Worst case scenario is that when they remove the respirator, she won't be able to breathe w/o assistance and docs will insert trach & feeding tube instead - which everyone knows she would not want.
I am so sorry. Is there no way the doctors will listen to what everyone knows she wouldn't want?
It's devastating to hear she has no Advance Medical Directive, Durable Power of Attorney for Health Care, nor DNR (Do Not Resuscitate) order in place.
A friend of mine, under the emotional stress of impeding loss, made a terrible decision re. a feeding tube. Her father had had a massive stroke and at some point, her naive mother expressed great distress at the idea of him "being hungry" so against a little voice chiming in her head, my friend okayed the insertion of a feeding tube. This strong man lived for SEVEN YEARS, completely paralysed, in bed. It destroyed several lives. He was NOT happy. Turns out, the ease of deciding to "add the tube" was instant--an easy piece of advice for doctors to give, and my friend wasn't at that moment clear enough to think it through. But legally, they could not decide to withdraw it later on when they had realized they'd doomed him to a horrible existence, or it would be murder.
They COULD have decided never to insert it in the first place. But once it was in, they could not change their minds. It was a terrible mistake. I often thought my friend would die before they did.
NOTE TO EVERYONE: These are easy and inexpensive documents to create and if you don't have them, create them right now! (You can go to NoloPress.com or legalzoom.com and do them yourselves for a pittance.) The DNR can be requested from your doctor if you're unwell and don't wish to be revived--it's just a one-page thing you post on the refrigerator in case an ambulance is likely to be called.
But the first two, Advance Medical Directive ("Living Will") AND a Durable Medical Power of Attorney are critical to have--for anyone at any age in life. Make sure your doctor has a copy and that another is filed with whoever you assign, and keep another copy filed in an obvious place at home.
I hope she can be spared a respirator again -- I will never forget a friend dying of lung cancer who was trapped on a respirator and managed to scrawl for me on a pad with her left hand (the right being encumbered by an IV needle): HELP ME.
No one could. The tools and machines and assumptions that life-prolonging technologies would be done to her body whether it made a rat's spit of sense or not were all in charge. It was all about legal issues and liability. Did not have ONE THING to do with what was best for her. She was tortured by them until her end.
I would say, do not try to awaken her. Do not rouse her. Do not try to make her breathe. Do not try to make her get well or "recover". Do not try to make her notice she is still alive. It is so HARD to die anyway and one needs to be allowed to do it. Coma is a blessing. Don't worry if she goes or not, just insist on good medication for pain and to ease the respiratory distress. Her body will stop in its own time if allowed to.
When someone with terminal cancer has had a stroke and can no longer breathe without assistance, this means that their body would like to stop breathing. Why doesn't medicine have common sense?
Morphine and sedation and palliative care are wonderful to ease the passage but nothing will stop it. These other aggressive interventions are mindless and pointless and there is no quality of life to look forward to. But decline and misery can be dragged out for a horribly long amount of time if there is too much intervention.
My mother was paralysed for 14 months in a nursing home after a stroke and for her sake, I wish she had NOT had long-term care, or had those miserable months in diapers. I wish the stroke had arrived with complications that would have helped her out quickly. As it was, she had to wait for infection number umpteen to finally, finally render her beyond medical "help".
The very last coherent thing she said to me was, "Honey, I'm so tired." Well, damn.
Courage and strength to stand up for her peace, Amber...and much comfort to you.
I hope all the family will have a pre-emptive, pro-active meeting with the doctors NOW to ensure that whatever unofficial DNR is legally permitted in these circumstances is entered in her record NOW.
My mother was with it enough to decide on the DNR for herself, so the EMTs asked her and her own doctor confirmed. But too many times, this decision is not made and the default is worse hell for the patient.
love (and forgive me the ranting, don't want to add to your stress--you are doing RIGHT by her and the very best anyone could ever possibly do...)
Hops
