Five years ago, I began volunteering as a bill payer for a legally blind, 95-year-old woman receiving public assistance. By managing her paperwork and bills, I was able to help her continue living at home. What I didn’t realize initially was that this woman had no remaining family or friends, making me her only companion. As I spent time with her, I discovered that one of her caregivers had been fraudulently using her credit card, leading her to be placed under the care of Adult Protective Services (A.P.S.).
Last August, she experienced a fall out of bed during the night and was found by her caregiver the next morning. They immediately called 911, and she was transported to the hospital for treatment before being transferred to a rehabilitation center in a nursing home. After 100 days, according to her insurance, she was categorized as a long-term patient.
At present, she is 100 years old, blind, and confined to her bed for 24 hours a day, except for when I visit and take her outside in a wheelchair to the patio. This nursing home environment is unfamiliar to her, and she is constantly exposed to the screaming, crying, and cursing of other patients throughout the night. Despite her circumstances, she remains relatively lucid, and her only motivation to keep going is the hope of returning to her small studio apartment where she had lived for the past 50 years. She has expressed her willingness to die if she cannot go back home.
However, due to her guardianship arrangement under the nursing home’s care, which resulted from her involvement with A.P.S., I am no longer legally allowed to pay her bills or handle any necessary paperwork. Consequently, her rent has been left unpaid, and eviction proceedings are underway. Although I have attempted to become a designated contact for her to advocate for better services, I am caught in a frustrating Catch-22 situation due to her deemed incompetency by the nursing home. Only her designated contact has authority to request a re-evaluation, leaving me powerless.
My dilemma is whether to inform her of the truth that she will never return home. Will stripping away this hope cause her to lose her will to live? And is it ethical for her will to live to be based on false premises? The nursing home’s social worker refuses to speak with me since I am not a legal contact, therefore, the decision to reveal the truth lies with me, as she has no one else.
From the Ethicist’s perspective, this heartbreaking story reflects a growing issue faced by older adults without familial support. Various factors contribute to this problem, sometimes stemming from a well-intentioned emphasis on safety in elder care that overrides individual freedom. Additionally, processes such as guardianship, while also intended to protect individuals, can inadvertently strip them of their autonomy.
Moreover, nursing homes may not be immune to financial incentives, as they may prioritize Medicare-covered rehabilitation in order to fill beds for Medicaid-funded long-term care at a reduced rate. Labeling patients as incapacitated and assigning guardianship to third parties can simplify bill collection. What sets this situation apart is the fact that you are present to witness it firsthand.
There may be a institutional temptation to keep her unaware of the truth in order to manage her more easily. However, it is ultimately her life, and she has the right to be informed about what is happening and to respond accordingly. Before making any decisions, ensure that she has exhausted all available options.
Consider reaching out to a long-term care ombudsman, as mandated by federal law, who can act as an advocate for residents. Additionally, your state likely has elder-abuse centers and advocacy groups you can consult for guidance. This woman simply desires to spend her remaining days in her own home, a perfectly reasonable wish.
Unfortunately, her options, as well as yours, are limited. What is truly needed is systemic reform to address these shortcomings. As Laura Mosqueda, an expert in elder care and elder abuse, notes, our current solutions may prioritize radical measures like guardianship without providing more humane and dignified alternatives. When our bodies and minds deteriorate, conflicts arise between protecting us and respecting our autonomy, resulting in institutional arrangements that can further inflict misery.
Reader’s Response:
The previous column addressed a reader’s dilemma regarding her friend mistreating her nanny. Responses to the Ethicist’s advice were mixed. Some felt that the reader should not turn a blind eye to the abuse of power, while others emphasized the importance of ensuring the nanny’s approval before taking any action.
Richard expressed the belief that the reader should be willing to have a smaller circle of friends who treat people with dignity, rather than compromising her values for the sake of a larger group.
Courtney appreciated the Ethicist’s acknowledgment of the wider issues surrounding the mistreatment of domestic workers, highlighting the vulnerability of this group due to various forms of discrimination and the isolating nature of their job.
Tom echoed the importance of not jeopardizing the current nanny’s job and waiting for the next transition before addressing the issue.
Deborah suggested a different approach, advising the reader to discuss her deep appreciation for her own nanny and express her concern about the exploitation of nannies in general. This would serve to provide a moral compass without directly involving the friend’s nanny and risking her career.
John saw this as an opportunity to raise awareness among the entire friend group about the importance of treating those with less power with respect. By sharing other examples of exploitation and avoiding singling out the abusive friend and her nanny, the goal is to make her recognize the inappropriateness of her own behavior through the collective judgment of their mutual friends.
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