Exercising the choice to donate their child’s organs may provide comfort, can help families grieve, and provides opportunity for families to have their child’s legacy live on after the child’s death (1–3). Professional organizations have determined that organ and tissue donation should be a routine part of end-of-life care for children (1, 4). Families of adult donors report the desire for something positive to come from their loss as a strong motivator to pursue donation (5, 6), and donation has positively impacted the families who achieve donation as part of their end-of-life experience with their child (1, 7–11).
Successful organ donation is founded on collaboration. Ideally, collaboration begins early with referral to the Organ Donation Organization (ODO) to explore the child’s eligibility and prepare each team and ODO to support the donation process. Family-initiated questions about donation that arise before formal discussions begin should be discussed or deferred to the ODO as appropriate (1). Early referral has been recommended as a best practice in many jurisdictions, has increased organ recovery, and is endorsed by multiple organizations (1, 4, 9–11).
Transparent separation of decisions in the care of the potential donor and the management of possible recipients is important—especially in the premortem phases of care. Whenever feasible, performance of the neurologic determination of death (NDD), prognostication decisions and decisions about stopping life-sustaining therapy for potential donation after circulatory death (DCD) donors, and death determination should be assigned to physicians not caring for the potential transplant recipients. Healthcare privacy laws include the privacy of potential donors; thus, discussing the donor with potential recipients or their families must not occur. Involvement of the surgical transplant team at any stage of patient management prior to death results in a clearly defined conflict of interest. In practice, these separations are well maintained, supported by local policies and practice and provider awareness.
National and international best practices for deceased organ donation emphasize that patient management should preserve the option of donation for potential donors prior to and after declaration of death (1, 4, 9–11). Fully informed consent/authorization, the intensive care team’s understanding of every step of the donation process, and ODO engagement are essential to eliminate confusion that can ultimately disrupt or affect donation and organ recovery and derail the expressed wishes of the child and/or parents.
Assessment of organ eligibility is best determined by an experienced ODO team; critical care team preconceptions about eligibility for donation may not be current or accurate. Thresholds for acceptable organ dysfunction vary according to time of evaluation, transplant program comfort levels, and recipient urgency. A positive blood culture, for example, does not preclude organ donation, and serial echocardiograms may be indicated to determine donor response to therapy for cardiac recovery for transplantation. Further, ongoing health policy changes can impact donor eligibility. For example, in the United States, a shift in donation eligibility was achieved when the HIV Organ Policy Equity Act was enacted in 2013 allowing donors who are HIV positive to donate organs that can be transplanted into HIV-positive recipients. Although this situation may be uncommon for pediatric patients, it emphasizes the need to engage the expertise of the ODO as part of high-quality end-of-life care.
Collaboration with investigative teams, medical examiners, and coroners is essential to successfully recover organs for transplantation and avoid lost opportunities for donation. Fear of losing evidence and the ability to successfully prosecute suspected homicide cases continue to affect recovery of organs in children where suspected homicide has occurred (12, 13). Early consultation to the coroner or medical examiner may lead to requests for additional noninvasive imaging that can enable investigation of the death without precluding donation. The U.S. National Association of Medical Examiners supports organ donation and states “Medical examiners and coroners should permit the recovery of organs and/or tissues from decedents falling under their jurisdiction in virtually all cases, to include cases of suspected child abuse, other homicides, and sudden unexpected deaths in infants (13).”
In our experience, parents tend to appreciate efforts to fulfill their request to donate their child’s organs, even when the child is not medically eligible to donate and when organs and/or tissues cannot be recovered following death. Tissues that may be donated include skin, bones, tendons, ligaments, heart valves, and corneas. Organs that brain dead donors may contribute include lungs, heart, kidneys, liver, pancreas, and intestines. Organs that may be donated following circulatory determination of death include lung, liver, kidneys, pancreas, intestines, and heart (14, 15). When practical considerations limited DCD donation, family members indicate appreciation of the donation attempt (16), and other family members who had previously declined to consent to DCD found that they subsequently regretted their decision not to donate (17).
NDD remains a relatively rare event and is not defined in children less than 36 weeks of gestational age (1, 7, 18, 19). The option of DCD has increased the total number of organ donors and allows donation for families if their child does not meet criteria for NDD (1, 19–21). There is increasing potential for neonatal organ donation to occur following neurologic death and circulatory death (22–24). En bloc kidneys from smaller pediatric donors are being recovered and transplanted with good success (25, 26). Smaller infants and neonatal donors can present surgical challenges for organ recovery and transplantation of liver and kidneys requiring specific surgical expertise. Liver recovery for liver cell transfusion therapy research is occurring from neonatal donors. These liver cells are currently processed and then infused in children with inborn errors of metabolism to serve as a bridge to liver transplantation (27). Future, applications may include other causes of liver failure. Heart recovery from neonatal donors has occurred following circulatory death (14, 15), and organs from anencephalic infants have also been recovered (28–30) illustrating the expanding options available to families who wish to donate their child’s organs. Specific pediatric clinical practice guidelines for DCD have been recently published to promote the medical, ethical, and legal framework for providing DCD in children (31). Discussion about ethical issues of DCD and donation after NDD is beyond the scope of this article. We refer readers to U.K. guidance documents on ethics and predonation interventions (32, 33)
CARE OF THE FAMILIES OF PEDIATRIC DONORS
Families and staff caring for potential organ donors must be prepared for the shift in goals—from life saving to organ preserving. The goals of the medical interventions may change; however, attention to patient dignity and family needs should not. Once a family has consented/authorized donation providers should sustain their focus on achieving recovery of as many organs as possible, in the best physiologic condition, to help as many other individuals waiting for a needed transplant. This is consistent with the families expressed wishes; however, tension related to perceptions that organ preserving medical interventions are misaligned with the child’s dignity can influence donation outcomes (34, 35).
The quality of communication between the ODO coordinator, medical team, and the family has great potential to influence the family experience of donation and donation outcomes. Sharing of generic and situation-specific information about duration of donor management can permit planning and conduct of important cultural/religious/family rituals before donation and help align organ preservation interventions while maintaining respect of the child and family wishes.
Providers must also prepare and inform family with information about bereavement, discuss the role of the medical examiner (if relevant), the process for release of the body following donation, and local policy/practices about donor family recipient contact. The article “Caring for Parents after the death of a child” expands on the important immediate bereavement care for the deceased child’s family in this supplement. Frontline providers should be informed about the donation process including how best to discuss donation with families. To provide accurate information and anticipatory support for families as the process proceeds requires engagement and expertise of the ODO.
Providing information about the activities, timeline, and processes of donation is important to clarify the mutual understanding of the ODO, ICU, and family. Exploring the family’s expectation about their role in donation can enable planning and modification of the donation process to match family preferences. For example, some parents may want to accompany their child to the operating theater and even hold their child after organ recovery has occurred. Reasonable provisions should be made to accommodate parental requests. Palliative care teams, social workers, chaplains, and psychologists can assist the critical care team, parents, and families facing the death of their child while assisting with the organ donation process (36, 37).
PEDIATRIC DONOR MANAGEMENT
Once a decision to pursue organ donation has been confirmed, donor management is essential to optimize organ recovery. Management of the NDD and the DCD donor will differ and is discussed separately. Preserving and optimizing organ function are prioritized in the NDD donor. Meticulous physiologic management of the donor organs compliments concurrent supportive emotional, social, and spiritual care of the family. Appropriate donor management includes ongoing evaluation of organ suitability, serial organ function assessments, viral screening, immunological testing, size matching, allocation, and surgical retrieval logistics. The goal of donor management is to restore normal physiologic function of organs to recover more organs with improved quality for transplantation (10, 38–40). Commonly used donor management goals are listed in Table 1. The active engagement of the ICU team brings understanding of the unique aspects of medical, emotional, and psychologic needs of dying children and their grieving families (10, 41, 42).
After NDD, medical care of the donor includes comprehensive assessment and active management of a multifactorial shock state. During neuroprotective phases of care, hypovolemia is common, due to fluid restriction, osmotic diuresis, and development of diabetes insipidus (DI). After NDD, volume resuscitation to restore euvolemia and management of DI should be initiated with urine replacement, antidiuretic hormone, and/or vasopressin. Correction of hypernatremia is recommended as it has been associated with worse liver transplant outcomes in adults, although this may be less important in children (44, 45). After brain death is confirmed, rapid shifts in serum sodium do not pose harm to the donor.
Cardiovascular instability related to herniation and associated short-term catecholamine depletion can be managed with inotropes and volume resuscitation. Invasive cardiovascular monitoring combined with clinical examination and serial biochemical evaluations can assist the provider in caring for the donor. Hormonal replacement therapy (HRT) can reduce circulatory instability associated with thyroid and cortisol depletion. Use of high-dose corticosteroids, vasopressin, insulin, and thyroid hormone (triidothyronine [T3] or thyroxine [T4]) is commonly used in donor management. Large retrospective adult cohort studies suggest increased organ utilization when HRT is used as part of donor management (40, 46, 47). Use of HRT in pediatric donors can reduce the need for inotropic support (48). Neurogenic myocardial dysfunction, with or without neurogenic pulmonary edema, may occur and is usually reversible with inotropic support, positive end-expiratory pressure, and time (49).
Cardiac arrest may be treated as part of active donor management process in patients after NDD (50). Using extracorporeal support for the brain dead donor has also been considered in extreme cases and has included dialysis for fluid removal and electrolyte correction. Using extracorporeal support to limit warm ischemic time for DCD donors should be avoided as reestablishing anterograde circulation negates death determination (51).
Lung injury may be multifactorial and should be managed with protective ventilation and lung recruitment maneuvers including positioning and suctioning (52). Presumed or proven infection should be investigated and treated.
Improved organ utilization and graft function include goal-directed donor management and normalization of organ system markers (53). Families and staff should be prepared for a period of 12–36 hours, or longer in some cases, from consent/authorization for donation to transfer to operating theater for organ recovery. Emotional and psychosocial support for families should be continued throughout this period and should be customized to the evolving needs of each family.
In some ICU’s transferring patients to a specialized end-of-life care room can provide a more private experience for the family, although this can be challenging if the child is unstable.
Considerations should be made on case-by-case basis, and local leaders may consider opportunities to modify ICU layout to support high-quality end-of-life care for children awaiting the opportunity to contribute organs. Further considerations for determining a location for end-of-life care are addressed in “Logistics of withdrawal of life sustaining therapies in PICU” in this supplement.
Donor management in DCD is different than that of NDD. Prior to withdrawal, comfort measures are titrated to the palliative goals established for the child. Specific donor management begins with withdrawal of life-sustaining treatments, includes provision of palliative treatments and ends with death determination based on cessation of circulation or determination that the donor is ineligible.
Parents and families should understand and be prepared for a rapid separation from their child once death has been declared. Preidentified team members should continue to support the family as organ procurement proceeds. The location of withdrawal will influence the logistics of where this care occurs, as will plans for family to see the child immediately after donation.
Withdrawal of life-sustaining medical treatments can occur in the ICU, in an area outside of the operating theater or in the operating theater itself. The location of withdrawal requires coordination with operating room staff and the ICU team to minimize warm ischemic time that can impact organ function from DCD donors and to minimize disruption in the operating suites. This should be discussed with families and other relevant stakeholders.
After withdrawal of life-sustaining therapies, the patient and their organs will be subject to hypoxic-ischemic injury. Families and staff should understand that there are specific time limits that impact warm ischemia time and organ recovery that may preclude successful organ donation. Many ODOs use a 60-minute circulatory arrest time limit for recovery of kidneys and lungs and 30 minutes for liver recovery. Some ODOs have extended the circulatory arrest time limit for kidneys to 90 minutes. The details should be discussed with the ODO and shared across the entire medical and surgical team. The medical team must be prepared to provide ongoing end-of-life care and have a place for ongoing care immediately available should the child not expire within the required time period for organ recovery. Parent and family support should be continued.
With informed consent/authorization, heparin may be given antemortem to reduce the risk of thrombosis as a result of altered perfusion during the dying process (33). Heparin is used in some jurisdictions and is administered according to specific ODO protocols. Use of antemortem heparin can be discussed with the ODO to determine beneficial effects if there are provider concerns.
Additional postmortem interventions, including normothermic regional perfusion, and other forms of ex vivo extracorporeal support have shown promising outcomes when used in adult donors (54, 55) and may have future application in pediatric donation.
In many medical facilities, a moment of silence is observed in the operating theater prior to organ recovery, to honor both the organ donor and their family for their gift. This process has enhanced donation awareness and been associated with an increased donation (56). Recognition of the donor and their family focuses the entire medical and surgical team on the importance of donation to save additional lives. This acknowledgment can assist staff with emotional distress while emphasizing that some good emerged from the death of a child.
Many ODO’s follow up with the donor family with anonymous information about recipients while acknowledging the gift of donation. A thank-you letter from the ODO and information about recipients may be important for bereaved families who wanted more support following the donation process (57) in addition to the bereavement and follow support from the ICU as discussed in “Caring for Parents after the death of a child.” Additional research in this area will further our understanding and improve outcomes of the donation experience for future families (1, 3).
Many institutions include review of the organ donation process with regular operational or quality review meetings. ODOs routinely follow up with the ICU team to express appreciation, to explore opportunities to improve process, and to provide information about organs recovered and transplanted. Formal debriefing sessions or support programs, support from coworkers, sharing donation outcomes with staff, and remembrance ceremonies to honor donors and their families may be useful for staff who cared for a deceased donor and their family (58).
Program-level considerations include local policies, education time, and development of local champions, leadership, and regular interactions with the ODO. Institutions must consider the implications of the need to balance the technical aspects of organ recovery with high-quality end-of-life care and should work to develop physical spaces, policies, and accepted practices to enable concurrent bereavement and organ donation process (59).
Education of hospital providers including physicians, nurses, respiratory therapists, chaplains, and other ancillary staff is essential to support donation (Table 2). Effective education supports coordinated and collaborative donation process with the ODO, allows frontline ICU staff to demonstrate comfortable familiarity with the donation process, and thus reinforces the family’s confidence in the ICU team.
Education can be provided in multiple formats (Table 2) and are mandated by regulatory agencies in some jurisdictions. A hospital organ donation committee can provide ongoing education and special programs that focus on donation education, while overseeing quality improvement and innovations in donation process—including ex vivo organ support, neonatal donation, and normothermic regional perfusion (15, 55). Advance planning, staff education, and simulation involving operating theater staff can increase comfort and expertise with the DCD process and consolidate the sharing of expertise between teams to overcome the relative infrequency of exposure to the process (57, 60).
Preserving the option to donate and the process of organ donation are important parts of end-of-life care in the PICU. Organ and tissue donation can offer consolation, create a sense of legacy, and give positive meaning to a child’s death. Restoration of normal organ function results in better quality organs being recovered and improves transplantation outcomes.
Navigating the dual requirements of high-quality bereavement care and organ optimization requires the expertise of a multidisciplinary ICU team skilled in the unique needs of caring for children and their families and collaboration with ODO. Organizational policies and procedures compliment the expertise of the well-prepared ICU-team and other involved services. Education can strengthen expertise, and comfort with donation at end of life, and is important to support introduction of new innovations. Increasing frequency of DCD highlights the need for well-considered approaches to donation, family support and staff preparation that involve local leadership, and supportive policies and procedures.
Organ donation saves lives and, for the families of donors, provides the tangible and persisting knowledge that the death of their child has contributed to the well-being of others.
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