In keeping with my weekend post, as well as yesterdays, the following article appears today in the New York Times. The idea of choice, and who gets to make it, looms large in health care, most particularly where chronic disease is at play.
New York Times
January 26, 2010
An Ill Father, a Life-or-Death Decision
By ALICIA von STAMWITZ
I am utterly spent by the time my father lands in the emergency room, shortly after 1 a.m. on a cold January night.
We have been through the drill so many times that when the nursing home calls to tell me the ambulance just left, I do not even bother to phone my siblings, who live in other states. I leave a note on the kitchen counter for my teenage children, grab the small bag I’ve already packed for these occasions and speed to the hospital on quiet streets.
In the E.R., I greet my father with a kiss. He is propped in a sitting position on the gurney, struggling to breathe. His eyes are closed and he does not respond to my voice or presence, but I take his hand in mine as I position myself opposite the medical team. I answer their questions in the clipped shorthand I know they prefer, eliminating pronouns and adjectives.
“Sixty-nine years old.”
“Yes, two open-heart surgeries.”
“No, can’t speak much since his last stroke, but his mind is fine.”
The doctor does not cut me off, so I add: “His liver is also shot, but that’s not because of the drinking only. It’s because he really tried to beat the bipolar illness and faithfully took his lithium.”
The doctor explains what I already know: my father’s heart is weak, his kidneys are failing and his lungs are filling with fluid. For the second time in six months, he needs to have a tube inserted in his windpipe.
I nod, waiting for him to continue listing procedures and tests. Instead, he takes a small step back from the gurney and asks, “Does your father have a living will?”
I freeze. No emergency room doctor has asked me this before. I answer, evenly, yes. “Do you have durable power of attorney?” Yes.
Visibly relieved, he looks me in the eye and gently but pointedly asks: “Does your father want us to employ extreme measures” — he pauses one heartbeat for emphasis — “knowing that he is not likely to improve?”
The two nurses flanking the doctor look at me kindly.
I smother my rising panic. I must stay calm. I need to think. The doctor has given us an opening, a chance to consider our options.
I know what I want: I want to stop the insane cycle of hospitalizations and heroic life-saving treatments. It is not helping my father. He is getting sicker. He is dying. And I am exhausted beyond belief. I have no energy for family or friends, and my career has suffered. I want my life back.
I am acutely tempted to answer, “Of course not — my father would not want heroic measures.” But I hesitate because I know it might not be true. In the past, he has wanted everything possible done. This night is different, but I do not know if his answer would be different.
I look at my father. It is hard to tell if he is conscious. No one else is looking at my father. Everyone is watching me closely.
Finally, I say out loud the only thing I know to be true. “In the past, my father has asked that everything possible be done.”
Then I bend over my father and ask him in a clear, strong voice: “Daddy, do you want to be intubated again? Squeeze my hand if you want to be intubated.” I wait, but he does not squeeze. Instead, he surprises us all by nodding his head. He is weak, but the nod is unmistakable.
One nurse grunts and rolls her eyes dramatically. The other mutters, “Oh, brother — here we go again,” and shoves a stainless steel instrument cart closer to the gurney. The doctor, more professional, remains impassive as he suggests I leave the room. “It is difficult to watch this procedure. Most patients struggle and flail, so we will have to use restraints.”
Yes, I know. I kiss my father on the cheek, tell him I will be back soon and head to the waiting room.
What the doctor and nurses do not know, what I hesitate to admit even to myself, is that I almost gave them the answer they wanted: the reasonable one. But I would have been terribly wrong.
My father never really recovered. He could never again breathe without a respirator, he never left the hospital bed, and he eventually needed dialysis and a feeding tube. Six months later he died of heart failure.
I suppose my father’s decision was a mistake. But it was his mistake to make, not mine. My role was to support my father, no matter what, and to tell the truth, no matter how hard.