When Parents and Providers Disagree

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parents and providers disagree

Douglas S. Diekema

When parents and providers disagree

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“Moral differences are not just different ­choices given the same facts; they are ­differences of vision….moral views are less the product of reasoning and more the result of an image, a slogan, a metaphor.”

—Duane Cady

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Introduction

Conflicts between parents and health care providers represent one of the most common ethical issues encountered in the care of children. In this article, I will begin with three cases, discuss and ethical framework for thinking about these cases, and provide some strategies for understanding why these conflicts occur that may aid us in preventing and resolving at least some situation in which parents and providers disagree.

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Three Cases

Taige Mueller was a 5-week-old with fever (101.3) brought to the emergency department (ED) for evaluation. After his examination, the ED physician’s impression was that Taige was irritable and lethargic—that she looked sick. In the physician’s judgment, based on the available literature on young infants with fever, Taige had a 3-5% risk of having a serious bacterial illness—meningitis, a bloodstream infection, or a urinary tract infection. After discussing his assessment with the parents, he recommended a typical “septic” workup—a blood draw to obtain blood, a catheterized urine collection, and a spinal tap to obtain cerebral spinal fluid. Following that, because of the infant’s young age, he also recommended treatment with antibiotics and hospitalization for at least 48 hours, at which time the results of cultures would be known. Taige’s mother consented to a partial workup, but refused the spinal tap, hospitalization, or treatment, preferring to take her baby home without treatment and return if she felt she looked more ill. Further efforts to persuade her to allow a full workup and treatment failed, so the physician involved the hospital social worker and child protective services was called. Before the night was out, Taige’s mother was restrained by police while a workup and treatment was accomplished. Eventually Taige’s parents sued the hospital and physician, claiming that the liberty interest to make decisions about the care, custody, and control of their child had been violated. [1]

Daniel Hauser was a 13-year-old from Sleepy Eye, Minnesota diagnosed with Hodgkin’s Lymphoma, and estimated to have a 90% chance of cure with standard treatment involving chemotherapy and possibly radiation. Following one round of chemotherapy, he concluded (along with his parent) that chemotherapy was toxic and self-destructive and chose not to undergo further treatment, preferring instead to rely on unproven methods including dietary changes and “ionized water.”

Further, as a member of a Native American religious organization known as Nemenhah, he claimed that forcing him to undergo treatment would violate his religious beliefs. He threatened to physically resist if forced to undergo any further treatment. Ultimately, a district court judge determined that Daniel, who could not read, failed to understand that he was seriously ill, had only a rudimentary understanding of the risks and benefits of chemotherapy, and was not a mature minor. His parent’s refusal to consent to chemotherapy represented medical neglect, and the judge ordered the family to report for a CXR and select on oncologist. Unless the tumor had advanced to a point where his prognosis had significantly worsened, the judge ordered Daniel to undergo treatment. If the family refused to comply, the judge threatened to place Daniel in temporary custody. Shortly thereafter, Daniel and his mother disappeared for 5 days, apparently headed for Mexico before having a change of heart and returning to Minnesota where Daniel submitted to treatment. [2]

Dennis Lindberg was a 14-year-old practicing Jehovah’s Witness whose parents (non-JW) had lost custody several years before because of substance abuse. Dennis lived with his aunt in Skagit County, Washington, and she had full legal decision-making authority. Dennis was diagnosed with Acute Lymphoblastic Leukemia and estimated to have a 70% chance of cure given chemotherapy and transfusions. Chemotherapy was started, but then stopped when Dennis, supported by his aunt who was also a Jehovah’s Witness, made it clear that he would not accept a blood transfusion. As his blood counts fell to dangerously low levels, the ethics consult service was involved and legal action initiated. In contrast to the case of Daniel Hauser, a Superior Court Judge declared Dennis a mature minor, allowing him to make the decision to refuse blood transfusions, a decision that resulted in his death a few days later. [3,4]

These three cases all involve the refusal of recommended medical interventions with potentially life-altering consequences for the child. They all raise slightly different issues, with one involving an infant, one involving an adolescent who was determined to be too immature to make medical decisions, and the other involving an adolescent who was deemed sufficiently mature to have his wishes respected. With these three cases providing context, I would like to make 7 observations about conflicts between parents (and adolescent patients) and health care providers over management of medical conditions in children.

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Observation 1:

Characterize things correctly

My first observation is simply to point out the ^­importance of correctly framing the ethical issues in situations where there is dispute over interventions involving children and adolescents. Using a ^­principle-based approach, many would conclude that cases like those above are conflicts between the principle of respect for autonomy and the principle of beneficence.  I would argue that the vast ^­majority of cases do not represent this kind of conflict. When we talk about respect for autonomy, we are talking about a patient’s autonomy, not a parent or surrogate ^­decision-makers. Taige Miller clearly did not possess decision-making capacity, and neither did Daniel Hauser (as the judge determined). While it might be argued that respect for autonomy does enter into the Dennis Lindberg case (who was granted full ^­decision-making authority by a judicial mature ^­minor determination), Dennis Lindberg is an ^­exception. The vast majority of situations involving children and ^­adolescents will not involve a patient with decision-making authority.

These cases are really disputes between the legal decision-makers (usually parents) and the health care team over the meaning of Beneficence. The ^­principle of beneficence states that persons have a moral ^­obligation to contribute to the good of others. [5] Medical professionals clearly have a duty to seek benefit for their patients. [6] Clinicians make recommendations regarding diagnostic testing and treatment based upon what they believe will optimize the welfare of the patient. Parents also have an obligation of beneficence to seek the welfare of their children. In most of these medical disputes, both the medical professionals and the parents are seeking to fulfill their duty under the principle of beneficence. They simply ^­disagree about how to optimize the welfare of the child.

Assessing benefit and harm is not always easy, ^­especially when those benefits and harms may occur in only some patients. The concepts of harm, ^­benefit, and best interests are value-laden. What seems to be a minimal harm to a medical professional may seem like a huge harm to some patients or parents. ^­Clinicians and patients (or a patient’s legally ^­authorized decision-maker) may disagree about whether a possible benefit from testing or treatment justifies the potential harms. While clinicians may exclusively consider the benefits and harms of a given therapeutic course, patients and families may consider other factors in their assessment, like the impact of the medical recommendation on other aspects of the patient’s life, and they may weigh the trade-offs between benefits and burdens differently.  The clinician comes to one conclusion, the parents to another. Both seek the best interest of the patient.

Observation 2:

The standard by which we ask that decisions be made on ^­behalf of children is different than the standard by which we judge those decisions to be ^­unacceptable (and therefore worthy of ^­interference by state actors)

Parents (or guardians) are generally empowered to make health care decisions on behalf of their children. In most situations, parents are granted wide latitude in the decisions they make on behalf of their children, and the law has respected those decisions except where they place the child’s health, well-being, or life in jeopardy. The best interest standard has evolved as the prevailing standard to guide surrogate decisions on behalf of another individual, and parents are expected to use the best interest standard in making decisions for their children.[7]

Parental authority is not absolute, however, and when a parent or guardian fails to adequately guard the interests of a child, their decision may be challenged, and the state may intervene. [8] Child abuse and neglect laws recognize that parental rights are not absolute. If a parent refuses to provide necessary care to a child, the state can assume temporary custody for the purpose of authorizing medical care under a claim of medical neglect. [9]

A clinician’s authority to interfere with parental decision-making is limited. Except in emergency situations where a child’s life is threatened imminently, or a delay would result in significant suffering or risk to the child, the physician cannot do anything to a child without the permission of the child’s parent or guardian. Touching (physical examination, diagnostic testing, or administering a medication or vaccine) without consent is generally considered a battery under the law. Only the state can order a parent to comply with medical recommendations. The physician’s options include either tolerating the parent’s decision (while continuing to try to convince them to act otherwise) or involving a state agency to assume medical decision-making authority on behalf of the child. This can take different forms, but most frequently either includes involvement of child protective services (under a claim of medical neglect) or a court order. Both of these represent a serious challenge to parental authority and will generally be perceived as disrespectful and adversarial by parents. Such action interferes with family autonomy, can adversely affect the family’s future interactions with medical professionals, and should be undertaken only after serious consideration.

What should be recognized, however, is that the nature of a determination to challenge a parental decision because it reaches a threshold of medical neglect is a very different decision than about which medical management course would be best for the child. This was recognized many years ago by Buchanan and Brock in their work on surrogate decision-making where they distinguished between a guidance principle and an intervention principle. [10] A clinician’s assessment of the best interests of the patient (using a guidance principle) is not sufficient to justify the involvement of state agencies in an effort to require testing and treatment over a parent’s objection (which requires an intervention principle).

Observation 3:

“Best Interests” may not be the most appropriate standard for deciding when to interfere with surrogate decision-making

The best interest standard serves as an ideal guideline for surrogate decision-making. The standard has its origins in Family Law where it is used to make decisions about adoption, custody, and foster care in a way that optimizes the welfare of the child (as opposed to other parties). It has subsequently been adopted as a means for surrogates to make decisions in a medical setting. [7] Physicians make recommendations that they think optimize the welfare of the patient, and surrogate decision-makers (like parents) are expected to also make decisions in the interest of the sick or injured child. But there is no objective measure of what is best in many medical situations, and it can be difficult to define or get agreement from all parties about what truly would be most beneficial for a child. The standard is more easily applied to situations where a child’s life is jeopardized and where death can be averted with easy, safe, and effective treatments (like a single life-saving blood transfusion).

Determining “best interests” for another person is inherently a question of values rather than an objectively measurable calculation, which is why disputes over best interests may arise between parents and health care providers. Parents who are Jehovah’s Witnesses, for example, often truly believe that they are making a decision in the best interest of their child when they refuse to consent to a blood transfusion. In these situations, both parents and health care providers are already relying on the principle to determine what they feel is the best choice for a child. That same principle is unlikely to resolve the dispute.

The reality is that parents frequently make decisions for their children that others might judge not to be in the “best” interest of one or all children. In seeking to optimize family welfare, parental decisions may commonly subordinate the interests of individual children, and while the state can certainly intervene when parents endanger their children, the state is not justified in intervening simply because parental decisions may compromise the interests of one child in favor of those of another family member or the family as a whole. The reality is that the community, child protective services, and courts have an expectation that parents maintain a minimal level of care for their children, but they do not expect that all decisions optimize the welfare of children. [11,12] If they did, children would probably not be allowed to watch television, and every child would have to be provided with the best possible education and required to live in the safest neighborhoods where exposure to pollutants and crime was negligible.

Thus, while the best interest standard is an appropriate guide for choosing among alternative treatment options for children, making recommendations to parents, and making decisions on behalf of a child when the legal decision makers are either unable to make a decision or are in dispute, a different standard is required for deciding when to seek state interference with parental decision-making authority. To seek to interfere with a parental decision is to make a claim of medical neglect. The standard for making this claim is not that a parent’s decision fails to honor the best interest of a child, but that a parent has failed to provide “…the minimum quality of care which the community will tolerate.” [13]

Observation 4:

The Harm Principle is the appropriate principle for identifying the point at which state action is justified

Courts place a high burden on the state to prove the medical treatment is necessary before compelling treatment over parental objections, and they have been reluctant to require medical treatment over the objection of parents “except where immediate action is necessary or where the potential for harm is rather serious.” [14] In making decisions to interfere with parental choice, child protection agencies and courts appear to use reasoning that aligns with what has become known as the “harm principle.” The harm principle was described by John Stuart Mill in On Liberty:

“The only purpose for which power can rightfully be exercised over any member of a civilized community, against his will, is to prevent harm to others.  His own good, either physical or moral, is not a sufficient warrant.” [15]

Mill was arguing that in a liberal democracy, state interference with individual liberty may be justified only when the individual’s decision or action places others at substantial risk of serious harm. Joel Feinberg has further refined the harm principle to include the requirement that interference with individual freedom must be likely to prevent harm to others, and that no other options less intrusive to individual liberty are available. [16]

The “best interest of the child” fails to focus on the relevant standard for determining when state action is justified. The harm standard focuses discussion in the proper place, and discussions about whether to seek state interference with a parental decision should reflect the language of avoidable harm, rather than best interest. According to the harm principle, parental decisions should be tolerated except in those rare cases where the decision of a parent places the child at significant risk of a serious harm. State authorities may be justified in interfering with parental decisions when there is evidence that parental actions or decisions are likely to harm a child.

For the harm principle to be helpful, however, we must identify the level of harm to be tolerated in parental decisions. Not all harms should trigger state intervention. Parents should be granted some latitude in making decisions for their children, even when those decisions may pose some small degree of risk to the child. Feinberg sets the harm threshold as a “significant risk of serious harm” and suggests that serious harm includes interference with interests necessary for more ultimate goals like physical health and vigor, integrity and normal functioning of one’s body, absence of absorbing pain and suffering or grotesque disfigurement, minimal intellectual acuity, and emotional stability. [16] Ross suggests that state intervention should be limited to cases in which children are placed at the level of harm that occurs when they are deprived of basic needs or when parental decisions to refuse a treatment place the child at high risk for serious and significant morbidity and the treatment is of proven efficacy with a high likelihood of success. [8]

Others have come to similar conclusions regarding the harm threshold for state intervention, settling on the kinds of harm that include loss of health or some other major interest, deprivation of basic needs, and deprivation of future opportunities or freedoms. [17,18] The American Academy of Pediatrics Committee on Bioethics [19] argues that state intervention should be a last resort, wielded only when treatment is likely to prevent substantial harm or suffering or death. While these suggestions vary somewhat, they share the notion that state intervention should not be trivial but should be triggered when a parental decision places the child at significant risk of serious harm.

For the medical professional faced with a parent refusing to consent to a suggested course of treatment, the proper question is “Does the decision made by the parents significantly increase the likelihood of serious harm as compared to other options?” Furthermore, interference is justified only if interfering with the parent’s decision can prevent the harms in question. The burden rests on those challenging the parental decision to provide evidence of efficacy for the preferred intervention and demonstrate that the proposed course of action is required imminently to prevent harm. [20,21] There is a difference between a test or treatment of proven efficacy and those performed by convention (i.e., unproven standard of care). Finally, all alternatives short of state action must have been exhausted in seeking a mutually acceptable solution to the child’s medical condition.

The take-home point is that there are two principles with two different purposes. The Best Interest Standard serves as a guide for how physicians should make clinical recommendations and to assist parents in identifying what course of action should be pursued for their child. The Harm Principle is used to decide when to involve the state (through child protection agencies or court order) to seek to interfere with the medical decision-making of a parent or surrogate. These latter decisions are made not by asking whether an intervention is in the child’s best interest, but whether the decision made by the parents significantly increases the likelihood of serious harm as compared to the options proposed by the medical team. [22] In all three cases presented at the beginning of this article, the health care professionals rightly identified that to honor a parental decision placed the child a significant risk of serious harm.

One final note: Parental religious belief does not alter the limits placed on parental authority, and both ethics and law support interference with parental choices that are likely to result in serious harm to a child, regardless of whether the reasons are based in religious, culture or something else. The fact that Dennis Lindberg and Daniel Hauser made their claims on the basis of religious belief is not relevant to the determination about whether state action should be sought. The only relevant feature is whether the parent or surrogate’s decision places the child at significant risk of serious harm in comparison to the recommendations of the health care team.

Observation 5:

Adolescents should be taken ^­seriously and treated with respect

Whether adolescents should be allowed to refuse lifesaving treatments for any reason, including religious belief, remains controversial. Most commentators agree that adolescents should be involved in discussions about their health care and should be offered the opportunity to voice their feelings, opinions, and concerns; they should be provided reasonable opportunities to make choices and have those choices respected. On the other hand, there is no consensus as to whether any adolescent is truly mature enough to refuse lifesaving treatment in situations where there is likely to be a good prognosis with a proven intervention. While adolescents above the age of thirteen are capable of making rational decisions, they are less likely to do so under conditions of high emotion or intense pressure (including peer pressure). They are more likely than adults to act impulsively without full consideration of consequences, and they weigh current rewards and harms more strongly than future consequences of a decision. An adolescent, even at seventeen, may have difficulty seeing beyond the unpleasant symptoms of a chemotherapy regimen to the long-term benefit of such treatment. Furthermore, there is good reason to question the voluntariness of an adolescent’s expressed wishes when he or she may feel pressure from parents and a church community.

Many factors would be relevant in determining whether an adolescent possesses sufficient maturity to make a life-altering medical decision. Minimally, however, judges and clinicians should require a high level of psychosocial maturity and consider the adolescent’s ability to understand and reason, project meaningfully into the future, express a relatively settled set of values and beliefs, and demonstrate that his or her decision is driven more by long-term interests than short-term concerns. The chances of a good outcome with treatment and the burden of the proposed interventions are also relevant considerations. In general, I would be very reluctant to allow an adolescent to refuse interventions in a situation where we would not allow his or her parents to make that decision. That being said, the use of physical force is rarely justified in adolescents, particularly if it is required repeatedly to ensure treatment. In these situations, a health care provider may decide to forgo lifesaving interventions simply because the harm done by using force may not be justified, particularly in a setting of long-term therapy that requires the cooperation of the adolescent. [23]

Observation 6:

Parental requests or demands should be carefully considered, treated respectfully, but need not always be complied with

Situations in which parents request an intervention that is not medically indicated fall into a different category than those where parents withhold consent to an intervention or workup that is important to a child’s health and well-being. In this situation, there is no refusal of consent, and therefore no potential for the physician to commit battery. Unlike situations where a physician wishes to do something to a child that a parent has refused, situations where a parent requests something the physician feels is inappropriate do not require state power to limit parental choices. [22]

Health care providers need not always accede to parental requests. Health care professionals have an independent obligation to apply their knowledge and skills in a way that meets the standard of care and benefits the patient. Health care professionals should consider accommodating parental requests when a requested intervention will not harm the child, the intervention does not significantly harm others, and the potential for benefit is possible, but not established. However, health care providers should only perform those actions that have the potential to benefit the patient and will not cause unnecessary harm to the patient. It is always appropriate to limit interventions to those within the scope of the provider’s practice/standard of care.

Observation 7:

Procedural justice is important. There needs to be a process for resolution of disagreement that is fair

When conflicts arise between parents and health care providers, a mechanism that allows for the conflict to be resolved fairly is important. Most institutions have ethics consultation services and ethics committees than can serve this purpose. They are frequently underutilized, but often provide an ideal forum for allowing parties in conflict to express their views, explore common ground, and attempt to find a compromise solution.

Ethical disagreements represent conflicts between important values or commitments. Crafting a solution to those disagreements will require an understanding of the roots of the conflict. [24] In understanding conflicts, one must recognize that the most obvious disagreement—the conflict over what to do—is a reflection of deeper differences that reflect the character and vision of the participants. How do the individuals who disagree about the appropriate action differ with regard to the way they see and understand both themselves and the world.

Gaining insight into how the other person understands the situation can sometimes allow us to identify common ground, or perhaps to correct misperceptions in their understanding of the situation. Without attention to how a parent understands the situation in which they find themselves, without attention to how their commitments and beliefs influence the situation as they perceive it, one cannot begin to understand why they differ with regard to the action that should be taken. And without first attempting to understand how this decision fits into the narrative of the patient’s parents and family, there will be little hope of finding a satisfying conclusion without the use of state action. In the words of Duane Cady:

“Moral differences are not just different ^­choices given the same facts; they are ^­differences of vision….moral views are less the product of reasoning and more the result of an image, a slogan, a metaphor.” [25]

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This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

The authors have disclosed no conflicts of interest.

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Affiliations

Douglas S. Diekema, MD, MPH

Director of Education, Treuman Katz Center for Pediatric Bioethics
Professor, Bioethics; Professor, Emergency Medicine;
Adjunct Professor, Department of Bioethics and Humanities;
Adjunct Professor Department of Internal Medicine,
University of Washington School of Medicine
Adjunct Professor, Department of Health Service

Correspondence

[email protected]

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Endnotes

1 Mueller v. Auker, 576 F.3d 979 (9th Cir. 2009).

2 In the Matter of the Child of Colleen Hauser and Anthony Hauser, Parents. File No. JV-09-068 (Minn 5th Dist 2009).

3 Black C. Boy dies of leukemia after refusing treatment for religious reasons. Seattle Post-Intelligencer. November 29, 2007 At http://www.seattlepi.com/local/341458_leukemia29.html. Accessed January 13, 2020.

4 Raftery I. When a 14-year-old Chooses to Die Because of Religion, Can Anyone Stop Him? KUOW/NPR. November 4, 2015. At https://www.kuow.org/stories/when-14-year-old-chooses-die-because-religion-can-anyone-stop-him. Accessed January 13, 2020.

5 Beauchamp TL, Childress JF. Principles of Biomedical Ethics, 8^th New York: Oxford University Press, 2019.

6 Pellegrino ED, Thomasma DC. For the Patient’s Good: The Restoration of Beneficence in Health Care. New York: Oxford University Press, 1988.

7 Kopelman LM. ‘The Best-Interests Standard as Threshold, Ideal, and Standard of Reasonableness. Journal of Medicine and Philosophy 1997; 22: 271–89.

8 Ross LF. Children, Families, and Health Care Decision-Making. New York: Oxford University Press, 1998.

9 Hanisco CM. Acknowledging the Hypocrisy: Granting Minors the Right to Choose Their Medical Treatment. New York Law School Journal of Human Rights. 2000;16: 899–932.

10 Buchanan AE, Brock DW. Deciding for Others: The Ethics of Surrogate Decision Making. New York: Cambridge University Press, 1990.

11 Holder A. Circumstances Warranting Court-Ordered Medical Treatment of Minors. 1980; 24 POF 2d: 175–177.

12 Ross LF. Better than Best (Interest Standard) in Pediatric Decision Making. Journal of Clinical Ethics 2019;30(3): 183-195.

13 Sher EJ. Choosing for Children: Adjudicating Medical Care Disputes between Parents and the State. New York University Law Review. 1983;58: 157– 206.

14 Wing KR. The Law and the Public’s Health. 3rd edition. Ann Arbor, Michigan: Health Administration Press; 1990.

15 Mill JS. On Liberty and Utilitarianism. New York: Bantam Books; 1993.

16 Feinberg J. Harm to Others: The Moral Limits of the Criminal Law. New York: Oxford University Press; 1984.

17 Dworkin G. Representation and Proxy Consent. In Who Speaks for the Child: The Problems of Proxy Consent. Edited by Willard Gaylin and Ruth Macklin. New York: Plenum Press; 1982: 190-208

18 Miller RB. Children, Ethics, and Modern Medicine. Bloomington, IN: Indiana University Press; 2003.

19 American Academy of Pediatrics, Committee on Bioethics. Religious Objections to Medical Care. 1997;99: 279–81.

20 Diekema DS. Parental Refusals of Medical Treatment: The Harm Principle as Threshold for State Intervention. Theoretical Medicine and Bioethics 2004;25(4): 243-264.

21 Diekema DS. Revisiting the Best Interest Standard: Uses and Misuses. Journal of Clinical Ethics. 2011; 22(2): 128-133.

22 Diekema DS. Decision Making on Behalf of Children: Understanding the Role of the Harm Principle. Journal of Clinical Ethics2019;30(3): 207-12.

23 Diekema DS. Adolescent Refusals of Life-saving Treatment: Are we Asking the Right Questions? AMSTAR: Adolescent Medicine. 2011;22(2): 213-228.

24 Diekema DS. The Armchair Ethicist: It’s All about Location. Journal of Clinical Ethics. 2007;18(3): 227-232.

25 Cady DL. Moral Vision: How Everyday Life Shapes Ethical Thinking. Lanham, MD: Rowman & Littlefield; 2005.