Family members and nurses were by Ottoneil Dona’s side since his arrival at the Bruns House hospice care facility in Alamo. Nurse Joy Favaedi, middle, and Dona’s sister Maria Alicia are there to comfort him Aug. 12 during his final days fighting leukemia.

Dr. Charleston Cone checks on Evedine Glover, 89, as she naps in August at Bruns House. “I can accept death. I can’t accept pain and suffering,” Cone says. Glover was suffering from dementia.

Finding final peace

Facility helps comfort patients until the end

By John Simermanjsimerman@bayareanewsgroup.com

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 careAdvocates 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

With a blood-pressure cuff hanging loosely around Joyce Nichols’ arm, home health aide El Aranas takes a measurement Aug.10 to help him take the77-year-old’s blood pressure at the Bruns House hospice care facility in Alamo. Nichols brought a pillow to the facility from home.

Dr. Charleston Cone takes a phone call Aug. 5 while completing paperwork at Bruns House, Toby, a familiar face at the facility, makes himself at home on Cone’s lap.

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 patientAcross 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.

Ottoneil Dona is visited by his father, Otto Sr., who drove from Colorado to see his son at Bruns House.

Family members visit Ottoneil Dona on Aug. 11 at Bruns House during his final days battling leukemia. Dona was waiting for his father, a trucker driving from Colorado. Dona died days after his arrival.

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.

“Maybe one person needs to be the optimist in the family,” said social worker Jim Stark.

“For the patient it’s hard, because it’s like, ‘I feel I’m dying but I can’t talk to anyone.’ You just want somebody there who can be OK with that.” In some cases, the tension is between the family and the staff. In the kitchen one evening, two relatives grew frustrated over the morphine level for their loved one. The staff’s goal is pain relief, but the family wanted more quality time, less haze.

“It is the end-of-life process. The body shuts down,” Stark said. “It’s a trade-off. The families are insisting, ‘Can we try a little less medication,’ and the patient is in pain again.”The relief often liberates hospice patients. Some then die quickly, sometimes shortly after arriving.

“A lot of times they’re able to let go, because they’ve been fighting, they’ve had so much pain. They’re more peaceful,” said nurse Ann Riddle. “We neither prolong nor hasten. Neither one. It takes its natural progression.”

Final arrivalButkus arrived on a Monday in early August, one of three patients admitted that day. Evedine Glover, 89, took Room No. 5 with the stone fireplace. A few days later, she sat in a wheelchair in the living room with the vaulted ceiling and couches, in a white robe and aqua blue socks, her white hair neatly combed. Her sunken eyes were red, but memories of her youth on a cotton farm in North Carolina briefly spirited past her dementia.

“I used to sing in a quartet. Always pretty songs. And we would be so happy, so happy. It was a good start out to life,” she drawled.

“The Lord sees you singing, knows you’re singing.”A small dog in the house barked. CNN beamed on the flat-screen. Crystal Raygoza, a young home health aide, held Glover’s pale, fragile hand and smiled. “Do your eyes hurt you? Is it too bright? Do you want me to close the shades?”When Raygoza started at Bruns House eight months ago, watching patients die was “like watching a movie of a person dying,” she said. It’s easier now, she said.

“There are times when you’re bathing somebody, and they go. You can just tell. The breathing. The color’s different,” she said. The rewards come “when you do a good job

and they tell you you’re an angel. Especially when it’s their last day.”Staff members grow close to some patients. It can take an emotional toll. They hold a monthly ceremony where candles are lit for the dead.

“Last week, I was very fond of a patient, Bonnie. I didn’t want to leave without telling her I loved her. And I did love her. She would have been a great girlfriend,” Riddle said.

“You cry. I’ve cried with families. You grieve. I will certainly light a candle for her.”Bruns House was named in memory of Air Force Lt. George H. Bruns III of Lafayette, who died in 1967. His family donated a major down payment for the house. It costs $2.3 million a year to run. About three-quarters of the funding comes from Medicare and other reimbursement. Donations support the rest.

A doctor’s viewAs a primary doctor for 14 years, Charleston Cone said he was frustrated by the lack of time with patients and a culture that “is still dealing with accepting the idea that it’s OK to pull back. It’s OK to get old. It’s OK to die,” he said. “I can accept death. I can’t accept pain and suffering.”Cone paid a visit to Glover in Room No. 5. The woman suffering from dementia had climbed out of bed in the night. The staff found her on the tile floor. Two Plexiglas slats now blocked the spaces along the bed sides and a baby monitor was set up to listen in on the room. She slept with a red teddy bear beside her head.

“You don’t have to move for me. I’m just going to listen to your heart and lungs,” the doctor told her. “I’m going to poke your tummy just a little bit, check your hands, check your legs. Then I’ll be done.”He studied her face. This was not a health exam. It was a pain check.

“You’re looking for grimacing or frowning, changes in the breathing, signs of agony,” he said. “She’s pretty comfortable.”Medicare covers hospice care for patients who have been diagnosed with less than six months to live. If they are not “actively dying,” or their pain or symptoms have stabilized, they will be discharged from Bruns House. Glover, now stabilized, was one of them. Her daughter, Billie Sexton-Brown, would see her home by ambulance the next day.

“She’s walking. She’s talking. This could go on for years. She could hit a plateau and stay there for a while,” nurse Linda Flumerfelt told her. “You need to take care of yourself. It’s like having a new baby in the house.”

“Well, I’m going to try,” the daughter said nervously.About one in eight patients is stable enough to return home, or to be moved to a longer-term facility. Butkus had no such expectations. He would remain, in Room No. 2, for five weeks.

“They kept him just beautifully. He was really relaxed. The breathing was troubled, but he was not in pain,” said his companion, Mary Tudor. Around Labor Day, his breathing changed.

“It was kind of arrhythmic, with kind of a rattle between it. That went up fully the last day, but he seemed relaxed,” she said. There was a different sound the night of Sept. 9, and his head fell back on the pillow. Butkus died at 7:39 p.m., said Tudor, who was sitting by his feet. A staff member folded his arms and draped his rosary on a pillow. When his daughter arrived, a rose from the garden lay on his chest.

Home health aide Celsa Cruz, left, helps Don Knepper guide his grandmother Evedine Glover, 89, back to bed Aug. 5 after a trip to the backyard garden with Glover’s daughter Billie Sexton-Brown, right, at Bruns House in Alamo. During a respite from her dementia,Glover, a singer in her youth, said, “The Lord sees you singing, knows you’re singing.”

Evedine Glover takes a tour of the Bruns House garden with her grandson Don Knepper and her daughter Billie Sexton-Brown on Aug. 5. The garden has a fountain encircled with bricks bearing the names of patients who have died at the facility.AnneSteinmann, a retired hospice doctor, designed the garden.

Dr. Charleston Cone checks on Robert Butkus in the Bruns House garden Aug. 7. Earlier in the afternoon, Butkus had a lemonade get-together with his family in the garden. “I’ve lived a good life,”said Butkus, 72. “It’s a bit shorter than some others.…Maybe it’s better to stop it here.”

Nurse Joy Favaedi administers medicine crushed up in vanilla pudding to Glover. Bruns House patients aren’t forced to follow a strict diet. The menu includes pizza, burritos and ice cream.

A place to silence pain

STAFF PHOTOS BY SUSAN TRIPP POLLARD

See a slide show on Bruns House at

contracostatimes.com

For more information about Bruns House call (925) 887-5678 or visit www.hospiceeastbay.org