Addressing appetite and weight loss issues

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Anorexia and cachexia are common in people with advanced illness. Sarcopenia is common in older people. They are significant concerns for many people with advanced illness. 

The prevalence of cachexia ranges from 5-20 per cent in those with chronic heart failure to 60 per cent in those with COPD and as high as 85 per cent in those with advanced cancer, particularly pancreatic, gastric, and lung.


Definition

Anorexia is loss of appetite or reduced nutritional intake.

Early satiety is when a person wants to eat but can only take small amounts due to a sense of fullness. It is common in cancer patients and may be separate from other appetite problems, or it may co-exist with anorexia or nausea.

Cachexia is a complex condition related to an underlying illness. It results in weight and muscle and generalised weakness, with or without loss of fat mass. It cannot be fully reversed by regular nutritional support and leads to progressive functional impairment.

The cachexia-anorexia syndrome is a complex metabolic syndrome that usually involves anorexia, significant weight loss, generalised weakness, and loss of skeletal muscle. It is commonly experienced by people with advanced cancer and chronic illnesses including advanced heart failure, chronic kidney disease (CKD), chronic obstructive pulmonary disease (COPD) and HIV/AIDS.

Sarcopenia is the loss of muscle mass with or without weight loss. It is associated with ageing and with loss of function. Most people with cachexia are sarcopenic, however, most people with sarcopenia are not cachectic.


What you can do

Nurses have an important role in recognising, assessing, and managing symptoms related to appetite and weight loss. They can also help patients and families with sensitive and culturally appropriate education and support.

Anorexia and cachexia commonly occur together in cancer and advanced disease.

People with cachexia will often have:

  • anorexia or reduced nutritional intake
  • generalised inflammation
  • decreased muscle bulk (sarcopenia) and strength
  • fatigue.

Preparing and eating food may have a powerful cultural significance and is often an intimate part of the expression of love and caring within a family or between partners. Family and carers may need help in adjusting to changes in the person’s interest in food, their appetite and physical body.

It is important to remember that appetite is a subjective symptom which means that it is something the person experiences without obvious signs to anyone else and so it is best described by the person (self-reporting).

Tailor the assessment to the person’s ability to tolerate and benefit from the assessment.


Appetite

Use open-ended questions to explore specific characteristics of appetite and eating (nutritional intake) such as usual intake patterns, food likes and dislikes, and the meaning of food or eating to the person and family. Questions can lead to a broader discussion about why they cannot or do not want to eat, for example, painful gums, ill-fitting dentures, or altered sense of taste; or how they feel about the changes to their physical body. For example:

  • 'Do you feel like eating?”
  • 'What did you eat for breakfast, lunch, dinner, snacks [today] [yesterday] [in the past few days]?'
  • 'What do you enjoy?' 'Why do you like them so much?'
  • 'What role did food and eating play in your life? And how about now?'
  • 'How are mealtimes for you? How does this affect you and your [family] [partner]?'
  • 'What food do you not like now that you used to like?'
  • 'What is it about this food that is no longer enjoyable?'
  • 'As your condition progresses, it is normal for the physical body to change. What have you noticed?'

Cultural or religious beliefs about giving, taking, and refusing food may need to be explored.

Assess and monitor possible contributing factors which are reversible such as:

  • dyspnoea
  • mouth problems (mucositis, oral thrush, mouth pain, no dentures, or teeth ulcers)
  • xerostomia (dry mouth)
  • nausea, altered taste
  • difficulty swallowing (dysphagia)
  • constipation
  • early satiety (may be related to gastric outlet obstruction)
  • pain
  • depression
  • anaemia
  • deconditioning
  • the effect of medications
  • inappropriate or unappealing presentation of food
  • cultural expectations relating to food, diet, and body weight.
Assessment tools:
Cachexia/Anorexia

The Functional Assessment of Anorexia/Cachexia Treatment (FAACT) includes questions on appetite, taste and interest in food; whether the person has difficulty eating or is being pressured to eat; physical appearance and how the person feels about this. Other questions explore physical wellbeing, social wellbeing, emotional wellbeing, and functional wellbeing.

Care can include:

  • maintaining social and cultural connections around food/meals with or without food
  • exploring the most suitable food options and distinguishing between eating for comfort and eating for nutritional intake
  • avoiding smells that trigger nausea
  • good oral care and good symptom management to manage any reversible factors as above
  • supporting a person’s physical, psychosocial wellbeing and functional wellbeing as their body changes with advanced disease
  • work with families to educate them about the person's changing needs and how they can be supported
  • seeking assistance from doctors or allied health professionals.
Care tips

For cachexia, a clear explanation that weight loss is likely due to disease processes may help the person and the family understand how the person can best be supported.

Pay careful attention to oral care – regularly assess mouth and gums including dentures - and treat any oral pain. This video on oral health assessment can guide you.

With changes in weight and in body condition, the person may be concerned or distressed about their appearance. Understanding and validating their concerns can help their self-esteem and dignity.

In people with advanced dementia, loss of appetite and decreasing oral intake may mark the transition to end-stage disease; therefore, provide support for the person and families as they deal with this change.

Doctors and allied health professionals who can help

Assistance from doctors and allied health professionals (nutrition, exercise, function, medication) may help. For example:

  • a dietitian can provide dietary recommendations for the person and their family and the care team
  • early in the disease process, aerobic exercise monitored by a physiotherapist may help body condition and a sense of wellbeing. Later on, energy conservation techniques may be taught by a physiotherapist or an occupational therapist.
  • Medication may be prescribed to boost appetite for short periods or to alleviate delayed gastric emptying.

This information was drawn from the following resources:

 

  1. Bruera E, Dev R. Assessment and management of anorexia and cachexia in palliative care. UpToDate [Internet]. 2021 [cited 2022 Aug 25].
  2. Schack EE, Wholihan D. Anorexia and cachexia. In: Ferrall BR, Paice JA, editors. Oxford textbook of palliative nursing [Internet]. New York, 2019; online edn, Oxford Academic; 2019.
  3. Therapeutic Guidelines Limited. Anorexia, weight loss and cachexia in palliative care. 2016. [updated 2016 Jul; cited 2022 Aug 25].
  4. Therapeutic Guidelines Limited. Cachexia - anorexia syndrome [Internet]. 2016. [updated 2016 Jul; cited 2022 Aug 25].
  5. Watson M, Ward S, Vallath N, Wells J, Campbell R. Gastrointestinal symptoms. In: Watson MS, Ward S, Vallath N, Wells J, Campbell R, editors. Oxford Handbook of Palliative Care. 3rd ed. Oxford: Oxford University Press; 2019.

Appetite and weight loss resources

Watch Cachexia and anaemia: what action is needed? from the Palliative Care Bridge

Watch Nutrition and palliative care from the Palliative Care Bridge

Access more Appetite and Weight Loss Resources

Last updated 26 August 2022

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