Abstract
The end of life for patients with end-stage heart failure is often characterized by pain, shortness of breath, and diminished quality of life, indicating a lack of adequate care necessary for patients to experience a good death. The vast majority of those who die from heart failure are 65 or older and potentially eligible for the Medicare Hospice Benefit. Yet, only about 10% of patients with end-stage heart failure actually enroll in hospice programs. Lack of enrollment into hospice has been attributed to a variety of factors including a lack of understanding of the availability of hospice as an option for those with heart failure. While improving models of care for patients with heart failure has been of great interest during the last two decades, little is known about the benefits of hospice as a model for care in patients with end-stage heart failure. Nursing must participate in research that explores options of either improving current models of care or developing new and improved models of care for patients with heart failure.
Heart failure is one of the most significant health problems in the United States, with high morbidity and high mortality. Over one quarter million American men and women die each year as a result of heart failure. 1 In fact, approximately 20% die within 1 year of diagnosis. 1 Those 65 years of age and older are most vulnerable to heart failure as incidence and prevalence increases with advancing age. 2 Of those who die each year from heart failure, 90% are 65 or older. 3
While researchers have made advances in the pharmacological management of heart failure, patients still experience significant pain, shortness of breath, and diminished quality of life near the end of life. 4 Results from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) indicated that over 70% of patients with heart failure perceived their quality of life as fair to poor during the last month of life. 5 Families reported that 64% of those with heart failure were either "extremely ill" or "very ill" during their last days of life, illustrating a poor quality of dying and death. 6 While the mean age of the majority of patients with heart failure in the SUPPORT study was greater than 65 and potentially eligible for the Medicare hospice benefit, 5 only 3% of patients participating in the study diagnosed with heart failure were participating in formal hospice programs in order to manage their care at the end of life. 6
Despite the fact that the American College of Cardiology and the American Heart Association recommended hospice care as appropriate to decrease suffering in patients with end-stage heart failure, 7 only about 10% of those with end-stage heart failure enroll in formal hospice programs. 8 When compared to lung, colon, breast, prostate, and ovarian cancer, heart failure was described to be equally "malignant" in terms of 5-year mortality and loss of expected life-years to all cancers except lung. 9 Patients with cancer are routinely referred for hospice care and comprise the majority of hospice patients nationally. 8,10 On the other hand, those with end-stage heart failure may be suffering unnecessarily at the end of life without the benefit of hospice care services.
Lack of referral of patients with end-stage heart failure to hospice has been attributed to a wide variety of factors. While patients with end-stage heart failure are considered to have a high mortality, they typically experience a relatively unpredictable course of illness characterized by acute exacerbations of symptoms rather than by the progressive decline typical of conditions such as cancer. 11 Moreover, the generally recognized 6-month prognosis prediction criteria used by the National Hospice and Palliative Care Organization 8 is insufficient when determining survival prognosis in patients with heart failure. 12 Results from SUPPORT indicated that for many with heart failure, a 6-month survival rate was predicted at 54% even within 3 days of death. 5 This factor highlights the complexity of predicting the likelihood of death within a preestablished time frame. Lynn and Forlini 13 agreed that for a variety of chronic illnesses (including end-stage heart failure), there is often no distinct terminal phase associated with the period just before death. For those patients with heart failure, death may occur as a result of a relatively sudden, unpredictable even such as cardiac arrhythmia. 12 Complexity of predicting death should not, however, be the rationale for inadequate referral for hospice care.
Besides the difficulty in prognoses of death, the low number of referrals to hospice may be attributed to other factors including lack of communication between physicians and their patients regarding preferences about resuscitation, 14 high preferences of patients with heart failure for resuscitation when compared to patients with cancer, 15 physician fear of consequences for inappropriate referral, 10,16 and lack of awareness of hospice as an alternative for heart failure patients. Additional reasons may be a lack of understanding (by providers and by patients) of the role of hospice in symptom management to improve quality of life at the end of life rather than to hasten death, or perhaps a misunderstanding of the language of the Medicare hospice benefit. Finally, providers often question their own ability to address the difficult questions surrounding end of life care with patients and their families. 18