Can I have more details about hospice?
I found out Mark was offered hospice and refused saying it was an immediate death sentence. He has liver cirrhosis, end stage kidney disease, fluid on lungs, and is on oxygen. The doctors have said he could be totally covered if he goes on hospice and still get diaylsis since his liver is not being treated. If he does not go on hospice, he will be in LTC and the ICU. I tried to tell him he can be more comfortable and that you can be on hospice longer than six months. The doctors said he has a year or two max. Yes, I am not POA, but I still would like Mark to be as pain free as possible. Is dialysis possible under hospice if the hospice is for the liver vs kidney?
I tried to explain to Mark hospice does not mean you will die in under six months. They will review him and it could be a year, two,
or more. I explained to Mark there will be pain management.
I think you said all that you could say to Mark. Ultimately, he has to make his own decisions about his care.
I have a feeling that as his time draws near, he will start thinking about hospice differently.
Let him process the information given to him by you and his doctors.
The only other thing that I can think of is to tell him not to wait until the last minute to start researching hospice providers.
All organizations used to provide more or less the same services. That is no longer true.
It’s imperative to know what services are provided by each provider that he is interested in using.
https://www.medigap.com/faqs/hospice-coverage-under-medicare/?subid=1AA4Q&theme=&placement=&network=x&campaignid=21115156985&adGroupId=&ext=&adp=&adid=&keyword=&account_id=8186477130&gclid=CjwKCAjwmYCzBhA6EiwAxFwfgFtDwrElGUb_zPcv4XKYhRkFnncT4JLgckOC6civjl-s9rziWzWYUxoCc2cQAvD_BwE
Something I found
"In most cases, patients can't receive dialysis while in hospice care because Medicare considers dialysis a curative treatment for end-stage renal disease (ESKD). However, there are some exceptions and programs that allow patients to receive both dialysis and hospice care:
Terminal diagnosis
Patients with ESKD and another terminal diagnosis, such as cancer, may be able to continue dialysis while in hospice care.
Hospice programs
Some programs allow dialysis patients to receive hospice care and dialysis at the same time. For example, Providence Hospice of Seattle offers hospice services to patients receiving dialysis at Northwest Kidney Centers who have a six-month terminal prognosis.
Medicare Hospice Benefit
The Medicare Hospice Benefit can cover both hospice and life-prolonging treatments for conditions unrelated to the hospice diagnosis. Hospices could then "carve out" dialysis if the ESKD diagnosis is unrelated to the hospice diagnosis, but this rarely happens in practice."
My question is...if he can continue dialysis, who is going to take him to the appts 3x a week.
My GF was on peritoneal dialysis. This is usually a last ditch effort. Her veins could not take reguler dialysis. She was going to be able to take it with her to dialysis but the Hospice Nurses had to be trained in it and she needed hospice then. If Mark is not readyvto give up, he is not ready for Hospice.
Ultimately up to the programs, but both hospice and dialysis facilities are more likely to accept this if the cause of hospice is far removed from kidney failure. For example, cancer is clearly unrelated.
“Medicare patients can receive care under both the ESRD [end stage renal/kidney disease] benefit and the hospice benefit. The key is whether or not the services are related to ESRD. If the patient's terminal condition is not related to ESRD, the patient may receive covered services under both the ESRD benefit and the hospice benefit.”
https://cgsmedicare.com/hhh/coverage/coverage_guidelines/esrd.html
That said, someone has to be accepting of hospice for it to be a productive service.
He wants to have treatments.
He doesn't believe he is at the end of life.
This is his decision. That's all there is to it and no one should be trying to "explain" why end of life care is the best choice for him.
Don't go there. To me that is a major no no.
I would only suggest that it may be available to someone.
Hospice is END OF LIFE CARE pure and simple. I am surprised if Mark can continue dialysis on it, but perhaps he can. Whether or not he can, hospice is end of life care, and all the fudging and playing around with people now saying "oh, not REALLY" and doctors suggesting it for extra help is nonsense.
I think it is wrong to suggest to someone that hospice doesn't mean you will die in six months because in fact an MD must write that HE/SHE believes the patient has six or fewer months to live. THAT IS THE LAW.
Leave this, doggiemom, as we say to out pups: "Leave it!!!"
Mark does not want end of life care. He wants to fight. There is nothing there for him but a few bed baths.
I would not interfere here and think you are wrong to try to get someone hospice. While I myself am all for it myself, Mark is ill enough for long enough to know what Hospice is and what it means and he doesn't want it and that, while it would not be my choice, is HIS, and he shouldn't be encouraged to do otherwise.
You are going to have the family and Mark and the nephew coming down on you like a ton of bricks, telling you that you are encouraging Mark to die. IMHO that wouldn't be your place even if you were still a married and devoted couple, and surely isn't now.
As to what hospice is, I encourage you to go online. It's all pretty clearly deliniated there.
No, if he lives more than six months they won't KILL him, but if he goes on Hospice he is saying he doesn't want more hospitalizations and treatments for his liver, and I doubt that's the case.
You know I love you, but don't do this.