Photo: John Ficara. Black Farmers in America
Photo: John Ficara. Black Farmers in America

In chapter 5 of Being Mortal, Atul Gawande writes beautifully about the professionals most interested in helping people “in a state of dependence sustain the value of existence.” The people at the center of interest for Gawande are the elderly and some whose grim prognosis requires assistance through formal structures like a nursing home or other informal arrangements like those offered by family. Gawande makes an admirable critique of the interplay between medical professionals and those who leave end of life decisions to people who have “technical prowess” but who may lack “understanding of human needs.” He concludes that this practice of leaving life in the hands of those whose skill may outweigh their recognition of the many experiences, acts, or endeavors that make life meaningful has failed. Gawande writes:

If safety and protection were all we sought in life, perhaps we could conclude differently. But because we seek a life of worth and purpose, and yet are routinely denied the conditions that might make it possible, there is no other way to see what modern society has done.

Recognizing the limits of the current model has led to the emergence of facilities that acknowledge the dignity and integrity of all persons. While Gawande details some of the institutional changes occurring, I want to focus on the Boston retirement community that he offers as an illustration of some of these transformations.

NewBridge fuses multiple models for attending to the elderly: independent living, assisted living, and nursing home living. The nursing home, however, reflects insight from research on gerontology. Rather than narrowly focusing on vital statistics and medical services alone, this nursing home emphasizes the more familial aspects of “home.” Unlike many nursing homes where professionals attend mostly to their patients, NewBridge offers care and assistance to its residents. In doing so, you can find private living spaces as well as common dining rooms that allow for interaction with others and the fluidity across boundaries that living in a community often fosters.

Ruth Barrett resides at NewBridge and she offers an example of the limitations of the technical model that Gawande takes for granted. In doing so, he offers an example of his claim regarding the limits of technical mastery given the cultural distance that often separates doctors from their patients. For Gawande, Barrett gave him a “sense of just how disabled a person could be while managing to still live in her own place.” So, Gawande meets Barrett while in the company of Jacquie Carson, NewBridge’s director. According to Carson, Barrett hasn’t walked in four years. Barrett challenges Carson first by stating, “I walk,” when Carson doesn’t back down, Barrett responds, “I don’t walk a lot.” At this juncture, Gawande offers that Barrett’s memory has faded thus countering Barrett’s self-understanding, “My memory is very good,” Barrett asserts. What follows is even more interesting. Gawande writes:

Unfairly, I asked her how old she was [Carson told Gawande that Barrett was 85 before he met her]. “Fifty-five,” she said, which was off by only three decades. She remembered the past (at least the distant past) reasonably well, though. She never finished high school. She married, had a child, and divorced. She waitressed at a local diner for years to make ends meet. She eventually had three husbands in all. She mentioned one of them, and I asked her to tell me about him.

“He never killed himself working,” she said.

Gawande offers no explication of what Barrett says. He assumes that readers will accept his authority as a doctor whose seen the charts and so can evaluate the patient’s fitness. Instead of confirming his authority, Barrett sets in relief the unfortunate presumptions supporting an analysis of black life informing how even the most enlightened folk evaluate mental acuity. To that end, Gawande presumes his right to question and test Barrett without acknowledgement of the respect that many women demand with revelations concerning their age. Rather than being “off by only three decades,” Barrett suggests that she still has an investment in her presentation of self through a show of vanity; too, she may not have found Gawande someone she took seriously; as someone who she was then required to answer truthfully. Gawande may be ‘a’ doctor, but he is not Barrett’s doctor. He’s a doctor touring a facility where she resides. From Gawande’s description, he met Barrett but he doesn’t tell readers that Barrett signed-up to answer his questions. Gawande can’t even conceive of the possibility that Barrett thinks little of his evaluation of her; that she might even understand herself as thoughtful in a way that he’s not. When Barrett tells Gawande that her third husband was lazy, Gawande does not recognize this moment as one that highlights Barrett’s mental dexterity. If the author of a book that takes seriously a troubling hierarchy regarding mortality, the fact that he uses Barrett as a test case of his and Carson’s authority to describe her world and her experience is problematic.

For those of us with chronic illnesses, Gawande’s failure to translate the patient/resident’s self-evaluation into something meaningful, insightful, or even digestible is a common experience. This limitation also prevents many doctors from recognizing the generalities they try to pass off as science. If you’ve ever had an MRI or a CT Scan with contrast, you know what I mean. After drinking the potion they concoct to illuminate your insides, the technician will tell you to “drink lots of water” to flush the chemicals. Nurses and doctors are similarly as precise when it comes to flushing your system after whatever test or treatment they’ve given to confirm what you already told them. While miscommunication does not serve as one of Gawande’s premises against surrendering one’s life to those with technical skill, it very well could be. If those authorities who evaluate one’s fitness don’t understand the depth and value of what you’re telling them, why would you want them to have the ultimate say in how you live out your final days? I know people who insisted on dying at home despite what doctors advised and I totally get it.

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