As home healthcare clinicians, the Day in the Life of column in this issue (see page ..) is not something we like to read. The author, Keagan Lynggard-Hysell obviously had a less than positive initial interaction with a home healthcare nurse. Why? Although ostomies are not something we see every day in home care, approximately 175,000 surgeries are performed in the United States every year, so it is fair to say that new ostomates in home care are a pretty regular occurrence.
United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for people who have had or who will have an ostomy or continent diversion surgery. The UOAA Advocacy Committee is a group of four Wound Ostomy Continence (WOC) nurses (two with ostomies), a nonclinician ostomate, and a UOAA staff member. The advocacy committee is guided by an agenda that is grounded in the core values that form UOAA's vision: "A society where people with ostomies or continent diversions are universally accepted and supported socially, economically, medically, and psychologically."
We have been volunteers on the UOAA Advocacy Committee for less than a year and this is where we learned of Keagan's experience and asked her to consider writing her story for the column "A day in the life of..." in Home Healthcare Now. Through the UOAA advocacy committee we hear about the hundreds of phone calls the office receives from desperate patients seeking help. Many are sent home from the hospital and don't know how to get supplies or change their appliance. They call in desperation and sometimes anger. Are home healthcare agencies failing the ostomy population?
When visited in their homes, patients quite often complain about the lack of knowledgeable ostomy nurses in whatever facility they came from or the home care agency. We explain to them that ostomy care is specialized and we don't get much training in nursing school for this condition. We can't all know everything about all aspects of healthcare. Keagan's story is more common than we care to admit, but we can learn a lot from it. She encourages us to be confident and reassuring even when we feel completely lost. If feeling lost, follow through and find the answers. Call a supervisor, contact a colleague, email or call the WOCN Society, or ask ostomy manufacturers/distributors for informational resources or in-services. Seek out any advice you can to help your patient and alleviate their fears so they can feel secure that you are going to help them. This will reassure the patient that they are not alone.
Patients with ostomies have specific rights and we should know how to access resources to achieve those rights. Ostomates have a right to appropriate care. Not every agency has access to an ostomy-trained or -certified individual. But it is the agency's responsibility when they accept the patient to provide them with the care they need. Ostomates also have a right to the proper supplies for their pouching application system-supplies that are personalized to fit their unique stoma and skin needs and enable them to have 3 to 5 days of leak-proof wear. These are just two of the rights listed on the published and well-accepted UOAA Ostomy and Continent Diversion Patient Bill of Rights (PBOR).
The UOAA Advocacy Committee developed an informational poster (https://www.ostomy.org/wp-content/uploads/2018/10/5_star_HH-UOAA_handout.pdf) for the 2018 National Home Care & Hospice Exposition explaining the PBOR and how it can influence the direct care provided by home care clinicians and how key aspects of the PBOR can facilitate outcomes that may lead your agency to being a five-star agency. We encourage all of you to look at the poster and ensure that your agency has policies and procedures that are consistent with the PBOR. More importantly, we can be confident that our patients will achieve a better quality of life because we left them better equipped to start their new "normal."
RESOURCES:
United Ostomy Association of America Inc.-http://www.ostomy.org/advocacy/
Wound Care Education Institute-https://www.wcei.net/
Wound Ostomy and Continence Organization-http://www.wocn.org