Abstract
Malnutrition is the single most common secondary diagnosis for patients with advanced cancer, and can affect up to 85% of patients. Anorexia and weight loss affect up to 80% of patients and are responsible for death in up to 20% of cases. Cancer cachexia is a feature of advanced cancer characterised by anorexia and a progressive loss of body weight, reduced immune response, poor treatment response, and poor quality of life. Providing effective nutritional support for patients who experience cancer cachexia at the end of life is very challenging and requires a multidisciplinary team approach to consider the implications beyond the patient’s dietary needs being met. Evidence suggests that health professionals have limited understanding of cachexia and are often at a loss as to how to manage patients who experience this severe form of weight loss. The purpose of this article is to examine the quality of life of patients with advanced cancer who experience cachexia. The article covers the aetiology and management of the condition as well as current treatment methods and management strategies. In particular, it emphasises the advantages of the Macmillan approach to weight and eating. This approach focuses on the social aspects of eating and weight gain, indicating the importance of considering the effects of malnutrition on both the patient and the carer.
Key words: Nutrition l Cancer cachexia l Macmillan approach
M
alnutrition is the single most commonsecondary diagnosis for people with advanced cancer, affecting up to 85% of patients (Argilés, 2005, Penet et al, 2011). Anorexia and weight loss affect up to 80% of patients and are responsible for death in up to 20% of cases (McGrath, 2002; Sarhill et al, 2003; Hopkinson et al, 2010; Penet et al, 2011). Cancer cachexia is a feature of advanced cancer characterised by anorexia and a progressive loss of body weight, reduced immune response, poor treatment response, and poor quality of life (QoL) (Gordon et al, 2005).
Nutritional support for people who experience cancer cachexia is not just about survivorship or improving nutritional status. Owing to the triad of anorexia, weight loss, and irreversible muscle wasting, the overall aim of treatment is to improve
the patient’s QoL. In people with advanced cancer, weight loss of 10% is significant, but patients experiencing 30% weight loss have a poor survival rate (Fearon, 2008). Such patients are also highly aware of changes in their appearance. Weight loss itself can also be highly distressing and a metaphor for losing control (Hopkinson et al, 2006).
Although many people with advanced cancer experience unintentional weight loss, little is known about how they may be helped to live with the effects of cachexia. The QoL issues around cachexia are numerous and are often associated with a failure to respond to medical treatment and an inability to drink and eat sufficiently, resulting in further weight loss. Health professionals and relatives often find it hard to discuss such emo tionally charged subjects, but if discussions do not take place, the effects of cachexia can precipitate fear, social isolation, and conflict between family members (Muir and Linklater, 2011).
As well as being essential for nutrition and hydration, eating and drinking are also hugely important for pleasure. The consequences of being unable to eat or drink can be devastating to both patients and their carers. Food is a social part of life and culture. It also plays an integral part in caregiving and is a vehicle to aid recovery. As people become ill, carers generally have an innate drive to ensure that sufficient food and fluids are available (Reid et al, 2009).
This article focuses on the QoL of patients with cancer cachexia and discusses the aetiology and management of cachexia. Current approaches to nursing assessment and medical treatment are considered, as are the challenges for health professionals in providing optimum care and supporting carers in their role. The article also considers the social and psychological implica tions of cachexia and their impact on both the patient and their family.
Aetiology of cancer cachexia
Cancer cachexia may be seen as a form of mal nutrition that affects skeletal muscle metabolism
Providing nutritional support
for patients with cancer cachexia
Elizabeth McCreery, John Costello
Elizabeth McCreery is
Macmillan Dietitian, Pennine Acute Hospitals NHS Trust, Manchester, UK; John Costello is Senior Lecturer in Palliative Care, University of Manchester, Manchester, UK Correspondence to: John Costello John.Costello@ manchester.ac.uk
and function, reduces cardiac mass, and influences cardiac muscle contraction (Baracos, 2000). The extent to which skeletal muscle mass is depleted is an important aspect of assessment. Those suffering with cachexia and experiencing severe muscle mass depletion have reduced QoL, and longterm survival can be affected. Cachexia is clinically characterised by anorexia, early satiety, weakness, and weight loss, and is sometimes associated with changes in taste perception (Baracos, 2000; Argilés, 2005). The experience also includes profound emaciation associated with general weakness, fatigue and mental apathy, chest infections, and loss of independence (Hoskin and Makin, 2003; Muscaritoli et al, 2006; Caro et al, 2009; Penet et al, 2011).
The aetiology of cachexia is multifactorial and can be classified as primary or secondary. Although the effects of the tumour on the body organs are not fully understood, primary cachexia is probably tumourinduced, driven by pro inflammatory cytokines and cachectic factors released by both the host and the cancer (Gordon et al, 2005; Penet et al, 2011). These have a metabolic effect, resulting in suppressed appetite and irreversible weight loss due to loss of fat and lean tissue (Hemming and Maher, 2005). The cytokines released include tumour necrosis factor (cachectin), interferon, and interleukins. The response is similar to sepsis or injury, in that nutri ents move from the periphery to the liver, resulting in increased gluconeogenesis. Additionally, there is a breakdown in fat stores due to a tumourderived lipolytic factor (Gordon et al, 2005; Penet et al, 2011). These metabolic changes are characterised by an irreversible, progressive, and involuntary loss of weight (Reid et al, 2009; Penet et al, 2011).
Secondary causes of cachexia include effects of cancer treatment, diarrhoea, dysphagia, reduced appetite (due to pain), ulcers, an unpleasant taste to food or loss of taste, and other concurrent disorders such as depression or anxiety (Capra et al, 2001; McGrath, 2002; Shragge et al, 2006; Hawkins, 2007).
Figure 1 is an attempt to classify cachexia
(Fearon, 2008). One of the clearest indicators is persistent weight loss, leading to muscle wasting. The illustration also indicates the lack of robust biomarkers to identify those in the precachectic phase or those likely to deteriorate, leading to death. As such, the classification may usefully serve as an illustration of how patients move through a spectrum, although not all patients will progress along the spectrum in the way the classification sets out.
A key symptom of developing cachexia is changes to eating habits and patterns, such as
early satiety, physical problems including chewing or swallowing difficulties, and taste changes (Hopkinson and Corner, 2006). The nutritional changes seen in patients with advanced cancer relate to the disease progression. The symptoms are often due to disease progression or treatment effects, as well as changes in nutritional intake and weight.
Effects of cachexia on the patient
and carer
The changes brought on by advanced cancer can come to control a person, or conversely the person may be able to take control over the changes. The nature of the response to the changes greatly affects QoL (Caro et al, 2007).
Evidence suggests that people with advanced disease often experience poor QoL and loss of hope and meaning (LloydWilliams et al, 2008). Patients may long for foods previously enjoyed, but when they see or taste them there may be feelings of repulsion or early satiety. This can be extremely distressing for the patient, highlighting the loss of normality (McGrath, 2002; Reid et al, 2009). If the pleasure of food is lost, the patient may perceive food to be a burden or a means of postponing death (Muir and Linklater, 2011).
Some patients believe that one has to stay positive to stay well, which can be seen as an attempt to control the cancer (Wilkinson and Kitzinger, 2000). Patients may feel that the cancer is eating away at them, symbolising a lack of control. They may attempt to regain control over their nutritional intake, pushing themselves to eat for selfpreservation; however, with the advanced stages of cancer there inevitably comes a point where the disease takes hold (Reid et al, 2009). Some people try to take control by limiting their oral intake in an attempt to slow the growth of the cancer. In the same way, refusing to eat may
Pre-cachexia
Weight loss
Survival: 6–9 months? 3–9 months? <3 months? Weight loss
Reduced food intake Systemic inflammation
Severe muscle wasting Fat loss Immunocompromised
Normal weight Death
Cachexia syndrome Severe cachexia
Figure 1. Classification of cachexia. Redrawn, with
permission, from Fearon (2008)
hasten death (Hopkinson and Corner, 2006). These are not only physical but also psychologi cal and emotional issues; for example, patients may start vomiting as an anticipatory reaction to the thought of food (McGrath, 2002).
As practitioners, it is useful to remind ourselves that cachexia in advanced cancer affects the QoL of both the patient and their carer(s). The carer’s role of providing hydration and nutrition repre sents a huge challenge. If a carer is unsuccessful in stabilising the patient’s weight with food, this challenges a core part of their caring skills and may cause conflict (McGrath, 2002; Salt, 2007). One reward that a carer may seek is for the patient to eat and enjoy food; however, this may be unachievable, causing more distress (Hopkinson and Corner, 2006). Reid et al (2009) studied the response to weight loss and found that patients connected weight loss with advanced illness. However, family members frequently linked weight loss with a reduced appetite, believing that the weight loss was reversible with more foods and drinks.
Family members may worry that the wider community will blame them for letting the patient starve to death or that they themselves are condemning the patient to a miserable death (Salt, 2007; Reid et al, 2009). Moreover, in differ ent cultures around the world, food is considered central to a person’s social identity. The distress of dramatic weight loss can be greater for the carer than the patient and can result in the carer pressurising the patient to eat (Reid et al, 2009; Yamagishi et al, 2010). Patients may therefore feel the burden of the carer’s anxiety around meal times, which can lead to pressurisation to eat, being told off, or anger and resentment on both parts. It can also precipitate feelings of inadequacy and guilt (McGrath, 2002; Hopkinson and Corner, 2006).
Dramatic weight loss draws attention, and there may be a sense of loss of identity from the patient but also friends and family (Hopkinson et al, 2006; Muir and Linklater, 2011). Some people avoid looking in a mirror as they perceive the person looking back is not their real self
(Reid et al, 2009). Patients may also opt out of social interaction surrounding food and estab lished routines such as attending church, simply because they want to avoid any embarrassing and offputting attention (Reid et al, 2009; Muir and Linklater, 2011). An anonymised authentic case study highlights the patient’s perspective (Box 1).
In terms of QoL, the physical, psychological, and social consequences of the ‘wasted’ appear ance are interconnected. The distress connected with weight loss and anorexia may lead to coping strategies such as seclusion, social isola tion, and even lying, with the patient pretending that they have eaten more than they have to avoid conflict (Muir and Linklater, 2011). Patients may feel paranoid that people are staring at them. Selfesteem and confidence may be reduced. This, in turn, can cause detachment from their social circle, which ought to be their support network (Reid et al, 2009).
Management of cancer cachexia
Issues around management
At present there is no known cure for cachexia (Gordon et al, 2005; Fearon, 2008). Standard nutritional support may not necessarily improve the outcome for this client group, probably as a result of the metabolic changes (Laviano and Meguid, 2003). Fish oils (eicosapentaenoic acid) and nonsteroidal antiinflammatory drugs may be beneficial, but more research is needed (Gordon et al, 2005; Fearon, 2008). Research has not yet found either drugs or feeding strategies that unequivocally improve nutritional status or QoL with advanced disease or that increase survival (Hopkinson et al, 2010).The medical management of malnutrition in advanced cancer can involve the use of numerous drugs to improve appetite, chiefly steroids. However, appetite is affected by various factors, including depression and fear of eating. Steroids may sim ply shift any distress to another problem, moving the symptomatology (Jatoi et al, 2003; Shragge et al, 2006). Before recommending steroids it is necessary to ensure that other factors are addressed, such as nausea, vomiting, diarrhoea, and dehydration. These should be treated where possible and help should be provided with regaining the pleasure associated with food and postponing loss of autonomy (Caro et al, 2007).
Health professionals have been reported to show inappropriate responses to the anxiety that is often attached to cachexia (McGrath, 2002; Reid et al, 2009). This may be due to a lack of understanding of what cachexia is and the predicted effects of advanced cancer on an
Box 1. Case study: Patrick’s story
Patrick was diagnosed with terminal lung cancer at 65 years of age. He had always been overweight, but suddenly he lost 4 stones in 3 months. His weight was classified as ‘healthy’, but the degree of weight loss in such a short period of time was very concerning. Patrick found that people did not recognise him. When out, friends would engage in conversations with his wife and then realise that the other person was Patrick. The obvious shocked response at his physical changes made Patrick feel emotionally insecure. He started to avoid social contact as it confirmed his change of appearance and he felt embarrassed by people’s reactions.
individual’s nutritional status. It may also be due to poor understanding of the emotions attached to these changes (Latham, 2001; Hopkinson et al, 2006; Reid et al, 2009). Mitchell et al (2008) demonstrated that only two thirds of health professionals working in cancer care always or regularly attempted to detect mood disorders during consultations. A substantial minority of staff relied on patients to open up discussions on emotional problems. Nurses may avoid the subject of cachexia as they may believe that little can be done and that this may cause more distress (Hopkinson et al, 2006). This has developed into nurse specialists adopting a ‘patientled’ approach rather than addressing cachexia as another symptom in a holistic approach (Hopkinson et al, 2006).
Any treatment for patients with advanced cancer should include a nutritional assessment. This invariably involves patients being weighed in the clinic. However, the results may not be discussed, and this may increase the taboo associated with any weight loss, escalating emotions to frustra tion, despair, and possibly anger (Hopkinson et al, 2006). In terms of the management of patients with advanced disease it is important to remember that, in some cases, patients may not wish to be weighed, as it may increase their sense of failure, limit their sense of hope, and make carers feel inadequate. The case study (Box 1) highlights the importance of staff recognising that although someone may have a ‘healthy weight’, they still may feel distressed. Assessing someone holistically should highlight whether specialist input or discussions on the issues sur rounding perceived loss of identity are needed (Muir and Linklater, 2011).
As the end of life approaches, family members may have time to dwell on the fact that the person is not eating and drinking. This can lead to fears that they will die from dehydration and/ or starvation and not from the illness (Salt, 2007). In reality the person has entered the termi nal phase, in which the desire to eat and drink dramatically reduces. It is important that family members appreciate that these changes are a normal part of dying (Scott, 2010). Good listen ing skills and empathy from staff should enable patients and caregivers to better understand why staff are not intervening with artificial nutrition or tackling it with other forms of intervention. Patients and caregivers can thereby be helped to attain a more realistic sense of what can be achieved.
Artificial nutrition and hydration raise a number of challenges relating to effective man agement. Withholding fluids can hasten death
and can be seen as a form of euthanasia either with or without the consent of the patient. Artificial hydration can conflict with the ethos of caring and relieving suffering (Goodhall, 1997). Different health professionals have different viewpoints regarding artificial feeding at the end stage of life. This can be confusing and possibly distressing for patients and carers (Salt, 2007). Among these views is the duty to consider ethical, legal, and professional aspects of the decision, ensuring that everything is done in the best inter ests of the patient without causing harm. Ultimately, patients should be given the choice to refuse lifesaving treatment such as oncology treatment or artificial feeding as long as they have mental capacity. Patients may choose to refuse treatment with the hope of dying quicker. Respect and empathy should be demonstrated by staff at all times (Dimond, 2001). Any intervention should benefit the patien, including discussions with the patient, family, and members of the multidisciplinary meeting.
The effects of cachexia are devastating, but more research is needed to investigate anti cachexic therapy (Fearon, 2008). Currently there appears to be a ‘loud silence’ regarding cancer malnutrition, as it is frequently identified but not often discussed. Unsympathetic health profes sionals with a lack of information will only increase the distress for those concerned and reduce the patient’s and carer’s confidence in them (McGrath, 2002).
Contemporary management strategies
One of the key principles of management for patients with cancer cachexia is to prevent further deterioration in nutritional status. At the same time it is important to stabilise weight without negatively affecting the patient’s auton omy (Hoskin and Makin, 2003; Caro et al, 2009). Early identification of cachexia is essential if strategies are to be identified for producing a more positive outcome, including improved func tional status, appetite, mobility, and QoL (Capra et al, 2001).
One contemporary strategy for the effective management of weight and eating is the Macmillan approach (Hopkinson et al, 2010). This approach creates a focus on the social aspects of eating and weight gain, emphasising the effects of malnutrition on both the patient and the carer. This innovative psychosocial intervention can enable nurses and others to respond more appropriately to the anxiety and distress caused by cachexia. The approach involves identifying individual coping strategies in relation to weight loss and eating difficulties.
❛
Nurses
may avoid the
subject of
cachexia as
they may
believe that
little can be
done and that
this may
cause more
distress ...❜
The assumption is that patients will have developed coping strategies throughout their life in relation to how they have responded to stress and change. The approach is solutionfocused, with the aim of empowering the patient to take control over food. This will hopefully improve their percep tion of eating and weight gain in relation to the effects of advanced cancer on their nutritional intake and status.
Contemporary strategies implemented to improve QoL should include addressing the concerns and fears of the patient by offering explanations and open discussion. Holistic assessments should highlight any particular causes of distress. If the distress is related to food or weight then the patient could be asked about the overall picture of food, past and present, including their food preferences. Any reversible causes and symptoms should be treated and any distress about body image acknowledged (Hopkinson et al, 2006; Hopkinson et al, 2010). Listening is just as important as asking questions, and solutions or coping strategies can be explored to relieve negative feelings such as help lessness and guilt, therefore relieving distress (Yamagishi et al, 2010). The patient and caregiver need the opportunity to openly discuss fears or changes in their eating patterns or weight.
At the end of life, professionals should enable the patient and caregiver to accept that changes in eating habit and weight are consistent with the approach taken to promote a good death. Nutritional support in curative cancer aims at improving or preventing any further loss in nutritional status and improving the response to oncology treatment (Fearon, 2008). However, in palliative care and in particular at the end of life, the nutritional support should focus on reducing the effects of the cancer (taste changes, diarrhoea, pain, nausea and vomiting) by providing dietary advice with meal and snack suggestions and alternatives, thereby improving the QoL for the individual (Caro et al, 2007). Good communica tion skills are imperative in explaining that a caregiver can develop the nurturing process with a shift in emphasis from quantity of food eaten to the experience of eating as a pleasure. It is important that carers and patients understand that it is acceptable not to be taking the most nourishing foods and drinks. Patients are often reassured to learn that they should eat what they enjoy, and often the overall nutritional intake improves (Hopkinson et al, 2010).
Carers should be given reassurance that they are ‘doing their bit’ by participating in aspects of care such as mouth care, allowing them to feel helpful (Salt, 2007). As death approaches this
may minimise guilt or selfblame on the part of both the patient and the caregiver, thus contribut ing to a good death. The overall aim is to live well with advanced cancer (Hopkinson and Corner, 2006; National Cancer Action team, 2009). Allowing the person to explore and understand the potential changes is crucial to their acceptance.
Other important factors to consider include:
●Written information should be provided
wherever appropriate. Macmillan produce good patient information booklets (www.macmillan.org.uk)
●Simple nourishing meals and snacks should be
encouraged
●Help prevent food becoming a burden by
helping the patient/carer accept the weight change and make adjustments
●Encourage confidence in trying new foods
●Relax and give reassurance regarding issues
causing increased anxiety
●Mouth and lip care is very important
●Artificial nutrition and hydration should be
discussed where appropriate with members of the multidisciplinary team, notably a dietitian
●Wherever possible staff should try and
anticipate likely problems before they arise. A key element in effective management is good communication with the patient and family and in particular between members of the multidisci plinary team. The management of patients with cachexia requires a team approach, although one of the key players is the dietitian.
Specialist referral
Frequently, patients experience severe side effects of their cancer and its treatment, including taste changes, mouth sores, dysphagia, and diarrhoea, making eating difficult and sometimes distressing (McGrath, 2002). In such cases the focus is placed on nutritional care (not nutritional status), aiming to alleviate weight and eatingrelated distress. A key specialist in this area is the Community Macmillan Dietitian, who incorpo rates nutritional care throughout the cancer journey. Patients may be referred for specialist input following diagnosis, during or after treat ment or surgery, and also for palliative care. The Macmillan Dietitian contributes to meetings relating to the Gold Standards Framework (Gold Standards Framework Centre, 2012) with the aim of optimising care when patients near the end of life. In addition, the Community Macmillan Therapy Team works alongside the clinical nurse specialists. Each person in the team has a role in holistically assessing every patient to identify any other support that they may require
❛
Contemporary
strategies
implemented
to improve
quality of life
should include
addressing the
concerns and
fears of the
patient by
offering
explanations
and open
discussion.❜
in their cancer journey. If necessary, patients are referred for other specialist advice and also to attend facilities such as a hospice day centre where appropriate.
Conclusion
Patients with advanced cancer experience loss of control and uncertainty, which in turn create distress and affect QoL. Following a review of the aetiology and management of cachexia, it would appear that there is a lack of understanding from some health professionals of the distress cachexia may cause. This article has argued that cachexia in advanced cancer should be seen not just as a physical problem but as one with major social and psychological implications for the patient and the caregiver. It is more difficult to eat when there is pressure from others to do so. Patients empowered through information and effective communication skills can come to terms with the symptoms and consequences of anorexia and weight loss. Health professionals need the knowledge gained from training and education to be able to sensitively manage this emotionally charged area of care, especially towards the end of life. Moreover, they need to refer for specialist input where appropriate so that the concerns of patients and/or family members can be addressed.
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