Barriers on Diagnosis and Treatment
Impact of Fecal and Urinary Incontinence on Health Consumers – Barriers on Diagnosis and Treatment – A Patient Perspective
By: Nancy J. Norton, President, International Foundation for Functional Gastrointestinal Disorders (IFFGD). Text of presentation at the National Institutes of Health (NIH) State-of-the-Science Conference on Prevention of Fecal and Urinary Incontinence in Adults held on December 10-12, 2007 in Bethesda, MD.
The impact of living life as a person with incontinence carries a burden, whether it is urinary incontinence, fecal incontinence, or both. The nature of the condition, one that few feel comfortable even mentioning, presents unusual challenges. What are these challenges, what needs to change, what are the barriers to change, and how can we break them down?
Challenges Patients Face
Incontinence is a chronic condition with often unpredictable symptom episodes. Uncertainty, it has been said, is the worst illness.1 The effects of persistent uncertainty surrounding onset of an episode of incontinence can be disabling. There is no socially acceptable way to talk about toilet habits, or bodily waste. Thus a social stigma is attached to the symptoms of incontinence, and by attribution to the sufferer.
For the patient who seeks treatment, effective therapies are often elusive. Moreover, symptoms of chronic illness place demands on families as well as patients. They impair functioning while placing continual demands on the individual patient.2
The impact of having a chronic illness may be subjective and it may change within each individual over time. A variety of external and internal factors intersect, influencing whether or not a person will seek medical help, and their ability to adapt to their illness demands and benefit from treatment. This personal impact is influenced by cultural, social, and psychological factors along with concepts of self-image, self-worth, and health expectations.3
It has only been in the past twenty years that we have gained a better understanding of the impact of urinary incontinence on the psychosocial well-being of affected individuals. The emergence of new tools for assessment of quality of life with urinary incontinence has changed the way this condition is viewed and managed.3 The same assessment needs to be made for fecal incontinence.
Neither urinary incontinence nor fecal incontinence is a single disease. Rather they are symptoms of many different conditions. Patients come to it from many perspectives with different expectations.
Until recently, the focus for establishing a diagnosis and assessing a therapeutic outcome of urinary incontinence has been on the objective measurement of urinary loss. Fecal incontinence has been measured in similar ways looking at frequency, amount, composition, and the circumstances surrounding fecal leakage.4 However, objective measurements, such as weight of urinary incontinence pads or frequency of fecal incontinence episodes, are not always practical nor do they describe the true impact of incontinence on the patient.3 As better tools emerge, we will capture a more comprehensive and truer picture of the impact of incontinence and burden it represents to the individual.
Taboos and Stigmatization
The person with incontinence is faced with a persistent challenge of overcoming social and cultural taboos. Socially, it is expected that we acquire bladder and bowel control skills during childhood. We are taught cultural norms about when and where to eliminate and dispose of bodily wastes. We react generally with disgust to the presence of bodily waste, particularly feces. Possibly this is a basic human emotion to protect us from disease. In any event, the loss of urine or feces, particularly as an adult, carries significant societal taboos.5
When bladder or bowel control is lost, especially in public, overwhelming feelings of shame and embarrassment often result. This loss of control over elimination and public humiliation represents major threats to self esteem.5
Individuals who suffer incontinence will go to great lengths to keep their condition a secret if they are able. Revelation of this secret can have a profound affect on their well-being. They may be subjected to gossip, hostility, and other forms of social exclusion. The elderly are frequently relocated to other living arrangements and are at risk for institutionalization.6 Anal incontinence may be one of the most common reasons for social isolation and institutionalization of the elderly. Incontinent patients have been reported to be less likely to marry and hold a normal job. In the workplace, in addition to lost productivity, individuals face stigmatization and reduced self esteem.7
With incontinence the illness experience is not limited to the symptoms. It is accompanied by what is called a “second illness” – the reactions of the social environment, and the stigma associated with the disorder. Stigmatization is a dimension of suffering added to the illness experience, and has been found to lead to social isolation, limited life chances, and delayed help-seeking.8
Barriers to Seeking Help
Almost every article published on incontinence makes some kind of reference to the strong, if not devastating, impact of having the disorder. Yet 50% to 70% of incontinent persons do not seek help for their condition.3,4,5,9,10
Barriers for seeking help have been investigated for urinary incontinence. The most common theme that emerges is a lack of knowledge of the condition and of available treatments. Urinary symptoms are commonly considered a normal part of ageing or childbirth, or people feel that these types of symptoms are inappropriate for medical intervention. Older people are more likely to accept their symptoms and feel that they don’t want to bother their physician. Patients do not always communicate their concerns about urinary symptoms to their general practitioner, either because of embarrassment or misconceptions of what constitutes a medical problem.9,11
Physicians Don’t Ask/Patients Don’t Tell – A study of primary care physicians found that the majority of these physicians asked only 25% or fewer of their patients about incontinence.3 But significantly, while up to 70% of incontinent patients did not voluntarily report the problem, more than 75% did report the condition when asked about it by their physician.3
Because patients are often reluctant to introduce the topic, physicians need to take the lead. They need to ask their patients about bowel and bladder function, about and the patient’s ability to control it, and whether it’s resulting in changes in daily routine.
Incontinence gets Lost in the Translation – Patients and practitioners do not always communicate effectively; they often refer to things differently attaching their own interpretations to the reported symptoms. Patients, with no real understanding of incontinence, may talk around the condition. For example a patient may report frequent diarrhea or gas. Another may report frequent urination. This is where incontinence may get lost in the translation. A simple question or two – "do you notice leakage, or soiling of clothing; do you change plans because of bowel or bladder function" – may be all that’s needed to reveal the presence of incontinence.
Patients also have a tendency to reinterpret the impact of symptoms during the consultation.9 They may feel uncomfortable and unable to find the words to describe how the incontinence is controlling their life. They may make light of it or may not know where to begin the discussion.
Patients don’t always take into consideration that the doctor can only make assessments of the severity of symptoms based on the information the patient shares with them.
One study showed that attitudes of men and women toward help seeking for urinary incontinence are somewhat similar, although men were more aware of prostate problems and more likely to seek reassurance of no serious underlying pathology. Both men and women were embarrassed at reporting symptoms, unaware of treatment options, fearful of surgical interventions, and just as likely to consider symptoms a normal part of ageing.9
The impact of symptoms on quality of life appears to be the main trigger for seeking help for urinary incontinence. Few studies have been done to evaluate this in fecal incontinence.7,9
Many people who are incontinent begin a process of adaptation and accommodation of symptoms. It may be a gradual process over time which gives the individual the illusion of coping. They may begin by limiting fluid or food intake, with the idea that if nothing goes in, then nothing will come out. When leaving the house, they may carry with them absorbent products, a change of clothing, and supplies for cleaning themselves. Their participation in social and work activities may become less and less.
Their world becomes increasingly smaller day by day. It has been described as having a tether to the home or to an environment that feels controllable. By seldom leaving home in order to be in close proximity to the bathroom and thereby to avoid an episode of incontinence gives one the illusion of no longer being a person who is incontinent. The withdrawal may be so gradual that it’s barely noticeable; an adaptation that feels normal until one day there comes a recognition of how isolating or disabling it has become.
Severity of symptoms may be a driving factor that brings people to the physician because they are no longer able to cope with the symptoms. But incontinent people have a need to perceive the benefits of treatment in order to overcome the emotional costs they will expend in revealing their incontinence to a physician.9 For some patients there is a fear that they won’t be able to even get to the doctors’ office for an appointment without being incontinent. Others have sought help in the past but were met with a lack of interest, or they may have tried various treatments with no success and are therefore reluctant to pursue another course of treatment.
Breaking Down Barriers
How can we break down these barriers in order to reach patients and improve the standards of prevention and care? We can begin by speaking up, by educating, by affirming, by reaching out openly to those who are at risk or who are affected. The magnitude of the prevalence and burden of incontinence has been masked in this country by silence for far too long.
The work of the National Association for Continence, the Simon Foundation, and the International Foundation for Functional Gastrointestinal Disorders (IFFGD) has helped to break some of the silence.
Recommendations have been made by a working group for the International Continence Society, published in 2005 regarding population based prevention.12 They have suggested that “primary prevention should be the goal of all healthcare professionals as it means taking an active part in preventing the initial development of incontinence.” They further comment that “all preventive measures require a high level of community awareness, public education and health professional education.” While making these recommendations for more education and awareness there is a lack of evidence as to how that translates into behavioral change and what triggers health seeking behavior. I would like to point out that behavioral change needs to occur within the provider community as well as on the public side.
Health care providers need to reflect on how they interact and communicate with incontinent patients. I came across an article that was focused on care giving in a U.S. nursing home, in which incontinence was referred to as “pollution” and caring for incontinent patients is considered the “dirty work.”13 I found the following passages to be quite stunning and to illustrate how stigma is present within the culture that patients rely on for care.
In American Nursing Homes, it is the responsibility of nursing assistants to clear away pollution, to bring order to the disorderliness that arises when excreta is out of place.
Unable to avoid pollution, nursing assistants are instead compelled to live with it. They do so, however, uneasily. It is, after all, not an easy task to come to terms with revulsion.13
There is the unfortunate potential for the symptom of incontinence to serve as a metaphor for the personality of the individual who has it, a metaphor for an impaired identity. The patient is seen as “an incontinent,” one who breaks accepted boundaries. No patient should have to bear the burden of that metaphor in addition to the actual illness or disorder.
Fecal continence has been written about in the following way “the storage of stool is utterly necessary to preserve the veneer of civilization.”14 Put another way, those who are incontinent of stool or urine live a life that is perceived to threaten that veneer.
Prevention may lie in developing new and different standards of care for patients. For example, pregnancy, although not the exclusive cause of fecal incontinence, is certainly a prominent association.15 It is believed that fecal incontinence may be prevented if obstetric, gynecological and colorectal professionals are more aware of how interventions may cause or create injury resulting in fecal incontinence.16
Risk factors for both urinary incontinence and fecal incontinence range from traumatic injury to disease with a host of other contributing factors that influence the onset. In nursing homes incontinence could be improved with more toileting opportunities for residents. It is an obvious solution but one that carries economic considerations and constraints.17
This conference confronts us with a challenge that few medical disorders or diseases are faced with in today’s society. We can speak about almost every disease without fear that shame or embarrassment will be attached to the disorder or the sufferer. That is not so with incontinence or those who suffer its affects. Historically, there have been few resources devoted to education, awareness, and research of fecal incontinence. Over the past decade, to the credit of many, there has been more visibility and education around urinary incontinence. Yet a great deal more remains to be done to raise the level of understanding.
Living with Incontinence
It is difficult for people who do not have the disorder to appreciate the impact that incontinence has. As I close, I would like to share with you one individual’s words describing life as a person with fecal incontinence.
You feel so alone. You don’t dare tell most people. They may avoid you or think you are ‘sick.’ They may say, ‘Go get help.’ You have tried to get help. No one understands unless they have suffered with this.
Your life revolves around this. It changes who you are. The day begins with preparation to deal with it and then it stays in your consciousness; the burden is exhausting.
Alone, sometimes, you just give in and let it run its course. You try to ignore it and go on with your life. You can for a while – until it gets worse and then you just want to scream.
Sometimes you feel you have beaten it. Life returns to normal. Most of the time you just try to control it. Sometimes successfully until the painful spasms, in muscles you have squeezed tight too often, make your toes and fingers curl.
You’re with people when you feel it coming. White knuckled, praying inside; please don’t let this escape. You squeeze harder, barely breathing. You estimate the distance to the bathroom, how many people you need to walk past and who they are. You exit abruptly trying to maintain control. Sometimes you just freeze. The focus of your life becomes trying not to lose bowel control.
You know the devastation of losing control, the feelings of personal loss – of dignity, or your self-image – of being a desirable human being, of sexuality. The shame feels unbearable. You try to forget that it happened . . . then it happens again.
This time it happens with no warning, without giving you a chance to even try to control it. You don’t feel it or know it is there until you see it on your clothes. You are shocked, overwhelmed, and then numb.
You go and see another specialist, endure distressing tests and they talk about wearing a diaper. You struggle against the indignity of it all. You walk through a door that says ‘Incontinence Department,’ announcing to the world your uttermost private problem.
You wonder how someone else deals with this when they don’t have the family or friends that you do. You begin to think about yourself aging, and become very anxious about what life will be like when you are old, if it is like this now.
You close your eyes and drift into restless sleep. Then, another day dawns and you prepare to begin again.18
Our efforts at this conference over the next few days point to a willingness to improve the state of the science and of everyday living with incontinence. I believe there is more that we can do on all fronts to not only aid in preventing incontinence but to also improve the awareness around it, to make it easier for people to seek help and find solutions to managing the condition if not resolving it. Thus may people with incontinence awaken to not just another day, but to a new day. Thank you.