Found out my mom is eligible for hospice. Do I tell her knowing she will think she's dying immediately? She wouldn't understand it's mainly for extra care.

My dad had home hospice by his choice. It worked well for us, great nurse and lots of good advice and help. For mom, in skilled nursing home, when she was recommended for hospice, it proved a disaster much to our surprise. It had the unexpected effect of causing the NH staff, who’d always been diligent and good with mom, to “wait for hospice” for many of her needs. She needs a bath “wait for hospice, they will do it” she needs her bedding changed “wait for hospice to do that” It was constant. Mom wasn’t actively dying, we canceled the hospice service, and her good NH staff care immediately resumed. It seemed they just took advantage of having one less resident to get to, but were fine with caring for her once they knew she was back on their roster. It was just amazing what a big difference we saw. Just my family’s experience…..as for telling your mom, I’d heavily bet there’s no way she’s not going to hear the term, so don’t believe if you don’t tell her she won’t hear it

There are lots of families that will place a family member on Hospice but instruct the Hospice Team to NOT say "Hospice"
But a good Hospice Team can easily explain the amount of care and attention she will get VS what she is getting now.
And a good Hospice Team will also explain that Hospice does NOT mean End of Life. (You can tell your mom my Husband was on Hospice for 3 YEARS!)
And you can also tell her that she can "try it out" and if after a month she does not feel comfortable with Hospice she can revoke Hospice and go back to her other medical team and/or she can switch to Palliative Care.

Hi Angie,

You are basically “changing the focus” to comfort care rather than curative care. And that takes a minute. As caregivers for our loved ones, it is sometimes difficult to make that transition in our response to their needs.

My DH aunt has been on hospice for years. I’ve never told her but I know she has heard the word. I asked the staff not to use the word but it sometimes happens.

“Hospice is a comprehensive, holistic program of care and support for terminally ill patients and their families. Hospice care changes the focus to comfort care (palliative care) for pain relief and symptom management instead of care to cure the patient's illness.
Patients with Medicare Part A can get hospice care benefits if they meet the following criteria
. They get care from a [Medicare-certified hospice
. Their attending physician (if they have one) and the hospice physician certifies them as
terminally ill, with a medical prognosis of 6 months or less to live if the illness runs its normal
course
. They sign an election statement to elect the hospice benefit and waive all rights to Medicare
payments for the terminal illness and related conditions
After certification, the patient may elect the hospice benefit for:
. Two 90-day periods followed by an unlimited number of subsequent 60-day periods.
. After the second, 90-day period, the recertification associated with a hospice patient's third
benefit period, and every subsequent recertification, must include documentation that a hospice physician or a hospice nurse practitioner had a face-to-face (FTF) encounter with the patient. The FTF encounter must document the clinical findings supporting a life expectancy of 6 months or less.
All hospice care and services offered to patients and their families must follow an individualized written plan of care (POC) that meets the patient's needs. The hospice interdisciplinary group establishes the POC together with the attending physician (if any), the patient or representative, and the primary caregiver.”

Some do not die within the first 90 day period or even the second 90 day period or even longer. Sometimes they actually do better off of the treatments than they were doing on them. But their prognosis is still one where they could die within the next six months if their illness runs it’s normal course.

Because so many people are afraid of the word “hospice”, even if they qualify, they don’t elect to receive hospice coverage. When I signed my DH aunt up, she was living at home and had become incontinent and I wanted her to have more baths than she was receiving from Home Health Services. My HH nurse explained that aunt could switch to hospice and get those extra visits. So I was willing to do that. I was like you, I didn’t want aunt to hear the word hospice.

This particular company tells me that they now offer palliative care to their Home Health clients who they know would be eligible for hospice but for whatever reason are not ready to go on hospice. Medicare does not have a Palliative Care program they compensate for. Just Home Health or Hospice. So they stay on the Home Health billing and give them more visits/care for a few weeks to see if they want to transition to hospice. This company only offers this to their existing Home Health clients.

My niece is about to put her husband on hospice. Her DIL is an RN with a Home Health. I asked if the DIL’s co. also had a hospice, she said no, they only offered palliative care. So, it appears to be an evolving aspect of end of life care through Medicare and the companies appear to be using “palliative care” in their marketing to gain/retain clients. If your mom is cognitive enough to notice the extra care, I might just tell her that she qualifies for comfort care from her insurance which is so nice.
In an ALF they usually like hospice to come in for the extra help. Aunts hospice went with her from home to ALF to SNF.

My MIL (in LTC in a facility) was put in hospice when she got original covid and the reason was so she could get better care since so many other residents were sick on her floor. She was in hospice for 4 weeks and had a full recovery.

When my daddy was diagnosed with ALZ I told the doctor not to use that word in front of him. My daddy knew he was forgetting things but I just told him we all forget things and he kind of accepted that. Also, I told anyone that visited him not to use that word ALZ in front of him. When he was put on hospice that also was a no-no word. I just said the home nurse is coming to visit. Also, by this time my POA was enacted and I had control of medical and financial decisions.

My MIL was in Hospice Care, but they referred to it as "Palliative Care' which I doubt she even understood.

Initially she thought they were trying to kill her, so that was rough. A lot of talk and reiterating over and over that she was just needing DAILY care began to help.

Honestly, I don't think she ever 'got it'. she was constantly ODing on her meds and falling down. I will add that her Hospice Co was rated the worst in the state, so that could have been a part of it.

Every time a hospice nurse came into my mother's room in Memory Care Assisted Living, they'd say "Hi JoAnn I'm Sue from Brighton Hospice." There is no way around it, and it won't be kept a secret no matter how hard you try to keep it one.

Tell mom the truth and that people live 2 years on hospice. It's not a death sentence, by any means, but extra care and a way to stop going to the ER for 4 hour stints. If she freaks out, then don't hire hospice and try again in a few months.

You don’t say how old your mother is or what her condition is so it’s difficult to answer. In your place I would tell her that you have more people to help her with anything she needs. If she doesn’t have dementia then you need to be honest about it. Explain that hospice does not mean she’s actively dying. They’re merely there to help. Don’t give her the option of “trying it out”. That’s no help to anyone.
I never told my mother she was in hospice care. Her dementia was so advanced that she’d never remember anyway. We had the same care team the entire five months she was in hospice care and they never told her they were from hospice. I didn’t ask for that - that’s just how they worked.
Whatever you do, approach this from a positive point; ie: “isn’t it great that we have so many people who care about you and are here to help you.” If you’re insecure in your speech and attitude she’ll sense that and may feel insecure herself.
No matter what any of us do, our LO’s will decline and eventually pass. Acceptance is a huge part of what we do as caregivers. I wish you the best.

My mother was on and off hospice for 2.5 years. She never really knew what it was (she had dementia). If there had been more discussion about it, I would have said that the additional people coming in were part of her care team. I might have mentioned that everyone wants her to feel the best she can, and that we were all helping her to do that. Her dementia left her with an attention span of a gnat, so there wasn't a lot of curiosity about anything. Just letting the days slip by and letting life go, which is what it is.

Are you absolutely certain that she will get "extra care" with hospice?? My mother was in a LTC Facility and when she started hospice she got much less care than before. It wasn't just that some medications were reduced, her level of care went way downhill. The hospice team came to see her twice a week and all they did was take her vitals and tell our family their vague assessments which were not helpful. They also provided zero guidance to us about what additional resources might be available.

I like the advice that you've been given to try hospice for awhile to see if it meets your expectations.

Good luck.