Staff Perspectives on Organ Donation After Cardiac Death in Children
Staff Perspectives on Organ Donation After Cardiac Death in Children
Objectives: The aims of this project were to describe whether pediatric clinical staff members believe that a donation after cardiac death (DCD) program could be consistent with the mission and core values of a children's hospital and to identify what staff consider essential to the acceptability of such a program.
Design: Qualitative study.
Setting: Children's hospital.
Subjects: Pediatric clinical staff.
Interventions: Data were gathered from pediatric clinical staff during eight focus groups conducted in a children's hospital in March and April 2005.
Measurements and Main Results: Eighty-eight staff members participated. Six major themes emerged from qualitative analysis of the data: a) identifying children who could be candidates for DCD; b) considering the best interests of the dying child; c) approaching parents about DCD; d) preparing parents for their child's DCD; e) doing DCD well; and f) maintaining program integrity. Themes were used to construct a conceptual framework describing a model pediatric DCD program. Pediatric staff voiced numerous concerns. However, they identified making it happen for families who voice a desire to participate in organ donation as the primary reason for program adoption.
Conclusions: This study provides a framework for understanding pediatric staff perspectives on DCD programs in children. Results suggest several possible elements that may be helpful in framing interdisciplinary dialogue and informing institutional practices in the design of a pediatric DCD program.
The disparity between the number of patients awaiting organ donation and the actual number of organs transplanted continues to be a significant health care issue. One strategy to increase the number of organs available for donation is the procurement of select organs from nonheartbeating donors, also known as donation after cardiac death (DCD). The interest in DCD not only is related to the potential increase in organs for transplantation but derives from the requests expressed by families of patients dying from irreversible neurologic injuries when brain death criteria cannot be met.
Few pediatric DCD programs exist, and the orchestration of a child's death with DCD is quite different from what occurs without DCD. First, unlike competent adult patients, who may have an opportunity to express an opinion on organ donation, parents or legal guardians are always asked to provide consent for DCD for their child. Then, depending on the DCD protocol, there may be premorbid procedures and drugs administered that offer no benefit to the child, and may even cause harm or hasten death, and yet are deemed useful for organ protection. Withdrawal of life support usually occurs in the operating room, often with the child prepared for immediate laparotomy and organ procurement once death has been declared. When the child dies, the surgeon cannulates the femoral vessels to allow the rapid infusion of cold preservative solution. The immediacy and importance of postmortem procedures severely limit the time families can spend with the child, and in most circumstances, family members are escorted from the operating room soon after the declaration of the child's death. This is an emotionally difficult time for families and staff. There is conflict between wanting to preserve the integrity and dignity of the child during the withdrawal of care process and the need to preserve the function of organs that are about to be donated.
Although our local organ procurement organization had established active DCD protocols with several area adult hospitals, Children's Hospital Boston had not developed a DCD program. Senior leadership viewed developing a DCD protocol as an institutional concern because of the unique clinical, ethical, societal, and legal considerations in pediatric patients. As such, a multidisciplinary task force was appointed to first determine whether a DCD program was consistent with the hospital mission and, if that determination was affirmative, to develop a DCD protocol and recommend an implementation process. The hospital's mission, similar to that of other major university-affiliated pediatric teaching institutions, includes excellence in clinical practice, research, education, and community service. Core values include the primacy of patients and family-centered care including sensitivity to and support for the needs of families from diverse backgrounds. Organ donation after brain death is considered a standard of care, and the institution has an active transplant program. Co-chaired by an intensive care physician and member of the hospital office of ethics, the task force included broad representation of members across the hospital community: specifically, parents, nurses, physicians, social workers, pastoral care workers, ethics advisors, and legal counsel.
We designed a qualitative study to provide the task force with an internal perspective on DCD in children. Our primary objectives were to gather the views of pediatric staff on whether a DCD program could be consistent with the mission and core values of our institution and to describe what staff members believe are essential elements of a model pediatric DCD program. Because of the significance of potential concerns regarding the process of DCD, the opinions of staff members who would be directly affected by a DCD program are important to understand.
Objectives: The aims of this project were to describe whether pediatric clinical staff members believe that a donation after cardiac death (DCD) program could be consistent with the mission and core values of a children's hospital and to identify what staff consider essential to the acceptability of such a program.
Design: Qualitative study.
Setting: Children's hospital.
Subjects: Pediatric clinical staff.
Interventions: Data were gathered from pediatric clinical staff during eight focus groups conducted in a children's hospital in March and April 2005.
Measurements and Main Results: Eighty-eight staff members participated. Six major themes emerged from qualitative analysis of the data: a) identifying children who could be candidates for DCD; b) considering the best interests of the dying child; c) approaching parents about DCD; d) preparing parents for their child's DCD; e) doing DCD well; and f) maintaining program integrity. Themes were used to construct a conceptual framework describing a model pediatric DCD program. Pediatric staff voiced numerous concerns. However, they identified making it happen for families who voice a desire to participate in organ donation as the primary reason for program adoption.
Conclusions: This study provides a framework for understanding pediatric staff perspectives on DCD programs in children. Results suggest several possible elements that may be helpful in framing interdisciplinary dialogue and informing institutional practices in the design of a pediatric DCD program.
The disparity between the number of patients awaiting organ donation and the actual number of organs transplanted continues to be a significant health care issue. One strategy to increase the number of organs available for donation is the procurement of select organs from nonheartbeating donors, also known as donation after cardiac death (DCD). The interest in DCD not only is related to the potential increase in organs for transplantation but derives from the requests expressed by families of patients dying from irreversible neurologic injuries when brain death criteria cannot be met.
Few pediatric DCD programs exist, and the orchestration of a child's death with DCD is quite different from what occurs without DCD. First, unlike competent adult patients, who may have an opportunity to express an opinion on organ donation, parents or legal guardians are always asked to provide consent for DCD for their child. Then, depending on the DCD protocol, there may be premorbid procedures and drugs administered that offer no benefit to the child, and may even cause harm or hasten death, and yet are deemed useful for organ protection. Withdrawal of life support usually occurs in the operating room, often with the child prepared for immediate laparotomy and organ procurement once death has been declared. When the child dies, the surgeon cannulates the femoral vessels to allow the rapid infusion of cold preservative solution. The immediacy and importance of postmortem procedures severely limit the time families can spend with the child, and in most circumstances, family members are escorted from the operating room soon after the declaration of the child's death. This is an emotionally difficult time for families and staff. There is conflict between wanting to preserve the integrity and dignity of the child during the withdrawal of care process and the need to preserve the function of organs that are about to be donated.
Although our local organ procurement organization had established active DCD protocols with several area adult hospitals, Children's Hospital Boston had not developed a DCD program. Senior leadership viewed developing a DCD protocol as an institutional concern because of the unique clinical, ethical, societal, and legal considerations in pediatric patients. As such, a multidisciplinary task force was appointed to first determine whether a DCD program was consistent with the hospital mission and, if that determination was affirmative, to develop a DCD protocol and recommend an implementation process. The hospital's mission, similar to that of other major university-affiliated pediatric teaching institutions, includes excellence in clinical practice, research, education, and community service. Core values include the primacy of patients and family-centered care including sensitivity to and support for the needs of families from diverse backgrounds. Organ donation after brain death is considered a standard of care, and the institution has an active transplant program. Co-chaired by an intensive care physician and member of the hospital office of ethics, the task force included broad representation of members across the hospital community: specifically, parents, nurses, physicians, social workers, pastoral care workers, ethics advisors, and legal counsel.
We designed a qualitative study to provide the task force with an internal perspective on DCD in children. Our primary objectives were to gather the views of pediatric staff on whether a DCD program could be consistent with the mission and core values of our institution and to describe what staff members believe are essential elements of a model pediatric DCD program. Because of the significance of potential concerns regarding the process of DCD, the opinions of staff members who would be directly affected by a DCD program are important to understand.