In Hospice Care, He's Living In The Moment

Toll Ballard is dying, and he's learning to live with that.

It has been more than a year since the doctor told him his lung cancer isn't going away. A cure isn't the focus anymore. It's about keeping Ballard as pain-free and comfortable as possible.

He already has outlived most estimates by at least eight months.

"To tell you the truth, I never think about it," the affable retired brewery worker said recently about his impending death.

Instead, the 78-year-old focuses on his life at home, where he's a LifePath Hospice patient.

"We thought when the doctor called hospice in, that he had just six, seven or eight weeks," said Ballard's son Ricky. They pictured all the sit-stoically-at-the-bedside stereotypes. "We were concerned."

But his dad's Plant City home is anything but solemn, especially on Sundays, when most of his five grown children and friends get together. Show up anytime after 8 a.m., and you're bound to get some biscuits, eggs, grits, two kinds of gravy and a lot of storytelling.

Ballard loves visitors. His "regulars" include a hospice social worker, a nurse and a chaplain he calls "The Preacher." It's their job to assess his level of pain and need for medication, and to teach Ballard and his family how to live in concert with the very real and emotional strains of a looming death.

Health care in the hospice world is about being prepared for the end and doing it in a healthful way, with as little physical or emotional pain as possible for the patients and those who love them. Despite the country's growing familiarity with hospice programs, that concept contradicts the all-American phobia of death and a health-care system designed to cure, experts and hospice workers say.

"We don't deal with death and dying well," said Stella Mora Henry, an elder-care consultant and author of "The Eldercare Handbook" (HarperCollins, $16.95). "We prepare for everything else, but not this."

An innate fear of death is one reason why people are reluctant to utilize hospice services. But others worry that accepting a terminal diagnosis is tantamount to giving up on all forms of treatment, said Brian Carpenter, an associate professor of psychology at Washington University in St. Louis.

"It's not about just pulling plugs and letting people die," said Carpenter, a hospice researcher.

Average Care: 52 Days

Medicare insurance rules dictate that hospice care can be offered only to people diagnosed with a condition that carries a life expectancy of six months or less. Some live longer, others don't. Of the 797,119 people in hospice care nationwide in 2004, the average length of care was 52 days, a congressional study showed.

Hospice care has been available in Hillsborough County for 25 years. Today, 1,100 Hillsborough residents are living with its help in their homes, assisted-living facilities or hospitals, or in one of the 48 beds at LifePath Hospice houses in Temple Terrace and Sun City Center. About 350 patients die every month in this "club no one wants to join," said Tammy Alsing, Lifepath's bereavement manager.

"The reality is that every person's life is limited," she said. "But it is still life."

Care varies for each patient, family and situation, but it is always handled by a team that addresses physical, emotional and spiritual issues together. Patients must agree that whatever care they have is not curative but is palliative, or focused on pain management.

About 45 percent of hospice patients have terminal forms of cancer; the rest suffer from end-stage diseases such as Parkinson's and Alzheimer's. Those latter conditions are a huge part of the increased attention to hospice, and are responsible in part for an increase over the past decade in the number of days a hospice patient receives care, said Paul Ledford, executive director of the Florida Hospice Association.

Ballard's hospice care focuses on keeping him at home, close to his wood shop, where he escapes to the smell of sawdust and projects: sconces, bookshelves, a picture frame.

His care includes pain management, matter-of-fact questions and difficult discussions, including talking about Ballard's own grief over the sudden loss of his beloved wife, Hazel, in 2007. Those talks are among the most painful he and his social worker, Ann Makowski, share, but are critical to his overall wellness, she said.

Team Brings 'Good Eating'

There also are moments of joy, including a surprise visit from hospice team members in December to celebrate Ballard's birthday with a huge balloon that played "The Chicken Dance."

"They brought me some good eating," he said recently, smiling and staring at the balloons still floating in the dining room. He admits he laughs, and cries, far more frequently now.

Ballard knows he must make compromises to live at home. He agreed to have one of his children at home all the time. He doesn't go to the wood shop alone. He'll sit down and use an inhaler when his eldest daughter, Judy Carney, hands it to him. This is what quality of life means to a man with limited time.

"I always want to live here," he says of the place where he and "Mama" lived for most of their 53 years together. It's not too far from her grave, and he gets a ride there once a week. He'd go more often if he could.

Judy quietly acknowledges the fact that her dad is dying. But she says the sadness is alleviated some by knowing the hospice team is available to manage the surprises and struggles that come with caring for him. When she lost her mother, it was sudden and in a hospital.

"If I have any questions now, it's a phone call away," she said.

Softening The Grief

Alsing, the LifePath bereavement counselor, says the work done with family members before their loved one dies can soften the grief that comes with the end of a physical life. Only 25 percent of hospice family members take advantage of the free counseling offered in the year following a patient's death.

"It's emotionally draining for everybody, but the final chapter of life has the potential to become the best part," said Carpenter, the psychology professor.

"We put so much attention to the birth of a person," he said. "But their death can be just as important."

The people who experience hospice can be the bridge to demystifying the stigma of death and dying, Ledford said. A century ago, nearly all Americans had a direct relationship with death, whether it was through the loss of a sibling, sudden death, or laying out the deceased in the parlor for mourning.

"Today, we're almost isolated from that, and it's good that health care has gotten so good," Ledford said. "But we need to keep track of that reality."

Toll Ballard knows his reality is going to finish before too long. Sure, he'd like to live to 81, the age his own daddy died. But he's not looking that far ahead, or behind anymore.

Living well, he said, means staying focused on now.

"I try to live in the moment."