Triggers for Palliative Care in Advanced HF: Many Opportunities

Not just disease progression but also patients’ own psychosocial needs can inspire referral to specialist care, experts agree.

Triggers for Palliative Care in Advanced HF: Many Opportunities

When managing patients with advanced heart failure (HF), a diverse array of factors can indicate it’s time to initiative palliative care, as a new paper highlights.

“Currently, patients with heart failure are, unfortunately, either never referred to specialist palliative care or in a delayed manner, resulting in many missed opportunities to address the all-around suffering that exists among this patient population,” lead author Yuchieh Kathryn Chang, DO, and senior author David Hui, MD (both from University of Texas MD Anderson Cancer Center, Houston), told TCTMD in an email. This is despite the fact that both US and European guidelines have voiced support for early use of palliative care in HF management, and despite evidence showing it produces gains in quality of life and mental health.

For the paper, published in the Journal of the American College of Cardiology, researchers asked nearly 50 clinicians with dual expertise in cardiology and palliative care to take part in a Delphi study, which provided a structure for developing consensus.

Through this process, study participants identified numerous criteria: some related to HF itself (such as the need for advanced therapy or presence of comorbidities/complications), some related to time (wherein referral is done at the time of diagnosis or prognosis), and others related to the patients’ needs (eg, symptom burden and stress over decision-making).

“Having a set of consensus criteria may help standardize the referral process and allow for improved allocation and utilization of the scarce palliative care resources to better address this issue,” said Chang and Hui.

Joseph G. Rogers, MD (Texas Heart Institute, Houston), one of the experts who contributed toward the criteria, agreed that palliative care, from his perspective, “is still an underappreciated and underutilized therapeutic approach for patients with heart failure.”

There’s less awareness of palliative care in the setting of heart failure, as opposed to oncology, said Rogers. Additionally, “physicians often confuse palliative care with hospice. They’re two very distinct approaches to taking care of patients with advanced illness,” he stressed to TCTMD.

With hospice, comfort care and support are provided to patients who have a terminal illness and an expected life span of 6 months or less.

In contrast, “palliative care is not just reserved for patients at the end of life,” Chang and Hui explained. “Rather it is a specialty that uses a holistic interdisciplinary approach to help support patients throughout the disease trajectory, providing symptom management, psychological support, addressing the social aspects and caregiver for needs, and assist with care planning.”

Disease, Time, Needs

Chang, Hui, and colleagues reached out to 46 clinicians, including physicians, advanced practice providers, nurse practitioners, and consultants practicing across five continents. Over three rounds of online surveys, participation rates ranged from 89% to 96%. The experts were asked to rate 67 criteria according to whether they should inspire referral of a patient with advanced HF to a palliative care specialist.

In the end, the panelist reached consensus on 25 “major” criteria that, in and of themselves, would justify referral. These fell into six main categories:

  • Advanced/Refractory HF, Comorbidities, and Complications (with the most agreement among participants on cardiac cachexia, multiorgan failure, having an additional noncardiac life-threatening disease, being resistant or unable to tolerate guideline-directed therapies)
  • Advanced HF Therapies (most notably being eligible for advanced therapies but not receiving them and use of mechanical circulatory support)
  • Hospital Utilization (≤ 2 hospitalizations or ≤ 2 emergency department visits within the past 3 months)
  • Prognostic Estimate (estimated life expectancy of 6 months or less)
  • Symptom Burden/Distress (greatest consensus was seen for refractory symptoms requiring palliative sedation, severe emotional or physical symptoms, and severe spiritual or existential distress)
  • Decision-Making and Social Support (patients, their families, or care teams requesting palliative care, assistance in discussing goals of care and other planning, conversations about withdrawal or de-escalation of life-prolonging interventions, and discussion or referral to hospice)

Their hope, said Chang and Hui, is that knowledge of “these criteria would help facilitate the identification of patients who may potentially benefit from specialist palliative care referral—keeping in mind that these criteria would need to be further tested and customized to each institution based on available resources.”

A combination of disease-, needs-, and time-based criteria can be informative, they noted. However, “we do want to highlight to general cardiologists and HF specialists that a shift towards needs-based criteria may allow for earlier integration of specialist palliative care—and this could promote a more-holistic approach to patient care across the disease trajectory from diagnosis to death,” the authors added.

A lot of times clinicians don’t stop . . . and really begin to delve into the emotional, psychosocial challenges that these patients are going through. Joseph G. Rogers

Rogers pointed out that in cardiology, a very data-driven field, the disease-based aspects of advanced HF tend to receive the greatest attention, at the expense of other concerns. “You’re looking at very objective data and the clinical course that a patient is going through and making real-time decisions about what appropriate therapies are,” he said. “A lot of times clinicians don’t stop, though, and really begin to delve into the emotional, psychosocial challenges that these patients are going through. We don’t oftentimes probe into the difficulties that advanced illness has on families [or] think about the spirituality aspect.”

Heart failure specialists do address some of these needs on their own, added Rogers, but at some point, palliative care specialists can provide more-specific care. “There is a remarkable skill set that this group of healthcare providers has,” thanks to their training, that enables them to “take deep dives into the things that patients are concerned about,” he observed. “They are able to access resources that most of us don’t have access to, or honestly don’t have the experience or the time to get [for] a patient.”

Clinicians may be reluctant to seek this, for fear it looks like they’re somehow failing to manage their patient’s disease, but there shouldn’t be a stigma to consulting palliative care, said Rogers. Much like cardiac surgeons or electrophysiologists, these specialists can be included as members of the heart failure team.

Sarah Badran, MD, and Sangjin Lee, MD (both from Spectrum Health, Grand Rapids, MI), writing in an accompanying editorial, describe palliative care specialists as “both the interpreter and amplifier of the patient’s voice and wishes. They help the patient and family to understand their illness and treatment options within the context of their individual life and goals.”

Both they and the study authors express surprise that even among a group of experts with overlapping knowledge of cardiology and palliative care, so many of the “major” triggers for referral focused on the disease-related aspects that appear later in the HF trajectory. This may mean the support arrives too late for patients to fully benefit. Needs-based criteria, on the other hand, are appropriate triggers at any point during the course of the disease, Badran and Lee say. To capture this complexity, they envision a “holistic scorecard” that incorporates the various criteria on a level playing field.

  • Chang YK, Allen LA, McClung JA, et al. Criteria for referral of patients with advanced heart failure for specialized palliative care. J Am Coll Cardiol. 2022;80:332-344.

  • Badran S, Lee S. Even in heart failure, integrating palliative care and aggressive medical therapy is a thing. J Am Coll Cardiol. 2022;80:345-347.

  • Chang, Badran, Lee, and Rogers report no relevant conflicts of interest.
  • Hui has received grants from the National Cancer Institute.