Colorectal cancer is the fourth most common cancer in the UK (Bowel Cancer UK, 2019). More than half of patients diagnosed with colorectal cancer in the UK present at an advanced stage, with 23–26% having metastases at diagnosis (Cancer Research UK, 2017). Bowel obstruction is a risk with advanced disease, with some patients presenting with this as their initial symptom.
In addition to people presenting with advanced disease, patients who have undergone treatment for colorectal cancer with a curative intent may require palliative treatment if their cancer recurs.
Stoma formation as a palliative procedure can have far-reaching implications for a patient's quality of life. However, while much has been written about the impact of stoma formation on quality of life, little literature focuses on the specific impact that this has on patients receiving palliative treatment.
A literature search was performed using the EBSCO, PubMed, Wiley and Cochrane databases using the terms stoma, palliative and quality of life. Studies predominantly focused on technical aspects of management (eg a comparison between stent insertion versus stoma formation or using a stent as a bridge to elective surgery) and measured outcomes in terms of length of life, duration of hospital stay and cost effectiveness (Nagula et al, 2010; Anwar et al, 2012). Studies that set out to explore patients' quality of life, again, focused on survival benefit measured in months (Anwar et al, 2012), or either only included patients undergoing elective procedures or excluded those undergoing palliative procedures altogether (Thaysen et al, 2012; Tan et al, 2016).
Therefore, to examine potential issues experienced by this patient group, the large volume of literature surrounding stoma formation and quality of life will be drawn upon and general themes examined.
Surgical procedures and stoma formation
Stoma formation as a treatment for colorectal cancer involves bringing out a section of bowel onto the abdomen as either an ileostomy (from the ileum) or colostomy (from the colon). A bag is then worn over the stoma to collect faeces. The function of the colon is to reabsorb fluid so the output from a colostomy is likely to be semi-formed or formed and a closed bag can be worn and changed when the stoma functions. As an ileostomy is sited above the colon, the output is of a more liquid consistency and a drainable bag is worn, which is usually emptied on average 4–6 times per day (Burch, 2008; Black, 2015; Hill, 2020).
Surgery to create a stoma can be considered as a palliative procedure for a variety of reasons when dealing with advanced colorectal cancer. Malignant large bowel obstruction can occur either at presentation or through progression of the disease, and may be caused by the primary tumour compressing the bowel or widespread peritoneal disease (Ferguson et al, 2015). Treatment options can include stent insertion if the tumour is in the descending colon or sigmoid colon, which offers an alternative to major surgery in people who are elderly or infirm (Nagula et al, 2010; Costi et al, 2014). However, whether this can be done depends on the site of the obstruction and carries risks of migration or perforation necessitating surgery later on (Ferguson et al, 2015).
When surgery is the preferred option, the decision about whether to perform a bowel resection or a bypass procedure will be multifactorial and considerations such as the patient's performance status and comorbidities as well as disease progression will be considered (Association of Coloproctology of Great Britain and Ireland (ACPGBI), 2017).
For example, in a frail patient with advanced disease, a defunctioning or diversion loop stoma may be more appropriate than a major bowel resection, as it carries fewer risks than major surgery while resolving the obstructive symptoms (Asteria et al, 2010). In patients with irresectable tumours, a defunctioning stoma may be recommended to prevent complications from potential obstruction interfering with the ability to complete chemotherapy or chemoradiotherapy treatment (Mann et al, 2010).
All surgical procedures carry risks, and this is no less true in palliative procedures. Mortality and morbidity rates are high in emergency surgeries for colorectal cancer, and risks increase with age and associated comorbidities (ACPGBI, 2017). Decision making regarding treatment options should take into account comorbidities, life expectancy and the risks and benefits of treatment; older patients in particular should be counselled about the potential impact on quality of life postoperatively (Asteria et al, 2010; ACPGBI, 2017). Palliative procedures should aim to provide the maximum benefit in terms of symptom relief while having minimum impact on quality of life (Nagula et al, 2010; Ferguson et al, 2015).
The decision whether to form an ileostomy or a colostomy will be governed primarily by the site of the cancer and, in emergency surgery, this can be influenced by new findings such as peritoneal metastases (Costi et al, 2014; Elmessiry and Mohamed, 2020).
Nagashima et al (2019) conducted a retrospective study to try to determine whether ileostomy or colostomy was ‘superior’ in terms of quality of life for the patient. Surgical outcomes and stoma-related complications—including irritation, dehiscence, high output, fistula incidence, necrosis and prolapse —between the two groups were compared.
They concluded that in their cohort of patients, while there was no difference in surgical complications, those with an ileostomy were significantly more likely to experience stoma-related complications, in particular skin irritation and high output as well as an adverse effect on renal function. The authors acknowledge the small sample size of their study and that its retrospective, single-centre design has limitations, and they advocate for randomised control trials to assess this issue further. It is also worth noting that the stoma complications assessed were limited to six possible issues by the authors, which also limits the information gathered.
Patient assessment
Patients with a new diagnosis of cancer in addition to a new stoma can experience increased problems with adjustment and require more support (Ang et al, 2013).
Access to clinical nurse specialist (CNS) support in the periods before and after surgery has been demonstrated to significantly improve outcomes and reduce anxiety in patients undergoing surgery resulting in stoma formation (Boyles, 2010; Noone, 2010; Davenport, 2014). This not only provides the patient with the opportunity to discuss stoma management and lifestyle issues, but also means they can receive emotional support regarding their diagnosis. The CNS then has the opportunity to assess the patient fully and identify potential issues with stoma management and support that will be needed (Bird et al, 2019).
The implications of stoma formation should not be underestimated. In the very elderly, for example, issues such as poor vision, poor dexterity or dementia can affect their ability to care for their stoma (Burch, 2008; Bird et al, 2019). In the absence of support from family, this can potentially mean the difference between living independently and needing to be cared for, thereby affecting patient choice about where to spend their remaining days. Involving patients and their families in decision-making and ensuring they are well informed and acting as the patient advocate are therefore key (Ferguson et al, 2015; Skipper, 2019).
While patients scheduled for elective or semi-elective procedures are likely to be able to benefit from this support, those undergoing emergency surgery are less likely to have access to CNS support preoperatively and/or in the immediate postoperative period (Borwell, 2011).
A lack of preoperative CNS assessment can have implications for the quality of the stoma formed. It is well documented that preoperative assessment and stoma siting by an experienced, trained practitioner has been shown to reduce the potential for management issues owing to poor positioning of the stoma (Rust, 2011; Cronin, 2014; Burch, 2018).
Siting within the abdominus rectus muscle helps to minimise the incidence of parastomal hernia (Cronin, 2014). The avoidance of creases, scars, bony prominences or existing herniation and the assessment of the patient in various positions are all necessary to determine the optimal stoma site for the patient and prevent long-term issues with management, such as chronic leakage (Burch, 2018).
Consideration of the ability of the patient to see the stoma, the position of the patient's waistband on clothing and any hobbies or activities that are important to the patient are key to ensuring that the stoma does not have a negative impact on the patient's ability to live their life as they wish (Burch, 2008). This is particularly important in the palliative setting as, even if the stoma is technically reversible, this is less likely to be done in view of increased anaesthetic risk and postoperative morbidity and mortality.
While stoma siting and good surgical technique mitigate the risks of complications, they do not eliminate them altogether (Burke, 2017). Complications can include parastomal herniation, stoma retraction, stoma prolapse and separation at the mucocutaneous junction, all of which can result in difficulties with management in terms of leakage and appliance adherence (Burch, 2008). For patients, the psychological impact of having a stoma that is difficult to manage can be devastating and result in them withdrawing from activities and relationships (Grant, 2019; Rust, 2011). This is of particular significance when overall prognosis is poor.
Expert assessment and advice from a CNS when complications do occur is crucial to ensure that the correct products are used and any issues with leaks are resolved so a good quality of life is preserved (Davenport, 2014).
Treatment and medication
Palliative treatments and their side effects have specific implications for patients with a stoma. Drugs used in palliative chemotherapy such as capecitabine or irinotecan can result in severe diarrhoea (Iacovelli et al, 2014; Mead and Dowling, 2015). This can lead to hospital admission and modifications to the chemotherapy regimen or eventual ceasing of chemotherapy altogether if not well tolerated (McQuade et al, 2016; Robertson et al, 2016).
Patients with an ileostomy are unable to absorb fluid through the colon and are therefore at an increased risk of complications associated with a high-output stoma such as electrolyte imbalance and renal impairment (Skipper, 2019).
The CNS is well placed to provide expert advice regarding management of chemotherapy-associated diarrhoea or high stoma output with loperamide and identify the need for admission for fluid replacement as necessary (Mead and Dowling, 2015).
Chemotherapy can also cause constipation (McQuade et al, 2016). Medications frequently used in palliative care such as opioid analgesia can also have this side effect. Patients with a colostomy can still experience constipation and therefore advice from the CNS regarding dietary modifications and suitable laxatives may be required. (Burch, 2007; Joint Formulary Committee, 2021).
Chemotherapy also has the potential to affect a patient's ability to care for their stoma. The chemotherapy given to patients with colorectal cancer in an adjuvant or palliative setting is often a combination of fluorouracil and oxaliplatin (folfox), or capecitabine and oxaliplatin (capox). There is clear evidence these regimens provide a potentially significant benefit in disease-free survival in the adjuvant setting, prolonging progression-free survival in palliative care (Han and McKeage, 2012).
However, the neurotoxicity of oxaliplatin can result in debilitating peripheral neuropathy in the short term or to some degree on a permanent basis (Padman et al, 2015; Soveri et al, 2019). In severe cases, this loss of sensation can affect dexterity in fine motor tasks (eg managing buttons or holding onto money), affecting quality of life (Wallace and Taylor, 2011; Soveri et al, 2019). Palmar-plantar erythrodysaesthesia (hand-foot syndrome) can occur as a side effect to fluorouracil, causing severe soreness to the hands and feet, which can affect dexterity. Both side effects have implications for patients with a stoma, potentially affecting their ability to manage stoma care independently and may necessitate further CNS input and support (Wallace and Taylor, 2011).
Psychological implications
‘Colorectal cancer and the potential consequences of the treatments can have a major impact on people's mental and emotional life as well as influence their self-perception and social identity. This could mean changes from being a previously fit person to being someone with physical or mental problems, needing care and help from others, and potentially having limited life expectancy.’
National Institute for Health and Care Excellence, 2020:19
In addition to the emotions associated with a cancer diagnosis, stoma formation can result in feelings of fear and anxiety, as well as have a negative impact on body image and sexual intimacy, resulting in isolation (Boyles, 2010; Burch, 2015; Grant, 2019).
The impact of stoma formation is no less in a patient undergoing palliative treatment; these patients are encountering changes to their body image in addition to the knowledge that their condition is life limiting (Borwell, 2011). As treatment options improve, people will increasingly continue with palliative treatment and live with advanced colorectal cancer for longer periods of time (Mead and Dowling, 2015).
To ensure that this time is not affected by anxiety surrounding their stoma is imperative. A good support system can aid adjustment for patients with a new stoma and is particularly important in the immediate postoperative period (Davenport, 2014; Burch, 2015).
However, even with access to CNS support, patients may be reluctant to raise issues that they are experiencing in relation to their stoma for a variety of reasons. They may feel they should be grateful that they have had surgery to prolong their life and not wish to complain (Soveri et al, 2019). They may feel uncomfortable discussing issues surrounding sexuality and relationships and health professionals may also not feel confident to address this subject (Lee et al, 2011; Bird, 2019a). Patients can struggle with management issues for lengthy periods before accessing support from a stoma care nurse (Vonk-Klaassen et al, 2016). The ability to identify signs of psychological distress is key to the CNS being able to provide effective support (Bird, 2019b). Signposting or referrals to appropriate agencies can then take place (Bird et al, 2019).
There are useful tools that can help CNSs conduct an assessment and form the basis of conversations with the patient. From a purely stoma-related assessment perspective, the Association of Stoma Care Nurses UK clinical guidelines (ASCN, 2019) contain a quality-of-life questionnaire (page 47), which asks patients to rate how often they have experienced certain feelings related to their stoma. This can be used at regular intervals throughout the postoperative period to identify specific issues and measure perceived quality of life over time. For a broader perspective, the Macmillan Holistic Needs Assessment (HNA) asks patients living with cancer to complete a self-assessment to identify areas of concern such as practical, emotional, spiritual, physical and lifestyle/information issues as well as family relationships. This identifies specific examples for the patient and helps the health professional to identify needs that the patient may not feel comfortable raising during a routine follow-up appointment (Macmillan Cancer Support, 2018). Disseminating the information gathered from tools such as these among different specialities within the multidisciplinary team is vital to providing high-quality support to patients receiving palliative treatment for colorectal cancer.
The structures within CNS departments, which differ, will influence how this occurs. Some CNS teams have a dual remit, combining stoma care with a colorectal CNS role. In some trusts, the departments are separate specialities, albeit working closely together. In other trusts, a stoma care CNS may see patients in both hospital and community settings, or may be hospital based and refer patients to dedicated community nurses for follow-up. Whatever the structure, it is essential that there is excellent communication between all health professionals so any stoma-related issues and their impact on quality of life can be swiftly identified and addressed (Borwell, 2011; Foskett, 2012). This extends to other health professionals who are involved in patient care, such as GPs, district nurses, palliative care nurses, clinical psychologists, oncologists and surgeons (Wallace and Taylor, 2011).
Conclusion
Quality of life can be greatly improved through creating a stoma to alleviate obstructive symptoms. However, although some patients have few issues with stoma management, people can struggle to adapt to life with a stoma. Therefore, access to the support of a clinical nurse specialist who can assist with psychological adjustment and address any management issues is essential to ensure wellbeing.
Expert support is of paramount importance when considering patients undergoing palliative treatment, as interventions should reduce quality of life as little as possible. The use of tools such as the ASCN UK quality of life questionnaire or the Macmillan HNA tool can help the CNS to identify issues and initiate discussions surrounding sensitive topics.
Unfortunately, patients with advanced colorectal cancer are more likely to require emergency treatment, and therefore may not have the same level of CNS support as that available to patients undergoing treatment electively. The repercussions of having a poorly positioned stoma with associated management difficulties and limited preoperative and postoperative support cannot be overestimated for any individual.
In the palliative patient, ensuring good quality of life is of increased significance. While general principles have been applied when writing this article, the author found limited literature surrounding this particular patient group's experience so this could be an area to research to identify service development.
Key Points
- Stoma formation may be necessary as a palliative procedure for a variety of reasons
- There is a potential for a negative impact on quality of life if a stoma is difficult to manage
- Input from the clinical nurse specialist is essential to ensure optimal stoma siting and correct product selection, and for providing management advice and psychological support
- Patients who have surgery as an emergency are less likely to have this support in place initially
CPD reflective questions
- Have you cared for a patient who has had a stoma formed as a palliative procedure? How did this differ from caring for patients who have had a stoma created as part of curative treatment?
- Reflect on the last time that you cared for a patient with a new stoma. Did you consider the psychological impact that the surgery may have had?
- Are you able to identify factors that may make stoma management a challenge?