The Journal of Pediatrics
Volume 155, Issue 1 , Pages 12-15, July 2009

Hypoplastic Left Heart Syndrome: A Paradigm Case for Examining Conscientious Objection in Pediatric Practice

  • Lainie Friedman Ross, MD, PhD

      Affiliations

    • Departments of Medicine, Pediatrics, Surgery and the College, MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, IL
    • Corresponding Author InformationReprint requests: Lainie Friedman Ross, MD, PhD, University of Chicago, 5841 S Maryland Ave, MC 6082, Chicago IL 60637.
    • ,
  • Joel Frader, MD, MA

      Affiliations

    • Department of Pediatrics and Program in Medical Humanities and Bioethics, Northwestern University's Feinberg School of Medicine, Evanston, IL
    • General Academic Medicine, Children's Memorial Hospital, Chicago, IL

Received 29 October 2008; received in revised form 27 January 2009; accepted 3 March 2009.

Article Outline

 

The debate about the degree to which a physician's “conscientious objection” to requested care should be honored has tended to focus on 2 areas of medical practice: reproductive health care, especially the rights of women to information about contraception and abortion, and end-of-life care, especially practices that hasten death such as voluntary euthanasia, terminal sedation, and physician assisted suicide. The consequences of conscientious objection take on greater salience in the end-of-life care debate when the focus shifts from practices that hasten death to the examination of policies and practices about informing and offering palliative care as an alternative option to the provision of aggressive life-prolonging measures. Three articles published in Archives of Pediatrics and Adolescent Medicine in September 2008 use the example of infants born with hypoplastic left heart syndrome (HLHS) to examine the obligations physicians have to inform parents about the option for forgoing life-prolonging surgery.1, 2, 3

HLHS is a cyanotic congenital heart defect that results in death when untreated. In 2008, surgeons perform 1 of 2 surgical procedures for HLHS. One involves staged reconstruction and is known as the Norwood sequence of procedures; the other is heart transplantation. In earlier years, both surgical techniques had high morbidity and mortality rates, but postoperative survival rates have improved substantially.4, 5 Despite the improvement, Kon argues for the reasonableness of comfort care as a third treatment option, an option that he notes a substantial number of physicians would recommend to their patients6 and would choose for their own children.7 Other health care providers also express the preference for palliative care.8 Kon argues that recent improvements in surgical outcomes do not matter; what counts is whether treatment serves a particular child's best interest.1 He concludes that reasonable parents may select palliative care and states that this decision should be respected. Wernofsky, however, compares outcomes for HLHS with outcomes for other congenital heart defects in which cardiologists and surgeons see surgery as simply a matter of course, and no one offers palliative care.2 He argues that life-extending surgery constitutes the best option for all children with such “correctible” anatomic defects and that it is inappropriate to offer palliative care.

The 2 articles raise 2 important issues: 1) who should decide what information a physician must provide to families, and 2) who should determine a child's best interest. Feudtner's commentary examines these questions and helps to clarify the wider debate about what rights physicians do and ought to have for conscientious objection to providing information and referrals.3

Feudtner points to differences among a physician's obligation to inform, to recommend, and to offer palliative care for HLHS. He breaks the decision making process into 5 steps: 1) detect and assess; 2) inform; 3) recommend; 4) offer; and 5) deliberate and choose.3 Feudtner states that although the law often determines what to include in step 2, by way of a professional practice standard, he and many ethicists would argue that step 2 should depend on a “reasonable person standard.” This distinction leads to the wider debate about the role of physicians' personal moral objections to various medical interventions. Feudtner asserts that physicians do not and should not determine what a “reasonable person” would want to know. Rather, the reasonable person standard states that an option is “reasonable” when some minimum percentage of the lay community (say 5%) assert that they would want this information. Feudtner distinguishes between recommending (what a physician believes is best) and offering (describing all therapeutic options). Feudtner asserts that physicians may describe or recommend a treatment that neither the clinician nor the clinician's hospital will offer or implement. Reasons for not offering may include lack of clinical expertise or objections of conscience. In either case, Feudtner avows a moral obligation to inform and a need for clinicians to rise above their own beliefs despite finding some options personally disagreeable or unethical.3

Does refusal of surgery for HLHS remain a “reasonable” option in 2008? Kon and Feudtner claim yes and therefore argue that parents need to be informed1, 3; Wernofsky claims no and therefore does not believe that a parent needs to know about non-surgical options.2 Although Kon believes in offering palliative care to parents of babies with HLHS, Feudtner hesitates. Feudtner's reasonable person standard requires a periodic re-evaluation of whether refusal of surgery for HLHS in 2008 can be construed as “reasonable.” Although Feudtner argues to respect parental refusals of treatment for serious conditions with clearly poor prognoses, he emphasizes that outcomes are moving targets: “What is appropriate today must be revisited tomorrow.”3

Is the reasonable person standard appropriate in pediatric decision-making? Traditionally, pediatricians have used the “best interest” standard. Kopelman argues that “when we consider how this standard ('best interest') is used to solve practical problems…it does not require what is ideal, but what is reasonable.”9 Similarly, Buchanan and Brock argue that the child's best interest is “a regulative ideal, not a strict and literal requirement.”10 Ross also rejects the best interest standard for one that permits wide parental discretion unless their decisions are abusive or neglectful.11 That is, the main theories of decision-making in pediatrics do not require parents to choose only an elusive preferred option, just a reasonable one. Data published in 2008 from centers in Australia and England have comparable surgical outcomes to those reported for HLHS in the United States, and yet Australian and British programs still counsel parents about the availability of comfort care, although they recommend surgery.12, 13, 14 This suggests that palliative care remains a reasonable option in countries that have socioeconomic, medical, and political institutions similar to those in the United States.

Although surgical repair of HLHS has a lower mortality rate now than when the debate began, survival, in and of itself, without a thorough appreciation of neurodevelopmental outcomes and quality of life, does not establish only surgery as fostering the best interests of children with HLHS. Deciding whether palliative care constitutes a reasonable option for HLHS requires balancing of benefits and burdens of the alternative interventions. Many infants with HLHS have genetic disorders, often unrecognized in the preoperative period, that have associated abnormalities, including physical and psychomotor deficits.15 The expected outcome for children with HLHS without genetic disorders also involves a significant risk of neurocognitive disabilities.16, 17, 18 HLHS surgery is also associated with persistent need for additional medical care.18, 19 Neonatal heart transplantation for HLHS usually requires lifelong immunosuppression with all its attendant risks (growth retardation, malignancy, and serious infections). Staged surgical reconstruction, like other major cardiac surgeries, has been associated with intractable epilepsy.20, 21 Infant survivors of both procedures may need heart transplantation (or re-transplantation) in the second or third decade of life, because reconstructive surgery does not establish fully physiologic pulmonary and systemic circulation and most heart transplantation patients eventually experience graft failure, usually as a result of rejection or medication-associated coronary artery disease.

Are current outcomes in HLHS surgery good enough to require surgery even despite parental objections? Kon et al will educate, offer all options, and respect parental authority. Feudtner will educate, but does not make clear whether he will offer all options. Feudtner does, however, clearly indicate that not offering comfort care as an option is morally permissible only when the physicians will help the parents find an institution that would respect their preference for palliative care. Wernofsky, however, will not educate families fully. Feudtner argues that Wernofsky needs to revise his approach. Wernofksy should tell parents of a child with HLHS about all options, including palliative care, even when he believes it would be immoral to pursue that course. Feudtner also claims that Wernofsky need not offer or recommend palliative care for patients with HLHS, but when the parents ask, he should provide parents with information about how they could find an institution willing to respect the parents' decision.

Mercurio et al also noted that whether palliative care is a morally appropriate option for HLHS changes as surgical outcomes improve.22 They compared it with the case of extreme prematurity. Whereas >90% of extremely low birthweight infants (<1000 g) died in 1960, the survival rate surpassed 50% in the 1980s.23 Today, infants born <28 weeks but >500 g have an 80% survival rate.24 In the 1960s and through the mid-1980s, it was “reasonable” to withhold resuscitation and provide palliative care for premature infants of 28 weeks gestation. In 2008, however, virtually no neonatologist would withhold resuscitation, in the absence of obvious comorbidities that adversely affect survival or quality of life. Both the American Academy of Pediatrics and the Nuffield Council of the United Kingdom have recently concluded that the degree of prematurity at which it is “reasonable” to withhold life support has moved to 23 or 24 weeks gestation, when the overall survival rate approaches 50%.25, 26 This means that parents of a child born at 28 weeks gestation would not routinely be informed about palliative care unless complications develop that meaningfully affect an expected good outcome. However, parents of a child born at 23 weeks would still be educated about and offered the option of palliative care, even when the professionals would object to that course of treatment. When the professional or institution will not provide comfort care at this gestational age, they should help transfer the patient to an institution that would.

At what point does mortality and morbidity constitute a large enough concern to warrant disclosure of a palliative care option? Mercurio et al argue, as does Kopelman, that the issue involves whether palliative care constitutes an ethically acceptable choice, not necessarily a preferable one.22 They acknowledge that the acceptability of palliative care changes with improvements in outcomes and requires that the judgments of physicians “need to be revisited frequently.”22 Feudtner argues, in contrast, that the point at which one must offer palliative care depends on the reasonable (lay) person standard, not a physician-centered standard. Both acknowledge that even when one strongly opposes palliative care in a particular situation, the physician may still have an obligation to inform parents that other medical centers will provide palliative care in similar circumstances.

How then does one decide whether palliative care remains a reasonable option? Feudtner seems to suggest that we need to poll the public periodically3; Mercurio seems to require that we poll clinicians.22 National polling methods could provide some useful data, but one would need to ensure that the respondents have access to, are aware of, and understand the most recent outcomes. Polling of either population (the public or clinicians), however, seems unwieldy because of the myriad other procedures that would have to undergo evaluation yearly or more frequently. The precise percentages of clinicians or parents who favor one approach or another seem less important than preservation of options for a minority, as long as the options do not clearly result in clear-cut harm to children. That is, use of poll results would require a priori consensus of the respondents about what makes palliative care a reasonable option.

According to Kipnis, the traditional view in pediatrics uses a distinction between cases in which the outcomes are predictably good enough that treatment is considered mandatory and palliative care is not permitted versus situations “in which outcomes are uncertain enough or bleak enough that treatment is considered optional” and palliative care is permissible.9 Kipnis argues that the practice of rejecting palliative care when there is a reasonable chance of good outcome ignores the 3 types of uncertainty that undercut any general obligation9: “1) the vagueness of the boundary at which an infant's deficits become so intolerable that death could be reasonably preferred; 2) the uncertainty about whether aggressive treatment will result in the survival of a reasonable healthy child or, alternatively, the survival of a child with intolerable deficits; and 3) the inability to determine an acceptable ratio between the likelihood of those 2 outcomes.”9 We, along with Kipnis, are concerned that most current “reasonableness standards” focus only on the probability of a good outcome, whereas some parents, physicians, and philosophers are risk-adverse and would argue that the likelihood of a good outcome can be outweighed by the probability of survival with intolerable deficits, an outcome that is judged to be worse than death. The focus must be on the chance of significant morbidity that would make survival not worth having. When the risk of intolerable deficits is not miniscule, then treatment should be optional. Ross, like Kipnis, argues for greater parental discretion when there is broad variability in outcome.11

Mercurio et al argue that the decision about when to offer palliative care raises justice concerns: if we would offer palliative care to a 23- to 24-week premature infant with a 50% chance of survival and significant risks of moderate to severe morbidites, then we should offer palliative care for infants with HLHS. Their point is that similar cases should be treated similarly.22 We agree and believe that the practice of Wernofsky and others who only offer surgical options to children with HLHS remains morally suspect, just as is the practice of neonatologists who do not offer comfort care for children born at the limits of viability (23-24 weeks). Moreover, considerations of justice push us to recognize the implicit power imbalance that functions as a root cause of injustice when considering what physicians may offer, or not, to patients and families. As the gatekeepers of clinically available options, it is unjust to withhold information about options that a reasonable person might want to know. Physicians do not have an unbridled right to substitute their own beliefs, no matter how sincere or deeply held, for those of the patients and families they serve.27, 28, 29, 30 Conscientious objection in medicine has a particular social meaning because of the inequality of access to information and expertise between the physician and the patient or surrogate.27, 28 Withholding information about reasonable options constitutes an unconscionable exercise of power that cannot be tolerated in our heterogeneous society.27, 28, 29, 30

Claims of conscientious objection by professionals that entail withholding of information fail when used to preserve the values and privileges of the professionals at the expense of enforced ignorance, and thus decreased access to reasonable options, for their patients. We acknowledge the sincerity of professionals' beliefs and recognize their right to claim conscientious objection in other circumstances. But in their professional role as stewards of medical information and possessors of specific skills required by patients and their families, clinicians have an ethical and legal obligation to inform patients of all reasonable options as defined by a lay person standard. Clinicians who will not fulfill their professional obligations to educate abuse the privilege of serving a vital public interest granted to them by societal mechanisms and for which the physicians receive considerable social and economic autonomy and reward.30 Clinicians with an unremediable objection to full disclosure of reasonable options can, of course, voluntarily choose to avoid the situation by choosing an alternate profession, or at least an alternative area of medicine.27, 29

The withholding of information has special importance in pediatrics because children cannot make decisions for themselves and depend on surrogates (usually well-meaning parents) to make decisions on their behalf.3, 10, 11 Children need their physicians to educate their parents, and parents need to make fully informed decisions about the best interests of their children. Proper decision-making requires a transparent consent process that fully discusses the risks, benefits, and alternatives to recommended interventions.

The objection to physician claims of conscientious objection in pediatrics may be greater than in other areas of medicine because of the moral constraints on the decisions made by surrogate decision-makers. Whereas a competent adult can choose to make medical decisions for himself or herself in ignorance, or can at least limit the amount and type of information that his or her physician provides, surrogates do not have such leeway.3, 10, 11 To fulfill their role, parents need to be informed about all reasonable options to determine what is in their child's “best interest.” A physician's claim of conscientious objection to withhold relevant treatment options violates the parent's obligation in his or her role as surrogate. The physician's right to conscientious objection is and must be restricted when it interferes with the professional duty the physician owes to others, particularly when it may prevent these others (parents) from discharging their own moral duties.

Critics should not try to refute this position by an argument ad absurdum: The position that clinicians must inform even against their own strongly held beliefs does not mean that clinicians must offer palliative care to parents in all circumstances. It is not reasonable, for example, for a physician to offer palliative care for an acute pneumonia in an otherwise healthy child. Feudtner provides a simple method for distinguishing reasonable options for the child with acute pneumonia from the reasonable options for the child with HLHS. He argues that the range of appropriate options changes on the basis of the current state of therapeutic innovation. As treatments and outcomes improve, both for lower morbidity and lower mortality rates, fewer parents will want the palliative care option.4 As long as a significant minority believe that palliative care does serve a child's best interest, however, all parents need to be informed.3

For the HLHS debate, we believe that physicians in 2009 still have an obligation to assist parental deliberation and choice through full and thorough information about all reasonable options, both surgical modalities and non-surgical comfort care. Although surgical mortality has decreased, survival statistics alone cannot eliminate the option of palliative care without surgery. Common inherent comorbidities of HLHS and the complications of prolonged cyanosis and repeated open-heart surgeries still involve substantial burdens for the patients such that palliative care remains a reasonable option. Parents retain the right to know about the option to refuse life-prolonging surgery and to make their decision on the basis of a benefit-burden calculus that focuses on their child's best interest. This right does not obligate the physician to provide palliative care, but it does obligate the physician to educate and, when necessary, to refer. In a heterogeneous, morally pluralistic society in which no clear-cut consensus exists about the “right” course of action, physicians may not use their personal beliefs to deny families access to a comfort care-only approach.

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We thank Ann Dudley Goldblatt, JD, LLM, and 2 anonymous reviewers for their thoughtful comments on an earlier version of this manuscript.

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References 

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 The authors declare no conflicts of interest.

PII: S0022-3476(09)00221-2

doi:10.1016/j.jpeds.2009.03.008

The Journal of Pediatrics
Volume 155, Issue 1 , Pages 12-15, July 2009

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