At what point after coming off of life support should Dr’s rethink their decision? My girlfriend was taken off yesterday, her ventilator was removed. I agreed to remove the vent and not have any shock to restart her heart when she passed. I also stipulated that I wanted her lasix to continue to flow. When she was taken off the vent her breathing kicked in and she was maintaining life sustaining levels on her own but a little on the low side. After 6 hours I told the Dr’s she needed medical help instead of assisted death treatment. He children over rode me and I had to leave the hospital. This morning she is still going strong but they turned off her lasix and her IV water source. She went to the hospital for stomach pain, they overloaded her with fluids, she was already slightly overloaded but not symptomatic. She is not dying at this point she is being killed. She has underling issues but not even close to end stage. Her chart says she has COPD, I have never noticed it. She is on supplementary O2 but only uses it when she over does her pain killers a little bit.
When do you say this patient does not really need to die. It would take about 1 or 2 more days to remove the remaining excess fluids. She was on life support for 14 days, 8 of which they continued to overload her fluids. Her lung tissue is saturated with water but no fluids are seeping into the lungs. Her kids are trying to do the right thing but they believe everything the Dr’s are telling them even though the Dr’s never even bothered to review her charts beyond bottom line number from day to day.
Oh how awful. I’m so sorry to hear this. I wish I had some substantial knowledge to offer but I don’t. I guess I just dropped in to say I’m here and I care.
I’m very sorry this is playing out in this way. I can only imagine how excruciating it must be to be over ridden. You have my sincerest and deepest sympathies.
Sorry you and she and her kids are going through this.
In a perfect world, everyone - while upright and healthy - would discuss this sort of thing with with a close friend or family member, and maybe even draw up a living will that stipulates what kinds of treatment they do/don’t want, and authorizing that person to make decisions on behalf of the patient. Sadly, I think this kind of forethought is rare.
Has your girlfriend previously discussed with anyone - you or her kids - what her wishes would be for herself if she ended up in these circumstances? It sounds like you’re not married, which means (I think) the kids are the ones with legal authority to make health care decisions on her behalf. Are they basing their decisions on what they would want for themselves if they were in her position, or are they making a good-faith effort to estimate what she would have wanted if she were able to make decisions for herself? It should be the latter, and while you may not have legal authority in this situation, if she has expressed to you any thoughts or opinions in the past about what she would want, then you should tell the kids, and they should take that into consideration.
If you’re thinking of “end stage” as “will die within a few hours, even with life support”, then you may be right that she’s not there yet. But it may be that the doctors think she will never regain consciousness, and will inevitably die, even with life support, even if it takes many months; people with no hope of recovery have in some cases been kept on life support for years.
Can you share more about what her prognosis was, assuming life support had continued?
I am so so sorry that you are having to endure this. As someone with no blood family who just lost a dear friend earlier this month, I understand the agony of not being a legitimate participant in medical decisions related to your loved one. My (now deceased) friend’s daughter read me the riot act when he was in hospice about not talking to the staff about ANYTHING medical re his condition*–everything had to go through her. Having the door slammed in my face like that was was extremely painful. And you being overruled and shut out of decisioins by her family with no recourse or basis for appeal… I’m hurting for you as I read this. {{{Hugs}}}
*He was actually dying, so it’s not totally analogous to your agonizing situation.
Well, if the person regains consciousness and asks to be re-evaluated or negates a DNR definitely that’s a time to re-think…
But when someone is comatose it’s more difficult. I think, from TV and movies, people have this notion that if you shut off a ventilator death comes almost immediately but that’s often not the case. It can take surprisingly long to die.
You gave some details, but not enough that I have any real idea what’s up with her - and that’s OK, her medical condition and details are really not my business and you are under no obligation to speak further of them.
How much care to give, and what, at the presumed end of life is a more complicated question than you might think.
First and foremost best wishes for you during this very difficult time. It is I am sure all the more difficult because of the sense of powerlessness and frustration that you must be experiencing as her family makes decisions on her behalf.
I’ll try to help answer the question asked. It is time to rethink a decision when something happens that makes one think the basis of the decision was wrong. If the assessment was, based on the response to interventions, the clinical course, and knowledge of past cases with similar clinical courses, that life support was prolonging death but offering no realistic hope of recovery, then something would have to happen that would make them believe that they were wrong. Spontaneous breathing off the ventilator likely is not that something and I’d be hard pressed to imagine what would be. Hopefully someone like SuperAbe can chime in with some hypothetical what that could be. If the assessment was that there was some chance of lung and heart recovery to prolonged existence level but no real hope of brain recovery to really being aware of self and surroundings, then the something would something that altered that.
Your anger at this circumstance and the loss as it occurs is understandable. But it does not sound like they are killing her and overloading her with fluids would not have caused this.
I have no idea what your relationship with her family has been and is, or what sort of people they are. But while being dealt out of having the power to make these decisions, as you have been, is hard, being the ones to make them is also difficult, and they are the ones who have to make them, and they are going through their process of dealing with this too. My only concrete advice to offer is to be very aware of how hard this is for them too, and express your thoughts and feelings to them in a manner that considers that carefully, as hard as that can be while in such pain yourself.
May her, your, and her family’s paths be the best paths that the current circumstances allow, whatever those paths turn out to be, and may those of you who have cared about her find comfort in each other.
She passed a few hours ago. I will get back to the thread tomorrow. her underling issue of COPD was something on her record because she was a light smoker but I was never aware of it. She had pretty normal wind function when walking and working around the house. Normal life. She had I lobe removed from a lung a few years ago because of a cancer diagnosis that turned out not to be cancer. Her mental state was still fully responding and able to grasp conversation even under the heavy anesthetic she was under, propoful and morphine. She was diagnosed with end stage non compliant lungs. The lungs were not non compliant they were flooded with water. She was maintaining 80%, and this was with flooded tissue. Her entire body was like a water balloon. Once they pulled the plug until they cut off the lasix. I am done with it anyway, she is gone and I am not looking back.
