'I was trying to advocate for my mom': One family's fight for a patient bill of rights in Oklahoma
One family is advocating for patient rights at the state capitol to honor the life of their loved one and create change through the legislative process.
Alissa Cartwright’s mom, Lori Brand, had struggled with health issues for over a decade. When she needed to be hospitalized in 2020, Cartwright was at her bedside. But as COVID-19 became a pandemic, things changed.
“I was in the hospital with her one day and everybody came in and said ‘you have to leave and there’s no exceptions,’” Cartwright said.
Since Lori’s condition was worsening, the family sought special permission from the hospital to stay with her.
“The condition was that I had to be in her room night and day, like couldn't even leave her room to go out into the hall or anything. And so I stayed with her for nine days until she was eventually released. And she was home for about four days,” Cartwright said.
After that, Lori’s condition got even worse and she needed to return to the hospital. This time, there was no special permission. Lori spent several days alone in the hospital. During this time, Cartwright said she and her family received little to no communication about Lori’s condition.
“Eventually I got a call in the middle of the night asking if she had a do not resuscitate,” she said.
At this point, Alissa’s older sister and her dad, Gerald Brand, were allowed to see Lori. She died shortly after.
“In the months following her passing, we were able to kind of ruminate and sit on everything that had gone on,” Cartwright said.
In addition to poor communication, Cartwright said she was treated poorly by hospital staff for asking questions about her mom’s condition.
“Some of the physicians there asked if I had a degree. I was called a Dr. Google, which I found very offensive just for the fact that I was trying to advocate for my mom,” she said.
As they reflected on their experience, the family felt like they were at least owed an apology and that something needed to be changed. Cartwright said the hospital was cooperative at first but eventually stopped communicating with the family. That’s when her dad started to seek other avenues.
“I just reached out to Representative Echols and his assistant, Kaye. I said, ‘I’d really like to have a true patient’s bill of rights for Oklahoma.’ And he said, ‘Okay, well we can draft something,’” Brand said.
They came up with House Bill 1013, titled the Lori Brand Patient Bill of Rights Act; a list of 30 rights for patients in Oklahoma hospitals, including the right for a patient to receive visitors.
Brand said he took time away from running his racing engine business to go to the state capitol every week during the legislative session to speak with lawmakers about the bill.
“People recognize me now. They, you know, talk to me and I go in their office. They want to know how things are going,” he said.
While the bill went on to pass unanimously on the House floor and 10-2 through the Senate Health and Human Services Committee, Brand said the bill received pushback from the Oklahoma Hospital Association. After that, the bill stalled.
Cartwright and Brand were disappointed by this development. While Republican Representative John Echols, who authored the bill, shared in their disappointment, he also has hope they may be able to pass the bill in a future legislative session.
“I still think while we didn’t get it across the line this year, there has to be a way to change the health care system in a way that is more pro-patient focused,” Echols said.
Cartwright and Brand have been working on this bill for upwards of two years. At the same time, they’ve been attempting to do the difficult work of grieving a loved one.
Cartwright said advocating for the bill has extended the process of grieving her mom.
“It was incredibly hard to be at the hospital by myself. And so, kind of dealing with that experience all wrapped up with losing my mom and then trying to get answers and then, you know, advocate for her even though she’s not around anymore is really hard,” she said.
Brand said his time advocating for the bill at the Capitol has taught him how to coexist with his grief.
“Getting the bill passed is my way of, you know, honoring my wife and making sure other people don’t have to go through so many things to get answers. And maybe make their grieving process easier,” he said.
While the Lori Brand Patient Bill of Rights Act did not pass this legislative session, her family will continue to advocate for patient rights in her memory.
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