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Ethical and Legal Issues in Intensive Care John J. Paris, SJ, PhD, J. Cameron Muir, MD, and Frank E. Reardon, JD Paris JJ, Muir JC, Reardon FE. Ethical and legal issues in intensive The largest, most comprehensive, and best funded care. J Intensive Care Med 1997;12:298–309. study ever undertaken on decision-making for criti- The findings of the SUPPORT study, the largest, most compre- cally ill patients, ‘‘The Study to Understand Progno- hensive and costly study ever undertaken on decision making sis and Preferences for Outcomes and Risks of for critically ill patients, revealed a wide ranging gap between Treatment,’’ commonly known as the SUPPORT patient preferences and physician behavior with regard to study, documents many of the ethical issues in in- treatment decisions for seriously ill patients. The ethical tensive care [1]. The study, involving over 9,000 issues raised by that disparity are intensified as we enter into a market-driven managed care delivery system. This essay patients who suffered from life-threatening ill- explores recent ethical and legal developments on several nesses, was done in five major teaching hospitals emerging issues: the decision making process; DNR orders; over a 4-year period. The initial findings, based brain death; withdrawal of treatment; physician assisted sui- on 2 years of observation to determine the major cide; and the constraints of managed care. problem areas in the care of the seriously ill patient, revealed what were thought to be glaring inadequa- cies in the care of these patients. The study then undertook a 2-year intervention involving highly trained nurse practitioners who acted as intermedi- aries between the patient or family and the physi- cian to determine if the better provision of data and improved communication would improve the quality of care. The results surprised the investiga- tors. Despite the rich resources available from the multimillion dollar funding by the Robert Wood Johnson foundation, the study found no significant change in physician behavior or patient treatment. The SUPPORT study looked at five specific out- comes: physician understanding of patient prefer- ences; incidence and time of documentation of do-not-resuscitate (DNR) orders; pain; time spent in an intensive care unit comatose or receiving me- chanical ventilation before death; and hospital re- source use. In their 2-year phase I observational study of 4,301 patients, the investigators found that 31% of patients interviewed preferred that CPR be withheld, but only 47% of their physicians accu- rately reported this preference. Nearly half (49%) of the patients who desired CPR be withheld did not have a written DNR order. Nearly one third of these patients died before discharge. Of those who died with a DNR order, 46% of those orders were written within 2 days of death. From the Theology Department, Boston College, Chestnut Hill, Among the deaths, the median number of days MA. spent in the ICU comatose or on mechanical ventila- Received Mar 25, 1997, and in revised form Jul 10. Accepted for tion was 8 and more than one third spent at least publication Jul 14, 1997. 10 days in an ICU; 46% of them were on mechanical Address correspondence to Dr John J. Paris, Walsh Professor of ventilation at least 3 days prior to demise. More Bioethics, Theology Department, Boston College, 140 Common- wealth Avenue, Chestnut Hill, MA 02167. unsettling to the investigators were the findings 298 Copyright q 1997 Blackwell Science, Inc.

Ethical and Legal Issues in Intensive Care

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Page 1: Ethical and Legal Issues in Intensive Care

Ethical and Legal Issues in Intensive Care

John J. Paris, SJ, PhD,J. Cameron Muir, MD, andFrank E. Reardon, JD

Paris JJ, Muir JC, Reardon FE. Ethical and legal issues in intensive The largest, most comprehensive, and best fundedcare. J Intensive Care Med 1997;12:298–309.

study ever undertaken on decision-making for criti-The findings of the SUPPORT study, the largest, most compre- cally ill patients, ‘‘The Study to Understand Progno-hensive and costly study ever undertaken on decision making sis and Preferences for Outcomes and Risks offor critically ill patients, revealed a wide ranging gap between Treatment,’’ commonly known as the SUPPORTpatient preferences and physician behavior with regard to

study, documents many of the ethical issues in in-treatment decisions for seriously ill patients. The ethicaltensive care [1]. The study, involving over 9,000issues raised by that disparity are intensified as we enter into

a market-driven managed care delivery system. This essay patients who suffered from life-threatening ill-explores recent ethical and legal developments on several nesses, was done in five major teaching hospitalsemerging issues: the decision making process; DNR orders; over a 4-year period. The initial findings, basedbrain death; withdrawal of treatment; physician assisted sui-

on 2 years of observation to determine the majorcide; and the constraints of managed care.problem areas in the care of the seriously ill patient,revealed what were thought to be glaring inadequa-cies in the care of these patients. The study thenundertook a 2-year intervention involving highlytrained nurse practitioners who acted as intermedi-aries between the patient or family and the physi-cian to determine if the better provision of dataand improved communication would improve thequality of care. The results surprised the investiga-tors. Despite the rich resources available from themultimillion dollar funding by the Robert WoodJohnson foundation, the study found no significantchange in physician behavior or patient treatment.

The SUPPORT study looked at five specific out-comes: physician understanding of patient prefer-ences; incidence and time of documentation ofdo-not-resuscitate (DNR) orders; pain; time spentin an intensive care unit comatose or receiving me-chanical ventilation before death; and hospital re-source use. In their 2-year phase I observationalstudy of 4,301 patients, the investigators found that31% of patients interviewed preferred that CPR bewithheld, but only 47% of their physicians accu-rately reported this preference. Nearly half (49%)of the patients who desired CPR be withheld didnot have a written DNR order. Nearly one third ofthese patients died before discharge. Of those whodied with a DNR order, 46% of those orders werewritten within 2 days of death.

From the Theology Department, Boston College, Chestnut Hill, Among the deaths, the median number of daysMA.

spent in the ICU comatose or on mechanical ventila-Received Mar 25, 1997, and in revised form Jul 10. Accepted for tion was 8 and more than one third spent at leastpublication Jul 14, 1997.

10 days in an ICU; 46% of them were on mechanicalAddress correspondence to Dr John J. Paris, Walsh Professor of

ventilation at least 3 days prior to demise. MoreBioethics, Theology Department, Boston College, 140 Common-wealth Avenue, Chestnut Hill, MA 02167. unsettling to the investigators were the findings

298 Copyright q 1997 Blackwell Science, Inc.

Page 2: Ethical and Legal Issues in Intensive Care

Paris et al: Ethical and Legal Issues in Intensive Care 299

with regard to pain; 22% of patients reported being suggests that the only effective constraint on sucha system may be economic: capitation and financialin moderate to severe pain at least half the time.

And surrogates indicated that half of all conscious risk to the providers for overutilization. Market-driven managed care is not indifferent to prognosticpatients who died in the hospital experienced mod-

erate to severe pain at least half the time during data, outcomes research, and articulated patientpreferences for limitation of treatment. Nor doestheir last 3 days of life.

The phase II intervention aimed to make it easier it tolerate those who ignore such cost-controllingmechanisms.to achieve what the investigators perceived to be

better decision-making for seriously ill patients by For Lo a third possibility is that patients to datehave not been given enough decision-making au-giving physicians reliable predictive information

and timely reports of patient and surrogate prefer- thority. The well-documented physician reluctanceto convey a poor prognosis may lead patients toences. In the words of the study’s authors: ‘‘The

intervention had no impact on any of these desig- an overly optimistic assessment of their status [6].Lo speculates that, if given explicit prognostic infor-nated targets.’’ These data call into question how

well physicians, particularly those functioning in mation, patients would more frequently declinelife-sustaining interventions. Such a shift, however,intensive care settings, take seriously and attempt

to honor patient preferences on treatment choices. would require a more open and honest level ofsustained discussion between patient and physicianThey also force us to ask what, if anything, will

reduce or preclude, what the investigators label then now occurs [7].Lo’s findings are supported by Hanson and col-‘‘undesirable days’’ for dying patients.

The conclusion reached by the investigators is leagues [8] review of the 16 published studies onthe effectiveness of expressed patient preferencesthat the physicians believed they were doing the

best they could in the situation. One factor to be on end of life care. Those studies, conducted from1990 to 1996, conclude as did the SUPPORT studyconsidered is that the treating physicians did not

wish to directly confront problems or face difficult that ‘‘despite success at eliciting and recording pa-tient preferences, none of these intervention studieschoices. This is not surprising. Such avoidance is

part of Dostoyevsky’s insight into human nature, showed a difference in use of life-sustaining treat-ment on other desirable outcomes.’’that despite our protests we truly do not want free-

dom or responsibility [2]. Responsibility compels us Perhaps, as Callahan [9] proposes, the problemis more deeply rooted and culturally bound thanto confront and make hard choices, choices Kassirer

observes, ‘‘no one wants to make’’ [3]. commentators and investigators presuppose. Theone category Callahan finds generally missing inDuring the 4-year span of the SUPPORT study

momentous changes were occurring in the world the inventory of possible explanations for the widedisparity between theory and practice in the careof health care: The Supreme Court’s Cruzan opinion

acknowledged the right of patients to decline any of the critically ill patient is the American stancetoward death itself. We view death not as a commonand all life-sustaining medical treatments; the

Patient-Self Determination Act of 1990, mandating fate, but as just another option.Whatever its limitations and failings, the SUP-that each patient be apprised of the right to exercise

treatment choices, was passed; the Clinton proposal PORT study has focused attention on as yet stillunresolved ethical and legal issues in the care offor health care reform was debated; and Dr. Kevor-

kian became the lightning rod for patients’ ultimate critically ill patients. We shall explore recent devel-opments on several of these problems: the decision-right to choose. Yet, as Moskowitz and Nelson [4]

note, ‘‘None of these phenomena seem to have making process, DNR orders, brain death,withdrawal of treatment, physician assisted suicide,any impact on the practice of medicine for very ill

people.’’ and the constraints of managed care.Lo [5] provides three suggestions to explain the

phenomena uncovered in the SUPPORT study. TheDecision-Making Processfirst marks the emerging clash in medical ethics

between patient autonomy and professional duty.Patients or families want ‘‘everything possible’’ even Although we have long since surpassed the era of

the paternalistic physician and the passive patientif the interventions are regarded by others as inap-propriately aggressive or ‘‘futile.’’ Second, the sys- [10], physicians, as the SUPPORT study demon-

strates, continue to function independently of thetem itself may be the problem. The structure,culture, and incentives in a third-party payment fee- preferences of critically ill patients. Whether, as

Teres observes, this is from an overly great faith infor-service system led to insatiable demands for,and unlimited access to, medical technology. Lo technology or from a fear of malpractice [11], or

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300 Journal of Intensive Care Medicine Vol 12 No 6 November–December 1997

simply reflects the fact that the parties in the emerged as ethical problems in health care delivery.A reflection on their resolution provides an insightdecision-making process bring different under-

standings and expectations of the highly complex into how we perceive ourselves as a people. Forexample, from the Johns Hopkins case [15] to theand nuanced issues in the ICU, has not been estab-

lished. As a recent survey by the Society of Critical Bloomington Baby Doe dispute, many believe thatparents should have the right to deny lifesavingCare Medicine on the attitudes of its members on

treatment decisions reveals, for many ‘‘the aim of corrective surgery to a Down syndrome infant be-cause a retarded child would prove a burden onpreserving life, or the principle of beneficence over-

rode the principle of respect for autonomy’’ [12]. the family [16,17]. Now, however, a strong consen-sus has emerged in our society that such an infantForty-four percent would admit a patient who was

in a persistent vegetative state to the ICU. When may not be denied the necessary surgery simplybecause of its handicap [18,19]. Likewise, thoughconfronted with the case of an incompetent individ-

ual with acute, reversible organ failure who had, parents may have a right to decline blood transfu-sions based on religious convictions, they have nothrough an advance directive, refused life-

sustaining treatments, 61% were inclined to provide right to impose those beliefs on their immatureminor children [20].intensive care.

Those findings are confirmed by Asch et al. [13], An example of the restriction on one’s right topositive claims would be the denial of a familywho report that of 879 critical care physicians sur-

veyed, 294 (34%) reported that they had declined request to have a rapidly deteriorating critically illpatient remain in or moved to the ICU to satisfyto withdraw mechanical ventilation at least once in

the preceding year despite having been asked to their demand that ‘‘everything possible be done’’[21–24]. Use of that facility must rest on the medicaldo so by a patient or surrogate. In most cases the

reason provided was the physician’s judgment that staff’s professional assessment of the usefulness ofthe ICU to the patient and the comparative meritthe patient had a ‘‘reasonable’’ chance to recover.

Those views clash with the current standard in both of others’ claims for that scarce resource [25]. Tohold otherwise would transform the intensivist fromethics and the law that patient preferences on treat-

ment decisions should prevail. a professional charged with making informed andsometimes difficult judgments into one who simplyDespite the continuing attitude among many crit-

ical care professionals that they know what is best strives to fulfill family demands no matter how mis-placed or misguided.for the patient, good medical decision making is

not unidimensional. At a minimum it must considerthree factors: the physician, the patient, and the

Responsibility for the Decisioncommunity. The physician must make the diagno-sis, provide the prognosis, and, after forming a pro-fessional judgment on the range of options, make a It is clear that judgments concerning burden and

benefit to the patient are value judgments, moralrecommendation. Given the recommendation, thepatient or proxy then addresses the subjective val- choices. They are judgments in which, all things

considered, the continuance of life is either calledues that will determine whether the proposal offersa proportionate benefit. Here the entire range of for or not worthwhile to the patient. Such judgments

are the onerous prerogative of the competent pa-factors, such as cost, burden, pain, anticipated out-come, dislocation, family structure, and personal tient or of those who are primarily responsible for

the welfare of the incompetent patient—the familyplans comes into play. The patient or the personacting on behalf of the patient must plumb these or other surrogate. When the surrogate exercises

this prerogative in a way that is questionably noand then choose.Although the combination of patient-family longer in the best interest of the patient, especially

by allowing the patient with a good prognosis tochoice is generally final, a third factor—society—must also be considered. With the shift in attitude go untreated, society has the duty to intervene.

That intervention can take many forms, such asfrom strong paternalism to the elevation of auton-omy into a near absolute, individuals sometimes legislation, criminal prosecution, or neglect hear-

ings. The purpose of such proceedings is to guaran-forget that their actions and decisions have implica-tions for and impact on others. Consequently, soci- tee that the primary decision maker acts in a manner

that should be able to sustain public scrutiny.ety for the protection of individuals and thecommon good may place constraints and limits, When there is a dispute between the physician

and the decision maker, the first recourse shouldboth positive and negative, on individual rights [14].Several examples of those constraints have not be the courts but the hospital ethics committee.

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Paris et al: Ethical and Legal Issues in Intensive Care 301

As the President’s Commission report ‘‘Deciding to brief case studies. That text could well join thePhysician’s Desk Reference as standard equipmentForego Life-Sustaining Treatment’’ [26] observed,

‘‘routine judicial oversight [of medical decision in every ICU. Interestingly, the best summary ofethical norms is found not in discursive philosophi-making] is neither necessary or appropriate.’’ The

remoteness from the clinical situation and the in- cal texts but in the major court opinions issuedsince Quinlan. Four of these, Superintendent ofability to keep pace with the ongoing fluctuations

in the patient’s condition, particularly in an inten- Belchertown State School v. Saikewicz [31], Barberv. Superior Court [32], In the matter of Claire Con-sive care setting, are strong arguments in support

of that thesis. The commission favors having a dis- roy [33], and Cruzan [34], illustrate the emergingconsensus of law and ethics on the appropriateputed decision in difficult cases reviewed by an

in-place, broadly based, multidisciplinary hospital care that is due an incompetent, terminally ill, orirreversibly comatose patient [35].bioethics committee, which would be familiar with

both the medical setting and community standards. The right of an ICU physician to make judgmentson the appropriate treatment of the incompetentThat consultative body, which would be charged

with establishing standards of treatment and issuing patient—even contrary to family demands—wasupheld in the recent Gilgunn case [36,37]. There aguidelines for the institution, would provide a

framework for impartial but sensitive review of hard Massachusetts jury found that Dr. William Dec, thedirector of the Massachusetts General Hospital ICU,choices [27–29]. It would also guarantee that the

interests of the patient were being considered with- and Dr. Edwin Cassem, the chair of the hospital’sethics committee, had not breached the standardout the formality and intensely adversarial character

of a court proceeding, or worse, the pervasive fear of care for—over the family’s protests—writing aDNR order and weaning the ventilator from a 71-and distrust generated by anonymous tipsters in

the ICU. year-old comatose woman in multisystem failure.The jury found that even though the patient wouldAny decision, of course, would be subject to judi-

cial scrutiny as a last resort. Such an approach en- have wanted an attempt at resuscitation and ventila-tory support if again needed, such actions wouldsures that the decision maker has received the most

reliable information available, that the decision is be futile and thus unwarranted. An appeal in thatcase is now pending.within the range of acceptable options, and that

those uncomfortable with it have had an opportu- The decision to withhold or withdraw aggressivemedical interventions without patient consent ornity to discuss their reservations with a concerned

and disinterested representative of the public. It over patient or proxy objection is not unprece-dented. Asch and colleagues report that in theiralso insulates the agonizing and often tragic choices

from the glare of publicity, the distortion of public survey of 879 critical care specialist, 203 (23%) statethat they have withheld or withdrawn life-posturing, and the costly and tangled involvement

of court proceedings. sustaining treatment unilaterally because theyjudged further intervention would be ineffective orfutile [12]. For 23 (3%) of the physicians this was

Substantive Guidelines done over the explicit objection of the patient orfamily.

As we have previously cautioned, however, phy-The procedural aspects of good decision makingassure that patient autonomy, physician responsi- sicians, when withholding or withdrawing life-

sustaining treatment over the patient or family’sbility, and societal values are considered. They donot produce the decision; they do not guarantee its objections should not act unilaterally [38,39]. Nor

should they impose their personal values on thecharacter. Further, the range of ethically acceptableoptions, the complexity of individual cases, and patient. All such decisions should be made in con-

sultation with specialists, be supported by data fromthe variable situation of institutions and specificpatients precludes prepackaged solutions to ethical the literature, and have the approval of an ethics

committee. If that process does not resolve the con-dilemmas.Nonetheless, there are some agreed-upon norms flict, the physician should offer the family the op-

portunity of an outside opinion and transfer of theand guidelines that are helpful in resolving difficultethical questions. The most practical and readily patient. If no physician can be found who is willing

to care for the patient as the family requests, theavailable source for the clinician is Jonsen’s ClinicalEthics [30], a superb short text in which an ethicist, present treating physician has no further obligation

to follow the family’s demands for aggressive inter-a physician, and an attorney set out some of themore common principles and illustrate them with ventions.

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302 Journal of Intensive Care Medicine Vol 12 No 6 November–December 1997

under this article, the physician shall make a reasonableSupport for the professional determination ofeffort to transfer the patient to another hospital.medical standards was first addressed in the land-

mark 1978 opinion of the Massachusetts Court ofAppeals in In re Dinnerstein [40]. There the court

Baby Kheld that the ruling of the Supreme Judicial Courtin Saikewicz requiring prior judicial approval forwithdrawal of life-sustaining medical treatment The well-known case of Baby K in which a federal

district court in Virginia ruled that emergency roomfrom an incompetent patient could not have beenintended to ‘‘require attempts to resuscitate dying physicians had to stabilize an anencephalic infant

who presented with apnea despite the physician’spatients . . . without the exercise of medical judg-ment, even when that course of action could aptly belief such interventions were contrary to profes-

sional standards did not directly address the issuebe characterized as a pointless, even cruel, prolon-gation of the act of dying.’’ of physicians being required to act contrary to con-

science. Rather it was based on a technical readingIn explaining its position the Dinnerstein courtdistinguished ‘‘life-saving or life-prolonging treat- of the federal Emergency Medical Treatment and

Active Labor Act (EMTALA) [43], requiring emer-ment’’ from ‘‘a mere suspension of the act of dying.’’In the court’s words, ‘‘Prolonging of life does not gency department staff to stabilize patients before

they may be transferred. The Fourth Circuit Courtmean a mere suspension of the act of dying, butcontemplates, at the very least, a remission of symp- of Appeals, which upheld the ruling of the district

court, acknowledged ‘‘the dilemma facing physi-toms enabling a return towards a normal, function-ing, integrated existence.’’ cians who are requested to provide treatment they

consider morally and ethically inappropriate.’’ ItThough Dinnerstein was written to uphold theright of a family to request a DNR order for an was, however, unwilling to resolve the policy con-

cerns occasioned by such situations. Instead, it toldincompetent patient, the language of the courtmakes it clear that the issue of attempting resuscita- the hospital to direct its concerns to Congress.

The ruling in Baby K is a narrow one. It requirestion ‘‘is a question peculiarly within the competenceof the medical profession of what measures are that ‘‘physicians in emergency departments . . . pro-

vide assistance, ventilatory and otherwise, to anen-appropriate to ease the imminent passing of anirreversibly, terminally ill patient.’’ cephalic infants who need it to survive.’’ As Annas

notes in a commentary on the case, this is not aThat perspective on the exercise of professionaljudgment by the physician was reiterated in the scenario that is likely to arise again [44]. Further, the

sweep of the ruling and the binding of physicians toSupreme Judicial Court’s opinion in Brophy v. NewEngland Sinai Hospital [41], when that court, in its demands is limited to the jurisdiction of the

Fourth Circuit. In all other areas physicians are freeupholding the right of Paul Brophy to be free ofunwanted, life-sustaining medical treatment, ruled to and ought to continue to make medical choices

as they always have been made—on the basis ofthat individual physicians could not be required toremove or clamp Brophy’s feeding tube if such jointly agreed upon decisions—from a set of treat-

ment options proposed by a qualified physicianaction would be ‘‘contrary to their view of theirethical duty toward their patient.’’ In the course of and selected according to the patient’s values [45].

Rather than pursue the elusive quest forits opinion, the Supreme Judicial Court also ruledthat a hospital and its staff ‘‘should not be compelled agreement on substantive guidelines on what con-

stitutes ‘‘futile’’ treatment [46], the Houston Plan. . . [to act] contrary to [their] moral and ethicalprinciples, when such principles are recognized [47] and Colorado’s GUIDe [48] program propose

a process to resolve treatment disputes. In openand accepted within a significant segment of themedical profession and the hospital community.’’ sessions all parties are to be given a full opportu-

nity to present their views and express their values.Similar support for reliance on physicians’ clinicaljudgment is found in Virginia’s Health Care Deci- If disagreement still persists, the patient or proxy

is given an opportunity for transfer. The advantagesion Act [42]. The relevant section reads:of a process-based community-wide multi-institutional collaborative policy is that it provides

Nothing in this article shall be construed to require aa mechanism for balancing professional, institu-

physician to prescribe or render medical treatment to ational, and social values against the competingpatient that the physician determines to be medically orclaim of patient autonomy.ethically inappropriate. However, in such a case, if the

It is thus not the personal predilection of an indi-physician’s determination is contrary to the terms of anvidual provider that overrules the patient or proxyadvanced directive of a qualified patient or the treatment

decision of a person designated to make the decision demands; it is, rather, the collective judgment of

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Paris et al: Ethical and Legal Issues in Intensive Care 303

the community on appropriate use of medical tech- was to be attempted on all patients who arrestedregardless of their medical status or prognosis. Innology that prevails. What is involved in these dis-

putes is after all a question of values. The question is its report, the President’s Commission noted that,among the general hospital population where virtu-not whether but which value judgments physicians

may use in deciding to honor patient demands. The ally all deaths were attended by resuscitation ef-forts, only 3% of the attempts were successful.question, as Tomlinson and Brody [49] note, signals

a turn away from individual toward the social con- Further, 1 in 20 patients who survived resuscitationsustained severe brain damage, and about 1 in 4 hadceptions of reasonableness and worthwhileness of

the proposed procedure. some serious and permanent injury. Consequently,the commission concluded that the reflex resuscita-tion efforts presently attempted in hospitals are fre-quently a misguided adventure that injures theDo-Not-Resuscitate Orderspatient and violates personal control over his orher life.Despite the strong agreement in the ethical litera-

In response the commission called for a reevalua-ture and judicial rulings that patient preferences totion of resuscitation practices by hospitals, healthforgo aggressive medical interventions should becare providers, and especially treatment areas (e.g.,respected, the SUPPORT study reveals that physi-ICUs and cardiac care units) where many patientscians caring for critically ill patients are reluctant toare at risk for cardiac arrest and where CPR fre-honor such requests. This is particularly true withquently is attempted automatically without appro-regard to DNR orders. The study found that whilepriate prior deliberation. Prior deliberation in suchone third of the patients preferred that cardiopul-cases would (1) ensure that the patient’s rightsmonary resuscitation be withheld, only 47% of theand decisions regarding self-determination be re-physicians accurately reported that preference andspected, (2) guarantee that medical interventionsnearly half (49%) of those patients did not have aserve the patient’s best interest, (3) allow adequatewritten DNR order.evaluation of resource allocation and equity consid-As the history of modern resuscitation indicates,erations, and (4) reduce nurse-physician-familydevelopments in cardiopulmonary resuscitationmisunderstandings on resuscitation practices. Tohave given everyone the ability to challenge deathprotect both the patient and caregivers, hospital[50]. The question is when and where is that chal-policies should require appropriate communicationlenge appropriate? Policies and guidelines to an-with the patient (or the family) about the resuscita-swer that query were first provided in the landmarktion decision. If a DNR order is deemed appropriate,1974 American Heart Association Report on Stand-that order should be written in the patient’s chart,ards for Cardiopulmonary Resuscitation, which setalong with the rationale and supporting documen-standards and initiated a massive and highly effec-tation.tive CPR training program [51]. The report declared:

Tomlinson and Brody [52] distinguish three ratio-nales for DNR orders: no medical benefit; poorThe purpose of cardiopulmonary resuscitation is the pre-quality of life after CPR; and poor quality of lifevention of sudden, unexpected death. Cardiopulmonarybefore CPR. They adopt Blackhall’s [53] positionresuscitation is not indicated in certain situations, suchthat ‘‘Physicians have no obligation to provide, andas in cases of terminal irreversible illness where death ispatients and families no right to demand, medicalnot unexpected or where prolonged cardiac arrest dic-

tates the futility of resuscitation efforts. Resuscitation in treatment that is of no demonstrable benefit.’’ Inthese circumstances may represent a positive violation such cases, they too believe the patient or family’sof an individual’s right to die with dignity. desire for CPR is irrelevant. The decision is entirely

within the physician’s technical expertise. The phy-That thoughtful and carefully formulated state- sician’s duty is to communicate with the family and

explain that the patient’s physical condition is suchment has been all but forgotten as paramedics,nurses, and physicians trained in the new lifesaving that no intervention will reverse the dying process

and hence none will be attempted. The most physi-techniques respond to ‘‘code blues’’ with ‘‘crashcarts’’ and portable defibrillators like firefighters an- cians should do when CPR is believed futile is to

communicate that information to the patient or fam-swering an alarm. In the words of Dr. Mitchell Rab-kin, president of Boston’s Beth Israel Hospital, ily so that they will understand the decision the

physician has made.‘‘When the bell rings, you run!’’That response pattern soon led to the policy com- It is only when the patient declines CPR because

of present or anticipated quality of life factors thatmon in most hospitals that in the absence of awritten DNR order cardiopulmonary resuscitation the patient’s values or desires determine the deci-

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304 Journal of Intensive Care Medicine Vol 12 No 6 November–December 1997

sion. If the present or anticipated quality of life of situation, they must stand idly by while their patientdies. Further, as Peterson [58] observes from thethe patient is such that CPR is not desired by the

patient, then the patient’s values or desires are of surgeon’s perspective, ‘‘Resuscitation and mechani-cal ventilation take on an entirely new meaning inimport. In such cases it is personal values, not physi-

cian preferences, that prevail. the context of an operation.’’ Most arrests in thatsetting result not from the disease process, but fromA problem that frequently arises in major hospital

settings is the elderly dying patient who has out- the administration of anesthetics or from surgicalevents [59].lived all family and friends. Rather than unreflec-

tively resuscitating all such patients or overusing These events, as Franklin and Rothenberg [60]note, ‘‘are often, but not always, reversible.’’ Theythe complex and somewhat costly role of legal

guardian, decisions against resuscitation might argue that since hypotension and/or hypoventila-tion may not be a sign of incipient death, ‘‘it maycontinue to be made as they customarily have

been—by the attending physician with the concur- not be the patient’s intent to have intubation, vaso-pressors, and other maneuvers withheld in this situ-rence of a disinterested physician, staff consensus,

or an institutionally designated patient advocate. ation.’’ Their response, as is that of Peterson, is tosuspend the DNR order during surgery. The over-These decisions are well within the scope of com-

mon medical practice and should not be elevated whelming majority (81%) of accredited residencyprograms in anesthesiology that replied to Franklinto the role of moral dilemma or judicial problem.

Decisions that are more complex or uncertain and Rothenberg’s questionnaire on that issue agreewith the policy of automatically suspending DNRmight, of course, demand more formal institutional

review or legal guardianship. orders during anesthesia and surgery. While sucha policy might minimize uncertainty regarding theIn fact, with regard to these questions the only

court ever to address itself to the issue ruled that initiation of life support in the OR, the questionremains, does it always serve the best interest of‘‘The question (DNR) is not one for judicial deci-

sion, but one for the attending physician, in keeping the patient? Walker gives two reasons why patientsmight want to keep their DNR orders during sur-with the highest traditions of his profession.’’ It is,

in the court’s words, ‘‘a question peculiarly within gery. The first is to avoid the risk of surviving resus-citation only to be left in a worse condition. Thethe competence of the medical profession of what

measures are appropriate to ease the imminent second is the prospect of death under anesthesiaas a peaceful exit. From the dying patient’s perspec-passing of an irreversibly, terminally ill patient in

light of the patient’s history and condition and the tive, if death occurs while under anesthesia, thenso much the better.wishes of her family’’ [54].

Two persuasive arguments are presented as towhy surgeons and anesthesiologists, despite their

Do-Not-Resuscitate Orders in the interest in avoiding operative deaths, should acceptthe patient’s willingness to undergo the risk of intra-Operating Roomoperative cardiac arrest and death. One is that oth-erwise the patient’s pain and suffering are notOne remaining issue involving DNR policy is the

question of the continuance of a DNR order for alleviated, and the second is that the alternative isto force the patient to undergo morally optionalpatients who go to the operating room for surgery

[55]. The question arises most commonly when a invasive procedures. Such an action not only vio-lates the patient’s autonomy, it forces the patientterminally ill patient wants to forego resuscitation

and yet needs amelioration or palliation of symp- to accept unwanted resuscitation as the price ofpalliation. While some patients might willingly ac-toms such as insertion of intravenous catheters, a

feeding gastrostomy, a tracheotomy, wound de- cede to temporary suspension of a DNR order andothers would be willing to risk a few days on abridement, or resection. The problem as Walker

[56] notes is that deaths in the operating room are ventilator or even the possibility of being reducedto a comatose state, there are others who wouldgenerally perceived as a bad outcome that invites

professional scrutiny, criticism, and even censure. want the assurance that should they arrest no resus-citation will be attempted.They also raise the ever-lurking specter of malprac-

tice. For these reasons physicians, though willing The American College of Surgeons (ACS) ad-dressed the problem in an even more forthrightto accept ‘‘natural’’ death, ar loath to allow a death

for which they feel personally responsible [57]. way. After reviewing the issue of surgical patientswith DNR orders, the college [61] concluded: ‘‘Poli-To honor a DNR order in the OR would mean

that the surgeons or anesthesiologists not only must cies that lead either to the automatic enforcementof all DNR orders and requests or to disregarding orrestrict their response to a potentially reversible

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Paris et al: Ethical and Legal Issues in Intensive Care 305

automatic cancellation of such orders and requests the egregious situation in the recent case of TheresaAnn Hamilton in which physicians ventilated theduring the operation and recovery period may

not sufficiently address a patient’s right to self- corpse of a brain dead child for months to satisfythe parents’ hopes that their daughter would re-determination.’’ The college acknowledged that a

policy of automatically canceling the DNR order cover [69]. To obviate such a situation physiciansshould avoid confusing and ambiguous languagefails to provide appropriate patient participation in

decision making. It also recognized that woodenly such as ‘‘brain dead’’ or references to removal of‘‘life-sustaining machinery.’’ They should also re-following a written directive without discussion and

clarification may lead to inappropriate periopera- frain from giving the family a choice on the decisionto withdraw the machinery that is profusing a deadtive and anesthetic management.

The ACS adopted ‘‘required reconsideration’’ as body. As the landmark ‘‘Guidelines for the Determi-nation of Death’’ [70] made clear, once the physicianthe best approach for such situations. This policy

guarantees that all the parties involved be appraised has made a well-informed determination of braindeath, the patient is dead. Dead is dead—and noof the procedures and the potential life-threatening

problems during the perioperative period. If, after softening of the term will alter that reality. Ambigu-ous language, though, can block or delay timelythese are understood, the patient elects to retain

the DNR order, that choice, the college concludes, withdrawal of medical interventions.must be honored.

Withholding and Withdrawal of MedicalBrain Death Interventions

Once it is agreed that a particular medical interven-Although the theoretical debate over the value andcorrectness of the definition of brain death contin- tion is not appropriate for a patient, either because

the patient or proxy refuses it or because it is notues unabated in the literature [62–64], as a practicalmatter brain death is the one area of medicine in effective in reversing or ameliorating a disease proc-

ess, that intervention may be withheld or with-which in practice as well as the law there is a con-sensus that unilateral refusal of continued treatment drawn. There is now universal agreement in both

the ethical and legal literature that the same justifica-is appropriate. With the exception of New Jerseywhich has a statutory provision defining an excep- tion that applies to the withholding of a treatment

governs its withdrawal. In fact, there is an evention for those who have ‘‘well established religiousobjections’’ to the determination of death by brain greater warrant for instituting a therapy to deter-

mine if it might work and then withdrawing it if itcriteria [65], every other jurisdiction recognizes themedically determined cessation of electrical activity fails than never instituting it: the patient has the

benefit of a trial course of the therapy.in the whole brain, including the brain stem, asdeath. When such a determination is made, the Nonetheless, as Weir [71] observes, the feeling

mistakenly still persists among some caregivers thatphysician should inform the family that the patienthas died and should inquire about the possibility the withdrawing of life-sustaining treatment is mor-

ally more significant and certainly more legally seri-of organ donation [66]. If donation is declined, thephysician should then inform—not ask—the family ous than withholding treatment. Several reasons

contribute to this misunderstanding. It is psycholog-that all medical interventions will be withdrawn.Wijdicks [67] suggests the following approach: The ically easier not to start than to stop. Further, with-

drawing a treatment once instituted gives a sensefamily should be told in unequivocal terms that thepatient has died and that the mechanical ventilation that the physician’s action, rather than the underly-

ing illness, ‘‘caused’’ the death of the patient. Thereand medications that were being administered topreserve the organs in the event of permission for is also the belief that the physician is duty bound

to do everything possible to sustain life. And theredonation will be withdrawn. This is to be done afterallowing the family time to adjust to the reality of is the lingering belief by some that the law prohibits

the removal of life-sustaining technology. Fromthe death of a family member and, if desired, theopportunity for a brief visitation. That approach Quinlan [72] to Cruzan [73] the U.S. Supreme Court

and every state supreme court that has addressedadheres to the Society of Critical Care Medicine’s[68] consensus statement that, ‘‘It is inappropriate the issue has concurred with the finding of the

President’s Commission report ‘‘Deciding to Foregoin this situation to seek agreement of the family orthe surrogate to the withdrawal of medical Life-Sustaining Treatment’’ [26] that there is no

moral, ethical, or legal difference between with-support.’’Failure to follow that recommendation resulted in holding and withdrawing medical interventions.

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306 Journal of Intensive Care Medicine Vol 12 No 6 November–December 1997

The moral issue facing critical care physicians Patients in intensive care settings are not amongthose desiring to end their life. Rather they are seek-involved in the withdrawal of medical interventions

is to assure the patient and family that the with- ing aggressive measures to reverse life-threateningsituations. Secondly, the autonomy of the sedateddrawal of treatment will not produce suffering for

the patient [74]. This, as Civetta [75] notes, is of critically ill patient may be so compromised or di-minished as to preclude the voluntariness necessaryparticular concern when ventilatory support is with-

drawn. If done too rapidly or without close atten- for PAS. Further, the critically ill ICU patient’s condi-tion is generally such that the withholding or with-tion, air hunger or dyspnea may result in gagging,

gasping, and struggle in the patient. Neither the drawal of life-sustaining interventions will besufficient to result in their demise. Whatever itspatient—nor family or caregivers—should be sub-

jected to such insensitive circumstances. To prevent potential application in other settings, PAS is anti-thetical to the purpose and goal of intensive carethis situation physicians should take care to pre-

medicate patients with a sedative, generally medicine. It is not now and ought not be an aspectof such care.morphine, to alleviate dyspnea and pain and a ben-

zodiazepine for anxiety. Since the goal of thesemedications is symptom relief, not death, theyshould be titrated to the intended effect.

Managed CareMost authors recommend continuous infusion ofmorphine. Wilson et al. [76] found that 11.2 `/12.0 mg/hr of morphine sufficed. Faber-Langendon’s America is now entering a new era in medicine:

managed care [79]. Under it the health care delivery[77] study notes that patient’s required an increasein baseline morphine from an average dose of 4 mg/ system will operate with fixed budgets, capitation,

and financial risk to providers [80]. Those institu-hr to 22 mg/hr during terminal wean. Both studiesreport that patients may require as much as 50 to tions that miscalculate costs or exceed budgets by

providing marginally beneficial, excessively expen-80 mg/hr of morphine to control symptoms, espe-cially if they have been on morphine for a sustained sive treatments will prove noncompetitive in a

price-sensitive market.period of time.Though it might appear beneficial to paralyze The threat this new system poses to the tradi-

tional way of dealing with patients in an intensivethe patient prior to extubation or weaning, mostcommentators agree that it is unethical to utilize care setting is real [81]. The autonomy-driven domi-

nation of the past three decades of medicine hasneuromuscular blocking agents at the time of dis-continuing a ventilator [78]. In addition to blurring led to a situation in which the patient or proxy could

not only refuse an unwanted medical treatment,the threshold between allowing the patient to dieand actively causing the patient’s death, these but could demand, and would be provided, any

potentially life-prolonging procedure available. Itagents mask potential patient pain and anxiety.They are not necessary to assure absence of pain is an environment not of community-shared values

but of subjectively chosen goals. Translated intoand ought not be used for that purpose.practice, that consumer-based model of medicineis one in which the patient alone determines the

Physician Assisted Suicide worthwhileness of any potential life-prolongingtreatment [82].

The now well-known cases of Baby L [83], Wan-Although the legal and moral issues involved inphysician assisted suicide (PAS) have occasioned glie [84], and Baby K [85] pushed the outer limits

of the old system spinning out of control. In thosewidespread and deeply divided debate, we do notbelieve that PAS is relevant in the ICU setting. The cases families demanded and were provided years

of aggressive intensive care treatment despitefocus of high tech, labor intensive care is repair ofinjury or reversal of disease; it is not patient demise physicians’ objections that the care was not ‘‘appro-

priate.’’ These were patients who were, respec-or death. When death does occur in the ICU, it isnot that it is sought, but that the patient’s condition tively, a blind, deaf, neurologically devastated

23-month-old quadriplegic infant conscious only ofhas overwhelmed the physician’s ability to respondin an effective way. Physician assisted suicide, on pain, whose lifetime medical costs are projected to

be $12 million; an 87-year-old woman who spentthe other hand, is the act of a physician providingthe means, either through a prescription or instruc- 18 months in the ICU in a ventilator-dependent

persistent vegetative condition at a cost of $800,000;tion, for the patient to take his or her life. Thedeath is thus both desired and brought about by and an anencephalic infant who, at the mother’s

request, was resuscitated and maintained by aggres-the patient.

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Paris et al: Ethical and Legal Issues in Intensive Care 307

sive medical measures for 2 1/2 years. The cost for is bad medicine—not simply because it has abso-lutely no payoff or hurts the patient—but also be-care in her first year of life alone exceeded $510,000.

This approach to medicine, which adheres to cause the costs are not justified by minor expectedbenefits.’’ If that does not happen, he wrote,Levinsky’s [86] exhortation that physicians are to

serve single-mindedly as the patient’s advocate ‘‘sooner or later the United States will move towarda system of third-party controls.’’‘‘without regard to costs or other social obligations,’’

resulted in uncontrollable costs. The ‘‘single mas- Thurow’s hoped-for social consensus did nothappen. Just the opposite occurred: we had ater’’ view of medicine, to use Luce’s term [87], in

which if there is a disagreement between the physi- decade-long emphasis on autonomy. The unwill-ingness to compromise that principle—even if thecian and the patient over the efficacy of a treatment,

the patient’s view necessarily prevailed, lead, as result at times produced strange, bizarre, or absurdresults—culminated in the case of Baby K. TheCallahan [88] notes, to a cultural dilemma: There

is no room for professional standards and, if left highly individualistic notion of autonomy found inthat case—which gives the patient or surrogate theunchecked, will lead to bankruptcy.

The attempt to avoid that adverse economic con- power to assert his or her own values, howevermuch they may fly in the face of medical judg-sequence has led to a rapid shift in our health care

delivery system. Today major hospitals are advertis- ment—assumes that we ought not, nor perhapseven could not, reach some common social judg-ing not only for medical personnel but, for ‘‘Senior

Executive skilled in managed care strategy.’’ That ment about the moral validity of such choices.Given the inability to formulate publicly agreed-toskill, as Iglehart [89] informs us, is ‘‘control of the

‘medical loss ratio’—that is, the cost of medical ser- constraints on individual choices, Thurow’s defaultposition, the marketplace, has come into play. Nowvices as a percentage of the revenue from premi-

ums.’’ Although that relationship might seem a third party, the insurer, or more specifically, thepurchaser of the insurance coverage, not the patientremote to the ICU, it is the key to Wall Street invest-

ors’ assessment of for-profit managed care plans or physician, is determining what is to be provided.The mechanism employed to guarantee con-and is, he warns, ‘‘central to the problem’’ that faces

medicine today. straint within the system is, by definition, a func-tion of the market: financial incentives. TheJust as individual patients may assess and evalu-

ate the cost, pain, and burden of a proposed treat- financial incentives—capitation, salary ‘‘with-holds,’’ and bonus arrangements—are not acciden-ment in determining whether it is worth doing,

managed care providers in a competitive market tal; they are designed precisely to place thephysician at financial risk for providing marginalwill make similar determinations with regard to

treatment possibilities for their enrollees. To stay or superfluous treatments. The ethical question atstake with regard to these ‘‘financial incentives’’ issolvent a plan must not only provide high-quality

care, it must, by careful use of its resources, control not whether these incentives present a potentialconflict of interest (all financial incentives, includ-the medical loss ratio. That, as Rogers et al. [90]

conclude, means practice guidelines must be used ing fee-for-service, involve that danger), butwhether they serve a public good. Do they help‘‘to eliminate unnecessary tests and risky proce-

dures.’’ Under such guidelines how would partici- control spiraling costs? Do they reign in marginalor useless interventions? Are they effective in guar-pants in a managed care plan—intensivists,

nephrologists, and surgeons, as well as plan mem- anteeing a more equitable access to common re-sources? These are questions of institutional asbers—assess and evaluate the acceptability of pro-

viding 2 years of intensive care for an anencephalic opposed to individual claims about equity and fair-ness. They require a concern not only for a particu-infant, or 18 months in the ICU for an 87-year-old

patient in PVS, or providing $12 million worth of lar patient but for the well being of all those affectedby the plan: patients, physicians, payers, providers,aggressive medical care for an infant whose only

conscious activity is a response to pain? and most particularly all the other participants inthe plan.In a perceptive essay on medicine and economics

written in 1984 Lester Thurow, an economist at theMassachusetts Institute of Technology, predicted

Conclusionthat Americans would either have to learn to say‘‘no’’ to marginally beneficial and very high costmedical treatments or they would revert to the mar- What is called for in this new era of health care

delivery is a decided shift in how decisions areketplace as the mechanism to make that choice forthem [91]. As an egalitarian he had hoped that soci- made. The emphasis can no longer be exclusively

on patient autonomy or even physician responseety would ‘‘help physicians decide when medicine

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308 Journal of Intensive Care Medicine Vol 12 No 6 November–December 1997

surgery: a national survey of pediatricians and pediatric sur-to the well-being of individual patients—geons. Pediatrics 1977;60:588–599‘‘indifferent to cost or other social considerations’’

17. Todres ID, Krane D, Howell MC, et al. Pediatricians’ attitudes[92]. Clancy and Brody [93] are on target when they affecting decision-making in defective newborns. Pediatricsstate, ‘‘The most fair and defensible principle would 1977;60:197–201

18. Office of the Secretary, Department of Health and Humanbe to try to match treatments with those patientsServices. Nondiscrimination on the basis of handicap: proce-most likely to benefit and to begin to discouragedures and guidelines relating to health care for handicappedor withhold expensive treatments when patientsinfants. Fed Reg 1984;49:1622

whose chance of benefit is very slim or nearly zero 19. Kopelman LM, Irons TG, Kopelman AE. Neonatologistscan be identified’’: If even further restrictions on judge the ‘‘Baby Doe’’ regulations. N Engl J Med 1988;318:

677–683services are required to provide affordable health20. In re E.G., a minor. 113 Ill.2d 98; 549 N.E. 2d 322 (1989)care coverage, it is hoped that outcome data and21. Callahan D. Allocating health resources. Hast Center Reppractice guidelines [94–98], as well as membership

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