East Bay hospice facility draws praise from loved ones, dying

0 Comments | Oakland Tribune, Oct 4, 2009 | by John Simerman

ALAMO -- With its trellises and rose bushes and frilly white trim, the house on Miranda Avenue sits neatly among its well-kept neighbors. There are no sign posts out front, nothing to turn an eye as a group of young day-campers march past in single file along the narrow road.

Here, behind front window blinds, in Room No. 2, Robert Butkus lies comfortably dying.

Pillows gently support him on the bed. A bit of morphine eases his pain. His gray hair is combed back, his tan face tinged with jaundice.

"I'm 72 years old and my liver is gone. I've got tiny stones in the bile duct. I was taking this stuff, it was just nausea all the time. It was just kind of no way to live," he says. "I'm Catholic. I saw a priest. He said you can only go so far with unnatural treatments, it's OK. So here I am."

Butkus traded hospital runs and a painful decline for a shorter course: a few final, peaceful weeks at a six-bed inpatient hospice facility that has drawn little attention since it opened five years ago. Bruns House, run by Hospice of the East Bay, is one of just a few such inpatient hospice facilities in the state, with a 24-hour staff to lend comfort to the dying and their families when little else makes sense.

Patients may spend weeks, days or only hours here while doctors and a staff of nurses and aides control their pain or agitation, social workers counsel and chaplains guide. Since it opened in 2004, more than 1,400 people have died here. Many of their names are etched in bricks that form an arc around a gurgling backyard fountain. Jim "Fatz" Ruiz. Basil Balaban. Karen Cinderelli. Sargent O. Littlehale.

Family members frequently return, often on anniversaries, to walk or sit in the yard.

"The families are just so thankful. They feel so grateful. The pain is being handled. They can kind of, not enjoy the process of death, but the stress is taken off," nurse Joy Favaedi said, as two of Butkus' grandchildren played in the living room. "It's a sad place, but such a positive place."

While the health care debate rages in Washington, spurring summer mudslinging over government "death panels," intensely personal decisions over end-of-life care carry on in private, as patients and their families search for an alternative to death surrounded by machines and a medical mindset to keep ever trying.

Comfort and care

Advocates for hospice -- which focuses on comfort in the last six months of life, normally at home -- view the political debate as a reflection of cultural reticence to accept death or recognize a downside to persistent life-extending measures. Places like Bruns House fill a need for acute hospice care in a homelike setting, say advocates and loved ones of people who spent their last days here.

Visitors at Bruns House can stay overnight and cook in the open kitchen. Children fill coloring books on the burgundy living room carpet, watch movies or play out back. Pets -- dogs, cats, snakes -- are welcome guests. The menu shows a deep disregard for the kind of carefully restricted diets that many of the patients have followed. Among the offerings: pizza, beef burritos, fettuccine, fried chicken, BLTs.

"We give them ice cream, cake, even if they're diabetic," said home health aide Gloria Rasonable as she stirred creamy chipped beef onto a plate. "Why not?"

For Butkus, who made a career in cardboard displays, played saxophone in the Danville Community Band and lived in Rossmoor for the past eight years, it became a basic question of quality.

"I've lived a good life. It's a bit shorter than some others. My father lived to be 88. My mother, she had Alzheimer's for 10 years. Maybe it's better to stop it here," he said.

"You're very brave," said his daughter, Barbara, sitting at the foot of the bed.

"Thank you," he said.

A younger patient

Across the hall, an oxygen machine hummed from Room No. 4. Ottoneil Dona, a 44-year-old Martinez man with Down syndrome, dangled a cramped leg over the side of the bed in a long white tube sock. "Nacho Libre," the Jack Black comedy, played on the TV.

A year of chemotherapy treatments for his leukemia didn't help. Lately, he has been fighting the needles and suffering anxiety attacks.

"It got to the point where he didn't want no more. They had to tie him up. It made him feel really bad," said his father, Otto Sr., a trucker. "He knows exactly what's going on. His mom said, 'When you die, are you going to look for me?' He says, 'No, I don't want to scare you.'"

The family decision came hard. Otto's brother, Robert, and his sister, who would take him for treatments, at first disagreed.

"It got real desperate. She wanted to do anything to keep him here. She's got that science thing. I've got the religion part. Catholic," Robert said. "I just didn't want to see him suffering. It was like, just seeing him cry (at treatment) was so hard."

Family strains naturally surface at the house. Social workers try to bridge the gap.

A stigma -- that hospice means giving up -- remains, and the result is often late referrals, hospice leaders say. Rarely do patients learn of Bruns House until a week or two before death. The average stay is four days.