An ostomy patient visits with a certified ostomy nurse at a stoma clinic in 2019. Ostomy advocates say research verifies standards of care such as access to a certified healthcare professional.

Ostomy advocates are fed-up with heartbreaking patient care stories and have produced a new policy paper to call for “systemic change.” The report spearheaded by United Ostomy Associations of America (UOAA) and published in the May/June issue of the Journal of Wound, Ostomy and Continence Nursing (JWOCN) shows “substantial evidence in research” validating recognized standards for ostomy care.

“We should not see another person afraid to leave their home because of preventable leaks, use duct tape to attach their colostomy pouch, or feel alone and unable to cope after this life-saving surgery,” says co-author and UOAA Advocacy Co-Chair Joanna Burgess-Stocks, BSN, RN, CWOCN. Burgess-Stocks, who has been living with an ostomy since age three says, “It’s heartbreaking and does not need to be this way.”

The report shows that when this “underserved patient population” receives the standards of care outlined in the Ostomy and Continent Diversion Patient Bill of Rights, outcomes greatly improve. UOAA estimates 725,000 to one million people are living with an ostomy or continent diversion in the United States, and approximately 100,000 ostomy surgeries are performed each year. Ostomy surgery diverts bodily waste into a specially fitted pouch also known as an ostomy bag applied adhesively around a surgical opening called a stoma.

News reports in January of this year revealed that this underserved population may even include 24-year-old former "Jeopardy!" champion Brayden Smith, who passed away following colorectal surgery for ulcerative colitis. NBC News reported that his parents are alleging that “nursing staff failed to prepare him for life with a stoma including properly fitting him for equipment or helping him to order supplies." This alleged lapse in care resulted in ostomy bag leaks "causing Brayden's waste to get all of his body," the report details. And in written testimony certified ostomy nurse Tara Michelle Bohannon stated that the nursing staff’s role was “well-below the standard of care.”

“As colorectal surgeons who care for patients with ostomies and continent diversions from the beginning and throughout their healthcare journey, the American Society of Colon and Rectal Surgeons fully endorses the Ostomy and Continent Diversion Patient Bill of Rights; Research Validation of Standards of Care,” says Jenny R. Speranza, MD, FACS, FACRS, Chairperson, Professional Outreach Committee of the American Society of Colon and Rectal Surgeons.

“We believe that by acknowledging these best practice guidelines, validated through evidence-based research, individuals with ostomies and continent diversions everywhere will have better access to the essential care they deserve. Through United Ostomy Associations of America’s, tireless advocacy, education, and championing of Ostomate Rights, this Patient Bill of Rights will bring high quality care to the forefront of the healthcare community,” says Speranza.

The white paper also addresses existing healthcare disparities in the care received by patients in rural areas and the prevalence of facilities around the country without a certified ostomy care nurse on staff.

“The Ostomy and Continent Diversion Patient Bill of Rights and the white paper substantiate that whether one has their ostomy surgery at a quaternary care hospital or a much smaller institution in the middle of the country, a basic level of care, and principles thereof, should be the pillars of ostomy management for all,” says Richard Rood, MD, FACP, FACG, AGAF, FASGE Professor of Medicine, Washington University School of Medicine, St Louis. Dr. Rood has himself lived with an ostomy for 52 years and serves as Chair of UOAA’s Medical Advisory Board. “This quality initiative will guarantee an improved quality of life for our patients and lead to cost savings as well,” Rood says.

The white paper cites research that shows “patients who receive proper education have less complications, less hospital readmissions and higher quality of life scores.” 1,2

The authors also validate guidelines to address cultural needs and isolation and the emotional toll of surgery. “Ostomates report that these challenges are easier to speak about with another ostomate. They favor group learning with peers. Studies have concluded that layperson led self-management education may improve self-efficacy, self-rated health and cognitive symptom management.” 3,4

The prevalence of fears and stigma associated with ostomy surgery can put patient lives at risk and the authors hope that the adaption of these best practices will ultimately save lives.

Ellyn Mantell, an ostomate, UOAA advocate, and ostomy support group leader used the Bill of Rights to successfully lobby hospital administrators to start an outpatient ostomy clinic in New Jersey. "It is one thing to recognize a problem, but quite another to be empowered to find a solution. The Patient Bill of Rights empowered me to fight harder for the creation of an Outpatient Ostomy Center to support ostomates adjust after leaving the hospital. Our fear was lessened by the establishment of this center devoted to our care. Without the Patient Bill of Rights, I may have felt limited in what I could accomplish,” Mantell says.

The white paper is endorsed by organizations such as the American Society of Colon and Rectal Surgeons, Wound Ostomy Continence Nurses Society®, World Council of Enterostomal Therapists®, Wound Ostomy Continence Nurses Certification Board®, International Foundation for Gastrointestinal Disorders, Crohn’s & Colitis Foundation, Fight Colorectal Cancer and Digestive Disease National Coalition.

In an endorsement letter, supporters hope research validation “will strengthen the impact and encourage adoption into practice” and align with community health improvement goals set by the National Quality Forum. The research validation also aligns with the Centers for Medicare and Medicaid Services (CMS) recently launched National Quality Strategy, an ambitious long-term initiative that aims to promote the highest quality outcomes and safest care for all individuals with a person-centered approach. 5

1.Gocmen Baykara Z, Demir S, Karadag A. Family functioning, perceived social support, and adaptation to a stoma: a descriptive, cross-sectional survey. Wound Manag Prev. 2020;66(1):30–38. doi:10.25270/wmp.2020.1.3038. 2.Nagle D, Pare T, Keenan E, Marcet K, Tizio S, Poylin V. Ileostomy Pathway Virtually Eliminates Readmissions for Dehydration in New Ostomates. Dis Colon Rectum. 2012;55(12):1266-1272. doi:10.1097/DCR.0b013e31827080c1 3. Danielsen AK, Soerensen EE, Burcharth K, Rosenberg J. Learning to live with a permanent intestinal ostomy: impact on everyday life and educational needs. J Wound Ostomy Continence Nurs. 2013;40(4):407–412. doi:10.1097/WON.0b013e3182987e0e. 4. LeBlanc K, Whiteley I, McNichol L, Salvadalena G, Gray M. Peristomal medical adhesive-related skin injury: results of an international consensus meeting. J Wound Ostomy Continence Nurs. 2019;46(2):125–136. doi:10.1097/WON.0000000000000513. 5. CMS National Quality Strategy. (Centers for Medicare & Medicaid Services, April 2022). https://www.cms.gov/files/document/cms-national-quality-strategy-fact-sheet-april-2022.pdf. Accessed on June 6, 2022.

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