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Supporting Patients, Caregivers at End of Life

Supporting Patients, Caregivers at End of Life
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Published on March 25, 2020

When my mother was in her last week of life after nine months of treatment for stage IV non-Hodgkin lymphoma (NHL), a social worker said the kindest thing to me and my sister.

“Your mother labored to bring you into this world; you will labor to bring her out,” she said. It was my “aha moment.”

This was a crucial day for the family as we watched my mom’s last breaths. She had wanted to go home. In fact, “home” was her last word. And I wanted to take her home to enjoy her favorite view of the duck pond beside her house, but by that time she was too weak to be moved. I wanted to be a better advocate. I wanted her death experience to be of her choosing.

End-of-Life Doulas

Today’s modern society is somewhat removed from the death and dying process. Home viewings used to be more common, but then they moved to funeral homes or parlors. For some, this experience can feel impersonal.

This trend seems to be changing, however, with the meaningful work of end-of-life doulas. These trained professionals help patients make a plan for how they want to spend their final days and with whom. But first, the patient must understand that they are going to leave this world.

This is where end-of-life doulas can be of great help. 

Jane Euler, an end-of-life doula in Virginia, describes her role as “non-medical companions that support the dying and their families.” Together, with social workers and chaplains, end-of-life doulas can help patients long before they are in the last days of life. Jane’s personal passion is in helping patients create legacy projects—these might involve writing letters to family or planning their final moments. 

Jane also conducts dignity therapy. She invites patients to “talk about important things in their world and give them a sense of purpose and a tangible legacy process.” For one patient, Jane sat at the foot of her bed and talked about legacy. “I wrote letters for her, in her words, for family members, and put them in the family Bible,” she said. And when family members freeze up and aren’t sure what the next best thing is to do, Jane guides them through it. 

After witnessing her own mother’s passing, Jane began to wonder how she could help by making the experience more positive. She had her own “aha moment” and started doing some research.

“I’ve always gravitated toward the elderly and walking them down the path,” she said. Her work is all patient-led, and her purpose is to help patients and their families have a better, more personal experience with death and dying. She is there to provide the support they need, when they need it most. 

Death, like birth, is very personal and sacred, and the work of Jane and people like her, helps patients create an experience that helps them gently go into the death process more informed, and more peaceful. It’s important work that is shaping family experiences and memories.

Although my mother spent her final days in the hospital, my best friend, a nurse, brought her a blanket to make the bed cozier. I played Simon & Garfunkel songs. My sister applied ChapStick to her chapped lips, and we all took turns holding her hands and talking to her. She may not have been able to go home to her duck pond, but she was surrounded by family. And at the end of this life, isn’t that what we all want? 

 ~Lauren Evoy Davis

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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