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Tuesday, April 24, 2018

Bethany Brown Discusses Human Rights Violations in U.S. Nursing Homes

On April 23, Bethany Brown, a Researcher in Human Rights Watch’s Health and Human Rights Division, presented the organization’s recent report, They Want Docile: How Nursing Homes in the United States Overmedicate People with Dementia. The event was co-sponsored by the Global Health Justice Partnership, the Solomon Center for Health Law and Policy, and the U.S. Health Justice Collaborative; it drew audience members from the medical, nursing, and public health schools, as well as the Law School.

The report investigates the widespread use of anti-psychotic drugs to sedate dementia patients in nursing homes around the U.S. Brown said that Human Rights Watch (HRW) focused on this issue because it “flies under the radar,” even though in some facilities, as many as 80 percent of patients were given these drugs, often without giving informed consent. Brown argued that anti-psychotic medications “facilitate neglect”: they leave patients lethargic, apathetic, and unresponsive to their loved ones. “Having dementia is hard enough,” said Brown, “but these drugs take away people’s ability to communicate and to love, and to be loved in whatever ways they have left.”

Brown explained that to address the methodological challenges of their investigation – for instance, it was difficult to talk to sedated patients – their researchers approached patients’ family members, many of whom were unaware that their loved ones were on anti-psychotic drugs. HRW talked to one woman who at first thought her mother’s drowsiness was a result of the aging process, but then discovered that the facility had put her mother on anti-psychotic medications to keep her from yelling. The daughter later learned that these yells were her mother’s responses to having a urinary tract infection and a pulmonary embolism. “If I had those things, I would scream too,” the daughter told HRW. Another woman first learned about the dangers of anti-psychotic drugs from HRW researchers, and then decided to move her mother to a different facility. The daughter told HRW that in the new environment, she made sure her mother was not given these drugs. “I got my mom back,” she said, “as much as I can have my mom back.” 

As HRW found when it investigated the rules for using anti-psychotic medications, a nursing home is meant to use non-pharmacological interventions if a patient is in pain before it can administer these drugs, and even then, the patient has to give informed consent. In the report, HRW recommended that the federal government enforce its preexisting regulations on chemical restraints and create new regulations that make informed consent more explicit. Brown added that the report revealed much bigger reforms needed in nursing homes, such as mandating patient to staff ratios and providing better training for staff members on how to care for the fifty-five percent of nursing home patients who have dementia.

As Brown explained, HRW was the first major human rights organization to focus on the rights of older people, whose rights are protected in the Declaration on the Rights of Disabled Persons. “We do this work,” she said, “because when someone is completely dependent on the system around them, there’s a heightened risk that their rights will be violated.”

Brown has been committed to fighting for the rights of older people since she graduated college and volunteered with a hospice program in New York City. Brown spent many days with a woman who, one day, had tried to withdraw money from her bank, only to find that her daughter had removed all her money. “She was so ashamed and scared,” Brown recalled, “And that stuck with me.” She learned more about ageism and went to law school so that she could advocate for the rights of older people. “We don’t see a place for them in society, and that makes it easier to warehouse them away,” she said. “There’s no other group in society for whom we would think that sort of treatment is acceptable.”