For Victims of Fatal Child Abuse, Who Has the Right to Consent to Organ Donation?

John was a 3-year-old toddler admitted to the PICU after sustaining a near-fatal head injury from suspected child abuse while under the care of his mother’s boyfriend. The mother’s boyfriend originally described that while John’s mother was at work, he had brought John to his auto body shop; John had accidentally run into equipment while playing, became dizzy and complained of pain, after which John was placed to sleep in his bed at home. John was eventually brought for care later that evening when he developed profound altered mental status and was diagnosed with a significant subdural hemorrhage, cerebral edema, and hypoxic injury requiring decompressive craniectomy. Because of concerns for the severity of John’s head injury and implausibility of the injury mechanism, child protective services and law enforcement were contacted; during the investigation, the mother’s boyfriend confessed to physically abusing John and perpetrating his near-fatal head injury through a series of shaking and impact events. The mother’s boyfriend was arrested and charged with abuse.

Despite surgical intervention, John’s intracranial pressure continued to rise, and he continued to clinically deteriorate. Throughout John’s hospitalization, his mother remained at his bedside. John’s mother was on probation for criminal neglect involving John and his sibling. She was not permitted to have any unsupervised contact with them. Law enforcement were concerned that John’s mother had been aware of his abusive injury and delayed seeking care to protect her boyfriend. John’s father resided in a foreign country and was not involved in his care.

The PICU team contacted an OPO to begin assessing John’s candidacy as an organ donor when it became apparent that John may rapidly progress to brain death stemming from his head injury. Because of concerns for abusive head injury and the need for a medicolegal death investigation, the ME office was also contacted to arrange for a postmortem autopsy.

At the time of John’s death, his mother expressed wishes that John’s organs be procured for life-saving donation to another child. The involved investigative agencies countered because of the need for collection of forensic evidence in the context of an active homicide investigation. The health care providers involved in John’s care, including the pediatric intensivists, trauma surgery team, and child abuse and hospital legal teams were unclear how to honor mother’s wishes while preserving forensic evidence integral to the case.

Traumatic injury is the major cause of death in children worldwide. Many traumatic injuries are a result of child abuse. Child abuse and neglect resulted in 1580 pediatric deaths in the United States in 2014.⁷  In 1988, child abuse was declared a national emergency and the US Advisory Board on Child Abuse and Neglect was formed.⁸  Some abused children suffer head injuries that lead to brain death. They are then eligible to be considered as organ donors.

Children account for 2% to 3% of patients on transplant waiting list. There is a dearth of organs available to children because many organs are too large for a child. Pediatric trauma surgeons who care for children who die in instances of suspected traumatic abuse need to simultaneously support legal investigation into the death of the child as well as facilitate organ donation from the deceased child. Supporting a legal investigation into suspected physical abuse can be important in eventual prosecution of the perpetrator and, therefore, for prevention of abuse toward other living children. Facilitating organ donation serves the immediate needs of those children with ongoing, life-threatening disease on the transplant waiting list. The goals of forensic evaluation and the goals of organ procurement must be balanced. There are ways to do that so that these goals are not mutually exclusive.

In 2010, the American Academy of Pediatrics released a Policy Statement on Pediatric Organ Donation and Transplantation stating that “protocols should be developed that allow cooperative examination of evidence and injuries so that organ donation can successfully proceed in cases in which forensic investigation is required.”⁹  Although organ procurement in the face of needed legal investigation presents unique challenges, it does not and should not prohibit organ donation. Clear and open communication and collaboration between the ME or coroner and the treating physicians, OPO, and transplant team should result in thorough legal investigation as well as successful procurement.

Some MEs believe that children who have died as a result of abuse with the need for thorough forensic investigation should not be organ donors. However, there are protocols through which data are shared between the trauma team, intensivist, OPOs, and MEs including history and physical, laboratory and imaging studies, and surgical and autopsy findings. By using these protocols, forensic needs can be met, and organs can still be recovered. These protocols can be important in the overall availability of organs because it is estimated that 70% of potential donors fall under the initial medical jurisdiction of the ME.¹⁰  It is particularly germane to pediatric organ availability because nearly one-half of all ME denials occurred in the pediatric population.¹¹ 

These ME’s fear being held personally accountable for compromising the outcome of prosecution and so will not permit procurement of organs for transplant in the event of an active homicide investigation. This fear persists despite the lack of documentation that the outcome of any case has been affected by procurement.¹²  In the National Association of Medical Examiners 2013 position paper on the “Medical Examiner Release of Tissues and Organs for Transplantation,” “ME/[coroner]s should permit the recovery of organs... in virtually all cases, to include cases of suspected child abuse, and other homicides, and sudden unexpected deaths in infants...”¹³  The National Association of Medical Examiners is working to achieve 0 ME denials.⁹ 

If the legal guardian of the victim of fatal child abuse elects to pursue organ donation, protocols should be in place to facilitate clear and effective communication between those advocating for a strong legal investigation and those advocating for life-giving organ procurement. The success of 1 agenda does not compromise the other. There are ways to achieve legal justice and also save the lives of children in dire need of life-saving organs.

Despite medical, legal, and ethical acceptance for the concept of brain death and guidelines for its determination, caring for any child who may progress to brain death brings unique challenges and controversies. Critical care providers are required to simultaneously support a grieving family and work to preserve the option of organ donation. Adding to the challenge of caring for these children is the pervasive misunderstanding of brain death by the lay public. Currently, the most frequent controversy pediatric intensivists face when diagnosing brain death is a family’s nonacceptance of the diagnosis.¹⁴  When brain death occurs, the PICU provider’s role quickly transitions from the acute resuscitation of an extremely ill patient to providing psychological support to the family. This may include support of the parents’ choice to donate their child’s organs.

In a recent epidemiology multicenter database study of 15 344 pediatric patients who died in PICUs in the United States, 20.7% were declared brain-dead.¹⁵  Suspected abusive trauma was the causative mechanism in 5% of children declared brain-dead. Brain death as a result of abusive trauma presents additional unique difficulties surrounding decision-making and organ procurement. In John’s case, his mother was accepting of the diagnosis of brain death. However, because of suspected child abuse as the cause of John’s death, questions arose as to the role his mother and the ME should play in giving permission for organ donation.

Protecting the option for organ donation is an important and routine part of end-of-life care for children in the PICU.^9,16  Studies reveal that organ donation can help families grieve and provide an opportunity for families to find meaning and legacy in their child’s death.^17,18  Successful organ donation relies on collaboration between the OPO and PICU team. Soon after admission, when there was a real possibility that John could progress to brain death, our local OPO was contacted. Early referral to a local OPO and a paired approach between the PICU staff and OPO has been recommended as the best practice to support the donation practice.^19–21  Consistent with the best practice to eliminate any conflicts of interest, the OPO on-site did not have contact with John’s mom, nor did our PICU team initiate a discussion about organ donation before declaration of John’s death.

Consistent with the 2011 updated guidelines for determination of brain death in pediatric patients endorsed by the Society of Critical Care Medicine and the Child Neurology Society,²²  John had an initial brain death examination performed by the pediatric neurologist that was consistent with brain death, followed by an apnea test performed by the PICU attending physician. John required vasopressor support for neurogenic shock as well as significant mechanical ventilation support for hypoxemic respiratory failure. Although under current consensus brain death guidelines ancillary testing is not required in addition to the clinical examination and apnea test to make a diagnosis of brain death, John underwent a formal brain death EEG with the intent to shorten the recommended interobservation period between the required 2 clinical examinations and diagnose brain death before John progressed to a cardiopulmonary arrest. Eight hours after John’s first brain death examination, a second brain death examination was performed by a different PICU attending physician. The results were also consistent with brain death. At this time, John was pronounced dead.

Normally after death pronouncement due to brain death in children, a child’s parent or guardian is approached by the OPO to offer the choice of organ donation. Although the OPO often takes the lead in these discussions, a paired approach involving the PICU team in a supportive role is often appreciated by families because they have an established connection with the critical care team. Nonoffending parents and guardians of children who are suspected victims of child abuse often retain the right of making medical decisions even at end of life. The presumption is generally held that the parents or legal guardian are making decisions that are in the best interest of the child.

The American Academy of Pediatrics endorses the role of parents of children with suspected child abuse to have a role in forgoing life-sustaining medical treatment if the parents seem to be acting in the best interests of their child. This parental right includes deciding about tissue and organ donation.²³  In many cases of fatal abuse leading to brain death, the medical team may be unaware of who the perpetrator of abuse is and, therefore, relies on the guidance of the department of family services and law enforcement to dictate who can and cannot consent for treatment.

When infants and children who are in apparent good health suddenly, unexpectedly, or suspiciously die, a medicolegal death investigation is warranted. The ME office may exercise immediate jurisdiction over the deceased. The ME office may also establish parameters around contact with the deceased by other medical providers, hospital staff, and family members to preserve critical forensic evidence. Although the priority is always to remain compassionate and considerate of family members at the bedside of the deceased, the necessity of a medicolegal death investigation may complicate direct family involvement during the end-of-life process. For example, bereavement activities, such as memory-making tokens, may be prohibited around concerns for potential evidence tampering.

Parents have the legal right to make decisions concerning the health and well-being of children. They also have the legal right to decide whether to donate a deceased child’s organs. However, these rights may be curtailed if the parents have egregiously abused or neglected their child. If an urgent need for expedient medical decision-making exists for a child who is a suspected victim of abuse or neglect by the parent and/or legal guardian, questions may arise regarding who can legally provide timely consent for treatment and interventions. In certain jurisdictions, protocols have been developed to expedite legal proceedings involving suspected child abuse and/or neglect to delegate appropriate surrogate decision-makers and reduce impact to the child through unnecessary complications and/or prolongation of suffering.²⁴ 

Conversations surrounding organ procurement and donation involving suspected child abuse and/or neglect victims are uniquely complicated. These decisions must be made quickly and with intention that purposely avoids a pitting of competitive ideals (such as organ procurement against forensic death investigation).

In the case described, John was declared brain-dead through well-established diagnostic testing completed in the intensive care setting. The local OPO identified John as an appropriate candidate for donation. But who had ultimate decision-making authority: the ME office, John’s mother or the OPO? Concerns were raised by John’s medical team regarding the appropriateness and unbiased intent of John’s mother’s decision-making around his death. Did she share the same hopeful wishes for her dying child to give life to someone else, or was she succumbing to external pressures from the OPO or family members to donate? Was she hoping her consent for donation would yield a benefit to her, such as a more favorable impression during the criminal investigation? Or perhaps the procurement procedure might mask signs of perpetrated trauma or confuse them with surgical interventions?

Complicating this particular case example were clear conflicts about professional jurisdiction; both agencies (ME and OPO) believed they had the final decision-making authority to overrule whether a parent was permitted to consent for organ donation and proceed forward with the procurement. In a flex of power, with the child stuck in the middle, the OPO was advancing swiftly toward donation (on the basis of the expressed wishes of John’s mother, who may not have been an appropriate decision-maker), whereas the ME denied the request, citing a limited understanding surrounding cause of death, active homicide investigation, and need to preserve critical forensic evidence. The institution providing medical care to John discovered that ∼1 year before, the state statute had been revised, authorizing the OPO with autonomy to proceed with organ donation over any restrictions imposed by an ME office in the state.

This triad, dying child versus OPO versus ME, is difficult to navigate. There is a need for balance between public health and criminal justice prerogatives. This case is used to illustrate a need to develop a collaborative protocol between the 2 agencies to promote cooperation. Proposed solutions to increase ME and OPO partnership include early and ongoing, improved communication with the ME office, development of policies and protocols regarding OPO and ME interaction in potential donor cases, and presence of the ME or assistant ME at the time of surgical organ procurement.⁵  The acute care hospital is uniquely positioned to facilitate the establishment of such protocols and procedures and must serve to keep the needs of the victim child and their nonoffending parent in the forefront.

Most MEs are in favor of allowing whole organ recovery for life-saving measures. However, the ME also has an obligation to adequately document findings that would support the final opinion as to the cause and manner of death.

In the vast majority of situations organ procurement can proceed so long as the organ recovery will not affect the integrity of the postmortem examination by creating too many artifacts that will make the examination or interpretation of antemortem findings difficult. This issue of misinterpreting trauma from medical and/or surgical intervention can be minimized in many instances by allowing (if possible) a brief examination of the individual with photography of major external examination findings before organ recovery. In some situations, this is not as simple as it sounds. To allow the ME to make an informed decision in support of organ donation, the ME must be provided with at a minimum the following information: (1) details about the nature and circumstances surrounding the illness or injuries; (2) detailed information about the extent of the illness or injury; and (3) the specific organs and/or tissues the organ procurement agency will like to recover. Only then can the ME decide whether to allow organ donation and may set restrictions on what organs or tissues can be recovered. If the ME is provided little or no supportive information or documentation, then the default position will always be to deny organ and tissue donation so as to preserve the integrity of the medical findings for appropriate documentation and interpretation.

During John’s hospital stay, initial evidence was used to point to his mother’s boyfriend as the perpetrator of abuse. John’s mother seemed to be making decisions in the best interests of her son.

The PICU multidisciplinary team, including a child-life specialist, social workers from both the child abuse team and PICU team, and pastoral care, provided daily psychosocial and bereavement support for John’s family at the bedside. The child-life specialist spent a lot of time with John’s siblings and cousins to process his death and participate in memory making in the form of handprints.

During John’s short hospital stay, the PICU team consulted the hospital’s specialized child abuse team, state department of family services, police, and ME. When made aware that John was declared dead by neurologic criteria, the ME informed our PICU staff that he would not approve organ donation. John’s mom expressed her wishes for her son to be an organ donor. The hospital’s legal team, risk management, and even members of the Delaware state government were urgently consulted overnight to collaboratively preserve John’s option for organ donation and honor the mom’s wishes.

Ultimately, John was taken to the operating room for organ donation with simultaneous forensic evidence collection through a partnership with the OPO and ME offices.

Cases of suspected child abuse test all our assumptions and guidelines about the role of parents in decisions for their children. We intuitively assume that, if parents abused their children, they should not be allowed to then make medical decisions. But things are often more complicated. Sometimes, it is unclear who perpetrated the abuse. Sometimes 1 parent is culpable but not the other. When the abused child is dying and decisions must be made about withdrawal of life support and organ donation, we should try to separate our concerns about abuse from our commitment to work with parents to make the best decision for their child.

We thank Dr John Lantos for his critical review of this article, suggestions, and feedback.

ME

medical examiner

OPO

organ procurement organization