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My father is 92, very frail, and declining rapidly. He is bed-bound about half the time, and in a wheelchair the rest. He cannot stand at all and has to be transferred each time. He has bowel and incontinence problems and we are worried about bedsores. His PCP has made it clear he should be on hospice and have a DNR. My father does not have dementia, yet doesn’t understand things well. He does not accept his own mortality and refuses to sign a DNR, which is a horrible choice given his condition. His PCP won’t refer him to hospice without a DNR. He is in assisted living. They are helpful, but they can only do so much with his care. We really need hospice advice and direction on so many issues. My POA is only valid when my father cannot make decisions for himself. How can I get him appropriate care when he refuses a DNR? I am very frustrated and having to make decisions I am not qualified to make.

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His PCP is absolutely in the wrong to refuse a referral without a DNR. No one can be obliged to make these advance decisions, which depend absolutely on the freely given and informed consent of the patient for their validity.

We have had a big push for people to complete what are called ReSpect forms here in the UK. These forms include DNR instructions and the like, usually setting out the person's health care priorities - quality of life versus sheer survival, for ward-based care but not ITU, declines transfer to hospital, that sort of thing - and they are of great value to families, paramedics, anyone who has to make a decision on another person's behalf in an emergency. But on a handful of occasions clients have told me they're not happy with what's been written and asked what they can do about it. They can rip it up, is the answer, to which I add a strong recommendation that they make another one that they are happy (happier, anyway) with.

So: challenge this stipulation on the PCP's part. Ethically, it sucks.
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Hospice without a DNR is a contradiction in terms. The DNR is a given.

I'm surprised the AL didn't have him fill out a DNR or a POLST form upon moving in. Both nursing homes my mother lived in required them just to be accepted as a resident.

Maybe check with the AL to see if there was a POLST filled out. The hospice folks might accept a copy if he does.
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A DNR or POLST is strictly VOLUNTARY and a person or their POA can not be made or forced or coerced into signing a POLST or DNR.
Call the Hospice of your choice, interview a few if you wish.
They will determine if dad is eligible for Hospice services. They will contact his doctors.
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I am sorry you are going through all of this. I am in a similar situation right now with my mother and had this same situation when my dad was still living. Neither one of them wanted a DNR and with my dad I received repeated phone calls from his group home about signing one to get him on hospice. Hospice would not take him without a DNR but my dad wanted to have medical treatments done to keep him alive and that was his right. We got down to the very end before I ended up having to tell the hospital not to put him on a ventilator because I knew he didn't want to be on life support and the doctor told me he would never get off the ventilator. He passed an hour later. After all this with my dad I talked to my mother about giving me permission to sign a DNR sometime in the future when the time was right; she would not sign one when we talked. She raised such a huge fuss that the nursing home social worker got involved and I had to drop it. Now she is at a point where I don't think she is going to be here much longer and she is a full code and I can't do anything about it. At least she is in a nursing home already getting all the care that she needs but I dread what is going to happen when they need to resuscitate her. She is in the hospital as I write this. I wish you luck with your situation. I know how difficult and stressful this situation is. Right now you just have to go by what your dad wants no matter how stressful it is for you. Believe me I understand.
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DShigley Nov 2022
Oh, you are making me cry! So comforting to know I am not the only one. We will plod ahead, and discuss moving him to a nursing home if that becomes necessary. Thank you, and I am sorry you are in this situation.
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I am so sorry. It is up to each individual as to whether, nearing end of life, they wish to be a DNR and refuse treatment. You are correct that Hospice care cannot be given unless a patient requests it, wishes no further treatment for cure, and recognizes that he or she is approaching end of life, and accepts same. So basically the long and short of it is that your Dad doesn't qualify for Hospice. You are also correct in knowing that this isn't a great decision. But it is HIS decision and that's what's important.
Do know that Hospice is much changed over the marvelous mission it was when it first began here in the USA having come over from across the pond in Europe. It has now come into the Military Industrial Complex for profit realm, and is quite limited. You basically have an aid for bath three times a week, a nurse once a week and the ability to contact a social worker. I currently have a friend dying at home on hospice. Her Social Worker doesn't know as much as her friends about how to access needed things. Medicare pays huge amounts to hospice agencies, and it is kind of a shame to see, for this old, retired RN. Hospice used to be such a godsend. While it's the best we have, it isn't what it was, and you honestly may not be missing a whole lot without it.
I am so sorry you are going through this and I surely do wish you and your Dad the best. Don't press Dad to sign a DNR. Let him talk and allow him to make his own decision.
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DShigley Nov 2022
Thank you so much for your thoughts. We aren’t pushing him on the DNR, but will revisit the issue at the next major inflection point in his health. We have also considered hiring a private duty nurse to provide some support and direction to us and the caregivers. Maybe that would be better anyway.
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You know my dh aunt has been off and on hospice for over two years now and we just turned in a DNR this week. Try a different hospice. I’m all for DNRs but unless it is a requirement of the particular ALF he is in, I don’t think it is a requirement of hospice. Your post reads like it is a requirement of his primary. Hospice has their own doctor.
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DShigley Nov 2022
DNR is not a requirement of the PCP, but the PCP believes it is a requirement of Hospice. I have a call into a different Hospice to ask that question. Thank you.
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You say he does not have dementia yet doesn't understand things well......which is the definition of dementia, pretty much. If your father cannot comprehend that CPR will break his bones and, that intubaing him will possibly put him into cardiac arrest as it did my 65 year old sister in law, then it's an indicator he's cognitively impaired. Furthermore, he needs to comprehend the fact the only way the AL will allow him to stay is with hospice care, and that means he signs a DNR. Otherwise, he goes off to a nursing home where he won't be as comfy, etc, so he can go back and forth to the hospital for life saving techniques to take place on his behalf. My dad was in this EXACT position, so he chose hospice bc he fully understood his options as there was no dementia involved. I strongly suggest you get dad tested for dementia via a MoCA or SLUMS mini cognitive exam to find out. If he fails, then your POA activates and that's that.

If he passes, then I suggest you buy the book Proof of Heaven by Dr Eben Alexander, a neurosurgeon who had a near death experience. Afterward, his fear of death was gone completely and his entire life was changed. If you can find a way to help your dad alleviate his fear of death a bit, then he won't want to extend his misery on earth any longer than necessary. Read the book together and it may be just the ticket.

Best of luck.
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DShigley Nov 2022
Hmmm, interesting. His PCP has not mentioned concern about dementia, but I will check out those tests. Thank you.
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The purpose of Hospice is to let nature take its course. Meaning no extreme measures are going to be taken to keep a person alive. There will be no visits to a doctor or a hospital. Dad will be given Morphine for pain and ease of breathing and anxiety meds when needed. A DNR needs to be signed to get Hospice. Dad has to be ready to except it.

I am surprised that the AL has not asked you to send him to LTC since they are limited in the care they can give.
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DShigley Nov 2022
Yes, thank you. AL has been supportive so far, and indicate they can keep him “till the end” IF he is under hospice care. Our fear is we will have to move him to someplace he hates.
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Try to have a medical person really explain to him what will happen if doesn't have a DNR and they must try to resuscitate him. It is not a quick "give me the paddles" and you're zapped back to life. It is people beating on you, breaking ribs, etc. It's potentially being on a ventilator and being unconscious with a machine breathing for you, forever. And at his age he only has a very limited chance that resuscitation would be successful. I know my father had a hard time agreeing to sign a DNR but after realizing that it would mean a peaceful death rather than a painful and very frightening experience, plus he'd most likely die anyway, he agreed. Until he really knew what would happen he thought it was something that would actually prolong his life at an acceptable level of quality.

https://theconversation.com/do-you-want-to-be-resuscitated-this-is-what-you-should-think-about-before-deciding-105506#:~:text=CPR%20involves%20repeated%20chest%20compressions,in%20turn%20to%20restore%20life.
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DShigley Nov 2022
His PCP did have the talk with him, to no avail. We may have to try again. Doctors make him nervous. Maybe I will try a nurse.
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If he is still cognizant, he has every right to refuse a DNR which of course makes him ineligible for hospice.
He has the right to fight to his very last breath no matter how hopeless it may be.
But, I would talk to him about his fears and if possible understand his views of end of life.
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DShigley Nov 2022
Yes, he does have that right. And we don’t want to compromise his rights. It’s just that it is preventing us from getting him the care his doctor says he needs. He has no vision for his end of life. He is in denial despite the obvious. We just want to do the right thing. We will try the conversation again.
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