What were the benefits of going on hospice?

[Anonymous]

My experience with hospice was not what we expected. There are few “hospice facilities” and instead they come to you. There is huge pressure to do care at home which could not work for us for several reasons so we had my mother with end stage cancer in a facility. Hospice showed up here and there to assist with bathing. There was an unseen Dr who prescribed morphine. On her last night I had hoped hospice would come be with us as it was clear death was imminent. We just wanted a short break and for someone to sit with mom so she wouldn’t die alone. Nope — was told they don’t do that. My sibling and I slept on the floor all night to be with her. Hospice couldn’t give a shit and only showed up after she died. Very little emotional support for our family.

[Anonymous]

We had hospice for both of my parents and they were a godsend. We were in a different state. There are a lot of agencies to choose from and I did some research before reaching out. The nurses and techs that treated my parents were compassionate and open regarding care options-thought outside the box for some medication combinations to help bring more comfort. They also were a great support to my siblings and me-particularly when close to end of life. Another big thing for us was that when each parent passed they were able to pronounce time of death as opposed to needing to call the rescue to our house to officially document death.

[Anonymous]

Anonymous wrote:My experience with hospice was not what we expected. There are few “hospice facilities” and instead they come to you. There is huge pressure to do care at home which could not work for us for several reasons so we had my mother with end stage cancer in a facility. Hospice showed up here and there to assist with bathing. There was an unseen Dr who prescribed morphine. On her last night I had hoped hospice would come be with us as it was clear death was imminent. We just wanted a short break and for someone to sit with mom so she wouldn’t die alone. Nope — was told they don’t do that. My sibling and I slept on the floor all night to be with her. Hospice couldn’t give a shit and only showed up after she died. Very little emotional support for our family.

That’s not what hospice does. You needed to hire a caretaker.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:If I were in lots of pain on oxygen could not walk and had trouble breathing (assuming. No hope of recovery). I would want pain relief. It does not sound like that medication is providing much quality of life! Hospice kept my Dad comfortable till the end. We were grateful for that

OP here, really appreciate all the feedback! There is definitely no hope of recovery here. The medication is ofev and it's for pulmonary fibrosis. I think if he went off it, it would make breathing even more difficult than it already is. I'm wondering logistically why hospice doctors would be able to provide better pain relief than regular doctors though. Are hospice doctors just more willing to provide morphine because there is less of a liability issue?

They don't remove all medications. Talk to hospice before you rule it out. Hospice care really varies by the provider and team you get. We never used morphine. It was prescribed but used.

As you observe, what “they” do varies from place to place, case to case and provider to provider.

We were told they’d stop antibiotics because those were “treatment,” even though an active infection increases the patient’s suffering.

There are good hospice groups and good hospice facilities, and the underlying idea of death with dignity in loving surroundings without heroic measures is a good one.

But particularly since hospice became a separate insurance/medicare benefit, it has been oversold and do it is not unusual to find very poor care, disinterested providers and, in the worst cases, know it alls who think morphine is the cure for any and everything.

There is a fine line between natural death with dignity and adequate pain relief on one hand, and being hurried along by an “angel of mercy” motivated by arrogance, profit maximization or both.

[Anonymous]

Anonymous wrote:NOT MUCH and it means you can't go see your old doctors most of the time!

Stay away from hospice until you are within weeks of dying.

My dad got two nurses visits a week and a twice weekly CNA bed bath. It was NOT WORTH losing his doctors.

+1

[Anonymous]

Anonymous wrote:I have an ailing father who several doctors have recommended hospice for but my mother doesn't want to because he will likely become ineligible for an expensive medication that improves his quality of life. He is on Medicare.

Currently we have a caregiver coming four hours during the day plus all night. My mother does the caregiving otherwise. He is in lots of pain, on oxygen, trouble breathing, cannot walk, etc.

I'm wondering if anyone could share concretely what kind of benefits they were afforded by switching to hospice. Was it a big help? An improvement in quality of life? Better pain management? If it matters, we are in Montgomery County, Md.
Thanks!

We got end-of-life navigation and lots of opioids.

[Anonymous]

OP here, thanks everyone! My father is not in a place to make his own decisions. He was clear he didn't want his life artificially cut short but it's hard to say how much longer he has with no hospice. I don't know how one might tell he if he is super close to death. He is on oxygen and cannot walk. Oxygen levels fluctuate but other viral signs look okay.

There will probably be one major crisis, but even before that body will simply start shutting down. Swollen limbs, eating less and less - a week before he passed, my dad mention he had trouble swallowing.

[Anonymous]

OP for us it was the difference between treatment with hopes of getting better to accepting that he was dying. He was almost completely unconscious/ asleep and didn’t want to eat or drink when he was awake. Hospice meant no more feeding tubes, just water from a sponge around the lips, and morphine to help the pain. They also spoke to us about what to expect as far as dying and the practical aspects of the funeral home coming to the home/hospital to get his body.
For the most part I found all them compassionate and practical. 💯 I would like my kids to call in hospice when I am close.
Have a check list and ask the hospice person- thangs like- do you stop feeding? Oxygen? What type of pain relief? When? Etc.

[Anonymous]

Anonymous wrote:

Anonymous wrote:NOT MUCH and it means you can't go see your old doctors most of the time!

Stay away from hospice until you are within weeks of dying.

My dad got two nurses visits a week and a twice weekly CNA bed bath. It was NOT WORTH losing his doctors.

+1

+2--unless you want extreme pain meds say no to hospice

[Anonymous]

We are in a poor county in Maryland. Mom has been in in home hospice care for about 18 months.

The biggest benefit would be access to stronger pain meds. They really push this stuff.

If your PCP is unable to prescribe pain meds that you loved one needs that would be the main benefit.

They really push you to take loved ones off of other prescription meds.

Can you talk to your existing docs to see if they can prescribe stronger meds?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NOT MUCH and it means you can't go see your old doctors most of the time!

Stay away from hospice until you are within weeks of dying.

My dad got two nurses visits a week and a twice weekly CNA bed bath. It was NOT WORTH losing his doctors.

+1

+2--unless you want extreme pain meds say no to hospice

And the alternative is? Dying w pain? In a hospital? Your comment makes no sense.