Hospice: Living and sharing time on their own terms

Creating an environment in which patients and family members can develop a personalized support plan with their medical providers is one of the most rewarding aspects of hospice care. Every patient’s and family’s situation is different, and family members often need as much support as patients.

“They didn’t just take care of Mom, they took care of all of us,” said Ann DeMoss, whose mother, Betty Cox, was part of the Norton King’s Daughters’ Health hospice program for 20 months. “They asked how I was doing, asked if I would like to change anything. They even got to know my family and would ask how they were doing.”

Deborah Jacobson’s husband, Bob, received nearly 15 months of hospice care from Norton King’s Daughters’ Health. He wanted to be at home, not in a hospital, at the end of life. He and Deborah were able to develop a plan to implement his wishes.

“Everyone who came to our home was meaningful to him,” Deborah said. “Bob knew he had value. He mattered to them (hospice nurses and team). They would talk to me. Noel (Bob’s primary nurse) would tell me what to expect. That helped make it easier. I don’t know what I would have done without them.”

While supportive and palliative care for the patient remains a critical component of hospice care, the program’s overall benefits supersede those goals. Team members connect patients with resources, facilitate arrangements for post-hospice care and provide support around the home as needed. Trained hospice volunteers allow family members to take breaks and maintain some normalcy in their life.

A strong and independent woman, Ann’s mother moved to Madison, Indiana, at age 71 to be close to family. Betty enjoyed her new surroundings for many years before developing a series of significant health issues as she approached her late 80s. After a heart attack in March 2018, Ann followed her mother’s wishes to avoid further surgeries and visits to the hospital. With the help of her mother’s physician, Ann arranged to place her mother in hospice care, allowing her to stay home.

“Mom was in the living room, the hub of the house,” Ann said. “She felt like she was still in charge. She could see the neighbors and watch what was going on outside. My mom was deeply religious, and the hospice chaplain would come by regularly during her journey. That meant a great deal to her.”

Deborah recalled the relationships she developed with Bob’s hospice caregivers. In fact, there were times when she would make omelets for breakfast and share a meal with the team. When Bob passed on Easter morning, Noel stayed with Deborah and her family to be a source of comfort. Deborah and Bob had been married for 51 years.

“It can be overwhelming, particularly at first,” Deborah said, “but it all came together, and we all got to know each other. Noel and I still stay in touch. We became friends.”

When asked what she learned during her hospice experience, Ann focused on her mother’s opportunity to make her own choices.

“Hospice doesn’t mean you are giving up,” Ann said. “It means letting them make choices that make them happy. Mom would not have done well in a long-term care situation.”

During her care at home, Mom’s friend who crocheted brought skeins of yarn for her to roll into balls. She enjoyed all the tasks we could find for her to do to help her feel useful and busy in her own environment.”

Amberly Cash serves as director of home health and hospice for Norton King’s Daughters’ Health. Working with patients and families to meet specific goals is something she and her team focus on during every new consultation.

“When patients come to us, they know they have limited time, and they want that time to be meaningful,” Amberly said. “The family likes to know what the goals are, and patients let us know what they want their goals to be. As a team, we may offer suggestions, but ultimately, decisions are left up to the patient and family.”

Amberly can’t forget one patient who had a goal of getting back to the National Corvette Museum in Bowling Green, Kentucky. He had been several times before and wanted to make one final trip. Working with his family, who acquired a van to facilitate comfortable travel, the hospice team found a device that would allow the patient’s oxygen tank to operate via the auxiliary cord in the van. A hospice nurse volunteered to go on the trip to be sure the patient was safe.

“If there is a way, we’ll try to help them reach their goals,” Amberly said. “It takes some extra work, but that is the standard of care we want to provide — above and beyond.”

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