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Commentary: Hoping the Schiavo Case Won't Ruin Americans on Hospice Care

By Jennifer Nagorka, KERA 90.1 commentator

Dallas, TX –

My father was diagnosed with terminal bladder cancer in November 2002. He was 79.

My father and I weren't especially close, but his diagnosis still hit me like a speeding truck. My memories of his final weeks are a blur of emotions and images.

It had been all panic and pain while he was in and out of the hospital. My family gained some measure of peace when he entered a hospice. He had his own room. Nurses didn't barge in at all hours to take his blood pressure or test his blood sugar. He received appropriate pain medication. Employees took time to chat with him. The cook even brought him extra helpings of any dish he liked.

I will be forever grateful that he agreed to hospice care, and forever grateful to the workers who attended him with tenderness and concern. Hospice care made his last days as easy and comfortable as possible.

That's partly why the Terri Schiavo frenzy leaves me distraught. The severely brain-damaged woman is being cared for in a hospice, and if you listen to the politicians and protestors, you'd think hospice care is one step down from the treatment American P.O.W.s received at the Hanoi Hilton. That's a terrible perversion of the truth.

Hospice care is the most humane alternative around for people facing terminal illness. The modern hospice movement arose because so many patients were spending their last days undergoing futile and often painful medical treatments in the sterile, impersonal setting of a hospital. Hospice is a philosophy of care that aims to minimize pain and improve quality of life when further medical intervention is useless. It recognizes the physical, spiritual and emotional needs of dying patients and their loved ones.

While there are actual places set aside as hospices, most people receive hospice care in their homes. About 950,000 Americans received hospice care in 2003. And unlike Terri Schiavo, most were in care for less than a month before they died.

Hospice care allowed my maternal grandmother to spend her final weeks at home with her husband of 70 years. Nurses visited frequently, and her children and grandchildren rotated through to take care of housework. She died in a hospital bed in her living room.

My father died at an in-patient hospice in a Denver suburb. After his crowded, noisy semi-private hospital room, the quiet hospice felt like heaven. He regained strength and started eating well. I began to wonder if his diagnosis had been wrong.

About a week before Christmas, he had a stroke. Because he was in hospice care, there was no life-prolonging intervention. He died four days later.

Hospice care doesn't erase the agony of losing a loved one. When my family discussed the hospice option with my father, we had to tell him there was no hope. And even in the hospice, it was harder than I'd ever imagined to just wait for death. But the alternatives to hospice care were worse.

I hope the Schiavo case won't make Americans avoid hospice care. Her nightmare is the result of bitterly feuding family members, not the kind of care she receives. To me, hospice care provides refuge during a difficult ordeal, a space where you can just be with the loved one you're about to lose.


Jennifer Nagorka is a writer from Dallas. If you have opinions or rebuttals about this commentary, call (214) 740-9338 or email us.