My father can't eat. He can't keep anything down. A sip of water, a bite of bread. Even an ice cube pressed to his lips makes him gag violently. But the doctors don't know what's causing his terrible nausea. They claim it's not the cancerous tumor in his kidney.
When my father got sick, we entered HMO Hell.
My parents had just moved from New York to Florida when my father got sick. He began to lose weight and feel nauseous. A few weeks later, the doctors discovered tumors in his thymoma gland and in his kidney. They operated on the thymoma. The surgeon insists the operation was a success. My father, meanwhile, has lost 50 pounds in two months. He's wracked by pain and too weak to stand. When we take my dad for a re-check at the surgeon's plush office with its velvet couches and paintings of landscapes in gold ornate frames, the doctor says, "I can't prescribe a pain killer. Only your primary doctor can do that."
The surgeon says my father's eating problems could be stress.
We take my father to the primary doctor. He has known my father for five weeks and claims that my father has a psychological problem. My father, at the age of 74, is anorexic, he says. That's why he's not eating.
My father, whose greatest pleasure was eating. The doctor in his infinite wisdom wants to put him in a psychiatric institute.
The next day, we call the doctor to ask for more tests, a visit to the gastroenterologist. The doctor tells my mother he can't be our doctor because our family "doesn't agree with his diagnosis." Then he hangs up on my mother. Because of HMO policy, we're stuck with this doctor until the end of the month. And my father is dying. The primary doctor notes in his records that "daughter is in denial." He means that I refuse to admit that my father's illness is psychological. He refuses to authorize a visit to the gastroenterologist.
The visiting nurse sent to care for my father at home knows my father is dying. She tells me to take pictures. She says, "See an acupuncturist. The doctors know nothing." She weighs him. He's lost 50 pounds. He weighs less than I do. "If he's in the hospital, bring a photograph so they can see him as a person."
My father almost always stayed away from doctors. In fact, he stayed away from most authority. He was an aging beach bum, who played tennis, took saunas and told jokes. But now he needs someone to save him.
After horrible days of vomiting up nothing, gagging violently, shuddering and spasms, they admit him to the hospital. They strip him and the nurse shoves in an anti-nausea suppository. The waste basket is filled to overflowing with plastic gloves. The phone on the night table doesn't stretch far enough for my father to pick up the phone, as if the hospital is afraid someone will take the cord and strangle themselves.
The hospital in Boca Raton is a wasteland. Patients are left to call for nurses who may or may not come. Doctors check in for 30 seconds of diagnosis. My father's roommate wets himself and has to wait an hour to be changed.
My father refuses an MRI test that will put him in a nuclear tunnel for two hours. My father is a man who relished his freedom, who had to live where he could smell the ocean air. He always slept with the windows open. He is marked down for "non-compliance."
My mother and I don't know what to do. My father is wasting away. We're advised to sign an "authorization for diagnostic procedure" to have a feeding tube inserted.
The doctors have no time to answer our questions. The gastroenterologist says he has one minute to speak with us. Later my sister, a lawyer, calls him from NY. "I only speak to one family member," he tells her and then hangs up on her. That night he calls her back: "This is the good doctor, not the evil one you spoke to earlier." Perhaps, upon reflection, he's afraid of a legal suit?
The medical ethicist, the woman in charge of living wills comes in. My father has a living will from New York but she wants him to sign a living will from Florida. The living will tells the physicians not to take extreme measures. My father is doped up from a test done earlier that morning. "Sign here," she says. His handwriting is barely legible.
The head medical nurse arrives to help us make the feeding tube decision. "Tough love," she says. "Sometimes it's hard to do the right thing. But you don't have to put the tube in. Liver cancer isn't something you can fight."
"He doesn't have liver cancer," I say. "Didn't you read his chart?"
"No," she admits. After reading the charts she changes her mind about the feeding tube. "Maybe you should have it inserted."
My mother and I don't want to have the tube put in. But the doctors say that it will give my father a chance. My sister says that starving to death takes months and is a horrible death.
My father has a feeding tube inserted. The GI says it will take about 20 minutes to insert, a procedure. Four hours after my father is wheeled away, my mom and I are still waiting. I walk into the operating room just as they wheel my father out on a stretcher. "We needed the radiologist to insert the tube. It was more complicated than we thought it would be." When we ask to talk to the doctor, the nurse says simply: "He's gone."
That night, he tries to pull out the feeding tube. "Please give me some air," he moans.
But the windows don't open and there's no place to get light or air. Before we leave that night, my father grabs my mother's hand. "Get in the bed," he says in desperation. "You stay here overnight, and I'll go home."
My mother has a recurring nightmare. She has murdered somebody and now they are after her. The authorities.
My father has many doctors: an oncologist, a gastroenterologist, an intern and they're all prescribing. They're the generals, away from the front. They don't want to get too close, reveal their lack of a coherent strategy.
My father sometimes doesn't know where he is. He says he doesn't have cancer. The doctor says he's delusional. I'm reminded of RD Laing's statement: Madness is a sane reaction to an insane world.
I'm weary, worn out, says my father. I want to die. I want him to, too.
At the pool at my mother's condo I meet people who tell me death is a beautiful thing. There's a man who was hit by lightning and returned to life and said it was wonderful being dead.
They tell me to tell my father that I love him and that he did a good job and that it's time to let go.
Before I leave for New York, I go to the hospital for the last time. I tell my father that I love him, that he did a good job, that it's okay to let go. I hug him. He is worried about me missing my plane. My father says: Don't be late for your plane. He tells me to hurry -- that I'm going to miss it.
My father calls us in the middle of the night to come pick him up and take him home.
I leave for New York. A few weeks later, my father is put in a hospice. He is too tired to speak on the phone. My mother stays at his side. When she leaves for a few hours to change her clothes, he dies.
After the funeral my mother shows me an ad she's ripped out of a Florida "Pennysaver." My father's surgeon has an advertisement in it: Get rid of those unsightly varicose veins, spider veins, and broken capillaries: Make yourself beautiful in your bikini this summer. There is a smiling picture of my father's surgeon.
I wish I could have taken my father to an island to die. I wish I could have let him sit at the shore with the waves lapping at his feet. I wish the sound of the waves would have lulled him to sleep.