Take Time to Define Quality of Life

My son will, hopefully, be gifted with my legacy after I’ve died—an example of how to live a full, potent, mostly graceful fall into a love affair with life itself. The length is less important than the meaty, juicy marrow in the heart of it. Quality over quantity has been my motto for ages, and life itself is no better place to show off this value.

Quality vs. quantity of life is a burning subject these days. Quality is more than just the lack of suffering. It’s measured by the vitality, the creativity, and individual craftsmanship of one’s life. All the measures of our uniqueness go into that definition. It’s a completely different answer for each person.

Quality of life can be a poem or prose about access to art and beauty, money, and love. It’s a sonnet about peace and joy, compassion for others and self. But when describing it to others whose task it is to accompany, support, and protect that definition, poetry is hard to pin down into medical orders.

Here’s another way to look at the question of “What does quality of life mean to you?” Try reframing the question to “What is so important to you that you wouldn’t want to live without it?” Some possibilities:

  • Being able to self-toilet
  • Walk
  • See
  • Know who my son is
  • Know who my husband is
  • Able to feed myself
  • Read a book and understand what I read 10 minutes later
  • Drive
  • Live without fear

These are markers. Think of them as a landscape. Imagine you’re walking from an open field toward a tree line of lightly scattered trees that progressively get denser as you go further into the woods.

As you age or your disease progresses, you are headed into the woods of your dying. As you go, you pass a tree and then another. Each tree is a marker, or measure, of something you held as quality of life. Passing one tree isn’t usually a problem. Two, three, even four might not be a deal breaker. But as they go by, your quality of life diminishes.

The important thing is to know what the markers are, to recognize them and to acknowledge them as you go. It’s immeasurably valuable to have open conversations with your family and support team about what these markers are. It’s impossible to advocate or support something that has not been described to you, and folks become anxious trying to support the quality of life for someone who hasn’t defined or discussed what that means to them. Knowing when you have reached the deeper woods is important for you and them.

And the dream of my legacy? My legacy will be one of how to live a rich, fully lived life that ended with clarity and awareness both for me and the people around me. That’s money, baby.  Pure gold!

Ashley T. Benem is the founder of the non-profit A Sacred Passing: Death Midwifery Service and the creator of the Art of Death Conference. She is an advocate for palliative and end-of-life care issues, empowering and supporting families to reclaim their right to die in congruence with their lives. Contact Ashley at asacredpassing@gmail.com.

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