Hospice care is about living well for the time that remains, not giving up

(Aging Untold) — When many people hear the word hospice, they think it means giving up or that the end is near.

But more than 1.5 million Americans receive hospice care each year, and it’s not about dying — it’s about living well for whatever time remains, according to the Aging Untold experts.

Amy O’Rourke, an aging expert, said Medicare covers hospice services for eligible patients.

“If you’re Medicare-eligible and you’re on traditional Medicare, you can get hospice and it’s free,” she said. “So, you get services that are provided. You get a free doctor, you get a free social worker, you get a free chaplain, you get your medicines that are related to your diagnosis covered, you get equipment and supplies.”

Eligibility and reevaluation

Sam Cradduck, a gerontologist, said choosing hospice is often the best choice patients can make for themselves and their families.

“We aren’t immortal. We are going to pass away, and we’re going to go through that final sunset,” she said. “And you need to be able to do that on your own terms. And nobody wants to do it in a lot of pain.”

One common myth is that hospice is only for people who have days or weeks to live.

Patients must be given six months or less to live to qualify for hospice care and they must be reevaluated every six months to continue receiving services.

Katherine Ambrose, an aging-well coach, said one of the challenges is that people wait too long to let hospice come in.

Patients have the right to investigate and select the hospice company they want, she said. They can revoke hospice at any time or transfer to another company.

“So, you are in the driver’s seat, not the hospital, not anybody else,” Ambrose said.

What hospice provides

Hospice represents a shift in care for someone who will not be cured, focusing on comfort, dignity and quality of life.

“It doesn’t mean that you’re pulling the plug or you’re walking away or withholding anything,” Dr. Rhea Rogers, a board-certified physician, said.

If a person in hospice care is doing better at six months, they can be discharged, she said.

“I’ve seen it oftentimes where people will improve, so that criteria is at the rate of decline, at the way my condition is declining today, I’m expected to live six months or less,” Cradduck said. “If three months in I start improving miraculously, I can be discharged and I can graduate from hospice and go on and a year later, or on down the road, need it again.”

If a hospice patient needs hospital care for an unrelated issue, such as a broken hip from a fall, they go off hospice and back on traditional Medicare, and then can return to hospice afterward, O’Rourke added.

Hospice services are provided wherever the patient is located, whether at home or in a hospital, Ambrose said. After a patient dies, hospice companies are required to provide 13 months of bereavement services to families.

“It’s not about giving up. It’s about getting some extra help,” Ambrose said.

Understanding limitations

One source of frustration for families is the misconception that hospice provides 24/7 caregiving.

“There is a lot of support that comes with hospice,” Cradduck said. “But it’s not your 24/7 caregiver. It’s not the person that’s coming in and doing the feeding assist. They’re nurses, they’re bathing aides, they’re running supplies. They’re doing all the things that they can, but you may still need some outside support.”

For patients on hospice, calling the hospice company instead of 911 during a medical event is one way to avoid hospital stays.

“In this country, if you’re on hospice it’s the only absolutely sure way to stay out of the hospital,” O’Rourke said. “Sometimes I’ve had people say, ‘I just can’t stand another hospital stay. I don’t want them picking, picking me apart. I want to stay home.’ Well, let’s go on hospice so that doesn’t happen to you.”

Hospice care is appropriate when a patient has a serious condition and treatment will not help or when treatment is more of a burden than a benefit, Rogers added.