How to Create Empowered Endings with Dr. Bob Uslander

Dr. Bob Uslander, based in San Diego, runs a medical practice called Empowered Endings with his wife and partner, Elizabeth. Their work focuses on supporting people through difficult end-of-life journeys and providing personalized in-home care, including palliative care, dementia care, geriatric care, and more. With a holistic, high-touch approach, their team of compassionate professionals ensures patients and their families receive the support they need during these challenging times.

A key aspect of their practice is integrating end-of-life doulas, which adds immense value to their model of care. Dr. Uslander and his team have also founded an institute and community to provide education, training, and support for healthcare professionals who are committed to improving end-of-life care. This community also includes individuals looking to ensure a gentle and peaceful transition for themselves or a loved one. They operate a foundation dedicated to these causes.

Dr. Uslander shared his journey from working in emergency medicine, where he experienced moral injury, to transitioning into palliative care. He discovered the beauty in fully supporting patients through their end-of-life process, realizing how underserved families often are in the traditional healthcare system. This realization prompted him to establish his own practice in 2016.

A major mission of Empowered Endings is educating the public about palliative care and hospice care. Palliative care focuses on managing symptoms and improving the quality of life for those with serious or complex illnesses, while hospice care is reserved for those who have a life expectancy of six months or less and are no longer pursuing aggressive treatments. 

Dr. Uslander is also an advocate for MAID (medical aid in dying) and VSED (voluntarily stopping eating and drinking), supporting patients in California who qualify under the state’s legal framework which we talk about both processes and how they work. His practice offers a compassionate, empowering approach, helping individuals ma

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Transcript

[00:00:00] Bob: I find that the experience that the final days of life for people who go through this process and the dying process itself and the grieving process are much different and much gentler for people who go through medical aid and dying. 

[00:00:16] Jill: Welcome back to Seeing Death Clearly. I'm your host, Jill McClennen, a death doula and end of life coach.

[00:00:22] Here on my show, I have conversations with guests that explore the topics of death, dying, grief, and life itself. My goal is to create a space where you can challenge the ideas you might already have about these subjects. I want to encourage you to open your mind and consider perspectives beyond what you may currently believe to be true.

[00:00:41] In this episode, Dr. Bob Uslander, co founder and medical director of Empowered Endings, shares his journey from emergency medicine to palliative care, discussing how he found his true calling and supporting patients through their end of life experiences. Dr Euslander emphasizes a holistic approach addressing the physical, emotional, intellectual, and spiritual needs of both patients and families.

[00:01:07] He talks about the value of compassionate, personalized, in home end of life support. We also talk about medical aid in dying, also known as MAID. And voluntarily stopping eating and drinking, known as Vaid, and how his practice educates others about these practices as well as about palliative care and hospice care.

[00:01:28] Thank you for joining us for this conversation. Welcome to the podcast. Bob, thank you so much for coming on today. Can you just start us off, tell us a little bit about who you are, even outside of your work, maybe where you came from originally, anything like that. 

[00:01:42] Bob: Sounds good. I come from the Midwest. I was born and raised in the Chicago area, and that's where I spent my childhood and youth.

[00:01:49] I went to college in the University of Illinois, and I, after college, I found my way out to the West Coast, kind of found heaven in Southern California, and then I went to medical school at UCLA. And I had a phenomenal education and a great time out there. After medical school, I decided to go back to Chicago for my training, and I was trained as an emergency physician.

[00:02:13] After I finished my, my training, I worked in Chicago for a few years. Had a lot of great experiences, uh, working in different environments. Worked at Cook County Hospital for a while, um, a few other locations. So a really broad range of, of experiences as an emergency physician. I moved from Chicago to Guam, where I lived in practice for a few years with a young family.

[00:02:36] Then I moved to a small community in Northern California near Yosemite, which was also beautiful, had access to lakes and rivers and mountains, and had a wonderful experience being sort of a Of a, a rancher had had horses and goats and chickens. And so that, that was a lot of fun. And I was working as an emergency physician throughout all of those different moves and relocations.

[00:02:59] And then I relocated to San Diego in 2011. And. Along with that transition to a new home and community, I was also transitioning to a new career and that had happened over a period of a number of years, due to a number of circumstances, some of which we'll explore during our time together. I now live in San Diego and I have a medical practice with my wife and partner, Elizabeth.

[00:03:23] The practice is called Empowered Endings and we support people going through challenging end of life journeys. We do palliative care and end of life care, dementia care, geriatric care. It's all in home, very high touch, personalized, holistic, with a team of amazing angels who show up for people during stressful, challenging times.

[00:03:44] We're bringing end of life doulas into the model and finding great value there. We also created an institute. and a community to provide education, training, and community support for, for people who are in healthcare and, and realize that we need to do a better job of taking care of people at the end of life and are committed to that, as well as a community of people who are lay people and maybe looking forward to how to make sure that their end of life journeys are gentle and peaceful, or how to support a loved one going through an end of life journey.

[00:04:17] We have a foundation as well, the Empowered Innings Foundation was developed to help provide financial support for people who can't afford some of the, the services and support necessary and really valuable through the end of life journey. And there's some other visions that we have that we are anticipating will be unfolding for the foundation soon.

[00:04:36] So that's my sort of the recap of where I come from, where I am and what I'm doing. 

[00:04:41] Jill: I think it's very important work. What made you transition from being emergency room to focusing solely on the end of life with people? 

[00:04:51] Bob: So it was, it was, you know, as an ER doctor, you're, you're training and you're, you're sort of the, the mode of operation is to try to save everybody, right?

[00:05:00] You, you, you try to resuscitate anybody who is dying. Often they're brought in, in, in a precarious position. They might have collapsed. At home or, or out in the community, paramedics are, are bringing them in and doing whatever they can to try to save them. In the emergency room, you typically continue those efforts.

[00:05:20] You continue to try to do anything possible to, to save this person. And even when people are not in cardiac arrest or at that extreme, point, somebody comes into the ER, the, the immediate response is to figure out what to do to fix it and to keep them alive. And I started a residency in, in 1989, actually.

[00:05:42] And at that point, there wasn't a lot of attention being placed on advanced health care directives. There wasn't a pulse there. It was really. We tried, tried to resuscitate or save everybody. We thought people would come in from nursing homes who had been in the hospital multiple times and they were unconscious or barely conscious.

[00:05:58] They'd been through so much and no one was talking about whether what we were doing was appropriate or not. And over time, I think most emergency physicians or ER nurses, people who work in the hospitals experience a certain amount of moral injury. And I certainly had my share and I had an experience in 2001.

[00:06:19] So I'd been in a practicing emergency physician for about 10 years at that point. And I had a friend who became very ill with metastatic cancer and ended up dying. dying at the age of 32 with three little kids. His name is Darren and Darren had metastatic melanoma and he became more ill and the cancer spread to his lungs and in different parts of his body.

[00:06:44] And he became very frail, having more trouble breathing and talking and getting around. And as he got more ill, I was involved very, very closely, connected with him and his family, and we brought in the hospice agency from in this small town, and I had really never experienced that care before. I'd never really associated with a hospice service.

[00:07:06] And it was, it was remarkable how different it was. His end of life journey was really well supported and gentle, and we were able to create beautiful experiences for him and the close friends and family. As he took his last breaths, I was there with him, helping to comfort him, helping to make sure that he wasn't struggling.

[00:07:26] And it was just really It was completely different than any death I'd ever experienced. And it was beautiful. It was tragic, but it was beautiful. And he died September 14th, 2001. So it was just three days after 9 11. And it was a really amazing time because it, in a sense, we were the small group of people who were on a sitting vigil with him and, and, and with him and just in experiencing

[00:07:54] environment. We were sort of protected from the chaos of what was happening out in the world and the fear and the terror. And so there was something really magical about that whole time. And that really just stuck with me. And it changed my approach. It changed my understanding of what was possible. And that was the initial seed.

[00:08:12] And it just kept growing. kind of growing over time and it wasn't, and a couple of years later, I started a home care, a house call practice for homebound seniors and then a home care company to provide additional support and resources. I kept moving in the direction of providing solutions and filling some of the gaps in the community related to the elderly, frail, and end of life arena.

[00:08:35] And I, and when I came to San Diego, I, I, I just completely went on this journey, transitioning away from emergency medicine, which wasn't easy because that's what paid for my lifestyle. That's what took care of my family and all the things that we needed to do. I couldn't just transition because I didn't have the skills.

[00:08:54] necessarily to be a palliative care or hospice physician. I had to learn that. I was given a chance by the owner of a company that does palliative care to help build that company. I started doing palliative care, going into people's homes, and developing relationships with the patients and families.

[00:09:12] Through that couple year journey, I discovered How beautiful it can be to fully hold and support a patient through the end of life journey. I also discovered how much the families need and the loved ones and how little is available for them in the traditional healthcare system. And that's what prompted me to start my own practice in 2016.

[00:09:33] And from there, it's just been an evolution and finding additional gaps that need to be filled and educating the community and teaching and building. And it's been an amazing, magical journey. 

[00:09:47] Jill: So you talk about palliative care, and I know there's probably a lot of people that I don't know if they've been listening to my podcast for a while, they probably at least have some idea of what that is.

[00:09:56] I had never heard of palliative care until maybe four years ago, right? When I first started my training to become a death doula, somebody was like a palliative care doctor. And I was like, Oh, what doctor? I have never heard of that before. So What are some of the main differences between what a quote unquote traditional doctor would do versus a palliative care doctor?

[00:10:16] Bob: Great question. There is a lot of confusion, misunderstanding and lack of awareness about palliative care and hospice care. One of our main missions is to educate people about what is available through those services and what isn't available. Interestingly, when I first started working in the palliative care arena, very shortly before that, I also didn't know what palliative care was.

[00:10:39] I was a physician practicing, this is 2013, so 11 years ago, and it wasn't clear to me what the difference was between palliative care and hospice care. So, it's not surprising that many lay people are confused. Even 11 years later, when most hospitals have palliative care services, and many communities have palliative care available, it's still misunderstood.

[00:11:02] It's really important for people to know what it is, what it isn't, how to access it, when it's enough, when it's not enough. Palliative care is the multidisciplinary approach to taking care of patients. People with serious or complex illnesses. I liken it to really good, high quality medical care. The way medical care should be delivered.

[00:11:21] Palliative care essentially means that you're focusing on palliation and symptom management and helping people navigate the course of an illness. Ideally, palliative care is provided by teams. Doctors, nurse practitioners, physician assistants, nurses, social workers, spiritual counselors. And it's really designed to help people find a way to A, get their symptoms managed appropriately to reduce the suffering, deal with some of the social issues, the navigating additional support services that might be necessary to help out with the patient and family, home care, nursing care, things like that, to deal with these psycho emotional issues.

[00:12:03] The stress, the overwhelm, the fears, and help guide people towards goals of care conversations. How aggressive do you want to be? How much are you willing to go through? What are the pros and cons of the different treatments that might be recommended? At what point would you want to just focus on comfort care and transition into hospice?

[00:12:22] The palliative care is designed. to help address all those issues and answer all those questions. The difference between palliative care and hospice is that to be eligible for hospice, you need to have a life expectancy of less than six months. And if you have a life expectancy of less than six months and you choose to go on hospice care, you get certain things provided to you and you give up certain things.

[00:12:45] I think that's a really important understanding. It's important to distinguish. Hospice is a version of palliative care. Hospice is palliative care. It involves multidisciplinary teams of people focusing on meeting those patients needs in a holistic way. It's explicitly available and covered by Medicare and Insurance for people who have a life expectancy of less than six months and are choosing not to continue aggressive treatment.

[00:13:11] To go on hospice care, people have to give up chemotherapy, radiation therapy, more aggressive types of care, be hospitalized, things like that. Hospice has been around since the 1970s, and it's now a covered benefit, and there's a lot of hospices that are out there. More coming around all the time, especially in certain areas where there's less regulation.

[00:13:31] There's a lot of competition for the same patients. And there's a lot of focus on the bottom line. Hospices become big business. Venture capitalists are buying up hospices. And they're popping up almost every month. I hear of a new hospice agency popping up. And so there's concerns about the quality of care, the consistency of care, what the true focus is.

[00:13:52] And so it's, hospice care is really hit or miss. Palliative care. is also hit or miss, and it's unfortunately not terribly available in most communities. Hospitals have palliative care teams for the most part that can engage with the patient while they're in the hospital and offer support and guidance and anyone who's Going through a really complex health issue and they're hospitalized or they've been in and out of the hospital should absolutely request a Consultation from the palliative care team that should be available and it most likely will be valuable Unfortunately outpatient palliative care once people leave the hospital It's not very well developed and it's not reimbursed well by Medicare insurance It often falls short of meeting people's real needs when they leave the hospital.

[00:14:38] There's a lot there. We can spend hours talking about each one of these, the pros and cons, and I'm happy to do that. Obviously, there's other things we might want to touch on. 

[00:14:47] Jill: Yeah, for sure. There's definitely other things I do want to talk to you about, but I think that was a very clear explanation about palliative care and the difference between palliative care and hospice.

[00:15:00] It is a shame that a lot of people don't know about it or have access to it because so many people get diagnosed with illnesses and they don't have that conversation with their doctor. It's the, alright, well, we're going to fight this, you know, especially cancer, right? That's the big language. We're going to fight and we're going to fight and we're going to fight.

[00:15:18] And I know even for me when I volunteer in the hospital, I'll sometimes go into people's rooms and I'm like, there's no fight left in them. But verbally they're like, no, I'm fighting, I'm fighting. And I'm like, can we maybe not fight anymore? And just maybe relax into what's happening and just take care of you and help you feel better.

[00:15:37] But they're not having those conversations. And so hopefully we're going to head more in that direction where people will know to even ask. Cause like you said, I know the two hospitals that I volunteer at, we have a whole team of people in palliative care and there's still even doctors that will kind of run into in the hospital.

[00:15:55] And they're not telling patients to consider talking to somebody in palliative care until the person's actively dying. And then we're like, well, this, no, this is not. Yes, we will still go in there, but this is not when you should really contact us. But again, that's a whole topic you can talk for hours about.

[00:16:14] I do want to know, you said you do palliative care with your practice, but also you do medical aid in dying. Is that correct? 

[00:16:22] Bob: Correct. 

[00:16:23] Jill: Okay. And so medical aid in dying is also legal in New Jersey. So I have been learning a little bit more about it. I have met. One doctor in New Jersey that does it, I believe there might be two, but there's still not a whole lot of them.

[00:16:39] And I do find there's still a lot of misconceptions about medical aid and dying. And even within, again, the medical community, I was on a Zoom once with a doctor that was talking about How they were totally against medical aid and dying because they took a vow to save people's lives. I'm paraphrasing, but they took a vow to save people's lives.

[00:17:02] And so they didn't feel right taking somebody's life. And I'm like over here trying to be like, I'm not getting involved in this conversation. Probably wise. Exactly. Very wise. But To me, the person is dying anyway, right? You have to have a diagnosis, and I'm sure you'll get more into that, but to me, it's not like they're choosing to take their own life.

[00:17:24] They're dying. And I find that that's a big problem. part of the debate. With all of your experience in medical aid and dying, I don't know, just like share with us honestly, whatever you want, because I'm still learning. And I know there's probably a lot of people out there that are just like, Oh, assisted suicide.

[00:17:42] I'm like, No, don't remember not using that word anymore. Let's get rid of the s word, please. 

[00:17:47] Bob: Well, the laws are explicit that it's not suicide. So, what a person believes is up to them, but the law is clear that this isn't, this is not suicide. What's interesting, I took that same vow, the Hippocratic Oath, and I don't believe there's anywhere in the Hippocratic Oath that says that, that I am dedicated to saving lives at all cost.

[00:18:08] I, I'm committed to doing no harm. That's what the oath is about, it's a, partly, it's about do no harm, and people interpret that differently. Bye. The way that I interpret it is alleviate suffering where possible and recognizing that the relieving of the suffering needs to follow the law in order for me to continue practicing medicine with my license.

[00:18:33] Fortunately, in certain states and jurisdictions, there is a law that allows us to go through a legal process with patients to relieve their suffering. I find that if there is a legal option available to people. who are suffering due to a terminal condition and they're dying, to force them to continue living with the struggle that they're experiencing due to their terminal condition, forcing them to live beyond the point when they're willing to, or feel justified in doing so.

[00:19:03] to those people, giving them another option, giving them access to an option that allows them to gently, peacefully, with dignity, choose the time and place of their death, the matter of their death and the people who are going to be with them. That seems to me to be a real gift. When I started my practice in 2016, and at the time, Medical aid in dying wasn't legal in California.

[00:19:29] I, I was aware that the law had been signed into effect by the governor a few months prior, and that it would become legal in June of that year. I started my practice in January. I, I thought it was a good thing. I thought it was, would be something that would be supported, that paid terminally ill patients would have an option.

[00:19:48] I was, I was misguided, not misguided, but I, I had this false impression that doctors would now be able and willing to support patients. Not every doctor. I realized that not everybody feels comfortable or would choose to participate. But I was really surprised at how few doctors. We're willing to support patients through the process.

[00:20:10] It became apparent to me within the days leading up to the law going into effect, people started calling my office and asking if I would support them. Many of those people had contacted their own doctors. Someone had contacted 6, 8, 10 doctors who were part of the systems they were involved in, and nobody would help them.

[00:20:29] Nobody would even consider it. So, I reached out to a couple of these patients, their families, and I learned about their fight and what they were suffering through and what they were hoping for. I realized that this is something that I feel strongly about. I feel strongly that people should have free will.

[00:20:44] People should not be forced to suffer when they have another option, and all efforts have been made to alleviate their suffering, and they're still suffering. I learned about the process. I talked to the doctors in Oregon and Washington State where it had been legal for a number of years. I got myself.

[00:21:00] educated and I started supporting patients. I remember my first patient. I remember the, the, the early days when it was something that was just so different than anything I had now engaged in before, other than my friend, Darren, who didn't do medical aid in dying. It wasn't legal. It was 2001. We knew that when he was close and we were, we were able to create this really beautiful.

[00:21:22] journey for him and his family, we started doing that for patients who were going through medical aid and dying. We, we really engaged with them. We counseled, we supported, we brought massage therapists and music therapists and Reiki practitioners. We just helped to create this beautiful. We did that for patients who weren't going through medical aid and dying as well.

[00:21:41] There was something about people Being empowered, knowing they had control over whether they were going to continue struggling or not. And often, just having access to the medication, knowing that they had the ability, the power, to end their suffering in a manner that felt good for them. Gave them hope.

[00:22:02] Uh, a really deep sense of peace of mind and often they chose to live longer than they might have otherwise. Sometimes people ask to be medicated more heavily when they're struggling and they don't see any. I found that for some of the people who got access to the medication through the medical aid in dying process, it gave them an infusion of life as opposed to And then any of their life sooner, they had an out, uh, a way out and that gave them a sense of peace that allowed them in some cases to continue going longer and to feel more secure about every moment that they were alive.

[00:22:38] It also allowed them to engage with family members in a way that they might not have. Previously, the family members who supported them were truly giving them a gift and, and not trying to block this and not trying to make them feel like they shouldn't do it. Many people would have little gatherings and celebrations and reunions when they had set a date.

[00:22:57] I find that the experience that the final days of life for people who go through this process and the dying process itself and the grieving process are much different and much gentler for people who go through medical aid and dying. So, I'm a big fan. I never tried to encourage someone to go down this process.

[00:23:18] We don't promote it in, in any way other than to make sure that people have the information. When I meet with people who are terminally ill, I don't bring up the, the idea of medically and dying, unless they ask about their options. At which point we lay out all the options, including medical aid in dying, including continuing standard hospice and palliative care, including voluntarily stopping eating and drinking, which is another really important topic to address around an empowered legal end of life option.

[00:23:47] Jill: Yeah, and I would like to get to be said, which is the voluntarily stop eating and drinking. I do have a question about the process of somebody, if they wanted to do medical aid and dying, it has to be a six month or less diagnosis. Is that correct? 

[00:24:03] Bob: Yeah, the requirements for medical aid and dying and every, every Every state has their own law and they are all similar.

[00:24:11] All of the laws in the country are based on the original law in Oregon. The requirements are similar with some exceptions. There are certain aspects of the process that are different. I can speak to California. I can't really speak to, at this point, to New Jersey or other states. In California, in order to qualify for medical aid in dying, a person needs to be an adult, 18 years of age or older.

[00:24:36] They need to be a resident of California. And, you know, people can actually achieve residency in California by having a lease. They don't have to own property. They don't have to pay taxes. They don't have to be a registered voter. If they come to California and they have a lease, then With an intention of remaining in California through their end of life, they can become a resident of the state in order to qualify for this.

[00:24:59] They need to be mentally competent to make informed medical decisions, and they need to have a terminal condition with a life expectancy of less than six months. It's not always straightforward. whether somebody has a life expectancy of less than six months. There are times when people are suffering, and they would like to die yesterday because of the severity of their condition and limitations and their struggle, but they may not have a condition that is likely to end their life within six months.

[00:25:28] That can sometimes be challenging because if we can't identify a condition that is likely to end their life in that time frame, we can't qualify them for medical aid in dying. And one of the most challenging conversations that I have around this with many patients and families is not being able to support them through the process.

[00:25:47] Because of that, because of that requirement, people with ALS, they lose their motor function. They lose their independence. A lot of people don't feel like they have much dignity. And there are a lot of younger people who are going through that. So they go from being fully functional, independent, you know, working, raising families, to within a handful of months or a year or two, not being able to walk, not being able to, you know, They get in another bed, not being able to wipe themselves in the bathroom, not being able to feed themselves, unless they have trouble with their breathing or swallowing, they don't have a short life expectancy.

[00:26:21] They can go on like that for years. So those are some of the types of cases of people who might want the security of the bathroom. Having access to the medication, but wouldn't qualify. Even people who are elderly in their 90s. There are people in their 90s, I've encountered people over 100, who are done.

[00:26:41] They're at a point where they just do not want, they don't see the point in going on every day because they've lost their hearing, they've lost their sight, they've lost their mobility, and they're in pain from arthritis, and it's just a struggle. They go to sleep every night, hoping they don't wake up.

[00:26:57] They wake up every morning disappointed that they have to struggle through another day. But they don't have a terminal condition, so they don't have access to this option. This six month requirement, while I understand why we have it, and I think it's important to have some constraints, and I don't want this to be available for everybody who's, you know, struggling and suffering, it does create some additional challenges for people.

[00:27:19] Often, those are the people who we bring up the option of voluntarily stopping eating and drinking. We can come back to that at some point. Those are the requirements to qualify for medical aid in dying. If somebody meets those requirements, The process is that they make a request to an attending physician, and it can be in person or through telehealth.

[00:27:38] Always better to be in person with people if you can for these conversations. They need to have a second request with the attending physician after 48 hours, and it used to be a 15 day waiting period in California, and there was an amendment in 2022 that shortened it to 48 hours. I know there are some states that still have longer waiting periods.

[00:27:57] 15 and even 21 day waiting periods. And that can be very challenging for people who are really ill and declining quickly. They need to have a second independent physician assess them and confirm that they qualify. That's the consulting physician. The patient needs to sign a written request form witnessed by two people.

[00:28:15] Once those requirements are met. And the two visits with the attending physician, the one visit with the consulting physician, and turning in the written request form, they can request the prescription be submitted to the pharmacy. Only certain pharmacies will work with these medications and provide them.

[00:28:31] And if the patient chooses to have the prescription filled, it will usually be delivered to them and they have the ability and right to ingest it. We make sure that for our patients. Unless they specifically request not to, we have an experienced professional with them and the family when they take the medication.

[00:28:50] I think that's extremely important. The counseling that goes into the whole wraparound support for people going through this process is critically important. Partly for the patients so they have an understanding and they're able to express their fears, concerns. But it's really mostly for the family members who are going to be left behind.

[00:29:08] When it's done well and the support is really robust and all of their needs are met and addressed and there's support at the time of the ingestion and after, it can be a beautiful thing. People will relate the experience as being something really transformational and beautiful. When it's not done well, when it's more transactional and the doctor's providing the prescription, Don't really understand how to optimally care for the patient and family through the experience.

[00:29:34] It can be a very different and at times traumatic experience from our standpoint, 

[00:29:38] Jill: and the person has to be able to ingest it themselves. Is it pills or like a pound or a pills? Work? 

[00:29:46] Bob: The medication comes in a powder form, and it's a combination of medications, including morphine, Valium, uh, amitriptyline, which is an antidepressant.

[00:29:55] Phenobarbital and digoxin, which is a heart medication. It comes in powder form, and just prior to ingesting the medication, it gets mixed with two ounces of water or juice. It dissolves, and the patient either drinks it, or if, If they can't swallow for some reason, if they have a gastric tube, the medication can be administered through the gastric tube.

[00:30:18] If they don't, they can have a rectal tube placed into the rectum, uh, and the medication gets put into a syringe and then gets, uh, pushed into the tube that's in the rectum. The patient has to be responsible for drinking the medication. They don't have to. Hold the cup. If they can't, they don't have the ability or if they're terribly shaky, they can drink from a straw.

[00:30:37] Anybody can prepare the medication for them. Anybody can hold the cup for them. If it's going through a rectal tube or a gastric tube, they have to be responsible for pushing a plunger on a syringe that will push the medication into their system. This is something that is fully initiated and executed by the patient.

[00:30:57] It's facilitated by other people so that they can get their needs met, but no one can do this for the patient. The patient needs to be fully competent at the time of all of the requests with the doctors, and at the time that the medication is taken. If the patient needs it, doesn't have mental capacity, if they don't know what they're doing, if they don't know what the impact will be, it can't be done to them.

[00:31:20] Nobody can give them this medication without them being fully aware. And if they do, it would be considered murder, honestly. Even if a family member understands what the person wants and is doing it out of compassion, it's illegal. And people need to be aware of that. 

[00:31:37] Jill: Have you ever had somebody that went through the whole process, got the medication, but then were not able to administer it themselves, so were not able to use it?

[00:31:48] Bob: It's not infrequent for people to get the medication, to have the prescription available, or even to have the medication on hand and not use it. In my experience, it's probably evenly divided between people who decline and are no longer able to. Go through the process, but might, if they could. But the things happen quickly, or they lose their cognitive ability, they have a stroke, or their condition requires that they be medicated more heavily, and they're no longer able to think clearly.

[00:32:17] Then they die naturally. Sometimes it's not pleasant. Sometimes missing that opportunity results in a death that they would have chosen to avoid. Other times, And I think this happens pretty frequently as well. People get the prescription, they get the medication, because they're trying to avoid a struggle, or they're afraid that dying is going to be painful, and they don't want to do that.

[00:32:38] And as things progress, and it gets further along, they don't struggle significantly. They're not in a lot of pain. Often people can die gently. It's not guaranteed, which is why people look for other options. But there are times when the fears that they have don't come to fruition, and they are allowed to gently die without having to do anything active about it.

[00:33:01] And in those cases, the medication goes unused as well. And that's okay. Right? I mean, it's the way I look at it, going through the medical aid and dying process is like an insurance policy. It's suffering insurance. We buy home insurance and auto insurance. With the hope that we'll never need to use it.

[00:33:19] Same thing with life insurance. There's a hope that we hope that we won't die prematurely where the insurance is necessary. I think just like those types of insurance, medical aid in dying provides the security of knowing that if things go a certain way, then you have a way to manage it and deal with it that you wouldn't otherwise.

[00:33:37] Jill: And that I think brings us back to VSED, because again, if you have something like ALS, You don't have that security. You don't have that type of option to say, once it gets to this certain point, and for me, this is my line, I want to take this medication. And so the only option that somebody like that would have would really be to voluntarily stop eating and drinking.

[00:34:02] But that process I know, again, a little bit about it, but not really that much. So how does that one work? 

[00:34:09] Bob: Well, you know, people have been dying voluntarily through stopping eating and drinking since humans existed. That's a natural way to die. At some point in the course of illness, many people are no longer able to eat.

[00:34:22] to eat or drink. And sometimes it happens because they're so ill and there's and swallowing has become more challenging and they're at risk of aspirating, coughing, choking when they drink. Sometimes they're just so weak and they just don't have an interest in eating and drinking and their bodies are shutting down.

[00:34:39] Sometimes, They're requiring to be medicated for comfort and when they're medicated heavily, they're not awake enough to eat or drink. It's sort of the natural, the natural progression for a number of different end of life scenarios. When somebody makes the decision to stop eating and drinking in an effort to end their life and the suffering that they're going through, it usually follows a relatively consistent pattern.

[00:35:06] I bring up voluntarily stopping eating and drinking with people who are asking about ways to have a gentle end of life. Again, not promoting it, not encouraging it, letting people know the realities of it, because there is a lot of mis, misinformation and misunderstanding. And I get it. Before I started supporting people through that process and learned about it so that I could be a better guide and support, I had, I would have been very concerned about that.

[00:35:33] Somebody time if they were going to stop eating and drinking as a means to an end I would have thought it would be very uncomfortable and painful and challenging and it could be if not supported properly So the caveat here is a voluntary stopping eating and drinking can be a gentle peaceful and dignified end of life experience, but it needs to be supported properly with, with appropriate education, counseling, guidance, and support.

[00:35:56] When someone stops eating and drinking, typically not much changes over the first 24 hours. And even the first 48 hours, aside from experiencing dryness of the mouth and sometimes the throat, most people don't experience hunger. Some might, but most people don't experience hunger. After the first few days, people start to become weaker.

[00:36:16] And sometimes in the, it depends on the underlying condition, the age, there's a number of factors. But they start to become more sleepy, more weak, getting dizzy when they sit or stand because they're getting dehydrated and dehydration will cause a number of different symptoms. So as things progress, it's really important to have support so that symptoms of discomfort can be addressed.

[00:36:38] Physical support can be available so people don't stand up and fall or go to the bathroom and fall and hit their heads. Most people after somewhere between four or five or six days start sleeping most of the time and then gently kind of slip into a coma. The dehydration causes kidney shutdown and organ system shutdown and most people by day five or six are un, unresponsive.

[00:37:03] And. The majority of people will die between 8 to 10 days. Sometimes it happens a bit faster, and sometimes it can go on a bit longer, depending on different factors and their underlying health condition, cardiovascular status. It's really important to have good support. When we have patients who go through this process, typically they'll get on hospice.

[00:37:24] They have access to appropriate medications for comfort. Hospice can provide equipment for them, a hospital bed, a bedside commode, things that can be sponge swabs. It's really important to keep their mouth nice and moist. We also make sure that patients have a mist spray to keep their mucous membranes sprayed.

[00:37:42] Addressing their physical comfort is really important. Usually, we engage nurses. The patient will pay for private nursing that will be with the patient and family through the process. And that's extremely important so that the families don't feel like they're the ones providing the medical care. That's very supportive of the patient, very supportive of the family, and the patients can get medication to keep them comfortable throughout the process.

[00:38:07] Most people don't need medication unless they have underlying pain conditions that already require pain medication. But as things go forward, it's important to have medication that will help them. help with anxiety, allow them to rest easier, and address any pain that, that happens. We also focus a lot on counseling the families.

[00:38:28] People come into this with a lot of fear and trepidation, and once they have a better understanding of how things will unfold and what support will be available, they can relax a lot around it. Not everyone becomes completely supportive of the patient, but in our experience, we Patients don't typically go forward with this process unless they have the support of their loved ones.

[00:38:49] If they don't have the support of their loved ones, well, That needs to be addressed prior to going forward for those loved ones who are not comfortable with it. They're not around, they don't participate, recognizing that this is controversial and people don't fully understand why somebody might choose this or what might unfold.

[00:39:07] We go to lengths to try to make sure that everybody has the information that they need. And so a lot of. Guidance, and counseling, and time, and hearing, and listening, and holding goes into these cases. The patient needs to be fully competent because this is voluntary. It's not voluntary if the patient doesn't understand what they're doing and we can't support them.

[00:39:27] They need to know this is their choice. They can stop anytime. They don't have to continue. If they don't feel good about the way things are unfolding, they can change their mind. Nobody will withhold anything from them if their choice is to start drinking, start eating. We just want to make sure they understand the realities around what the impact of that is.

[00:39:46] Jill: And so this idea that it has to be voluntary, now if somebody cannot physically feed themselves because of an illness, or if they're on some type of a feeding tube, does that still count as it being voluntary? Oh, for sure. Because you have to rely on somebody else to feed you, but you're still saying, no, I don't want this anymore.

[00:40:08] Bob: Exactly. If you're competent to make decisions, you can let people know that you do not want to be fed or that you do not want anything to go through your feeding tube, just the same way as if you were previously able and responsible for feeding yourself. 

[00:40:23] Jill: Okay. 

[00:40:24] Bob: If you are not competent, if you have advanced dementia, if you had a stroke and you're not able to communicate, to understand the impact of decisions, then, then this is not a legal option.

[00:40:36] Jill: Do you think in our country, and this is probably a way in depth question for the last few minutes, but, you know, I know there's this idea that people. should be able to access medical aid in dying. So I believe in Canada, I spoke with a woman that her father had had a stroke and he was still able to get medical aid in dying in Canada.

[00:40:55] I mean, do you think that's a direction that our country is moving? Or do you think we'll never kind of get there? It's still got to be very much like you have to have six months or less and you have to be able to do it yourself. 

[00:41:05] Bob: So, in Canada, they don't have the six month requirement. It's a different criteria.

[00:41:11] It's, it's a remediable and hopeless suffering, but the person does need to be competent to make decisions. It can't be done to somebody. They have to be choosing this and understanding the pros and cons and the impact. They also allow euthanasia, so the person doesn't have to ingest anything. In Canada, doctors are able to inject medication intravenously.

[00:41:35] That causes the person to die. I don't think we will likely have euthanasia in this country for a long time, if ever. There's just too many variables and opposing forces. And I also don't think we're likely to loosen the criteria in this country any time in the near future. Getting what we've gotten has taken a lot and we don't want to jeopardize it by trying to push an agenda that's too aggressive.

[00:42:02] It starts to lead you down a slippery slope when you remove what are considered to be safeguards to make sure that the people who oppose medical aid in dying don't have more to grab onto and challenge the laws. You know, the medical aid in dying along California was Was challenged and will likely be challenged over and over again by opponents, mostly religious groups, disability groups who have fears about misuse, which have never been founded, never been shown to be the case.

[00:42:36] I want to be very careful about how additional aspects or additional types of laws are introduced, bills are introduced. I know that's happening. I'm just grateful that we have what we have, to be honest with you. 

[00:42:49] Jill: I agree, I think it's important to have the option for people, but I wasn't sure if that was something that was trying to get more broad in, I guess is the word that I 

[00:43:01] Bob: want.

[00:43:01] There are groups who are pushing for it, and I understand why. My fear is that we could lose What is already available to the people who have access to it and go back to a place where there is no access and they don't have the option, like a significant percentage of the population throughout the United States and in many parts of the world.

[00:43:22] Jill: Thank you so much. This was so interesting. I feel like there's probably so many things that we could have gone more in depth about, but I do feel like that was a great overview of palliative care and MADE and VSED so that people can hopefully get a better understanding of it and not have as much fear and anxiety about it because they just don't know.

[00:43:43] They don't understand. Can you tell us where people can find you, where they could reach you, anything you want to share? 

[00:43:49] Bob: The company is called Empowered Endings. And the website is empoweredendings.com for people interested in learning about the services of the medical group. There's a, there's a menu tab for medical services for people who are interested in learning and being educated or joining our online community.

[00:44:06] There's an institute tab. The institute is, we have a lot of really helpful resources and, and, and for valuable information, we have an ebook. called End of Life Options. It has a lot of valuable information that people can download. For people who are interested in learning a bit more about our foundation, our non profit foundation, there is a menu tab for that as well.

[00:44:27] There's a lot there. We're very proud of what we've created and it's being updated, upgraded and enhanced every day. 

[00:44:34] Jill: Wonderful. Yeah, and I'll put a link to the website in the show notes so people can easily find it because I'm going to have to go check out your ebook now. I didn't actually realize you had one.

[00:44:43] So I'm going to go check that out. Thank you so much. I really appreciate you taking the time today. 

[00:44:48] Bob: You're welcome. Nice to be with you. Take care. 

[00:44:51] Jill: In my next episode, I talk with Whitney Chu, a former physician who completed her residency during the pandemic, only to realize that medicine wasn't her long term calling.

[00:45:01] Whitney shares the profound impact of witnessing death, both professionally and personally during that time. And how it shaped her view of the broken healthcare system. She reflects on how her Chinese American background with roots in Vietnam added complexity to navigating the U S healthcare system.

[00:45:19] During her grandmother's illness and death, we discuss her passion for palliative care, the emotional toll on healthcare providers, and the cultural reluctance to openly discussing death in the United States. If you enjoyed this episode, please share it with a friend or family member who might find it interesting.

[00:45:37] Your support in spreading the podcast is greatly appreciated. Please consider subscribing on your favorite podcast platform and leaving a five star review. Your positive feedback helps recommend the podcast to others. The podcast also offers a paid subscription feature that allows you to financially support the show.

[00:45:53] Your contribution will help keep the podcast advertisement free, whether your donation is large or small, every amount counts. is valuable. I sincerely appreciate all of you for listening to the show and supporting me in any way you can. You can find a link in the show notes to subscribe to the paid monthly subscription as well as a link to my Venmo if you prefer to make a one time contribution.

[00:46:14] Thank you, and I look forward to seeing you in next week's episode of Seeing Death Clearly.