd gone along with me, she would go along with him, and she would not insist on a DNR or a DNI because she generally deferred to doctors because she herself was emotionally distraught and conflicted and because So by the neurologist explaining things, it didn't really make sense or seem to make sense to withhold something that at that point for that illness seemed so simple and so effective. Not really a victory for paternalism then, instead a victory for the conspiracy of love.

Dr. John Lantos

Conversations between family members and doctors about life-sustaining treatment often go like this. The rules seem clear enough at the outset, but the longer the conversation goes on, the less important or relevant those rules seem. I conceded defeat. Now, the neurologist and I would not have had this conversation 30 or 40 years ago. Then he would have made the decision and informed us of the plan. I would have acquiesced. I might have been grateful or bitter, but in either case, I would have been voiceless and powerless. Now he had to negotiate with me, with my mother, with us, had to exercise his power in more subtle and constrained ways. I or we, the family, had more power than we would have had decades ago, but both our power and his were carefully constrained by the new social, legal, and philosophic consensus about what we could do, when we could do it, what we could not do and why. This current approach, this prevailing consensus, this powerfully autonomy-oriented approach to end-of-life decisions is profoundly idealistic about the capacities of individuals to plan their own deaths and to do so in ways consistent with their own values. It is also deeply cynical about the value or the trustworthiness of relationships, family, community. It assumed that dad needed to be protected, not just from his doctors and the ICU, but also from me and my brothers and sister and from his wife, from our fears and our potentially selfish goals. The paradoxical outcome of this process for dad and in the same way for my mother-in-law, Mary, was that in the end, nobody really respected their autonomy or empowered them to live and die according to their own deeply held values. Instead, we paid lip service to autonomy, but then neutered it with a series of castrating procedural obstructions

Dr. John Lantos

It's taken 40 years for us to figure out how this new system works and doesn't work. And over the course of this 40-year social experiment, we've learned some interesting things about ourselves and had to revise our thinking, or should, about who we are and what we want. Back in the 70s, many lawyers, policymakers, and bioethicists believed that they understood what the problem was with end-of-life care. It was that patients and families generally did not want as much high tech life prolonging treatment as their technology crazed doctors were providing. By this view, the problem was that doctors could not accept death and that doctors had all the power in clinical decisions. The solution then was to somehow empower patients and families to resist doctors and to refuse unwanted life-sustaining treatment. The result was just the sort of conversation I was having with the neurologist in which I was invoking all these new frameworks for decision-making that had been developed over the intervening years. The surprise, though, has been that most families are not like me and do not want to refuse life-sustaining treatment for their loved ones. They are more like Sam as he was in relation They want even more life-sustaining treatment than the patient would have wanted or than the doctors and nurses think is appropriate. Instead of needing to be protected from physician-driven overtreatment, many patients and families find themselves in the situation of the mother of the child with diabetes disease, opting for more treatment rather than less. And the very same laws that empowered families to refuse empower them to demand. The result has been the current situation in ICU and end-of-life care, a kind of crazy quilt of autonomy and paternalism, of focus on the patient and focus on the family, and of an absurd array of options for life-prolonging treatment and subtle and insidious ways of limiting access to these for some people. in some situations. We draw the line at one end of the spectrum with the contentious debate about whether or not patients and families can demand treatment that doctors think is absolutely futile. We draw the line at the other end of the spectrum with the prohibition of active euthanasia. But in between those liminal taboos, our way of death is to authorize and subsidize individuals and families to write whatever endings they can negotiate with their doctors, the stories of their own lives, and the lives of loved ones, as long as they are persuasive and have the courage of their convictions.

Dr. John Lantos

Another surprise, as we've watched this new consensus play itself out in practice, has been that the loosening of rules governing decisions about end of life care has not led to a slide down a steep, slippery slope for the devaluation of life, as some predicted. Many predicted that the loosening rules about access to ICU care and permitting people to withhold or withdraw life-sustaining treatment or even to get physicians to assist them in their suicides, we would see a slide for the devaluation of the lives of the old, the disabled, the marginalized, the disempowered. And surprisingly, these slopes don't seem to be as slippery as they once seemed. If anything, the rules have worked the other way, empowering the old, disabled, the marginalized to assert themselves and shake their own treatment. Even assisted suicide, where it has been legalized, that is in some states in the US, or active euthanasia, which has been legalized in some countries in Europe, hasn't been used very widely. Instead, these options too have become a fairly stable feature of this menu of available choices for end-of-life decisions chosen by a fairly small subset of people for what seem, for the most part, to be the sorts of conditions for which their use was generally considered most ethically defensible. We don't see, as Kurt Vonnegut predicted, suicide parlors alongside hospitals. sports arenas and brothels.

Dr. John Lantos

Finally, most people who choose palliative care today do not choose it instead of aggressive life-sustaining treatment or life-prolonging care. Instead, like good Americans, they choose it in addition to life-prolonging care. So even though today a third of American deaths take place in hospice, Americans get more ICU care than ever. Then they get more hospice care, too. Palliative care is a supplement, not an alternative. As a result, the rise in palliative care doesn't save money in the way that proponents once imagined that it would. It contributes to, rather than controls, rising health care costs. Our current approach to these end-of-life decisions is widely perceived to be unsustainable. pundits, policy makers, and bioethicists across the political and philosophical spectrum agree. We can't go on this way. But of course, nobody agrees on the solution. And the stalemate just leads to one unsavory and invective driven compromise after another. So where will it all lead? What will end of life care look like 25 years from now? As Yogi Berra said, predictions are really hard, especially about the future. But stories like my dad's and Sam's and Mary's and of the little child with Mankey's disease may shed some light on where things are going and what they're likely to look like, although it's not clear to me that these could be called, in any sense of the word, solutions.

Dr. John Lantos

No DNR or DNI order was written for my father that night. After a conversation with the neurologist, my mom said that she just wasn't ready.

Dr. John Lantos

As it turned out, it didn't matter. He made it through the night without needing intubation. His respiratory distress gradually improved. He was transferred out of the ICU the next day, and all our discussions had been a sort of practice run. Eventually, mom could no longer take care of him at home. He moved to the Hebrew home of Montgomery County, there for about $10,000 a month, a fee that did not cover telephone service, cable, television, laundry, or barber shop fees. He was cared for by excellent Filipino and West African nurses for the next four years. This dementia person, by the end, he didn't recognize anyone in the family, didn't know where he was. and it was no longer worth the trouble of trying to help him get to the bathroom. Instead, he lay in bed with a diaper and a condom catheter. He was still able to eat by mouth, but slowly lost weight. And every six months or so, he would get a fever. And each time, Mom had to decide whether to authorize a chest x-ray and antibiotics. And each decision was a struggle. And after each such episode, Mom would read and then second-guess herself and swore that it would be the last time. What's the point, she asked, whenever he was well. And when he got sick, she changed her mind. I suggested that we enroll dad in hospice. And she didn't want to do that either. In her mind, obviously, he wasn't dying. He was just dwindling. And when he wasn't acutely ill, he didn't seem to be dying

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and

Dr. John Lantos

wasn't suffering. He would always greet me with a clueless cheerfulness. Our conversations were lovely and completely ephemeral. Anything we said would just disappear. He remembered nothing.

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Every once in a while, he would say something witty or poetic, something that could have been a really clever haiku. I

Dr. John Lantos

wrote some of them down. Once he said, looking out the window, the children on the playground fly to their parents like you used to do. For another time, he said, my father came last night. He cried, so I gave him my soup. One day, he developed a high fever, cold sweats, and a fibrous. The nurses asked what we wanted to do, and we finally agreed not to give him antibiotics. He called family members and told them he was dying. The hospice folks came Friday afternoon, and dad died early Saturday morning. He was in hospice for less than 24 hours, but he'll show up in the statistics as someone who died under the care of hospice.

Dr. John Lantos

Meanwhile, Mary seemed to be getting better. After two days at death's door, two days of anuria, two days of relatives sitting quietly at the bedside talking to her unresponsive and sedated body, not knowing if she heard anything that was said, she decided not to die after all. Her kidneys opened up. She started breathing better. She was able to recognize family members and carry on brief conversations. And for a few days, nobody was really ready to believe that she was going to make it. But when she was off BiPAP, transferred to the floor, and was not only responsive to everyone in conversations, but actually got back to being her old, irascible self, demanding to be discharged and complaining about the food, we began to believe that she might actually survive. I was shocked, but had long ago learned humility about prognostication.

Dr. John Lantos

So what do we learn from these stories? The decisions that we agonize about are not always the ones that are the most important. We agonized about whether to put Dad on a ventilator, but he ended up not needing one. Mary, too, got out of the ICU without a vent. Families and doctors seemed to stumble in the darkness of prognostic uncertainty. We try to do the best we can with the technological and moral tools that we have. And collectively, we are sometimes able to find an acceptable, if not a perfect, balance between individual rights and communal norms, between what's best for the patient and what's best for the family.

Dr. John Lantos

Some rabbis think that Abraham did not pass God's test. They argue that God really wanted him to protest when he asked Abraham to take his son up to Mount Moriah. Protest the way Abraham did in a prior episode in the Bible when God was going to destroy Sodom and Gomorrah. As evidence that God was not happy with Abraham, they cite the fact that after the events on Mount Moriah, God never speaks to Abraham again. Abraham never speaks to Isaac again. And the next we hear of Sarah is of her death. It's hard to know whether we are passing our tests. The little child with Menke's disease went home on BiPAP and is still home and alive today. Mary's recovery lasted two days. Then she became septic, returned to the ICU, and died. The family told themselves We didn't give up. We did everything we could. And luckily, that is not quite right. We almost never, thank God, do everything we did. Instead, we try to find this new and elusive balance, doing everything that makes sense within the complex framework of each particular illness, and reminding ourselves that sometimes, even for a loved one, death is not the worst outcome.

Dr. John Lantos

You know there are no answers and it's tough to decide, but it's interesting. I mean, I guess what I would hope these stories illustrate is how sort of the answers that we've come up with, which I think were good answers to a set of problems that we were all facing 30 years ago. That is, I think this discussion about how to do death and dying shifted radically and dramatically here and throughout the world with the invention of mechanical ventilation. and then with other treatments that could sustain life in conditions that had before that been inexorably and inevitably fatal. So that sort of the prevailing, mostly religious, but also ethical and legal assumption about how we should do end of life care is hope for, pray for, try for keeping people alive as long as we possibly can, knowing that luckily we're gonna fail within a relatively short time when people are really sick. And all of a sudden, with the invention of this new technology, that wasn't true anymore. We got what we hoped for and prayed for. People didn't die, and we were left with a whole different set of problems. So the first response to this, and the one that has shaped our approach to decision-making, I think, for the last 30 years is, well, it's a problem for individuals. So we're going to empower individuals because nobody has a right to make a judgment about anybody else's life, the social worth of anybody else, anybody else's values. So whatever people say they want is, right? So the measure of outcome would be how true are you to people's own stated values? Well, then it turned out most people weren't very good at stating their own values or even deeper, even having values because it turns out the problem of thinking about and planning your own death is more than sort of a procedural problem that you work out by filling out a form with your estate attorney, estate planning attorney. It's sort of the deepest, most profound existential problem imaginable. That is, how do you really want to die? I heard Joanne Lin do the talk. You've probably heard this talk, too. She goes like, Okay, how many people want to die of metastatic cancer? Raise your hand. How many people want to die of a sudden heart attack?

Dr. John Lantos

Okay, so the rest of you want to die like my dad did, old and demented in a nursing home wearing a diaper and a cotton cap, whatever, because those are your options. Pick one. And most people look as blank as you do. That is...

Dr. John Lantos

It's a trick question, right? No, it's not. So how are you gonna do this and what measure of outcomes are you gonna use if not individualism? I think it's sort of shifting to a, as some of your work has shown, to a sort of complex family wellbeing measure of outcome. That is, we're willing to compromise on autonomy for a sort of not societal utilitarian, but family utilitarian measure where sort of everybody feels good and is left with a story that they can live with. So in Mary's case, everybody could say, we didn't give up, which seemed like a good thing, even though giving up was what she would have said she wanted.

Dr. John Lantos

And I think that's sort of where we're heading.

Dr. John Lantos

Yeah? So how do we do better on the other side of this? The other

Music / non-speech

side?

Dr. John Lantos

among pediatricians and people who work in children's hospitals. I mean, those of you who are not pediatricians or don't know much about the culture of medicine, pediatricians are the nicest people. They're the best doctors. Internists, oh my God. Cynical. Pediatricians, warm, fuzzy. We really care. Right? We're really good, I think, at figuring out what families want. And our problem is, I think, when, as in the Menkes case, when the family wants something that seems like it's really bad for the child, we beat ourselves up and say, it's our job to solve this. Because we, this can't be, we want to respect parents, we want to listen to them, but we Our primary focus is the child. We have to protect the child. And parents are doing, the same thing happens at the other end of the button. That is, you know, when Mary's case wasn't an extreme example, but family members can do the same thing to their elderly loved ones, insisting on too much treatment. I don't know how much the problem is solvable in that sense. That is, I think we beat ourselves up when every case does not turn out perfectly.

Dr. John Lantos

examining ourselves when they don't turn out to be a good idea, trying to figure out whether something could be done better. And it turned out in the Menke's case, we ended up saying, we're not going to put this kid on a ventilator. And we sort of fudged a rationale that he had so much osteopenia because of the copper metabolism, the bones had become fragile, and the ENT doc said, you know, if you bend his neck to intubate him, you could cause a C-spine fracture. And that was... possible, but not incontrovertible. But we went to mom and said, well, we're going to do everything but that. And she got mad, talked to the priest. We talked to the priest. Everybody met. And we sort of composed it. And then it turned out he didn't need to be intubated and went home on a bypass. And so was that a good outcome? I mean, some people are troubled that he continues to be tortured by invasive and painful therapies that they believe are futile. But I think it's as good as we can do. Yeah?

Audience commenter on advance-care conversations and cultural models

That's a great story.

Audience commenter on advance-care conversations and cultural models

by the fact that you, particularly you, never talked to your dad and been sick for a long time about that. And I think that it's an amazing thing that we do. I mean, if not you, then who? Right? I mean, we get so stuck. And it feels to me like in all of these situations, if we could open that door early and learn, I mean, you can't do it, then who? But if you could do it, how? So what can we do?

Audience commenter on advance-care conversations and cultural models

great

Dr. John Lantos

idea. He's a great guy. I did

Audience commenter on advance-care conversations and cultural models

talk to my mom about her death a long time, for years. And it was probably some of the most wonderful conversations I've ever had. And it worked. It helped

Audience commenter on advance-care conversations and cultural models

There's two parts

Dr. John Lantos

to the question. One, there are ways to do it, and people who think that that is really the solution, there are a lot of programs, too. The Center for Practical Bioethics has long, caring conversations. They do workshops in churches. to bring up the issue that people in Wisconsin, what are their names? Five Wishes. Five Wishes is in Florida. That's the other school in Wisconsin. Which is also five somethings. But there are frameworks for having these conversations that are supposed to, and do, in evidence-based studies, if you use these, you can actually have better conversation. So there are ways to do that. The second half, though, is whether, The conversation matters, that is, whether knowing what Dad said

Dr. John Lantos

really is what should have driven his treatment

Audience commenter on advance-care conversations and cultural models

of Ed. I agree. I think that is an important problem. But I think the conversation helps with that conclusion that the family will feel like we had the right story. Whatever. I think having that conversation from the beginning helps people to create the story that they need at the end.

Dr. John Lantos

Yeah.

Dr. John Lantos

I think that's certainly true for some people. whether it's many people or some people. I mean, in some ways, it's a question of whether the sort of autonomy model and the question of whether people are capable of this, meeting this challenge of thinking about and, if not planning, at least expressing opinions about their own death and how they want to die is a challenge that most people are ready to meet in the data, or want to meet in the data. Most people know that the criminals are out there and don't fill them out. And most people know that they can make an advanced directive durable power attorney for out there and don't. I mean, my favorite sort of public domain story about this is the story about Michael DeBakey. And it was in the New York Times three or four years ago. So we better remember that Michael DeBakey, the most famous surgeon in America, invented the operation for dissecting an aneurysm. himself at the age of 95, developed the classic symptoms of dissecting aortic aneurysm and called his colleagues and they said, you gotta come into the hospital. And he said, no, I'm just gonna rest and I think it's gonna get better. And they said, are you saying you want the hospital? And then he said, no,

Dr. John Lantos

if I need an operation, I'll think about it then. And for the next month, lay at home with his life-threatening dissect of the disease he had. I don't know what to conclude from that, except some people just don't want to think about it. How

Audience commenter on advance-care conversations and cultural models

does it work better in other cultures?

Dr. John Lantos

No.

Dr. John Lantos

Well, better. Better gets back to the first We are the world leaders in autonomy promoted. I mean, most other cultures have long ago accepted autonomy as a crazy idea for these sorts of decisions. We've been doing it since the beginning of time with paternalism. Doctors know best. Doctors sit down with family members and tell them what needs to be done. And family members acknowledge doctors' expertise on this. And you lie to the patients. I mean, duh.

Dr. John Lantos

And so are they better? They don't have many of the sorts of problems that our model brings up. We have

Audience commenter on advance-care conversations and cultural models

our model in conjunction with an extremely litigious

Dr. John Lantos

society. Yeah, there's all the reasons. I mean, lots of good reasons why we are who we are. Given who we are. You know, to understand bioethics, American bioethics, you have to understand baseball. But try to find an article about a futility problem in a European ICU. They don't have a futility problem. Because the idea that a patient would demand the treatment that the doctors think is real doesn't matter. Apparently doesn't matter. It's pretty good for us.