The hospital may not have called it a “futility judgment” when they pushed Chris Dunn to go into hospice as an alternative to spinal cord injury rehabilitation, but it’s hard to see it any other way.
Here’s an extended excerpt from United Spinal Association’s New Mobility article “Refusing To Die: The Chris Dunn Story“:
By all accounts, Chris had a complicated situation. Using a ventilator alone limited the number of rehab facilities willing to consider him, but his injury had also left him mostly blind and necessitated the installation of a pacemaker and feeding tube.
“Carol [Dunn’s mother] felt like he had originally been denied from some rehabs because of his medical condition –because he had a lot going on,” says Wierbicky. “She thought they’d be able to revisit things and get him into rehab when he was more stable.”
When Carol kept getting rejected and hospital staff and administrators started suggesting alternatives and that she consider hospice, she grew frustrated.
“People kept shutting the door without even trying, without even giving us a chance,” she says. “That’s unacceptable to me.”
Wierbicky agreed. “It’s always shocking to me when we see cases where that doesn’t happen,” she says. “It became clear to me through this case that people living in rural states that don’t have dedicated spinal cord injury programs and those who are on ventilators are in an especially vulnerable position … all she ever wanted was for him to be evaluated by people who understand his condition. That seems like a very reasonable goal.”
“I’m not a fighter, but I never felt like I had a choice,” says Carol. “It wasn’t right and I wasn’t going to let it just sit.”
Working together, Carol and the United Spinal Resource Center team took the fight to get Chris into rehab to the next level. They enlisted Disability Rights Maine, state legislators and federal representatives and turned over every stone trying to find a suitable facility. They held weekly phone calls with hospital staff and MaineCare, the state’s Medicaid program.
Drugged up and confined to bed, Chris waited while dealing with a hospital staff that didn’t know what to do with him. “There would be nurses that would come in and tell me, ‘You know you’re making your son suffer,’” says Carol. “I mean, what’s a mother to do with that?”
Thanks to the relentless team effort and Carol’s fortitude, by early April, Shepherd Center in Atlanta was reemerging as a possible destination for Chris. Carol had looked into Shepherd earlier and been told it wasn’t an option because of Chris’s insurance, but after much wrangling they came to an agreement.
To read the whole article with photos and find out what happened, go here.
And to learn more about how futility judgments and policies endanger people with disabilities, check out the National Council on Disability bioethics series report, Medical Futility and Disability Bias.