Ethics of providing clinically assisted nutrition and hydration: current issues

Abstract

The provision of clinically assisted nutrition and hydration (CANH) often presents clinicians with ethical dilemmas. As the population grows there is increasing prevalence of patients with conditions such as stroke, dementia, advanced malignancy, cerebral palsy and eating disorders and a greater demand for CANH. It is important that healthcare professionals are familiar with the ethical and legal position for the provision of CANH. In addition, it is important to be aware of the clinical indications, relative contraindications and alternative means of supporting patients for whom CANH is not appropriate; this includes education and training for staff, patients, carers and relatives. The lack of high-quality evidence around clinical outcomes, particularly in the form of randomised clinical trials, and the challenges of accurate prognostication in patients who are approaching the end of life make decisions around the provision of CANH difficult for healthcare professionals.

Key learning points.

• The ethics of feeding is complicated and challenging.

• The first question should be ‘what are we trying to achieve’?

• CANH can be appropriately given on a trial basis.

• A multidisciplinary approach is essential.

Introduction

It is estimated that 10 million people in the UK are aged over 65 years. This figure is set to rise to approximately 19 million by 2050.¹ Although life expectancy is rising, healthy life expectancy (ie, the number of years we can expect to live in good health) is declining with increasing incidence and prevalence of conditions such as cancer and dementia. It has been estimated that 1.3 million people aged over 65 are malnourished or at risk of malnutrition. One-third of people in this age group are found to be at risk of malnutrition when they are admitted to hospital, and the same proportion are discovered to be at risk on admittance to a care home.² The use of a validated nutrition screening tool such as the Malnutrition Universal Screening Tool is essential to identify nutritional risk and enable action to be taken at the earliest opportunity to reverse or delay the progress of malnutrition.

The artificial provision of nutrition and hydration either enterally or parenterally is termed clinically assisted nutrition and hydration (CANH). It often presents an ethical challenge to many clinicians; in the context of changing health and social demographics, this challenge is set to increase. The subject is incredibly emotive for patients, relatives and carers, and staff as the provision of food and water represent the most basic requirements for life.

Legal and regulatory position

The provision of food and drink by mouth is seen legally as basic care whereas the provision of CANH is considered a medical treatment. The patient possessing capacity as determined by the patient’s physician has the right to participate in decision making and to refuse treatment although a doctor is not obliged to give treatment which they consider futile or against the patient’s interests. There is often a delicate balance between professional judgement and patients’ rights which on occasion has been legally challenged. Clear guidance has been provided by the British Medical Association and the Law Society regarding gaining consent (see box 1).

Box 1. Gaining consent in adults¹⁵ .

A person should be able to:

• Understand in simple language what the medical treatment (or research intervention) is, its purpose and why it is proposed.

• Understand its principle benefits, risks and alternatives.

• Understand in broad terms what will be the consequences of not receiving the proposed treatment.

• Retain the information for long enough to make an effective decision.

• Make a free choice without pressure.

In the acute setting, the ethical challenges around providing CANH frequently involve patients who lack capacity with increasing pressure for clinicians to prescribe CANH for a number of reasons (see table 1). However, healthcare professionals should not be tempted to underestimate the patient’s capacity to make a decision and should make every attempt to assist this process.

Table 1.

Factors encouraging CANH

Party involved	Factors encouraging CANH
Relatives	Unwillingness to accept terminal prognosis. Belief in cruelty of dying process if ANH not administered. Need to demand interventions to avoid guilt.
Clinicians	Lack of familiarity with palliative care techniques and evidence. Length of time needed to educate families. Desire to avoid controversial decisions. Fears of litigation.
Others	Fear of regulatory sanctions if CANH not provided (nursing homes). Extra time and staff needed to assist with oral feeding.

Adapted from Brody et al.¹⁶

CANH, clinically assisted nutrition and hydration.

Patients who lack capacity

Decisions for young people (16–17 years) and adults (aged 18 years and over) who lack the capacity to consent to medical treatment in England and Wales are governed by the Mental Capacity Act 2005 (MCA). Within Scotland, decision-making is covered by the Adults with Incapacity (Scotland) Act 2000. The MCA specifies that any act done, or decision made, for a patient who lacks capacity, and does not have a valid and applicable advance decision to refuse treatment, must be done or made in their best interests. This means that a decision-maker must consider all relevant circumstances, including any wishes, feelings, beliefs and values of the patient. It is also important to recognise that a loss of capacity may be temporary or fluctuating; therefore, decisions regarding the provision of CANH may need to be assessed over a period of time.

The MCA requires that the decision should be that which, objectively, is in the best interests of the patient.³ Decision-makers must start from the strong presumption that it is in a patient’s best interests to receive life-sustaining treatment, but that presumption can be rebutted if there is clear evidence that a patient would not want CANH provided in the circumstances that have arisen.

Legally, family members cannot give consent to or refuse treatment on the patient’s behalf unless they have been formally appointed as donees of Lasting Powers of Attorney for health and welfare. Although not the decision-maker, they do have a crucial role in providing information about the patient as part of the best interest’s assessment⁴ and can refuse consent to the continuation of life sustaining treatment if this has been expressly stated.

In carefully specified circumstances, it can be necessary to enforce nutritional treatment; for example, in an unwilling patient with an eating disorder such as anorexia nervosa. Most patients with anorexia nervosa have capacity to make the decision to refuse food and as such the MCA does not apply; in this case treatment is enforced under the Mental Health Act.

Oral feeding dilemmas

If possible, the provision of adequate food and water taken by mouth should be the aim for all patients. When considering the provision of CANH the first question should be ‘what are we trying to achieve?’. If there is any doubt it is recommended that a trial of treatment is provided. A good example would be in the case of an acute stroke where the prognosis may be uncertain in the short term; however, without the provision of CANH the recovery and outcomes would be poorer. In contrast, for patients in an advanced stage of a progressive neurological disease such as Alzheimer’s dementia it has been shown that tube feeding does not prolong life and causes more complications than benefits.⁵

For many patients maintaining independence with eating and drinking for as long as possible remains important; and mealtimes continue to provide a key opportunity for social interaction and enjoyment as well as nutritional intake. Unintentional weight loss in the frail elderly is associated with higher rates of mortality, institutionalisation, adverse health outcomes, decline in functional status and overall poorer quality of life. A careful weight history is therefore paramount when considering the provision of CANH. The mechanisms of weight loss are multifactorial, but the prevalence of malnutrition often increases with disease progression; for example, in the later stages of dementia more than two-thirds of all those living with dementia are likely to be at risk of malnutrition.⁶ There is evidence that meal-time adaptations such as providing assistance and an appropriate environment for eating can slow the rate of unintentional weight loss; however, as disease progresses it is unlikely that malnutrition can be reversed and simply slowing nutritional deterioration through adapted oral intake should be seen as a positive outcome.

Many patients with oral feeding difficulties have communication or cognitive disabilities which affect understanding, retention and processing of verbal and written information and communication of needs. It is therefore imperative that appropriate measures have been taken to enable participation in discussions and decision making around long-term nutrition and hydration. Ideally, discussions and decisions about the provision of CANH for patients with progressive conditions should be made in advance of the point of clinical deterioration where CANH is being considered. It is recommended that decisions to provide CANH should be reviewed every 6 months (or every 12 months where the patient has been in a stable condition over a long period of time) and more often if the clinical situation has changed significantly.⁴

The term ‘feeding at risk’ or ‘risk-feeding’ is currently used to refer to oral feeding when people continue to eat and drink despite a perceived risk of aspiration. This approach is appropriate for patients unsuitable for tube feeding who have an unsafe swallow that is unlikely to improve and is often seen as a strategy that affords comfort, dignity and autonomy for patients.⁷

Many patients will require assistance to eat and drink. The majority of carers prepare all the meals for the person that they care for and 60% of carers express worry about the nutrition of the person they support.⁸ Carers may need training and support to ensure that they are using the correct techniques and are complying with guidance regarding preparation of consistency and the modification of food and fluid. If an individual is ‘feeding at risk’ then this decision needs to be documented with clear guidance for carers and healthcare professionals on how to assist the person with eating and drinking.

Withholding and withdrawing treatment

The ethics of refusing or withdrawing nutrition and hydration from sick or dying patients has a substantial history with theological discussions dating back more than 400 years; this suggests that there has always been a significant ethical dilemma to the provision of CANH. There have been a number of landmark legal cases in both the UK and USA that have helped shape the legal position regarding the withdrawal of treatment. The law regards withholding and withdrawing treatment as the same. There is no requirement for decisions to withdraw CANH to be approved by the court, as long as there is agreement on what is in the best interests of the patient, the provisions of the MCA have been followed, and the relevant professional guidance has been observed. There are, however, certain situations for example when there is conflict between professional judgement and the wishes of the legal guardian or family, when the courts need to be involved before any action is taken.⁹

There is legal guidance that can be helpful in supporting decision making about the provision of CANH in patients who are not imminently dying (see box 2).

Box 2. Suggested questions to support decision making regarding the provision of CANH¹⁷ .

• What is his/her current condition?

• What is the quality of his/her life at present (from his or her perspective)?

• What is his/her awareness of the world around him/her?

• Is there any (or any significant) enjoyment in his/her life? If so, how can this be maximised?

• Does he/she experience pain and/or distress and if so, is it appropriately managed?

• What is his/her prognosis, if CANH were to be continued?

• Is there any real prospect of recovery of any functions or improvement to a quality of life that he/she would value?

• What is the prognosis if CANH were to be discontinued?

• What end-of-life care would be provided?

The General Medical Council’s guidance states that a second clinical opinion should be sought where it is proposed, in the patient’s best interests, to stop or not start CANH and the patient is not within hours or days of death.¹⁰ There is sufficient evidence that the provision of parenteral nutrition is best provided by specialist nutrition teams and there is some evidence that the provision of enteral tube feeding support has less complications and better outcomes if managed through a specialist nutrition team.⁵ It is therefore appropriate that the opinion of nutrition support teams may be sought to assist in decision making around the provision of CANH.

Enteral nutrition

Enteral nutrition is commonly provided temporarily (ie, weeks) via nasogastric tubes (NGT) and over a longer period (ie, months to years) via gastrostomy tubes placed either endoscopically (PEG) or radiologically. The placement of a gastrostomy tube has recognised risks of mortality and morbidity but there is a lack of high-quality clinical evidence in the benefit of gastrostomy feeding in certain population groups. A Cochrane Systematic Review of PEG versus NGT feeding demonstrated no significant difference in mortality rates between the two groups. Furthermore, there was no significant difference between risk of aspiration although there was a lower risk of reflux oesophagitis in patients with a PEG. There was also no significant difference in outcomes relating quality of life, patient satisfaction, inconvenience of maintaining the intervention by nurses and functional ability.¹¹

Where there is doubt about clinical outcome and/or long-term nutrition and hydration requirements a trial period of feeding via NGT is recommended. It is often appropriate to seek a second opinion from members of the nutrition support team regarding the most appropriate long-term course of action. Different techniques are available to prevent the dislodgement of NGT such as tapes, hand mittens and nasal bridles. These will support the adequate provision of nutrition and hydration and will reduce the patient distress and clinical risk of repeated NGT insertion. Hand mittens and nasal bridles may be effective, but informed consent and the best interests of the patient need to be carefully considered.

Decision making in these circumstances is often complex involving many steps; decisions may evolve as the patient’s condition changes requiring re-referral and re-assessment. When tube feeding is continued outside hospital there is an ethical duty to ensure that the patient, daily carers and the community health team are adequately instructed in the technique and possible complications.

Parenteral nutrition

Home parenteral nutrition (HPN) is arguably more accessible than ever before. HPN is indicated in appropriate patients with a non-functioning gastrointestinal tract or patients in whom enteral feeding has been unsuccessful. The National Framework Agreement for HPN allows suitable patients to be discharged within five working days once they are stable on their HPN regime; acknowledging that gaining clinical stability may take several weeks in hospital. Over the last 5 years there has been a greater than 200% increase in new HPN patients. In 2015, the major underlying diagnosis for new patients with ‘gastrointestinal obstruction’ treated with HPN was malignancy (69%).¹²

Existing guidelines from the European Society for Parenteral and Enteral Nutrition (ESPEN) for cancer patients who require parenteral nutrition support suggest that patients with an expected prognosis of 2–3 months or greater are most likely to benefit from HPN, but a number of studies have shown that, despite variable selection criteria and guidelines, mortality at 3 months is approximately 50%. It is often extremely difficult to predict the length of survival and quality of life for patients being considered for HPN and there may be palliative benefits in providing HPN to patients with a shorter prognosis but with a good performance status. It is therefore paramount that informed decisions are made regarding prognosis and performance status. It is recommended that a recognised measure such as the Eastern Cooperative Oncology Group/WHO performance status is used.¹³

Feeding at the end of life

There is limited evidence for recommendations regarding nutrition in end-of-life care due to the challenges in undertaking intervention studies in this population. However, in the terminal phase of illness the inability or unwillingness to eat often creates significant anxieties for relatives and carers. It is important for healthcare professionals to support understanding that both the social significance of eating and the atmosphere created around eating may be more important at the end of life than the nutritional content of the food itself.¹⁴

In the dying phase, a patient’s desire for food and drink lessens. Good mouth care rather than attempting to feed a patient becomes a more appropriate intervention. It is important at this stage to consider the appropriateness of continuing either enteral or parenteral nutrition and attention to patient comfort and dignity should take precedence. The discontinuation of intravenous fluids must also be considered, as at this late stage it may only serve to exacerbate pulmonary oedema, peripheral oedema and increase secretions, which the semi-conscious patient is unable to manage. Clear reasons should be identified and recorded for withdrawal of nutrition and hydration and good communication between healthcare staff, relatives and carers is essential.

Conclusions and recommendations

CANH is regarded in law as medical treatment and should therefore be considered in the same way as any other medical intervention. Patients, relatives and carers cannot demand treatment, but patients can refuse treatment. For patients who lack capacity there is clear guidance for healthcare professionals to support best interest decision making. This review has highlighted the complexity of providing CANH in both the short-term and long-term. There is a lack of high-quality clinical evidence but it is recommended that decisions are made on a case by case basis involving a multiprofessional team with experience of providing CANH. As patients approach the end of life priority should be given to supporting quality of life over and above nutritional intake and may involve supporting patients, relatives and carers to ‘feed at risk’ in preference to the provision of CANH.