Compassion and Choices ? A father's last days

By Steve Lopez
Los Angeles Times
February 18, 2012

The hospice nurse said on Tuesday that my father could be gone within 24 hours. It was no surprise. He?d been bedridden for days, and on the list of 10 signs that death is near, he had six or seven.

And so I headed north, to the Bay Area, to be with my family. And it?s true what they say ? that even if you prepare yourself for the inevitable, and know there?ll be mercy in death, the imminent loss of a loved one crushes you in ways you don?t anticipate.

My father lay in a hospital bed in a bedroom of the house I grew up in, sleeping on his side, clutching the rails as if holding on against the tug of death. Losing him forever had been no more than a concept until this moment. Now I was watching him die, and the family photos on the wall spoke both of our memories and our mortality.

His arms trembled, his breathing jumped and fell. He?d open his eyes briefly, halfway acknowledge us, then drop back into deep sleep.

By chance, I had been at Cedars-Sinai Medical Center on Tuesday when my father took this latest turn. I was sharing my family?s experience at a meeting of the hospital?s End of Life committee. The medical staff is searching for ways to better help families make hard decisions, limit patient suffering and avoid costly medical procedures that extend dying more than they prolong life.

?There?s a fair amount of unnecessary and inappropriate end-of-life care that?s given,? said Dr. Glenn Braunstein, who heads the committee and thinks doctors need to have earlier, frank conversations with families about the limits of medicine, and about the need for patients to put their end-of-life wishes down on paper.

Dr. Beth Karlan, a Cedars oncologist, said she sometimes advises terminally ill patients to enjoy their remaining days doing what they really want to do, rather than subject themselves to some chemo regimens with a 10% success rate and severely limiting side effects.

Last week, a California HealthCare Foundation poll suggested that 82% of Californians think they should make their wishes known in advance, but fewer than 25% have done so. Nearly 80% said that if they were seriously ill, they?d want to talk to their doctors about end-of-life care, but fewer than 10% do.

We?re just not very good at the messy business of dying. But as I mentioned to the doctors at Cedars, there are times when dying can get complicated. Should my dad, 83, have had hip surgery last year after falling down in the street, toppling over with his walker and pulling my mother, 82, down with him?

This was a man who had been suffering from strokes and heart disease for two years. His world was closing in on him; he was unable to do the things he loved most, like taking family vacations.

At Cedars, a doctor on the committee suggested I shouldn?t have approved the hip surgery. It?s that kind of procedure that?s driving up medical costs without necessarily producing good outcomes, he said.

He may be right, and I?ve second-guessed that decision, because my dad couldn?t walk very well before the surgery and has taken only a few steps since. But the alternative was to let him die in a hospital bed with a splintered joint, drugged into oblivion to kill the pain. The family decision was surgery.

Later, when he could no longer swallow without choking, my father and the rest of us decided against the doctor-recommended feeding tube. Too expensive, too invasive, too little to gain. And he left the nursing home to spend his final days in his own house.

It was hard on my mother and sister, the primary caregivers, with backup from my brother. Hospice staff isn?t always there, and hiring backup help is both expensive and at times intrusive. I?ll never know how my mother and sister, who have their own health problems, handled the daily task of moving my father from bed to wheelchair to bathroom, determined to grant him his last wish ? to die at home.

?Watching him die is torture,? said my sister, who had been looking into his ghostly eyes for days, hopes raised by a sudden surge and then dashed as he fell back into a near comatose state.

A doctor at Cedars, Lawrence Maldonado, had told me on Tuesday that our cultural fear of death often keeps us at a distance from the process of dying ? it?s easy enough to let the nursing home handle it. But there?s something powerful and life-affirming in facing down those fears, despite the heart-wrenching difficulty my sister described.

She and my mother have never been braver as they comforted my father at every turn, gently repositioning him in bed, dabbing at his parched lips with a sponge, cleaning him, talking to him, singing to him, thanking him, holding his hand.

?Hey Tony,? my mother would say, ?remember when?? And then she?d tell stories. Remember when they were high school sweethearts, sneaking off to the movie theater to hug and kiss in the dark?

My brother had suggested it might be time for me to write our father?s obituary for the local paper, but I?d been putting it off. I?ve been writing newspaper stories for nearly 40 years, many of them about death, but I felt I wouldn?t know how to begin this one, or do the subject justice.

My father was the youngest of six children born to Spanish immigrants, a scrapper, a fighter, an athlete, the last surviving member of the brood. He could be stubborn at times, and difficult. But the blue-collar working man stayed with that high school sweetheart for 63 years, provided for his family, and unconditionally loved his children and grandchildren.

Twenty-four hours came and went, with my father still breathing. At times he acknowledged us and whispered a few words. He survived a second day, and then a third. The doctor came to the house and said it wouldn?t be much longer.

My dad, as I wrote this, still had a hand on the rails, but he was beginning to let go.

Source: http://blog.compassionandchoices.org/?p=2143

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