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AARP Public Policy Institute
Change Agent for Nursing Home Practices
Patricia McGinnis first learned of the issue that would become her life’s work well before she began her career, when she was only a college freshman.
The learning experience came when McGinnis, who grew up in a small western Pennsylvania coal-mining town, took a job in a state hospital. It was there that she witnessed firsthand the perils of institutionalized care. She witnessed how many of the patients with Alzheimer’s (when it didn’t even have a name yet) and other dementia-causing conditions were given Thorazine, an anti-psychotic drug highly overused at the time.
Later, after moving to California, McGinnis worked in various residential care facilities. Disturbed by how freely these facilities would provide residents with psychotropic drugs, she reflected that there was no way the practice could be legal. And the occasions in which she witnessed the practice were not isolated incidents, she realized; widespread use of inappropriate drugging was pervasive, and she could see the detrimental physical and mental side effects on patients. Even more alarming to her was the lack of informed consent from patients and residents.
With such experiences under her belt, McGinnis was on her way to advocating for change. She finished law school in San Francisco, where in 1983 she started Bay Area Advocates for Nursing Home Reform (BANHR) to protect the rights of long-term care consumers. In 1990 BANHR expanded statewide, becoming California Advocates for Nursing Home Reform (CANHR) and signaling McGinnis’s move to take the long-term care reform fight to the state legislature.
Next came the CANHR-launched Campaign to Eliminate the Inappropriate Use of Psychotropic Drugs and Improve Dementia Care in Nursing Homes, which is dedicated to eliminating the “culture of drugging” by replacing it with a more person-centered approach. Since the inception of the Campaign in 2010, CANHR has co-hosted over 13 symposiums, where palliative care experts spoke on evidence-based alternatives to help practitioners manage commonly associated behaviors of those with Alzheimer’s (i.e. aggression, wandering, and etc.). The Campaign has been widely acclaimed as a success, having documented a reduced use of “chemical restraints” by nearly 20 percent for nursing home residents with dementia.
The work of McGinnis’s organization is now reaching the national level as well; in its constant push to effect change, CANHR has joined forces with a number of likeminded state and national organizations, including Consumer Voice and the Center for Medicare Advocacy. Tony Chicotel, CANHR staff attorney, and Michael Connors, a CANHR long-term care advocate, spearheaded a work group with the Center for Medicare and Medicaid Services (CMS) that yielded numerous recommendations to improve federal oversight. The workgroup also prompted CMS to initiate a national campaign against the inappropriate use of psychotropic drugs.
McGinnis knows reform on this issue still has a long way to go. According to CANHR’s website, as many as 20,018 residents in California’s nursing homes are still being given antipsychotic drugs. Thus, CANHR will continue convening symposiums and redouble outreach efforts to educate consumers and legislators. McGinnis wants people to know that there are alternative methods to treat those with Alzheimer’s and dementia, and most of these options include adopting a more person-centered approach in care.
As progress continues at a slow but steady pace, McGinnis and CANHR continue to look at other areas to tackle and services it can provide to assist older individuals and their families. Meantime, much work remains in the advocacy arena.
“Everyone needs to be an advocate,” says McGinnis. “Staying quiet is not an option.”
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