My mom went in for a routine heart catheter last month. There were major complications, a dissection of the artery, to be specific. After emergency double bypass, the prognosis was grim. My brothers and I, as next of kin, were prepared to "pull the plug" so to speak. She was on full life support immediately after. We were prepared for her to die, and I know she wouldn't have wanted to be on life support. We were told to be patient, we don't need to decide in the first couple of days.
Our immediate concerns were her cognitive function. But then, she started to wake up on the third day. She was nodding, squeezing fingers, etc. At that point, even though she was still on life support, it seemed that ending it wouldn't be right.
Long story short, after a week of intubation and 4 weeks in the ICU, she moved to a long term acute care hospital. Her mind is clear and memory fine. But many physical problems are present, including dialysis, critical illness myopathy/neuropathy, inability to swallow (feeding tube). She hasn't been on her feet yet. The doctors are hopeful she will regain kidney function, ability to move more, swallow, etc. but it is still early to know.
I feel guilty because I'm afraid her quality of life is going to be very poor here on out. I know she's just starting therapy/rehab, but I'm not very hopeful. She hasn't expressed any anger at us, but she's frustrated.
I feel guilty because I think she would have rather died than go through this. And we had that chance. She is 75 and was very active and healthy before this. I always thought pulling the plug would be more of a black and white decision, e.g. "brain dead." I guess not. How do I reconcile this? Perhaps in time, and second guessing does no good. Anyone else experience something like this?
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.
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.
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.
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...
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..
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.
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.
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.
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.
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.
Maybe SHE had a decision point in that interim time, while she was on life support? Perhaps she made an informed decision ?
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.
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.
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
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
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.
I am an ICU RN.
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.
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.