How do you know if your loved one is eligible to receive hospice services? How does a physician make a prognosis of six months or less for a patient? Let's take a look at the criteria that hospice and medical professionals utilize when determining whether a patient is appropriate for hospice services.
A life-limiting dementia such as Alzheimer's disease will progress over time. Patients can live with this dementia for several years; many are even able to remain at home, cared for by family members or professional caregivers. However, as the disease progresses, these patients become increasingly disoriented and unable to care for themselves. Too, they become more confused and may become combative or develop certain problematic behaviors, such as wandering. Ultimately, most patients will become completely dependent and require care outside the home. It is only when they reach the final stages that they qualify for hospice services.
But what, exactly, are the "final stages?" To answer this question and help determine patient eligibility for the Medicare/Medicaid hospice benefit, a set of guidelines was developed by a team of pioneers in Alzheimer's research -- specifically, Dr. Barry Reisberg & Associates, from New York University Medical Center's Aging and Dementia Research Center -- who devised methods of determining how to diagnose dementia progression. These guidelines became known as the Functional Assessment Staging or FAST scale.1
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The scale lists seven levels of function that help clinicians determine what "stage" the patient was in. Here's an example of how it measures stages of disease progression:
- Levels 1 - 5: Patient experiences increasing forgetfulness, inability to perform complex tasks, and needs assistance with dressing.
- Level 6: Patient needs help with bathing and toileting, and is unable to control bladder or bowels.
- Level 7: Patient experiences inability to form intelligent speech, inability to ambulate without assistance, and requires total care.
While the FAST scale is helpful in determining the staging of the disease, it fell short when clinicians tried to apply it to a real person needing a hospice referral. Sometimes the areas overlapped or the functional loss did not progress in an orderly fashion. And for physicians, determining the prognosis of six months or less became a real barrier to effective use of hospice services. By working with Medicare, hospices identified additional criteria to facilitate hospice referral, and thus helped physicians understand that dementia prognostication is not an exact science.
The additional criteria adhere to the FAST scale, but rely on the physician to make the ultimate determination of hospice referral. This means that if the physician determines the dementia patient has a prognosis of six months or less, to the best of his or her clinical ability, the patient is eligible for hospice care. In other words, while the disease progresses, a patient could be eligible even if he or she didn't precisely fit the Functional Assessment Staging. Measurements such as loss of weight, a decline in self-care (commonly known as the activities of daily living), or changes in behavior are tracked monthly to justify that the patient remains appropriate for hospice services. While physicians often worry they may be fraudulent in referring a patient too soon for hospice care, they should realize that hospices must follow Medicare guidelines for accepting and retaining that patient on service.
Let me paint a picture for you of a patient who would probably be ready for hospice care:
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Scenario 1: Generally, the patient would be elderly, have a history of dementia that had increased over the years to total dependency, and would have decreased food or fluid intake due to difficulty swallowing, resulting in weight loss. The patient would probably be living in a nursing home. The swallowing difficulty alone could be enough for the physician to make a prognosis of six months or less. The weight loss would be monitored (at least monthly) and would show a measurable decline. Ultimately, the patient would lose the ability to swallow altogether and progression to death would be more rapid. This would be a good time to start hospice services to help support the patient and family through the physiological changes taking place. It would also be a good time to educate the family regarding the benefits and burdens of artificial hydration and nutrition.
Scenario 2: Let's take the same patient from the first scenario and say that this person has also been dealing with feelings of depression and isolation for years. While eating and drinking less, the loss of weight is measurable. The physician feels the prognosis is six months or less. Once on hospice service, the patient appears to improve -- possibly from receiving more attention -- and eats more, gains weight and the clinical picture changes. After a trial period, the hospice may determine that the patient no longer qualifies for hospice services and would need to withdraw services. The physician would be notified of the findings and could then recertify the patient a little later.
In both cases the patients appear ready for hospice services. In both cases, the "stages" of functional decline seem appropriate, but certain situations, such as in the second scenario, call for a hospice patient to be monitored and observed to determine whether his or her health continues to decline or begins to improve.
It's important to note that the physician must consider other factors besides the dementia when making a diagnosis, which could cause problems using the FAST scale. A few of these factors include:
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- History of aspiration pneumonia
- Decubitus ulcers, possibly stage 3 or greater
- Cardiac disease
These factors are called "comorbidities," which are simultaneously existing conditions that make the diagnostic picture more complex. When there is an underlying medical condition -- in addition to the dementia -- that contributes to the decline, the prognosis could be shortened. Hospice would then accept the diagnosis of "debility unspecified"; that is, no single specific condition -- dementia, diabetes, end-stage cardiac disease -- is causing the terminal illness. The physician would then use the diagnosis of debility unspecified, rather than end-stage dementia, for eligibility for hospice services.
Determining eligibility for dementia patients can be complex for physicians and clinicians -- and Medicare-established guidelines, along with the FAST scale, can, at times, fall short. But with Medicare, physicians and hospice experts all working together, more patients than ever are now able to qualify for hospice care. If you are unsure whether your loved one is eligible for comfort care, speak to your physician or contact your local hospice for help and guidance.
1 Reisberg, B., "Functional Assessment Staging (FAST)." Psychopharmacology Bulletin, 1988, 24: 653Ã¢â‚¬"659.