Dear Barbara,
Hospice was denied because my loved one’s only major diagnosis is Alzheimer’s, and they are not considered to be in the final stage. But they are barely eating, weigh about 70 pounds, sleep or rest most of the time, and are now too weak to get out of bed, even to sit in a wheelchair. It doesn’t seem possible that they could live another six months. Do many people with dementia experience this slow decline without ever being approved for hospice?
What I have learned about people with dementia, no matter what clinical name the dementia is given, is that they do not play by the rules when it comes to signs of approaching death. It can be very difficult to determine whether a person has six months or less to live, even when they have lost a significant amount of weight.
Why? Because with dementia, a person can sleep a lot and withdraw from the world around them for a very long time. With many diseases, the key signs of approaching death—on a continuum from months before death—are a gradual increase in sleep, withdrawing from the world around them, and decreased eating.
Eating and swallowing changes become especially important when looking at the progression of dementia. Significant weight loss, eating less, difficulty swallowing, and choking and aspiration are all signs that the body is declining. These changes, along with the person’s overall condition, can help determine the time to consider hospice.
I know there are all sorts of guidelines for determining when a person is appropriate for the hospice benefit. Personally, I look at the whole picture. If a person has a life-limiting illness and their condition, in spite of the care or treatments they are receiving, continues to deteriorate—they are sleeping more, less interested in what is going on around them, eating less, and becoming less able to function—then it is time to ask whether hospice is appropriate.
Unfortunately, too often patients, families, and physicians wait until the actual labor of dying begins, often one to three weeks before death, before calling hospice.
Dementia makes hospice admission difficult because people with dementia don’t follow the usual patterns. They can be sleeping more, eating less, losing weight, getting weaker and more withdrawn, and then stay that way for months or years. Hospice has to determine that a person is likely to have six months or less to live. This is why a person can look very frail yet hospice may still say, “Not yet.”
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... on dementia and hospice care
Caring for someone with dementia at the end of life is different. My booklet, How Do I Know You? Dementia at the End of Life, explains what to look for as dementia progresses and helps families understand the changes that can signal that life is nearing its end.
Learn more about How Do I Know You?
3 comments
Kim
Barbara,
Thank you for this answer to how physical decline symptoms with a dementia diagnosis differs from the “usual” decline symptoms in people in terms of a time frame.
My husband has vascular dementia, and after reading your answer, even though I’m seeing his strength and weight concerningly decrease, I realize now that it isn’t as important an indicator of time frame as it was for my father who passed from cancer after 5 weeks on hospice.
This was helpful information to me as his primary caregiver during the last 7 years.
Barbara,
Thank you for this answer to how physical decline symptoms with a dementia diagnosis differs from the “usual” decline symptoms in people in terms of a time frame.
My husband has vascular dementia, and after reading your answer, even though I’m seeing his strength and weight concerningly decrease, I realize now that it isn’t as important an indicator of time frame as it was for my father who passed from cancer after 5 weeks on hospice.
This was helpful information to me as his primary caregiver during the last 7 years.
Sally Bergman
What you’ve said is so true. It can be very difficult to determine when that 6-month period might be commencing for a dementia patient. Unfortunately, there were, and likely still are, some hospices that were prematurely admitting dementia patients into hospice, so Medicare regulators were penalizing them by clawing back payments they had made to the hospice agency for those patients. The result is that many hospice agencies have now erred on the side of extreme caution, which sadly can mean a patient should be in hospice, but is not. I state this from long-time experience as a board member for a non-profit hospice.
That all said, never feel you do not have the right to be an advocate for your loved one, for it is you who for likely many years have been witness to their decline. It’s OK to be a squeaky wheel! The order always comes from a treating physician, so it’s that person that needs to hear the details of you loved ones decline.
As always, Barbara provides so much wonderful information.
What you’ve said is so true. It can be very difficult to determine when that 6-month period might be commencing for a dementia patient. Unfortunately, there were, and likely still are, some hospices that were prematurely admitting dementia patients into hospice, so Medicare regulators were penalizing them by clawing back payments they had made to the hospice agency for those patients. The result is that many hospice agencies have now erred on the side of extreme caution, which sadly can mean a patient should be in hospice, but is not. I state this from long-time experience as a board member for a non-profit hospice.
That all said, never feel you do not have the right to be an advocate for your loved one, for it is you who for likely many years have been witness to their decline. It’s OK to be a squeaky wheel! The order always comes from a treating physician, so it’s that person that needs to hear the details of you loved ones decline.
As always, Barbara provides so much wonderful information.
Julia
I experienced the same. My mom was rejected for hospice services because she didn’t have a life threatening diagnosis, didn’t have 6 months to live and hadn’t lost enough weight said her doctor in the nursing facility. I switched doctors, he did approve her and she died 5 weeks later
I experienced the same. My mom was rejected for hospice services because she didn’t have a life threatening diagnosis, didn’t have 6 months to live and hadn’t lost enough weight said her doctor in the nursing facility. I switched doctors, he did approve her and she died 5 weeks later