QUESTION: Please speak to Hospice Approval Denied due to only major diagnosis code being Alzheimer's and not considered to be in final stage. But person not eating, ~70 lbs now, sleeping or resting most of time, too weak to get out of bed even to wheelchair now, doesn't seem like there's any way to live more than six more months. Do many people die this slow death without ever being approved for hospice?

What I have learned about patient’s with dementia (no matter by what clinical name the dementia is called) they do not play by the rules for signs of approaching death. It is very hard to determine if the patient has six months or less to live even if they are 70 pounds.

Why? Because with dementia the person can be sleeping a lot and withdrawing from the world about them---for years. The key signs of approaching death from disease, on a continuum from months before death to actual death, are a gradual increase in sleeping, gradual withdrawal from the world around them and a progression of decreased eating.

Eating becomes the key to admitting a person who has only dementia (and no other disease progression) onto hospice. When a person with dementia reaches the place where swallowing is impaired to the point a feeding tube is being considered---that is the time hospice can be considered. If artificial feeding is ruled out then bring in hospice. If a person doesn’t have nutrition, they will die---hence the need for hospice.

I know that there are all sorts of protocols for when to admit a person to hospice, of when a person is appropriate for the hospice benefit. Personally, I think it is very simple. If a person has a life threatening illness, whether they are receiving treatment or not, and in spite of all the medicines and treatments their condition continues to deteriorate, they are sleeping more, not interested in what is going on about them and eating less, they have probably entered the dying process and have a prognosis of months. This is when they are appropriate for hospice. Unfortunately, people (patients, families, physicians) wait until the actual labor of dying begins (one to three weeks before death) before calling hospice,

For the last few years hospice has been admitting dementia patients and because of their slow decline have been able to document their appropriateness. However when the medical records show patients with dementia consistently on the programs for a couple of years, red flags begin to wave. This is where hospices are now. Many hospices are reluctant to admit people with dementia because of all I have described above.

This brings us back to if you don’t eat, you don’t live. Consistent documentation of inability to swallow, choking, and aspiration with the choice of no artificial feeding seems to me to be an appropriate hospice referral. All this said it is up to the individual hospice. If one turns you down, try another.

Something more about Alzheimer's, Dementia Patients and Hospice...

As I've said before, dementia doesn't play by the rules. The usual signs of approaching death are clearly spelled out in Gone From My Sight.