Advocating for Best-in-Practice Ostomy Care: Are You in the Driver’s Seat?

Regardless of the setting a medical professional works in, when you provide ostomy care, you should be asking yourself, “Am I able to provide the needed ostomy education and care within the time frame I have? Who will I refer my patients to should they need further assistance once they are discharged from my care?” Suppose the conclusions you come to are unresolved regarding any aspect of the ostomy care you provide. In that case, you should then ask, “Do I know how to make needed changes happen? Am I looking for direction to make changes?”

A GUIDELINE FOR OSTOMY CARE: BEST IN PRACTICE

The Advocacy Committee of United Ostomy Associations of America, Inc. (UOAA) embarked on a mission 5 years ago to help patients and care providers understand what best-in-practice ostomy care looks like by creating and then revising in 2021 the Ostomy and Continent Diversion Patient Bill of Rights (PBOR). The PBOR identifies the needs and expectations for those requiring this type of surgery and the community of people currently living with an ostomy or continent diversion. It also outlines recommendations for best-in-practice ostomy care for medical professionals. The PBOR can be used as a road map to assist the medical professional in ensuring that ostomy care standards are being followed and, if not, where the deficits in care are found. Knowing where the strengths and weaknesses are in your ostomy care programs puts you in the driver's seat to reevaluate your programs, embrace what is working well, and set goals for needed changes.

FOCUSING ON THE PATIENT BILL OF RIGHTS

In the ostomy and continent diversion communities, there is concern among patients and health care professionals that the standards of care outlined in the PBOR are not being met in all health care settings in the United States. This results in poor-quality ostomy care for many individuals facing ostomy surgery and for those already living with an ostomy. A study by Miller¹ was the first to report a knowledge gap between patients and medical professionals regarding the provision of the standards of care outlined in the PBOR. Results indicated that some care measures were not consistently provided in accordance with the PBOR to patients with an ostomy and that ostomy care in hospitals needs improvement. Health care professionals are also concerned that the patient-centered recommendations outlined in the PBOR need to be strengthened by published studies.

VALIDATING THE PATIENT BILL OF RIGHTS

To address these concerns, UOAA brought together a diverse task force that represented patients, health care professionals including surgeons, leading nurse organizations such as the Wound, Ostomy, and Continence Nurses Society, and industry. The goal was to create consensus statements validating the PBOR through a comprehensive literature review. Through the valuable work of the task force, each component of the PBOR was substantiated as being evidence based. For example, the PBOR states that during the preoperative phase, for standards of practice to be met, patients must receive an explanation of the surgical procedure and the rationale for surgery. In addition, education should be provided on living with an ostomy/continent diversion and self-care after discharge. These statements were validated by multiple citations in the literature that showed increased quality of life for patients who received these standards of care; thus, the white paper, “Ostomy and Continent Diversion Patient Rights: Research Validation of Standards of Care,” corroborates the PBOR as a guideline that provides the standards of high-quality care for best in practice for those living with an ostomy or continent diversion. It also shows that when patients receive the standards of care outlined in the PBOR, quality of care improves and costs decrease.² Download the white paper from here. 

DRIVING CHANGE

UOAA invites you to pick up your road map, the PBOR, and use it as a tool to validate how you care for your patients. Use it to reevaluate the current practice in your workplace and direct you on the path for needed changes. The PBOR can assist you in being an influencer in your practice. A situation from my practice can be used as an example.

While running an outpatient ostomy care service, I saw many people who traveled long distances for care. Some of these people required postoperative care, while others had long-term existing ostomies and had run into difficulties. One patient commented that she could not believe she had to travel 2 hours to receive ostomy care. I gave her a copy of the PBOR and told her to give it to the wound ostomy continence nurse at her facility and work with her to develop outpatient services. Together, they brought the document to the administration of their facility. Their outpatient ostomy services came into existence 2 years later.

If you see deficits in the ostomy community or your practice, are you willing to ask yourself, “Will I contribute to driving change and being part of the solution? Will I adopt the PBOR in my workplace?”

CONCLUSION

The PBOR provides a solid foundation to build efforts to educate and inform patients and medical professionals. The white paper shows proof that best practices work. The research validation of these quality practices will strengthen the impact and encourage adoption into practice. This adoption will drive the needed quality improvement change across all health care settings for the ostomy and continent diversion community and support the National Quality Forum Initiative: The Care We Need: Driving Better Health Outcomes for People and Communities.³ Only until every ostomy or continent diversion patient receives these standards of care in all health care settings will they receive the “care they need.”

REFERENCES

1. Miller LR. Ostomy care during hospital stay for ostomy surgery and the United Ostomy Associations of America Patient Bill of Rights: a cross-sectional study. J Wound Ostomy Continence Nurs. 2020;47(6):589-593. doi:10.1097/WON.0000000000000709

2. Burgess-Stocks J, Gleba J, Lawrence K, Mueller S. Ostomy and continent diversion patient rights: research validation of standards of care. United Ostomy Associations of America, Inc.; Accessed January 4, 2022. Download from here. 

3. National Quality Forum. The care we need: driving better health outcomes for people and communities. Accessed January 4, 2022. https://thecareweneed.org/

Joanna Burgess-Stocks, BSN, RN, CWOCN, has more than 37 years of experience in nursing. She has had over 12 years of experience as a full scope wound ostomy continence nurse, which has included acute care, outpatient care, and industry settings. As a person living with 2 ostomies, she is committed to patient advocacy. She has served on the United Ostomy Associations of America, Inc. (UOAA) Advocacy Committee as cochairperson for over 5 years. Jeanine Gleba, MEd, has been the advocacy manager at UOAA for 6 years. Please send inquiries to advocacy@ostomy.org. Information in this article was provided by UOAA. UOAA does not endorse particular products, manufacturers, providers, or other sellers of ostomy products. This column was not subject to the Wound Management & Prevention peer-review process.