DCD

The unique circumstances that impact the process of pediatric and neonatal DCD

Fact-Finding Questions Hospital Leadership Should Ask

1. Does our hospital organ donation policy address the neonatal and pediatric DCD process?
2. Do we need a pediatric and neonatal-specific clinical trigger to facilitate the identification of all potential donors, including DCD potentials?
3. How will the organ procurement organization (OPO) and the hospital patient care team collaborate to ensure a cohesive, timely, and sensitive process for the donation conversation every time, including appropriate personnel and integration of organ donation into end-of-life conversations?
4. Are we set up with automated OPO notifications of potential donors from our electronic health record (EHR) system? (see Essential 2)
5. How are we meeting the families’ cultural and religious needs throughout their child’s care?
6. What is our process for the facilitation of a pediatric DCD case at our institution?
7. Do we have a pediatric DCD donor management standard order set developed with the help of the OPO?
8. Are donation cases prioritized as urgent cases on the Operating Room (OR) schedule?
9. Do we have a critical care comfort care order set that can be used for all end-of-life (EOL) care patients undergoing comfort care and can also be used for DCD cases?
10. Do we have patient care physicians or physician designees available and willing to assist with the withdrawal of life-sustaining treatments (WLST) and administration of comfort care at the time of a DCD case?
11. Do we have a well-defined plan to provide appropriate medications for comfort care for a DCD donation case when patients are cared for outside of the ICU setting?

Key Points Hospital Leadership Should Remember

1. Timely identification and notification to the OPO of a potential donor is crucial and allows for better family care and communication.
2. Ongoing patient management by the hospital patient care team is essential to sustain organ perfusion and viability and is crucial to the stewardship of the gift the family is making.
3. Organ donation should be a routine consideration as part of end-of-life care.
4. The determination of donation potential must be made by the OPO team.
5. The donation conversation should be done in collaboration between the OPO coordinators and hospital patient care team.
6. Collaboration between the OPO team and hospital patient care team for donor management will optimize the stewardship of the gift. But, in DCD donation, only the hospital patient care team can order specific tests and treatments for the potential donor prior to pronouncement of death.
7. After Action Review (AARs) provide an opportunity for hospital staff to debrief and share feedback after DCD cases.

The Need for Pediatric Donors

Children continue to die while waiting for lifesaving organ transplants (see Figure 10-1). The number of children added yearly to the organ transplant waitlist far exceeds the number of pediatric donors annually (see Figure 10-2). Pediatric organ donation – defined as organ donation from an individual who is newborn up to the age of 18 – can have a significant life-extending benefit to the recipients of these organs and may additionally have a high emotional impact on donor families, allowing them to find a sense of purpose and comfort in their loss.¹

Figure 10-1. The number of pediatric transplants vs the number of pediatric waitlist deaths through 2024²

Figure 10-2. Pediatric waitlist additions in comparison to pediatric transplants per year through 2024²

The majority of pediatric organ donors continue to be donors after declaration of brain death/death by neurologic criteria (BD/DNC) (see Figure 10-3).  The need to identify all potential pediatric donors and recover more organs for pediatric patients waiting for organ transplantation is essential. This has resulted in a steady increase in the identification of pediatric DCD donors (see Figure 10-3) contributing to 3-4% of the national DCD pool of donors in the United States and increasing pediatric transplants annually.²

Figure 10-3. Comparison of Pediatric Brain Dead to DCD Donors Through 2024²

Unique circumstances affecting pediatric donation

• Most critically ill children are cared for at specialized pediatric medical centers.
• Diseases in children can be dependent upon the age of the child and can differ from adult diseases.
• Neurologic or circulatory death is a relatively rare occurrence in children, accounting for 2-6% of all critically ill hospitalized children in PICUs in the United States.³
• The majority of pediatric deaths occur following withdrawal of life-sustaining medical treatment (WLST).
• Parental authorization for donation and consent for any procedure is required; children (unemancipated minors) cannot be independent decision makers. While children can designate themselves to be donors (usually at driver permit age or earlier), the final decision for donation remains with the parents until legal adulthood. In some states, a guardian may be able to be the final decision-maker for a child; however, it is important to note that, in most states, it is only the parents who can change the child’s decision to be a donor. (Visit each state’s Uniform Anatomical Gift Act [UAGA] for specifics.)
• Recovery of smaller organs from pediatric donors requires surgical expertise.
• Utilization of organs donated from pediatric donors may be limited by size and weight constraints.

Model Elements for Pediatric DCD Within the Hospital

Identification of a Potential Pediatric DCD Candidate

Notification to the OPO is required for potential pediatric organ donation candidates when clinical triggers are met.^4,5 Clinical triggers for adults and children are similar. The OPO should be notified as soon as possible when a patient meets one of these clinical triggers:⁶

• Requires mechanical ventilation; AND
• Exhibits clinical findings consistent with a Glasgow Coma Score that is less than or equal to a mutually-agreed-upon threshold; or
• Loss of a mutually-agreed-upon number of brainstem reflexes; or
• MD/DOs are evaluating a diagnosis of BD/DNC; or
• An MD/DO has ordered that life-sustaining therapies be withdrawn, pursuant to the family’s decision.
• A family who is beginning discussions of withdrawal of life-sustaining treatments (WLST)
• A family who initiates a conversation about donation.

Notification to the OPO for evaluation for organ donation should occur for every patient meeting one of the triggers listed above, regardless of their medical condition. After discussion with the hospital patient care team and after reviewing the patient’s complete medical history and current medical course (see Essential 3), the OPO will determine medical suitability for donation. Due to the ever-evolving landscape of transplantation practices, determining the medical suitability for donation and the utilization of organs from a donor will vary based on the case, specific circumstances, the patient’s condition, and advances in technologies and practices. The earlier the hospital notifies the OPO, the more time the OPO has to prepare for the donation conversation should the patient deteriorate to BD/DNC or the family makes the decision to pursue WLST (see Essential 2).

It is important to appreciate that timely notification of the OPO when a patient meets clinical triggers has no impact on the hospital care teams treatment of the patient. Some patients who meet the clinical triggers and are referred to the OPO will improve and are successfully discharged to home. Additionally, the misconception that notification of the OPO by the hospital will lead to an OPO/family conversation about organ donation exists but is incorrect. This is not the purpose of the OPO notification process. The timely notification to the OPO, which is commonly referred to by the OPO as “a referral,” allows the OPO to partner with the hospital patient care team to better prepare for the family and ensure that in situations where the patient may not survive, the opportunity for donation is preserved.

Benefits of an Automated Notification Process

One method to facilitate timely notifications to the OPO is to institute automated donor referrals (notifications) through an interface engine between the hospital EHR and the OPO. (see Essential 2). This process will assist the hospital to remain in compliance with the Centers for Medicare & Medicaid Services CMS) Conditions of Participation (COPs).^4,5 Automated donor notifications increase cost-effectiveness by reducing hospital staff time with manual telephone notification and call backs by the OPO; reduce the potential of human errors in missing patients that meet clinical triggers; may reduce length of time an intensive care bed is needed for a donation case; and may increase staff satisfaction by freeing their time to allow them to focus on their patients.⁷

Patient Management

Children are best cared for in a pediatric facility with a hospital patient care team that understands the unique needs of children and their families. Children can be medically treated and survive illness despite OPO notification when clinical triggers are met. Additionally, preserving the opportunity of donation through continued medical management provides a family who chooses to donate with a sense of hope, purpose, and comfort in their loss,¹ and it provides a greater chance for a life-saving transplant to those children in need. It is important to note that preserving the opportunity for donation does not conflict with best patient care, as the medical interventions required to preserve the opportunity for donation are the same measures required to give a patient the greatest chance of survival.

Preserving the opportunity for donation means:

• Medical treatment should continue until decisions regarding EOL care, including the plan for donation, are established.
• Discussions between the hospital patient care team and the OPO regarding donation potential should occur and a collaborative plan made in order to serve the family in the best way possible.
• An established plan of care with treatment goals should be determined for children at EOL.
• Involvement of a Palliative Care specialist or team is encouraged and recommended.

It is best to have a well-established hospital DCD policy and procedure that outlines the necessity of preserving the opportunity for donation and other parts of the process: identification and notification of the potential DCD donor (Essential 2), evaluation of the DCD potential (Essential 3), the donation conversation (Essential 4), and donor management of the DCD donor (Essential 5).

Evaluation of Pediatric DCD Potential

Potential criteria for pediatric DCD organ utilization will evolve over time as modern medicine and technology continue to advance. It may also vary based on specific recipient needs and surgeon practices. Enhanced hospital collaboration with their OPO is critically important, as OPO staff are aware of the most current donation criteria and needs.

In the optimal process, the patient care team will continue medical treatment of the patient to preserve the opportunity for donation, even in situations where there appears to be little to no chance of meaningful recovery. The trajectory of organ function will change during the course of hospitalization, depending on medical management.

During the same time, the care team holds a collaborative discussion with the OPO to determine donation opportunities. There may be circumstances where the patient will not be a donor candidate based on specifics of the individual case. This information is best provided by the OPO after after a thorough review of the specific patient data and a conversation with the hospital patient care team. Including the hospital patient care team in the discussions with the family reinforces collaborative care and minimizes the potential for misunderstandings.

In most DCD cases the kidneys and liver will be recovered for transplant; if they appear viable, the lungs and heart may also be recovered for transplantation. In addition, certain developing technologies are increasing the likelihood of additional organs being recovered and transplanted from DCD donors. (See the Introduction to and Background on Organ Donation & Transplantation and Essential 8 for more details.)

The OPO staff will ensure early and proactive communication with the ME/C to collaborate on the release of donation. In cases of DCD potential, the OPO typically notifies the ME/C of the pending death to inquire about any requirements that would facilitate the release of organs for transplant once the patient’s actual death has occurred. According to the National Association of Medical Examiners (NAME),⁸ the collaboration between ME/Cs and OPO is encouraged to allow for both organ recovery and forensic investigations; however, NAME does not endorse or promote any specific protocols. In some states, the UAGA will have specific directives for the role of the ME/Cs. (See Essential 9 and review each state’s UAGA for these specifics.)

Authorization for Donation

According to the Report of a National Conference on Donation after Cardiac Death⁹ and the American Academy of Pediatrics,¹⁰ in which ethical considerations and recommendations for DCD were established, authorization for donation should only occur after a decision to WLST has been established or when a family initiates conversations about donation.

It is vital to remember that the donation decision could provide the family with a sense of hope, purpose, and comfort.¹  The presentation of the donation potential should therefore be carefully and sensitively planned and presented. The worst-case scenario is a family regretting their final decision. Unfortunately, every OPO has stories of families who have regretted their decision to decline donation. Those families then experience that added loss in addition to the loss of their family member.

Preparation for the donation conversation should include the following:

• A collaborative approach to the donation conversation involving both the physician and the OPO has been demonstrated to enhance authorization rates.^11,12 While CMS designates an OPO representative or a trained designated requestor as the one to initiate the request for donation to the patient’s family,^13,14 it is highly recommended that the OPO and hospital patient care team collaborate to determine the best time, best place, and best manner for introducing the donation opportunity to the grieving parents or family.¹⁵
  • Everyone’s role in the donation conversation should be established. For example, the physician discusses the medical details and diagnosis and transitions to the OPO coordinator (typically the OPO family care coordinator), who introduces donation and helps to address the donation-related questions.
• In complex circumstances (e.g., challenging family dynamics, high profile situations, etc.), some institutions may require involvement of the ethics committee.
• Further elements of the preparation should include:
  • Determining the family’s preferred language and the need for using a medical interpreter. (Avoid using family members for interpreting.)
  • Identifying the family’s cultural dynamics and cultural decision-maker. The cultural decision-maker may not be the same person as the legal decision-maker in the UAGA hierarchy. It is very important to build trust with the cultural decision-maker and include them in the family conversations, as they will be the ones that influence the family’s decision.
  • Establishing that the decision-maker according to the UAGA hierarchy of decision makers is present and if not, making documented efforts to locate them.
  • Establishing that the family’s basic human needs have been met (e.g., food, hydration, rest). Sometimes it might be necessary to ensure those needs are met as best as possible prior to the EOL and donation conversation.
  • Honoring the family’s religious needs and providing spiritual support as desired by the family.

(See Essential 4 for more details about the donation conversation.)

Content of donation conversation with the parents and family may include:

• The process of WLST:
  • Where WLST will occur.
  • Who will be involved with the WLST.
  • Provision of comfort measures, including medications and ongoing patient monitoring.
  • The need for any additional procedures for the purposes of organ recovery.
  • What happens when circulatory death occurs, i.e., if WLST occurred in the ICU or alternate area, the patient will immediately be moved to the OR suite; if WLST occurred in the OR, the family will have to immediately leave the OR suite.
• WLST may need to be delayed after donation is authorized:
  • Specific laboratory, imaging studies, and procedures may be required to determine viability for donation and recovery of organs.
• Process to determine death, including procedures that might be required to meet current medical standards:
  • Antemortem medication administration and interventions that may be undertaken for the purpose of organ recovery.
  • Arterial cannulation and monitoring to determine time of circulatory death.
  • Which organs may potentially be viable for recovery.
  • Organ recovery or transplantation cannot be guaranteed. There may be unknown factors that are not evident during the donor management phase (e.g., the patient may take too long to die or some previously undetected disease processes is found).
  • If death does not occur within the time frame needed for organ viability for transplant, organ donation will no longer be an option. However, tissue and eye donation may still be a possibility after death.
  • Provisions for ongoing care, if the organ donation process is abandoned.
  • The plan for EOL care if donation is not authorized.
  • Authorization for donation can be withdrawn at any time prior to incision for organ recovery or before the recipient has undergone invasive procedures in preparation for transplant. (See each state’s UAGA for further details.)
    

Family declines donation:

If the family declines organ donation, ongoing care in the ICU or other hospital pre-designated area (e.g., medical-surgical floor or another non critical care unit) is provided for the patient and family and the usual WLST and EOL protocols will be followed.

Family authorizes donation:

If the family authorizes organ donation, authorization paperwork must be completed and the OPO will provide the hospital with a copy for the patient’s chart. The OPO will then conduct an extensive medical-social interview with the family to assess the patient for any factors which may have put the organs at risk. Donor management and organ allocation will begin after the paperwork has been completed.

Donor Management of a Pediatric DCD Donor

Unlike in BD/DNC donor cases, potential DCD candidates require ongoing medical management prior to the death of the patient. The patient remains under the care of the primary hospital patient care team with all orders being written by that team. The OPO will collaborate with the hospital patient care team to communicate any donation specific needs to optimize and steward the gift of donation (see Essential 5 for specific needs). A practice that can help to facilitate a smoother donor management process is to institute a DCD donor management order set. Having a standard DCD order set improves hospital efficiency and ensures a more timely distribution of orders to the various ancillary departments.

Donor patients require many tests, procedures and extensive nursing resources, and should be staffed appropriately to provide optimal and efficient patient care.

Pre-mortem interventions are necessary for donation purposes. Those interventions include line insertions, potential procedures to evaluate organ viability, e.g., laboratory tests, imaging (chest x-rays and computerized tomography), bronchoscopy, and drug administration, in particular a high dose of Heparin may be administered during the WLST. Heparin is administered to prevent micro-emboli/thrombi formation and protect the organs during the dying process. While these interventions do not serve to benefit the patient, they may pose a risk to the patient, therefore, most states require that the hospital patient care team obtain an informed consent from the family for these interventions. This is also an ethical recommendation by the National Academies of Medicine (formerly Institute of Medicine).¹⁶

Preparation for WLST and DCD

Preparing for WLST at EOL requires extensive collaboration between the family, the hospital patient care team, the OPO recovery team, and OR staff. Other specialists such as Palliative Care and spiritual support become important for families and the medical team. Providing relief of pain and suffering while making the patient comfortable requires administration of analgesic and sedative medications. The family should be prepared for what they may observe once extubation occurs. Child life specialists can be helpful to support siblings during this process.

Location of WLST

The location of where WLST will occur must be determined prior to it’s initiation. Appropriate support services must be available if WLST will occur outside of the ICU. An OPO coordinator, usually the OPO family care coordinator who is specialized in caring for grieving families, will remain with the family during WLST and will escort the family through the logistic processes; however, the nurse caring for the patient and a physician will also need to be present to manage the WLST process. It would be an ethical conflict for the OPO staff or anyone from the transplant recovery team to administer comfort care or participate in the process, hence, the clinical care of the patient must remain under the hospital patient care team’s purview.

If WLST is to occur outside of the ICU, provisions for ongoing comfort care must be arranged if the child does not die within the specified time period for DCD. Ongoing comfort care may not require an ICU bed as no aggressive measures will be reinstituted; however, comfort care continuity with the same nurses may be helpful to the family’s grief. (See Essential 7 & 9 for more details.)

Preparing the OR

Collaboration with the OR team is essential. The OPO coordinators will prepare and educate the OR team on the DCD process. It is important to recognize the emotional impact to the OR team of witnessing WLST occuring in the OR, particularly when the donor is a child. Detailed communication about the WLST and EOL plan that will be conducted in the OR must occur to ensure all necessary medications are available for comfort care and that everyone understands their role. The plan for how to appropriately monitor the patient to determine circulatory arrest must be made with the declaring physician. (See Essential 7 for more details.)

Coordinating the OR availability can be a challenge. The OPO coordinator has to coordinate the schedules of all of the recovering transplant surgeons with the declaring physician, as well as the hospital’s OR availability. If the OR has limited availability, this can add time to the process, delay the WLST, prolong the need for an ICU bed and staff, and potentially risk the loss of organ viability. It is recommended that the hospitals consider categorizing donor cases as “urgent cases” to facilitate the expedited scheduling of OR times.

Safeguarding against potential conflicts of interest

• No one from the OPO recovery team or transplant recovery team can declare the death of the patient. The declaration of death must be performed by a hospital physician or physician designee (if allowed by state law and hospital policy).
• Comfort care must be administered by the physician or a physician designee and nurse as per usual comfort care measures as for all EOL care patients. DCD patients should not be given different dosages (more or less) than what would be normal practice.
• The transplant recovery teams must be present at the hospital and ready for surgery, but should be physically separated from the patient during the dying process and until death has been declared (see Essential 7).

Determination of Death

Once WLST has occurred, the patient is monitored for loss of pulse pressure (mechanical asystole). It is ideal to have an arterial line in place to continuously monitor blood pressure. If an arterial line is not being utilized, echocardiography demonstrating that there is no flow across the aortic valve is a reasonable alternative to determine loss of pulse pressure. Palpation of the pulse without arterial waveform documentation or echocardiography is much less reliable and not recommended. Electrical activity of the heart may continue after loss of pulse pressure and does not indicate circulation, meaning that the sole use of an EKG is not adequate to make determination of death^17,18 (see Essential 7 for more details).

• Once loss of pulse pressure occurs, the child is monitored for return of spontaneous circulation (autoresuscitation).
• The “observation period” or “hands-off period” should be observed in accordance with hospital and OPO guidelines or policy. The typical “hands-off period” is 5 minutes.¹⁶
• If there is no return of spontaneous circulation during the observation period, the child is pronounced dead. The death will be reported to the ME/C if required. Assuming ME/C release, the recovery of organs can follow.

The waiting period from WLST until death occurs will affect organ recovery and be determined by:

• Medical viability of the organs, the transplant surgeon, and is organ dependent. (For example, transplant surgeons may deem a liver no longer medically viable beyond a specific warm ischemic time (WIT), whereas the acceptable WIT for kidneys may differ significantly.)
• If organ perfusion and preservation techniques and devices are utilized, time frames may also change. The time periods will be determined by each transplant recovery team prior to the organ recovery and will be shared with the hospital personnel participating in these situations on a case-by-case basis.
• Length of WIT and cold ischemic time (CIT). (See Essential 7 for more details.)
  

DCD Organ Recovery

• Once circulatory death has occurred in accordance with hospital and state regulations, organ recovery can occur. If WLST occurred in an alternate location to the OR suite, the patient will be moved to the operating suite during the “observation period” or “hands-off period.” If WLST occurs in the operating suite, the transplant recovery teams enter the OR suite after circulatory death is determined and the family has left the suite; the surgeons will then begin their organ recovery process. The OPO will leave a copy of the operative note for the patient’s chart with the OR nurse.

  Following organ recovery

  Some families will remain in a holding area during the organ recovery process. Following organ recovery, the family should be allowed time to grieve and spend time with their child. Appropriate emotional support should be provided for the family. Typically, the OPO’s family care coordinator will remain with the family. The hospital may consider having additional hospital family support available.

Neonatal DCD

A smaller percentage of the pediatric DCDs is the neonatal population.¹⁹ As with adult and pediatric patients, the majority of deaths that occur in neonatal ICU’s follow WLST and circulatory death. There has been success with neonatal organ recovery, specifically en bloc kidney transplantation²⁰ and liver cell transfusion therapy.²¹ Neonatal heart recovery and transplantation may be an option in a small percentage of patients.²²

Neonatal DCD comes with significant challenges that need to be addressed:

• Determination of death can be challenging in neonates.
• Size and weight constraints limit the allocation of organs for transplantation.
• Technical expertise of organ recovery and transplantation is required.

Considerations for neonatal DCD:

• Neurologic death in neonates is a rare event.
• Neurologic death can be declared in term infants (37 weeks gestational age and older).
• Neonates, like older children and adults, can be tissue and eye donors.
  • Recovery of heart valves serves an important source of tissue for correction of complex congenital heart disease.
• Anencephalic infants could potentially be organ donors.^23,24
  • • BD/DNC cannot be declared in anencephalic infants. These infants would therefore be DCD donors and organs are recovered following circulatory death.
    • These patients require intubation followed by extubation after EOL and organ recovery have been coordinated.

Ethical Considerations

Pediatric DCD is a medically supported and ethically viable pathway to recover organs from children. Pediatric DCD is supported by the American Academy of Pediatrics²⁵ and other medical organizations.

Important ethical considerations for pediatric DCD:

• Organ donation should be routinely included into EOL care.
• The decision to donate organs from children is a parent or legal authorizing party’s (LAP) decision. Each state’s UAGA outlines the order of potential decision makers for donation.
• The first and foremost consideration is the comfort provided to the patient at EOL. Organ recovery can never take precedence over patient care. Comfort care medications should follow normal hospital protocols.
• WLST cannot be influenced by donation. The decision for donation must occur following the decision to pursue WLST.
• Antemortem interventions are ethically acceptable to preserve the opportunity for donation and to facilitate the stewardship of the gift. However, it is important to note that these interventions:
  • Provide no benefit to the potential donor;
  • Should not be conducted to hasten death;
  • Should not have more risk to the patient than routine care in the ICU.
  • Require parental or guardian consent.
• If DCD cannot be accomplished due to a lack of a hospital policy, a pathway to honor the family’s wishes for donation should still be pursued through alternative mechanisms, such as enrolling the patient as a donor-in-spirit and providing appropriate aftercare and recognition.
• The OPO recovery team and transplant recovery team cannot be involved with the decision to WLST, nor can they be involved in administering comfort care or determining the death of the patient. They can be involved with providing specific information about the entire DCD process and in obtaining authorization for donation.
• Provisions for continued comfort care must be made in case the pediatric DCD candidate does not die within the specified time period for organ recovery to occur.
• It is beneficial for the hospital patient care team and OPO staff to conduct an AAR for all involved to evaluate and identify future potential improvements, as well as to acknowledge those processes that worked well and should be incorporated in future cases. (See Essential 9 for more details.)