Ethical and Legal Aspects of Enteral Nutrition

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  • Clinical Nutrition (2006) 25, 196202

    INTRODUCTION PART TO THE ESPEN GUIDELINES ON ENTERAL NUTRITION

    Ethical and Leg

    U. Kornera,, A. BondB. Messingf, F. Oehm

    aChariteUniversitatsmedizinique,kt, SScarbUpstanteroon, Bologyniver

    Received 21 January 2006; accepted 21 January 2006

    equal access to healthcare for all.

    ARTICLE IN PRESS

    http://intl.elsevierhealth.com/journals/clnu

    Corresponding author.0261-5614/$ - see front matter & 2006 European Society for Clinical Nutrition and Metabolism. All rights reserved.doi:10.1016/j.clnu.2006.01.024

    E-mail address: uwe.koerner@charite.de (U. Korner).The law regards withholding and withdrawing treatment as the same. It alsodefines the provision of food and drink by mouth as basic care and feeding byartificial means as a medical treatment. It requires doctors to act in the bestinterests of the patient.

    The full version of this article is available at www.espen.org.& 2006 European Society for Clinical Nutrition and Metabolism. All rights reserved.KEYWORDSEnteral nutrition;Tube feeding;Oral nutritional sup-plements;Ethics;Law;Patient autonomy;Incompetence

    Summary European ethical and legal positions with regard to EN vary slightly fromcountry to country but are based on a common tradition derived from Graeco Romanideas, religious thought and events of the 20th century. The Hippocratic tradition isbased on beneficience (do good) and non-maleficience (do no harm). Religiousthinking is based upon the presumption of providing food and drink by whatevermeans unless burden outweighs benefit. The concept of autonomy (the patientsright to decide) arose following in the decades after the Second World War and isenshrined in Human Rights law. The competent patient has the right to participate indecision making and to refuse treatment although the doctor is not obliged to givetreatment which he or she considers futile or against the patients interests. Theincompetent patient is protected by law. The fourth principle is that of justice i.e.bCentre lemanique dethcGeriatrischer SchwerpundDepartment of Surgery,eDepartment of Surgery,fService dhepatogastroegAbt. IntensivrehabilitatihDepartment GastroenteriClinical Nutrition Unit, Ual Aspects of Enteral Nutrition

    olfib, E. Buhlerc, J. MacFied, M.M. Meguide,icheng, L. Valentinih, S.P. Allisoni

    Berlin, Berlin, GermanyBatiment de Provence, Lausanne, Switzerlandtadtische Kliniken Esslingen, Esslingen, Germanyorough Hospital, Scarborough, UKte Medical University, Syracuse, USAlogy et da`ssistance nutritive, Hopital Lariboisiere, Paris, Franceavaria Klinik Kreischa, Kreischa, Germany, ChariteUniversitatsmedizin Berlin, Berlin, Germanysity Hospital, Queens Medical Centre, Nottingham, UK

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    Ethical and Legal Aspects of Enteral Nutrition 197Introduction

    These guidelines address some of the ethical andlegal issues which are increasingly part of theclinical decision-making process involved in provid-ing nutrition support. The European ethical tradi-tion is based on the GraecoRoman ideas, refinedby religious considerations and further developedduring the 20th century.

    Q: What is the basis for the European ethicaltradition in Medicine?

    A: The Hippocratic ethical code is based onbeneficience i.e. do good, and non-maleficiencei.e. do no harm. This tradition was, however,paternalistic, and it was not until the 20th centurythat the notions of autonomy i.e. the patientsright to decide, and justice i.e. equal rights forall, were introduced. Religious ideas have alsocontributed.Comment: The Hippocratic tradition, refined by

    Roman physicians, was based on the do good butdo no harm principles. It also embodied the notionof confidentiality but eschewed autonomy, and wasmotivated by philanthropia i.e. do good in orderto preserve the physicians reputation. Hippocrateswrote Give necessary orders with cheerfulness andsincerity, turning his (the patients) attention awayfrom what is being done to himy revealing nothingof the patients future or present condition In the1st century AD, Scribonius Largus, physician to theEmperor Claudius, took a step nearer our modernattitude by encouraging physicians to base deci-sions on Humanitas, that is love of mankind, and onMisercordia, or mercy. Enteral feeding has a 500 yrhistory in Europe and its principles were defined byJohn Hunter in 1793, when he wrote concerning apatient with paralysis of the swallowing muscles. Itbecomes our duty to adopt some artificial mode ofconveying food into the stomach, by which thepatient may be kept alive while the diseasecontinues. The concept of starve a fever andfeed a cold, prevalent since Galen in the 4thcentury AD, was abandoned in the 19th century,when several authors emphasised the importanceof feeding in medical care.As a new principle the respect for patients

    autonomy arose in the seventies of the 20thcentury. The competent patient now has the rightto participate in all the decision-making concerninghis treatment, and the law provides safeguards forthe patient who is incompetent i.e. incapable ofunderstanding or making decision. The paternalis-tic approach of Hippocrates was therefore super-seded by that of autonomy. On the other hand,despite a number of recent legal cases, the doctoris still not obliged to submit to pressure by thepatient, relatives or others, to give treatmentwhich he or she believes to be futile or against thepatients interests i.e. the burden or adverseeffects outweigh benefit. European religious tradi-tions, both Christian and Jewish, are sometimeserroneously supposed to favour preservation of lifeat all costs. In fact, Roman Catholic teaching isclear that there should be a presumption in favourof providing nutrition and hydration provided thatit is of sufficient benefit to outweigh the burdensto the patient. This involves judgements concern-ing the quality of life which has assumed increasingimportance in assessing the efficacy of treatment.One may contrast the use of tube feeding insituations where it may not prolong life, but whereit improves its quality, with treatments which mayprolong life at the expense of prolonged suffering.In most countries the physician may not end life,but on the other hand is not required officiously toprolong the process of dying. Orthodox Jewishthinkers regard the dying person in a special lightand argue against impediments to dying in the finalyear of life.The growth of National Health Services in Europe

    has seen the increasing recognition of justice(equal access to healthcare for all) as an importantethical concept. On the other hand the growth indemand for healthcare and new technical develop-ments face all societies with the problem ofsatisfying infinite demand with finite resources.Society and its political representatives have yet

    to face up to the problem of enormously expensiveand sometimes futile treatment of the few, whichmay so consume resources in staff, facilities andmoney as to deny proper treatment of those morelikely to benefit and survive. The doctor is there-fore faced with balancing justice against bene-ficence and autonomy, and trying to deploy thelimited resources available to achieve the max-imum benefit. Through legal and other conflicts(see below), there may be difficulties in the way ofwithdrawing expensive but ineffective treatment inorder to use the resources of the nutrition careteam to better effect. In cases of conflict, theadvice and support of local ethical committees maybe helpful.

    Q: Is there a difference between ethicalprinciples and legal framework?

    A: Yes, although the laws of European countries(which may differ in some details between

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    provision of adequate fluid and nutrients by mouth

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    U. Korner et al.198countries) are based on the common ethicaltradition described above.Comment: Ethical codes of caring professions

    include not only minimal acceptable standards ofbehaviour, but also ideals, and have been describedas the collective conscience of our profession.The law, on the other hand, defends individualrights and liberties and sets minimum standardsbelow which professional conduct can be regardedas lacking in care, negligent or downright criminal.It also protects those who are unable or incompe-tent to make decisions on themselves. In addition,it provides some safeguards and protection fordoctors and other professions. It has embodied theprinciple, for example, that no doctor can beobliged to provide treatment which he/she be-lieves to be against the patients interests or futile.This delicate balance between patients legal rightsand professional judgement has, however, beenthreatened by recent unfortunate legal judgementsin the UK and USA, whose consequences have yet tobe defined. Unprincipled political interference,stimulated by extreme pressure groups, is also athreat that the professions will need to resist.Fortunately, Europe in general has continued tomaintain a liberal and humane approach to theseproblems.In the judgement of risk versus benefit in the

    medico-legal context, it is clearly vital that theprofessional who wishes to avoid or to provide adefence against litigation should be fully conver-sant with the latest medical evidence and beappropriately trained and experienced.

    Q: What are the implications of the law forthe organisation and conduct of nutritionalsupport?

    A: As with other treatments, the best results areobtained by teams trained and organised to carry itout. This is of particular relevance to artificialmeans of nutritional support.Comment: There is sufficient evidence, in the

    case of parenteral nutrition, that specialisednutrition teams obtain the best results, with thefewest complications. There is some evidence also,in the case of enteral tube feeding, that experi-enced and properly organised groups, working toagreed protocols, have fewer complications andbetter outcomes than those who provide occasionalor ad hoc treatment. There is, therefore, a risk oflitigation if artificial nutrition, conducted by theinexpert, results in serious complications, beyondthe normal risks inevitably associated with anyform of intervention.means is a medical treatment, involving profes-sional judgement and intervention, governed bythe laws related to medical practice. On the otherhand, oral intake is governed by the laws related toduty of care and to Human Rights, whereby anyperson, organisation or institution that undertakesto provide care is obliged to provide and ensure anadequate oral intake of food and fluid wherepossible and as acceptable to the patient. Acompetent patient is entitled to refuse food anddrink and, indeed, many dying patients do. It isunkind and improper to try to force unwillingpatients to eat or swallow.

    Q: When is a patient competent to exerciseautonomy and who decides for the incompetentpatient?

    A: The laws differ in detail and emphasis on thispoint between countries, although the principlesremain similar. For the definition of competence,see below. If by reason of psychiatric or braindisease the patient is not able to understand theissue or express a view, the doctor has a number ofoptions.

    1. Has the patient written a living will expressinghis/her wishes concerning treatment underthese circumstances? Such written testamentsshould be respected and will increasingly beregarded as legally binding.

    2. Alternatively, has the patient ever expressedhis/her wishes verbally to family or friends? Suchexpressions should be considered and respected.

    3. In some countries the family has legal rights tomake decisions.including oral nutritional supplements in mostinstances as well as help with drinking and eatingwhere necessary is regarded by the law as basiccare.Comment: Although paediatricians have argued,

    with good reason, that tube feeding of the neonateis part of basic care, in the older child and adult itis generally accepted that nutrition by artificialacharly considered therapy, oral nutritional supple-nts can be basic care as well as therapy. Oraltritional supplements are therapy under certainnditions e.g. if pharmacologic effects should beieved by specific composition (BCAA, etc.) Theand

    A: The law differentiates between oral intake

    enteral tube feeding. While tube feeding isIs i

    Q: How does the law regard enteral nutrition?t basic care or a medical treatment?

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    Ethical and Legal Aspects of Enteral Nutrition 199then general, a patient has the ability to consenten he/she is able to understand the benefits,ks and consequences of the respective interven-n as well as the consequences of the omission ofmeasure, and is able to make a self-determinedcapIomment: Even patients without legal compe-ce under civil law should be informed about thenned measures according to his/her mentalacity.the patient, in a legally approved manner, asincapable of making rational decisions. Thisincludes those with anorexia nervosa and severedepression, but not those imprisoned for otherreasons. Indeed it is conceivable that doctorscould be sued for failing to give artificialnutrition in such cases where malnutrition is lifethreatening.

    3. Primary brain or other disease, which rendersthe patient temporarily or permanently incap-able of understanding or of expressing, wishesby any means.2.Children under 14 resp. 18 yr: In children under14 yr (in some countries under 16 yr), theparents have the authority to make decisionsunless the courts specifically remove or takeover that authority. Adolescents between 14 and18 yr should be informed according to theirpsychosocial maturity and their consent shouldbe recognised and/or carried out.Severe psychiatric illness. Whenever a psychia-1.the patient is competent or not.

    : How is legal competence defined?

    : Competence under civil law is not to beuated with patients ability to give his/hersent. Only the following conditions excludeividuals from legal competence under civil law:4. The patient may previously have appointed amember of the family, a friend, or lawyer to betheir legal guardian at a time when he/she wasincompetent to make decisions. Such personshave legal autonomy.

    5. In a few cases, (see below), reference to thecourts may be necessary. The court may appointguardian ad litem (particularly in children) orempower the doctor to take a decision in thebest interests of the patient.

    6. Although it is not legally binding to do so, thedoctor should always consider and respect theviews of all the members of the team who shouldbe participants in any decision making whetherthe patient is in a less confused phase.

    Q: What should be done in case of doubtwhether enteral tube feeding will be beneficialor when the prognosis of the underlying condi-tion is uncertain?

    A: If in doubt give a trial of treatment. Thisshould be for a defined period agreed among allmembers of the team and with the patients familyand/or representative. Goals and criteria forcontinuing or discontinuing the feed should...

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