- Email: [email protected]
Basics in clinical nutrition: Ethical and legal aspects
e-SPEN, the European e-Journal of Clinical Nutrition and Metabolism (2008) 3, e298ee302
e-SPEN, the European e-Journal of Clinical Nutrition and Metabolism http://intl.elsevierhealth.com/journals/espen
EDUCATIONAL PAPER
Basics in clinical nutrition: Ethical and legal aspects S.P. Allison University Hospital, Nottingham, United Kingdom Received 1 July 2008; accepted 1 July 2008
KEYWORDS Beneficence; Non maleficence; Autonomy; Motor neurone disease
Learning objectives e To understand the principle of medical ethics e To appreciate how these affect the practice of nutritional care e To appreciate some legal aspects of this practice.
Introduction Ethical codes of caring professions include not only minimal standards of behaviour but also ideals, and have been described as the ‘‘collective conscience of our profession’’. The law, on the other hand, defends individual rights and liberties and sets minimum standards below which conduct can be regarded as lacking in care, negligent or downright criminal. It also protects those who are unable or incompetent to make decisions for them. Medical ethics are based on the following four principles: I. Beneficence e do good II. Non-maleficence e do no harm III. Autonomy e the patient’s right to self-determination IV. Justice e equal access to all.
E-mail address: [email protected] (Editorial Office).
Beneficence and non-maleficence The first two form part of our Hippocratic Oath, but Hippocrates had no time for autonomy, preferring the role of the paternalistic physician who makes all the decisions for his patient, based on ‘‘philanthropia’’, i.e. doing well, in order to preserve his reputation. He wrote: ‘‘Perform these duties calmly and adroitly, concealing most things from the patient while you are attending to him. Give necessary orders with cheerfulness and sincerity, turning his attention away from what is being done to him . revealing nothing of the patient’s future or present condition.’’ e a far cry from informed consent! Four hundred years later, in the first century AD, Scribonius Largus, physician to the Emperor Claudius, encouraged physicians to base decisions on humanitas, that is the love of mankind, and on misericordia, or mercy. The ethical problems we face today, however, are infinitely more complex and difficult than those faced by our ancestors. A physician or surgeon in ancient times had few drugs, a few rudimentary surgical techniques, and often had little choice but to trust to nature. Hippocrates himself wrote: ‘‘In most diseases, there is a tendency to natural cure and, if the patient’s constitution is supported by simple means (food and fluids), recovery will follow’’. It was perhaps because of this therapeutic poverty that diet
1751-4991/$ - see front matter ª 2008 European Society for Clinical Nutrition and Metabolism. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.eclnm.2008.07.004
Ethical and legal aspects and nutritional support were recognized as having great therapeutic importance. Again Hippocrates wrote: ‘‘Wherefore, I say, that such constitutions as suffer quickly and strongly from errors in diet, are weaker than others who do not; and that a weak person is in a state very nearly approaching to one in disease. Whoever pays no attention to these things or, paying attention, does not comprehend them, how can he understand the diseases which befall a man? For, by every one of these things, a man is affected and changed this way or that, and the whole of his life is subjected to them, whether in health, convalescence or disease. Nothing else can be more important or necessary to know than these things.’’ and again, he wrote: ‘‘In all maladies, those who are well nourished do best. It is bad to be very thin and wasted’’. He also prescribed, for acute illness: ‘‘A diet of barley gruel with honey and water to drink’’. In 1793, John Hunter, the father of British surgery, describing a case of paralysis of the muscles of swallowing, wrote: ‘‘It becomes our duty to adopt some artificial mode of conveying food into the stomach by which the patient may be kept alive while the disease continues’’. For 1500 years after Galen, the standard treatment for fever was bleeding, starving and purging. With extraordinary insight, Robert Graves, a Dublin physician, best known for his description of thyrotoxicosis, realized that this treatment might actually be harmful and be responsible for the high mortality from typhus fever. In an outbreak of typhus in Dublin in 1842, he abandoned conventional practice and instead gave his patients food and drink. When asked the reason for the consequent fall in mortality, he said: ‘‘You are not to permit your patient to encounter the terrible consequences of starvation because he does not ask for nutriment: Gentlemen, these results are due to good feeding. When I am gone, you may be at a loss for an epitaph for me. I give it to you in these words: He fed fevers’’. Florence Nightingale, following her experiences in the Crimea, wrote in her Notes on Nursing in 1859: ‘‘Every careful observer of the sick will agree in this, that thousands of patients are annually starved in the midst of plenty from want of attention to the ways which alone make it possible for them to take food. . I would say to the nurse, have a rule of thought about your patient’s diet; consider, remember how much he has had and how much he ought to have today’’. The thread running through all these pronouncements is the notion of our duty and obligation to do no harm to our patients either actively or by passive neglect and to do good by providing nutrition and fluids. Today we have a wealth of techniques at our disposal for delivering adequate nutrition orally, enterally and parenterally. We also have sophisticated and expensive life support systems. Despite this there remains in most health care systems a gap between knowledge and practice which carries clinical and economic consequences. It may also, however, have ethical and legal implications. The more evidence that accumulates that malnutrition impairs outcome and nutritional care can improve it, the more it becomes apparent that failure ‘‘to consider these things’’, as Hippocrates put it, is not only a failure of our duty to do good and avoid doing harm, but may well be construed as negligence and lay us open to action in the courts. Here we need to separate the concept of basic care from nutrition by artificial means. Basic care has been
e299 defined legally as a right and consists in the provision of adequate fluid and nutrients by mouth for all our patients, as well as help where necessary with drinking and eating. This professional duty continues as long as a patient can swallow and there is no medical contraindication to taking fluid and food by mouth. On the other hand, the highest legal authorities have defined parenteral and enteral feeding by tube as medical treatment, not basic care, although some paediatricians have argued that, in the case of the neonate, tube feeding should be regarded as basic care. Our demonstrable failure to provide adequate basic care with food and drink in many cases e and studies have demonstrated this e falls short of our legal obligations as well as professional standards. In some cases also the failure to provide artificial nutrition in a situation where there is clear evidence of potential benefit could also be construed as negligent and legally culpable. In contrast, where there is evidence of potential harm or obvious futility, the physician is on safe ground both ethically and legally in not introducing or even withdrawing treatment. A legal judgement, quoted in the Journal of Medical Ethics, expressed it thus: ‘‘Medical science and technology has advanced for a fundamental purpose: the purpose of benefiting the life and health of those who turn to medicine to be healed. It surely was never intended that it be used to prolong biological life in patients bereft of the prospect of returning to an even limited exercise of human life.’’ Here the legal, ethical and religious views converge. The Roman Catholic and Orthodox Jewish views, which are commonly and erroneously supposed to favour preservation of life at all costs, are clear. The Roman Catholic position is that there should be a presumption in favour of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration provided that it is of sufficient benefit to outweigh the burdens involved to the patient. Father Paris, a Jesuit priest and a professor of medical ethics has argued that preventing doctors withdrawing future treatment is unethical since it would discourage trials of treatment where benefit is initially in doubt. This view allows the concept of planned and limited trials of treatment, undertaken after full discussion with all concerned; with agreed goals and grounds for withdrawal should the treatment be ineffective. The legal view is that withholding and withdrawing treatment are the same, and that decisions concerning these must be based on consideration of patient benefit, not on what is convenient or expedient. Orthodox Jewish thinkers regard the dying person in a special light, and argue against ‘‘impediments to dying in the final year of life’’. There are, however, differences between religious and legal views concerning, for example, the notion of brainstem death. When religious principle conflicts with medical opinion, however, legal judgements have ruled that personal opinion cannot override published policy, that a doctor cannot be compelled to treat against the dictates of professional conscience, especially when he or she acts according to a widely held professional view (Bolam principle).
Autonomy Autonomy was embodied in the Nuremberg Code following the Second World War for well-known reasons. The notion
e300 that patients needed protection from unethical experimentation or evil intent by the physician would have been abhorrent to our ancestors. Nonetheless, the concept of autonomy or self-determination was further confirmed in the Helsinki Declaration and International Covenant on Civil and Political Rights. The competent patient, therefore, has the legal right to refuse treatment. In the UK the British Medial Association and the Law Society have published clear guidelines on the assessment of mental capacity. A person should be able to e understand in simple language what the medical treatment (or research intervention) is, its purpose and nature and why it is proposed e understand its principal benefits, risks and alternatives e understand in broad terms what will be the consequences of not receiving the proposed treatment e retain the information for long enough to make an effective decision e make a free choice (without pressure). The process of communicating these may sometimes be difficult, but doctors should not be tempted to underestimate the patient’s capacity to make a decision. Every attempt should be made to help this process. The position of the incompetent adult is more difficult. Advance directives or living wills should be respected and will increasingly have the force of law in western countries. I always ask relatives whether the patient has ever expressed a view verbally. The views of the family must be respected, although in the UK this does not have the force of law. We always approach them saying that ‘‘if this were myself or a member of my own family, what would I want done?’’. Conversely, doctors are not obliged to submit to pressure to give futile treatment. Most importantly, decisions should be shared by all the members of the team and other colleagues asked for advice where appropriate. Using these principles, I cannot recall an occasion when conflict arose. We are all influenced by our own personal experiences. I recall a patient that was dying from heart disease but with unimpaired cognitive function. They stopped eating and drinking and when they were pressed to eat, they said, ‘‘don’t be so unkind’’. With the best intentions, therefore we may try to do well, but unless it accords with the patient’s wishes, we may be behaving unethically. There are specific instances, however, where force is legal and even ethical. In some countries force feeding of prisoners is legal, in others not. Patients at risk from dying from malnutrition due to anorexia nervosa fall within the meaning of the UK Mental Health Act and may be force-fed. Interestingly, the mass child murderer, Brady, who recently went on hunger strike in the UK, was force-fed on the order of the High Court, not on the basis that he was a prisoner, but on the grounds of mental illness.
Special situations Some of the most difficult decisions in nutritional support concern malignant and neurological disease.
S.P. Allison
Malignant disease We would none of us have any difficulty, I think, in providing nutritional support for cancer patients to aid cure or significant remission. Similarly, in some cases of terminal cancer obstructing the upper GI tract, enteral feeding may have a useful palliative and supportive role. One of our patients aged 45 with an obstructing and inoperable carcinoma of the stomach was enabled, with the use of a feeding jejunostomy, to remain reasonably well, return to work for two months, and be with his family for four months, at the end of which he died rapidly and peacefully. In contrast, a recent Italian study showed that TPN in terminal cancer patients offered little benefit and exposed patients to additional burden. In the interest, therefore, of beneficence and non-maleficence as well as justice, TPN in most cases of terminal cancer is unjustified.
Motor neurone disease (MND) In this condition, muscles are paralysed but cognition remains. In a two year follow up of all newly diagnosed cases of MND, we found that only 25% benefited from percutaneous endoscopic gastrostomy (PEG feeding) and these were mainly patients with predominantly bulbar features and late loss of limb function. Two patients who did not benefit, clearly submitted to pressure from their families to consent to treatment, which has made us very careful in our selection of patients for treatment, and strengthened us in our resistance to providing it when we know is will give no benefit.
Dementia A recent review by Gillick has reminded us that eating and drinking are the last functions to be lost in this fatal condition and that the loss of these functions heralds death. The capacity to experience hunger and thirst is lost. Several studies have also shown no benefit in terms of survival, quality of life, reflux or pneumonia from artificial nutritional support in advanced dementia. Indeed, an added burden is imposed by the complications of treatment. Compassionate care with sips of fluid and mouth toilet should mark the limit of our intervention.
Stroke The boundaries have yet to be defined, but there is a worrying tendency to use PEGs for convenience of management rather than true need and benefit. We need to define more clearly the indications for artificial feeding in stroke. In any case, treatment should be conducted in the context of a unit expert in the management of this condition.
Persistent vegetative state The Cuzan case in the United States and the Tony Bland case in the UK gave rise to much publicity and debate but were helpful in defining, for doctors, the law in respect of withholding or withdrawing treatment in this fortunately uncommon state, in which all features of personhood are
Ethical and legal aspects lost although brainstem function persists. This is perhaps the one condition which should be referred to the courts for a ruling. Because of the difficulties of early diagnosis, courts will not entertain an application for permission to withdraw treatment within 12 months of onset of the condition. Secondly, courts will only pronounce on the legality of withdrawing treatment, effectively saying to the doctors that it would not be against the law to withdraw treatment if this is in the best interests of the patient, leaving them to decide the issues of benefit and burden.
Justice The growth in demand for health care and the escalation of treatment technology faces all societies with the problem of satisfying infinite demand with finite resources. This increasingly presents doctors with conflicts between beneficence and justice. An expensive but marginally effective treatment provided to one patient may reduce the resources in money, staff and equipment available to treat another patient who might benefit more. Whether we like it or not, therefore, physicians, while having a primary duty to the patient, have a duty to husband resources and use them effectively. It is preferable that such matters be influenced by us than by insurance companies or politicians, but we must think carefully about this issue. In her Presidential Address to ASPEN, Virginia Hermann quotes an article in the Wall Street Journal by a non-medical director of a health care data-analysis and research firm, who wrote: ‘‘A healthy patient is a unit of production, and for all the units of production, there is an optimal production function which can be calculated.’’ Two years ago I received a letter from an administrator, suggesting that my practice should be in accord with the business plan of the Hospital Trust. Such depersonalisation should make us shudder and reminds one of the subordination of doctors and other professionals to serve malignant political systems. There is a fine line to be drawn here and we should be wary of allowing ourselves to drift across it at the behest of politicians and businessmen whose agenda is different to our own. Overtly or not, each society has some form of health rationing. In the United States it is by ability to pay. The system in the UK National Health Service pretends that all patients are covered equally for optimal care, while rationing is applied by growing waiting lists. A more honest attempt at providing health care equitably was made by the State of Oregon. They first decided the question, which should be covered by Medicare and Medicaid funding from taxes and voted that all should be covered. They then addressed the question: ‘‘What should be covered?’’ and appointed expert committees to gather the latest and best evidence on health technologies and their cost. Then by wide consultation in society, with town hall meetings and input from all groups in society, health priorities were ranked in a way which reflected the public will. Lastly the legislatures were asked to vote a budget which effectively drew a line in the list of priorities below which the remaining technologies would not be funded. The legislature was not allowed to alter the order of priorities which the public had decided. The priority list and the budget were then subject to monitoring and annual review, so that anomalies could be corrected. This process
e301 gave rise to some very emotive conflicts, for example, a young boy with leukaemia was denied funding for a bone marrow transplant. The same sum of money provided antenatal care for 1500 poor mothers. These considerations make it all the more important that our PEN societies should support research and clinical trials to enlarge the evidence for our own technology. We should be very clear about who benefits and who does not. We should define what harm may be done, e.g. high complication rates in parenteral nutrition conducted by inexpert staff, or the worse outcome shown in the Veterans Administration trial, when perioperative TPN is given to those without prior malnutrition. In our own unit, we have kept careful records since 1983 and were able to conduct an audit of patients who received TPN for acute gastrointestinal failure for an average of 50 days. We argued that survival for this length of time without feeding would have been very unlikely without TPN, which can be regarded as the treatment of acute gastrointestinal failure. Seventyfive percent of patients with benign disease were alive 10 years later. Although, therefore, an average 50 days of TPN was costly, the resulting survival and cost per year of life saved of £ 4700, justified the treatment as comparable in effectiveness and cost to other well-accepted technologies. Similar data in terms of longevity and life quality has been produced, justifying the selective use of longterm home parenteral nutrition. ‘‘Considering these things’’, I have drawn up a list summarising some of the main ethical and legal aspects of nutritional support. Poets have the ability to distil truth into a few telling words. The poet James Kirkup, after witnessing my father carry out a mitral valvotomy in 1951, wrote a poem ‘‘A correct compassion’’ which is published in the Oxford Book of Twentieth Century Verse. In the last verse, he wrote: ‘‘For this is imaginations other place Where only necessary things are done, with the supreme and grave Dexterity that ignores technique, with proper grace Informing a correct compassion that performs it love and makes it live.’’ James Kirkup, 1951
Summary Ethical and legal considerations increasingly influence clinical decisions. e Increased complexity of decisions in our technical and medico-legal climate in which the patient is better informed. e The physician’s first duty is to the patient (beneficence, non-maleficence) but he or she also has a duty to society (Justice). e It is the responsibility of society as a whole to decide what resources are to be devoted to health care after full and public discussion and consultation. e The patient’s autonomy must be respected but no physician can be forced to undertake treatment that is futile or that he or she considers against the patient’s interest.
e302 e The interest of the individual must however be protected against arbitrary action or decisions by government, purchasing bodies, insurance companies or individuals by a Bill of Rights which is safeguarded by the courts acting independently of government. e Care of the sick entails the basic duty of providing adequate and appropriate fluid and nutrients by mouth. e As long as a patient can swallow and expresses a desire or willingness to drink or eat, fluid and nutrients should be given provided that there is no medical contraindication. This is basic care. Artificial feeding by tube or by vein is a medical treatment. e A treatment plan for any patient should include provision for fluid and nutrition. Health carers should work as a team. e If the plan is to maintain an adequate intake the ethical duty is to provide this, with the patient’s consent, orally or by artificial means. e If the illness is terminal, religious, ethical and legal authorities consider that compassionate care should include only measures to ensure comfort. Prolongation of misery or dying by burdensome technology is unethical. e Fluid or food given by tube enterally or parenterally is legally medical treatment and not basic care. e For an incompetent adult, the doctor is responsible in law for doing what is in the patient’s best interests. He should seek to ascertain the previously expressed views of the patient, consulting the other members of the team and family. The legal position of living wills and the family varies between countries. e Special considerations apply regarding the responsibility of parents to make a decision on behalf of their child and consent for the treatment by adolescents. e Application to the court should be made regarding the legality of withdrawing artificial hydration and nutrition from a patient in a vegetative state. e Under carefully specified circumstances, it can be legal to enforce nutritional treatment on an unwilling patient, e.g. anorexia nervosa or hunger strikers.
S.P. Allison e It could be construed as unethical not to be able to conduct a time-limited trial of treatment for fear of being unable to withdraw it if it proves of no benefit. e 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.
Conflict of interest There is no conflict of interest.
Further reading 1. Allison SP. The uses and limitations of nutritional support. Clin Nutr 1992;11:319. 2. Lennard-Jones JE. BAPEN report. Ethical and legal aspects of clinical hydration and nutritional support;, ISBN 1 899467 25 4; 1988. Available from BAPEN, PO Box 922, Maidenhead, Berks, SL6 4SH. 3. Dixon J, Welch HG. Priority setting: lessons from Oregon. Lancet 1991;337:891. 4. Gillick M. Rethinking the role of tube feeding in patients with advanced dementia. NEJM 2000;342:206. 5. Herrmann VM. Nutrition support: ethical or expedient and who will choose? Presidential Address to ASPEN. JPEN 1999;23:195. 6. Kitzhaber JA. Prioritising health services in an era of limits: the Oregon experience. Lancet 1993;307:373. 7. Macfie J. Ethical and legal considerations in the provision of nutritional support to the perioperative patient. Curr Opin Clin Nutr Metab Care 2000;3:23. 8. Messing B, Landais P, Goldfarb B, Irving M. Home parenteral nutrition in adults: a multicentre survey in Europe. Clin Nutr 1989;8:3. 9. O’Hanrahan T, Irving MH. The role of home parenteral nutrition in the management of intestinal failure e report of 400 cases. Clin Nutr 1992;11:331. 10. Shields PL, Field J, Rawlings J, Kendall J, Allison SP. Long-term outcome and cost-effectiveness of parenteral nutrition for acute gastrointestinal failure. Clin Nutr 1996;15:64.
e-SPEN, the European e-Journal of Clinical Nutrition and Metabolism http://intl.elsevierhealth.com/journals/espen
EDUCATIONAL PAPER
Basics in clinical nutrition: Ethical and legal aspects S.P. Allison University Hospital, Nottingham, United Kingdom Received 1 July 2008; accepted 1 July 2008
KEYWORDS Beneficence; Non maleficence; Autonomy; Motor neurone disease
Learning objectives e To understand the principle of medical ethics e To appreciate how these affect the practice of nutritional care e To appreciate some legal aspects of this practice.
Introduction Ethical codes of caring professions include not only minimal standards of behaviour but also ideals, and have been described as the ‘‘collective conscience of our profession’’. The law, on the other hand, defends individual rights and liberties and sets minimum standards below which conduct can be regarded as lacking in care, negligent or downright criminal. It also protects those who are unable or incompetent to make decisions for them. Medical ethics are based on the following four principles: I. Beneficence e do good II. Non-maleficence e do no harm III. Autonomy e the patient’s right to self-determination IV. Justice e equal access to all.
E-mail address: [email protected] (Editorial Office).
Beneficence and non-maleficence The first two form part of our Hippocratic Oath, but Hippocrates had no time for autonomy, preferring the role of the paternalistic physician who makes all the decisions for his patient, based on ‘‘philanthropia’’, i.e. doing well, in order to preserve his reputation. He wrote: ‘‘Perform these duties calmly and adroitly, concealing most things from the patient while you are attending to him. Give necessary orders with cheerfulness and sincerity, turning his attention away from what is being done to him . revealing nothing of the patient’s future or present condition.’’ e a far cry from informed consent! Four hundred years later, in the first century AD, Scribonius Largus, physician to the Emperor Claudius, encouraged physicians to base decisions on humanitas, that is the love of mankind, and on misericordia, or mercy. The ethical problems we face today, however, are infinitely more complex and difficult than those faced by our ancestors. A physician or surgeon in ancient times had few drugs, a few rudimentary surgical techniques, and often had little choice but to trust to nature. Hippocrates himself wrote: ‘‘In most diseases, there is a tendency to natural cure and, if the patient’s constitution is supported by simple means (food and fluids), recovery will follow’’. It was perhaps because of this therapeutic poverty that diet
1751-4991/$ - see front matter ª 2008 European Society for Clinical Nutrition and Metabolism. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.eclnm.2008.07.004
Ethical and legal aspects and nutritional support were recognized as having great therapeutic importance. Again Hippocrates wrote: ‘‘Wherefore, I say, that such constitutions as suffer quickly and strongly from errors in diet, are weaker than others who do not; and that a weak person is in a state very nearly approaching to one in disease. Whoever pays no attention to these things or, paying attention, does not comprehend them, how can he understand the diseases which befall a man? For, by every one of these things, a man is affected and changed this way or that, and the whole of his life is subjected to them, whether in health, convalescence or disease. Nothing else can be more important or necessary to know than these things.’’ and again, he wrote: ‘‘In all maladies, those who are well nourished do best. It is bad to be very thin and wasted’’. He also prescribed, for acute illness: ‘‘A diet of barley gruel with honey and water to drink’’. In 1793, John Hunter, the father of British surgery, describing a case of paralysis of the muscles of swallowing, wrote: ‘‘It becomes our duty to adopt some artificial mode of conveying food into the stomach by which the patient may be kept alive while the disease continues’’. For 1500 years after Galen, the standard treatment for fever was bleeding, starving and purging. With extraordinary insight, Robert Graves, a Dublin physician, best known for his description of thyrotoxicosis, realized that this treatment might actually be harmful and be responsible for the high mortality from typhus fever. In an outbreak of typhus in Dublin in 1842, he abandoned conventional practice and instead gave his patients food and drink. When asked the reason for the consequent fall in mortality, he said: ‘‘You are not to permit your patient to encounter the terrible consequences of starvation because he does not ask for nutriment: Gentlemen, these results are due to good feeding. When I am gone, you may be at a loss for an epitaph for me. I give it to you in these words: He fed fevers’’. Florence Nightingale, following her experiences in the Crimea, wrote in her Notes on Nursing in 1859: ‘‘Every careful observer of the sick will agree in this, that thousands of patients are annually starved in the midst of plenty from want of attention to the ways which alone make it possible for them to take food. . I would say to the nurse, have a rule of thought about your patient’s diet; consider, remember how much he has had and how much he ought to have today’’. The thread running through all these pronouncements is the notion of our duty and obligation to do no harm to our patients either actively or by passive neglect and to do good by providing nutrition and fluids. Today we have a wealth of techniques at our disposal for delivering adequate nutrition orally, enterally and parenterally. We also have sophisticated and expensive life support systems. Despite this there remains in most health care systems a gap between knowledge and practice which carries clinical and economic consequences. It may also, however, have ethical and legal implications. The more evidence that accumulates that malnutrition impairs outcome and nutritional care can improve it, the more it becomes apparent that failure ‘‘to consider these things’’, as Hippocrates put it, is not only a failure of our duty to do good and avoid doing harm, but may well be construed as negligence and lay us open to action in the courts. Here we need to separate the concept of basic care from nutrition by artificial means. Basic care has been
e299 defined legally as a right and consists in the provision of adequate fluid and nutrients by mouth for all our patients, as well as help where necessary with drinking and eating. This professional duty continues as long as a patient can swallow and there is no medical contraindication to taking fluid and food by mouth. On the other hand, the highest legal authorities have defined parenteral and enteral feeding by tube as medical treatment, not basic care, although some paediatricians have argued that, in the case of the neonate, tube feeding should be regarded as basic care. Our demonstrable failure to provide adequate basic care with food and drink in many cases e and studies have demonstrated this e falls short of our legal obligations as well as professional standards. In some cases also the failure to provide artificial nutrition in a situation where there is clear evidence of potential benefit could also be construed as negligent and legally culpable. In contrast, where there is evidence of potential harm or obvious futility, the physician is on safe ground both ethically and legally in not introducing or even withdrawing treatment. A legal judgement, quoted in the Journal of Medical Ethics, expressed it thus: ‘‘Medical science and technology has advanced for a fundamental purpose: the purpose of benefiting the life and health of those who turn to medicine to be healed. It surely was never intended that it be used to prolong biological life in patients bereft of the prospect of returning to an even limited exercise of human life.’’ Here the legal, ethical and religious views converge. The Roman Catholic and Orthodox Jewish views, which are commonly and erroneously supposed to favour preservation of life at all costs, are clear. The Roman Catholic position is that there should be a presumption in favour of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration provided that it is of sufficient benefit to outweigh the burdens involved to the patient. Father Paris, a Jesuit priest and a professor of medical ethics has argued that preventing doctors withdrawing future treatment is unethical since it would discourage trials of treatment where benefit is initially in doubt. This view allows the concept of planned and limited trials of treatment, undertaken after full discussion with all concerned; with agreed goals and grounds for withdrawal should the treatment be ineffective. The legal view is that withholding and withdrawing treatment are the same, and that decisions concerning these must be based on consideration of patient benefit, not on what is convenient or expedient. Orthodox Jewish thinkers regard the dying person in a special light, and argue against ‘‘impediments to dying in the final year of life’’. There are, however, differences between religious and legal views concerning, for example, the notion of brainstem death. When religious principle conflicts with medical opinion, however, legal judgements have ruled that personal opinion cannot override published policy, that a doctor cannot be compelled to treat against the dictates of professional conscience, especially when he or she acts according to a widely held professional view (Bolam principle).
Autonomy Autonomy was embodied in the Nuremberg Code following the Second World War for well-known reasons. The notion
e300 that patients needed protection from unethical experimentation or evil intent by the physician would have been abhorrent to our ancestors. Nonetheless, the concept of autonomy or self-determination was further confirmed in the Helsinki Declaration and International Covenant on Civil and Political Rights. The competent patient, therefore, has the legal right to refuse treatment. In the UK the British Medial Association and the Law Society have published clear guidelines on the assessment of mental capacity. A person should be able to e understand in simple language what the medical treatment (or research intervention) is, its purpose and nature and why it is proposed e understand its principal benefits, risks and alternatives e understand in broad terms what will be the consequences of not receiving the proposed treatment e retain the information for long enough to make an effective decision e make a free choice (without pressure). The process of communicating these may sometimes be difficult, but doctors should not be tempted to underestimate the patient’s capacity to make a decision. Every attempt should be made to help this process. The position of the incompetent adult is more difficult. Advance directives or living wills should be respected and will increasingly have the force of law in western countries. I always ask relatives whether the patient has ever expressed a view verbally. The views of the family must be respected, although in the UK this does not have the force of law. We always approach them saying that ‘‘if this were myself or a member of my own family, what would I want done?’’. Conversely, doctors are not obliged to submit to pressure to give futile treatment. Most importantly, decisions should be shared by all the members of the team and other colleagues asked for advice where appropriate. Using these principles, I cannot recall an occasion when conflict arose. We are all influenced by our own personal experiences. I recall a patient that was dying from heart disease but with unimpaired cognitive function. They stopped eating and drinking and when they were pressed to eat, they said, ‘‘don’t be so unkind’’. With the best intentions, therefore we may try to do well, but unless it accords with the patient’s wishes, we may be behaving unethically. There are specific instances, however, where force is legal and even ethical. In some countries force feeding of prisoners is legal, in others not. Patients at risk from dying from malnutrition due to anorexia nervosa fall within the meaning of the UK Mental Health Act and may be force-fed. Interestingly, the mass child murderer, Brady, who recently went on hunger strike in the UK, was force-fed on the order of the High Court, not on the basis that he was a prisoner, but on the grounds of mental illness.
Special situations Some of the most difficult decisions in nutritional support concern malignant and neurological disease.
S.P. Allison
Malignant disease We would none of us have any difficulty, I think, in providing nutritional support for cancer patients to aid cure or significant remission. Similarly, in some cases of terminal cancer obstructing the upper GI tract, enteral feeding may have a useful palliative and supportive role. One of our patients aged 45 with an obstructing and inoperable carcinoma of the stomach was enabled, with the use of a feeding jejunostomy, to remain reasonably well, return to work for two months, and be with his family for four months, at the end of which he died rapidly and peacefully. In contrast, a recent Italian study showed that TPN in terminal cancer patients offered little benefit and exposed patients to additional burden. In the interest, therefore, of beneficence and non-maleficence as well as justice, TPN in most cases of terminal cancer is unjustified.
Motor neurone disease (MND) In this condition, muscles are paralysed but cognition remains. In a two year follow up of all newly diagnosed cases of MND, we found that only 25% benefited from percutaneous endoscopic gastrostomy (PEG feeding) and these were mainly patients with predominantly bulbar features and late loss of limb function. Two patients who did not benefit, clearly submitted to pressure from their families to consent to treatment, which has made us very careful in our selection of patients for treatment, and strengthened us in our resistance to providing it when we know is will give no benefit.
Dementia A recent review by Gillick has reminded us that eating and drinking are the last functions to be lost in this fatal condition and that the loss of these functions heralds death. The capacity to experience hunger and thirst is lost. Several studies have also shown no benefit in terms of survival, quality of life, reflux or pneumonia from artificial nutritional support in advanced dementia. Indeed, an added burden is imposed by the complications of treatment. Compassionate care with sips of fluid and mouth toilet should mark the limit of our intervention.
Stroke The boundaries have yet to be defined, but there is a worrying tendency to use PEGs for convenience of management rather than true need and benefit. We need to define more clearly the indications for artificial feeding in stroke. In any case, treatment should be conducted in the context of a unit expert in the management of this condition.
Persistent vegetative state The Cuzan case in the United States and the Tony Bland case in the UK gave rise to much publicity and debate but were helpful in defining, for doctors, the law in respect of withholding or withdrawing treatment in this fortunately uncommon state, in which all features of personhood are
Ethical and legal aspects lost although brainstem function persists. This is perhaps the one condition which should be referred to the courts for a ruling. Because of the difficulties of early diagnosis, courts will not entertain an application for permission to withdraw treatment within 12 months of onset of the condition. Secondly, courts will only pronounce on the legality of withdrawing treatment, effectively saying to the doctors that it would not be against the law to withdraw treatment if this is in the best interests of the patient, leaving them to decide the issues of benefit and burden.
Justice The growth in demand for health care and the escalation of treatment technology faces all societies with the problem of satisfying infinite demand with finite resources. This increasingly presents doctors with conflicts between beneficence and justice. An expensive but marginally effective treatment provided to one patient may reduce the resources in money, staff and equipment available to treat another patient who might benefit more. Whether we like it or not, therefore, physicians, while having a primary duty to the patient, have a duty to husband resources and use them effectively. It is preferable that such matters be influenced by us than by insurance companies or politicians, but we must think carefully about this issue. In her Presidential Address to ASPEN, Virginia Hermann quotes an article in the Wall Street Journal by a non-medical director of a health care data-analysis and research firm, who wrote: ‘‘A healthy patient is a unit of production, and for all the units of production, there is an optimal production function which can be calculated.’’ Two years ago I received a letter from an administrator, suggesting that my practice should be in accord with the business plan of the Hospital Trust. Such depersonalisation should make us shudder and reminds one of the subordination of doctors and other professionals to serve malignant political systems. There is a fine line to be drawn here and we should be wary of allowing ourselves to drift across it at the behest of politicians and businessmen whose agenda is different to our own. Overtly or not, each society has some form of health rationing. In the United States it is by ability to pay. The system in the UK National Health Service pretends that all patients are covered equally for optimal care, while rationing is applied by growing waiting lists. A more honest attempt at providing health care equitably was made by the State of Oregon. They first decided the question, which should be covered by Medicare and Medicaid funding from taxes and voted that all should be covered. They then addressed the question: ‘‘What should be covered?’’ and appointed expert committees to gather the latest and best evidence on health technologies and their cost. Then by wide consultation in society, with town hall meetings and input from all groups in society, health priorities were ranked in a way which reflected the public will. Lastly the legislatures were asked to vote a budget which effectively drew a line in the list of priorities below which the remaining technologies would not be funded. The legislature was not allowed to alter the order of priorities which the public had decided. The priority list and the budget were then subject to monitoring and annual review, so that anomalies could be corrected. This process
e301 gave rise to some very emotive conflicts, for example, a young boy with leukaemia was denied funding for a bone marrow transplant. The same sum of money provided antenatal care for 1500 poor mothers. These considerations make it all the more important that our PEN societies should support research and clinical trials to enlarge the evidence for our own technology. We should be very clear about who benefits and who does not. We should define what harm may be done, e.g. high complication rates in parenteral nutrition conducted by inexpert staff, or the worse outcome shown in the Veterans Administration trial, when perioperative TPN is given to those without prior malnutrition. In our own unit, we have kept careful records since 1983 and were able to conduct an audit of patients who received TPN for acute gastrointestinal failure for an average of 50 days. We argued that survival for this length of time without feeding would have been very unlikely without TPN, which can be regarded as the treatment of acute gastrointestinal failure. Seventyfive percent of patients with benign disease were alive 10 years later. Although, therefore, an average 50 days of TPN was costly, the resulting survival and cost per year of life saved of £ 4700, justified the treatment as comparable in effectiveness and cost to other well-accepted technologies. Similar data in terms of longevity and life quality has been produced, justifying the selective use of longterm home parenteral nutrition. ‘‘Considering these things’’, I have drawn up a list summarising some of the main ethical and legal aspects of nutritional support. Poets have the ability to distil truth into a few telling words. The poet James Kirkup, after witnessing my father carry out a mitral valvotomy in 1951, wrote a poem ‘‘A correct compassion’’ which is published in the Oxford Book of Twentieth Century Verse. In the last verse, he wrote: ‘‘For this is imaginations other place Where only necessary things are done, with the supreme and grave Dexterity that ignores technique, with proper grace Informing a correct compassion that performs it love and makes it live.’’ James Kirkup, 1951
Summary Ethical and legal considerations increasingly influence clinical decisions. e Increased complexity of decisions in our technical and medico-legal climate in which the patient is better informed. e The physician’s first duty is to the patient (beneficence, non-maleficence) but he or she also has a duty to society (Justice). e It is the responsibility of society as a whole to decide what resources are to be devoted to health care after full and public discussion and consultation. e The patient’s autonomy must be respected but no physician can be forced to undertake treatment that is futile or that he or she considers against the patient’s interest.
e302 e The interest of the individual must however be protected against arbitrary action or decisions by government, purchasing bodies, insurance companies or individuals by a Bill of Rights which is safeguarded by the courts acting independently of government. e Care of the sick entails the basic duty of providing adequate and appropriate fluid and nutrients by mouth. e As long as a patient can swallow and expresses a desire or willingness to drink or eat, fluid and nutrients should be given provided that there is no medical contraindication. This is basic care. Artificial feeding by tube or by vein is a medical treatment. e A treatment plan for any patient should include provision for fluid and nutrition. Health carers should work as a team. e If the plan is to maintain an adequate intake the ethical duty is to provide this, with the patient’s consent, orally or by artificial means. e If the illness is terminal, religious, ethical and legal authorities consider that compassionate care should include only measures to ensure comfort. Prolongation of misery or dying by burdensome technology is unethical. e Fluid or food given by tube enterally or parenterally is legally medical treatment and not basic care. e For an incompetent adult, the doctor is responsible in law for doing what is in the patient’s best interests. He should seek to ascertain the previously expressed views of the patient, consulting the other members of the team and family. The legal position of living wills and the family varies between countries. e Special considerations apply regarding the responsibility of parents to make a decision on behalf of their child and consent for the treatment by adolescents. e Application to the court should be made regarding the legality of withdrawing artificial hydration and nutrition from a patient in a vegetative state. e Under carefully specified circumstances, it can be legal to enforce nutritional treatment on an unwilling patient, e.g. anorexia nervosa or hunger strikers.
S.P. Allison e It could be construed as unethical not to be able to conduct a time-limited trial of treatment for fear of being unable to withdraw it if it proves of no benefit. e 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.
Conflict of interest There is no conflict of interest.
Further reading 1. Allison SP. The uses and limitations of nutritional support. Clin Nutr 1992;11:319. 2. Lennard-Jones JE. BAPEN report. Ethical and legal aspects of clinical hydration and nutritional support;, ISBN 1 899467 25 4; 1988. Available from BAPEN, PO Box 922, Maidenhead, Berks, SL6 4SH. 3. Dixon J, Welch HG. Priority setting: lessons from Oregon. Lancet 1991;337:891. 4. Gillick M. Rethinking the role of tube feeding in patients with advanced dementia. NEJM 2000;342:206. 5. Herrmann VM. Nutrition support: ethical or expedient and who will choose? Presidential Address to ASPEN. JPEN 1999;23:195. 6. Kitzhaber JA. Prioritising health services in an era of limits: the Oregon experience. Lancet 1993;307:373. 7. Macfie J. Ethical and legal considerations in the provision of nutritional support to the perioperative patient. Curr Opin Clin Nutr Metab Care 2000;3:23. 8. Messing B, Landais P, Goldfarb B, Irving M. Home parenteral nutrition in adults: a multicentre survey in Europe. Clin Nutr 1989;8:3. 9. O’Hanrahan T, Irving MH. The role of home parenteral nutrition in the management of intestinal failure e report of 400 cases. Clin Nutr 1992;11:331. 10. Shields PL, Field J, Rawlings J, Kendall J, Allison SP. Long-term outcome and cost-effectiveness of parenteral nutrition for acute gastrointestinal failure. Clin Nutr 1996;15:64.