The science of balancing safety and independence of older drivers has come a long way. Some key points from our podcast today with Emmy Betz (emergency physician-researcher) and Terri Cassidy (occupational therapist and certified driving rehab specialist) include:
- It’s no longer gouache to say “taking away the keys” – which sound punitive and risks infantilizing
- Instead the new lingo is “driving retirement”
- Driving retirement can be a process, similar to a harm reduction model, in which the activity is not eliminated all together but restricted to minimize harm: e.g. driving only during the day, or avoiding freeways.
- A JAGS randomized trial demonstrated that a free online tool that assess readiness to stop driving helped older drivers with the difficult decision about driving cessation.
- Often the work of the certified driving rehab specialist is to assess the older drivers goals, assess prognosis for driving, and help the family navigate discussions around driving cessation (hmmm…sounds like an approach to family meetings).
- There is a dearth of Certified Driving Rehab Specialists: 12 for the entire state of Colorado!
We learned this and much more, and I had a great time making engine noises singing the Woody Guthrie song “driving in my car.”
(A to Z – under driving)
An Advance Directive for When Driving Becomes Unsafe
ADED (Association for Driver Rehabilitation Specialists) https://www.aded.net/search/custom.asp?id=2046
Eric: Welcome to the GeriPal Podcast! This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, who do we have with us today?
Alex: We are so thrilled to welcome back to the GeriPal Podcast Emmy Betz, who’s an emergency physician and researcher at the University of Colorado. Welcome back to the GeriPal Podcast, Emmy.
Emmy: Thank you. Awesome to be here.
Alex: And we are delighted to welcome Terri Cassidy, who’s an occupational therapist and, ding-ding-ding, certified driver rehabilitation specialist. And we look forward to hearing about that and what that means. Welcome to the GeriPal Podcast, Terri.
Emmy: Thank you so much for having me.
Eric: Okay. We’re going to be talking about driving and older adults, and also in the palliative care population. Because I don’t think we think about that so much in palliative care, but we do in geriatrics. But I believe before we start, somebody has a song request for Alex. Is it you, Emmy?
Emmy: It is. Yes.
Eric: What’s the song?
Emmy: I just forgot the name of the song… [laughter]
Alex: Pink Cadillac by Bruce Springsteen? [laughter]
Emmy: I mean, I thought about Fine Young Cannibals’ She Drives Me Crazy, but … [laughter]
Alex: Oh, that would be good. I like that song.
Emmy: I think you picked an old classic, though.
Alex: Yeah, it was a Woody Guthrie, Take Me Riding in My Car, Car. There’s so many songs that would be appropriate for this podcast. I love Asleep at the Wheel; it’s the name of the group. They have some great, great songs.
Alex: But this one is by Woody Guthrie. This is a classic. Take Me Riding in the Car. I’ll play a little bit over here. It’s kind of fun.
Eric: That is the first time I’ve heard Alex … What’s the song terminology of going “brrr”?
Alex: I have no idea. [laughter]
Alex: I don’t know if it has name. [laughter]
Eric: Well, Terri and Emmy, thank you for joining on this podcast. We’re going to be talking all about driving: in particular, driving and older adults. Love to talk about also in the serious illness population. How did you both get interested in this as a topic? I’m going to first turn to Emmy.
Emmy: Yeah, so I’m an emergency physician. I don’t practice clinically in outpatient settings, and often the folks I’m seeing are there for other kinds of issues. So I didn’t get into this because of lots of car crashes. I’ll just say that.
Emmy: It was more from a perspective of thinking about in the injury prevention field, how we’ve done such a great job with teen driving, and really reducing injuries and deaths in the teen population. And I started thinking about, “Well, what do we do with older adults?”
Emmy: I admit, when I first started thinking about this, it was in the, like, “How do we get people off the road? They’re dangerous.” And I have had a complete 180 since. And so really recognizing the importance of mobility for health and healthy aging.
Emmy: Then I love what a tough topic it is. I think I’m really drawn to hard conversations. So then it’s just been a really fun area to work in.
Eric: For those of you don’t know, Emmy was on our podcast back in 2018 … man, pre-COVID times. Weren’t those the days?
Eric: But unfortunately, it was the hashtag #ThisIsOurLane podcast about firearm safety and dementia. So Kurt will have a link to that in our Show Notes. But a lot about safety around older adults and different things, whether it be firearms, driving; is that right, Emmy?
Emmy: Yeah, 100%. And how do we help people make decisions that are right for them and support their lifestyles, but also support health and prevent injuries?
Eric: Yeah. Interesting; both of those are about the safety of the older adult, and also the safety of others.
Emmy: [inaudible 00:04:30]
Eric: Because it’s not just my own safety that matters with both of those decisions. Terri, how about you? How did you get interested in this?
Emmy: Yeah, more from the rehabilitation side. I’ve worked in hospital settings as an occupational therapist, inpatient rehab and outpatient rehab. Initially, it was just because there weren’t really answers for my patients.
Emmy: I was seeing people in the hospital setting, saying they had had a massive brain injury. “When can I get back to driving?” Or had a stroke, and we didn’t have a lot of good answers. And so really started investigating that.
Emmy: Ended up starting a program, outpatient at our hospital at the time. But then once it was open, started seeing a lot of other populations: not just our own hospital population, but a lot more just community members calling with concerns about driving. “Do you guys do this?” And so we started doing all kinds of things.
Eric: Yeah. Were those people self referring, or family members calling you asking?
Emmy: It really depends on the reason that they’re coming. Often when there’s a cognitive concern, it’s a family member that is calling saying, “I just want to make sure my mom should still be driving after this happened, or after this diagnosis.”
Emmy: We also have older adults who call because they need clearance to get back to driving for some other reason.
Eric: Does anybody ever call because they’re just worried about their driving?
Emmy: Interestingly, not very often.
Eric: That’s what I would’ve assumed.
Emmy: I’ve had people call … This just lovely gentleman in his 80s and said, “I think I’m doing fine, but I just want to make sure.”
Emmy: That, to me, is the ideal checkup-type situation. And thankfully, he did do fine.
Emmy: But occasionally people just want to make sure. Just good stewards of the road, they want to make sure they’re not creating issues for anybody else.
Eric: And when we think about this; again, we’re going to be talking a lot about specific populations like older adults.
Eric: My son right now is 13. I’m definitely scared of when he’s going to be driving soon. Why focus on older adults? Are they at higher risk? What do we know about that population?
Emmy: Yeah, I can jump in; then I certainly welcome Terri’s comments, of course, too.
Emmy: I think the way I think about driving and aging: we do see increasing crash-related death rates over 70 to 75. But a lot of that is because older adults don’t do as well after injury, because of physiologic changes. If they’re in a major car crash, they’re going to have more long-term complications probably than a 20-year-old would.
Emmy: There’s good research showing that older adults who drive, if they pose a risk, it’s mostly to themselves and not the people around them. So that if people only take away one thing from today, it’s that we need to get rid of this stereotype as old people being a menace on the roads. They’re really not.
Emmy: But we know that physiologic changes with aging, like decreasing night vision and so forth, as well as medications, as well as medical conditions, can all affect whether you can drive. If you can turn your head to look behind you, if you can see the signs, if you can remember where you’re going, all of those things. Those things do just accumulate with age.
Emmy: But driving can also be a problem for someone in their 20s with a head injury. Or somebody who has other physical cognitive problems at any age. It’s just that those problems, I think, become more common as people grow older. That’s why we really think about it in the older population. That’s, at least, the way I think about this.
Eric: Terri, anything to add?
Emmy: Yeah. I would really agree. I think in general, the research shows that older adults have very good driving habits compared to younger drivers. Less risk driving, risky behaviors, drinking and driving, things like that.
Emmy: Yeah, crash rates do increase particularly after the age of 80. And the reasons for that are probably a lot of the things that Emmy has mentioned. So I think there are, yeah, multiple factors. But there are a lot of reasons that older adults end up being looked at more closely on this driving topic.
Alex: Can I interject with a question here? Emmy, you said earlier that you like addressing issues that are so tough, and that you’re thinking this has really evolved. I think we’re going to get to your JAGS paper, but I think you set it up beautifully in the introduction there.
Alex: There are some really positive aspects of driving, and continuing to drive, for older adults. I wonder if you could talk about those, because that’s part of what makes it so tough, right?
Alex: It’s like as a doctor talking about … We say “taking away the car keys” when it’s time to stop driving … is hard. Because for so many of older adults, it’s a way to be independent. It’s part of their social health. I wonder if you could say a few words about that, and Terri as well. Yeah,
Emmy: Yeah. Some of the way the reframing I think about is people talk about, instead of taking away the car keys, it’s an older adult deciding when it’s time to hang up the car keys, right?
Emmy: That’s a change in who’s making the decision. People talk about driving retirement as a process instead of driving cessation, because it’s a maybe gradual process or maybe not all bad.
Emmy: But in the pre-COVID area, I would say to people, “Imagine if suddenly you couldn’t drive today. Your life would fall apart if somebody said, ‘You have to stop now.'” I think things have changed with work from home and delivery and all of that stuff.
Emmy: But still, driving and mobility is incredibly important for all of us. When we think about social interactions. When you think about getting your groceries, going to doctor’s appointments, going to religious services, if that’s important to you. Thinking about transitioning from driving to another form of mobility, it’s just really important that people know how to still meet those needs.
Emmy: We did see some interesting things in COVID, with one study we were doing with older adults where a lot of people said, “You know what? I’ve figured out how to get groceries delivered. And I love it. And I’m maybe less worried now about what will happen when I stop driving.”
Emmy: So maybe that was a good thing. But I think then the other factor in this that makes it complicated is the decision for someone in Manhattan might be very different than the decision for someone in, like, rural Wyoming.
Emmy: Because if you’ve got other ways to get things delivered or you have good public transportation or you have a lot of family around, that’s a very different kind of calculus than if you live on your ranch and there’s no way to otherwise get to town, and there’s nobody else around. So your risk of hitting a kid or hurting someone else is very low.
Emmy: So that older person or person with maybe terminal illness or developing impairments, it might make sense for them to just keep driving because they don’t have a good replacement. That’s where it really gets to this individual risks and balances, individual situation.
Alex: Yeah. Terri, I wonder if you could comment on that. I’m particularly interested in, have you told people that it’s probably safer for them to stop driving and seen the grief and loss that they experience when they hear that? It’s like breaking bad news in palliative care.
Emmy: Yes. And I’ve been to some presentations that use that same breaking bad news model for having these driving conversations, as are used in palliative care. Absolutely.
Emmy: I think so much of it for a lot of clients comes down to for them, driving isn’t just a means from getting from A to B. For a lot of these things, there are some great solutions out there, and that is fantastic for a lot of people.
Emmy: Honestly, I think of it as generational. For a lot of adults in their 70s and 80s today, driving is deeply part of their identity. So I think acknowledging that is a good first step.
Emmy: Not only is it just about, “How do I get to this place?” Because as an occupational therapist, we want people to stay engaged and function. So we’re trying to help replace the transportation option.
Emmy: But really, that piece of this and to a lot of people, I think it shifts that things are changing in their lives. This is a very outward sign that they’re entering a new phase in some extent in terms of their health.
Emmy: Yes, I’ve seen a variety of responses, I have to say, when having that discussion. Because that is something that we certainly do. My favorite was a gentleman who said, “So you’re saying I need a chauffeur.”
Emmy: And I said, “Yes.”
Emmy: He said, “Great.” Like if only everyone had that option.
Emmy: But for a lot of people, it does vary between anger and sadness and all of those pieces. We’ll talk more about this, but I think that’s where it can be helpful to have that not be a family member giving that news, or making that decision. Because how that is approached can have lasting effects on relationships, unfortunately.
Eric: Yeah. We’re going to go into how to talk to patients about this, because Emmy, you’ve done some research on it.
Eric: But before we jump into talking to your patients about driving retirement cessation, let’s talk about what is the role of the healthcare professional in this at all? And what should we be doing as far as assessment? Is this our role? We have the DMV at every state.
Emmy: Yeah. The DMV. I mean, some states have a DMV process that is maybe more thorough. But I think a lot of states, there’s not really thorough retesting. And I think relying on the DMV is maybe not always the answer: I think especially for people with maybe complex medical problems, medication, et cetera, all of that.
Emmy: So I think that yes, that’s certainly an option. And in theory, that’s the system that should be regulating a lot of this. But this is where I’m going to fangirl for a second on occupational therapy.
Emmy: I had no idea, I’m just going to admit, until one day I got to go shadow and see a driving assessment, particularly the CDRSs, as they’re called, the real driving specialist-
Eric: What’s a CDRS?
Emmy: Certified Driving Rehabilitation Specialist, right?
Emmy: You got it. [laughter]
Emmy: They do a really comprehensive evaluation that includes visual fields and cognitive testing and reflexes and all kinds of things.
Emmy: The key thing is that much of it can then lead to rehabilitation so that the trained specialists can identify, “Hey, these are some challenges. These are adaptive devices or strategies for retraining or things so that you could still be safe.”
Emmy: Whereas the DMV is, you get a license or you don’t, as opposed to really the treatment part of it. And I’m sure Terri can say a lot more about that.
Emmy: Having said that, I think we need to recognize that the gold standard, thorough OT assessment is not a reality for a lot of people, because of there aren’t enough of them, because of insurance might not cover it, and so forth.
Emmy: So I do think at the bare minimum, healthcare providers who are caring for, interacting with older adults, should at least be aware of driving, including how new diagnoses or new medications might affect it, to be able to give people at least some guidance about what to watch out for, even if it’s just the basics.
Emmy: If you are feeling dizzy, if you are blacking out, if you can’t feel your right leg anymore because you had a stroke, you might need to see a specialist or you might need to stop driving. Yeah.
Eric: Let’s say I have a panel of older adults that I’m seeing, or a palliative care outpatient clinic. Are there red flags that I should be thinking about that should make me think, “Maybe I should dive into this driving topic a little bit more with my patient?” Or should it just be age? Everybody above 65, 75, 85?
Emmy: I’m going to say a little bit of both, then I want to hear what Terri says.
Emmy: But I do think there’s an advantage to bringing it up with everybody above a certain age, because then you normalize the conversation. This is something we’ve heard from people: that if you just bring it up every year as part of your routine physical, like, “Any concerns about driving?”
Emmy: “Okay, great. We’ll talk about it next year.”
Emmy: It becomes something they’re thinking about. Certainly, any crashes or recent near-crashes are a red flag. Then I would say any clear deficits in thinking, vision, physical mobility, big new diagnoses, those; certainly cognitive changes, because that’s a really big one in terms of risk.
Emmy: I think any of those potentially could be red flags to ask about: “Okay, well, how are you getting around? Are you driving? Does someone else drive you and so forth?” But I don’t know. Terri, what would you say?
Emmy: Yeah, no, I agree. I agree with all of it for sure. Certainly my bias is that healthcare professionals really do have a role in this discussion. And I will often talk to clients about the fact that … To me, it used to be a family decision, a family topic. “We’re concerned about Mom, we’re just going to keep it within the family.”
Emmy: And I think when we look at the population, looking at within the next 10 years, a quarter of the drivers in Colorado are going to be over the age of 65.
Emmy: It becomes more of a public health issue to me, and actually something we need as a culture to find solutions to, and not just place that burden on each individual family: this idea that we’re all going to end up there if we live that long.
Emmy: So I think shifting that a little bit is what helped me do a lot of the education that I do to therapists and physicians, just to have it on their radar. Just like Emmy was saying, just bring it up and make that an okay conversation to have.
Emmy: I completely agree in terms of the red flags. To me, it’s more about function than age. So it’s really going to be, are there some cognitive concerns? Because to me, the cognitive concerns are the ones that the patient is not likely to self identify.
Emmy: You know, somebody who’s had an amputation may ask, “Okay, what about driving?” Or even on the vision side, they’re more likely to recognize that there may be some danger here or some alternate methods.
Emmy: But with cognition, that’s often not self-identified. So that’s a piece that I think is important for providers anywhere along that process to be asking about driving. Just bringing up the topic is honestly the first important step, I think.
Eric: Are there important questions we should be asking when we bring it up? Is there a screening tool that we can use, or just questions that you ask older adults around driving safety? “How are things going?”
Emmy: Emmy’s done research on that part, so I’ll let you talk about that position.
Emmy: It’s tricky. We and many others have tried to come up with a short, validated screening tool. And there’s not a perfect one, I’ll just say.
Emmy: I think certainly just even asking, “Are you driving?” “Do you drive?” Maybe not, “Are you still driving?” because that’s kind of offensive, maybe a little bit, but still a part of it.
Emmy: Even just asking, “Are you driving? Do you have any concerns?” But then asking, “Have you any crashes or near crashes? Do you ever forget where you’re going when you’re out doing something? Have you gotten any police tickets?” Then if the family’s involved, things like, “Are there new scratches on the car, dents and those kinds of things?”
Emmy: I think it’s important to recognize that many primary care providers don’t have the time to be doing really comprehensive kinds of assessments. So I think opening up the conversation, then seeing where it goes: I have heard lots of stories of people just being very surprised.
Emmy: I remember one where a gentleman who’d had a stroke and couldn’t use his right arm anymore … maybe his right leg as well. No, I think it was just the arm. And the primary care provider had assumed he was no longer driving, I think. And then found out at the appointment; the wife was there, too: and no, it turns out he was still driving.
Emmy: Not only that, he actually had a stick shift and his wife would shift for him every time that he needed to shift.
Alex: [inaudible 00:22:19]
Emmy: I mean, I think people do a lot of really amazing, adaptive kinds of behaviors or something called co-piloting: where really the passenger is the one telling the driver where to go. So just starting to unpack what’s happening in an individual’s life can maybe then lead to more conversations and assessment.
Alex: Ken Covinsky always likes to say, he’ll ask his patient things like, for example, “Have you had any near crashes?” The patient will nod their head No. And their patient’s wife will be standing behind them going, “Yes, yes, yes, yes, yes.”
Alex: So I’m sure there’s some element of difference between what the patient might say and what their caregiver might say about this issue. As is the case for many issues in geriatrics: some of the time, not all the time. I’m sure there’s some role for getting, as you say, multiple perspectives on this issue. I don’t know.
Emmy: I think also part of that conversation can then be planting the seed for what comes in the future.
Emmy: If you think the person’s fine and they don’t have any impairments or they don’t have concerns; just saying, “Okay, well, if something were to happen, would you have another way to get around? Is family around?” To start them thinking about, maybe it’s just if you got sick or you broke your leg.
Emmy: But it’s also five years down the road, 10 years down the road, what’s going to happen? To help people mentally prepare for that transition, in the sense that we’re probably all going to have that transition.
Eric: Yeah. I love that idea. We talk a lot about planning for the future on healthcare directives or financial issues. Recognizing that mobility and driving is incredibly important to a lot of people, but we don’t really think about that in our planning for the future.
Eric: And sometimes we know things are going to get worse. Somebody who’s older, maybe just diagnosed them with very mild dementia. Are we starting to think about planning for the future in that regard?
Eric: That too, what do we know about dementia and driving?
Emmy: Yeah. Terri, I’m curious too. I mean, we know dementia and driving is probably one of the biggest risks. Because again, people forget where they’re at and they get disoriented.
Emmy: I’m curious, Terri, what you see in your evaluation.
Emmy: Yeah. It’s interesting because that’s probably one of the most common diagnoses that we see people for: or that’s why they’re referred to us. Sometimes on the mild side, sometimes early in the process, and sometimes further along.
Emmy: I would say one big thing, though, is I try to not just make any decision based on a diagnosis, perhaps obviously. But we’ve had people come say, “Oh, my physician told me to stop driving because I have this diagnosis.” Then they still ended up coming to see me. And I send my report back to the doctor, just to be able to have that dialogue.
Emmy: But we do see individuals with beginning stages of cognitive impairment where they pass our evaluation. We’re often making recommendations such as not driving at night, not driving on the interstate. Things we can help facilitate, with the physician putting that on their driver’s license, so there can be restrictions.
Emmy: To me, I love the process of being able to … back to what Emmy was saying about in terms of a driving retirement approach. That if we can see somebody early enough to have that discussion, that at some point you’re going to need to stop driving.
Emmy: Just the prognosis for this diagnosis is, if that’s the way it is, my goal is to help you decide when that time is going to be. We’ll do an assessment today, make some recommendations, then often have that person come back in six to 12 months is often what we recommend.
Alex: Kind of like the harm reduction model. Go ahead, Eric.
Eric: And Terri, is this something any occupational therapist does? Or is this something we have to find a driving rehab specialist?
Emmy: Yes. Good job.
Emmy: Yes. Thank you, that’s a really good question. So there is certainly a specialty of driver rehabilitation within occupational therapy. There’s a National Organization for Driver Rehabilitation Specialists. Not everyone that’s in that organization is an OT, but primarily. There is a resource guide on their website in terms of someone trying to find a professional who is a CDRS. I can get you guys that information.
Emmy: But basically, I feel like occupational therapists have a lot of the background skills to be bringing up this topic and to be doing a lot of the in-clinic assessments. I feel like a lot of times I wouldn’t want to make a final decision without going over this part. Taking a client into the car, I feel like is where you really need the specific training as a driver rehab specialist.
Eric: Are there many driving rehab specialists? I know at the VA, we actually send our patients at San Francisco to Palo Alto, because that’s where the driving evaluations are done and the rehab is. Is it common? Is it easily available?
Emmy: There’s not enough. Let’s say that. I don’t know the numbers; let’s just say in the State of Colorado, I think there are 12.
Eric: 12 hundred? [laughter]
Eric: 12. 12. Just the number 12.
Emmy: 12 of us that are certified driver rehab specialists. We also have-
Eric: What percent of drivers will be over the age of 65, you said?
Emmy: About 25%. Yeah, the numbers don’t work out. And that’s where we’re doing a lot of work to partner.
Emmy: Within my company, we partner with hospital-based and outpatient community-based occupational therapists to do more of that initial screening and triage. Is this a clear yes or a clear no? Or do they really need to go on and go behind the wheel and do a full evaluation?
Emmy: We, a couple years ago, did a survey. I think it was 2014, but we did a survey of driving rehabilitation specialists in the U.S. I can send you guys the link for the Show Notes if you want.
Emmy: But I mean, there were some states; back then, at least in Oklahoma had no programs, for example. No specialists. Then some states have a lot, or relatively a lot per population.
Emmy: I think what Terri’s saying about the tiered approaches is important, because people may not be able to get to one. Then some may not take insurance, and it might be an out-of-pocket cost, which maybe some people then won’t be able to afford and so forth.
Eric: Does Medicare generally cover driving rehab specialists? Or, do people … No, I see a shaking no-no.
Emmy: Generally not. My general answer is that driving is usually not considered medically necessary.
Emmy: In general, CDRSs in private practice, it’s usually private pay.
Emmy: Sometimes in terms of hospital based: that’s where often we will work with OTs as well if they’re addressing other things: the vision screen, the cognitive screen, all those things can be part of an OT plan of care. And then they can transfer that information to the specialist. But in terms of the whole thing being covered, it’s pretty rare.
Emmy: And I remember at least a couple years ago, one insurance company … Terri, correct me if this has changed … had started to cover them. But only if someone had been in a crash and then needed an evaluation, which seems like a really not good way to do it.
Emmy: Yeah. There’s a lot of questions. I mean, it seems like it would make a lot of sense for car insurance companies … And there is one. I’ve gotten a number of clients, small number who say, “When I turned 80, my insurance company said I had to do an evaluation.”
Emmy: That’s rare. But kind of an interesting approach. Eric, you mentioned the VA. That is something covered by the VA. We recently got in network with the VA because there’s just one driver rehab specialist in Denver, and it’s about an eight-month waiting list to get in to see her.
Emmy: Trying to navigate some of these processes of how we can help relieve that is tricky also.
Eric: What I’m hearing is it’s not just you about saying somebody is safe or unsafe driving. You’re also trying to see how you could help them with the rehab part, right?
Emmy: Ideally. Yes. Right. And that does depend on the population and the reason they’re coming. For example, something, when you were asking about red flags, that crossed my mind is just neuropathy.
Emmy: We see a lot of people who have neuropathy for whatever reason. And it’s making their driving unsafe, just their pedal selection. But they could shift to using their hands and we could teach them how to use hand controls, where they feel a lot more confident and they are able to stop when they mean to stop. So there’s a lot of positives to that.
Emmy: Sometimes there are adaptive equipment solutions, particularly if there’s a physical impairment. But sometimes it is honestly just having that discussion, building the awareness, talking about, “You know what? You’re going to be safer to get to that destination by making a number of right turns instead of an unprotected left turn.” So some of it is education around driving habits and ways of getting places also.
Emmy: The other thing I’ll mention, though, is that from the driving evaluation, there may be driver rehabilitation things that we recommend. But there’s often other types of rehabilitation that we’d recommend.
Emmy: Sometimes it is, “Go see your eye doctor. You currently don’t meet the state standard, but I think you could, if you filled your glasses prescription.” So a lot of times it’s a referral back to their primary care, to a specialist-
Eric: Hearing, vision, medications taking them off the Benadryl that you’re using for sleep or the benzos.
Eric: Emmy, I know you’ve done work around how to talk, both from the patient and family standpoint, what they want. Right?
Eric: Also from the provider standpoint. Can you summarize what we know right now about how to talk to patients about this? What are they looking for? What should we be doing?
Emmy: Yeah. First I’ll maybe start with the patient side, and then the provider side, which of course don’t always match up perfectly.
Emmy: But I think what we’ve heard from patients is they want time to prepare. They don’t want it sprung on them. They want to maintain control of the decision, if they can. They want to be the one deciding when it’s time.
Emmy: They want a reason. We hear this a lot of putting it in context. It’s not that you are a bad driver, it’s that your neuropathy is making it harder for you to drive. And so that they feel like it’s linked to something instead of just an age.
Emmy: And they want acknowledgement that it’s a hard decision and that it’s emotional. That may feel like a minor point, but I think we get it, in any delivering bad news or talking about serious illness.
Emmy: Just even acknowledging, “I know this might feel hard,” or, “Driving may be really important to you for a lot of reasons, so let’s talk about how we get through this.” Just to acknowledge that piece of it.
Eric: What do they think about the role of the healthcare provider, like the NP or the doctor?
Emmy: Yeah. I think that that varies, when there actually is an example of a driving directive that you can fill out. And I think part of it is identifying who you trust to make the decision.
Emmy: Because for some people, that might be their family member, their daughter. For some people, it might be their doctor, especially people who have a more traditional relationship where they really defer to the healthcare provider judgment. Some people are going to say, “My doctor’s never been in a car with me. What does she know about my driving?” So I think it’s variable.
Emmy: On the doctor or healthcare provider side: I think we’ve heard, reluctantly, people see that they have a role in this. They hate it. I remember one geriatrician told me it’s literally his least favorite part of his job out of everything he does.
Emmy: So I think many people feel like they don’t have the time or the resources to do it. They don’t know where to send people, and they don’t know what to do next.
Emmy: I think we’ve heard a lot about things like, “How do you embed it in preventive wellness visits?” Not that everyone has those, but how do you embed it in other things? Or have electronic health record prompts so people remember to ask it? They know where to send people. How do you set up an easy system for referring folks to the right place and so forth?
Eric: Well, why do you think doctors hate this so much? Because we do a lot of things where we don’t have a lot of time.
Emmy: Yeah. I think because … I think-
Eric: We’re taking something away?
Emmy: Yeah. And I think inside … Well, in some cases you just know you should not be driving. Clearly, somebody with very significant deficits or something. Or you shouldn’t be driving at least until you have some adaptive rehabilitation.
Emmy: But I think it’s because you’re taking something away; you’re being the bad guy. I can’t remember if it was Terri or a different OT who once said to me that they accepted part of their job was to sometimes be the bad guy.
Emmy: The person who wouldn’t listen to their healthcare provider, so they go see the expert. They get in the car with them and then they will finally accept, “Okay, I have to stop.” Because I think it is a sad thing to have to do.
Emmy: Yeah. I think I get why. Your patient’s going to be angry and blame you and be mad at you and you don’t want to ruin that relationship.
Emmy: But I think there are ways to do it where you don’t ruin the relationship. But I think that’s what people are worried about.
Alex: I wanted to ask here in terms of the language that you use and how you appeal to them to make these decisions: to stop driving, to retire, to drive less, to be more careful. What language you use?
Alex: I could imagine you could appeal to their own sense of safety, and also the safety of others.
Emmy: I have a quick comment, then I’ll turn it to Terri.
Emmy: I think it depends on the person. I think there’s the type of person who’s maybe a little more anxious or careful in general, and worried about the world around them. They might respond well to the, “Well, my goodness, can you imagine? How would you feel if you hit a child in your neighborhood?” Right?
Emmy: And that anxiety will prompt their behavior change. For others, it might be sneakier approaches like, “Well, Mom, your grandson’s going to college. What if you gave him your car this year? Because he really needs a car, and-”
Emmy: “… isn’t that a great way-”
Emmy: Yeah. It’s more about passing something on, helping someone else. Some people might respond well to financial arguments of, “You’re spending this much money on the car and the registration, and you only drive once a month.” So I think it depends.
Emmy: But I’m curious: Terri must really tailor her counseling to folks. She probably does this more often.
Emmy: Well, in a little different capacity, but yeah. I agree though, it does depend a lot on the person. We spend three hours at this driving evaluation; it’s a three-hour session. We do build a relationship, even though we often only see that person one time. By the last half hour of that session, we have some idea of maybe how they’re going to receive the news that we’re telling them.
Emmy: Of course, it’s easier if the news is not cessation. It’s easier if the news is, “We have these recommendations for restricting your driving.” And then often, at least in our office, people are like, “Oh, good. At least I can keep driving.” So that part of no night, no highway; I mean, sometimes it might be a five-mile radius from home.
Emmy: We just saw somebody recently where the recommendation was no roads over 35 miles an hour. So some of this can be pretty restrictive, but we try to, of course, frame it in the sense of what you’ll still be able to do within those restrictions.
Emmy: Yeah. For clients, for us, because we’ve just done this thorough assessment of driving, that is the reason they’re coming to see us. Well, I’ll back up.
Emmy: In the beginning. I will ask, “Why are you here? What brings you here today?” And the ones who just point across the room at their daughter-
Emmy: … and say, “Her. She’s the reason I’m here today.” That gives you a tone for how-
Alex: Things are going to go.
Emmy: … good the end discussion may go. I generally start with, “I have concerns about your driving. This is worrisome, and these are the reasons. This is what we saw today.”
Emmy: And honestly, how much detail I go into depends on the person and how receptive I think that they will be to that detail. They do always get a written report to review all of those pieces as well.
Emmy: But what I’ve really been amazed by is the families. We try to involve the family as much as possible. They don’t come in the car with us, but they’re often there for the initial in-clinic portion, then for the discussion at the end.
Emmy: What I’ve come to realize is that in some sense, we are really providing a space for the family to have this discussion. Oftentimes there’s an adult child who has all the reasons in their head, and either haven’t expressed them or that they haven’t gotten through. So together we’re able to navigate that better than I would be by myself. It’s really impressive.
Alex: You assess their goals of care, you establish what the prognosis is, then you have a family meeting. Wow. It sounds a lot like palliative care.
Emmy: That’s interesting.
Alex: Eric, we have nine minutes left. We still have several things we want to get to. Go for it.
Eric: I want to ask Emmy: Emmy just published a paper in the Journal of American Geriatric Society on a decision aid around this. Can you describe what that is?
Eric: And how does this fit into what we’re talking about here?
Emmy: Yeah. I mean, I think this gets to the idea of how do we support people in making a decision themselves ideally, instead of us telling them when to do it?
Emmy: Decision aids are used for lots of things: cancer treatment and other kinds of decisions where there might be multiple options. In this case, with NIH funding we enrolled a cohort of 301 older drivers who did not have significant cognitive impairment.
Emmy: We wanted people who were still driving; we weren’t weighing in on whether they should stop or not. We wanted people who were thinking for themselves what they should do. Then we randomized them to view an existing decision aid, or just a control website with driving information.
Emmy: And the decision aids, they have questions about your values and your preferences and the other things that go into a decision. Not just the risks and not just the benefits, but also like, what does driving mean to you? How open are you to various kinds of things?
Emmy: And we found that in this group, which turned out to, unfortunately, more than we wanted it to, be more white and more highly educated than we had hoped in terms of the recruitment. In this sample, it looked like those who had the decision aid had improved decision outcomes: meaning they felt better about the decision. And most of them did decide to keep driving.
Emmy: But we know when you make a decision that feels good to you, you then feel better about it moving forward, and you’re more likely to act on it. Right?
Emmy: So we won’t have ambivalence about, “Should I buy this car or this car? Should I take this job or this other job?” If you decide and it’s the right decision, then you feel happy. So part of this is how do you support people in making the decision that’s right for them?
Alex: Yeah. If they’re activated to come to this realization themselves and have some confidence that their decision is informed, then they’re more likely to take this well, have better outcomes than if, say, a primary care doctor or certified driving rehabilitation specialist were to make that decision.
Emmy: Yeah. I think these tools, even if they don’t work for everyone; they certainly don’t weigh in on whether someone should or shouldn’t drive in terms of a skills assessment; I think decision aids, like the advanced planning directive that I mentioned, they can be conversation starters for a family or for a care provider to say, “Hey, let’s look through this together. Let’s start thinking about what this means.”
Emmy: Can I mention something else?
Emmy: I know we’ve mostly talked about aging. But the palliative care connection, I think, is important too. Another fangirl moment for the OTs out there.
Emmy: Recently I saw a patient who ultimately had a diagnosis of ALS, but had been trying to get a diagnosis for quite a while, and had had declining function, had actually driven from a different part of the state with their partner. I didn’t even ask how they had gotten there. I just assumed that the patient was not the one who had driven.
Emmy: Following up later, they stayed in our observation unit overnight to seek physical therapy, occupational therapy, get hooked up with case management, the functional side that they really needed. And lo and behold, in the OT note was a comment that the patient was still driving because their spouse was legally blind and couldn’t drive.
Emmy: And it just hit me: this person just drove from across the state because they needed the diagnosis and they needed the help. And I didn’t even think to ask it. When of course, with their declining function, it’s going to be inevitable that they have to stop at some point.
Emmy: So I think, again, it really is not just age, it’s function. Even the OTs, even if they’re not trained as driving specialists, are perhaps more trained to just be thinking about all these functional activities of daily living in a way that we aren’t, that other providers might not be.
Eric: Yeah. Then when we think about the palliative care population, people with serious illness, cancers that may be progressing, maybe we’re starting them on medications like opioids or benzos.
Eric: Should we be thinking about that population in any different way? Or thinking about how to talk to them in a different way? Terri, your thoughts?
Emmy: Specifically, yes, I guess.
Emmy: I do think it should enter that picture. Short story on my side is I did just work with a woman who has a terminal diagnosis. And she said, “They say I have six months. Driving means everything to me. I can’t use my foot anymore for gas and brake. I want to be driving with hand controls these next six months.”
Emmy: And honestly, I saw her that one time. Her status has probably changed. I’m not even sure we’ll get all the way there, but in terms of just her being in the car, being tearful, saying, “You have no idea how much this means to me.” To me, that’s just beautiful.
Eric: I got to say, I love this podcast because I never really thought about neuropathy and driving before. And man, I see a lot of folks with lower extremity neuropathies.
Eric: And I just think, “Oh, maybe I should have asked more and explored that.”
Eric: How about you, Emmy? Any other thoughts on that palliative care population?
Emmy: I think that’s a beautiful story that Terri just told. And I think it speaks to, again, as we think about risks and benefits for any one individual that we shouldn’t look at this as just a, “I’m taking away the keys or not.” But that we’re having conversations with individuals and families about what is healthy, which is not just injury prevention, but is emotional health … certainly community safety, too.
Emmy: But especially if somebody can continue doing an activity that means a lot to them, and do it in a way that’s safe, I think that’s a good thing. And we should be supporting folks, then supporting them if they eventually transition to other kinds of mobility.
Eric: I want to thank you both for joining us. But before we leave, I think we have Alex doing a little bit more of brrrr. Is that right, Alex?
Emmy: So talented.
Emmy: I love it.
Eric: That’s funny. Alex, well done. Terri and Emmy, huge thank you for joining us on this podcast.
Alex: Thank you.
Emmy: Thank you.
Emmy: Thank you.
Eric: And thank you Archstone Foundation for your continued support and to all of our listeners.