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The Ostomy Files: Quality of Life: Healing the Brain and The Body
Self-esteem is potent concern for anyone, and emotion cannot be denied. - Richard Cohen, writer, The New York Times, on his feelings about his temporary ileostomy, April 2001
Quality of life. Three words that carry enormous weight in any person's life, but especially in a life lived with a stoma. These three words are lobbed about in nearly every professional discussion of outcomes or cost of ostomies, as well as in the process of developing clinical tools and standards. But do we really know what they mean and are we really paying attention to and measuring quality of life (QOL)? Most likely, relativity and perspective authentically define quality of life.
Christine Moffatt, RN, PhD, Center for Research and Implementation of Clinical Practice, Thames Valley University, London, England, gave two intriguing presentations at the recent Symposium on Advanced Wound Care in Baltimore, Maryland, regarding her research into QOL among patients with chronic wounds1 and how healthcare professionals cope with "difficult" patients with nonhealing wounds.2
Many of the same QOL issues revealed in this research are equally applicable to ostomy patients. One patient referred to living with an ostomy as, "The Mental Battle of Living with an Ostomy." In today's environment of managed care, shrinking healthcare dollars, standardized guidelines, and inconsistencies among referring institutions, an ostomy patient's QOL is easily jeopardized. As Black cautions, "however far the science of medicine and surgery advances, the art of medicine will remain. The art of first identifying the patient's problem..."3 One ostomy patient writes, "God bless... every other doctor who is smart enough to know that healing takes place in the brain every bit as much as it does in the body."4
Technological advances begun in the 1950s were aimed at improving QOL for a person with an ostomy. Previously, neither the time, the funds, nor the inclination were available to conduct prolonged clinical trials and studies. Immediate solutions for urgent and fundamental problems were needed.5 At the time, the emphasis was more technical - how to perfect surgical techniques, how to improve ostomy pouching systems so they were more discreet and odor-proof, and how to treat and prevent peristomal skin breakdown.
Over the years, technological advances in surgical procedures, improvement in ostomy products, and emphasis on evidence-based practice and patient outcomes has renewed our interest in understanding the real-life impact of living with an ostomy. What happens in the patient's life after surgery, post treatment, and after an "adequate" pouching system has been selected? Is the pouching system really adequate if it is simply leakproof (ie, does "adequate" simply imply that a pouching system does not leak)? Can something as basic as a pouching system influence a patient's QOL? What impact does loss of sexual function, social isolation, depression, pain, and dietary restrictions have on an ostomy patient's life?
In surveys and discussions with healthcare professionals, patients continue to complain that sexual information and counseling are among the most overlooked aspects of ostomy rehabilitation.6 One says, "As for sense of my own sexuality, forget it. I instantly became asexual."7 What impact, if any, does a pouching system have on a person's feelings about body image, sex, being desirable, and sexuality in general? What role does a pouching system play in other kinds of interpersonal relationships? Patients often have little choice about what ostomy pouching system they will use for one of the most personal and private bodily functions. American clinicians often adhere to 50-year old tenets - for example, that ileostomy patients should wear drainable pouches. This continues despite the fact that the U.S. appears to be one of the few modern "first-world" countries where the daily use (versus occasional use) of closed-end pouches for both ileostomy and colostomy is not the accepted norm.8
New ostomy patients often become dietary cripples based upon erroneous information they receive about their newly "restricted diets" - they are afraid to venture out for a meal in a restaurant or accept a friend's dinner invitation. How does it feel to know that you are trying your hardest to do what your doctors and nurses tell you, but your pouching system continues to leak despite frequent office visits and follow-up? How do you deal with healthcare professionals whom you know have labeled you difficult and whose questioning leads you to think they don't believe you are willing or able to follow their professional instructions? What is the effect on QOL when you know your healthcare professional runs out of ideas and options to help you solve your problem?
If the objective of ostomy care is to optimize the QOL for ostomy patients, we must investigate just what that means for patients on a quotidian basis. Just as beauty is thought to be in the eye of the beholder, so may understanding the quality of life be found only by taking the time to ask the individual. Perhaps this is truly the art of medicine - the art of identifying the patient's problem and using the science and technology available to us to help solve it.
The Ostomy Files is made possible through the support of ConvaTec, A Bristol-Myers Squibb Company, Princeton, NJ.
1. Moffatt C. Practice Issues: Understanding Patient Rights - Quality of Life Among Patients with Chronic Wounds. Presentation at: Fifteenth Annual Symposium on Advanced Wound Care and Medical Research Forum on Wound Repair. Baltimore, Maryland. April 29, 2002.
2. Moffatt CJ. Professional dilemmas of non-healing. Oral Abstract Presentation at: Fifteenth Annual Symposium on Advanced Wound Care and Medical Research Forum on Wound Repair; April 29, 2002; Baltimore, Md.
3. Black D. The limitations of evidence. J R Coll Physicians Lond. 1998;32(1):23-26.
4. Skilken PS. Never Apologize, Always Explain. New York, NY: Everest House; 1982.
5. Turnbull GB, Erwin-Toth P. Ostomy care: foundation for teaching and practice. Ostomy/Wound Management. 1999;45(suppl 1A):23S-30S.
6. Turnbull GB. Sexual counseling: the forgotten aspect of ostomy rehabilitation. J Sex Ed and Therapy. 2001;26(3):189-195.
7. Cohen RM. The trouble with "the bag" is in the head. New York Times. April 10, 2001.
8. Quality of Life and the Ostomy Patient: the Consensus of Experts. New York, NY: ConvaTec, a Bristol-Myers Squibb Company. December 2, 1995. On file: ConvaTec.
