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Thursday, January 02, 2014

It's easy to talk when you haven't been through it
Posted by Jill | 7:55 PM
It seems that everyone has an opinion on the tragic story of Jahi McMath.

For those who haven't heard about this yet, Jahi McMath is a 13-year-old who underwent what was supposed to be a routine tonsillectomy at Children's Hospital in Oakland, California. After surgery, she went into cardiac arrest after coughing up blood and has been declared brain-dead by the hospital. Jahi's family does not believe that she is dead and has been fighting to keep her on life support. There were earlier reports that a facility in New York has been found that is willing to take her, but more recent reports simply say that the family is trying to find a facility. If they do, Jahi needs to have a tracheostomy and percutaneous endoscopic gastrostomy (PEG, or feeding tube into the abdomen) before she can be transported. The hospital is refusing to perform this procedure because they regard Jahi as dead and legally they have no obligation to perform procedures on a dead person. There is at this point no outside physician set up to come in and do this, and it's questionable whether any physician would even be willing to. Of course the usual assortment of ghouls has come out of the woodwork, with a foundation dedicated to the memory of Terri Schiavo working with the McMath family.

Back when the Schiavo case was all over the news, to the point of federal involvement by officials smelling Christofascist Zombie Brigade votes, I too thought the case was cut-and-dried, that Schiavo was indeed brain-dead and that there should not be an issue here. I still do. But I no longer regard people as stupid who believe that their loved ones who are on ventilators are still present in their bodies. I no longer regard them as stupid or deluded because I've now been there. I've now seen it. I now know what it's like to see the person you love open his eyes and at first you think he's looking at you but there just seems to be nothing going on behind the eyes. You don't know if he's seeing you, if he knows you're there, if he feels you massaging his feet that are so swollen they feel like massaging wax, if he hears you tell him that if he will just wake up you will take him to the Grand Canyon and fly first-class, if he hears the music you play on your iPad on his pillow. You don't know until they shine a light in his eyes and stick a Q-tip in his nose and into the back of his throat and he doesn't blink or sneeze or gag -- and even then you don't know because hey, he opened his eyes, didn't he? I now know what it's like when the nurses turn the person who used to thrash so much during the night that being in the same bed with him was like being on a storm-tossed sea. I now know what it's like to see your spouse open his eyes after they take the ventilator off and run out of the room yelling at the nurses that they promised he would be sedated and comfortable -- and have them tell you it's just a reflex.

I know what it's like to sit in a room full of doctors and patient advocates and other members of hospital officialdom a week after he should have awakened and two days after the neurosurgeon you still trust said that he doesn't think it's time yet to talk about options, that he thinks your husband will still wake up. I know what it's like to be given four options as to what to do now that your husband's brain has shown that it simply cannot handle the withdrawal of even one of the four anti-seizure medications they have been pumping into him without going into seizures, only now it's seizures on BOTH sides of the brain, not just the left. Yes, Mr. Brilliant had an advance directive that made clear that if I agreed to have him trached-and-PEG-ed and moved to a rehab facility, and he ever woke up (which was doubtful) and had to re-learn how to walk and talk and feed himself, that he'd be really, really pissed. But that doesn't make it one bit easier to say "He would not want to live this way" and make him "withdrawal of care", as the hospitals call it. The only thing the advance directive does is keep you from being in this limbo of hoping for a miracle.

I also know what it's like to second-guess yourself endlessly, especially after seeing things like this, which seem to reproach you for not doing whatever you would have had to do in order to get a reluctant patient to the emergency room and taunt you about someone whose spouse DID get her to the ER and she recovered from a stroke. The second-guessing is horrible, and I will probably do it forever -- playing that Saturday over and over and over again and wishing I'd called Dr. Chess Club as soon as Mr. B's speech started to slur instead of being weary and not fighting his refusal because for months he'd been getting angry with me and lashing out every time I reminded (or nagged, if you prefer) him to drink water for hydration, or noticed something that wasn't quite right -- and wondering afterward, after seeing things like this if that would have made a difference.

So I really can't judge Jahi McMath's family for refusing to believe that their daughter is gone. Her chest moves up and down with each breath, even if that breath is being accomplished with a ventilator. Maybe Jahi's eyes are opening too, only her family doesn't work on oncology trials and doesn't know enough to be the pain in the ass that I was. They see her eyes open and they see her "breathe" and they simply cannot fathom that while the lights may be on, there's nobody home in there.

I was lucky, as odd as that sounds. I dealt with doctors who were empathetic and caring and really "got" what my dilemma was and how much I wanted to balance hope with Mr. B's wishes. They knew the mental anguish I was going through and tried to do everything possible to give me the medical information I needed in order to try to put my mind at ease -- not that anything would have worked, but I give them credit for trying. There are things I wish they had done differently, of course; I wish Dr. Chess Club had emphasized that Mr. B. was still at risk of stroke and and about what symptoms to be vigilant. I wish a hospice nurse had been there at the end and that it had been better explained to me what to expect after the ventilator had been removed. But no one is perfect, and no one called Mr. B. a corpse or a dead person the way Children's Hospital is being with the McMath family. Bedside manner matters. Even when critical care physicans have to detach because if they got emotional over every patient where something goes wrong, they'd go nuts in short order, the illusion of caring matters. The doctors at Big Prestigious Hospital may or may not have actually cared, but they at least gave the illusion that they did. It appears that the doctors at Children's Hospital aren't doing that, and they are reaping the consequences.

I'm not sure one ever recovers from having to make that choice, to sign those papers, to make the affirmative decision to "let go." I don't know if I ever will. Yes, Jahi McMath is probably dead. But not so long ago she was a happy 13-year-old girl with hopes and dreams and giggles; just the way Mr. B. went from putting his resume back on the job boards and looking forward to a nice Thanksgiving dinner to celebrate the end of his cancer treatments and recovery from two brain surgeries to lying unknowing in a bed in an intensive care unit with tubes coming out of every orifice in his body. It's hard to wrap your mind around that. I had an advance directive and kind and caring physicians and a good support structure and enough understanding of medical terminology to provide a road map to the right decision, even if I do still second-guess myself. The McMath doesn't seem to have any of that. So I can't judge them, even if I think they are wrong.

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Blogger The New York Crank said...
Jill, we have both been through similar events and we have both discussed this privately. Frankly, I think we both suffer from something very much akin to post traumatic shock syndrome, if not the genuine article.

There are no words, but I'll say them anyway. I agree with what you've written here. The decision to "let go" of a loved one who lies in a bed breathing, whose body is warm, but whose brain is gone, at least according to the best medical wisdom we have at the moment – it's unbearable.

I, too, had the signed sheet of paper, a clear knowledge, often repeated to us, that these were her wishes, and rational confidence that she was already dead.

But there was still what they call a "reptilian brain" in there that fought to the end. At least by appearances, she did not go quickly, or easily.

It's three years an a month since I lost her. Those last moments haunt me still. And I, too, have essentially the same "living will," that instructs my proxies to pull the plug. I may not know what's going on when it happens. But do not envy my proxies their last moments with me.

-The New York Crank

Anonymous The WP said...
It takes an enormous amount of strength to write what you wrote, and it will take an enormous amount of strength to nurture yourself enough to understand/believe/know you made the best decisions you could knowing what you did.

Do we ever know for sure? No. Is there ever complete resolution? No. Do we finally learn to live with ourselves? Yes.

No survivor ever knows for sure which decision set the wheels in motion but the bottom line is that it doesn't matter. You and Mr. B. had the conversation, you each knew what to do for the other, and you make decisions. That's the best you can ever do.

From strength to strength.

Anonymous Anonymous said...
I am a lurker here and have followed your trials. I am so, so sorry for everything you and Mr. B went through.

Blogger Now Am Found! said...
my heart breaks to read of you and him and the ordeal you went thru

Blogger Buzzcook said...
Schiavo's husband, the person in charge of what to do with her, decided that the best thing to do was to let her go.

McMath's parents, the people in charge of what to with her, have decided the want to keep her on life support.

I support both and so should the law.

To bad the staff at Children's hospital are being dicks about this.

I have volunteered at children,s and wouldn't have suspected they would act that way.