Helping hands: End-of-life doulas play vital role for people at the end of their lives and their families

“Dance ... is about intention, and not about the specific movements or actions themselves.” When I read these words in Anna Halprin and Rachel Kaplan’s book “Making Dances That Matter,” they remind me of my work as an end-of-life doula. People facing the end of their lives dance with life and death, dance with loved ones, dance with the medical community, and dance with support services like hospices. My role as an end-of-life doula is to help bring intention to these dances.

As the quote says, its “not about the specific movements or actions themselves,” the dance is about intention. When someone is given a terminal diagnosis, approaching the dance of death looks different for every person. An important part is stopping and considering the intentions.

I learned this firsthand in a deep way recently. Sometimes I don’t meet families I companion until after a diagnosis. Other times I know them well. Such was the case a few weeks ago when my mom’s best friend since 6th grade was told she wouldn’t live much longer. This friend was a steadfast presence throughout my life. She and my mom modeled the love and joy two friends can bring to one another. Our families visited regularly and even went on vacation together. Her family brought great warmth and laughter to my family.

When this friend was given her terminal diagnosis, her family graciously invited my family in on their journey even though we were all many states apart. We had phone calls and sent pictures, messages and memories. I had regular conversations with her daughter and was in awe of this daughter’s desire to bring intention to her mother’s final days. The two of us talked about things to address with her mom — what matters most; her legacy; RUGS — regrets, unfinished, business, guilt, and shame; and, her wishes for the vigil before her death. We talked about how a good life and good death are not devoid of suffering. We talked about the internal work her mom was doing to let go of her body. And finally we talked about how it’s loving to tell her mom that the family will be OK when she is gone.

My family’s lifelong friend had a peaceful death and her family has the comfort of knowing they provided her with the experience she wanted. Her passing occurred the afternoon of my birthday. I was honored that on the day I was birthed into this world, I was able to be a small part of the process of intentionally birthing this special person into the next one.

This is the dance of an end-of-life doula. I’m grateful to be one.

Jackie Naginey Hook, MA, is a spiritual director, celebrant and end-of-life doula. She coordinates the Helping Grieving Hearts Heal program through Koch Funeral Home in State College. For more information, please call 814-237-2712 or visit www.kochfuneralhome.com.