Medical Decision Planning for Caregivers

Dr. Brittany Lamb
Dr. Brittany Lamb

Dr. Brittany Lamb talks about medical decision making for caregivers.

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Episode Extras

Published:
April 27, 2023
Note: This transcript was computer generated and might contain errors.

Brittany Lamb:  Yeah. So my name is Brittany Lamb. I'm an emergency medicine physician and so I work full-time night shifts in the, ER, but then outside of the emergency department, I hope dementia. Families, anticipate and learn about and plan for the medical decisions that they're gonna have to make on behalf of someone living with dementia. So that's what I do. I have a Facebook group and I do lots of stuff on social media. I write a blog and then I also developed a course for caregivers Yeah.

Katie Wilkinson: That's, that's awesome. And can you share a little bit about, like, how obviously, I imagine this sort of, like, spawned out of your profession? How medical decision making became important to you.

Brittany Lamb:  Yeah, so I mean, medical decision making is what I do and we do it very quickly in the emergency department and so I see people struggling with it a lot, you know, and not just families of people living with dementia. Just all of us really and what I found, you know, I've been working in the ER, for almost a decade now. And when I found is that it's really interesting to me as a person that, you know, people have they've been diagnosed with conditions, diseases, whatever, and aging also. Right, as we age, you know, we pick up medical issues, we're more at risk for different medical issues. It's very interesting to me that we're not that we're not giving people tools and access to the educational information about how those things progress and how they could potentially get worse and create complications that could affect the way that person lives on a day to day. It's just always kind of struck me as odd that we're not helping people plan for what is like, what what they're at risk for essentially. Like we know what people are.

Brittany Lamb:  Is for we know the conditions that happen as people age and when people are living with dementia, everything becomes more complicated, which is why I decided to come online and help caregivers, you know, family members of people making their decisions because it's not so straightforward. You know, when somebody is having a stroke who's living with dementia, or someone's having a heart attack, you know, all the care that we do for that person, can become way more complicated, because they have disease in their brain, whatever disease is causing their particular, dementia symptoms. So um, so it's what I do and it's what I see people struggling with and it's so hard for me to help them because they're so overwhelmed and stressed out right there in the. Er, it's not the best place to figure out what living means to you. What quality of life means to you? What kind of care you want. Do you want your life prolonged? Like, what is, aggressive care? Like these are big, you know, questions and it's, it's a bit frustrating, um, you know, to know that these things are are very likely to happen and to not be able to help people.

Brittany Lamb:  All plan for them. So that's why I came online because it was honestly causing me some moral injury, which is why I think like, burnout, you know, burnout is and and people who are health care workers. So I decided not to be quiet about it anymore. Instead of being irritated to actually try to do something to help,

Katie Wilkinson: I thank you. Yeah. I think that's super interesting and I think it's super helpful to people to have like education and resources to be able to do this and you started talking about, you know, what medical decision planning is. I don't…

Brittany Lamb: Yeah.

Katie Wilkinson: if you want to talk a little bit more about that and then also the connection between like legal medical and financial planning because they're connected.

Brittany Lamb:  Yeah.

What is medical decision planning?

Brittany Lamb:  They're really, they're all it's all interconnected. And so you know medical decision planning is is basically a term that I use essentially and what it what I tell people that they can do is you can look out, you know, what your ages, what medical problems you've been diagnosed with and then what those problems, put you at risk for things, you know, things like heart disease. And there's lots of different types of heart disease because your heart is a complex organ so it can fail in different ways. And, you know, so heart disease is a big category but then, you know, stroke and infection. There's like, you can really get down and and figure out what conditions specifically, you are our score based on your medical history and the fact that you're an aging human being, you know, because we all are, we're all aging unless and let's be passed away, you know? And so then once you once you nail down, those conditions that you're at risk for or have learned about the diseases or conditions you already have and how they can progressively get worse, you know, like heart failures cop.

Brittany Lamb:  Be these condition diabetes. Like we can't fit, we can't cure them so it's good to know like what they can do to your body going forward. Once you know those things that you're at risk for, you can start learning about how they're treated and you know, the spectrum of aggression. Okay. And how you treat them and you can start thinking about? Okay, well, right now my goals of care are this, like I have good quality of life, you know, and based on your goals now and into the future, You can kind of write down like what treatments you'd be okay with now. And then, If your life changes, your quality of life changes, depending on your values, your goals, your overall goals of care might change. And so you would pick less most people would pick classic treatment over time. Not everybody has those values, but that's very common. So that's what I, that's what medical decision planning is. It's identifying, what your goals of care are now and going into the future and then learning about the conditions, you're at risk or how those things are treated and then how those treatment options line up with different goals or care. So you can actually like write

00:05:00

Brittany Lamb:  And I teach mine, I teach my clients how to do this inside of the spreadsheet and if it's kind of nerdy but you know, it's a written plan so that when there then in the emergency department and they have this condition, they can look at the spreadsheet and say, Oh, here's the condition. You know, this is our goals of, these are our goals of care and these are the treatment options that kind of fall within those goals right now. So that's medical decision planning and the reason why it intersects with the legal and the financial system is that you know, as we age and as we develop conditions, you know,

Brittany Lamb:  There's cost associated with with caring for folks and it's it's a real thing. I mean I know money is money is an emotional topic and thinking about, you know, our our aging journey and how our life is going to change as we age or develop diseases as emotional. But we we need a plan for how we're going to pay for care, you know? And I I stress for caregivers that, I see a lot of people making sacrifices for their family members, which I think is, I understand it. I've done the same thing and my own family, we've had disease, and you step in and you step up and you sacrifice your time, you sacrifice your money because you you love the person and you have the best intentions. But if you don't create a plan, you can very easily overextend yourself and people forget, because we're like we're givers, right? You know, you, you want to help your family member, you forget that you could impact your own financial situation and your health because they're connected. If you don't have a job, you don't have benefits, you know, you spend all your retirement money trying,

There's cost associated with with caring. I see a lot of people make sacrifices for their family members—I’ve done the same thing. You sacrifice your time and your money because you love the person. But if you don't create a plan, you can very easily overextend yourself and impact your own financial situation and your health. The pillars of medical decision planning are medical, legal, financial—they all go hand in hand.

Brittany Lamb:  Help, you know, pay for someone's care like what happens to you. Um, and then the legal system, you know, intersects in there as well because, you know, people have assets. We have to plan for, we have to plan for people's estate, but then the legal system has the The entry point for the the document. So, like the advanced care planning documents so advanced directives fall, kind of within the legal system and those documents are like, a living will, or medical power of attorney. And those are different than medical order forms, which we can talk about later. But, but they kind of hold the key to those advanced care planning documents. Which is interesting to me also because attorneys are not doctors. And so, you know, how do you write an A living will? That's very specific to you. Um,

Brittany Lamb:  And and with an attorney. And so, that's something else that I've kind of struggled with. I have a bone to pick about those documents. I write it about it, on my blog, but yeah, they all go hand in hand. I mean, they're the pillars of planning, so the pillars of planning, our medical legal financial, and then, as a caregiver, there's a lot of mindset work. There. So, I hope that was not too long within.

@joingivers Medical decision planning and financial planning for your loved one: two sides of the same coin. ER physician Dr. Brittany Lamb shares why being a caregiver means being prepared for both. 💉 #Caregiving101 #Caregiver #Caregiving #Caregivers #FamilyCaregiver #CaregiversOfTiktok #CaregiverTok #FinancialPlanning #MedicalDecisions #HealthCareHeroes ♬ original sound - Givers • Caregiver Support

Katie Wilkinson: No, that was that was great. I have many follow-up questions. I was just taking some notes about things that you said and…

Brittany Lamb:  Okay.

Katie Wilkinson: maybe we can start with. You talked about goals of care and Can you share a bit more about…

Brittany Lamb:  Yeah. Yeah.

Katie Wilkinson: what that means? Like, are there sort of set goals that you might choose from like, a buffet or is this like, choose your own adventure?

What are goals of care in medical decision planning?

Brittany Lamb:  So I I teach goals of care based like three categories, three main categories. I think it's just much easier for people. There's kind of, there's kind of subcategories within there, but the three main ones are full treatment, which is You're gonna do everything, right? And that's most people's goals of that's most people's overall medical like healthcare goals of care. Um, for most of our, most of our life, which is why we don't do this work. So this is why this doesn't happen and this is it's uncomfortable. Even for healthcare professionals to talk with people about this stuff because for so long, it's implied that we want to live and we want quality of life.

Brittany Lamb:  So full treatment is the first goal care category. The second one is some but not all. And so, I mean, it's vague for a reason because there's a spectrum of of aggression of aggressive care that calls within there. The first thing that someone would kind of give up, if you will to fall into that. Category is if they did not want to have CPR anymore and CPR cardiopulmonary resuscitation is only done when someone is actively dying so they do not have a pulse and they're not breathing. So a lot of people it's very it's very reasonable for them to have it, you know, our associate and there's a whole host of issues that goes along with that, and things that people should learn about if they're interested in potentially having a DNR, putting one in place for a person that they're caring for. I write about the junior associate, all my blog also, um, and so, that's the first thing that you would kind of give up to go into some, but not all category. And then, the last goal of care category is comfort. So when someone is in that goal of care,

00:10:00

Brittany Lamb:  That it's not that we're not going to provide care. We're going to provide care. They can still be hospitalized, they can still have surgery. The intention of the care should be to provide comfort. It should not the intention of the care, should not be to prolong someone's life. First, it should be to provide comfort first if we prolong their life, okay. So you know so be it, that's fine, but those those folks you know don't want care that would intentionally prolong their life as the underlying reason for why we're doing it. So there's and there's quite a bit. There's quite a bit of pick and choose within each within each category is how you would want to receive care. So those are the main goals of care categories. It's basically, like, how aggressive do you want your medical care to be?

Katie Wilkinson: Yeah, that's helpful. I think that breaks breaks down what you mean by goals of care and how to start to build a plan. And you've talked a little bit about like a DNR advanced Directives, medical order forms. Keep share a little bit more about those. Like, what, what are they and then how do you layer in medical planning? Because you said, you know, these are sort of legal forms. So how do you then mash it up with the medical planning?

Advanced directives vs. medical order forms

Brittany Lamb: Yeah, so advanced directives are different than medical order forms. So advanced directives are done by a person in advance and they direct how they would want. Their health care to be and there's two main types of forms. One, our forms that allow you to name a person that you want to speak on your behalf if you're not able to and those names are different in a lot of different states. But one of the most common is medical power of attorney health care, power of attorney health care store, get health care, proxy.

Brittany Lamb:  Those are all names for that type of form and you can do this without an attorney. You can do it online, I think like legalzoom and and those kinds of sites you can use and then the other type of advanced directive are things like a living will or five wishes. These are documents that allow you to to write down care that you you know, care that you would be okay with or care. That you would not be okay with what I find is that the because they're oftentimes done with an attorney. They're not, they don't consider all the different conditions, a person's at risk for, so they're not super specific. And then the other thing is, it's very hard to write down, you know, when you would want certain treatments and when you wouldn't on that, on that document like saying that you never want to be intubated on a ventilator being on a machine for some people. That's that's very reasonable. Like, I understand that choice but there are conditions where you may be okay with going on it on event, and later in some situations but not in other.

Brittany Lamb:  Maybe if the underlying condition could be treated and you might be able to get back to where you were from a quality of life standpoint, you might be okay with trialing, that aggressive care because that is aggressive care mean. It's it's on, it's artificials like life support essentially. So, um, but then their conditions, where if it was unlikely that you would regain your quality of life, you might not want to go on a ventilator.

Brittany Lamb:  And so, making a blanket statement about whether or not you would want to be on a ventilator. Can be Kit, could could be a little bit dangerous, just depending on the person's goals, you know? So, um, but those are advanced directives and   medical order forms are different. So those are actual ways to direct care that are put into an order. So paramedics, nurses doctors everybody who takes care of that person. Looks at that, as an order form and follows that. So it's, when we get advanced directives, when we receive those in the hospital, like medical power of attorney, living will five wishes. Those things are up for interpretation, You know? We read them but they don't tell us what to do. They're not specific and order Form is specific and there's really only two types of medical order forms. And it also again, depends on what state you live in June. Our associate is everywhere. So gene our associate form, it only applies to win. Someone has has no pulse and is not breathing. So that's the person is actively dying. That's

Brittany Lamb:  Gcpr. And that's what a DNR tells us, whether or not a person would want that. Most of the time. People fill out, do not resuscitate order forms when they don't want CPR. So it's pretty rare that I see. One that says that they do want CPR. They're usually, you know, then the other medical order form is the pulse form, which is, it's a There is a national form now. And post used to stand for physician orders for life sustaining treatment but now they've just made it a word.

Brittany Lamb:  So it's just one word post and each state can have a version of that form if they want to like in Maryland it's most and Massachusetts in New York. I think they also use most but basically that is in order form. That's an expansion of the do not resuscitate. So it talks about other types of care. Someone would want if they're not actively dying and it depends on what what your state's form is what they're using but a lot of times they'll actually write on there, you know? Like Do you want full treatment? Do you want selective or some but not all treatment or do you want comfort treatment and, and then you can get a little bit more specific on those forms, but they're order form. So, if a paramedic comes to your house or goes to a living facility, where your person's living, they're supposed to fall form. And one of the most powerful things about them is that you can often times. They will say that a person doesn't want to be transferred to the hospital unless they're comfort needs can't be met, or if they go to the hospital they would prefer to stay out of the intensive care unit.

00:15:00

Brittany Lamb:  Very powerful language for someone like me, who had receive that form as an, ER, doctor and the emergency department that's going to help me, know what type of care is okay? Or not, and they're not any replacement for conversations, but when you bring in an advanced directive, I have to read that and interpret it. I have to talk to somebody but in order form, I don't have to talk to anybody right away like I know kind of what to do right now. So they're very powerful tools. Yeah.

Katie Wilkinson: Thanks. Yeah, that's that's a super helpful helpful overview. And I totally understand sort of the stress that you experience when you know, you're making these decisions quickly and having one or the other is going to be more useful.

Katie Wilkinson: I guess these forms. I guess I want to ask about how you actually make a medical decision plan and it sounds like these forms kind of come after you've like set goals of care and that could be incorrect. I guess. Like, if you're, if I'm a caregiver and I'm trying to make, you know, medical decision plan for my care recipient.

Brittany Lamb:  Yeah.

Katie Wilkinson: What step one, how do I start

What is step one in making a medical decision plan?

Brittany Lamb:  Yeah, so I would recommend that you

Brittany Lamb:  You compile your person's medical history, you need to get your person's Entire medical history gathered first. And I I know people get people, get frustrated, when I tell them to do this, they tell me. Oh, it's on the charts, it's all in the record but no, no, it might be, but humans do that and there's room for error, right? So you have to take ownership. If you're gonna be somebody who's going to be making medical decisions. On behalf of another person, you have to take ownership of their health, their health care, what's happened to them, what's happened to them before, what's happening to them? Now, it tells you what's gonna happen to them in the future, what's likely to happen. And so, if you don't understand their medical history, you're gonna struggle. And so I tell people Step one is, you got to compile the medical history. So, if they've been hospitalized, what's happened in them in the hospital, all the conditions that they have, you know, you would want to gather notes from the hospital from any specialist. They see like a cardiologist and neurologist. A kidney doctor and forologist. All of these different people. They

Brittany Lamb:  They write their notes in more detail, according to that disease or that condition that organ, that they take ownership of. So you want to compile all those records and you want to make this document for yourself because it helps, you know, it helps you just organize your your thoughts. So that's step one. And then the next step is really starting to learn about how those things can go sideways. And those conditions. Your person has like, How can they get worse? What's the natural progression of those diseases? And then, what conditions do they, put your person that risk for and that work, you know, if you're a dementia family caregivers, you can come to me because that's what I teach. I teach all the complications of, you know, of people who are living with different diseases that cause dementia and aging medical complications. What I do is specific for dementia family. Caregivers If you're not in that situation you can start going to your person's doctor you know to each of those doctors and saying Hey how does this get worse? What is what is serious illness look like, what what they might need to be hospital.

Brittany Lamb:  Lies for, and then, you can start learning with the treatment options are. But so compiling, their medical history is incredibly important, but then also defining goals of care. And so, if you're a person still able to make their own medical decisions and they're still able to speak and advocate for themselves. Those are conversations. You know, those are conversations that need to be had. And what I tell people to do is you know don't start asking, like Do you want to go on a ventilator? Do you want CPR? Like Do not start there. You want to start with like What does living mean to you?

Brittany Lamb:  What does quality of life mean to you? Like what are things about your day that you would? You would not be okay living in a certain way or you know, if you're in a situation where you're requiring assistance with your body like someone taking care of your body physically, you know what? What would be okay and not, okay. Like what do you want us to know? You know, one of the things my grandmother said I really stuck with me when I did when I asked her about these things because I, I want to know what she wants, because I know I'm gonna be involved helping her, she's in her early 80s. So, you know, she said to me, I'm okay with people helping take care of my body. But if I get to a point where I can't communicate that hurts, that's too cold. That's too hot. I can't say thank you. I can't like converse with this person, you know, and they can't understand what I mean and I can't understand what they mean and that's not living to me that's not quality of life. So that was really eye opening to me. And I think a lot of people have that kind of feeling so but quality of life, what someone's values of it are, you know,

00:20:00

Brittany Lamb:  Against the length of life. Like That's a big thing we have to determine so we can determine goals of care. And then we have to figure out what their medical history is and what they're at risk for those are the foundational steps before you can really, you know, create a plan and then you can, you can get more specific inside these other documents but do not resuscitate. And the pulse form are used more towards. Well, the post forms use more towards when someone Not necessarily end of life. It's just that their goals are that. They don't want us. Aggressive care and do not, resuscitate forms can be used, you know, when you turn 85 years old, you might want to consider having a two-hour cesitate form. It depends on what you're on, what your goals are, you know, but Those are the first things I would recommend.

Recommendations to caregivers who care for someone who is no longer capable of making their own medical decisions

Katie Wilkinson: Yeah, and you mentioned, you know, talking to your care, recipient your person about what what their goals are and what living means to them? What do you recommend to people who are caring for someone that's no longer capable of Sharing that or making their own medical decisions. And

Brittany Lamb: Yeah, so when somebody's lost capacity to make their own medical decisions, there's a few things one. They can't name a medical decision maker. So hopefully they've done that work and two. They can't do advanced directives like a living will or five wishes. They can't do those things anymore, because they lock they, they've lost capacity or competency, which is the permanent loss of capacity. Um, so you have to do the work on their behalf, you have to figure out what you think that they would say. And so I tell people, you know what, you think your person's goals of care would be, and we have to get kind of in their, in their mindset and their shoes and think about how they would answer questions and what their values are. But also remember that a person who is no longer able to choose, if they were able, if they did have a brain that was functioning like it used to, they would be able to learn and apply this information to their situation presently. And so you have to do that work for them, you know, people's goals of care, often change, you know, throughout their lives.

Brittany Lamb:  Just because someone isn't able to say that anymore doesn't mean that you're not that you're not able to do that on their behalf essentially.

Brittany Lamb:  So we speak as if they as they would speak. But we also know that they would be capable of learning and taking in this information and applying it and changing their mind based on what they said before, just one of the issues I find with the advanced directives like the living will you know, like I had a patient several months ago that had a living will that said that she wanted everything done essentially like she she wanted life support and she wanted, you know, heroic measures remember what exact words had said on there. But basically when I read it I was like, Oh this woman wants everything done but she was living with dementia and that document was done when she was in her 60s and she's now in her 80s and I'm talking to her husband and he's like, Oh no, you know, Oh, no, no, I'm thinking that we need to do now resuscity. I don't think she's gonna want to be in the hospital anymore. He's like, you know, how can I protect her from people like you doctor and, you know, and that's what I was concerned about because we almost put her in the hospital and I was like, Okay, well, this is what this document says. So

Brittany Lamb:  I caution people, and taking those documents at face value because we all, we all learn and grow as people as we as we age. So, Anyway.

How frequently should someone revisit their advanced directive or other legal docs?

Katie Wilkinson: Yeah, that's interesting. I have a follow-up question. I have I have a question before my next question is, How do you How frequently should someone like if you first write your advanced directive or any of these documents when you're I don't know, 60. How frequently should you be revisiting them?

Brittany Lamb:   Yeah, so anytime your medical on your health changes essentially you know, if you had a hit to your health or have a new diagnosis, it's worth considering you know, updating them and so you know and that's what I would find an attorney that really feels comfortable, having these conversations, you know, elder law, attorneys are good at this, you know, I do. There's also a, there's a service that I've recently learned about and I met the, um, Director of it and it's called Mideo M-i-d-e-o. And it's a way to do video advanced directives. And so,

Brittany Lamb:  You know, for some people who are receiving care and maybe appropriate, it's not gonna work for people who have don't have capacity so if you can't make your own medical decisions, it's not going to work. But for the care givers for people out there who are caring for someone else, when you go through this process and you start to feel very strongly about what happens to you, this would be a good service because they will reach out to you and say, Hey, we need, we need you to come back and we need to make sure this is updated and they turn this this session with you into, you know, material like physical materials. And then, there's a QR code. And so, you know, like someone like me in the, ER, I mean, I'm always gonna have my phone scan, the QR code. You can watch this video. It gives me an idea about what you would want and it also turns some some of this into paperwork as well. So it's a service I think people might want to know about us care givers and it's am I d. E o video. Um, especially for people who are, who don't have children. So, you know, we're gonna have a lot of people who are solo, we call the Solo Agers

00:25:00

Brittany Lamb:  And you want, you want your, you want your golden wishes to be respected? So that's another tool that could be used for them so but yeah, you need to update it. Anytime something happens. Yeah.

Katie Wilkinson: Cool. Yeah, that's that's helpful and we'll we'll include that link. I'm going to check out video but we'll also include that link here.

Brittany Lamb:  Yeah.

Communication skills required to be a better advocate for your LO

Katie Wilkinson: Used to we're talking about, you know, this husband who was caring for his wife. And I want to expand on that a little bit. Just you know, what kind of communication skills do, people need to have or improve to be a better advocate for their person both like with their family but also with their care team.

Brittany Lamb: Yeah. So, you know, I think that if you do work and understanding your person's medical history, I think that that will really help you communicate. But I also tell people, like, You know, your person and better than we do. You know what would be okay and not. Okay. And like you need to, you need to speak up. You know, do not be afraid of us. Like do not feel intimidated. Like ask questions, please do. Because you know, I mean, I've been in healthcare now for over a decade but I've been working in the ER exclusively promised a decade and you know we're focused more on service. You know and if sometimes it frustrates me I'm like This isn't a Wendy's. This is an Applebees. You know, I'm really sorry that you haven't gotten your warm blanket and your sandwich but like we've been running around trying to save people from dying, you know? But we do care about people.

Brittany Lamb:  We want people to be comfortable with the choices that they make. We want people to understand what is actually happening. I mean, this is it you only get one body? You know, you won't, it's your health, It's incredibly important. I mean, I would say it's it's our number one asset, right, our health, right? And so you you have to take ownership of that when you're advocating for someone else that you're speaking for them. So, um, I would say that definitely learning about the things that are going on with them will help you. Communicate better stepping up and asking questions. When things don't make sense, I think is really important. And then the other thing is recognizing that positions and nurses and those of us doing this job, we're so used to. We're, so used to keeping people alive as the default. We're so used to doing things to people, that that may not be appropriate for your person and we may not ask you.

Brittany Lamb:  And that's, it's very frustrating but we may not ask what what your person's goals and values, and preferences are in the, ER, in the hospital. There's a lack of time and so, I will be quite honest with you. All it is much, much easier to follow the standard of care. Then it is to broach from that because someone has different values and goals at that time.

Brittany Lamb:  And it requires conversation and thoughtfulness and sometimes you have to sit down and talk about this for a while. So if things are not driving with you, if you're thinking we're going in the wrong direction, you know, you got to step up and say something and I tell people too always ask like What can happen next? What are the next things that you might be calling me about? What are the things that you could see happening coming forward? Because then you can, you know, you can start thinking about how okay what are we gonna do with those things happen, while we're treating whatever is going on? So I just, I just want people to feel comfortable speaking out and, and making it known that there are certain goals. And, and you know what, quality of life and living means that person. I mean, I hope that I hope that that's helpful on.

Katie Wilkinson: Yeah, I think something that like, I've experienced in in healthcare and not in the, ER, so this might be a slightly different scenario, but I'm fairly assertive and pretty confident, you know? And, and still I felt myself being nervous to ask my doctor for something or to run a test or this kind of thing. Because I've been like shot down in the past by that doctor or another one, not entirely for my question is but just like is maybe it's a bit around confidence for people and like how can people practice this or how can they build build these skills to be more confident? It both in decision-making and advocacy.

How to build confidence in medical decision-making and advocacy

Brittany Lamb: Yeah.

00:30:00

Brittany Lamb:  Yeah, I think, I mean, I don't know that I'm, I don't know that I'm the best person to answer that question, to be honest with you. But like, I can tell you that, you know, in medicine, we do This may sound strange, but like, we, we visualize going through the process of doing something to someone like a procedure, you know, or, you know, the steps in care. And so we, we do a lot of like, simulation and visualization and so like, I know that visualization is a powerful technique for folks. And so I do often times recommend to my patients and their families that you know, especially when people I see a lot of patients that come into the emergency department and they have something going on. I cannot diagnose I recognize that there is a problem, but it's not life threatening, it's not surgical. It's not a bad infection. It doesn't mean they don't need to be admitted to the hospital, but something is not right? And I tell folks like, Hey, I want you to document, what's going on like, write down your thoughts, organize your thoughts, because I think that a lot of times when we go into healthcare settings, we

Brittany Lamb:  There's so many questions that we get asked, right? You're like constantly being asked all these questions, it can easily derail you from like why you actually came there. And so I think one of the things that you can do is like document, what's been going on? Actually maybe write it down, you know, like on a physical piece of paper or in your phone or something. And like, this is what's been happening. This is the timeline. These are my questions. This is, these are the things I actually want to ask you about are the things I'm like, Should we do this test? Should I see this? Other doctor like Let's talk about these things because it can help it can help you take back some of the control of the conversation. And I think it's frustrating because you know, there's a, there's a lack of time and so what they're trying to get done and what you're trying to get done, they oftentimes compete against each other which is very frustrating. But that's one thing that I think kind of visualizing like how the conversation is gonna go and already having compiled like that. The, when we ask people questions, we ask them for a reason. Like, I'm always

Brittany Lamb:  Asking people to kind of the same questions and they get so frustrated with me and I'm like, I promise, I'm asking you these questions because it helps me figure out what might be happening to you. Um, but yeah, I think that might be something that's helpful. Just kind of just kind of organizing your thoughts and having a document to go back to

Katie Wilkinson: Yeah, I think that's great. You said, you weren't the right person to answer that question, but I think what you just explained is probably very helpful for people when they enter, what can be like, kind of an overwhelming or unfamiliar, you know, environment?

Katie Wilkinson:  We've talked about, you know, medical decision planning and how to do this for your care recipient. I'm hoping, you can just share a little bit about like Why might someone do this and what benefits are there to a caregiver to have a medical decision plan in place?

What are some of the benefits caregivers can experience by taking advantage of planning?

Brittany Lamb: Yeah. So you know, being a caregiver, I don't know what disease or what condition or why people are caregiver. So, you know, whatever's going on and why even ask a step into this role like there's That is a huge task that gets huge responsibility. And what I find is that caregivers, they wear a lot of hats, like they do a lot of things like they're cooking. They're financial person. They're the, they're the driver, they're the activities coordinator. They're the, you know, therapist, you know, and there's so many things that you wind up having to do for someone that you're caring for. It just depends on your situation. There's a lot of, there's a lot of stress and there's a lot of overwhelm with just meeting those tasks. and what I, what I find is that

Brittany Lamb:  If people don't do this type of work and thinking about their person's medical future, it's another significant stressor because, you know, you have a medical event that happens and it can derail all of those things that you've been doing on a day to day to make your life work, and make your person's life work and function, you know, seamlessly and so and I often times find you that people don't realize that they're caring around stress. I'm not knowing what's gonna happen to their person, you know, especially if they're persons in this living in a facility. It's like when I get this phone call, What is this phone call mean and What am I going to have to do? What decisions am I gonna have to make? And, and so, like, this is just a way back to a way to take back control over your life, You know, a little bit and, and help advocate for your person. If you do medical decision planning, you can make sure it's highly. It's highly more likely that your person will receive the type of care that they would want, which is gonna make you feel better. It's gonna make you live with

Brittany Lamb:  Us guilt and regret. Because I see that all the time in the emergency department. You know, they say that we don't have continuity of care in the, ER, to tell you that's nonsense. I see the same patient sometimes over and over again. I've had multiple families. I walk in the room, like, Oh, Doctor Lamb You're here. I'm like, Oh, I don't really remember you but great, you know. And so it's it's just a way to take back control and it gives you peace of mind because this this piece you know, medical decision planning. You do this work and Yeah you you check in on it but like you really only have to do this one time like for real. Like in invest your time, you know, over the course of, I would say, depending on how complicated someone's medical history is when I work with care, givers inside of my program. You know, if you do, if you can spend time on this every week, you can have it done in like two months and not, you know, not do it all all week long, you know, like an hour or two a week, so um,

00:35:00

Brittany Lamb:  I just think that having a plan there for you to fall back on it just it's another tool for you, you know, and it's not a legal document, right? Medical decision planning is your own plan, on behalf of your person? It's to give you something to go to. So it's you don't have to turn it in. It's not gonna be inspected. You can change your mind, you know, so so yeah, I just think people don't realize and they make, they make decisions in crisis mode and I see it and it, it hurts it, like Hurts me to see, people have to do this. It's and it. That's what it's so frustrating to me because it doesn't have to be this way. It just doesn't. And now that we have access to the Internet and we can, you know, we can create online education for people, we can give people what they need to know ahead of these situations so they can make informed choices. Because, you know, you all know what's best for your person, you know, I'm just met you, I'm just trying to help you guide you through this process.

Brittany Lamb:  And same thing in the hospital but it's just not the best place to make decisions and that's where the decisions are being made right now. Yeah.

Katie Wilkinson: Yeah I think just taking one thing off the plate or freeing up some space to do all the other things that you just listed and…

Brittany Lamb:  Exactly.

Katie Wilkinson: you have a program to help people with medical decision planning, can you tell us a little bit more about that or where people can find it if they're interested in using your program?

Brittany Lamb:  Yeah.

Brittany Lamb:  Yeah, if you're on, if you're someone who is caring for or involved in caring for, you know, maybe they don't live with you but and they may live across the country even. But if you're involved in advocating and making medical decisions for someone who's living with dementia, any type of disease that's causing dementia and your person's not at end of life, so, not on hospice. You know? Um, you you probably benefit from taking my program and you can find it at my website. It's it's www.blam

Brittany Lamb:  IBM medical decision maker for someone living with dementia. It teaches you, how to make a medical decision plan for your person. And then what I, what, I, why I built it The way I did is because I broke up all the conditions that are likely to happen and, and created documents for each of them. So, that there's like, questions that you can ask when you're in this situation. And if you're in those situations, you can watch my video to like Read jog, your memory about, you know, what you, what, what's going on and what you need to ask, and what the what you might choose to do. So, um, I think it's highly valuable obviously I'm biased but it's basically, it's basically

Brittany Lamb:  If you were talking to a doctor and everything that we want you to know before you come and talk to us, that's that's what it is, you know. And it's it's in total, it's like over eight hours of content, you know. And I and I deliver it over eight weeks and then once you get it you have access to all of it. But you know, there's no way if your person's, you know, receiving primary care services, specialty services, even palliative, care services, that someone's gonna spend eight hours of time talking to an educating you. Um, and so this is for people who are, who are, who are planners, who want to take back control and they want it, they want to know that they are making decisions for their person living with dementia from from a place where they feel like their person would choose those things and so they can have peace of mind. I mean that an offload, this stress. Like that's that's my that's what I want for. People is to just get rid of this piece of this stress of things, you know? And I know it's still going to be emotional and still going to be hard when something happens to your

Brittany Lamb:  But but I'm hoping that this is going to significantly help people. So yeah.

Katie Wilkinson: yeah, that's I mean that's amazing what you just described even just like the education and content around specific conditions and what this might mean, Is when you were talking earlier in our conversation about like you know, what's your primary condition, do they have something else? Like all these nuances of a person's Specific condition or conditions, You know, even just that education feels almost overwhelming to, you know,…

00:40:00

Brittany Lamb:  Yeah.

Katie Wilkinson: figure out like what, you know this information and what papers we need and that well, this what? You've just described

Katie Wilkinson:  You said your bias but as a unbiased person, this does sound like an immense amount of value to a caregiver. We'll be sure to include the link to website. Also, and To round out our conversation. We love to ask our guests, their top tip for caregivers. I'd love to sort of specify the question for you. And you know, what is your top tip for navigating, the healthcare system as a family caregiver.

Brittany Lamb: Here. Yeah, so I mean I mean, I think I've touched on it, you know, it's that I want people to realize that you're the person's advocate and you are allowed to speak for them and you are allowed to advocate for them. And so I want you to ask questions and I'm I want you to to feel good after you've loved a visit. So you know what we've talked about compile, what you're trying to get out of that visit like write down what your goal is. When you go into that office like what questions do you need to have asked and answered in order to make that valuable visit for you you know. And and also be willing to to step up and say Like is this is this following what our goals are? You know, are we doing the right thing here? You know, because we we put our heads down as doctors and specialists like, especially specialist cardiologist. I'll just, you know, they're just we're just wired in a certain way. We put our heads down and we go go.

Brittany Lamb:  We do do and just because we can do things doesn't, doesn't necessarily mean, we should. And so you all know what's best you really do. And so you, you know, step into that power. Um, you know, it's up into it because we need you to help us. We really do, you know.

Brittany Lamb:  The other thing else I'll say is that I I do want to plug another podcast for caregivers. It's a I'm like, there's lots of tips, there's so many tips, it's hard for me, but um, there's a lot of people have issues around boundary setting and the mindset piece of being a caregiver. And so, there is a podcast by Katie Coughlin it's from one caregiver to another and it's like, it's, it's about boundary setting. Um, and so I think people should check out that podcast if you're having any struggles there, because some of why I think we have trouble advocating for ourselves in the healthcare system is is because of that and there's like mindset, work and boundary kind of work that we need to. Or so that's that's my tip. Those are my tips.

Katie Wilkinson: I love it. I love those tips. We will look up that podcast and also share that link. So we just get everyone all the resources and thank you so much for your time and sharing so much information. And again, we'll be sure to link to you so people can come and and use your support to make a medical decision plan.

Brittany Lamb:  Yeah, I'm happy. I'm happy to if anyone has any questions you can find my I think my email address is on my website. You can always shoot me an email and then you know join join my email list or start reading my blog, you know, anybody can read the blog. So it everything that I do is geared is slanted and geared towards dementia families, but there's a lot of stuff on there that I think a lot of care givers would benefit from so, but reach out to me, if you need help, I'm here. I'm here for it.