Talking about being mortal

Last winter I attended a screening of Being Mortal with a panel discussion at American University. It was a strangely beautiful evening.

As a culture we’re not great at talking about death. We fear it, but rarely refer to it. Nothing will change our inexorable progress toward death; as AU Chaplain Mark Schaefer commented during the panel discussion, the ratio of those succumbing is ever the same, 1:1. Yet we, our families and our doctors very often lack the skills and traditions to communicate well, lovingly, effectively and supportively about this mysterious endpoint on our horizons, exacerbating the fear, avoiding our need to plan effectively — in the end often causing more, rather than less, acute pain. Yet on this evening there were people honestly, genuinely attempting to do their best to share helpful thoughts on the topic. It was… great!

Atul Gawande, surgeon and author of the superb book Being Mortal, made a Frontline documentary based on the book delving into the experiences of both medical professionals and terminal cancer patients. Sadly, for most the experience was far from ideal. Physicians felt they had failed, having nothing more to offer in their medical arsenals. Patients and families, having no sense of when death was actually approaching (though their physicians did) were shocked at the abrupt end, and said they regretted not taking more time to just be with one another rather than rushing after the next (painful, hopeless) treatment. So sad!

On the other hand, one lovely man repeatedly made crystal clear to family and doctors that he wanted to die on his farm, period. No treatments, once it was clear treatments weren’t helping. His family moved his bed into the living room, where he was able to be at the center of life, speaking openly with a grandson about his approaching death, reassuring the boy that he felt fine about it, that he’d lived a good life, and encouraging his grandson not to worry about him. Letting go with love, and giving the child permission to let go, too.

My father died when I was in my early 20’s. My older sister was in Japan, and my mother and I attempted to cope. I didn’t know what to do, of course, as my father’s brain filled with a tumor metastasized from his lungs. There was no manual. The doctors were singularly unhelpful. The radiologist gave my father a chipper “orientation” about scheduled treatment, assuring him that they had a 75% success rate (a lie).

I read Elizabeth Kubler-Ross’s then groundbreaking book On Death and Dying, which discussed her theory of the five stages of grief. I found and read Simone de Beauvoir’s masterpiece, A Very Easy Death, a moving, day-by-day recounting of her mother’s death, showing “…the power of compassion when it is allied with acute intelligence” (The Sunday Telegraph).  I was looking for what to expect (no one tells you, or at least, no one told me). These books helped, somewhat. Somewhat was better than nothing.

I started caring for my father with the Episcopalian reticence of my upbringing, but soon gained confidence and just winged it, doing what I felt was right, making things up as I went along. I believe I was offering what Chaplain Mark Schaefer referred to in the panel discussion as the most important aspect of care: authenticity. And of course, love. I talked to my father, asked how he was feeling, and let him know I was available to listen, indeed, that I wanted to listen.

It was awkward! But we made progress. One day he told me about the death of his oldest sister, Em, who died when she was 14, at home on their farm in 1921. My dad, 11, wasn’t allowed in the room, but remained close by. He said the moment she died, he felt her spirit pausing briefly in the room where he waited. In a busy family of 5 children, she had been his mini-mom, making sure he was cared for, laughing at his jokes, baking the cookies she knew he loved, checking up on him. He felt her spirit blessing him in passing.

My father died at home. I hired a wonderful 7th Day Adventist male nurse, and between the two of us, we cared for my dad as he slipped into a non-responsive, near-consciousness. I read aloud to him passages of things I knew he’d loved, especially the psalms. Towards the end I had the intuitive sense that he was hanging on out of a sense of duty, so one night I sat with him and told him it was ok to go, that mom and I would be all right. He died 2 days later.

I felt his spirit pass out into our backyard, the beloved space he had planted and tended. I caught my mother’s hand and pulled her outside to feel his presence. I remember the snow, and red cardinals perched on dark green, snow-dusted hemlock branches. It felt sacred, and deeply comforting.

Looking back, I learned a great deal about life from death.  I think that it took some bravery for a young, relatively inexperienced woman to take charge of caring for a dying person. But it has given me courage all my life, to be present with what is, to be there for those I love, to stand up for love.

A book I found comforting as I grieved my father’s death was Madeleine L’Engle’s memoir A Circle of Quiet. I’m sure there are so many good ones out there now. Do you have favorites?

I also want to thank the other two panelists during the evening at American University, my friend Niel Rosen of Living Well Advance Care Planning, whose expertise in holding end-of-life conversations is a wonderful resource for families, physicians and organizations, and Carol Kaplun, Nurse Care Manager of Iona Senior Services, who shared a beautiful story of a “good” death among the many she has witnessed, adding a note of grace to the evening and our understanding of this complex, fearful, magnificent, human topic.