Course for dying at home not well charted

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EDITOR’S NOTE: The debate over the right-to-die issue has been fueled by activists such as Dr. Jack Kevorkian, the “suicide doctor,” and Derek Humphry, author of “Final Exit,” a suicide handbook for the terminally ill. Polls show that a majority of Americans favor having some control over how they die. The experience of one reporter and her dying husband shows what they have to fear.

NEW YORK — Christmas Day, 1990: There was a standoff on the phone as my dying husband grimaced in pain. He needed more morphine.

I called the hospital, but everyone I knew was off for the holiday. The doctor in charge was reluctant.

“How much is he getting now?” he asked. I could hear him thumbing through Paul’s hospital charts.

I told him. There was silence on the line.

“That’s a lethal dose,” he said.

My reply was unprintable. Paul had been on that dose for two days.

In the movies, bad guys die violently, good guys die peacefully in their sleep. Real life is not so kind.

It took 10 days for Paul to die at home after his doctors discharged him, finally admitting what they had denied for months: They had failed to stop the cancer that began in his esophagus and spread to his stomach.

Ten days of vomiting up bloody bile into a cleaning bucket hour after hour. Ten days of sitting propped up on a bed, unable to lie down, unable to eat, wrapped in diapers. Ten days of waiting for the next hit of morphine.

Ten days — an eternity — of seeing the pain of his impending death reflected in our eyes.

Paul died this way because I did not have the heart to smother him, a gun to give him or sleeping pills that he could keep down. I had nothing to help me help him die, and I was afraid of being charged with murder or losing custody of my 2 1/2-year-old daughter.

Despite being raised a Catholic, I believed in mercy killing and had felt that Karen Ann Quinlan’s family had the right to take her off life support systems. My mother, a health care lawyer, had helped us write up a living will for Paul that instructed doctors not to needlessly prolong his life.

But that was all in theory. Few 32-year-olds think hard about death.

Frantic on that Christmas Day, I called a nurse who helped me increase the flow of morphine into Paul’s body through his home-care pump.

Relief flooded Paul’s features. His last 24 hours were now bearable.

The doctor called back later to permit a higher dosage.

Past the pain, we still faced the home stretch. Like thousands of others before us, we had traveled through the five stages of death so aptly defined by Dr. Elisabeth Kubler-Ross: denial, anger, bargaining, depression, acceptance. To her list we would add another: exhaustion. Paul was exhausted with living, and I was exhausted with the crisis of his death.

It didn’t start out this way. Nine months earlier, when doctors found a little lump in Paul’s esophagus, they told us to think of it as “a nuisance.” They promised he would be back to work by September.

Only 39 and a former world-class rower, Paul was seen as a perfect candidate to beat the rap, to show off their latest cancer-fighting techniques.

We viewed his treatment as a summer off, a chance to play in the sun with our child, a solution to his recent susceptibility to the flu. We walked into a nightmare like we were going to a picnic.

We ended up deeply angry at the medical community for not even mentioning the most likely scenario, that Paul might have a year or less to live.

But the journey that bruised us also brought us grace. It’s impossible to ignore the power of love when you are tested so harshly.

The first inkling I had that our lives had spun out of control was in early November, when I handed the living will to doctors on Paul’s hospital floor.

One shook, and tried not to cry. When I pressed, he said Paul, with his strong heart and lungs, could possibly live 30 years or more on life support. He was shaking with relief that I had done the right thing.

After nearly three months in the hospital, Paul’s brother and I brought him home in an ambulance on Monday, Dec. 17, 1990.

The week before had been traumatic. I heard from the nurses, not the doctors, that Paul was being released. Our one-bedroom apartment in Hoboken, N.J., had to be readied, a hospital bed ordered, furniture moved out. Medical supply trucks arrived daily, filling the refrigerator with bags of morphine and intravenous liquid nutrition.

The living room overflowed with boxes of needles, syringes and plastic tubing. Friends sent over inflatable mattresses for visiting relatives to sleep on.

Paul was happy to be home but frightened by a new routine, glad to see loved ones but horrified by the realization that this time the goodbyes would be permanent.

Hardest of all was sending our daughter away.

“Remember, Daddy loves you,” Paul said softly as he kissed our Kelly goodbye. Eager for Christmas, she skipped off to the taxi holding her grandmother’s hand.

A home nurse came. She was kind, she was quiet, but she knew nothing of the liquid nutrition that Paul depended on each day, and having a stranger in our tiny apartment was too much for me. We asked her not to come back.

A routine of sorts developed, aided by Paul’s relatives and mine. Then the next plague struck. Paul’s legs, swelled to elephantine proportions by kidney failure, began leaking fluid. Sweat dripped from every pore in his legs. By Christmas Day it turned into a torrent.

No laundromats were open that day in Hoboken, and friends who had washing machines were out of town. After an hour, the sheets and bedding were soaked and Paul shivered from the cold.

We cranked up the heat and changed the bedding.

First he went through four sets of sheets. Then the blankets. Then the towels. Then anything — like sweat shirts — that resembled a towel. Then cotton T-shirts. A pile of laundry — sodden and smelling of decay — bloomed in the corner.

I lost it in the kitchen.

“I can’t take this anymore!” I railed at my younger brother. “I don’t want him to die but I can’t take this anymore!”

My brother stood mute. To this day we have not spoken of that time.

My parents called Christmas night. Mom wanted to know how things were, Dad was full of a new proposal: We should fly to their house in Rochester, N.Y., where he would hire a nurse and we could all be together.

Paul had been stricken in the prime of his life, and they worried that his death could take months.

It would not.

As we sat together that night, Paul asked if the doctors had given me a pill for him. I said no. He wished out-loud for the handgun he had bought illegally in Chinatown for a friend last year. I said I could not take the sight of him that way.

“Don’t worry, Ducky,” he promised. “It will be tonight. I know it.”

We talked about me smothering him with a pillow. But we rejected it, as we had years before when his mother was dying from cancer. Paul was afraid of punching me in panic as he scrambled for air.

I was afraid of the law. An autopsy was planned to determine whether Paul’s cancer was genetic or related to work he did as a graduate physics student at a nuclear plant. Smothering could easily be found out and mercy killers were being vigorously prosecuted.

It was time for bed, time for me to hook Paul up to the bag of liquid food that kept him alive.

“Don’t do it,” he said.

Death by dehydration is not a choice people would make if they had choices. Morphine took care of the pain, but Paul soon became restless, delirious, confused. His vomiting turned into dry heaves. The night dragged on, neither of us slept.

Morning came, Paul was still alive, still on the dose of morphine the doctor called lethal. But his pallor was ashen, his skin drawn.

“I’m so tired, Ducky, I need to lie down,” he said.

I reached for his chest to move him, my brother lifted his legs. Then it happened: Paul was rocked by convulsions that nearly knocked all of us to the floor. When it was over, my husband of 10 1/2 years was dead.

Six months later, Derek Humphry’s “Final Exit,” a how-to-die handbook for the terminally ill, was published. It went on to become a best seller.

I cried when I heard about it.