"Your father is very sick. He's going to die, and there's nothing you can do about it."
This was the call from the physician's assistant at Dad's nursing home.
My father, age 89, had severe dementia, and although he did not have a living will, at the onset of his decline, he agreed to give my brother and me power of attorney (POA). If you designate someone as POA, you remain fully in charge of your affairs. A POA cannot act without your consent, or you can countermand any decision. It does mean if you become incompetent-for physical or cognitive reasons-you POA can make decisions for you.
As POAs, my brother and I had decided on an advance directive, Do Not Resuscitate (DNR).
So when the physician's assistant called and displayed her bad beside manner, "there's nothing you can do about it," it seemed clear that we should just let Dad die.
Or should we?
DNR typically means don't resuscitate if a person undergoes cardiac or respiratory arrest, and medical intervention would mean only a brief, temporary prolongation of life.
Conversely, the advance directive, Full Code, means that if your heart or breathing stops, the medical staff will do everything they can to start your heart or your breathing-CPR, defibrillators, ventilators, IVs, feeding tubes. This is very expensive, and the chances of success when you're frail and old are slim. Even if they resuscitate successfully, you will likely wake up to a further diminished quality of life.
When I arrived at the nursing home, Dad was lying in his bed, breathing weakly, hooked up to an IV. The doctor came by, and examined him.
"Is he going to die like your assistant said?
"Hard to say. I've seen these old guys hang on for a while."
"What should we do?"
"Well, if you leave him here, he will die."
"So the hospital, then?"
"He'll live longer there, but recovery? I don't know," meaning, I doubt it.
I call my brother, and we opt for the hospital.
We wondered whether we were going back on our directive not to resuscitate. Who knows where to draw the line? It wasn't like he had a heart attack. We weren't calling in the defibrillator infantry with the EMT cavalry close behind. Dad was just very, very-acutely as opposed to chronically-sick, and we were giving him a chance to get well-or as well as he could get.
Questions about Dad's expected quality of life also crept in. Although he had severe dementia, he still enjoyed a good meal, liked to sing, and even could be found reading his collection of large print Reader's Digests.
I know you're not supposed to consider how good a life someone will have if they survive a medical crisis, but it's inevitable that such thoughts become part of the decision making.
At the hospital, Dad was not wheeled directly up to a hospital room but into a cubicle in the emergency room. He lay there in his cubicle for hours. The nurse told me they're waiting for a room, but I wonder if they're waiting to see if he'll live long enough to be worth a room. We were already running up the hospital expense meter, much more expensive than if we had left him in the nursing home, where he was hooked up to only one IV. Here there's the IV, plus various monitoring devices. The emergency room is high on tech and low on amenities. Behind his cot, I can watch a screen with real-time readouts of his heart rate, his breathing, his temperature-all up-and-down lines, no flat ones.
I walked over to the nursing station-banks of more monitors; somewhere there's one for Dad.
I ask the nurse, "How's he doing?"
"We're waiting for the attending to examine him."
I waited around for the attending-that is, the resident. As I was finishing off the New York Times crossword puzzle he showed up, read the chart, looked at the monitor, did some laying of hands, and said there would be a room soon. He also called in the cavalry-the kidney guy, the pulmonary guy, the cardiac guy. As yet, he doesn't have much to tell me much except that Dad's not dead. I've noticed that too. It's okay to go home. They had my cell number, and I'm only ten minutes away.
At home, there was something else waiting. Our thirteen-year-old dog, Aurora, can't stand up and get out of her doghouse. Aurora had been acting funny the past week-her head in a definite tilt following a fall on the stairs a few days before although, as with humans, we can't be sure whether the fall caused the head tilt or whether something underlying the head tilt caused the fall. But now she can't move, staring helplessly at nothing. My wife and I carry her to the car and drive her to the twenty-four-hour veterinary hospital. Aurora survives the night but the vet says long-term survival is unlikely. We could spend thousands to explore and operate, but Aurora is an old dog. Would she even survive the invasive diagnosis-let alone any possible cures? Linda gives me this grim update while I'm sitting next to Dad in his hospital room. With him, it's almost a miracle. He is sitting up and taking a bit of nourishment.
On the canine front, we euthanize Aurora. My wife gets that pleasure. I'm concentrating on the human, for now the easier task, sitting by my father watching TV, reading the paper, allowing solicitous nurses to bring me a cup of coffee. It's Linda who gets to sit at the vet hospital as they give our poor, frail puppy-once a fierce beast-the needle, the executioner vet looking Linda in the eye, "You're doing the right thing," as she's bawling her eyes out, my older son, eleven years old just outside the room alone for the minutes doing the same.
The calculus of euthanasia appears simpler for animals. Putting them out of their misery seems as right for a dog as it is wrong for a human.
And my father takes a turn for the worse too-delirium on top of dementia-as he is no longer sitting up and taking nourishment, but lapsing into non-responsiveness. Now we're hearing that his chances are between slim and none.
Slim meant a feeding tube. Surgically, you insert a tube through an abdominal incision. Once the tube is in place, you insert gruel at the outside end and it slides right into the stomach- no tasting, no swallowing, no mastication, no savoring. This can be a lifesaver for alert and oriented cancer patients or for people with damaged or missing jaws or esophagi. In my father's case- compromised more in mind than in body- he would likely try to pull out the tube if he were awake. Very bloody, so he would be sedated and physically restrained. Sedated, restrained, with food inserted directly into the stomach. Nice life, eh?
And there's this catch. Had my brother and I agreed to insert the tube, it would have been hell to take it out. The medical-ethical logic is that it's okay not to initiate a life-sustaining procedure, but once you proactively sustain a life, to unsustain it-to remove a feeding tube-would be illegal physician-assisted suicide. Faced with this dilemma it's no wonder there is the occasional case of a husband literally pulling the plug on a lingering wife, or the more grisly murder suicide. So in the end we opted for no chance, no feeding, over slim chance, feeding tube, with the doctors assuring us that starving to death is painless, as they say it is for lobsters in the boiling water.
For my mother, the choice was easier. There was no choice. In full command of her faculties, she collapsed and died within a few hours at age 84.
But for my father, my brother and I were his own private "death panel."
And that's the way it usually goes. Do Not Resucitate or Full Code sound pretty simple. Either you revive someone in arrest, or not. But life more often happens in shades of grey-as it did for my father. As it likely will for you.
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This post is partly adapted from my book, Nasty, Brutish, and Long: Adventures in Old Age and the World of Eldercare (Avery/Penguin, 2009).
