Author + information
- Published online June 24, 2019.
- aDepartment of Medicine, Division of Cardiology, Duke University Medical Center, Durham, North Carolina
- bDepartment of Medicine, Division of Cardiology, Northwestern Memorial Hospital, Feinberg School of Medicine, Northwestern University, Chicago, Illinois
- ↵∗Address for correspondence:
Dr. Haider Javed Warraich, Department of Medicine, Division of Cardiology, Duke University Medical Center, 2301 Erwin Road, DUMC 3485, Durham, North Carolina 27710.
Heart failure is not an isolated event that occurs in a patient’s life but rather an unwanted companion that, once embedded, remains for the rest of life. We have yet to discover the biologic pathway that will fully restore ventricular function and in turn restore an age-normalized life expectancy without the influence of heart failure. Heart failure can be a pernicious presence that results in abrupt changes in health, uncertain longevity, and challenged quality of life. We applaud and stridently advocate for optimal use of our surfeit of guideline-directed evidence-based drug and device treatments for heart failure with the expectation that the natural history will improve. But for many patients, the inexorable course of heart failure leading to death happens all too frequently. Many patients reach stage D heart failure, where additional treatments are limited and palliative care and hospice become important and appropriate patient-centric therapies. We should never consider a referral for palliative care or hospice as a surrender; rather, it is an opportunity to provide relief, improve quality of life, and show empathy. These are among the noblest attributes of our calling as physicians.
Hospice is a benefit provided by Medicare for patients with a serious illness and an expected survival of approximately 6 months. Hospice provides “expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes,” and care for the family as well (1). Depending on their clinical need, hospice care can be provided at 4 levels: 1) routine hospice care is the most common and is provided at the beneficiary’s residence; 2) general inpatient care is provided for patients who require 24-h direct nursing care for symptom management and can be provided in a hospital or other medical facility; 3) continuous home care is provided between 8 and 24 h a day for short-term symptom management intended to maintain patients at their home during a crisis; and 4) inpatient respite care is provided temporarily for the patient’s primary caregiver in a medical facility.
In 2016, a remarkable 48% of all Medicare decedents were enrolled in hospice and recent years have seen growth in the proportion of patients receiving hospice care with a principal diagnosis of cardiovascular disease (1) (Figure 1). Although patients with cardiovascular disease accounted for one-third of all deaths that year, only 19% of hospice patients had a primary cardiac diagnosis, whereas 27% had cancer. Patients with cardiovascular disease, however, accounted for a similar proportion of hospice spending (20%) compared with cancer (20%). The median days that patients with any cardiovascular disease receive hospice care is 30 days, a duration that is longer than the life expectancy of patients with heart failure who are discharged to hospice from the hospital (11 days) (2).
For heart failure, identifying when life expectancy is <6 months is daunting. The biomarker of death does not exist; thus, the decision to consider hospice care is based largely on judgment, clinical assessment, and most importantly, patient preferences. For these reasons, many patients with heart failure discharged to hospice may disenroll from hospice before death, otherwise known as a “live discharge.” Reasons for live discharge can include abrupt medical emergencies, unplanned hospitalizations, elective revocation of hospice to receive alternative therapies, and improvement in prognosis. A live discharge is considered a metric of poor-quality hospice care and can be indicative of poor risk calibration for those with advanced heart failure. Despite this awareness, we have not previously understood the root causes or associated circumstances that prompt live discharges from hospice in patients with advanced heart failure.
In this issue of JACC: Heart Failure, Russell et al. (3) use a multimethod approach to elicit factors that lead to heart failure patients disenrolling from hospice. The authors analyzed data from a diverse home hospice agency in New York City between 2013 and 2017, 8% of whom had a principal diagnosis of heart failure (n = 1,498, 57% female, 50% nonwhite). One-third of heart failure patients experienced a live discharge, a proportion much higher than for patients with cancer (23%), dementia (23%), and stroke (18%) and similar to patients with pulmonary disease (32%). Most patients with heart failure were enrolled in home hospice from the hospital (55%), and 40% were bed-bound at enrollment.
Hospitalization accounted for 50% of all live discharges, followed by elective revocation (9%) for nonpalliative treatments such as implantable cardioverter-defibrillator insertion or left ventricular assist device implantation and pacemaker upgrades. Over time, the number of live discharges actually increased, driven by an increase in patients who were disqualified because of an improvement in prognosis from 2% in 2013 to 7% in 2017. The authors performed a qualitative study of 19 hospice providers to better understand the patient experience. The major takeaway: living with heart failure can be akin to being blind-folded on a roller coaster. Hospice providers describe patients feeling “better…sick…better.”
Limitations of this study include the limited generalizability given that these data are from a single home hospice agency in New York City. Furthermore, they lacked outcomes of patients who disenrolled from hospice, which would be of considerable interest. The authors did not have socioeconomic data that could further elucidate factors that drive disenrollment.
Prognostic estimation is central to decision making in patients with serious illnesses. Although several risk scores have been developed to aid clinical decision making, their utility in clinical practice remains limited, and the majority of patients with heart failure are referred too late for palliative care and hospice (4). This study by Russell et al. (3) further highlights the imperfectness of hospice in meeting the needs of many patients with heart failure. Hospice is paid for on a limited per-diem basis, yet the timing of greatest need for care in those with advanced heart failure might not align with the ideal window of reimbursement for needed services (5). Unless hospice agencies are provided greater financial flexibility to tailor care to high-need patients or extend care for others, we will continue to see many patients retreat from hospice. The educational gaps in hospice care are disconcerting, if not frankly troubling; some patients expect 24/7 bedside care, whereas others have no expectations of care. Clearly, more education is needed if hospice is to deliver the kind of empathetic patient-centric care our patients need. Culture and the social determinants of health become increasingly relevant at the end of life. In the current study, nonwhite race was associated with hospitalization, and lack of a caregiver was associated with elective revocation of hospice. Cultural competency in communicating with patients is an essential skill throughout the span of medical care, but especially so in serious illnesses.
As physicians, we escort our patients through the entire arc of illness. Along the way, there are many wins, but the toll of the disease is inescapable, and death continues to be inevitable. There may be a silver lining to the unpredictability of death, for it fits with the mystery of life. What is needed is end-of-life care that adapts to the plasticity of heart failure and the vagaries of risk prediction. In that context, we should seek to optimize both a better quality of life and an empathetic quality of death.
↵∗ Editorials published in JACC: Heart Failure reflect the views of the authors and do not necessarily represent the views of JACC: Heart Failure or the American College of Cardiology.
Both authors have reported that they have no relationships relevant to the contents of this paper to disclose.
- 2019 American College of Cardiology Foundation
- National Hospice and Palliative Care Organization
- Warraich H.J.,
- Xu H.,
- DeVore A.D.,
- et al.
- Russell D.,
- Baik D.,
- Jordan L.,
- et al.
- Allen L.A.,
- Matlock D.D.,
- Shetterly S.M.,
- et al.
- Warraich H.J.,
- Taylor D.H. Jr..,
- Casarett D.J.,
- et al.