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

Squatch, as you said, second-guessing does no good. The awful conundrum is that if you choose to continue life — the right or wrong aspects will be shown to you whereas if you let someone die — then you’ll never know. If you could see into the future after pulling the plug, and know that she’d mentally cognizant and sharp, but needing rehab and a feeding tube had you not pulled the plug and let her die — well, this guilt is much better than that guilt, no?

As someone who is ADAMANT that I’m not to be kept alive if it’s likely I’ll be on life support for good, my perspective is clear: If I can think and speak perfectly upon coming off of support and there is hope that I can recover my basic functions — give me a chance at life because I’ll fight my way back. But if my mind will be shot — if I can’t speak, have brain damage, or am otherwise no longer what makes me “ME”— pull the damn plug and overdose me on something just to make sure I go. To me, your mom’s condition, at least the way you describe it, is much closer to the first situation than the latter.

So for whatever it’s worth — I think you made the RIGHT decision this time.

OP here. Thanks so much for all these helpful replies. Mom is doing well FTMP. She is able to drink and eat level 2 foods now, which was a great Christmas present.

She has told my brother and I that we should have "let her go." I was expecting to hear this. She doesn't seem to dwell on it and is actually pretty upbeat and in good spirits most of the time. She seems focused on getting better, and she is (yes, painfully slow it seems, but day by day.)

She is very sharp minded and quick witted. The nurses love her. To be clear, I'm glad she's still with us. I just hope she has a quality of life worth living. It's too early to know yet.

Dear Squatch,
Yes, we're still going through the doubts and second-guessing -- two years later! My husband had a severe stroke 2 years ago this month at age 72. The neurosurgeon indicated that he would not recover functions and would succumb to pneumonia or sepsis within a year, so was giving us the option of stopping the treatments that kept him alive the first two weeks in ICU. The palliative care doctor gave a more balanced prognosis, along with more positive possible scenarios. (Try to find a "palliative care doctor" or at least a chaplain!) I just had to give him the chance for some recovery and some semblance of a satisfying-enough life, but I am still wondering what would have been best. It sounds like your mom has a much better prognosis!
We hoped the feeding tube could be removed at some point. The speech therapist called his eating attempts "recreational eating" which made me mad -- I wanted them to help get him to the point of "nutritional eating." But they were right. Although he can safely swallow with careful supervision, the brain damage prevents him from wanting more than a few bites, if that. All the doctors and the chaplain assured us that it would be ethical and legal to remove the PEG at any time in the future since it is keeping him alive artificially. However, I hope I never have to make that decision again.
He also has expressive aphasia, with unreliable yes and no nods and occasional words that are hard to interpret. We had never completed advance directives. (He had only told me previously that he never wanted to be in a condition where he had to use a urinal, but I couldn't take that seriously! Now he wears diapers.) Be sure to discuss with your mom what she would and would not want to live with, with the caveat that when the time comes she may very well change her mind, and you may again have to use your judgement.
I never expected this status quo to go on so long; I thought he would get much better or worse in the first year. He's basically not eating, walking or talking, and sleeps a lot. But for now, as long as he is medically stable and shows momentary enjoyment, it's still one day at a time.
I think you made the right decision. I hope your mom continues to improve, and has many satisfying years to come. But if not, at least you have given her a chance. My heart goes out to you.

From research I've read and from anecdotes I've heard, what helps the most is if your mom can tell you what she wants. This helps people feel better about difficult decisions because they feel like they are simply carrying out someone's wishes rather than actually making the decision. Take the opportunity with your mom having a clear mind and talk to her about quality of life. At what point, if any, would she not want any additional treatment? What does an unacceptable quality of life look like to her. If you think she wouldn't want to be on life support indefinitely, ask her if she would be willing to be on it--and for how long--if there was X% chance of recovery to a quality of life that would be acceptable to her. The Conversation Project has a website with several tools and guides you can use to have a discussion about this with your mom. You'll never be able to anticipate every possible scenario but the more you can understand about what she would want, the more confident you can feel in the decisions you end up making.

Rehab! Therapy! Sometimes it is a slow, difficult process and sometimes the results end up looking nothing less than miraculous. If Mom is intact cognitively, anything is possible including getting back to her life as it was before a "routine" cardiac catheterization (kind of an oxymoron). Don't give up until she tells you to. And since she is fighting to live, keep giving her lots of reasons to suceed.

I think you made the right decision at the time. I'm 76 and fairly active in all aspects, and I would hope my family would not give up on me so easily. My mother, however, is 98 and has wanted to die for many years now, especially after my stepdad passed 4 years ago. The decision to pull the plug on her would be a no-brainer. If your mother is truly at the end of her life, you will know when to say, "let her go". My mother has bounced back from so many death days to make a full recovery. It can happen to your mother also. Trust your gut.

If she has an advanced directive, use that as your guide. If there isn't one, do the best you can regarding her wishes. DNR?

When faced with a complex situation such as this, I think to myself the following: I made the best decision I could make given the information available to me at the time. Life including end of life decisions is so complex and no one can predict the future. I don't think any of us can be 100 percent sure of another person's feelings on any particular subject. In moving forward if your mother is unable to make decisiods regarding her care, take the medical information presented to you and make the decision by evaluating what the resultant quality of life may be. Please don't beat yourself up. Life is hard enough as it is.

All you can Do now is Let the Doctors do what fgthey can do. Stop beating yoursel fup. My sister is stil doing This because she Pulled the Plug on Mom last Year, Dear..Let it Go. Focus on her Now...xx

BBB2019 is correct... take copies of DNR living will,,, and if she is in a facility... make sure the POLST paper is taped above her bed.. with your phone number, and doctor phone number etc... NO QUESTIONS ASKED..

I was away when LO had an issue.. I did not have POLST copy above the bed...

I do now.. I never go out of town.. and the one weekend I did... something happened... I left family to get home anyway they could... I took the car and drove...

Kind of... I had the DNR filled out , right to die.. and she was older... but one hospice over another is different.. my hospice team was not on duty...

The gal who came in, just said to crush morphine pills and slide it in her cheeks.. She forgot the ATivan... It was not fun ....

Angel.. that's my name for him... came in the early am, and got the ativan onboard, and got her angled so she wasn't choking/gasping/struggling... God, Thank you for your Angels !!!!

It really takes someone special, to know how to take care, and prepare someone for their final breath before death..

NOthing you can do will be right or wrong.. just know you loved her AND SHE KNOWS THAT...You need to forgive yourself and she has already done to you. She forgives you.. she knows you were trying to do the right thing.. doctors have the control sometimes...

DNR the right to die is so important, and we don't talk about it that much.. too deadlly... I suppose...

I have one already... not 60 yet,,, but the time will come.. my family knows what I want... not to be a burden... If I am not capable...do not plug me in... but do know that I need the hospice cocktail...at end of life...
I am ok... death is ok... A close friend told me that.. I finally get it.. Death is OK...
It happens..

I certainly do agree with lealonnie, when its her time nature will call it just like it did mom. mom was 92 on her second stroke when nature took her out 3 months later, her first stroke was 4 years b4 that, she recovered beautifully pyhsically, mentally was another story, the dementia was a trip, that progressed slowly to alzheimers, she was on a feeding tube, oxygen levels falling slowly, organs were slowly failing, etc. i would personally have felt gulity if i would have taken her off, was not my place to decide whether to live or not..i learned in school and from voluntering to let nature take its course.

No, often it isn't black and white like imagined. However, you must let go of the guilt, else it kills you.

After my mother suffered an ischemic stroke, there was an opportunity to administer an injection, which could have extended her life or killed her. I said no to the injection as she was 94 and there was a greater chance that it would have killed her. I came to terms with that decision as POA and don't hold any guilt.

I have found via personal experience and reading that guilt is a very common emotion during these things. My own personal guilt was that I made the staff feed my dad leading to a bout of pneumonia and also that I wasn't there when he passed.

From what I understand, if I had done those things "properly" I would have then felt guilt about something else. The psyche often looks for things to feel guilty about .

I think in this case had you stopped life support, you may have later felt guilty about that. Not that you should have felt guilty then either, but based on what I understand, people in our positions often unconsciously look to feel guilty. I don't know, maybe its a coping mechanism.

Where is your mom's advance directive? That should have told you her wishes. You shouldnt have to be making these decisions or second guessing yourself, or wondering what you think she may want. She should have had that in place before surgery.
Your mom sounds like a fighter, so I bet she will work to improve her situation. She is not done with her rehab yet or healing. She has a long way to go. Be greatful she is there and you have her. Dont worry about second guessing yourself. Move foward from where you are right now, and be greatful that you have her. Say all those things nice you want to tell her, because if she is gone you cant.

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.

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.

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 ?

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.

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.

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 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

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?

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.

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.

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.

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.

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.

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).

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.