Dr Bob Uslander - Discussing end-of-life care

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[00:01:13] Hey and welcome back to Resilience Unravelled. And with me this week, a subject that needs

[00:01:19] to be discussed and a subject which is too infrequently discussed. A subject which for some

[00:01:25] people mind it a little distressing, so a subject that's incredibly topical and a subject

[00:01:29] which I think all of us at some point in our lives are going to connect with. And the subject

[00:01:34] we're going to talk about is going to be discussed with Dr. Bob Uzlander who's joining me today.

[00:01:38] I think from the States, is that right, Dr. Bob?

[00:01:40] Absolutely. I'm San Diego. San Diego. It's, don't tell me it's sunny over there, is it?

[00:01:47] Well, it's a little overcast today but typically by mid-morning the clouds will break and we'll have bright sunny skies.

[00:01:57] I tend not to talk about it too much to folks who aren't in, you know, aren't here because I don't want to make them.

[00:02:04] If it's a consolation, I was chatting with someone from Australia about five hours ago and they had,

[00:02:11] it was Manifuck at night and it was, I think it was something like 85 degrees Fahrenheit.

[00:02:15] So they were, you know, I don't know if they're quite sabadno.

[00:02:19] So Bob, why don't you tell us a little bit about yourself and what did he say that you do?

[00:02:24] Sounds good. So I'm a physician here in San Diego

[00:02:28] and I am a resident originally from Chicago so I really appreciate the Southern California warmth and weather.

[00:02:37] But I'm a physician. I've spent my first 25 years as an emergency physician.

[00:02:41] So I was trained in emergency medicine and I spent, you know, 25 years trying to help save people pretty much if it all costs.

[00:02:49] And over time for a few different reasons, emergency medicine became a pretty stressful type of career.

[00:03:00] It's a great career for younger doctors. I feel like as you get older, the stress and the schedules and become more challenging.

[00:03:12] And for me, I started to really crave a deeper connection with my patients than what could be created in that brief experience in the emergency department.

[00:03:23] And I transitioned, really felt a call in the poll towards supporting people who were approaching them their life.

[00:03:32] And I transitioned into doing palliative care and hospice care about 10 years ago.

[00:03:38] Right.

[00:03:39] And after a couple of years working in a traditional insurance based model for a company in San Diego,

[00:03:47] I found out there was great value in being able to go into people's homes and identify what their challenges were, what their needs were, and help find those resources and support them.

[00:04:00] But I became very aware of some huge gaps in our healthcare system that were universal and causing people to struggle in a way that it was really disturbing to me.

[00:04:15] And the gaps that I discovered were gaps that I felt that I could fill for people who were open to engaging with me in a team in a different way.

[00:04:27] And so I started my own practice about seven years ago. So my medical practice is a very holistic, it's a team of people who show up to provide support, both medical care, emotional support,

[00:04:44] both for the patients and the families who are going through these challenging circumstances.

[00:04:49] And we basically create a village of support around people through their final chapter of life.

[00:04:56] And the name of my practice is called it's empowered endings, and our goal was to empower people to have the kind of end of life experience that we all wanted to serve.

[00:05:05] Yeah. So you've given us lots of go on there.

[00:05:08] So let's start from the beginning. So a couple of basic questions if I may, I mean, I know what goes on with UK, but it's all the arrangements for every different different states in the US.

[00:05:20] Otherwise, all the arrangements for palliative care and the life care different different states.

[00:05:25] Yeah, I don't know how things go in the UK. I'm assuming that there's the similar to here, there's hospice care, which is available for people who have a terminal illness.

[00:05:37] Our insurance, you know, our insurance structure is such that if somebody is approaching their final, you know, the final chapter and let's say that they have cancer and they've been undergoing treatment for the cancer.

[00:05:52] And they're at a point where the treatments no longer helping or they're no longer able to tolerate the treatment.

[00:05:57] And you know, they're looking to have more of a gentle comfort focused approach. They'll refer to hospice care.

[00:06:08] Hospice is cut care is covered by my Medicare insurance.

[00:06:14] And what you get when you go on hospice care is a nurse who will come to your home and do an assessment and help to navigate medications and other types of treatments.

[00:06:28] They will typically communicate with a doctor who never sees the patient. Once people go on hospice in this country, the vast majority of them will never see a doctor again, which to me is ludicrous.

[00:06:39] The idea that at this time of life when everything becomes extremely challenging and scary and so much is happening, it's very dynamic.

[00:06:51] The idea that doctors are no longer actively engaged in taking care of patients or communicating with families is it doesn't make sense.

[00:06:58] And I think it causes a lot of frustration and a lot of unnecessary struggle.

[00:07:04] There's a lot of confusion about end of life care. Generally, isn't there? You even in the medical profession, you'll see older people who have end of life situations going on where they'll suddenly have a doctor arriving who will start to treat them.

[00:07:19] As if they are going to it's almost like certainly for our and our world. Here is linked up, and I think I know one of you what you think about this is maybe as we don't think enough about the subject early enough so we don't maybe write a pathway have a plan about issues explicit such like I think we have a general reluctance not to talk about the end of our own life. What would you say about that?

[00:07:42] Well, I think that's true. I think that people are often reluctant to talk about it. I also know that doctors and people in healthcare are uncomfortable talking about it. They don't receive any training very little training if at all in how to approach the end of life and how to help navigate people through it.

[00:08:01] So there's a lot of discomfort in having those conversations so they often don't happen. And so planning it doesn't happen. Some people create an advanced healthcare directive, which is a document that identifies who they would want to provide care for them and speak for them if they can't.

[00:08:18] And it also indicates what they would want if they were.

[00:08:22] They were imminently dying if they had a condition that was irreversible and they were on the brink of death.

[00:08:32] They wouldn't want aggressive treatment CPR things like that. There isn't a lot of discussion about the actual, the true path that most people take which is not I'm okay now and I'm on the brink of death, you know, the next day.

[00:08:51] Most of the time it's a series of events. It's a series of hospitalizations, treatments, things where the quality of life starts to erode. The people become more limited, more restricted.

[00:09:07] And they start to think about how much more of this am I willing to endure? What are the options if I decide that I no longer want to undergo this kind of treatment or this type of life.

[00:09:23] And there is so there isn't a lot of discussion about how people can choose to allow their life to come to an end. Most people when they get to a point where they feel like the quality of life is gone, just have to struggle along until something happens and I you know we have patients on a regular basis who reach out to us to have conversations because we will have those conversations.

[00:09:45] We will engage in them at any stage along the way and they often tell us I every night I go to sleep and I pray that I don't wake up. And then when I wake up, I'm just really disappointed and frustrated that I have to keep doing this over and over again.

[00:10:02] And nobody gives, there's nobody gives them an option. So one of the things that we've started that we've been doing for some years now is assisting people through the legal end of life options for people who are ready to die for various reasons.

[00:10:18] They're terminally ill, they've been living with with a severe life limiting illness and their impain or their paralyzed and life has very little quality for them after careful assessment psychological assessments engaging to try to do everything we can to improve the quality of life.

[00:10:38] Sometimes people just really truly are ready to die. And if you think about it with when our pets get to that point,

[00:10:46] we do the compassionate thing and we take them and let them gently and peacefully go with dignity.

[00:10:53] People are asking for that kind of care for themselves and their family members as well at times.

[00:10:59] So we support people through medical aid in dying which is the death with dignity, it's been legal in certain states in this country for a number of years and it's been legal in California since 2016 that a person who qualifies meaning that they can make their own decisions

[00:11:15] and that they have a terminal condition with a life expectancy of less than six months can go through a process with you know with a position in a team guiding them to get medication that if they choose to take it, they can go to sleep within minutes and die within minutes or hours.

[00:11:31] Very peaceful, very gentle, very dignified, very empowering. Similarly people who don't necessarily qualify or don't live in states that do allow this in our country can go through a process called voluntarily stopping eating and drinking.

[00:11:44] Which it will become more and more sort of accepted and discussed over time because as the baby boomers age and get ill and are approaching death, I think the baby boomers are going to choose differently than their parents and the generations before them.

[00:12:03] And so we've been able to support people who have made the choice with appropriate counsel and buy in from their families and their loved ones to stop eating and drinking and with the right support in the team that we can help put in place, they can have a gentle end of life experience that unfolds over seven to ten days in most cases.

[00:12:27] So, I mean it's often said that the fiercest critics of the process have never actually experienced anything themselves and certainly in this country in parliament we had quite well known case where one ampie who'd been a famous adversary of assisted dying or assist a suicide.

[00:12:45] And we're going to call it as we call it in this country or your more elegant term over there became a real advocate for it when he had to watch his own mother where the terminal disease go through this process and literally lose their dignity, lose their independence my own mother went through a similar sort of situation.

[00:13:02] I had MSA which I think you call ALS over there and no one who's experienced the parent go through that would want that not to happen but there are many, many people and it's often religious or spirit.

[00:13:14] Religious or spiritual grounds or ethical grounds which are used or the fear of the power being abuse, which is the reason used to stop it.

[00:13:22] And I know you talk about spiritual aspects to this and psychological aspects of this I want to be able to just give us a view on on the spiritual side of how this might work especially with people with maybe with religious beliefs or families with a different sort of religious beliefs.

[00:13:38] And you're just trying to mediate a path there between various different action of interests. How does that work?

[00:13:44] Yeah so often we are trying to navigate there with families. So you know the way that I approach that is that we have a very spiritual approach to life.

[00:13:54] We're not a specific religion, not a way it's a very inclusive belief system and it infuses everything that we do in our practice.

[00:14:05] My wife is my partner in the practice she's a social worker, a spiritual counselor and we have dolas who are working closely with us and nurses.

[00:14:13] And everybody has this, tries to create a spiritual connection with the patients and families that we care for.

[00:14:21] If somebody has a religious, you know, it's strongly religious and their religion does not allow them to make decisions that would that would hasten their end of life.

[00:14:36] Then they probably won't go down this path and I would never try to convince them that they should.

[00:14:42] I don't try to convince anybody that they should do anything. I try to help allow people to know what's possible and understand all of the different options and parameters and then help them make the decisions that are most aligned for them.

[00:14:58] So if a patient has a religious opposition or any other opposition to a certain course or certain path, then we honor that.

[00:15:06] And we try to find ways to keep them as comfortable and feeling as dignified as possible having the most agency.

[00:15:14] When we have patients who want to utilize medical aid in dying and they have family members who oppose it for whatever reason,

[00:15:22] our job is to try to help find alignment there, to help the family member understand how they can be most supported given their different views.

[00:15:34] Sometimes they come around, sometimes they speak to their pastor or their rabbi or people in their community and find a way to be comfortable.

[00:15:46] Sometimes they're not and they take a bit and they're in there less engaged.

[00:15:53] The goal was to try to support the patient in experiencing the most peace and comfort and dignity.

[00:16:01] And so we advocate for the patients but recognize that sometimes their loved ones will not find a way to be supportive.

[00:16:10] And those are challenging cases because you certainly want everybody to be aligned and moving in the same direction on the same page.

[00:16:18] But we do the best that we can in those challenging circumstances to make sure that the patients need to admit.

[00:16:27] One of the big focuses for our practice is helping the families navigate whatever challenges they're facing.

[00:16:35] We realize that in our healthcare system and I would imagine in most healthcare systems, the patients are the primary focus and the families are often left out.

[00:16:44] They have huge needs, huge stress that overwhelmed and the system doesn't really have a mechanism to take care of them.

[00:16:53] We do. We focus on taking care of them where we have direct contact, they have our cell phone numbers.

[00:16:59] We're texting and emailing and meeting with and helping family members find a way to be at peace as much as possible.

[00:17:09] And we provide therapy and counseling and bereavement support because they're the ones who are going to be sticking around.

[00:17:17] After their loved one dies, the experience is going to have an impact on the loved ones for years or decades.

[00:17:24] And we believe that we can make a huge impact on the quality of life that those people will experience because of the care that they were able to bring to their loved one in those final days.

[00:17:41] Yeah, and that's interesting isn't it because we often have a funeral planning is after death, club planning.

[00:17:48] Something about myself I have after the planning but very few have three deaths planning and actually how you ease your family through the grieving process which is complex of itself, especially if you've engaged in a long, if you had a long illness is one of the challenges, isn't it?

[00:18:06] And you know some people who are grieving have this massive sense of relief when that loved one dies because actually the end of the pain and suffering.

[00:18:13] And then there's a degree of guilt and such like in the grieving having already taken place.

[00:18:18] And it's that classic thing isn't it? The more the subject becomes part of, you know, I was going to say common polons I don't mean that but it becomes a more an acceptable conversation because it's almost like hiding it ways not the each it's not the way to deal with this is it.

[00:18:34] We should be having and conversations with family I do have a living well and it's something I would recommend and I have you know happens to me after I die.

[00:18:43] And but my care was worked out and that's the way I maintain my dignity and my independence because I've made the decisions at the point where I can now something might happen.

[00:18:52] And who knows but the point is about not being frightened of the process is it right?

[00:18:58] Well, sorry a couple of comments on that and I'm impressed that you've had all this all this laid out and this you know these plans made not everyone does.

[00:19:07] I think that so you can make the best the best plans and try to anticipate as much as you can.

[00:19:17] And so things often happen in a way that that challenges that.

[00:19:22] And so I think the most important thing that you can do to preserve your dignity and your agency and have the best chance of having what we refer to as a soft landing is to make sure that the people who are going to make decisions for you who are going to speak for you when you can't speak for yourself.

[00:19:40] And so I would absolutely understand what you would want given any of the different circumstances that could occur.

[00:19:48] And and that's why we do some pretty extensive planning with people we have conversations and we go through as a long time emergency position and then how you care and hospice doctor I have such a.

[00:20:00] The range of experiences that help inform me about the things that could happen to people and that they could put them in really challenging situations.

[00:20:12] And so we're able to discuss those and identify what they would want given certain scenarios unfolding and then document it or even have those conversations with their loved ones.

[00:20:24] So that they really are clear about what they would or wouldn't want and then they need to have advocates. They need people who will advocate for them at the time things are happening because otherwise, you know, the medical system will do what the medical system does which is typically treat treat admit diagnosed.

[00:20:44] And then and then if someone, you know says no word we're done with that no more hospitalizations, no more testing.

[00:20:51] Then they basically say okay well there's nothing else to do and they kind of push them up on the hospice care where they lose a lot of the things that they had access to.

[00:21:02] And there's just huge sort of gap and that's the gap that were that we're focused on feeling.

[00:21:09] The other thing I wanted to point out is that you we always say that we're a death phobic society and no one wants to talk about death and it's such a taboo topic in my experience people really want to talk about it.

[00:21:21] They just don't have a they just don't have a mecca comfortable way to do it but I find you know when I'm when I'm out at parties or I'm out and I meet people and they find out what I do.

[00:21:33] Everybody wants to talk about it. They want to talk about the experience they had when their mom died, whether it was because it was either really you know traumatic and challenging or was really beautiful and transformational.

[00:21:47] But you know people in my experience people are are dying to talk about this because because it's it's freeing in some ways there's there's something that's kind of it's kept in and it's it's protected and then when you can release it and express these things in a way that that feels safe.

[00:22:08] I think it's really it's really comforting and and satisfying for a lot of people in my experience.

[00:22:15] Yeah, that's it's a very good source actually and I'm just making note of that.

[00:22:20] One of the things you've said which is really struck made me think about this psychology of.

[00:22:58] I think it's really important for me which is not do that or do you would do us right for your parents which is what they want and and I think you find a lot of people torn between that and actually have.

[00:23:09] And I like the idea of this having a village around around the family because sometimes it's about reminding people of helping people through that process because again there's quite a lot of guilt attached to it.

[00:23:18] I love that phrase people are dying to talk about it. That's my new I'm going to steal that.

[00:23:24] You're welcome to look how do people find out more about what you do maybe connect with you if they're interested talk more about the situation or even if they want to access your services.

[00:23:34] How do they do that?

[00:23:36] Well, we have a website it's empowered endings dot com empowered endings dot com there's a lot of information about myself my wife team that we put together the work that we do.

[00:23:48] There's an update to the website coming up in a month or two.

[00:23:54] So we have the medical practice here in San Diego we care for people throughout southern California and we're also looking to help other doctors and do those end of life do this create practices in their communities.

[00:24:08] The things that were that we've built as a medical services organization that will support practices in being established using our kind of our methods.

[00:24:23] We have an educational institute that is going to start training doing programs and trainings for people in healthcare.

[00:24:30] We find a lot of people like nurses and social workers and chaplains who are working within the system would actually like to start working outside the system because they could do it in a way that's more aligned for them and rewarding.

[00:24:43] So we're helping to guide people towards towards finding alternative careers outside of the traditional system.

[00:24:50] So they and we also have a foundation that is providing financial support and bereavement support for people who have gone through certain end of life circumstances.

[00:25:01] So there's a lot of information on the websites Facebook Instagram LinkedIn you know we're trying to really create a tribe of national or even international tribe of people who want to see end of life care improve and shift the paradigm so that we don't feel like we're taking better care of our pets than we are of our people.

[00:25:27] So we're going to do that.

[00:25:30] Thank you so much for spending time today that's absolutely fascinating. It's such a close to my heart and I remember when your details popped up on our feed that I was very interested to talk to you and it's been absolutely fascinating getting an overall picture of what's going on and also how people can get hold of you.

[00:25:47] So this country every now and then when a celebrity has a life of threatening condition got some of called Esther Ranson at the moment who's very well known in our country.

[00:25:56] And again wanting to have assisted and not being allowed to have it and we a lot of us have to travel to Switzerland to get that sort of dignity from a company called the right.

[00:26:08] It's just truly important to have to leave your home and your family and your people and you're comfort so hopefully things will improve there and you'll have those options and so yeah let's hope so.

[00:26:19] Well thank you very much it was.

[00:26:21] It's been a great time to join us. So it's Dr. Bob use Lambda and how it ends things and find the information in the show notes and thank you both for an absolute joy.

[00:26:30] Thank you take care.

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