“…Traditionally, there are four potential goals for ECMO use: as a bridge to recovery, device, or transplant, or as a bridge to decision regarding one of these alternatives ( 47 – 49 ). Outside these parameters, continuing ECMO leads to death in the ICU within days to months, so is felt to be a prolongation of support that has no clinically beneficial outcome ( 16 , 19 , 26 , 47 , 50 , 51 ). In current practice, with no long-term or home “destination” therapies yet available, it has often been referred to as a “bridge to nowhere” ( 21 , 52 – 55 ).…”
Section: Ethical Analysismentioning
confidence: 99%
“…In current practice, with no long-term or home “destination” therapies yet available, it has often been referred to as a “bridge to nowhere” ( 21 , 52 – 55 ). Defining acceptable ECMO use in children with irreversible cardio-respiratory failure and no bridging options is challenging at baseline with limited published guidance ( 26 , 32 ), but is especially difficult when patients are neurologically intact ( 16 , 17 , 19 , 56 ). As a pluralistic society, there are multiple ethically reasonable ways to approach a given situation.…”
Section: Ethical Analysismentioning
confidence: 99%
“…As a pluralistic society, there are multiple ethically reasonable ways to approach a given situation. Recent ethical analyses focus on withdrawal of ECMO in awake adolescents/adults over their dissent which is uncommon in pediatric ECMO ( 16 – 19 , 56 ). A comprehensive exploration of pediatric ethical issues using varying ethical frameworks and lenses is critical to ensure that rationales for decisions are robustly constructed ( 17 , 18 , 23 , 55 – 57 ).…”
Section: Ethical Analysismentioning
confidence: 99%
“…Thus, this technology could contradict strict interpretation of the UDDA definition that complete, irreversible failure of the native heart or respiratory system functions constitutes death. A person who still has neurologic function (even if heavily sedated) is clearly neither intuitively or clinically dead, highlighting the challenges of the UDDA definition in light of modern technology ( 16 – 18 ). Though death during the hospitalization is certain as indefinite support is not feasible, arguably despite irreversible cardiorespiratory failure they are living on ECMO ( 19 )—essential processes are maintained by a machine.…”
Section: Introduction: Ambiguity Defining Death—lessons From Death By...mentioning
confidence: 99%
“…Both sets of circumstances highlight the difficulties—in both terminology and societal consensus—that occur with defining death as our technologic ability to support patients expands. ECMO support will inevitably result in some cases where the only thing ECMO achieves is delaying death, so considering such cases will be important in clinical care ( 16 ). We argue that lessons learned from DNC may apply in these ECMO cases and warrant a stakeholder-approved approach to exploring the novel use of therapies in children such as ECMO in the setting of irreversible cardiorespiratory failure that cannot be managed by means such as transplant or assist devices.…”
Section: Introduction: Ambiguity Defining Death—lessons From Death By...mentioning
IntroductionAdvances in medical technology have led to both clinical and philosophical challenges in defining death. Highly publicized cases have occurred when families or communities challenge a determination of death by the irreversible cessation of neurologic function (brain death). Parallels can be drawn in cases where an irreversible cessation of cardiopulmonary function exists, in which cases patients are supported by extracorporeal cardiopulmonary support, such as extracorporeal membrane oxygenation (ECMO).AnalysisTwo cases and an ethical analysis are presented which compare and contrast contested neurologic determinations of death and refusal to accept the irreversibility of an imminent death by cardiopulmonary standards. Ambiguities in the Uniform Determination of Death Act are highlighted, as it can be clear, when supported by ECMO, that a patient could have suffered the irreversible cessation of cardiopulmonary function yet still be alive (e.g., responsive and interactive). Parallel challenges with communication with families around the limits of medical technology are discussed.DiscussionCases that lead to conflict around the removal of technology considered not clinically beneficial are likely to increase. Reframing our goals when death is inevitable is important for both families and the medical team. Building relationships and trust between all parties will help families and teams navigate these situations. All parties may require support for moral distress. Suggested approaches are discussed.
“…Traditionally, there are four potential goals for ECMO use: as a bridge to recovery, device, or transplant, or as a bridge to decision regarding one of these alternatives ( 47 – 49 ). Outside these parameters, continuing ECMO leads to death in the ICU within days to months, so is felt to be a prolongation of support that has no clinically beneficial outcome ( 16 , 19 , 26 , 47 , 50 , 51 ). In current practice, with no long-term or home “destination” therapies yet available, it has often been referred to as a “bridge to nowhere” ( 21 , 52 – 55 ).…”
Section: Ethical Analysismentioning
confidence: 99%
“…In current practice, with no long-term or home “destination” therapies yet available, it has often been referred to as a “bridge to nowhere” ( 21 , 52 – 55 ). Defining acceptable ECMO use in children with irreversible cardio-respiratory failure and no bridging options is challenging at baseline with limited published guidance ( 26 , 32 ), but is especially difficult when patients are neurologically intact ( 16 , 17 , 19 , 56 ). As a pluralistic society, there are multiple ethically reasonable ways to approach a given situation.…”
Section: Ethical Analysismentioning
confidence: 99%
“…As a pluralistic society, there are multiple ethically reasonable ways to approach a given situation. Recent ethical analyses focus on withdrawal of ECMO in awake adolescents/adults over their dissent which is uncommon in pediatric ECMO ( 16 – 19 , 56 ). A comprehensive exploration of pediatric ethical issues using varying ethical frameworks and lenses is critical to ensure that rationales for decisions are robustly constructed ( 17 , 18 , 23 , 55 – 57 ).…”
Section: Ethical Analysismentioning
confidence: 99%
“…Thus, this technology could contradict strict interpretation of the UDDA definition that complete, irreversible failure of the native heart or respiratory system functions constitutes death. A person who still has neurologic function (even if heavily sedated) is clearly neither intuitively or clinically dead, highlighting the challenges of the UDDA definition in light of modern technology ( 16 – 18 ). Though death during the hospitalization is certain as indefinite support is not feasible, arguably despite irreversible cardiorespiratory failure they are living on ECMO ( 19 )—essential processes are maintained by a machine.…”
Section: Introduction: Ambiguity Defining Death—lessons From Death By...mentioning
confidence: 99%
“…Both sets of circumstances highlight the difficulties—in both terminology and societal consensus—that occur with defining death as our technologic ability to support patients expands. ECMO support will inevitably result in some cases where the only thing ECMO achieves is delaying death, so considering such cases will be important in clinical care ( 16 ). We argue that lessons learned from DNC may apply in these ECMO cases and warrant a stakeholder-approved approach to exploring the novel use of therapies in children such as ECMO in the setting of irreversible cardiorespiratory failure that cannot be managed by means such as transplant or assist devices.…”
Section: Introduction: Ambiguity Defining Death—lessons From Death By...mentioning
IntroductionAdvances in medical technology have led to both clinical and philosophical challenges in defining death. Highly publicized cases have occurred when families or communities challenge a determination of death by the irreversible cessation of neurologic function (brain death). Parallels can be drawn in cases where an irreversible cessation of cardiopulmonary function exists, in which cases patients are supported by extracorporeal cardiopulmonary support, such as extracorporeal membrane oxygenation (ECMO).AnalysisTwo cases and an ethical analysis are presented which compare and contrast contested neurologic determinations of death and refusal to accept the irreversibility of an imminent death by cardiopulmonary standards. Ambiguities in the Uniform Determination of Death Act are highlighted, as it can be clear, when supported by ECMO, that a patient could have suffered the irreversible cessation of cardiopulmonary function yet still be alive (e.g., responsive and interactive). Parallel challenges with communication with families around the limits of medical technology are discussed.DiscussionCases that lead to conflict around the removal of technology considered not clinically beneficial are likely to increase. Reframing our goals when death is inevitable is important for both families and the medical team. Building relationships and trust between all parties will help families and teams navigate these situations. All parties may require support for moral distress. Suggested approaches are discussed.
Purpose
To develop physician recommendations for communicating with families during pediatric extracorporeal membrane oxygenation (ECMO) in Canada and the USA.
Methods
We used the Delphi methodology, which consists of 3 iterative rounds. During Round 1, we conducted semi-structured interviews with each panelist, who were pediatricians from the USA and Canada from the following pediatric specialties: intensive care, cardiac intensive care, and neonatology. We then used content analysis to code the interviews and develop potential recommendations. During Round 2, panelists evaluated each item via a Likert scale as a potential recommendation. Before Round 3, panelists were provided personalized feedback reports of the results of Round 2. During Round 3, panelists re-evaluated items that did not reach consensus during Round 2. Items that reached consensus in Rounds 2 and 3 were translated into the final framework.
Results
Consensus was defined as (1) a median rating ≥ 7 and (2) ≥ 70% of the panelists rating the recommendation ≥ 7. The final framework included 105 recommendations. The recommendations emphasized the importance of clarifying the goal of ECMO, its time-limited nature, and the possibility of its discontinuation resulting in patient death. The recommendations also provide guidance on how to share updates with the family and perform compassionate discontinuation.
Conclusion
A panel of experts from Canada and the USA developed recommendations for communicating with families during pediatric ECMO therapy. The recommendations offer guidance for communicating during the introduction of ECMO, providing updates throughout the ECMO course, and during the discontinuation of ECMO. There are also points of disagreement on best communication practices which should be further explored.
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