When the American hospice movement began in 1974, its mission was based on noncurable cancer, a disease noted for its rapid and painful decline, and often inevitable death. But today, 62% of hospice admissions are for patients without cancer, according to 2008 data collected by the National Hospice and Palliative Care Organization (NHPCO).
Conditions that are often not terminal account for most non-cancer diagnoses: unspecified debility (a chronic "disease" diagnosis with no single major illness), dementia, and heart and lung diseases. Traditionally, "terminal" has meant the patient will likely die within 6 months if the disease runs its normal course. Medicare, which pays for 93% of hospice care, requires two qualified physicians independently agree that patients are terminal. But hospices often violate Medicare guidelines, and usually get away with it.
The practice of fast-tracking people without cancer into hospice palliative end-of-life care may save Medicare $2,309 per patient, but doing so is not always appropriate. New treatments and drugs, that didn't exist when the 1996 guidelines were written, now improve symptoms, prolong life and enhance its quality.
How Hospice Admissions Guidelines Were Developed
In 1996, the National Hospice and Palliative Care Organization (NHPCO) published "Medical Guidelines for Determining Prognosis in Selected Non Cancer Diseases." Using the best medical evidence at the time, NHPCO's criteria were a well intentioned attempt to enable hospices and clinicians to objectively decide when it was appropriate to refer patients for hospice care, based on a prediction that a patient had less than six months to live.
Hospice programs nationwide adopted these guidelines and used them as admission checklists to help decide if patients met admission criteria under the Medicare/Medicaid Hospice Benefit, which has paid for most hospice care since 1982. Hospice fiscal intermediaries similarly adopted most aspects of the guidelines in determining patient eligibility under Medicare.
Non-cancer Hospice Admission Guidelines No Longer Always Appropriate
Since 1996, quality research projects examining the validity of these prognostic criteria have shown that the disease-specific NHPCO guidelines, according to David Weissman, MD, director of the Medical College of Wisconsin Palliative Care Center, and editor-in-chief of the Journal of Palliative Medicine, "may be little better than a flip of the coin in determining whether a patient with end-stage heart or lung disease or dementia will survive more or less than six months."
For example, a key 1996 hospice admission guideline specified that if a heart disease patient did not respond to specific drugs–ACE inhibitors (e.g., Vasotec, Accupril, Capoten), diuretics, and vasodilators–they were likely hospice candidates. Now, however, optimal treatment includes both those medications and β-blockers, aldosterone and device therapies, which the 1996 criteria do not address.
In an article* published by the American Academy of Hospice and Palliative Medicine (AAHPM), physicians Gary M. Reisfield and George R. Wilson maintain that the use of medication and device therapies can change heart failure (HF) prognostic data, and that the disease follows an unpredictable trajectory which is highly modifiable by application of evidence-based therapies. "The 1996 NHPCO criteria are not predictors of 6-month mortality. Models will need periodic updating to control for continually evolving standards of HF care. At present, accurate prognostication remains problematic."
Another study, also published by AAHPM** showed that when using some of the 1996 guidelines in assessing whether COPD (pulmonary disease) sufferers were candidates for hospice, "...50% of the patients were still alive at six months, implying that the 1996 NHPCO criteria have a limited role in predicting six month mortality and thus should be used with caution in determining hospice eligibility..."
Another example: Hospices commonly use "ejection fraction," a measure of the quantity of blood pumped out of a ventricle with each heart beat, as a guideline in admitting cardiac patients: the lower the ejection fraction, the worse off the patient is. An ejection fraction at or below 20% means the patient is terminal, according to the 1996 NHPCO guidelines.
But that standard no longer applies in many situations. According to an article in the International Journal of Cardiology,*** a very low ejection fraction is not necessarily an accurate indicator. An ejection fraction below 20%, its authors write, "...is no longer a predictor of mortality." Cardiac patients with an ejection fraction even as low as 14% can lead active lives for years, thanks to new lifeline medications.
Hospice's Conundrum: Palliative Treatments Sometimes Cure
Hospice philosophy generally advocates treatment that neither hastens death nor attempts to cure the underlying terminal illness. The mission of hospice is only palliative, to provide comfort measures as a disease takes its course. Medicare does not pay for medicines and treatments that cure, so if a hospice provides them they must do so at their own expense--or make the patient pay. The entire hospice model is built around the premise that the patient is terminal, can't be cured, and will expire within six months. Hence, aggressive measures aren't needed.
But according to Cherie P. Brunker, MD, writing in the August, 2008 edition of the journal Home Health Care Management & Practice, medications developed since the 1996 NHPCO guidelines both improve symptoms and quality of life (i.e., they are palliative) and significantly prolong it (i.e., they are curative). That fact flies in the face of one of the foundational pillars of hospice: that terminally ill patients accept their fates and agree to waive cures and lifeline drugs and treatment.
The policy of some hospices is to refrain from dispensing any therapeutic medications and furnish only pain killers like Roxanol and MS Contin, and palliative agents like anxiety-reducer Ativan. Patients who want the underlying illness treated have the option of revoking hospice at any time and returning to "regular" Medicare.
When is Hospice Appropriate?
Non-cancer patients considering hospice should resist pressure to enroll no-questions-asked. Inquire what standards, if any, are being used to characterize the illness as terminal. Understand and perhaps challenge criteria the physician and/or an end-of-life care facility use to predict a six month life expectancy. What was a terminal illness by 1996 standards may be entirely treatable now. Indeed, individuals with what were once death-sentence cardiac, pulmonary and dementia diagnoses today may be effectively medically managed and go on to live very productive symptom-free lives for years.
*Reisfield GM and Wilson GR. Fast Facts and Concepts #143; Prognostication in Heart Failure. September, 2005. End-of-Life Physician Education Resource Center
** Childers JW, Arnold R, Curtis JR. Prognosis in End Stage COPD. Fast Facts and Concepts #141 August, 2005. End-of-Life Physician Education Resource Center
*** Anker, S., Clark, A., Coats, A., Niebauer, J., "Three year mortality in heart failure patients with very low left ventricular ejection fractions," International Journal of Cardiology, Volume 70, Issue 3, Pages 245-247
George Daleiden - I was a science major in college and later a career member of the Institute of Food Technologists. I worked in the processed food and ...
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