Melissa deCardi Hladek, PhD, CRNP, FNP-BC,  joins HealthCetera to share insights on My Health Priorities, our patient-centered platform completed by older adults to identify what matters most to them in engaging their health care.

Dr. Hladek is an Assistant Professor at the Johns Hopkins School of Nursing. She’s a nurse researcher and a Family Nurse Practitioner who focuses her research and clinical care on how stress, self-efficacy, and sociocultural factors influence the biology of aging, chronic disease and frailty.

This radio program aired live on Oct. 11, 2023 from upstate New York/Catskill at 91.3 FM.

[00:00-01:38]

Barbara Glickstein: Hi, this is Barbara Glickstein with HealthCetera. I’m turning 70 in March, and I can’t tell you, when I share my age, the most common response is, ‘wow, you don’t look it.’ And I’m starting to wonder whether I should find that as a compliment or something else about ageism where being 70, I should look some other way. So entering the few months before my birthday, I’ve been giving a lot of thought about age, life. What else do I want to keep doing? How much I love my work. 

I’ve had the pleasure of meeting someone recently, Dr. Melissa deCardi Hladek. She’s an Assistant Professor at John Hopkins University School of Nursing. She’s a nurse researcher, a family nurse practitioner who continues to practice. She focuses on how stress, self-efficacy and socio-cultural factors influence the biology of aging, chronic disease and frailty. So in addition to meeting her a couple of weeks ago now, I’ve invited her onto HealthCetera to share the wisdom, scholarship and conversation about aging in America. Not only America, but aging and particularly the impact of engaging in health care, and how we can do better. So welcome to HealthCetera, and I’m pleased to have you here. May I refer to you as Melissa?

[01:39-1:42]

Melissa Hladek: Of course, and thank you for having me today, Barbara.

[01:43-02:22]

Glickstein: So I’m going to start with another piece that just came across all of our windows on social media. I want to say that art is successful when it generates emotion, so emotion can be elation or disturbance. I love art and I love what it can do. So the October 2nd New Yorker magazine front cover was an illustration with cartoons of President Biden, Senator Mitch McConnell, Senator Nancy Pelosi and former President Donald Trump, and they’re all using walkers. The comments have blown up online — comments that this art not only offended older adults, but also offended people with disabilities known as ableism. Melissa, did you see that cover?

[02:33-03:28]

Hladek: You know, I didn’t. But I did do my dissertation research on older adults, and I’ll tell you one of the most powerful moments was talking with people about their functional status — how they’re walking and things, and realizing that they’re walking with a walker, and when I asked them, ‘Do you have any limitations with walking?’ flat out said no. And the way that I perceived the walker was that it was evidence of a limitation, where they perceive the walker as the tool they needed to be successful in walking wherever they wanted. And that was so empowering to me, as a researcher who’s a little bit younger than them to realize, wow, that’s right. A walker is a tool that allows me to do anything. And I think that I also would take issue with that New Yorker cover for that reason.

[03:29-4:51]

Glickstein: So we can move on from that, it’s just interesting. And what I have noticed in addition to comments around that and people writing letters, I haven’t seen this — weeks of response and letters. But I love that you just shared that dissertation of point because I’ve recently also been around someone who’s had multiple surgeries — I won’t go into what they were — and she was using a walker. And I said, ‘Oh, how’s that going?’ And she said, ‘I’m getting around! I’m not complaining, I’m moving. I can get places; people move out of the way — not everybody, I gotta say move out of the way sometimes.’ And so our perceptions of how people live with not only their age-related, perhaps, use of hearing aids or a walker or a stick as some elders call them and not a cane, is really part of what I think is ageism, and what we perceive as being a problem where those living and fully embracing how they can continue to be liberated with these tools matter to them. So talk about healthcare as an arena where some of this ageism really comes in, and your research and your work to address it and how you are addressing it.

[04:52-05:27]

Hladek: Absolutely. So, I agree. I think that ageism is alive and well. And I think that what we’re getting at though, we’re talking about your friend with her walker and having these multiple surgeries is really what matters to her. What matters to her is that she’s able to get around; you said that. I’m able to get around, right? And I think that in health care, a lot of the times we’re focused on disease management, especially when people have a lot of diseases, and we have this limited amount of time as clinicians. We just want to get through the diseases, but that’s not what matters most to the patient. 

[05:27-05:28]

Glickstein: Right.

[05:29-06:32]

Hladek: And I like to talk about Mrs. B. who is this, you know, compilation of a patient who is in her 70s. All she wants to do is be able to babysit her grandkids two days a week to help her daughter out. That is what matters most to Mrs. B. And yet, when we think about her health care and her heart failure and all these other things, we can’t hardly get to what matters most to her. And so I’m a part of a study and a movement called Patient Priorities Care that is all about helping patients tell their goals and values and care preferences to their providers and helping providers do the same thing — eliciting those same goals in order to create a new North Star, a new North Star that focuses on what matters most of the patient. And then all the disease markers that are very, very important, almost become more mediators, ways, to get the person to what matters most to them.

[06:34-07:01]

Glickstein: So in Mrs. B’s scenario, how might that be ignored? And then how with her stating that as a priority, change the conversation with her health care provider? So at first, she says, ‘Listen, I can’t do that test on Wednesday. That’s the day I take care of my grandbabies. I know you have another schedule, I could do it next month.’ What might be a response not paying attention to how important that is?

[07:05-07:37]

Hladek: Well, I think that the worst response would be something like, ‘well it has to be done sooner than later’ and not really accounting for her desires and care preferences. I think that’s another really interesting point out of this research is that medical appointments tend to take half of a day. You know, and even if someone’s retired, that’s still a lot of their time, valuable time. Older adults with multiple chronic conditions spend two hours per day on health care tasks. 

[07:38-07:39]

Glickstein: Wow, wow.

[7:39- 09:13]

Hladek: And some things they appreciate and some of them they don’t. I think what’s really, really important is also some of the recommendations that we have as medical providers are actually causing unintentional harm to another one of their conditions. Right? So we tend to use these evidence-based guidelines which are incredibly valuable, but the problem is the research that we base those guidelines on sometimes excludes people with advanced age. Sometimes it excludes people with multimorbidity, multiple conditions. And sometimes it doesn’t even include a real large number of people of color which make up a large percentage of our population. So we’re not accounting for the multimorbidity, and we potentially are even recommending things that cause unintentional harm to other problems. 

And so, that health care provider that’s saying, ‘Well, you need to get this test done,’ actually needs to change their perspective, and the patient can help with that. The patient can actually go to a website, MyHealthPriorities.org, and I’ll say that again, MyHealthPriorities.org, and list out their own values, goals and care preferences and print it out and bring it to their health care provider to advocate for themselves in order to say, ‘Look, I can’t get this test done now, because this is what matters most to me.’ And the patient can help with the education of the provider. We’re trying to educate the providers too, but the patients can also be part of that journey.

[09:14-09:54]

Glickstein: You know, one of the things that when I was able to still care for my mom, who has since deceased, is when a provider said well, ‘If you were my mother…,’  it used to make the hair on the back of my neck stand up. It’s like, she is not your mother. And you have no clue what she needs and what her priorities are. And so this directive to have that information, and I looked at the website more than once since you told me about it, and it’s not very complicated, which is the other thing that I really liked. What is there, five steps? Can you go through the five steps, Melissa?

[09:55-10:45]

Hladek: Well, the first step is identifying people’s values. And values are big, right? They’re not actionable, they’re not things you do. It’s more like my family is really important to me, or staying active and volunteering is really important to me. Living a long life is really important to me. Values are very different. And let me tell you this — you cannot put all older adults in one bucket. That’s totally unfair. Some older adults want to be more functional, even if that means they live for shorter amounts of time. Some older adults want to live for as long as they can, even if that means that they feel a little more tired now. We can’t decide. It’s their decision. Right? And so with regard to your question.

[10:46-10:48]

Glickstein: There’s five steps and the first one is values.

[10:49-12:53]

Hladek: Yeah. And the second one is then taking those values and creating goals — goals that are actionable and realistic. So if Mrs. B were to say, ‘I want to run a marathon,’ I would say well, ‘how about we start with walks.’ We want to make sure the goals are realistic but also actionable. I love my family, then the goal associated with that value might be I want to babysit my grandkids two days a week for my daughter, and that’s possible with my health. I can do that. So then from there, we also say, ‘Well, what is burdensome? What is making it difficult to do that?’ ‘Well, honestly, it’s taking the diuretic, doctor, for my heart failure. The diuretic makes me have to go to the bathroom all the time, and it particularly is hard when I’m picking them up from the bus stop.’ And so what happens is, a lot of people maybe won’t take it at the right time because it’s interfering with their lives. And that’s just reality, right? 

And if we can develop trust with our patients, then they can actually tell us, ‘I’m really not taking these’ Right? So then from there, we find out what’s burdensome care and then what’s good care. ‘Okay, actually, I really like the physical therapy. That’s helping me. The physical therapy is helping me. Taking all these drugs, I don’t think it’s helping.’ And then from there, you say, ‘Okay, well, let’s, let’s do some trials together. Let’s decide what we want to do to potentially make the care that’s burdensome, less burdensome, the care that’s working, let’s keep that and let’s keep your goal in mind.’ And then we do trials. We can do trial and error, and we can say ‘okay, we’re gonna try this for two weeks, see how it goes, have you back. And then with the main goal being, were you able to watch your grandchildren more successfully or less successfully because of the change we made in your care?

[12:54-13:08]

Glickstein: And the change in that instance might be the timing or the use of the diuretic being on a schedule that would allow for less need to urinate during three and six o’clock, for example, if that’s when the kids get off the school bus?

[13:09-13:19]

Hladek: Absolutely. We could change the time that we take the diuretic, and that actually might improve things anyway because maybe she wasn’t taking it because of that.

[13:20-13:41]

Glickstein: Yeah. I so appreciate that scenario that allowed us to think through those five steps. And What would have been some of the responses? I know that you are practicing clinically as well. And have you been able to implement this yet into your practice? And what have been the responses of the people you’re privileged to care for?

[13:42-14:26]

Hladek: You know, a little bit, a little bit. I have had the privilege of doing some goals and values with some of my patients. And I think that the response, I mostly work in central South American immigrant communities. And some of them are like, ‘thank you, we’re kind of a team.’ And sometimes it can be a little bit off-putting in a way. It’s like wait a minute, I was here for my blood pressure and now you’re asking me about my values? Sometimes, especially when you have more of a hierarchical understanding — I’m going to do whatever the doctor says or the nurse practitioner says —  it can be a little bit strange, but I think that all it has done for me is foster trust. 

[14:27-15:32]

And also, I think from a health equity perspective, which is very near and dear and important to me, what I have as a clinician in the exam room is very limited. I can use something called Z codes which might say, you know, ‘needs food assistance’ or you know, just different codes, but it’s hard to have much to do for those codes. What I can do though, is listen to my patient and center their voice. And I think that’s the next step in health equity work, because it might be that what matters most to them has very little to do with their diabetes, and it’s still what matters most to them. And then I think what happens is care actually improves a lot of the time because people are, I think, fundamentally able to access who they are and their purpose and that just translates into better wellbeing. And so far, that’s what I would say I have seen,

[15:33-16:48]

Glickstein: Wow. You’re really describing a cultural shift, and in every instance, that cultural shift requires a very, as you said, patient focus — centering that person — and in a way that probably for many people, particularly our immigrant population, our elders, people of color, have felt so invisible and so uncared for in health care; I don’t mean specifically by you as a clinician. So to be seen, and actually asked a question that is the attempt for you to build this relationship is already radical. It’s really a radical transformation. And for our elders, I think that aging, you know, in many cultures, is more respected than in some cultures. And so to see the wisdom and the knowledge and the life experience as being critical to the trust and care encounter that you’re providing must make people feel pretty uplifted, even if it’s questioning, like, ‘what’s going on here? This has never happened before. I want that too.’

[16:49-17:39]

Hladek: Absolutely, and it leads to the next phase. Say someone does choose something that can be, you know, maybe not based on evidence-based that we have as best as we know based on this person, but then we have built this trust so we can start talking about the trade-offs a lot better. And that’s leading to health literacy, right, that’s leading to a better understanding of how my disease works. So all of a sudden, this person doesn’t want to take this medication anymore. And I get to have a conversation with someone who trusts me about what that could mean for their health and the trade-offs of, you know, this might mean something else down the road, but doing a really good job of people understanding the trade-offs of their decisions.

[17:40-18:06]

Glickstein: I also would love for you to talk about how MyHealthPriorities.org has a section for people who care for and love those elders that are filling out their section. So for the listeners, it may not be you, or you can do it too at any age, but perhaps you’re engaged in caring for an elder, and this is a way for you to engage in that conversation with them. So what does that look like on that platform?

[18:07-19:20]

Hladek: Well, I think there’s a couple of different ways that could look. In fact, the caregiver can fill it out with the patient, or their loved one, and I think that’s probably the best way. Then you get to have this very rich conversation around their health priorities and what matters to them. And it might be surprising. Sometimes it’s hard for caregivers to have those sorts of conversations, and this almost gives the caregiver a framework, to then have these conversations. And also the other thing that’s really great about health priorities, Patient Priorities Care, it can almost unify and galvanize the whole team. You can give these examples to the physical therapists that comes, a caregiver, the care team, the physician, the nurse practitioner, the whole team, the cardiologist, can have these same goals, and it’s almost like their full team is all together for these same goals and that can that can actually, I think, create more synergy in the decisions that are being made.

[19:21-19:50]

Glickstein: And now I know this is very different than filling out a health care proxy, but I want you to say to our listeners why it’s different and how that is critically important as well for everyone at all ages to have completed that. But for someone who’s listening who might think ‘well, I’m not ready to make those kinds of final life decisions.’ What would you say to make sure they understand this is quite distinct from that kind of important document?

[19:52-21:32]

Hladek: Yeah, absolutely. Yeah, no, it is very different. We’re not talking in any way about sort of end of life decisions or decisions when you’re not able to make the decisions for yourself. We’re talking about a paradigm shift like we’ve said before, in the ways we make decisions in healthcare — especially for older adults, especially for people with significant multimorbid conditions. And that might mean people that are a little bit younger, too. And so it’s not so much about proxies, having a proxy or deciding, you know, sort of what type of care I want; if I were seriously injured or something like that, this is almost bigger than that. It’s stepping back and saying ‘what matters to me fundamentally when I think about what brings me joy?’ And one of the ways that I asked this question to people is ‘On a good day, what does a really great day look like for you?’ And then it’s like, ‘Well, you know, I was able to go to the park, and I was able to push my grandchild on the swing, and the sun was shining.’ And all of a sudden we realize right now the goals, the values, coming out are time with family and being functionally being functionally capable, right, to push them. So you’re already gathering values based on what a good day looks like. So that’s another way to think about it. It’s like, on a really great day, how would I feel?

[21:34-21:46]

Glickstein: Well, one more time, please tell us how can we find My Health Priorities online, which can also be printed so that you can do it with pencil or pen. Where can we find that great site?

[21:47-21:51]

Hladek: Absolutely. The website is MyHealthPriorities.org.

[21:53-22:35]

Glickstein: That’s MyHealthPriorities.org. I want to thank you Dr. Melissa deCardi Hladek, assistant professor at Johns Hopkins University School of Nursing. This has been a critically important conversation for me personally, for the people that I love, and most importantly our listeners who can begin to think about this and go online and check it out. Do it solo, do it with someone, do it with a friend, do it with people who will engage in this conversation — because I think setting priorities about what we want and who we are will provide for not only a fuller health care encounter, but probably also make us feel clarification about what really matters in our life. Thank you so much for joining me today.

[22:36-22:37]

Hladek: Thank you.