Shared Decision-Making in Heart Failure

Transcript

This transcript has been edited for clarity.

G. Michael Felker, MD: Hi. I'm Michael Felker from Duke University, and I'm pleased to be joined today with my colleague, Stephanie Barnes, for this Care Cues conversation. Today, we're going to talk about the way shared decision-making can affect the quality of care and hopefully improve outcomes for our patients with heart failure. Stephanie, it's great to be here with you.

Stephanie G. Barnes, MSN, AGPCNP-C, CHFN: Thanks for having me.

Felker: I think a key thing in this decision-making process is understanding from the patient, what are you worried about? From your perspective as a nurse practitioner, what sort of things are patients concerned about? What worries do they have when they get a new diagnosis of heart failure?

Barnes: That's a really good question, because patients at time of diagnosis oftentimes get diagnosed at different intervals. A patient who is diagnosed during an inpatient hospitalization may handle that same diagnosis very differently from someone who's hearing this diagnosis in an outpatient setting. I predominantly have experience in the inpatient setting, where patients are very concerned about (A) being in the hospital and (B) being attached to bells, whistles, and IVs that oftentimes supersede the concern about why they're in the hospital.

Felker: I think it's kind of different from another diagnosis like cancer, where patients think if that you tell somebody, you have cancer, they grapple with it; it's a pretty severe thing. I think for heart failure, there's a lot of education involved because a lot of people aren't that familiar with the diagnosis even though it's very common. So we want to educate them that this is a serious condition that you're going to have to manage, and it has a lot of implications for your life.

On the other hand, even though "heart failure" is kind of a scary name, it's not a death sentence. So I think the first thing is framing what their problem is in a way that's accurate and helpful, but not overwhelming. That's the very first step of shared decision-making.

Barnes: How does shared decision-making improve the standard of care in heart failure?

Felker: That's a really important question because we talk about the standard of care, for example, in heart failure is to be on these four classes of drugs — that's guideline-directed medical therapy. And as clinicians, we often think, I prescribed these drugs. But of course that's only one step in the step of prescribing the right drug to the right patient at the right dose at the right time. The patient has to get the prescription, pick it up at the pharmacy, take it the right way, and monitor for side effects. There's so much about optimizing treatment for heart failure that's not just, I wrote a prescription (or these days, I typed a prescription).

So much of it is about getting communication between the clinician and the patient around their shared goals and the rationale for all these different things. Some things that we're going to do are going to be based on trying to help the patient feel better, like adjusting their diuretics, and there are lifestyle things about diet, sodium intake, and fluid intake. Patients usually are pretty receptive to that because they want to feel better. That's something they're really interested in.

The second part though is the guideline-directed medical therapy for heart failure. What can we do to actually slow the progression of heart failure, because we know it's a progressive disease? For some patients, it's a real struggle. We often see people in the hospital who, when you talk to them, it's pretty clear that they haven't really been taking their medication (or at least not as prescribed). What's your approach to that situation, and how we can work with the patient to do better?

Barnes: A very humanistic approach to a conversation is important. A lot of times, you can build trust with patients just by listening and understanding their perspective — giving them the benefit of the doubt to have a conversation, to understand why is it that they're unable to take their medication.

Let's use this as an example. A patient who was in the hospital and was prescribed the four pillars of guideline-directed medical therapy gets discharged and comes back a month later with volume overload. You find out that they never picked up their medicines from the pharmacy.

Instead of labeling the patient as noncompliant, which I think oftentimes can happen, perhaps that isn't the case. It's understanding from the patient's perspective whether there was a barrier to getting the treatment that was prescribed.

Felker: I think what you said is really important: getting down to the details of what the barriers are. This sometimes asking questions like, How do go to the pharmacy? What pharmacy do you use? Who goes and picks up the medicines? Do you do it yourself? Because sometimes it's access. Sometimes the patient doesn't have a ride. Sometimes the copays are too much, but the patient was embarrassed to bring up the fact that the copays were too much.

Other times, it's that the patient can get the pills, but taking them is too confusing; they can't keep straight what they're supposed to be taking. Obviously the solutions to these things are all very different. So empathetic listening, trying to really drill down on what the barriers are for that specific patient, and how you can help them problem-solve are important. Are there tools or decision aids that you think could be particularly useful for these kind of conversations?

Barnes: The Colorado center for shared decision-making [Colorado Program for Patient Centered Decisions] has a decision aid that's available specifically for heart failure medications. And the American College of Cardiology also has cardio smart tools that are available for patients or clinicians. So I have found that decision aids are very helpful when they're utilized.

You can imagine that there are barriers to using decision aids. Maybe patients don't have a smartphone. Then we may not have the ability to get that decision aid to them. So it's nice to supplement that with written decision aids if at all possible. But I think we as a heart failure community can embrace the use of those decision aids that are available to us in patients who need them.

Felker: Are there ways you assess whether this conversation is going to be successful in getting to our shared goal, or there is there still work to do?

Barnes: Meeting a patient where they are from an emotional and knowledge level is really important. One of the best ways for us to ensure that a patient is participating in the conversation is to be mindful. We want to be mindful of someone's learning style. We definitely want to take into account what someone's health literacy level is so that when we deliver education to them, we're doing so in a way and at a level that they can understand it. Also, asking patients whether or not they want to know everything about their condition now, or whether they need short snippets of information to be presented to them, can be really helpful.

Another tip is to supplement education from a conversation perspective with anything that can be written or is visual. Perhaps the use of an interpreter for patients who need interpreter services is really important, so that we are mindful of keeping the patient at the center of that conversation.

Felker: And often the patients are pretty sick when we're asked to have these conversations, or when this all comes up. People are in intensive care unit with shock or pretty sick with heart failure, and we're saying, I want to talk to you about heart transplant or a left ventricular assist device. It's pretty overwhelming for a person who isn't sick, but it's a really overwhelming conversation for patients. How do you approach that? Because I think this is where the stakes are really high. There's a lot of challenges for effective shared decision-making because of the overall milieu and where the patient is in the course of their disease.

Barnes: It's important that we let patients know that they have a say in what the options are. We owe it to them to tell them what we think as the medical team, and what we think that they are candidates for or not. But ultimately, the end decision is theirs, and it's important for us to have a conversation with them in that time frame.

I will also add that when you're having critical conversations with patients, it's really important to ask them if there's somebody that they want to be there for the conversations to help support them. This is critical information, it's really difficult to process, and it's a lot of information at once. Is there somebody that we need to have here to help reinforce that conversation with the patient so that they can make the best decision for themselves?

Felker: I think that's a really critical thing that we could often do better probably than we do. Because, as you mentioned earlier, you can sort of tell when people are totally overwhelmed, and often you need to bring more support people to the table to help them.

Barnes: For patients who have resolution of their symptoms, how do you reinforce to them the importance of continuing the therapy that's been prescribed? What do you typically see as tools that we can use to have conversations with patients about that?

Felker: I think this is where trust is really important. It's easier if you have a relationship with a patient. It's harder if you're meeting them for the first time. Be honest with them about what you're trying to accomplish with the treatments and the rationale behind them. Because it involves not just the clinician getting the patient to do what the clinician thinks is the right thing for them to do, but both parties understanding why they chose A and not B — what the rationale is and what the trade-offs are. All of those things are central to successful adherence to therapy, both taking therapy correctly and also continuing it and not stopping it in 3 months when you feel better. All of those things are really important. So I see shared decision-making as like the bedrock on which a lot of these other things rest.

Barnes: This has been a really wonderful conversation. As we wrap up, Dr Felker, I'm curious to know: Are you optimistic about the future of heart failure care and heart failure treatments that are available for our patients?

Felker: Yes, Steph. This has been great. And I would say I've never been as optimistic in my whole career as I am now. We have so many more therapies that are proven effective for patients across the spectrum of heart failure — not just heart failure with reduced ejection fraction, but now some therapies for heart failure with preserved ejection fraction. Having such a big toolbox creates its own challenges, because — and I think this really resonates with a lot of things we've talked about today — how do we deploy those in the best way possible based on shared decision-making with our patients? What about you? Are you an optimist?

Barnes: Absolutely. And I have to say that the heart failure community as a whole is a wonderful community to be a part of, because there's a shared goal to move this field forward. I hope that 10-15 years from now, we'll start to see incremental improvements in patients' lives as a result of the hard work that's been put in for many, many years.

Felker: Steph, this has been great. Thank you so much for joining me today.

Barnes: Thanks for having me.

Felker: And thank you again for joining us on Care Cues.

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