Father refusing hospice care!

[Breezy_Carol]

He'd have to move I am guessing, meet new folks in the same situation as he is and get used to a new place. He may have friends there at the ALF he would miss too.

I work in some ALFs and Hospice will visit there. Often a person does not have to move to a new place.

to the OP and that your father thinks this over and changes his mind. My FIL had hospice at the end and it was wonderful.

 

[zalansky]

Jodifla...HUGS to you. It has to be very hard on you being so far away!

We had hospice with both of my parents who died of cancer too. My Dad was in major denial until his last day and had refused hospice too because I think to him, it was admitting he was dying and he could not and would not accept that. The only reason they were finally allowed in was because my sister and her husband were there caring for him and could no longer do it alone and they needed the help and expertise of hospice. They were a godsend. I can't say enough good things about them....I hope your Dad allows them in since they can provide all sorts of comfort.

Don't reply if its too personal, but how old is your dear Dad? What type of cancer? I am so sorry you're going through this....I didn't know until I saw your post today.

 

[DisneyDmbNut]

My Mom was doing all my Dad's care. Thank G*d for hospice. Could you speak with the hospice rep? Perhaps something can be worked out. Do you have a medical POA?

THANK GOD FOR HOSPICE!!!

My mother retired to take care of my Dad in 2003 because he he was dying of a brain tumor..not only did hospice come everyday to help her clean and rotate him, they provided the hospital bed so he could stay in the living room, they paid for EVERY medication including Tylenol..My father was on Medicare by then and they had no Rx coverage..my dad's medications would have cost hundreds of dollars a week..ALL PAID by Vitas Hospice.
They also provided a "sitter" so my mom could go do grocery shopping or just to get out and go to church. The last few days, they provided 24 hr care for him and took care of calling the funeral home and Dr. when he did pass away.

I really can't say enough about hospice...

 

[Pigeon]

I'm so sorry you are going through this.

I agree with the posters who say to let him have time to process this and maybe he'll change his mind. I also think hospice is great, but I can also see that it's not for everyone.

I have a friend who had hospice and really regretted it. It was just too touchy feely for him. They sort of forced a bunch of family interaction that just was not this guy's style, and made the whole family uncomfortable.

 

[jodifla]

I'm so sorry you are going through this.

I agree with the posters who say to let him have time to process this and maybe he'll change his mind. I also think hospice is great, but I can also see that it's not for everyone.

I have a friend who had hospice and really regretted it. It was just too touchy feely for him. They sort of forced a bunch of family interaction that just was not this guy's style, and made the whole family uncomfortable.

Yep too touch and feely wouldn't be my dad's either! An AFL helper was telling me last night she'd never seen a person as stoic as my dad.

My dad has signed a living will and all. But the truth of the matter I believe is that he's just to ready to die. He's had a very hard time talking about the cancer. He won't talk to me about it at all, in fact. Instead, he talks to other people about it when I'm in earshot.

 

[jodifla]

Jodifla...HUGS to you. It has to be very hard on you being so far away!

We had hospice with both of my parents who died of cancer too. My Dad was in major denial until his last day and had refused hospice too because I think to him, it was admitting he was dying and he could not and would not accept that. The only reason they were finally allowed in was because my sister and her husband were there caring for him and could no longer do it alone and they needed the help and expertise of hospice. They were a godsend. I can't say enough good things about them....I hope your Dad allows them in since they can provide all sorts of comfort.

Don't reply if its too personal, but how old is your dear Dad? What type of cancer? I am so sorry you're going through this....I didn't know until I saw your post today.

Thank you for your kind words!

My dad is 81 and has throat cancer. He's a lifelong smoker and was a very hard drinker for most of his live. He only quit drinking last year, and he's STILL smoking! (Crazy, I know!) I think he knows that he's lucky to have lived this long with his long list of bad health habits.

I think I'll try to talk to him about it this weekend. Just focus on the pain aspect of it....

 

[zalansky]

Yes, if nothing else the pain management is the top reason you can use to maybe help get hospice in there. Again, many many hugs to you!

 

[Nancyg56]

Perhaps he is not comfortable with the services that were offered. My Mom passed on in January and she did not want all of the services that are available. She had a transitional service for Palliative care that the Dr recommended. I am sorry I cannot remember how it was described. Please call the social worker and ask what his pain level is and what Hospice services they feel would benefit your Dad. I know that when my Mom's breathing was so bad that her pain level escalated we needed to change the verbage to Hospice, although nothing else changed.

I will tell you that I had an issue with the Dr and my Mom's nurse told me that part of the problem was that the billing system changes with Hospice care, it is easier to charge for phone calls to the Dr and Morphine can be called in rather than be prescribed in writing. If you Dad needs pain meds and this would make it easier for the facility to get them for him, you may need to explain that to your Dad.

My mom had her directive in order and was not afraid to die when her time came. She simply wanted to be in charge of the way she chose to live and to die. While Hospice was a wonderful program for her, the way it was presented initially concerned her. She did not want any of the extras that bring the most comfort to others, to her they were intrusive.

My heart breaks for you, it is so hard to balance your Dad's wants with his needs, but perhaps a talk with him to see what he was opposed to and then explain how he will not be subjected to anything he chooses not to accept.

 

[JunieJay]

How sad. Wishing the best for your father, this must be a very confusing and frightening time for him.

I do know that hospice is wonderful. Period. Never have I heard otherwise. God obviously has sent those people who work in hospice to work as Angels here on Earth.

I'll say a prayer for your father.

 

[jodifla]

How sad. Wishing the best for your father, this must be a very confusing and frightening time for him.

I do know that hospice is wonderful. Period. Never have I heard otherwise. God obviously has sent those people who work in hospice to work as Angels here on Earth.

I'll say a prayer for your father.

Thank you so much.

You know, overall, I know everyone raves about hospice. The only people I know who didn't care for it were my dad's sister (for her husband's death) and a good friend's mom (for her husband's death). I think she even used the term vultures!???!

My aunt felt they didn't do enough, although she did say they were good for pain medication, which would mainly be what dad needs at this point.

I sort of want to tell him..."look, just take the pain medication to feel better. This doesn't mean you have to give up or die! just take the drugs and run (so to speak.)" I think that might appeal to him.

 

[shortbun]

We just told my Dad it was for us, not for him. He quietly agreed to most of their care. They were very good at being as inconspicuous as necessary. After they changed all his meds, he was very comfortable and very grateful. Find a way to get him to think he's doing it for you. Some people live a very long time because hospice reduces the stress of the illness. It could lengthen his life.

 

[jodifla]

We just told my Dad it was for us, not for him. He quietly agreed to most of their care. They were very good at being as inconspicuous as necessary. After they changed all his meds, he was very comfortable and very grateful. Find a way to get him to think he's doing it for you. Some people live a very long time because hospice reduces the stress of the illness. It could lengthen his life.

Good points. Thank you! I'll try this the next time I'm able to speak with him.

 

[Papa Deuce]

changed my opinion when I re-read the post.

 

[jodifla]

changed my opinion when I re-read the post.

well, this makes me what you said originally!!

 

[DisMN]

Perhaps he is not comfortable with the services that were offered. My Mom passed on in January and she did not want all of the services that are available. She had a transitional service for Palliative care that the Dr recommended. I am sorry I cannot remember how it was described. Please call the social worker and ask what his pain level is and what Hospice services they feel would benefit your Dad. I know that when my Mom's breathing was so bad that her pain level escalated we needed to change the verbage to Hospice, although nothing else changed.

I will tell you that I had an issue with the Dr and my Mom's nurse told me that part of the problem was that the billing system changes with Hospice care, it is easier to charge for phone calls to the Dr and Morphine can be called in rather than be prescribed in writing. If you Dad needs pain meds and this would make it easier for the facility to get them for him, you may need to explain that to your Dad.

My mom had her directive in order and was not afraid to die when her time came. She simply wanted to be in charge of the way she chose to live and to die. While Hospice was a wonderful program for her, the way it was presented initially concerned her. She did not want any of the extras that bring the most comfort to others, to her they were intrusive.

My heart breaks for you, it is so hard to balance your Dad's wants with his needs, but perhaps a talk with him to see what he was opposed to and then explain how he will not be subjected to anything he chooses not to accept.

Some excellent points! We too had to call it "Palliative" care. Medically speaking it meant the same thing as Hospice but it didn't have that doomed ring to it, something that I think helped my dad keep his spirits up. He really didn't want to dwell on the dying part so I do think just calling it something OTHER than Hospice is what helped him. Something to think about for your father?

 

[Honu]

I'm sorry for what you are going through. My dad's choice was to be in a hospital in the end. He didn't want hospice. He didn't want to die at home. It was very hard for him to ask for and accept help, even when he really needed it. I believe he viewed being in a hospital as being a paying customer, which let him detach from his feelings about not wanting to be a burden. We were completely willing to care for him, but he just wasn't going for it.

I don't know if this is where your father is coming from, I'm just throwing it out there in the hope it will help.

 

[arminnie]

I do know that hospice is wonderful. Period. Never have I heard otherwise.

Well let me be the first.

Hospice is a generic term referring to a service offered to the terminally ill. Just like hospital is a word that refers to many different facilities. The quality can vary greatly.

In many communities there are multiple providers of hospice care - just like there may also be multiple hospitals. It is imperative that you be just as vigilant picking hospice care as picking the right doctor or hospital.

Hospice is a fabulous service - but not all providers offer great (or even good service).

I unfortunately learned this the hard way with my mother (breast cancer). She received absolutely NOTHING from the hospice service provider except for the changing of her oxygen provider.

This is the part that is very difficult for me to write about. The oxygen concentrator (one of two) delivered to my mother did not work. It meant that she was only getting half of her required oxygen and she went into a coma. The hospice solution - NADA - let her die from it.

My mother's only grandchild had arrived - the night before my mother was totally lucid and ate a big meal. Yes she was terminally ill, but she would not have died so horribly and my nephew could have spent a day with his grandmother.

We waited several hours before we finally realized that they were NOT going to send out a replacement concentrator. We decided to take her to the emergency room only to be told that a hospice patient was NOT eligible for emergency care.

The reason that many people die within a week or two of obtaining hospice care is that in most cases it means NO TREATMENT whatsoever no matter what. Pain relief - yes. Any treatment (even if not related to the terminal illness) - no.

When my cousin's stepfather was terminally ill his hospice plan told them unconditionally not to ever call 911 (not even for a fall or broken leg). When it did appear that he might be dead they called hospice as directed. Hospice waited several hours to come out - really to make sure that he could not be revived just in case he was not dead. In my uncle's case that truly was a blessing.

I'm really not knocking hospice care (only the one I used). I've heard so many, many wonderful stories. It makes me sad not only did they hasten my mother's death but that they never provided her or any family members with any help whatsoever.

I can understand why someone might not be ready to die in the next week. That is a very, very difficult decision.

Accepting hospice care should not be a requirement for receiving pain relief. Please make sure that your father is getting access to pain relief even if he does not choose to participate in hospice.

 

[Nancyg56]

Some excellent points! We too had to call it "Palliative" care. Medically speaking it meant the same thing as Hospice but it didn't have that doomed ring to it, something that I think helped my dad keep his spirits up. He really didn't want to dwell on the dying part so I do think just calling it something OTHER than Hospice is what helped him. Something to think about for your father?

Actually is does not. My sister was under that impression but we found out that while most of the services are th same the ability to get medication is not. My Mom needed Morphine and my brother had to go to Hartford for the written script but when she was considered "Hospice" the Dr could just call it in. It was also easier to get a return call from the Dr because they are allowed to bill for the call when under Palliative care the Dr could not. Little things but major when my Mom's pain escalated.

We did not care what it was called but that misunderstanding made for a very long day.

 

[Nancyg56]

The reason that many people die within a week or two of obtaining hospice care is that in most cases it means NO TREATMENT whatsoever no matter what. Pain relief - yes. Any treatment (even if not related to the terminal illness) - no.







Accepting hospice care should not be a requirement for receiving pain relief. Please make sure that your father is getting access to pain relief even if he does not choose to participate in hospice.

I am so sorry that your family was not helped by the Hospice services. People are not denied treatment when under Hospice, they are not actively treating the terminal disease. My Mom had an infection not related to her lung disease and that was treated promptly, as were any other issues that she had. She simply stopped treatment of a disease when the treatment was no longer helpful for her.

People can get pain relief when they are not receiving Hospice services. The pain relief that people seem to require are morphine drugs and quite often a lot of that medication. Because is is a controlled substance physicians cannot simply prescribe this without oversight and they must follow certain guidelines. Once a person is in Hospice the guidelines are relaxed in order to manage the pain. Many of these people cannot get to the Dr office and now the script can be called right into the drug store, not picked up at the office. This is a program that allows people to receive very strong pain medications without having to be hospitalized.