american academy of pediatrics guidelines on ......532 pediatrics vol. 93 no. 3 march 1994 american...

532 PEDIATRICS Vol. 93 No. 3 March 1994

AMERICAN ACADEMY OF PEDIATRICS

Guidelines on Forgoing Life-Sustaining Medical Treatment

Committee on Bioethics

Most children who become ifi, even those with lifo-threatening disorders, recover to lead satisfying lives.Nonetheless, the course of disease may at times causehealth care professionals and families to considerwhether continued treatment truly represents the bestoption. Sometimes limiting or stopping life supportseems most appropriate, especially if treatment onlypreserves biological existence or if the overall goal oftherapy has shifted to the maintenance of comfort.Based on the existing consensus in ethics and law, thefollowing guidelines for professionals caring for chil-dren suggest elements in decisions to forgo lifo-sustaining medical treatment (LSMT).�

Decisions to withhold or withdraw LSMT may so-riously tax the intellectual and emotional reserves ofall parties. Patients, families, physicians, and othermembers of the medical care team should have accessto and feel free to use ethics consultants or ethics corn-

mittees in addition to the other resources on whichthey usually rely.5’6

PRELIMINARY NOTATIONS

Life-sustaining medical treatment encompasses all in-terventions that may prolong the life of patients. Al-though LSMT includes the dramatic measures of con-temporary practice such as organ transplantation,respirators, kidney (dialysis) machines, and vasoac-tive drugs, it also includes less technically demandingmeasures such as antibiotics, insulin, chemotherapy,and nutrition and hydration provided intravenouslyor by tube.7

The term “forgo” refers to both stopping a treat-ment already begun as well as not starting a treat-ment. Although many health care professionals feelreluctant to discontinue lifo-sustaining treatments,most philosophical and legal commentators find noimportant ethical or legal distinction between not in-stituting a treatment and discontinuing treatment a!-ready initiated. Fear about stopping therapy maykeep clinicians from beginning treatments that mayhelp some patients, particularly when great uncer-tainty prevails. A better course often includes initi-

ating interventions that, if they later prove unhelpful,may be stopped. Continuing nonbeneficial treatmentharms many patients and may constitute a legal, as

This statement has been approved by the Council on Child and Adolescent

Health.The recommendations in this statement do not indicate an exclusive courseof treatment or serve as a standard of medical care. Variations, taking intoaccount individual circumstances, may be appropriate.PEDIATRICS (ISSN 0031 4005). Copyright © 1994 by the American Acad-

emy of Pediatrics.

well as moral, wrong. Those who feel culpable andemotionally strained when faced with withdrawingtreatment deserve sympathy and one should be sen-sitive to those upset by decisions to stop therapy.However, ethical theory and legal practice providereasons to start or stop treatments based primarily onthe relative benefits and burdens for the patient.8

Generally, parents give permission for the treat-ment of children who cannot do so themselves. (See“Decision Making for Patients Who Lack Decision-Making Capacity.”) However, the American Acad-emy of Pediatrics emphasizes that physicians andparents should give great weight to clearly expressedviews of child patients regarding LSMT, regardless ofthe legal particulars.

For such serious matters as LSMT, the medical planusually should conform to the values and choices ofthe patient and his or her family. In some circum-stances, only one parent wifi be reasonably availablebefore some decisions must be implemented. In othersituations, although only a single parent will have ac-tual guardianship or legal responsibifity, the clinicianmay have moral and psychological reasons to con-sider the views of the other biological parent. In yetother instances, surrogates besides the parents willhave decision-making authority; these may includeother family members appointed guardians by acourt, guardians ad litem, or representatives of childprotective agencies maintaining custody of the child.

Decision-making capacity and the legal term “com-petency” refer to the ability of a person to make de-cisions at particular times under particular circum-stances. One formulation of this overall capacityinvolves three essential elements: (1) the ability to un-derstand and communicate information relevant to adecision; (2) the ability to reason and deliberate con-cerning the decision; and (3) the ability to apply a setof values to a decision that may involve conflictingelements.9 Each potential decision maker regardingLSMT should manifest these abilities. However, chil-dren should have the opportunity to participate indecisions about LSMT to whatever extent their abili-ties allow.

Many decisions regarding life support for childrencall for the use of the “best interests” standard. This

involves weighing the benefits and burdens of LSMT.The benefits may include prolongation of life (under-standing that the continuation of biological existencewithout consciousness may not be a benefit); im-proved quality of life after the LSMT has been applied(including reduction of pain or disability); and in-creased “physical pleasure, emotional enjoyment,

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AMERICAN ACADEMY OF PEDIATRICS 533

and intellectual satisfaction” (as cited in a ruling bythe New Jersey Supreme Court).’#{176}’P�5

The burdens of LSMT may include intractable pain;irremediable disabffity or helplessness; emotionalsuffering; invasive and/or inhumane interventionsdesigned to sustain life; or other activities that so-verely detract from the patient’s quality of life. (Thephrase “quality of life” refers to the experience of lifeas viewed by the patient, ie, how the patient, not theparents or health care providers, perceives or evalu-ates his or her existence. The American Academy ofPediatrics specifically rejects attempts to equate qua!-ity of life with the notion of “social worth” as judgedby others. Such equations have unfortunately tainteddiscussions oflimiting LSMT for children. Avoidanceof the term quality of life would, however, ignore itswidespread use.)

STATEMENT OF GENERAL PRINCIPLES

Presumption in Favor of Treatment

The American Academy of Pediatrics believes thatphysicians should provide lifo-sustaining medicalcare in conformity with current medical, ethical, andlegal norms. Physicians should remember that twobroad principles guide the implementation oftherapy. First, beneficence suggests that clinicians jus-iffy the use of treatments based on the benefits theyprovide, not simply on the ability to employ them.The related notion of nonmaleficence reminds physi-cians to consider potential harm to patients. Harmincludes obvious physical problems such as pain butmay also include psychological, social, and economicconsequences. Second, seif-determination or au-tonomy accepts the likelthood that different personsmayjudge benefits differently. Our social system gen-erally grants patients and families wide discretion inmaking their own decisions about health care and incontinuing, limiting, declining, or discontinuingtreatment, whether life-sustaining or otherwise.Medical professionals should seek to override familywishes only when those views clearly conifict with theinterests of the child.

Right to Decide and To Be Informed

Whether they are child patients, parents, or othersurrogates, health care decision makers have the ethi-cal and legal right to adequate information about rea-sonably available diagnostic and therapeutic options(including risks, benefits, nature, and purpose of theoptions).

Right to Refuse Treatment

As a general rule, children who meet statutory cri-teria for emancipation and those who have beenjudged mature for purposes of medical decisions mayrefuse unwanted medical intervention. Most courtsthat have considered the issue also recognize that in-competent patients, including children, need not re-ceive all possible treatments in each case.’#{176}As notedpreviously, society generally presumes that parentsshould exercise the right to refuse medical treatmentwhen nonautonomous children cannot do so forthemselves.

Decisions to Forgo Are Particular to Specific Treatment

A decision to limit, decline, discontinue, or other-wise forgo a particular treatment or procedure appliesspecifically to that treatment or procedure. Such de-cisions do not imply that any other procedures ortreatments are to be forgone, without a specific do-cision to do so. Thus, the decision to forgo use of an-tibiotics in the case of suspected infection does notmean that the patient should not receive oxygen, an-algesics, or rango-of-motion therapy aimed at provid-ing comfort. Similarly, a do-not-resuscitate ordershould never signal the abandonment of a patient.When doubts exist regarding the appropriateness ofparticular treatments, the parties should ask them-selves if the therapies of concern further the overalltreatment plan. Such a plan should encompass thegeneral goals of treatment, induding its scope andlimits, and the means suited to achieving those goals.

Preservation of Respect for the Patient

The needs of the child must remain primary, andmeasures necessary to assure comfort must be main-tained at all times. Comfort measures include appro-priate nursing and hygienic care as well as analgesics.

Physicians’ Obligations

Individualphysicians who generally decline to par-ticipate in the limitation or withdrawal of therapyshould communicate their position to patients andfamilies as soon as that information becomes relevant.When physicians do not wish to participate in for-going LSMT, they have a legal duty to arrange for careby another physician before removing themselvesfrom the relationship.

Availability of Guidelines to Patients and/or Families

Educational material with substantially the samemessage as these guidelines should be made avail-able, whenever relevant, to patients and/or theirfamilies.

Presumption Against Judicial Review

Families and health care professionals should worktogether to make decisions for patients who lackdecision-making capacity. Recourse to the courtsshould be reserved for occasions when adjudicationis clearly required by law or when concerned partieshave disagreements that they cannot resolve, despiteappropriate consultation, concerning matters of sub-stantial importance.”

GUIDES FOR DECISION MAKING

Informing for Decision Making

Physicians have the responsibility to provide thepatient, parents, or other appropriate decision makerswith adequate information about applicable thera-peutic and diagnostic options.

This information should include the risks, discom-forts, side effects, and estimated financial and othercosts of treatment alternatives, the potential benefits,and the likelihood, if known, ofwhether the treatmentwill succeed.


534 FORGOING LIFE-SUSTAINING MEDICAL TREATMENT

The physician should also provide advice aboutwhich option(s) to choose. That is, physicians shoulddo more than offer a “menu” of choices-they shouldrecommend what they believe is the best option forthe patient under the circumstances and give any rea-sons, based on medical, experiential, or moral factors,for such judgments. However, physicians should ro-mind families that they may accept or reject the phy-sician’s recommendations.

The physician should elicit questions; providetruthful and complete answers to such questions; at-tempt to ascertain whether or not the decision makerunderstands the information and advice provided;and attempt to enhance understanding as needed.

The understanding of options by patients, parents,or other decision makers will often increase over time.Therefore, decision making should be treated as aprocess, rather than as an event. This implies, in part,that patients and/or their surrogates may changetheir minds as they develop an appreciation of theclinical situation and its meaning for their lives.

Withholding of Information From Patients, Parents, orOther Decision Makers

There is a strong presumption that all informationneeded to make an appropriate decision about healthcare (including a decision to forgo LSMT) should beprovided to the patient, parents, or surrogates. Ex-perience and study suggest that most patients, familymembers, or other decision makers want to hear thereality of their situation.12”3 Open and honest com-munication reduces tension in the physician-patientrelationship.

Information may not be withheld on the groundsthat it might cause the patient or surrogate to declinea recommended treatment or to choose a treatmentthat the physician does not wish to provide. Nor mayinformation be withheld because its disclosure mightupset the patient, parents, or other decision maker.

Physicians may withhold information when a com-petent patient clearly indicates that he or she does notwish to have the information provided, and the phy-sician has previously offered to provide such infor-mation. Some commentators believe that parents orother surrogates do not have the same prerogative torefuse information or decline participation in decisionmaking.’4

Physicians may withhold information if they bo-lieve the information would pose an immediateand/or serious threat to a patient’s or surrogate’shealth or life. These circumstances will occur rarely, ifever. A physician who withholds information as-sumes the burden of supporting the decision not tomake customary disclosures. The physician shouldwithhold only the specific information that mightproduce a threat. Even when immediate full disclo-sure may produce harm, the physician may succeedin providing partial information gradually, until fulldisclosure has occurred.

When the physician purposely limits disclosure, heor she should document the reasons in the medicalrecord.

Collaborative Physician-Patient (orPhysician-Surrogate) Decision Making

When the attending physician believes the treat-ment no longer confers a benefit and should be for-gone, the patient, parents, or other surrogate shouldbe so informed. Children, even those of early schoolyears, often appreciate their medical situations farbetter than their family members, guardians, or healthcare providers believe.15 In many cases, young chil-dren deserve to hear the general conclusions of do-cisions that will affect their continued survival. Chil-dren should not be deprived of opportunities to saygoodbyes to loved ones. Well-meaning attempts toshield children from this information may result inthe breakdown of open communication and trust bo-tween patients and those caring for them.

Under some circumstances, child patients and theirparents will not agree on the best plan of action. Suchsituations defy easy rules-of-thumb. The parties mustconsider, among other concerns, the facts and gravityof the situation; the maturity, knowledge, and intel-ligence of the child; and the reasons for and strengthof the feelings of other family members. The partiesshould consider seeking consultative help from thefollowing: (1) child psychiatrists, family therapists, orsimilar professionals skilled in behavioral assessmentand counseling; (2) ethics consultants or an ethicscommittee; (3) other sources of family support, in-cluding religious advisers; and, if necessary, (4) thecourts.

Physician-Patient (or Physician-Surrogate) Disputes

Patients or surrogates may not compel a physicianto provide any treatment that, in the professionaljudgment of that physician, is unlikely to benefit thepatient.’6 However, physicians should not use theirviews that a treatment provides no benefit (one thatthey therefore do not wish to offer) as a reason forcircumventing possibly difficult discussions with pa-tients. For example, the medical judgment that car-diopulmonary resuscitation will not succeed (that ro-suscitation is “futile”) in a patient with severelyinjured lungs from bronchopulmonary dysplasia ornecrotizing bronchiolitis should not serve as an ex-cuse to avoid talking about do-not-resuscitate orders.Hospitals should have policies addressing intractabledifferences between staff and patients or families.

If the patient or surrogate makes a decision that thephysician cannot accept in good conscience, the phy-sician should arrange transfer of the patient’s care toanother physician or hospital wiffing to accept thedecision.

If the physician can make no such arrangements,action by the physician to continue or forgo treatmentwithout extensive consultation seems unwise. Suchdisputes deserve careful consideration of their ethical,legal, and administrative implications. Only in therare situations in which extended counseling effortsfail, and no physician or facility will accept the pa-tient, should physicians or hospitals refer these casesto the courts.


AMERICAN ACADEMY OF PEDIATRICS 535

Consultation With Family

Professionals who care for children should stronglyencourage their patients to discuss LSMT with theirfamilies and with other dose friends and adviserswell in advance of the need for decisions. However,when requested to do so, medical professionalsshould respect the privacy and confidentiality of pa-tients legally entitled to make their own decisions(emancipated minors or those judged mature), in-cluding decisions about LSMT. Physicians shouldhonor the desire of patients and parents to preventdisclosure of medically related information to mem-bers of the extended family in all but the most unusualcircumstances.

DECISION MAKING FOR PATIENTS WHO LACKDECISION-MAKING CAPACITY

� The following sections delineate concerns aboutdecision-making capacity and standards to be appliedwhen patients lack such capacity. Many medical pro-fessionals who care for children, as a matter of course,take the views of the children about treatment seri-ously. However, the gravity of decisions about LSMTrequires careful, explicit attention to the wishes andfeelings of the children, regardless of the legal statusof the patients.

Definitions

The definition of emancipated minor varies somo-what from state to state. Generally, legislation definesemancipated minors as those who have graduatedfrom high school, members of the armed forces, thosewho are married, those who are pregnant or parents,or those who live apart and are financially indepen-dent from their parents.

The legal notion of mature minor varies even more.Many courts and some legislatures recognize thatindividual children, beginning at approximately age14 years, may be assessed sufficiently mature tomake decisions, including some medical ones, forthemselves.

The substitutedjudgment standard refers to situationsin which surrogates can make inferences about thepreferences of previously competent patients. Whensuch a patient’s wishes are known or can be deduced,surrogates should replicate the decision that the pa-tient would have made under the circumstances.Thus, this legal standard applies for children who areemancipated or considered mature.

Presumption of Capacity:Decision-Making Capacity in General

In the case of conscious and alert emancipated mi-

nors or those judged mature minors, the ethical andlegal presumption of capacity should govern, unlesscountervailing evidence arises to call the presump-tion into question.

The professional staff may question a patient’s ca-pacity if they suspect or diagnose conditions such asdelirium, dementia, depression, mental retardation,psychosis, intoxication, stupor, or coma. Lack ofdecision-making capacity can be transient and spo-cific to a particular decision. Therefore, patients who

suffer from any of these conditions may not lack ca-pacity at all times for all purposes, and the staff mayneed to reassess decision-making capacity from timeto time.

Refusal of specific treatment that most patientswould agree to does not alone mean the patient lacksdecision-making capacity, but such refusals mayserve as a basis for inquiring into the patient’sdecision-making capacity.

Standards for Decision Making for Patients LackingDecision-Making Capacity

A surrogate must make health care decisions forpatients who lack decision-making capacity.

The substituted judgment standard should be usedfor children who are emancipated or mature whentheir wishes are known or may be deduced.

The best interests standard serves as the basis fordecisions for patients who have never achieveddecision-making capacity, induding infants andyoung children. This standard does not easily applyto patients in whom a permanently unconscious statehas been reliably diagnosed. It is difficult to claim thattheir continued life benefits them, although we cannotsay with certainty that they suffer any burden. Phy-sicians and families should also consider whethercontinued treatment conforms with respect for themeaning of human life and accords with the interestsof others, such as family members and other lovedones.

Formal Assessment of Capacity

As a rule, the attending physician should assess anddocument the capacity of a patient to make or assistin making decisions about forgoing treatment. Formaldevelopmental, psychiatric, or other consultationmay help determine the patient’s abilities and the ap-propriateness of the child’s participation in makingdecisions.

Advance Directives

Legal uncertainty surrounds the status of “livingwills” or durable power-of-attorney documents ex-ecuted by minors, even those recognized as emanci-pated or mature. Thus, in most situations, childrenwifi not have formal advance directive documentseven under the Federal Patient Self-DeterminationAct.17 However, physicians and others should accordconsiderable weight to the feelings minor childrenmay have expressed before losing the capacity tocommunicate clearly regarding LSMT. If the patienthas executed a living will or any other form of ad-vance directive for health care, that document shouldserve as strong evidence of the patient’s wishes.

Pediatricians should encourage parents of dyingchildren to plan alternatives to caffing emergencymedical personnel if the family does not desireresuscitation.

DOCUMENTATION OF DECISIONS AND

ENTRY OF ORDERS

The American Academy of Pediatrics recommendsexplicit documentation, in the form of clear orders


536 FORGOING LIFE-SUSTAINING MEDICAL TREATMENT

and explanatory progress notes in the medical record,to encourage involved health care providers to adhereclosely to the goals of treatment agreed on by thepatient, parents, or other decision maker, and thepatient’s physician.

Orders

Physicians should encourage hospitals to developand maintain written policies permitting the forgoingof lifo-supporting treatment of patients, includingchildren, in appropriate circumstances. Such policiesshould state that when it has been determined that aparticular LSMT is to be forgone, the attending phy-sician or a designee must write an order in the pa-tient’s medical record. Telephone orders alone are notacceptable under most circumstances. The attendingphysician has the responsibifity to elicit and considerthe views of other members of the professional staffregarding treatment limitations before entering or-ders limiting LSMT. He or she should discuss themeaning of any order limiting treatment with the staffand ensure that all involved understand such ordersand their implications.

Progress Notes

At the time an order limiting LSMT is written, theattending physician should write a companion entryin the progress notes including the following infor-mation: diagnosis, prognosis, patient’s or otherdecision-maker’s wishes, the content of discussionswith involved parties, any disagreements or unre-solved issues, and the recommendations of the treat-ing team and consultants.

Acceptable Orders

Each situation deserves individual consideration.This usually requires detailed orders appropriate tothe specific case. However, physicians may indicatethe following orders to facilitate communication.

No Specified Limits on Therapy These patients willreceive all medically appropriate interventions, in-cluding treatment of cardiopulmonary arrest. All pa-tients are assumed to be in this category unless it isotherwise noted in the patient’s orders and explainedin progress notes.

Limited Therapy These patients receive medicallyindicated treatment but have specific interventions,diagnostic or therapeutic, forgone as noted in the pa-tient’s orders and explained in progress notes. Forexample, one may omit cardiopulmonary resuscita-tion, provide all reasonable therapies for respiratorydisease, but forgo tracheal intubation and/or mo-chanical ventilation, or provide “comfort measuresonly,” such as nursing care plus appropriate analgesiaand sedation. Interventions already begun may bewithdrawn. Forgoing specffic measures does not pro-dude initiation or continuation of other indicated di-agnostic tests or therapies.

ACKNOWLEDGMENTSThis document draws extensively on a framework developed

by Meisel and others.’ The American Academy of Pediatrics state-

ment focuses on the special issues that pertain to children anddarification of substantive matters beyond the largely proceduralapproach in that artide.

Co�m�in-r� ON Bior�mics, 1992 to 1994Arthur Kohrman, MD, ChairEllen Wright Clayton, JD, MDJoel E. Frader, MDMichael A. Grodin, MDIan H. Porter, MDVirginia M. Wagner, MD

LIAISON REPRESENTATIVES

Robert C. Cefalo, MD, PhDElena A. Gates, MDAmerican College of Obstetricians

and Gynecologists

Nuala P. Kenny, MDSerge Melancon, MDCanadian Paediatric Society

SECrION LIAISON

Anthony Shaw, MD, Section onSurgery

CONSULTANT

Rebecca Dresser, JD

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