The Macmillan weight and eating studies 2003-2007 (MWES) have found a number of social forces that contribute to carers unintentionally compromising the well-being of people with advanced cancer.
- This article has been double-blind peer reviewed
- Figures and tables can be seen in the attached print-friendly PDF file of the complete article found under “related files”
Hopkinson, J.B. (2008) Carers’ influence on diets of people with advanced cancer. This is an extended version of the article published in Nursing Times; 104: 12, 28-29.
BACKGROUND: The Macmillan weight and eating studies 2003-2007 are investigating ways of helping people with advanced cancer live with symptoms of weight loss and loss of appetite. These can cause distress for both patients and carers, and can be a source of conflict between them.
AIM: To examine a specific cause of distress (healthy-eating messages), and the implications for nursing practice.
METHOD: Data for this article is taken from a mixed method exploratory case study carried out in 2003 and a pilot study for a trial in 2005.
RESULTS: Carers are committed to helping patients and believe it is important to encourage them to eat. However, the influence of healthy-eating messages can lead to inappropriate feeding and cause distress for both groups.
CONCLUSION: Nurses can help by assessing carers’ concerns about patients’ eating habits and providing information about eating well in advanced cancer.
Jane B. Hopkinson, PhD, MSc, BSc, RGN, ONC, is Macmillan senior research fellow, Macmillan Research Unit, School of Nursing and Midwifery, University of Southampton.
The Macmillan weight and eating studies 2003-2007 (MWES) have found a number of social forces that contribute to carers unintentionally compromising the well-being of people with advanced cancer.
To date, nutritional assessment has been patient-focused. Nutritional screening tools such as the patient-generated subjective global assessment (PG-SGA) (Bauer et al, 2002; Thoresen et al, 2002) do not identify environmental factors that may influence dietary intake. However, it seems likely that family members influence patient food intake, for example, through taking responsibility for food preparation. This article provides evidence that family members can influence patient food intake and their experience of eating. It draws on research about people with advanced cancer who have symptoms of cancer cachexia syndrome (CCS), a constellation of symptoms that include weight loss and anorexia caused primarily by tumour-induced metabolic change (Strasser and Bruera, 2002; Tisdale, 2002). It also explores the way in which healthy-eating messages inform carer behaviour, which can compromise the well-being of people with cancer cachexia syndrome and examines how healthy-eating messages can contribute to eating-related distress and conflict in families over food.
The MWES are a series of projects examining the problems of weight loss and eating for people with advanced cancer. To date, the purpose has been to:
- Understand the problems caused by loss of weight and appetite loss;
- Develop and test interventions to mitigate weight and eating-related distress.
The studies have focused primarily on problems and solutions for patients.
Management of CCS symptoms
Up to 80% of people with advanced cancer have symptoms of weight loss and loss of appetite. More than half are troubled by the symptoms (Hopkinson et al, 2006). While pharmacology, such as steroids, can improve appetite for short periods of time and nutritional supplementation can improve nutritional intake, neither drugs nor feeding have been shown to bring about gain in muscle mass, increased survival or enhanced quality of life (Hopkinson et al, 2006; Brown, 2002). The outcomes of feeding people with advanced cancer are unknown (Strasser, 2003).
People with advanced cancer troubled by weight loss and anorexia require different support from those earlier in their cancer journey who have potentially curable disease. While nutritional counselling and supplementation have no known benefit in advanced disease, they improve nutritional status and quality of life in people receiving active cancer treatments (Ravasco et al, 2007).
Appropriate dietary intake in advanced cancer
The current lack of evidence that feeding people with advanced disease can lead to sustained weight gain or improved survival should inform nursing care. The purpose of nursing assessment should be to identify whether patients perceive weight loss and eating as problems. Intervention is only appropriate if they are causing distress. There is a spectrum of response to weight loss and changing eating habits in people with advanced cancer (Hopkinson and Corner, 2006), which ranges from acceptance to self-action, where self-action is defined as the manipulation of one’s diet with the aim of improving health. Eating-related distress can be experienced across the whole spectrum, and appropriate dietary advice depends on where patients lie in the spectrum described.
Patients who engage in self-action can find helpful information/advice on how to optimise their nutritional intake within the confines of their small appetite. It is important to help them identify high-energy, high-protein foods that are easy to eat (typically they find soft foods and fluids easiest to consume). They will then be able to improve their intake without needing to increase the amount they eat (Cancerbacup, 2007). However, the majority of people with advanced cancer and a small appetite place value on enjoyment rather than nutritional content of food. They can find it reassuring to be told that eating what they enjoy is fine and that we all eat more of the things we like, so eating what they enjoy is likely to optimise their nutritional intake.
Issues for carers and family members
There is a small body of literature that shows that patients’ weight loss and anorexia can also be problems for family members. In a survey, carers were found to be more anxious than patients about weight loss and appetite loss (Hawkins, 2000). Exploratory interview-based studies have found food intake a source of conflict between patients and carers (McClement et al, 2004; McClement et al, 2003). The reason for tensions over food has not previously been explored. Understanding interactions between patients and carers relating to change in appetite might be important in improving symptom management.
The aim of this study was to examine a specific cause of distress for both patients and carers (healthy-eating messages), and the implications for nursing practice.
MWES are a series of mixed-method studies informed by hermeneutic phenomenology. They examine how people with advanced cancer and their carers can be helped to manage weight loss and anorexia.
This report draws on data from two projects - a mixed-method exploratory case study conducted in 2003 and a pilot study for a trial carried out in 2005. Participants were clients of two community palliative care teams in the South of England. The main method of data collection for both projects was semi-structured interviews, which were transcribed verbatim, then analysed using content and thematic approaches (Miles and Huberman, 1994; Wolcott, 1994). This study draws on a subset of the interviews - the 32 patient-carer pairs of interviews generated by the two projects (see box for sample characteristics). It reports an interpretation of ways in which carers were influencing patient dietary intake. All names have been changed.
Two local research ethics committees approved the study, which conformed to local healthcare organisations’ research governance requirements. All participants gave written consent.
Patient sample characteristics (n=32)
Age range 43-85 years
All carers wanted to help patients with their problems. However, many expressed uncertainty about how best to do so when patients were losing weight and had a small appetite.
Patients’ changing appetite
Eating habits in people with advanced cancer change over time in response to palliative treatments, other symptoms and disease status. Changes can include: decline in the amount eaten; loss of desire to eat; feeling full quickly; taste changes; and wanting to eat at different times from other family members. Here are examples of changes in eating habit described by patients:
‘Some days I look and say “Oh no, I won’t have that. The body objects to it.”’ (Rita)
‘The palate seems to have lost its taste buds and the impetus to eat is not there.’ (Cyril)
‘Some meals are put in front of me, which look on the face of it very nice, but as soon as I taste it… I can’t eat it and that basically is how [cancer] has affected me.’ (Arthur)
Carers don’t know what to do to help
Carers typically felt a sense of responsibility for patients’ food intake and described making efforts to encourage them to eat. However, while carers wanted to do something to help patients and saw feeding as a way of helping, few were confident that what they were doing was appropriate. Paula’s husband was focusing on his wife’s nutritional intake, for example counting her daily calorie intake, but without knowing what a realistic goal might be.
‘I think we can, from a diet point of view, strengthen her. I can’t help thinking she has had such a rapid weight loss in a few months… really we need to stop that and try to put some of that weight back. I don’t know how much, I’m in out of my depth here.’ (Paula’s husband)
Beryl had a different concern. Her husband had lost weight and was weak. He was able to eat just a quarter of his pre-illness intake. She was uncertain if doing things for him was helpful (enabling him to conserve energy) or unhelpful (as exercise is needed to maintain muscle mass).
‘He’s completely losing his muscles… If he needs a spoon I’ll go and get it. If he needs some sugar I’ll go and get it…. I don’t know if that’s a mistake, but I thought, “He’s weak and poorly, it’s the right thing to do.” But I don’t know that it is the right thing to do.’ (Beryl)
Arthur’s wife had anxieties about her competence to feed him appropriately. She wondered how others manage, including healthcare professionals. During the interview, she asked what else she might do.
‘When people go in the hospice who can’t eat anything, I don’t know how they keep them going. Do you know what they give them?’ (Arthur’s wife)
Carers can unintentionally contribute to eating difficulties
In the absence of any guidance, carers did what they believed sensible and in the patient’s best interests. However, well-intentioned comments and action could contribute to patients’ eating problems. In some cases, this was even seen as uncaring, when it was felt to show that the carer had little insight into the experience of living with a poor appetite. Emma explained:
‘Mum will go through, “Would you like this? Or would you like that?” The end product is that it is even harder for me to try and stomach something.’ (Emma)
Colin’s problem was different. He found his wife’s encouragement to eat troubling because it implied he was to blame for his weight loss:
‘She was telling me, “You’ve got to eat or you’ll lose weight”. I’d say “Right, I can’t argue with that”. I’ve tried. It was in vain.’
Interviewer: ‘How does that make you feel?’
‘Well, a bit irritable, but she’s doing her best.’
Healthy-eating messages inform carer behaviour
Carers drew on healthy-eating messages disseminated to the general population when deciding what was in patients’ best interest. However, these messages are about avoiding the risk of disease.
Carers described urging fruit and vegetables on patients. They were proud of their achievements in encouraging, persuading, cajoling and sometimes forcing these foods.
‘She doesn’t like vegetables now. She used to eat them. I make her eat them. I put them on her plate and don’t let her leave them. I don’t put a lot on but I think she needs to eat fresh vegetables - that’s me!’ (Rita’s friend)
Fruit, vegetables and other foods considered good for patients were perceived to have the potential to strengthen the body and/or to arrest or cure the cancer.
‘We haven’t been told, but I presume that a healthy diet is good for your body no matter what the cancer tries to do to it. It [the body] can fight back and you need somebody to encourage you to eat sometimes.’ (Mike’s wife)
Disagreements over healthy diets
When patients were unable to eat foods perceived as healthy by carers, tensions could arise in the family. There was also conflict over what should be eaten. Of the 32 patient-carer pairs, 10 described at least one disagreement arising from the perception that the patient was eating unhealthy foods. Here are three examples:
‘I do go into battle sometimes…. He’ll eat sweet biscuits, cakes, you name it, but when it comes to actual meals, even things he used to be passionate about, he just won’t eat.’ (William’s wife)
‘She can’t eat fruit as she used to…. And it does make me slightly cross.’ (Rachel’s daughter)
‘It doesn’t have to be porridge, does it! He says he needs to eat [porridge]. Well there are other things you can eat instead…. I can’t leave him if he doesn’t want to eat. He won’t eat vegetables.’ (Nigel’s wife)
The MWES have found that carers can unintentionally compromise the well-being of a person with symptoms of cancer cachexia syndrome. This article draws attention to one possible explanatory factor: healthy-eating messages.
Carers want to help people with advanced disease manage weight loss and appetite change. They take for granted that encouraging or even forcing food is important to patients’ well-being, yet there is no proven benefit for people with advanced cancer. Eating can contribute to suffering as the end of life approaches. These findings suggest that working with carers is important in improving the lives of people with this syndrome.
Healthy-eating messages are highly prevalent. Evidence that a diet high in fibre, fruit and vegetables can protect against cancer (Shaw and Lewis, 2005) and other diseases has generated an industry around promoting good foods. We are urged to feel good about consuming foods with health benefits through advertisements, the media and publications. Evidence shows that people are most likely to follow health-promoting advice, such as following a diet with the promise of health benefit, when they are ill or anticipate ill-health (Lawton, 2003).
However, healthy-eating messages are aimed at healthy people and do not take into account the special dietary needs of people with disease or particular illness-related problems. Patients with advanced cancer and cancer cachexia syndrome are a special group. If they experience unintentional weight loss and loss of appetite then selecting high-energy and high-protein foods from those they enjoy is the way to eat well. Many such foods are ‘prohibited’, labelled as unhealthy for the general population, and while it is easy to assume they will be particularly harmful for those who have already succumbed to disease for people with little appetite they are a way of optimising nutritional intake (Nutrition Advisory Group for Elderly People of the British Dietetic Association, 2001).
While only some people with advanced cancer see a dietitian, all see a nurse. Nurses are therefore in an ideal position to give them information and advice on how to eat well.
The limitation of this study lies primarily in its cross-sectional design. It examines interviews conducted at one point in time and relies on individuals’ accounts of events to draw its conclusions. The claims would be strengthened by further work examining change in patient symptom experiences and associated carer behaviour over time.
The transferability of the findings is also limited by the sample. The study was conducted across geographical locations in the South of England where black and minority ethnic groups were poorly represented. The findings may not translate to all community care contexts.
Implications for practice
Nurses are vital in supporting people with advanced cancer who have weight loss and difficulty eating. While dietitians are the professional group with expertise in nutritional support, nurses have contact with all patients, so are in a prime position to offer first-line assessment and intervention or referral to specialist services if appropriate. Government policy sets out the expectation that nutrition will be a consideration in the care of people across all primary and secondary care settings (NICE, 2006).
Nursing assessment should include questions about carers’ concerns about what patients are eating. According to the carer’s concerns, it may be important to offer information and advice about the disease-induced changes in eating habits often experienced in advanced cancer. It may also be worth pointing out that a healthy diet (that is, low-fat, high-fibre foods, five portions of fruit and vegetables daily) has no proven benefit for people with advanced cancer.
Here are some suggested questions that nurses could use in assessments with carers, to establish their concerns about patients’ dietary habits:
Tell me what your partner had to eat yesterday?
Is this different to what they would have eaten before they became unwell?
How is it different?
Does it trouble you that their eating habits have changed?
Why does it trouble you?
What do you think they should eat?
Resources to support nursing practice
There is limited information available on eating well with advanced cancer. Sources of evidence-based information are:
Living with changes in eating - a set of eight information leaflets to help patients with advanced cancer and their carers live with weight loss and eating-related problems. Published by Macmillan Cancer Support, London, 2006. Tel: 0800 500 800. Available free of charge from: www.be.macmillan.org.uk
Durham Cachexia Pack – a training package for healthcare professionals published by Macmillan Cancer Support. London, 2007. Web access free of charge learnzone.macmillan.org.uk
Cancer Research UK’s CancerHelp website – pages dedicated to supporting people with advanced cancer experiencing eating problems. Diet in advanced cancer. www.cancerhelp.org.uk (Updated March 2007).
Nurses can help by assessing carers’ concerns about patients’ eating habits and providing information about eating well in advanced cancer.
Bauer, J. et al (2002) Use of the scored patient-generated subjective global assessment (PG-SGA) as a nutritional assessment tool in patients with cancer. European Journal of Clinical Nutrition; 56: 779-785.
Brown, J.K. (2002) A systematic review of the evidence on symptom management of cancer related anorexia. Oncology Nursing Forum; 29: 517-32.
Cancerbackup (2007) Eating Well. www.cancerbackup.org.uk
Hawkins, C. (2000) Anorexia and anxiety in advanced malignancy: the relative problem. Journal of Human Nutrition and Dietetics; 13: 2, 113-117.
Hopkinson, J.B. et al (2006) The prevalence of concern about weight loss and change in eating habits in people with advanced cancer. Journal of Pain and Symptom Management; 32: 4, 322-331.
Hopkinson, J.B., Corner, J.L. (2006) Helping patients with advanced cancer live with concerns about eating: a challenge for palliative care professionals. Journal of Pain and Symptom Management; 31: 4, 293-305.
NICE (2006) Nutritional Support in Adults. www.nice.org.uk
Nutritional Advisory Group for Elderly People of the British Dietetic Association (2001) Have you got a Small Appetite? Guide to Eating Well for Anyone with a Small Appetite, Whatever their Age. Birmingham: NAGE.
Lawton, J. (2003) Lay experiences of health and illness: past research and future agendas. Sociology of Health and Illness; 25: 23-40.
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Miles M., Huberman, M. (1994) Qualitative Data Analysis. Thousand Oaks, CA: SAGE.
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Shaw, C., Lewis, S. (2005) Cancer: Food, Facts and Recipes. London: Hamlyn.
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Wolcott, H. (1994) Transforming Qualitative Data: Description, Analysis and Interpretation. Thousand Oaks, CA: SAGE.