Finally tonight, a Special Comment about health care reform and tomorrow’s summit at Blair House. If I prove to have trouble getting through this, I apologize in advance. Last Friday night my father asked me to kill him. We were just shy of six months since he was hospitalized and it was the end of a long day at the end of a longer week.
Not to get too clinical or too grotesque on you, but he’d had his colon removed at the end of September and that went so well that it was no more complicated than an appendectomy. But what followed was a series of infections, like storms in the monsoon season, one arriving, blossoming, inundating him, my Dad shaking it off and cheerfully bouncing back, and then within days another one coming in to flatten him once again.
Pneumonia, three or four times — I’ve lost count. Kidney failure, liver failure — the liver failure got better, remarkably enough. Dialysis, feeding tubes, drainage taps, drainage tubes, breathing tubes. Couldn’t talk through that. Then he got strong enough and they could put a cap on the breathing tube and one day he scared the crap out of a friend of his who didn’t know, who came in and gave him the customary “how you doin’ Ted?” only to jump out of his shoes when my father suddenly and gleefully answered him in a strong full voice, “surprisingly well.”
Sometimes he swelled up and looked like as puffy as prizefighter who’d had a bad night. Sometimes he’d get dialysis so effective or an antibiotic so specific that he would look like he did twenty-five years ago.
Three weeks ago they had found something extraordinary. A nurse noticed what seemed like a minor infection just below the surface of the skin, a kind of super-pimple if you will. It was actually the edge of a series of abscesses which would be drained and would produce, all told, about six liters of infected stuff. Six liters. You know how much that is? You know what that looks like? You don’t want to know.
But you do want to know it’s been found because it means he hasn’t been weak all this time, he’s been incredibly, inhumanly strong. The abscesses were swimming pools for these infections. The strongest one would emerge, then my Dad with the help of the antibiotics would kill it off, then the antibiotics would be discontinued, and the next infection would pop out and challenge him.
As he pointed out you know: just like the organized crime families. Then last week they found another abscess of sorts, in the chest. So they needed to put in drains there, too. This was Friday morning. His surgical team came to see him, he did his non-verbal caricature of their chief, they laughed like hell, they numbed him up, snip snip, plug plug, and this infection starts draining, and they leave him alone for awhile.
And then in the afternoon they changed a few of the plugs the IV’s attach to. And the respiratory therapist had been in, checking the ventilator and his tubes because there was a leak somewhere. And to improve dialysis, they changed his dialysis port. And then in the evening they needed a CAT-scan of his chest to make sure the drains were in the right place. And they had to change a dressing on some bad skin. And every hour they had to draw blood to check how well he was getting oxygen. And then at night it was time for dialysis using the new port.
And that’s when I showed up. My father was a little annoyed, the way he often gets in there annoyed about all the activity. That day, it was like being Sisyphus with the boulder, only at the top of the hill, when he loses the boulder, it doesn’t just roll back down hill, it rolls over him, first.
He’s brave about pain, provided you warn him in advance, and provided the sheer volume of activity doesn’t terrify him. As in terrorism, it isn’t just terror when it happens, it’s terror that it might happen. So he’s annoyed, but in a good mood, and, as I usually do, I sit down to read to him. Thurber. I’ve been reading him a lot of James Thurber short stories lately and he’s insisted that I should do it on the show, and we’ll see about that. But a few pages in, the x-ray technician shows up.
They have to take one more picture of him, to see if those new drains in his chest are working. And I have to leave his room for, at most, three minutes. I come back in and my father is thrashing his head back and forth. You can’t hear him, he can’t speak at the moment, but you become a lip-reader in those circumstances and this one word he keeps repeating is not tough to discern.
“Help.” He is mouthing the word “help,” over and over and over again. And I get his attention. He is in full panic. Maybe the x-ray tech hurt my Dad’s back, or touched those new chest drains — more likely he did nothing very much at all. But it was just too much for my father. “Stop this,” he mouths. “Stop, stop, stop.” And I say to him: I know for a fact they are not doing anything more to you tonight. And he looks at me and starts thrashing his head again: “Help, help, help.”
I get his attention again. I ask him: do you want me to stop all of this? And he looks at me and mouths “yes.” And I ask him: you understand what happens then. And he looks at me and mouths “yes.” And I ask him: you realize you are not terminally ill, and if we do stop all of this, it might not be quick. And he mouths “stop this.” And I say, trying to joke him out of it — and trust me, gallows humor is your best defense in this situation — “what? You want me to smother you with a pillow?” And he mouths “yes — kill me.”
I told him that obviously I wouldn’t do that, but I would go and talk to the doctors. When I came back, I told him they’d be really put out by this, because he wasn’t sick enough and all the indications were he could still fight off what remained of the infections. And he went back to thrashing his head and mouthing “help” because clearly I was not giving him the sense of relief — relief from the paradoxical truth that people desperately trying to save your life, sometimes manage only to torture you. Of course, I actually was getting him that sense of relief.
When I went to see the Surgical Intensive Care Unit resident I told him my Dad had hit his wall. That he couldn’t take any other work, that it was now terrifying torture, that he needed it to stop. But I said, look, I’m his health proxy, we’ve had conversations about end-of-life care — we’ve had them in here, we’ve had them when he was home and well, I’m not operating in the dark here. I said I think he really wants the one word he keeps mouthing: He wants help. Is there any medical reason not to give him some sedation, a little mental vacation from being a patient?
The resident thought that was a damn good idea and that it would help his breathing, which the respiratory therapist had noticed wasn’t quite right. So when I came in and gave my father the song and dance about how “put out” the doctors were, really, I was just stalling. I started to read to him again, and he was still thrashing his head from side to side in frustration, and then he started to calm down and enjoy the story and as he began to rest, the nurse slipped in and injected a sedative into one of his IV’s.
And as I left that night the full impact of these last six months washed over me. What I had done, conferring with the resident in ICU, the conversation about my father’s panicky, not-in-complete-control-of-his-faculties demand that all treatment stop, about the options and the consequences and the compromise — the sedation — the help for a brave man who just needed a break… that conversation, that one — was what these ghouls who are walking into Blair House tomorrow morning decided to call “death panels.”
Your right to have that conversation with a doctor, not the government, but a doctor and your right to have insurance pay for his expertise on what your options are when Dad says “kill me” or what your options are when Dad is in a coma and can’t tell you a damn thing, or what your options are when everybody is healthy and happy and coherent and you’re just planning ahead your right to have the guidance and the reassurance of a professional who can lay that out for you that’s a quote “death panel.”
That, right now, is the legacy of the protests of these sub-humans who get paid by the insurance companies, who say these things for their own political gain or like that one fiend or money. For money Betsy McCaughey told people that this conversation about life and death and relief and release, and also about no, keep treating him no matter what happens, until the nation runs out of medicine, she told people it’s a death panel and she did that for money.
It’s a life panel. A life panel, it can save the pain of the patient and the family it is the difference between you guessing what happens next, and you being informed about what probably will, and that’s the difference between you sleeping at night or second-guessing and third-guessing and thirtieth-guessing. And it can also be the place where the family says ‘we want you to keep him alive no matter what, we believe in miracles’ and the doctor saying yes.
Nobody gets to say no except the patient and the family. It’s a life panel. And damn those who call it otherwise to hell. And that brings up the other point of all this. They’ve rolled my father under every piece of machinery in there except an atom-splitter. They’ve pumped him full of every drug and remedy. And he’s got Medicare and a supplemental insurance and my out-of-pocket medical bills over the last six months have been greater than my Dad’s have.
And why in the hell should that not be true of everybody, in every hospital, in every sick room, in every clinic, in this country? What is this country for if not to take care of its people? Because whatever I’ve been through these last six months and whatever my Dad’s been through, not once were our fears or our decisions amplified by the further horror of wondering how in the hell we would pay for this. What about families having these conversations tonight about kids? Or about uninsured adults?
Or what about the guy out there whose father is 50 and he’s mouthing the word “help” and the guy knows what his father doesn’t know that the insurance company has just declared the illness the father has is a “pre-existing condition” and he has no insurance, and when that son goes out to talk to that doctor about what to do next, even if there’s a chance of recovery, that son can’t afford to pay for it! That is the goddamned death panel, Sarah Palin.
Since Friday night, my father has been comfortable. He has been breathing well, and there has been no sign of stress or discomfort. He has also not awakened. His white blood cell count, the indicator of infection, is now at about four or five times normal. Doubtlessly, in removing that much infection from him, some of it got loose and into his bloodstream.
He’s not being sedated any more; he only has the strength to fight off the infections, or wake up — not both. We’re hoping he does the first, then the latter. We’re prepared for the probability that he will do neither. His team and I had another “life panel” discussion not six hours ago. And thank God I had those conversation with my father.
Thank God I got his instructions about when to use my judgment and when to stick with his; when if he’s capable of recovery to let them use everything they have and when to make sure they’re not just keeping him alive with no hope; when to listen to the instruction “help” — first, and then the one about “stop” — later.
So, considering that if he does not recover, you will not see me here for awhile, I have some requests. First of you: Please have this conversation with your loved ones. Don’t wait. Do it now. It’s tough. It acknowledges death. And it also narrows the gray area you or they will face, from infinity to about a foot wide. It is my greatest comfort right now and I want it to be yours.
And to the politicians who go into Blair House tomorrow for the summit: I have some requests as well. Leave your egos at the door. I want, I demand, that you give everybody in this country a chance at the care my father has gotten. And I demand, that you enact this most generous and most kind aspect of the reform proposed: the right to bill the damned insurance company for the conversation about what to do when the time comes, the Life Panel.
And I want all of you to think of somebody lying in a hospital bed tonight who needed that care and needed that conversation, and imagine that that is your father, or mother, or son, or daughter, or wife, or husband, or partner. If you cannot do that, if you cannot put aside the meaninglessness of your political careers for this, my request to you then, is that you not come back out of that meeting for you would not be worthy of being with the real people of this country who suffer, and suffer again because you have acted on behalf of the corporations and not the people.
If you cannot do this, go into that room and stay there and we’ll get new ones to replace your worthless roles in the life of our country. My father cannot speak for himself. He appointed me to do so for him and I haven’t the slightest doubt he wants me to say this tonight, right now. He mouthed the words to me and I will now give them such voice as I have to you going into that summit tomorrow. Help. Help. Help. Help.