In this section
Definition of Terms
Document Summary/Key Points
Post Donation Care
Tissue donation is when a child who dies is able to donate their tissue to potentially change the lives of others with a life debilitating illness or disease. In accordance with the Victorian Health Department and ANZICS policy, The Royal Children’s Hospital supports the donation of organs and tissues after death with informed parental/legal guardian consent.
Donation Specialist Nursing Coordinator (DSNC) A Clinical Nurse Consultant who is a member of DonateLife VictoriaThe RCH has two employed DSNC’s on staffMedical Donation Specialist (MDS) Specialised doctor trained in the management of potential organ and tissue donors who is a RCH staff member and is affiliated with DonateLife Victoria.The RCH has two MDS’s on staff who work primarily in PCIUDonateLife Victoria (DLV) State service that is responsible for the coordination and management of potential organ and tissue donors. Senior available next of kin (SANOK) In relation to a child who is living means: (i) a parent of the child, or (ii) if no parent is available-a person who is a guardian of the child, and In relation to a deceased child is: (i) a parent of the child, (ii) where a parent of the child is not available - a brother or sister of the child, being a brother or sister who has attained the age of 18 years, or (iii) where no parent or sibling is available - a person who was a guardian of the child immediately before the death of the child.
This guideline has been developed to provide staff with an overview of the tissue donation process and how parents/legal guardians can be supported to make an informed decision regarding tissue donation. Many patients at RCH who are palliated on the wards or at home may be suitable for tissue donation. This Guideline identifies ways to offer tissue donation in all potential cases where End of Life Care has been determined. It also aims to provide information to support staff and parents through making an informed decision that respects their values and beliefs in caring for their child at End of Life. There is no expectation that untrained RCH staff raise donation with a family
Neonates, infants and children who have been lawfully declared dead are suitable to be considered as potential tissue only donors. Tissue donation can occur in conjunction with organ donation. Tissue donation is a process similar to organ donation where the family have the opportunity to meet with the Donation Specialist Nursing Coordinator (DSNC) or Medical Donation Specialist (MDS) for information to make an informed decision. A DSNC at DonateLife can be contacted 24 hours a day on 9347 0408 for any guidance in relation to potential donation. Medical suitability is assessed by DonateLife in conjunction with The Lions Eye Donation Service (LEDS) and Donor Tissue Bank Victoria (DTBV)The exclusion criteria for Tissue Donation is more rigorous than for Organ Donation. All potential donors are screened to exclude any pathology, diseases that may be a risk factor to the recipients. DonateLife in conjunction with DTBV will discuss with the family which tissues may be possible to donate depending on age, medical history and circumstances of their death.
After the family has had time to process and understand the information about the end of life care for their child, a second meeting should be arranged by the medical team to discuss the possibility of tissue donation. In cases where tissue donation is being considered, the senior treating medical consultant, nursing teamleader, a Donation Specialist Nursing Coordinator and social worker should meet to review any possible conflicts of interest and anticipate any other concerns or issues that should be addressed during the family donation conversationClear documentation in the medical record of any family donation conversations is required.
The consent process involved with tissue donation must be explained to the senior available next of kin in detail by the MDS and/or DSNC. Interpreters must be used if English is not the family’s first language. Consent must be given for each tissue removed.Parents will be provided with the following information to be able to give informed consent:
Time must be given to a family to consider if tissue donation is the right decision for them.When the family are ready, parents (or ‘senior available next of kin’) are requested to sign the Consent Form (Consent documentation Victoria version 7.0) with the DSNC/MDS.
If the patient’s death is reportable to the Coroner, tissue donation is still possible. The DSNC will obtain consent from the Coroner for tissue donation to occur and/or any limitations to possible tissue donation.
Whole eye and corneal donation may only occur in children over the age of 2y, who meet the criteria for donation. This is determined by the Lions Eye Donation Service (LEDS). In Victoria, the whole eye is removed and a prosthetic disc placed to prevent any disfigurement to the child. Tissue donation of the cornea (whole eye) can occur in the hospital mortuary or at the coroners, if appropriate, within the discussed time frames. IMPORTANT NOTE ON EYE CARE: any patient >2y may be considered for eye donation; hence eye care is paramount to ensure the corneas are kept moist and minimize infection and ulceration.
Parents/care givers will be followed up by an RCH social worker/Palliative Care Team following the death of their child. They will also be contacted by a DSNC at DonateLife or DTBV to outline the outcome of the donation if requested by the family.Parents of children who are tissue only donors are provided with support through DonateLife and DTBV. If requested, they will receive a support package following the donation with the transplant outcomes, bereavement support material and contact with DonateLife family Support Coordinator.
It is important to maintain the privacy of the transplant recipients and donor families. It is an offence in Australia to disclose information regarding the donor or recipient under The Human Tissue Act 183 Section 37(2) and 37(3). The DSNC and/or DTBV will provide families with appropriate De- identified information about the transplant outcomes.
The staff/Unit involved in the donation process will receive information about the outcomes of the donation from the RCH DSNC’s. The RCH DSNC’s can organize a debrief session for staff involved in the donation process if required. This will provide feedback to staff and provide an opportunity to identify process issues that may be improved for further donation cases at the RCH. Support can also be sought from Nurse Unit Managers and EAP.
You can find the evidence table for this guideline here.
Please remember to read the disclaimer.
development of this nursing guideline was coordinated by Trechelle Herington and Jaeramie Carson, Donation Specialist Nursing Coordinators, and approved by the Nursing Clinical Effectiveness Committee. Updated August 2019.