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?
14 Answers
Helpful Newest
First Oldest
First
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.
ADVERTISEMENT
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.
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.
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.
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.
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?
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..
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.
See All Answers