We’d like to share a story with you about a friend of EOLCCA who attended our Bereavement Group after her husband died using medical aid in dying (MAiD). She joined us recently to tell her story at a Palliative Care Physicians conference where we were on a panel, and it was so moving we decided to share it with you. Please meet Trudy, a lovely person from southern California. (Her last name is withheld to protect confidentiality.)
Trudy has a Western Swallowtail butterfly tattooed near her heart, a constant reassurance of the presence of her beloved husband, Gary. As he lay dying on their flower-filled patio, Trudy remembers “the wind chimes chimed, and I saw a Western Swallowtail butterfly – the way he always comes to me now . . .”
Gary’s final years had not been so filled with grace. First diagnosed with stage 4 lymphoma in 2019, he underwent months of chemotherapy and, later, a bone marrow transplant in another city. By late 2022, Gary was back home, but weakened. He and Trudy were briefly optimistic when a scan showed no cancer, but it turned out to be only a short reprieve.
Palliative Care vs Hospice
In January of 2023, Gary accepted palliative care – “which we had soundly rejected earlier,” Trudy explains, “because it felt like we were giving up on curing Gary of cancer.” Hospice care was not an option at this point because Gary could not go on without regular transfusions and trips to the hospital to drain fluids. Pain medications were inadequate, and Gary’s palliative care team seemed unable, or unwilling, to make necessary changes. It was at this point that hospice was called in.
Medical aid in dying
Late in this journey, the pair learned of the California End of Life Option Act, which empowers dying individuals to take control of their final days and weeks. It’s what they learned along their journey that Trudy hopes might help others avoid some of the pitfalls that consumed precious time and energy.
“I was a resource teacher,” Trudy says; “and know how to use technology.” But even with those skills, when Gary was diagnosed with a probable life-ending cancer, they were denied complete and detailed information about their options. “There ought to be a policy,” she says now, “that people dealing with terminal patients at least have a simple requirement to hand them a brochure.” In fact, physicians uncomfortable discussing terminal diagnoses (as theirs was) or unsupportive/uneducated about the California End of Life Option Act, is sadly often an early roadblock to empowering patients with the information they need.
“If only we had known . . .”
Understanding what services are available, often mandated, is critical to those dealing with terminal diagnoses, Trudy emphasizes. In their case, determined to pursue every available possibility for a cure or remission, she cites best and worst case scenarios and many in-betweens. Their social worker was excellent (“Everyone should have a knowledgeable social worker!”) and provided both help and comfort. But a thorough understanding of two critical pieces of end-of-life care, early on, would have made a difference. For example, “we strongly rejected palliative care,” Trudy says, “because it felt like we’d be giving up. It was very unclear to us. Everyone should know the difference between palliative care and hospice and the important benefits of both.”
Trudy also urges better information and understanding about pain management. Gary’s pain medications proved inadequate as he neared the end of his life and the two of them argued for changes to alleviate his suffering.
Palliative care is focused on symptom relief, including pain relief, with a goal of improving the quality of life for both patient and family, while receiving treatment. It does not require a diagnosis of terminal illness or that all treatment be forgone.
Trudy and Gary’s journey was the two of them throughout. A couple of introverts “who would never have gotten together if online dating hadn’t existed,” they met online in 2006 and married in December of 2014. Throughout their marriage, they enjoyed hiking and being in nature, even naming their company for a California sunflower. After Gary chose to use MAiD, when the time came she and friends filled the patio to overflowing with flowers and surrounded him with “a bubble of beauty and love.”
As part of his legacy, Trudy is helping spread awareness about end-of-life care and medical aid in dying, which provided Gary with the the calm and peaceful death he wished for.
A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA in Art from Randolph-Macon Woman’s College, and currently blogs at Medium.com and franjohns.net. Her short story collection, Marshallville Stories, was released in April 2022.
EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help families – like Trudy and Gary – with information and support to navigate their end-of-life planning and choices. That includes obtaining aid in dying through the California End of Life Option Act, helping them obtain needed services or adequate pain control, and finding physicians and hospices willing to prescribe. We wish we had met Trudy and Gary sooner to provide that help when they really needed it. EOLCCA is a 501(c)(3) nonprofit organization and we rely on donations from individuals and foundations to support our work. To make a contribution or request an educational presentation, please visit ways to help. Thank you!