 Our final speaker this morning will be Christy Kirschner. Dr. Kirschner is a physician in physical medicine and rehabilitation at the Mount Sinai Hospital and Schwab Rehabilitation Hospital. Her research interests include disability ethics, disabled women's healthcare, neurologic rehabilitation, and neuromuscular disorders. And many of you in the audience know that Christy was one of the earliest people to enter the field of disability ethics and rehabilitation ethics. Today, this morning Christy will talk to us on the topic from Quinlan to Ashley X, a retrospective on disability healthcare and the role of clinical medical ethics, Christy Kirschner. Well, it's wonderful to be here and to reflect that I'm on my 20th anniversary. So it's quite amazing to think about what the last 20 years of my work in ethics has been and how enriched it's been by the McLean Center. So thank you, Mark, and thank you, McLean family. So I want to just put a couple of premises out there. And I'd like to start with the fact that when I think about the seminal cases that have helped define clinical medical ethics since the 60s, 70s, 80s, I think many, if not most of them, have at their core an issue or question of disability. My second premise is we've not had a touchy-feely relationship with people with disabilities. Disability activists, disability scholars have not felt that the world of clinical medical ethics has understood disability or been their allies. And we've seen this in a variety of ways. And with these classic cases, a subterranean culture and counter-narratives about why the clinical medical ethics, legal bioethics world got it wrong. And I think this is exemplified by a quote from Mouth magazine which is one of the disability activist journals that really compares bioethicists to skinheads. So, like I say, not a real touchy-feely relationship. But a lot of this work really came out of the disability civil rights movement. A lot of people who were at the core of the disability civil rights movement were people with polio who felt that they had to fight for acknowledgment in educational systems and healthcare institutions for personal assistance and services. Paul Longmore is on the right, to your right, of this slide. And Paul was doing a lot of this early work. A professor at San Francisco State University had polio himself. He was one of the founders of disability studies. And he wrote this paper that I think is really a classic paper and still has stood the test of time about, you know, when you look at medicine and you look at people with disabilities, we have a clash of cultures. And we have a clash of cultures for many reasons. People with disabilities look at their lives very differently than non-disabled people in healthcare professionals. And part of it comes down to how we see the goals of medicine. So if you think about is medicine, you know, to cure people or normalize their bodies? Or is it to help them function in the bodies that they have to alleviate suffering? We began to see discussions about medical model versus social model underlying a lot of the tensions. And out of this work, not just in bioethics, but in terms of disability and human rights work, we began to see an academic discipline emerge called disability studies. And this is an interdisciplinary field. It has intellectual roots in the social sciences, humanities and rehab. And one of the things I would point out is a lot of this work is not work that healthcare professionals are familiar with. It's not in the medical literature. But they talk about, think about very deeply, what is disability? One of the starting premises is it is part of the human condition. Most people in their lifetime will experience disability. So it's not something that is unusual and out there, but it is part of the human experience. Bodies become old, frail, and disability occurs as we age. So the social model, medical model critique really laid out the issue that the medical model says disability is always negative. Our role in medicine is to try to fix, cure, prevent and normalize a person. Whereas the social model would say, well, not always. Disability can be neutral. Disability is oftentimes an interaction between the person and the environment. So a person may be disabled because the building doesn't have stairs. If they have a wheelchair accessible building, they're no longer disabled. So they really look at those interactional components, which when I think back to medical school mark and thinking about the biopsychosocial model and how revolutionary that was, a lot of what I think the disability studies world has been thinking about is really, is medicine truly about biopsychosocial? And now in my world, we talk about biopsychoecological to layer in the environment. World Health Organization and the International Classification of Function and Disease has really embraced this. So in disability studies, the stakeholder perspectives are critical. Who gets to decide what the issue is? Who gets to frame the question? What are those power differentials? Again, feminist bioethics, narrative ethics has done some of this too. But disability studies does acknowledge issues of stigma and marginalization. So if I had to capture sort of the major beefs, I think disability activists and disability scholars have had with bioethics, they feel devalued by the way disability is talked about. They feel like there's ignorance about disability and there's a lack of respect for the lives of people with disability. There are negative attitudes and we've got an abundant amount of data that says healthcare professionals and people without disabilities are not accurate in their perceptions of what life with disability is like. They consistently have a negative perception of quality of life that is not in sync with what people would say about their own lives. And we've got still lots of issues of lack of access, care, resources, discrimination in terms of helping to level the playing field so people with disabilities can participate. So we've had counter narratives. So we've reached a point, I think, in medical ethics where we would say, well, we've really kind of tackled a lot of the major issues. We've talked about autonomy and the importance of autonomy in healthcare. It's the preeminent guiding principle of Western bioethics. Competent patients have the right to refuse medical treatment including life-sustaining treatment. And we're still talking a lot about the importance of an advanced directive of what issues that would solve in medicine. So are these settled? Well, I think let's look at a couple of examples of what counter narratives have worked. Let's go back to the 80s with some of the seminal right to die cases. Elizabeth Bouvier, the woman with cerebral palsy who wanted to starve herself to death was admitted to a hospital in Riverside, California. Doctors put a feeding tube in. And Elizabeth, for three years, cycled in and out of the courts saying, I do not want that feeding tube. I do not want that feeding tube. I do not want that feeding tube. And the court said, competent patient, right to refuse medical treatment. And it became one of the seminal cases. But the disability activist were in the background saying, now, wait a minute. We're looking at her as being depressed and wanting to die because of her cerebral palsy. In fact, if you look at the Mike Wallace videotape interviewing Elizabeth Bouvier and interviewing people who testified in her case, the neurologist says, none of us can imagine what it's like to scratch, not to be able to scratch an itch, which was never part of why Elizabeth Bouvier wanted to refuse food and fluid. So the disability activists were saying, something funny is going on here. She's been disabled her entire life. That is all she's known. And she was not somebody who gave up, but she was feisty. She lived in the community. She got married. She was working on a social work degree. What changed? Elizabeth all of a sudden decided that she wanted to starve herself to death. And they had all sorts of stressors that they could identify. Her marriage had broken up. She had a miscarriage. Her brother died. She had lost her housing. She had dropped out of school. So they were talking about, these are stressors that could cause despair for anyone disabled or not. Why are we treating her differently? Another seminal case was David Rivlin in 1989. David Rivlin had a spinal cord injury. He had lived in the community. He had been going to the university studying to be a philosopher. He'd had a girlfriend. He'd been engaged to be married. Then he developed some new neurologic symptoms which should not happen with the spinal cord injury, which is a static injury. They evaluated it, found he had an aneurysm of the spinal cord. So he underwent surgery to try to attempt to repair that aneurysm did not go well. He ended up then later dependent. What changed for David Rivlin was he ended up in a nursing home for three years because in Michigan the Medicaid system only allowed him to get care in the nursing home with the ventilator. So David Rivlin after three years said I don't want to live. I want to be taken off the ventilator and allowed to die. And this was actually one of the early cases that Jack Kovorki got really interested in and helped to stimulate his work. Medical model, bioethics would say competent patient, right to refuse medical treatment. And indeed if you look at the tapes of David Rivlin and you hear the doctors who evaluated him they would say, yeah, he was depressed but it was really a rational response to a situation. The counter narrative was, you know, this is really not an act of autonomy. He does not have choices. This is assisted suicide. This is a forced choice. This is coercion. He has no alternative but to continue life in a nursing home versus choosing to be withdrawn from medical treatment because he spent three years trying to fight for a way to return to his own home in the community and he continued to fight barriers. So the sense of the people in the disability community was he did not have self-determination because he didn't have reasonable options. He didn't even have a wheelchair to get out of bed. He didn't have any capacity to get out of the nursing home and reintegrate into the community. So I'm asking the question now, what progress have we made in bioethics in resolving this cultural divide? How are we doing now? Well, I'm going to just point out, I think we've actually made some significant progress and I'm going to talk specifically here about some of the areas which I think have really helped to inform the right to refuse treatment, medical treatment in the context of disability. I think Eric Cassel's work is brilliant on suffering. The suffering is a fear of disintegration of the self. It oftentimes is not what people are experiencing in the moment. It's what they're experiencing in their minds in the future. Peter Ubel, are you here? I think if you have not read Peter Ubel's work on the moral imagination and how people imagine states in the future and how they anticipate quality of life and hedonic psychology, I think it's fascinating work. It's helped to explain this disability paradox why people with disabilities judge their lives to have much higher quality of life than non-disabled people and healthcare professionals could imagine. And I think the work of Jodie Halpern has also been brilliant. I think that she's helped us understand the role of empathy and the engagement with the patient in negotiating these situations. I wanted to break up a case that dropped into our laps two weeks ago and I don't know if you've all heard about this gentleman Tim Bowers but about two weeks ago he fell out of a tree. 32-year-old newly married baby on the way fractures his spine. He ends up in a hospital and the doctors indicate well we're not sure you're ever going to get off the vent and the next day the family says that it's likeness sedation we want him to understand his prognosis and let him make his own decision. And a sister who was a nurse said her brother wanted to talk but couldn't because of the ventilator tube still in place. The tube were removed, doctors were not sure how long you would live so she's telling this to him now. Did he want the tube reinserted? If he struggled to breathe and the patient shook his head no and the doctors ask him the same questions and he shook his head no and they removed the tube and he did live actually five more hours and died in the presence of his family and friends. So what's interesting is this case flooded the news. Now why? It's on CNN, it's in the Associated Press multiple blogs are talking about it and indeed in one day I don't know how many of you are on the MCW bioethics listserv but there were about 41 posts in one day. So is this such settled business? I think it's interesting why was it of interest? Why was it newsworthy? Some people felt like absolutely shouldn't be talked about anymore. One is settled and others are saying gosh the rapidity of this decision. So we could talk about this again as a tale of two or more stories simply a competent patient making his own decisions or saying well how could he possibly understand his circumstances and make a decision? And I think you know I'm not going to spend time going through this but to think about how does an intubated patient have a considered conversation when they're being brought out of sedation and they've had the immediacy of such a traumatic event understand this. And so one of the answers in terms of the disability community's perspective on this was from the United Spinal Association president a man who had spinal cord injury who said I think this was uninformed consent. He said in 1993 if I were in this gentleman's shoes I would completely understand why he felt the way he did and why he chose what he did but he also talks about what it's like to be in that state you're at your lowest moment you're at your point of greatest vulnerability and he talks about then how you're worrying about being a burden to your family and you know the despair and the suffering and how glad he was that time was taken and he was able to work his way through it and I think if you went back to the work of Jody Halpern she would help us understand what's going on here that in the face of substantial suffering the person's ability to have mental freedom to imagine possibilities, goals for the future let alone to challenge the preconceptions of what this condition may be is actually quite constrained and that is that therapeutic engagement a process that we engage with patients that allow them to make decisions for points of authentic self-determination and Ellen, thank you I used the same slide of the iceberg but I think what I would like to put forward is my third premises I would love to see those of us who work in medicine, bioethics have actually a whole lot more curiosity about what this life with disability is about it's much richer, more complicated deep with more potentiality than I think most of us could ever imagine and I'm still at that tip of the iceberg stage after working with the 25 years so that's what I'd like to posit thank you