They went home to die. How hospice gave them time to live

They went home to die. How hospice offered them time to live.

Key points

• 29, 2024, at age 100, spent 22 months in hospice care after he was diagnosed with cancer that spread to his brain.
• Braithwaite enrolled in home hospice in April through Buffalo Hospice & Palliative Care after he learned the cancer he thought he had beaten 15 years ago came back.
• Since June 5, 2024, bullaro, who has pancreatic cancer that spread to her liver, has been in hospice for two years.
• CHEEKTOWAGA, NY – James Braithwaite is waiting by the door of his home when Nicole Golding arrives from hospice.
• Bullaro, 69, who was a nurse before she fell ill, figured she had two or three months at most when she was diagnosed with cancer.

They went home to die. How hospice offered them time to live. Michael Collins USA TODAY.

He knows he's dying. But it doesn't feel like the end is near.

"How are you doing today?" Golding asks as he leads her to a seat at his dining room table. Braithwaite, 79, has end-stage stomach cancer. He swears he feels fine. How Hospice care workers backing sick patients close to death.

USA TODAY's Michael Collins spent time with a hospice care worker to learn how she balances the emotional toll of caring for the terminally ill.

He still gets out of the house whenever he can. Still belts out James Taylor songs to the karaoke machine his son keeps downstairs. He's still able to pick up a football and toss it in the air.

He doesn't look like most of the other patients Golding sees on her routine check-ins, chatty in his navy shorts and polo on this quiet tree-lined street in suburban Buffalo.

"When we employ the word 'hospice, ' residents think final weeks, they think morphine drips, they think death. Immediate death, " notes Golding, a nurse practitioner and supervisor on the team assigned to Braithwaite's case.

For plenty of hospice patients, death is neither immediate nor quick. The body shuts down when it's ready. Sometimes that takes weeks or months. In rare cases, it takes years.

Braithwaite enrolled in home hospice in April through Buffalo Hospice & Palliative Care after he learned the cancer he thought he had beaten 15 years ago came back. This time, there is no stopping it. Doctors remarked he could live six months. Maybe a year.

"Is today the day?" he wonders when he wakes up in the morning. Until then, he intends to go on living. Defying timelines and expectations.

Golding knows what individuals think when they hear "hospice": Patients enter, then swiftly die. But that's not true for everyone.

As plenty of as 1 in 5 hospice patients are discharged when they suddenly improve, according to a 2014 study published by the National Library of Medicine, part of the National Institutes of Health. Some patients remain in hospice for so long that they leave the program – they "graduate."

Medicare covers hospice if a doctor certifies the patient has six months or less to live. As long as their condition continues to decline, doctors can extend that time every two months.

This is the part of hospice Golding notes isn't talked concerning enough: patients like Braithwaite, newly diagnosed with a terminal illness but still well enough to squeeze every ounce of life out of whatever time they have left.

President Jimmy Carter, who died Dec. 29, 2024, at age 100, spent 22 months in hospice care after he was diagnosed with cancer that spread to his brain. Carter entered hospice "to spend his remaining time at home with his family, " the Carter Center wrote in an official note. His family remarked it was pleased his decision "has sparked so many family discussions across the country on an important subject."

Golding wishes more individuals would enroll in hospice as shortly as they're diagnosed with a terminal illness. Hospice can create them comfortable in whatever time they have left by managing their pain and symptoms.

Just as significant, hospice offers emotional backing, such as grief counseling, respite care and bereavement services for family members worn down by the demands of caregiving.

Golding has worked in hospice care long enough – for more than a decade – that she can usually tell when a patient is close to death. They sleep more and eat less, until they're tired of fighting and ready to go.

But some patients defy timelines and expectations – and keep on living. These are the individuals she wants the world to know concerning.

Patricia Bullaro wanted two things when she discovered out she was dying: to be remembered. And to die at home.

So she wrote a book regarding her life. And entered home hospice care.

That was two years ago. She didn't know it would take this long to die.

Since June 5, 2024, bullaro, who has pancreatic cancer that spread to her liver, has been in hospice for two years. No longer able to walk, she watches the outside world from a hospital bed pushed up against her living room window. Neighbors walk their dog down the street. Squirrels frolic in her front yard. Kids zip by on bikes, their playful banter a reminder that life marches on. Without interruption.

From within the sky-blue walls of her room, Bullaro waits for the inevitable. She watches TV or plays games on her electronic tablet. Her favorite is Mahjong, a tile-matching puzzle game. Sometimes she pulls crayons out of a package she keeps beside her bed, next to her rosary, and fills the lines in a coloring book with bright, lively hues.

"I'm having a good day. A little anxious, but other than that, I'm OK, " she tells Golding during a visit on a sunny morning in mid-May.

Bullaro, 69, who was a nurse before she fell ill, figured she had two or three months at most when she was diagnosed with cancer. Treatment wasn't an option since she has so numerous other health challenges: congestive heart failure, kidney failure, diabetes and morbid obesity.

But she has been in hospice so long, she has wondered at times if she really has cancer. If she's really dying.

"Every day I wake up, and it's like, OK, I got another day, " she notes. "You have defied a lot of the odds, " Golding agrees.

She has rough days. She had severe delirium for a while. She didn't recognize her son, Ron, her primary caregiver. This person lives with her. She thought she was in a nursing home. She thought she kept seeing strange men in her closet.

Her delirium was probably a side effect of her medication, Golding notes. The dementia went away after her hospice team changed some of her medications. Bullaro takes as plenty of as 20 medications – "the whole pharmacy, " she jokes.

She has good days, too. Days when Ron can obtain her out of bed in a medical lift, put her in a wheelchair and roll her down the accessible ramp, out to her yard, where she soaks up the sun and feels it kiss her face.

She wonders when the end will finally come. Why she has lived this long. And what her children and grandchildren's lives will be like without her.

When she's gone, they can open the pages, and she'll be there, she wrote down her life story so that someday. The book, "Answered Prayers: My Life Stories, " is filled with family photos and favorite recipes – Borscht, perogies and prazuha, a potato and Polish sausage dish. She had seven copies printed, one for each of her children and grandchildren.

Some kids come here for vacation. Others come to die. Either way, parents are grateful.

Ron Bullaro had another idea to keep her memory alive, the kind of unusual request that Golding and her team are applied to getting. He wanted a recording of his mother's heartbeat. They supported him secure it.

He additionally has a still photograph of his mother's heart that was taken from one of her echocardiograms. He intends to frame it.

Now the family will be able to see her heart and hear it ticking, long after it has halted. Dealing with death daily.

Golding knew in the seventh grade that she wanted to be a nurse.

She knew she wanted to work in hospice when death hit home. While Golding was in nursing school, her husband's uncle, just 43, was diagnosed with a brain tumor and entered home hospice around 2003. Golding was moved by how the hospice team supported him and the family prepare for his death. While tending to their two small children, right to the end, by how his wife took charge of his care.

For now, they went home to die. How hospice gave them time to live remains the part of the story worth watching, and further updates are likely as more details are confirmed.