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Time Stamps

  • 05:03 Deep Dive 1: How do you approach guideline-directed medical therapy of heart failure with reduced ejection fraction in a frail older adult?
  • 12:55 Deep Dive 2: When is a guardian needed and what is the process for obtaining guardianship?
  • 29:30 Deep Dive 3: How do you re-evaluate GDMT in a frail older adult once an adverse event has occurred?
  • 34:27 Reflections
  • 38:06 Recap

Extended Interviews

Show Notes

  • DEEP DIVE 1: How do you approach guideline-directed medical therapy of heart failure with reduced ejection (HFrEF) fraction in a frail older adult?
    •  STRONG-HF Trial 
      • Usual care vs. More intensive initiation and titration of GDMT:
        •  Intensive arm: 
          • More likely to be on GDMT by 3 months
          • Less likely to be readmitted at 6 months
          • Lower mortality rate at 6 months
      • Note: The average age of patients in the STRONG-HF was 62 years old 
        • NO patients in their 90s 
        • Frailty was not considered
    • But why does age matter?!
      • Physiologic changes 
        • Lead to more pronounced side effects from medications
        • Frailty
          • May worsen side effects
            • NOT part of normal aging 
              • BUT does occur more frequently with aging
    • So how do we get frail older adults on GDMT?
      • Consider using “class effect” 
        • One drug from each class:
          • Beta-blocker
          • ACEi, ARB, ARNI
          • MRA (Spironolactone)
          • SGLT-2 Inhibitor
        • Timeline: May take longer (Over a couple of months!) 
      • But which class of GDMT do you start first?
        • Depends on patient presentation:
          • Afib w RVR → Rate control agents (Beta-blocker)
          • Pulm edema/volume overload → Afterload reduction (ACEi/ARB)
        • Consider which side effects they can tolerate!
        • Other GDMT to prioritize based on clinical content:
          • On a diuretic + K supplement → Spironolactone (K sparing)
          • High BP + stable K → ARBs 
            • ARBs > ACEi
              • No cough or angioedema
              • Easier to transition them to an ARNI
          • Borderline BP → SGLT-2i 
            • Less of an effect on blood pressure!
              • CAUTION: Be careful about starting SGLT-2i in someone who may not be able to report side effects, such as UTIs or Fournier’s Gangrene!
      • GOAL: Maximally tolerated doses of GDMT in older adults!
        • NOT target doses of GDMT
          • May have to start slow
          • Be careful about side effects
          • Consider what caused the HF in the first place
    •  
  • DEEP DIVE 2: When is a guardian needed and what is the process for obtaining guardianship?
    • What is an un-befriended older adult?”
        • Lacks decisional capacity
        • No pre-existing advance directive
        • No family, friends, or legally authorized surrogate to assist with decisions
      • Solutions for these patients are limited…consider guardianship
    • When is guardianship needed? 
      • Last resort!
        • Patient loses almost all of their rights
        • Consider these options before guardianship:
          • Healthcare power of attorney (healthcare proxy)
          • Next of Kin (depending on what state you live in)
          • Behavioral change
          • Systemic change
      • Consider guardianship when…
        • Concern that a patient lacks competency
          • May be with or without healthcare proxy
            • For patients with a healthcare proxy, guardianship may STILL be needed if patient consistently makes unsafe decisions despite recommendations and WITHOUT understanding the consequences
          • Reminder: 
            • Capacity: Functional determination of whether a person can make a specific decision at a specific time
              • Assessed by clinicians 
            • Competence: More global assessment and is sometimes called global capacity.
              • Judge determines.
            • Check out the CORE IM episodes on capacity, Part I and Part II
      • Action needs to be taken to protect the person’s safety
        • Person is refusing to allow this action
          • They are often unaware of their own impairment
      • Efforts to intervene using Power of Attorney/Health Care Proxy/Next of Kin have been attempted but have been unsuccessful—or, there is no Power of Attorney
    • What is the process to obtain guardianship?
      • Anyone may file a petition for guardianship on a patient’s behalf
        • Complete form describing reason 
        • Includes a fee
        • Several week+ process
      • What should the clinician do while waiting on the guardianship process?
        • Document decisions made on patient’s behalf
        • Work collaboratively with other clinicians 
    • Who becomes the guardian? 
      • May be a family member or someone else who knows the patient and is willing to take on this role
      • If none of the above available, a court appointed Adult Protective Services social worker, a county worker, a lawyer, or even a professional guardianship company can be assigned
        • Cons: 
          • Don’t know the patient
          • No medical background
          • Not physically at clinical site 
    • Once a guardian is obtained, what does this look like in practice?
      • Clinicians often STILL feel like the main decision maker for patients
      • Guardians should utilize substituted judgment when making decisions
      • Guardians are supposed to submit big decisions they are making for patients to a judge for review
        • Examples – code status, facility change
        • May take a long time
          • Checks and balances system
        • Clinician has to wait on judge and guardian who do not even see the patient
      • Guardians are supposed to keep record of everything they are doing for the patient and submit this at regular intervals
        • Extent to which this occurs and is monitored is unknown
          • Critics think there is no oversight in the guardianship system and argue it should be shut down
      • Guardianship is regulated at the state level
          • Significant variation from state to state! 
            • Example – many states do not allow guardians to change a patient’s code status without a court order 
      • Recommendation: If you have immediate concerns about neglect or abuse, you should file a report with Adult Protective Services. You can go here to file a report.  
      • Important principle of guardianship: People with guardians should be involved with decision-making as much as possible. Their opinions should always be respected. The extent of this involvement will depend on the specific decision.
    • How might we avoid guardianship?
      • Encourage patients to document a power of attorney or health care proxy early!

 

  • DEEP DIVE 3: How do you re-evaluate GDMT in a frail older adult once an adverse event has occurred?
    • In heart failure with improved EF, the American Heart Association recommends continuing GDMT 
    • However, in patients who have had an adverse event or depending on their priorities for their care, you can consider de-prescribing 
    • If making changes, go slow and closely monitor for any signs of decompensation

Transcript

Dr. Ali Trainor: Welcome to Gray Matters, where we unpack how medical management is rarely black or white.

Dr. Jason Freed: And we go on deep dives along the way! I’m Jason Freed, a hematologist at Beth Israel Deaconess medical center.

Dr. Ali Trainor: I’m Ali Trainor, a pulmonary and critical care attending at Mt. Auburn Hospital, and today we’re also joined by our friend and colleague, Dr. Emily Cetrone.

Dr. Emily Cetrone: Hi, I’m a geriatrician at the University of North Carolina, Chapel Hill. 

Dr. Jason Freed: You know Emily, I bet, as a geriatrician, I imagine you have some experience working in gray areas.

Dr. Emily Cetrone: Yeah, I definitely do but there was one case that really stands out to me – it’s a particularly challenging case of heart failure. This patient actually lives at the nursing home where I work, and I have learned a ton along the way. 

Dr. Jason Freed: Can you tell us a little bit about what you do at the nursing home?

Dr. Emily Cetrone: Sure! So, I take care of both patients that are there for rehab after a hospital stay, as well as patients who are actually living there as residents. And for these patients, I’m their primary care doctor. 

Dr. Ali Trainor: That’s so interesting because it seems like especially with the short term patients you’re dealing with the challenges of both the inpatient and outpatient world.

Dr. Emily Cetrone: I am! And that makes it really unique, but also so challenging. The patients are definitely more closely monitored than they would be at home, but the rehab patients can be pretty sick, and we have far fewer resources than most hospitals. I think the most significant difference to point out is that the nursing ratios are so much lower than we see in the inpatient setting. Like at my rehab, there’s often like 20 rehab patients for every nurse.

Dr. Jason Freed: Can you tell us about meeting your patient? 

Dr. Emily Cetrone: Sure! She was 91 years old and I initially admitted her for rehab after a heart failure hospitalization, where she was found to have a newly reduced ejection fraction. She was discharged on an aspirin, a statin, carvedilol, spironolactone, losartan, empagliflozin, and Lasix. Which were ALL new! Prior to this admission, she didn’t take a single medication. 

Dr. Ali Trainor: Man, that sounds like a ton of new meds, but I actually just listened to the CORE IM 5 pearls episode on GDMT for heart failure and they delved into the STRONG-HF trial which showed that it’s safe and I think actually better to just gets all these meds on early, so it’s a lot but makes sense, right?

Dr. Jason Freed: Yeah maybe we could play a clip from that episode and remind ourselves what that STRONG-HF trial found?

Dr. Eugene Yurditsky: What the investigators did is they said, let’s compare usual care to GDMT initiation, and this was a multinational trial. Or let’s randomize patients to a very aggressive protocolized approach to GDMT initiation and titration. And what they said is that they wanted by two weeks patients who were discharged with a diagnosis of heart failure from the hospital to be on full dose GDMT. As the punchline, what the investigators found is that looking at 180 days, the rate of heart failure readmissions and mortality as a combined outcome was lower. And it was also really impressive about the study is that if you look towards 90 days to see which patients or how many patients were actually on full dose GDMT, you’ll find that somewhere between the forties to fifties percent mark at, at about two weeks, people were on full dose beta blockers, full dose ACE inhibitors or ARBs. Whereas by contrast, people who were randomized to usual care we’re talking about 5% or less. So that really informs us that we’re pretty bad at getting people onto full dose GDMT therapy.

Dr. Jason Freed: Okay, so takeaway from Dr. Eugene Eurditsky, for the most part, safe and reasonable for this patient to have been started on all these meds while they’re admitted. And sounds like with usual standard of care patients are often undertreated with these life-saving medications

Dr. Emily Cetrone: Right, and for someone who was robust and independent, I may not have thought that much more about it, but with the frail 91 year old that was actually in front of me, it did give me pause.

Dr. Ali Trainor: Yeah, did you have other concerns about her?

Dr. Emily Cetrone: Well, turns out, she was declining at home, family was reporting some cognitive impairment, she couldn’t do some of the things she used to be able to do, so we felt pretty sure she had dementia. 

Dr. Jason Freed:I see how this is getting more complicated than just heart failure!

Dr. Emily Cetrone: Yep! Exactly! And on top of that our communication with her was really challenging. She spoke a less common dialect of Chinese so there was no interpreter readily available for us and her family wasn’t always available either. 

Dr. Ali Trainor: Okay so she’s got new HF, likely dementia, you can’t communicate with her, has 7 new meds, and is now she’s coming to rehab.

EC: Yep, and though she seemed very stable, she had only been on all of these medications for a couple days. So even though we know the data on GDMT, I did wonder if applying it to this patient would be any different. Which led me to Deep Dive 1. How should we approach GDMT in this frail 91 year old with likely dementia? How do we balance the greater risk of possible side effects with potential benefit? 

Deep Dive 1

Dr. Adam Moskowitz: We know how to treat advanced heart failure in someone that’s 50 years old without a lot of other comorbidities. But then thinking about how do we do that in someone that is quite comorbid advanced age and then has all these other communication difficulties and family and social issues going on, it gets much more cloudy in terms of knowing what is the best way to treat these people.

Dr. Ali Trainor:That’s Dr. Adam Moskowitz, a geriatric cardiologist at UNC.

Dr. Emily Cetrone: So, you know, lets go back to STRONG-HF, they did include patients up to the age of 85, but the average age was still just 62, and it didn’t include any patients in their 90s. 

Dr. Ali Trainor: Okay. Good to know. But why does age even matter? We all have taken care of patients in their 80s and 90s who are independent, taking care of loved ones, and, even running marathons. 

Dr. Emily Cetrone: Absolutely, but putting my geriatrics hat on, even those 90 year olds running marathons still have physiologic differences that are part of NORMAL aging, especially when you think about the effects of medications. And then it gets even more important, however, when you start to think about frailty, which is NOT a part of normal aging

Dr. Jason Freed:And I bet frailty is not mentioned anywhere in these trials. 

Dr. Ali Trainor: It makes you wonder what we would see if we did have studies on patients who were frail. 

Dr. Adam Moskowitz: You know, remember this is still a 91 year old female with advanced dementia, and so then it gets a lot more muddy. And that complexity is where I like to live as a clinician. These patients live outside of the guidelines. And that is really when you get to hone in and make a truly individualized decision and you get to be really patient centered. And I think that probably the best way to do it, depending on other factors is probably somewhat stepwise approach, but we get in a big hurry to start and stop medicines and sometimes that’s the right thing to do. Sometimes it’s not the right thing to do. And so making sure that we’re kind of putting it all into context is what I really love about these types of cases and these types of patients. And so in general, the way I think about it, it is first it’s a class effect. So if you can get someone on even just a little bit of all of the classes of GDMT. Beta blocker, ACE ARB or ARNI, spironolactone or some type of ARB, SGLT-2 inhibitor. If they can tolerate all of those, I slowly start them over a couple months. And the way that I typically see when I see patients in clinic and talk to them about it is that I tell them that for the next few months we’re going to be seeing each other very frequently and we’re also going to be monitoring labs quite frequently. And that’s distressing for people. You know, it’s a lot of doctor’s visits, a lot of medicines, it’s a lot of labs.

Dr. Ali Trainor: Yep, so important to set that expectation that we are going to be working hard to find that sweet spot for these patients. But that brings up for me something that often makes me hem and haw on rounds, which is, if we are worried about starting them all at once, how do we choose which one to start with? What does this look like in practice? 

Dr. Adam Moskowitz: It sort of depends and some of it kind of depends to me on what they presented with, you know, because if they presented per, let’s say if they presented with afib with RVR and you thought that tachycardia was really a big trigger for the cardiomyopathy, then I would tend to favor more nodal blocking, more rate controlling agents as well whenever, you know, feel like it’s safe to initiate those. As opposed to if they presented just with pulmonary edema, volume overload type symptoms depending on their blood pressure at baseline, that may be some of that benefits more from an acute afterload reduction. Something like in an ACE, ARB or an Entresto type medication, spironolactone, I tend to initiate the hemodynamic, the medicines with better hemodynamic effects, meaning the afterload reductions, the vasodilators, things like that. 

Dr. Emily Cetrone: You know, this was a great learning point for me because sometimes you get back an echo with a newly reduced EF and it can feel arbitrary of which GDMT to start.

Dr. Jason Freed: It sounds Like for this patient, who had never mentioned chest pain and who has no arrhythmia, the beta blocker might not be as key to get on board super quickly. 

Dr. Emily Cetrone: Or another way to think about it is which side effect can they tolerate more.

Dr. Ali Trainor: Totally! I’ve had my fair share of older or frail patients who were started on beta-blockers who frankly felt like crap or became pretty orthostatic. 

Dr. Adam Moskowitz: I love beta blockers. I’m a cardiologist, but I do find that especially in older patients, that they tend to produce a lot of adverse effects. So a lot of orthostasis, a lot fatigue. And so I do find that they tend to be poorly tolerated in older adults. It doesn’t mean that you shouldn’t try, but this is not the person that I’m going to try to titrate up to 200 milligrams of metoprolol because quite frankly, she’s not going to tolerate that very well.

Dr. Jason Freed: You know this makes me think a lot about the concept of  homeostenosis. This idea that as you get older the range for homeostasis is much more narrow, it gets stenotic, so these patients, They have a narrow range for their blood pressure and kidney function, things like that.

Dr. Ali Trainor: And shout out to one of our off-air producers Dr. Aaron Troy who brought up how beta adrenoceptor sensitivity decreases physiologically with age. So it’s like they almost have some intrinsic beta blockade, increasing risk for orthostasis.

Dr. Emily Cetrone: Right, but to emphasize, those challenges don’t mean the medications can’t work in terms of less heart failure readmissions or mortality, so it’s still worth a shot getting at least small doses of GDMT on board, even beta blockers. It can just take a lot longer! 

Dr. Ali Trainor: But you know, that’s hard because we know that each of these medications can have such benefit, so I just can’t get rid of that part of me that feels wrong to have any of them missing. 

Dr. Adam Moskowitz: And I think that everyone should give themselves some grace. We know what the appropriate medicines are. We know congestive heart failure is an interesting scenario because we know that there’s these four to six medicines that really work synergistically together and to help improve or stabilize cardiac function. And so we can get very laser focused on that with, and then we can sometimes can forget to take care of the patient that’s in front of us. And so I think that it’s important to remember that it’s not target doses of GDMT, it is maximally tolerated doses of GDMT, and that can be different for every patient.

Dr. Jason Freed: I love that reminder that it’s maximally tolerated GDMT. So we talked about beta-blockers in older patients, how do we think about the other GDMT to prioritize?

Dr. Ali Trainor: Yeah, so if the patient is that if you have a patient that’s on a diuretic and getting potassium supplements, maybe try prioritizing the spironolactone. It’s potassium sparing and then we can see if we can minimize some polypharmacy. 

Dr. Emily Cetrone: And then if there is still blood pressure and potassium room, it’s probably better to favor that ARB or ARNI over the ACE inhibitor since we know that ACE’s can cause cough and then we don’t have to worry about the risk of angioedema.

Dr. Ali Trainor: And then with the SGLT-2 inhibitor, that is a good one if the BP is on the lower side, because it does not affect BP as much as the other GDMT. 

Dr. Jason Freed: So if I were to summarize our Deep Dive 1, my takeaway is we are finding the sweet spot of maximally tolerated GDMT because we know it has proven benefit for heart failure hospitalizations and mortality and get as many classes of medications on board. In terms of which ones to prioritize particularly in our patients that fall outside table 1 from these guidelines, we want to think about what might have led to their heart failure in the first place and what side effects we may see.

Deep Dive 2

Dr. Ali Trainor: Wait, so Emily going back to your patient, she was actually doing okay with all of these medications, right? And she was going to go back to her PCP and cardiologist for ongoing management. 

Dr. Emily Cetrone: That’s true! And she was also doing well with therapy, but she was reaching her last covered rehab day from medicare. This is where things started getting trickier. We started discharge planning, but no one could get in touch with her family. 

Dr. Ali Trainor: Man, so were you able to get in touch with anyone?

Dr. Emily Cetrone: Eventually, it took weeks, but we got in touch with the daughter-in-low who told us not only that the patient could not go back to live with them but they didn’t want to be involved in her care at all. 

Dr. Jason Freed: So she had no one?

Dr. Emily Cetrone: She had other children living in a different state but none of them were willing to take on her care either.  

Dr. Jason Freed:Man, that is heartbreaking!

Dr. Ali Trainor: Yeah. And on top of that she likely had dementia, and I’m guessing you were still unable to successfully communicate with her?

Dr. Emily Cetrone: Right, and she had no prior documents detailing her wishes either. It was really hard. So what we were going to do? No family and no advance directives. But then, as it usually happens.

Dr. Jason Freed: Oh no. 

Dr. Emily Cetrone: Yep! It was late Friday afternoon, and her potassium came back at 7.5. 

Dr. Ali Trainor: Yikes!

Dr. Emily Cetrone: Yep! So we admitted her to our inpatient geriatric service where she also had a pretty severe AKI.

Dr. Jason Freed: Oh, man, how did she end up doing?

Dr. Emily Cetrone: Well medically, her kidneys and potassium improved pretty quickly, but the hospital stay was hard on her in other ways. 

Dr. Ali Trainor: I can imagine. I’m guessing with the new environment, communications challenges, no family. She probably ended up with some delirium?

Dr. Emily Cetrone: Yeah, I mean at the nursing home, even with the communication challenges and dementia, she really was a vibrant woman. She liked to walk around with some help. She was always smiling and would do this little dance move with her hands. But when she came back she was confused and withdrawn and even quite upset at times.

Dr. Ali Trainor: That must be upsetting to see such a stark change.

Dr. Emily Cetrone: It was so hard to see. And even with that, there was also something that had been weighing on me ever since I saw that K of 7.5.  What if she had coded from that?

Dr. Jason Freed: Oof, she was still full code?

Dr. Emily Cetrone: No one had previously ever had that conversation with her. And her family hadn’t wanted to engage in it either. And at this point, she was an unbefriended older adult

Dr. Jason Freed: Like that is an actual real term that exists in the literature?

Dr. Emily Cetrone: It is! An unbefriended older adult lacks decisional capacity, doesn’t have a pre-existing advance directive, and doesn’t have any family, friends or a legally authorized surrogate to assist with decisions. 

Dr. Ali Trainor: Yeah, that is so hard and so sad. So then what do we even do in this situation? What do we do about her code status?

Dr. Emily Cetrone: That’s a great question. And, at least the next step felt somewhat clear to us. She needed a guardian. She’s 91 with dementia, has no family, has not appointed a power of attorney, and we’re worried about her potentially coding.

Dr. Ali Trainor: Yeah, I think most of us would probably agree. She needs a guardian. But you know, I see this come up in other situations and there seems to be a lot of confusion and lack of clarity in other cases about who needs a guardian? So for Deep Dive 2 can we look more into who actually needs a guardian and what is the process actually like?

Bryan Godfrey: Whenever I’m thinking of guardianship, I’m thinking of it as a last resort kind of thing. You kind of have to remember that there’s only two ways in our society where you can be denied most of the rights that you would otherwise have, and one of them is to be incarcerated and another is to be deemed incompetent and be given a guardian. You lose almost all of your rights. 

Dr. Ali Trainor: That’s Bryan Godfrey, a social worker with UNC geriatrics. 

Bryan Godfrey: So there may be clever ways around it where we solve the problem without having to go through the whole legal process. Can we solve it with a healthcare power of attorney? Can we solve it with a behavioral change or a systemic change? And that would be the ideal situation. Try to identify the specific problem we’re facing, try every non guardian way we can to solve this problem. And if we still can’t solve it, that’s when we bring in a guardian.

Dr. Ali Trainor: That makes sense, I can think of a lot of patients who fall into this category and don’t have capacity for certain decisions and we can invoke a power of attorney or it’s sometimes called a healthcare proxy, for things like procedures, chemotherapy and most medical decisions, but what about in your patient who has dementia AND she doesn’t have a HCP?

Dr. Emily Cetrone: Right, it’s a little different, because we weren’t only concerned about certain days, like if she were delirious. And it wasn’t only certain decisions. We were really concerned about her competence, and so she didn’t have a health care proxy, for her, we really needed a guardian.

Dr. Jason Freed: Ok, I get why your patient needs a guardian, but I’m a little confused. Can we go back? Because it sounds like we’re saying that if someone is incompetent but has a healthcare proxy, sometimes they may still need a guardian. Why would someone need a guardian if they have a family member who is their healthcare proxy?

Dr. Emily Cetrone: Yeah! That’s a great and difficult question. So I can tell you about a different resident at the nursing home with me and I think it sort of illustrates that point. So this patient had dementia but he had no awareness of any of his deficits. He thought he was fully capable of being independent and really wanted to still make all of his own decisions. But some of those decisions were really putting him in harms way. For example, prior to this, he had never before done online gambling, but was going online and was putting himself at risk of losing tens of thousands of dollars. And he was also great about taking his daily medications prior to getting dementia, but then started to have dangerous episodes where he missed some medications and doubling up on others but didn’t want any help from anybody. So even though his son was his appointed HCP, he still petitioned for guardianship because he felt he needed this in order to protect his father’s health and finances. 

Dr. Ali Trainor: So, if I’m understanding this correctly, it seems like a guardian only needs to be appointed if it’s contentious? So like if the patient is incompetent and is making unsafe decisions for themselves without understanding the risks and they’re going against the healthcare proxy recommendations, and the healthcare proxy is acting in their best interest, then they’ll need guardianship? But if the patient doesn’t have capacity and they’re likely NOT competent but is going along with recommendations by the healthcare proxy and they healthcare proxy is using sound judgment then we can just leave it?

Dr. Emily Cetrone: Yeah, that’s a really good summary. And that later example is by far most of my patients with dementia.

Dr. Jason Freed: Okay. So then what, what is the process for obtaining guardianship for the small number of people who need it? 

Bryan Godfrey: And it’s really complicated as most things are, especially when the law is involved. You go down to the magistrate’s office and file a motion for guardianship. And there’s a fee for it. It’s like, I don’t know, a hundred bucks, couple hundred bucks. And you have to fill out a fairly complicated form and sign off and say, this is what’s happened to them and this is why they need someone else to step in and manage things for them. And you try to be as detailed as you can. You try to present whatever evidence you can when you file the petition. 

Dr. Jason Freed: And during the several weeks while this whole process is taking place, what do you do with the patient in front of you?

Dr. Emily Cetrone: Well, that’s the part that felt so distressing to me. I really felt alone while we were waiting for this court date and the whole guardianship process. 

Dr. Jason Freed: I guess it felt like all the decisions were on your shoulders?

Dr. Emily Cetrone: Yeah, it really did! But at least day to day, she did seem happy. She joined for beach ball volleyball and getting her nails and hair done. She also loves to do these little dance moves with her hands and give big hugs. 

Dr. Ali Trainor: That’s so beautiful, I love that.

Dr. Emily Cetrone: I did too, but there was still a lot that felt uncomfortable. I couldn’t change her current code status without a guardian and I was also needing to be making medical management decisions for her daily when I didn’t really know anything about her.

Bryan Godfrey: We know they don’t have capacity. We’re pretty sure they don’t have competence, but the process is still in the works. There’s no healthcare power of attorney. What do we do? And I honestly think the answer ideally would be, well, let’s postpone this until we have a clear legal representative to tell us what’s okay and what’s not. But if it can’t be postponed, then I would assume that the answer would be the attending decides, and you document very well, this is what I considered and this is what I decided. This is why. Here’s who I tried to reach out to. This didn’t work. If we’re ever making a difficult decision, I will document, I reached out to this social worker and they agreed that the standard of care should be this or that a reasonable person would want this. And I do think that adds to the weight of your decision, to say, this wasn’t just me in my own head deciding I actually sought consult, and these people agree with me that this is what needed to happen.

Dr. Emily Cetrone:You know, that was really helpful to hear. I was actually having a lot of informal conversations with people I worked with about what’s the best approach. What should I do. And I just didn’t realize it really was part of this whole process. Maybe I wasn’t just alone in making these decisions.

Dr. Ali Trainor: Yeah, I think it’s always reassuring to know you’re not puppet mastering alone and that it’s valid to document it. Okay, so moving on. The court hearing happens, then, who gets to actually be appointed as a guardian?

Bryan Godfrey: We’re talking about signing over all of someone’s rights to another person, and that may or may not be someone they even know. I mean, if it’s family, that’s one thing. Right. But a lot of times it’s a social worker from DSS, it’s an adult protective services social worker. Like Orange County, that’s what they use. Sometimes it’s a lawyer, sometimes it’s someone who works for the county and some of them will be subcontracted to companies that are professional guardianship and case management companies.

Dr. Jason Freed: Wow so most of the time, these guardians are people who don’t even know the patient. May or may not have a medical background! And they’re not there with you in the hospital or nursing home or clinic. They’re this invisible external force that you now need to involve with decision making.

Dr. Ali Trainor: Yeah. Absolutely, they’re the one making the decision, but your patient is right in front of you. So how do you continue to make patient centered decisions, when oftentimes the guardian is someone who is court appointed and doesn’t know the patient on an individual level? 

Bryan Godfrey: There is a push to involve people in decision making as much as possible. It’s great to communicate with this guardian, assuming they’re doing the right thing. But what about the patient? Are we still involving them? Yes! The goal, the gold standard is to involve them in every decision in so far as they are able to participate.

Dr. Jason Freed: So Emily, you have a guardian. You are trying to involve the patient despite the communication barriers. Do you now have that sense of relief you were looking for? You’re not having to make all these decisions alone?

Dr. Emily Cetrone: Honestly, not as much as I was hoping for! So yeah, she had this guardian, but it still felt like I was the one making every decision, even though then I would just call the guardian and give them a a regular update. 

Dr. Ali Trainor: Yeah, that’s how I feel in the ICU with my guardian interactions, where aside from major decisions, I’m doing my best to make what seems like the most appropriate medical decision and then call the guardian after the fact to give them the update.

Dr. Jason Freed: Yeah, I guess, we still make most of the medical decisions, but it’s the values-sensitive decisions, like would they want chemotherapy that has a fair number of side effects and a not great chance of response, those are the ones we involve the guardian for. 

Dr. Emily Cetrone: Exactly, but then the other part that was challenging and not quite the relief I was expecting is that changing her code status turned out to not be that simple. 

Bryan Godfrey: Let’s say someone has a guardian and you’re trying to make an important decision, changing their code status. Why would that take so long? Well, it’s kind of by design. They don’t want the guardian to just suddenly make major decisions in a person’s healthcare with no consult, with time to think about it, with no time to react and catch it if they’re behaving inappropriately. So they purposely build in some stops into the system. One of them is they have to go to the judge and say, ‘Hey, this is the plan I’m hoping to make in their care. Would you sign off on it?’ You know. It’s like a checks and balance system. And then the judge will look at it and say yes or no. But the other side of that of course, is that now much like doctors getting MyChart messages, you’ve got these judges getting stacks and stacks of can they change to this facility? Can they go DNR? And the judge doesn’t know these people, and now they’ve got to do the chart review and they’ve got to decide, and then they’re legally responsible for that decision. Yeah, it’s a big deal.

Dr. Ali Trainor: Hearing that, just makes me so angry. I get why the system is there, to protect people, of course, but as an ICU doctor, when people are languishing on a vent, which I don’t know, may that’s a Massachusetts thing, patient’s just languishing, waiting for a guardian who doesn’t know them to have a hearing with a judge who doesn’t know them so that they can decide if I can do the medically appropriate thing for the patient in front of me and not have this person be resuscitated and intubated. It makes my blood boil!

Dr. Emily Cetrone: Yeah, it’s so frustrating! And the guardian system is clearly far from perfect. I should mention that some of this is very state dependent, which is a problem in of itself.

Dr. Ali Trainor: Hm, okay, that just makes me think which state can I move to so that the guardianship process is faster.

Dr. Jason Freed: Yeah, this is frustrating from multiple angles. I see the idealistic side of it, which is that takes a while and there are checks and balance in order to protect vulnerable people who can’t protect themselves, but on the other hand, we would remiss not to mention that sometimes the oversight is less than perfect.

Bryan Godfrey: As the guardian, you’re supposed to keep records of everything that you do, every penny of their money that you spend, every decision you make, you’re supposed to keep a record of. And then I believe you actually submit that and it’s reviewed on a regular basis. But at minimum it would be something that if anybody like the judge requested it, that you would be required to send it to them to prove that you’re doing what you said you would be doing. I think when it comes down to the practicality of it, how much is this actually enforced? Do they actually check even if you send it to them, do they actually open the file and read through it and check every line? I don’t know. But I know what the critics are saying is no, that there’s virtually no oversight in this system at all, and it should be shut down because of that. 

Dr. Emily Cetrone: Wow, all of this is sounding pretty grim, but this is the system that we have so I do think it has helpful just to be aware of all the different aspects at play.

Dr. Jason Freed: Yeah and I guess I wonder, is there another good alternative? Is there another country that has figured it out? Or is it like what Winston Churchill said about democracy? The democracy is the worst form of government except for all the other ones we’ve tried.

Dr. Ali Trainor: Yeah, seriously, listeners from other countries, let us know what other processes are there! 

Dr. Jason Freed: So, to summarize what we learned about guardianship. It’s a process that is put in place if someone does not have an appointed power of attorney or health care proxy and globally lacks competency. It can be a lengthy process of paperwork and to get a court date. If there isn’t a family member who can be guardian, the appointed person could be a lawyer, social worker or someone from a guardianship agency.

Dr. Emily Cetrone: And we still try our best to make patient-centered decisions, involving the patient as much as possible and suggesting what may be most reasonable. But, keep in mind, bigger decisions like code status or facility changes may have to go beyond the patient and the guardian and go back to the judge.

Dr. Ali Trainor: Yeah I think for me, my biggest takeaway is to get more of my patients to have health care proxy or power of attorney officially documented. I mean, heck, I’m bringing power of attorney forms to my next family party. Everyone needs to do this. I mean sure there might be good guardians out there but if we can get documented power of attorneys, we could really avoid some of this.

Deep Dive 3

Dr. Jason Freed: Okay so bringing it back to your patient, you have guardianship, you’re working on code status decisions, you’re also trying to manage her acute medical issues, mainly her heart failure and, if I remember where we were, she was just discharged off of all of her GDMT because of the hyperkalemia and renal failure. So what’re you going to restart? 

Dr. Emily Cetrone: Yeah that’s a great question and exactly what I was wondering, but also got a repeat echo that showed her EF had improved from 20 to 50%. 

Dr. Ali Trainor: Man! That’s impressive! Aggressive GDMT fulfilling its promise, even in a frail 91 year old. 

Dr. Emily Cetrone: Exactly, it was awesome that the GDMT worked, but on the other hand, those same medications possibly led her to be hospitalized, where she had pretty bad delirium. So I wasn’t really sure what to do about adding back medications at this point.

Dr. Ali Trainor: Okay, I see why you brought this case to the gray matters table. It sounds like we should do a third Deep Dive: How should we re-evaluate GDMT in a frail elder? What do you start and stop especially after someone had an adverse event? 

Dr. Adam Moskowitz: We don’t really know did she get better because she was going to get better on her own and that this was somewhat acute heart failure and somewhat self-limited, or did she get better because of the afterload reduction, because of the neurohormonal effects of the medications.

Dr. Jason Freed: But I feel like we should restart something so her EF doesn’t go back to 20%? I mean I guess she could have stress induced cardiomyopathy or something else that would have recovered, but we need to find a sweet spot to keep her out of the hospital. 

Dr. Ali Trainor: Yeah agreed, we know GDMT  decreases heart failure hospitalizations and that’s a pretty patient centered outcome, especially considering her last hospital stay made her delirious and not like herself.

Dr. Jason Freed: So, Emily, how are we going to go about re-evaluating each of these medications?

Dr. Emily Cetrone: Well I felt like I was starting over again, which felt very overwhelming. But even though I couldn’t have an actual “what matters most” conversation with her, I could assume a few things. That she did not want to be short of breath when she’s trying to dance or sleep. Or too tired to walk around the hallways. I probably could go as far and say that she doesn’t want to go back to the hospital. So I did think there was benefit in trying to get her back on these medications even with the possible risks. 

Dr. Adam Moskowitz: It may be a little bit of an educated trial and error a little bit because when we don’t know how these seven medications interact within people or within one specific person, especially in the background of other comorbidities and other medications. And so it can be different. But I tend to think for people with congestive heart failure that are more interested in symptom control, more interested in palliative based metrics, that the diuretics obviously are going to be top of the list in terms of managing congestion and volume overload, but then also making sure that we’re avoiding hypertension, making sure that we’re doing everything we can to promote better cardiac output with some of these afterload reducing medicines are going to still benefit from a symptomatic standpoint as long as we’re not getting to the point where it’s causing adverse effects. Because adverse effects is what has landed her in the hospital a couple different times now. And so that would be my first priority is avoiding adverse effects and treating the problem that we have, not the problem that we might get in this situation that would be worsening heart failure once again.

Dr. Ali Trainor: Okay, so Emily what did you end up doing?

Dr. Emily Cetrone: So her blood pressures were persistently elevated, so I prioritized the ARB and thankfully, there was no hyperkalemia. I then tried to add some spironolactone, but her potassium started to creep back up, so I ended up just stopping the spironolactone. She didn’t really need the diuretic, so honestly, I have just let things be for now. 

Dr. Adam Moskowitz: The more we talk about this case, and the more I think about it and hear about it is that my assumption is if I was taking care of this patient that with all the difficulties that we have going on, my goal is to not harm this person. So if she’s not actively having symptoms or showing early signs of deterioration, I’m going to try to keep the ship where it is rather than attempting to titrate medicines. And certainly if she’s hypertensive volume overload, tachycardic, I’m going to react to those manners in the traditional ways that we would. But if she’s doing okay, I’m going to allow that to be okay and do my best not to expose her to any additional risk on the basis of interventions that are really not, she’s not really within the guidelines for most of those interventions. It doesn’t mean that we can’t consider them and offer them, but in this context it feels like that you might be risking harm more than benefit.

Dr. Emily Cetrone: And she is doing okay for the most part. She seems to have no shortness of breath or chest pain, we got a court appointed guardian and she’s now has a DNR/DNI, we’ve also been able to keep her out of the hospital, her blood pressures have been good, and her potassium has stayed normal.

Dr. Jason Freed: It seems like you’re finally in a really good spot!

Reflections

Dr. Emily Cetrone: We are, but it still feels uncomfortable at times, because I know that at some point she’s not going to be okay. I am worried about her getting admitted either for heart failure or for another adverse event and how scary and overwhelming that all will be for her. I still wish I could have an actual goals of care conversation with her. 

Dr. Jason Freed: What specifically do you want to talk about with her? What is most uncomfortable in this gray space? 

Dr. Emily Cetrone: I think I was really hopeful that once I got the guardian it would be okay, I can relax a bit moment.  Where they’re almost like a family member that I can bounce every decision off of, but that’s really hasn’t been the case. It’s valuable for big decisions, but in reality, for the day to day still feels on me, and I need to decide what is best for her.

Dr. Jason Freed: Okay, yeah, I see why that’s so hard. I’m now realizing, I didn’t really appreciate this thing I have all the time with my patients where like say I’m seeing them. So like I’m seeing them for MGUS, we’ve followed for years, it hasn’t changed maybe you don’t need to keep getting labs. And I get to see their reaction – like yeah that makes sense I want less labs and appointments and I get that affirmation. I’m not expecting them to make the medical decision but they get to tell me yeah that fits with my goals or, no that doesn’t fit.

Dr. Emily Cetrone: Yeah, I really appreciate hearing that experience. Because I know that adjusting doses of olmesartan and deciding how often to get labs are not major decisions, but it’s hard to not ever get any of that feedback from her!

Dr. Ali Trainor: Of course! It’s so much easier when you have a patient who can tell you straight up “I hate peeing so much” or “man, that beta-blocker made me feel so woozy”, but she can’t always do that so are you supposed to do here?

Dr. Jason Freed: Yeah, great question, as doctors I think we often gravitate towards metrics we know how to titrate around, like blood pressure, but patient-centered ones matter too, probably even more, so what do you do here when it’s really hard to get a sense of those patient-centered factors? When they can’t tell you yes I’m breathing better since starting this medication.

Dr. Emily Cetrone: I mean it’s such a great question and something I’m still working on. I think, reflecting on all of this, is that one of the really beautiful things about working in a nursing home is that it’s like an ongoing home visit, so I can get those extra patient-centered data points. Even if I don’t have an appointment with her I see her in the hall walking around or I can pop into her room for a hug or even a quick dance with her hands. And after almost two years, I do feel like I know her well enough to at least get a sense of how well she is doing. 

Dr. Jason Freed: That’s is so cool that you get to titrate to how happy she looks on a semi weekly basis! Ali and I can’t do that in our pulm and heme clinics.

Dr. Emily Cetrone: That’s a really good point, I do feel pretty lucky about that.

Dr. Jason Freed: So I guess I’m trying to think about how to globally reflect on this case and it would be so easy to paint this case as a tragedy – this patient has no family, she’s in a nursing home with dementia, she has new heart failure, she has a court appointed guardian, but now that we’ve talked about it so much, you know, I think of it differently.  She’s living her life surrounded by people, doing things that she enjoys, like dancing, she’s not limited by shortness of breath or chest pain. 

Dr. Emily Cetrone: I didn’t always see it that way when we started, but after months of going through this case with you guys I really appreciate that perspective and think you are right!

Learning Point Recap

Dr. Ali Trainor: So even though a lot of this still remains gray, let’s recap some of our learning points. 

Dr. Jason Freed: In Deep Dive 1, we learned that even though frail, older patients are not perfectly captured by the trials, it still is worth attempting GDMT. It just may take a little longer, and you have to be even more watchful of side effects.

Dr. Ali Trainor: In Deep Dive 2, we learned about guardianship, which is something that may be sought out when there is concern about competence and there isn’t a health care proxy, or there is a health care proxy but the patient is making unsafe decisions for themselves without the capacity to do so. 

Dr. Emily Cetrone: And even with a guardian, our goal is to still involve the patient as much as possible. It’s also important to mention that there are state specific policies around guardianship that affect the scope of their decision making.

Dr. Ali Trainor: And finally, in Deep Dive 3, we discussed that although most of the time with heart failure with improved ejection fraction, the goal is to keep as many these life-saving medications on board as possible, in certain cases, especially with frail patients,  it is okay to think about patient-centered outcomes and palliative based metrics and okay to go slowly and monitor for changes

Dr. Jason Freed: And that is a wrap for today! If you wanna learn more about the guardianship process, check out our youtube channel where we linked more of the interview with our expert social worker Bryan Godfrey. If you found this episode helpful, please share with your team and colleagues and give it a rating on Apple podcasts or whatever podcast app you use! It really does help people find us! 

Dr. Ali Trainor: If you have a case you’d like to bring on air, please email us at hello@coreimpodcast.com. Thank you Ariella Coler-Rielly for the accompanying graphic and Daksh Bhatia for the audio editing. Opinions expressed are our own and do not represent the opinions of any affiliated institutions.

References