Is Hospice a mandatory program? Sure seems like it!

[jjdespero]

What is the name of your state (only U.S. law)? California

My father was diagnosed with End Stage Liver Disease, Cirrhosis. He is not expected to live beyond the end of the year. The diagnosis came in about a week ago and Hospice was 'mentioned' by his primary care physician. However, nobody told us that the HMO 'case worker' would pester us sooo much about enrolling him in the Hospice program.

We were initially contacted by one company, but my mother turned them down because they wanted a power of attorney that would allow THEM to do whatever they wanted in regards to my dad's health, safety and ultimately his death. WE as a family; mom, brother and myself, have been taking care of him for the last 5 months. About 30 hospital visits, about 30 hospital days, a month in a care center. And we are NOT tired or beat or hesitant in any way to keep caring for him until the end of his life. My mom retired, I work normal 40 hour weeks and my brother has also stopped working over time, in order to overlap our times to care for him. We also get assistance from his sister, his nephews and a couple of his friends. He is WELL cared for! Even so, the HMO case worker is pushing our buttons REALLY HARD to put him in the Hospice program. At one point one of the reps actually said "Well, you have to choose one (hospice) because you can't take care of him forever!".

WHY??? As far as I have researched it is not mandatory. Yet every time we go to the hospital we get drilled by the nurses and doctors about putting him in Hospice! We keep telling them that he is not lacking care or love in anyway. We want him, and most importantly HE wants to die in the home that he and my mom bought and where they raised their children.

Could the HMO LEGALLY stop their coverage because we refuse Hospice?

We are not going to give up our right to make decisions regarding this health, well-being and his passing.

 

[cbg]

What does your insurance policy say?

 

[jjdespero]

Went back and read the hospice section from Anth*m Blu* Cro** and I didn't find anything about it being mandatory.

If you elect hospice services for a terminal disease or illness, you also will be entitled to services from your attending physician, if he or she is not an employee of the hospice, and to services provided through the hospice. If you make a hospice election, you may revoke it at any time.

and...

"Anth*m Blu* Cro** will make hospice services available on a 24-hour basis to the extent necessary to meet the needs of individuals for care that is reasonable and necessary for the palliation and management of the terminal illness or disease and related conditions."

 

[mmmagique]

Just so you know, Hospice will come to your home. They don't have to be there 24/7. (my dad died in his home and had a hospice care worker that came a few hours per day)

I'm not trying to talk you into anything; it sounds like you have it handled. I just wanted you to be aware.

I'm sorry about your dad.

 

[Gail in Georgia]

Hospice is not mandatory and, as been pointed out, it is often a program that is discussed with a family dealing with a terminally ill loved one (and certainly with a patient who has had 30 hospital visits).

It is always the caregivers choice as to whether they wish to participate in this program. Even if a family agrees, they always have the option of discontinuing hospice should they wish to.

Gail

 

[ajkroy]

What does the patient think??

I'm thinking that the OP doesn't truly understand the scope of what caring for someone with a terminal illness really entails...nor what Hospice can do for him. Hospice employees are some of the most professional nurses that I've ever encountered, and all they do is help patients and families prepare for death in the most dignified and comfortable way possible. If your Hospice nurse notices that your dad is having trouble ambulating around the house at his Monday morning visit? A walker or wheelchair will be at your doorstep by Monday afternoon. If she/he notices that the meds aren't keeping him as comfortable as they used to? One phone call and new meds are delivered to your door within hours. Having trouble toileting? Put this over your commode and it will help. It doesn't mean that strange people will be bathing your dad for minimum wage -- it means that a medical professional will see that all his needs are met all the time without having to take him to the office.

I've only ever known one family to ever refuse Hospice and that was a cultural issue...and even they eventually got on board. They were actually upset that they had refused it for so long.

OP, talk to others in your community who have used the Hospice resources there. See if that changes your mind.

 

[jjdespero]

Thank you for all the replies.

My father is the one that is most against someone else coming to care for him. He doesn't even want my aunt or his own mother to see him in his current state. He is not suffering from any mental issues, yet, but he IS starting to have trouble moving around the house. Collectively the whole family AND my dad are against putting him in a home, facility or hospital. My mother is against hospice visits because of the whole "stranger in our house" issue. My brother is just following my mother's lead. I personally don't like the idea of someone else "taking over" for us when it comes to making decisions.

I personally would be content with hospice visits and potential admittance into a facility AS LONG AS we don't have to sign any powers of attorney or documents that take away our rights to make decisions for his care.

Thank you all again for the replies. God bless.

 

[Just Blue]

Thank you for all the replies.

My father is the one that is most against someone else coming to care for him. He doesn't even want my aunt or his own mother to see him in his current state. He is not suffering from any mental issues, yet, but he IS starting to have trouble moving around the house. Collectively the whole family AND my dad are against putting him in a home, facility or hospital. My mother is against hospice visits because of the whole "stranger in our house" issue. My brother is just following my mother's lead. I personally don't like the idea of someone else "taking over" for us when it comes to making decisions.

I personally would be content with hospice visits and potential admittance into a facility AS LONG AS we don't have to sign any powers of attorney or documents that take away our rights to make decisions for his care.

Thank you all again for the replies. God bless.

No advice...just wanted to say how sorry I am for what you and your family are going through..

Bless you all

Blue

 

[cbg]

I personally would be content with hospice visits and potential admittance into a facility AS LONG AS we don't have to sign any powers of attorney or documents that take away our rights to make decisions for his care.

I cannot even imagine why you would be required to do that. Has anyone suggested that you should?

 

[I'mTheFather]

I personally would be content with hospice visits and potential admittance into a facility AS LONG AS we don't have to sign any powers of attorney or documents that take away our rights to make decisions for his care.

I cannot even imagine why you would be required to do that. Has anyone suggested that you should?

One company that contacted the mother did ask for POA, per the initial post.

 

[cbg]

Gotcha. I can't imagine that's standard, though.

 

[I'mTheFather]

Possibly not, though when my father was in a nursing home, they asked for a medical POA. However, he was not capable of making decisions about his care, so that may be the difference.

 

[cbg]

A few places I looked at recommended that SOMEONE have a durable medical POA, but were happy to have it be a family member. Just so long as someone was able to make decisions when/if the patient couldn't.

 

[mmmagique]

Please also keep in mind that hospice workers will have access to pain killing medication that you would probably not be allowed to have. As time goes on, you may decide on having Hospice in a few hours a day just for that, rather than to see your beloved family member suffer.

 

[RRevak]

When my grandfather was in his last months we had a hospice worker come to the house to help my father care for him. She was amazing and my father stated on more than one occasion she was a lifesaver for him because caring for a dying parent without aid is much harder than people realize. Since my father was his POA, the agency never asked that be transferred to them. They came, saw to my grandfathers needs, made adjustments when needed, and helped my father work through the motions of how to properly handle the situation the morning he passed. She was incredibly professional and supportive and did ONLY the job she was there to do.

OP I STRONGLY urge your family to sit down and consider help, especially as things progress for your father. Its one thing to care for him when you have a hospital assisting, its another entirely when its all on you. There will be times he will be in extreme pain and that is a sight that can be very traumatic to family members, esp if you have to either travel for remedy or wait for ambulatory assistance. If he becomes combative at any point you or your brother are unavailable do you feel your mother will be able to handle the situation? If he needs total assistance to use the facilities do you feel your family or yourself will be able to safely lift him then clean him without potential injury? If he becomes completely bedridden are you qualified to understand issues like turning, spotting possible issues w circulation, and wound care should they arise? if he becomes totally incontinent will you all be capable of cleaning him, using adult diapers, and moving him to put on and remove the diapers, esp if you're alone? These things are things you need to be considering in your decisions to not allow someone to come in to help because having been there, they will eventually become issues you will have to deal with. Are you truly prepared to handle them all by yourselves? A visiting hospice worker would be able to assist in current issues then give you the tools you need to carry on care and treatment until they return. As long as you are all very clear with the hospice agency that one of you has legal POA and all your i's are dotted and t's crossed, there should be absolutely no reason for them to require transfer. Please at least consider the home visits.