Hospice care makes difference for family affected by lifelong illness

Ashley Evenson lived with a lifelong illness known as Cockayne syndrome that prematurely aged her. She lived with her disease for 32 years before passing away in 2019.

Ashley received palliative and hospice care over the course of her life, and Ashley's mom, Lynn Evenson, wants people to know about the benefits of hospice care.

"To keep Ashley's memory alive, I want to tell her story," says Lynn. "And I want to make it open to people to understand and learn what hospice is really about and how it can make a big difference — not just for the patient, but for the caregiver, as well."

People often are confused about the difference between palliative care and hospice care. Palliative care is for anyone who has been diagnosed with a chronic illness. When a cure is not possible, a shift to hospice care can offer supportive measures for the patient and the family.

And an early referral to hospice can help everyone involved.

"Hospice can provide so much care and comfort in all aspects of the end-of-life experience for both the patient and the family," says Jennifer Larson LaRue, a Mayo Clinic Health System psychotherapist. "So it helps that very difficult, painful time go more smoothly, I think."

National Hospice and Palliative Care Month, which is recognized in November, highlights the important work these programs do to help patients and their families when a cure is not possible.

On this Mayo Clinic Q&A podcast, Jennifer joins Ashley, who shares her family's journey through illness and their wish to help educate others about the advantages of hospice care: