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The cost & courage of caring - stories that spark resilience.
Speaker 1 (00:00.41)
Welcome to episode 10 of the Caregivers Podcast. I'm your host, Dr. Mark Ropolesky, and you can call me Dr. Mark. There are conversations we avoid not because they're unimportant, but because they're uncomfortable. Today's episode is about one of those conversations. I'm sitting here today with my colleague, Dr. Jennifer Fleming, liver and transplant specialist, scientist, educator, mother, partner, and caregiver in every dimension of her life. Her work exposes a crisis most people don't see coming.
the rise of alcohol-related liver disease in women, caregivers, and even clinicians themselves. This is a conversation about biology, about burnout, about coping mechanisms, and about why people who care the most for others are often the last to be cared for. Jen, thank you for being here, and welcome.
Speaker 1 (00:46.254)
If you've not yet had a chance to subscribe, press the subscribe button. helps us out a lot. It gives us a better chance of being here tomorrow.
Jennifer Fleming, welcome to the Caregivers Podcast. I'm so happy you're here. I welcome you as a friend and a colleague. Let's start from the beginning. Let's start with the moment that everything changed for you. When did you realize that liver disease just wasn't going to be your specialty, but was going to be your why?
Thanks, Mark. Thanks for having me here. So I think for me, whenever somebody asks me that question, there's a very specific story that comes along with this. So when I was a junior resident, first year internal medicine resident, I took care of an individual who had decompensated liver disease. And he was very sick. He was in and out of the hospital multiple times.
I got to know him and his family, I thought relatively well during those interactions. And every time he came into the hospital, I thought it was going to be his last. And so eventually I moved on into my second year of training and I was doing a outpatient GI block. And I was walking down the hall and someone called my name. And I turned around and it was this patient. And he had gotten a liver transplant.
And if I had not known who that person was, if someone had told me, I would not have recognized them walking down the street. And to me, it was nothing short of a miracle to see somebody who was so ill, but who had persevered and had gone through this, this, you know, significant event in their life and to now see them on the other side. To me, that really sealed the deal for me that these...
Speaker 2 (02:37.484)
were the types of individuals that I wanted to care for.
Speaker 1 (02:43.448)
What powerful story, what a powerful welcome into the amazing specialty of hepatology.
positioning now. What keeps you up at night worrying about who's on the transplant list or who can't make it onto the transplant list? There's we're seeing an epidemic of change in a couple of domains liver disease, but tell me about what you've witnessed with alcohol.
So that's also an interesting story that has evolved over my journey as a physician. So I would think, you know, we all have always associated alcohol with liver disease. That's just the general public knows this, that's well known. But I would say that, you know, early in my training, we would see it, but it would be kind of your typical stereotypical individual, middle-aged, older Caucasian male with severe alcohol use disorder.
who was coming in with very severe liver disease. And so that's what we would typically see. And then I recall in my fellowship training or in my GI training, there was one time I was on call and I got called to come to the ICU and there was a young woman in there and she was probably in her mid thirties and she was in liver failure from alcohol and she was a mother.
And I remember sitting there and I was like, this is so strange. I was like, I've never seen this before. This is not something that we typically think of when we think about alcohol associated liver disease. And I just remember that really stuck in my mind because to me, I was like, my gosh, I've never seen this before. Now I see it almost every day. And so it's been shown really over the past decade that
Speaker 2 (04:42.048)
Alcohol-associated liver disease is escalating. And when you look at the trends of who it's impacting more so than others, it's actually young women where the rates are going up faster than any other demographic. And we see this. I remember to think that when I was in my training 15 years ago, I saw one case and it stuck with me because I'd never seen it before. And now it's just bread and butter. I see it all the time.
Last time I was on call we had a couple.
And it's not just here, it's everywhere, you know.
And that young person in liver failure, when the liver's failing, complications can arise and they can be catastrophic. Things like bleeding, where in the blink of an eye, a liter of blood is vomited and there's blood everywhere. Patients are rapidly put on ventilators so they don't drown in their own blood. And then we get called in hoping to make the difference. What's that like in the moment for our listeners to understand?
It's very dramatic. And some are more dramatic than others, but it can be exactly like you described. You can walk into a room in the emergency room and there can be blood splattered everywhere from individuals who are vomiting up blood from these varices, these veins that are a complication of their cirrhosis and liver disease that are like balloons. And when they get to a certain pressure, they just pop and burst and then blood just gushes out.
Speaker 2 (06:17.218)
So it gets your adrenaline going. But you know, at least based on your skill set, that there's something that you can do to help. So typically, we come in acutely. We get the patient stabilized. They may require intubation, transfer to the ICU. And then we go down with endoscopy, which is our scopes with little cameras and lights on the end. And we go down and we find these big veins. And we try and stop the bleeding.
And for the most part, we can typically control somebody's bleeding. We can typically stabilize them and get them out of that acute phase. Certainly there's people who actually don't make it and may die at that first presentation. But I think for the most part, we're able to get people out of that acute phase. But sometimes it's the person's very first knowledge that they've ever, ever had liver disease because liver disease is silent. And so I've seen many people.
who come in for the very first time, were having a major complication from advanced liver disease who never even knew that there was something going on. And so then their journey starts there and wondering, you know, how did I not know about this? Why me? What can we do about it? Am I going to die? You know, so it's a, it can be such a life changing thing that happens to somebody.
Well, I remember not all that long ago, you know, managing to get the bleeding to stop. we were finishing up and just looking up at the head of the bed, seeing this young woman, and I just couldn't help but shake my head. it just, the impact just, I think on caregivers, on specialists too, seeing this trend, I mean, it needs to be understood. It needs to be
dissected, we need to think about factors that are contributing to it and we need to think about how we can change the path here because someone to face complications as you described and never really knowing means that there's a public health initiative here that we really need to tap into and caregivers everywhere need to know about it, both at primary care and specialist care. So why is alcohol associated liver disease on this rampant rise, especially in young women?
Speaker 2 (08:45.07)
So I think there's many theories. I don't think there's just one thing that's driving it. it is a public health crisis, really. Like alcohol-associated liver disease can be 100 % preventable if individuals aren't exposed to alcohol. But I think there's been multiple things that have happened within our society and within the alcohol industry, especially over the past decade, which has really...
put young women in a situation where they're being exposed to alcohol at levels that they hadn't been before. So first off is if you look historically, if you say if you look back 50 years ago and look at drinking patterns among men and women, men always drank more alcohol than women. And then multiple studies have shown that this gender gap has closed and it started closing around individuals who were born around 1980.
wherein that men and women were now drinking the same amount of alcohol as before. That's compounded by the fact that females, so female sex, so biologically you're born as a female, there's certain things that predispose you to herms from alcohol at lower levels than your male counterparts.
So one is alcohol dehydrogenase, which is the enzyme which metabolizes alcohol as made in the stomach. But it's been shown that women have, on average, 30 % less of this enzyme that they produce compared to men. So they are having more alcohol for the same amount of alcohol consumed that is not being metabolized and can lead to toxic buildup.
The second is in general females are of smaller body habitus and have lower levels of body water than do males so if you put the same amount of alcohol in the body of a Female as a male the concentration of alcohol is actually going to be higher
Speaker 2 (10:50.198)
Other things that come to play from kind of a sex point of view are that the liver is a sex hormone responsive organ and that it not only produces your sex hormones, but it responds to different levels of sex hormones. So it's not really completely understood, but sex hormones play a role in the liver's ability to function and regenerate. And in some cases, it's actually thought that estrogen is protective.
but we don't exactly know everything that it does for the liver. Then if you look at the other lens, so we talked about the sex specific changes, there's also gender related changes. And so we've talked about how women now consume the same amount of alcohol as men. There has been changes in how the perceptions of alcohol for women are perceived in society.
So there's something called the mummy wine culture, which you may or may not be familiar with, but it's basically on social media where basically what it does is it normalizes alcohol use among women because as women have evolved over time to potentially become more like men in that they're working outside the home, they're in higher level jobs, yet because of the
gender norms, they are also still expected to be the main caregiver for growing families and parents and all of this stuff. Now women actually have double the job that they potentially would have before with double the stresses and the need to multitask and do everything with society's expectations that you have to be a perfect mother, you have to be a perfect coworker, you have to be a perfect friend.
And so this culture has evolved, you you're doing a lot. You need to reward yourself by drinking alcohol, really to kind of normalize that trend. And then that has turned into, you know, restaurants, bars, kind of taking advantage of that and having kind of like girls night where they have, you know, drink specials for women. The alcohol industry is targeting women with their marketing. So prior it was always targeting men, but now
Speaker 2 (13:10.52)
There's been studies that have been shown that there's specific targeting towards women with, you know, like pink fruity drinks or, you know, having women consuming alcohol to try and normalize it and kind of targeting them. So I think that's contributing as well. From a governmental point of view, access to alcohol is so much easier now than it was, say, a decade ago. So the government has started to relax.
where you can actually purchase and consume alcohol, whereas before it was strictly in government funded, sanctioned alcohol facilities. Now it's expanding, as we all know. You can go into your local gas station and buy alcohol. And with the advent of COVID, there was now alcohol delivery. When you go online and order your Uber Eats, you can just add a couple bottles of wine or beer or whatever you want, and it will be directly brought to your house.
And the other thing is the types of alcohol that people are drinking are changing specifically related to kind of ciders and kind of coolers, that sort of thing, where they not only are having a high alcohol content, but they also have a high sugar content. Double whammy. sugar is just as toxic to the liver as alcohol. Yet there's no label on alcohol, unlike any other thing that we put in our body where we can look at the
label and say, okay, there's this much fat, there's this much protein, okay, I know how much is good for me, I know how much. We have no idea how much alcohol is in the container you're consuming. Yet people are telling us, cut down on your alcohol, only have one standard drink per day. What's the standard drink? How many standard drinks are in this that I'm like, there's the people don't have information to understand what they're actually consuming. So how can they actually follow recommendations that they don't actually know what they're consuming?
So I think kind of all of these factors is kind of this perfect storm in addition to other co-factors for liver disease, which are also escalating specifically among young people, including individuals living with obesity, diabetes, and other metabolic risk factors.
Speaker 1 (15:23.374)
You know, that type of marketing you described, that's been around for a long time. I think cigarettes used to get marketed to women like that. Like, you know, you've earned it, baby, I think was a slogan from the 1970s. But, you know, this phenomenon that you so amazingly described paired with, I think still some prevalent notions that, you know, moderate drinking is OK. It may even be healthy for you. I think there are a lot of people who
critique the research now saying that, you know, some of the benefits of alcohol were probably just construed because of poor study design, And, you know, the average listener or the average person who's exposed to advertising doesn't have the skill set to figure those things out and relies on what they hear and, you know, common shared ideas amongst peer groups and amongst
whoever they speak with and now on social media, of course, and you can see how this sort of snowballs forward. And, you know, when you mentioned obesity and the population having higher BMIs, that doesn't only synergize for liver disease, but alcohol has been identified as a carcinogen. And among those with higher body mass indices, its carcinogenicity goes up considerably.
Uh-huh.
Speaker 1 (16:49.634)
Yeah, that's kind of a little bit under the radar. We're not hearing that broadcast broadly and loudly. What are your thoughts about that?
Yes, it's very true. I was at a public health Ontario symposium related to alcohol and around messaging that they wanted to be able to convey to the general public regarding alcohol and how it is associated with cancer because I think some people don't necessarily intuitively make that link, but it certainly is with respect to liver disease.
It certainly would be a main driver of liver cancer, but it's also been associated with breast cancer, colon cancer, lots of different types of cancer. so I think it's really kind of, know, public health, think is starting to, I shouldn't say start, I think they've always understood that alcohol from a public health perspective is not good for society.
But alcohol is such an interesting substance because you can kind of compare it to, like we said, tobacco and cigarette smoking and how that kind of all evolved over time. But alcohol is so ingrained in our culture related to socializing, celebrations, all of this. The alcohol industry is very powerful. The government makes money from selling alcohol.
The whole thing is there's a lot of conflicts of interest. On the one hand, you you want to do best for society, then really you should just completely cut out alcohol altogether. But on the same token, people enjoy alcohol. It's something that can bring joy to their life. They, you know, they spend time with friends and family, that sort of thing. You know, it's kind of...
Speaker 2 (18:49.59)
You know, there's the yin and the yang here of, yes, it's really bad, but it's really good. And I think that society and people in general really struggle when new guidelines come out surrounding alcohol. Because I think the majority of people don't wish it actually wasn't harmful because of how ingrained it is in our society and how people do enjoy using it. So.
It makes it very difficult when Health Canada came out a couple years ago and changed their alcohol guidance to say that you shouldn't really have more than one drink per week. Everybody was up in arms. And it's not necessarily that it was new information. It was just information given to them in a different way. And for people who use alcohol and felt as before they were using it responsibly and want to continue to do it that way to all of a sudden be told, oh,
even one drink per week is harmful, then makes them reflect back on themselves and I think have to kind of reconsider their relationship with alcohol, but again, be struggling with what to do.
Well, it is that struggle, right? Because you then sort of enter that sort of reevaluation of your identity and how you identify that relationship with alcohol. And to use your example of an overburdened woman caregiver who might feel a lot of pressure to conceal their distress associated with the responsibilities, you could see how that relationship with alcohol, you know,
might at least in some veins be looked at as not necessarily a negative relationship, but just one that exists, but they're trying to live healthy around that. And now all of a sudden that's wiped off the table. in caregiving in that sort of sense, and whether it's physicians, nurses, home caregivers, tack on the sandwich generation where you might be a
Speaker 1 (20:49.774)
professional and then homegiver to your family and then have extended family you're looking after. I mean, do we underestimate the risk of alcohol use disorder in those populations? Just, I mean, there's so many sociological factors that are just cramming in. I imagine there's a little bit of a sort of tip of the iceberg effect here that there may be a lot more and maybe that is potentially fueling yet the next wave.
As know, caregiver numbers are increasing, responsibilities are increasing, caregiver burnout is such a factor now as the number of people who need to be cared for by others are going up and we're actually facing shortages professionally of individuals who can help. It seems like a perfect storm is brewing and if ever there was a time to say, just don't turn to alcohol as the solution, it might be now, you know.
Try and get out for a walk after dinner, that'll serve you a lot better. What's your read on the landscape of where caregivers find themselves? I appreciate your description of the extra burdens that women still naturally take on when they're trying to fulfill themselves to the whole potential that they ascribe to.
Yeah, mean, I think there's not a lot of data on this. I think we know in general that in the general population, alcohol use disorder is thought to be about 5 % of the general population. Again, that is all based on individuals reporting and answering questions related to the harms of alcohol. So alcohol use disorder is actually a psychiatric diagnosis that is made based on
how alcohol is impacting your life and your relationships. And so there has been some work done looking at alcohol use among caregivers, specifically my knowledges related to physicians as well as medical students.
Speaker 2 (22:54.998)
And typically, whenever they've done surveys related to that, the proportion of individuals who either have heavy alcohol use binge drinking or alcohol use disorder is always higher than what's in the general population. And that's even based on some Canadian statistics from Canadian medical students as well, where they found that almost 50 % of individuals in medical school were using alcohol in a harmful way.
And I think that one thing is, sometimes we may not recognize how we are using alcohol in order to treat some of the stress and burden that builds up from being caregivers. It's something easy to turn to versus accessing, say, psychologists or
individuals to try and help you work through some of these things. It's always just easy to grab something and drink. And I think that, again, with kind of society kind of saying it's okay to do that, people are turning to that. And a lot of people that I would see in clinic, if you actually talk to them about what's actually driving the alcohol use, a lot of time it is related to
Absolutely.
Speaker 2 (24:16.174)
what they're dealing with at home that you may not necessarily be trained to ask for when you go through medical school. Are you caring for somebody at home? Do you have someone who's dependent on you? What else is going on in your life? What's happening with your extended family? What sort of issues are arising there? What other cultural things are coming? There's a lot of things that can weigh on people.
And I think particularly for women, and this has been shown to, if you look at differences between males and females with respect to seeking treatment for alcohol use disorder, females are much less likely to do so, probably for many reasons. One, especially if they're mothers or caregivers, the stigma associated with that and fear that your children might be taken away if you divulge that you actually have alcohol use disorder.
So many women will not divulge that because there's fear of how that will impact your ability to continue to be a caregiver. Treatment for alcohol use disorder is complex. It's not simple. It's medical therapy as well as usually cognitive behavioral therapy. So taking time out of your day in order to go to sessions when you're caring for other people and maybe not putting your health first, putting everybody else's health first.
instead of your own. Having to take time off work in order to get the treatment that you need if you really want to work at it. so loss of income if you're taking time off work, especially say if you're a single mother caring for children and you are the sole income earner, it might not be what you think in your best interest is to take a half day off to go.
get yourself treated versus bringing home that income to support your family. And there's also lots of data surrounding intimate partner violence and how approximately 80 % of women who have suffered intimate partner violence have underlying alcohol use disorder, again, as a coping mechanism to deal with the trauma that they faced because it's difficult to deal with it otherwise because it's very.
Speaker 2 (26:33.292)
difficult, you might not want to divulge it, it's time consuming, and you may not be able to get away from your partner.
talk about the burden of caregiving and I think some compounding factors which probably fuel that a lot is a sense of disconnection, a sense of loneliness when you feel like you're in it alone and the caregiving is overwhelming. And I think that that extends towards professionals functioning in a system that's under a lot of challenges these days. you know, the humanity that comes with
struggling with substance use, not necessarily having a disorder, but not being appreciative of the power it has to take a more prominent place in your everyday approach to trying to adjust to the pressures of caregiving, to the pressures of life, to being everything to everybody. The shame factor and this acknowledgement or unacknowledgement of the human, the humanness of being vulnerable to those things really creates a horrid storm of
potentially labeling and really sort of creating a destructive environment for people to function in.
What are the patients you're seeing with this type of liver failure? I mean, if you look at the data from like Canadian data, the average age of first drink in Canada is about 14, 15 years old, right? So, I mean, I think that we always kind of think, well, they're, you know, quote unquote children, but children can drink a lot of alcohol, especially binge drinking. So it can start early. And it's really interesting, like some, I...
Speaker 2 (28:14.666)
Over the years, I've kind of evolved in how I take my history of alcohol. But sometimes you'll talk to people, and they started drinking at eight, nine years old, is when they would have been starting to, depending on the culture in their family, or if they're in situations where, again, they're turning to alcohol because they have nowhere else to turn to. I think the youngest person that I've seen is probably mid-20s.
coming in with liver failure from alcohol. I think that's probably around the youngest age I think most of my colleagues would have seen. I don't know if I've seen anybody younger than that, but probably mid-20s. And we've certainly seen. So younger people have, you know, their body has resilience and can sort of.
through the fight.
Yeah. Yeah. And I mean, your liver is very resilient, right? Like you have to do a lot of damage to your liver from alcohol in order to end up in liver failure. It's not, you know, so the people who are, you know, progressing to this rapid liver failure are consuming large amounts of alcohol on a regular basis, but that can happen, right? You know,
The patterns can be established young too and it's that classic stereotype of the young teenager who downs six coolers in 45 minutes and then is wasted for the next god knows how long and I mean that just sudden surge which is just so toxic.
Speaker 2 (29:43.97)
Yeah. And then if you compound the sugar on that, like I really think that kind of, you know, seeing these young people and sometimes asking them what they're drinking, a lot of them are drinking those like tall boy ciders. And again, there's nothing on the label, but if you actually go and look at the nutrition information online, there can be 40 or 50 grams of sugar in addition to all the grams of alcohol in that, right? And so you're just pounding those back.
In a susceptible individual, right? Like you're have two people who consume the exact same amount. Someone will get liver failure, somebody won't. There's lots of other genetic and environmental factors at play. But I think in that susceptible individual, their liver can't tolerate it, but they don't know, right? Like you think you're young and you're resilient and everybody else is doing it and I'll be fine. I'm hungover, I'll get better. But in certain people, it's not as simple as that.
It's, you know, back when we were all little once and young once and we're tempted to try alcohol because we saw the adults in our life and the extended family in our lives drinking. Usually you snuck a swig of whiskey and most of the time, or some other distilled spirit, and most of the time you grimaced and you spat it out and like, could drink this stuff. But now it's all switched to this is amazing. Bring me more. it just.
I mean, it's like, you know, yeah.
tastes like there are no worries.
Speaker 1 (31:08.056)
Thinking back to the vulnerability, you can appreciate how much alcohol may actually be, when it comes to that sort of fine line between use and misuse, maybe more of an occupational injury and not really a personal failing, yet it's still branded as a personal failing. And I think, you know, more education about other options and
Other elements of self care that can offset that need will be so important for the future. If you could rewrite one public health message about alcohol with all you've witnessed and seen, taking into consideration what you've learned, your training, your firsthand experiences of livers failing in 20 year olds.
What would it be? What would be the most important message you would offer out there?
That's a tough one. I mean, think overall, I feel as though the general public is undereducated about alcohol. There's lots of myths, there's lots of hearsay, there's of stereotypes about alcohol. I think we need to open up the conversation. I think the other thing, one of the things I think really drives
people's inability to seek the help that they need is the stigma surrounding alcohol use, specifically alcohol use disorder and how society puts the blame on the individual that it's their choice and that they've made this decision. So why should we help them? That alcohol use disorder is actually a disease and it's a chronic disease and it can go into remission and it can relapse just like any other chronic condition and it requires identification and it requires treatment. It's not just a choice.
Speaker 2 (32:59.938)
And I think if we as society start to recognize the significant harms related to alcohol and that it's not just a personal choice for individuals who have underlying alcohol use disorder, if we can be more empathetic and compassionate about the situations that typically these people are in, then I think when we become more empathetic and we can kind of gain some perspective, then maybe we can try and change the narrative and
provide more supports in society's journey with alcohol.
I wanted to take the time to thank you for being with us today. You bring such an authentic story and one that we can all learn from with such important messaging as well.
It's worrisome to know that over the course of five, 10, 15 years, a couple of drinks after each shift can translate into irreversible surprises. And I hope that your message was heard loud and clear today, that we need to be aware, we need to be careful, and that
We need to do what we can to not find ourselves in that situation. And to the young generation who's listening, young students in different fields, young people everywhere, this one was for you. Thanks for being here. Thanks for joining us on the podcast today and thanks for listening and we'll see you next time. Before we wrap up, I wanted to remind you of something important. The conversations you hear on this podcast are here to inform, to support.
Speaker 1 (34:41.144)
to spark reflection. We're not a substitute for professional medical advice, care, therapy, or crisis services. Listening to this podcast does not create a doctor-patient or caregiver-client relationship between us. If you're facing a medical concern, health challenge, a mental health challenge, or a caregiving situation that needs guidance, I encourage you to reach out to a qualified professional who knows your story. If you're ever in crisis, please don't wait. Call your local emergency number or recognize Crisis Hotline right away.
We deserve real time help and support. The views you hear on this show, whether from me or my guests, are our own. They don't necessarily reflect any organizations we work with, are part of, or have worked with or been part of in the past. This podcast is an independent production. It's not tied to any hospital, university, or healthcare system. Thank you for being here, for listening, and most of all, for taking the time to care for yourself while you continue to care for others. I look forward to hearing from you.