Doctors are required to notify Child Protective Services (CPS) if parents do not provide appropriate medical care for their children. But criteria for reporting medical neglect are vague. Which treatments properly fall within the realm of shared decision-making in which parents can decide whether to accept doctors’ recommendations? Which treatments are so clearly in the child’s interest that it would be neglectful to refuse them? When to report medical neglect concerns to CPS may be controversial. It would seem inhumane to allow a child to suffer because of parental refusal to administer proper analgesia. In this ethics rounds, we present a case of an adolescent with chronic pain who is terminally ill. Her parents were not adherent to recommended analgesia regimens. Her palliative care team had to decide whether to report the case to CPS.

Parents have an ethical and legal obligation to provide appropriate medical care for their children. If they do not, doctors are legally required to report concerns for child neglect to Child Protective Services (CPS). However, criteria for reporting neglect are vague, and the threshold for reporting may be controversial. With the rise of pediatric palliative care, new dilemmas arise about whether parents can be neglectful in their provision of palliative treatments. These dilemmas raise questions, too, about the proper remedy. It would seem inhumane to allow a child to suffer because of parental refusal to administer proper analgesia, but it would also seem inhumane to remove a dying child from her home and the care of her loving parents. In this ethics rounds, we present a case of an adolescent with chronic pain who is terminally ill. Her parents were not adherent to recommended analgesia regimens. Her palliative care team had to decide whether to report the case to CPS.

“Jessica” was a 13-year-old girl who was dying of stage 4 neuroblastoma. She was referred to a pediatric palliative care service. At that time, she was attending school, eating fully by mouth, and self-administering medications via gastrostomy tube (GT). Her GT was placed when she was 11 years old for supplemental nutrition and enteral chemotherapy. As her disease progressed, she developed worsening pain, ultimately necessitating opioids. Both Jessica and her parents’ primary goals were for her to remain at home and comfortable for her end-of-life care. The palliative care team focused on optimizing pain and symptom management at home. They helped enroll Jessica in a home hospice program.

Jessica’s parents always let her administer her own pain medication. Her parents did not assist or supervise her self-medication, even as she became weaker. This resulted in poorly controlled pain and constipation. Jessica often cried in pain to her hospice nurse reporting, “no one is giving me my medicines.” At the same time, she was hesitant to let anyone touch her GT.

Jessica’s progressively increasing pain necessitated the addition of a long-acting opioid. Methadone would have been optimal. However, methadone requires routine and reliable administration to optimize safety and efficacy. Instead, the palliative care team prescribed a fentanyl patch. It provided ease of administration, although it also had unpredictable drug bioavailability related to the patient’s cachexia. Jessica made repeated calls to her school nurse noting uncontrolled pain and requests for help.

Jessica’s multidisciplinary team considered reporting the case to child protection as suspected medical neglect. The providers disagreed, however, about whether such reporting would do more harm than good and ultimately decided not to report.

In the pediatric ethics literature, much attention has been given to end-of-life issues such as do-not-resuscitate and intubate orders, futility, and withholding and withdrawing life-sustaining therapies. These discussions generally involve the ethics of refusing life-sustaining measures. There is a paucity of literature on the ethical issues related to the refusal of palliative measures for a child who is terminally ill. This case highlights the need for a thoughtful approach to concerns of child abuse and neglect at the end of life.

For Jessica to live as well as possible for as long as possible, her providers engaged in open and honest conversations with her and her parents. Jessica had stated her goals clearly. She wanted to remain at home, be in minimal pain, and be in charge of her own medications. To minimize pain, Jessica required meticulous attention to symptom management. To help honor her wish to remain comfortable at home, she was enrolled in hospice. Unfortunately, she did not follow the prescribed analgesic regimen nor did her parents encourage her to do so. She lived in chronic, relievable pain. Her own stated goals were conflicting.

Jessica’s parents clearly thought she was capable of taking care of herself. They said, “She does not like us to touch her G-tube so we just let her manage it.” Everyone on the care team wanted to respect both Jessica and her parents’ preferences; yet, some providers worried about parental neglect.

The medical team questioned Jessica’s ability to understand the impact of her decisions as they related to her complicated medical situation. To have autonomy, an individual must demonstrate decisional capacity. The capacity to make a decision depends on the nuances of that individual decision, so that an individual person may have capacity for some decisions and not others. Children develop decisional capacity continually throughout childhood and adolescence. Some children living with chronic diseases become increasingly savvy in their understanding of the disease process and implications of decisions and attain decisional capacity over complex decisions at different rates than healthy children. Alternatively, some terminal illnesses lead to variable levels of consciousness and therefore shifting levels of decisional capacity. In the best of situations, a 13-year-old child has limited ability to fully understand the myriad of consequences of a given decision. However, a developmentally appropriate child of this age should be able to express when she wants better pain control and weigh that against her fear of others accessing her GT. Furthermore, her parents are the appropriate surrogate decision-makers. Their preference to respect her decision should be honored unless there is clear harm to Jessica that both outweighs her own preference to manage her GT medications and her parents’ preference to defer to Jessica.

The medical team was concerned that the parental refusal to assist in managing her pain constituted medical neglect. The ethical questions are numerous: What is in the best interest of Jessica? What weight should be given to Jessica’s or her parents’ preferences? How much pain is enough to cross the threshold of harm? Is there harm inherent in the involvement of CPS? Should the ethics of involving CPS change in the context of terminal illness?

Once the concern for neglect was raised, the palliative care team coordinated a team meeting. Providers from oncology, social work, and hospice as well as the school nurse discussed whether to report to CPS. All agreed that Jessica’s pain was not well controlled. There was a lack of consensus around best next steps. Most providers did not think it appropriate to report the case to child protection. They feared such a report could lead to the removal of Jessica from her home during her last months of life. These providers prioritized family unity and minimization of psychological harm over optimal symptom management. Other providers wanted to report, arguing that inadequate treatment of the pain of a child who is terminally ill at end of life constituted medical neglect. They suggested that state involvement might lead to more services in the home and better medical attention there. In the end, the team chose not to report.

Levi1 proposed an ethical framework around reporting child abuse and neglect, but it is not specific to patients who are terminally ill. It is suggested in this framework that mandated reporters report suspected neglect or abuse unless (1) there is a reasonable belief that reporting will result in net harm for the child, (2) there is confidence that the child is not at risk for further harm, (3) other alternatives would also result in significant harm, and (4) the nonreporter is prepared to defend this decision in court.1 One challenge of applying this framework to patients who are terminally ill is in the appraisal of harm in the context of the goals of care. A patient with the primary goal of prolongation of life is willing to tolerate more harm than a patient with the primary goal of comfort, and so an assessment of net harm or significant harm must be informed by the goals of care.

The central problem was that Jessica was being treated as a competent decision-maker, but she was not acting like one. She wanted help but also wanted to be independent. The medical team wanted to respect Jessica’s emerging autonomy as an adolescent; they simultaneously struggled with her conflicting messages and developmental immaturity.

The best-interest standard was difficult to apply in this case. It was unclear whether it was in Jessica’s best interest to honor her independence or to override her stated wishes to reach her own stated goals. The harm principle was equally ambiguous.2 Any option would have caused harm, but the harms were of vastly different types. One option would require overriding her autonomy, whereas the other would allow her to suffer. A third would be to involve the state, which could theoretically result in harm by fracturing the patient-family-provider relationship, or worse, the potential for removal of the child from the home. Furthermore, the medical team could only estimate the likelihood of each of these harms. They did not know if she would be upset by a more paternalistic approach nor if a report to child protection would lead to further harm.

There are relevant contextual issues. First, mandatory reporters who have experience with CPS are sometimes apprehensive about reporting cases because of concern that CPS involvement will (1) achieve nothing, (2) disrupt the family (particularly if there turns out to be no abuse or neglect), and/or (3) lead to a breakdown of trust between the reporter and the family. Second, reporters are mandated to report if there is “reasonable suspicion” of abuse or neglect, but this is not well defined and is therefore applied inconsistently in different settings, which leads to underreporting of legitimate cases of abuse and overreporting of families in which no abuse has occurred. Third, minorities are significantly more likely to be reported and investigated for suspected abuse and neglect, which constitutes a considerable social justice problem leading to additional disparities in reporting, although this does not appear to play a role in this case. Mandatory reporters need to be cognizant of inherent biases when making this determination.1 

The medical team holds some inherent biases regarding Jessica’s quality of life, but there does not appear to be harm to Jessica that is sufficient to outweigh her and her parents’ preferences in this case. Therefore, an ethical analysis supports the family’s decisions regarding Jessica’s care and would consequently not espouse the reporting of medical neglect. An alternative path would be to consider consultation with the ethics consult team to mediate communication between the family and medical team and provide education regarding the ethics of child abuse reporting.

Defining what specifically constitutes medical neglect in the context of pediatric palliative care cases is an understudied, novel concept; when palliative care is premised on honoring a patient and family’s goals of care, what then constitutes “neglectful” behavior? In the clinical report entitled “Recognizing and Responding to Medical Neglect,” the American Academy of Pediatrics provides a framework by which pediatricians may conceptualize medical neglect generally, including key criteria for the diagnosis; in this report, medical neglect is defined as a failure to recognize or respond to a child’s medical needs, by either failure to heed obvious signs of serious illness or ignoring medical treatment team instruction once medical advice has been sought.3 Recommended medical care must offer significant net benefit to the child, the anticipated benefit of medical care must be greater than its risk of harm, and medical care must be accessible but unused. The caregiver must also clearly understand the instructions of the medical treatment team.3,4 Arguably, application of these well-defined principles to pediatric palliative care cases is feasible.

Although factors underlying medical neglect may be multiple and complex (eg, poverty and/or economic hardship, lack of access to care, family chaos, caregivers’ belief systems, the child’s attitudes and behaviors3), discovery and recognition are critical. Contributing factors should be addressed and targeted for support in a minimally intrusive, collaborative partnership between the medical treatment team and caregiver. Identification of these contributing factors does not justify the neglectful behavior nor should it account for continued occurrence of persistent harm or risk of harm to the child. Understanding “why” medical neglect may be occurring does not relieve the treatment community of its duty to appropriately and promptly respond to ensure child safety.

The medical treatment team’s response to concerns for medical neglect should be child focused. As a last resort, under circumstances in which the caregiver is unwilling or unable to cooperate with the care delivery plan for the child, protective custody may be the only safe alternative.3 

Different rules do not apply for dying children.

Undoubtedly, the family of the dying child is under significant duress. Yet also undoubtedly, the dying child has rights to safety, protection, and optimal care equal to that given to a child without a terminal diagnosis. One can be sensitive to the unique stress of the family in crisis facing the imminent death of their child, recognize that palliative medicine upholds family autonomy as a core tenet of care, and file a report with child welfare because of concerns for medical neglect as a necessary measure to ensure that end-of-life care is optimized.

In this case, the adults in Jessica’s life allowed the child to manage her own medications. This often resulted in poor adherence to prescribed regimens. The child was known to contact her school nurse frequently after hours to discuss her pain level, what pain medications she should take, and for support around pain management; the child was counseled this was an inappropriate role for her school nurse; however, it is indicated in medical records that her family was not considered an appropriate alternative support around this teenager’s pain management. As a result of this child singularly managing her complex pain regimen and lack of direct caregiver oversight, it is highly likely that this child suffered unnecessary pain or a pattern of harm because of medical neglect.

The recommended health care (optimal pain management) offered significant net benefit to the child. Health care was available and unused; the teenager had a medical team working closely with her to develop an appropriate pain regimen, access to 2 large pediatric hospital networks, and an invested home hospice nursing team. Her caregivers probably understood the medical advice given, although they may have been in a state of denial. The medical treatment team documented repeated efforts to explain treatment rationale to her parents, without a change in behavior or improvement of the teenager’s clinical care.

The issue of adolescent autonomy, based on the teenager’s age at death, makes this a particularly difficult case. Teenagers are often involved in their own medical decision-making. In this case, the teenager often refused to take medications, sometimes because of side effects, sometimes because she simply did not want to. Had she been a few years younger, her lack of caregiver engagement would likely not have been tolerated. Her caregivers were reluctant to discuss her prognosis with her, which suggests this teenager was likely making medical decisions without fully understanding her diagnosis. She reportedly refused medications by mouth because of a fear of swallowing pills, but even medications that could be administered through her GT were often not given appropriately. Should a 13-year-old be expected to handle these responsibilities and make an informed decision while dying?

If this is medical neglect, should this case have been reported to child welfare? We believe it should have. We are not convinced by arguments that reporting would lead to the child’s removal from the home and thus cause more harm than benefit. The aim of child welfare in this case (and every case) is to support the family in crisis, through a purposeful and intensive inventory of kinship resources, to optimize family unit functioning and then to exit as quickly as possible from family life. The goal of child welfare is family unification, not separation, and the misperception that this child would have been subject to automatic removal is probably wrong. Although the response from child welfare is impossible to predict (predicated on their investigatory findings), intensive case management, oversight of medication administration, and in-home supervision of her caregivers to ensure medical needs were met were all likely possibilities. Reporting to child welfare can certainly stress the relationship between the treatment community and family; however, focusing on the impact of the neglectful behaviors on the child should be the primary determinant around the need to intervene. Perhaps an alternative approach to neglect concerns during end-of-life care should in fact be adopted, namely, that of a lower threshold to report to child welfare, and reframing of their involvement not as punitive, but as a supportive aid to families in crisis.

Pediatric palliative pain management is critical and complex. Ensuring a patient’s access to appropriate pain management is the responsibility of the health care team.5 This effort is concurrent with the parents’ authority to make decisions for a minor and a patient’s ability to express their preferences for pain management. When a parent does not use their authority to advocate for care that adequately minimizes harm to their child, a health care team may report to CPS. There are 2 questions that must be addressed in this case: (1) Did the parents fail to provide adequate care? (2) Would the patient’s care have been significantly improved if the case was reported to CPS?

In the case, the parents are presented as supportive of care under the direction of the palliative team and not opposing clinicians’ nor their daughter’s preferences. The health care team’s concern is that the parents seem unwilling to take a more active role in the oversight and administration of their daughter’s medications. One might argue the parents should be reported strictly on the result of inadequate pain management, a potentially unnecessary harm for their child. Others might argue that the parents’ behavior is consistent with good intentions but inadequate information and training.

The parent’s behavior might be explainable by efforts to put their daughter’s desire for independence over her pain management.5 Mature 13-year-olds can often participate in decision-making and follow a treatment plan fairly independently.5,6 Jessica seems to have the ability to make at least some decisions for herself. She has full cognitive function, understanding, and no neurologic disease.7 However, with her declining condition, it is likely best for her parents to take a more active role in making decisions, using her assent or dissent as guidance.8 One strategy that may work is shared family-centered decision-making by which all family members share their goals and values with clinicians, clinicians address each members’ viewpoints, and an informed decision is reached from a consensus of all members’ goals of care.9 

In assessing if the parents have failed to provide adequate care, we could question if the parents had the medical literacy to understand management options, such as fentanyl versus methadone. Likewise, were they aware of their child’s discussions with others about pain? There are numerous reasons a child might conceal pain from their parents or reach out to others to discuss pain as fatigue and anxieties increase and the end of life nears.10 Mutual pretense could be at play, a situation in which adolescent and parents try to “protect” the other from the realization that death is approaching by not openly discussing it with each other.

The goal of reporting a case to CPS would be to improve the child’s care. But health care professionals often worry that involving CPS may do more harm than good, especially for the provider-parent and provider-patient relationship. Preserving trust in confidentiality and maintaining therapeutic rapport is likely to improve honest communication and positively impact care. Before involving CPS, all other resources should be maximized, including making full use of the hospice social worker and consideration of daily nursing visits to provide additional support.

This case illustrates the challenge of providing well-coordinated, constantly evolving, team-based pain management. As the patient weakened and additional delivery options were considered, GT concerns, preferred roles, and barriers to treatment adherence needed to be frequently assessed. For example, the hospice nurse could have been asked to prepare the doses if the parents were fearful of that task. For patients with cancer at the end of life, it is normal to frequently titrate up pain medications and modify goals of care, especially as comfort overtakes the concern for normalcy and functionality.11 Ensuring that the patient, family, and medical team have the same goals of care can make titrating and care adjustments easier. For example, methadone management was ruled out early because it required reliable administration; however, if methadone was desired later, daily home hospice visits or inpatient hospice could have been selected.

Finally, despite adequate treatment, studies reveal that of children who die of cancer, only 21% of patients achieve pain relief at the end of life.11 Although it is upsetting to see a child in pain, this continues to be a reality despite the efforts of pediatric palliative care and hospice working with a patient and family as a multidisciplinary pain management team. The distressing feature of Jessica’s case is that it would likely have been possible to provide better pain management had she and her parents been able to be more adherent to the treatment plan.

The goal of all the health professionals in this sad case was to relieve the pain of a dying teenager. The teenager shared those goals. Her parents either did not or were unable to recognize that the goals were not being met. In an ideal world, there would be a way to help the teenager receive adequate pain medication without accusing her parents of neglect. In our world, however, the tortuous and circuitous path to adequate palliative care may require professionals to jump through the legal hoop of first declaring her parents neglectful. One would hope that the professionals would work collaboratively with CPS to ensure that the proceedings were as collaborative as possible, were not punitive, and allowed the child to remain at home. If that could be achieved through a report to child protection, then it may be the best way to meet the needs of the teenager and her parents.

Drs Levy, Benson, Miller, Deutsch, Higgins, Lantos, and Ms Weeks contributed to the design of this article, the drafting of the manuscript, and the review of the manuscript; and all authors approved the final manuscript as submitted.

FUNDING: No external funding.

CPS

Child Protective Services

GT

gastrostomy tube

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.