Faecal incontinence can be a highly undignified experience for most people. It can happen for numerous reasons, one of which would be being at the end of life, when the body cannot function in the same way any longer. There are various publications by national bodies in the UK, including NHS England, the Department of Health and Social Care (DHSC) and NHS Scotland, which will be discussed in this article, with the aim to inform readers of the best way to care for someone requiring palliative care in the community and experiencing faecal incontinence.
Commissioning continence services
In 2018, NHS England published a document aimed at commissioners and discusses continence. The publication recognises that continence is an important component in a person's health and wellbeing at any stage of life and is also an important consideration in the use of health resources (NHS England, 2018). Adult incontinence is recognised as causing a significant loss of self-esteem, alongside depression and a loss of independence (NHS England, 2018). Incontinence and associated bladder and bowel disorders may be connected to physical problems, such as skin breakdown, falls, urine infection and catheter-associated urinary tract infection. The latter can cause confusion, which, in turn, may lead to falls, head injury or femur fractures that would require hospitalisation (NHS England, 2018). For people to receive the best continence care, appropriately trained professionals should concentrate on early assessment, thus allowing a patient-centered and cost-effective care pathway to be followed (NHS England, 2018). Following the assessment of the patient, triage according to the level of intervention required, and planning can take place to incorporate their care needs, such as the requirement for containment products/devices and medication. Therefore, NHS England (2018) stated that it is appropriate to fund and effectively resource a continence team as part of an integrated service, with a view to fund more local specialist requirements depending on the need for those resources at the local population level.
NICE guidelines for faecal incontinence
The National Institute for Health and Care Excellence (NICE) (2007) published clinical guidelines that covered faecal incontinence in adults. These stated that people who self-report faecal incontinence or are assessed to have it should be offered care managed by health professionals who have the relevant skills, training and experience and who work within an integrated continence service. In the community, a continence specialist would need to be referred to in the case of a palliative patient with inevitable continence needs. This should be done as soon as possible in order to maintain the best comfort and care for the patient. Health professionals should actively yet sensitively cover this topic with the patient, as they may be reluctant to state how severe the problem is due to its stigmatised nature (NICE, 2007). Regular assessment would be required of the palliative patient who is unable to communicate their needs, conducted in a sensitive manner so as to maintain their dignity.
NICE (2007) identified multiple groups at risk of faecal incontinence, which are always important to consider when nursing people in the community or in the hospital. These include frail older people; those with loose stools or diarrhoea from any cause; women following childbirth (particularly following third- and fourth-degree obstetric injury); people with neurological or spinal disease/injury; those with severe cognitive impairment, urinary incontinence, pelvic organ prolapse or rectal prolapse; people who have undergone colonic resection, anal surgery or pelvic radiotherapy; and those with perianal soreness, itching or pain, or learning disabilities (NICE, 2007). It is important to bear these groups in mind when assessing the patient, as a palliative patient may not be able to communicate their needs due to reasons such as stroke or learning disabilities, or they may be at higher risk than other palliative patients due to various comorbidities. The NICE (2007) guidelines stated that health professionals should consider a faecal collection device for people receiving palliative care with faecal incontinence and the associated loose stools.
DHSC white paper
The DHSC published a white paper in 2006 that covered a new direction for care in the community and was described as ‘an important new stage in building a world-class health and social care system’. It aimed to meet the health challenges of the new century and to ‘adapt to medical advances while also responding to demographic changes in society and increasing expectations of convenience and customer service from the public who fund the health service’ (DHSC, 2006). The white paper formed part of the Government's wider aim to reform health services, designing a service to meet the needs of the patient rather than forcing the patient to fit in around the service. This was a new way of flexibly addressing the service requirements of a varied and diverse community with multiple needs.
The white paper covered the important aspect of end-of-life care, stating that over half a million adults die in England each year, with only 20% dying at home despite 50% stating that they would want to die at home (DHSC, 2006). The Government then pledged to double its investment in palliative care services in order to meet the needs of patients and their families, giving more choices as to where to die while also recognising the needs of family members. End-of-life care networks were, thus, established in order to improve service co-ordination and help identify all patients in need, bringing together primary care services, social services, hospices and third-sector providers, community-based palliative care services, as well as hospital services. The aim was to ensure that all staff who work with people who are dying are properly trained to look after patients and their carers, thus extending the roll-out of tools such as the Gold Standard Framework and the Liverpool Care Pathway for the Dying and building on co-ordinated multi-agency assessments to ensure that health, education and social care services are organised around the needs of the dying person and their family (DHSC, 2006).
Scottish palliative care guidelines
The Scottish palliative care guidelines covered diarrhoea, identifying it as the passage of frequent loose stools with urgency, or as the passage of more than three unformed stools within a 24-hour period (NHS Scotland, 2016). The guidelines detail that careful clarification is required, as patients may describe diarrhoea to be a single loose stool, frequent stools of normal or even hard consistency or faecal incontinence. Diarrhoea can be a distressing and exhausting for both the patient and their carers; it is crucial to remember that it can be an embarrassing symptom and can impact on dignity, mood and relationships (NHS Scotland, 2016).
There can be multiple causes of faecal incontinence at the end of life, for example, cancers, immobility and medication. The Scottish palliative care guidelines (NHS Scotland, 2016) mention the following
The patient would, therefore, require an assessment that considers all these factors so that necessary steps can be taken to alleviate the problem or lessen the extent of the diarrhoea, by reviewing medications, comorbidities and food intake, for example (NHS Scotland, 2016). The guidelines state that careful history taking would be required, detailing the frequency of defecation, nature of stools, including consistency, colour and presence of mucous or blood; timing of the problem; and the ongoing and recent medications (NHS Scotland, 2016). A rectal examination and abdominal palpation would also be required, with a confirmatory abdominal X-ray, to exclude faecal impaction and intestinal obstruction. Persistent watery diarrhoea with systemic upset that might indicate an infective cause may require investigation (NHS Scotland, 2016).
In order to manage the effects of diarrhoea in the palliative patient, it is crucial to ensure the patient is well hydrated. The patient should be encouraged to drink clear fluids and eat simple carbohydrates, such as toast or crackers. It should be kept in mind that it may be difficult for them to digest lactose-rich foods, which should, therefore, be avoided in cases of infective diarrhoea (NHS Scotland, 2016). This is because diarrhoea caused by a virus can cause sensitivity to milk products for a period of time, even after the diarrhoea has cleared. Proteins and fats can then gradually be introduced back into the diet as the diarrhoea resolves.
Specific measures also should be undertaken to reduce the effects of diarrhoea, even if it is part of the patient's palliative/terminal condition. Causes of diarrhoea should be treated or excluded, for example, drugs, whereby laxatives, proton pump inhibitors and antibiotics should be reviewed (NHS Scotland, 2016). It is important to check and test for Clostridioides difficile, and advice from the radiotherapist and oncologist should be sought in cases where it appears the diarrhoea relates to the treatment programme (NHS Scotland, 2016). Faecal impaction and anal leakage may require laxatives or rectal disimpaction, for which the appropriate guidelines for subacute bowel obstruction must be followed with specialist involvement. A stool sample would be required for culture where infection is suspected. If the patient is receiving an enteral feed, the advice of the appropriate specialist would be required, along with a dietitian review, as a gastrostomy feed may cause diarrhoea (NHS Scotland, 2016). Concurrent disease should be considered in the patient evaluation, as diabetes and thyroid problems may contribute to diarrhoea in the palliative patient (NHS Scotland, 2016).
Diarrhoea may prevent the absorption of drugs, which are crucial for the comfort of the palliative patient (NHS Scotland, 2016). Continuous subcutaneous infusion (CSCI) may be required, alongside specialist advice. Persistent diarrhoea causes depletion in vitamins, minerals and trace elements that are important for normal body functions and may require replacing, such as sodium, potassium, magnesium and zinc (NHS Scotland 2016). Since glucose is pro-absorptive in the bowel, giving a glucose or electrolyte drink, such as Dioralyte or Lucozade Sport, may help the diarrhoea and replace the fluid lost (NHS Scotland, 2016). The guidelines also note that bacterial overgrowth or imbalance of the normal gut flora may cause diarrhoea despite negative stool cultures for pathogens, especially after ileo-colic resection or surgical formation of blind loops of gut. Thus, it may be important to consider discussing a course of metronidazole with gastrointestinal specialists (NHS Scotland 2016). Methylcellulose tablets can also be given by a specialist, and octreotide given by CSCI under specialist advice may reduce high-output diarrhoea following ileostomy or colectomy, or caused by carcinoid syndrome, graft versus host disease and cancers and AIDS (NHS Scotland, 2016). Candida infection has also been found to cause secretory-type diarrhoea. A referral to the local continence service would be required for the correct devices, such as pads and collecting devices.
The skin in the perianal region can become very excoriated as a result of faecal incontinence. Therefore, skin care and regular checking of the area for any signs of breakdown would be required. Ulcers are common if the person is left lying for too long, especially if they have continence issues, and two-hourly turns are required to maintain skin integrity. Certain things should be avoided by all carers when cleaning the patient following an episode of incontinence, for example, baby wipes, as they often contain alcohol (NHS Scotland, 2016). The area should be washed after an episode of diarrhoea, using a shower attachment or a soft, disposable cloth and non-scented soap, before patting the area dry; a thin layer of durable barrier film or cream should be applied to protect the skin (NHS Scotland, 2016). Cotton underwear should be used, and tight clothing should be avoided.
Faecal collection devices
Patients receiving palliative care at the end of life would most probably need a faecal collection device if they experience persistent faecal incontinence, as this would be best to maintain their dignity in the dying process (NICE, 2007).
Faecal collection devices are used in order to channel stool from the rectum into a container, which would need frequent emptying and care. These devices are usually only suitable for very loose stool (Bristol Stool Chart score of 6 or 7) (Continence Product Advisor, 2019). In palliative care, they would be required when the patient has become very ill or confined to their bed, whereby they would need assistance with bowel management. The stool would either be drained from the rectum before leakage occurs through the insertion of a tube, or it would be collected as it leaves the body, and a container would either be attached to the drainage tube or would adhere to the peri-anal area (Continence Product Advisor, 2019). These devices also aid in maintaining skin integrity by preventing faecal leakage to the delicate skin area. The patient also might feel more comfortable with this, as fewer linen changes may be required.
The external anal pouch consists of a bendable wafer that has an opening at its centre, where one side of the wafer adheres to the skin around the anus and the other side is connected to a collection bag. The bag has a re-sealable port through which faecal matter can be emptied, without requiring the wafer to be removed from the skin, and the port can be linked to a larger gravity drainage bag (Continence Product Advisor, 2019). Some of these bags also have a flap to allow flatus to escape and prevent the bag filling with gas. An intra-anal stool bag is made of latex and is inserted into the anus with an adhesive attachment (10 cm in diameter) applied round the anus to secure it in position.
Rectal tubes and catheters are inserted into the rectum to direct loose stool into a collection bag, and a balloon near the tip of the catheter (inside the body) can be inflated once in position to prevent leakage of stool and to stop the tube from coming out during a bowel movement.
Rectal trumpets are made up of a naso-pharyngeal airway connected to a drainage bag (Continence Product Advisor, 2019). The flange (wide end) is inserted into the rectum. A trumpet is shorter than a rectal tube, and has a lower chance of causing damage to the rectal lining. The other end of the trumpet can be connected to a drainage bag.
There are some disadvantages to the use of faecal collection devices (Continence Product Advisor, 2019), which should be borne in mind by care staff. External and internal anal pouches can cause skin damage due to the adhesive used on the skin, and rectal catheter systems are only suitable for use with liquid stool. The tape used to secure rectal catheters can cause skin damage. The use of a rectal tube (or trumpet) with or without inflating the balloon remains a controversial choice due to the risk of damaging the lining of the rectum or anal sphincter or stimulating intestinal secretions, making diarrhoea and bowel leakage worse (Continence Product Advisor, 2019). Serious complications can also arise from the use of rectal catheters, such as rectal bleeding, mucosal pressure necrosis, fistula and autonomic dysreflexia.
Therefore, these devices should be used with caution and are contraindicated for those with intestinal mucosal disease, immunosuppression, gastrointestinal bleeding or bleeding tendencies, recent heart attacks or prostate surgery (Continence Product Advisor, 2019). A specialist continence advisor would be required to visit the patient and assess them and review them regularly to ensure that their care needs can be met.
Conclusion
Overall, there are numerous publications that cover the difficulty of managing faecal incontinence in the dying patient. It is important to review and assess the patient carefully, seek a specialist continence advisor's professional opinion and use continence products with care, maintaining an awareness of the risks involved and the patient's condition and needs to ensure they are best met at all times.