Analysis

Nutritional care: steps to support patients with eating and drinking difficulties

We explain the latest guidance on assessment and care, especially for those at the end of life

We explain the latest guidance on optimal assessment and care, especially for patients at the end of life

  • Increasingly complex problems and an older population present new challenges in decision-making regarding nutrition and hydration
  • Factors that affect eating and drinking, and what to consider when assessing your patient
  • How ethics and the law influence decisions regarding capacity, and how to use the RCP guidance to improve your practice

Sarah is 68 years old and was diagnosed with dementia two years ago. She lives at home where she seems quite happy and mobilises freely.

But she has lost 30% of her body weight in the past six months and there

...

We explain the latest guidance on optimal assessment and care, especially for patients at the end of life

  • Increasingly complex problems and an older population present new challenges in decision-making regarding nutrition and hydration
  • Factors that affect eating and drinking, and what to consider when assessing your patient
  • How ethics and the law influence decisions regarding capacity, and how to use the RCP guidance to improve your practice
Picture: iStock

Sarah is 68 years old and was diagnosed with dementia two years ago. She lives at home where she seems quite happy and mobilises freely.

But she has lost 30% of her body weight in the past six months and there are concerns within her family that without clinical intervention and a gastrostomy she will die of starvation.

Guidance on supporting people with eating and drinking difficulties

Sarah’s case is included in recent guidance from the Royal College of Physicians (RCP) on supporting people who have eating and drinking difficulties. Compiled by a working group that included specialist nurses, doctors and dietitians, the guidance has a focus on end of life care.

The case studies it describes are illustrative rather than real, but they exemplify common dilemmas and are intended to guide practice. In a case such as Sarah’s, for example, clinicians are encouraged to consider any distress that the patient not eating causes them and their family.

How can a consensus on long-term nutritional support be reached?

Major changes in patient populations over the past 20 years have brought problems associated with eating and drinking into sharp focus.

An older demographic, with increasingly complex problems, presents challenges in decision-making regarding nutrition and hydration.

Chief Admiral Nurse and chief executive of Dementia UK Hilda Hayo says: ‘Our population is ageing and increasingly living with long-term conditions, including dementia, which can cause difficulties with eating and drinking, particularly at the end of life.

‘This can be stressful for families and healthcare professionals alike.’

It is these kinds of challenges, against a backdrop of changing legal and ethical issues, that the RCP document seeks to address.

Factors that affect eating and drinking

The ability to eat and drink appropriately contributes to overall health, but is finely balanced. There are many determinants of successful eating and drinking, and impairment of any one of them can affect these processes.

Among those determinants are:

  • Consistency of food and fluids.
  • Ability to use cutlery.
  • Vision.
  • Dentition (the condition of a patient’s teeth or dentures).
  • Mood.
  • Insight.
  • Posture.
  • Pulmonary function.
  • Integration of breathing and swallowing.

Successful eating and drinking is therefore a complex sequence. A lot can go wrong, even before the person attempts to eat or drink.

For example, in Alzheimer’s disease, agitation, restlessness and changed responses to food can all affect nutritional intake. Dyspraxia, a condition which affects physical co-ordination and fine motor skills, can impair voluntary initiation of swallowing. And patients who have experienced a stroke may have reduced control of the hand or arm, while paralysis of the face, lips or tongue will affect chewing and swallowing.

Assessment should cover the individual’s history of self-feeding, assisted feeding and ‘risk feeding’ Picture: iStock

Undertaking an assessment

History-taking, observation and clinical examination combine to formulate a successful assessment.

The RCP guidance says the history given by patients and carers can be valuable, as well as records of oral intake and previous weight loss.

Conventional observation may be supplemented by video recordings of self-feeding, assisted eating and drinking, and of carers feeding the individual.

‘It’s really important to get a feel for your patient and perhaps not be tied in to thinking it’s one particular thing that’s affecting their nutrition and hydration’

Claire Campbell, nutrition clinical nurse specialist and National Nurses Nutrition Group chair

Examination and assessment should cover risk too, the document says. Testing a person’s ability to eat and drink inevitably involves risk, including aspiration and unacceptable coughing.

It says ‘risk feeding’ refers to when individuals continue to eat and drink orally even though there is a perceived risk of aspiration or unacceptable coughing. Examples of risk feeding include a person with capacity who makes the decision to eat and drink orally despite knowing that to do so involves risk; and situations where assisted nutrition – tube feeding, for example – is declined or not appropriate.

Risk feeding decisions may be necessary in some situations and should carefully balance safety against the individual’s quality of life.

‘In any “risk feeding” decision, there needs to be a calibration between being risk-averse and placing carers in an impossible position in the name of patient autonomy,’ the guidance states.

Social interaction at mealtimes and food as pleasure

Picture:iStock

Throughout the RCP guidance, there is an emphasis on the importance of food and mealtimes as opportunities for pleasure and social interaction.

Meals are often an expression of cultural identity as well.

Nutrition clinical nurse specialist Claire Campbell, who chairs the National Nurses Nutrition Group, says ‘food for pleasure’ is an aspect of nutrition and hydration that is often overlooked, especially in hospitals.

She recalls an inpatient whose appetite diminished so much while she was in hospital that a nasogastric tube was used to support her nutrition.

‘When I phoned her at home after she’d been discharged, she said it was almost as if someone had switched on her appetite as soon as she walked in the door. She was eating and drinking again.’

Ms Campbell, who works at Frimley Health NHS Foundation Trust, says in hospitals nutrition can become a tick-box exercise. ‘But it’s not just about getting the food in, it’s the social aspects too – having conversations when we’re sitting at our dinner tables with our families. That’s a really important part of a mealtime.’

Getting patient communication right

Another core theme in the RCP guidance is effective communication with patients. This requires time and, with some patients, the ability to engage in complex negotiation on emotive topics, such as the gradual loss of ability to eat, drink and participate in meals (see box below).

Cognitive disabilities may affect patients’ understanding and retention of information.

The guidance recommends that discussions related to advance care planning (ACP)and nutrition and hydration are best initiated during routine, non-emergency care.

ACP should also be guided by the patient’s wishes and never ‘by reference to blanket policies about categories of people’.

Several short conversations may be more productive than one long session, the guidance says
Picture: iStock (picture taken pre-COVID-19)

Practical measures to support patient communication

Measures recommended in the Royal College of Physicians guidance to support effective communication with individuals regarding eating and drinking include:

  • Awareness of any communication or cognitive impairments
  • Familiarity with how the patient communicates
  • Use of communication aids, such as alphabet charts and hearing aids
  • Use of interpreters where required
  • Accessible written and pictorial information, including leaflets and online videos
  • Allowing sufficient time to explain information
  • Having several short conversations rather than one lengthy session
  • Access to a quiet, private environment
  • Choice of an appropriate time of day – for example, early morning if the patient tires in the afternoon

Oral nutrition support strategies

Many life-limiting conditions and treatments can affect a patient’s intake of food and drink, with problems often compounded by pain, breathlessness and fatigue. Consequently, the enjoyment derived from eating and drinking can decline.

In such cases, oral nutrition support strategies may prove helpful, the guidance says, and are always the preferred option ahead of tube feeding, for example. These strategies include:

  • Fortification of food and drinks.
  • Use of snacks and finger foods.
  • Use of nourishing drinks and oral nutritional supplements.

But advising patients and carers on diet can be complex, with many factors to consider, the guidance notes (see image below).

Factors to consider in supporting patients’ nutritional needs PIcture: RCP

The process becomes even more complicated when the patient is very sick or has limited cognitive ability.

Therefore, the involvement of dietitians is crucial. The guidance emphasises multidisciplinary approaches throughout, and says dietitians have a vital role not only in advising patients but in educating healthcare professionals, including nurses.

Posture and protecting the airway

Alongside oral nutrition support, positioning and postural strategies may help in protecting the airway and reducing the risk of aspiration.

Rotating the head to one side and tilting the head are among the strategies suggested in the guidance.

Modifying the texture of food and fluids, and serving them in small, appetising portions, can also enhance the patient’s experience of eating and drinking.

These strategies are all especially relevant when caring for people with dementia, where maintaining independence with eating and drinking for as long as possible is important.

More than two thirds of those with dementia are at risk of malnutrition, the guidance says.

Posture, portion size and food preferences can all affect patients’ mealtime experiences Picture: iStock

Clinically assisted nutrition and hydration

Clinically assisted nutrition and hydration (CANH) refers to all artificial nutrition support.

The decision to use CANH can be complex, the RCP says, and should take careful account of individual circumstances.

It should be considered in people who are malnourished and in those at risk of malnutrition, as defined by either of the following:

  • The patient has eaten little or nothing for more than five days and/or is likely to eat little or nothing for the next five days or longer.
  • The patient has a poor absorptive capacity, and/or has high nutrient losses and/or increased nutritional needs from causes such as catabolism (the metabolic process by which complex molecules are broken down into simpler ones and energy is released).

The guidance explores in detail clinical and other issues associated with different forms of CANH, including nasogastric and gastrostomy tubes, and parenteral nutrition.

It also includes a section that addresses questions relating to tube feeding in people with dementia (see box below).

Tube feeding in people with advanced dementia

Does tube feeding prevent the consequences of malnutrition?

It is unlikely that either malnutrition or dysphagia can be reversed in advanced dementia, where relationships between nutritional intake, markers of nutritional status and clinically meaningful outcomes are uncertain. For some patients, the nutritional benefits of tube feeding may be outweighed by its adverse effects.

Is survival improved by tube feeding?

Studies have shown no survival benefit in tube-fed patients with advanced dementia, even after adjustment for factors such as age and cognitive status.

Is the risk of other infections reduced by tube feeding?

There is no evidence of reduced urinary, gastrointestinal or other infections.

Does tube feeding improve patient comfort?

There is no evidence that patients with advanced dementia and dysphagia are more comfortable with tube feeding. But slowing nutritional deterioration is a positive outcome of tube feeding.

Source: Royal College of Physicians guidance

How the law and ethics influence care decisions

Capacity and best interests are two key concepts in decisions related to medical treatment in adults, including CANH.

The RCP guidance is framed by reference to the law in England and Wales, and although the clinical principles are the same in Scotland and Northern Ireland, the law is different.

The Mental Capacity Act sets out the legal framework for determining capacity and for making decisions on behalf of those who lack capacity. The act also includes a checklist of key considerations when assessing best interests.

This checklist, summarised in the RCP guidance, cautions that healthcare professionals must not discriminate or make assumptions based on a person’s age or condition.

In a separate section on ethics governing nutrition and hydration, the guidance says when making decisions, the healthcare team should ensure the patient is always at the centre of discussions.

It stresses that a consensus of ethical opinion and legal precedent accepts that CANH represents medical treatment rather than basic care.

‘As such, ethically and legally, it can be withheld or withdrawn if it is thought not to be in the patient’s best interests,’ the guidance states.

Ms Campbell says this chapter, drawn up with legal advice, is especially important, not least because of its precision around terminology.

‘It helps reassure nurses, clinicians and other members of the multidisciplinary team. And it also provides transparency and clarity for patients and their carers.’

Claire Campbell: ‘Dip in and out and use the sections you need’

How nurses can use the guidance to improve their practice

Ms Campbell says nurses should use relevant sections of the RCP guidance to inform their clinical practice.

‘You don’t have to read it cover to cover and absorb everything. Dip in and out and use the sections you need. Certainly, that’s how I use it.’

She suggests that a key message from the document is to initiate early conversations about nutrition and hydration.

‘It’s really important to get a feel for your patient and perhaps not be tied in to thinking it’s one particular thing that’s affecting their nutrition and hydration.

‘Very often, it’s multifactorial. So an individual’s loss of appetite, lack of interest in food or symptoms of dysphasia, are these in keeping with what you think is going on? Or is there something else that you need to be addressing?’


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