When faced with a terminal illness, some people might choose to fight it. But increasingly, doctors and patients are taking a different tack: Instead of creating a battle plan that focuses on the illness, they create an approach that emphasizes patient goals.
This attention to quality of life is called palliative care, or, in the final stages of an illness, hospice.
This story is part of “In This Life,” our series on aging.
At least once a week, Dr. Rob Hunold practices medicine the old-fashioned way — he makes house calls.
Hunold is a family medicine doctor at LincolnHealth in Damariscotta, as well as the medical director of hospice. His first stop on this day is to see 87-year-old Bill Pierce.
“Who has been to my house several times — he likes to deliver gifts, and he likes to make things like crafts and likes to come over and bring them to my house. Unfortunately, he came into the emergency room about six months ago with a cough and was diagnosed with a large mass in his lung. And so he is dying, and we are helping him stay home with hospice services,” Hunold says.
Pierce sits in a big, comfy chair. Blankets cover his lap and his shoulders. The purpose of Hunold’s visit isn’t just to check on Pierce’s physical health. He’s also here to check on Pierce’s goal to stay at home — to see if it’s still what he wants, and if it’s still possible.
“I’m a little worried about you Bill – you don’t look good today,” he says.
“Just growin’ old, that’s all. These people around me are treating me pretty good,” Pierce says.
Pierce’s wife is here. So is his daughter, who’s worried because her mom is exhausted from caring for Bill around the clock. Other family members step in where they can, but they don’t live close by.
The question in the room is whether the family can still manage to care for Pierce at home. As a hospice physician, Hunold walks a fine line to balance the needs of the family with those of his patient.
“I definitely think that we need to basically come on with everything we can think of to keep him comfortable and keep him here. I think we’re getting close here. I think we’re approaching end of life. I want to do everything I can to support the family to keep you here, because that’s what you asked for at the beginning of all this, right?” he says.
“Yeah,” Pierce says.
“So, I know it’s stressful, and I know it’s a lot of moving pieces, but I guess I would encourage you to try to do what we can do. I’m not saying we need to do that for the next six months. I’m thinking we need to do that for the next several weeks. I think that’s your time,” Hunold says.
As the reality of the situation sets in, Pierce’s wife, Jeanette, starts to cry.
“None of us can live forever, I guess. And you’ve got to accept it, and I’m trying,” she says.
Jeanette says having her husband here in his final days, in the house they’ve lived in for more than half a century, means everything.
“We’ve been together 58 years, and I just want him home with me. We’ve had a good life, and I know he can’t get better, and I don’t want him to suffer, but I’d like to have him stay here with me as long as possible,” she says. “I’m being selfish, maybe, but I’m being honest.”
But Bill wants to be home too. To continue to meet that goal, Hunold says he can bump up the hours of a nursing assistant who visits the family. He’ll also look for volunteers to help.
This chance to make Pierce’s life better in the face of a terminal diagnosis is what drew Hunold to hospice care. He says he realized this calling as a young resident, after watching patients die in a hospital emergency room. At first, he found it exciting to respond to patients who, in medical lingo, “coded and were in cardiac distress.
“But it never worked,” he says. “We were doing CPR on people who obviously weren’t going to survive. These were old, sick people. And we had one code where I just think what we did felt so bad. I remember walking out and I went to my medical director for the residency, and I said, ‘I’m not quite sure this is for me. I don’t really like doing this anymore. I don’t like these codes and what we’re doing to people.’ And he said, ‘Do you want to experience a different way of dying?’ And I said, ‘Yeah, I want to see people die differently.’“
Even though providing hospice care means bearing witness to heartbreaking goodbyes, Hunold says for him, the experiences reinforce the value of a life well spent.
“Bill did something right, right? He’s got a wife of, I don’t know, 60-something years. He’s got a daughter who is willing to take care of her father. He did something right,” he says.
One week after Dr. Hunold’s visit, Bill Pierce died. He was at home with his family at his side, Hunold says, holding his wife’s hand to his face. It was the life he wanted.
Maine Public Radio’s series “In This Life” is made possible by a grant from the Doree Taylor Charitable Foundation.