— A death doula explains how to respect and accept different end-of-life choices
By Lee Woodruff
I was on the other side of the world when I got the text. “Did you know Karla is dying?” my friend wrote. “They called in hospice and she only has a few days to live.”
My enjoyment of a long-planned vacation with my husband suddenly came to a screeching halt in my brain. How could this be? I’d spoken to Karla * a few months ago and we’d celebrated the news that she was pronounced cancer-free. We’d gabbed away for almost an hour, catching up on kids, her future plans and the challenges with chemo, all with her signature optimism and honesty.
I was never someone Karla would have counted in her inner circle. We were in different places in life, my youngest kids still home at a time when she was enjoying dinners out and weekends away. I’d met her more than 20 years ago as part of a group of moms who sat on the sidelines at their kids’ games and drove one another’s children to playdates and sleepovers. Life had moved us to different cities, and a year or more would easily go by without seeing one another. Any time we spoke, we’d always pick right up where we’d left off. She was that kind of friend.
Listening to the relief in Karla’s voice on that last, long-ago phone call, I recalled that we’d talked about a getaway weekend with girlfriends at the beach and rebooting that group dinner we’d canceled when her doctor unexpectedly discovered a small, pesky tumor. The last of it, she’d said.
When communication stops
For the past two years, Karla had been throwing everything she had at the disease, using a combination of the finest cancer care, physicians and hospitals, with holistic medicines, organic foods and juicing. Nothing that contained any chemical or synthetics was allowed on or in her body. Karla, or so we thought, had won.
How had this rosy picture gone into a death spiral so quietly? It wasn’t so much the shock that the cancer was back. Live long enough and you understand that cancer is a sneaky thief. Anyone who has experienced a brush with cancer never fully lets their breath out. But still…. Days to live? How had someone who had brought us along so fully on the journey, who had grabbed life by the throat and been honest and transparent about her illness gone so quiet? How could we, her friends, not have known?
Next came the wash of guilt. Each person responds to illness or injury so differently. There is no one playbook or template. My style has always been to take the cues from others and to give everyone space to do what was comfortable. But now, knowing I wouldn’t make it back in time to see her, I regretted showing up at her door.
When my journalist husband was injured by a roadside bomb in Iraq 18 years ago, my instincts were to immediately pull the shades down from the outside world. The prognosis was so devastating, I wanted all my energy to tend to him and help our kids process what was happening. I drew my circle tight, initially letting in mostly family and a few trusted friends who helped with critical roles to move life forward. I understood shock and trauma, but it was hard not to personalize it, even though I knew that was ridiculous.
Loss is a part of life
At a certain stage of life, loss becomes a theme. And there is no question that when something strikes out of the blue, a sudden diagnosis, a death, accident, or a spouse who leaves, we cannot help but think of ourselves. How would we handle it? How will we handle it when it’s our time to die? I’d seen people around me die in many different ways, from flinging open the doors and having a party to closing the curtains and going quietly, as Karla had done.
My in-laws never wanted to talk about dying or even do much in the way of preparation. My mother talked about it frequently and matter-of-factly, especially toward the end. She had every detail prepared and outlined, but she lost so many opportunities to live in the moment. There is only so much we can control. What would I choose when it was my time? It was impossible to know.
End-of-life choices
Alex Rosen, 42, from Armonk, New York, is a death doula. Her job is to support, guide and provide companionship and comfort for those at the end of their life. Ideally, Rosen works with people from diagnosis through the transition to the end of their life, from their emotional state to the physical setting, whether it be in a home or hospital.
“How we choose to be and exist at the end of life is our choice and our personal journey,” she says.“When possible, it should look and feel how a person wants it to, within the confines of the medical system.”
Part of the work Rosen does as a doula is helping the person and their family accept death and make it feel as comfortable and safe as possible.
“In our society and culture, talking about death is so taboo. So many things are said privately and behind closed doors,” she says. “Part of being alive is understanding that all of us are going to die. The more we can talk about it, the more we can begin to accept it.”
One of the insights I gleaned from talking with Rosen was the potentially harmful language we use around “battling” disease as a society. While comments about “waging war” against cancer can rally a patient to summon energy and desire to combat a disease, if the disease “wins,” there can be a sense of letdown.
“There’s a societal mentality around losing,” Rosen says. “And people who thought they’d ‘beaten’ the cancer or had the potential to, can experience a feeling that they didn’t fight hard enough, weren’t strong enough, that their body failed them. That mentality can bring a feeling of shame and failure rather than a sense of calm and peace at the end of a physical life.”
Karla was a competitor; I could imagine her devastation as she received the grim news from her doctor after a scan that revealed the cancer was back. The story didn’t sound right. From completely cancer-free to riddled throughout her body? But then again, this wasn’t information I had any right to know. This was Karla’s story to tell and to handle any way she chose. She had already been through so much.
The aftermath
I’m still processing Karla’s loss and the way in which we all learned about her dying. I’m still shocked on some level. The news feels like a rug that got pulled out from under me and others who knew her. And of course, there is still so much guilt and remorse over what I would have done differently, had I known. But guilt is a useless emotion, especially when it comes to death.
Karla wouldn’t have liked all this hand-wringing from her friends, and that thought comforts me. I am also consoled by the knowledge that she chose this. I know that this was the way she wanted it to go down because there were many opportunities to do it differently.
You take the good with the bad, I can imagine Karla saying. And I’ve had a pretty wonderful life.
My hope for Karla is that she got to experience death on her terms. By all accounts, she did.
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