Palliative care in the UK is an estimated 40% of the district nurse (DN) caseload (Queen's Nursing Institute (QNI), 2021). National Institute for Health and Care Excellence (NICE) (2019) guidelines states that palliative care aims to support service users to remain active by providing relief from pain and distressing symptoms. It advocates the use of regular assessment, employing practical and emotional support strategies. Palliative care can be delivered along the trajectory of any illness in various settings, but many service users prefer their own home (Midlöv and Linberg, 2019; Walshe, 2020). The British Geriatric Society (BGS) (2021) further endorses community care, as the familiarity of home can increase quality of care and service user satisfaction. The NHS Long Term Plan (2019) also encourages home care wherever possible, avoiding unnecessary hospital admissions. It is suggested that over 60% of individuals in the UK would prefer a home death (McIlfatrick et al, 2017; Ramplin, 2019; Kelly, 2021); however, due to complications, choices made by family and unfeasibility, only half achieve this goal. Further, Boot (2016) and Stoddard et al (2021) found that service users find the home environment comforting at the end of life, and it also allows for family members to be involved in all aspects of care.
The need for home palliative care is mirrored globally, and community services are at the forefront in enabling individuals to achieve this wish (Boot, 2016; Reed et al, 2017). Kozlov et al (2018), in a study of US palliative community services, found palliative care services were underutilised as a result of negative perception, reducing benefits to service users. However, McIlfatrick et al (2017) posited that palliative care should commence earlier for all life-limiting conditions, to enable better palliative care delivery. Many service users do not want to be reminded of their mortality when they are not experiencing symptoms or require DN support.
Nazarko (2019) suggests that focus of holistic palliative assessments should be on the individual's aims and what they find important. Boot (2016) further suggests that it is the human connection between the DN and the service user that enables a fuller understanding of needs and aims of care. This gives DNs the opportunity to assess an individual's abilities and develop strategies through equipment use or referral to other health and social care services to provide support. DNs, within this context, are gatekeepers to MDT support and facilitate independence for as long as possible, and can implement additional care when they are unable to care for themselves (King's Fund, 2016; Sekse et al, 2018).
Although incontinence is not a natural part of the ageing process, it increases with age due to functional and cognitive decline, reduction in mobility or life-limiting illness (Yates, 2019; Smith et al, 2020). Nazarko (2019) reiterates that, later in life, physiological changes can make it difficult to maintain continence. It is often stated that urinary incontinence (UI) is experienced by over 60% of UK palliative service users; however, as it is often underreported, this figure can only be viewed as an estimation (Farrington et al, 2013; Yates, 2019). It is often the severity of the UI, rather than the type, that impacts quality of life (Nazarko, 2017). Palliative incontinence is often managed solely by DNs without wider collaboration. Midlöv and Lindberg (2019) suggest that collaboration with MDT professionals is one of the cornerstones of complete palliative care within the community.
The symptoms and manifestation of UI, and the loss of bodily function, can be harrowing for an individual, adding to the general distress and discomfort experienced and causing uncertainty for the future (Nazarko, 2017; Kelly, 2021). Effective, timely and continual assessment can mitigate these fears, and appropriate strategies should be the goal of DNs. Ostaszkiewicz (2020) found that the loss of independence and dignity incited the most fear. Smith et al, (2019) reiterates that continence is central to the preservation of dignity, and management strategies should focus on minimising the impact of symptoms to promote normality and dignity. Management of incontinence in palliative service users should be as much of a priority as symptoms of pain and nausea, increasing an individual's quality of life and reducing anguish and discomfort (Farrington et al, 2015; Pais et al, 2020).
Assessment process
UI has a stigma and can cause an individual to hide symptoms and avoid seeking appropriate help (Payne, 2017; Smith et al, 2019), often causing a communication barrier with the DN. Incontinence can lead to anxiety and depression, withdrawal from social interaction and lower quality of life (Chughtai et al, 2019). While incontinence is not a life-threatening condition, it has been equated to a state worse than death (Gutmanis et al, 2017; Ostaszkiewicz, 2020). DNs are often the main support for community palliative service users, and they should feel confident and informed to be able to offer advice. Miller et al (2019) found that openness and honesty from the DN was appreciated by the service user, who felt able to ask questions and be transparent in their needs. Stoddard et al (2021) suggest that individuals see incontinence as the progression of disease, often causing moral distress and feelings of loss of independence. Therefore, it is essential that DNs are open and available for questions relating to a service user's fears. Living with incontinence is often a subject that is avoided or skimmed over by service users and nurses, as they do not wish to undermine their dignity or to increase embarrassment (Griffiths, 2017; Ramplin, 2019).
Walshe (2020) found that DNs invest time to construct a relationship with service users, to better assess for acute needs and facilitate future planning through a nuanced view of the service user and their living environment. Sekse et al (2018) add that the frequent visits DNs have with palliative service users allows for the development of a trusting relationship, which can aid communication and care planning. In line with the NICE (2019) guidance of providing relief from distressing symptoms, incontinence is often a symptom that can be effectively managed through continual assessment, leading to practical and emotional support. This requires skilled and considerate communication to increase the efficacy of the assessment of the service user (Yates, 2019). With appropriate assessment to understand needs, capabilities and aims, a management strategy can be undertaken to maintain normality in the individual's functioning and social interactions and increase quality of life for an extended period (Nazarko, 2018). Reassessment must be undertaken at regular intervals or when clinically indicated by physical changes or decline in health (Gutmanis et al, 2017; Kelly, 2021).
Kelly (2021) adds that, when assessing incontinence, consideration must be taken to encourage the service user to feel empowered to participate in choices of management strategies. Service users must also be given the time and opportunity to question care plans; this understanding will increase service user empowerment. The service user should be supported to understand the physical and psychological changes and implications that occur during progression of their illness. Engaging with the MDT, specialist palliative care nurse and the continence service for targeted support and advice is fundamental for high-quality care and can elevate service user satisfaction and alleviate the stigma and humiliation that incontinence can engender (Kelly, 2019).
Service user and carer education
Person-centred care is a process that concentrates on the goals of the individual, while acknowledging their distinctiveness and autonomy beyond their medical condition (World Health Organization (WHO), 2015; King's Fund, 2016). The person-centred approach improves the quality of individualised care and can increase service user choice and autonomy (Nazarko, 2018; Ostaszkiewicz et al, 2020). However, it is recognised that, with the growing caseloads and the subsequent time pressures on DNs, there is a need for speed during visits, although service users must be afforded the time and space to discuss all elements of their care.
With regard to skincare, proactive incontinence management is better than reactive strategies to preserve the dignity and comfort of individuals (Stoddard, 2021). To allow service users and their families to make informed decisions about their care, it is essential that education is given. Kelly (2021) suggests that clear and concise communication is used with service users and carers to avoid misinterpretation and confusion, further engendering a collaborative relationship. Smith et al (2020) also suggest that the ability to manage incontinence and undertake personal hygiene routine allowed the service users to remain clean, but also to avoid humiliation. A robust and regular personal hygiene regime is of particular importance with palliative service users experiencing incontinence, as they are at elevated risk of skin deterioration and wound formation due to their increasing fragility, decreased diet and mobility (Payne, 2017). It is the DN's role to educate and provide relevant support to protect the skin through the application of barrier products and systems to vulnerable areas of the skin affected by exposure to urine.
DNs have a responsibility to inform, support and educate service users and their family/carers on all aspects of care (Reed et al, 2017; Midlöv and Lindberg, 2019). The continual support offered by DNs helps to alleviate the pressure of responsibility from family caregivers who were new to providing intimate care (King's Fund, 2016; Stoddard, 2021). Nazarko (2019) suggests that the goal of DN support and advice should be to avoid the complications of the risks involved with poorly managed incontinence, wounds, falls and loss of self-confidence by assessing and implementing person-centred management plans, which are regularly evaluated to ensure that they meet the needs of the individual's physical and psychological care. Stoddard et al (2021) reiterate that poorly managed incontinence can exacerbate discomfort and increase agitation, contributing to a loss of dignity and emotional distress.
Choice of incontinence products
There is limited professional guidance for the management of palliative UI beyond their physical and psychological needs being effectively met. However, there is paucity in the evidence around the subject of continence product preference. The Urology Foundation (2016) highlighted the need for research to understand the role of support and continence products preference within all settings and for all service users. Kelly (2021) correctly states that a continence assessment is an essential process to completely understand a service user's needs, environment and prognosis; these aspects, along with clinical information, can aid the development of a suitable management plan.
Containment products, such as absorbent pads and toileting aids, can contribute significantly to the quality of life of a service user, enabling them to maintain independence. Studies suggest that the majority of service users preferred containment products rather than invasive catheterisation (Kelly, 2019; Pais et al, 2020). Yates (2019) advise caution on selection of absorbent pads, as an inappropriate pad can either not offer adequate protection or be too absorbent and cause skin damage. This is an opportunity for MDT collaboration to advise on appropriate products.
The use of indwelling catheters is often advocated for comfort, rather than clinical indication, in palliative service users. Catheter use can aid the prevention or management of pressure or moisture-related wounds (Farrington et al, 2013; Royal College of Nursing, 2021). However, Gutmanis et al (2017) found that catheters can provoke strong reactions in patients; the need for catheterisation is often seen as an indication of rapid decline at the end of life. It is also important to help service users understand the rationale behind catheter use, as guidance states that use should be only undertaken as a last resort or for clinically indicated reasons. It is then the role of the DN to weigh the risks against any potential benefits (Nazarko, 2013; Pais et al, 2020).
Need for dignity
It is of the utmost importance that an individual's dignity is maintained and that their self-respect is promoted and protected throughout all interventions (Kelly 2021; Stevens et al, 2021). Ostaszkiewicz et al (2020) underline the importance of dignified care as a core concept of nursing and reinstate that respectful care is closely related to increased service user satisfaction, although expectations and levels of dignity often vary throughout an individual's life course. Stevens et al (2021) found that older adults often experience increased control and autonomy over decisions about their care when delivered in their own homes. This is in agreement with Midlöv and Lindberg (2019), who found service user conversations in the home environment elicited more open responses.
As consent is required to undertake interventions, the more information that can be given will lead to better understanding and informed consent being given by the service user (Walczak et al, 2017). It can be perceived as an invasion of privacy and loss of personal control to have their incontinence discussed with the DN; therefore, the DN must be mindful of their approach to ensure dignity and privacy are maintained during the assessment process (Kelly, 2021).
A service user who has high levels of dependence in maintaining their personal care can feel their dignity is eroded, as the invasion of privacy is often at odds with their usual values and personal standards (Ostaszkiewicz et al, 2020). However, the perceived loss of dignity from receiving incontinence care may be considered insignificant when related to symptoms such as pain and nausea. The issue of maintaining dignity, therefore, may not be as significant to a palliative service user as a healthy individual.
Implications for practice
Increasing workloads, complexity and ways of alternative working are experienced worldwide, along with the different services offering palliative home nursing care. Ostaszkiewicz (2020) state that the ageing population and the increasing acuity and complexity of service users and their care needs are to be balanced against budget constraints, staffing availability and resources, which has the potential to negatively impact care delivery. DNs can often feel like they work in isolation with their palliative service user. There is a need and opportunity for enhanced collaboration between other community-based services (King's Fund, 2016).
McIlfatrick et al (2017) suggest that the palliative care aspect of a DN's role is valued and respected. Palliative continence assessment is often undertaken by skilled DNs who are generalists in their knowledge. A collaboration with continence services would allow advanced skills, knowledge and insight of appropriate management strategies to be implemented. Increased involvement and collaboration with the SPCN could further enhance confidence and competence in palliative assessments and offer the DN increased skills in this area of growing practice (Khalil et al, 2019; Ramplin, 2019). This is a move away from the usual territorial boundaries of role limitation and would increase integration of all community services, aiding in the delivery of seamless service user care. Kelly (2021) states that effective leadership is essential in healthcare; to cultivate a collaborative approach, DNs, therefore, must own the responsibility to lead community nursing teams and the MDT and social care professionals involved in palliative care, to prevent fragmentation of services and develop streamlined delivery (Payne, 2017).
Conclusion
The priority for all should be well-planned, individualised, person-centred care, improving the quality of life of patients within their home environments (Reed et al, 2017). As Walshe (2020) documents, there is a need to work with the service user at a time and pace of their choosing. Regular support visits can enable and facilitate continuing dialogue, along with scheduled care planning that can be reactive to changing need. As with most DN teams, there is often a lack of continuity in the staff visiting a service user, which can cause disruption in conversations and assessment process. This can be alleviated by concise and thorough documentation within the clinical notes and robust assessment plan objectives. The increased use of daily handovers could be utilised to enhance the continuity of care for palliative patients and increase the quality of the relationships developed with service users. Increasing education opportunities for staff within the MDT could increase knowledge and opportunities for better community collaboration.
The need for DNs will increase as more palliative service users choose home-based care. The DN needs to be confident and competent in all aspects of holistic palliative care, from the earliest point of the diagnosis to the end of life, and must feel empowered to collaborate with the MDT, expand their knowledge of clinical skills and use professional connections in order for high-quality care to be delivered in effective, safe, and timely manner.
Incontinence can affect an individual's dignity and can impede quality of life. By undertaking considered and compassionate assessment, listening to and working with palliative service users to understand their abilities and goals, and allowing implementation of effective management strategies, DNs can enhance quality of life for service users. DNs need to be proactive with guidance and reactive to service users' needs, ensuring high-quality palliative care is delivered to all who need it.
Key points
- Urinary incontinence is not a natural part of ageing. Prevalence is seen to increase in palliative service users.
- Urinary incontinence can have a significant negative impact on an individual's dignity, self-esteem and quality of life.
- Palliative care is a large proportion of district nurses' workload, and the need for confidence and competence in assessment and communication skills is vital.
- There is a need to engage with service users and their families in education, to promote independence and dignity.
- There is a need for collaboration and cohesion between community services to increase care efficacy and delivery.
CPD reflective questions
- What is your perception of your competence when assessing palliative service users?
- Which member(s) of the multidisciplinary team do you collaborate with for continence assessment?
- How confident are you at engaging in service user/family education regarding skin care and incontinence?