By Kwame Anthony Appiah, New York Times Ethicist columnist
New York Times (free access), July 28, 2023
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.
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