Courageous Life Ending That Way : Hospice Means Care and Dignity in Final Days

Helynn Hoffa remembers the day when Franklin Roosevelt asked her what she wanted to be when she grew up.

“Oh, I don’t know,” replied Hoffa, a 12-year-old at the time. They were talking at Warm Springs, the Georgia sanatorium that FDR had established for fellow polio victims.

“He said, ‘If I can be elected president of the greatest country in the world, you can do anything you want,’ ” Hoffa recalls.

So, in the years since, every time someone looked at her wheelchair and told Hoffa she couldn’t do something, her response was, “Well, then I’ll get elected president.”

“And, really, I think it’s good advice,” this La Jolla resident says with a characteristic twinkle in her eye. “I think it’s practical. I’m not a daydreamer. I don’t try for the impossible. But I think you can darn well do the improbable.”

Such statements have added impact when Hoffa makes them, for these days she is fighting perhaps her last battle against the improbable. The polio that crippled her as a child, and whose legacy she successfully ignored until three years ago, is once again shutting down her muscles.

The condition, called post-polio syndrome, means she can no longer hold up her head. Sixteen hours a day, she must lie immobile inside an iron lung because her lungs no longer can exhale completely. She wonders if once again she’ll be unable even to open and close her own eyelids.

And, the ultimate irony, she has lived too long for a medical care and insurance system that expected her to die long ago. A year ago, insurance payments ended for the hospice care she has relied on since a doctor told her she had three months to live. That was three years ago.

So, her personal triumph--and that of others kept alive by technology and their own will to live--also presents a dilemma for San Diego Hospice. The program for easing the physical and emotional pain of dying has been seeing an increasing number of patients who cannot pay for their care, said Laura Blaney, public affairs coordinator for the hospice program.

Blaney said most are uninsured or have insurance with no hospice benefits, but a few are like Hoffa--they live longer than their insurance coverage lasts.

Last October, for the first time, San Diego Hospice established a waiting list for nonpaying patients. It simply no longer was fiscally possible to accept everyone, Blaney said. Previously, up to 47% of the patients it cared for could not pay for some or all of their care, she said.

For established patients such as Hoffa, hospice care continues even if their funding runs out.

“Your disease might terminate you, but hospice won’t,” Hoffa offers.

But for others whose names are put on a waiting list, it can mean dying without ever getting the social and medical services that hospice offers. That happened to four patients last year, Blaney said.

To help keep the waiting list to a minimum, the hospice program has established a “Sponsor a Life” program, in which donations are being sought to pay for care for unfunded patients. The money will augment $20,000 donated by the Parker Foundation of La Jolla. The grant is contingent on hospice raising an equal amount by May 31.

The more money donated to Sponsor a Life, the shorter the waiting list will be, Blaney said. If the funding goal is reached, it would support care this year for 10 patients a month.

Emotional Support

During a break from the iron lung, Hoffa explained recently how important the hospice program is to a terminally ill person.

She has relied on it for visits from a nurse, help in dealing with government agencies, emotional support, and a once-a-week aide who gives her live-in helper and companion, Wilma Lusk, a day off.

“Hospice provides a service that you can’t really put into words unless you need it,” Hoffa said. “If I was spending my time now in a nursing home, I wouldn’t be doing the things I’m doing, I’d be scared to death. As it is, I’m home and I realize death comes to everybody, so it doesn’t frighten me.

“It really makes the quality of life the important thing--it’s not how long you live, it’s how you live.”

As she speaks, Hoffa is reclining on a narrow platform that has been pulled from one end of the iron lung, opening it up like a cylindrical matchbox. She is tiny inside the huge machine she calls her “yellow submarine.” It occupies space that in another living room would be held by a rather long sofa.

Hoffa cannot move most of her body, yet there is great energy in the air here. Her head resting on a fist, she shows with the wit of her words and the animation in her eyes the force of a personality that has defied many a doctor’s death sentence.

“I honestly believe that you can prolong your life, no matter what anyone else says, by sheer will, by being positive, by planning ahead,” she said. “I think, if you have something to look forward to, a goal, you will reach it. I always plan ahead.”

So, the 8-year-old Pennsylvania girl who wasn’t expected to live through the night (“I had to manage to survive by sheer will”) grew into the young woman who barnstormed in a biplane, camped, fished and traveled the world before handicapped-access existed. (Before a long airplane flight, Hoffa would avoid drinking anything, so toilet facilities wouldn’t be an issue.) She was a sports reporter in the ‘40s in Honolulu, then a magazine writer.

Shared Adventures

“Every time I needed money, I usually found something to do. I was a bookkeeper for a while. I taught art classes for a long time,” she said. “My mother told me that you should always be able to get a job, and she said I was no exception, even if I couldn’t walk.”

When she moved to Chula Vista with her parents in 1952, Hoffa met Wilma Lusk, who has assisted Hoffa with daily life and shared adventures with her since.

“When Wilma started taking care of me, I said, ‘Well, let’s get together and we’ll live on the beach, live in La Jolla, drive a foreign sports car, and go to college,’ ” Hoffa recalls. “It ended up that the foreign sports car was a VW, and the cottage was a little one on Marine Street, but we got there, and we did go to San Diego State.”

Once, the two joined a Buddhist monastery in the University City area. “I thought the only way to find out what the Buddhists were was to go be one, so we did,” she said. “So we spent a whole year getting up early in the morning and chanting. I never got so sick of rice in my life.”

After experiences like that, not being able to leave the house has been hard, Hoffa says.

“I’m not a Pollyanna,” Hoffa says when asked about the frustrations of living 16 hours a day inside an iron lung. “I get angry sometimes, and I get down--that’s why I have a teddy bear. I tell him when I get angry. I tell him just what I think of the whole thing. And then sometimes I’ll say to God, ‘OK, OK, throw another thing at me. Go ahead, I dare you.’ I’ve got my temper too.”

Perched above her head, Beowulf the teddy bear seems to belie that anger. So does the calendar taped near him. “I want to know what I’m going to do tomorrow and next week,” Hoffa explains.

And, even in immobility, Hoffa is staying active. Tortuously, with pen and paper because she can no longer type, she is at work on her third book; it follows a handbook for the disabled and a mystery novel set in La Jolla.

Her secret weapon against giving up? Knowing how to rely on others--including San Diego Hospice--for help, she says. She uses as an example Sir Edmund Hillary, who, with the help of native guides, became the first Westerner to scale Mt. Everest.

“I call it my Hillary principle,” she said. “I think anybody in the world can climb Mt. Everest if they’ve got a band of Sherpas. So I figure hospice is one of my band of Sherpas. Without hospice, really, I don’t know--my band of Sherpas would be awfully small.”