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Extra care. I’m afraid she’ll decline even further knowing she’s on hospice. I’ve considered not mentioning the word hospice but I’m afraid she’ll hear it from someone else in her assisted living then be upset with me for not telling her.
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.
Older posts have made it clear that Hospice is available when death is expected within 6 months, but that it can be renewed and often is. Perhaps if you make this clear (vaguely), it won’t sound so much like a death sentence in a couple of weeks.
I've seen a lot of posters on this forum suggest that the patient not be told they are on hospice. This is confusing to me. When my MIL was being evaluated for hospice, I'm quite sure the social worker talked to her about it to make sure it was her choice and she wasn't being influenced to make that choice. I think she may even have had to sign something to that effect. She was being treated for cancer which was stopped, of course, when she went on hospice. Maybe that is the difference?
If the person has cognitive issues, as many do, they aren’t able to make health care decisions for themselves. The MPOA decides, along with the doctors, when to call in hospice. The MPOA signs the papers.
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
I wanted to clarify by saying , you could tell Mom extra help is coming from a hospice company without saying she’s “ on hospice “, even though she is .
Then you could say that hospice also offer palliative care .
It’s a therapeutic fib. Let her make the conclusion that she’s on palliative care even though she’s on hospice .
Then if she hears the word hospice maybe she won’t freak .
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.
I upvoted your answer because I think it's really important for people to know that they can fire hospice at any time. Hospice may or may not meet your expectations. Also something that I don't like is that nursing homes and assisted living facilities sometimes partner with certain hospices and they make it seem like you have to use that particular hospice. Not true - you can shop around. There is also a book called Surviving Hospice by Maryclaire Torinus that could be of interest. She was a hospice chaplain and has some good things and some not so good things to say about hospice. I think she also has a website. I haven't checked it out myself though.
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.
If she has Dementia, I see no reason to tell her. I see no reason to tell her at all. Just tell the admitting Nurse you do not want the word used. Then reiterate that with the aide and Nurse that visits that the word Hospice is not to be said. Even if I knew I was dying, don't think the word Hospice needs to used like Lea said it was with her Mom. Tell Mom the people are there helping you out.
Angie, I don't think there is a right or wrong here, i think you know your mom, most . So listen to your gut
I don't think it's wrong to withhold or stretch the truth
I know someone that didn't tell there dad, then he kept reminding her of his GP appointment and she told him, you don't need to see her anymore, and he figured it all out. She wonders if she should of told him.
So I'd say it depends where your mom is cognitively.
If her cognition is good, she will probably figure it out.
Best of luck. We are always here if you need an ear.
I never told my mother she was under hospice care. It started in December and she passed away the end of April. I don't think she knew truly what it meant but if she did she was very accepting. It was a wonderful hospice company.
I was told as the suffering was increasing that I should tell her it was alright to let go. She didn't really want to hear that. She had been a Christian Scientist for many many decades and although she received medication the last decade of her life she still felt those beliefs to her core.
I grappled with having told her about the end nearing. I thought I was doing the right thing and didn't fully realize her beliefs would not allow this. Personally I detested that religion as I was raised with it and felt that I suffered many times with not receiving medication when sick. However I never meant to punish her for this. I actually attended a grief group to help with the emotions I was having.
Only you know the personality of your loved one. I am just relating my personal experience. I remain glad that I never emphasized hospice to my mother. She was on so much pain medication for her ailments that I felt it was best for her to continue with her thoughts and I quickly stopped talking about end of life.
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.
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.
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.
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.
Angiebeth29, I didn't tell either of my parents when they entered hospice. I saw no point in mentioning this to them. Even if either were moved to a different facility, I would have kept quiet.
With hospice one can be in hospice for over a year. Look at former President Jimmy Carter who will be 100 in October. You can keep that in the back of your mind if for some reason your Mom gets wind that she is in hospice.
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.
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.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
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APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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.
Maybe tell her extra help is coming from a hospice company . Some of them offer palliative care as well .
Then you could say that hospice also offer palliative care .
It’s a therapeutic fib. Let her make the conclusion that she’s on palliative care even though she’s on hospice .
Then if she hears the word hospice maybe she won’t freak .
I like the advice that you've been given to try hospice for awhile to see if it meets your expectations.
Good luck.
I don't think it's wrong to withhold or stretch the truth
I know someone that didn't tell there dad, then he kept reminding her of his GP appointment and she told him, you don't need to see her anymore, and he figured it all out. She wonders if she should of told him.
So I'd say it depends where your mom is cognitively.
If her cognition is good, she will probably figure it out.
Best of luck. We are always here if you need an ear.
So sorry about your mom 🙏
I was told as the suffering was increasing that I should tell her it was alright to let go. She didn't really want to hear that. She had been a Christian Scientist for many many decades and although she received medication the last decade of her life she still felt those beliefs to her core.
I grappled with having told her about the end nearing. I thought I was doing the right thing and didn't fully realize her beliefs would not allow this. Personally I detested that religion as I was raised with it and felt that I suffered many times with not receiving medication when sick. However I never meant to punish her for this. I actually attended a grief group to help with the emotions I was having.
Only you know the personality of your loved one. I am just relating my personal experience. I remain glad that I never emphasized hospice to my mother. She was on so much pain medication for her ailments that I felt it was best for her to continue with her thoughts and I quickly stopped talking about end of life.
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.
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.
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.
With hospice one can be in hospice for over a year. Look at former President Jimmy Carter who will be 100 in October. You can keep that in the back of your mind if for some reason your Mom gets wind that she is in 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.