I got a letter about a hospice agency ending services for a woman whose only diagnosis was dementia . As sad as I am to hear those stories (and I get many) I am not surprised. These families have had the comprehensive services of hospice for months, even a year or so and then they are withdrawn because the person is no longer eligible.
These discharges are happening because dementia doesn’t play by the rules for end of life. It isn’t until eating becomes a problem that the dying process really begins.
Dementia seems to be in a category of its own. It doesn’t fit into Home Health services that focus on getting people better. It doesn’t really fit Palliative Care, although maybe it could.
There is a huge void in our medical system that so many families living with dementia fall into. These families have a loved one too sick and require too much care without hope of getting better. Yet because they have not yet entered the dying process they do not qualify for most health care services, let alone hospice care…
Hospice, to its credit, has stepped in to fill this void, but is tied by the six month prognosis clause in the hospice medicare benefit. If they can’t report continued decline toward approaching death after 6 months of care they must discharge a person from services.
If you find yourself in the situation where your special person is being discharged from hospice due to not declining fast enough, have the hospice social worker advise and help you get into community services that are available in the area. Check national resources like AARP. Services that can help support you in the loving care you are giving.
Ask about where you can get medical equipment, assistance in physical caregiving, even volunteer support. Also check end of life doulas in your area. Talk to them, see what they can offer and how much they charge. What about support from a church? Also some places now have dementia doulas. Do an internet search to see if any are in your area.
None of the above will be as comprehensive as the services hospice has provided, but use the hospice social worker while you have her/him.
Something More about… Hospice Services Pulled for Dementia Patient
As for a resource that will support you and your family, I suggest getting my DVD/Vimeo, NEW RULES, For End of Life Care. Have everyone in the family watch with you as it will answer many questions about what to expect when the dying process begins. It covers food, hydration, pain, narcotics, sleep, withdrawal, grief… In 30 minutes tense shoulders soften, heads nod with understanding and tender conversations will happen.
7 comments
Thank you so much for your supportive and continued articles regarding end of life. You are one of a very few who speak on this subject and families are hit unprepared when a loved one faces the end. Sadly, even hospitals do a poor job about informing the family regarding what is really happening. When my father entered the final stage of dementia and was discharged from the hospital, they never explained this to us. I never even knew dementia had stages! We brought our father home thinking he might still get better until a nurse mentioned he was dying and suggested Hospice?!?!?! Something similar later happened to my aunt and her immediate family was left dumbfounded until we shared our Hospice knowledge recently learned. I wish the various care providers understood better that families are unaware of medical terms and stages, unless THEY tell us and we also need to know. Wondering how many families get blindsighted at the end… At lease they find your books and they become the only anchor we have towards understanding…
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BK Books replied:
Oh Barbara, I’m so sorry you were not given adequate information and discharge planning. Our healthcare system is failing us in so many areas, dementia care being one of the areas. I’m glad you were able to take what you learned from your experience and “pay it forward” for your aunt. My blessings to you and your family. Barbara
Thank you for writing about such a frustrating issue, Barbara. The other option families might have is to file an appeal of the discharge from the hospice agency. When an appeal is filed, the hospice agency must continue care until the decision is received. The agency is required to tell the family how they can file an appeal. So glad you’re writing about this situation, and so grateful for your leadership in end of life care!
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