Jerry Gabay has spread the tragic story of his daughter’s suicide with legislators for several years, but now with the help of Rep. Alissa Keny-Guyer, D-Portland, he has worked to channel his sorrow into legislative action aimed to mend gaps in the state’s broken mental health system and prevent another Oregon family from enduring his fate.
The House Health Committee heard three bills last week that will require hospitals to do a better job coordinating care and crafting an outpatient exit plan for patients suffering from a mental health breakdown in an acute setting, as well as encouraging better communication about a patient’s prognosis and treatment plan with supportive family members.
Gabay’s daughter, Susanna, had a series of breakdowns in the final years of her short life, and was in and out of a series of hospitals, often with little coordination of care, starting as a high school junior in Hood River until she reached her junior year at the University of Oregon and spent one last stay at Sacred Heart Medical Center in Eugene.
“Her discharge plan was minimal,” Gabay told the House Health Committee. “The only follow-up appointment the hospital made for her was with a psychiatrist 30 days after she left the hospital. One month after her discharge, one day after missing her appointment, she took her life.”
House Bill 2022 requires hospitals and residential treatment facilities to provide psychiatric patients with case management services that will link them to an outpatient treatment program when they are released. It also requires health insurance companies to pay for this service.
House Bill 2023 requires hospitals to develop a regular protocol for handling patients in a behavioral health crisis, including a plan to link the person to a supportive friend or family member who can help them manage their treatment.
The last bill in the package, House Bill 2948, aims to make clear to emergency room professionals that the federal privacy law known as HIPAA does not prevent them with sharing broad-level information to family members; the only thing it strictly prohibits sharing are detailed notes from therapy sessions.
Proponents were clear to state that this information would only go to someone with the patient’s consent, and not be given to someone who may be fueling their behavioral health crisis. Gabay believes such a law could have prevented his daughter’s death by keeping he and his wife better informed about her turmoil and treatment.
The Oregon Association of Hospitals and Health Systems is opposed to the bills that require an exit strategy for psychiatric patients and a bridge to outpatient treatment, but lobbyist Patricia O’Sullivan said she was working with the advocates to work out the mechanics of the legislation to gain her organization’s support. She didn’t clarify the hospitals’ specific objections, and spokesman Philip Schmidt ignored a request for explanation from The Lund Report.
“Our folks in our acute care units have very difficult jobs,” O’Sullivan said. “We need the other side, the community, to meet us at the door and follow through with the outpatient planning.”
Chris Bouneff, executive director of the National Alliance on Mental Illness, Oregon chapter, told The Lund Report that while his organization did not draft these bills on its own, it was very supportive of the concepts and thanked Keny-Guyer for bringing them forward.
“The topics they address are the logical next step dating all the way back to 2005 when we finally achieved some equality,” said Bouneff, alluding to the state’s mental health parity law, which requires insurers to treat mental health conditions the same as purely physical ones.
He said HIPAA concerns in particular had been used as a weak excuse to providing family members with communication about a mental health patient’s treatment. “The problem is there is no communication regardless if it’s appropriate.”
Rep. Lew Frederick, D-Portland, has co-sponsored the bills with Keny-Guyer, and he shared his own painful story with the House Health Committee, revealing his wife’s struggle with mental illness.
Frederick said that since 1993, when she started hearing voices, that the ups and downs of her illness had cycled her through almost every hospital in the Portland metropolitan area, and each one was very different. Some had been helpful, others, not so much.
“I couldn’t tell you what medications she was on. I wasn’t given that knowledge,” Frederick said. “This is not an academic exercise for me. ... It’s personal, but also universal.”
Frederick complained that if she had broken her leg, the emergency room doctors would have told him how he could help, but he often gets no insight into her condition when she’s released after a mental breakdown.
Rep. Bill Kennemer, R-Oregon City, said the problem predated federal privacy laws, and he remembered a failing system as far back as the 1980s, when he was still a practicing psychologist. “That’s continued all these years. … It’s sad that it’s taken us so long to get there.”
Rep. Frederick is the champion of student privacy. The intersection of the Family Education and Privacy Act (FERPA) with HIPAA is paramount as the delivery of health care through telemedicine weakens confidentiality since the privacy rule does not apply. See: https://www.thelundreport.org/content/opinion-privacy-risks-climb-era-big-data