Hope this post is in the right place! I apologise for the lack of information in this post.
My uncle was hit by a car and admitted to the ICU, he suffered extensive injuries including almost all broken ribs/clavicle/shoulder bones. Scans of his brain could not be done immediately, he remained on feeding tubes and a ventilator in a induced coma for a week in the ICU until they tried to bring him out of the induced coma multiple times to no avail. They completed a CT and MRI of his brain. My information is lacking unfortunately, as my aunty isn’t in the frame of mind to discuss what was said. All I know is that the prognosis was very bad, something about extensive small cell damage, he does not have any basic functions and remains at a 3 on the Glasgow coma scale. From this, the decision was made to take him off the ventilator/feeding tubes to let nature take its course. However, it’s been almost 4 days now and he is still breathing on his own, I have witnessed him open his eyes and seemingly respond to certain things. Normally after 48 hours they have to reinsert feeding tubes however the most info I could get from my aunty is that his circumstances are different. It’s a very difficult time for everyone, but to me if he is breathing by himself essentially he is now slowly starving which is not a natural death? Something just doesn’t sit right that he is keeping himself alive but via lack of nutrients and water he will now die. I feel like he hasn’t been given a chance at recovery but I can only assume that the information given to my aunty is that he will never recover. However I can’t help but think what if? but would it be cruel to keep feeding him while he has no function for the hope one day he may recover? I know he would not want to be here if he was permanently in that state. Has anyone experienced anything similar? I don’t know what the right thing to do is, and I know no one has the answer to that question but if anyone has any advice from being in a similar place it would be greatly appreciated.
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espy97
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Hello Espy. We had a similar situation several years ago when my father in law was officially put on the palliative 'Pathway' . He was in his eighties and terminally ill but my son, like you, was very disturbed by the practice and felt it was cruel.
Although there was little response from his grandad, my son, worried his grandad might be thirsty, gave him water by dripping it from a tissue but was spotted by nursing staff and reprimanded.
They explained that the amount of sedative and pain killing meds given to patients on the Pathway ensure that they don't experience hunger or thirst and simply drift away peacefully.
It'll be the decision of the doctors and next of kin (your aunt) to decide the outcome but, if she isn't up to discussion, you're entitled to ask for a detailed explanation with your uncle's consultant, on her behalf, as to why more time can't be allowed for further signs of progress.
I'm so sorry for all you're going through m'love, and I hope there can be a satisfactory and humane outcome for all concerned.
Please let us know how things turn out if/when you can Espy... x
Hi Cat, Thankyou so much for your response. It’s both comforting and saddening to know we’re not the only ones who have gone through this process. The decision was made to put him back on a drip for fluids, whether right or wrong - I personally feel this was the right thing to do. A week ago he could not do a single thing and today I witnessed him move his head and open his eyes. There is a rift in the family as my aunt (his wife), her sister and me all believe this is more humane. However my mum, and other aunt believe this will only prolong a heartbreaking process that has already begun. The doctors expected him to pass away within 24 hours as he would not be able to breathe on his own yet here he is. It’s so hard to know what he would’ve wanted in this situation, whether he would’ve wanted to pass away or to be given a chance to survive even if recovery was very bleak. x
It's a nigh on impossible call. But (in my opinion) if there are signs of progress, the patient deserves the benefit of the doubt. Doctors can be dismissive when progress isn't according to the book ; and doctors have been wrong in their prognoses in many cases, even in cases here on Headway.
There'll always be the dilemma of 'Would it be better for him to slip away ?' and that's a terrible burden, but if you and your aunt don't fight for him I suspect you'll be left always wondering and regretting not doing so.
I hope with all my heart that your uncle's situation resolves one way or the other without the need for further intervention. Please keep us posted when possible Espy.
I know that this kind of situation is excruciating for the family and for anyone who cares deeply about the injured party: Nobody wants to subject that person to terrible prolonged suffering, but people also don't want to give up "too soon". As you note, even you, being there, do not have the information to judge this, so I will certainly not opine on what your aunt and doctors are doing.
I will share that my cousins suffered terribly when their mother went through her end of life. They suffered first from witnessing their mother's pain and experiencing the ultimate loss. But they also suffered greatly from the feeling that their decisions were being judged harshly by some of their relatives. Accordingly, my advice is to tread extremely carefully.
First, be clear about your objectives. I assume that those objectives are not about you but rather are about helping produce the best outcomes for your uncle and aunt. What specifically do you want for your uncle? What do you want for your aunt? From your message it seems that you want your uncle to be given what he would want: A chance for recovery if that chance is significant, but otherwise, a tranquil death. For your aunt, I will assume you want her to suffer the least, either to get her husband back if there is a good chance of that, or, alternatively, to know that she has helped him pass away as peacefully as possible.
It seems that your opinion and assistance in making the decisions about treatment for your uncle have not been solicited by your aunt. In that lack of first hand knowledge, you wonder if you should be more active in probing his chance for recovery. I would be guided by your objective for her. If she expresses anxiety about the decision made so far or the process by which it was reached, then you have an opening to gently suggest some questions that she might ask to increase her peace with the original decision or possibly modify it. If she does not open that door then perhaps your best outcomes will be the result of:
1. Accepting the fact that there is not a path for you explore the recovery possibility without potentially causing your aunt great distress and potentially creating a permanent rift between yourself and your aunt.
2. Taking comfort in the fact that that recovery possibility seems very very slim, and most of all
3. Taking comfort in the great good that you can do by providing your aunt with validation, affection and practical assistance in what are probably the worst days of her life. She will never forget that and you, too, will remember your support of her with pride and peace.
I am so very sorry that this has happened to your family. You are clearly a very caring nephew and I wish you the best.
I totally agree, it’s hard to know what you’re really asking in these situations and if any answers will actually resolve the inner turmoil. My aunt believes he has a shot at recovery, even though from his scans there is almost no possibility of him regaining basic functions. As crazy as it sounds, in the last week I have witnessed him go from unable to move, to opening his eyes and moving his head. It’s so difficult to know what the right thing to do is, I don’t want to fuel my aunt’s beliefs as recovery does look so unattainable but secretly I do agree with her. However we both may be wrong, as it seems cruel to prolong his life in this state should he not get any better. She believes he should be given a chance, (whether that be weeks or months) a certain amount of time to see if he could recover, and after that period palliative care would be discussed again, and he would pass in the same way he will now (if he was not given fluids). My other Aunt however posed an interesting question of that if he does recover; but only to a point in which he can do very little (such as open his eyes, look around, grunt in response to questions). Then he would not be allowed to pass away on his own, he would have to be fed through a tube and he would not want to live in that state. We’re all trying to do what is best/kindest but it’s impossible to know whether your clutching at straws or doing what’s right.
I am glad to see that your family is having an open, healthy discussion of all the possibilities.
Given the points you shared, I have two additional possibly helpful ideas (if events have not obviated the need for the discussion) .
An Complementary Thought Exercise
For decisions that involve a lot of risk and uncertainty there is a "Managing Regrets" approach that can be useful. With this technique, instead of making decisions based on an assessment of the odds of this or that good outcome, you think to the future and lay out all the possible negative outcomes of the two candidate decisions; then you look at those potential outcomes and consider which of them you would regret the most. That gives a complementary view that can be helpful.
[For example, x years from now, what are a couple of the potential negative outcomes of the two current options you all are facing? For example :
Option 1. Palliative care now. Potential negative outcome: He had a managed peaceful end but she had to live on alone with the thought that there might have been a slim chance of significant recovery
Option 2. Prolong life now. Potential negative outcome: He was kept going but did not recover beyond a state he would not have wanted and indefinitely requires extensive 24-hour care.
Once you come up with the outcomes your aunt would consider: Which of these would she regret the most?]
Values Rather than Desires
Since your uncle did not seem to have left instructions that express his desires in this kind of situation your family group may be able to infer his wishes via discussing his values and how those affected other decisions he made in life.
I feel for you. It is a situation that plays out everyday across the globe, but each case is of monumental importance to the family and really to us all since our humanity is the sum of moments such as this. The good thing is that having thought it through together and made the decision with head and heart and spirit, you all have the power to make whichever decision the "right" decision.
Well done for staying strong, I'm sure the people around you are thank full for it. Because you love and care for them your searching for information and understanding which is perfectly fine and very commendable.
I have had a similar experience, I hope it can help give you some guidence.
My wife had what turned out to be a 13hour crainiotomy, which was originally planned as a 3hour operation. She was sent to neuro ICU after and interbated as she couldn't breathe for herself and eventually on a main line as well.
Over 3 days they tried to wake her but with no luck. After 5 days I had a meeting with the consultants and surgeon (who was in tears through out) they advised patients after this type of operation would be awake by now. They asked me to consider what condition she could be in if she were to wake and if I feel I could manage that condition on my own, what ever it maybe. They also stated they could never tell me to turn off any life support machines but that I needed to make a decision at that moment what to do. They were able to answer my questions fully and because I was on my own I also had support from a cancer nurse (my wife had a brain tumor) during the meeting who made sure I was happy with the responses I got and pushed for more information when I wasn't sure.
Personally for me, my gut feeling all along was that due to her existing illness (auto immune disease) and the amount of trauma she had been through prior and during the operation 5days wasn't enough for her to recover. I had personally seen reaction from her in hand squeezing, blinking and increased heart rate when I would visit, but the consultants argued this was a natural body response and not her communicating.
I set a limit of continuing support for 4 more weeks, which they complied with happily and i believe they did everything they could for her in respect of medication and assisting recovery, even beginning OT rehab.
3 and a half weeks later, she woke and next day moved to a general ward. The same surgeons and consultants were amazed when she did wake, we are still monitored by them today and they are pleased with her progress.
I learned there is always hope but you have to be realistic, trust your gut feeing. I also learned shortly after that my mother in law and brother in law had they been there to be asked to make the descison instead of me, would have stopped any care after 5 days.
Thankyou so much for your responses everyone. My uncle passed away yesterday but it’s a small comfort to know we did what we though was right. My thoughts are with all your families or friends that may have gone through this and I wish you all the best x
Oh Espy, what a sad time this is for all of you. Yes, it is clear that you pulled together as a family and and gave him the chance if it was available. My condolences. Thank you for letting us know. We were invested in you.
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