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‘I am totally at ease’: A patient shares her choice for hospice

Kathlyn, JourneyCare PatientFor Kathlyn, it was a matter of listening to her own instincts.

At age 74, she had been living with lymphoma and seeking curative treatments like immunotherapy at a prestigious research hospital in Chicago. But she was also living with challenging side effects that stemmed from those medications – and her white blood cells were climbing despite them.

“I have the best oncologist, but he only thinks in terms of treatment,” Kathlyn says. “That is a great way of thinking but it’s not my way of thinking, and I told him I wanted to go in a different direction.”

Kathlyn advocated for hospice and her doctor connected her with JourneyCare Associate Medical Director Dr. Eytan Szmuilowicz. Together, they determined that Kathlyn would benefit from JourneyCare’s Care Choices program, which allows patients to continue treatments like immunotherapy or radiation, while still receiving hospice-like services including the support of a care team.

Care Choices helped Kathlyn “have her cake and eat it, too,” she said, in terms of continuing lab work that would monitor the rise of her white blood cells. But when she needed more support, JourneyCare’s hospice program offered the help she wanted.

“I am totally at ease now and have complete faith in my care team,” Kathlyn says.

In addition to her JourneyCare Registered Nurse Gina Romanelli, Kathlyn’s team includes a social worker, chaplain and volunteers.

The team manages Kathlyn’s symptoms like shortness of breath and pain, while also helping with personal goals. After living with hearing loss since childhood, Kathlyn became founder and president of Empowerment through Hearing, an organization that raises awareness about hearing loss, its causes, and prevention. Together with her JourneyCare volunteers, Kathlyn is writing the story of her path from struggling with her hearing loss to discovering empowerment through action and advocacy.

“Who would have thought JourneyCare would have something like that?” Kathlyn says. “It’s wonderful that I am not doing this alone.”

A woman of deep religious faith, Kathlyn also connected with her JourneyCare Chaplain Gabriel Hardaway. She is a member of Fourth Presbyterian Church on Chicago’s Magnificent Mile, which partnered with JourneyCare this year for Dying to Know – a workshop created to remove the stigma of talking about death and promote being in charge of your life until the very end.

“My faith and the support of my church are the major reasons I am able to live peacefully,” Kathlyn says.

With her faith and her hospice team, Kathlyn says she feels supported and encouraged. And she encourages anyone with a serious illness to call JourneyCare sooner rather than later to connect with programs that may be right for them, including in-home primary care, Care Choices, Home Health or hospice.

“You should call JourneyCare before you think you need it. This is the most important thing,” she says. “Hospice is not the end. You get support, encouragement, and respect for life. My team and I are not focusing on my death, but how I can enjoy this life. That’s a really big difference.”

 

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