Every day, the United Ostomy Associations of America (UOAA) aims to empower people to get the care they deserve in order to live meaningful and fulfilling lives. Despite our modern era of ostomy care, which includes a variety of well-made products and advancements in ostomy nursing as a profession, the lack of ostomy care or the care provided by inexperienced providers limits those lifestyle choices. Here is some direction as to how you can be an influencer and raise your voice to make a difference in the lives of this vulnerable and underserved population.

In 2018, the UOAA received 2000+ calls from ostomates struggling with ostomy self-care. A person with an ostomy should be treated as seriously as someone living with other chronic medical conditions such as diabetes. For example, it would be unsafe and unacceptable to discharge an insulin-dependent person with diabetes from the hospital without providing training in giving themselves an injection, self-managing their diet and blood sugars, and knowing how to obtain their supplies. Likewise, it is not safe or acceptable for persons living with an ostomy to not have training in how to care for their ostomy, nutritional guidelines such as preventing dehydration, and guidance on accessing care and supplies.

In Joanna’s 1-day-a week outpatient ostomy clinic, it is not uncommon for someone to arrive with a towel wrapped around their waist due to the inability to keep a pouching system or for someone to arrive in tears due to pain and frustration or for a loved one to wait in the waiting room because they “just can’t look.”  What is not uncommon enough is hearing the words, “Death would have been better than this.” If this is happening in our small community, what is happening in yours?

Clinicians must understand that health care delivery for people living with an ostomy or continent diversion across the United States is not equal. Some but not all geographic areas are well-served by nurses who have been trained in ostomy care. Additionally, ostomy care is not equal from facility to facility. People may receive care that meets quality standards in one facility, but when they are transferred to another facility they receive little or no care. Plus, the number of ostomy nurses in the home and outpatient settings is sorely lacking. 

The magnitude of this problem leads us to believe this is a crisis in the United States. To tackle this issue, a consensus panel agreed that the UOAA’s Advocacy Committee’s top priority should be updating the Ostomy and Continent Diversion Patient Bill of Rights (PBOR). This recommendation was met with various initial reactions. Joanna (Advocacy Chair) asked why. “We don’t have enough ostomy nurses to provide these services,” she said. “I am perplexed by the suggestion. We don’t have enough ostomy nurses to provide fundamental care to the entire ostomate population. How could we possibly provide the full service set forth in the Bill of Rights?” However, after pondering the idea for several weeks, her advocacy leanings prevailed and she realized that restructuring these patient rights actually could be the force for needed changes.

The revised PBOR details the care people with an ostomy should expect to receive initially and over their lifetime. It calls for health care professionals who provide care to people with ostomies to be educated in the specialty and to observe established standards of care. The new document is meant to be used as a tool to guide care for patients and the medical community, a powerful means for patients and families to be active partners in their care in order to ensure the best outcomes. The revised PBOR is meant to inspire nurses to be advocates and to inspire excellence in themselves, their teams, and their organizations. Clinicians must be a voice on behalf of their patients to ensure they are receiving optimal care and to encourage them to be self-advocates. Your voice matters in creating educational tools for patients, in creating outpatient ostomy clinics, and in ensuring this underserved population receives the recognition and care necessary for the best outcomes.

The new PBOR and accompanying tools has been met with an enthusiastic response from health care organizations, professionals, industry, and the ostomy population across the country. The clamor for more access to care is growing louder. The time is right to effect change. UOAA believes that in this new era of blogs, newsletters, discussion boards, and social media, we are in the best position to effect necessary changes. Let’s work to promote better care and increase access to care. Let’s find a way to get an ostomy clinic in every community. Switch on your advocacy light; together we can make it happen.

Here are ways that you can act as an influencer and be a part of the change:

  • Hang the PBOR in your facility and carry the wallet card to serve as a reminder that you are an advocate for and with your ostomy patient.
  • Share the wallet card with your patients and spread the word.
  • Inspire excellence! Download the ostomy nurse and nursing practices to utilize and support the PBOR and share with your colleagues.
  • Advocate for these best practices in your health care settings to make them standards of care.
  • Work with your hospital administrators to hire more certified WOC nurses or ostomy management specialists or ostomy care associates and to start outpatient ostomy clinics.
  • Contribute to our data collection here to improve patient outcomes.