Abstract Recently, Canada became the first country to publish paediatric specific guidelines for the practice of donation after circulatory death (pDCD). These guidelines, endorsed by the Canadian Paediatric Society, were created in response to the fact that pDCD in Canada was largely undeveloped even in tertiary care centres, and no national guidelines addressed the practice in children. This article explains what pDCD is and how these recommendations were developed. In 2013 I met with a father who had just made the horribly difficult decision to withdrawal life sustaining therapy from his daughter. He then asked about organ donation, and eventually I was forced to tell him that no, we would not be able to offer her organs for transplantation. His daughter did not meet the criteria for neurologic determination of death (also known as brain death), and I had no experience with the alternative: donation after circulatory determination of death (DCD). I reached out to colleagues and Transplant Québec, but the system was unprepared to offer the service to this family in need. He knew the importance of transplantation to patients and families in need, and the fact that his daughter’s organs would instead simply be discarded only deepened his grief. At that time, no hospital in the province of Québec had performed DCD in a patient younger than 18. Across the country, only Toronto and Ottawa had active paediatric DCD (pDCD) programs. According to Canadian Blood Services data, pDCD represented only 8% of total Canadian paediatric deceased donation activity in 2014. Besides denying the possibility of mitigating the grief of families who lose their children, this absence of pDCD programs prevented transplantation. Organs donated by children after pDCD expand the overall pool of transplantable organs, bringing lifesaving relief to some of the approximately 4500 Canadians on transplant wait-lists (1). In 2015, 262 Canadians died awaiting a transplant (1). Despite these benefits, pDCD practice was little known, even among Canadian paediatric intensive care physicians. The influential national guidelines governing DCD practice in adults (2) did not specifically mention paediatric concerns, and paediatric intensive care physicians wondered if they could be applied to their population. Many practitioners who did know of pDCD had concerns about whether pDCD could be practiced in an ethical manner, and these debates created an atmosphere where many centres and organ donation organizations were reluctant to consider pDCD as a viable option. In this context I reached out to colleagues to ensure that the next time a family made a similar request, we would be ready to respond to their needs. My intention was to create a local hospital protocol, possibly something I could share with the other paediatric centres in the province. Four years later, after a significant expansion of scope, our group has just published the world’s first national, paediatric specific clinical practice guidelines on how to best practice pDCD (3). These guidelines, sponsored by Canadian Blood Services and endorsed by the Canadian Paediatric Society (CPS), involved us learning a great deal, both about pDCD itself, and about how to develop trustworthy guidelines. I encourage readers interested in the topic to read the scoping review that informed the guidelines (4), the recently published summary version of the guidelines (3), or the full report (www.organsandtissues.ca/s/english- expert/leading-practices-public-awareness-and-education). For those who prefer a brief overview, the next few paragraphs explain some of the most important lessons we learned along the way. Fundamentally, we developed a deeper understanding of what pDCD was, and how it could be practiced ethically. For readers unfamiliar with the topic, Figure 1 provides a basic overview of the procedure, contrasted to how donation proceeds after neurologic determination of death (NDD). Controlled pDCD occurs after a patient’s death is determined by circulatory criteria, which occurs following a planned withdrawal of life sustaining therapy (usually mechanical ventilation). This is in contrast to NDD, where death is determined in the intensive care unit during a brain death exam, but the patient’s body is supported after that determination awaiting organ recovery. Patients become eligible for consideration of pDCD only after a consensual decision to pursue withdrawal of life sustaining therapy has been finalized between the patient’s surrogates and the treating team. We specifically excluded consideration of uncontrolled pDCD which is a form of DCD that happens after an unexpected cardiac arrest, but is not currently practiced in Canada. While pDCD is not limited by underlying diagnosis, the majority of pDCD eligible patients will be those who have suffered substantial, permanent neurologic injury, but do not meet the criteria for NDD. Once the withdrawal decision is finalized, the patient is identified as a potential donor, and the patient’s surrogates can be approached to discuss the possibility of pDCD. If consent is given, and the patient’s organs are deemed eligible for transplantation, planning for withdrawal of therapy occurs in accordance with established practices and policies. Some changes to standard end-of-life care are necessary to permit organ recovery in pDCD, such as withdrawal of therapy in or near an operating theatre, and separation of the patient’s family or surrogates from the patient immediately after determination of death, but the goal is to minimize any deviations from standard end-of-life care. Any changes must be fully explained to the patient’s surrogates, including how they differ from standard end-of-life care. Figure 1. View largeDownload slide Overview of donation process. ID Identification of a potential donor; WLST Withdrawal of life sustaining therapy. Figure 1. View largeDownload slide Overview of donation process. ID Identification of a potential donor; WLST Withdrawal of life sustaining therapy. Once the logistics are arranged, including continual psychosocial support for the patient’s families and surrogates, withdrawal occurs and is followed by progressive hypoxia leading to circulatory arrest. This period of progressive hypoxia is known as the warm ischemic period, and if the patient does not die within a predetermined limit of warm ischemic time (usually around 1 hour, but specific to each organ and transplant program), the organs are considered to have suffered too great an insult to be eligible for transplantation. In that case, the patient is retransferred to the ICU for continued end-of-life care. An important balance in pDCD is awaiting that the period of circulatory arrest is long enough to preclude a spontaneous return of circulation, and short enough to prevent irreversible hypoxic injury to the transplantable organs during the period of absent perfusion. Five minutes of hands-off observation are necessary to confirm permanence of absent circulation, and at that time the patient is determined dead. The family or surrogates are escorted away from the patient, and organ recovery occurs immediately after this determination. Performing pDCD properly requires a well-trained team that is able to cope with multiple medical, logistic and emotional complexities. These complexities include areas of dispute around the ethics of pDCD. Multiple publications exist calling into question whether pDCD can ever be practiced ethically (5–7). They raise important concerns, and force donation physicians and policy makers to carefully consider how to create systems that provide the opportunity to donate while also respecting the foundational ethics around deceased donation. For example, the small number of paediatric intensive care units (PICUs) across Canada creates a reality where children who might be potential donors and children in end organ failure could be cared for in the same unit at the same time. Such a situation could create multiple individual and systemic biases towards organ donation promotion in overt and subtle ways. Of equal importance, any practice of organ donation operates at the intersection of death with life. An operationalized, clear definition of how death, and how to determine a patient has met that definition must be clearly delineated in the context of a DCD program. As the group charged with drafting these recommendations, we carefully considered these issues, and sought out multi-disciplinary input, including from donation focused bioethicists. Our recommendations reflect these deliberations, and we concluded that pDCD can be practiced in a way that respects the Dead Donor Rule (the ethical concept that donors must be dead before organ recovery and organ recovery must not cause their death), respects the dignity of the dying process, and mitigates potential conflicts of interest. But safeguards must be in place, and any program requires continual oversight from hospital ethics committees and all involved stakeholders, including patient representatives. Some examples of our recommendations are included in Table 1, though without the extensive justifications available in the summary and full reports which I encourage readers to explore if they wish to better understand our reasoning. Table 1. Examples of recommendations pDCD is a medically and ethically viable pathway to provide access to deceased organ donation. The option of deceased donation, including pDCD, should be routinely incorporated into end-of-life care. In recognition of diversity of perspectives on pDCD, health care professionals should be allowed to conscientiously object to participation in pDCD. The decision to pursue WLST must not be influenced by donation potential and should proceed according to accepted medical practices. Consent conversations with surrogate decision makers should include the opportunity to discuss beliefs and values around all aspects of pDCD, including death and death determination. The ODO, organ recovery, and transplant team must not be involved in any aspect of management of the dying process. Wherever WLST occurs, surrogate decision makers and other loved ones should be given the option to be physically present with the patient who is a potential donor until the determination of death is complete. pDCD is a medically and ethically viable pathway to provide access to deceased organ donation. The option of deceased donation, including pDCD, should be routinely incorporated into end-of-life care. In recognition of diversity of perspectives on pDCD, health care professionals should be allowed to conscientiously object to participation in pDCD. The decision to pursue WLST must not be influenced by donation potential and should proceed according to accepted medical practices. Consent conversations with surrogate decision makers should include the opportunity to discuss beliefs and values around all aspects of pDCD, including death and death determination. The ODO, organ recovery, and transplant team must not be involved in any aspect of management of the dying process. Wherever WLST occurs, surrogate decision makers and other loved ones should be given the option to be physically present with the patient who is a potential donor until the determination of death is complete. ODO Organ donation organization (e.g., Trillium Gift of Life Network, Transplant Québec); pDCD practice of donation after circulatory death; WLST Withdrawal of life sustaining therapy View Large These recommendations were developed using a rigorous and thoughtful guideline development process. Funding was provided exclusively by Canadian Blood Services, a governmental, not-for-profit entity mandated by the federal government to assist in the development of organ donation best practices. No participant disclosed a financial conflict of interest. The guideline development committee adhered to a process based on the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methods (8) and consistent with recommendations from several national and international bodies (9–11). The recommendations were transparently informed by an extensive scoping review (4), and a forum in October 2014 that was attended by national and international experts in the field. The work was sometimes arduous, but it resulted in consensus recommendations agreed upon by all members of the guideline development committee. As these recommendations become available to a broader audience, I hope they continue to have an impact on pDCD development. Even before their publication, several pDCD programs have begun, with local champions across the country encouraging their hospitals to implement protocols and practices. Paediatric DCD has taken place in Vancouver, Edmonton, Montréal and Québec, places that might not have been able to offer this important aspect of end-of-life care prior to the PICU community coming together around this issue. By continuing to develop a strong Canadian culture of paediatric deceased donation, there is every reason to believe that soon all hospitals caring for critically ill Canadian children will be able to offer this service to families in their time of greatest loss. Paediatric deceased organ donation is complicated and even high volume centres have a low frequency of potential paediatric donors. Enthusiasm for this possibility, however, must be balanced with certainty that best practices are followed each and every time. To do so properly, we must ensure that our recommendations are based on the best analysis of the best available evidence. In doing so, we can help assure that two vulnerable populations, patients on transplant wait-lists and children at the end of their lives, receive the high quality services they deserve. Dozens of people worked to make these guidelines a reality, and I wish I could thank them all. I would be remiss, however, not to mention a few. The process was only possible because Dr Sam Shemie decided to keep mentoring me, as he’s been doing since my second year of residency. Laura Hornby deployed her attention to detail to make sure everything we said was as precise as possible according to the evidence available. Dr Bram Rochwerg taught us everything we know about GRADE methodology. The many other collaborators and committee members who made these guidelines possible are all acknowledged in the aforementioned publications, and I thank them all. Conflict of interest MJW reports grants, personal fees and non-financial support from Canadian Blood Services during the conduct of the study, as well as personal fees received from Transplant Québec, outside the submitted work. References 1. Canadian Blood Services. Organ Donation and Transplantation in Canada - System Progress Report 2006–2015 . Ottawa, Ontario: Canadian Blood Services; 2016: 1– 98. 2. Shemie SD, Baker AJ, Knoll Get al. Donation after cardiocirculatory death in Canada. Can Med Assoc J 2006; 175( 8 Suppl): S1– S18. 3. Weiss MJ, Hornby L, Rochwerg B,et al. Canadian guidelines for controlled pediatric donation after circulatory determination of death—summary report. Pediatr Crit Care Med 2017; 18( 11): 1035– 46. Google Scholar CrossRef Search ADS PubMed 4. Weiss MJ, Hornby L, Witteman W, Shemie SD. Pediatric donation after circulatory determination of death: A scoping review. Pediatr Crit Care Med 2016; 17( 3): e87– e108. Google Scholar CrossRef Search ADS PubMed 5. Joffe AR, Carcillo J, Anton Net al. Donation after cardiocirculatory death: A call for a moratorium pending full public disclosure and fully informed consent. Philos Ethics Humanit Med 2011; 6: 17. Google Scholar CrossRef Search ADS PubMed 6. Devictor D. Organ donation after cardiac death: The subtle line between patient and donor care. Pediatr Crit Care Med 2007; 8( 3): 290– 1. Google Scholar CrossRef Search ADS PubMed 7. Overby KJ, Weinstein MS, Fiester A. Addressing consent issues in donation after circulatory determination of death. Am J Bioeth 2015; 15( 8): 3– 9. Google Scholar CrossRef Search ADS PubMed 8. Andrews JC, Schünemann HJ, Oxman ADet al. grade guidelines: 15. Going from evidence to recommendation-determinants of a recommendation’s direction and strength. J Clin Epidemiol 2013; 66( 7): 726– 35. Google Scholar CrossRef Search ADS PubMed 9. World Health Organization Guidelines Review Committee: WHO. Handbook for Guideline Development, 2nd edition. 2014. http://www.who.int/kms/guidelines_review_committee/en/ (Accessed August 16, 2017). 10. Palda VA, Davis D, Goldman J. A guide to the Canadian medical association handbook on clinical practice guidelines. CMAJ 2007; 177( 10): 1221– 6. Google Scholar CrossRef Search ADS PubMed 11. Schünemann HJ, Wiercioch W, Etxeandia Iet al. Guidelines 2.0: Systematic development of a comprehensive checklist for a successful guideline enterprise. CMAJ 2014; 186( 3): E123– 42. Google Scholar CrossRef Search ADS PubMed © The Author(s) 2017. Published by Oxford University Press on behalf of the Canadian Paediatric Society. All rights reserved. For permissions, please e-mail: firstname.lastname@example.org
Paediatrics & Child Health – Oxford University Press
Published: Feb 1, 2018
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