Hospice: A Service That's Often Misunderstood and Under-used at End of Life

Nov 17, 2016

When she first heard about hospice care, Yarmouth resident Christine Greeley was dubious.

“I mean the term ‘hospice’ was kind of scary,” she said. “It really was like, ‘That’s for people who are dying next week, tomorrow, or something. This is the end of it, it’s going to be terrible.’”

But Greeley had two elderly parents suffering from a variety of worsening illnesses. So she got over her fear and made the call. That same day, she remembered, a hospice worker came to the house, and her mother was admitted into hospice care. A hospital bed arrived, her mother’s medications were sorted out, and Greeley suddenly felt a weight lifting she didn’t even know she was carrying.

Twenty percent of deaths in the U.S. occur in the intensive care unit, according to the National Institutes of Health. But surveys show that many Americans say they’d rather die at home if given the choice.

Hospice is a service that can help terminally ill people live out their final weeks and months more comfortably in their homes. In the next installment of our series “Our Mortal Lives: Confronting Death and Dying,” WCAI’s Kathryn Eident explores why some people avoid hospice care, or only seek it out in the final days of their lives.

“It gave me some relief,” she said.  “It was like, ‘I don’t have to worry about them tonight, I can go to sleep.'’’

Greeley’s mother spent several months on hospice, and actually improved at one point, before her father then took a turn for the worst. Greeley knew what she had to do.

“So there was no problem at all when his doctor said to me, ‘You know, I think we need to think about hospice.’ I said, ‘Ok, call them,’” she said.

Her father spent two months on hospice care before he died; her mother died shortly after. Hospice services didn’t end with their deaths, though. Social workers and chaplains were there to help Greeley through some of the tougher times.

“I found myself numb heading into Christmas. It was like all our family traditions—what do I do now?” she said. “I wound up in grief counseling. It was perfect. It got me through. I wound up accessing all my fun sort of memories and great things.”

More than 1.5 million people use hospice care every year in the United States. It’s actually a Medicare benefit; it covers patients at any age with a diagnosis that gives them six months or less to live. Patients can go on and off hospice depending on their needs and desires. Those who use up the six-month benefit can be re-evaluated and stay on hospice for much longer, sometimes up to years longer.

But, nearly half of the patients who take advantage of hospice do so for only about two weeks. For some, it’s even less than that. This, when research has found that patients who use hospice can sometimes live longer, and with a better quality of life, than those who are admitted into the hospital.

I've come to believe that hospice is really about learning how to live. —Christine Greeley

For Greeley,  her experience with hospice gave her new a perspective on death.

“I’ve come to believe that hospice is really about learning how to live,” she said. “It’s not this horrible death sentence or something. Instead it’s like maximizing the time you do have, and in ways that you can be so supported.”

Hope Hospice nurse and educator Ellen McCabe says people often cringe at the word hospice because they associate it with death. She says part of the reason is people don’t understand the meaning of palliative care, which is the kind of care hospice provides.

“Palliative care is designed to alleviate symptoms that impact quality of life,” McCabe said. “For instance, we don’t have the ability to change the course of the disease in general, but we are improving somebody’s quality of life from all planes.”

Take, for instance, when a small child falls and hurts a knee.

“The Band-Aid I put over my child’s boo-boo that I can’t even see is palliative care,” she said. “His hurt may be physical, or it may be existential. But the fact that I give him comfort, that’s not necessarily going to change how anything heals, but it’s going to make someone better able to cope.”

Neil Blair has experienced this himself. The 89-year-old Sandwich resident has been on, then off, hospice care during the past year. He lives at Decatur House, an assisted living facility, in an airy apartment adorned with family photos and filled with furniture from his former home. Blair is happy to be here.

“I sit here and enjoy it. I like to look out,” he said. “I couldn’t ask for more.”

Blair went on hospice last year after his wife of more than 65 years died. Hospice meant that Blair no longer had to leave the house for doctors’ appointments; they came to him. Volunteers visited to socialize. Social workers checked in, too. With that circle of care around him, Blair’s health improved—so much that he no longer qualified for hospice services. Ironically, both Blair and his son, also named Neil, look at this improvement as sort of a catch-22.

“Honestly, we didn’t want him to go off hospice,” the younger Blair said. “There’s a lot of peace of mind that came with hospice.”

The elder Blair agreed. Now they’re thinking it might be time for the elder Blair to go back on hospice care. His health is again on the decline, and he’s recently taken some bad falls.

"We know the folks at the Cape Cod emergency room very well, some of them by first name,” the younger Blair said. It’s all part of caring for someone who is elderly, he added.

“He gets better, then he has a setback, so you have hospice, then you might have VNA,” he said. “But you’re always re-evaluating where he is, or reacting to an event. That’s what’s so great about these organizations. They realize there’s an ebb and flow to the situation.”

Blair also said the choice was made easier because both his parents talked about their wishes and included their four children in the discussions. The elder Blair agreed. He’s at peace with the end of his life.

“When it’s time, it’s time. And I’ve just had a damn good life,” he said. “Can’t ask for more than that.”

And with hospice, Blair can enjoy more moments like this outside the hospital, in a place surrounded by the people and things he loves.