This is the third episode for Social Health, Caring for Others.

My guest is Margaret Fitzpatrick, MS, RN, CRNA, and author of "Getting the Best Care: Rescue your loved one from the healthcare conveyor belt"

Margaret Fitzpatrick has been a critical care nurse and a nurse anesthetist with her master’s degree in anesthesia for over 20 years. An award-winning author, she is a leader in the movement to help patients and families to set individual healthcare goals that reflect their values for the last chapter of their lives. She is dedicated to helping people make better decisions, have less stress and to prevent suffering for themselves and for the loved ones. Her latest book, Getting the Best Care will help you to avoid unnecessary tests and procedures that can cause harmful complications for older adults.

You can find her at -

Instagram: @Maragaretfitzpatrick16

YouTube: https://bit.ly/MargaretRN  Margaret Fitzpatrick, RN, APN

Music: “Care for Others” by Lisette Kelly (guitar), Nadine Kelly (percussion), Tim Buell (piano and percussion), Produced by Tim Buell. Podcast Theme Music by Nadine Kelly and Tim Buell.

Margaret Fitzpatrick 0:02

What I tell people is that we're not having a conversation about death and dying. We're having a conversation about living and there's a lot of living up to the point of death and dying. So you don't have to think about it as how do you want to die? Think about it as how do you want to live up until then?

NPK 0:26

Hi, it's Dr. Nadine and welcome to another episode of Health Raisers. Today, we are continuing our conversations for social health, caring for others. Now let's turn to caring for our loved ones as they navigate the health care system. My guest is Margaret Fitzpatrick, critical care nurse and nurse anesthetist with over 20 years of experience. She is the author of, "Getting the Best Care. She wrote this book to help us as she puts it, to rescue our loved ones from the health care conveyor belt, a very timely book for these challenging times. And don't forget to share with anyone you think needs this message. Please enjoy.

Margaret, welcome to the show. I would love to get started with what you think in all of your experience, with your work and with your family members that you've provided so well in the book, what does the phrase best care mean, to you?

Margaret Fitzpatrick 1:32

Well, thank you, Nadine, I really appreciate the opportunity to speak with you and your listeners. For me, getting the best care is something that is very individual, it's not something that you can use a checklist and say, if you have these things, then that means you're getting the best care. Because the best care for me might be very different than what it is for you. And to me, it's something that needs to be based on each person's individual goals for their life, and the values that they have. So I can't say that in terms of health care, if I look at your experience, I can't say well, you didn't get the best. I mean, obviously, there are drastic and outlying situations where anyone could identify it as being not the best care. But in terms of my book, and the way that I'm viewing things, especially as people age, getting the best care is very individual and based on what their individual needs are, and how they see themselves and how they want to interact with the healthcare system.

NPK 2:46

It's such a timely book, because we are discussing so much in our culture now what it means to age well, the idea of the lifespan versus health span. Like you said, for one person, a life well lived may have one set of values and beliefs, another person may have very different values and beliefs. Some want to extend life as much as possible no matter what I'm reading an interesting article. As a matter of fact, just because we got before we got on this interview about someone who's saying that he really wants his life to be 75 years. And that's enough. It was so interesting, because he's talking more about quality versus quantity. The problem becomes, though, in the healthcare system, right, we have done such a wonderful job at extending life. And maybe if you look at it in a different way, postponing death, these conversations become more important to have with loved ones before we get to that moment where it's very fraught and emotions are high. And opinions differ, especially for talking about siblings and how to handle critical decision making medical procedures to have or not to have. Why did you decide to write the book? What was the problem that you can feel compelled to solve by writing your book?

Margaret Fitzpatrick 4:25

Well, for over 25 years, I've been a critical care nurse and that means working in intensive care units. I was a trauma nurse specialist in the emergency room at a large Trauma Center. And then I went to school and got a master's degree in anesthesia. And so that brought me into the operating room. But another part of that was being responsible for responding to all of the emergency codes in the hospital. So you know, people see on TV, they announced code blue, and everyone goes running. And so I was part of that team. And I would be responsible for the airway in terms of that means if the person isn't breathing and putting in a breathing tube, and, and frequently helping to manage that critical situation. So after doing that, for a number of years, it became clear to me that, in most cases, we're not really helping that person that we're responding to that emergency code. And if the goal is that person being discharged from the hospital, in a reasonable state of health, or with a reasonable expectation of being able to return to their life, I was not seeing that as being really what happened. Obviously, there are situations where, you know, it's a younger person, or someone who doesn't have multiple medical problems, and had, for whatever reason, an emergency where their heart or their breathing wasn't sustaining life, and we come in and intervene, turn that situation around, and after being in the hospital, they recover. But in reality, the vast majority of the codes that I was responding to, was for people of advanced age. And when I say that, again, that can be different for different people. Somebody at 70, may not seem to be very old. And, and another person at 70, may have multiple medical problems and is physiologically very old. So what I was seeing was people over 70, who had multiple medical problems, diabetes, kidney failure, heart failure, things that had been causing them medical problems and health problems and limiting their living for a number of years. And so when that person has a code situation in the hospital, we can get the heart rate, we can we can get the heart started, again, we have multiple tools at our disposal from drugs to machines and everything else, and I can put in the breathing tube and manage that. But having that person wake up and return to their life in any degree that would resemble their life prior is very small, statistically. It you know, I think statistically, we're at about a 20% survival rate, if you do, you know, CPR, and you have the defibrillator, and all of that. But for someone who is over the age of 70, with multiple medical problems, the likelihood that they will leave the hospital and, you know, have rehab and return to a life is less than 5%. It's really like 1%, it is negligible, the people that will return to life. And so what was happening was, we would code that person put them on the breathing machine, they're in the ICU. Later that day, or that week, they're going to code again, and we'll do it again. And this can happen three, four times before we just can't get the heart restarted. And so that's what formally ends their life. But we have used a lot of resources in doing that. And we have not helped that person or that family. I mean, think of that going through that you're sitting at your, you know, mother or father's bedside, and you're going through 1,2,3 code situations, and all this up and down. And all they have them back and we haven't helped anybody.

NPK 9:13

So my question is, you in your work, have seen this firsthand. And then you have patients, family members who don't have this internal, you know, peek behind the curtain perspective. So how do you see bridging that gap?

Margaret Fitzpatrick 9:31

Too often, again, this experience in the hospital where we're asking family members in the midst of a hurricane, do you want an umbrella? So their loved one is maybe teetering on the edge of having their heart failing or their breathing that sustaining life? And everyone's upset, as you said, and we're asking them, I've actually heard physicians say, do you want us to bring him back? And? I? I just want to pass out on the floor? Because that's not the question, who's gonna say no, what they're hearing us say is do you want him to live? Or do you want him to die?

Oh, God.

And that's not the question. And that's why this discussion needs to happen years earlier. The disconnect is that we're not even de aling it with it when the person comes into the hospital. But coming into the hospital, it's too late, they're coming in for a problem, we need to deal with this when, you've been diagnosed with kidney failure. We need to let you know your kidneys have failed, you're going to start dialysis if you so choose. Likely you, that's about a five year process for people. Now, granted, there are people who are on dialysis for 10 years. But in general, if you take the whole, you know, scheme of things, living on dialysis, you have about a five year life expectancy. What do you want us to do as more problems come up, let me talk to you about that. If you now develop heart failure, you know, and have those kinds of conversations letting people know that you're not going to get better, you know, if your kidneys fail, they're failed. Dialysis, we can do that. And I am all for people using whatever means they want to, to live as long as they possibly want to. But they need to do it with the knowledge that it comes at a price. And there's a lot of suffering that can come with it.

When you say we, who's we? Who's on the team? Who needs to be having that discussion?

Everybody. Everyone who deals with someone, as a patient needs to have that conversation. But families also need to have it they just don't realize that they need to have it, you know, oh, you know, Mom, this is a pretty serious diagnosis, whatever it is, it seems like it's causing more and more problems. Where, how far do you want to go with this? We will support you in this. But they're recommending that you have a CAT scan now to investigate, whatever. Do you want to do that? Or do we want to ask, how will they change the treatment that I'm getting? Because we have a million tests, you know, as you know, we can test all day long all night long. Many times those tests are not going to change the course of treatment. Many times it's just we're getting information because we have the ability to get information. And we're just backing up a diagnosis that we already know, you know, so, which is fine if people want to do that, but it comes at a financial costs. And it comes at another cost to people especially as they age, or they become just persistent patients. And they're viewing themselves differently, as opposed to viewing themselves as active, relevant actors in their lives, they are now passive to what is being recommended to them.

That's a really, really good subtle point. So not only Well, two things I heard, the first thing is that these tests and new diagnoses do become a domino effect type series of events, because so you get a new diagnosis from the previous diagnosis because you went down the lane of doing another test. And it's like, okay, well, what am I going to do with that? And what's the next step? And usually it's to do something, whether it's to take medication, or have a surgery, an outpatient or inpatient procedure. So the morbidity starts to accumulate, the more you go down this road, and then something you said really resonated with me were something we don't think about where the shift the mental and emotional toll toll, the shift in how the person the patient, the patient, the your loved one begins to see themselves. And if they become these passive people who are just planning, how to take their medication during the day and how to eat around taking the medic medication, when can they go to sleep? When can they drink this, when they can't drink? When can they walk, when can't they walk? That's got to be a very challenging, and I don't know if debilitating is the right way to say might be too dramatic. I can't think of another way to put it but I don't see how that would make you feel the most alive.

Right, are the most empowered, you know.

Right with a sense of purpose to if it's, I'm going to the doctor on this day, I need a ride there. And it's going to take this many hours. And when I come back, I mean, your life is just consumed with one appointment after another.

And right specialist after specialist after specialist. It's interesting, because something that I recommend to people is to say, because it's hard to know, where do you draw the line, you know, it just, it just keeps going. And it that's why having a clear idea of how you want to live your life in the time of life that you are, and always be seeing things through that lens, because obviously, the choices that you make when you're, you know, 35, and you have four small children are going to be very different than when you're 85. And your values are going to be different. How you want your life to be is going to be different. It's not that you're giving up at any point, it's not that you value your life less, it's that you have an understanding of where you are. And so we need to think about these things. Before we get to that point. Everyone talks about it, and kind of jumping around. But people seem to hear this through the lens of you know, when do I want the plug pulled? You know? As if there's a moment where there's a yes or no. And, and there's not. Very, very rarely in people's lives is that how it goes. Much more common is that process of as we age, different things happen. And you know, we get high blood pressure, okay, well, we want to treat the high blood pressure to avoid a stroke and heart attack and disabilities that can come from that. Um, but that's not something that is one and done, you know, we we get the medication, and we have to be aware of how this is affecting our lives. And is it effective? And what can we do about that? And then maybe there's another diagnosis, very common now we're dealing with seems so many people have diabetes. So now I get that diagnosis, and I'm adding more medication. Okay, that's reasonable, because we want to control that. But you know, you can see how and then, you know, now you're in your 70s. And maybe you have a heart attack, you know, and there's more things happening. So there's not a, there's not a certain point where we're making this decision. We're gathering things as we go. But there are certain diagnoses that are important to look at and start making clear decisions and making them clear to your family and to your physicians. And those can include, well, like I talked about in the book, I have someone I talked about Mr. Johnson, I call him who had lung cancer, that was advanced lung cancer. And, you know, he was a man, I can see him, very dignified man with loving family and comes to the hospital, knowing he had and he also had, I don't know if he had diabetes. I know that he had heart disease, you know, he had more problems. But the stage four lung cancer was a was enough of a problem. Yes. So he comes to the hospital with difficulty breathing, something to be expected and advanced lung cancer ends up in the ICU. The difficulty breathing turns into does he need to be on the ventilator? So now I'm putting him on the ventilator? Well, there's no happy ending to that story. You know, he has advanced lung cancer, he's on a ventilator, we're not going to be able to get him off the ventilator. And he he later did code more than once and and did die. He didn't leave the hospital. But his loving family was stuck in this situation of well, he's having difficulty breathing, am I going to say don't put him on the ventilator? You know, this is a problem. This needed to be discussed when the when the lung cancer was diagnosed. And and at intervals as you're getting treatment, to say, you know, you're at stage four, we're going to do as much as you want us to do. But the reality is you're going to have these symptoms that are going to get worse. Do you want to be on a ventilator? Let's talk to your family. And then you talk about palliative care and hospice you know in those situations.

You phrase it very well, I mean, I'm a very visual person. And the way you phrased it on your in your book is rescue your loved one from the healthcare conveyor belt. And that's what it sounds like you're describing here with that example with Mr. Johnson. But then I'm putting myself in a family member's place, like in a really practical sense. Who's going to the, with him to his various physicians appointments? Who's asking those difficult questions, who's asking for options? Because what if the doctors saying, giving specifics that this is usually how lung cancer goes? Or, you know, whatever? And would that doctor have said, we may be faced with this situation? And you have this option? And you have this option? Well, what if? What if we do advance to the ventilator, then? What what could we do alternatively, and so that everyone is on the same page and able to ask all of the questions and paint out different scenarios? How can a family member and the person... another thing I really liked about your book, you talked about this with your mom a lot, is that the patient should also feel empowered, not just a passive, kind of like they're almost watching a play of their own life, and they're not involved? How can we put everyone on the same page, so everyone understands and talks about different things to think about as much as possible? Like you can't predict everything, but at least as much as possible, so that you don't think when you get to the hospital? And they say, Well, we've got to put him on the ventilator. Now he can't breathe. My reaction as a daughter would be well, I don't want him to suffocate. Of course, we have to put him on a ventilator. Yeah, but what could have been a different option? How could I have said to myself, Well, dad is going to be comfortable, when if they don't put them on the ventilator, but give him I don't know, morphine, so that he can relax?

Well, I think for Mr. Johnson, where we failed him was that his diagnosis and every appointment after that, because recommending hospice to somebody like Mr. Johnson, is almost a no brainer, because you know, that this man in his late 70s, with his multiple medical problems, and stage four lung cancer is not going to survive this. Every physician knows that this is not going to be if you count a win, meaning that you're going to defeat this cancer, and he's going to leave live another 10 years, it's not going to happen. And so we need to talk to the patient. And let the patient know, because as we age, I, most people in my experience, get get wisdom about life, they have less life ahead of them than they have behind them. And they don't want to suffer and they don't want to die in the hospital. But that needs to be something that they feel free to share, not only with their doctor, but with their family. Because large loving families can be a blessing and a curse in these times, you know, because the daughter, the sister comes in from Washington and the brother comes up from Alabama. And you know, and everyone is very emotional. Those things needed to be kind of laid out in the months and years ahead of time to say, I'm letting you know, this is what I want. I don't want to go into the hospital. And if you have a service like hospice, and if it's working well, because it can meet everybody to be doing their job well. Um, you will have a nurse who's coming to visit you once a week who's monitoring your symptoms and seeing you okay, you're having some trouble breathing, maybe get some oxygen, and then start different medications. But also to let you know that you're going to be feeling things that are not comfortable, possibly. If you don't want to, because we can give you a lot of different things. You may not be awake. So you get to make these choices. Is it more important for you to be awake and interacting with your family? Or is it more important to you to be comfortable, which means that you might be sleeping a lot. You know, you don't necessarily need to be suffering. We can give you medication but it might make you sleep more and that may change as your disease you know goes on in even in the week before you die you may decide okay, I've been awake. enough, and now I need to have more sleep. And, you know, it just needs to be a constant, evolving situation. And I think if people are prepared ahead of time, the family will be able to deal with it. Well, unfortunately, because we are so driven by hospitals and doctors, and that whole system that's very familiar to us. We look to that system to start the conversations. And it's just not going to happen. It's just not, it's just not built that way. There are obviously fantastic physicians who are very in tune with it. But they're few and far between, in my experience.

So this is patient advocacy, this is advocating for yourself. And another thing I'm hearing in what you're talking about, and I kind of where I want to segue into hearing more about your journey with your mom, is what you what I think of as a result of having these conversations, which is to, as you say, have less duress as you protect your loved one from suffering. So you're not only protecting your loved one from suffering, you're also protecting yourself and your family members from suffering. And perhaps I would even dare to surmise, perhaps, you're modeling for gener... for other generations. So if I'm in this position, and I'm having these conversations with my mom, and we're normalizing being able to have really difficult conversations, then my daughters are going to see this, and then we can more easily have difficult conversations going forward. So how did your mom have the wherewithal to have these difficult conversations with you so that you know what I was reading as you describe the various scenarios when you would take her... You didn't have to suffer yourself emotionally, mentally, because this is your mom to go, I have to make a guess as to what mom wants, and I don't want to lose my mom. So I'm going to your all the all the other things that go along with that. So how did that happen for you?

Yeah, that's very interesting, Nadine. My mother was an extraordinary person in a lot of different ways. Just having 16 children was a pretty extraordinary. Um, and, but also, she had a lot of friends throughout her life. And a close group of women that she would that they raised their children at the same time, they went to the same church, you know, they knew each other for 40, 50, 60 years, some of them and she saw, you know, as you age, and she lived to be 99 years old, all of those people died, including my father died nine years before my mother did. And so she's she visited her friends in the hospital, she visited her friends in nursing homes, she was very aware, she was obviously in very good health for her whole life really. Um, but she was very aware of things that happen and how people get kind of put on a conveyor belt, and having more and more tests and more and more interventions. And so, she, she was very clear that she never, she always wanted to live at home. And, and that she didn't, she wanted to stay out of the hospital. So certain things happen that prevent that, like breaking a hip, you know, in her 90s, she's going to the hospital. Um, but my experience in the hospital, especially with older people, told me that we needed to be with her and having a large family made it easier. So someone needed to be with her all the time, to keep her from being confused and and getting delirium. And I knew to say no to a catheter, because I didn't want her to have a urinary tract infection. And those things you know, she wouldn't have known to say no to, but I knew how to avoid certain complications. But also I knew that when they recommend now you go for rehab, you know, which is essentially in a nursing home I knew that her first priority was never to be in a nursing home. And we had made her that promise. And so I, we explored, okay, she needs to go home with rehab at home, you know, and making those arrangements. So that started. I'm sorry, I'm doing this kind of out of order. But the conversation really started when she was diagnosed with atrial fibrillation, which is a common heart arrhythmia that people get as they age. And, and making the decision whether or not to take a blood thinner, you know, which is pretty standard. And I explained to her, Okay, well, this is a standard operating procedure. But at that time, the medication that she would have had, would have required regular blood testing, you know, regular getting her her blood drawn to see whether her level was too high or too low. And she said, Oh, no, absolutely not. I'm not going to be going in for blood tests. And so that meant no thank you to that medication. Um, because she kind of knew instinctively, I'm going to get a blood test, something's going to be wrong. And now I'm going to end up in the emergency room, you know, which I saw all the time, when I was an ER nurse, people coming in on that medication who were given, you know, getting emergent calls from their physician saying go to the emergency room, your levels are way too high, and you're at risk for bleeding. And now they're in the hospital. And then very frequently, they do get that delirium, now they're confused, do they fall in the hospital, you know, when you just get on that conveyor belt of problems and solutions, and

...then all of the specialists coming in, because that's what happens, you know, so Oh, let's get a GI consultant, let's get you know, an ortho to come in and consult on this, oh, we need ID. We need infectious diseases. And then it just accumulates. And unfortunately, they're not... They don't have time to, it's not like the whole team can How would you coordinate that the whole team for your particular patient to come together and sit down and have a discussion?

There isn't time there. I mean, it right. I mean, honestly, as advanced as we are, there is not time to give good care in the hospital. I mean, it's, it's sad, and but any, it seems like anyone who's gone through a situation with a loved one who's been ill, or had an accident or something like that. They're dissatisfied at the end, you know, when you go through what was your experience, they're very often very dissatisfied. And so if it's not going to improve, if you're in your 90s, and going to the hospital isn't going to improve your your life. Maybe don't go to the hospital, now you break a hip going to the hospital is going to improve your life, because that's the only way to get that hip fix. But you need to get out in my experience, you need to get out as soon as possible, and into an environment that's more familiar to you. And, and really assess because meeting so many people, I've done so many surgeries, given the anesthesia for people who are in their 80s or 90s, who break a hip who have advanced dementia. And, obviously, you want to fix that hip because it's painful. So you don't want this person in pain. But do they need to stay in the hospital after that, you know, for an extended period of time and then go into rehab when their major problem is this advanced dementia, which is going to end their life, you know? We need to look at things in a more that you know, it goes back to that individual who is this individual? Where is this individual in her life? And how can we do things that are going to help this person live the best possible life right now? Very different if this person is 30, you know, then if this person is 90.

I have a couple of observations here? Well, one observation, one question. So one of the observations is that there are when we talk about individuality, we can actually even go a step further because people age differently. A 75 year old, this 75 year old, as you mentioned before, with is not necessarily going to look like the next 75 year old because they're different definitions of aging, whether it's cellular, biological aging, social aging, psychological aging. So we experience life as different like, even though I look a lot like my mom, and even though there are, there are genetics evolve their epigenetic factors, there's environment, there's different social circumstances, so many things that make one life very different than the other. That's kind of the first observation. So no judgment on, you know, if someone is thinks that or doesn't just think that 80 year old person is so vibrant, that you know that there's so many factors that may make that person more vibrant, versus another 80 year old, where there are so many comorbidities that they're really living and painful, life full of chronic debilitating diseases, and all of the things that go along with that the business so the doctors, we talked about the medications, the side effects of the medications, then which require the next medication. The other thing that I wonder is a person in the hospital to kind of take us back where we talk about all the different, you know, cooks in the kitchen coming in and and surveying the patient. Can the hospitalist be a good bridge? Who could be the bridge for a patient to say, or the family to say? Is there a point person who could synthesize this information for me? Isn't that the hospitalist's role?

Sure. You know, it's it's a problem because and if we're talking still about people of advanced age, people want their own doctor. And a hospitalist is a new face now, and, and some obviously, it's like everything, some are very, very good at that, and very good at making that connection with the family, very good at sharing their experience and helping figure out what does this family want and coordinating things? But honestly, you know, again, you're talking about someone who is very busy, and which is why I encourage people to do this work in the family before they come into the hospital. And have an understanding when you get the diagnosis of Alzheimer's, what that means. And, and maybe now, okay, so mom has is on dialysis. Now we know she has Alzheimer's and it's, you know, progressing. Have the conversation with the doctor about maybe we don't need to go into the hospital if she has chest pain, not that we're making the decision that her life needs to end. But making the decision that a person with Alzheimer's going into the hospital is a terrifying situation. They don't know what's going on. It's very difficult to maintain their cognitive stability.

Let alone somebody who doesn't have dementia. I particularly think, even though if I were to go into the hospital right now, I'd be scared. I mean, there is there's uncertainty, you don't know you're not in control of yourself. And, you know, people kind of underestimate the hospital environment too, all those artificial fluorescent lights, you're being poked and prodded. You can't sleep continuously, because people come in to check, you know, your vital signs in the middle of the night. So they're so imagine even for a person who doesn't have dementia, how all of that could be just extremely challenging, let alone you're already confused chronically.

Yeah. And, and even I mean, I talked about in the book that after the age of 70, and again, it's very it's it's variable, it can happen much younger. Delirium is something that is extremely common when people go into the hospital as they age, and it's very under diagnosed. Because people think of delirium as the person kind of being wild. Old and disoriented and throwing things may be fighting, but more commonly it's a quiet delirium where they're withdrawing. And people aren't aware that they're having this disconnect. And it can be something, especially for someone who has the beginnings of dementia or other problems, where they don't recover their cognitive function after they go home. So that's why as people age going into the hospital needs to be a real calculus, is this going to the risk benefit? Where's the needle gonna fall? Obviously, as I say, you know, the joke I made to my mother was, you'll never have to go to the hospital again, unless you break a bone or have another baby. Because neither of those things, I want to handle it all. But it was true, because I knew that she would be so much worse off going into the hospital or staying in the hospital after her diagnosis of atrial fibrillation, which, of course they were everyone was horrified. What do you mean, you're going home and say, Well, we're gonna see your doctor, you know, this is not going to help her to be here. Now, it's going back to the thing of it being individual, I also talked in the book about my brother, who had advanced multiple sclerosis. And he, if you saw him, if you walked into his room, he lived in a continuing care facility, but he was in the skilled nursing part. And you saw him which and didn't know him, you would think, Oh, my God, this man is completely debilitated. And probably not cognitively intact. He was the smartest, sharpest mind I've ever known in my life up until the day he died. But he was very physically debilitated. He couldn't dress himself because of this multiple sclerosis. Now, he had a faulty heart valve. And the, you know, he had an aortic sclerosis. And so that can lead to sudden death. And his doctor told him, he had the option of having the less.. base of replacing, you know, repair replacement of the aortic valve. Now, if I'm just looking at a book, reading about the station, I'm saying, No, don't do it, don't go into the hospital and have the surgery, you have enough problems. And the likelihood that this is going to extend your life is not great. But Mike was very capable of making his making his own decisions. And he very much wanted anything that had the possibility of helping his energy level, or extending his life. So he absolutely wanted that surgery and had it, and it didn't have the desired effect of increasing his energy. But it did have the effect of he made that decision. He was driving the bus of his life, you know, and that was totally appropriate. And I mean, I flew out to where he lived, and, you know, went to with him and saw him through that, because that's what he wanted. Now, if that had been my mother in that situation, she wanted to wanted that for a million dollars. So it's very different, just depending on the person's, you know, outlook and what their philosophy is.

So there's, there's no one size fits all. There's no recipe, that's why this is something that needs to be... And it's not a one and done conversation. It's a continuing, evolving conversation between doctor, patient, family members all together working as a team.

Yes. Right. And I think it really like you say, That's so true. It's an evolving ongoing thing as is life. And as you get more another diagnosis, we need to check in again, and ask the doctor, you know, realistically, what does this mean? And if something's recommended, realistically, how is this going to help me? And the million dollar question that I tell people to ask? If, if I were your sister or your mother with my with my, you know, medical situation, my age, would you recommend I do this?

That's a great way to phrase it.

And now, a you're hoping they'll answer truthfully, but no matter what their answer is, that's not necessarily a prescription for you. I mean, I had, I did a surgery of a mastectomy on a woman who was in her late 80s, who had advanced dementia, who had to have her healthcare power of attorney signed for the surgery, her healthcare power of attorney was her son who was a physician. So it's not necessarily that whatever the physician may say, Sure, I think you should have it because that's just how that person operates. But it's just it is a interesting, you know, thing to put to a to a doctor, when they're recommending something to kind of say, oh, let's look at it from that lens, as opposed to your doctor lens, you know, with your knowledge of what's going on? There, there's just a amazing book that I would recommend, and I'm sure you've read it, "Being Mortal".

Not yet. You're the second person to recommend it, though.

It's just amazing. Atul Gawande is the doctor's name. He's written a number of books, and he's just a unbelievable person. That book is amazing. And he talks about, and I think I talked about it in my book, too, when a person who has cancer and they've gone through radiation, and they've gone through different rounds of chemo, and now that that latest round of chemo did not help. So, very frequently, a physician will say, well, the next thing is, you know, this other chemotherapy? And the question as well is that gonna help me? And the answer is, Well, this has been shown to be the thing that extends people's, you know, life, obviously.

By a few months.

Exactly.

And you're gonna be in pain.

Well, that's, that's the piece that's never filled in. And so that's the question that I want to give people is when that next thing is recommended is to say, what is that going to buy me at what cost? So if that's going to, if you're saying that studies have shown this isn't the thing that is our last chance to get you more life? What's the best case on that? And frequently the answer if the physician knows the research is two, three months. Okay. So I'm going to be going somewhere for these last two or three months of my life getting this and taking, you know, a jar full of medication to counteract the side effects of this, is that what I want?

Yeah, and I suppose there again, there's there's so many nuances to these conversations, right? So it could also be could look at it if I play devil's advocate as well, it'll buy me two more months. And I want to be here with for these two more months, no matter what am I here, no matter what too.

Nadine, I'll pick you up and drive you to go get that therapy, if that's what you're thinking. But you need to have that information.

Exactly. That's what so that's what I'm hearing you say that you need, this is informed as much as possible, so that you can feel as the person who's who as the patient, and as the family members that you are making an informed decision with as much information as you can, because there.. we're all people there are lots of emotions involved.

Yeah, and there are a lot of choices. And, and absolutely, I, I would never tell someone not to have a therapy or whatever. And if it's gonna buy your 24 hours, whatever. You know, I have another story of when my brother eventually did go into the hospital, it was during COVID. And he was having what turned out to be a bowel obstruction. Again, that's something that you need to go into the hospital. He was in a different city, you know, on the phone with people trying to manage things and he was very weak from his multiple sclerosis. He couldn't in the when I was talking to him when he was in the emergency room, they had to hold the phone for him. Well, so I am getting making arrangements to fly there. And I get a call the morning saying he coded the night before. And the physician that was talking to me, we found out he didn't even have a nasal gastric tube. So for your listeners, when someone has a bowel obstruction, fluid and things start to build up in the stomach, and that's why they put in that tube and the person's nose that drains the stomach, you know, if you don't have that, and you're laid flat, all of that has the risk of coming up and going into your lungs. And that's what happened. So they coded him, and he was in the ICU, and I was on my way there. And he was still alive when we got there. And the ICU doctor said, Well, you know, we obviously need to talk about end of life, you know, taking him off the ventilator. And I was his healthcare power of attorney. And I said, I understand what you're saying, because I've had this conversation with hundreds of families. But that's not what he would want. Because this was the brother who went in for his aortic valve change. This was not another family member, I would say, Absolutely, we're gonna take, you know, I've done that too. But this man wants every second of life that he can have, we have no reason to believe he's in pain, you know, we need to honor that. And it was a knock down, drag out fight. It was kind of like the opposite situation. You know, we're usually it's the family saying. I mean, it's, it's, and I tried to tell this doctor, I understand, I wrote a book about it, know what you're saying, I know he's going to die. I know, there's nothing we can do about that. But we are not taking him off the ventilator, because I am honoring what he specifically wanted for his life. And, you know, so I mean, even if you have these clear things, it's it, you really do need an energetic advocate, sometimes, you know, to make sure that, but none of it and so I felt like even up to his last moment of life, he was directing his care, even though he was unconscious. Because he had made it very clear to me over many conversations over the years, and, and the decisions that he had made. So if you want to always be in charge of your life, and being the person who's making the decisions, even should you get dementia, and you no longer can do that. You need to have these conversations with your family and your physician now. And maybe it is that I want every last moment and bring on everything you got. I want, you know, and and wonderful, we will absolutely do that. But for most people, that's not what it's going to be. And you need to tell people.

Wow, Margaret, this has been a wonderful and difficult conversation. But you've definitely got me doing a lot of thinking and, and ways that I can be braver in my own life too, and start having some important conversations. Yeah. Now I'm going to turn the microphone over to you for a moment. I wonder if you have a question for me.

Well, I do I have I would like to know, what led you to this part of your career, given your training and everything you've done to achieve the things you've achieved.

The career switch you mean?

Yes, yes.

I was five, when I said I wanted to be a doctor. I remember I was 13 and my uncle who had lived with us, my maternal uncle was either going to medical school or had graduated. Oh, wait, no, we went in was a medical school graduation. And so we were celebrating, and I announced how proud I was of him because he was my mentor. And I said, I want to follow in your footsteps. I was like really drawing the line in the sand. Announcing it out loud. This is what I'm gonna do. Now. My intention was, as corny as it sounds, to help people. I am a servant. That is really something, and a nurturer. That is the very strong ,my strengths. Those are my strengths. A couple of my strengths. What your vision is naively, not having been in that environment and not really going through it and what the reality becomes when you're actually practicing this was called a medical practice, did not align for me. So I have, I had to change and make the decision that practicing medicine was not sustainable for me. And that instead, there was another path for me to continue to serve in order to maintain my integrity and my vision and, and to honor all of the things I've valued and believed in my life. I'm not, I'm not simply made to be a career person. It's important to me, yes, to contribute. But it was also extremely important to me to be really involved in family and to be the best mother I could be. And the best wife I can be because that nurturing part of me needed that in my personal life, too. And medicine was compromising that for me. And so it just simply was not sustainable. I was very, very miserable. And so I've since found ways, and I'm evolving, because we do we change we learn, as you so well said earlier. And so it became how, what's a different path that I can take? How can I show up, contribute and do the work, I feel really passionate about. And, and that's aligned to my beliefs and values. And I don't have to compromise completely my personal life. And so that's how I found my way to doing this work. Because I really believe that I'm serving in a very necessary and unique way. Right. And I'm very proud.

Now, that's amazing. That's wonderful. And I applaud your ability to make that switch. Because being a physician, that process is so arduous, and such an investment emotionally, physically, financially, that to have that self knowledge and courage to say, Yeah, but this is not fulfilling these important aspects of who I am. I think that's wonderful.

Thank you, Margaret. The last question, I'm going to ask you, I ask every guest, what is your personal definition of what it means to be healthy?

I remember, you must have written me that question, and I was thinking about that. And it kind of goes back to the book, in terms of it is an individual thing. And I think it's the ability to live your life on a daily basis, the way that you want to, you know, to, to be able to do the things that... everyone has limitations, and so within your limitations to not to be stopped by health issues that pop up, to be able to live your best life in the fullest way possible. And that's mental health, as well as physical health, you know, and I know, your philosophy I can imagine is that those are very much a part of the same thing. It's, there's no, there's no division, where mental health and physical health starts, both all of it figures in and how you live your life on a daily basis, and are you being the person that you want to be that you feel that you want to be, you know, if you're not, if you're not getting sleep, if you're not having the energy, if your energy is drained, because you're not eating properly, or that sort of thing, then you're likely not the person that you would sit down and say, This is who I want to be. And so maybe you're not healthy. Maybe there are things you can do to be more healthy, that's going to lead you to be your best self.

Ladies and gentlemen, a round of applause for my esteemed guest. And you've been so warm, so kind, so generous with your time, especially tackling such a deep subject with me. I'm very grateful to Margaret Fitzpatrick, who wrote the book you must read and pass out to everyone you know. It's really important. Getting the Best Care: Rescue Your Loved one from the Healthcare Conveyor Belt. You'll be happy because you'll have less stress as you protect your loved one from suffering. Thank you, Margaret.

Thank you so much Nadine.

Welcome to Health Raisers. Health raisers, don't just survive. Together, we thrive. I'm your host, Dr. Nadine.

We thrive in community.

We are not in isolation from one another. We are completely interconnected and interdependent.

Community is not one group serving another. It's not even everybody working together. It's seeing the good in yourself within community, and seeing the good of the others within the community.

It doesn't take anything away from me to be able to encourage somebody else. And vice versa.

We thrive in our bodies.

My value is that I want to age with strength, and be able to have the most quality of life for the longest amount of time. That's my driver. You have to have an intimate relationship with yourself first and foremost, never mind your husband or your wife or partner, whatever. Starts here.

One thing is it's good for our brains physical health to get the sleep. Second, memories consolidate in sleep.

It's really important to identify what makes your body function at an optimal level. The way we do that is being very sensitive to the foods we eat and how we feel afterwards.

We thrive in our minds.

We make ourselves such low priorities that unless it's obvious, we don't take care of ourselves. We are socially and culturally conditioned to avoid self care, and it's wrong.

Years later, lots of therapy, lots of other things I have now learned to be able to say like, everybody doesn't have to be your friend at the same level. It's certainly a quality versus quantity.

What do you want? Why do you want it?

We thrive in our spirits.

Fear and faith can't occupy the same frequency.

I am nature and nature is me. And you can't separate it.

There is a power in me to choose my journey. And if I want to choose my journey, I have to cultivate my soul.

We thrive in our intellect.

Better beats perfect every time.

And so I think I think the mistakes are beautiful because it gives us a reason to get up and push for something and grow and find a new level of ourself.

Variety is important in your daily life because it's really good for your brain. And we thrive in our emotions.

There's something about common experience that creates a deep, loving community.

We will serve others better when you meet your own needs. You can serve from an empty vessel but you will be angry, frustrated, very unhappy. And that comes through in your interactions with other people.

The more agreeable we are, the more likely we are to forgive.

I think kindness is a way of somebody conveying to us that our dignity matters to them.

Come join this health revolution. Bring your whole self to your whole life.

Transcribed by https://otter.ai