- BIOETHICS FORUM ESSAY
Sweet Grapes at the End of Life
Ms. Rita, whom I met as a volunteer at a local nursing home, was the most ardent lover of grapes I have ever known. She was confined to a wheelchair but she never confined herself to her room, choosing instead to wheel around the halls of her new home, a much duller environment than the exciting New Orleans neighborhood where she had once lived. All passersby could count on a quip or an insult from the “queen” when they encountered her. I was no exception. “You sound like a bunch of frogs,” she casually remarked of my singing one day.
Ms. Rita rarely had visitors. She had little family, and her rough disposition rendered her friendless in her new setting. The other residents cautioned me against developing a relationship with Ms. Rita. “She has no social grace,” one resident scoffed. But I wanted to give her a chance. Over time, I came to learn that Ms. Rita’s rigid exterior belied a true softness inside. Her softest spot of all, though, was reserved specifically for grapes. Namely, green grapes.
I remember the first time Ms. Rita asked me for grapes. It was only a few weeks after we met. “Sure! What’s your preference, green or purple?” I asked. She looked at me amused, almost in disbelief. The next day, I brought Ms. Rita the biggest bag of green grapes I could find. She graciously accepted the grapes with a full smile and then immediately began eating them the way most people eat popcorn: more than one at a time.
Before I left home that day, I was summoned by a nurse. “Ms. Rita cannot have grapes anymore, okay? They make her blood sugar too high. But that was nice of you to bring her some anyway,” she whispered, careful not to let Ms. Rita hear her.
During my next visit, I intentionally tried to avoid Ms. Rita. I knew she would ask for more grapes, and how was I to respond? I could not implicate the nurse, as undoubtedly that would make a brawl out of the place. But I also could not bring myself tell her no. For a few weeks thereafter, I kept up the avoidance.
Eventually, I broke down. My middle school logic said that it was kinder to decline Ms. Rita’s request than to ignore her. Ms. Rita continued to ask for grapes, one time even calling my home phone at the ungodly hour of 6 a.m. to ask if I could “pretty please” bring her some grapes the next time I visited.
I had not the foggiest idea what to do. I did not want to defy the nurse. However, I also felt very strongly that Ms. Rita had a right to the grapes she wanted so badly. Her requests seemed so innocent to me, and the likelihood that she would not live for many more years made her simple requests all the more poignant.
At last, I mustered the courage to initiate a conversation with the nurse. I told her how I felt, and she listened sympathetically. She yielded: I could give Ms. Rita grapes but only a few at a time. I was so relieved.
Three years later, when Ms. Rita’s appetite was weaker and her time left was much shorter, I continued to bring her a small bag of grapes each week. Three days before she died, she told me that she would wait in excited anticipation all week for the grapes I brought on my Friday visits.
The grape dilemma illuminates a theme with significant ethical considerations: the delicate balance between patient autonomy and the beneficence of the medical field. Of course, health care providers have professional obligations to impart medical advice to their patients. But some patients may have priorities that are incongruent with medical wisdom. They should be allowed to let their priorities guide their decisions. Theoretically, I think, this is an ethical framework that few would dispute. But in practice, things become murkier, especially towards the end of life.
After seven-and-one-half years as a volunteer at this nursing home, I have come to recognize that health care providers are more likely, in the spirit of genuine concern and compassion, to impose their priorities on elderly residents with few visitors than they are on residents with frequent company. Because there is less oversight by loved ones in the former case, the possibility for misguided altruism by caretakers becomes more likely. Residents with little support outside of the clinical context are more vulnerable and thus should be buffered with protections to counter the potential for violation of their autonomy and self-efficacy.
Prioritizing physical health while paying little mind to happiness, even if only ephemeral pleasure, is a disservice to elderly people in nursing homes and other institutional settings. When we take from residents their ability to feel simple pleasure through the senses, we take from them a crucial aspect of what it means to be, and to feel, alive. Many residents already feel powerless, and denying them their freedom to make small decisions only worsens their anxieties and ultimately their overall well-being.
Today, as I recount these experiences, it pains me to imagine a different outcome for the grape dilemma. Without my intervention, it is possible that Ms. Rita, in her later years, might not have had the opportunity to eat what she wanted most. I know the nurse had only good intentions. After all, she was acting on her medical instincts, reflecting the norms of a health care system that all too often puts diseases, not people, at its center.
I am glad I was there to advocate for Ms. Rita, but I worry about the many others with stories parallel to hers that have no one to stand up for their right to life’s simplest pleasures.
Hanan Rimawi, a visiting scholar at the Hastings Center, is entering her junior year at Tulane University, where she is studying neuroscience and public health with vocational aspirations in geriatrics and palliative care.Read More Like This