What Death With Dignity Means to You and Your Loved Ones

A Life & Death Conversation with Dr. Bob Uslander

For decades Kathryn Tucker has been supporting people's rights to have a peaceful and dignified death. She's fought to protect the medical aid in dying laws. Listen to learn more about the End of Life Liberty Project. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact End of Life Liberty Project Dr. Bob: Katheryn Tucker is an attorney who's dedicated almost 30 years to supporting the right of individuals to have a peaceful and dignified death in a manner that's consistent with their values. In this work, and in this effort, she and I are very aligned. She helped initiate and protect the medical aid in dying laws in Oregon and Washington State as well as California, and has continued to be a fierce advocate for this right on a state and national level. Katheryn's a graduate of Georgetown University Law School, and she's currently serving as the executive director of the End Of Life Liberty Project, which is now based at the UCSF/UC Hastings Consortium on law, science and health policy. Katheryn is recognized as a national leader in spearheading creative and effective efforts to promote improved care for people who are seriously ill and dying. And on this episode, Katheryn is discussing her passion for supporting and protecting people's right to a peaceful and dignified death. As well as her views on the current laws in place in certain states that allow terminally ill people to access physician aid in dying or otherwise known as death with dignity. I personally found this conversation to be highly informative, a bit provocative and incredibly interesting. I hope you do too. Well. Katheryn, I am so happy to have this conversation with you. And I really appreciate you taking time. I know you're a busy lady, and involved in lots of important things. So, again, thanks for sharing your time and your expertise with my listeners. Kathryn Tucker: Well, thank you for having me. My pleasure. Dr. Bob: Yeah. I feel like we have so many different things that we could talk about that are important, but I'd like to start out, you're a passionate advocate for people having the most peaceful, dignified end of life as am I. We have we approach it from different angles, but with the same kind of general mission, which is to allow people to be self-determining and have more control. You've been doing this for a long time, how did you become such a passionate advocate for this? Kathryn Tucker: I started doing this work when I was a brand new lawyer back in 1990, and I was the outside counsel to the first initiative campaign in the country to put before voters the question of whether dying patients should be able to receive physician assistants in dying. So, my work started that year with that campaign. I did become passionate about empowering patients with information and choices as a civil liberty, and one of the most profoundly personal decisions a person can make in a lifetime. Dr. Bob: So, was this something that you ... Is this a direction that you chose at that time back in 1990, or did it just fall into your purview based on where you were working and what you were doing? Kathryn Tucker: I was a young lawyer in a big law firm in Seattle, Perkins Cooley that supported its lawyers taking on pro bono work. So, I actually was casting about for some public interest work and came upon the campaign, Washington Citizens For Death With Dignity, and just volunteered to provide some legal support. Right at that moment, the initiative was being drafted. So, I got involved with that drafting. Then we had a long campaign that involved the defense of the ballot title in court, that's the words that the voters will see when they go to make their vote and is very important to the outcome of the vote. So, we had litigation about that. We had litigation around false political advertising because some of the claims that were being made about what the law would allow were so outrageously wrong that we challenged those in court. So, it turned out to be a year and a half working to get this in front of the voters. And it very nearly passed even though it was quite a broad measure, much broader than what was passed in Oregon a few years later. So, my work on that then rolled forward into doing some work on the Oregon Effort in 1994. But also the orchestrating of two federal lawsuits that were seeking to have the federal courts and ultimately the United States Supreme Court recognize that the choice of a dying patient for a more peaceful death with physician assistants was an interest that should be protected by provisions of the United States Constitution. So, that work then got underway, and 25 years later I'm still doing this role. Dr. Bob: You're still doing that. Do you ever wonder what would have happened if you never were asked to participate in that back in 1990- Kathryn Tucker: It would probably have been a less interesting and satisfying career. I think that this question which is that the intersection of law, medicine, bioethics is very fascinating, and there are so many perspectives and so many complexities that 25 years later it says interesting as it was when I first got started. So, I'm very grateful and privileged to be able to do this work.Dr. Bob: I completely get that. This work has been part of my life only for the past couple of years since the end of Life Option Act passed in California, but it's so complex, and it makes me feel so, I guess, alive and invigorated to be able to provide such a high level of support at such an incredible and vulnerable and intense time in people's lives. Kathryn Tucker: Right, absolutely. Dr. Bob: So, I commend you, and you're partly responsible for what's transpired and what's now allowing people to have this kind of control and peace. And so I thank you for all the efforts that you've put in. I know that you've gone way above and beyond, you've created a nonprofit to additionally provide support. So, 25 years after you began, what are you currently focusing your energy and attention on right now? Kathryn Tucker: Well, one of the things that I constantly try to do is have some perspective on whether the efforts that we have been engaging to expand end of life liberty are actually achieving that. My current view is that while the work we did with the Oregon Death With Dignity [inaudible 00:07:50] which became the first statute to permitted and dying, enacted by voter initiative in 1994 by the Oregon voters. But then subsequently followed in many other states that have essentially what's referred to as the Oregon model. Which is a very heavy-handed government regulation of the practice of medicine with regard to aid and dying. That very heavy-handed government regulation may have been appropriate and necessary in 1994 when no state had an open practice of aid and dying. And there were many unanswered questions about how an open practice would impact patients and the practice of medicine. So, the Oregon enactment was designed first to actually be able to run the gauntlet of the political process. So, it needed to have a tremendous number of what are referred to as safeguards. You'll recall that the Oregon measure followed a failed attempt in Washington State in '91, and then a failed attempt in California in '92. So, by the time we were working in Oregon in '94, it was the kitchen sink approach to protection, regulation and safeguard so that the contentions of opponents that this would be dangerous could be effectively combated by showing how many safeguards, in fact, were in place. So, that's the backdrop of why the Oregon measure has the multitude of restrictions, requirements, and constraints that it does. Following Oregon's enactment. Other states adopted virtually the same but in some cases even more burdensome measures. Because at that point they could say well, the Oregon approach has worked well. So, everyone in this forum can feel comfortable voting for this. That's been effective. We saw Washington State and Vermont and Colorado and California and Hawaii adopt what are called Oregon style aid in dying measures. The problem is we're now more than 20 years later; we've got abundant data that shows who chooses aid in dying and why, and how it impacts patients in the practice of medicine. So, we now know a lot more than we knew in the early '90s. I think it's time to move away from the Oregon model because what we have also seen, and a multitude of studies are starting to report is that very heavy-handed government regulation comes at a tremendous cost. It creates barriers to patient access, which I know you've seen in your practice. And it creates tremendous burdens for physicians, which of course you're also aware of, which means few doctors are willing, and patients find difficulty finding doctors, and it's very problematic. So, the advocacy that I am embarking into now is really to move the practice of aid in dying into a standard of care approach, which is how all of medicine is practiced Dr. Bob: Awesome. You are really gifted at articulating all of that, and I think you did a great job of sharing how things got to be as they are today. Could you go a little deeper into what the heavy-handed government regulations you're referring to are? Kathryn Tucker: Sure, and I know you know them very well. Dr. Bob: Right? I want our audience to be aware of what we're talking about. Kathryn Tucker: Right. Well, so, on the eligibility side, and I don't really quibble with this because I think this is where our culture accepts the practice of aided dying. The patient must be diagnosed with six months or less life expectancy. They must be mentally competent. So, this is a decision that can only be made by a patient who has the ability to make their own informed medical decisions. Then the physician involvement is limited to providing the prescription for medication which the patient can self-administer. Those three bright lines, terminal illness, mental competency and patient self-administration, I think are what this culture accepts and are appropriate however the practice is conducted. Whether it's subject to statute, or standard of care. But then beyond that, what these regulatory statutes require is a tremendous amount of process and procedure. The patient must make multiple requests. It must be oral and written; they must be witnessed. They must have a minimum 15-day waiting period, although in the case of Hawaii that's now been extended to a minimum waiting period of 20 days. There's a tremendous amount of requirement for the collection and recording of data. And all of that is apparent to the practice of medicine. And most medical practices, even practices that result in the death of the patient and in fact, can be anticipated to precipitate the death of the patient are practice subject to standard of care. Which means the practice and procedures that govern are those that have been shown to be most efficacious and to deliver the best care to the patient. That is something that can evolve over time as clinicians discover what is most efficacious. So, it's an evolving standard, which best serves the patient. Here, just to bring it into a concrete example, I think we can all see that a 15-day mandatory state regulated waiting period causes a tremendous amount of suffering that standard of care would likely not impose. Clinicians free to determine whether there should be a waiting period would likely have it be much shorter. They might say to the patient, and Dr. Bob, you can say what you might say. You might turn to your patient and say, "Why don't you sleep on this, and we'll talk about it at our visit next Tuesday, or we'll talk about it tomorrow on the phone." It wouldn't be an additional 15 days. Because remember, patients come to this choice when the cumulative burden of suffering is so horrific that they feel that achieving death is their best option. So, they're in tremendous suffering when they're ready to make that choice, and then mandating waiting another 15 days, which many patients don't even live long enough is just cruel. Dr. Bob: Agreed. I completely agree. So, that does seem to be the most significant burdensome aspect. It's interesting, I hear about how often people have these multiple struggles trying to find a physician who will support them. Once they do find somebody, often it's because they're part of a hospital system, and they've been referred to so and so, or their own doctor has finally agreed to. But they also have these processes in place that mandatorily referral to an ethics counselor or a psychologist or psychiatrist even though they've never had any hint of mental illness throughout their entire life. But when people find me, and I know there are other physicians, Lonny Shavelson, and there are other physicians who are truly focused on providing support and honoring the patient and not primarily focused on protecting themselves and worrying about the liability or the hassle factor. The process really can be very streamlined. It doesn't feel in many cases for the patients that we care for, overly burdensome aside from the 15-day waiting period. So, I know we've had conversations about that- Kathryn Tucker: You are to be commended for your willingness to put up with so much procedure. Because doctors are busy people, and to create additional burdens on the clinician as these statutes do, well beyond what would be done for example, with the provision of palliative sedation, of course, is another medical choice that patients can make, and physicians can provide. Where death is the certain outcome after some considerable period of time, while the patient essentially dehydrates to death without any of that paperwork, without any of that reporting of data. It just happens within normal medical practice, which I think is where most physicians are comfortable practicing. That's a difficult enough job as it is without layering a tremendous additional level of process procedure and second-guessing on top. Dr. Bob: Yeah. I'm in agreement. What I've come to discover since becoming willing to participate and support patients and families is, I have concerns about this becoming a more ... About having a lot more physicians support participating. I want patients to have easier access, and not struggle to find the support that they need. But knowing how much time and energy goes into providing that support, the questions the patients have, the families have, the multiple, multiple phone calls and emails and communications as this is moving forward, I'm very concerned that most physicians in a traditional practice don't have the mechanism or don't have the wherewithal to provide that support. So, we would certainly have to be able to address that. Because otherwise, people are going to be struggling not having the information they need, not having the support they need. What are your thoughts about a process that can be put in place to ensure that that's happening? Kathryn Tucker: Well, I certainly think that clinicians who are willing to expand their practice to include aid in dying are going to be those that are highly motivated to respect their patients autonomy and to want to make sure that the patient is able to make the journey to death in the manner that is most consistent with their very personal preferences and values and beliefs. So, this is a fairly unusual subset of clinicians that will feel strongly about that. I think that they will take the responsibility of ensuring that the patient's request is voluntary and considered and enduring. I think they will take that all very seriously in a standard of care practice. Those clinicians will provide it. So, it will self-select. Certainly, not everyone is going to make this part of their practice. And we know that, for example, 20% of surveyed physicians in a New England Journal of Medicine survey were unwilling to discuss palliative sedation with their patients. That's an option that is clearly accepted by both law and medicine, and it should be available to patients in all 50 states. Yet, a fifth of doctors don't inform their patients about it. So, we know that physicians self-select what they're willing to provide in terms of care, and not all physicians would provide aid in dying. I'd like to see the model that we've been able to open the door to in Montana, considered by other states. And that's the one state that now has nearly a decade of aid in dying practice subject to standard of care, not subject to statute. I think that that model should be more closely looked at by other states and by advocates. Because it's much more normal in the practice of medicine than to have statutory governance. Dr. Bob: Yeah, it's an interesting model. Do you know how ... Of course, Montana is not a very populous state. Is there any data on the numbers of patients that are taking advantage of that right in Montana? Kathryn Tucker: Right. Well, you asked the question that we all ask, and the answer is no. Which is as it should be, because, absent a statute, clinicians are not required to collect and report data to a state agency, which then publishes the data for public review. So, we don't know the answer to that question. We do know anecdotally, from talking to clinicians who have embraced aid in dying in their medical practice, that some clinicians are practicing, and some have been very public about that, and have been willing to talk about their experience in other forums, including in lawsuits, trying to expand and have life, liberty and other states. So, we have the experience and the testimony of participating clinicians, but we don't have survey information. And in fact, I've been working with some researchers who do research into the practice of aid in dying in various states and published studies that you'd probably read about that practice. To encourage them to embark into the kind of surveying that would allow us to answer that question in Montana. It's really, they're excited to do it, it's a question of finding the funding to support their work, and we are also planning a symposium in the state of Montana to bring forward the experience there, and hopefully interested clinicians and patients and health policy researchers from around the country will come to that symposium to learn more about the Montana experience. Dr. Bob: Great. Do you know when that's going to be happening? Kathryn Tucker: We have just chosen the date. It will be September 6, 2019. Dr. Bob: Okay, so about a year plus in the planning. Sounds good. I'll put that on my calendar. Kathryn Tucker: Great. Dr. Bob: Another model that I find interesting, we were talking about the concern about physicians, if more physicians were participating in supporting aid in dying, do they have the wherewithal to truly support the patients? I did an interview with Robert John Keir in the Netherlands, and we talked about the model there, which of course allows euthanasia, in a much broader scope. But they allowed physicians to serve as an attending physician without any specialized training or background. But every patient is required to be seen by a specialist in this infield. There's a select number of physicians who are trained to be able to do the assessment and to provide the guidance and support. So, they provide support for not only the patient but for the physicians who have the relationship with the patient. So, what it does, is it assures that every patient has the adequate support that they would need, which would be an interesting model to be looking at here as well. Because one of the reasons that physicians, many physicians are reluctant is because they were concerned about the burden. They're concerned about the time involvement that they don't know enough to make sure that they're doing everything properly. So, what are your thoughts about that? Kathryn Tucker: Yeah, I don't favor having an extremely specialized small cadre of physicians who do this work. I much favor that the patient can turn to their own physician in the context of hopefully, a long-standing doctor, patient relationship, which can be very rich in terms of what the doctor knows about this individual, and their values, their beliefs, their preferences, and that that can inform the care the physician is able to provide the patient. Rather than having the patient come into contact at a difficult, vulnerable, burdened time of life to meet a new professional, and try to ramp that person up in explaining who they are, and why this is important to them. That's a complex dialogue that one would hope has gone over some period of time. And I think that's why it's so difficult Of course, to extrapolate cross-culturally. But I think it accounts for when you take a look at the data from the Netherlands where it is common that there are these long-standing doctor-patient relationships. And that that then allows the clinician to feel comfortable actually administering life-ending medication to the patient, which is not permitted in the States. But when you're in a situation with a very long-standing relationship, and there's a lot of clarity and understanding about the patient's wishes, the clinician then feels comfortable doing that, and the society feels comfortable supporting it. So, I tend to favor the physician assistants coming from a position with a long-standing relationship with the patient. Dr. Bob: I couldn't agree more. I absolutely believe that that is the ideal version and the ideal scenario. But realistically, I'm also aware of what life is like for physicians, and what that relationship has become. And unfortunately, it would be a long time, which I think many things would have to change for that to become reality. And I think we're both aware of that. That's the idealized version, which would be phenomenal, and it does happen at times. There are times when I have a physician who will contact me and say, my patient is requesting this, I want to support them, I don't really know what to do. It's my first time, and they request my support in guiding them to allow them to be the attending physician, and I may become the consulting physician, but providing additional guidance and support. Kathryn Tucker: That's exactly as it seems it should be, which is that's how standard of care and best practices are established, is clinicians who are new to a practice will look to peers for guidance. That's the beauty of standard of care governance is, hopefully, the more experienced clinician helps the beginner understand what best practices are. And those can, in a normal environment be allowed to evolve as the clinicians learn in providing care. So, I think that's the direction we should be moving, and much of my work now is oriented toward bringing that about. Dr. Bob: That's wonderful. I'm fully supportive of that aspect. I'd like to ... Again, we could speak for hours and just barely scratch the surface of all the things that we might want to talk about. And I am hopeful that you'll be willing to come back and do another podcast with me at some point in the future. But before we close, I just want to give you an opportunity to share whatever it is that's bubbling up for you, if there's something that you want to make sure that you articulate to the listeners, I'd like to give you that opportunity. Kathryn Tucker: Well, I will close by thanking you for offering me this opportunity to share some insight into the work of the End Of Life Liberty Project. And for any listeners who don't know the work with that project, you can find out more by visiting our website, which I hope you will do. We are based out of the UCSF/UC Hastings Consortium on law, science and health policy. But if you just Google End Of Life Liberty Project, you'll come to our website where there's information about our work. There's also a handy donate button. Because of course, this work is the work of a nonprofit and can only happen when donors support the work. So, if any of your listeners are in a position to support this work, we're always grateful and make tremendous mileage out of every dollar donated. You can also like us on Facebook, and get updates on the work of the project through following us on Facebook. Dr. Bob: Fantastic. And we'll make sure that the links for the sites and the Facebook page are on the website where we post all the podcasts. And that's at integratedmdcare.com/newsite1. Again, this was fascinating. I'm always fascinated and grateful to speak with you. I feel like we are in partnership in something incredibly meaningful. The patients and families that we get to care for are benefiting from your tireless efforts. And again, thank you for giving us some of your time and wisdom. Kathryn Tucker: Thanks for the opportunity Bob, and for all of your good work as well. So, congratulations to you.