Hospice doesn’t have to happen at home

(Aging Untold) — Hospice care is often misunderstood as “giving up,” but it’s really about comfort, dignity and quality of life.

For some families, that care doesn’t have to happen inside the family home — and knowing the alternatives can take the pressure off an already difficult decision.

“There’s no right or wrong”

“I like to take all judgment out of it. There’s no right or wrong. There’s no one way,” Amy O’Rourke, an aging expert, said. “People have very strong feelings about dying and how it should look.”

O’Rourke shared the story of a young client who wanted to die in a facility rather than at home, despite his sister’s wishes.

“What it was is he felt safe in a facility, community where there were nurses around, machines around,” O’Rourke said. “He felt less anxiety in that setting, and that was really what drove that.”

She said families should weigh care, safety and cost, but also check their own assumptions.

“Really take the heat out of the conversation by knowing what are your values and are you imposing that on your loved one?” O’Rourke said.

Hospice can follow you anywhere

“I’ve seen a lot of cultural issues where having someone pass in your home isn’t what the family wants,” “Sam” Cradduck, a gerontologist, said. “Going through that final sunset doesn’t have to be in your house. It can be in a community. It can be in independent living.”

She said she’s even seen families rent apartments in independent living communities specifically to set up hospice care outside the home.

“For me, it’s whatever brings comfort to the family,” Cradduck said. “At this point, we’ve got to make sure that the person’s comfortable, that they’re being provided the care and the dignity they deserve.”

She said the decision often comes down to whether a family can live in a space afterward.

“It really comes down to, am I going to be able to walk into my living room if that’s where I lost my spouse?” Cradduck said. “Or is it easier for me to remove that setting from the place I’m going to continue? And what if I have small children in the home or my grandkids are there frequently?”

Hospice means support, not a location

“One of the biggest things is people have to define and make sure that they understand what hospice is, and it doesn’t mean the end, doesn’t mean you’re giving up,” Dr. Rhea Rogers, a board-certified physician, said. “It’s just to provide additional services when people need it. And it’s the philosophy of comfort.”

Hospice can be delivered in a hospital, in independent or assisted living, or in a private home — it isn’t tied to one setting, the Aging Untold experts said.

“It doesn’t define the location,” Rogers said. “We all make these choices about what we want, what we’re living. We should be given the same choice about how we want to die.”

Katherine Ambrose, an aging-well coach, also addressed concerns about a death affecting a home’s value.

“I’m very used to people calling and asking if anyone’s ever died in that home. I wouldn’t want people to worry that it would affect your real estate value,” Ambrose said. “The only time I feel like it really makes a difference is if there was a traumatic death where the home is psychologically impacted or stigmatized.”

Plans can change — and that’s OK

“Many people want to die peacefully at home. That’s their wish, but sometimes there has to be a change of course,” Ambrose said. “Just like a childbirth plan — you might have a plan, but then you might have to change your plan. Because if you can’t control the pain or something changes, then you might make another decision.”

Morphine eases breathing

Cradduck said medications commonly used in hospice are frequently misunderstood.

“Morphine is used for many good reasons,” Cradduck said. “One, to open up airways, to help you breathe easier. So when you’re passing, the struggle to breathe as your body is shutting down — a lot of people don’t realize that the medications that are used are to prevent those struggles.”

“Morphine is not just a pain medication,” Cradduck said. “Oftentimes it is used to allow you to breathe easier because it relaxes and dilates.”

She added that other medications serve specific comfort purposes as well.

Key takeaways

• Deciding on end-of-life care is a deeply personal decision — there’s no single right answer.
• It’s OK if home does not feel like the right setting for hospice care.
• Hospice can be delivered in clinics, specialized communities, independent or assisted living, hospitals or inpatient units — it is not limited to one location.
• Focus on comfort and where you and your loved one feel safest.