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This is happening to me with my mother and also happened when my dad was near the end of life. My dad wanted to go to the hospital to receive treatment when needed and my mother has told me that if needed she wants to go to the hospital. She told me this two weeks ago when she had to be hospitalized. She is a full code and that is what she wants.
Both of them had/have a diagnosis of dementia but when they made these statements to me they comprehended their decision. I am receiving repeated phone calls from people from the nursing home, hospital and others encouraging me to put my mother on hospice and signing a DNR and they were doing the same with my dad when he was still living. These phone calls about this are coming several times a week and sometimes from someone that I had already talked to about this a few times before. My understanding is that by going on hospice my mother will not go to the hospital for any care anymore. This is not what she wants. This is becoming very upsetting to me. I started crying when the nursing home social worker called me about this earlier today for the third time. I am supposed to be doing what my parents wanted/want, not what the nursing home and hospital want or what I think should happen. How do I deal with this?

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Just hang up? Don’t answer in the first place? No need to be polite when being harassed like this.
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drained Nov 2022
Thank you for your response. I am starting to get my head clear about what decision I should make with all the responses I have received. You are right that I really feel harassed by all of this.
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You can follow the wishes of your mom but, and this is difficult to read/hear/understand...
Many people do not fully understand what happens with CPR, Intubation and other "extraordinary" measures.
You see CPR on TV, in the movies and it works great.
What you do not see is the reality of it.
CPR in most cases, if and when done properly will break ribs, may crack the sternum. If the ribs get broken there is the possibility that the lung will be punctured.
Recovery from a bruised rib is difficult let alone a broken one. There is a good possibility of developing pneumonia because of it. there is pain when moving, coughing, talking....
If the person is intubated there is a good possibility that they will not be able to breathe on their own again and will remain on a ventilator.

While there is a chance mom may recover it is understandable that you would honor her wishes BUT if she were to lapse into a coma I would urge you to reconsider what this could mean.
the question would be would your mom want to live out the rest of her life, how ever long it might be on machines that are keeping her alive? Or would she be in pain from broken ribs and have to be drugged so that she would not be in constant pain.

You are right, if mom is on Hospice she would not be taken to the hospital.

If you steadfastly wish to honor your mom's wishes just keep telling the medical staff that you will not sign a DNR or POLST and that you want them to stop asking you.
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drained Nov 2022
Thank you for your response. I do realize the trauma that CPR, etc. are going to cause and I don't want that. I am trying to make the best decision for my mother while still following her wishes.
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If your mother made a decision to extend her life at all costs after she was diagnosed with dementia, then you have to wonder if she knew what she was requesting? A full code means she wants CPR administered to her if her heart stops; CPR breaks an elder's bones and causes a lot of harm and pain to them. Extending an elder's life when dementia & other health issues are at play seems like a cruel thing to do, in most people's opinions, which is likely why you're getting repeated phone calls about signing a DNR. It makes little sense that your mom would want her life extended at this point, with dementia at play. Furthermore, if she does want life extending measures to be taken on her behalf, then hospice is NOT a viable option b/c they will NOT take her to the hospital for treatment but allow nature to take it's course while keeping her comfortable. If hospice is not going to be an option, then you'll have to hope and pray that mom is in not in a lot of pain during her end of life journey b/c the hospital (if she's IN the hospital) will only offer SO much pain medication to an elder (who's not under hospice care).

You'll also possibly face decisions about PEG feeding tubes, ventilators, and other life extending measures often taken in life threatening situations. There is a lot for you to think about here, in reality.

How you deal with this is you abide by your mother's wishes, IF you feel that she was cognizant enough to make the decision to be a full code when she made it. My heart goes out to you b/c the last thing in the world I wanted to do was extend my poor mother's life when she was dying of dementia & heart issues, or my father's life when he was dying from a brain tumor. It was a blessing when hospice came in to keep her & dad comfy while they passed, and they both did so quickly and without pain or suffering, thank God. She and my dad had willingly signed DNRs years earlier b/c they did not want unusual life saving measures taken to keep them alive (especially not with dementia at play). I think they were more concerned with pain & suffering than they were with anything else.

Keep reiterating your stance to those who call you about signing a DNR for mom, letting them know that she wants to be kept alive at all costs.

Wishing you the best of luck with a difficult situation. Sending you a hug and a prayer for peace with your decision.
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drained Nov 2022
Thank you for your response. I realize I will have to make decisions about PEG feeding tubes and ventilators, etc. Fortunately she has in writing what she wants about those things so I know what decision to make for some individual items. I haven't ruled out signing a DNR or putting her on hospice but based on what she has said to me, and she did understand at the time we discussed this, I am going to have to get the rest of the family involved with this decision. All these responses are helping me to clear my head on this.
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What your Mom wanted in the past really isn't relevant. She is now at the end of her life and YOU are in charge of making the decision that is best for her.
I am 80 and was an RN all my life. I wish only that those families who wish their frail elders have heroic measures had to stand at the bedside and observe it. I wish, moreover that they had to have their own hands on those frail chest and FEEL THE BONES SHATTER beneath them. I wish they had to live with that torment.
I will say this only. You clearly indicate your Mom's wishes were to have all heroic measures. And you clearly do not understand what that means. Look up the statistics. It is for naught and it is quite hideous to do, to see, to observe this TORTURE for no reason.
Those who are reaching out to you know your loved one is at the end of her life. They know what heroic measures mean. They do not want to put her through this. They will KEEP reaching out. That is their mission and their duty and their vocation.
I cannot tell you to do something you are uncomfortable with. I CAN tell you that your Mom will leave you. No matter how much you wish her to stay. No matter how much her loss hurt you. No matter how much she wishes to live forever.
I am truly sorry and I recognize I have been brutally honest with you, but as a nurse I have been DNR since the age of 60. I am 80 now. God forbid my last recognition of anything is the shattering of my chest wall.
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drained Nov 2022
Thank you for your response. On the contrary I do realize the trauma that herioc measures are going to cause. I don't want this to happen and I want her to be comfortable for the rest of her life. Just a few months ago she made a huge ordeal out of me asking her about signing a DNR or allowing me to sign one when the time was right. I am going to have to really think about this.
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I'm sorry you have to go through this. Do what you feel is best. If you decide to let her go then know she still loves you no matter what.

If there is any positive, you won't feel the need to deal with any of these people ever again, though they will probably do that step for you.
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drained Nov 2022
Thank you for your support. This is a really tough decision for me based on how my mom feels about it. If it were for me I would want the DNR and hospice.
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drained,

I think that I may be able to help you with some realistic guidance here, based on personal and professional experience (retired RN).

I would suggest looking at this situation a different manner. When your parents were doing their Advance Directives, they were still in fair to good health and committed to remaining with each other for as long as possible, that's the commitment of any loving and lasting marriage. Neither of them could have envisioned themselves in states of severely failing health with organs and body systems shutting down, hospitalized and without each other. Elderly.

You are now their only voice of reason. Non-medical people don't understand what 'heroics' are in modern medicine and no one would choose it, knowingly.

I was assigned as alternate to one another by both of my parents in all matters and I had to make that dreadful call for my dear Dad. Both of my beloved parents were in ICU with CV19, Dad was on a vent and it blew a hole in one lung; he was too weak to survive surgery and it wasn't closing on it's own. I was on calls often with his nurses and doctors; they gave me thrice daily updates and I called in between too and arranged calls with dearest Mom and other family; they could only speak to him, that awful air hissing out of his lung the whole time. I finally made the call to go Hospice / palliative care only once it was clear that Dad could never survive off the vent. I arranged for a family member to be with him when extubated (I was unable to be there myself) and his poor dear body lasted less than an hour off the vent. I had to force myself to be guided not by my own feelings, but by the medical reality and by knowing that my Dad would never have wanted to live his life in a SNF and ventilated.

I'm Medical POA for Mom too and we all discussed our final wishes in previous years, we knew what quality of life meant and it wasn't just the ongoing, machine-supported life of the body. They both wanted to live full lives if heroic measures would provide that, otherwise, let them go. I have the DNR in Mom's chart and have refined the instructions, a form under the laws of her state of residence (90 miles from my home). No heroics, no feeding tube. But, I have specified that she must be treated in ER or ICU if it's something that she has a hope of recovering from. Like a septic UTI or breaks from a fall. Not from heart, pulmonary, or kidney failure, all of which she's in varied stages of, with dementia.

I worked in many areas as an RN: critical care, ER, many others, and ended my career in Hospice. I've been part of code teams and I can tell you that I would never, ever want heroics for myself at 65 or for anyone older. A code means chest compressions deep enough to crack ribs and puncture a lung, it means painful shocks to the heart. A Full Code means you do not stop, even when you know the body is all that is left, without hope of recovery or any spark of life. If a code and all the meds and vent and all are successful, it means having that beloved person lying there on life support in pain and with no hope of recovery. It means having to then call and end to it, after all of that suffering. This isn't like on TV, it's real and it's brutal.

As hard as this is, you have to ask the specifics of why they are asking, begging for a DNR. What are the labs, what all is failing? Ask yourself: Is there any hope of her recovering? Is she happy, fulfilled, looking forward to her days? Would she want to be spending her final months or years in bed or in a Gerichair, on a feeding tube, cared for by an endless parade of strangers? No dignity, no actual quality of life.

Please ask the hard questions and find out what organs are failing and what her prognosis is. As a code team member, it was awful to do heroics on anyone elderly, knowing that it was only a lack of information that had caused the Full Code status.

It's time to make the hard choices for her.

I wish you strength and clarity.
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drained Nov 2022
Thank you for your input. I am so sorry about your dad and I hope your mom is okay.
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Comes down to money. If humoring your mother’s desperate wish to have all sorts of heroic, pointless, expensive measures done to extend her life (well, her existence) is paid for by Medicare/Medicaid, then go ahead, let the docs pummel, PEG, prolong away, to the extent of their powers, and the extent of her coverage. Some people just can’t let go, when it’s obvious the time has come.
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drained Nov 2022
It is not that I can't let go, it is that I don't want to go against her wishes.
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You talked with your mother when she said that she didn’t want a DNR, she wanted to go to the hospital etc. Think back.

Was it a religious choice? There are still some people who have trouble with anything that terminates life, any life at all. Had your mother been talking to one of those people? It may not be sensible – anyone sensible and religious knows that God makes the decisions – but that has been the view of some for hundreds and hundreds of years. If that’s a reason, talk it through with her – even if she doesn’t fully follow you, explain to her as best you can.

And did your mother understand the CPR damage issues that you now know about? Did she really choose this, and the pain and damage it causes, when she said that was her choice? Would it have been her choice if she fully understood? Once again, talk it through with her, even if it’s just you talking.

It is clearly hard for you to go against what your mother said to you. Explaining to her why you may make a different choice, could be the best way to move yourself through this difficult time. Remember this 'conversation', not the old ones.
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drained Nov 2022
You do bring up a good point because when I talked to my mother about a DNR after my dad died she for a couple of weeks afterward kept telling me that she was going to make her own medical decisions and that it was between her and God. I have started the process of talking to my brothers about all of this and getting their input. I have decided that this needs to be a family decision. Thank you for your input.
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Where I live you can't sign a DNR for another person, not even with a fully-registered LPA.

But whatever the surrounding legislation where you live, what these people are doing is harassment. Have you tried a "read my lips" style answer on them?

Advance directives do not override clinical judgement where CPR would, in the judgement of the attending physician, be cruel and futile. You will be able to agree to stop. Do not let them bully you into fearing that your correct refusal to overrule your mother's clearly stated wishes means they'll be shocking her and breaking her ribs long past the point of no return.

Have another look at what the possibilities are, though. You may be able to specify what kind of treatment you can hold in reserve - long bone fractures, acute infection for example - for discharge from hospice in those circumstances.

Why did the social worker call you three times about the same subject on the same day? Did you ask her what she was thinking?
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drained Nov 2022
Thank you very much for your support and input. I have done a lot of thinking about this situation since I posted this and one of my brothers called me today so I discussed this situation with him because I really think this needs to be a family decision. I am sorry for the confusion. After I posted this I knew it sounded like the social worker called me three times on the same day. This is the third time she has called me about this but over a period of a few weeks. It is like she doesn't document our telephone conversations and I have been getting calls from other medical personel about this as well recently due to my mother's recent hospitalization.
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Although my mom had a DNR on file they still called me to see whether they should send her to the hospital when her pneumonia wasn't responding to treatment. I see no reason you can't sit with the DON to work out having a more nuanced directive on file at the NH - for example no heroic measures if she has a life ending heart attack or stroke, but ask for direction from you for other conditions?
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drained Nov 2022
Thank you for your response. I am going to talk to the social worker at the nursing home tomorrow more about what needs to be done and I have had contact with two of my brothers so we can have a family discussion on how to proceed with my mother's care.
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I had a nurse have that conversation with me when smy grandfather was in the hospital in 1983. He was clearly near the end, but she took me aside and told me that he was Full Code and if he started to go, they'd be obligated to try CPR. I was horrified at the thought, and I talked to my grandmother who eventually agreed to sign the DNR. He died two hours later.

Forty years later, I don't believe for one minute they'd have tried to bring back an 88-year-old man who was actively dying, nor would they do that to your mom. What I think a DNR is for now is more to allow a doctor to make the decision to let nature take its course rather than try to buy more time for someone who isn't going to get better. I see a DNR as I see hospice -- focusing on the quality of life left, not the quantity.

You have to decide not what your mom wanted years ago but what is in the here and now. She is not going to get better but neither is she actively dying, so the purpose of the DNR in my opinion is to give them permission to not interfere when she does begin the dying process. They aren't going to cut her off medical care, but they aren't going to perform life-extending care that is of no value to the quality of her life.

My mother was on hospice for eight months precisely because I didn't want her to be subjected to more hospital visits. She received far better medical care on hospice than she ever did in a hospital, and no one. “helped her along“ toward her eventual death. It was allowed to happen when it was time for it to happen. During those eight months, however, she received all her medication’s, extensive wound care, and her life was really no different than it was before she went on hospice. The medical professionals simply came to her instead of us, taking her to them.

she received all her medication‘s, extensive wound care, and her life was really no different than it was before she went on hospice. The medical professionals simply came to her instead of us, taking her to them.

By definition, hospice requires a DNR, because the purpose of hospice is quality, not quantity of life. I wouldn’t let that scare you, however. Hospice brought such peace to not only my parents, but also to our family at the end of both my mother and father’s lives..
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drained Nov 2022
Thank you for your response. I was actually told by someone at the nursing home that if my mom's heart stopped that they would have to perform CPR and then call an ambulance and send her to the hospital where who knows what would happen. I have been in touch with two of my brothers after posting here and we are going to have a family discussion as to how to proceed. I am thinking more clearly now. I just need some family support in the decisions that need to be made and I thank you and everyone else here who responded for your support.
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I ended up as guardian of my father and mom's POA. Both had some dementia, Dad's was vascular with a long term decline while Mom's was MCI for several years before any dementia symptoms showed up mildly in the last couple years of life. Dad wanted everything medicine could do as long as possible (a life long belief) while mom wanted care as long as she was expected to make it home. How to implement those choices as their health declined was left to me.

Dad's dementia became a state where he was generally depressed (even with medication and therapy), in MC, while still enjoying some moments in life. He had coded during a heart attack before being hospitalized in the MC and on some bad days I would feel I was the cause of his suffering; if only I had let him go instead of pushing for aggressive care. When his heart rate was going so low during his sleep and increasing the risk of stroke, he had a pacemaker. As he increasing had "episodes" where he became over upset, had his blood pressure go sky high and his heart irregular, requiring sedation to get things back under control, I signed the DNR. He was in the hospital to stabilize his medications when he had an episode that created a massive stroke and his death. I'm at peace with my decision. He suffers no more.

Mom enjoyed just about every day of her life, even when spinal stenosis left her basically bed/chair bound. She slipped away one afternoon in her sleep so I never had to make that DNR decision for her.

It's very difficult to determine when the DNR decision is appropriate, weighing your parent's sound mind directions and the reality present circumstances have brought. For me, it became about quality of life. Mom wasn't able to do much at the end besides sing, read books to her great-grandson, fold clothes, and dice apples for salads and pies. She had covid and flu vaccines and attended her adult day care whenever she could. She had some pain from arthritis and stenosis but it was manageable. Even as I planned to move her into a local MC, I believed her life still had quality in every day. Dad became tormented by his dementia. He did not enjoy much of anything anymore; not visits from his favorite son and nephew, not sitting in the rocking chair on the porch, not watching the hummingbirds outside his window. So I decided to continue all routine treatments but if he had another heart attack to let him go; his suffering would be over. So I signed the DNR on his last hospital visit. YOU make the decision. Listen to what the "experts" have to say but make the informed decision yourself. If they keep pushing tell them to stop harassing you. Start telling them you do not want to hear from them every week/day.
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drained Nov 2022
Thank you for sharing your experience with your parents. This is really how I want to handle things, on a day to day basis depending on quality of life and what my mother wants and not being pressured by medical personnel. I was glad that I didn't sign a DNR and admit my dad to hospice as was recommended because he wanted hospitalization and treatment for a condition he had and it worked for a while. He lived a fairly pleasant last year of his life, albeit in a group home, until the very end. I am going to keep a close eye on my mother now to try my best to do right by her.
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Being a DNR does NOT mean do not treat. Do not treat is a completely different thing. DNR is simply stating that in the event your mother's heart stops beating or she stops breathing that she will be allowed to have a natural death.

Recognize that when your mother made her wishes known to you, she was not diagnosed with dementia. In my opinion, you aren't going against her wishes to sign a DNR. She will still be treated for her medical conditions.

Most people have absolutely no idea how violent CPR is. Most also overestimate their chances of surviving and returning to their current quality of life. They have some fanciful notion that some thumps on the chest will revive them and they'll be eating dinner before the end of the day. That's absolutely NOT realistic! If the hospital is calling you I urge you to consider signing the DNR.
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I like NY daughters explanation. Mom can still be treated but if her heart stops, they just don't resuscitate.

I think you need to read a DNR form. They used to be just a simple paper saying no extreme measures will be taken. Now in my State they are much more. You can pick what you want and don't want. More like a living will. Unless you have medical POA, or something similar you may not be able to be sign off on a DNR.

What bothers me is that your being hounded. I would talk to a supervisor at each location. Tell them you want no more calls and if u get any, you will consider it harassment. That you understand what a DNR means and same with Hospice. That in Moms right mind, she said she wanted to be kept alive. If she has a Medical POA/directive it should read like a living will. No matter what anyone thinks, that needs to be honored.
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