Basic DNR guidance needed

My husband and I care for my mother who after 8 years is well into the final stage of Alzheimer’s. She was changed to “Hospice” status this fall - though this sort of hospice can go on for even a few years. You never know when God’s time i, and we don’t try to anticipate it but take one day at a time. This status means we have a lot of involvement and help, home care aides and nurses coming our for visits and aides. She just left for a 5 day respite stay (our first) at a local nursing home, and they want me to fill out their own DNR. I believe my brother, executor, filled one out for the hospice and checked off everything for the DNR. I didn’t realize that til today, and want to reconsider this, and I do not expect him or my other sibs to have a disagreement with changing it. At any rate I have to fill one out today or tomorrow, and I am not comfortable with withholding liquids or food. It seems wrong.

She is very skinny because feeding her has long been a problem. Since hospice, the advice has been don’t try to give her more food and water than she wants - and that’s very little. She has become frighteningly skinny, It is hard to give her water and we are working with hospice on various ways to try and will continue to.

So, the DNR form asks about whether or not to allow intravenous water and food. What about that? Apparently this can be considered “extraordinary” means of resuscitation. Yet - it’s food and water! We are not going to go with lung machine etc., but the food and water thing has me concerned. She is never going to get better, only worse, but I do not want her last days/months/years to be suffering ones, Aren’t intravenous feedings/water necessary in order to relieve suffering?? It seems it might be.:confused:

I tried to find these answers in old forum posts and the DNR ones seem to be focused on the lung machine sort of things, the sort of extra interventions we would not do anyway. Yes, she is in the slow process of dying but I do not want to hurry it, and certainly not make it less comfortable for her.

So my question is particularly about intravenous food and water.

Hospice seems to say this not wanting more than a bite of food now and then is okay, and a normal part of the dying process, but then i wonder if there is a euthanasia influence in their professional training that influences what they say?

Is there a website that discusses these things. I do not want the DNR to be a sort of euthanasia.

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ncbcenter.org/files/9414/6917/1584/MSOB094_Going_Too_Far_with_DNR.pdf

PS: feel free to contact them (they are the experts recommended by CA staff too).

Number is at bottom of page

ncbcenter.org/

I would second talking to an expert at the NCBC.

I went through a very difficult few days when my 96 year old aunt passed, having to make several of these end of life decisions. I was getting slightly different advice from the nursing home nurse, hospice, her physician, the hospital social worker. They were all good, well-intentioned people.

Of course, these decisions about inserting feeding tubes, IV feeding and hydration, never came until the last several decades. Medical science has delayed the dying process, for better and, perhaps, for worse.

DNR has nothing to do with ANH (artificial nutrition & hydration. It only deals with “Do Not Resuscitate” and it is a doctor’s order. .Does your mother have) a Living Will? That would deal more with ANH. Or a Physician Orders for Life-Sustaining Treatment (POLST) is a process that transfers patients’ wishes for care into medical orders. The documents, which outline desired care, follow patients across care settings.

ANH is a tough call because it might actually cause more suffering depending on the patient. Is her regular Dr still involved? One you know and trust and who knows her and what she might want or not want?

My mom had a G-tube for the last 4 years of her life because she had difficulty swallowing. She was in a nursing home but not on hospice till about the 3rd year or so. She was DNR and her death was from a heart attack, but I didn’t find that out until her doctor got up to the hospital awhile after she passed. She had had vomiting and symptoms at the nursing home but when I got to her in the ER she was awake, calm, and talking to me in the morning, then she drifted off to sleep. I thought she was just napping, but later it became apparent she was in a coma. She died that evening. So in our case it wasn’t dramatic, just a slow ebbing of life signs; I prayed the Rosary at her bedside as she took her last breaths.

If she had gone into something dramatic like V-fib I guess that would’ve been when the DNR thing would’ve applied, and they wouldn’t have tried to defibrillate.

Even right afterwards I was grateful to God that it had been realitively peaceful for her after the initial symptoms. When she was awake she didn’t appear to be in pain. And I feel like the angels just came and gently carried her to God at the end. We don’t know how it will go but I do understand how difficult it is to make these decisions. I’m an only child so I didn’t have to consult siblings - though I didn’t have much support either.

Anyway my heart goes out to you knowing how difficult this is to deal with. I hope you will find a really helpful and holy priest if you need to talk to someone, because at the time I had to decide whether to have the G-tube for my mom, I was blessed with such a priest who was very pro-life and took time out of his busy day to help me. The feeding and hydration gave my mom almost four more years and when she became more coherent for awhile I was able to explain to her the decision I’d had to make. I was a bit apprehensive, as she wasn’t Catholic and had always been the “I don’t want to be a burden” type. But she thanked me and said she was glad I’d had them put the feeding tube in.

Thank you for the NCB Center website. I see their number on their webpage and will call there Monday. Mom will be back home by then but the information I need is not imminent for this week or anything. Talking to someone who has Catholic thought and medical understanding is exactly what I need.

Thank you also for the suggestion to call her doctor - she has a new doctor now with the hospice, but her old doctor wants to be kept in the loop, and he is a good man, and practicing Catholic. So yes, I should call him about this!

3Doctors, thanks for sharing that. My poor Mom can’t explain a thing to me, and I have to pretend to understand her, and that’s not easy. A very small percentage of the time she says understandable almost appropriate things and that is always nice. But I do believe in the value of life itself, and I certainly want to make the best decision for how to help her in these last days, however long they are to be. I am looking forward to talking to the NCB people, and to her doctor, which I just decided to do with the help of the replies to this post. She has not seemed/looked good lately and I fear its lack of nutrition and water… [it helps that the hospice people are the experts here, and say all is fine at this time, yet, I want more input].

P.S. I have yet another moral dilemma, but I am going to post in in family Life,since it pertains to that.)

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