Today I signed the form for DNR for my husband who is in a nursing home (admitted 2 weeks ago). Logically, the decision makes sense. Emotionally, this was a heart-wrenching act, especially so because he never made the decision himself, saying he would leave it up to me, as I would know what to do. The reality that Alzheimer's is terminal and that my husband will never come home again has hit me like a ton of bricks. Any thoughts on coping with the deluge of emotions associated with making the DNR decision?
I have no solutions to offer as I am in somewhat the same boat. My DH had an Echo recently and the nurse said to me " Do you know his wishes and do you have POA for health issues?" which tells me the echo was not good news at all...and in a couple weeks I have an appt with the cardiologist to find out how bad bad is... I feel for you. When there was a DNR in place for my Mom, the CNA at the house said " I know there is a DNR in place but I'll do whatever you want me to do..."It is so hard.
While I respect everyone has the right to make their own decision I refuse to sign any such forms. Everyone at the nursing home knows my decision is DNR. I'll sign that form when the situation comes up where their legal obligation is to contact me.
I will not resusitate because I have no way of knowing what the next thing to go will be and how much pain or suffering that will bring. Secondly I see no chance at quality of life returning for her.
It absolutely is gut wrenching and I'm angry that the disease may use my own hand to end this. I checked and they will go right up to injected morphine to help reduce any pain she may feel.
It's all part of the damage the disease does to the spouse. It's not enough that we have to put our spouse into a home. We also have to face decisions like this early because of the cruelty of the nature of this disease.
I continue to be impressed by my family and friends who seem to have a better grasp than I do that even though I've been alone now for over 1 1/2 years and am focused on trying to find a more normal life for myself, they get how hard the situation actually still is more than I do.
That they are never coming home again for me is truly heartbreaking. That makes sense because I loved her so much. At first it was very hard but it honestly has gotten much better.
There is a thread near the top of the bulletin board list for spouses with a partner in a residence in case you may not have noticed.
Tina, he knew you would do the right thing. We both signed one just after his DX. Please don't feel guilty about it. I know it's hard, but you did what you thought was the right thing to do. Be gentle with yourself.
I also signed one a couple years ago for DH. its like playing the super human. making life giving or taking decisions about someones life is very difficult. in our case, the quality of life doesn't warrant trying to bring him back from the abyss if that happens. in a way, staring alzheimers in the face, the alternates of going of something else seem a better choice. we both had dpoa for health care and our wishes are stated in that. so yes such sadness to have to make this decision but if its what they or we would want we must respect those wishes. everytime I look at it hanging on the door I cringe. doesn't get any easier with time. divvi
Tina, I too signed one of these and I understand the feeling you are going through. I really struggled signing it until a very kind surgeon at the hospital explained why I shouldn't resuscitate in a very kind and compassionate way. He also explained to me that DNR orders only applies to cardiopulmonary resuscitation in an emergency situation. He explained that this would only apply if Lynn went into cardiac arrest, and then ever so gently explained if that happened, we would not want to bring him back. It wouldn't be like a younger, well person needing it after a car accident for example. At this point if he were to go into cardiac arrest there would be something drastically wrong and just nothing we could do for him, to try to bring him back would only prolong his suffering....put that way it did bring me a tiny amount of peace.
Divvi, I don't know how you look at that every day, accccck!
My DH signed his own DNR this spring. He has Vascular Dementia and has had numerous small stokes and he doesn't want to have them bring him back and is concerned about ending up living as a vegetable. This has made it much easier for me as he has taken that decision out of my hands completely and I sure appreciate his doing this. When he goes to LTC soon this form will go with him.
I have signed one for DH and it was the hardest thing I have done so far. After, I was talking to a good friend and she told me about her neighbor. They are in their late 60s and the wife is in poor health. She has a DNR and when she had an event (not sure what happened) her husband called the EMTs. They resuscitated her and she ended up hooked up to all sorts of machines. She can no longer survive without them. She is confined to a hospital bed and will most likely stay in the hospital for a long time. The husband is sick, he wanted his wife well and back home like she was before. He now says had he known how it would end up he would had kept with the DNR order. Just sad beyond words. I think the situation we are in, a DNR order is ok. They are never going to get better. Sending you many (((hugs)))
Here is how I look at it. What will we be saving them for? So they can advance to end stage Alzheimer's Disease? I'm not saying it is easy to do, and I feel the same as Wolf. I HATE being put in the position to have to make this decision. But I feel that it is the compassionate thing to do. It is my opinion that not having a DNR for an Alzheimer patient is equivalent to rescuing them from a burning building, and then setting them on fire and watching them burn.
blue--and everyone, check the rules on compliance with a DNR. I found out our DNR for my DH was good for the Drs. and hospitals, but did not apply to EMTs. Call an ambulance and they will attempt to resuscitate. However, the DNR from Hospice will be honored by all. My DH had lost all ability to write _-even his nickname, but it came back and he insisted on signing the Hospice DNR himself, First middle and Last names. It was the last time he handled a pen. The decision was one we had discussed long before. I can't say I was comfortable with it, but it was right for him/for us and for the situation we faced. My main apprehension was the possibility of being asked "are you sure? We could do...." or having someone overlook or ignore the DNR. Never happened.
FYI to everyone. There are many more forms that direct care than just a "DNR" form and anyone involved in AD care really should be aware of all of them.
Disclaimer: the laws for these vary by state and locale so learn what is correct for your area.
The DNR form says nothing more than "When their heart stops and they have NO PULSE, do not start CPR". It DOES NOT address use morphine to relive pain. It DOES NOT address use of feeding tubes for someone who cannot swallow.
Wolf, I would suggest that you learn more about what you are (not) signing and reconsider. IF there is no DNR form on file then when the night CNA comes into your wife's room at 3AM and finds no pulse she must start CPR. They will NOT call you before they start CPR, there is no time. The decision to start must be made within seconds.
After the CNA starts compressions, the RN will call an ambulance (she is required to, because by NOT signing you have actually said that you WANT treatment) and the Paramedics will then give CPR and medications and transport your wife to an ER. You will then either get a call from the NH that she has been transported or a call from the ER that she has arrived. Either way she now has an IV and a tube in her throat connected to a ventilator. AND you now get to talk to the ER doc and discuss with him whether you want the medicines and ventilator to continue . . . Isnt it easier to decide those things before they are needed? AND you get a bill for the ambulance transport and the ER treatment.
(Side note - I got a $1500 ambulance bill and a $2000 ER bill for my father who was "Pronounced Dead on Arrival" and likely should never have even been put into an ambulance. The insurance has paid much less)
POLST - Physicians Order for Life Sustaining Treatment. (Google it) This is a DOCTOR'S ORDER about what you want the person to receive. This will clarify and specify whether you want the CPR/compressions thing AND whether you want a feeding tube and "comfort measures" such as pain medications. IF someone 'gets worse' (cardiac arrest? loss of consciousness? Stops eating?) then the POLST will be the doctor's order to the staff about what to do. If the NH staff panics and calls the Paramedics they would be reluctant to transport to an ER for care and treatment that may not be given.
A properly executed and followed DNR form does not mean "No Care"! Feeding, turning, bathing, dressing, pain control should all continue. Any decisions about chronic/daily treatments and care should be regularly discussed with the MD and nursing staff as part of a well writen care plan. Remember you have every right to help decide on the care plan. You must be the advocate about what is happening. If you don't like the care, you scream like a mama bear or move your spouse to another facility. (yes, I know not always easy)
A DNR form is also NOT EUTHANASIA! By signing it you are NOT killing your spouse. You are only stating what treatments you want "after they are dead" (cardiac arrest)
The living will and DPOA for health care (which you already have) also directs what you want (or dont) and can (in most situations) be used as a "DNR" but a facility may want something written on their own form.
My point is that the DNR form documents your decision about what should happen IN A MOMENT OF CRISIS. And this is just the time when you do NOT want to have to begin considering all the variables.
Signing a DNR is always revocable. I is usually in effect only in the state it is signed in. If a person signs it in Florida and goes north in the summer it will probably not be honored in NY.
Signed the DNR yesterday for my hb as he was admitted to home hospice. Big step, but the right step. There is nothing easy in caring for a loved one with this disease.
I used to work in a long-term care facility in the dementia ward. My husband used to volunteer with Alzheimer patients. We both know what having this disease means and where it will end up. As soon as he was diagnosed he signed a DNR and I supported him. If there's anyway he can avoid going the whole distance on this one he wants to take it. I only hope I will be strong enough to honour it at the time. I would want the same thing for me.
I looked up POLST and couldn't find it for Canada. What I did find was MOST - Medical Order for Scope of Treatment by the Fraser Health in BC. If anyone else finds it could you post it here.
Yeah, POLST is a USA thing right now and as you see not 'accepted' or promoted in all 50 states. http://www.polst.org/ http://www.capolst.org/
But the concept that the MD has written the orders about what to do is the main idea and I would think that can be translated across borders. Talking with the doctor about what you do and do not want and then writing it down BEFORE it is needed, is the important step.
me too ring hope I can be strong enough to go through with the DNR, and no tube feeding etc. Dado was alert enough when we filled out the Power of Attorney papers, to say he did not want to be kept alive.
I was in the ER with DH when he had Cardiac Arrest. A nurse leaped on top of him, put hands on his chest and was ready to start CPR. I shouted STOP. The DNR was on the clipboard right in front of them. They didn't even check. Good thing I was there. I don't think he could have been saved. But as Joan said why? What are we saving them for? More misery?. I love him too much for that. Carol
m-mman - the MOST looks like the same kind of document as the POLST. Each country/province/state has to have their own title. I don't know why each one has to do it up differently....why reinvent the wheel?
I didn't even get to look at hubby's DNR his GP got the form and signed it. No discussion with us and I'm good with that.
When my dh went to ER in April and they discovered that his kidneys had shut down, the doctor on staff immediately asked me what I wanted to do as far as keeping dh alive. Dh was alert enough to say that he wanted to stick around for a while longer. I didn't know how sick he was at that moment (turned out he was in renal failure). The next day the kidney team visited us to discuss dialysis. I said absolutely not to the dialysis and I could tell that they were going to fight me on that. I talked to our elder law attorney and he said that our Health Care Directives were all in order, but the hospital could fight me if they chose to. As it turned out, the kidney failure had a pretty simple fix (TURP) and when dh got rid of all the urine he had stored up in his bladder, all of the other health issues went away with the urine. At this point in his disease, he's still alert, mobile and healthy and the simple surgical procedure allowed him to function normally again. I think I made the right decision at this time but I would have made a much different decision if his AD was more progressed. And, I have to say, when the doc asked me about keeping him alive, I could of said NO and it would all be over today. I hated being put in that position and was very happy that dh could and did make the decision. I'm very happy to still have my man at my side.
In Ontario, a DNR is only good in the hospital. Paramedics are required by law to rescusitate a person if they are called to the home. We require a confirmed DNR which gives you a confirmation number to give the despatcher when you call 911. With that, they provide comfort care only and support for the other person. I had that for Gord as a doctor told me that CPR was meant for healthy, young people in a crisis situation. He said that he had never seen someone with Alzheimer's or even an older person recover well after heroic measures.
I don't know if I would have used it. I know that it never occurred to me when Gord was in the hospital to with hold antibiotics. To me, that is part of comfort measures. I was upset when a person I know whose husband was dying, refused to allow Tylenol. She told them there was no point as he was dying. To me that too was a comfort measure.
When my father died the hospital offered but didn't push any treatment. The doctor discouraged a feeding tube (I now understand that would not have helped him but made his death more painful) and dialysis seemed awful. I knew that my father would hate it and was in late stages of CHF and didn't have any veins to hook into. We changed him to hospice, which was consistent with how he made his wishes known to me for over 40 years.
ER can be different, they will not take time to look for a DNR. This is important, because if there is no DNR they shouldn't be taking time to look for one. However, some medical people and hospitals will ignore a DNR anyway because it goes against their beliefs.
Just reminds me that if you want to die at you, you have to plan for it. If you don't plan, you will die in a hospital.
My DH had done all the legal paperwork including a DNR before he got too bad. About a month ago he developed aspiration pneumonia and I had to tell them to not treat it. They had to ask "are you sure" and said "yes" was the hardest thing I have ever had to do (my inner voice was saying "YES!!" I want to treat it and also turn back the hands of time so that he is his old self again!!) Later the staff told me I did the right thing, that treating him with a breathing tube, etc. would have been more cruel and painful than just letting him go. Looking back on it, I think it takes a lot of courage by loved ones to do, but it is the most compassionate and selfless act we can do for our loved ones. It is hard making such a huge decision on the behalf of another person. But it is the right thing to do in my opinion. Strength and wisdom be with you...
Further explanation to help folks understand things from a medical point of view.
In the cases of MotherT and Shannon the situation was a decline in health but BEFORE cardiac arrest had happened. Because the person is not 'dead', there is time to explore options and make an informed decision. The "DNR" paper is not a legal factor at this time. Deciding what treatments to give or withhold (before cardiac arrest) would be covered by the DPOA for healthcare or other advance directives. (or having the patient state what they want at the time)
This is managed by having long "what if" conversations between the patient and the holder of the POA. The discussion is difficult, making the (right?) choice is gut wrenching!
However IF you have discussed it thoroughly then when you state WHAT THAT PERSON WANTED it can take some of the burden off of you. You can defend the choice by saying "it was not my decision, I am only stating what they wanted" (again not always this easy)
Also as noted above - Emergency docs and RNs generally have no experience with LTC. Before I went to nursing school I worked as a CNA in a NH for a year. I am happy I did because I could understand LTC when those patients came in. I have only met one other emergency RN who had ever worked in a LTC setting. Emergency medicine folks do not always get what a DNR is or why it was written.
Emergency Dr, RN, Paramedic, EMT they will always begin CPR and resuscitation first and ask questions later. They will not instinctively look for a DNR (or other advance directive paperwork) and because of their emergency training they may (intentionally?) disregard it. As illustrated by Ocallie above.
Recent case review I attended - 88 y/o female, Hx of diabetes, dialysis and at least one leg amputation. Paramedics called because she was partially unconscious with an extremely slow heartbeat. (nearly stopped) The slow heartbeat was caused by very high potassium in her blood. They transported and treated her (with pacemakers and other medications) and she was eventually sent home again. However when I asked if at any time during this case did anybody look for or inquire about any DNRs? DPOAs? Advance directives? The emergency folks looked at me as if I was suggesting that somebody should look at her last tax return(!) Nobody ever thought about it or even gave it a moment of consideration.
The lesson here are: To PRE-plan as much as you can (we all know how AD ends) You cant talk about it enough. Include family, friends? clergy? (shifting the decision emotionally to the AD person can possibly help you cope) Be prepared to guide the care that is delivered and beware of emergency providers who may not follow your LTC plan.
m-mman, you are so right. Having the advanced directive was SO helpful when explaining to his family why we were not treating. It was really not my decision, it was his. It made a difficult decision much easier knowing that is what he wanted - it wasn't just me guessing. Pre-plan, pre-plan, pre-plan!! You will be happy you did in the end. We had also arranged for his cremation and everything in advance. Which I cannot stress was so important when the time came. Just a call to the funeral home and everything was taken care of. No trying to find the right one, dealing with the price, etc. That is something you DON'T need to be making decisions about after the fact. If you are trying to "spend down" for Medicaid - funeral costs are something that is allowed in your spend down... got mine arranged at the same time.