The day after hip surgery, my father asked me to bring him a frozen coffee and something sweet the next morning. I returned to the hospital with a Frappuccino and a doughnut, one or both of which nearly killed him.
He began choking and then turned white on the way to blue. The fear of death was in his eyes. My mother and sister called for help and three or four nurses arrived along with a doctor.
“Tony!” said the doctor while one nurse searched behind the bed for a suction tube.
She stuck it down my father’s throat and was able to vacuum up whatever was clogging his airway. But this wasn’t the first time he’d nearly choked to death. My sister, Debbie, once had to use the Heimlich maneuver to save him when he began choking at home.
It’s not uncommon, we learned, for chronically ill people who’ve had strokes — like my dad — to experience a deterioration of throat muscles. The condition is called dysphagia, which can make it hard to breathe and can turn the simple act of swallowing into a dangerous adventure. Aspirating even a tiny piece of food into the lungs can cause pneumonia and even death.
Yet another indignity, or, as my mother says to me: “The golden years are not so golden.” She has been left to watch helplessly as her husband of 60-plus years becomes child-like. He needs help walking and getting to the bathroom, and now has to be watched carefully as he eats.
Several weeks ago, my father left the hospital for a nursing home, where they’ve put him on a diet of pureed foods and thickened liquids, but he often refuses to eat, demanding to be taken home and fed the home cooking he’s always loved.
It’s hard to tell him that may never happen, and that his options are increasingly grim. If my dad can’t eat, a feeding tube will be his only choice. Other than giving up the fight.
My mother and sister, who visit my father daily, were devastated by this news. My sister, who has her own medical issues, with ovarian cancer that has metastasized to her brain, was distraught about the idea of our father losing one of the few pleasures he has left.
So what should be done, and who should decide?
We’re certainly going to make sure the options are explained to my dad. Without a feeding tube, he’s likely to die. But, the tube can be uncomfortable and there’s always a possibility of infection or other complications.
We worry, though, that with mild but advancing dementia, my father won’t be able to fully comprehend the implications of being fed through a tube implanted in his gut. And if he declines it, is he competent to make that decision?
Even with advance directives, these kinds of questions aren’t always easy to answer. I checked with my parents’ attorney, who said they had both filled out what’s known as an advance health care directive. I really didn’t know what he would want, but it turns out he checked a box indicating:
“I do not want my life to be prolonged if (1) I have an incurable and irreversible condition that will result in my death within a relatively short time, (2) I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness, or (3) the likely risks and burdens of treatment would outweigh the expected benefits.”
If my father can’t act on those wishes, my mother is listed as the “agent” who can decide for him.
My father hasn’t filled out another kind of directive, known as a POLST (Physicians Orders for Life-Saving Treatment). A POLST can be more specific, providing detailed instructions about ventilators or feeding tubes, say. Unfortunately, those are things our family never had a comprehensive conversation about while he was fully able to consider the alternatives.
That could well leave my mother in the terrible position of having to decide at some point when it’s time to give up. Medical advances now keep people like my father alive in severely debilitated states, at ever-soaring costs to the public. Is that a humane, compassionate approach?
One doctor told me that our fragmented healthcare system has a built-in incentive to give my dad a feeding tube. The surgeon and hospital would get paid, the nursing home would benefit because Medicare would cover 100 more days and my family would be spared that cost. The only losers would be taxpayers, and maybe even my father, who has already been cut open, probed and filled with buckets of medication, only to become sicker, angrier and more depressed.
Now he has a new hip but can barely walk. He loves food but can’t eat. On the wall of his room is a sign instructing him how to swallow.
He’s clearly close to the end, and yet there was a smile on his face at Thanksgiving. He hugged my daughter and still remembers things that make us a family. My brother, John, says it should be about our father’s dignity now.
“No more surgeries. No more suffering. No more 300 pills a month. No more yelling. No more physical therapy. No more denial.”
My sister cries, but my mother doesn’t. “When I start,” she says, “I’m not going to be able to stop.”
If he were in his right mind, my mother says, my father wouldn’t want a feeding tube.
“Maybe the dear Lord will take him,” she told me recently, “and we won’t have to make any awful decisions.”
Next: A reader’s guide on legal and medical considerations in making end-of-life decisions. And a look at whether physician-assisted suicide might ever be legal in California.