Appetite problems

Definition and prevalence

Appetite problems in palliative care include a reduced desire or inability to eat, leading to malnutrition and weight loss. In cancer patients, these problems are often driven by anorexia-cachexia syndrome, characterised by profound metabolic changes, including increased energy expenditure and muscle wasting, often exacerbated by the inflammatory effects of cancer and its treatment. [1] Non-cancer populations, such as people living with dementia or chronic organ failure, can experience appetite problems due to factors like underlying cognitive decline, uraemia, and cholestasis. Other biopsychosocial comorbidities in both cancer and non-cancer populations can lead to difficulties in self-feeding and reduced motivation to eat, including depression, polypharmacy, and social isolation. [2,3]

The prevalence of appetite problems varies, with up to 80% of cancer patients reporting some degree of anorexia, especially in advanced stages of the disease. [4] In contrast, the prevalence in non-cancer populations is high but less well-documented, often going underreported due to the gradual onset of symptoms and competing health priorities. [5]

Assessment

Assessing appetite problems in cancer and non-cancer populations in palliative care requires distinct approaches, with some overlapping tools but differing focuses. In cancer populations, tools like the Edmonton Symptom Assessment System (ESAS) and Patient-Generated Subjective Global Assessment (PG-SGA) are commonly employed to monitor symptoms such as anorexia and weight loss, which are often associated with anorexia-cachexia syndrome. [1,4] Objective measures, including BMI, weight tracking, and serum albumin levels, provide insights into the patient's nutritional status and the effectiveness of interventions. Functional assessments, such as the Karnofsky Performance Scale, are also used to evaluate the impact of appetite loss on daily activities, which can guide decisions on nutritional care. [2] In cancer care, these assessments are typically supported by a multidisciplinary team, addressing both the physical and psychological aspects of appetite loss. [6]

In non-cancer populations, particularly those with cognitive impairments or severe mental disorders, assessment tends to be more complex due to communication barriers and the multifactorial nature of appetite loss. While standard tools like ESAS and PG-SGA are used, they may not fully capture the nuances of appetite problems in these groups. [3,7] In these cases, proxy reporting from caregivers and direct observation of eating behaviours are often more informative. Additionally, culturally adapted tools and the involvement of culturally competent care providers are important for ensuring accurate assessments, especially in culturally and linguistically diverse (CALD) populations. [8]

Non-pharmacological treatment

Non-pharmacological treatments for appetite problems in palliative care focus on improving the patient's quality of life by addressing psychological, social, and environmental factors that contribute to reduced appetite. One approach involves dietary modifications, such as offering smaller, more frequent meals and incorporating high-calorie, nutrient-dense foods that are easier for patients to consume. Texture-modified diets may also be helpful for patients who have difficulty swallowing, ensuring they receive adequate nutrition while minimising discomfort during meals. [4] Additionally, encouraging patients to eat in a social setting, when possible, may help stimulate appetite by making mealtimes more enjoyable and less stressful. [9] Taking the focus away nutritional requirements, and having more of a focus on eating for pleasure and leisure can improve appetite.

Psychosocial support is another important aspect of non-pharmacological management. This may include providing counselling or cognitive-behavioural therapy to help patients and their families cope with the emotional and psychological challenges associated with appetite loss. [2] Educating caregivers on the value of creating a positive mealtime environment, free from pressure or anxiety, can also be beneficial. Reducing options can help prevent patients from feeling overwhelmed. For CALD populations, involving family members in meal preparation and incorporating culturally relevant foods can improve acceptance of food and enhance the overall eating experience. [8] Simple environmental modifications, such as improving the aesthetics of food presentation or adjusting the dining environment to be more comfortable and inviting, may also positively impact appetite in palliative care settings. [3]

Pharmacological treatment

Pharmacological treatments for appetite problems in palliative care are considered to address symptoms like anorexia and cachexia, particularly in patients with advanced illnesses such as cancer. Among the most commonly used agents are appetite stimulants like corticosteroids. Corticosteroids, such as dexamethasone, are frequently prescribed due to their potential to improve appetite relatively quickly, though their long-term use may be constrained by side effects like muscle wasting, fluid retention, and increased risk of infections. [1,4] Progestogens, such as megestrol acetate, are also used and may help stimulate appetite and promote weight gain. However, side effects, including thromboembolic events and adrenal suppression, might limit their applicability in some patients. [1,10]

Cannabinoids are another class of drugs that have been explored for managing appetite loss, particularly in cancer patients. While some studies suggest that cannabinoids could improve appetite and reduce nausea, the evidence remains mixed, and their use is often tempered by concerns about psychoactive side effects, such as dizziness and cognitive impairment, especially in elderly or cognitively impaired patients. [4,6] Anabolic agents like oxandrolone have also been investigated for their potential to promote muscle mass and improve appetite in cachectic patients, though their use is not widespread and may be limited by the available evidence and possible side effects. [1]

In non-cancer populations, the use of pharmacological treatments might be more complex. Antidepressants like mirtazapine have been suggested to help stimulate appetite in patients with depression-related anorexia, though their overall effectiveness in palliative care remains an area of ongoing research. [7] Additionally, the risk of side effects such as sedation and cognitive impairment in these populations may necessitate careful consideration and close monitoring. [11]

The effectiveness of pharmacological treatments for appetite problems appears to vary widely among patients, and their use is often carefully tailored to individual circumstances, considering potential benefits and side effects. In many cases, these treatments are used alongside non-pharmacological strategies to address the multifaceted nature of appetite loss in palliative care. [1,4,6] 

Equity and access

The management of appetite problems in palliative care is influenced by various social, economic, and cultural factors, leading to disparities in care. Patients from lower socioeconomic backgrounds often face challenges in accessing specialised nutritional support, such as dietitian consultations or advanced palliative care services. Limited financial resources may restrict their ability to afford nutrient-dense foods or supplements, potentially impacting their ability to manage appetite issues effectively. [3,12] Additionally, individuals living in rural or remote areas may experience geographic isolation, which limits access to specialised care. This isolation can result in delayed diagnosis and less comprehensive management of appetite problems compared to those in urban settings. [13,14]

When considering CALD populations, cultural factors influence how appetite problems are managed. Food practices are often closely tied to cultural identity, affecting perceptions and approaches to appetite loss. In some cultures, continuing to feed a person, even when it may no longer be beneficial, is also seen as a moral or religious duty. These cultural beliefs can influence how families perceive the withholding of nutrition, potentially leading to conflicts between healthcare providers and families. [8,11] Sensitivity to these cultural values and involving culturally competent care providers in discussions about nutrition can help bridge understanding and support decision-making that respects both the patient’s and family’s beliefs and the medical realities of the situation. To address these challenges, culturally competent care providers and the use of interpreters are essential, though these resources may not always be accessible, particularly in underfunded or understaffed settings. [11,12]

Aboriginal and Torres Strait Islander peoples may encounter unique challenges in managing appetite problems due to historical and systemic factors that influence their interactions with healthcare services. Cultural safety, respect for traditional practices, and involving Aboriginal and Torres Strait Islander health workers in care delivery are essential for providing effective and respectful care. [15]

Patients with severe mental disorders face additional challenges in managing appetite problems, often compounded by the stigma associated with mental illness. These patients may receive less intensive treatment for appetite issues due to a greater focus on managing psychiatric symptoms over nutritional concerns, which can lead to higher rates of undernutrition and associated complications. [7] Healthcare professionals may also face limitations in training or resources to effectively address the unique nutritional needs of these patients, requiring a more integrated approach to care that considers both mental health and nutritional status. [11] Decisions to withhold nutrition in this population require careful consideration of the patient’s mental capacity to participate in decision-making and the potential impact on their mental health. The psychological distress associated with these decisions can be profound for both the patient and their caregivers, necessitating a well-coordinated approach that includes mental health professionals, palliative care specialists, and legal advisors when appropriate. [7,11]

Care context

In aged care settings, managing appetite problems, particularly in people living with dementia, involves addressing both physical and behavioural challenges. These individuals often struggle with eating due to cognitive impairments, therefore requiring texture-modified diets and feeding assistance to help prevent malnutrition. [2,4] As dementia progresses, the decision to withhold or withdraw nutrition becomes increasingly complex and emotionally charged. Healthcare providers must navigate these decisions with sensitivity, supporting families in focusing on the comfort and quality of life of the person rather than solely on prolonging life. [1] Additionally, managing behaviours like agitation during meals, ensuring regular and appropriate assessment of oral care, and offering culturally familiar foods, can help maintain a positive feeding experience and preserve the person’s sense of identity. [8]

In hospital-based palliative care settings, the management of appetite problems is often more intensive due to the availability of a multidisciplinary team, including dietitians, nurses, and palliative care specialists. This team approach allows for frequent monitoring and the ability to make timely adjustments to the care plan as the patient’s condition evolves. The emphasis in these settings is typically on maintaining comfort and enhancing quality of life rather than on pursuing curative treatments, particularly in advanced stages of illness. [3] The care strategies in these environments may include a combination of tailored nutritional interventions, symptom management, and psychosocial support, aiming to address the specific needs of each patient in a holistic manner. [1] Importantly, decisions about withholding or withdrawing nutrition are approached with careful consideration of the patient’s overall condition and personal values, often involving in-depth discussions with the patient and their family to ensure that care aligns with their goals and wishes.

Paediatric palliative care presents distinct challenges, particularly in managing appetite problems while balancing the child’s growth and developmental needs. Nutritional management in this context often involves close collaboration among paediatricians, dietitians, and child life specialists to ensure that the child receives appropriate nutritional support that is both physically and emotionally suitable. [16] The emotional impact of decisions regarding nutrition, such as whether to continue or withdraw feeding, can be profound for parents and caregivers. These decisions are deeply intertwined with the caregiving role and can cause significant distress. Healthcare teams must provide clear, compassionate communication to help families navigate these difficult choices, ensuring that the focus remains on the child’s comfort and overall well-being. [1] The goal is to create a care plan that meets the child’s unique needs while also supporting the family emotionally, recognising the complex interplay between medical care and family dynamics in paediatric palliative care.

Implications for families and carers

Managing appetite problems in palliative care can have considerable implications for families and carers, who often play a central role in supporting their loved ones. [1] Appetite loss can be a source of emotional distress, as food is closely associated with care, love, and nurturing. [16] Watching a loved one refuse food or struggle with weight loss may lead to feelings of helplessness or concern, particularly when families are unsure how to help. [2]

The decision-making process around nutritional support can be challenging for families. [1] When appetite problems persist despite interventions, families may need to consider whether to continue, adjust, or cease nutritional support. [6] This decision can be emotionally complex, as it may seem to conflict with the natural desire to provide nourishment. [1] Healthcare providers play an essential role in supporting families through these decisions by offering clear communication and helping them understand that, in some cases, prioritising comfort and quality of life might involve reconsidering the role of nutritional support. [9]

For carers, the practical demands of managing appetite problems can lead to stress and a sense of being overwhelmed. [6] They are often responsible for preparing meals, monitoring intake, and providing emotional support during mealtimes. [9] When the patient is experiencing severe anorexia or cachexia, these tasks can become particularly challenging, leaving carers uncertain about the best course of action. [1]

Overall, the implications for families and carers in managing appetite problems are multifaceted, involving both emotional and practical challenges. [16] Providing them with clear communication, emotional support, and practical resources can help them navigate these difficulties while keeping the patient’s comfort and well-being at the forefront. [1,2]