Imagine this: Your elderly mother, who has dementia, is in a nursing home, and COVID-19 vaccines are due to arrive in a week or two.
You think she should be vaccinated, having heard the vaccine is effective in generating an immune response in older adults. Your brother disagrees. He worries that development of the vaccine was rushed and doesn’t want your mother to be among the first people to get it.
These kinds of conflicts are likely to arise as COVID vaccines are rolled out to long-term care facilities across the country. The process starts Monday in Pennsylvania and New Jersey.
“This is a highly politicized environment, not only with respect to vaccines but also over the existence of the virus itself,” said Michael Dark, a staff attorney with California Advocates for Nursing Home Reform. “It’s not hard to imagine disputes arising within families.”
About 3 million people — most of them elderly — live in nursing homes, assisted-living centers, and group homes, where more than 105,000 residents have died of COVID-19. They should be among the first Americans to receive vaccines, along with health-care workers, according to recommendations from the Centers for Disease Control and Prevention and various state plans.
But long-term care residents’ participation in the fastest and most extensive vaccination effort in U.S. history is clouded by a significant complication: More than half have cognitive impairment or dementia.
This raises a number of questions. Will all older adults in long-term care understand the details of the vaccines and be able to consent to getting them? If individual consent isn’t possible, how will families and surrogate decision-makers get the information they need on a timely basis?
And what if surrogates don’t agree with the decision an elderly person has made and try to intervene?
“Imagine that the patient, who has some degree of cognitive impairment, says ‘yes’ to the vaccine but the surrogate says ‘no’ and tells the nursing home, ‘How dare you try to do this?’ ” said Alta Charo, a professor of law and bioethics at the University of Wisconsin-Madison Law School.
Addressing these issues will occur against a backdrop of urgency. Deaths in long-term care facilities are rising dramatically, with new estimates suggesting that 19 residents die of COVID-19 every hour. With viral outbreaks increasing, already-overwhelmed staffers may not have much time to sit down with residents to answer questions or have conversations with families over the phone.
Meanwhile, CVS and Walgreens, the companies operating vaccine programs at most long-term care facilities, have aggressive timetables. Both companies have said the rollout of the Pfizer-BioNTech vaccine — the first one that the Food and Drug Administration has authorized — was to begin in some states on Dec. 21. Altogether, there are more than 15,000 nursing homes and nearly 29,000 assisted living residences in the United States.
At a meeting of the federal Advisory Committee on Immunization Practices early this month, Nancy Messonnier, director of the CDC’s National Center for Immunization and Respiratory Diseases, acknowledged the agency was “very concerned” that information about vaccines be adequately explained to long-term care residents. “It’s very important for the frail elderly not only to ensure that they are understanding the vaccine that they’re getting, but also that their family members do,” she said.
Each vaccine manufacturer will be required to prepare a fact sheet describing what’s known about benefits and risks associated with a vaccine, what’s not known, and making it clear that a vaccine has received “emergency use authorization” from the FDA — a conditional endorsement that falls short of full approval. A second vaccine, from Moderna, received this kind of authorization after an FDA meeting earlier this month..
Something that will need to be made clear to residents: While vaccines have been tested on people age 65 and older, those tests did not include individuals living in long-term care, according to Dr. Sara Oliver, a CDC expert.
Some operators have crafted communication plans around the vaccines and already begun intensive outreach. Others may not be well prepared.
Juniper Communities operates 22 senior housing communities (a stand-alone nursing home, multiple memory care and assisted-living facilities, and two continuing-care retirement communities) in Colorado, New Jersey, and Pennsylvania. Juniper had plans for an hour-long town hall videoconferencing session for residents and families about coronavirus vaccines after it held a similar event for staffers.
Juniper has contracted with CVS, which is requiring that every resident and staff member fill out consent forms in triplicate before being inoculated. When written consent can’t be obtained directly, verbal consent, confirmed independently, may substitute. Walgreens has similar requirements.
For residents with memory impairment, two Juniper nurses will reach out by phone to whomever has decision-making authority. “One will ask questions and obtain verbal consent; the other will serve as a witness,” said Lynne Katzmann, Juniper’s founder and chief executive officer. Separately, emails, blog posts, and prerecorded voice messages about the vaccines have gone out to Juniper residents and staffers, starting at the end of November.