Palliative Care in HF: Practical Advice From the HFSA

Though the obstacles are many, it’s worth the effort to provide palliative care to patients with heart failure, according to a new paper from the Heart Failure Society of America (HFSA). The consensus recommendations offer clinicians and institutions clarity on what that care involves and how to deliver it.

Led by Sarah Chuzi, MD (Northwestern University Feinberg School of Medicine, Chicago, IL), the document was published online recently in the Journal of Cardiac Failure.

Senior author Haider J. Warraich, MD (Brigham and Women’s Hospital, Boston, MA), told TCTMD that for many years, proponents of palliative care in HF felt the need to convince their colleagues of its value. Data have begun to accrue in support of that, he said, and “we have been successful in that we have made the case for palliative care as a community, and it’s reflected in our guidelines,” which give it a class 1 recommendation.

Yet even now there are few resources to guide what palliative care entails in HF or when it should start, said Warraich. Their goal in pulling together the consensus-based recommendations, he specified, was to provide a “blueprint for clinicians and practices and health systems to think about how they are going to, or how they could, incorporate palliative care.”

HFSA President Michael Felker, MD (Duke Clinical Research Institute, Durham, NC), pointed out to TCTMD that palliative care has traditionally been associated with oncology but also stands to play a critical role in HF and other chronic diseases.

With this document, the organization wanted to offer practical information, Felker said. “A lot of guideline documents often are . . . not very pragmatic in terms of how somebody could actually use something in day-to-day practice. We wanted to create something that was authoritative, but also pragmatic.”

Currently, there are shortages of specialists not only in palliative care but also in HF, he specified. The good news is that “palliative care is something every clinician can help with [and] participate in,” said Felker.

HF is a disease “characterized by significant symptom burden, prognostic uncertainty, frequent hospital admissions, and high cost of care, particularly at the end of life,” Chuzi and colleagues note. Further complicating matters is the “availability of complex high-risk/high-reward treatment options,” such as left ventricular assist devices and heart transplantation, that necessitate “prognostic awareness, patient-and family-centered shared decision-making, and caregiver support.”

Palliative care, recommended by US and European HF clinical guidelines but sorely underused, addresses these needs by seeking to relieve suffering, enhance quality of life, and assist with complex decision-making at all stages of disease, they say.

There’s no one model that’s going to work for palliative care across the country or across the world. Haider J. Warraich

A key issue has been the difficulties inherent to prognostication, Warraich explained. “Our patients don’t have discrete steps in their journey, in the sense that the decline, if you may, of a patient with cardiovascular disease can often be incremental, it can often be almost invisible, and it can be hard to predict. And so it is hard to know when is the best time to integrate palliative care and oftentimes when we think about it, it’s already kind of late,” with patients so close to the end of life that they don’t reap the benefits.

This isn’t to say there’s a lack of interest among clinicians, he added. “A lot of our cardiologists, I think they want to do the right thing for their patient: they want to have important conversations, they want to talk about advanced care directives, [but] . . . they might feel like they just don’t have the right training to be able to have those conversations or talk through some of those details.”

The Elements of Palliative Care

Importantly, this consensus document is not “prescriptive,” Warraich noted, but rather provides guidance that can be applied in diverse contexts.

“There’s no one model that’s going to work for palliative care across the country or across the world,” he said. “Palliative care delivery might look different at a large tertiary care medical center with a ton of resources. Maybe there, you can afford to have a dedicated specialist cardiac palliative care service, and there are some places that do. But in other places, it may be that the primary cardiovascular team has to take on more of that responsibility [by] identifying patients at high risk and having some of those basic conversations and relying on the specialist only for more advanced aspects.”

The authors of the HFSA document set out a model of integrated heart failure palliative care that consists of four main components:

• Clinical: primary versus specialty skill sets, referral criteria, monitoring and optimization of quality of life, and care specific to special populations (eg, transplant patients)
• Operational: models of care delivery that maximize alignment of clinical resources
• Quality measurement: clinical quality as well as patient and caregiver satisfaction, access to palliative care, and healthcare utilization
• Reimbursement: documentation and billing

Overall, “programs should leverage existing data to expand the integration of palliative care into HF care, iteratively improving systems and workflow through simultaneous contributions to the medical literature in this growing space,” the authors conclude, adding that patients and their caregivers increasingly desire “holistic, patient-centered care that incorporates principles of palliative care.”

Palliative care is something every clinician can help with [and] participate in. Michael Felker

Patients can derive autonomy and access to information as part of palliative care, as well as benefits like better quality of life. But they are not the only ones to see a positive impact, said Warraich.

Clinicians, too, can feel empowered by being able to provide palliative care to their patients, he explained. “A lot of our cardiologists, and our nurses and our nurse practitioners, are suffering from moral injury and burnt out because there are patients who are coming back to the hospital for the nth time, who aren’t really getting better despite maximal medical treatments and who may be getting care that they don’t want.”

At a system level, palliative care can help save money by preventing repeat hospitalizations, identifying which patients are most at risk of complications, and reducing unwanted treatment—all positives as payer models evolve, Warraich suggested. “Thinking about this as a solution that not only provides patient-centered care, but [also something that] could eliminate low-value care might be much more evident as we move forward.”

One common misconception, Felker agreed, is the view that palliative care only needs to begin just before death, around the time of hospice. “Those are obviously critical issues for palliative care, but really I think palliative care is much broader and really involves focusing not just on the outcomes like mortality that we talk about a lot, but also on burden of suffering, symptoms, [and] decision-making—those are things that need to happen in a much broader swath of our patient population than just the people who are at the very end of their life,” he said.

With this “upstream” approach, clinicians should clearly express why palliative care is helpful earlier on, advised Felker. “It’s a nuanced conversation with patients because sometimes when you bring up the idea of palliative care with patients, they often associate in their mind with end of life, too. So part of it is educating not just clinicians, but educating patients.”