CHEEKTOWAGA, NY – James Braithwaite is waiting by the door of his home when Nicole Golding arrives from hospice.
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 has end-stage stomach cancer. He swears he feels fine.
How Hospice care workers support 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 use the word hospice, people think final weeks, they think morphine drips, they think death. Immediate death,” says Golding, a nurse practitioner and supervisor on the team assigned to Braithwaite’s case.
For many 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’d beaten 15 years ago came back. This time, there is no stopping it.
Doctors said 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 people think when they hear “hospice:” Patients enter, then quickly die.
But that’s not true for everyone.
As many as one in five hospice patients are discharged when they suddenly improve, according to a 2014 study. 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. Doctors can extend that time every two months, as long as their condition continues to decline.
This is the part of hospice Golding feels isn’t talked about 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.
The late president Jimmy Carter, who died Dec. 29, 2024, 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 a statement. His family said it was pleased his decision “has sparked so many family discussions across the country on an important subject.”
Golding wishes more people would enroll in hospice as soon as they’re diagnosed with a terminal illness. Hospice can make them comfortable in whatever time they have left by managing their pain and symptoms.
Just as important, hospice offers emotional support, such as much-needed 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. Eat less. Until they’re tired of fighting and ready to go.
But there are patients who defy timelines and expectations – and keep on living.
These are the people she wants the world to know about.
Waiting to die
Patricia Bullaro wanted two things when she found out she was dying: To be remembered. And to die at home.
So she wrote a book about her life. And entered home hospice care.
That was two years ago. She didn’t know it would take this long to die.
Bullaro, who has pancreatic cancer that spread to her liver, has been in hospice for two years, since June 5, 2024. 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 worked as a nurse before she fell ill, figured she had two or three months at most when she got the cancer diagnosis. Treatment wasn’t an option because she has so many other health problems, such as 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 says.
“You have defied a lot of the odds,” Golding agrees.
She has rough days. She had bad delirium for a while. She didn’t recognize her son, Ron, her primary caregiver who 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 says. The dementia went away after her hospice team changed some of her medications. Bullaro takes as many as 20 different medications – “the whole pharmacy,” she jokes.
She has good days, too. Days when Ron can get 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’s and grandchildren’s lives will be like without her.
She wrote down her life story so that, someday, when she’s gone, they can open the pages, and she’ll be there. 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.
Ron Bullaro had another idea to keep her memory alive, the kind of unusual request that Golding and her team are used to getting. He wanted a recording of his mother’s heartbeat. They helped him get it.
He also has a still photograph of his mother’s heart that was taken from one of her recent echocardiograms. He plans to frame it.
Now the family will be able to see her heart and hear it ticking, long after it has stopped.
Dealing with death daily
Golding knew in the seventh grade she wanted to be a nurse.
She knew she wanted to work in hospice when death hit home. Her husband’s uncle, just 43, was diagnosed with a brain tumor and entered home hospice around 2003, while Golding was in nursing school. Golding was moved by how the hospice team helped him and the family prepare for his death. By how his wife took charge of his care, while tending to their two small children, right to the end.
“I got to see the gift she was able to give him by keeping him home and keeping them comfortable,” she recalls. “I saw the impact.”
The experience helped steer her toward a hospice career. “I felt something,” she says. But, “I didn’t know what it meant then.”
Now she does: to care for dying patients, to comfort them and their families as they face the end, to hold their hand as they take their final breath, to prepare the body after death. It’s a privilege, she says.
People often ask how she does it. How she gets out of bed every morning, how she goes to work knowing she will have to deal with death, day after day, week after week.
She’s not sure she knows the answer. Some cases are gut-wrenching, like a 24-year-old woman who died from a genetic neuromuscular disease. She was the same age as Golding’s daughter. Another was a 42-year-old cancer patient whose weight had dropped to just 67 pounds.
“It’s hard to even imagine an adult weighing 67 pounds,” she says, shaking her head in disbelief.
Golding gets close to her patients. She wants them to trust her, to know she cares. But there must be boundaries, she says. Without them, the work would consume her. In a previous job, “I was thinking about patients in the afternoon, thinking about patients on the weekend, going to funerals, going to wakes,” she recalls.
She made some changes. She no longer sees patients who live in her ZIP code or the nearby town she grew up in. Watching someone die gets more complicated when you know the family.
She stays off social media. Looking up patients on Facebook or Instagram, seeing what their lives were like before sickness and death, can create emotional attachments that make a difficult job even harder.
“When I’m seeing these patients, I see the sickness. And I see the suffering,” she says. “But I’ve seen us make people feel so much better. That’s the stuff I really cling to. Not the sadness.”
Still there are times when the job is too much, when death barrels past her boundaries.
“We’re all human,” she says. “Sometimes we do cry.”
‘I couldn’t take it no more’
At home, in the comfort of his cluttered living room, Arthur Ferdinand is spending his final days surrounded by the things he loves.
A plastic bin, next to a fireplace, is filled with some of his favorite memorabilia: NASCAR posters, racing programs, old photos. A retired mechanic, Ferdinand is such a racing junkie that he has been to 14 tracks and worked for 20 years in the pit crew at Lancaster Motorplex, just a few miles from downtown Buffalo.
Another plastic container, this one within arm’s reach of the gray easy chair where he often rests, holds his stash of snacks: Hostess Ding Dongs, cakes, cinnamon buns, Oreos with the Double Stuf filling.
Ferdinand, 84, can indulge his sweet tooth now that his sense of taste has returned after chemotherapy.
“Boy, that is terribly tough to deal with. No smell. No taste. I couldn’t take it no more,” he says, his voice cracking, tears streaking down his face.
Golding hands him a tissue. He gently dabs his eyes.
Ferdinand has acute myeloblastic leukemia, a fast-growing cancer of the blood and bone marrow. He knew something was wrong before he got the diagnosis. He was working in his yard with a weed whacker and became so exhausted after just 10 minutes that he had to sit down.
Doctors gave him two to four months at best, so he entered home hospice in February. Now, he stays mostly indoors, in this dimly lit, slightly humid room, waiting to die. He used to putter around in his yard, but he gave most of his outdoor tools to his son-in-law.
“I know I was not going to use them no more,” he says.
He did keep a few, just in case he gets the urge to tinker. In case a neighbor needs him to figure out why her lawnmower isn’t running the way it should.
Ferdinand thinks about death every morning when he gets up. The tears flow again just talking about it.
“I’d like to die in my sleep,” he says, fidgeting awkwardly with the buttons of his beige overshirt.
He knows that decision is beyond his control.
Learning to accept death
When he was younger, Braithwaite and his buddies used to wonder what it would be like to die.
Now that he has cancer and is facing certain death, Braithwaite, 79, understands what matters most: It’s not how you leave this life, he says, but how you live it.
Braithwaite, a widower of 11 years, lives with his son and daughter. When his wife found out she had cancer, she did something Braithwaite thought extraordinary: She called 60 of her close friends and told them she was dying. Always the consoler in the family, she wanted to comfort them in their grief.
“It was,” Braithwaite recalls, “an amazing experience. For me. For her.”
His philosophy these days: Live with dignity and bequeath your children all the knowledge you’ve accumulated during your short time on earth. But there are some things you can’t prepare someone for.
“You can’t tell them how to accept death,” he says, sitting at his dining room table, across from Golding and his son, Bill.
Braithwaite takes a breath.
“I’m not sure that I’m accepting it,” he says.
“We’ll do everything we can to keep you going,” Golding tells him, pulling a stethoscope from the black bag she carries with her on visits.
Golding listens to his heart, his lungs. Satisfied, she pulls down his white socks and feels for swelling in his ankles. She turns her attention to a cut on his left shin, a souvenir from a recent fall. She dresses the wound and covers it with an adhesive bandage.
Hospice has been a comfort to Braithwaite. With other doctors, he felt pushed aside, like decisions were made without his say.
“He would cry and be upset at the doctors,” his son says, “because he didn’t feel like he was part of the team.”
The people at hospice are different: They listen.
As their hour-long session comes to an end, Golding packs up to see her next patient. It’s a relief, Braithwaite says, to have somebody “just to talk to you and counsel you.”
He grows quiet and seems lost in thought.
“We’re all here with you,” his son says.
He reaches out and gently touches his father’s arm.
Epilogue: Arthur Ferdinand died June 10 at 12:30 am. He died at home, surrounded by his family, just as he wanted.
Michael Collins writes about the intersection of politics and culture. A veteran reporter, he has covered the White House and Congress. Follow him on X: @mcollinsNEWS