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49% of Respondents Report they Received Inadequate Information and Communication From their Provider at the Hospital

By Leslie Riggle Miller, M.A.

My name is Leslie Miller and I am a 25-year cancer survivor and a former ostomate. I had a partial colectomy at age sixteen in 1993 resulting from a cancerous tumor attached to the rectum. I was given a colostomy, for which I had never heard of before I woke up with one! Nine-reconstructive surgeries later, I received a takedown (reversal of colostomy) in 1997. Now, three lives later I am doctoral student at the University of Oklahoma in the Department of Sociology. My primary research area is Medical Sociology.

I am excited to share with you some preliminary results of a very important study on the lives of ostomates. I began this research project in the summer of 2017 called Peoples’ Experiences With Pouches (1.) (P.E.W.P.) Study. I am interested in the difficulties ostomates face in their everyday lives, as well as the level of supportive care they receive in current medical practice. Long-term goals include improving hospital processes and nurse training with respect to ostomy care and instruction.

Background: An important component of our healthcare system is when patients and providers meet and interact together. During this interaction, patients are able to explain their ailments and tell their story, and providers are able to provide care, instruction, and diagnoses. There are positive and negative outcomes for patients based on this interaction, such as patients feeling heard, respected and cared for, but also there can be patient dissatisfaction, lack of trust, and misdiagnoses. Effective communication from providers is not only critical for all patients, but possibly more so for patients who receive a life-changing surgery, such as an ostomy.

The communication from providers when ostomates first receive their appliance is critical. Provider communication not only needs to be effective for ostomates’ ability to go home and take care of their appliance, but also it needs to be efficient given the short turnaround time in release from the hospital. As such, in my study, I examine provider communication and information when ostomates first receive their appliance.

Study Background and Results: Currently, there are 391 ostomates from the U.S. and abroad included in the study. 89% reside in the U.S. with 11% residing outside of the U.S. (predominantly from the United Kingdom and Canada).

The research questions that I have addressed are based on ostomates’ initial experiences at the hospital when they first receive their ostomy. The research question that I will address in this post is, “Do ostomates receive adequate information and communication from providers while at the hospital?” The answer to this question is “no.” I found that almost half (49%) of the ostomates felt that they received inadequate information and communication from their provider at the hospital. Below are the areas of provider care that ostomates reported that they either did not receive or an inadequacy in care that they experienced:

  1. Attitude. The provider said something that hurt the patient’s feelings or acted in a way that dissatisfied the patient, such as the provider was arrogant or rude.
  2. Ostomy Nurse. The patient wanted to see an ostomy-specific nurse sooner than they did or have follow-up appointments with an ostomy nurse but did not get to.
  3. Providers Lacked Knowledge. Patients felt that providers were not educated enough about ostomy care or were lacking in their knowledge on ostomies.
  4. Products. Patients were not told that there were other products on the market that may work better for their type of stoma or situation.
  5. Preoperative Information. Patients did not receive pre-op information or wanted more preparation before surgery.
  6. Fixing Issues. Patients were not told how to fix issues that arose once at home.
  7. Supervise Pouch Change. Patient wanted to be supervised on how to change the pouch or more practice with changing it with an ostomy nurse or more practice changing it, in general, before going home but did not get to.
  8. Wrong Information. Patients were told the wrong information from providers.
  9. Missing Information. Patients were not told all of the information that they needed or wanted on how to care for their ostomy or other options available.
  10. Lacked Support Information. Patient wanted to be told about ostomy support groups or links to support information or meet with a current ostomate, but did not receive this.
  11. Lacked Emotional Support. Patient did not receive any emotional support from their provider and they wanted to.
  12. Questions. Patients had questions that were not answered at the hospital, or they wanted to call to ask questions.
  13. Hurried/Dismissed. Patients felt like the nurse was hurried, or the patient did not receive overall basic care, making them feel as if they were dismissed.

A majority of ostomates felt that they did not receive all of the information that they wanted or needed, with lacking product information as the second highest category for inadequacy.

Additionally, I examined whether provider communication and information were better or worse for ostomates who received their ostomy years ago versus more recently. The years of ostomy surgery ranged from having had surgery in 1953 to 2017. I found that the further back in years the ostomate had their surgery, the more likely they were to report adequate information and communication. This finding leaves us with additional questions, such as whether the quality of hospital provider care has decreased over time? What is driving this decrease in adequate information and communication for ostomates? I plan on determining the answers to these questions in future studies.

Closing Remarks: The main takeaway is that there is much work to be done with regard to ostomy care when people first receive their pouch. We hope our study (and future studies on this topic) will help in this endeavor. Finally, I encourage all of you to be active participants in your medical encounters when you meet with providers. It is important to ask questions and have an open dialog with your provider. The UOAA offers vast resources for new and seasoned ostomates. In particular, the UOAA has a “patient bill of rights” so that ostomates have the tools they need to advocate for their care. Please visit https://www.ostomy.org/bill-of-rights/ to see this great resource. You are welcome to reach out to me if you have any questions

1. Miller, Leslie Riggle and B. Mitchell Peck. 2018. Peoples’ Experiences With Pouches (P.E.W.P.) Study: Examining Whether Ostomates Receive Adequate Information from Hospital Providers. Presented at the Oklahoma Sociological Association Annual Meeting, Norman, Oklahoma, November 2017

Leslie Riggle Miller, M.A. is a former ostomate and a doctoral student at the University of Oklahoma in the Department of Sociology. 

By Jeanine Gleba, UOAA Advocacy Manager

The overall goal of the UOAA Patient Bill of Rights (PBOR) initiative is to ensure high quality of care for people who had or will have ostomy or continent diversion surgery. To accomplish this it’s important that patients and families actively participate in patient health care.

According to CMS an integral part of the U.S. Department of Health and Human Services’ (HHS) National Quality Strategy is the CMS Quality Improvement Organization (QIO) Program. It is one of the largest federal programs dedicated to improving health quality at the community level.

Under the QIO program there are two Beneficiary and Family Centered Care-QIOs (BFCC-QIOs) who help Medicare beneficiaries and their families exercise their right to high-quality healthcare. The two BFCC-QIOs are KEPRO and Livanta and they serve all fifty states. BFCC-QIO services are free-of-charge to Medicare beneficiaries.

Depending on where you live (Locate your BFCC-QIO) they are available to help Medicare beneficiaries and their families or caregivers with questions or concerns such as:

• Am I ready to be discharged from the hospital?
• Should I be receiving needed skilled services such as physical therapy, occupational therapy, from a home health agency, skilled nursing facility, or comprehensive outpatient rehabilitation facility? (Care from a certified ostomy nurse is a skilled service.)
• I’m concerned about the quality of care I received from my hospital, doctor, nurse or others.
Examples of quality of care concerns that pertain to our PBOR include but are not limited to:
• Experiencing a change in condition that was not treated (such as skin infection around stoma)
• Receiving inadequate discharge instructions (such as inadequate individual instruction in ostomy care, including the demonstration of emptying and changing pouch or no instruction on how to order ostomy supplies when you leave the hospital)

*Why should Medicare Beneficiaries contact their BFCC-QIO with concerns?

First, BFCC-QIOs can help when you have a concern about the quality of the medical care you are receiving from a healthcare facility (e.g. hospital, nursing home, or home health agency) or professional. You can also file a formal Medicare complaint through your BFCC-QIO.

Furthermore, according to CMS, when Medicare beneficiaries share their concerns with their BFCC-QIO, they help identify how the health care system can better meet the needs of other patients. Beneficiary experiences, both good and bad, give the QIO Program the perspective to identify opportunities for improvement, develop solutions that address the real needs of patients, and inspire action by health professionals. This is what we are working towards achieving with our PBOR initiative. This is a resource to help the UOAA community make this happen.

Last, Medicare beneficiaries have the right to file an appeal through their BFCC-QIO, if they disagree with a health care provider’s decision to discharge them from the hospital or discontinue services, or when they have a concern about the quality of the medical care they received from a health care professional or facility.

*When and who should Medicare Beneficiaries contact?

A Medicare beneficiary can call 1-800-MEDICARE or your Local State Health Insurance Assistance Program (SHIP) if he or she:

• Has general questions about Medicare coverage;
• Needs clarification on how to enroll in Medicare;
• Wishes to discuss billing issues.

A beneficiary can contact their BFCC-QIO if he or she:

• Needs to discuss the quality of care received;
• Wants to file a formal quality of care complaint; or
• Needs help to understand his or her Medicare rights.

While BFCC-QIOs are the primary point of contact for Medicare beneficiaries and their families, when necessary, quality of care complaints can also still be made by calling 1-800-MEDICARE.

For those interested in learning more about what to do if you have a concern about the care you received while on Medicare, please refer to this FAQs page produced by CMS.

Be involved in your healthcare and if you are a Medicare beneficiary, take advantage of this resource to self-advocate and ensure a better outcome for yourself.

*Source qioprogram.org

Taking a stand for better ostomy healthcare

By Jeanine Gleba, UOAA Advocacy Manager

United Ostomy Associations of America (UOAA) is an organization that empowers people to get the care they deserve to live life to the fullest. The poor quality of ostomy care received by some in our community limits those lifestyle choices. For people living in the United States with an ostomy or continent diversion healthcare delivery is unequal. A person with an ostomy should be treated as seriously as someone living with diabetes. At hospital discharge, it would not be safe or acceptable for an insulin-dependent diabetic to be incapable of giving themselves an injection, self-managing their diet and blood sugars, and obtaining their supplies. It is not safe or acceptable for anyone living with an ostomy to be discharged without knowing how to prevent dehydration and not have access to care and supplies to live a healthy active life. We can’t let the words “quality healthcare” become meaningless buzzwords for those facing this life-saving/ life-changing surgery. The time has come to take a stand.

To get the ball rolling UOAA recently revised the Ostomy and Continent Diversion Patient Bill of Rights (PBOR), which has become the foundation to stand on, to SPEAK UP. The PBOR states the details of the care people with an ostomy should expect to receive initially and during their lifetime. It calls for healthcare professionals who provide care to people with ostomies, to be educated in the specialty, and to observe the standards of care. It is a guide for patients and families to be active partners in their care, to know what is reasonable to expect so they can collaborate in their care and get the outcomes they deserve.

UOAA has taken the lead to generate this change by promoting the new PBOR and its use. We are excited by the response and support we are receiving and know we can continue to make big strides.

So the little PBOR “snowball” rolling down the hill is gaining momentum and is poised to impact the barriers for people who live with ostomies and continent diversions in America. Be a part of the change, download the PBOR and the Top Ten Ways to use it. Step up and spread the word.