Take-aways The importance of shared decision-making in advanced HF cannot be overstated given the complex myriad of treatment options that confront patients, families, and caregivers. Shared decision-making incorporates the perspective of the patient, who is responsible for articulating goals, values, and preferences as they relate to his or her health care. Shared decision-making incorporates the perspective of the clinician, who is responsible for narrowing the diagnostic and treatment options to those that are medically reasonable.

Heart failure (HF) affects 2.4% of the adult population and over 11% of the expanding population is more than 80 years old. Existing therapies slow, but infrequently reverse, disease progression. As a result, the prevalence of symptomatic HF has increased, including a prolongation of the advanced phase of the disease.

Progression of HF is difficult to predict, as patients may have periods in which they are stable, followed by intervals of illness, after which they improve but to a level likely lower than baseline. Nevertheless, as the disease progresses, a subset of patients will develop persistently severe symptoms despite maximum guidelines-directed medical therapy (GDMT). Various terminologies have been used to describe this group of patients who are classified as having ACCF/AHA stage D HF; the most common terms are "advanced HF," "end-stage HF," and "refractory HF."

Within this group, patients for whom the advanced options of mechanical support (ventricular assist devices) and heart transplantation are not offered—usually due to age, comorbidities, or other factors—are considered for palliative care. Of course, the principles of palliative care apply throughout the continuum of HF, but when all other options are gone, palliative care becomes the best therapy.

The 2013 ACCF/AHA guidelines acknowledge the challenge of determining when a patient has moved into stage D HF.¹ The new guidelines include clinical clues that may assist clinicians in identifying patients who are progressing toward advanced HF.

The Importance of Shared Decision-Making

Kathleen L. Grady, PhD, APN, is the administrative director of the Center for Heart Failure at Northwestern Memorial Hospital. She was co-chair of the committee that recently produced a scientific statement from the AHA on decision-making in advanced HF.²

She and her colleagues emphasized that the importance of shared decision-making in advanced HF "cannot be overstated given the complex myriad of treatment options that confront patients, families, and caregivers. We have offered a roadmap for when and how to have conversations with patients to support shared decision-making."

This process must occur in the context of uncertainties in prognosis, multiple and often competing outcomes, and barriers to communication. Although the promotion of shared decision-making may seem daunting to busy practicing clinicians, the authors attempted to provide guiding principles and simple tools that can help set future expectations, anticipate major decisions, and promote productive conversations.

Values, Goals, and Preferences

According to the scientific statement, shared decision-making is a process through which clinicians and patients share information with each other and work toward decisions about treatment that are chosen from medically reasonable options aligned with patient values, goals, and preferences. Ideally, it's an iterative process that evolves over time as a patient's disease and quality of life change.

Thus, attention to the clinical trajectory is required to calibrate expectations and guide timely decisions. Yet, prognostic uncertainty is inevitable and should be acknowledged in discussions with patients and families.

Palliative care is crucial and requires an interdisciplinary team approach to optimize symptom management and quality of life. It does not necessarily exclude any medical therapy and should take into account physical, psychosocial and spiritual needs, and patient/family preferences.

The focus of the palliative approach in HF is symptom relief with particular attention paid to dyspnea, agitation, and pain. However, in the setting of Stage D HF, the optimal approaches to lessen these symptoms as well as other components of palliative management have not been rigorously studied; there are no large randomized controlled trials or observational studies to guide the clinician, meaning there is no recommendation in the 2013 ACCF/AHA HF guidelines based on Level A evidence.

Still, as Dr. Grady pointed out at the 2012 AHA Scientific Sessions, good palliative care has been shown to lead to better quality of life, lower rates of depression, and even greater survival despite patients receiving less aggressive end-of-life care.

In a 2012 snapshot of the United States, the Center to Advance Palliative Care reported that during the last 10 years palliative care has been one of the fastest growing trends in health care. The number of palliative care teams within hospital settings has increased approximately 148%, from more than 600 in 2000 to more than 1,600 today. Yet, they group notes recent studies show that most people living with a serious illness experience inadequately treated symptoms, fragmented care, poor communication with their doctors, and enormous strains on their family caregivers.

Specifically:

• 1 in 4 patients report inadequate treatment of pain and shortness of breath.
• 1 in 3 families report inadequate emotional support.
• 1 in 3 patients report that they receive no education on how to treat their pain and other symptoms following a hospital stay.
• 1 in 3 patients are not provided with arrangements for follow-up care after hospital discharge.

Admittedly, the Scientific Statement by Dr. Grady and colleagues finds the role of palliative care in patients with advanced HF has been far less developed than in cancer and further work to document the synergistic effect of adding palliative care to the clinical care of patients with advanced HF is needed. Until then, the authors said, the statement is a "call to action," not only to clinicians directly responsible for facilitating shared decision-making but also to those on a national level who would reform and restructure the healthcare medical system to truly support patient-centered care.

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References

1. Yancy CW, Jessup M, Bozkurt B, et al. J Am Coll Cardiol. 2013 June. [Epub ahead of print] http://content.onlinejacc.org/article.aspx?articleID=1695825
2. Allen LA, Stevenson LW, Grady KL, et al. Circulation. 2012;125:1928-52.

To listen to an interview with Kathleen L. Grady, PhD, about diagnostic and treatment options for difficult HF patients, visit youtube.cswnews.org or scan the QR code. The interview was conducted by Peter A. McCullough, MD, MPH.

Keywords: Depression, Palliative Care, Quality of Life, Heart Failure, Disease Progression, Heart Transplantation, Patient-Centered Care

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