In palliative and end-of-life care, the management of symptoms and the provision of psychological, social, and spiritual support are paramount (World Health Organization (WHO), 2020). In addition to the common symptoms of pain, breathlessness and fatigue, all of which can adversely affect dietary intake, a range of physical and metabolic effects associated with the underlying disease and its treatment, can also negatively impact on an individual's ability to eat and drink, predisposing them to an increased risk of malnutrition along with its associated consequences, such as infections, poor wound healing and reduced activity (Hébuterne et al, 2014; Khorasanchi et al, 2022).
With the reduced ability to eat and drink secondary to physiological and metabolic issues (cachexia – muscle wasting secondary to disease-related inflammation), and loss of enjoyment and desire to eat, diet frequently becomes a source of psychological stress and anxiety (Hopkinson, 2006a; 2006b; Amano et al, 2022). If feasible and acceptable to patients and carers, there exists a sound clinical rationale for the use of timely interventions to modify diet to alleviate symptoms and maintain nutritional status to optimise quality of life, physical functioning, immunity, and wellbeing (Shaw and Eldridge, 2015; Arends et al, 2017; Amano et al, 2019; Hopkinson, 2021).
Palliative care focuses on living well with life-limiting conditions such as incurable cancer, but also seeks to prepare individuals and their families for a good death. Although the terms ‘palliative care’ and ‘end-of-life care’ are often used interchangeably, palliative care describes care that is supportive and focused on improving the quality of life of individuals and their families through impeccable assessment to identify issues associated with life-limiting and life-threatening illness that can be relieved. Nutritional care should be considered an integral component of care (National Institute for Health and Care Excellence (NICE), 2004)
End of life is a continuum of palliative care used to describe the care that is offered during the period when death is imminent, or remaining life is likely to be a short number of weeks, days or hours (NHS website, 2022). In the last few weeks of life, attention is directed towards the patient's comfort and the focus of nutrition may change, with less emphasis on the need to meet nutritional requirements. Understanding the stage at which an individual lies in their journey is important as it can determine how proactive one should be in providing, for example, nutritional support and meeting nutritional requirements, balanced against managing anxiety and distress associated with eating and drinking when seeking to maintain an adequate intake of nutrition and fluids.
Integrating nutrition into palliative care
Many patients experience profound symptoms during and after cancer treatment, which may result from the local effects of the cancer itself, the metabolic response to the cancer, including cachexia, and the treatments used (such as chemotherapy, radiotherapy, immunotherapy and surgery). These treatments may be given with palliative, as opposed to curative, intent and the resulting symptoms can impact on an individual's ability to eat and drink and have a severe effect on nutritional status well into the palliative phase (Tong et al, 2009; Deshields, 2014; Andreyev et al, 2017; Arends et al, 2017; Grace et al, 2018; Sullivan, 2021).
Diet-related issues, also referred to as nutrition-impact symptoms (Khorasanchi et al, 2022) that interfere with an individual's ability to eat and drink can arise at any time during the pathway of cancer care and persist into the palliative phase of care. When concerns relating to dietary issues are not properly assessed and addressed, they become a significant source of distress (Souter, 2005; Hopkinson et al, 2006b; Hopkinson et al, 2010; Baile et al; 2011, Hopkinson et al, 2013; Planas et al, 2016; Amano et al, 2019). With many patients now living with cancer, and the palliative phase extending to months and years, an individualised approach to nutrition in cancer and palliative care is being encouraged (Arends et al, 2017; Ravasco, 2019). Indeed, the European Society for Parenteral and Enteral Nutrition (ESPEN) guidelines (Muscaritoli et al, 2021) provide a clear guide to the role of nutrition in cancer and palliative care and cite the range of symptoms that may be amenable to dietary modification and nutrition support, including lack of energy, fatigue, appetite, nausea and constipation. Figure 1 provides a schematic summary of an approach that can be adopted in nursing practice to identify and manage diet-related issues in palliative care.
Despite recommendations that dietitians should be part of the multidisciplinary palliative care team to help support patients in the palliative phase of illness (NICE, 2004), the number of dietitians employed within a palliative setting remains limited (Pinto et al, 2016). Work is under way to improve access to dietitians, including in the community (British Dietetic Association, 2020). In the interim, however, with insufficient dietitians to enable timely access for all affected, patients and family members often seek advice from the nurses on managing diet-related issues. As a consequence, knowing what to look for and how to manage issues, is important for the multidisciplinary team and particularly nurses, to direct care that is relevant to the specific needs of patients and families (Ravasco, 2019).
To provide care that is perceived as helpful and beneficial to patients, it is crucial in practice to accurately identify patients' concerns through an in-depth assessment, as only by doing so can they be adequately addressed, alleviated or contextualised (Souter, 2005; Homsi et al, 2006; Hopkinson et al, 2013; Czerwinska et al, 2016; Amano et al, 2019; WHO, 2020).
Nutrition screening is considered the first step in determining those deemed to be at risk of malnutrition. One would then undertake a further assessment to identify the issues interfering with intake and that are amenable to dietary modification to improve nutritional intake and alleviate nutrition-impact symptoms and the associated distress (Arends et al, 2017). In everyday practice, a range of barriers, including lack of time and knowledge, can impede the successful implementation of screening for malnutrition (Czerwinska et al, 2013; Laur et al, 2015; Harris et al, 2019). To overcome the barriers, the importance of screening for malnutrition and the value of alleviating eating-related distress and anxiety relating to unintentional weight loss needs to be recognised (Cooper et al, 2015; Souter et al, 2016; Flynn et al, 2018; Sullivan, 2021).
Identifying diet-related issues and malnutrition: a framework for palliative care
In response to NICE guidance CG32 (2017), the Care Quality Commission and NHS contract requirements, care providers have sought to integrate nutrition screening into care settings including hospices. In many acute and primary care settings in the UK, the Malnutrition Universal Screening Tool ‘MUST’ (Elia, 2003) is used to identify the risk or presence of malnutrition.
In a hospice setting supporting inpatients and outpatients who are at a mid-to-late palliative care stage, as well as those at end of life, a survey, in conjunction with focus groups, identified reticence among nurses in using the ‘MUST’ screening tool for the palliative population (Czerwinska et al, 2013). Although ‘MUST’ is only intended to identify risk of malnutrition, end-users felt all of the patients under the care of the palliative team experienced distress and anxiety in relation to loss of appetite, weight and diet-related issues and, therefore, rather than screen for malnutrition using objective measures that may add to distress, a more bespoke tool to assess nutrition that could help tailor care to those who were at palliative and those at end-of-life stages, was called for.
Supported by a grant from the Foundation of Nursing Studies, subsequent work by Czerwinska et al (2016) was undertaken, with all stakeholders represented across a hospice and outreach centres in the south west of England, to investigate how members of the healthcare team might sensitively identify nutritional issues experienced by patients and their families to guide and deliver individualised nutritional care for inpatients, outpatients and their carers, including those attending both formal support groups such as rehabilitation programmes and informal support groups, such as coffee club. To achieve the objectives, a practice development approach (McCormack et al, 2013) was used. The approach included:
- Staff questionnaires
- Discussion forums involving multidisciplinary healthcare team members, patients, carers, volunteers, and catering staff
- Qualitative interviews with patients/carers
- Evaluation of tools available
- Selection of a preferred nutrition assessment tool
- Testing in practice and iterative refinement.
Discussion forums reconfirmed that most patients were considered at risk of malnutrition and, even in those who were not, nutritional issues that interfered with eating and drinking were likely to be present at some stage in their journey and needed identifying through a structured assessment. A range of existing assessment tools were identified and considered.
The Macmillan Durham Cachexia Patient-Generated Subjective Global Assessment (PG-SGA) tool (Macmillan Cancer Support, 2008) was considered the best tool to identify diet-related issues that were causing anxiety and distress and determine the focus for the nutritional care provided according to the phase of illness.
Following minor adaptations to the PG-SGA, identified through the stakeholder engagement, the ‘Patient Led Assessment for Nutritional Care’ tool was created, evaluated in practice, and compared with a dietetic assessment and ‘MUST’, to ensure that it could identify nutritional risk, nutritional issues and was acceptable to end users. The tool was supported by algorithms to guide appropriate nutritional care according to disease stage (early-to-mid-palliative phase and late-palliative-to-end stage) taking into account anticipated prognosis. As the tool met universal acceptance by the multidisciplinary team and issues identified matched dietetic assessment in a pilot study of 20 patients, the tool algorithms, and monitoring processes were integrated into practice for use by all members of the healthcare team and supported by teaching sessions and a range of dietetic resources with triggers for escalation management to a specialist dietitian when required. Further information on the project is available at https://www.dorothyhouse.org.uk/wp/wp-content/uploads/2021/05/PLANC-Patient-Led-Assessment-of-Nutritional-Care.pdf. Training to enhance knowledge of the PLANC and management of common nutritional problems was put in place and independently evaluated by Healthwatch (a statutory committee of the Care Quality Commission (CQC) in England).
Building on the initial work with stakeholders at the hospice (Czerwinska et al, 2016), further in-depth qualitative research was undertaken with patients and carers receiving palliative care and acute and community-based health professionals providing the care. The aim was to explore the perception of diet in palliative care (Holdoway, 2020). The research, which used a multiple case study methodology (Yin, 2014) involving patients, carers and health professionals, highlighted:
- The complexity of diet-related issues in advanced cancer that arise because of the cancer and its associated treatment
- How disruptions to eating patterns, food choices and the eating experience altered the meaning of food and influenced the patient's and carer's drive to take actions that focused on the preservation of the mealtime experience, routines, physical function and socialisation
- The value of nutrition conversations as a tool to facilitate an understanding of the diet-related issues and what mattered to patients and carers
- The co-creation of solutions achieved through a three-way process involving, at times, the patients, carers and health professionals
- The breadth of strategies co-created and their impact on alleviating or overcoming diet-related issues, including adaptations to food and drink, adjustments to meal routines and acceptance of a ‘new norm’
- How knowledge acquisition, culture and environment facilitated the provision of nutritional care by members of the healthcare team.
Delivering supportive nutritional care in practice
Providing meaningful solutions and advice are an important part of delivering holistic care and yet patients, carers and health professionals continue to report difficulties in accessing information that is credible and practical. To assist nurses, especially those working in hospices and community settings, to identify and manage diet-related issues, including the psychosocial aspects, a range of strategies derived from the doctoral research by Holdoway (2020) and other leading authors, are summarised in Table 1 (Shragge et al, 2007; Bernhardson et al, 2012; Hopkinson et al, 2013; Britton et al, 2015; Cooper et al, 2015; Blödt et al, 2018; Amano et al, 2019; Hopkinson, 2021). Ideas and practical tips for nurses to use in practice, including examples of free-to-access resources on dietary adjustments that may help are summarised in Table 2. Content is derived from the literature and international guidance cited in this article, dietetic practice and doctoral research (Holdoway, 2020).
Table 1. Diet-related issues in palliative care, including physiological and psychosocial factors, barriers, facilitators and solutions
| Problems and barriers | Facilitators and solutions |
|---|---|
| Early satiety, poor appetite, only able to manage small portions or a few mouthfuls, late-stage cachexia |
|
| Weight loss, cancer-related wasting (cachexia) weight being a taboo subject due to fear of not having answers or solutions, feasibility of weight gain and muscle gain |
|
| Overlooking or failing to heed concerns of the patient and carer |
|
| Lack of time to assess for nutrition and diet-related issues |
|
| Ignoring patient requests for information. Failing to acknowledge or observe diet-related or nutrition related problems |
|
| Scepticism as to purpose or role of nutrition. Belief that unable to affect weight regardless of stage of cachexia or point in cancer trajectory |
|
| Dietary modification such as increased fat and snacks viewed as unhealthy |
|
| Limited knowledge amongst healthcare team to deal with diet-related issues |
|
| Overlooking symptoms that can impact on ability to eat and drink and enjoyment |
|
| Treatment effects secondary to radiotherapy or chemotherapy – immediate and latent |
|
| Lack of concordance and varying views regarding the role of nutrition in the healthcare team and amongst the patients and carers (Bozzetti, 2015; Holdoway, 2020) |
|
Table 2. Diet-related issues, dietetic solutions, and examples of freely accessible resources to help in practice
| Physiological problems | Advice and resources |
|---|---|
| Small appetite and early satiety | Eat little and often, nourishing foods, use of nourishing drinks and oral nutritional supplementshttps://www.malnutritionpathway.co.uk/leaflets-patients-and-carershttps://www.royalmarsden.nhs.uk/your-care/living-and-beyond-cancer/eating-well |
| Swallowing problems, dysphagia | Soft moist diet, texture modified dietshttps://www.malnutritionpathway.co.uk/dysphagia.pdf |
| Sore mouth, dry mouth, taste changes | Use of sauces, marinades, trying different, new, and even trying less familiar foods as taste preferences may have changedhttps://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/mouth-problems |
| Weight loss and weakness | High protein nourishing diet combined with paced activity/resistance traininghttps://www.malnutritionpathway.co.uk/library/proteinideas.pdf |
| Cachexia - early, mid, late (Aapro et al, 2014; Arends et al, 2017; Souter, 2016; Amano, 2019; Holdoway, 2020) | Explain in simple terms to those affected how cachexia alters the utilisation of nutrients, body composition and affects appetite and taste. Discuss what is feasible ie late-stage cachexia unlikely to gain weight and muscle even in the presence of adequate nutritionhttps://patient.info/doctor/cachexia#nav-1 |
| Gastrointestinal issues eg, diarrhoea, malabsorption, distension, ascites (Andreyev et al, 2017) | Referral to others eg, gastroenterology for diagnostic tests, pharmacists for medication. See ideas on dietary management of constipation and diarrhoea at: www.malnutritionpathway.co.uk/library/altered_bowel_habit.pdf |
| Fatigue | Planning, pacing and prioritisation (Royal College of Occupational Therapy, 2021)Swapping meals eg cooked breakfast or cooked or larger meals at lunchtime instead of evening (fatigue may be at its worst as the day progresses). Batch cooking and freezing of individual meals that can be warmed through with little further preparation, preparing vegetables and slow cooking when energy is highest eg in the morning. Accepting help with shopping and preparation of meals can ease the tirednesshttps://www.rcot.co.uk/conserving-energy |
| Limited cooking skills and access to shops | Social prescribing, help from friends, family, and neighbours, cook and share dining clubs, advice on easy to produce meals and snacks and use of ready mealshttps://www.cancervic.org.au/living-with-cancer/nutrition/recipes-and-snacks |
Further information and training
A series of webinars have been made available via the Hospice UK website https://www.hospiceuk.org/what-we-offer/clinical-and-care-support/nutrition-in-palliative-care. In addition, the updated guidance Supporting People who have Eating and Drinking Difficulties published by the Royal College of Physicians (De Silva et al, 2021) is an excellent guide to the complexities that can arise around decision-making in the provision of nutrition, including the use of clinically assisted nutrition and hydration (CANH) towards the end of life. This updated version includes a chapter dedicated to oral nutrition support and guidance on when to consider clinically assisted nutrition and hydration such as tube feeding and parenteral nutrition. It also outlines recent changes in the law governing procedures for the withdrawal of CANH and other life-sustaining treatments and presents a series of case studies in practice.
Conclusion
Diet-related issues in palliative care are complex and for nurses and other health professionals to deal with them effectively, a range of skills are required, including a desire and motivation to understand and be receptive to the patient's desires and the carer's frustrations. This article has sought to highlight the range of issues that can arise and provide ideas, practical tips and diet resources that nurses can use in everyday practice to help individuals and families deal with the issues and reduce the burden of symptoms. Applying the principles outlined in this article in practice, to support individuals and their families deal with diet-related issues, is not without challenges.
Additional training may be required to improve skills in this area and nurses are encouraged to connect and seek advice and further training from dietitians, nutrition support teams and specialist palliative care teams in their own localities.
To optimise nutritional care, the holistic assessment of patients following diagnosis should incorporate ongoing assessment of nutrition and dietary issues across the continuum of care and especially when new symptoms or diet-related issues arise. Tools to guide nutrition assessment and nutritional care in palliative care are emerging but require further validation, along with research to measure the effectiveness of tools used in identifying the issues that matter to patients and their families and the impact of subsequent nutritional care provided.
Understanding the changed meaning of food to the individuals affected, combined with a desire to maintain a degree of normality around eating and drinking, should underpin approaches to support patients and carers to help them deal with the challenging dietary situations in the palliative phase of illness and achieve adjustments necessary to help them live life to the full.
Nurses, dietitians and other members of the multidisciplinary team, can seek to optimise outcomes by working together and learning from each other. In this way they can provide individualised care for those affected through listening to the patient and carer experience.
KEY POINTS
- To deal appropriately with the diet-related issues and appetite loss in palliative and end-of-life care, health professionals must understand the patient's perspective about food and nutrition as a key starting point
- The effects of malnutrition and diet-related issues experienced in the palliative phase of cancer can have profound and detrimental effects on an individual and their families. Dietary counselling has the capacity to alleviate anxiety and symptoms
- Tools based on the Patient-Generated Subjective Global Assessment to assess the presence of diet-related issues and guide conversations regarding nutrition are available but require further validation
- Nutrition support when indicated and appropriate should be tailored to the individual and managed by those with the knowledge and experience of methods of feeding, ensuring feeding regimens are tailored to the individual and fit with patient and family routines that may change over time
CPD reflective questions
- How might you build in a nutrition conversation into your consultation with a patient experiencing eating difficulties and engage with their family or others involved in their care?
- Consider how you might sensitively discuss the issue of weight, weight loss and changes in taste and appetite in patients with late-stage cancer cachexia to deal with guilt and frustration
- Is there a tool you could consider integrating into your care setting to facilitate the identification of diet-related issues and tensions that warrant exploring and require support?
- Do members of your team need further training on identifying and managing diet-related issues to support patients in the palliative phase of illness and their families?