The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”¹

Since the opening of St Christopher’s Hospice in south London 1967, Dame Cicely Saunders and her colleagues paved the way for advancements in palliative care through clinical care, education and research.² Despite the many advances in the care of people with incurable illness (eg. improvements in pain management, addressing psychological disorders) there has been little progress in improving nutritional care. Indeed, in the area of cancer-related cachexia there is no standard of care and no licensed treatment. 

Furthermore, basic nutritional assessment and treatment can often be the exception rather than the norm for people with incurable illness. A step-change is needed so that attention to nutritional care becomes as important as the assessment and management of other symptoms. This review aims to discuss nutrition within palliative care from where we are now to where we need to be.

Nutrition issues in palliative care

Nutrition is an essential part of care for patients with palliative care needs and can improve quality of life.³ However, we know that for these patients, nutritional intake is often impaired which can lead to malnutrition and reduced quality of life. Malnutrition is the single most common secondary diagnosis in patients with advanced cancer and affecting up to 85% of patients.⁴ For patients who are cared for with palliative intent, the aim is mainly focused on improving quality of life and comfort,⁵ including minimising symptoms, such as nausea and vomiting, which may also impact on their nutritional intake.⁶ Nutritional status is often a cause for concern both for patients and also their families.

Evidence show that family members find it incredibly stressful when their loved ones are losing weight and not able to eat, which can have a negative impact on family relationships and may lead to tension and feelings of hopelessness from carers and family members.⁷ Understanding and meeting the nutritional and hydration needs of patients and providing education and support for their family and carers is therefore a key aspect of palliative care.

Where are we now?

The Scottish Palliative Care Guidelines state that “good palliative care is not just about supporting someone in the last months, days and hours of life, but about enhancing the quality of life for both patients and families at every stage of the disease process from diagnosis onwards”, they also highlight that palliative care should be initiated from diagnosis and the approach used alongside any active management plan.⁸

Unfortunately, nutrition is often overlooked when it comes to planning care and interventions with patients, and this is even more evident in the palliative care setting. 

Historically, palliative care was seen as the care for a patient at the end of life, with little focus on assessment of nutritional status and management. However, we now know with advancing treatments and research that patients are living longer with their disease and there is a need to pay more attention to this issue. 

Unfortunately, the mind-set among many healthcare professionals is often that, as the patient is being treated with palliative intent, a careful focus on nutritional assessment and management is no longer important or applicable. Furthermore, it often transpires that when patients are in the last weeks of life and severe (refractory) cachexia⁹ is present (marked weight loss, limited function) it is only then that nutritional interventions are initiated. At this stage, refractory cachexia is resistant to treatment, with little benefit or comfort achieved from oral nutritional support. 

Nutritional assessment is a key first step in the nutritional care. A recent audit in a large specialist palliative care setting in the UK has demonstrated that 92.5% of appropriate inpatients (n = 107) had a nutritional assessment completed within the first 24 hours of their admission.¹⁰ Assessments were completed as part of the nursing admission process and involved answering questions on five topics: 

Patient and family views or concerns

• Appetite
• Intake problems
• Diet and special dietary requirements
• Types of assistance or equipment required.

Using dietetic palliative care referral criteria from a local NHS Health Board, the audit found that 44.4% of inpatients fulfilled at least one criterion for immediate referral to a dietitian, and 29.3% fulfilled two or more criteria. The most common issues that arose were swallowing difficulties (36.4% of all inpatients assessed), anxiety related to cachexia/anorexia either from the patient or the relative (27.3%), and patients with obstructions or strictures affecting nutrition (16.2%).

This audit showed that it is feasible to undertake a brief nutrition assessment in nearly all inpatients in a large hospice. It also showed a significant number of inpatients have at least one nutritional need that would benefit from the input of a dietitian. Given the high number of patients audited, the findings may well reflect the current picture in other UK hospices.

Like many hospices this audit took place in a hospice that had very limited to no access to dietetic services. This raises the question of how the nutritional needs of patients were being addressed once they had been identified by the assessment tool. 

Given the often limited prognosis for patients, there can be a short time-frame to get things right for them and their families. If they are not able to receive expert dietetic advice in a timely manner, the window of opportunity to add something meaningful to their treatment plan may be missed.

Where should we be going?

There continues to be a lack of understanding in regard to what nutritional support can be offered to palliative care patients, not only for their physical symptoms, which may be impacting on their nutrition, but psychologically and emotionally. Eating/drinking and food have several connotations for patients and families including social, emotional and pleasure for people, and often as oral intake decreases this can have a negative impact on both patients and families. Therefore, it is imperative that these issues are not only addressed, but also done so in a timely manner. 

Recent guidelines by the European Society for Clinical Nutrition and Metabolism (ESPEN) on cancer-related malnutrition and cachexia have advocated that increased attention is paid to dietetic services for patients with cancer.⁵ These guidelines are also supported by a recent review of the literature in patients with incurable cancer.¹²

Dietitians are the only qualified health professionals that assess, diagnose and treat diet- and nutrition-related problems.¹³ However, disappointingly, they continue not to be a routine part of the multidisciplinary teams within palliative care, often due to funding issues. In fact, too frequently palliative care settings will have no dedicated dietetic/nutritional resources or funding at all. This raises the question of who is providing nutritional support for patients and families in these settings and what impact is it having on not only their nutritional status but also their quality of life?

As we know, palliative care encompasses not only patients with cancer but also patients with life-limiting conditions, including motor neuron disease and many more. Each of these individual conditions comes with its own nutritional challenges. Without specific education, advice to support patients and carers provided by the medical and nursing teams can often be conflicting or incorrect, causing more distress for patients and families. Regular nutritional education,⁵ is therefore essential in order to ensure that the advice given to this patient group is not only accurate and evidence based but also concise. 

The ESPEN guidelines made several key recommendations including:

• Nutritional intake should be screened regularly from the onset of cancer diagnosis, including those with advanced cancer
• Patients identified as having nutritional disturbance should undertake regular nutritional assessment, including dietary intake, weight loss and body mass intake.¹³

Nutritional assessments are not necessarily routinely used in all hospice settings but perhaps this needs to be considered first-line in order to identify all patients at risk of nutritional issues. They should then continue to be screened regularly throughout their disease journey to prevent nutritional issues impacting on their functional status.¹⁴

Cachexia is another phenomenon seen in palliative care patients but is often misunderstood and undiagnosed. Cachexia is defined as “a multifactorial syndrome characterised by an ongoing loss of skeletal muscle mass (with or without loss of fat mass) that cannot be fully reversed by conventional nutrition support, and progressive 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”.⁹

The cachexia classification criteria are not routinely used for palliative care patients and therefore cachexia will often be unidentified. Should these therefore be used alongside nutritional assessments from the onset of diagnosis, in order to highlight from the earliest opportunity, those who are not only at risk of malnutrition, but also cachexia?

Moving forward

In order to continue advancing nutrition in the palliative care setting, we need to ensure that the patient’s nutritional status is a key feature in care plans, and therefore we need to ensure that dietitians are key members of the multidisciplinary teams in order to identify those at risk of nutritional issues. Nutrition should play a key part in all patient care regardless of their medical status. More resources need to be provided to be able to support and enable nutrition including adequate education for all members of the medical and nursing team, which will hopefully educate everyone on the importance of nutrition within the palliative stages. 

Nutrition counselling is considered the most appropriate first-line nutritional intervention for those with nutritional issues^15,16 and this was also supported by a recent review of the literature in patients with incurable cancer,¹² but the debate continues around the ethics of artificial feeding and what is the most appropriate route of nutrition for this patient group. Further research has to be undertaken to identify the most appropriate nutritional interventions for palliative care patients but also assess optimal timings of the delivery of nutritional interventions, as this continues to be unclear.

Furthermore, dietitians as the nutritional experts should be involved in nutritional research to provide the valuable sources of knowledge that they hold in regard to nutrition. 

Honor A Blackwood is a specialist dietitian at St Columba’s Hospice in Edinburgh, UK, and the Nutrition and Dietetics Department, NHS Fife, Dunfermline, UK; Charlie C Hall is a ST4 in palliative medicine at St Columba’s Hospice and the University of Edinburgh; Jane Wilson is a specialty doctor in palliative medicine at St Columba’s Hospice; Erna Haraldsdottir is director of education and research at St Columba’s Hospice and a senior lecturer in the Nursing Division at Queen Margaret University, Edinburgh, UK; and Barry J Laird is a consultant in palliative medicine at St Columba’s Hospice and a senior lecturer in palliative medicine at the University of Edinburgh 

References

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13. British Dietetic Association. What is a dietitian 2017? Available from: https://www.bda.uk.com/foodfacts/WhatIsDietitian.pdf
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15. National Institute for Clinical Excellence. Nutrition support in adults: oral supplements, enteral tube feeding and parental nutrition. 2006. Available from: https://www.nice.org.uk/Guidance/CG32
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