A good friend of mine, aged 82, whose life had been characterised by humour, independence and good health, suffered a severe stroke. He had few relatives and lived alone. When admitted to hospital he was stuporose and paralysed on one side. During the next six weeks, until he died, there was no sign of recovery and he lay with little or no recognition of visitors, unable to move in bed or to swallow. A tube was passed through his nose for fluid administration but he twitched his head, to express discomfort or disapproval, and repeatedly tried to remove it with his unaffected hand. An intravenous glucose-saline infusion was therefore substituted and until his death he became visibly and progressively undernourished. The IV infusion appeared to prolong the period of dying, but without clinical benefit.
Should it have been started and should it have been continued? Was it continued so carers could avoid a difficult ethical decision? Should they have over-ruled my friend's resistance to the nasogastric tube feed and restrained his hand? What else could have been done?
These are everyday questions of clinical practice but illustrate problems of patient autonomy and consent, withholding or withdrawing treatment, and the compassionate care of the dying. Many Christians are troubled about ethical problems like these and the following comments are made as much to provoke discussion as to offer guidance.
Attention to drinking and eating as an aspect of basic care
Those who care for babies, the handicapped, the sick, or the old have a duty of care to provide appropriate fluids and nourish-ment, and to assist with drinking and eating as needed, as long as the person in their care is willing and able to drink (or suck) and swallow safely. This ethical imperative is the fall-back position whenever ethical decisions arise concerning fluid infusion.
A distinction has to be drawn between simple solutions of salts and glucose, and nutritious fluids containing all the nutrients essential for life. Glucose-saline solutions can be given parenterally as a temporary measure to prevent fluid depletion. As the sole treatment over weeks their use is associated with progressive undernutrition and eventually death.
Nutritious fluids containing balanced proportions of fat, carbohydrate, protein, vitamins and trace elements can be introduced into the stomach or intestine provided that intestinal absorption is possible. Infusion of nutrients may be via the gullet or through the abdominal wall. A tube can be introduced through the abdominal wall at surgery or without open operation (percutaneous gastrostomy) using an endoscopic or radiological technique. Use of such a technique is now commonplace and generally successful, though it is sometimes complicated. A gastrostomy tube is out of sight and rapid infusion of a relative-ly large volume at a time is possible so that an optimal nutritional intake is easier to maintain than with a nasogastric tube.
Intravenous feeding requires considerable clinical skill and organisation. Since it is liable to major complications, particu-larly blood-borne infection, and is expensive, it is reserved for patients with intestinal failure.
Is there a legal and ethical distinction between basic nutritional care and tube feeding?
Legal judgments in the Tony Bland case and similar cases in this and other countries have regarded tube feeding for adults as a medical treatment. This is a crucial judgment because, if accepted, it means that like any other medical intervention a tube feed should form part of a treatment plan with a defined goal. It can be argued conversely that a nasogastric tube is simply a special utensil used for feeding and that tube feeding is therefore part of basic care. However, in view of its invasive nature, most health carers accept the legal judgment, except perhaps for infants who cannot suck when use of a tube may be regarded as part of basic care.
Possible goals of fluid infusion
The goal of giving a glucose-saline infusion may be to prevent or relieve thirst, or prevent fluid depletion with loss of circula-tory fluid volume and failure of urinary excretion. The aim of giving fluid and nutrients is most commonly to maintain or restore nutrition when a person cannot drink or eat enough to do so unaided. A goal in neurological disorders may be to prevent malnutrition as an additional factor contributing to the muscle weakness caused by the disease. For patients with cerebral disorders who cannot swallow, the object may be to maintain nutrition for sufficient time to allow some or complete neurological recovery.
Consultation, communication, consent and competence
Healthcare in this country is now usually given by a team, each member contributing a different skill. Christian practice should be marked by communication and consultation within the team so that, as far as possible, all agree on a treatment plan, espe-cially if difficult ethical decisions are needed.
English law is explicit on the right of an adult to refuse any type of treatment, even though to others the decision is not apparently in his or her best interest. The ability to make such decisions is described as 'competence' which needs to be judged against the actual decision to be made, in this case the infusion of fluid into the body through a needle or tube. It may be difficult to assess whether a patient after a severe stroke understands what is said. Furthermore, patients with cerebral damage may have difficulty communicating their wishes. Despite these difficulties, a joint publication by the British Medical Association and the Law Society regards underestimation of competence as unethical and warns against it, provided that mental illness is not the reason for an apparently irrational decision.
Where a patient is unconscious, or in a vegetative state, or mentally confused, and is unable to make a decision the doctor should enquire as to whether, when competent earlier in life, s/he may have expressed wishes in writing or orally about the treatment s/he would wish to receive or refuse in these circum-stances. At present such an instruction, especially if written, has ethical and some legal force. The Government has issued a consultation document on the whole matter of making decisions on behalf of incompetent patients and is likely to introduce proposals for legislation concerning advance refusals of treatment. It is suggested that a person should never be able to refuse basic care, including direct oral nutrition and hydration. There is controversy as to whether advance refusals should be allowed to forbid the use of hydration or feeding by tube. The major argument against such refusal is that it is impossible for anyone to envisage under what circumstances their advance directive may be applicable. In the situation that actually occurs it may be clinically appropriate to give liquid, with or without nutrients, by tube.
At present, the decision as to whether an infusion of fluid should be given, withheld, or withdrawn from an incompetent patient rests with the doctor in charge who needs to find out if s/he has previously expressed an opinion and who decides in his or her 'best interest'. If involved, a Court does not direct what should, or should not, be done; it forms a declaratory judgment about the legality of any action the doctor proposes to take. Clearly, good practice demands early, repeated and sensitive consultation with the family or others closest to the patient. As the law now stands a relative cannot make a decision on behalf of a patient but can give an opinion as to what the patient would have wished. Future proposed legislation may enable a competent patient to appoint a proxy, as is done in America, to make decisions on their behalf regarding health care if s/he becomes incompetent later.
When is a fluid infusion beneficial?
Hydration or nutrition by tube should be considered when adequate hydration or nutrition cannot be achieved by normal drinking and eating, and the procedure is clinically appropriate. Regrettably, the use of a fluid infusion is sometimes not considered because the need for it is not recognised.
When may a tube feed be withheld or withdrawn?
First, and obviously, if the goal of treatment is achieved and the patient can now drink and eat enough to maintain health an infusion is stopped.
b. Care of the dying
Compassionate care of the dying is an essential part of care for the sick in which Christians have taken a lead. If a disorder is progressive, and no treatment is available to halt its progress, there comes a stage at which death in the near future appears inevitable. At this stage the goal of treatment is to provide comfort, relief of symptoms and loving support. People who are dying often lose the desire to drink or eat quantities normal in health. The situation is not that the person does not drink and therefore will die, rather that the person is dying and does not wish to drink. Many publications suggest that the dying do not often suffer from thirst and that a dry mouth can be relieved by local measures. Infusion of fluid by tube is intrusive unless thirst is truly a symptom and cannot be relieved by sips of fluid and mouth care.
The hospice movement has led the world in the care of terminal illness, particularly cancer and some progressive neurological conditions. It now seems appropriate to extend these principles of care to other common modes of death, for example severe stroke or dementia. There is public concern at present regarding the use or non-use of hydration by tube when patients are apparently unaware of symptoms, including thirst, when they need heavy sedation or analgesia to relieve pain or other unpleasant symptoms at the extreme end of life.
The guiding principles are to avoid distress to the patient and prevent concern among relatives if they feel that hydration is needed. If needed for either reason, the simplest and least distressing method of fluid administration should be used. For example, rectal infusion may have a role.
During the terminal phase of dementia sufferers may resist all attempts to assist them with drinking and eating. This causes great distress to carers and relatives. Provided that the failure to eat or drink is not due to a complication such as infection, carers and the family may decide, after much discussion and with great regret, that the sufferer should take as much or as little as he or she wishes because this behaviour usually indicates a terminal phase of the illness.
c. Failure of the therapeutic goal
If at the end of a trial period of infusion it is evident that the goal originally set has not been achieved, a decision is needed to continue, to stop or to change the treatment. In the widely publicised condition of persistent vegetative state the goal of a tube feed may be to allow time for possible cerebral recovery, or to prolong physical life for as long as possible. Minimal self-awareness or communication is very difficult to detect, especially if sight is lost, and requires skilled observation, preferably in a special unit, to avoid misdiagnosis of a 'locked-in' state in which mental function cannot express itself due to paralysis. Observation has shown that if there is not return of any self-awareness or communication within 6 months of an anoxic episode and 12 months of traumatic head injury, recovery is unlikely.
There may come a time when the healthcare team and the relatives all agree in believing that the tube feed has failed in the objective of giving time for cerebral recovery. A clinical decision to withdraw the feed because it is 'futile' may be recommended, though the consent of a Court is necessary. Such withdrawal does not mean abandonment of care. For example, the nurses looking after Tony Bland redoubled their solicitude until death occurred peacefully after about 10 days, not as popularly believed from starvation, but from the metabolic and circulatory consequences of fluid depletion. Death was due to the original cerebral anoxia; though it had been postponed by medical and nursing care.
Withholding a particular type of tube feed may be appropriate because it would be an excessive burden. For example, after a totally disabling stroke from which there is no evidence of recovery a percutaneous gastrostomy might prolong life, but the published evidence is that survival is often short, at a cost to the patient of a further period of prolonged immobility, dysphagia and impaired mental faculties. The social circumstances, especially the burden on an elderly spouse, have also to be taken into account, though the patient's welfare is paramount.
When can a tube feed be imposed on an unwilling person?
Patients admitted to hospital involuntarily under the provisions of the Mental Health Act 1983 can be given treatment for the mental illness without their consent but in their 'best interest'. Anorexia nervosa is a defined mental illness and a legal judgment has ruled that a tube feed can be regarded as part of the treatment for this condition. This situation would only arise if the patient's under-nourishment was so severe that it became a danger to life, thus justifying enforced treatment. Every effort would clearly be made to persuade the sufferer to accept a treatment regime voluntarily, and this might include a tube feed.
Christians believe that the soul is eternal but the body is temporal and mortal. The soul is inextricably linked with memory, purpose, moral qualities, personal relationships and spirituality, even if these attributes are present in the slightest degree. Christians thus seek to protect human life defined in these terms. Christians also have a distinctive view of death and dying. Death is a portal to eternity, not extinction. Our duty as health carers is lovingly to help our patients through birth, life and death, but not to prolong their dying. It is not incumbent upon us to postpone death indefinitely when mental faculties have irrecoverably ceased due to cerebral damage or disease, and remaining life consists only of autonomically controlled systems.
There is no universal answer to these ethical problems; each has to be faced as it arises in the care of one person. Am I neglect-ing my patient's need for fluid or nutritional treatment? Am I prolonging death rather than promoting life? What are my motives in giving an apparently burdensome or futile treatment? It may take moral conviction and courage for a com-passionate carer to give or continue an infusion, or conversely to withhold or withdraw it.