Smelling the Roses During Hospice Care
Throughout his life, Edward Rafuse adored the field of science. He attended the University of South Dakota in Vermillion as well as the South Dakota School of Mines & Technology in Rapid City. His career as an engineer took him on an exciting path of working with radium, the oil fields and even contracting the cleanup crew of the plutonium bomb.
Rafuse and his wife, Lavonne, lived in Washington state where he was stationed until his ALS diagnosis. While it was a turn in his story that he wasn’t expecting, he counts it all as part of the adventure.
Amyotrophic lateral sclerosis (ALS) is a neuro-degenerative disease that attacks the nerves of the brain and spinal cord. An MRI scan confirmed that neurons traveling from the brain through the spinal cord were not being transmitted to Rafuse’s muscles.
“It’s a condition that moves at its own pace,” said Rafuse. “Little by little, you find your body losing abilities.”
Faced with such a situation, Rafuse concluded that you have two options of which to choose: either focus on the mud you’re trudging through or smell the roses on the journey.
Rafuse chose the roses.
After the diagnosis, he and his wife moved into Dow Rummel Village in Sioux Falls with the help of his family. Lavonne has her own independent living space while Ed resides in the nursing home wing.
His room is decorated with pictures of his family and posters of the universe that he finds so beautiful and inspiring.
Palliative care was implemented at the beginning of his journey. “When you have a serious illness, palliative care focuses on managing pain and symptoms,” explained Maren Ernst, Avera clinical care coordinator. “This service is available to all ages while treatment continues.”
However, as the ALS progressed, Rafuse made the decision to implement hospice care provided through Avera@Home.
When a patient’s prognosis reports that he or she may have six or less months to live, hospice supports this patient during the final journey along with his or her caregivers. Procedures and treatment designed to improve the health of the patient cease. The goal of hospice is to keep the patient physically comfortable, as well as emotionally and spiritually well.
If a patient is nearing that point where hospice care is the next step, the experienced staff of Avera@Home talk over crucial decisions and enhance quality of life by supporting the whole person. They discuss these important issues right at your kitchen table, in your living room, or wherever the individual and the family feel most comfortable.
“People often choose hospice care when their condition isn’t improving with treatment,” said Brooke Theisen, Avera@Home patient care coordinator. “In fact, continuing treatment may become burdensome to the patient’s body.”
Sometimes people resist the thought of hospice care because of the perceived finality of such a decision. However, the patient can turn back to treatment if they so desire. The benefit of hospice is that oftentimes the patient and family have enough time to work through important end-of-life discussions when the patient can communicate effectively.
“I have heard many times from families and patients, ‘I wish I would have started hospice sooner,’” said Theisen. “I have never heard, ‘I started hospice too soon.’”
Rafuse and his wife have been pleased with the gracious nursing care and ease of using the Avera@Home program. The helpful staff manages the burden of scheduling Rafuse’s office visits with his doctor. At least twice a week, the Avera@Home hospice team visits Rafuse to check his progress, medications and comfort level.
Along with the ALS Association, Avera@Home hospice services assisted in providing a high-back wheelchair and low-pressure specialty mattress to aid in his comfort.
Impressed by his coordinated care, Rafuse said, “When they come into the room, they know exactly where the last person left off and what needs to be done next. If there has been anything that my family or I needed, I know that all I have to do is ask and it will be taken care of.”
Rafuse offered this encouragement to others going through similar trials, “Choose kindness, compassion and faith; negativity only darkens the cloud over these situations. Lean on your care team, family, friends, God and the things you were passionate about throughout life.”