Pancreatic cancer is often diagnosed late, having a devastating impact on both the patient and the people around them. Yet, the authors have not identified any research that explores the experiences, challenges and well-being of those caring for people with pancreatic cancer within the UK. It is recognised that, generally within the UK, carers are managing increasingly complex health conditions, with limited support and resources. It is likely that pancreatic cancer carers are no exception. As tumours in the pancreas are often diagnosed in the late stages, families are often confronted with managing severe symptoms and complex medical regimes, while processing the often poor prognosis. Due to the extreme nature of this cancer, it is important for healthcare professionals to understand the impact of this on carers. Community nurses are especially well placed to identify and support this group.
Carers in the UK
The term ‘carer’ can be used to describe any individual who provides unpaid care to another person in day-to-day life (NHS England, 2022). Carers' support can be practical, emotional, financial, and spiritual (Hudson and Payne, 2009), and they often lead the organisation of professional care and appointments (World Health Organization (WHO), 2020). Carers play an essential role in allowing the people they care for to live and die in their own homes (Farquhar and Moore, 2017). The WHO (2020) acknowledges family members can have needs, which often parallel, or even outweigh, the person they are caring for. However, many people who meet this description do not recognise that the term applies to them or dislike the connotations of the label (Argyle, 2016). For example, they prefer to identify themselves primarily as a ‘daughter’ rather than as a ‘carer’.
In the UK, it is estimated that there are 6.5 million carers, representing 1 in every 8 people (Carers UK, 2021). The NHS is highly dependent on unpaid carers; they are estimated to provide care worth around £56 billion annually (Office for National Statistics, 2017). For carers of people living with cancer, the majority are women aged between 45 to 64 years providing an average of 17.5 hours of care a week (Macmillan Cancer Support, 2016). Many cancer patients have several carers, who take on different responsibilities (Ipsos MORI and Macmillan Cancer Support, 2011). Cancer caregivers report that care can affect emotional, social, work-life, financial, health and broad aspects of their lives (Macmillan Cancer Support, 2016).
Carers are a group known to require support from health professionals. The WHO (2020) states that, as a minimum, healthcare professionals should be holistically identifying, assessing, diagnosing and providing solutions to family members who are distressed. Similarly, the National Institute for Health and Care Excellence (NICE) (2020) guidelines state that community nurses have a responsibility to value and support carers. This means that professionals should provide carers with compassionate care, adequate information and opportunities for their concerns to be addressed (NICE, 2020). For example, carers should be offered the opportunity to discuss their needs in private with a professional (NICE, 2020). In addition, healthcare professionals are also responsible for providing and facilitating additional professional support through referrals, as required (NICE, 2020). This includes a needs assessment through the local authority, which is the right of all carers under the Care Act 2014 (UK Legislation, 2014). These guidelines are especially relevant for nurses, who are often the professional group with most contact with carers of people living with cancer (Argyle, 2016).
Despite the recommendations, less than a third of carers feel professionals take their mental and physical wellbeing into account and only 24% of all carers receive a needs assessment (Carers UK, 2021). This suggests healthcare professionals are not consistently or adequately supporting or referring carers, despite this groups' well-documented emotional, social, and financial vulnerabilities (Carers UK, 2021). This may be due to a multitude of reasons, including professionals' difficulty identifying carers (Argle, 2016), lack of confidence or education initiating conversations around caring (Kisorio and Langley, 2016), and the unsustainably high demands nursing staff face (Maben et al, 2012).
The current expectation on carers is likely to increase, as the NHS moves towards integrated care and patients being supported in the community (The King's Fund, 2022). When this is considered alongside the current lack of education and investment in district nursing leading to a national staffing shortage (Queen's Nursing Institute (QNI), 2019), together with the cost-of-living crisis, pushing more people into poverty, it is an urgent time to consider what the future looks like for carers.
Pancreatic cancer
Pancreatic cancer most commonly occurs in the exocrine glands of the pancreas as a malignant tumour (Peate, 2019). The cause of pancreatic cancer is poorly understood, although certain risk factors have been identified including smoking, diabetes mellitus, obesity and, in rare cases, genetic conditions (Ilic and Ilic, 2016). It is the 9th most common malignancy in the UK, with around 10 000 new cases being diagnosed each year (Public Health England, 2021). In 80% of cases, pancreatic cancer is diagnosed late, which means that the cancer has metastasized and is incurable (Strobel et al, 2019). Even in small subset who are diagnosed early and eligible for surgical resection, only 20% survive more than 5 years (Siegel et al, 2016).
Patients and family members often describe pancreatic cancer as burdensome, debilitating and highly distressing (Tang et al, 2018). Common symptoms include severe pain, fatigue, and insomnia (Peate, 2019), as well as exocrine insufficiency (where not enough digestive enzymes are produced) leading to discomfort after eating, as well as bloating and weight loss (Gooden and White, 2013). Pancreatic cancer patients are significantly more likely to experience clinically elevated levels of anxiety and depression, as well as a reduced quality of life (Janda et al, 2017).
The experiences and subsequent needs of carers are different to the needs of patients. Carers are known to take on more responsibilities, guilt and anticipatory grief. In the case of pancreatic cancer, there is little data widely available regarding this population's demographics, experiences or needs, with relevant UK research identified (on CINAHL, Embase Classic, ERIC, Medline, and PsycInfo), as well as on charity websites (such as Cancer Research UK, Macmillan, Marie Curie, Pancreatic Cancer Action, UK, Pancreatic Cancer Research Fund and Pancreatic Cancer UK). It is reasonable to assume, based on the cancer's characteristics, that many pancreatic cancer carers may suddenly take on caring responsibilities for terminally ill family members with severe and distressing symptoms. Therefore, they have limited time to adapt, learn and come to terms with their emotions before their relative dies.
All current published research on this group is based on groups of carers outside the UK. Kim and Baek (2022) synthesised available qualitative and quantitative studies from the US, Australia, Sweden and Denmark. The review demonstrated that pancreatic cancer carers take on multiple conflicting responsibilities, while being equipped with limited information (Kim and Baek, 2022). As a result, carers experience significant emotional trauma (Kim and Baek, 2022). However, it is unclear how these experiences differ for carers reliant on support and information from NHS healthcare professionals and systems and local authorities. Yet, the review excluded carers of those with terminal pancreatic cancer. The authors explained that carers of terminally ill patient's face ‘unique difficulties’, thus excluding, arguably, most of this carer population and the generalisability of the conclusions.
Further cross-sectional research from outside the UK identified this group of carers as having an increased vulnerability of mental health disorders. A study from Australia found increased levels of clinical anxiety compared to both general population and pancreatic cancer patients themselves (Janda et al, 2017). Similarly, family members in Denmark were found to be more likely to develop depression for up to 5 years after the initial diagnosis, than the general population (Dengsø et al, 2021). It is not known to what extent this is applicable to the UK, and how NHS mental health services here may or may not play a role.
The overall lack of research into pancreatic cancer carers reflects the general lack of research into this cancer type in the UK (Pancreatic Cancer UK, 2023). The Less Survivable Cancers Taskforce (2019) published a report showing the UK government allocated less than 7% of its funding to the least survivable cancers. Inequality in cancer research is a long-standing issue, with higher burden cancers not receiving fair funding (Carter and Nguyen, 2012). Instead, cancers with better outcomes receive more research funding, resulting in superior outcomes and a greater disparity (Less Survivable Cancers Taskforce, 2019). Pancreatic cancer has significantly less research than comparatively more survivable cancers (Carter and Nguyen, 2012). The impact of these funding decisions appears to filter down to all research, including carers' research, where other cancer carer groups have far more published research than pancreatic cancer (Sherman et al, 2014).
The prevalence of pancreatic cancer is estimated to continue rising worldwide, particularly in countries with aging populations like the UK (Klein, 2019). The available international research would infer that this is a group that requires deeper understanding and improved professional support, especially as the disease is usually brief, terminal and has severe accompanying symptoms. Caring for someone with pancreatic cancer is likely to be an incredibly distressing and difficult time, with a significant psychological long-term impact.
Healthcare professionals
Nurses are often the professional group with the most contact with cancer carers (Argyle, 2016). Therefore, they have a fundamental role to play in identifying, supporting and referring carers. Community and district nurses visiting the homes of patients with pancreatic cancer often will have a privileged insight into the caring dynamics within a home. An awareness around the specific challenges of pancreatic cancer is vital for providing timely, effective support.
Identifying carers can be a huge challenge within itself. Community nurses have access to guidelines such as the QNI's standards for district nurses (QNI, 2015), which explicitly confirms carers are a vital aspect of community care. However, with limited resources and high workloads many community nurses may struggle to meet these standards. In the case of pancreatic cancer carers, this must also be considered alongside the median life expectancy from diagnosis, which is 4.6 months (Carrato et al, 2015). Therefore, it is especially urgent that this group of carers are identified early on and their needs anticipated. This includes documenting this information and proactively sharing with relevant parties, such as GPs and palliative care teams.
Community nurses can educate and provide emotional support to carers. Carers with the right information and emotional support can be a paramount part of the team caring for patients (Connolly and Milligan, 2014). With tailored education, carers can be confident in their abilities to provide safe, recommended support and seek further professional guidance when appropriate (Gerhardt et al, 2020). Early education around what to expect during pancreatic cancer, medication and symptom management, could help prevent families reaching a distressing crisis point with a patient's illness (Connolly and Milligan, 2014). Consequently, informed carers have the potential to improve the quality of life for patients (Hasson et al, 2009) and reduce emergency department and hospital admissions (Given et al, 2008), as well as offering compassion, kindness, and carers the opportunity to be heard. Within palliative care, simple questions such as ‘How can we help?’, can open up conversations around how carers are coping and what their needs are (Ross and McSherry, 2018).
Finally, nurses in the UK have a duty to refer carers who have further needs onto appropriate services, whether these are for further professional, financial or emotional support. In the UK, all carers have a right to a carers' assessment through the local authority (UK Legislation, 2014). This aims to anticipate needs and prevent them from becoming unmanageable (UK Legislation, 2014). For this to work effectively, healthcare professionals need to be educating, signposting and supporting carers to request an assessment (Argyle, 2016). Carers would likely benefit from community nurses who direct and encourage them to access local in-person support, such as those organised by the voluntary sector. They also could benefit from nurses highlighting the national support available, such as the charity Pancreatic Cancer UK's (2023) support line staffed by specialist nurses offering bespoke advise and emotional support.
Little is known about the impact of pancreatic cancer on UK carers and the extent to which healthcare professionals and systems within the NHS are supporting this group. However, it is likely that due to the disease's rapid decline, many are not receiving timely and effective support. Community nurses and healthcare professionals would benefit from evidence-based guidance and resources to guide their practice, and better care for the vulnerable group.
Key points
- Pancreatic Cancer patients often have a short life expectancy and high disease burden; therefore, early identification, support and intervention for both patients and care needs is crucial
- Community nurses often have a unique insight into informal carers and family members around patients and the individual challenges these families face
- Very little is known about pancreatic cancer cares in the UK's experiences; therefore, services and professionals within the NHS have limited information to guide their practice.
CPD reflective questions
- What does the World Health Organization say healthcare professionals should be doing for family members of patients?
- Reflect on the experiences of family and carers of people with pancreatic cancer; how are these similar or different to the experiences of individuals caring for other patient groups?
- How can you ensure pancreatic cancer carer's needs are better supported in your own clinical practice?