When a loved one refuses treatment: What families need to know

(Aging Untold) — When an aging parent or loved one says no to medical treatment, it can feel alarming — but that decision is often rooted in something deeper than it first appears.

The Aging Untold hosts break down what’s really driving these moments and how families can respond with patience instead of panic.

“Slow down and listen”

When a loved one refuses care, the instinct for many families is to push back immediately. Amy O’Rourke, an aging expert, says that reaction can make things worse.

“I think the first thing I would advise is to slow down. Take a deep breath and listen. Listen really carefully,” O’Rourke said. “What are they afraid of? What are they trying to avoid? What are they fighting for? Where are they emotionally? And then start there.”

O’Rourke cautioned against rushing toward a predetermined outcome.

“Don’t be quick to cut them off. Try to get a certain outcome in place. Just slow everything down,” she said.

She described working with a family where tensions boiled over.

“I worked with a family where they were in the middle of this discussion, and one of the kids just flipped out and called 911,” O’Rourke said. “And the ambulance came and she got in the ambulance, and the mother looked at me and she goes, ‘I don’t want to go. I don’t want to go to the hospital.’ And it was an awkward moment, but she got out of the ambulance.”

O’Rourke said the situation didn’t have to escalate the way it did.

“It was one of those things where it was a crisis when it didn’t need to be, if they just slow down and started listening earlier,” she said.

Understanding what’s really being said

Dr. Rhea Rogers, a board-certified physician, agreed that slowing down is key and said families need to dig into the “why” behind a refusal.

“I think you’re right in terms of slowing down, listening and understanding, what is the person really saying?” Rogers said. “They’re not saying, ‘I don’t want to be treated’ necessarily. There’s something underlying that’s driving that value for them.”

Rogers said refusing a specific treatment isn’t the same as giving up.

“Not being treated and refusing treatment doesn’t mean that you’re saying, ‘I choose death,’” Rogers said. “You have to understand what is surrounding the decision that this person is making about how they want to live.”

Sometimes the person is looking at the medications along with the side effects and weighing all those different things, Rogers said.

Gerontologist “Sam” Cradduck framed the decision as an act of self-determination.

“This is ultimately self-care in the most complex form. You’re taking care of yourself,” Cradduck said. “It may not line up with the way you would take care of yourself, but it’s the way I’ve chosen to. And maybe it’s based on seeing my own parent suffer through a treatment that I don’t want to have to endure.”

Clearing up misconceptions about hospice

Cradduck also pointed to hospice as an example of a widely misunderstood form of treatment.

“We see this one a lot where we think, oh, hospice, I’m not going to ever use hospice because they kill people. That’s what unfortunately a lot of people believe,” she said. “The reality is, to be part of hospice, you are already terminally ill. So hospice isn’t killing you. It’s providing comfort while you’re dying, while you’re going through that final sunset.”

Cradduck said this misunderstanding comes up often in counseling families.

“I’ve counseled with so many families where they’re like, ‘Oh, I would never have hospice,’ which is a form of treatment,” she said.

Rogers said hospice doesn’t mean the end.

“We were always taught hospice means the end ... but hospice means you get additional services, you get support, and it doesn’t mean it’s the end,” she said.

Cradduck added that belief systems can lead people to decline care that may benefit them.

“Based on belief systems, people will refuse treatments, and they’ll turn down something that maybe is to their benefit,” she said. “So sometimes just listening to why, and then giving good counsel, but honoring the person’s belief system regardless — I may not agree with you, but you have a right to choose your own destiny.”

Asking the right questions

The experts said families should make sure a loved one’s decision is based on accurate understanding, not a misconception.

“Asking questions to uncover what it is — so the questions behind the decisions and the opinions. Is there more information that could be provided? Is there more conversation that could be had that would make it a little bit easier to either understand their position, or for them to maybe make a different decision once they’re educated on it,” Ambrose said.

Rogers said that clarifying conversations give everyone a chance to understand each other.

“Clarify, because you could clarify whatever they’re saying. That’s your opportunity to clarify for misunderstanding,” the host said.

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