Determining when a patient with heart failure is ready for referral to hospice can be challenging. The trajectory of heart failure is different than that of many diseases, like cancer. While cancer progresses in a linear fashion with a predictable decline, heart failure is characterized by episodic exacerbations punctuated by periods of stability. This relative unpredictability, combined with moments of perceived improvement, makes deciding the time to initiate hospice care challenging. Adding to the challenge is the fact that patients can die from progressive pump failure or sudden death. Current therapies are meant to prevent both while addressing symptoms and co-morbidities of heart failure.

During an exacerbation, it can be difficult to distinguish whether the patient's disease is worsening or whether it is being caused by other factors, such as a difficulty taking scheduled medications or a high dietary sodium intake. Making this distinction sometimes requires evaluation by a heart failure specialist, who, through a detailed evaluation which may include cardiopulmonary stress testing, can determine if the disease is worsening or non-adherence to the treatment plan is causative. Despite prognostic difficulties and acuity fluctuations, signs that the disease is advancing include:

  • Inability to tolerate medication due to hypotension, renal failure or other symptoms
  • Persistent symptoms of cardiac insufficiency at rest (NYHA classIV) despite adequate medication dosing
  • Ejection fraction < 20
  • Progressive cardiac dilation

Other complicating factors to consider include:

  • Frequent hospitalizations despite adequate outpatient medical management
  • Repeated implantable defibrillator firings
  • Multiple comorbidities
  • Non-adherence to recommended medical therapy

During the goals of care discussion, physicians and their patients may consider many therapies available to manage heart failure, including oral and intravenous medications, implantable devices and heart transplantation. It is appropriate to consider hospice when a patient is not a candidate for aggressive treatment options, when the burden to the patient and family outweighs the benefit of these interventions or when a patient seeks to forgo further hospitalizations.  

Shared decision making between the patient, physician and medical care team provides an opportunity to align medical advances with patient goals. Discussions should begin early in the disease trajectory. During the course of treatment, these plans and conversations should be revisited as the patient's goals may change. It is never easy to know for certain when a patient is ready for hospice. By supporting the patient and their caregivers, watching for symptoms of disease progression, guiding patients and understanding their goals, we have the opportunity to provide the right care in the right place at the right time.

Rebecca Boxer, MD, MS, University Hospitals Harrington Heart & Vascular Institute is also an Assistant Professor of Medicine at Case Western Reserve University