Life Matters Media
Quality of life at the end of life

Life Lessons From the Other Side of Florida

My Aunt Rose, Chocolate Chip Cookies and a Conversation that Changed Our Relationship

BY CRAIG KLUGMAN, Ph.D.

Aunt Rose

When you are an ethics student writing your dissertation on end of life issues, you talk to a lot of people about what they hope for in their final days. In my immediate family, this was a fairly easy task. My father, an attorney, had been writing living wills for clients since the 1980s.

But it was harder to discuss with my great Aunt Rose, who was in her early 90s then. Every time I mentioned advance directives or a conversation about end of life choices, she assured me that, very simply, she was not planning to die. Given that she was healthy, lived independently, and looked about 40 years younger than her actual age, I almost believed her.

I may not have agreed with her opinions, but as a family, we knew exactly what Aunt Rose wanted—to be kept alive as long as possible.

That was until the day she called me, wanting to discuss this poor woman who lived on the other side of Florida, Terri Schiavo. In my aunt’s perspective, the circus that had been created around Schiavo was insane. She thought it was “awful what they are doing to this girl.” It was just awful to keep this woman functioning through a feeding tube when “to anyone with eyes, she’s already gone.” Aunt Rose summed up her feelings quite clearly, telling me that she “would never” want anything like that to happen to her.

My response was short: “But Aunt Rose, that’s exactly what you’ve asked us to do!”

This was a fact she had not realized. “I had no idea that it meant machines and tubes and all that,” she said. After a pause, she asked me about those documents I had sent a few years prior. I explained that the advance directive allows her to choose who should make decisions when she no longer can. The form was a place that she could write down what she would and would not like to happen if that time should come.

She asked me to send one again.

I found a copy of the Florida advance directive and mailed it, as email was not in her repertoire. We spoke again when she received them.

“I would like your father to make my decisions, but I would like your mother to help him with the medical stuff,” she told me. My mom is a nurse, and thus our family medical expert.

“What’s this part about resuscitation, is that something I want?” We discussed CPR statistics: at her age, the chances of its success were less than one percent. Most likely, she would end up on a breathing machine and a feeding tube, like that girl in Florida.

Her decision was a definite no.

She signed the document and gave it to my father, instructing him to make copies. One for me, one for him and one for her doctor.

A few weeks later, she called again. This time, she asked that I send several more advance directives. “I’m making all of my friends fill them out,” said the woman who once intended to live forever.

Four years later, I learned my father was in the hospital with my Aunt Rose. She had suffered a stroke. I faxed her advance directive immediately, a form that was very clear: my father was to make her decisions, and she did not want a feeding tube or resuscitation.

Aunt Rose was recovering within a few days, but she was having hallucinations about dead people coming to visit. Others included bugs that crawled on the ceilings.

A speech therapist wanted to insert a feeding tube, as he feared she would aspirate while eating. In fact, my parents once found a temporary feeding tube kit next to her bed. Though the tray was quickly removed, my father requested a family meeting. ASAP.

I could not fly to Florida, but participated in the conversation via phone. Aunt Rose’s medical team expressed concern that she might aspirate, develop pneumonia and die.

I reminded him that we were discussing a 96 year-old woman’s cause of death.

“I see two options,” I said. “Number one, you put in the tube. She is vain about her appearance, and she will pull it out. You’ll then have to restrain her, and that’s the worst case.”

The second option seemed more palatable, quite literally.

“We let her eat anything she wants—chocolate chip cookies are her favorite—and she is either fine, or she aspirates. Pneumonia used to be called the ‘old man’s best friend’ because it’s a fairly easy—you get sleepy. So doc, how would you want to die? We know how she does.”

Aunt Rose eventually recovered, though she had trouble talking and her mobility was limited. We moved her from independent living to a skilled nursing facility. For the next three years, her spark went out. She had watched her mother and sisters die in nursing facilities.

For our family, her advance directive was important to safeguard against care she did not want. Because she lacked capacity to consent after her stroke, she also could not refuse treatment.

Aunt Rose never wanted to discuss death and dying for two good reasons: she had seen too much of it, and she had no plans to leave. What changed her mind was seeing a prominent case play out on her television and a serious, open conversation. This discussion allowed the freedom to talk about her childhood, her loves, her family and what she valued. Beyond just knowing what procedures she hoped for, hearing about her values allowed us to make choices that aligned with her wishes.

These were not check boxes on a form. On this National Health Care Decisions Day, remember that it is impossible to predict every choice that will need to be made. We could make the decision that Aunt Rose wanted, because we knew who she was.

Two months after her 99th birthday, Aunt Rose had another stroke. This one was fatal, and it came in her sleep. We had no need for her advance directive. But having talked about what went in that document was an opportunity to learn more about my Aunt Rose. I cherished her, and I now cherish that memory.