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Potential organ donors must be cared for in an intensive care unit (ICU) with life-sustaining therapies to avoid prolonged hypoxia and ischaemia while dying. The National Health System estimates that only 1.1% of UK annual deaths occur in circumstances that allow organ donation.1 The primary tissue that children can donate is heart for valves (if recovered within 24 hours of death), and the circumstances of death are less restrictive compared with organ donation. Darlington et al 2 interviewed bereaved parents whose child received care in a paediatric hospital ICU or hospice facility and healthcare providers in the same care areas to better understand their perspectives on organ and tissue donation (OTD) by children with chronic medical conditions.
Parents reported positive views about OTD but said the process was complex. Some parents not approached for donation made inaccurate conclusions regarding their child’s organ function and donor eligibility. Providers supported organ and tissue donation (OTD) generally but explained that donation often complicated or altered end-of-life care families experienced. Depending on the clarity of medical information and parental acceptance of a fatal prognosis, brain death determination can be perceived to prolong time to death due to recommended observation periods and ancillary testing required to diagnose neurological death. Complete cessation neurological function from secondary brain injury may take hours to several days in patients presenting with some residual brain stem function immediately after devastating acute neurological injury so withdrawal of life-sustaining therapies (WLST) without brain death determination sometimes is recommended to families. Prior to re-establishment of donation after cardiac determination of death (DCD),failure to document neurological …