When is it time for hospice?

The following is an email from Moira Keller of the Sixty Plus Program at Piedmont Hospital. I had written her to ask how to enable the most consistent, appropriate care from five different caregivers for my mother. As of two weeks ago the caregivers have needed to change gears and are now needing to do all personal care including feeding and toileting. I thought her answer might be helpful for those who are wondering about when to do hospice. Peace, Martha Sterne

Hi Martha,

My immediate thought is maybe now is the time to see if your mom is hospice appropriate. If she is, then the hospice nurse could suggest a care plan such as you describe. She could give you more specific guidance in this area.

Here are the basic hospice criteria for late stage dementia:
1. Inability to walk.

2. Unable to dress without assistance.

3. Unable to bathe independently.

4. Incontinence of bowel and bladder.

5. Unable to speak or communicate meaningfully.

6. Infection within the past 12 months, could be urinary tract infection, skin breakdown, pneumonia or other respiratory infections, etc.

7. Weight loss, even if the person is consistently eating.

8. Trouble swallowing food. Patient will often “pocket” food in their cheeks and resist swallowing.

If your mom is exhibiting most of these symptoms (she doesn’t have to be showing signs of all of them) then it would be a good idea to ask her doctor for a hospice referral. Medicare will pay for a hospice nurse to evaluate her. Even if the nurse does not find her hospice eligible at this point, the nurse may give you valuable information about her current functional status and what to expect; the nurse may also suggest that in another few months or so your mom may be ready for hospice. At the very least, I think the hospice nurse could suggest a schedule for changing, turning, etc., even if the decision is that your mom is not yet ready for hospice care.

One thing to keep in mind: often, when older adults are in a state of steady decline, they will qualify for hospice care under the “failure to thrive” category. So even if your mom doesn’t have all or even most of the late stage dementia symptoms, she may have most of the FTT symptoms, and thus qualify.

Medicare will pay for the hospice team to come for short, episodic visits. Mostly it would be the nurse coming, but the nurse can bring in the chaplain, social worker, physical therapist, etc., other team members who may be helpful, as needed. I’m sure you know all of this!

So I think this should be your next step, asking the doc for the hospice referral, and go from there. If for some reason there are good reasons not to pursue hospice, then I would ask the doc if he can order an evaluation from a home health nurse, for one visit, and then you could pick her brain about scheduling. If the doc cannot do this (he/she may say that there are no skilled nursing needs that your mom has, thus Medicare would not cover such a visit) then you may want to hire a nurse privately to come to the home for one visit to assess the situation and give you scheduling advice.

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