You’re Not Alone - Patient bill of rights

You’re not alone!

An estimated 725,000 to one million people in the United States live with an ostomy or continent diversion, according to the United Ostomy Associations of America (UOAA). What’s more, every year, approximately 100,000 people in the United States undergo this life-saving surgery as you did.

Despite these significant numbers, many ostomates continue to experience inadequate and inconsistent care. Ostomy advocates are fed-up and taking many steps to do something about it.

Improper ostomy care can have negative consequences for ostomates that include diminished quality of life, greater hospital readmission rates, and poor patient outcomes.

Facilities and geographic areas vary. Over the years UOAA has received hundreds of stories from people who have received poor care. Ostomy advocates want to put an end to these heartbreaking patient care stories—a travesty especially in the United State where patients receiving medical care have certain health rights. For ostomy and continent diversion patients these rights are known as the “You Matter! Know What to Expect and Know Your Rights - Ostomy and Continent Diversion Patient Bill of Rights” (PBOR).

These rights define and provide a guide to patients and health care professionals regarding best practices for receiving and providing high quality ostomy care during all phases of the surgical experience—preoperative, postoperative, and throughout the lifespan of living with an ostomy or continent diversion.

This year, ostomy advocates produced a new policy paper that calls 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.

“Heartbreaking” is the way whitepaper co-author and UOAA Advocacy Co-Chair Joanna Burgess-Stocks, BSN, RN, CWOCN describes the poor care received by many ostomy patients.  Joanna, who has been living with an ostomy since age three, says, “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

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.

Patients who receive proper education have less complications, less hospital readmissions and higher quality of life scores, according to evidence-based research the white paper cites.

The authors also validate guidelines to address cultural needs and isolation and the emotional toll of surgery and support group learning with peers.

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.

It’s reassuring to know we have such dedicated professionals and organizations invested in us and safeguarding our well-being. Empowerment grows out of the many voices that can and will be heard when people work together.

Note: 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.

Written by Barbara Mannino
Writer, Speaker, Brand Storyteller and Content Marketing Consultant
www.barbaramannino.com