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

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.

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))))))))

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.

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!

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.

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.'

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.

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.

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.

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.

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!

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.

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

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.

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.

I'm so very sorry for what you're going through.

I was advised that once they start with life-support it is difficult to reverse the decision. Have you spoken with Mom's physician? 75 is not old. You need to tell whoever is in charge that Mom didn't want any "heroic measures" when her time comes. You can refuse Dialysis! AND you can refuse a feeding tube.

I looked it up when my father went on Dialysis - you can stop that at any point in time and it takes about 2 weeks for the body to die. But it is painless; the body simply shuts down and the person goes to sleep and 'drowns' in it's own fluids.

So when the time came, I helped my father to refuse any more dialysis. At that point in time I also stopped all medications other than for pain and he passed peacefully after 5 days and he was still cognizant until the time of his passing.

There is no "right" answer. We recently stopped treatment (after a surgery) for my MIL, other than to keep her comfortable with pain meds. She died within 3 days. She was 94 and had several long-term illnesses. There was no real future for her, only pain, lots of issues, and unwanted medical treatments. With your mom, however, she does have a future. People's kidneys do come back (mine did). I had to relearn to swallow. I am learning how to walk again (both legs amputated). It is hard, no doubt, but your mom was active and healthy before, so she very well could be again (like me).

You made the best decision you could with the information you were given.

Truth be told, it would hurt just as badly if you had pulled the plug and then continued to wonder "would she have recovered?"

So, going forward it is important right NOW, while her head is clear and if she is able to communicate, to get her signing away on POA, a will, and most importantly a living will with lots and lots of conversation with her about what she does and does not want as far as quality of life, life support, etc. I also suggest recording these conversations on your phone.

Seems you did the right decision at the time. Doctors do not recommend ending life unless there is evidence of brain death. Your mom did not have any indication of brain death. Movement and kidney function will most likely return with lots of support - which she is getting. It takes longer for older bodies to heal and it appears your mom is a little frustrated by the delays. Help her to see all the progress she has already made. Encourage her in doing her physical therapy exercises - do them with her and help with the assisted exercises. Stop second guessing yourself and celebrate the life your mom currently has.

I am an ICU RN.

The only way I see that you should be guilt is if your mother had previously told you that she didn't want life support. At age 75 she is not young or old, but I am a little surprised that the hospital didn't bring up POLST before this procedure. You made the best decisions that you could at that time. As you said, she was 75 and very active and healthy leading into this challenging situation. As you have described, your mom is making progress, albeit slowly, and progress is good. Having suffered a medical crisis at the age of 35 and lived through a prolonged recovery that was measured first in weeks, then months, I became intimately aware of why people going through these medical issues are called "patients." One must be so very patient with oneself as they heal. In taking care of my aging parents, I, too, had to make many difficult decisions for them, when they couldn't. It is natural to be feeling as you do, but life isn't simple, and the answers are usually not obvious. There were a couple times, I would have appreciated a "do-over," and I found that my parents medical dilemmas were not as clear cut like the examples in the information I read to prepare myself for this eventuality. The examples in Being Mortal really didn't speak to what mom and dad and I were contending with. Life is messy and imperfect. Don't second-guess yourself any longer; beating yourself up over this doesn't do you or your mom any good. Do support your mom emotionally. Help her celebrate tiny victories and be positive. Help her work toward those goals of repairing and strengthening, and keep track of them on a calendar. Right now, favorite music, colors, photos of family or favorite places, and distraction are key. Consider all opportunities to keep her moving. When mom couldn't get out of bed, we would play dominos on her tray table; at least she was reaching for each tile (a tiny little sit-up!) Remind her of her progress and that there will be more. Be her best loved one and advocate. As advocate, try to get to core of her wishes concerning advanced life support. But in the meantime, she may surprise you and herself in her recovery. I hope my sharing this helps. Take care.

We do the best we can, with what we are given. It's difficult to know everything and perhaps no one right decision. I struggled with something similar with my LO who now is in end stage dementia on hospice. I really wonder if I did the right thing by saving her years ago. At the time, I did not know it was a progressive brain issue and what would happen to her. I thought I was doing the right thing to save her then. So, as long as I thought it was right, I have to accept that. My heart was in the right place and I had no notice that she had dementia. So, I am peace with it.

When my siblings and I were asked about end of life instructions for our mother, we relied on doctors advice following what was suspected stroke. We went against mothers specific orders... she could be 106 and a vegetable (her word), but she always insisted on being resuscitated because while there is life there is hope. She had previously refused to even discuss an advanced care directive with her long time GP some years before dementia setting in, and then again just before going into permanent care.
Our decision was that there was to be no resuscitation, she was simply to be kept as pain free and comfortable as possible. Treatment comprised oxygen and delivery of pain killers through a drip. Nothing more. Twelve hours later she began responding to physical stimuli and soon woke as good as could be expected for a 93 year old with advanced progressive dementia. Apart from being a little vaguer, there was no obvious residual damage. Since then we have gone through a similar scenario on another two occasions. While our mother might not be experiencing the physical pain of, say, cancer, the turmoil and emotional pain of dementia (she has at least 3 types) is excruciating for her most of the time.
In Australia we are going through extended debate about euthanasia, which you can imagine is passionate and, at times, quite confronting. Advocates only seem to use physical pain to illustrate their support for the legislation, and are horrified when patients overseas are using their own laws to end life for depression, a treatable mental illness. No one seems to consider the dementia patient in their argument. The disease seems to be up there with depression as just mental illness, rather than the insidious disease it is.
If patients are determined to use assisted dying laws to end their life at a time of their own choosing, they have to demonstrate they fully understand the implications of their decision. How can a person with advanced progressive dementia satsfy the medical profession that they know what they are doing? Our mother says she no longer wants to be alive, but at the same time says she does not want to die. Withholding treatment and not resusciating might not be in the same league as assisted dying or euthanasia, but it is equally as confronting, especially when we know what someones wishes were pre dementia. Our mother was certainly anti euthanasia, but we wondercif she would have been so adamant had she really known the horrible existence for which she was destined.
Thank goodness my siblings and I are on the same page. None of us feels any guilt with our decision which has been constant on three occasions. It would have been a calous act to deliberatley bring our mother back to the dark and emotionally painful place in which she continues to exist.
I hope our experience can help you to come to terms with your guilt, Squaatch. There is no right or wrong way to deal with the issue of withdrawing treatment, or continuing treatment despite someones previously stated and well known wishes, or against the best medical advice.

She may just get better. Give it a little more time. You did your best and that's a hard decision to make. Did your Mom ever say before, what she wanted if she were in this situation?

If her mind is sharp discuss it with her and have her make the legal decision if she wants a DNR code. You can’t change what you did but it sounds like it’s not a given she’ll recover. Let her decide where to go from here. It’s nothing against the medical profession but basically they can keep people “ alive” forever and will always offer treatment but who wants that? If you have a good idea what she wants , you can make the decision easier.
my mother is the opposite. She has a DNR but is terrified of death so always says she want resuscitation when they ask her. Right now her health is good for 93 except for vascular dementia and her Afib but she constantly complains about her lot in life( always has) . I hope the next stroke takes her out, if it makes her unable to talk or move around she’ll be completely miserable

Hello Squatch33,
I'm sorry for your burden of guilt and woe.
You made the best decision you could for your mother at that precarious time.
Please try to internalize that everything is not your responsibility, and you can't be expected to have all the answers or know the future.
Clearly you are decent and kind, or you'd not be feeling this way.
I wish you well.
R27

If the doctors had thought that would have been the best route, they would have dished out the information to you in that manner. There has to be more than one doctor involved in her care and the majority of them would have pulled the family aside and directly told you if there was a grim prognosis for quality of life and survival.

Her mind is clear - but a feeding tube - does it hinder her ability to talk? Has she expressed any desire to stop any of the support systems, does she still speak of goals for future, etc? Listen to her desires. You might also ask for a meeting with the doctor(s) to discuss long term prognosis and goals they foresee. All the tubes and stuff may appear bad to you, but the doctors may be able to explain things better.

You need to wrap your head around the fact that you did the best you could do at the time when she had the surgery. It is always easy to think of the what-ifs, but what-ifs are only afterthoughts. Most emergency medical decisions are made in the here and now with only the thought of saving a life in mind. You did what you could to save her life - the same she would have done for you.

Squatch, like many others I want to say that you did the best (and seemingly reasonable to me) thing you could at the time with the information you had. And with the best of intentions for your mom. It's easy to second guess things in hindsight. Focus on those good intentions and consider what you can do now to ease things for your mom going forward.

Create and discuss an Advance Directive if you haven't already. It's true that decisions about transitioning to comfort and focusing on quality of life (which I prefer to the phrase "pulling the plug") are rarely black and white. Knowing what's important to your mom for an acceptable quality of life can help guide decisions when they need to be made.

A POLST form can help ensure that CPR would not be done in the future if that's what your mom wants. This should be part of the Advance Directive conversation and then involve the physician to clarify any questions about likelihood of a "successful" resuscitation in her current state of health. The physician also needs to sign the form as it is a medical order.

I think it's also important to keep in mind that "allowing natural death" by not intervening with aggressive measures is not the same as "aid in dying" (historically called assisted suicide) which allows a person who has full capacity to understand their decision to then choose to take something to hasten the dying process. Allowing natural death is simply letting nature take its course when the body is no longer able to sustain life on its own.

My best to you and your mom. She clearly has thoughtful and caring support from her family which is such a gift to her.

Sounds as if your Mother made the choice FOR you.
Maybe SHE had a decision point in that interim time, while she was on life support? Perhaps she made an informed decision ?

I think that dialysis was another move that was one where hospice and palliative care could have easily been called in, and your mother put in a place where she did not suffer until she passed. Is she able now to communicate her wishes? If so, she has the right to refuse further dialysis. That will likely (but not certainly) put her in a place for hospice to be called in. Please ask now for a palliative care consult. I am afraid at some point our elders are used as vending machines for the system.
You know your Mom's wishes and being in certain possession of that information, with your brother and you in support of one another, and hopefully with your Mom able to participate, you will be able to make decisions.
HOWEVER, and this I think may be the REAL problem you are up against; this sounds like serious malpractice in a well patient in for a procedure, and is almost certainly a suit that would be taken in malpractice, as your Mom will need care the remainder of her life. My feeling is that you should see a GOOD malpractice attorney at once; not one of the ambulance chasing ad-producers, but one recommended by other lawyers you may know who specialize in other areas of the law.
I am so sorry for all you are going through.

It sounds like your mom is still competent to make her own decisions as long as she's awake. Here are some practical things you can do at this point:

Ask mom if she wants to complete Advanced Directives/Living Will
(which can include VERY specific details on what future heroic measures she wants---ours rules out feeding tubes and respirators.) She will decide what she wants. Make sure that her physicians, the local hospital, the facility she's in all get copies of those completed documents. Hospital or facility social workers can help you get the appropriate documents. Our state department of health also had standard forms on their website.

Also she should complete a Power of Attorney for Health Care, a HIPAA authorization to receive and discuss medical records with you, and a General Durable Power of Attorney (for finances) that has provisions for a successor to take over decisions if she becomes incompetent. My parent's doctors had to certify that they were no longer competent to make their own decisions to activate those documents, but that can take place within a matter of a day if the physicians are familiar with the situation. I carried a copy of these documents with me at all times when dealing with medical personnel. Whenever I met a new provider, a social worker, a nurse...I always announced that I have Health Care Power of Attorney and HIPAA authorization to receive medical information for my parents. Given that, I was not given the run around. The documents are usually drawn up by an attorney but your state department of health may have prototypes or you may find legal document prototypes on the internet. Medical providers sometimes have their own HIPAA form.

The physicians can also determine if your mom is in Medicare hospice status, where Medicare covers all medical bills and offers additional services. That was invaluable at the end of my dad's life. She may outlive the Medicare hospice order and that can be renewed multiple times.

Another document my dad signed in the hospital was a "DNR-Do not resuscitate order," after hearing from the hospitalist what realistically happens to elders when CPR is applied. He was issued a permanent plastic bracelet indicating a DNR order was in place (helpful if paramedics or ER involved.)

Consider having an attorney draw up a Revocable Living Trust," which is the vehicle that will hold any property transferred there. If you are named as Trustee and POA, these steps make financial transactions and decisions much easier in the future. Property not placed in a Revocable Living Trust or other trust will go through state probate court. However, if the mom does not have any significant property, a trust isn't necessary.