Intermittent self-catheterisation (ISC) isn't painful, right? It can be uncomfortable and often a nuisance if you have to do it, but it doesn't hurt.
In the literature, several quality-of-life studies highlight that the commencement of ISC impacts a patient's daily life in a positive way, when compared with the problems they may have experienced before ISC (Cobussen-Boekhorst et al, 2016). Markiewicz et al (2020) surveyed 393 patients, undertaking regular ISC and found depression, anxiety and feeling bad about oneself are not the lived experience of ISC patients. Furthermore, it was reported that preparation and anxiety pre-procedure were more difficult to manage than the execution of ISC itself (Cobussen-Boekhorst et al, 2016), clearly demonstrating the role of education and holistic support before initiating a regimen of ISC.
But what if patients don't find the procedure itself easy, or liberating? In fact, what if they find it a distressing experience? How do we coach these patients with sensitivity and diplomacy, while maintaining concordance with ISC as a daily regimen for the wellbeing of their urological condition, and their mental and physical health?
Voiding dysfunction
Voiding dysfunction is relatively uncommon in young women (Mevcha and Drake, 2010) and can often be an incidental finding when investigating another medical condition. The cause of voiding dysfunction can be multifactorial—caused by an infection, as a consequence of pharmacological agents such as opioids, neurological in origin, an anatomical obstruction such as bladder outlet obstruction (BOO), myopathic and/or because of functional disorders (Mevcha and Drake, 2010).
A typical description of symptoms related to voiding dysfunction include, but are not limited to, valsalva voiding (straining), poor urinary stream with prolonged void, and, occasionally, recurrent urinary tract infections. It has been known that a patient can sometimes demonstrate post-void residual volumes in excess of 1 litre in the absence of any pain or discomfort (Panicker et al, 2018).
When women present with these urological symptoms they should be referred for diagnostics after routine history and examination. A comprehensive assessment would include keeping a bladder diary, recording serial flow rates, post-void residual scans, mid-stream specimen of urine (MSU) tests, a kidney, ureter and bladder ultrasound (KUB USS) video urodynamics, including a urethral pressure profile, electromyography (EMG) and MRI.
It is recognised that this type of comprehensive diagnostic investigation is not available at all urological units and it is this lack of well-established diagnostics that contributes to underdiagnosis in women, and therefore results in a diagnostic and treatment delay (Malde et al, 2019). In fact, on average, it is reported that young women have often been seen by three hospital consultants before a diagnosis for their symptoms is made (Kavia et al, 2006).
A patient with voiding dysfunction is diagnosed with high tone non-relaxing sphincter (HTNRS), also called Fowler's syndrome, when they have a high urethral pressure profile (UPP) and/or, abnormal urethral sphincter electromyography (EMG) (recording complex repetitive discharges without deceleration) (Panicker et al, 2018). In simple terms, this means the patient's urethral sphincter isn't relaxing when it should be, to allow a coordinated void to take place as it should physiologically. When a void is attempted, the patient typically reports difficulty initiating a flow, straining or ‘pushing’ ‘bearing down’ to generate a stream of urine, and then sometimes experience a feeling of incomplete emptying, which can necessitate a return to the toilet soon after the initial attempt. HTNRS/Fowler's syndrome should always be considered in women presenting with urinary retention where the cause for retention is uncertain (Panicker et al, 2018).
Treatments
There are two treatment options for patients diagnosed with HTNRS/Fowler's syndrome: sacral neuromodulation and ISC. Sacral neuromodulation offers more than 70% of women restoration of spontaneous voiding, (Datta, 2008). However, it is only available at some UK tertiary referral centres with a high financial tariff. In the most part ISC as a means of draining the bladder via an ‘in and out’ catheter is mandated and the patient is encouraged to implement a regimen of ISC four to six times per day to mimic a normal voiding pattern.
Patient experience
The experience of ISC described earlier is often echoed in the clinic room when listening to patients with HTNRS/Fowler's syndrome. Some patients report pain inserting the catheter, difficulty navigating the urethral sphincter, and then ‘gripping’ when attempting to remove the catheter. Most report some form of difficulty, which results in a desire not to do the act and, in some, complete abstinence.
There are several practical things to consider. Firstly, does the patient need to undertake ISC as often as five times a day? Can they manage with less frequency based on their natural void and residual volume? Although a ‘gold standard’ may be desirable, Naish (2003) called for acceptance of reality in practice, and negotiating a lesser regimen for increased concordance is acceptable, assuming the upper tracts are not compromised (Naish, 2003). Can the choice of catheter be changed with several samples offered to try to see if one may be more suitable to the patient? Anecdotally, a more rigid catheter navigates a HTNRS better than a soft catheter, but all patients are different and a bespoke service should be offered. The use of additional lubricants and local anaesthetics should be considered and the environment adjusted to provide a relaxed and stress-free moment for the procedure, which is often easier said than done. A warm bath is commonly cited as easing ISC. In the event of these practical measures not being tolerated, long-term drainage by suprapubic catheter may be the only option, and one which carries its own morbidity (Ramm and Kane, 2011).
All the practical measures must be accompanied by a patient and open-minded approach. Trust is only formed when mutual respect exists and this is forged when empathy is genuine. Barack Obama described empathy as ‘Learning to stand in somebody else's shoes, to see through their eyes … it's up to you to make that happen’ (Obama, 2009). And it is up to us as professionals to seek to legitimise a patient's lived experience and although we cannot always make things better, we can ease suffering, if only by empathising and being the patient's advocate. This can be challenging when one's own preconceived idea about ISC exists, and hence therein lies the complexities of caring for those with this poorly understood condition.
It can also be a challenge when, historically, functional disorders have been seen as not genuine but ‘all in the mind’ (Panicker et al, 2018). This negative, factually incorrect label further carries a negative association for patients with the inference of their problem being ‘all in their head’ (Edwards et al, 2012). Further research is needed and more understanding warranted. This can only happen when we give patients with this condition a voice, or we work to give them a platform so they can explain the subjective experience of HTNRS/Fowler's syndrome in real terms. For now, listening and providing empathy go a long way in establishing and maintaining good nurse-patient relations.