My hospice recommendation is Goodwin House. They are non profit. At the very least, you can get information. They can do an assessment very quickly if his condition changes. They will not pressure you. We did an assessment and then waited another month until we were ready.

Anonymous wrote: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. Many many smaller diseases but the only thing that looks like it imminently stands to kill him is the pulmonary fibrosis, which although quite bad already, can sometimes be slow progressing. To my very inexperienced eyes he seems close to death but I know some people can live a long time immobile and on oxygen so I don't really know.

Is keeping him on the pulmonary fibrosis meds even worth it? It seems it will just prolong his suffering.

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. Many many smaller diseases but the only thing that looks like it imminently stands to kill him is the pulmonary fibrosis, which although quite bad already, can sometimes be slow progressing. To my very inexperienced eyes he seems close to death but I know some people can live a long time immobile and on oxygen so I don't really know.

As an RN, I agree with not going on hospice until you know death is going to happen within a couple months. People DO get taken off hospice and it can create a real hassle. By the time my dad was ready for hospice, he wanted all his life improving meds stopped. He said it was only making him suffer longer. He definitely was on a lot of morphine by the end, more than I can imagine any non hospice doctor prescribing. But he was also very clear in his wishes that pain management was his number one goal. He was in 24/7 agony before hospice.

I'd look into palliative, like a PP suggested. My dad met with palliative care during his last hospitalization and they were wonderful laying out different realities and helping our family figure things out.

Professionally and personally, I've seen good and bad hospice. If you go this route, please make sure to ask around for others experiences.

Is your dad in the right frame of mind to be making decisions? Does he have his advanced care directive planned out?

I posted previously about my dad losing medical care due to going into hospice care at home. Someone above posted that it’s not a big deal to go in and out of hospice. I disagree with that because you lose your doctors as I noted above. But I also wanted to add that you lose your equipment. They gave us equipment that we trained all our self paid caregivers on which took a lot of effort for your lift, bed, wheelchair, etc. When they terminated hospice after six months because he didn’t die, they came and took all that equipment. We were left abruptly with no hospital bed, no wheelchair, no way to lift him.

Also someone above suggested talking to Hospice to help you make the decision. That’s fine, but just be aware that these are profit making enterprises, and they want you to say yes to Hospice, and will urge you to do so. You can’t rely on them to give an unbiased opinion,

They get paid a certain amount per day by Medicare. I think it’s something like $30,000 a month. They get that regardless of what care they provide so they are financially incentivized to do as little as possible.

I also just witnessed another relative go through what someone described above, were they basically morphine them to death.

Do not put your parent in hospice until they are very much dying. Like don’t do it until you think they are within weeks of their death

Try to see if palliative care exists in your area.

My dad had end stage cancer when he went on hospice and they were amazing. We weren’t treating his cancer anymore, it had progressed too far, so I can’t speak to them discontinuing drugs. But they were able to make him comfortable and when his pain could not longer be managed at home he was able to move into their hospice facility. They were so wonderful. We used Montgomery Hospice. He passed away at the Casey House.

For my mother, hospice provided relief and guidance for the end of life process. They provided, oxygen, a hospital bed, supplies, visits weekly and then more frequently as she declined, support during emergencies, and most importantly, the ability to keep her out of the hospital. My mom had severe dementia and allowing her to be in her own (independent living) apartment with her familiar things and caretakers was a blessing. They also supplied morphine which we only needed once a few days before the end. I started with them 3 months before she died at 101.

Anonymous wrote:

Anonymous wrote:Do you know for sure the medication wouldn’t be covered?

I don't know *for sure* but it's an insanely expensive drug (ofev) generally understood to be used to treat a disease (pulmonary fibrosis) rather than enhance quality of life, even though enhancing quality of life is definitely a secondary effect. I can't find anywhere to check that gets specific with medications. Everywhere I look lists general guidelines which heavily imply to me that it would not be covered. If anyone knows of a resource where I could look/call that will know specific medications rather than guidelines, I'd love to hear it.

You don’t go to hospice until you’re ready to stop all care that prolongs life

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.

We kept our same doctors.

That doesnt make sense. They are no longer allowed to treat you once you are in hospice. Hospice fired my dads doctors and made us use the hospice doctor who LITERALLY NEVER MET HIM OR EVEN DID A VIDEO VISIT.

Why are you “treating” someone in hospice? Why keep someone in pain?

Call and have a meeting with hospice. That helped us with the decision as we got more specifics.

If you aren’t in agreement I would not do it. We did and ended up enrolling, disenrolling, and enrolling again because we were not ready to say no to treatment (in this case, IV antibiotics that had to be administered in a rehab facility). But you can go on and off hospice — it’s not a big deal. The hospice will go through all medications and remove any that are not for comfort. You can pay out of pocket or try to argue but the doctor will have to approve. You can have all these discussions with them and choose not to enroll. They want to make sure you know what you’re getting into if they are a good hospice.

Anyway, it got to the point for us where the treatments were torture themselves. This situation is a little different because my loved one was in memory care with late stage dementia. Each hospital visit was torture because they are disorienting and dementia patients just get sedated with Haldol and not really taken care of well. And the hospital visits were getting more frequent because pain wasn’t being managed (this was an expensive memory care).

Once on hospice, memory care had to call hospice first, not just send to the hospital (which they tend to do when they don’t know what is going on). Then hospice would send a nurse at all hours to assess and decide what was best.

It was also impossible to get pain medications stronger than Tylenol and adequate any anxiety medications through memory care. They are very hesitant because chemical restraints since they are against licensing. Hospice enrollment provided that as well as extra bathing, nursing visits, oversight, a plan for death, strong medications, 24/7 support, a social worker, all supplies diapers and oxygen, skilled nursing support, and more.

There comes a point where you know your loved one is dying. You can’t cure them. You just want them to be calm and not in pain. To have a peaceful passing. You want a plan for death and have support through it for yourself and your loved one. Living is torture. You know the disease progression. You know what’s coming and quality of life is zero. That’s when you opt for hospice. So definitely think about whether your loved is at that stage or not.

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?

My father got regular morphine injections with hospice. They told us morphine made breathing easier. He never struggled to breathe..he just stopped.

Same here. My father was out of pain, but personally I felt like they gave him morphine until it was at a level that he passed away. He was lucid when he went into hospice but rapidly deteriorated and was not lucid once there. I have mixed feelings about it. One the one hand, he wasn't it pain and he would have had an awful quality of life if he stayed alive. On the other, I felt like they accelerated his death.

Anonymous wrote:Do you know for sure the medication wouldn’t be covered?

I don't know *for sure* but it's an insanely expensive drug (ofev) generally understood to be used to treat a disease (pulmonary fibrosis) rather than enhance quality of life, even though enhancing quality of life is definitely a secondary effect. I can't find anywhere to check that gets specific with medications. Everywhere I look lists general guidelines which heavily imply to me that it would not be covered. If anyone knows of a resource where I could look/call that will know specific medications rather than guidelines, I'd love to hear it.

Do you know for sure the medication wouldn’t be covered?

I can't weigh in on the hospice part, but I urge your family to come to an agreement about what interventions will be done if your dad is hospitalized. Does he want to be intubated? Does everyone understand and accept the progression of the disease?