THE VALUE OF BEING SEEN
As Legacy Society members, the Bethkes are at peace knowing their gift will help others receive the same high-quality, compassionate care that made such a difference in their lives, as well as the life of their son, Steve.
Steve Bethke was born ten weeks prematurely on February 15, 1980, in Madison. Just before his first birthday, Steve was diagnosed with cerebral palsy, a condition that occurs when parts of the brain that control movement are damaged or do not develop fully. Steve began using a wheelchair before his third birthday and underwent several procedures throughout childhood to address his medical needs.
During these early years, Steve doctored at a large Wisconsin health system that specializes in neurodegenerative diseases and developmental disabilities. Carl and Joan were initially satisfied with Steve’s care, but over time, they became less so. “At times, we felt Steve was treated as a medical case instead of a person,” recalls Joan.
When Steve was 7, things changed. Steve was undergoing orthopedic surgery and the procedure had to be halted so Steve could be treated for anaphylactic shock. Later, when it came time to reschedule the surgery, Carl and Joan did not feel comfortable proceeding. While they were considering what to do, the parents of some of Steve’s classmates shared their positive experiences with Gundersen Health System. At their recommendation, Joan took a tour of the La Crosse campus, and the family decided to move Steve’s care to Gundersen.
It didn’t take long for Carl and Joan to notice a difference. “Steve was legally blind, nonverbal and non-ambulatory,” shares Carl, “but everyone at Gundersen took time to get to know him and how he communicated. They greeted him and interacted with him. Steve was treated as a person—not a case to be studied.”
A CARE TEAM THAT TRULY CARES
One of the first providers the Bethkes met with at Gundersen was Todd Mahr, MD, a pediatric allergist who diagnosed Steve with a latex allergy—the likely reason for his previous anaphylactic shock. With this information, the abandoned surgical procedure was rescheduled at Gundersen. Joan knew Steve was in good hands when she found Dr. Mahr sitting near Steve’s hospital room around midnight the evening before the surgery. “Dr. Mahr made a joke about why he was at the hospital so late, but we knew he was consulting with the surgical team and watching out for Steve,” remembers Joan. “That made a huge difference to us.”
Over time, Carl and Joan continued to be impressed by the dedication of Steve’s care teams. When he was 12, for example, Steve needed surgery on his hip. The procedure was successfully performed by Virginia Wintersteen, MD, and once the cast was removed, Steve began physical therapy at a facility in Richland Center. At the end of a therapy session, Joan suspected that something was wrong with one of Steve’s legs. She contacted Dr. Wintersteen who suggested Steve come to Gundersen for an X-ray. By the time the family got to the ER, it was early evening—long past the end of Dr. Wintersteen’s shift. Yet, the surgeon had waited for them to arrive so she could assist with Steve’s diagnosis.
“Looking back, we have so many examples of times we were impressed with Steve’s care at Gundersen,” shares Joan.
COMPASSIONATE CARE WHEN IT MATTERS MOST
In 2017, Steve moved to Pine Valley Community Village, a nursing home in Richland Center, after Joan was diagnosed with repetitive motion injury. Steve adapted well and quickly formed relationships with the staff and other residents, which was a great comfort to Carl and Joan.
“We developed trusting relationships with Steve’s caregivers. Since Steve was a people person, he was always excited to go to his medical appointments because he knew he would be seeing his friends.” – Joan Bethke
In March 2023, though, Steve was unexpectedly diagnosed with stage three kidney disease after a somewhat routine blood test. He was due to see a nephrologist on June 2 when the nursing home called to say that staff were having a hard time waking Steve. He was then transported to the local hospital for tests before being sent by ambulance to Gundersen. The next day, Steve passed away peacefully with Joan and Carl by his side. Naturally, the loss of their son was incredibly difficult, but the couple continues to be grateful for the care they all received in the final hours of Steve’s life.
“We were so touched by the care with which Steve’s doctor helped us prepare for Steve’s final moments. She took the time to discuss his condition, to verify the advance directive that was already in place and to offer comfort and support,” explains Joan. “In that moment, Carl and I decided we wanted to help ensure others could receive the quality of care that Steve and our family has received from Gundersen.”
When it came time to update their will, Carl and Joan decided to include Gundersen Medical Foundation in their estate plan. They contacted the Foundation and expressed their wish for the specific use of the bequest to be decided by the Foundation. “We trust the Foundation to be good stewards of our gift,” shares Carl, “and however the gift is used, we know there will be a positive impact.”