Hospice and rookie mistakes

[Anonymous]

We had a very good experience with hospice in Missouri with my dad who had cancer. They visited once a week for 3 months, anlso a chaplain annd social workers came occasionally, the nurse brought supplies until the last week when they came daily. Then the pain began 36 hours before he died. His kids all made it there and after our goodbyes they did give him extra morphine ad he died. Not sure how it would have gone if he’d had pain for longer. He was ready at that point so we felt ok about it.

I’m sorry to hear of these horrible situations. Interviewing hospice groups is super if you’re in an area with choices.


Also they don’t provide much care and that is not spoken about enough. All medications for whatever is causing their terminal prognosis are dropped and only pain relief is offered.

[Anonymous]

I had the opposite experience of many people here- we found that some of the nurses were way too interventionist, forcing nutrition into my FIL when he was refusing food and was clearly ready to go.

I can’t stand these people that want to keep people alive whatever the cost and however low their quality of life. When my time comes I pray for a quick and merciful death.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It sucks.

They don’t tell you hospice does very little and you’ll still have to provide 24-7 care.

A nurse decided to give my dad a lethal dose of morphine without telling us and left him alone on a sofa at a memory care unit in Olney. He had stopped eating so they forced us to put him on hospice and also took away all his meds so he was freezing from lack of thyroid medications. Really messed up.

I think hospice is terrible.

I have a friend in elder care; she says a person is dead within 3 days of stopping eating.
The nurse’s act was actually one of compassion as much as it is possible in rehab/hospice.
I am sorry about your dad but he would have lasted maybe one more day if not that.

Np

Your friend is wrong. My father didn't eat for weeks, just had a basic IV, after his stroke. Eventually he regained his ability to eat.

Very different situations. With hydration a person can live for months. Hospice typically does not use iv hydration after a person can no longer swallow. It is part of the dying process for a person who is dying. A person recovering from a stoke, illness, surgery is a different situation.

Not true. For example, many patients with ALS lose the ability to swallow and go on a feeding tube when they have significant quality of life left. When their breathing finally starts to fail and they go on hospice, hospice doesn’t prevent them from continuing to “eat” through their feeding tube, to the extent that their body will still digest food. That would be incredibly cruel.

[Anonymous]

Anonymous wrote:I had the opposite experience of many people here- we found that some of the nurses were way too interventionist, forcing nutrition into my FIL when he was refusing food and was clearly ready to go.

I can’t stand these people that want to keep people alive whatever the cost and however low their quality of life. When my time comes I pray for a quick and merciful death.

Completely agree with this! Quality of life needs to be a bigger emphasis than safety and longevity.

[Anonymous]

Anonymous wrote:I'm sorry OP, as so many others have said - there really aren't "good" solutions at this stage. The reality is what it is and that's hard, no matter the path.

FWIW, I found that the "best" choice was the one that ensured safety. That often wasn't the preferred choice of my mother (or father), but it was a standard that made sense to me and that has helped me feel at peace w/ decisions I had to make at key stages. So home wasn't an option unless we could make it safe (and it wasn't always), rehab sometimes was necessary, a nursing home was necessary, hospice care with live-in staff was necessary, etc... - all at different points (and with different people and different health challenges).

Safety first. Then you make the best of whatever rotten hand your loved one has been dealt.

Hang in there.

Hard disagree. If safety is not your parent's priority they may be purposefully making choices that make them less safe and thus hasten death. That is their right to choose.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It sucks.

They don’t tell you hospice does very little and you’ll still have to provide 24-7 care.

A nurse decided to give my dad a lethal dose of morphine without telling us and left him alone on a sofa at a memory care unit in Olney. He had stopped eating so they forced us to put him on hospice and also took away all his meds so he was freezing from lack of thyroid medications. Really messed up.

I think hospice is terrible.

I have a friend in elder care; she says a person is dead within 3 days of stopping eating.
The nurse’s act was actually one of compassion as much as it is possible in rehab/hospice.
I am sorry about your dad but he would have lasted maybe one more day if not that.

Np

Your friend is wrong. My father didn't eat for weeks, just had a basic IV, after his stroke. Eventually he regained his ability to eat.

Very different situations. With hydration a person can live for months. Hospice typically does not use iv hydration after a person can no longer swallow. It is part of the dying process for a person who is dying. A person recovering from a stoke, illness, surgery is a different situation.

Not true. For example, many patients with ALS lose the ability to swallow and go on a feeding tube when they have significant quality of life left. When their breathing finally starts to fail and they go on hospice, hospice doesn’t prevent them from continuing to “eat” through their feeding tube, to the extent that their body will still digest food. That would be incredibly cruel.

Unless the patient has indicated that they no longer want to "eat"

[Anonymous]

Anonymous wrote:

Anonymous wrote:I had the opposite experience of many people here- we found that some of the nurses were way too interventionist, forcing nutrition into my FIL when he was refusing food and was clearly ready to go.

I can’t stand these people that want to keep people alive whatever the cost and however low their quality of life. When my time comes I pray for a quick and merciful death.

Completely agree with this! Quality of life needs to be a bigger emphasis than safety and longevity.

THIS. Waiting for my dad to pass was agonizing for me (he was in an in-house hospice facility and we had great care there, but perhaps because my sister and I were in our 20s, they were more compassionate towards us), and while I don't think he was having any pain, it truly was awful, just feeling like I was waiting. This experience, and the things I've witnessed from being an ICU nurse, I've decided if I am ever a burden to my loved ones, I want out, and I want out quick. If I'm completely lucid but someone has to wipe my butt, I'm out.

[Anonymous]

Folks - hospice is big business. Even my Dad's doctor says that. Capital Caring is one of the worst. Horrible horrible horrible. The only "good" part of it was the Adler Center in Aldie. Dr. Goodblatt and his team there provide respectful end of life care. The rest was a s&%t show.

[Anonymous]

My mother was in hospice in 2019. They provided a bed and some supplies but we still have to order more. Hospice visits once a week for one hour. We thought there would be so much more help than there was. My amazing father became her nurse, changing her diapers, wiping her mouth and caring for her. She lived on hospice for about eight weeks.
One of the only helpful things I did was google and found a document about the stages of death from a hospice website. It listed a timeline of what you can see and it was really helpful, because no doctor would tell us and we felt like we had no idea if she was going to survive after her period of hospice, or pass away. Once I found that document, I understood that not eating, having trouble regulating body temperature, and sleeping all the time Was a stage of death

Given the cost of elder care, I expect to see a similar process play out with my dad and my in-laws. There really is no help for anyone and it’s on families to do end of life care if you are not wealthy. I’m not quite sure how we will manage it. Maybe I will have to leave my job.

[Anonymous]

How come people are so surprised about the level of care that hospice provides/doesn't provide? It seems like a lot more communication and education is required.

[Anonymous]

My SIL had this feedback for me..,

When you know your mom is dying (and she was) don’t put her in rehab. They will force inappropriate PT/OT/drugs. Don’t bring her home you are not equipped to care for a dying person at home.

Go to a hospice center.

We did thankfully and Casey house was amazing,

Make sure you are on all accounts even if you are power of attorney. Power of attorney end the moment they die. If you need their account to pay bills/funeral/etc you need to be on their account.

Beneficiary overrides the will.

Make sure all beneficiaries are the estate and not a person.

[Anonymous]

Anonymous wrote:My mother was in hospice in 2019. They provided a bed and some supplies but we still have to order more. Hospice visits once a week for one hour. We thought there would be so much more help than there was. My amazing father became her nurse, changing her diapers, wiping her mouth and caring for her. She lived on hospice for about eight weeks.
One of the only helpful things I did was google and found a document about the stages of death from a hospice website. It listed a timeline of what you can see and it was really helpful, because no doctor would tell us and we felt like we had no idea if she was going to survive after her period of hospice, or pass away. Once I found that document, I understood that not eating, having trouble regulating body temperature, and sleeping all the time Was a stage of death

Given the cost of elder care, I expect to see a similar process play out with my dad and my in-laws. There really is no help for anyone and it’s on families to do end of life care if you are not wealthy. I’m not quite sure how we will manage it. Maybe I will have to leave my job.

Medicare pays for in patient hospice care

[Anonymous]

My mom was on hospice for 4 months before she passed. I loved the support they provided, showering her twice a week, a companion to visit for an hour a week, weekly nurse checks. All the work still fell to me or aides we hired, but I had been doing all the work for years so it was nice to have some help. Plus I liked having someone to talk things through with so regularly. It made a big difference for my sanity. We used a non profit for hospice and they were really great.

It sounds like there are a lot of expectations that hospice is nursing home care. There is a subset that is, but most of it is just a bit more support for palliative care at home.

[Anonymous]

My sister has worked in hospice on the medical side for years and her advice to people who ask is to not to dismiss the idea of making use of the chaplain, even if you or the patient aren't religious. By law all hospice agencies have to offer you a chaplain visit but many people refuse the offer because they assume it will be proselytizing. But in my sister's experience, the people who make use of the chaplains almost always report that interaction being their most positive experience. They find the chaplains bring real comfort regardless of their faith tradition. I've heard the same from several friends who have been through the hospice process with their parents.

[Anonymous]

Anonymous wrote:My SIL had this feedback for me..,

When you know your mom is dying (and she was) don’t put her in rehab. They will force inappropriate PT/OT/drugs. Don’t bring her home you are not equipped to care for a dying person at home.

Go to a hospice center.

We did thankfully and Casey house was amazing,

Make sure you are on all accounts even if you are power of attorney. Power of attorney end the moment they die. If you need their account to pay bills/funeral/etc you need to be on their account.

Beneficiary overrides the will.

Make sure all beneficiaries are the estate and not a person.

+1 to all of this and my Dad died at Casey House last month. We were mad at first that my stepmother didn’t let him go home - that’s what he wanted but she owns the house and had medical POA - but the facility was much better. Huge props to everyone there for the hard work they do.