Overcoming guilt from NOT ending life support when had the opportunity. Any advice?

My father died at age 84, he had never been in the hospital before as he was born at home.

He was not feeling well, the doctors kept saying it was his diabetes, I didn't concur, he fell out of bed one night, off to the ER he went. Testing showed that he had small cell carcinoma of the lungs, the doctor showed me his ex-rays, it was evident that he was not going to live. I asked the doctor "How long do you think he has, be totally honest" he said "Well, if we do chemo & radiation maybe a year". I just laughed at him and said "Surely you gest".

I instructed the team to not poke and prod him any more, that same day I went to the ladies room and lo and behold they were taking blood from him...I went nuts..threw them all out of the room.

My father died 3 days after the diagnosis. With the information at hand, I believe that I made the best decision for him, that is all we can do...nothing more, don't guilt yourself, it is over, the result cannot be changed.

Sending support your way.

Discuss with her now what she wants going forward.
There is a document called a POLST and it is VERY specific as to the measures that are to be taken if necessary.
Discuss with her when she wants to discontinue dialysis, tube feeding and any other measure that is to be taken.
Don't feel guilty it is a waste of emotion. And part of this is the Doctors fault..they do not want to admit "failure" and a death is a failure.

I’m so sorry you’re going through this, I wouldn’t wish it on anyone. My mom slept for 3 weeks after her huge stroke, never any life support other than feeding and hydration. The whole time we had doctors in our ears telling us there was great hope of recovery. That was the basis for approving a feeding tube. She woke up, fully mentally aware, but physically completely devastated. She was transferred to long term rehab and had endless hours of therapy. The therapists often told us they’d not seen someone try so hard as she did, yet there was no progress and no recovery. She lived in a body that couldn’t do anything, and I really mean nothing for four years until she died. I’ll never know how she survived it mentally. I hope your mom can progress and recover physical skills, many people can. But where you’re concerned please reassure yourself that you did the best decision making you could with the info you were given, you were doing exactly what’s asked of us in advocating for your mom. And that’s all we can do, she’s blessed to have you

First of all there is no such thing as a "routine" cardiac catheterization--it is very invasive and has risk of bleeding. There is no point dwelling on "what if" because the past is done, and at the time you did what you thought was the best--try to focus what lies ahead of you. Unfortunately advanced directives do not spell out all the shades of gray; there are far too many variables that can happen in life.

Get POA established, if not already. Do this while she is cognizant; otherwise it will be a court-appointed guardian. Also get the estate in order. Discuss advanced directives and if she is cognizant have her sign one. Does she have a Will? Consider per-arranged funeral. Also get her bank account shared with POA as she may not be able to manage her affairs later. All of this is to avoid probate after she dies. See an eldercare attorney, and do this as fast as possible.

Squatch, my father had a somewhat similar situation; I'd like to share with you how he overcame it, lived another 15 years and died at 99.5 years of age.

After my mother, then my sister died w/i 1.5 years of each other, Dad threw himself into his work at home, eventually collapsing and ending up in ICU.  He had to be intubated, was trached and remained so for about another 6 months.  He went through 2 bouts of MRSA, then VRSA, was in an induced coma for about 3 weeks.   

A pulmonary doctor and an ICU nurse emphatically stated he would not survive.   I knew my father had a will to live; that's just his nature.    So I mustered the troops, made sure he had visitors, including me, studied up on all the conditions he had, and made sure to discuss issues with the positive doctors. 

Eventually he went from ICU to the general floor to a long term care hospital, devolved when he got MRSA again, back to the general floor (or maybe ICU - I don't remember), up to a new long term care hospital, then rehab, then home with me at my sister's house.

We had home rehab; best and most professional service I've ever had.   By then he had been decannulated but still was dysphagic, and had nothing but liquid nutrition fed through a PEG tube.   

He did become discouraged; I used music and exercise therapy and again encouraged his friends from church to visit.    The PEG tube was removed about 3 months after he came home (at my sister's house), in large part b/c I was politely aggressive and supported the issue of speech therapy, including through (Shaker) exercises.   

His famous last words at that point were that he wanted a Big Mac!    Junk food, but after 10 months of nothing but liquids, I thought he was entitled to something he really wanted.

While together at my sister's house, we worked on projects - assembling kit furniture, walking, visiting, etc.   

He still had some issues, and eventually a CVA and stroke, but he always came back, lived several more years, and just passed last year, 6 months short of 100 years of age.

It CAN be done; the issues are so much the medical situations, positive outlook, family and friend's support, and good care.

I don't discard any of the advice you've been given; I just wanted to share that with determination, a lot is possible.   And my father had determination. I suspect your mother has as well, so I'd focus on mental and emotional stimulation and integrating previous activities into her life so it's not all focused on medical issues.   And don't forget her favorite music. 

Pets help as well; they're great therapy.

I extend to you my best wishes and support for this challenging venture, and hope that you turn the regrets into cherished memories and pride of what can be accomplished.

Bon chance!

My sweet daddy had Parkinson's. He tried twice to take his own life. The second time, mother called ME although they lived with brother. I sat and held my dad's hand as he wept and begged ME to 'take him out of this misery'.

I didn't, but I did think about it. He lived another year or so--I just remember how painful it was b/c I wanted him to be taken home....I just didn't know how I could do this......in the end, with Hospice, I would cry as I gave him as much morphine as he could swallow.

He did die peacefully, but not after suffering so much.

I feel your pain and your guilt. We just don't know what to do....I hope your mother has a return to health that is good for her..if that is what she wants.

My heart aches for anyone who has to go through this.

Author Katy Butler, a former medical reporter for the SF Chronicle, wrote about spending weeks as an observer in an major medical center's ICU. She said that years passed before she realized she had witnessed an acceleration in the erasure of that "once bright line" between living and dying.

@Squatch, you and your brothers were in a tough spot. There's almost always another treatment, another shot at saving a patient's life. It can be very hard to know when to say "enough".

Your mother is blessed to have loving children. I hope that you can let go of guilt and find peace.

I could never be a party to terminating a life that still owned it’s mind.
I would always feel as though that person, that human being, would have deserved it’s say.
Someone whom I dearly loved was “allowed” to accept a “death with dignity”. I was denied access to the person, and didn’t realize until some time after the death had taken place, that I might have been able to provide a positive resource to allow the person to decide differently than a legal guardian had decided.

I feel guilty that I allowed that person to be separated from me. In fact, the guilt is terrible. The one gift that came from the loss is my now very firm sense that if the mind desires to be present, it should be allowed it’s time of dwelling in the body.

In light of my experience, you did no wrong.

Thanks all. I think we were waiting for a "sign," whether that be good or bad. But we didn't get one. Maybe her waking up was a sign. We were so focused on neurological function, at least I didn't realize all these other physical things would occur. My worst fear was her laying in a nursing home for years. I looks as if that has a good chance of coming true. Time will tell.

She spend years taking care of my Dad who had dementia. He died a little over a year ago and I feel like Mom was finally coming out of that fog and being herself again. Then this. It's a bad deal.

Peace to all.

Please talk to someone about how you're feeling... surely the hospital has a social worker on staff, or a pastor or chaplain from the area that does hospital visits. Talking to an objective stranger who has seen others go through the same thing can be enormously liberating. You saw signs of life in mom so naturally you assumed the best. I'm sure most people would have done the same.

Try to stay hopeful... mom will need you to be positive and brave for her because I'm sure she's scared as she adjusts to the 'new normal.'

Just want you gently remind you that no one can know an outcome for certain. 75 is young in my family and I think I would have made the same decision as you, were it my own mother who at that age was incredibly active and healthy, too. From your info she seems to be making progress, very tiny progress, but progress nonetheless. Time will tell...please try not to feel guilty. May you receive peace in your heart no matter what happens.

So hard to know what to do. I agree with everyone else who posted. Just want to let you know that we care and understand that it’s near impossible for you to know what to do in these circumstances. Hugs!

I don't think you had much of a choice here, really. You're damned if you do and damned if you don't, if you think about it. If you had pulled the plug, you'd have been feeling guilty about 'doing it too soon.' Now that you waited, you're guilty for having 'waited too long'. See what I mean? End of life decisions are dreadful, no matter WHAT!! You did what you thought was right and you were acting in your mother's best interest; no malice was involved.

Now, if God is ready for her to join Him soon, she will pass. Nothing you do or don't do will prevent that from happening (I believe). So let the chips fall where they may. You have given your mother another chance at life. See how it all plays out.

Wishing you all the best.

Oh, Squatch; this is so hard.

Please don't beat yourself up and done the "woulda, coulda, shoulda" over this. You took the best advise offered by the docs; THEY are the experts, not you guys.

My mom was always adamant about not wanting to live past her expiration date. She had a stroke and broke a hip and ended up in a NH. She seemed content. Then, suddenly, she needed a pacemaker.

I was fairly certain that she wouldn't have wanted to live like this, if she'd had to make the decision when she was 70. But now she was nearly 90 and she had appointed all three of us "kids" as medical proxies.

Brother, who was financial POA, decided to ask mom whether she wanted the pacemaker and after a couple of minutes thought she said "yes, yes, do it".

I was pretty shocked. The desire to live in the moment is very strong.

Please, be at peace with your very painful decision. I hope mom recovers enough for you to have a meaningful conversation about these issues.

((((((Hugs))))))))

Yes Squatch.

My mom had not been taking proper care of herself. A kidney infection turned into sepsis which led to a heart attack and an extremely long hospital stay. The first week was touch and go. At one point the doctor called and said we should all gather. We thought it was going to be the end. But then she pulled through and after a six week stay in hospital and another six week stay in a rehab facility followed by a trial home health care period she eventually ended up being transitioned into a nursing home.

At one point during her hospital stay she had said she wished to die. And it wasn't till her death a year later that going through her personal effects I found her living will which had stated her wishes regarding end of life care. If I had only looked at it during that first stay at the hospital I would have probably advised the doctors to just let her go. I know my mom's last year of life she was quite depressed and I feel I let her down.

Which leads me to say to everyone, make sure that you have all your affairs in order so that your final wishes are known to your immediate family.