Mending the Soul When the Heart Is Broken

Eric D. Adler, MD; Nicholas Wettersten, MD


J Am Coll Cardiol. 2017;70(3):342-343. 

Heart failure (HF) is a chronic disease of significant morbidity and mortality, with a 5-year prognosis similar or worse than most cancers.[1] The overall burden of disease is high: an estimated 5.7 million individuals in the United States are currently diagnosed with HF, a number that is expected to grow to >8 million by 2030.[2] Of these, an estimated 5% of patients have end-stage/Stage D HF, and have a significantly diminished quality of life (QOL).[3] Although a portion of these patients will receive a heart transplant or ventricular assist device, the majority of patients will die from or with HF. Thus, palliative care (PC) needs to play a critical role in the management of HF patients, earning it a Class I guideline recommendation.[4]

PC has been most extensively studied in the field of oncology. Multiple studies in oncology patients have shown that PC improves patient symptoms, improves QOL, and reduces costs.[5] One study remarkably showed that patients with metastatic non–small-cell lung cancer randomized to PC survived longer than those randomized to usual care.[6] Despite multiple studies in oncology patients, a clear need for PC interventions in HF patients, and its Class I recommendation, there is a paucity of research on the use of PC in HF patients and which interventions may specifically benefit the HF population.

In this issue of the Journal, Rogers et al.[7] performed the first randomized study of PC for HF patients in the outpatient setting: the PAL-HF (Palliative Care in Heart Failure) study. Over 3 years, 150 patients who were at high risk for mortality were randomized to usual care or usual care plus PC delivered over 6 months at a single institution with an established PC program integrated into its advanced HF clinic. The PC intervention consisted of a structured multicomponent program coordinated by a PC nurse practitioner in conjunction with a PC physician and a counselor. The primary outcome was QOL assessed by 2 different validated questionnaires with a specific focus on symptoms of depression, anxiety, and spiritual concerns. The authors found that the PC arm had significant improvements in both measures of QOL and across the domains of depression, anxiety, and spiritual well-being. There were no differences in rates of hospitalization or mortality.

The authors should be commended for performing a study that has long been needed in HF. Advances in medical therapies have led to improvements in mortality and symptoms, but prior studies usually focused on symptoms most directly related to HF, such as dyspnea, edema, and orthopnea. However, as shown in the present study and others, HF patients have a multitude of symptoms that affect different facets of their QOL, including pain, depression, and anxiety. Providing therapies that improve QOL is as important or even more important than reducing mortality for some HF patients, as studies have shown some patients will choose improved QOL over longevity.[8] Rogers et al.[7] have shown that PC delivers an aspect of care important to our patients and lacking from our medical armamentarium.

Considering the effect of the interventions applied in PAL-HF, it highlights that all practitioners should incorporate PC practices into their care of HF patients. The PC interventions used in PAL-HF were led by a PC nurse practitioner, but also involved a board-certified PC physician and sometimes a mental health provider; this amount of resource utilization is unlikely to be broadly available to all HF patients, as there are not enough practitioners available for the 5.7 million HF patients. As a result, it falls on the cardiologist primarily taking care of the HF patient to regularly incorporate PC modalities into his or her usual care of all HF patients and to identify patients progressing to Stage D or in Stage D that may benefit from a more intensive PC intervention. The Advanced Heart Failure and Transplant Cardiology training statement emphasizes a need for the advanced HF trainees to develop skills in primary palliative care, which are palliative care skills and competencies required by all care providers. This includes having fellows implement PC and goals of care discussions into their training and regularly take part in end-of-life/palliative care discussions.[9] This may be one of the most important educational experiences for the trainee, because in the trainee's career, he or she will need to utilize PC skills for patients who are not candidates for advanced therapies more often than care for patients with transplants or advanced therapies. Educating cardiologists in primary palliative care is particularly germane given the shortage of trained palliative care physicians nationwide.

Although PAL-HF takes a significant step forward in advancing the science and confirming what has long been believed about PC in HF, there is still significant further research needed. The interventions applied in PAL-HF were from an established PC team using a multicomponent approach. It is not clear from PAL-HF what specific PC interventions were applied. Certain PC interventions may be more effective than others in alleviating most HF patients' symptoms, whereas other interventions may be more focused to a specific population. Determining which PC interventions are more broadly helpful to HF patients (in other words, "learning what is in the palliative care syringe") can help non-PC practitioners regularly integrate these modalities into their practice. A practitioner could then refer specific HF patients to an advanced PC team to receive more advanced interventions or those beneficial to a specific population. Additionally, it is unknown if integrating PC earlier than Stage D may alter the disease trajectory; this concept would benefit from another randomized trial.

The PAL-HF study has helped to break ground in PC research in HF patients. It has taken an important and significant step forward in advancing the evidence of the benefits of PC in HF. The HF research community now must respond with further studies determining if there are specific interventions beneficial to the HF population, when to implement different strategies, and how to best integrate PC into our usual care of HF patients. Hopefully, with further research into PC, we can learn to better mend the soul when the heart is broken.