The Death You Want

“Have you given any thought to how you want your end of life to go?” I gently asked my nearly-94-year-old grandma that question one afternoon as we talked about her younger brother who had died two years earlier.

“I don’t want a stranger to find me.”

“OK,” I said, wondering the odds of this since she lived independently in a senior apartment and we weren’t with her every day. “And?” I offered.

“No hospitals,” she said definitively.

“No hospitals,” I mirrored back. “Absolutely. We’ll do the very best we can.”

I had been trying for many months to begin the conversations that would lead us to some deeper understanding of what my grandma’s end of life wishes were. For the most part, she was in good health, taking only one medication; the same since she was 34. And thanks to my mom’s influence, my grandma had her paperwork in order, including a medical directive that expressed only the most basic of wishes, anticipated theoretically, more than 10 years prior. But no one in the family had talked with her about it lately and I imagined that her aging and natural decline may have altered her opinion of things.

It had, and it hadn’t. Although it was still a hypothetical discussion, she was closer to her death than she had ever been. That proximity made talking about dying more difficult, bringing up her fears of the unknown, of the possibility of making the wrong choices, and of what is on the Other Side. Fears that she wasn’t often willing or able to articulate which left our conversations short and yielding little additional information.

Gratefully, we discovered that conversations with my grandma were not the only way to prepare. As a family, we began having our own conversations to lay the groundwork for her inevitable transition – whenever it occurred – and for how best to support her and each other through the process.

So a few months later, when my grandma had a fall that led to the hospital, an unexpected pneumonia diagnosis, and a clear indication that she was beginning her dying process, we were understandably caught off guard though not altogether unprepared. In the abruptness of ending up exactly where my grandma didn’t want to be, we found the courage to explore with her the options and the space to ask her the question, the answer to which ultimately directed us forward to the next best step: “What does quality of life look like now?”

Now. In this moment. 

“A comfortable bed with people to take care of me,” she said.

No heroic measures. No push to prolong her life. Just the wish for peace and comfort with her loved ones and caring support by her side.

We all needed to come to terms with what was happening, especially her. And it seemed the provisions we had made gave us space for that as well. Preparing to the limited degree we had – and let’s be honest, on some level we always wish we could prepare better or differently or more – gave us a foundation stable enough to be able to flow with the uncertainty of our situation before the stress of finding ourselves in a hospital room that we never intended to end up in.

Though my grandma was still afraid of what was to come, the opportunity for her to express her deepest wish at that moment, was everything – it gave her a much needed sense of agency and gave us the necessary information to direct her care in accordance with her wishes and to make those decisions together. 

As with all of life we can never know what’s to come, how we’ll get through it, or how we’ll feel on the other side of it. The truth is, regardless of how much planning we do, none of us has control over the dying process or how our desires may change once we’re in it. It is dynamic and fluid and unknowable. Yet, in the midst of that uncertainty, it is the preparation we are able to do that creates the space for us to be present and deal with whatever trajectory things take.

What we do know for sure is that none of us is getting out of this life alive. So, making the commitment to start preparing – regardless of our age or history or health status – will certainly get us closer to a death we want, than without it.

as originally published for End in Mind on February 12, 2019