Living with a disability with Lisa Iezzoni, MD

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Larry (00:07):

You are listening to specifically for Seniors, a podcast designed for a vibrant and diverse senior community. I'm your host, Dr. Larry Barsh. Join me in a lineup of experts as we discuss a wide variety of topics that will empower, inform, entertain, and inspire as we celebrate the richness and wisdom of this incredible stage of life.

Larry (00:39):

As many of us age, we develop physical problems. We have difficulty seeing, hearing, and with mobility. We may require a walker, wheelchair or motorized device to get around, and we feel that our physicians just don't understand our problems. So we asked Dr. Lisa Ioni to be a guest on the podcast to help us work through the challenges we may face. Dr. E Yoni is a professor of medicine, Harvard Medical School, and based at the Health Policy Research Center, Mongan Institute at the Mass General Hospital. Her research for the past 25 years has focused on improving the life experience of people with mobility disability. Dr. Ioni has conducted numerous studies examining the healthcare experiences of persons with disability. She has also explored home-based supportive services, her book Making Their Days Happen, paid Personal Assistance Services, supporting people with Disability living in their Homes and Communities. Was published in 2022. She is the Sally Starling Seaver Fellow at the Harvard Radcliffe Institute. Lisa is a member of the National Academy of Medicine in the National Academies of Sciences, engineering and Medicine. Welcome to specifically for seniors. Lisa,

Lisa Iezzoni, MD (02:29):

Thank you so much. Hmm.

Larry (02:34):

Would you share your personal story with our listeners and how that influenced your choice of medicine as a career?

Lisa Iezzoni, MD (02:45):

Oh, okay. You are making an assumption that I like chose medicine as a career rather than it chose me <laugh>. So, okay. So I actually grew up with a father who was a pediatrician, and so there were screams of children getting immunizations rattling throughout our house because he had a home-based practice. And so I decided early on that there was no way I was going to be a doctor, but I graduated from college in the mid 1970s when there were all sorts of amazing kind of recognition of health policy problems in our country. And so after graduating from Duke, I went to Harvard University to do a degree in health policy at the Harvard School of Public Health. And that's where some amazing doctors said to me, you know, Lisa, given what you tell us about what your goals are, we really think you should consider going to medical school. So I was like, oh, dear. Okay. I haven't done any of the science prerequisites. So so I went back, I did biology, chemis reading, organic chemistry, organic chemistry, physics and calculus in one year, applied to medical school and matriculated at Harvard Medical School in September of 1980.

Lisa Iezzoni, MD (04:13):

At that point, I'd actually had four years worth of on and off. Again, shadowy symptoms that were difficult to explain, were just bizarre. And again, I would kind of wait them out. And so I was busy, I was young, I was invisible, and I didn't follow up. My most dramatic symptom right before medical school was that I'd be jogging along the Charles River in Cambridge, and I wouldn't know where my legs were and space, and I'd feel like I had hot branding irons pressing into my flesh. When I started at Harvard Medical School, these symptoms returned with a vengeance, and I finally realized I did need to seek medical attention. And at the end of my first semester, mind you, this is December of nine of 1980, I was diagnosed with multiple sclerosis.

Lisa Iezzoni, MD (05:25):

And so in total, given the four years before and the time since then, I've had MS now for about 47 years. Back then medical school was a very difficult place for a student with a disability. It just was not a time when disability was recognized as deserving of civil rights protections. And to make a long story very short, I went through, I did what I needed to do. I became increasingly disabled during medical school. But I did and achieved all my courses. <Laugh> and the medical school, however, decided that it was not gonna write a letter of support for me to apply for an internship or residency. And so therefore, I could not apply for an internship or residency. What the lawyers tell me now, in retrospect is that I experienced constructive dismissal, which is an active form of rumination. And if this were to happen now after the Americans with Disabilities Act was passed in 1990, I would've had some legal justification to contest that.

Lisa Iezzoni, MD (06:48):

But at the time, I didn't. And so I left medical school, though with a very clear message that I was a failure of medicine, you know, that I had a disease that medicine could not cure. It still cannot cure it. And so therefore, because of that, I was a failure and of the profession. And so I should just never talk about it. I should just never mention it. And so I was able to find a job doing health policy research, and it was actually an interesting period of time because in October of 1983, Medicare had made a major change in the way that it pays for hospitalizations. And that triggered a variety of different research studies that I was able to do that kept me busy in health policy. But I've very much obviously never forgot that I <laugh> wanted to be a doctor.

Lisa Iezzoni, MD (07:59):

And when I had finally kind of risen through the academic ranks, let me just put it this way, I was extremely successful as a researcher because I was terrified the entire time that I was gonna be fired because of my disability. And therefore, I overcompensated by working way too hard, publishing paper after paper, after paper, sorry. And so I rose to full professor in 1998. And at that point I said, you know, it'd be hard for them to fire me. And so why didn't I look around for topics that might be of interest to me and personally meaningful to me to do so? I had been traveling a lot back and forth to Washington for my work, and I found that I had started using a wheelchair in 1988, a scooter type wheelchair. Then, for reasons that I can describe why I chose that, but I did.

Lisa Iezzoni, MD (09:09):

And I would be waiting in airports and people would come up to me and say, look, I'm having trouble walking. My mother's having trouble walking, my brother's having trouble walking. I know people who are having trouble walking, and we would love to get a scooter like yours, but our doctors can't help us think about it. They can't, they don't help us. And so I did what an academic usually does, which is go to the literature and see whether this has been written about for doctors. And in fact, in the general medical literature, there was very little about what you do when you're walking fails, which is the title of my first book when Walking Fails, it was about developing progressive chronic mobility difficulties and what you do. And for that study, I I actually was able to analyze a database about what happened to people when they had mobility problems in terms of income and housing and so on. But I was also able to go into homes and interview a lot of people with mobility disability, and sometimes their spouse would be there, family member would be there. And so I got to hear stories from people about their experiences with mobility problems. And so that really launched my career. That's how I ended up where I did. So it wasn't a choice, it was just the way things happened.

Larry (10:46):

And in a recent fellowship presentation, you discussed, especially independent living for people with disabilities. Mm-Hmm.

Lisa Iezzoni, MD (10:57):

<Affirmative>. Yeah.

Larry (11:00):

And, and what it means for people with disabilities.

Lisa Iezzoni, MD (11:04):

Mm-Hmm. <affirmative>. Yes. So following World War ii, when all these soldiers returned from their military service with sometimes injuries that just could not be repaired, they started asking for accommodations and for supports to allow them. They were young people. They wanted to participate actively in their communities. They wanted to build families, they wanted to work. And they also didn't want people looking over them and telling them what to want, what to do. They wanted to be independent. And so historically, people with disabilities have been very much kept behind closed doors, told what to do, told by their doctor, you should do this. But the new generation, especially ones it came to the late 1960s, early 1970s, really didn't want that anymore and wanted to live independently, not in institutions in their own homes. And so that is the new independent living movement, which was very much codified in place by something called the 1973 Rehabilitation Act, which supports independent living centers to assist people to do that.

Larry (12:36):

And you also found that there were healthcare disparities Yeah. For people with, with disability. Yes,

Lisa Iezzoni, MD (12:45):

Very much so. So after I finished my, when Rocking Fails book about people with mobility difficulties, I kind of turned to what would be the next thing that I should research. And and I had heard a lot when I was talking to people for that initial project that they had trouble getting up onto examining tables. They had, you know, they weren't ever given a PAC test. And so I said, okay, we need to look into this. And so I started doing research on healthcare disparities for people with disabilities. And although that is focused primarily on people with mobility disability, I've also looked across disability types, although exclusively in adults, I haven't looked at disabilities in childhood. And my areas where I've really spent most time have been primary care, cancer care, and reproductive healthcare. In that research, I've probably interviewed more than 300 people. And so I've gotten lots of stories about what their experiences have been going to doctors, and often they have felt disrespectful by doctors, not heard by doctors that doctors don't understand what their problems are, that doctors really can't help them figure out how to live their lives more easily within their environments. And so that was how I spent about 25, you know, the last 25 years of research.

Larry (14:21):

And that is especially interesting, I think, to the listeners and viewers of this podcast, who are all older adults who may be having mobility issues now and have to travel with a wheelchair or a walker, someone to help them in. And this was discussed in a couple of articles in the New York Times and Boston Globe recently. Yeah. In which you talked about doctors who were reluctant to care for patients with disabilities.

Lisa Iezzoni, MD (14:59):

Yeah. So I was privileged to get funding from the National Institute of Health to conduct the first ever national survey of physicians about caring for adults with disabilities. And when those results came out, they caused quite a stir, because some of them were extremely troubling. 82% of doctors think that people with disability have worse quality of life than other people do. And lemme just put it this way, you know, I've been using a wheelchair since 1988. If I were to think that I had worse quality of life since 1988, I'd probably stay in bed and pull the blanket up over me in the morning. You know, I've kind of figured out how to deal with it. You can't see. But behind me is, well, my chair back is covering my wheelchair because I can't walk at all. And so I use a wheelchair for every mobility need that I have. And it's just the life that I have. It's, I've got good quality aspects to it, and worse quality aspects to it, just like everybody does. You know, everybody's life has, has positive and less positive components to it. But what was especially troubling is that 42% of doctors do not feel strongly confident that they can provide the same quality of care to their patients with disabilities as they do to other patients. And only 56% of doctors welcome persons with disabilities into their practices.

Lisa Iezzoni, MD (16:41):

It's also troubling that even though there are height adjustable exam tables, exam tables that are automatically raised and lower, and so a patient can just sit down at their usual seating level and then be raised by the doctor to a, to a level for an examination. You know, only about a third of primary care doctors have those kind of height adjustable exam tables. More specialists do, about 40% of them do. But that's troubling. And only 22% of doctors have a role on weight scale, you know, a weight scale that somebody who uses a wheelchair can get onto and have their weight measured. In addition, the survey found that that 50% of doctors have never hired an American sign language interpreter to interpret for a deaf patient who needs an A SL interpreter. And mostly what doctors do for people who are deaf or hard of hearing, more than 50% of doctors simply talk louder at their patients. Or else they talk to the patient's companion, which is very disrespectful. And more than 60% of doctors say that they never print out printed materials in large font, even for their patients who have low vision. And so these very kind of clear ways that you can accommodate and help people with different types of of functional limitations, doctors just don't do.

Larry (18:38):

And in my own experience, going to a physician's office, mm-Hmm. <Affirmative>, the assistant, the nurse will seat me on the examining table before the doctor even comes in. And the doctor has no appreciation of any mobility problems that I might have.

Lisa Iezzoni, MD (19:05):

Yes. actually, this goes back to some of my early research. I remember, you know, people talking about I remember one woman in particular talking about how she was tasked and bringing in her younger brother who had a mobility problem to see his doctor. And she was an adult. He was an adult, but she, that was what she was required to do within her family. And exactly as you say, the, the her brother would be put into the office on the examining table. And the woman told me that, she finally said to her doctor, you know, his wor his walking is getting worse, but how can you tell that if you never see him walk? And so, one of the things that I think really good doctors do is, and hopefully they have the time, a lot of doctors don't these days, but a, a really good doctor will meet the patient in the waiting room and just maybe have some casual conversation walking back to the office. But during that con casual conversation, they're watching the entire time, they're observing the entire time for how that patient moves, whether they have to touch the wall to kind of stabilize themselves whether they feel nervous in putting one foot in front of the other. But you're absolutely right that nowadays, often that just isn't done.

Larry (20:39):

And even in hospitals, patients with disabilities, and especially those with dementia who cannot advocate for themselves are just, i, I hate to say it, but just ignored for most of the time.

Lisa Iezzoni, MD (20:57):

Yeah. it is terrible <laugh>. I, I just don't even know what to say. Basically my belief is that every single person in the American healthcare system needs an advocate with them at every possible time that an advocate can be there because you know, especially post pandemic with staffing levels falling in hospitals or staff feeling overburdened in hospitals, people do not respond to call buttons, you know? And so so it can take a while to be noticed that you have a problem. And so this is a very big issue, especially if people have significant mobility, disability, and can't even reach out to answer the phone. My best, my late best friend was quadriplegic, and he could not even operate a call button that the routine call button that's given to a patient. And so you can imagine what has to happen in a situation like that when he would go into hospitals, it was really hard figuring out how he would be able to call for a nurse.

Larry (22:24):

I'm a retired dentist, so let's not leave my profession out of this. A family member is confined to a wheelchair going into a dental office. There's no way to transfer that person into a dental chair so that person cannot get close enough to the dental equipment to be treated properly. And in our profession, I have not seen an office that makes accommodation for that.

Lisa Iezzoni, MD (23:04):

Yeah. So for people who are wheelchair users, and we tend to now use more active language, like use as a wheelchair rather than being confined to a wheelchair, because people use a wheelchair as a tool and they get around in it, but then they move in and out and they wanna move into a dental chair. And it's a huge problem. It's a huge problem. And it's why many people with disabilities do not get the dental care that they need. And bad oral healthcare can be life threatening. You know? It really can be. And so oftentimes now when I go to the dentist I go to an academic dental practice, which is in an ancient building, but at least they have one really huge room where I can ride my enormous wheelchair into it and it can tilt back, you know? And so I don't have to transfer into into a dental chair. But I think that that is absolutely a well known issue for people with disabilities that they do not get the dental services that they need with mobility disabilities, that they don't get the dental services

Larry (24:25):

In. In thinking about this interview, I, I thought back on my own practice and what I could have done should have done to accommodate people who rely on mobility devices.

Lisa Iezzoni, MD (24:41):

Mm-Hmm. <affirmative>. Yes. It, you know I, I, I guess I would ask also whether there were chairs that you think would have been easy for somebody to transfer in any case. You know, because it's only relatively recently that this equipment has been built. But it, well, relatively recently, no, for the last 20 years or so, I guess it's been built the, you know, the height adjustable exam chairs as well as exam tables. But I think that a lot of practices are small. And you're absolutely right. They, the staff needs to be able to circulate as well. Plus there's other equipment that they have to have in this space, and so it gets crowded. Mm-Hmm.

Larry (25:37):

<Affirmative>.

Lisa Iezzoni, MD (25:38):

Yeah.

Larry (25:41):

Let's talk a bit about the problems of independent living with a disability. Mm-Hmm. <Affirmative>, the people in your current project with Community Health Alliance.

Lisa Iezzoni, MD (25:51):

Mm-Hmm. <affirmative>. Yeah. Well, that that Community Health Alliance, it's a historical project. And so that group was in existence from 1992 and 96, but, so let me just talk in more general terms. You know, about the work, the research that I did for my Making Their Days Happen book that was a project that was, that I was fortunate to get funding from the Gordon and Betty Moore Foundation for, and in that project I did two sets of interviews. I interviewed people with mobility difficulties, who had such significant difficulties that they could not independently perform usual activities of daily living, like feeding, bathing, dressing, toileting, or basic mobility. I also interviewed personal care assistance, is what we call them in Massachusetts. But for example, where my late best friend lived, they were called Home Health Aides. They're called Home Health Aides.

Lisa Iezzoni, MD (27:03):

And so people who are not professionally trained in the sense that they don't have a professional degree, but they come in and they assist people with the most basic and intimate things that everybody needs to have done every day. And if they can't do them for themselves, they have to hire somebody else to do that. You know, the feeding, bathing, dressing, toileting. And so so one of the things that became really clear as I was doing the research for that project, in addition to the interviews, I did a policy synthesis looking at the policies relating to that home-based personal assistance services is that most people think that Medicare pays for that. Medicare doesn't pay for it. <Laugh>. And this kind of care, especially if you need it every week, can get really, really expensive. And, and so so if you start needing these services and you're not a person with many resources, you may need to have to depend on family.

Lisa Iezzoni, MD (28:30):

And a lot of people do. A lot of people have what are called informal CAM caregivers, which I always kind of cringe a little at the word informal because there's nothing informal about it. The only thing informal is that they're not being paid <laugh>. They're doing it out of love or friendship or kindness or generosity. But it's hard work, you know, it's still work. And so if you don't have family and about 15% of people do not have friends or family you have to figure this out. And it's very, very difficult to find these kind of supports or people who can provide personal assistance services, especially in rural communities. And especially in places where people can earn a lot more doing other things.

Larry (29:33):

One of the things I noticed about independent living, the things that we're aware of, transportation ramps to the home, grab bars and bathrooms. One thing I didn't even think of, and this happens when I visited senior living facilities, the smoke detectors are sound only for hearing. And there's a problem for people with hearing impairment.

Lisa Iezzoni, MD (30:06):

Yes. Well, that's why if you go to a hotel and are put into the disability access room <laugh>, you'll see that the smoke detector that they have on the wall also has a light, also has a flashing light. And so, because it realizes that you can't rely only on auditory information, you also have to rely on visual information. But it's absolutely true that for independent living, and again, let, let me just preface this by saying that a survey found that only 4% of Americans would want to go into a nursing home when they became unable to to perform activities of daily living. Only 4% of people, so the vast majority of people, even with significant disability, want to continue living in their homes and communities. And so my friend Michael, who who I've mentioned already a couple of times when he was forced to retire because his disease made him quadriplegic, he basically spent almost all of his retirement income buying a small little kind of one story long skinny house and researching for accessibility features. So putting in a bathroom that was big, that had grab bars everywhere that had a toilet that was the right height he also put in ceiling mounted lift devices, put in tracks for that. And so you know, his aides would be able to lift him using an automatic lift device. But that really takes somebody having the time and resources to do that kind of research, and most people don't.

Larry (32:14):

Do we have any idea of the number of people in the United States who require special services?

Lisa Iezzoni, MD (32:23):

Oh gosh, if I, if I took the time to look at my book, I could find it. It's, it's millions and millions of people. You know, again, about 75% of people get the support from kind of informal family friends. And then about you know, 25% have to get it from some other source. And typically that those are people who they hire specifically themselves. And that is the independent living principle, prizes consumer direction where the person hiring the home health aide is able to be the boss. So that aide, you know, say, this is what I want done, this is how I want it done. This is how I want you to do these things for me. So instead of having an agency supervise the aid the person does this themselves, but there are, everybody has their own preferences for this service because it is so intimate and everybody has their own circumstances.

Lisa Iezzoni, MD (33:43):

So that's why I basically wrote the making their Days Happen book after having watched Michael for, you know, a dozen years or so manage, he ultimately needed basically live-in support because of his level of of disability. But it was complicated and it was hard to figure out. And I wish I'd had a place that I could go to try to learn what needed to be done. And there certainly are going to be people in communities aging access centers, or I can never remember the right acronym, what the acronym means, but there are certainly, you know, the Office on Aging will have centers where people can go to get information about services. But it is complicated.

Larry (34:42):

Tell us a bit more about the book.

Lisa Iezzoni, MD (34:45):

So the book is basically told from two perspectives. It's told the per, from the perspective of the person with a disability, and then also from the perspective of the home health aide and the person with a disability. You know, I, I basically talk about what are the needs, you know, what are the kind of things that people need help with, and the intimacy of that. And and a lot just comes from that intimacy and the fact that you're opening your own home as the workplace for the worker who's coming in to care for you. And and then also from the worker's perspective, they're entering somebody's home as their workplace, and ordinarily they're the only worker there. And so it's not like a work situation where there are other people around. And so if they have a problem that they need help with, they have other people that they can talk to know they, they are there with a client by themselves in the bedroom, in the bathroom, you know, feeding the person.

Lisa Iezzoni, MD (36:06):

And so you basically need to have basic trust to be able to have a relationship like this where you can feel safe, physically safe, but also emotionally safe. And the safety is a really, really huge component. But one of the things that was really very interesting to me was that a lot of the people who were the consumers were the people with disabilities began to feel almost like these long time aides that they had relationships with were almost family members. You know, they got quite close to them. Whereas the aides often felt that they had to keep a little professional distance. So, because sometimes they would be asked to do things that were just inappropriate like do laundry for other family members, you know, that kind of thing. And, and so so it it was a very kind of emotional book to write because it's so basic. It's about basic everyday things that everybody needs to have done, and if they can't do it for themselves, and do they get it done by somebody else who would do it the way that they want it done.

Larry (37:53):

In, in preparation for this discussion, I listened to a previous podcast that you made, and there was a phrase that seemed to sum up everything that we just talked about and things we miss talking about. The phrase was quote, okay, what can I do to make that person's life better? Do you want to comment a little on that?

Lisa Iezzoni, MD (38:23):

Yeah, yeah. Basically, I think people are often really nervous when quote, dealing with somebody with a disability. You know, they see somebody like me in this big rehab power wh and they're kind of like scared or they just, they're, they're nervous about kind of what should they do? Because disability makes people nervous, you know, it still does. Even though it's something that across the lifespan almost everybody will experience some type of disability, even if it's just a temporary scheme injury, you know? And so the basic words that I think are most helpful is just to say to somebody, how, how can I help you? Or how, what can I do to be of assistance? And if people don't want help, they'll say, I'm fine. I don't need any help. But if people say, yes, I would like help, then it's always, I think, respectful and so deeply meaningful to the person receiving the help if you ask how they want it done, and you try to follow their instructions as best as you can. For example, my friend Michael, who I talk about all the time, liked his T-shirt tucked in a very specific way. You know, everybody wants their T-shirt tucked in a very specific way. And so if his home health aide could tuck in that T-shirt exactly how he wanted it tucked in, it would make him feel better. And so, even these little tiny things, I think can be helpful for people.

Larry (40:26):

Is there anything we missed that you'd like to talk about?

Lisa Iezzoni, MD (40:31):

I don't think so. For a conversation of this nature, I think you've covered a lot.

Larry (40:38):

Yes. And it was informative personally moving. Thank you. And I really appreciate your coming on specifically for seniors. And I think you've said some stuff that's gonna make a lot of the listeners feel a lot better. Thank you.

Lisa Iezzoni, MD (40:58):

Thank you.

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