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Giving or Withholding Fluid and Nutrients: Ethical and Legal Aspects

When a patient does not or cannot drink or eat enough to maintain adequate hydration or nutrition, fluid with or without nutrients can be given through a tube. In law, a tube feed for an adult is regarded as a medical treatment that can be refused, withheld or withdrawn. Legal requirements and ethical principles of conduct are discussed in relation to a patient's ability or wish to drink and eat, and the administration of fluid with or without nutrients by tube. Emphasis is placed on adequate consultation from the outset with each competent patient, between all members of the health care team, and with those closest to an incompetent patient.

The ethical and legal duty of basic clinical care includes attention to drinking and eating, hygiene and simple measures to promote comfort and relief of symptoms. When there is no reason why not, a person who can swallow and who expresses a desire or willingness to drink or eat should always be encouraged and, if necessary, assisted to do so and be supplied with appropriate fluids and nutrients.

Drinking
Some patients cannot or do not swallow enough liquid to preserve normal hydration despite every encouragement and assistance. The response to a patient's failure to drink enough fluid depends on whether the aim of care at this stage of illness is to prolong life or provide comfort. Drink ing physiological amounts does not always appear neces sary for comfort in the last stages of life. The fluid deficit may cause a dry mouth but this can often be relieved by sips of fluid or local measures1-4. In this situation, enforced drinking is unnecessary and intrusive. The ethical situation is not that the patient is failing to drink and therefore will die, but that the patient is dying and therefore does not wish to drink5.
Occasionally, patients refuse fluids as they wish to hasten death; indeed, one writer describes the peaceful death of his mother which she brought about in this way6 7. A difficult situation arises when patients in the late stages of dementia do not drink or swallow despite all efforts to introduce fluid orally. Great sensitivity is required in consultation with nurses and other carers, and with the family, to determine whether this situation should be accepted as a terminal phase of the illness or regarded as a clinical problem to be overcome by fluid administration through a tube8-9.

Eating
Some patients may wish to eat enough but cannot do so because of difficulty in chewing or swallowing. Other patients can swallow but do not eat enough because of poor appetite, apathy, depression, weakness, a desire to restrict body weight, or social reasons. Normal care needs to maximise a patient's food intake by simple but often time consuming measures such as encouragement, assistance, adopting an appropriate posture, allowing adequate time and providing a good environment for meals. The food itself needs to be appetising, high in energy content, appropriate in amount at each meal, of the correct consistency for the patient's need, and provided in frequent small portions or snacks.
As with drinking, people at the end of life may eat little6; this is a natural phenomenon that can be accepted. Some demented patients may not swallow food during the late stages of their illness. If the comfort of the patient is the major consideration, refusal of food or inability to eat may be accepted. The responsibility for this decision rests with the doctor, but full consultation is mandatory with the family and other carers before such a decision is taken.
People may refuse to eat, eat little, or fail to eat nutritious foods in eating disorders such as anorexia nervosa (see below). The ethical issue in these cases concerns how much such patients should be cajoled or persuaded to eat against their wish. As a form of political protest, in many countries a competent person can refuse food until death occurs, though not in Israel10 where legal opinion has ruled that preservation of life takes precedence over individual autonomy.

Eating food plus a medicinal supplement
There is good evidence that severely malnourished people who are ill, for example after operation for a fractured hip, benefit from specially prepared nutritional supplements prescribed as an addition to ordinary food11. It has also been shown that provision of a regular liquid nutritional supple ment reduces or avoids weight loss and decreases mortality among elderly people in residential care12. The cost, con venience and patient compliance related to the provision of such regular supplements has to be balanced against the practicality of improving nutrient intake through ordinary meals and snacks. When a patient is dependent on drinking a liquid nutritional supplement, withdrawal can lead to death from malnutrition, which can be criticised as a lack of basic care13.

Tube feeding and the law
The House of Lords and equivalent courts elsewhere have ruled that a tube feed is a medical treatment14-16. This position has been accepted by the British Medical Associa tion (BMA)17 and is cited in a report co-authored by the British Geriatrics Society and the Royal College of Nursing1. Arguments against this legal definition have been put forward by some who regard tube feeding as an extension of basic care1819. Similarly, the use of enteral tube feeding for premature or unwell infants is regarded by some profes sional carers of neonates as analogous to a bottle feed and thus as part of basic care20.
The legal position on hydration without nutrients by tube is not so clear because this is a short-term treatment and the cases that have come to court have all concerned long-term administration of fluid with nutrients.

Withholding or withdrawing fluid given by tube
There is no ethical distinction between withholding or with drawing treatment21 but in practice it is more difficult to withdraw a treatment once begun than not to start it. Consequently, there is sometimes reluctance to commence hydration or nutrition by tube for fear that it will be difficult to stop. An approach to this problem can be to start treatment as a time-limited trial with a defined goal22 23. For example, the goal may be to maintain physical condition to allow time for improvement of cerebral function. In this sense, a treatment can be regarded as 'futile' if it is unlikely to allow recovery of the neurological deficit, a probability that ideally can be expressed numerically24 and which diminishes the longer treatment is continued without recovery. Alternatively, a treatment may be regarded as 'futile' in a qualitative sense if it does not benefit a patient's quality of life or is even a burden.
Religious, ethical and legal opinion all agree that a deliberate act to kill a patient is wrong and unlawful21. Omission of a treatment, on the other hand, may allow death to occur as a consequence of the disease process. Logical analysis can show that the intention of an act to kill or deliberate omission of treatment is often the same, namely to shorten the period of dying25; many authors have discussed this issue16'23'26-30. A clear example of a deliberate omission of treatment is to withdraw hydration and nutrition by tube from a patient in irreversible coma or a vegetative state. Reports of such events describe a peaceful death, within a week or two of fluid deprivation31'32. This mode of death from impaired excretion and biochemical disturbance differs from the common perception of a person 'starving to death'.
In appropriate circumstances, judgements have declared that such an action is legal because continued treatment is 'not in the best interest' of the patient14. In making a clinical decision, it is essential for a doctor to exercise a professional role in assessing the success or failure of the treatment to achieve a clinical goal, taking into account the quality of the patient's life.

Competence
A competent adult has the legal right to refuse a treatment I721-33, even if to others the decision appears irrational. Competence in law entails the ability to under stand the decision to be taken and requires that the person be able to comprehend and retain the information relevant to the decision, believe it and weigh it in the balance so as to arrive at a choice34. It is recognised that assessment of competence can be difficult, and that competence, or the ability to communicate, may vary from time to time, even during a day, in a person who is ill3033. Treatment or the elapse of time may be needed for competence to be regained.
Carers need to recognise that they have an unequal relationship with a person who is ill and is thus dependent and vulnerable23. Guidelines published jointly by the BMA and the Law Society33 state that when a doctor's opinion of the patient's best interests conflicts with what the patient wants, it is ethically and legally wrong for the doctor to underestimate the capacity of the patient in order to achieve what he/she believes to be in the patient's best interests. Some patients state their wish to accept the advice of those who care for them; this situation is common, and a patient's decision to leave choice of treatment to carers should be respected.
For an incompetent adult the final arbiter of treatment is the doctor responsible for care, who must make a decision in the patient's best interests35. When mentally competent before the illness, adults may indicate in an advance state ment (living will or advance directive) what medical treat ment they wish to refuse should they become mentally incapable. Most legal opinion would regard such a directive as binding in law provided that these persons had the mental capacity to make the decision at the time it was made36. The BMA has put forward a code of practice37 and the current situation has been reviewed with comments on potential problems by specialists in care of the elderly38.
A discussion paper was issued by the government in 1997 after which legislation is likely to be proposed that gives legal force to an advance directive and allows adults to appoint a proxy to make health decisions on their behalf if they become unable to do so39. Under present English law, a relative cannot make a decision on behalf of an adult patient, though an opinion about the patient's likely wishes is helpful35. However, there is concern that such legislation would make a person's advance refusal of hydration and feeding by tube legally binding on health carers when such a decision is inappropriate in circumstances that could not be predicted40. Vigorous discussion on this issue is likely when the proposals are debated.
Finally, a parent makes a decision on behalf of a child or young person until the age of 16 save only in exceptional circumstances41. The complexities of childhood consent are well reviewed in a report of the Royal College of Paediatrics and Child Health42 and in the guidance issued jointly by the BMA and the Law Society33.
In the rare cases when the view of a court is sought regarding treatment or non-treatment, the court does not issue a directive but forms a declaratory judgement as to the legality of any action proposed by a doctor.

Difficult clinical decisions and the need for professional consultation
A health care team includes many professionals, each of whom contributes a particular expertise. A doctor, whose role is to assess all the circumstances and decide on treat ment, needs to consult not only the patient (or relatives if the patient is incompetent), but also colleagues in the team. Members of the team need an opportunity to express their view about any potentially contentious treatment plan6-3043. Unanimity may not be possible but all opinions should be valued. If need be, an opportunity should be available for a person to opt out of a course of action on grounds of conscience.
In the USA, and in at least one hospital in England, an ethical committee can play a role in difficult clinical decisions about individual patients44. The model of trained, perceptive lay persons who can assist relatives and clini cians in an objective, yet sensitive manner when difficult decisions have to be made in the clinical management of incompetent patients, may be applicable in this country.

Hydration through a tube
The aim of giving fluid through a tube into the stomach, rectum, subcutaneous tissue or a vein is usually to maintain adequate body fluid content and excretion. If fluid without nutrients is started, for example soon after a stroke, it is essential that the policy should be reviewed within a few days to avoid the patient becoming malnourished45. If with drawal of the tube is contemplated but the patient's fluid intake will be low, it is essential that the reason for with drawal should be discussed fully with nursing staff and other carers630. The patient, family and carers need to realise that withdrawal of the tube does not signify aban doning compassionate care, rather that future efforts will concentrate on personal attention and relief of symptoms46.
There has been discussion on the ethics of withholding hydration by tube when a person does not drink because large doses of pain relieving drugs or deep sedation are needed for the relief of severe symptoms just before death47-49. It is questionable whether such patients experience thirst, and unlikely that dehydration is a major factor in their death49'50. However, if there is any doubt about the development of thirst, or if the relatives are distressed by the patient's inability to drink, despite explanation and discussion, fluid to relieve possible thirst can be given simply by subcutaneous or rectal infusion48'50.

Tube feeding
A fine-bore nasogastric tube is relatively free of risk but is visible and can cause irritation around the nose and face. A gastrostomy tube, introduced endoscopically, radiologically or surgically, is associated with some risks and a small mortality51, but is easier to manage for carers, enables full feeds to be given regularly (whereas feeds are often in complete through a nasogastric tube) and is socially more convenient52 53. The prime aim of enteral tube feeding when swallowing is difficult is not to avoid pulmonary aspiration but to give adequate nutrition54-57. Since the risk and cost of intravenous (parenteral) tube feeding are both high, it is now generally agreed that this treatment should be used only when intestinal absorption is so impaired that adequate absorption via any enteral route cannot be achieved.

Tube feeding not considered or withheld
Tube feeding may be disregarded if the patient has other more pressing needs26 or if carers fail to recognise the need for it, in which case there is a failure to give optimal treat ment. Tube feeding may be inappropriate when the aim of care is palliative to provide comfort and relief of symptoms6'30'58 '59. In general, treatment should not be withheld by carers on grounds of a patient's age21'22'3060, life-style, or the presence of mental or physical disability. There are situations in which the benefit of tube feeding is doubtful, such as the late stages of AIDS or cancer61. The ethical priority in such situations is to conduct research into therapeutic outcomes, especially length and quality of life with and without treat ment. Such trials show where nutritional treatment is helpful and, conversely, protect patients from ineffective treatment and enable limited medical resources to be deployed for optimal use.
A difficult situation may arise when a patient or relative expects or demands hydration or nutrition through a tube against the carer's judgement of what is in the patient's best interest. Such cases are now coming to the courts in the USA62, where the matter has become a subject for vigorous ethical and legal debate63. The sanctity of human life is a strongly held belief and some believe that any evidence of biological life must be preserved; for example, Orthodox Jews do not accept brain stem death64. The basis of refusal to give a tube feed in exceptional circumstances65 is to pre serve professional integrity, because to give an ineffective treatment conflicts with the goals of practice66.

Tube feeding not accepted or refused
Difficulty with tube feeding may ensue if a patient cannot or does not co-operate. A semiconscious or demented patient may remove a nasogastric, and even a gastrostomy67 feeding tube. An ethical problem arises as to whether or not restraint, which appears to violate patient freedom, should be used58; if possible the tube should be fixed and protected in such a way that the patient cannot displace it. During prolonged parenteral nutrition at home, a patient is occasionally encountered who allows septicaemias or other dangerous complications to occur by omission of precautions or deliberate action. This behaviour can be interpreted as implied refusal of such demanding and socially restrictive treatment. Alternatively, it may rep resent a psychiatric disturbance for which appropriate measures are needed.

Tube feeding enforced
Patients with eating disorders, who starve themselves and refuse tube feeding despite explanation of the possible dangers of their action, pose the ethical dilemma of indi vidual autonomy versus clinical benefit. In England, anorexia nervosa is recognised as a mental disorder under the provisions of the Mental Health Act, 1983. Under the Act, compulsory detention in hospital can be effected in certain circumstances if this appears necessary for diagnosis and/or treatment. An application is usually made by an approved social worker with the recommendation of two doctors, one of whom is approved under the Act41. The question of enforced tube feeding is a separate issue. The Act permits, in certain circumstances, enforced treatment of the mental disorder for which the patient is detained. The question has arisen as to whether giving nutrition consti tutes treatment of anorexia nervosa. Clinically, malnutrition leads to depression and apathy, both features of the mental state. In English law, it has been accepted in one judgement that nasogastric feeding is a medical process, forming an integral part of the treatment for anorexia nervosa68; and in a related case that tube feeding constitutes medical treat ment that can be carried out lawfully without consent under the Act69. Guidance on this issue with reference to the Act and the relevant court judgements is available from the Mental Health Act Commission70.

Tube feeding withdrawn
No ethical problem arises when tube feeding is withdrawn because of success. The ethical problem arises when it maintains or increases body tissue while other bodily functions remain impaired or fail. For example, it is possible to maintain nutrition and prevent muscle weakness due to malnutrition in motor neurone disease, but the neurological disorder progresses and is an untreatable cause of muscle weakness. There may come a stage in the illness at which nutrition is no longer important and the neurological cause of muscle weakness predominates. Similarly, nutrition can be maintained after a stroke but cerebral function may fail to improve or deteriorate due to further cerebrovascular episodes.
Recent controversy has centred on the ethical problems associated with a persistent vegetative state because such patients are on the borderline between life and death71. The clinical features of this condition71-73 render enteral tube feeding essential for prolonged survival. Cerebral function and prognosis are particularly difficult to assess and pro longed, skilled observation, preferably in a unit dedicated to the purpose, is needed74. In view of these difficulties, legal approval to discontinue artificial hydration and nutrition has been sought. English judgements1415 have stated that it was not unlawful for doctors to withdraw life-supporting medical treatment, including nasogastric tube feeding, from a patient in a persistent vegetative state who had no prospect of any recovery or improvement. It was recom mended that application should be made to the court in each case where there was no prior valid consent by the patient for stopping treatment. The views of the next-of-kin or of others close to the patient cannot act as a veto to an application to the court but they must be taken fully into account as a matter of good clinical practice.
The Official Solicitor75 in England has issued guidelines on the procedure to be followed in seeking legal sanction for the withdrawal of artificial feeding and hydration. A diagnosis of 'permanent' vegetative state may not be made until the patient has been in a continuous vegetative state following head injury for more than 12 months or following other causes of brain damage for more than six months. There should be at least two independent reports on the patient from neurologists or other doctors experienced in assessing disturbances of consciousness, one of which will be commissioned by the Official Solicitor. Assessors must ask about the reactions and responses of the patient and take note of the descriptions and comments given by rela tives, carers and nursing staff who spend most time with the patient. It is emphasised that there is no urgency in making the diagnosis and if there is any uncertainty in the mind of the assessor then reassessment should be under taken at a later date.
These factual statements take no account of the emotional turmoil over a prolonged period experienced by the patient's family32. Withdrawal of tube feeding also has a profound emotional effect on carers. In one reported case, the nurses were more assiduous than ever in their detailed care until the patient died after nine days, and were able to cope with the situation only because they believed that they were doing the best for their patient and his family31.
Enteral or parenteral tube feeding continued in the community Tube feeding at home or in residential care places a particu lar burden on the patient and non-professional carers. This matter should be considered carefully in hospital before long-term treatment is started. Ethical considerations of quality of care require that the patient and carers should be adequately trained and supported by good liaison between all professionals involved, both in the community and in hospital. Regular re-assessment should be ensured. Deci sions about continuing or withdrawing treatment do not differ from those already discussed, but should involve, whenever possible, the patient's view and all those concerned in care.

SUMMARY AND RECOMMENDATIONS
1 A patient who can swallow, and expresses a desire or willingness to drink or eat, should be encouraged and assisted to do so and provided with appropriate fluid and nutrients as part of basic care.
2 Carers concerned with nutrition should work together as a team; each discipline contributes a different skill and each carer has a view on ethical issues.
3 A treatment plan regarding fluid and/or nutrient provi sion should be made for any patient with an existing or probable future fluid or nutrient deficit.
4 If the plan is to maintain an adequate intake, appropri ate measures should be taken, with the patient's consent, to achieve this.
5 If the plan is to provide compassionate care for relief of symptoms during the terminal phase of illness, oral fluid and food should be given according to the patient's wishes and ability to swallow; fluid given through a tube should be given only if it is needed to relieve thirst. 6 In law, a tube feed for an adult is regarded as a medical treatment. However, some professionals consider tube feeding, especially of infants, to be part of basic medical care.
7 Consent of a competent adult patient must be sought for any treatment, especially an invasive measure such as hydration or feeding through a tube, and refusal is binding.
8 For an incompetent adult patient, the doctor under taking care is responsible in law for any decision to withhold, give or withdraw a medical treatment. Any previously expressed views about the type of treatment the patient would wish to receive, especially if there is written corroborative evidence, carry weight. Full consultation with the family and the health care team is needed from the outset, but under present English law, relatives or a nominated proxy cannot make a decision on behalf of an adult patient. Special considerations apply regarding the responsibility of parents to make a decision on behalf of their child, and consent for treatment by adolescents.
9 Application to the court should be made regarding the legality of withdrawing a tube feed from a patient in a vegetative state.
10 Under carefully specified circumstances, it can be legal to enforce a tube feed for an unwilling patient with mental disorder, including anorexia nervosa.
11 When considering possible long-term tube feeding for a patient after discharge from hospital, the patient's mental, physical and social circumstances should be carefully assessed, taking into account prognosis (including likely future quality of life). A competent patient may decline such treatment. For an incompetent patient, both carers and those closest to the patient may agree after full consultation that it is inappropriate.
12 When tube feeding is continued after leaving hospital there is a duty to ensure that the patient, daily carers and the community health team are adequately instructed in the technique and possible complications.