Nutrition in palliative and end-of-life care.

NUTRITION AND PALLIATIVE CARE

Nutrition in palliative and end-of-life care Loraine Gillespie, Anne-Marie Raftery

Loraine Gillespie, Dietetic Manager and Specialist Oncology Dietitian, Anne-Marie Raftery, Macmillan Clinical Nurse Specialist in Palliative Care, The Christie NHS Foundation Trust, Withington, Manchester Email: [email protected]

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atients’ need for supportive and palliative care may go unrecognised by health-care professionals (National Cancer Action Team, 2009), with nutrition and hydration a vital aspect of care that can often be overlooked (Lecko, 2013). Issues surrounding nutrition and hydration have recently been publicly highlighted through the serious failings at Mid-Staffordshire Hospital (Francis, 2013), where patients were denied appropriate nutritional care. Family members/carers also raised serious concerns around aspects of nutrition and hydration when loved ones were cared for using the Liverpool Care Pathway for the Dying Patient (Neuberger et al, 2013). These examples of poor nutritional practices not only affect the patient’s nutritional status, but can also significantly affect morbidity and mortality (Vigano et al, 1994). The National Institute of Health and Care Excellence (NICE) (2004) guidance for supportive and palliative care proposed a model of rehabilitation for assessment and support, which recommended that those who provide day-to-day care (general nursing staff) should be able to assess patients’ basic needs and initiate appropriate basic interventions. Therefore, all health-care professionals have a responsibility to assess and address the nutritional needs of patients at all stages of their illness, as proposed by the National Cancer Institute (NCI) (2014). In order to outline the specific aspects of nutrition in advanced cancer, it is first necessary to separate the terminology and clearly define supportive, palliative and endof-life care in this context.

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Supportive care Supportive care as defined by the Multinational Association of Supportive Care in Cancer (2013) is the prevention and management of the adverse side effects of cancer and its treatment, from diagnosis through to end-of-life care, encompassing the alleviation of symptoms and the complications of cancer while easing the emotional burden of patients and caregivers. As NICE (2004) suggests, supportive care is an umbrella term for all services that may be required and is based on an assumption that there are needs from diagnosis onwards. Palliative care is part of supportive care and embraces many elements of supportive care as proposed by NICE (2004).

Nutrition, July 2014

Definition of palliative care Palliative care as defined by the World Health Organization (2002) is an approach that aims to improve the quality of life of patients and their families who are living with a life-threatening illness through the prevention and relief of suffering, early identification and relief of pain and other distressing symptoms, using a holistic approach focusing on physical, psychosocial and spiritual aspects. It both affirms life and regards dying as a normal process. It is now widely accepted that palliative care is often applicable much earlier in the course of a life-threatening illness and not merely reserved for patients with a cancer diagnosis or those who are imminently dying (Department of Health, 2000; National Council for Hospice and Specialist Palliative Care Services, 2002; NICE, 2004; NCI, 2013). Endof-life care encompasses both supportive and palliative care and focuses on care, not only of patients in the final hours or days of life, but, more broadly, on care of all those with a terminal illness that has become advanced.

Definition of end-of-life care The definition of end-of-life care is currently being debated in response to the criticisms around the Liverpool Care Pathway for the Dying Patient (Neuberger et al, 2013). The

Abstract

Recent publications regarding nutrition highlight the importance of eating and drinking for patients and their family/carer. This article focuses on the importance of nutrition and early nutritional intervention, giving guidance for nurses when caring for patients with palliative and end-of-life care needs when the focus of nutrition centres around symptom control and quality of life. Clear, sensitive communication, with agreed nutritional goals set with the patient and their family/ carer, and regular review and adaptation throughout any ‘cancer journey’ are paramount in order to minimise anxiety and distress. A multidisciplinary team approach is often required in order to support ethical decision-making and to assist in devising an individualised nutritional management plan. Although this article aims to focus upon the nutritional aspects associated with advancing cancer, many aspects will clearly be transferrable to patients with other lifelimiting illnesses such as dementia and advanced cardiac and pulmonary disease.

KEY WORDS

w Palliative w Nutrition w Support w End of life w Ethics w Quality of life

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Importance of nutrition Nutrition should be considered an integral part of the patient’s ‘cancer journey’, from diagnosis through to the end of life, for all disease sites and should form part of symptom control (National Cancer Action Team, 2009). However, malnutrition is common in cancer patients (Ravasco et al, 2003), with many experiencing specific nutritional problems relating to food and weight loss. The cause is often multifactorial, ranging from the site(s) of disease, side effects of treatment, ‘cancer cachexia syndrome’, depression and anxiety, and symptoms including pain (Shaw, 2011). However, iatrogenic factors relating to illness caused by medical examination or treatment can also contribute, including periods of being ‘nil by mouth’, the patient being unable to feed themselves, or if meals are missed. Socioeconomic factors affecting a patient’s ability to take adequate nutrition will be compounded, particularly if they are no longer able to work or afford foods considered to be the ‘healthier option’. In order to endure treatments with curative intent, an individual’s ability to maintain adequate nutrition and hydration are therefore of significant importance in relation to long-term survival (Dewys et al, 1980; NCI, 2014).Weight loss and malnutrition are also associated with poor response and reduced tolerance to treatment, poor wound healing, muscle function and immune response (Elia et al, 2006; Bozzetti et al, 2009). While the aim of cancer treatments such as surgery, chemotherapy and radiotherapy are intended to both extend and improve quality of life, their effects can significantly affect an individual’s physical and psychological wellbeing. In the context of palliative and end-of-life care, anti-cancer therapies are often considered arduous treatments that can significantly affect a person’s quality of life. Although symptom control, including the management of pain, are often focused on, nutritional difficulties encountered by patients with advancing disease may be overlooked or considered inevitable (National Cancer Action Team, 2009; NCI, 2014). Symptoms such as altered taste, nausea, vomiting, early satiety, diarrhoea, constipation, gastrointestinal obstruction, malabsorption and anorexia—attributed to the side effects of treatments and the illness itself—will all clearly affect the patient’s ability to take oral nutrition and ultimately affect their quality of life. It is therefore imperative that these are addressed and managed appropriately in patients who have palliative and end-of-life care needs (NCI, 2013).

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Cancer cachexia Cancer cachexia is common in advanced cancer, particularly lung and upper gastrointestinal malignancies, and is characterised by anorexia and metabolic derangement. Fearon et al (2011, p. 489) defines cancer cachexia as:

‘A multifactorial syndrome defined by an ongoing loss of skeletal muscle mass (with or without loss of fat mass) that cannot be reversed by conventional nutrition support and leads to prolific functional impairment. The pathophysiology is characterised by a negative protein and energy balance driven by a variable combination of reduced food intake and abnormal metabolism.’ The European Palliative Care Research Collaborative (EPCRC) (2010) has agreed that cachexia syndrome progresses through three distinct stages: precachexia, cachexia and refractory cachexia, based on a patient’s clinical characteristics (Fearon et al, 2011). It is important to highlight that cancer-associated weight loss is different to weight loss from malnutrition, due to the different responses in metabolic pathways. Weight loss for patients with refactory cachexia, particularly in the advanced stages of disease, is often minimally responsive to nutritional support. Patients may appear to be eating adequate calories and protein, but, due to tumour-related factors, this prevents maintenance of fat and muscle, resulting in weight loss (EPCRC, 2010). Cachexia can cause a great deal of concern and upset for both the patient and their family/carer at the end of life, as clear indicators of declining health and fragility become ever more apparent due to involuntary weight loss, anorexia, fatigue and loss of muscle mass, which can subsequently affect the patient’s quality of life (NCI, 2013). Hence, the need for earlier nutritional screening and intervention throughout these distinct stages and their impact on quality of life will now be explored in further detail.

Nutritional screening tools Early nutritional screening and intervention has been suggested to have positive effects on quality of life (Huhmann and Cunningham, 2005). It is therefore important that nutritional goals are set and agreed with the patient and their family/carer, and regularly reviewed along the ‘cancer journey’. The focus of nutritional management in the context of advanced cancer often centres on symptom control and comfort measures, which are important to address, modify and communicate particularly as the patient approaches the end of life. While many health-care settings use the BAPEN (2011) Malnutrition Universal Screening Tool (MUST) tool, this does not incorporate nutrition-related side effects from the disease or anti-cancer treatments. Currently there is no universal validated nutrition screening tool available for use in oncology. This calls for more research into the development of a validated nutritional tool for use in both oncology and palliative/end-of-life care.


fact that end-of-life care can mean any period—between the last year of life of a person with a chronic and progressive disease to the last hours or days of life—could clearly be open to misinterpretation given this diverse continuum. For the purposes of this article end-of-life care will therefore be interpreted as being in the last months to weeks of life in order to separate this distinct phase and provide clarity. The importance of nutrition will now be considered in the context of palliative and end-of-life care.




However, it is still important to screen patients across the various health-care settings, as stated by the National Collaborating Centre for Acute Care (2006), using a locally agreed tool, with health-care professionals being aware of the impact of nutrition-related symptoms and able to address them accordingly. Aspects of nutritional management to consider will now be discussed further.

Nutritional management

Symptoms affecting dietary intake can be related to chemotherapy, radiotherapy, surgery, drugs or the disease itself. Identification of symptoms affecting dietary intake should be identified and appropriately managed, with dietary advice given to help improve and minimise symptoms. Symptoms can range from a dry or sore mouth, altered taste changes, nausea and vomiting, early satiety due to ascites and dysphagia (see Table 1).

Oral nutrition support

Use of fish oils

Provision of oral nutrition and hydration should be considered as basic care, with an individualised approach required for dietary intervention, identification and assessment, such as the use of pain control around mealtimes. It is also important to identify any patient preferences, dietary food restrictions and religious/cultural preferences. For patients who are struggling to maintain their weight and/or have a reduced dietary intake, the use of energy and nutrient-dense foods can help to optimise nutritional intake (The Christie NHS Foundation Trust, 2012; Macmillan, 2012) (see Box 1). Some patients, such as those with diabetes, may need to relax their diet, particularly if they are not eating well and losing weight. It is therefore important to communicate to the patient that it is about balance (trying to ensure the body receives the nutrients it requires at that time) and compromise (finding certain types of food that they are happy to eat more of). If patients are unable to meet their nutritional needs through diet alone, then the use of nutritional supplements may be of benefit, increasing nutritional intake and improving quality of life (Baldwin et al, 2012). Advice should also be given on how to take them, as patients should not be made to feel guilty, particularly if they are unable to tolerate or consume the amount required.

In recent years there has been some interest in the use of therapeutic doses of omega-3 fatty acids for use in cancer cachexia, which were thought to downregulate the production of pro-inflammatory cytokine production (Barber et al, 1999). However, research carried out in advanced pancreatic patients (Fearon et al, 2003) failed to demonstrate any clear benefits. The limitations of the research included small numbers of patients recruited to the study and issues around patient compliance with taking omega-3 fatty acids. A review carried out by EPCRC (2010) found insufficient evidence on the benefit of omega-3 fatty acids in advanced cancer and recommended that further studies be undertaken. The role of artificial nutrition support and the ethical considerations and communication skills required will now be explored in further detail.

Use of nutritional supplements


Dietary symptom management

While there have not been any previous studies examining the use of oral nutritional supplements solely in cancer patients, the use of nutritional drinks is often recommended (see National Collaborating Centre for Acute Care, 2006) to support the patient when they are not meeting their nutritional requirements through food fortification alone. Nutritional supplements are available in ready-made or powdered form and range from drinks, puddings or concentrated sources of energy and/or protein supplements. Nutritional composition can vary from energy, protein, fibre, vitamin, mineral, electrolyte, lactose and concentration. They can be bought over the counter, such as Build-up (Nestlé) or Complan, whereas others have to be prescribed. Nutritional supplements can be milk/yogurt-based or juice tasting. Juice-based drinks can be higher in sugar and, therefore, for patients with diabetes, they should be used carefully under the guidance of a registered dietitian. For patients with a sore mouth, juice-tasting drinks may not be suitable as they may sting. Manufacturers also provide advice and recipes on how they can be consumed to avoid taste fatigue and help palatability.


Role of artificial nutrition support and ethical considerations When oral nutritional intake deteriorates, it can raise ethical tensions around when and if to consider alternative methods of artificial feeding. This requires the ethical principles of beneficence, non-maleficence, futility and resource allocation to guide this decision-making process (Beauchamp and Childress,

Box 1. Oral nutrition support advice Encourage small meals and snacks Don’t overface with large portions Encourage to eat in company of others Try to make food as nourishing as possible through the use of: 1. Milk and dairy products:

w Adding grated cheese to sauces, potato, soups w Fortifying milk using milk powder—4 tablespoons to 1 pint of whole milk and adding this to drinks and foods

w Encouraging full cream milk and yogurts w Milky drinks 2. Use of fats:

w Adding extra butter or margarine to foods w Cream, cream cheese, crème fraiche, mayonnaise 3. Use of sugar, jam, marmalade, lemon curd, honey or syrup to cereals, drinks or desserts Source: Christie NHS Foundation Trust (2012); Macmillan (2012)

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Table 1. Dietary symptom management Dry mouth (xerostomia)

Early satiety

Soft moist foods—plenty of sauces/gravy

Eat small frequent meals /snacks

Sip drinks frequently, especially with meals Use of ice cubes or lollies

Cold food and drinks, e.g. yoghurt, ice cream, fruit fool and iced drinks can be easier to take

Suck strongly flavoured pastilles or mints

Eat slowly and chew foods well

Sharp flavours e.g. pineapple

A little gentle exercise, e.g. a short walk after meals can be helpful

Use of mouth-care products

Avoid foods that cause wind such as fizzy drinks, cabbage, cucumber, onions and pickles—can make patient very full and bloated

Hypercalcaemia

Peppermint cordial or mints can help with wind

Do not restrict or reduce dietary sources of calcium—this is not recommended Encourage carbonated drinks

Avoid taking drinks with food or just before meals Rich or fatty foods can delay gastric emptying and increase feeling of fullness

Sore mouth (mucositis)

Constipation

Avoid foods that will hurt or irritate:

Increase fluid intake

Salty or spicy foods Acid fruits and juices such as oranges, grapefruit and tomato Coarse or dry foods such as crisps, toast and dry biscuits Alcohol

Increase fibre rich foods only if the patient is not at risk of bowel obstruction. Care must also be taken if patients have a poor appetite Diarrhoea

Check sensitivity to food temperatures

Encourage wide variety of foods

Consider use of mouth gels

Regular fluids

Analgesia pre meals

Consider use of anti-diarrhoeal medications

Taste changes Keep mouth fresh and clean with good mouth care and encourage fluids Make food as attractive as possible Concentrate on foods patients enjoy even if they are different from your usual favourites—don’t eat foods that taste unpleasant Having sharp-flavoured or fizzy drinks and fruits may stimulate taste buds. Herbs and spices add flavour, but be careful if mouth is sore Savoury foods may taste better than sweet ones. If red meat tastes unpleasant, replace it with fish, chicken, turkey, eggs or dairy produce such as milk, cheese and yogurt. Pulses such as peas, beans and lentils may also be useful. Soaking or marinating meat in fruit juice or wine before cooking may improve the flavour. Cured meats such as ham may taste better Sip drinks through a straw—this may cut down unpleasant tastes For metallic tastes use plastic or glass utensils Sugar-free mints or gum may help to overcome metallic tastes Difficulty swallowing (dysphagia) Use of soft, moist foods If patients are at risk or showing signs of aspirating, referral to speech and language therapist would be advised

2001; NCI, 2013). Clearly, for some patients, artificial nutrition may prove to be beneficial, but for those who are in the terminal phase of their illness this may not be considered to be an appropriate measure. In fact, for those patients with refactory cachexia where weight loss is irreversible due to cancer, the burdens and risks of aggressive nutritional support are likely to outweigh any potential benefit (EPCRC, 2010; Fearon et al, 2011).

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Thus, ethical decisions relating to risks and benefits need to be carefully considered (Baracos, 2013).Indeed, a Cochrane review (Good et al, 2014) states that there is ‘a lack of evidence to make recommendations for practice in palliative patients’. The evidence for the role of parenteral feeding in advanced cancer is also poor, due to the lack of randomised controlled trials, possibly due ethical issues around randomising parenteral versus non-parenteral feeding in patients with advanced cancer.


Source: Christie NHS Foundation Trust (2012); Macmillan (2012)




Conversely, European Society for Clinical Nutrition and Metabolism (ESPEN) guidance (Bozzetti et al, 2009) stipulates that parenteral feeding should only be used for those with a non-functioning gut, or where access to the gastrointestinal tract for enteral feeding is not possible, as with bowel obstruction or intestinal failure.

Home parenteral nutrition Home parenteral nutrition may be a consideration for patients who cannot be fed orally or enterally, and in situations where they are more likely to die of starvation rather than tumour progression, such as a patient with ovarian cancer in total bowel obstruction (Bozzetti et al, 2009). However, the fact that home parenteral nutrition is not routinely provided in all localities means that the practicalities of organising transferance of care from hospital to a home/hospice setting may prove to be a significant stumbling block in providing end-of-life care across community settings.

Enteral feeding


Earlier ESPEN guidance (Arends et al, 2006) also recommended that if a patient had a life expectancy of several weeks or months, then enteral feeding could be considered on an individual basis after discussion with an oncologist who has an understanding of the disease trajectory. It would therefore seem reasonable that if enteral feeding improves a patient’s quality of life, then this should be accounted for, which calls for a multidisciplinary team approach to be adopted in order to support the individualised nutritional management plan and ethical decision-making that would be required to weigh up the benefits and risks/burdens. The benefits of artificial nutrition may include prevention of further deterioration in nutritional and fluid status, increased life expectancy, improved sense of wellbeing, quality of life or improved functional status. Burdens to consider are risks associated with enteral tube or central line insertion, infection risk, increasing symptoms with feeding (fluid overload, gastrointestinal symptoms) and prolonged hospital admission (Morss, 2006; Dorner et al, 1997; NCI, 2013). The patient and their family/carer clearly need to be involved and informed of the benefits and risks before any decisions are made (General Medical Council, 2010). The importance of clear, sensitive communication with agreed nutritional goals set with the patient and their family/carer, and regular review and adaptation throughout the ‘cancer journey’ is therefore paramount in order to minimise anxiety and distress.

Communication skills in relation to nutrition Food matters to patients and their family/carers and can often cause a great deal of tension and opinion in relation to what exactly the patient is consuming (Holden, 1991; Poole and Froggatt, 2002), particularly if food is refused or minimal amounts are consumed. It can also cause a great deal of anxiety for family/carers, who often use food as an


expression of love and concern for their loved one. Equally, the patient can feel guilty for not eating the food prepared, or experience fear and dread from the associated symptoms affecting their ability to consume food and thus avoid food as a means of control. Health-care professionals need to be sensitive to these aspects, particularly when having discussions around food and weight loss. It is important to explore and clarify food-related issues, including what food means for that patient, which in turn may lead to clear decision-making and improved patient and carer satisfaction (Back and Arnold, 2005). In addition, national guidance and support on nutrition and hydration for health-care professionals (Neuberger et al, 2013) will be a welcome addition for staff caring for patients at the end of life across health-care settings and will assist with sensitive conversations about nutrition and hydration during what can be a distressing and difficult time.

The end of life In the dying phase, a patient’s desire to eat and drink often lessens, which can cause distress to the family/carer. This has received much public scrutiny in the media in receently with respect to the provision of nutrition and hydration (Neuberger et al, 2013; Francis, 2013). The Independent Review of the Liverpool Care Pathway (Neuberger et al, 2013) reported that there were some situations in which patients were ‘put on the “Liverpool Care Pathway”’ and automatically had their nutrition and hydration withdrawn. The family/carer’s distress was further compounded when patients who were at risk of aspiration had their fluids withheld when they were actually thirsty. The panel reported that there is no clinical justification for denying a dying patient a drink, unless doing so would cause more distress. A recommendation from the review (Neuberger et al, 2013, p. 28) states that there is

‘a duty on all staff to ensure that patients who are able to eat and drink should be supported to do so, unless they choose not to’. Furthermore, it is important to consider the appropriateness of continuing any artificial nutrition intervention if it has already been started. The Royal College of Physicians (2010) add that clear reasons must be identified for withdrawal, along with discussions with the patient, family and health-care professional. Cultural differences also need to be accounted for, particularly if this differs from medical opinion (General Medical Council, 2010).

Conclusion Nutrition has an important role to play in supportive and palliative care, from diagnosis through to end-of-life care. Early nutritional screening and nutritional intervention should be carried out across all health-care settings (NICE, 2006), with agreed nutritional goals set with the patient and their family. Goals should be reviewed and adapted during the ‘cancer journey’, in order to minimise anxiety and distress. A

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multidisciplinary team approach should be adopted in order to support the nutritional management plan and ethical decision-making that should take place on an individual basis. The role of the community nurse is paramount in early identification of malnutrition, undertaking nutritional screening and advising/supporting those patients who are identified at risk (Patients Association, 2011). The focus of nutrition in palliative and end-of-life care often centres around symptom control and quality of life, with aggressive nutritional support often not being appropriate towards the end of life (EPCRC, 2010). Further research on nutrition and its relation to quality of life is required, while recognising the ethical limitations of randomised controlled trials in this context. The patient experience is paramount, which requires health-care professionals across primary and secondary care to fully engage with patients and their families in order to assess patient satisfaction. This will provide some assurance that high-quality, individualised care is being delivered. In addition, national guidance and support on nutrition and hydration for health-care professionals is required in endof-life care, which will assist with the sensitive conversations required to patients and their family/carers during a very distressing and difficult time. BJCN Arends J, Bodoky G, Bozzetti F et al (2006) ESPEN Guidelines on Enteral Nutrition: non-surgical oncology. Clin Nutr 25(2), 245–59 Back AL, Arnold RM (2005) Dealing with conflict in caring for the seriously ill: ‘It was just out of the question’. JAMA 293(11): 1374–81 Baldwin C, Siro A, Ahern R, Emery PW (2012) Oral nutritional interventions in malnourished patients with cancer: a systematic review and meta-analysis. J Natl Cancer Inst 104(5): 371–85. doi: 10.1093/jnci/djr556 Baracos VE (2013) Clinical trials of cancer cachexia therapy, now and hereafter. Am J Clin Oncol 31(10): 1257–8. doi: 10.1200/JCO.2012.48.3149 BAPEN (2011) Malnutrition Universal Screening Tool. http://tinyurl.com/nc7rvsz (accessed 20 June 2014) Barber MD, Ross JA,Voss AC,Tisdale MJ, Fearon KC (1999).The effect of an oral nutritional supplement enriched with fish oil on weight loss in patients with pancreatic cancer. Br J Cancer 81(1): 80–6. Beauchamp TL, Childress JF (2001) Principles of Biomedical Ethics, 5th edn. Oxford University Press, New York Bozzetti F, Arends J, Lundholm K, Micklewright A, Zurcher G, Muscaritoli M (2009) ESPEN Guidelines on Parenteral Nutrition: non-surgical oncology. Clin Nutr 28(4): 445–54. doi: 10.1016/j.clnu.2009.04.011 Christie NHS Foundation Trust (2012) Eating: Help Yourself. A Guide for Patients with Eating Problems, and their Families. http://tinyurl.com/nx9bv26 (accessed 20 June 2014) Department of Health (2000) The NHS Cancer Plan: A Plan for Investment, A Plan for Reform. http://tinyurl.com/2hwntl (accessed 4 June 2014) Dewys WD, Begg C, Lavin PT et al (1980) Prognostic effect of weight loss prior to chemotherapy in cancer patients: Eastern Cooperative Oncology Group.

KEY POINTS

w Nutrition has an important role to play in supportive and palliative care, from diagnosis to end-of-life care

w Early nutritional screening and nutritional intervention should be carried out across all care settings

w The role of the community nurse is essential in early identification of malnutrition

w Nutritional goals should be reviewed and adapted during the cancer journey

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