United Ostomy Associations of America (UOAA) has been advocating for quality of care since its inception. Recent initiatives include revising the UOAA Ostomy and Continent Diversion Patient Bill of Rights and creating patient/caregiver self-advocacy toolkits and provider educational resources. UOAA recognizes that a significant impact from our efforts could take many years. However, the small changes we are seeing inspire a steadfast determination. Our passion for improvement is driven by the many stories shared—tales of people trying to navigate self-care or dealing with inadequate care for their loved ones—and the underlying tone of helplessness. We need to start making our collective voices louder to make a positive change.

A recent encounter exemplifies what we mean by inadequate care. Over the past 5 years in my position as an UOAA Affiliated Support Group leader and a certified ostomy visitor, I have visited new ostomates and those facing ostomy surgery,” Ellyn Mantell writes. “I feel a tremendous responsibility to educate and mentor patients about some of the issues they may confront. I have an opportunity to establish a relationship with these people that will enhance their transition and help create a positive attitude for this life-saving surgery.”

Ellyn continues, “In October 2019, I received a call from a woman who asked me to visit her mother-in-law who was in her 70s and had a new ileostomy due to colon cancer. The ostomy was intended be temporary, placed to allow her body to heal. The surgeon was hopeful she would make a good recovery; he told the family he felt he had removed 99% of the cancer, and once she was stronger, she would undergo further medical treatment. She was discharged from the hospital to a rehabilitation center to gain strength and independence in her care. The social worker at the hospital had offered the family facility options where ostomy care would be provided.

“At the first rehab center, the patient’s pouch leaked, and she was left in her mess for hours with a promise that someone would be in to change her ostomy pouch. At one point, her husband went to the front desk and told the nurses they were going to have a lot to clean up if they didn't come soon to help with her pouch, but no one came for another 2 hours. While under this facility’s care, the patient became so sick with an Escherichia coli infection and broken down peristomal skin she had to be readmitted to the hospital. At this point, the patient’s daughter-in-law contacted me because her mother-in-law was overwhelmed and depressed. When I met the patient, she was sitting up, eating, talking, and responsive to my visit, regaining her strength from the E coli infection. We talked about her return to home, what she enjoyed doing, and her desire to live a full life.

“Fortunately, the patient responded well to powerful antibiotics, and she was sent to a second rehab facility. I visited her there a week later, and within 2 minutes I realized she was very sick. She was in a fetal position and had been vomiting for hours. Her nurse had taped a bag to her stoma that appeared to be taken from a stack of plastic bags (certainly not an ostomy pouch) with various surgical tapes. The nurse proudly showed me her handiwork. At neither facility had the patient been seen by a certified ostomy nurse or anyone trained to care for her ostomy.

“I was near tears when I called her daughter-in-law to report my fear that her mother-in-law was extremely sick. I knew she needed to be hospitalized and that night, she was moved back to the hospital with another dangerous infection and dehydration. As a result of her weakness and poor health, the patient’s oncology team could not continue her cancer treatment. Within a day or 2 of hospital readmission, the decision was made for her to be placed in palliative care. She would not be returning to the things she enjoyed; she was at the end of her fight and her life. It is with a heavy heart to report that this woman, who I came to care for, died in early December 2019. Although I don’t know her actual cause of death, I do know the ‘quality’ of care after her surgery was poor, which was distressing to her, her family, and to me. This is a scenario no one wants for their loved one.”

Jeanine Gleba also had an opportunity to speak with a grieving family member, who said, “Given her compromised health, she should not have been discharged from the hospital so soon after her surgery.” Furthermore, none of the staff in either rehabilitation center were properly trained to care for someone with an ostomy. This reality went beyond not having the proper supplies on-hand or changing the pouch. In both facilities, the patient became severely dehydrated due to her high output stoma, a situation that should have been monitored. Nor was routine bloodwork checked for issues such as sodium levels. According to the family member, “Every time she was in the hospital, she got better and received the proper ostomy care from the wound ostomy continence nurses. But there was never a continuation in quality of ostomy care after she was discharged from acute care. Ideally, there should be dedicated ostomy rehabilitation centers.”

This is one of the many unfortunate stories we hear throughout the year that cause us to ask why this issue continues to plague the ostomy community. We know that having the services of a WOC nurse or a trained ostomy nurse at health care facilities is limited. We also know that across the country, a tremendous gap exists regarding access to ostomy care. Regardless of the lack of access to this nursing specialty, it is the responsibility of a facility to provide the proper care necessary for the medical conditions of the patients they accept. How should facilities be held accountable?

UOAA stresses that ongoing, in-service education for nursing staff or anyone who cares for our patients is critical. Although each type of facility is regulated differently, patient-centered care remains crucial. If a facility can’t afford to hire a staff member to meet a particular specialty need, it is recommended that they hire a consultant to ensure positive patient outcomes. It is our hope that medical providers in every type of facility will fully understand and acknowledge that care does not stop after the patient leaves acute care. We encourage staff to speak up, be patient advocates, and meet with their administrators concerning the issues these patients face. More medical professionals need to be encouraged to get a certification in the specialty of ostomy care and education.

In 2020, UOAA will launch an awareness campaign to keep this issue in the spotlight. Can we count on you to make some noise with UOAA until every ostomate receives the care they deserve?

The opinions and statements of the clinicians providing Upfront With Ostomies are specific to the respective authors and not necessarily those of Wound Management & Prevention, or HMP. This article was not subject to the Wound Management & Prevention peer-review process.