The DNR decision?

JB how kind of you to share and how strong you are to be able to share at this difficult time. xxxx Far far stronger than I could ever be. You are one brave person xxxxx

Thanks guys really appreciate the support.

Jb: So sorry for your loss.

JB-so sorry to hear about your loss. I'm glad you find strength in knowing your mom is no longer suffering. I hope this helps Tiny as well when/if your dad is in the same boat.

JB - my condolences on the passing of your mother.There comes a time when they wind down too far to come back up again. Good luck with the crazy family funeral politics. I expect to have to deal with this in the next few months as mother has been put on hospice. I am sure you are relieved, but you also have shock and pain from your loss. (((((((hugs)))))

Tinyblu, my mom passed away this morning. I was the first to post on this some days back. Now, even in my pain and at the same time relief, I can see in my case the DNR was the right call. She was quite ill and the last weeks have been the hardest on me watching her labor and suffer so with her breathing. Couldn't see them trying to bring her back in sick and aged (86) condition. No more of that....absent from the body, present with the Lord. She's probably having a great time and now sees she never need worry about death. Now off to deal with crazy family funeral politics, but wanted to share that with you.

I am facing this same sort of decision. My mom has no AD, no DNR, will is not up to date...but I am her executor and oldest daughter...and I live out of state. My mom is 91 and still in OK health so nothing is imminent...but then anything could happen and she could be gone tomorrow. In the past she has asked that "if anything happens to me...do everything possible to keep me alive." At our last conversation she still feels that way. She also talks about updating her will but hasn't done it, won't tell us who her lawyer is...don't know the doctor either. I appreciate how much of a huge decision this is for you - I think if it were my mom, after talking to the doctors and getting their perspectives, I'd put the DNR in place. It seems to me to be the right thing to do. Put it in God's hands as to what happens after that. Many ((((HUGS)))) - I know it's not easy.

Tinyblu: I agree that it is hard. I had to make the palliative care decision for my mother. Do the best you can and don't beat yourself up over it.

I am SOOO happy to have this "family" in light of my DNA-sharers.

Daddy never liked to talk about anything death related. He always thought he was invincible - hence his decision to continue smoking despite the doctor's MANY warnings.

I've been a ball of emotions today. Seeing Dad struggle with the oxygen tank really confirmed his frailty to HIM and me. He looks frustrated about the entire thing and I feel so guilty every time I leave him. Then I feel resentful for being placed in a position of having to feel guilty for needing (and wanting) to go to work.

I have decided to simply wait a while. A decision doesn't need to be made TOMORROW, and things are too stressful to even deal with a decision that major right now.

I found comfort in a book "Can We Talk About Something More Pleasant" by Roz Chast. It is a HILARIOUS depiction of the author's experiences while taking care of her aging parents. It literally got me through the day. I needed to laugh. It's an easy read!!!

When we were bouncing in and out of the hospital with our mom, we felt barraged at every point from the ER to the daily visits by "hospitalists", "social workers", "case workers" etc. all wanting to know if we had a DNR, and if not would we like to schedule a meeting with "Palliative Care". Without malice toward any specific person, we were mostly cynical of everyone except the nurses who provided mom's day to day care. We called it the "doctor du jour", where a different MD would visit each day.. none had bothered to read her medical history, but all of them were certain that her death was imminent and that a DNR was of crucial importance. Twice she fell asleep for 2 or 3 days in a row and was non-responsive. All vitals strong. One doc told me that she had suffered a brain "event" and she'd been deprived of oxygen, and that 99.9% of such patients do not regain consciousness. 15 minutes later she was awake and eating. The same thing happened again. All of which is to say ... YOU know your dad better than anyone. Don't allow Medicare-funded doctors and 'case workers' to force you into agreeing to a DNR. Tell them to back off and you'll let them know when you need them. They do not have a choice but to do so.

Having said that, a DNR can be defined as narrow or broad as you wish, at least in NJ. In my mother's case, we decided that we wanted intervention with a bipap if she was struggling to breathe, but if her heart failed and she had no pulse we did not want them intubating, shocking, or even doing compressions. We finally did agree to a meeting with Palliative care, only to learn that medicare and the insuracne companies are very involved in what qualifies as palliative and hospice. No wonder we were being pushed into one of those categories! We said no thanks to those people as well. When she was released from hospital into rehab, we (finally) realized that we could demand the same level of monitoring and preventative care for her that she was getting in the hospital. That was a revelation, as prior to that we were told that rehab and long term care are just "reactive" - i.e., they'll only treat something if it becomes a problem. My advice is to ask a lot of questions. Trust no one whose livelihood depends on the insurance industry. For now at least, they can't legally force you to do anything you don't want to do. So take your time if you have that luxury. When it's time for DNR you'll know, believe me.

We went through this decision 2 months ago for my mom. Like others have said, paper or no paper it's an awful position to be in and no matter what the circumstances, you still question the decision, even if in your heart you know you made the right one. So expect that if you do make the decision. Yes it comes down to quality vs quantity of life and real living vs just surviving. We will be here for you throughout your process and after. Hugs!!

All these are such good answers. Its a hard decision to make, and a message to us, to make that decision in a living will and health care proxy now so our children will not have to. It isn't fair parents leave it to us, but most of them do.
We made our decision of DNR and no life extending measures for Mom when she went into the NH. She's 101, and the staff suggested we do so as anything like that would prolong her suffering and CPR would break her bones she is so fragile. As the cancer and dementia progress you will know what will be best for your Dad. God has a way of giving us a message if you leave it in his hands. (((((hugs)))))))

Tinyblu, so sorry you're having to going through this and face these rotten decisions. I hope you'll soon get past any feelings of guilt or feeling like you've not done your best for your father. This is simply how the end of life should work, and it's often unfortunate that we humans step in where we shouldn't and prolong what's meant to happen, making our loved ones endure more than any of us would wish. The DNR is really a very backwards document when you think about it, it should be the opposite, some kind of "do you want to unnaturally prolong life by artificial means past the point when it should reasonably end?" document. Anyway, I wish you peace in the days ahead, and comfort in knowing that you've provided all you can for your dad.

Tinyblu, your father's MD is the one who makes out the MOLST with the patient and your help. MOLST=medical orders for life sustaining treatment. It will ask if you want a respirator, a pacemaker, IV fluids, antibiotics, CPR, surgery or if you want to go to the ER or not. I don't know any elder who wants to be artificially kept alive, hooked up to machines and stuck in a bed. Not one of them. It is not about playing God at all, no, it is about letting God decide instead of the doctors.

Did you and Dad not ever have that "I don't want to ever live like that" discussion? You know, when we learn someone had to make these kind of decisions. Was it not ever part of your conversation over the years. When my Mom was in the hospital I fortunately knew exactly what she wanted. She and I, along with my Dad, had had discussions about DNR's, living on life support, etc. just over the course of years in conversations. I didn't want to sign the DNR but I knew that was exactly what she wanted. I wanted to let them intubate her to help her breathe, but she had been very clear about that as well. Here I was, no husband or children, no siblings. Once my Mom passed my family was almost completely gone and, left to me--selfish me---I would have done anything to keep Mom with me. But I didn't feel I had the right so I did for her what I had heard her talk about over the years and let her go. As for what others think.....DON'T TELL THEM about the DNR. If you think anyone will give you crap about it just don't tell them. It's none of their business anyway. You're in a tough place but you will find your way through. Sit and be still. You'll know what to do.

This thread reminded me of my MIL in her last month--couldn't sleep, all the meds in the world didn't work and all night "Lord, have mercy, I want to die." She asked to be moved from our house to her son's in a metro area with high smog because she felt it would help her go. Three weeks on hospice, and she went peacefully early one morning. Ironically, I was the one with her at the time.
My husband pulled out a feeding tube a week before he passed; he had watched his brother go in spite of a breathing tube and he told me no way for that. About six months earlier, when it was becoming obvious that his lymphoma was no longer responding to treatment, "God gives a lot of choices, but this is not one of them." My pastor tells of one of our people who was begging to go; he told he it was OK, and she slipped away. Her daughter has never forgiven him. I often think at funerals that this is true reality; the question is not if, but when and how.

Based on what you know of your father, choose the DNR option which you think he would have chosen. Then tell yourself that you did right by your father, picking the option he would have picked, and LET IT GO. If anyone challenges you later, inform them that you picked the option he would have picked. If they persist, ask why they weren't there by your side when you and your father needed them. Peace and blessings to you.

I can only say, I haven't actually done this yet, but I will make my wishes about end of life known to my daughter. There is me, my husband, and our daughter. All relatives and friends have moved 'down south', retired, don't keep in contact, have their OWN burdens to bear. There isn't going to be a big weeping Waltons-size family holding a riotous wake. I don't want anyone in the position of fretting over ME, one foot in the grave, the other on a banana peel, 'should we keep her alive?' - what FOR? Let me go when my time comes, let nature take its course, I'm ready. I want only to go out pain-free, or as close as it comes (god forbid doctors won't be allowed to hand out painkillers to the dying, since so many drooling junkies are abusing them to get sheet-faced - the CDC recommends a big ibuprofen and positive thinkin', now, no kidding!).

There, with out exception comes a time in a persons/ or animals life that sense of mental reason and a desire to continue physical agony, mental helplines becomes a blessing. Often they arrive at this point with Alzheimer's before they convey their ability to reason/convey their wishes to their love one care giver. When God calls them to His eternal home let them go to rest . Don't let them continue suffering and humiliation

Tinyblu your concerns are valid and the struggle with this decision is important for you. I have been where you are in this decision making process. I am an only child and had a father with much the same situation.

The first answer I found was in a review of our life as I knew it. There are other beliefs or conversations that will give you a clue to what your father would want. This most important decision needs to be one which you are comfortable he would make. An example would be the conversations you were allowed to hear when a grandparent was in a final illness. Since you might not have been available for those conversations, allow yourself to look back over your life and objectively realize information from other conversations. While you were living at home or upon a visit were there conversations surrounding medical care and how he would approach them at that time.

This decision is not one which can be made in a couple of hours rather it will take some time to find an answer you are comfortable with. You mentioned in your inquire a small piece about 'when this mass rears it's ugly head'. This gives way to is there time for you to have a conversation with him? If so this would be an excellent time for that conversation. This may not be conversation you are comfortable with. A person who can guide you through a conversation and help with the other feelings you are having right now is a Hospice Counselor.

The Hospice Counselor is specially trained for this kind of decision making. You will have some insight when the conversation is over that will help with this journey. All of your feeling are valid and require you to work through each one.

This difficult answer possibly the most important for decision you will make is one you will question up to the end. Allow yourself to be human and work through all of the answers you have. It is OK to be angry, hurt, sad and fearful at the same time. Please know that many people are your friends and co-decision makers. All have found a way to understand and more on passed this decision.

I'm so sorry you've been doing all this alone for so long; I know exactly how much of an emotional and physical burden that is as I did it for over 10 years. This is the only question you need to ask yourself. What is his quality of life? Can he function, does he communicate, does he enjoy life or have his physical and mental problems made him, more or less, simply a deteriorating body lying in a bed, unaware with nothing to give him pleasure. If any quality of life is gone, you have your answer. You can also ask yourself, if you were in his shoes, what would you want done. Would you want to linger or would you want to pass on? Hope this helps!

Golden - I realize a feeding tube can complicate the process of passing. I went through the full hospice process with my dad three years ago. I am referring to in terms of an AD - something serious has happen, what can be done when the outcome isn't identified. - mom is found unconscious and isn't coming around - possible diabetic coma - no feeding while you're waiting it out?

These are always hard decisions to make and even when you make what you think is the right decision at the time its only natural to second guess yourself and wonder if it was.

My Mom did have advance directives but when she suddenly became gravely ill and was in the hospital it still turned into a chaotic mess where I was pretty much on my own without my siblings and had to make that final decision. I always wonder about the what ifs but I know my Mom was unhappy and ready to be with her other loved ones in heaven and thats what I have to think about during those sad moments when I am missing her.

My Father was in hospital, for aspiration pneumonia, for the third time, and near the end stage of a very debilitating disease, and the decision to start and continue with treatment was presented to the family, my Mom, and my 5 siblings. Everyone agreed to comfort measures only, which he was already on, but me. I simply was not ready to let go him go, without trying antibiotics one more time, despite his body already shutting down, and him having no bowel tone, no BM's for nearly 2 weeks. But because of me, antibiotics were started, and it was the Dr's though that it wouldn't hurt him or prolong his life, if indeed his body had shut down beyond return. Even though he did die a few days later, its still (12 years) running through my head if I caused him more harm than good, even though in my heart I know that it didn't. But mainly what I want to say, is that it is So important to have these forms and decisions decided I Advance whenever possible. That wasn't the case in our situation, as our Mom refused to sign them, she was unable to make those decisions either, based on her religious convictions, and her Love for him. Later, in the decisions for her own DNR, and advanced directive forms, well we had those conversations and the forms were completed. It's all such a personal and difficult decision, but the more knowledge you have, and decisions made, the better you will feel.

By the way Tiny you do NOT have to make this decision. You have the right to say I revoke my father POA for health (if you are one) and if not just say I am not making this decision. No-one can force this decision on you and you clearly don't want to make it so my advice is follow your heart and don't be pushed. Call the family, tell them that you will not make this decision....you don't have to have a reason. That you do not want to is enough.

Veronica you make really good points and I am sorry if I misled people I know I didn't sign his death warrant but I can't stop what it feels like. In my father's case he was in the downward spiral of terminal cancer and would have died with or without the morphine eventually. I hastened his death by signing the ok for the morphine pump and that is my guilt to deal with, even though I know the alternatives would have meant a prolonged and painful death it doesn't alter the way I feel

Nowadays doctors make this decision (and IMHO always should have because they UNDERSTAND and are without the same emotional ties that familial members have, but litigation being what it is made that difficult back in the day)

A DNR is exactly what it says on the tin. It is used when resuscitation is required i.e. you have stopped breathing and it usually covers all events of stopped breathing unlike an advanced directive where you can be selective.

I would love to put away the guilt but after 18 years I suspect it isn't gonna go any time soon

First of all a DNR can be revoked, I have POA and advance directives in place. My husband makes first decision and if unavailable elder daughter.

I was about to undergo surgery for a burst appendix and the anesthesiologist invited me to sign a DNR immediately prior to putting me out. Knowing my survival rate was 20% I declined. he then asked how much I wanted him to do. I told him he could shock me a couple of times and if that failed my husband would make the final decision but I did not want to be revived to a vegetive state.

Having a DNR is not murdering someone or signing a death warrant it is just giving others permission to treat or not treat under certain circumstances.
Please everyone educate yourselves about end of life decisions and find out what your loved one would want.

Jude the use of a morphine pump or any other route of administration does not ensure that death will ensue. of course death may follow as the loved one is probably actively dying. It does relieve the pain and being pain free frequently allows the person to slip away at peace rather than staying alive to fight the pain.

I personally would have no problem administering a prescribed dose of a narcotic even though I knew it could accelerate the dying process. Do you want to watch your loved one screaming in agony, writhing round the bed and yelling for help, often pleading to be given more. I think not.

So put away the guilt all of you who made these decisions, loose the "what ifs" and grieve your loss. You owe it to your loved one to grieve completely so you can go forward with your life

Can I just chime in with my two penn'orth please? I had to make this decision in a slightly different context for my father 18 years ago. Things are different now but I was asked to sign consent to the use of a morphine pump after it was explained to me that the morphine would kill him once he was taking enough of it.

I signed it and for 18 long long years there is not a day goes by when I don't berate myself for killing him. I know the alternative was worse..... watching him die in agony as his lungs filled up and were drained with a drip in which rehydrated him enough for the lungs to fill and be drained - you get the picture I am sure. It hasn't altered the utter self disgust I feel for signing a piece of paper that was effectively his death warrant.

Today this choice is removed and you don't have to have a next of kin sign this but in its place has emerged the DNR and who is going to take responsibility for this decision one wonders. If you don't feel comfortable about taking on this decision then don't would be my advice. Some people can handle it some can't and if you're one of the can't s then living with the decision you make could be heart wrenching.

What I will say is that if someone is old and frail and they do conduct CPR then death is a still a possible result...broken ribs, punctured lung, all possible once bones become brittle. I will never make that decision for another person NEVER. I have however an advanced directive for me and have overridden my children's ability to contest it. I don't want to live now, let alone when I am older and frailer for heavens sake.

Although I can't claim any specific knowledge or research on this issue, I'm guessing that the proliferation of medical malpractice lawsuits, including those alleging wrongful death, had something to do with medical people covering and protecting themselves.

And let's be honest - look at some of the posts here inquiring whether a medmal claim exists because of events that might have been a normal part of dying but the family just wasn't ready or expected more from the medical community that was reasonable.

And now we have prolonged life, often well past the point of tolerance.

Life was simpler before all this legal paperwork became mandatory, the doctors came to the closest family with a treatment plan or a recommendation to stop treatment and we either gave or withheld consent, no need to worry about every possible scenario in advance. We trusted the doc's to do what was right and relied on their knowledge to guide us in our choices. When they wanted to take my father off life support it never occurred to us to question whether more could be done, they wouldn't have asked if there were other options.
From everything I've read modern medicine almost always errs on the side of more intervention and prolonging life, even overriding advance directives if there is any doubt at all. A DNR is not a death sentence, it merely give docs the chance to stop trying beyond what is reasonable.
As for whether or not to talk it over with the family, why do it if you know it will cause debate or discord? You only have to tell them that his disease is incurable and they will try to keep him comfortable, you don't have to outline every decision and treatment plan. Sometimes ignorance is bliss.