Aid in Dying What It Means to Those Who are Terminally Ill, Ep. 19

A Life & Death Conversation with Dr. Bob Uslander

Please Note: This was recorded as a Facebook Live earlier this year prior to the recent ruling to overturn the California End of Life Options Act 2015 by Riverside County Superior Court Judge. In response, California Attorney General Xavier Becerra filed an emergency appeal seeking a stay of Superior Court Judge Daniel Ottolia’s ruling that invalidated the less than two-year-old medical aid-in-dying law. "It is important to note the ruling did not invalidate the law or the court would have said so explicitly in its order, so the law remains in effect until further notice," said John C. Kappos, a partner in the O'Melveny law firm representing Compassion & Choices. If this law and the right to die with dignity is important to you, we urge you to learn more from Compassion and Choices the organization that helped get the law passed. 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. Need more information? Contact Dr. Bob for a free consultation. Transcript Dr. Bob: On this episode, Elizabeth Semenova and I speak very frankly about what it's like to support people through Medical Aid and Dying. We explain the process; we discuss who asks for this kind of support and why there are still so many barriers. This was originally captured as a Facebook Live and repurposed as a podcast because this information is so vitally important. Please share the podcast with everyone and anyone you feel would benefit from listening. Thank you. Dr. Bob: I'm going to do a little bit of introduction for myself, if you're watching this and you have been on the integrated MD Care site, you probably know a bit about me. I've been a physician for 25/ 30 years, somewhere in that range. Over the past several years I've been focusing on providing care for people who are dealing with complex illnesses, the challenges of aging, the challenges of dying. During these few years, I've discovered a lot of gaps in the health care system that cause a lot of challenges for people. Dr. Bob: We developed a medical practice to try to address those big challenges in those big gaps that we've encountered. It's been really remarkable to be able to do medical care in a way that is truly sensitive to what people are really looking for and what their families are looking for that is not constrained and limited to what the medical system will allow. It's not constrained by what Medicare will pay, what insurance will pay. We allow people to access us completely and fully and we are there to support them in a very holistic way with medical physician care, nursing care, social working care and then a whole team of therapists. Massage therapists, music therapists, acupuncturists, nutritionists. Dr. Bob: So that has been really fascinating and phenomenal. Elizabeth came along in the last several months. Really, she was drawn primarily to the true end of life care that we deliver and has been truly surprised how beautifully we are able to care for people who aren't necessarily dying as well. Elizabeth: Absolutely, yeah. Dr. Bob: So we can talk about all the different aspects of that, but we are here today to really talk about Medical Aid and Dying. Because, shortly after we started this practice, back in January 2016 California became one of the few states in the United States that does allow physician-assisted death. Dr. Bob: It allows what is also known as Death with Dignity, Medical Aid in Dying. The California End of Life Option Act passed in June 2016. At that point, a person with a terminal illness, an adult who is competent, had the ability to request a prescription of medicine from their physician, from a physician. That if taken, would allow them to have a very peaceful, dignified death at a place and time of their choosing. Since June 2016 we have become essentially experts and kind of the go-to team in San Diego for sure and actually throughout a good portion of Southern California because other physicians are reluctant to participate or because the systems that the patients are in make it very difficult or impossible for them to take advantage of this law. There is a lot of confusion about it. It's a very complex, emotionally charged issue. We as a team, Elizabeth and I, along with other members of our team have taken it upon ourselves to become true experts and guides so that people can get taken care of in a way that is most meaningful and sensitive. In a way that allows them to be in control and determine the course of their life leading up to their death and how they are going to die. That's why we are here. We want to educate; we want to inform, we want people to not be afraid of the unknowns. We want to dispel the myths. I'm passionate about that. We work together, and I think we do a very good job as a team, of supporting patients and families. I'd like to have Elizabeth share a little about why this is so important to her and then we are going to get into some more of the specifics about what's actually taking place, the requirements, how the process works and if there are questions people have we are going to answer those as well. We are going to go for about 20/ 25 minutes, and if it turns out that we don't get through enough of our material then we will have another session, but we don't want to make this too long. We want to make it concise, meaningful and impactful. Elizabeth: Okay. Dr. Bob: All right. Elizabeth: Okay. I started as a hospice social worker, and I became an advocate for Aid and Dying because I learned about the law. Learned that there were not a lot of options, policies, procedures in place, in Southern California when I started working in hospice for people to take advantage of and participate in the End of Life Option Act. Elizabeth: There were very, very, very few resources. There were no phone numbers to call of people who would answer questions. There were no experts who, well not no experts, who thoroughly understood the law but it was very hard to access that information. Elizabeth: I did my best to find it and became connected with some groups and some individuals who were experienced with and understood the law and became really passionate about pursuing advocacy and allowing as many people to have access to that information as possible. I started working on sharing that information and being a resource and learning everything that I could so that other people could have that. How I became connected with Integrated MD care and with you, I found you as a resource for another client, and we started having conversations, and I learned that it was possible to be supportive of people through this process through the work you were doing and I took the opportunity to become a part of it. We have done a lot to support a lot of people, and it's become a really special part of our work and my life. Dr. Bob: Why is it so important to you? Why is it so important to you for people to have access and the information? Elizabeth: I really believe that every life can only be best lived if you know all of the options that you have available to you. So how can you make choices without information? Right? So when it comes to something like this which is a life and death situation, quite literally, there are limited resources for people to make informed choices. What could possibly be more important than having access to information about what your legal rights are to how you live and die? With California only having begun this process of Aid and Dying. Exploring different perspectives and legal options and philosophical positions on the subject, I think it's really important to open that conversation and to allow people who support it as well as people who are against it to have those conversations and to explore how they feel about it and why. Then of course for the people who want to participate, who want information, resources, support in the process they have every legal right to it, in my opinion, they have every moral right to it and if there are no other people who are willing to support them I feel it is my duty to do that. Dr. Bob: Awesome. And you do it well. Elizabeth: Thank you. Dr. Bob: Yeah it's kind of crazy to think we have this legal process in place. People have spoken up and said, we want to have access to this, and we believe it's the right thing. Despite the fact that we have a law in place that allows it, it was so difficult, and it's still is to some degree, but especially in the beginning, it was like a vast wasteland. If somebody wanted to find out how to access this process, no one could really give them adequate information. There were organizations that would tell them what the process is and how it happens but there was no one stepping up to say 'I'll support you.' There were no physicians, and there was no one who was willing to give the name of a physician who was willing. It was very frustrating in the beginning of this process, in the first, I would say, the first year and a half. Still, to some degree, getting the right information, getting put in touch with those who will support it is difficult or impossible. Even some of the hospital systems that do support Medical Aid and Dying their process is very laborious, and there are so many steps that people have to go through that in many cases they can't get through it all. Our practice we are filling a need. Our whole purpose in being is to fill the gaps in health care that cause people to struggle. One of my mantras is 'Death is inevitable, suffering is not.' Right. We are all going to die, but death does not have to be terribly painful or a struggle. It can be a beautiful, peaceful, transformative process. We've been involved in enough End of Life scenarios that I can say that with great confidence that given the right approach, the right information, the right guidance, the right support it can always be a comfortable and essentially beautiful process. Elizabeth: Something that is important too also is to have people who have experience with these processes these struggles that people have. Not just anyone can make it an easy process. Not just anyone can make it a smooth process. You have to have it those obstacles you have experienced what the difficulties are and where the glitches are and in order to be able to fill those gaps you have to know where they are. Dr. Bob: Right. Elizabeth: Sometimes that comes from just falling into the hole and climbing out which is something we have experienced a few times. Dr. Bob: Having been through it enough times to... and of course we will come across- Elizabeth: More... Dr. Bob: Additional obstacles but we'll help...and that doesn't just apply to the Medical Aid and Dying it applies to every aspect of health care, which of course, becomes more complex and treacherous as people's health becomes more complicated and their conditions become more dire, and their needs increase. Hospice, yes it's a wonderful concept, and it's a wonderful benefit, but in many cases, it's not enough. Palliative Care, in theory, great concept, we need more Palliative Care physicians and teams and that kind of an approach, but in many cases, it's not enough. What we are trying to do is figure out how to be enough. How people can get enough in every scenario. We are specifically here talking about Medical Aid and Dying. In California, the actual law is called The End of Life Option Act. It was actually signed into law by Governor Brown in October 2015, and it became effective June 9th, 2016. I'll note that just yesterday the Governor of Hawaii signed the bill to make Medical Aid and Dying legal in Hawaii. The actual process will begin January 1st, 2019. There is a period of time, like there was in California, a waiting period, while they're getting all the processes in place and the legal issues dealt with. Elizabeth: Which you would think, that would be the time frame that health care intuitions would establish policies, would determine what they were going to do and how they were going to help. Dr. Bob: One would think. Elizabeth: You would think. Dr. Bob: Didn't happen here. Elizabeth: That didn't happen here. Dr. Bob: So maybe Hawaii will learn from what happened in California recently when all of a sudden June 9th comes, and still nobody knows what to do. What we are becoming actually, is a resource for people throughout California. Because we have been through this so many times now and we have such experience, we know where the obstacles are, we know where this landscape can be a bit treacherous. But, if you understand how to navigate it doesn't have to be. Elizabeth: We have become a resource not just for individuals who are interested in participating or who want to find out if they qualify but for other healthcare institutions who are trying to figure out how best to support their patients and their loved ones. TO give them without the experience that they need without having the experience of knowing what this looks like. Dr. Bob: Yup. Training hospice agencies. Training medical groups. At the heart of it, we just want to make sure that people get what they deserve, what they need and what they deserve and what is their legal right. If we know that there is somebody who can have an easier more supported, more peaceful death, we understand how incredibly valuable that is, not just for the patient but for the family. For the loved ones that are going to go on. So let's get into some of the meat of this. I'm going to ask you; we can kind of trade-off. Elizabeth: Okay. Dr. Bob: I'll ask you a question. Elizabeth: Okay. Dr. Bob: You ask me a question. Elizabeth: Okay. Dr. Bob: All right. If you don't know the answer, I'd be very surprised. In general who requests General Aid and Dying? Elizabeth: A lot of the calls we get are from people who qualify. So I don't know if you wanna go over the qualifications... Dr. Bob: We will. Elizabeth: Okay. Dr. Bob: That's the next question. Who is eligible. Elizabeth: Sorry. A lot of the people who call are individuals who are looking to see if they qualify and want to know what the process is. There are people who are family members of ill and struggling individuals, who wanna support them in getting the resources they might need. There are some people who just want the information. There are some people who desperately need immediate support and attention. Dr. Bob: Do you find, cause you get a lot of these calls initially, do you find that it's more often the patient looking for the information or is it usually a family member? Elizabeth: It's 50/50. Dr. Bob: Oh 50/50. Elizabeth: I think it depends a lot on where the patient is in the process and how supportive the family members are. Some people have extremely supportive family members who are willing to make all the phone calls and find all the resources and put in all the legwork. Some people don't, and they end up on their own trying to figure out what to do and how to do it. There are some people who are too sick to put in the energy to make 15 phone calls and talk to 15 different doctor's offices to find out what the process is. A lot of people start looking for information and hit wall, after wall, after wall. They don't even get to have a conversation about what this could look like, much less find someone who is willing to support them in it. Dr. Bob: Great, thank you. So who is eligible? Who does this law apply to? That's pretty straightforward, at least in appearance. An adult 18 or older. A resident of California. Who is competent to make decisions. Has a terminal illness. Is able to request, from an attending physician, the medication that if taken, will end their life. Pretty much 100% of the time. The individual has to make two requests, face to face with the attending physician and those requests need to be at least 15 days apart. If somebody makes an initial request to meet and I determine that they are a resident of California, they are an adult, they are competent, and they have a medical condition that is deemed terminal (I'll talk more about what that means) if I see them on the 1st, the 2nd request can happen on the 16th. It can't happen any sooner. The law requires a 15 day waiting period. That can be a challenge for some people, and we will talk a bit about that as well. In addition to the two requests of the attending physician, the person needs to have a consulting physician who concurs that they have a terminal illness and that they are competent to make decisions and the consulting physician meets with them, makes a determination and signs a form. The patient also signs a written request form that is essentially a written version of the verbal request and they sign that and have two people witness it. That's the process. Once that's completed, the attending physician can submit a prescription if the patient requests it at that time to the pharmacy. Certain pharmacies are willing to provide these medications, and many aren't. But, the physician submits the prescription to the pharmacy, and when the patient wants to have the prescription filled, they request that the pharmacy fill it and the pharmacy will make arrangements to have it delivered to the patient. The prescription can stay at the pharmacy for a period of time without getting filled, or it can be filled and be brought to the patient, and at that point, the patient can choose to take it or not. The patient needs to be able to ingest it on their own. They have to be able to drink the medication, it's mixed into a liquid form. They need to be able to drink five to six ounces of liquid, and it can be through a glass or through a straw. If the patient can't swallow, but they have a tube-like either a gastric tube or a feeding tube as long as they can push the medication through the tube, then they are eligible. The law states that no one can forcibly make the patient take it. They have to be doing it on their own volition, willingly. Okay. So, that's pretty much the process. Is there anything that I left out? What is a terminal illness? That is a question that is often asked. For this purpose, a terminal illness is a condition that is likely or will likely end that person's life in six months if the condition runs its natural course. Most of the patients that we see requesting Medical Aid and Dying have cancer. They have cancer that is considered terminal. Meaning there is no cure any longer. It's either metastasized, or it involves structures that are so critical that will cure them. In most cases, there is no treatment that will allow them to live with a meaningful quality of life, past six months. Of course, it's difficult to say to the day, when somebody is going to die, but there has to be a reasonable expectation that condition can end their life within six months. We also see a number of people with ALS, Lou Gehrig's disease, amyotrophic lateral sclerosis. That's a particularly sensitive scenario because those people lose their ability to function, they lose their motor function, and as it gets progressively, further along, they lose their ability to swallow. They can lose their ability to speak and breathe. The time frame of that condition can be highly variable. We see people with advanced heart disease, congestive heart failure, advanced lung disease other neurologic diseases. Elizabeth: The gamut. Dr. Bob: We see the gamut, but those are the majority. We've talked about who's requesting this for the most part, who's eligible? A patient who is competent has a terminal diagnosis and is an adult resident of California. We talked about the requirements, what's the process. Let's talk a little bit about the challenges that we've identified or that other people have identified. At the very beginning of this process, I became aware that the law was going to begin taking effect just a few months after I started my medical practice at Integrated MD Care and I figured great this is progressive. We are kind of like Oregon, we are going to have this option available, and I felt like it was the right thing. I've always felt like people should have more control and be able to be more self-determining. Especially at end of life. Who's life is it? Right? Who are we to tell somebody that they have to stay alive longer than they want to. That never made sense to me. I think if you're not in this world of caring for people at end of life or you haven't had an experience with your family. Most people figure when people are dying they get taken care of adequately. Hospice comes in, and they take care of things. IN some cases that's true. In many cases, it is the furthest thing from the truth. People struggle and suffer. Patients struggle and suffer, families suffer and if we have another option, if we have other options available wouldn't we be giving them credence? My answer is yes, we should. So when the law was coming into effect, I figured physicians would be willing to support patients because it's the right thing. I just assumed people would go to their doctors and say 'we now have this law, can you help me' and the doctors would say 'of course.' It didn't quite work out that way. Now I understand why I see it more clearly. People started calling me to ask for my support, and I started meeting with them and learning about what they were going through and learning about all of the struggles they've had through their illness and trying to get support with what is now their legal right and they were getting turned away by doctor, after doctor, after doctor. I learned what I needed to learn about the process and I started supporting a few patients here and there. As time went on, I saw A)what an incredibly beautiful, beautiful process it is. What an extraordinary peaceful end of life we could help people achieve and the impact that it has on the families was so incredibly profound that I know that this was something that I needed to continue supporting. With the hope that other physicians would come on board and there wouldn't be such a wasteland and so much struggle because I can only take care of some many people. Well, it's a year and a half later, and I do think things have- Elizabeth: Improved. Improved some. Some of the hospital systems in San Diego certainly, have developed policies and process to support patients through the Aid and Dying, sometimes it can still be laborious and cumbersome, and hiccups occur that create great challenges and struggles. But what we've developed is a process that is so streamlined. Like Elizabeth mentions, we've come across so many of these obstacles and these issues that couldn't have really been anticipated. That have to do with hospice agencies not wanting to be supportive. Of not being able o find a consulting physician for various reasons. Coroners and medical examiners not understanding anything about this process. So we've had to be educating them to make sure that the police don't show up at somebodies house in the middle of the night. It's become a real passion for both of us and our whole team. To be able to do this and to be able to do this really well, as well as it could possibly be done. More doctors are coming on board and being open to this. I'll tell yeah, I'm not so sure that's the right thing, and we have thoughts about that. I've been talking a lot, so I wanna sit back and let you talk, take a sip of my coffee and I wanna hear your thoughts on- Elizabeth: Other doctors. Dr. Bob: Other doctors and how they perceive this. Why we may not just want every doctor- Elizabeth: Doing it. Dr. Bob: Doing it. Elizabeth: I think it's really important that other doctors be open to it. Especially open to the conversations. I think one of the things that has been the most important for me is to help people start those conversations with their doctors, with their families, with other healthcare providers. A lot of the doctors are restricted by policies where they work or by moral objections or just by not really being familiar and being concerned that they might misstep. I think that having doctors come on board first in terms of conversations is fantastic. Then also learning the process is important. As simple as it is in the way that you described it it's more complex than that. There are a lot of small details, paperwork, and requirements. Things have to be done a certain way in order to be compliant with the law. There are aspects of supporting the family. This is a very unique experience. If you as a physician don't have time to have longer conversations with patients and families, if you don't have time to provide anticipatory support and relief for the grieving process or for the dying process, it can be a struggle for the patients and families to go through this even if they have the legal support that they need. I think that that's one of the things you were referring to in terms of why it's not necessarily good for everybody to come on board. Dr. Bob: Yeah. Because if they say that they will support a patient and be their attending physician through this process, they could start the process and then come across some of these hurdles that they don't know what to do with and it could completely derail the process. It's too critical when patients finally feel that they now have this option available to them, that they see the light at the end of the tunnel, every little misstep and every little delay, is- Elizabeth: Excruciating. Dr. Bob: Excruciating. We see that happening over and over again. So when people find us and we assure them, we will help you get through this without any more hiccups, without anything getting derailed, they are very cynical. We tell them- Elizabeth: They've been so many doctors, they've been to doctors who've said... Dr. Bob: They've been screwed, they've... Elizabeth: We will help you, and they haven't gotten the help that they need. Dr. Bob: There is nothing that's more painful for somebody, an individual or a family member who's finally come around to wanting to support mom or dad or husband or a wife or a child and then to have it be taken away from them or threatened. We make ourselves available. There are times when we say we are available for you anytime, day or night; you can contact us. They start calling us; I've gotten calls at 2 in the morning from somebody just to say I just wanted to make sure you were really there. That you really would respond. They can't wait to get to the endpoint. Not even because they are ready to take the medication but because they are ready to have the peace of mind and the security of knowing that they have an easy out, rather than have to struggle to the bitter end. Elizabeth: This is really about empowering the patient and the family. This is all about providing them with the opportunity to do what they want to do with their life. To live it the way they want to live it and to end it the way they want to end it. Not in a way that is incongruent with their moral, ethical, spiritual life choices. In a way that supports the way that they've lived, the principals they've lived by and the things that matter to them. I would also say that the difficulties that doctors have had and the struggles that we've had in working with other physicians it's not because they don't care about their patients. It's not because they don't want the best thing for them. Maybe they disagree with what the best thing is, or maybe they feel that they are not able to provide sufficient support. There are a lot of really good doctors who aren't able, for whatever reason, to do this. Dr. Bob: That's a great point. I think a part of it is that sometimes they work for organizations that won't allow them to, and that happens often. Then they don't understand the process; they are intimidated by it. They don't want to mess it up. And, they are so busy that they feel like it's going to require too much time out of their day. Elizabeth: Which it does. Dr. Bob: Which it can, and they don't have any way to bill for that. They feel like they are going to be doing everybody a disservice. But unfortunately, that often leads to the patients being in this state of limbo and not knowing where to turn. Elizabeth: Thinking that they maybe they have started in the process and Dr. Bob: Not, we have certainly seen that. Elizabeth: Discovering later that they haven't. Dr. Bob: So we are going to close it down here shortly. One of the things, and you spoke about empowerment, and how really important that is, both for the patients and for the families. One thing that I've recognized, so now I've assessed and supported well over a hundred patients through this process. I've been with many of these people when they've taken the medication and died. So, I've seen how beautiful and peaceful it is. It literally in most cases, a lot of times there's laughter and just a feeling of incredible love and connection that occurs with the patient and the family in the moments leading up to that. Even after they have ingest the medication we have people who are expressing such deep gratitude and love and even laughing during the time because they are getting freed. They are not afraid, they are almost rushing towards this because it's going to free them. Most of the time they fall asleep within a matter of minutes and die peacefully within 20 to 30 minutes. Sometimes sooner. Occasionally a bit longer. But, if anyone is wondering if there is struggle or pain or flopping around in the death throws. None of that. This is truly...this is how I want to go when it's my time. The one thing that seems very consistent with the patients that I've care for through this process is, they have a physical condition that is ravaging their bodies. Their bodies are decaying, they are declining, they are not functioning. Their bodies are no longer serving them. But their spirit, is still strong. They have to be competent to be able to make this decision. Most of the time they are so determined to be in control of what happens to them, their spirit has always been strong. They have lost control because their bodies no longer function and that is irreconcilable for them. They cannot reconcile this strong spirit in a body that is no longer serving them and that is only going to continue getting worse. That's the other important part of this. These are people who are dying, they are not taking this medication because they are tired of living. They are taking this medication because they are dying and they don't see any reason to allow their death to be more prolonged and more painful, than it needs to be. They are empowered, and we are empowering people to live fully until their last moments and to die peacefully. My last little note here is, why do we do this? Well, that's why we do this. Elizabeth: Yeah. Dr. Bob: Because people deserve the absolute best most peaceful, most loving, death. This is in many cases, the only way to achieve that. I think we are going kinda wrap it up. We obviously are passionate about this topic. We are passionate about wanting to share the realities of it. We don't want there to be confusion, misconceptions, misunderstandings. Aid and Dying is here; it's not going away. It's going to continue to expand throughout our country. We are going to get to a place where everybody has the right to determine when their life should end peacefully when they're dying. I'm very happy and proud to be on the forefront of this. I know it's controversial, I imagine there are people who think that I'm evil and I'm okay with that because I know. I see the gratitude that we get from so many patients and families. When we go out and speak to groups about this the vast majority of people are so supportive and Elizabeth: Sort of relieved, even the professionals are so relieved. We have a patient, we have been helping another doctor support that patient, and he's so relieved and so friendly and so grateful just to be able to provide the support that he wouldn't otherwise be able to provide. It's not just the patients; it's everybody we engage on this, it's really amazing. Dr. Bob: Thank you. It really is an honor to watch you engage with the patients and families and to be as supportive of what we're doing. It's remarkable. Elizabeth: Thank you. Dr. Bob: We will talk about some of the options that people have when they don't qualify for Aid and Dying because there are other options. We wanted to address some of those options as well but not on this live; we'll do that maybe next time. Thanks for tuning in, have an awesome day, and we will see you soon, take care. Photo Credit: CENTERS FOR DISEASE CONTROL AND PREVENTION/WIKIMEDIA COMMONS PUBLIC DOMAIN