By Ceci Connolly
Washington Post Staff Writer
Saturday, June 18, 2005
PINELLAS PARK, Fla. -- In the pre-dawn hours, when sleep is futile and death has not yet arrived, Charles Young and Tom Saviano find common ground in a kitchen permeated by the smell of fresh coffee and stale popcorn. Each is waiting to bury a child.
In rooms less than 25 feet apart, Young's 27-year-old son and Saviano's 48-year-old daughter are near the end. Like Terri Schiavo, the woman who died here about two months ago, they will live out their final hours in Hospice House Woodside. And like Schiavo's parents, the two men are struggling to grasp the inconceivable.
"I can't believe this is happening to me," says Saviano, tears welling up, learning firsthand what hospice is when it isn't on the television, when it isn't in the courts. When hospice is your own private agony. "My wife and I are both wondering what we did wrong."
He is wearing the same navy slacks and golf shirt he arrived in 19 hours ago, back when he was speaking optimistically of bringing his eldest daughter, Debra, home, back when he still thought she had a chance at beating the cancer now overtaking her. After a couple of fitful hours on a pullout couch, Saviano is up again, prowling the near-deserted halls. It's 4:20 a.m., and except for the constant whoosh of oxygen machines and the occasional hacking cough, the single-story red-brick building is quiet.
"We always helped other people," Saviano tells Young. "That's what we can't understand. Anybody who was sick -- friends, neighbors -- we were right there."
Young nods, pouring coffee into a foam cup. He arrived from Ohio two weeks ago when doctors confirmed they were running out of options for treating his son's tongue cancer. Dressed in blue striped pajamas, a pack of Kools tucked in the breast pocket, he, too, has been up most of the night, shuttling between James's room and the smokers' porch just off the kitchen.
"You wanna do something, but there's just nothing to do," he replies. "All you can do is just wait."
Two months after the Schiavo case exposed an entire nation to one family's bitter battle with death, the hospice has returned to its normal rhythms. In the past 60 days, 129 new patients have arrived, 19 memorials have been held and 88 residents have died, each departing the way Schiavo left -- on a gurney, face uncovered, showing that at Woodside, death is not hidden.
Unlike this routine day, the staff has a name for the Schiavo period. They call it The Siege. The two-week sideshow of demonstrators, bomb threats, court rulings and political interventions.
Now -- liberated of the television cameras and police checkpoints, the pastor with the bullhorn and the life-size Jesus on a cross, Jesse Jackson and Randall Terry, the juggler and the monks -- the people of Woodside are back to the everyday business of dying. For all the chaos and emotion the Schiavo case elicited, it did not alter the fundamental nature of Woodside and the 3,200 hospices across the country. For 15 years, they have been the place where anyone, regardless of age, wealth, handicap or history, can find company on the way to death.
Today, the only visible reminder of it all is a three-foot-tall angel watching over the nurse's station on Beach Avenue, the wing where Schiavo lived for five years.
"To our angels at hospice who cared for us," reads the statue's brass plaque. "Thank you, Mike & Terri Schiavo."
A new patient has moved into Schiavo's room but is unaware she is occupying a space of such high drama. The idea is to move forward. Beneath the surface, however, the aftereffects remain.
To spend one full day at Woodside is to witness the inexorable routines of death. All that seemed extraordinary in March -- feeding tubes, last rites and parents unable to let go -- is again unremarkable.The Cycle Begins
This 24-hour period begins like most others, though it is Young, dragging on his first Kool of the day, who clarifies what Woodside's version of normal is: "Our minutes seem like hours."
Young has entrusted his son to a unique form of modern health care. The purpose of hospice is to provide end-of-life care, traditionally defined as the final six months of life. The goal is support and pain relief, or palliative care -- not cures.
Shortly before 9 a.m., Dr. Theresa Buck begins rounds on Magnolia, where the most severe cases reside. Entering Room 41, she is greeted by Debra's mother, Corrine Saviano.
"She's still not eating," she tells Buck. "But she is a lot calmer."
With her short-cropped, dark hair and involuntary body movement, Debra Saviano resembles the infamous video of Woodside's most famous patient.
"We'll draw some blood today," Buck says, stroking Debra's hair.
From the bed comes a sound that is both guttural moan and ferocious yell. Tom Saviano's body tenses, fists clench. He turns away.
"We lost our youngest three years ago," he says. It was Debra and Corrine who cared for Dorine after her leukemia was diagnosed. "That's why this is so brutal."
Still, Saviano sees Woodside as a way station, not the end of the line. "We brought her here to clean her up," he says. If Buck can treat Debra's infection, she can go back to the Moffit Cancer Center in Tampa for more chemotherapy.
In the hall, without prompting, Buck answers the impolite questions not asked inside Room 41.
"She's screaming, but she's not in pain," Buck says. "She looks retarded, but she is not. It's the chemo, the side effects, the urinary tract infection. I told the family I'm hopeful, but I can't promise."
Trained as a pulmonary specialist who worked for much of her early years in the emergency room, Theresa Buck, 43, is finally doing the missionary work she dreamed of. Each day she ministers to the dying, utterly at ease with the sights, smells, sounds and unique language of death.
In the heat of The Siege, Buck, who was not Schiavo's primary physician but who cared for her when needed, tried convincing her parents that not everything they saw in the news was true. To them, the video clips of Schiavo rolling her head, emitting gurgling sounds, proved the young woman was not in the persistent vegetative state that Buck and other doctors had diagnosed.
"I gave up. It was a losing battle," she says, not a hint of anger in her voice. "God knows what I do."
It isn't always easy for Buck to let nature take its course. She admits to being angry when a diabetic in kidney failure recently arrived in bad shape. The woman could be healthy today if she had gotten proper treatment. At this point, though, Buck has little choice but to stop the insulin pump and wait.
"My initial instinct -- what I wanted to do -- was fix it," Buck says. "She's tired. She wanted to go in peace."
Thomas Broderick, on the other hand, is fighting death with what little strength his body can muster.
"My lungs are congested," the 51-year-old tells Buck when she arrives at his apartment on the Woodside grounds. "I was thinking about that pump."
She jots a note to switch Broderick from pain pills to an intravenous line so he can administer the medication himself. "We'll make a good cocktail for you."
"You still sound horrible, Thomas," she says, listening to his chest.
After his inoperable lung cancer was diagnosed six months ago, Broderick, like many, resisted coming to Woodside, fearing the recognition that there is little time left.
"I'm still in shock," he confides, looking out from under a Yankees cap that fails to conceal his bald head. "I have not cried one tear to this day."
Broderick is afraid of death. But he is even more "afraid that it will be a painful death, like suffocation," he whispers. He heard about Terri Schiavo and knows he should make out a living will, but he is overwhelmed by the legal issues.
"I would like them to keep me alive as best they can," he says at first. "But I don't want to be laying there in pain."
He hopes to make it to Christmas and would like to go to SeaWorld "for my last wish -- I like sharks, dolphins, whales."A Weekly Ritual
Shortly after lunch, Woodside's senior staff -- all women, some knitting -- gather for their weekly meeting. It begins with a ritual -- the reading of the names of patients lost the previous week.
As the first is announced, Jean Ledoux, the chaplain, taps a chime and lights a votive candle. Each name comes with a story. The 91-year-old who hung on until his grandchildren arrived, the childless couple who after nearly 70 years of marriage seemed to need only each other.
For the past two months, Ledoux has been stuck in her own sort of netherworld, caught between her midlife calling to provide pastoral support to the dying and the public portrayal of Woodside as an unholy death chamber. Intellectually, she knows the "people out front were extremists," but she cannot reconcile how self-professed Christians -- many wearing robes -- could have been so "degrading, hurtful . . . misguided."
"This is sacred ground," she says.
Here Ledoux plays the jester, passing out pie, cracking jokes. But privately, she confesses she is seeing a trauma specialist, hoping to find some deeper meaning in The Siege. For some of her colleagues, it hit like a single, violent car crash. But for Ledoux, "it's more like a creeping-up-the-back-of-your-neck kind of feeling."
At Woodside, death does not end the process.
In the chapel, the Boulgier family is holding a memorial. And on Magnolia Avenue the Savianos have gathered outside Debra's room.
"I don't want her to see me crying," Corrine Saviano says. This is night six in Woodside for mother and daughter.
"She ain't gonna make it. Her organs are failing," Tom Saviano says. About an hour ago, the social worker delivered the news. "We don't know how long -- a day, two days, a week. We tried to give her every chance we could."
They have discussed their options, know Debra's wishes.
"I don't want her suffering no more," Corrine says. "If she can't live comfortably, I will let her go."
In the kitchen across the hall, Charles Young is fixing a late supper, buttering two slices of toast. Two days ago, the staff advised Young to "make arrangements" for his son. "There's no reason for him to still be here. His will to live is just incredible. If it were me, I'd let go."Burying Your Children
"Morning," Charles Young says, emerging from his son's crowded room at 2:15 a.m. In addition to James, six family members have crashed on the sofa bed, air mattress and lounge chair. Charles Young gets up periodically to suck mucus from his son's breathing tube, or just to have a smoke.
"I know it sounds weird, but you want your children to bury you," he says. "You don't want to bury your children."
Two hours later, Annie Santa-Maria, director of inpatient and residence services, enters her pitch-black office.
"Since the Terri thing, I've had trouble sleeping," she says. "So I just come in. I get e-mail done or read."
Like many of the staff, Santa-Maria is only now processing the Schiavo episode. Her nightmares are the what-ifs. What if one of the bomb threats was real? What if someone had broken past the barricades and given Schiavo a sip of water?
"If they had given her a cup of water, she would have choked to death," Santa-Maria says, her frustration bubbling up. "I just wanted to yell at them, 'We have people die with feeding tubes all the time.' "
Some of her devout Catholic siblings disapproved of her role in the Schiavo case. The Catholic police chief peppered her with questions of ethics and morality. Congress subpoenaed her.
Santa-Maria opens her laptop to a PowerPoint presentation. The working title is "Woodside: A Fortress of Caring." Unlike the television images beamed around the world, the photos depict The Siege from the inside. Police in camouflage patrolling the verdant back grounds, people in wheelchairs pressing against orange mesh fencing, and the signs:
"Feed Terri! For God's Sake."
"Stop the Murder."
"I would watch volunteers feeding and bathing our patients day and night, and they're out there calling us murderers," she says, her voice piercing the 5 a.m. silence.
As this 24 hours draw to a close, Santa-Maria walks the corridors. She pauses in the kitchen on Magnolia long enough to shake hands with Tom Saviano and Charles Young, who have just discovered their painful bond.
"I wish you could have seen her two months ago," Saviano is saying of his daughter. Even loaded up with half a dozen drugs, Debra always kept her wits about her. "What's the prognosis on your son?"
"He's a fighter," Young replies.
Saviano's mind is reeling -- to the doctor's appointment he forgot to cancel, to the final hours with Dorine three years ago, to the call he got late last night from his other two daughters.
"They want to come. We told them not to. We don't know how long it will be," he says, the tears returning to his tired eyes. "They want to see their sister while she's alive."
The cycle of death at Woodside, somehow both heart-wrenching and mundane, continues. Young, his family still asleep in the room next door, heads for the smokers' porch.
"Hang in there," Saviano tells him. He turns and crosses the hall to Debra's room. The vigil goes on.
Editor's note: Debra Saviano and James Young died subsequent to the reporting of this story.