This article examines people’s continence needs at the end of life
Harris, A. (2009) Providing urinary continence care to adults at the end of life. Nursing Times; 105; 29.
This article focuses on the urinary continence needs of adults at the end of their life. It considers the possible causes of urinary continence problems and outlines some of the management options.
Keywords: End of life, Palliative care, Urinary incontinence
- This article has been double-blind peer reviewed
Alison Harris, MSc, PGCert, BSc, DipDN, LPE, RN, is senior lecturer, Middlesex University, London.
- Continence care is usually aimed at promoting continence but the approach may change in end-of-life care.
- At the end of life, continence care should be based on patient wishes and preferences.
- Care should be directed at maintaining comfort and dignity and relieving symptoms
- Little is known about the continence needs of people as they near the end of their life.
- A collaborative approach between continence and palliative care health professionals would help to develop this important aspect of end-of-life care.
As people approach the end of their life, their functional dependency increases and their ability to care for themselves needs to be reappraised.
Many people receiving palliative care are continent (Warnock et al, 2008); however, as individuals near the end of their lives they may require help in managing their continence needs.
While there has been some focus on the problem of constipation and bowel care in palliative care (Kyle, 2007; Thomas et al, 2006), little is known about the urinary continence needs of people as they approach the end of their life.
Continence difficulties may be:
- Caused by an underlying condition;
- Triggered by medication;
- Associated with reduced mobility or cognitive decline;
- Present before the onset of the disease.
Maintenance of continence may be at risk because of inadequate care, incomplete and uninformed assessment, a lack of an interprofessional approach or poor communication.
Urinary incontinence is the involuntary leakage of urine (Abrams et al, 2002). Studies on the general population have demonstrated that urinary incontinence is known to have an impact on a person’s quality of life (Monz, 2007; Hunskaar and Vinsnes, 1991) and to be linked with anxiety and depression (Coyne et al, 2008). What is less certain is how it affects those nearing the end of their life.
An audit carried out by the Royal College of Physicians found widespread inadequacies in diagnosis and management of continence care across a variety of care settings (Wagg et al, 2008). The report highlighted poor assessment skills and a failure to provide integrated continence services as recommended in national guidelines (Department of Health, 2001; DH, 2000).
If these findings are applied to those requiring end-of-life continence care, then some concerns may need to be raised about current practices and services.
It has been identified that nurses do not feel they give adequate bladder (and bowel) care to terminally ill patients (Warnock et al, 2008).
The NHS Cancer Plan (DH, 2000a) supported a large-scale educational programme in palliative care for community nurses across England and, more recently, The End of Life Care Strategy (DH, 2008) has called for end-of-life care to be embedded in the curriculums of all health and social care staff.
Urinary incontinence at the end of life
The bladder has a complicated nerve supply and bladder dysfunction is frequently present in patients with neurological problems.
Any lesion that impinges on the neural control of the lower urinary tract will affect bladder function, and both voiding and storage problems may occur. Patients presenting with spinal cord compression will be expected to have bladder storage or emptying dysfunction or both (Drudge-Coates and Rajbabu, 2008). Inflammation of the cerebral cortex may lead to urgency and urge incontinence.
Metastatic disease of the spine or pelvis, gynaecological cancers, bladder neoplasms and cerebral haemorrhage are just some of the conditions that may lead to bladder dysfunction.
Incontinence has been found to be a predictor of poor prognosis following a stroke (Pettersen et al, 2007). A stroke may impair inhibition of the micturition reflex and symptoms of frequency, urgency, urge incontinence and nocturnal incontinence may occur. Stroke has also been found to lead to neurogenic detrusor underactivity (Gelber et al, 1993), which in turn leads to retention with day and night time frequency, urgency and eventually infection and incontinence.
Many people who survive a stroke report that urinary incontinence causes distress and discomfort (Brittain et al, 2000). It is reasonable to assume that those for whom a stroke precipitates the end of their life will experience similar distress and discomfort.
Urinary incontinence is associated with cognitive impairment (Skelly and Flint, 1995).
Management of urinary incontinence presents immense challenges for carers and health professionals when cognitive decline occurs toward the end of life. Incontinence in the cognitively impaired is reported as a contributory factor in admission to long-term care (Help the Aged, 2008).
As a person gets close to the end of their life, families and health professionals often report a distressing phenomenon sometimes described as terminal restlessness. This has been attributed to physical, emotional or spiritual suffering (Head and Faul, 2005).
During the latter stages of a terminal condition a full bladder (or bowel) can cause agitation and restlessness. Recognising the trigger for agitation requires careful consideration. For example, an indwelling urinary catheter may help to relieve agitation for some patients while others may find a catheter distressing.
As the bladder ages, problems associated with incomplete emptying and bladder overactivity lead to urgency and urge incontinence (Yu et al, 1990).
Urgency has been independently associated with an increased risk of falls and fractures in older women (Brown et al, 2000). There is evidence that urinary incontinence is associated with a significant decline in the ability to carry out the basic activities of daily living, including bathing, dressing and feeding (Cho et al, 1998).
As the over 80s are the fastest-growing sector of the UK’s population (Office of National Statistics, 2008), healthcare staff can expect to care for more people approaching the end of their life with complex care needs, including urinary incontinence.
Assessment of urinary incontinence
The End of Life Care Strategy stipulates that all people approaching the end of their life will have their needs assessed (DH, 2008).
The assessment of continence needs can rest with any member of the healthcare team and the strategy promotes partnership in care planning with the patient, family and carers.
Urinary incontinence can be dehumanising and deeply degrading. Its assessment and symptomatic management should be as important as that of all other end-of-life symptoms. Often continence care is not assessed until problems occur and the result is a poorly considered and rushed plan of care that denies the patient any chance to express their wishes.
The patient’s underlying disease, pain and functional and cognitive status will be the starting point for the clinical assessment. An accurate assessment of the patient’s urinary symptoms, together with an understanding of the underlying disease and its complications, will prevent unnecessary interventions and reduce any potential suffering (see Table 1).
Studies have found that, within palliative care, the onset of urinary incontinence can be used to predict the likelihood of death (Abicht-Swensen and Debner, 1999; Nakanishi et al, 1999). Therefore, the assessment of functional decline that includes the re-evaluation of continence needs can support end-of-life decision-making.
Urinary tract infection
Urinary incontinence that presents at the end of life might be due to a treatable cause such as a urinary tract infection (UTI).
UTI is a likely complication at the end of life due to immobility, malnutrition and immunosuppression. Symptoms include lower back pain, dysuria, haematuria, offensively smelling urine and pyrexia. In frail, terminally ill people, a UTI may cause confusion and lead to falls. In immunosuppressed patients, a UTI might quickly develop into pyelonephritis or septicaemia and treatment with antibiotics may be indicated to reduce symptoms.
Many patients present with urinary incontinence secondary to opioid-induced constipation (Stevens, 2008). A full bowel will reduce bladder capacity and may cause outflow obstruction difficulties. The assessment of bowel function may help diagnose the cause of urinary incontinence while alleviating the discomfort associated with bowel distension, straining to defecate and incomplete defecation.
Radiotherapy can cause irritation of the bladder leading to urinary difficulties associated with inflammation and scarring (Campbell and Farrell, 1998). People who have undergone radiotherapy to the pelvic area may develop a small and less compliant bladder. They may experience pain, frequency, urgency and possibly incontinence, especially if they cannot reach the toilet in time.
End-of-life symptom control will often require a complex medication regimen. Some drugs will lead to or exacerbate continence difficulties.
Opioid analgesics, of which diamorphine is the most commonly used, may cause urinary retention and incontinence. Sedatives and anticonvulsants, such as midazolam, can lead to retention and incontinence. Hyoscine, which is used to reduce respiratory secretions and sedation, has antimuscarinic properties and may lead to urinary retention. Diuretics, such as furosemide, will exacerbate frequency and incontinence.
The management of the effects and side-effects is dependent on the patient’s condition and requires an interprofessional assessment of need.
Ethical issues arise in end-of-life care around interventions that might, for example, prevent or prolong suffering. Such issues might be part of the individual’s advance directive in their living will.
Living wills form part of the Mental Capacity Act (DH, 2005) and, while they are not legally binding, health professionals must consider them in any treatment decisions (DH, 2008). The maintenance of continence and treatment, such as the use of antibiotics to treat a UTI, may be influenced by an advanced directive.
Nurses are often involved in decisions about end of life as they are the professional with the most contact with the patient.
Adequate hydration may reduce bladder symptoms associated with dehydration, UTI or post-radiotherapy irritation. Fluid advice should be individualised and symptoms such as pain or nausea might need to be relieved before hydration can be addressed. In clinical decisions concerning the maintenance or withdrawal of hydration, bladder symptoms should be considered.
Continence management strategies may need to consider pain management in those with a terminal illness. At the end of life, incontinence pads may be the least invasive option so pads and bedpans can promote dignity and are appropriate. All-in-one body-worn incontinence pads may be easier to use than inserts worn inside pants.
Ensuring a person has a regular toilet or pad regimen will help to promote comfort and dignity. A commode near the bed or the use of a bedpan or urinal can mean that a person can remain continent until very close to the end of their life.
If the patient has a history of continence difficulties prior to their terminal illness, management may need to be reconsidered. For example, intermittent catheterisation may need to be replaced with an indwelling catheter.
Indwelling catheters are a suitable option in managing urinary incontinence, to improve skin care where incontinence could or has caused a problem or to reduce movement and suffering. The choice of catheter will be based on the estimated time it will be in place and any known allergies.
Catheter management at the end of life requires attention to comfort, infection prevention and dignity. There is some evidence that silicone catheters reduce inflammation and that basic hand hygiene, soap and water cleansing of the urethral meatus and vigorous maintenance of a closed system reduce the risk of infection (Pratt et al, 2007).
Skin care is part of continence management in the frail and immobile. Barrier creams, repositioning and constant re-evaluation are the cornerstone to preventing pressure ulcers and further discomfort.
The use of antimuscarinic drugs, such as oxybutynin, tolterodine or solifenacin, to treat the symptoms of frequency and urgency may not have a large part to play in end-of-life care. They can take up to 12 weeks to reach maximum efficacy (Van Kerrebroeck et al, 2001), have side-effects including a dry mouth and constipation, and can heighten agitation and lead to confusion. Their effect might be potentiated by concomitant therapies, for example tricyclic antidepressants, and the antifungals ketoconazole and itraconazole exacerbate the side-effects of antimuscarinics.
If bladder storage problems are experienced, an antimuscarinic may help relax the detrusor. This can be given as a single daily dose or, if available, as a transdermal skin patch containing oxybutynin if oral medication is not tolerated.
At the end of life, continence care should be based on the patient’s wishes and preferences. This consensual approach ensures that care is given in a mutual partnership of respect and trust.
While continence care to the general population is aimed at promoting continence, the perspective may change in end-of-life care. Care is more often aimed at maintaining comfort and dignity and relieving symptoms with minimal interference. A good knowledge of urinary dysfunction is essential to inform the assessment of patients’ needs.
Little is known about the continence needs of people as they near the end of their life and there is little evaluation of the approaches to managing their urinary continence needs. A collaborative approach between continence and palliative care health professionals would help to develop this important aspect of end-of-life care.
Abicht-Swensen, L.M., Debner, L.K. (1999) The Minimum Data Set 2.0: A functional assessment to predict mortality in nursing home residents. American Journal of Hospital and Palliative Care; 16: 3, 527-532.
Abrams, P. et al (2002) The standardization of terminology of lower urinary tract function: report from the standardization subcommittee of the international continence society. Neurourology and Urodynamics; 21: 167-178.
Brittain, K.R. et al (2000) Prevalence and impact of urinary symptoms among community-dwelling stroke survivors; Stroke: 31, 886-891.
Brown, J.S. et al (2000) Urinary incontinence: does it increase risk for falls and fractures? Journal of the American Geriatrics Society; 48: 7, 721-725.
Campbell, T., Farrell, W. (1998) Palliative radiotherapy for advanced cancer symptoms. International Journal of Palliative Nursing; 4: 6, 292-299.
Cho, C.Y. et al (1998) The association between chronic illness and functional change among participants in a comprehensive geriatric assessment programme. The Journal of the American Geriatric Society; 46: 6, 677-682.
Coyne, K.S. et al (2008) The impact of overactive bladder, incontinence and other lower urinary tract symptoms on quality of life, work productivity, sexuality and emotional well-being in men and women: results from the EPIC study. British Journal of Urology; 101: 11, 1388-1395.
Department of Health (2008) The End of Life Care Strategy. DH: London.
Department of Health (2005) The Mental Capacity Act. DH: London.
Department of Health (2001) The National Service Framework for Older People. London: DH.
Department of Health (2000) Good Practice in Continence Services. London: DH.
Department of Health (2000a) The NHS Cancer Plan: A Plan For Investment, A Plan For Reform. London: DH.
Drudge-Coates, L., Rajbabu, K. (2008) Diagnosis and management of malignant spinal cord compression: part 1. International Journal of Palliative Nursing; 14: 3, 110-116.
Gelber, D.A. et al (1993) Causes of urinary incontinence after acute hemispheric stroke. Stroke; 24: 3, 378-382.
Head, B., Faul, A. (2005) Terminal restlessness as perceived by hospice professional. American Journal of Hospice and Palliative Medicine; 22: 4, 277-282.
Help the Aged (2008) Incontinence. Help the Aged Policy Statement.
Hunskaar, S., Vinsnes, A. (1991) The quality of life in women with urinary incontinence as measured by the sickness impact profile. Journal of the American Geriatric Society; 39: 4, 378-382.
Kyle, G. (2007) Constipation and palliative care: where are we now? International Journal of Palliative Nursing;13: 1: 6-16.
Monz, B. et al (2007) Patient characteristics associated with quality of life in European women seeking treatment for urinary incontinence: results from PURE. European Urology; 51: 4, 1073-1081.
Nakanishi, N. et al (1999) Mortality in relation to urinary and faecal incontinence in elderly people living at home. Age and Ageing; 28: 3, 301-306.
Office of National Statistics (2008) Death Registrations.
Pettersen, R. et al (2007) Poststroke urinary incontinence: one-year outcome and relationships with measures of attentiveness. The Journal of the American Geriatric Society; 55: 10, 1571-1577.
Pratt, R. et al (2007) epic2: National Evidence-based Guidelines for Preventing Healthcare-associated Infections in NHS hospitals in England. Journal of Hospital Infection; 64S, S1-S64.
Skelly, J., Flint, A.J. (1995) Urinary incontinence associated with dementia. Journal of the American Geriatric Society; 43: 3, 286-294.
Stevens, A. (2008) Managing and treating opioid-induced constipation in patients with cancer. Gastrointestinal Nursing; 6: 9, 16-22.
Thomas, S. et al (2006) Choices in Opioid Induced Constipation. Maidenhead: Wyeth Pharmaceuticals.
Wagg, A. et al (2008) National audit of continence care for older people: management of urinary incontinence. Age and Ageing; 37: 1, 39-44.
Warnock, C. et al (2008) Evaluating the care of patients with malignant spinal cord compression at a regional cancer centre. International Journal of Palliative Nursing; 14: 10, 510-515.
Van Kerrebroeck, P. et al (2001) Tolterodine once-daily: superior efficacy and tolerability in the treatment of the overactive bladder. Urology; 57: 3, 414-421.
Yu, L.C. et al (1990) Profile of urinary incontinent elderly in long-term care institutions. Journal of the American Geriatric Society; 39: 1, 105-107.