Five years ago, I began volunteering as a bill payer for a legally blind, 95-year-old woman on public assistance. The job involved handling paperwork that clients could no longer handle themselves, thus helping enable them to remain at home. I came to learn that this woman had no family or friends left, and she came to think of me as her only friend. During my time with her, she was also put under the care of Adult Protective Services (A.P.S.), because one of her caregivers was fraudulently using her credit card.
Last August, she fell out of bed in the middle of the night. A caregiver found her the next morning and called 911. She was taken to the hospital, treated and then sent to a rehabilitation center in a nursing home. After 100 days, as per her insurance, she was now considered a long-term patient.
She is now 100 years old, blind and lying in bed 24 hours a day, except when I visit her and take her to the patio in a wheelchair. She is in an unfamiliar place and hears screaming, crying and cursing all night from other patients. She is relatively lucid despite her circumstances, and the only thing that is keeping her alive is the hope that she can go back to her small studio apartment soon, a place where she has lived for 50 years. She has said she wants to die if she can’t go home.
Because she was protected by A.P.S. and is now in a guardianship arrangement under the care of the nursing home, I can no longer legally pay her bills or take care of any paperwork. This has meant that her rent has not been paid, and eviction proceedings are in the works. I have tried to get myself listed as a contact for her, to at least be able to advocate for better services but have come up against a wildly frustrating Catch-22 situation. She has been deemed incompetent by the nursing home and therefore can’t name me as a contact. I requested to have her evaluated again, because I don’t believe she is incompetent, and the answer was that only her contact can make that request.
My question to you is, Do I tell her the truth, that she is never going home? Will taking away that hope make her give up her will to live? And should her will to live be based on a false premise? The social worker at the nursing home won’t even talk to me, because I am not a legal contact, and so the decision to tell her the truth lies with me; she has no one else. — Name Withheld
From the Ethicist:
This story is heartbreaking and, I fear, all too common, as “kinless” older adults grow in number. All sorts of factors play a role, some benevolent. These include an attitude toward elder care that puts safety ahead of freedom, and the well-intended use of provisions, like the guardianship process, that deny people their autonomy.
Nursing homes aren’t always unaffected by financial incentives, either: the hundred days of rehabilitation that Medicare can mostly cover followed by the Medicaid-funded long-term care that, at a lower rate, still keeps a bed filled. Petitioning to have patients deemed incapacitated, with guardianship assigned to a third party, can make bill collection easier, too. What’s unusual here, I suspect, is mainly that you’re around to bear witness to it.
There might be an institutional temptation to keep her in the dark so that she will be easier to manage. But it’s her life. She has a right to know as much of what is happening to her as she can understand and a right to respond accordingly. First, though, be sure that she has exhausted her options.
You can try to convey your concerns to a long-term-care ombudsman, who, by federal law, serves as an advocate for residents. Your state probably also has an elder-abuse center and elder-advocacy groups that you could consult. This woman simply wants to live out her days in her own home. That shouldn’t be too much to ask.
Yet her options, and yours, are sadly limited. There’s a need for systemic reform here. “We are too easily willing and able to justify radical measures such as guardianship and do not yet have more humane, dignified solutions in place,” Laura Mosqueda, an elder-care and elder-abuse expert at the Keck School of Medicine of the University of Southern California, tells me about cases like the one you describe. As our bodies and minds grow frail, conflicts arise between protecting us and respecting us; institutional arrangements meant to save us from misery can end up inflicting it.
The previous column’s question was from a reader whose nanny had informed her that a close friend was mistreating her own nanny by underpaying her, withholding food and reneging on promised benefits. Our reader wondered what her ethical obligations were in this situation. She wrote: “This friend introduced me to her circle of friends a few years ago, and it’s because of her that I am part of a great group of women. Should I intervene and risk her behaving even worse toward her nannies and creating a rift in the friend circle? Or do I say nothing and continue with business as usual?”
In his response, the Ethicist noted: “If you bring up what you’ve heard with your friend, she will know that her nanny has been complaining about her — and may retaliate. Because her nanny is vulnerable here, make sure that whatever you do has her approval. … If she doesn’t want you to speak up, you could wait until the next transition. If that’s not going to happen soon, you may feel you have to distance yourself from your friend without saying why. Abusive behavior makes someone unappealing company.” (Reread the full question and answer here.)
Do you want to look the other way, knowing this person is abusing her power over her employee? If your friend gets mad at you for speaking up, it says more about her. You should be able to live with a smaller circle of friends who treat all people with dignity, rather than a larger group who do not. — Richard
I appreciated how the Ethicist responded to the greater possible legal ramifications of the situation for nannies and other domestic workers, since they are a group often overlooked due to classism, racism, sexism and the isolating conditions of the job itself. His advice was spot on about going through the nanny before taking any action to avoid unwanted retaliation. — Courtney
The Ethicist’s advice to not jeopardize the current nanny’s job is so important. This job, despite the alleged abuse, may be a critically valuable source of income. Waiting to bring it up until the next “nanny transition” is good idea. At the very least, getting the current nanny’s approval is essential. — Tom
The letter writer could talk to her friend about how much she values and appreciates her own nanny and how protective she feels toward her. She could give examples of different ways that nannies get exploited and share her disgust that people behave in such awful, inequitable ways. This would serve the same purpose of providing a moral compass without risking the career of the friend’s nanny. — Deborah
This is an opportunity to help your entire circle of friends appreciate the importance of how we treat those who have less power than us. You can provide other examples and avoid having your abusive friend trace this back specifically to her and her nanny. The goal is for her to see her own behavior deemed inappropriate by you and all your mutual friends. — John