Sandy

On treating people worse than dogs

This one will be about death again—see here for a basic overview of withdrawal of care in general—and may or may not plant the cold hard seeds of incipient misanthropy deep within your soul. The bitterness has a purpose; I am making none of this up. It happens—pretty routinely—everywhere.

We used to have a dog named Sandy, a sweet lab-chow mix with none of the infamous chow temperament. She was adult when we got her—her last owners couldn’t keep her any longer—and she lived for a long, long time. Long enough to get decrepit, and then somewhere past decrepit, such that she spent her whole day lying on beds, staggering upright just long enough to make it out the dog door once or twice a day and then staggering back in. Eventually she got bad enough that she couldn’t even do that much, and simply lay there hurting and feeling exhausted. We took her in to the vet, who put her to sleep amid much lamenting from my mother and I. He peeled off his gloves and absolutely growled “my condolences” on his way out the door as we cried over the miserable carcass.

I understood why after a little thought; we had not been responsible dog owners, to leave it so long. Sandy was a dog, not a human. She could not lie on her cushion reading a little doggie copy of Marcus Aurelius’s Meditations, making sense of her suffering and possessing dignity in spite of it. All she could do is suffer, endlessly, until we got up the courage to make it end. We were allowing our fond memories of Sandy to blind us to her present situation, and keeping her alive out of a reluctance to end a story that had run out of point several chapters back.

When our other dog, Katie (whom I had personally raised and trained from a puppy) got old in turn, and came down with the first signs of incurable degenerative disease, we told the vet to put her down promptly, to prevent a repeat. Katie died in our arms, and the vet sent us a very kind card assuring us we had made the right choice.

This post will not argue in favor of euthanasia—that is, of taking active steps to terminate human life¹. This is a post about those instances when euthanasia is frankly unnecessary, when all you have to do is stop slapping the grim reaper’s knuckles every time he comes reaching, but you don’t, and it only ends when some force majeure prevents you from carrying on the farce any longer.

I knew a human Sandy, a sweet hunchbacked old COPDer who would call for PRN breathing treatments and express absolutely overwhelming gratitude every time I showed up. I counted during one such visit, and she thanked me five times before I even turned on the flow. Mrs. Sandy was devoutly religious, of the type which grows offended when palliative or hospice care is suggested; it would be an offense to God to give up on life. This strikes me as dubious theology, but no matter. It was her right and her choice—until it wasn’t.

She got sick. She got very sick. She got the kind of sick that’s on the ventilator on four or five “pressor” drugs, fighting like mad to keep her blood pressure up so her heart keeps pumping blood to her vital organs. At these doses, pressors are often a double-edged sword; they constrict blood vessels to squeeze the blood harder, which is great for the core of the body, but the periphery, where the vessels are smaller, can squeeze a little too tight. So Mrs. Sandy, like many such patients, had necrosis of the extremities, where her fingers and toes all turned black and the black just slowly worked its way up her arms and legs, permanently killing the flesh along the way. We had no choice about this; if we wanted to keep Mrs. Sandy alive at all, we had to have her extremities rotting alive on the vent.

You might already be thinking that “wanting to keep Mrs. Sandy alive” is a questionable goal. But we’re just getting started.

Mrs. Sandy’s heart was more than usually bad. It was bad enough that, even maxed on pressors, she was dangerously “soft,” as the nurses say. Terrible blood pressure, and unstable to boot. And the drugs that treat pain, relieve anxiety, or knock you unconscious all do things to muck with the heart. Normal patients can take a little of that. Mrs. Sandy was stuck in such a place that she couldn’t. To keep her alive, we had to keep her awake on the ventilator and able to feel pain—of which there was plenty to feel. All the time. She never really stopped shifting and squirming in bed.

The plus side of this, under normal circumstances, is that an awake and conscious patient can express her own wishes and communicate, if only by nodding or shaking her head, that she wishes to be released from this living hell. But somewhere along the way Mrs. Sandy had accumulated enough brain damage or delirium or something that she couldn’t do that either. There was enough of her in there to hurt—you could see that at a glance—but not enough to be a conscious person anymore. In essence, so far as anyone could tell, her life had been reduced to one long nightmare from which she could not wake up and which she did not have the power to understand. All she could do was hurt and squirm. There was no realistic hope of ever getting better.

Not quite done yet! Because the peripheral necrosis evidently wasn’t enough, one day the ICU nurses spotted actual maggots crawling out of Mrs. Sandy’s nose. Of course they squished them, because ew, but on reflection they wondered if they should have, because maggots will eat and thus clean decaying flesh. Yep. Her situation had degraded so far that maggots were an arguable improvement. Doctor did a bronchoscopy, sending a fiber-optic scope down into her lungs to see what’s up, and, uh, there were apparently maggots down there too. I wasn’t there, but that’s what I hear. Apparently the doctor—who had by that point probably done literally a thousand bronchoscopies over the course of his career, and seen all manner of ghastly things—had to stop the bronch because he felt nauseous at the sight of it.

So, that was Mrs. Sandy, the sweet old lady who thanked me for every neb. Her family, in keeping with her beliefs (which they mostly shared²), did not want to hear any talk of discontinuing care and letting her die. But unhappy families, as Mr. Tolstoy assures us, are all different. Mrs. Sandy’s had the peculiar emotional dynamic that her daughter, who legally had the final say in what happened, didn’t really want all this but was going along with it because her uncle was determined to see it through and she didn’t want him to never speak to her again if she buckled. Said uncle also insisted that he had a power of attorney, which he never produced. The daughter visited regularly, he did not.

One day the daughter was at long last overwhelmed by the sight of her mother’s pain and said to hell with him, we’re withdrawing. We hastened to comply, but the uncle got word of it and went into DEFCON 1. He came storming in after we’d already withdrawn, waving an ancient expired POA form like a magic talisman. We told him tough shit. I am very glad I wasn’t there that day, because I understand it got deeply stupid. Some nephew or other rampaged around the ICU literally waving a Bible in random people’s faces, and the uncle told every nurse who would listen that he was going to pray to God to forgive her for the evil she had done that day. I think we got security to show them out eventually.

Now, Mrs. Sandy is an extreme example, the very worst case of familial callousness I have ever seen. I use it as an illustration of how truly stupid it can get³. There’s a whole spectrum of familial iron-assing, usually but not always aided and abetted by offloading responsibility for your inaction onto the deity.

I am willing to tolerate a certain amount of “it is wrong for us to play God” as a simple expression of naivete from people who have not encountered what this looks like in practice, and thus have no visceral appreciation of the endless, meaningless misery entailed⁴. When families like Mrs. Sandy’s cling to it in spite of such direct experience, I interpret it as some mixture of a cowardly refusal to accept responsibility and derangement in the face of grief.

Suppose you are a doctor living in an authoritarian society. The dictator calls you up one day and asks you to come save this patient. You show up and find a man with burn marks everywhere; when you ask how he got them, you are told that the man had gravely offended El Presidente and had to be taught a lesson. You are here to patch him up so that the secret police can resume torturing him, which they plan to do for as long as they can. Everything is on the table, and you will be given all the resources you need; if he needs a blood transfusion after a beating, you’ll be given blood, etc.

Under these circumstances, I think most people would agree that it is the doctor’s duty to refuse, because keeping this patient alive is complicity in a deep evil. But if the torture happens automatically, as a result of the patient’s own condition, the logic flips, because, I suppose, we conceive of God as the torturer? Is that it? What if nobody is the torturer? What if pain and darkness are the simple consequences of living in a fallen world, and letting dying people die is not lack of faith but a humble recognition of that truth? Or are you waiting for a literal miracle? Surely you don’t doubt that God can raise the dead as well, and will in the end? What do you suppose it is that makes delaying the point of painful decision for as long as possible a sign of faith?

There are multiple offramps on the way to Mrs. Sandy’s scenario. Palliative is there to tell you where those ramps are. They are not allowed, nor theologically or philosophically equipped, to tell you which ramp to take. If you believe that the creator of the universe insists on playing tug-of-war with your loved one’s body, and becomes indignant when you give up at any point shy of utter exhaustion, it is not their place to tell you otherwise.

But we will all be thinking it. A nurse once told me of a family who couldn’t make up their mind; they kept making the patient DNR, only to change their minds in a mad panic every time she started to decline, saying they wanted everything done. Lots of CPR, lots of drugs, lots of interventions. After one long night, they made the mistake of telling the nurse, as many families do, “We figure that God will take her from us when He’s good and ready.”

At which point the exhausted nurse, out of tact and patience, screamed “GOD TRIED!”

1. I have seen enough evil to feel confident that there are many families out there just waiting to pressure granny into swilling hemlock so they can move into her house. Or other, similarly skeevy scenarios. We sin enough just stopping them from dying, without having the power to kill them outright.

2. As a regular churchgoer myself, albeit of a different denomination, I am always frustrated by people who seem determined to conform to the ugliest possible stereotypes about blinkered and unreasoning religious zealots. There’s a Yiddish name for this—they don’t want you to be a shanda fur die goyim, “a disgrace before the nations.” This can mean a couple of things but basically boils down to, “we Jews get judged enough by people who believe in insane antisemitic canards without you appearing to confirm them by personally being a crook or a creep.” I know their individual beliefs are not formed on my account, but is it too much to ask that families stop being a shanda fur die Dawkins?

3. Though it doesn’t tick some bingo spaces, such as when a family member threatens bodily harm to staff. That happens too.

4. To say nothing of the expense, which gets offloaded onto insurance and thus onto somebody else’s pocketbook one way or another. The doctor says this is hopeless, you don’t contest that, but you’re still going to keep it up at other people’s expense, because why not? Sometimes, when insurance covers everything—or you think it will—every question about goals of care gets auto-translated inside your head to “how much do you love Uncle Bob?” To which the answer, of course, is always “thiiiiiiiiiiiiiiis much!”

There’s a libertarian lesson here about market discipline and prices and limited resources and suchlike, but much of the time it’s also about families who haven’t been keeping in touch over the years, don’t have as many happy memories with Uncle Bob as they feel they should, and want to buy absolution from personal guilt; they’ve been through hard times, but when push comes to shove they’re a family, dammit, and that means … telling the doctor no while actually visiting at longer and longer intervals for shorter and shorter periods (because there’s no point, since he doesn’t do anything), and possibly not answering our phone calls anymore.

Meanwhile families who have healthy loving relationships with the patient are significantly more likely to withdraw earlier, because they’re in there looking at Uncle Bob with his head shaved and full of tubes and wires in all sorts of undignified places, and they hate having their happy memories of Uncle Bob golfing, gardening, playing cards with grandkids, etc., replaced by this ghastly spectacle. If they can’t get their Uncle Bob back to joking at his golf course like he wanted, they’re going to let him go and blot out the disgrace. All they ask is that you hold on long enough for cousin John to fly in from Nebraska so he can say goodbye. Which is fine.