When someone you love is facing a terminal illness, every moment is precious. You become more aware of the fragility of life and the importance of being present. Trivial disagreements, daily stresses and minor inconveniences are replaced by a deeper appreciation for the small things that accumulate into a life spent together—the comfort of a shared meal, every laugh and every hug. Embracing the support of a compassionate care team allows you to focus on what truly matters.
The long and winding road
Brian Devine had always been healthy and active, never experiencing severe illnesses or hospitalizations. In the fall of 2019, he began complaining of discomfort in his upper thigh. Brian’s wife, Debra, also noticed something was amiss.
"There had been changes in his behavior and attitude and a little bit of unusual tiredness," Debra recalled. He thought he had a muscle spasm that just wouldn't loosen up." A few months later, they visited a walk-in clinic.
During this visit, initial examinations revealed what appeared to be either a mass or a blood clot. After numerous doctors’ appointments and extensive testing, Brian was diagnosed with stage 3 undifferentiated pleomorphic sarcoma (UPS), a rare form of cancer that mostly begins in soft tissues. "They did some staging and determined it was pretty advanced and very aggressive," Debra said.
Let it be
Brian underwent five weeks of radiation; then, in the spring of 2020, he was confronted with a difficult choice: limb salvage surgery or amputation. "He didn't want to spend time in the hospital with long recoveries and wound infections. He just decided, very bravely, that it was better to amputate his leg, and that began our journey," Debra said.
In June 2020, subsequent scans revealed that, despite the surgery, the cancer had advanced more rapidly than anticipated. It had now spread to his lungs, reaching stage 4, prompting Brian to begin chemotherapy treatments.
This realization marked a dramatic shift in their outlook. "That was the first time we started considering what would come next," Debra said. "If hospice needed to be entering the picture, or if we would stay on the path of palliative care and hospitalizations with chemotherapy."
Debra says Brian decided to continue chemotherapy for about a year and a half. However, after an overnight hospitalization in August of 2022 for dehydration and fatigue, he was, once more, presented with two choices: clinical trials or hospice. Brian's desire was clear. He wanted to spend whatever time remained with his family and friends.
Here comes the sun
When patients and their families enter hospice, they are welcomed by a compassionate team that includes a nurse, social worker and chaplain committed to providing comfort and support. The hospice care team works closely with each patient and their loved ones to craft a personalized care plan that honors their unique needs and wishes.
"Hospice is definitely an interdisciplinary approach and a holistic approach," said Karen Kosberg, chaplain, Parkview Hospice. "We bring in whatever they need, wherever they are."
The hospice team ensured Brian's care was not just about managing his symptoms but also about maintaining his quality of life. "I came home one day from work, and his nurse Amy was here, and they were just talking about the usual things, books and music. She didn't have to act as a nurse and he didn't have to be the patient," Debra said.
Witnessing a loved one approach the end of life can be incredibly difficult, but moments of connection and normalcy can help ease those feelings and provide a much-needed respite from the realities of their illness.
"When hospice comes in, we acknowledge that this is the end of life, and so we talk openly about that. We're here to guide them and to journey with them so that they are not alone in that process," Karen said.
In my life
Hospice care is often associated with the eclipsing of one's life, but it doesn't mean that patients have to stop living. For Brian, it meant being able to continue engaging in beloved activities like riding his adaptive bike around town, taking extended vacations with his family and visiting the Rock and Roll Hall of Fame to see the Beatles exhibit (a bucket list aspiration he was adamant to fulfill).
"You know, as an amputee, that was vitally important, too," Debra said. "They helped him immeasurably have the freedom to enjoy every day based on whatever personal level that meant."
"Our goal is to help them live as fully and as comfortably as they can until their last breath," Karen said.
The hospice team's unwavering commitment to providing individualized attention and support ensured Brian had the opportunity to live on his own terms.
"We'd never really been given a timeline and he could tell that there were changes happening," Debra said. "He worked so hard to stay active; I think even he expected to be here longer than he was, but we are blessed to have had him for as long as we did."
Brian passed away on October 11, 2022.
All you need is love
Debra expressed profound gratitude for the care Brian and herself received from his providers throughout his journey.
"We had a great team of nurses in the hospital and doctors at the [Parkview Packnett Family Cancer Institute]. They helped us evaluate and gauge the next best step to help him," she said. "Everyone from our nurse navigators to the social worker to the therapist was terrific."
Although hospice is primarily centered around the patient, that same level of consideration is extended to the patient's loved ones after they have passed.
Reflecting on the ongoing support, Debra shared, "It's been a year and a half, and they are still checking in on us. I know that if I wanted to reach out to them personally, I could, and they would still remember us and be there for us."
Choosing to enter hospice care can be an overwhelming and emotional decision. Embracing this option sooner enables families to cherish and make the most of their remaining precious time.
"I would say, don't hesitate. Run, don't walk. It was the lifeline for us, to so many blessings. The care that lifted his spirits, the respite and care that they gave myself and our family, was wonderful. If we had not had as caring a team as part of his care, we would not have been able to enjoy the special days he had left.”
Learn more
If you have questions or want more information about hospice and palliative care services or a patient referral to Parkview Hospice, please call 260-373-9800 or 800-363-9977. You can also complete our online form here. We are happy to answer your questions and walk those paths with you.
