Determining Hospice Eligibility for Dementia

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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

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:

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:

  • History of aspiration pneumonia
  • Decubitus ulcers, possibly stage 3 or greater
  • Diabetes
  • 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: 653â€"659.

over 3 years, said...

Anyone who thinks that any doctor can predict life expectancy by examining an Alzheimer's patient every two months is mistaken.In Dr. Reisberg's scholarly article he points out that an Alzheimer's patients survival in affected by 15 variables including age, sex, scores on mental test, frequent falls, presence of infantile reflexes, fecal and urinary incontinence, to mention a few. kMy wife has stage 7b Alzheimer's and was recently dismissed form hospice because she can walk unassisted and feed herself, ignoring the fact that in the last two months on hospice she was sleeping 17 to 23 hours a day, losing weight and eating only 700 calories a day. If this pattern continues she will soon be so weak that she will be unable to walk and risks getting bed sores in spite of preventive measures. What can be done about this--probably nothing. I write this to point out that Medicare is setting criteria that only accomplish one thing and that is to save money. Gordon Scott, M.D.

almost 4 years, said...

This was a great article for clarifying how a dementia patient is accepted by Hospice.

over 4 years, said...

Services are going to be cut even more in the future I suspect. But just remember, it is all about money. You don't really think the "government" cares about you that they would say, " awe, let's give these poor people free services". It all started with a study of the elderly in their last months of life. They concluded that most ended up in a hospital and it cost a lot of money. They found that if they provided hospice services, it would save them millions of dollars to keep them at home instead of hospital. What happened is what I call double dipping. The families would put granny on services, then when something happened, they would revoke and go to the hospital. When she got out, they would go back on services, so Medicare was paying for both. Medicare didn't always regulate the hospices very well and so some would put anyone on that the Dr. Referred. Nursing homes got lazy, (some still are) and would try to put them on when they go too hard to handle because they would want "crisis care" where hospice staff stay at the bedside for a short time. Greedy hospices that wanted the business would do it and the pt not really qualify. If patients didn't have a good diagnosis, they would put them on for debility which was basically, we know she is going to die, but we don't know from what. Or adult failure to thrive because of weight loss. The only problem is they would stay on for years. Medicare finally became a aware of this and has been coming down hard on the hospices. The hospice you knew even 5 years ago is not the hospice today. Crisis care is very difficult to get if you really go by the criteria. The nurse has to be able to document every hour that they are trying to "fix" something. The big companies still do it, but I it's not as easy as it used to. When people are taken off services, the families can get really upset, they don't seem to care that their granny is no longer terminal, they want the services provided, supplies, meds. I wouldn't doubt in the future they will change the unlimited benefits for hospice. I personally think the 2nd time a family revokes to go to hospital, they have to wait 6mo. To a year until they can come back on service, then it may be as it was intended. While I'm at it, I will say a few other things about being a hospice nurse..... Hospice is not a care giving service, we are a support service. Which means we do not come in and take over the care, we do not stay 24/7. When you bring your loved one home you have committed to being the caregiver and all that it entails. We do NOT come out just to change the brief and clean the pt and bed. We do not come over to feed. We are NOT EMS and cannot get there in 15min. We CANNOT promise an exact time we will be there, every day Is different and if I am with another pt in crisis, I may not be able to call you until I'm finished to let you know. We do not tell you what to do, you are still in charge and make the decisions. We teach, recommend and suggest. However, if you choose not to follow our recommendations, please do not call 10 times in 30 minutes wanting us to fix it NOW. Also, most of us do not carry medications and we cannot get medications as quick as you want. We try to anticipate needs, but sometimes things happen. Also, some hospices are not sending out ER kits upon admissions now, which I think is wrong. Sorry I'm rambling, but hospice has changed so much from when I started 13 years ago.

over 4 years, said...

How old is this article? We've been told that "general debility" will very soon no longer be able to be used.

over 4 years, said...

For people with dementia living in a skilled care facility, hospice adds another set of eyes, another layer of care with the specific goals of ensuring comfort and dignity. My mother, who has end stage dementia, just qualified for hospice level of care. The hospice nurse and care givers add to the care she is already receiving in the facility where she lives. The other benefit is that when her time comes, she will be allowed to die a natural death and not be subjected to transfer to a hospital and medical procedures that could be distressing and painful. Additionally the hospice team provides emotional and educational support for family members now and for up to a year after her eventual death.

about 5 years, said...

What are the advantages of hospice versa general medical care?

about 7 years, said...

Recently tried to get hospice for mom. Turned down . She is in nursing home care with stage 5 or 6. She still eats okay but has congestive heart failure. Who knows how long, but better nursing home facility has made a world of difference.

about 7 years, said...

Very helpful and specific info on indicator of approaching end of life--weight loss, difficulty swallowing etc. A friend has been in state 7 condition for more than 2 years, but has no comorbidities. What is less clear is what hospice can do for such patients.

over 7 years, said...

Thank you for offering guidance regarding eligibility criteria. Medicine is not an exact science and it is expected that the patient will improve or make gains with hospice care. Transitioning off of Hospice care can be a quality indicator of care provided and should not be interpreted as a sign of inappropriate admission to Hospice Services.

about 8 years, said...

My mother is dying of dementia. She has been bedbound, incontinent, needing full care for one year. She has been on hospice for two six-month periods. She stabilizes and goes off. This is very difficul for me, the full-time, live-in daughter/caretaker because she is actually dying, but slowly. Their really needs to be in-home palliative care fore this type of patient - reduced services, but still with the same orientation as hospice. Why is this available only in hospitals? Why is it not covered by Medicare? Kay