Patient advocacy roles even more important in complex health care world
In the last four months, Oak Creek resident Natalie Storie has been treated in three Front Range hospitals, and has gone from walking to being in a wheelchair and unable to speak due to a devastating diagnosis of ALS.
Her husband of 34 years, Allen Storie, a retired environmental consultant, has been his wife’s primary caregiver. He hasn’t been sleeping much.
“It’s not easy. It is tough,” Allen Storie said from the couple’s new home in Fort Collins, where Natalie was moved earlier this week into an assisted living center with skilled nursing.
Through a referral from a nurse, Storie hired longtime Routt County resident Deborah Batson, a board-certified patient advocate, who has been helping the couple for weeks. Storie is happy to spend time with his wife rather than on the phone for complex insurance and medical calls.
“Having Deb on board was huge,” Storie said. “She was able to take a lot off my plate. I’ve got a whole lot of moving parts when you get a diagnosis such as ALS. Even with being retired, there is just not enough hours in the day, especially if you are the primary caregiver.”
As an independent patient advocate, Batson may stay in a hospital room with a patient for long hours waiting to take notes and ask questions during a doctor’s visit, or other times she takes phone calls throughout the day to help manage a patient’s transfer to a care facility.
Whether the position is called patient advocate, patient navigator, case manager or care manager, family members say the role is becoming more important as the health care system becomes more complicated.
Batson has helped to navigate and better understand the medical world for families facing issues ranging from long COVID to cancer. She talked about the advocacy work as one of the speakers during the UCHealth Yampa Valley Medical Center lunchtime education series “Planning for Life Transitions” in April and May.
“One of the reasons that I am a patient advocate is because many years ago, a member of my family wasn’t taken seriously when they had what turned out to be a critical, life-threatening illness,” Batson said. “I work directly for the patient and family, advocating on their behalf, helping people learn to strongly advocate for themselves when they need medical care.”
Batson said advocates help amplify patient and family voices and values that can be overlooked in the efficiency of large health care systems.
Longtime Routt County resident MB Warner called on Batson for help to simplify the medical “jungle” as her husband, Jim, battles prostate cancer.
“I needed more because I was going crazy because things were convoluted,” Warner said. “She just calms you down and makes you feel better about everything. She is so amazing, and she knows so much.”
According to the National Cancer Institute, a patient advocate helps patients communicate with their health care providers so they get the information they need to make the best decisions for their health. The advocates may help patients obtain financial, legal and social support.
A registered nurse for 17 years at Yampa Valley Medical Center, Faith McClure works as part of the hospital’s care management team, helping patients and family as an advocate during hospital stays. The team includes two full-time, one part-time and six per diem staff care managers, all of whom are registered nurses.
McClure explained that a care manager meets daily with every patient staying in the hospital to see how they may need help and offer assistance for a care plan.
“As care manager, we are patient advocates,” McClure said of the free service. “We try to advocate for what the patient wants.”
The care managers may help a senior citizen who had knee replacement surgery or a patient addicted to alcohol needing a treatment center. They may assist with a complicated case from the Emergency Department or help a young new mom in the Birth Center. They answer questions, hold many hands, procure equipment, find resources, and facilitate connections to outpatient therapy, home health care, and community services.
“If you are in the hospital, we do that calling for you and get you on everybody’s radar,” McClure said. “Care managers try to make sure everything is ready to have the best discharge you can have.”
Regular hospital nursing staff help primarily with medical needs, usually on a ratio of five patients to one nurse, McClure said.
“The hospital can be really anxiety-provoking for some people, so you just pull up a chair and sit down,” McClure said. “If patients are older, they just don’t understand how things are working now.”
Batson’s other current effort is reinstating the nonprofit Galen’s Gift, which is named after her son who died. The nonprofit, which is hoped to be operating by July, would help defray the costs of an independent patient advocate for people who need help.
“My main and most emphatic tip,” Batson said, “is don’t go to the doctor or a procedure for non-routine care by yourself. Always take someone to act as your second set of eyes and ears, and as a scribe.”
To reach Suzie Romig, call 970-871-4205 or email sromig@SteamboatPilot.com.
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