Death and the family
Louise Bittinger moved to Charlottesville from White Sulphur Springs, West Virginia to be closer to her daughter. She’d been on her own since she was 13, married at 15, and had raised seven children with her husband of 59 years, who died of cancer in 1995. Suffering from debilitating arthritis, she was having trouble taking care of herself, so she sold her car and her home and moved into an apartment here, where Thompson and two of her siblings could take turns shuttling her around and visiting with her. It was important for Bittinger to be in her own home.
“I guess it’s just because I’m an independent person. I hated to give up my independence,” she said. “All my life I could have lived alone and it wouldn’t have bothered me a bit. It’s just my makeup.”
But things in life don’t always go according to plan. Bittinger’s health got more complicated.
“I’ve had every surgery just about that a woman could have,” Bittinger said.
Her story is typical in that her illness, her Medicare, and her age make her an example, but her story isn’t typical for hospice in other respects. First of all, she has children who are close by and willing to work hard to make her comfortable, which means staying at home works well for her. She also had a primary care physician who was willing to recommend hospice as a solution.
“I probably err on the side of bringing it up earlier because in my experience it’s been more useful early,” Campbell said. “The beauty of being a primary care doctor is if I’ve known a patient a long time and know what they want and know when they’re tired, I can sometimes be the advocate for the patient even when their family members are saying, ‘No, we want grandma to go back to the hospital and get everything done.’”
The case that Avery wants to make, knowing full well it’s indelicate and not at all palatable to the public, is that dying well takes time.
“Hospice is not about pain and symptom management. It’s really about dying well. About dying how people want to die,” Avery said. “At home, with family around, hopefully comfortable, with spiritual care. I think we’re the only program besides possibly the military that the federal government requires a chaplain be assigned to every case.”
In Bittinger’s case, in return for the $140 per day from Medicare, Hospice of the Piedmont furnishes her with a team of people capable of providing a wide range of services designed to make her life at home comfortable.
Volunteer Diane Horan comes to the house once a week to clean. Hospice aide Rosemary Flynn comes three times a week to bathe Bittinger, take her temperature, and perform everyday tasks. Medical nurse Christine Rogoskey, the team’s point person, makes sure her medicine is right, stays on-call in case of an emergency, and communicates regularly with Campbell. Social worker Sarah Gilliand comes once a month to check in on Bittinger’s well-being. And a chaplain, Greg Compton, is available to talk about dying and to communicate with her church congregation.
The organization also supplies Bittinger with all of her medicines, medical supplies, a wheelchair, a hospital bed, and oxygen.
“We’ve not had to go out of pocket for anything,” Thompson said.
In many ways, the hardest part of the process was getting over the idea that choosing hospice meant giving up on life. But Bittinger, who’s a person of strong faith, didn’t see it that way. She initiated the conversation with Thompson, who described her mother as her best friend, even though she knew some of her children were against the idea.
“Ever since her daddy died and that was in 1995, we’ve talked about death a lot,” Bittinger said. “We don’t shy away from it. Now some of ’em do, but the three that’s here today, we joke.”
Blackhall believes the stigma around end of life care is irrational. Studies have shown that patients with chronic progressive illnesses, including cancer, actually live longer in hospice care.
“I think the way it’s always been framed is you can choose comfort care or you can choose to live long. Right, quality or quantity?” Blackhall said. “But I think what’s emerging is that that’s really not true. Any treatment that makes you feel better prolongs your life.”
Again, Bittinger’s experience has been true to form. When she entered hospice, she was in serious pain from her arthritis and back fractures and her health was failing rapidly. She was extremely resistant to the idea of taking narcotic painkillers, but over the course of a few months, she finally acquiesced.
“I kicked and screamed. I didn’t want to go on narcotics. I’d seen too much of the results of it. But now I’m glad. I think things over but when I make a decision I seldom change it,” she said.
Rogoskey, who’s in charge of managing Bittinger’s pain, said it takes time to find the right pain management formula.
“It’s important to them to be as alert and oriented as possible and sometimes pain medications make you a little loopy,” she said. “It’s a balance of trying to make sure the patient is comfortable and as alert as they want to be. A lot of times it’s trial and error.”
Flynn, a red-headed Irish woman from the New York suburbs, has spent the most time with the family.
“She’s family. We’ve accepted her. She and all the nurses are just part of us,” said Pauline Legg, one of Bittinger’s daughters.
Flynn works with about 10 patients at any given time and she’s been with Hospice of the Piedmont for six years. Her accent and quick manner of speaking is a stark contrast to Bittinger and Thompson’s deliberate and stoic high country way. Watching them sit on a couch together, trading stories and tearing up, you realize how personal the business has to be.
“It took me a little while to get in here. We sort of had to ease our way in and they said ‘Louise is the boss and she wants things done her way,’” Flynn said. “And that’s fine with me. You have to let each person be the guide.”
Flynn decided to work in hospice after watching her brother die in hospice care. The job is a passion project. She had worked in health care for two decades, spent time in nursing homes, but she said she wasn’t happy until she found this line of work.
The approach she takes, she said, relies on listening, and involves finding little things out, like the fact that Bittinger can’t stand other people touching her hair.
“Maybe it takes me longer to give a bath but I don’t care. If we need to talk, we talk. If she needs to stop and go to the bathroom, then she goes to the bathroom. It’s whatever she needs,” Flynn said.
A hospice care team is designed to deal with the four types of suffering identified by the founder of the hospice movement, Dr. Cicely Saunders: physical, emotional, spiritual, and social. The unit of care for the hospice benefit is the family, not the individual patient. So grief counseling is part of the treatment.
Thompson’s 12-year-old son Joseph participates in Hospice of the Piedmont’s Journeys Program, which helps young people process the deaths of their relatives.
“It helps you talk about how to move on after they’ve passed. It helps you learn to not just keep everything to yourself but talk out and talk to others about it,” he told me.
He made a banner that hangs over his grandmother’s bed that depicts her journey to heaven. Part Jacob’s ladder and part stairway to heaven, it’s a child’s vision of the hereafter and, now, one of Bittinger’s prized possessions.
Thompson said she’s enjoyed watching her son in the program.
“I think it was a really good thing. I didn’t even know about Journeys and they explained it to me how it works when they found out I had a young son and I agreed to do it,” she said. “At first it was like, ‘Mom, I don’t need anybody, I don’t need anything,’ but once he got into it, it’s been a good thing.”
Thompson still chokes up when she thinks about her mother dying, but she has made her own peace with it. Her father was in and out of the hospital for the last nine months of his life and only made it home for the final 12 days. Her mother has been home for a year and they have had plenty of time to talk.
“She’ll be in a much better place and there won’t be any suffering or shortness of breath and sometimes fighting for every breath you’re taking, like she does,” she said. “She’ll be at peace and that’s just the way it’s going to be.”
As a daughter, she said the greatest part of the family’s experience with hospice has been the reassurance her team has provided.
“Whenever they get ready to leave, they always say, ‘If you need us, then call us. Don’t wait,’” Thompson said. “To me that is an awesome feeling. To be able to know I don’t have to wait until they come back for the next visit if I have a question about anything.”
Thompson and Bittinger know their case is not typical. Not every hospice provider is the same. No two families are alike. They have a special mother-daughter relationship. But they are clearly satisfied with their decision. They planned to have Thanksgiving dinner at the clubhouse of the apartment complex and they weren’t sure if it would be their last together.
“I feel like I’ve got the Lord in my heart. I’ve served him for years. I know that I’m ready to go. I’ve paid for my funeral in advance. Everything’s picked out,” Bittinger said. “I’m comfortable with it. Some people don’t understand it, but that’s the way I feel.”