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UsaPositive Asked January 2014

Do we follow Mom's wish of "live by whatever means" or family decision "quality of life"?

My mother was my father's primary caregiver, he has parkinsons and alzheimers, she's much younger than him and suffered a traumatic brain injury after falling in the hospital, after a long and painful road, she was able to come home with extensive needs but had a setback (seizure) and has been in the hospital/another surgery/subacute since then, she was in a temporary long term placement and all pt/ot ended due to insurance, we were in the process of having her transferred to a different location where pt/ot would be included, but she had a setback is now back at the ICU.....everything is "maybe an infection", "maybe a slight pneumonia", maybe it's neuro-related, maybe this, maybe that.....i get it, it's the complications that happen not only after a TBI but also being in a hospital/long term setting/not moving around.....here's the main question: she's currently on a vent & pulmonologist is recommending trach instead since it's more comfortable, less chance fore infection, and it would be easier to wean her off (if that time comes).....my entire family is aware of my mother's wishes which is use whatever means possible (considered a "full code" at the hospital), there is a sibling or 2 that is talking about "quality of life", etc....but who are we to determine that?....not to mention these are the same siblings that have created such family drama since this disaster are completely disconnected ....the doctor made it seem that the trach would be common practice procedure. If the recommendation is to do the trach, can certain family members refuse this, others (me included) want to proceed and i think by not making a decision, they are basically making a decision which would probably end her life sooner....one sibling is already talking about having hospice involved, etc.....only God has the answer about when it's time to leave this hell, as far as durable power of attorney, me & my sister share the medical and i have legal, however, this is also a source of extreme tension since some of the siblings refuse to acknowledge this document.....we were actually in the process of proceeding with co-guardianship but one sibling is contesting everything, he has serious issues (a whole separate story).....i'm severely struggling because i know what my mother wants regardless if some of us think otherwise.....i don't know want yet another battle on my hands but then again it may be worth it in the end to honor my mother's wishes.....any input is greatly appreciated.....

PCVS Oct 2014
Are they thinking of inheriting from a possible lawsuit against the hospital where she fell?

PCVS Oct 2014
Your mother trusted you and your sister to see to her wishes. Follow them as much as is humanly possible and stop worrying about the siblings who love themselves more than they care about their mother. End of story.

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UsaPositive Feb 2014
Thanks everyone, she had a trach a few months ago after the initial craniotomy (after weaning off the vent), she did improve after the TBI but after a long road of rehab, subacute stays, etc, came home for 10 days but then had a seizure 4 months ago and it's been a disaster since then.....i love the peanut gallery comment because that's exactly what has been going on & nothing ever gets done. Yes, her statement about full code, etc. was before the TBI but of course a few in the peanut gallery are stating that she would not want to live like this (is not consistently alert). The doctors have NOT stated that there is no hope which is why the trach is being recommended. There is a DPOA, i have legal, me & my sister medical. There a several issues to note. A few of the siblings are not in agreement w/ the DPOA (it was a riot when they found out about it) and previously threatened to take me to court (many ugly allegations/threats all when I was 5 months pregnant at the time, can't make this stuff up). Needless to say, it has not been used in any capacity, so there was nothing to contest. We recently were in the process of arranging co-guardianship, me & my sister, all parties agreed after a long discussion, but then one big-time bully who lives out of state is contesting this. So since he threw a wrench in things, our plans did not move forward and the only person suffering is my mother. Basically he is the one now suggesting that the trach NOT be done and do hospice care instead. Although hospice may be an eventual plan, NOT NOW, all measures have not been taken, infact the trach is not considered excessive. He tends to manipulate the other weak-minded siblings. So of course, I'm the "bad guy" again but I could care less because how dare I go against them!! (they are older and are doctors too, go figure, but that does not intimidate me/never has). Meanwhile we all know what my mother stated in the past, the only thing is that she did not set forth any special conditions. Hospital social worker states the trach IS common medical practice, etc. So my sister apparently is in agreement with him so now what ??????????????????? A recent meeting that we had went ok but in the end all plans went out the window because of one person who I no longer consider my brother. It's an utter disgrace but this is one issue I won't back down on.....never thought this could ever be

pamzimmrrt Feb 2014
Trachs are common, reversable and much more comfortable than an ETT. They only provide a better airway, and are able to be used by many to both eat and speak. Go for it...

norestforweary Feb 2014
The tracheostomy is common for people on a vent for a while. What does the critical care physician say your mother's prognosis is? Ask the doctor if it were your mother what would you do? That can help you make decisions. It is common for family emotions to be crazy under all this stress. People do improve after a TBI with therapy, but depends on extent of injury. What is the present mental status of your mother? Sorry to hear you are going through all this.

sunflo2 Feb 2014
Did mom have AMD? If so, honor it. If mom is conscious or cognizant and can still nod her head and express her wishes, then have dr and care team help her thru the questions.

If you have medical POA, and she was clear as to her wishes, then you must honor that until medical situation deteriorates such that dr feels extreme measures will no longer be beneficial.

Eyerishlass Feb 2014
Whoever is granted the medical directive needs to make the decision if your mom is unable to make this decision herself. When did she say she wants to be full code? Prior to the TBI? After the TBI? This makes all the difference in the world in making a decision. If this was her wish prior to the TBI then this wish needs to be respected. If she voiced this wish after the TBI then her state of mind needs to be considered.

If it comes down to you and your sister who both share responsibility for healthcare decisions then just you and your sister need to figure this out and tell the peanut gallery to back off.

Veronica91 Feb 2014
Having a tracheostomy does not limit the amount of interventions mom may need. she can still be attached to a breathing machine and may be able to communicate with you better. Most people are able to talk by putting a finger over the trach. Definitely a much more comfortable option than being intubated.
as long as you and your sister are in agreement go ahead as soon as possible it is a quick simple surgery and in the event she no longer needs assistance the surgery can be reversed.

Countrymouse Jan 2014
If you and your sister have medical POA - which you had better assume is valid until proved otherwise - and you are both clear on your mother's wishes, and the two of you do not follow your mother's instructions by accepting medical advice and consenting to the recommended treatment… then you could be in SO much trouble it doesn't bear thinking about. No choice. Sign the consent form.

pamstegma Jan 2014
Follow the MD's advice, do the trach. When she reaches the point that further interventions won't help, the doctors will let you know. Be sure you are signing as POA only and do not accept financial responsibility.

jeannegibbs Jan 2014
I don't want to be kept alive at all costs. My husband did not. My mother does not. But your mother does. End of story.

Medical POA gives you the tough decisions to make. Sorry. Mother must have trusted you a lot to give this honor and duty to you.

Hugs to you in this difficult situation.

gladimhere Jan 2014
You need to honor mother's wishes. Is she concious? There may come a time when doctors will tell you that this is not going to work. Then you need to listen to them and make the decision. Sure, quality of life should also be considered. Many times when these forms are completed people think the bad scenarios will not happen to them. This must be terribly difficult for you. If mom is conscious you might want to explain the prognosis and see how she wants to deal with it.

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