Aging Matters radio show host, Cheryl Beversdorf, interviewed Mary Tinetti, MD, Gladys Phillips Crofoot Professor of Medicine, about Patient Priorities Care, an approach to aligning patients’ health care decisions and treatment plans with their individual goals and preferences, rather than relying only on medical guidelines or treatment protocols.

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00:00 Dr. Mary Tinetti: We know that three out of four older adults, people 65 and older, have at least two or more chronic conditions. When you start accumulating multiple conditions, which most older adults have, if you try to treat each disease, you can make another disease worse. Patient priorities care is identifying what each individual wants from their health care in a way that can inform decision-making, and then health professionals of all types use those priorities in their decision-making rather than just treating each of their individual diseases.

01:02 Cheryl Beversdorf: Hello and welcome to Aging Matters, a program featuring aging-related topics of interest to older adults and their families. I’m Cheryl Beversdorf, your host. When providing health care, the usual approach for clinicians is to treat each disease separately following one-size-fits-all evidence-based practices rather than focusing on individual patient priorities. This approach emphasizes efficiency, adherence to guidelines, often at the expense of what matters to each patient. My guest today is Dr. Mary Tinetti, the Gladys Phillips Crofoot Professor of Medicine at Yale School of Medicine. She’s going to talk about a concept called patient priorities care in which patients identify and articulate their own health goals and preferences, which are then used to guide their health care decisions and treatment plans. She’ll also discuss how patient priorities care is being used by health care providers and how this approach is improving health outcomes for patients. So welcome, Dr. Tinetti, and thank you for joining me today.

02:13 Dr. Mary Tinetti: Well, thank you for having me.

02:15 Cheryl Beversdorf: Well, Dr. Tinetti, let’s get an overview. I gave a little bit of a hint in terms of what we’re talking about today, but it would be helpful for us to get more details from you about identifying what matters. This is the concept as I saw it as I was preparing the questions, identifying what matters, MyHealthPriorities. What’s the rationale, and why should health care providers use these health priorities when seeing patients?

02:43 Dr. Mary Tinetti: Sure, thank you for that question. So at its very simplest, what patient priorities care is it’s identifying what each individual wants from their health care in a way that can inform decision-making, and then clinicians and health professionals of all types use those priorities in their decision-making rather than just treating each of their individual diseases. Myself, along with a large number of older adults, their care providers and health professionals have developed this approach over the past 10 years. As you said, treating each disease in isolation really has multiple problems when you start accumulating multiple conditions, which most older adults have. We know that three out of four older adults, people 65 and older, have at least two or more chronic conditions. And in that situation, if you try to treat each disease, you can make another disease worse. So we found in studies that I did with the medical students several years ago that one out of three older adults in this country receive a treatment for one of their disease that could potentially harm another disease. Second of all, we don’t really even know a lot of the interventions that we use as beneficial in older adults with multiple chronic conditions as they are in the younger, healthier people who tend to be in the clinical trials that identify the effectiveness of those interventions.

04:13 Dr. Mary Tinetti: Third of all, it’s just pure burden, right? We have more and more treatments for each individual disease. We now can treat diabetes with four different medications in addition to all the self-management tasks. Heart failure could be four or more medications. The number of medications and the number of tasks we ask our patients to do has accumulated to the effect that some people say that treating their conditions is even more burdensome than their individual diseases. And most importantly, adults of all ages vary in what matters most to them. So for you, Cheryl, it might be to live as long as possible, even if I’m in a lot of pain and can’t do what I used to do, I may prioritize feeling more comfortable today, doing what I can do today, even if it means I’m not going to live as long as possible. And so we need to take into account those priorities, variable priorities in our decision-making. And finally, the simple thing is, what would you define as a good outcome in the face of multiple conditions? So we need to focus on the individual priorities to address the limitations of treating each disease in isolation.

05:29 Cheryl Beversdorf: And to the point about all health care providers using this approach of health priorities, do you see this as something that every type of physician specialty will use? Or is it going to be more the primary care or the family physician or the internal medicine physician rather than any other kind of specialty? Is there already a focus as to which health care providers you’re really going to encourage to use this, or is it being used already?

06:00 Dr. Mary Tinetti: That’s a great question. Again, I want to put this in the context that this is really still early days. This is not typical care. As you know, it takes a long time for any changes to occur in health care and how we make decisions. So this is really aspirational right now, although places are starting to do it more often. For it to really work, the ideal is it’s not just physicians, it’s everyone who touches that patient. It means nurses, social workers, therapists, pharmacists, anyone who cares for older adults with multiple chronic conditions. They aim at the same outcome. Again, if you have the cardiologist wanting to decrease a heart attack at the expense of everything else, and you have another care provider having a conflicting outcome, it’s not going to work. So ideally, it would be the situation where everybody would aim their interventions at the specific outcomes that matter most to that individual. And I just want to say it doesn’t mean that you are nor treating the diseases or the conditions. It means rather than the disease being in and of itself, it becomes the means towards achieving what that individual person wants.

07:18 Cheryl Beversdorf: You mentioned a little bit earlier already about the fact that older adults are more likely to have more than one chronic condition. In your work right now, is the older adult population really the primary target population that you see that this approach should be used for? Or are you already looking at, say, other populations maybe that are younger but have some multiple disabilities or something? What’s the approach now in terms of target audience?

07:49 Dr. Mary Tinetti: Yeah, so ideally, this would be the approach to decision-making for everyone. Who doesn’t want to have their health care aligned with what matters most to them? The reason we started with older adults, first of all, I’m a geriatrician, so that’s the population that I care for and have cared for 40 years, which led me to see how important this approach was. But also, it’s the population for whom it’s less certain the benefits of all the new and more and more medications that we have to offer. They’re bearing the brunt of the problem with polypharmacy and just having too much health care that’s not necessarily aimed at matter most to them. But we definitely think this works in any population of people with multiple things happening simultaneously where there’s conflicting recommendations, where we’re asking people to do things that they just can’t do. People with complex life situations, I think, are another group that we target. Younger people, it’s not just older adults who have multiple chronic conditions. About half of all adults of all ages who seek medical care have more than one condition. So ideally, it’s everyone, but the population that I think really is the low-hanging fruit are the older adults.

09:11 Cheryl Beversdorf: And as this moves forward, what is the process? If a physician decides that this is the approach that he or she wants to use, do they need to fill out some kind of a survey? That’s kind of what I had been hearing, that there’s a health priority survey. Explain to us what that’s about and also, I guess, what if a patient says, I’m sorry, I really don’t want to participate in this? Do they have that option? Explain to us a little bit more as this moves forward how this will work, say, in any physician’s office or some other kind of setting.

09:47 Dr. Mary Tinetti: Yeah, that’s a great question. First of all, obviously, everything in health care is voluntary. I don’t think any health professional would ever force someone or could they force someone to do something they didn’t want to do. So it’s definitely voluntary. In fact, when we first started doing it, we had a few people who were a little reluctant because they thought, well, doesn’t my clinician already know this about me? Why do I have to do this? Once we explained what it’s about and people understand, we haven’t really had very many people who’ve refused, but certainly everybody has that choice. So in terms of how it would work, it’s going to really depend already on what the setup in the clinic is. It’s starting right now to be in a clinic, an ambulatory outpatient setting, but it can be doable anywhere where people receive their health care, whether receiving it at home or in a hospital or in a long-term care facility. It could occur anywhere. And we know that sort of what we call the workflow, how things happen in all those different settings, really vary by the resources available to that health facility, by the number of staff that are available.

155 Dr. Mary Tinetti: Timing is variable. So what we have developed is a very flexible way to help people identify their health priorities. It can be done by a member of the health care team, perhaps a medical assistant in the office, a nurse in the office, could be the physician, a social worker, anybody who has been trained to help individuals identify their health priorities. It takes, on average, anywhere from 20 minutes to, it could be up to an hour if things get more complicated. We have a sort of a set of probes that help people identify what matters most to them. And if you want to get into details, I can tell you what those different components are. So it can be done by the member of the health care team in a very sort of standardized way so that we assure we identify their priorities in a reliable enough way to affect care. But we’ve also created an online way called myhealthpriorities.org. You can go to that site anytime, and it walks you through either older person by themselves or they could have a family member who they rely on for decision making. We all need to, no matter how old we are, have other people help us make those complicated decisions.

12:12 Dr. Mary Tinetti: And again, it takes them anywhere from 20 to 60 minutes. Could be in one setting or come back multiple times to do it. Then at the end, you can print off a copy of your priorities and take it to your clinician’s office. So again, it can be done. If it’s done by a member of the health care team, could be by phone, could be if you do telehealth, it could be virtually, or it could be in person. So many different ways to do it.

12:36 Cheryl Beversdorf: And is there some guarantee that this information is going to be kept confidential? How do you assure the patient that’s going to be the case?

12:45 Dr. Mary Tinetti: Yeah, no, that’s a great question. If it’s done in the setting of health care, whether it’s by phone or in person, then it’s going to follow the exact same rules that govern confidentiality and privacy. It’d be another piece of health data that is confidential as any of your other health care data. If you do it online, our very first page has our privacy report. You can do this either without signing in. You can do it as a guest without signing in. So then there would be no way to track that information. If you do decide to sign in, it’s done on a private server. By a private server, we mean that nobody outside that server can have access to that information at all. So it’s all done confidentially and following all the rules of if people know HIPAA, it’s a HIPAA compliant, which means it’s HIPAA is what keeps our privacy in health care. So our website follows exact same HIPAA requirements.

13:48 Cheryl Beversdorf: And just so I understand, so if this is in a particular place and it’s confidential, is it also accessible then to other health care providers that are providing care for this patient so that other providers, as you had mentioned earlier, could be nurses or physical therapists or whatever, also know what the person’s priorities are and then can access that information?

14:14 Dr. Mary Tinetti: Yeah. So in theory, it’s very simple and straightforward. In practice, it’s as complicated as I’m sure everybody listening is thinking, why doesn’t Dr. A know what Dr. B did? What should be very simple is very complex. And MyHealthPriorities is no better or worse than any of the others. If you do your identification, if you go to a practice that doesn’t, I will have to tell you right now, very few practices have this available in their clinics as yet, because I said this is early days. It would be available through the electronic health record, just the same way all of your data are available and are, in theory, available to everyone else who’s on that same electronic health record. The problem is, and I’m not sure how many people are aware of it, probably if you tried to get information transferred from one place to another, the EHR is a big morass. And even if it’s there, it’s finding it. That’s the complicated issue. And we’ve been trying to start working with individual health care systems, as well as the large electronic health care companies, to figure out how to put people’s priorities in a way that’s accessible for people who are caring for that individual.

15:35 Dr. Mary Tinetti: We have not solved that problem as of yet. If you are doing this at home and bringing it to your clinician, which is frankly what most people are going to have to do for the next year or two until things get more generalized, is what will happen is that will get scanned in and put in the electronic health record, just like any other bit of information. So what should be very simple, it should be there and it should be found, remains a very difficult challenge.

16:07 Cheryl Beversdorf: This is one of those concepts about the devil is in the details.

16:10 Dr. Mary Tinetti: It’s definitely in the details.

16:12 Cheryl Beversdorf: Well, more to come on that. One thing that you did mention a little earlier, and that’s a good segue into some of the actual parts of the survey, but the fact that you mentioned that care partners and family members could help an older adult record their information. I’m wondering if that may have an impact then on how a patient defines their values, because oftentimes, I shouldn’t say oftentimes, but sometimes family members have a different idea about what’s best for mom or what’s best for dad. And so they may influence the patient when they’re filling out this survey. Has that been a part of it? So speak to that and then move on to the values and why health team members should learn about a patient’s values rather than those of the family members or care partners.

17:06 Dr. Mary Tinetti: Yeah, thank you for that. So since the very beginning, that has been sort of top of mind of us in terms of helping older adults identify their health priorities. In sort of all sides of the equation, when we first went to a family practice, an internal medicine practice that does primary care here in Connecticut, one of the reasons that a few of the clinicians were particularly interested in doing this is because they had that experience over and over again where they would be talking and identifying what mattered to what their patient, and then their daughter or a son or a spouse would come in and say, that’s not what we want. We want mom to have this. And it happens every day. It’s probably happening right now as we speak where an individual may have different priorities than their loved ones. So the very beginning, we have encouraged older adults, again, it was their decision, if they had somebody that they would like to know what their priorities are, to have them join when they go through the process of identifying their priorities. And in our first study, when we first did it, about one out of three, about a third of the individuals had a daughter or a son or a spouse with them when they did their priorities.

18:24 Dr. Mary Tinetti: What we did initially, and we still do, is encourage the care partner, what we call the care partner or caregivers, another term that’s used, family member, to listen to the individual rather than necessarily interjecting what mattered most to them. And we had probably more than once, but I remember the very first time it happened, is that the daughter said to her mother, mom, I never knew that’s what you really wanted. It’s really helpful for me to know. I always felt like I needed to be the one that did this. So we’ve heard that over and over again. So I think for older adults who are worried about their loved ones participating is to say it can sort of work both ways. But I think more often than anything, the family members will go along with what the individual wants once they know what they want. Because I think a lot of times that sort of desire to say we want more and more for mom is guilt by how can I say my mom shouldn’t have this if it might make a difference? Once they know it’s not going to make a difference in what matters to mom, a lot of that guilt goes away.

19:36 Dr. Mary Tinetti: And it makes it much easier when and if there comes a time when the family needs to make the decisions because the individual can’t. But the other thing we really found out from other studies is that there’s sort of three different ways that decisions get made among family members. One is clearly the older adult is willing and able to identify what matters most to them. And then the family hears that and hopefully supports that. The second way is, and this is very often when people have dementia and are no longer able to make their decisions, but also in some cultures, it’s just culturally the way it’s done that family members start taking over decisions and patients and older adults accept that. So it becomes the family who makes the decisions. But there’s also the middle ground and that happened very often where they almost negotiate those outcomes as they go through the process. And what we find, there’s not a right or wrong way. The key is to finding out what works best for that individual and that family and that cultural and adapt the process to that. So that’s been our experience. If you want, I can go through the steps of the process and you said why we start with values.

250 Cheryl Beversdorf: Yeah, I think that would be good just to define what are values. And in fact, as part of that, also address why health team members should learn about a patient’s values. And because of my nursing background and medical knowledge, I’m particularly interested in where those values are applied. And sometimes there are settings, I’m thinking about the emergency department or somewhere where they don’t know exactly what those values are and time is of the essence. And so, yes, talk about the values, the goals, the preferences. What do we need to know about this?

21:31 Dr. Mary Tinetti: So I’m going to walk you through the different components. One of the things that the clinicians told us, it cannot be more than one page. The less you tell us, the more likely we are to do it. It needs to be simple. And so we heard that loud and clear. And so what we did is talking again with clinicians how they made decisions, what information they needed, talking with patients and their families, what information they thought was important, is how we sort of collaboratively came up with these steps. So it starts with values, goes to specific and actionable goals, then it comes to what’s called the most bothersome problem that’s interfering with their goal, what we call their top priority, and their health care preferences. The things about their health care that they feel is helpful and they can do, and components of their health care that were too complicated. So to go through each of those, we start with values. So what are values? Values are the things that make our life meaningful. It’s what’s most important to us about our life. And we start with values, and what’s meaningful is because values tend to stay with us throughout our life, even as we get older, as our life changes, and as our health changes.

22:57 Dr. Mary Tinetti: Those are near and dear to us. And they include things like relationships or connections. It could be with people. It could be with organizations. It could be with spirituality and religion. A second common area of values are productivity and meaningful activities. This may be volunteering. It may be your life’s career. It could be hobbies. The third big area is what we call autonomy or independence or function. Those are really the three big categories. And so we start with asking questions like, what does a good day look like to you? What is most meaningful in your life? What gives you meaning and joy? What activities you would like to be doing more of? We start with those values that we all have. There’s a reason we go to health care, right? It’s a reason why you want to be healthy, right? And to live your life. It’s not that you want a beautiful blood pressure. It’s you don’t want to have a stroke so you can take care of your grandchildren, right? So we start with the values. But we can’t end there, because if people say what matters most to me is to be independent, I as a clinician, or you, Cheryl, as a nurse, I’m not sure how to help you do that.

24:21 Dr. Mary Tinetti: But if you tell me that I want to be able to walk to the grocery store and bring my groceries back, I understand that. And I understand as a doctor, and you may understand as a nurse, a social worker, physical therapist can get that. If it matters most to you as your family, I don’t know how to help you do that. But if you tell me that I really want to be able to babysit my grandchildren three days a week so my daughter can volunteer at the soup kitchen, I know how to help you do that. So we have to take those general values and translate them into specific and actionable and realistic goals. Realistic based on your life circumstances and what you’re willing and able to do to achieve them. So that’s why we start with values. They’re stable. They don’t change. Goals, we can inform decisions, but they do change over time. And then we do what’s called the most bothersome thing. Because if there’s a lot of things going on, we don’t know where to start. And people are very often able to say, what really gets in the way of achieving my goal, which is to babysit my grandchildren or volunteer at the soup kitchen.

25:47 Dr. Mary Tinetti: Whatever it is, it’s usually a health problem. It’s very often a symptom such as pain or fatigue, but it could be a life circumstances that I just don’t have enough money to pay for transportation to get me where I need to go. So you want to sort of start with their values, go to specific and measurable goal, and then identify the health problem that’s most getting in the way of doing that. That’s what we call their top priority. So I want to be less tired so I can volunteer at the soup kitchen, or I want to be in less pain so I can walk my dog. You don’t ignore all the other health problems. It’s a way to get started. And then you ask them what about their health care they’re willing and able to do and what they’re not willing and able to do. And we ask about those because it’s all about tradeoffs, right? I want to be able to run a marathon once a year, but I don’t really want to exercise. You know, there’s tradeoffs. I want to be less tired, but I don’t want to do the exercises that will make me less tired. So those are the components we ask about because they are the parts that make up decision-making with all of your health providers.

27:00 Cheryl Beversdorf: And given what you just said, you’re setting the stage here, then is it really the role of the health care team member, their response to that patient’s top priority, that they or he or she should then treat that top priority first, even though, say, perhaps they don’t agree with that individual?

27:27 Dr. Mary Tinetti: Well, so that simple question has a couple of components, right? Is by definition, if this is what matters most to that individual, the clinician doesn’t necessarily disagree. I mean, being more tired so that I can walk my dog, nobody can say that’s not what’s most important to you. What the clinicians may say is it really gets more into, I think, a couple of different ways that they may disagree. Number one is they may be so concerned about a future life event that if you’re not willing to take a medication that’s going to help you live longer and be able to do that goal, they may be sort of having that conversation is, well, you maybe have to put up with some discomfort today to prevent the likelihood of having that bad outcome and preventing you from doing what matters most to you in the future. Because we as clinicians tend to think about tomorrow and tomorrow and tomorrow, a lot of times older adults thinking about today or today or today. So by talking about your top priority for today, it helps set up that discussion so that you’re on the same page. Because when doctors and health professionals and patients disagree, it’s usually because they’re focusing on different things.

28:47 Dr. Mary Tinetti: So what’s good for today may not be good for tomorrow and vice versa. So there’s no right or wrong there. It’s getting the health professionals and the patients on the same page. The other times that clinicians may disagree is in the intervention. So if a patient say, I want to be less short of breath so that I can again, babysit my grandchildren, but I don’t want to take this medication. The clinician may then disagree with, well, I’m sorry, I can’t help you achieve your being less short of breath if you’re not willing and able to take this medication. So let’s talk about the trade-off you’re willing to do to achieve what you want. So I think that’s another time they may disagree. Another time where it gets more complicated, if there’s really what we call an acute and really serious problem that’s going to interfere with everything in your life. You may want to be less tired, but if right now you’ve got a really dominant health problem, whether it’s really severe heart failure or something, until you get to deal with that problem, it’s really hard to think about having other realistic goals. So I don’t know if that answers your question, Cheryl. They can’t disagree with what matters most to you. They may disagree with how to get you there.

304 Cheryl Beversdorf: Well, and I guess if you ask a patient to fill out this survey and they provide all of the right things, the values, the goals, the preferences, what’s bothering them the most, how can the patients then be assured that what they wrote down is going to be what gets addressed in the order in which they told their health care provider that’s how they want it to be, especially if, as you said, sometimes there could be some disagreement based on the clinical knowledge that the health care provider. So it’s kind of an iffy situation. Would you agree?

342 Dr. Mary Tinetti: It’s a very iffy and complicated situation. Again, it’s one of those things where the obvious solution is simple, how to enact is more complicated, because you have the patient on one side knowing what matters most to them. You have the clinician on the other side who is an expert in individual diseases, but not necessarily in what matters to that individual. But you also have to look from the view of the clinician what they’re facing. They’re told to follow all these disease guidelines, and there are now what’s called quality and payment metrics. They actually get measured, and some of their pay comes from making sure that you do what the guidelines tell you you’re supposed to do, getting your blood pressure under control, getting your diabetes under control, whatever it is. And getting your diabetes under control and your blood pressure under control may require you taking treatments that are impeding you do what matters most to you. So you have to sort of see what the clinicians are facing. And you have to do this in a 15- and 20-minute visit when they have an entire script. So you’ve got the patient with the script of what matters most to them.

31:57 Dr. Mary Tinetti: You have the clinician with a script on what they’re supposed to do during that ever-shortening period of time. So how do you break through this? I do not have a perfect answer today of how to break through this. This is my life’s work and it’s going to take a long time to get us there. A couple of things that I would say to health professionals is, number one, not to worry too much about the quality metrics. By focusing on what mattered most to the individual, the quality metrics are going to improve. Because they’re not taking that blood pressure medicine and that diabetic medication anyway if it’s causing them problems. So by focusing, having the conversation is, you need to take this blood pressure medication because your blood pressure is too high. That’s not going to change anybody’s behavior. Well, it’s going to change a few people’s behavior, but not most people. If you have the conversation, I know what matters most to you is to be less tired or more or less short of breath so that you can babysit your granddaughter. Let me talk to you about how I think if you’re willing to take this medication, it’s going to help.

33:04 Dr. Mary Tinetti: What we’re trying to do is get clinicians to sort of look through that lens. We also know that by listening to individuals, they are more adherent to what we want them to do. That’s another thing we say to our clinicians. The third of all we also say is that all these metrics, most of the people that are going to most benefit from patient priorities care can be taken out of those metrics. There are simple coding ways for that to happen if clinicians are willing to do it. Today, what I have to say, because not a lot of clinicians understand that yet, hopefully more and more are, but it’s an uphill battle, is the patient. If they go through the myhealthpriorities.org, after they identify their priorities, there’s a couple of pages of how to interact with their clinicians around these priorities. And this is where the family member can be helpful. Rather than coming in with their own priorities, the family member can be the individual who helps interact with the clinicians using some of the tools that we have on our website to get clinicians to be listening to what matters to that individual. So right now it is unfortunately more under the responsibility of the patient and his or her advocates to move the clinicians in that way. But I will tell you, once clinicians hear loud and clear what matters to the individuals, it does move the needle.

34:33 Cheryl Beversdorf: As I was listening to you, I also would throw out the fact that right now you’ve been talking a lot more about the physical status of a patient, given the fact that we’re talking about an older adult population, things start changing, not only physically in terms of chronic diseases, but mentally. If somebody has early dementia, and as the disease progresses, their values or thinking may obviously change, could also even be social. They move someplace, they go to an assisted living facility kind of thing, or even economically, that suddenly because they lose their job, because older adults can be not necessarily on Medicare, but lose their insurance, so maybe they can’t come to the physician as often. Are these components also woven into My Health Care Priorities so that it’s more of a holistic kind of approach rather than just maybe a focus on the physical aspects?

35:37 Dr. Mary Tinetti: Yeah, and thank you for raising that. In my mind, I never think about it anymore just being the physical because sort of I bought into my own approach and I realized by its very nature that if you take any activity that you want to do, let’s go back to I want to be less short of breath so I can volunteer at the soup kitchen three days a week. Okay, there’s no way you’re going to address that by focusing only on diseases, right? Because almost inherently, you have to have the cognitive mentation to be able to understand what it does to get to there and to do the activity once you’re there. Motivation is a key for all of this, so you can’t ignore depression and mood if you’re doing this. The social part of it is, do I want to go out and be around people? What’s keeping me from I really want to do this, but what’s really keeping me from doing this is I just don’t feel like I can participate and do that activity.

36:44 Dr. Mary Tinetti: The economic and the environmental part of it, how do I get out of my  apartment or how do I, if I’m in assisted living do I feel comfortable going to the card games that exist there or how do I get transportation to where I want to go and how do I pay for the kind of things that need to happen? So by its very nature, it brings in the medical, the social, the psychological, environmental, and economic, which means it has to be the team, right? It’s not one person that’s going to help with this. That’s why it’s so important for anybody who’s involved in your care and your setting. In assisted living, it’s very important for people, for the staff to know what matters most to you, no matter where you’re living and no matter what your priorities are.

37:27 Cheryl Beversdorf: And at this point, Dr. Tinetti, have there been studies that have been conducted to measure the success of the patient’s priorities care model? And if so, where? In what settings, perhaps, or in different parts of the United States? And if so, also, what have been the outcomes?

37:48 Dr. Mary Tinetti: Yeah, so we’ve had some what we call more formal studies. We have one in Connecticut. There’s been one in Texas, and we did one at the Cleveland Clinic. And in those sort of formal studies, and there’s some ongoing ones now in the VA, that’s hopefully will be coming out soon. So in those formal studies, we have clinicians, primary care and/or specialty care, who sort of gotten some training in how to help individuals identify their priorities and how to act on those priorities in their decision making and care. And we have older adults who themselves have identified their health priorities going through the process we talked about, and who receive care sometimes by clinicians who know and act on their priorities and others that not. So it’s kind of controlled study. And in all of those studies, what we have found is that clinicians are able to move from just treating all their diseases individually to really start by knowing what matters most to individuals and filtering all their decision making through what matters to that individual. So we know it’s feasible. And we know that both patients and health professionals like it. We’ve done qualitative work to identify that they’ve liked it.

39:08 Dr. Mary Tinetti: And we have found that it’s resulted in what we called less unwanted care. So we by reviewing the EHRs of people that have received this type of care, the electronic health records, we’ve identified that more bothersome medications have been stopped, and more unwanted health care tasks have been added. They even had a few fewer tests and procedures. And the good news is what wasn’t at the expense of bad health outcomes, because they also had fewer emergency visits and fewer hospital days. So we know that results in less unwanted care without any bad outcomes. And we also know that it resulted actually in increased social support. So they had more transportation services, more rehabilitative services, such as therapy to get their strength back. So we’ve found that it really is feasible and doable in practice. But those are still sort of early studies, still only involved a few hundred people. We’re now in the phase of trying to disseminate this more broadly into health care. And there are some big organizations that are carrying it out. One is the Veterans Affairs. We’ve had many sites at the VA now incorporating it into their practices with older adults. So if you get your care at the VA, ask them about patient priorities care.

431 Dr. Mary Tinetti: It’s not at every VA, but many. There’s a program that’s for people that are both Medicare and Medicaid eligible. It’s called the PACE program, the Program for All-Inclusive Care for the Elderly. And several of those programs have adopted it. If you go to our website, patientprioritiescare.org, and look at the About button, there’s a map of the United States. Actually, it’s a map of the world where there is some patient priorities care existing. It’s right now throughout the United States. There are sites that are doing it, but it’s only a few sites that are presently doing it throughout there. So it’s spreading and spreading, but it’s hopefully doing through kind of the work that you’re doing, Cheryl, getting the word out there that this exists, is we’re hoping it’s going to spread more. And we find that one of the factors that really pushes adoption of innovations of health care is by patients asking for it. So early days, we still have a long way to go. And probably most of the people that are listening here don’t get their care at the place that does it. But we do know that talking to your clinicians about it gets them thinking about it and looking for it.

41:44 Cheryl Beversdorf: As part of your measuring success, I would also want to ask you if the participants, both the patients that are doing so as well as the providers, is there more receptivity in one group than the other? Are patients happier with the fact that the physician might be actually listening to him or her? Because often there have been studies about the fact that older adults are very unhappy that physicians aren’t listening to what they want or need. Can you talk a little bit more about are the patients the ones that are really going to be pushing and asking for this? Or is it going to be more the physician saying, yeah, this makes a lot more sense to treat my patient this way, especially, again, older adults? Because I think sometimes there is that lack of understanding of how older adults think or want to be treated, say, than when they were 30, 40, 50 years younger.

42:46 Dr. Mary Tinetti: Yeah, that’s a great question. So again, qualitatively, we do know that both clinicians and patients are a little leery at the beginning. This is something new. It’s going to take more time. Patients say, my doctor should already know this. Doctors say, I’m already too busy. People are going to ask for stuff that I can’t give them. Skepticism at the beginning, those that really try it almost always get converted. And so to me, it’s not about the patients and it’s not about clinicians. It’s not going to work if everybody isn’t in it together. And one of the ways that we sell it to clinicians is that they want their patients to do what they want them to do. And we tell the clinicians, if you listen to them, they’re going to listen to you. So I think it really is a sort of positively reinforcing. If patients try it, they like it. If clinicians try it, they like it. And that’s how we think this is going to spread very closely. Now, again, I have to tell you that there’s a lot of infrastructure and money that’s working against this because physicians get paid by the disease. And with all of the stuff that’s happening now with health care, nobody’s talking about this.

44:06 Dr. Mary Tinetti: They’re just having these across-the-board cuts without any attention to the real way to save costs is listening to what patients really want and aligning care with what they really want. So there’s a lot of things working against this happening. But what does tend to still work? A lot of innovations come from the bottom up. And I think it’s not going to work if both patients and clinicians don’t find it useful. And in most of what we find with the clinicians is leery at the beginning. They think that people are going to ask for stuff that they can’t give them. And I will tell them our whole process is set up to come up with realistic and actionable goals. So it’s built into our process that they’re not going to come in to ask. This is not like getting something off the internet and going in and saying, I want this new drug because I heard about it on the internet. This is about really coming up with realistic and actionable goals. And once clinicians get comfortable doing it, it’s not as hard as they thought it was.

45:04 Cheryl Beversdorf: And also another aspect, especially in the United States, but it could be if this is becoming something that’s in other countries, the cultural aspects. You’ve got people who don’t speak English or their definition of value or preference or goals might be different than how it’s stated in the survey. How do you handle that?

45:29 Dr. Mary Tinetti: Yeah, no, that’s a great question. And I think when we were talking about a different question, we did talk about the cultural difference in how decisions get made. Just in terms of cultural translations, it’s now been culturally translated into Spanish. It’s now in the process of Arabic and Chinese. So those are three very different cultures. And when we do the translation, it’s not a language translation. It is a cultural translation. And as I mentioned also, is the decision making can be like America, autonomy, individual makes the decision, but there are other cultures that are inherently family-based and all decisions are family-based. This works with all of the different cultures. It was really set up to really be adaptable to the different cultures.

46:20 Cheryl Beversdorf: And if there is some professional who’s helping someone to fill out that survey, be it by himself or herself or with a family member, is there an interpreter or someone that kind of helps to guide them in so far as understanding what the questions are? Or again, just occurs to me that the language and the understanding of some of the terms might be different. So I was just wondering if there’s some assistance when it comes to asking folks to fill out the survey.

46:54 Dr. Mary Tinetti: Well, again, that’s going to be depending upon where they do it, right? If it’s done in a healthcare setting, in theory, you’re supposed to have translators for people who are not English speakers. So this would be no different than that. If they’re in a setting where their providers are culturally sensitive, it’s going to happen. If they’re in a setting where they’re not, then it’s not going to happen. Our online myhealthpriorities.org, when we do the translations, they are done culturally. So the probes are such that it accounts for some of the cultural differences. But once it gets used in certain settings, we can’t be sure that’s going to happen. That’s a problem with all of healthcare.

47:36 Cheryl Beversdorf: And speaking of settings, the other thing I wanted to ask you is, are we talking mostly, as you had said, about outpatient departments or physicians’ offices? Or given the fact that there’s lots of older adults who are living in retirement communities, assisted living, nursing homes, but is part of your goal to apply this new tool in all of these different settings?

48:03 Dr. Mary Tinetti: So again, we started in the outpatient setting because we were focused mostly on the burden of people’s chronic diseases. That really is just the ongoing care that people receive that just gets added on to and never subtracted. So we started in the outpatient setting for ongoing care. And that’s whether if you live in a retirement community or assisted living, you still get your care in an outpatient setting. So that should not differ whether you live in your own home or if you live in assisted living or live in a retirement community. You still get your care. It may be on-site or you may go to a place, but it’s quite the same. What we have been doing more is thinking, well, it’s not just when you’re at home, wherever your home may be. It’s also important when you’re faced with more procedural, acute decisions. So we’ve been working actually with surgeons and interventional cardiologists to figure out how do you adapt decision-making for surgical procedures or complex other procedures that make sure that the outcomes that matter most to you in the face of trade-offs of those procedures are the ones you really want.

49:13 Dr. Mary Tinetti: So it’s not just, well, you’ve got a hernia, we have to repair it, or you’ve got cancer and we have to take it out. It’s really what are the outcomes that matter most to you and whether this procedure is going to help you do that. And we started doing that. University of Texas, my colleague, Anna Nayak, is leading a lot of that work, actually using artificial intelligence. Because you want to go through all the different things that matter to the individual. What are your fears? What are your concerns? What are the trade-offs you’re willing to do in terms of recovery? And trying to see if we can think about all those different aspects in a time-efficient way so they can really individualize the decision-making with individuals. We’ve also worked a little bit with emergency departments that you talked about at the beginning. We can’t go through a 20-minute or a 60-minute interview for that, right? So we have some very simple questions that can be used in the emergency department. And the questions are, what are your main concerns that brought you here today? What are the major things that your concern and fear is about being here today?

520 Dr. Mary Tinetti: And what is the outcome that you most hope from being in the emergency department? So that’s been tried in several emergency departments throughout the country. It can get incorporated into the busy workflow, and they found that it’s quite helpful. We just finished a study where we’re working with older adults who are receiving home-based primary care, very frail individuals. And we’re able to do it usually with a care provider as well. We’ve also done it with people with cognitive impairment and their care providers as well. So we’re trying to adapt it to multiple sites. And what we’re hoping, we can’t do all of it. As time has gone on, we’re bringing in more and more people to get them understanding patient priorities care. So we do what we call train the trainer. So now we’ve got hundreds of people who have gone through the training and are doing it in their settings, opening training more and more. And the idea is they’re going to modify it for their settings, whether it’s long-term care facility, nursing homes, or other places. Again, it’s not going to be the original people, a smaller group of people that started doing this, but as it’s spiraling and snowballing, hopefully more and more places and more and more settings. It should be everywhere.

51:30 Cheryl Beversdorf: Well, and thank you for stating that because I was just about to ask you, are there any situations where patient’s priority care is not the best approach?

51:40 Dr. Mary Tinetti: Well, is what matters most to you never not the most important approach? Again, it may not be the formalized, systematic way we’re talking about going through and identifying your top priorities. Because obviously in your emergency situation, you’re not going to go through that process. That’s when you really need to have your family member who knows what matters most to you to identify, knowing this mom wouldn’t really want this emergency surgery or knowing mom, she would want this emergency surgery. So some component of knowing what mattered most of the individual should always be part of health care. How it gets acted on is going to be very different in the emergency and urgent situations versus more ongoing care.

52:22 Cheryl Beversdorf: Well, and again, there certainly is a lot of analysis that needs to be done, especially on the part of the healthcare provider in terms of figuring out when the patient knows best versus when the healthcare provider knows best. Would you agree?

52:38 Dr. Mary Tinetti: Well, the way we look on it is this, is that the patient is the expert in the outcomes that matter most to them. The health professionals are the experts in knowing the interventions that are most likely to help them achieve that outcome. So it’s not either or, each has their expertise. Like patients sometimes come in and think, you know, we can raise the vaccine issue, right? Patients will come in and say they don’t work or they’re harmful. And that is a situation where based on a lot of evidence, that’s not accurate. There’s an overwhelming amount of evidence show that they do result in better outcomes. People do live better to do the things that they want to do. But on the other hand, it’s not up to the clinicians to say, it’s more important for you to live longer, even if you’re miserable, than it is for the patient. So that’s how I look upon it. Everybody has their expertise.

53:40 Cheryl Beversdorf: Your response reminds me of a primary care physician that I had at one time. Sadly, he passed away as a result of cancer. But sometimes when I showed a particular pain that I had, he just looked at me and said, you’re just going to have to live with it. And that was kind of the response, at least at that time, and that was quite a while ago. And so it’s hard to know. I mean, as they said, in terms of medicine, it really is more of an art than a science. But we’re getting close to the end of the program, and I wanted to just ask you about the future plans for patient priorities care. You’ve shared a lot of information here, which has been most helpful, but anything that we should look forward to or can learn more about in terms of resources or educate ourselves as to this new approach? Or maybe it’s not a new approach, so what do we need to know?

54:37 Dr. Mary Tinetti: Yeah, thanks for that. So yeah, to answer your question about whether this is a new approach, I think what it actually is, we’ve given both patients and clinicians sort of the tools and the language to do in a systematic way what I think everybody would want to do. I mean, patients always want to be listened to, and clinicians always want to provide the care that patients really want. So I think it really helps people do what they really want to do. The future for this is really uncertain. It depends upon us having the time and the bandwidth to get above the noise in so much things happening in health and health care in the broader world to recognize that this is something that’s doable. It’s good for patients. It’s good for health systems. It’s good for practicing clinicians of health professionals of all type. So again, we’re training more and more people in how to do this over time and getting the resources to do this. My guess is if this is going to happen, we’re probably 10, 15 years down. Most innovations take that long. If people want to learn more about it, the place to start is our website, patientprioritiescare.org. There’s parts that tell you about where we’re working and what we’re working on, publications that show the evidence. There are places for patients and caregivers to get information to learn how to do their own priorities, and places for health professionals as well. So I would start with patientprioritiescare.org. Go to MyHealthPriorities. Fill out your priorities. Take it to your next visit.

56:09 Cheryl Beversdorf: All right. Well, this has been very helpful, and it sounds like one of those concepts that is going to be the future in health care. So I definitely want to thank Dr. Mary Tinetti, the Gladys Phillips Crofoot Professor of Medicine at Yale School of Medicine, for joining me today. Thank you, Dr. Tinetti. This has been very helpful.

56:30 Dr. Mary Tinetti: Thank you for having me.

56:33 Cheryl Beversdorf: To learn more about Aging Matters, you can visit our website at agingmattersonline.com. And of course, at this site, you can access all the Aging Matters radio programs that we do, the TV show episodes, of course, in addition to the Aging Matters podcast, which are posted on Apple, Spotify, Red Circle, Simplecast. So be sure and check those out as well. And you can find those all listed on our website, agingmattersonline.com. Aging Matters is produced in association with Steve Lack Audio. To learn more about that company, you can visit stevelackaudio.com. Thank you for listening to Aging Matters today. And remember, age is just a number, not a label. I’ll be back again with you next week.