A common feature in palliative care is reduced oral intake, and patients may require additional support to ensure they receive adequate nutrition and hydration.
As disease progresses, deterioration in symptoms particularly those involving fatigue, muscular weakness and dysphagia can make eating more difficult, and this can impact patients not only physically but also psychologically.1
Thus nutrition management requires an understanding that in addition to providing nutrients, nutrition has important psychological, as well as social and cultural meaning.
Food is typically associated with health and wellbeing, so for those struggling to eat or their carers this can invoke a sense of fear and concern.
The impact of losing the ability to eat and drink can have a profound effect on the patient’s quality of life, including their relationship with partners and relatives.2
The nutritional objective in palliative care should be about quality of life including comfort, symptom relief and enjoyment of food.3
Whilst it is important to prevent or treat avoidable malnutrition, it is also important that nutritional support measures are not so invasive or unacceptable that they impair quality of life.
The Care Quality Commission requires that every healthcare establishment should meet their patients’ nutritional needs and stipulates the need for nutritional assessments.4 However, palliative patients have complex and varying needs regarding their food and nutrition.
Decisions concerning nutrition should always be person-centred, individualised and open to change in line with any change in condition.1
It is important that the person is assessed appropriately and that symptoms potentially affecting their intake are identified.
Suitable nutritional interventions may include food or drink modification, for example with dysphagia (see below), and oral nutritional supplements.
Within end-of-life care there may be few areas as medically, ethically, and culturally complex as providing hydration and nutrition.2
For patients in the later stages of terminal illness, the goal of nutrition therapy is unlikely to be focussed on maintaining energy intake, weight gain or reversal of malnutrition and while feelings of hunger and thirst must still be met, nutrition should be tailored to their symptomatic needs and be primarily intended to support comfort and quality of life.5
Aggressive feeding may not be appropriate, especially if eating and drinking cause discomfort or anxiety to the patient.5 However, in some settings patients feel connected to others by the thread of sharing food and drink, even if only in a small or symbolic way.6 Meaningful interactions between the patient, caregivers, and the medical team are important to help fulfil each patient’s specific needs and thus improve quality of life.
There may be a point reached where adequate nutrition can only be maintained by artificial feeding, ie giving nutrition and hydration with medical assistance.
A Cochrane review in palliative patients assessed the effects of artificial hydration and nutrition, and reported no randomised controlled trials in this area to support recommendations.7 Rather, decisions need to be made on the perceived benefits, harms, risks and burdens of artificial nutrition support in individual patient circumstances.
As the primary goal of treatment in terminal care is the comfort of the patient, decisions concerning whether or not to use artificial feeding must be made on this basis.
The independent review of the Liverpool Care Pathway for dying patients More Care Less Pathway states that the default course of action should be that patients are supported with hydration and nutrition, unless there is a strong reason not to do so.8
From a medical perspective, the General Medical Council (GMC) has issued clear guidance on meeting nutrition and hydration needs in end-of-life care, but more is needed on supporting oral, rather than artificial, nutrition and hydration.9
The offer of food and drink by mouth is part of basic care (as is the offer of washing and pain relief) and should always be offered to those who are able to swallow without risk of harm such as choking or aspirating food or drink.
The review makes the point that there is no moral or legal obligation to continue to administer clinically-assisted nutrition or hydration if they are having no beneficial effect.8 But there can be no clinical justification for denying a drink to a dying patient who wants one, unless doing so would cause them distress. Refusing food and drink is a decision for the person, not clinical staff, to make.
Hydration and dysphagia in palliative care
- Signs of dehydration should be checked for every day and help should be given to keep the patient’s mouth and lips moist
- People who do want to drink should be given help to carry on drinking if they can still swallow. While they are drinking, it is important that they are checked for problems with swallowing
- Some people may not want to drink in the last days of their life, and swallowing may become difficult
- Artificial hydration may be suggested (fluids through a drip or tube) if it could make the patient more comfortable
- However, for a person who is already at the end of their life, it won’t necessarily help them live longer, and it might not be the best option for everyone
- Some consider that simple measures such as attention to oral hygiene are sufficient to prevent discomfort and intravenous hydration at end stage is unnecessarily invasive
- Dysphagia requires expert assessment and management in order to provide an appropriate fluid consistency while also maintaining nutrient intake
- In an ‘unsafe swallow’ altering the consistencies eg thickening fluids, may make feeding manageable and preserve quality of life. However, an individual with dysphagia may be unable to have sufficient food or fluid intake and there may be emotional and psychological problems associated with not being able to eat normally
- The decision-making process regarding whether to provide artificial nutrition and hydration or continue to allow modified food and drink by mouth with swallowing issues can be difficult
- A collaborative, multidisciplinary approach is needed to ensure a comprehensive approach is applied in relation to dysphagia management, considering the risks and benefits of eating and drinking for each individual to enable optimal quality of life.
Ayela Spiro is a nutrition science manager at the British Nutrition Foundation