Do not ask me to deny her a ventilator

My pre-teen was hunched over his cell phone, elbows touching knees, thumbs dancing across the screen of his iPhone. I stood in the aisle in the Coolidge Corner Theatre, scanning the crowds for a glimpse of my aunt and uncle. I had invited them to see Stanley Kubrick’s ‘2001: A Space Odyssey’.

Scoring an opening in their schedule was a feat. Most evenings they were at the Boston Symphony, Museum of Fine Arts, lectures, dinners with friends, or walks. They traveled: Israel, Europe, New Mexico, New York, Provincetown. I was penciled in, a month in advance. Where were they? I checked my watch again and sat next to my son.

Two pairs of blue Lands’ End-jackets and jeans appeared at my side, and hugs were exchanged. We moved over to make room and everyone settled into their seats. My aunt dropped a Trader Joe’s shopping bag, pulled out a fistful of protein bars, and cheerfully announced that she brought low-calorie dinners for everyone.

A large manila envelope was thrust into my palm.

“What’s this?”

“Our health care proxy.”

“Why are you giving it to me now?”

“We are coming from a meeting with our lawyer. We assigned you as our alternate if something happens to one of us.”

“Well thank you, that’s quite a privilege, but not sure that I’m the right person.”

“You don’t have a choice.”

Unease gripped my stomach. I wanted to leave the theatre. But they seemed strong and healthy. I tried to push the conversation from my mind.

8 years have passed. She reads an article in the NYTimes Science section- her Torah from Sinai. One does not challenge its pronouncements.

The article says that ventilators are not recommended for elderly patients because for a certain percentage, the outcome is poor. She is 82, although she looks and acts at least ten years younger.

8 AM, an email appears in my inbox: “Dear All, if I get coronavirus, I don’t want a ventilator.” She copies my oldest daughter and my brother.

The ground shifts. I am dizzy and I hold the edges of my table. I cannot envision a world that she does not inhabit. I know that I am unable to follow her request.

I breathe deeply, trying to remain calm and rational, and write back, asking why she sent this email now and why she reached this decision. I try to reason with her. The statistics quoted about outcomes do not apply to her. She is in excellent health. She ignores me.

I dial her number. She answers, says she is busy and hangs up the phone.

I send her an email, asking whether she asked her doctor if she -specifically- might benefit from a ventilator. The “yes” appears immediately. I am skeptical.

My daughter weighs in- who asked her? She says that the decision is final and that she would like to see it in writing. I consider her attitude cold and unsentimental.

I call again and my aunt answers. She is breathing hard. She says that she is running on the beach, it is 85 degrees, and sweat is pouring into her eyes. She asks if she can call back in two hours.

She does not call back. The next day, I call again. She answers and asks what I want. She is panting. She is riding her bicycle home from the supermarket. I can see it now: the fourteen pound dachshund rides in the front basket. Heavy bags of mangoes, pineapples, and potatoes hang on the handlebars. She walks or rides her bicycle to the supermarket almost every day, despite the CDC’s warning that individuals who are ‘elderly’ should avoid entering stores.

I finally reach her a week later. She says she does not feel like discussing this decision. I ask her to please reconsider. First, her excellent health might put her in a different category from the elderly people described in the article. Second, I ask if she is ready to give up? Does she not want every possible opportunity to live?

She seems to be listening. Within the first 5 minutes she has not interrupted or ended the call. I muster the legal reasoning skills that I have not used in twenty five years. Finding a loophole, I run with it.

I say that her health-care proxy assignment is not acceptable because she assigned too many proxies: her husband and 3 alternates. She is allowed only 1 proxy and one alternate. Therefore, she needs to reconsider this entire issue. Besides, assigning me, my daughter, and my brother guarantees family conflict because it is already clear from our email communication that we disagree about how to respond.

A few weeks later she calls to ask whether I would mind terribly if my brother replaced me as her health care proxy. He graduated from medical school many years ago and changed careers. In her eyes he will always be ‘the doctor’. She said that because he “knows medicine”, she would like him to be her “health care advocate”.

I tell her that she made a very wise decision.

About the Author
Rachael is a journalist who lived in Jerusalem between 1987 - 1996. She wrote the ‘Inclusion Matters’ column for the Jewish Advocate and has published articles for Honest Reporting , Friendship Circle and the Parent Professional Advocacy League. She writes for Jewish Boston. A former attorney, she has a master’s in child development. She was an early intervention specialist and special education advocate.
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