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Nursing guidelines

Tissue Donation

  • Introduction

    Definition of Terms

    Aim

    Document Summary/Key Points 

    Consent

    Coroners Cases

    Corneal Retrieval 

    Post Donation Care

    Patient Privacy

    Staff Support

    Links

    References

    Evidence Table


    Introduction

    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.  

    Aim

    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.

    Definition of Terms

    DonateLife Victoria (DLV) 
    State service that is responsible for the coordination and management of potential organ and tissue donors. 

    Donor Tissue Bank of Victoria (DTBV)

    The DTBV screens, processes, stores, tests and distributes multiple types of tissue. It is a public sector not-for-profit organisation. Its core function is to provide Australian surgeons with safe and effective tissue grafts for transplantation in many areas of orthopaedic, cardiothoracic, reconstructive surgery and burn care.

    Nurse Donation Specialist (NDS)
    A Clinical Nurse Consultant who is a member of DonateLife Victoria and The Royal Children’s Hospital,
    the RCH has a NDS on staff available Monday – Friday 0800 – 1630 on SpectraLink #51598.

    Medical 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 for PICU.

    Lions Eye Donation Service (LEDS)

    The Lions Eye Donation Service is an eye bank, based at the Royal Victorian Eye and Ear Hospital. It establishes consent for donation, coordinates and performs donation surgery, and then evaluates and distributes donated corneas and other eye tissue.


    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.


    • Tissue donation may occur after the neonate, infant or child donor has been pronounced dead according to legally recognised criteria.
    • End of Life Care must be the focus for RCH staff and this is not altered by the decision of a family to consent to tissue donation.
    • Palliative care conversations with the family should not happen at the same time as a donation conversation, unless of course, the family raise it.
    • This practice guideline provides an operational outline of how tissue donation can be facilitated at RCH.
    • Enquiries regarding this guideline can be made to:

    The RCH Nurse Donation Specialist (NDS) via spectralink #51598 in hours or 24hr Donate Life pager on 1300 DLV VIC (1300 358 842)

     


    Document Summary/Key Points

    Suitable Donors

    Neonates, infants and children who have been lawfully declared dead are suitable to be considered as potential tissue only donors.  Tissue donation can also occur in conjunction with organ donation. Medical suitability is undertaken by DonateLife in conjunction with LEDS and DTBV. DonateLife can be contacted 24 hours a day on 1300 DLV VIC (1300 358 842) for any guidance in relation to potential donation. Medical suitability is assessed by DonateLife, The Lions Eye Donation Service (LEDS) and (DTBV). The exclusion criteria for tissue donation is more rigorous than for organ donation.  All potential donors are screened to exclude any pathology or diseases that may be a risk factor to the recipients. DonateLife in conjunction with the DTBV will discuss which tissues may be possible to donate depending on age, medical history and circumstances of their death, with the treating medical team prior to conversations with the family. 

    Types of Tissue Donation

    • Heart Valves: Repair of congenital and acquired heart valve conditions:  Newborn >3 months to 65 years of age
    • Whole Eye/Corneal: Restoration of sight and reconstructive surgery post traumatic injury: >2 years of age (dependent on assessment)
    • Tendons: Joint reconstructive surgery for traumatic injuries: >18 - 55 years of age 
    • Bone: Orthopaedic and reconstructive surgery in bone cancer/ traumatic injuries/joint replacements: > 18-65 years of age 
    • Skin: Treatment of severe burns, other surgeries where skin grafting is used: up to 70 years of age (no lower age limit, dependent on assessment)

    Pathway to eye/corneal tissue donation after death

    Patient receiving palliative care or has died < 12 hours ago

    Contact RCH Nurse Donation Specialist (NDS) on spectralink #51598 or DonateLife 24 hour pager on 1300 DLV VIC  (1300 358 842) who can liase with the below on behalf of the treating team

    OR

    Contact the Donor Tissue Bank of Victoria directly and request the Tissue Coordinator on

     (03) 9684 4444

    OR

    If eye donation only contat Lions Eye Donation Service on 0408 370 148

    The NDS/DTBV/LEDS will explore medical suitability and will require some information regarding the patients’ medical history and cause of death/palliative care measures
    If there are no clinical or logistical exclusions identified by LEDS or DTBV, the home team, the NDS or the DTBV will approach the senior available next of kin (SaNOK) to obtain consent for whole eye/corneal/tissue donation depending on the scenario.
    DTBV staff will require the following additional information
    • Clarification of family discussion that has occurred
    • Further exploration of medical history
    • Information regarding fluid balance for prior 48 hours
    • May require medical/social history of mother if infant < 18 months or has been breast fed in the last 12 months
    • Complete physical examination observing for the presence of skin rashes, large pressure areas, broken bones, contractures, scars or tattoos
    • Whether death certificate has been completed

    If the family gives consent to tissue donation, the SaNOK will need to complete a questionnaire over the phone with the Tissue Donation Nurse Specialist regarding the donor’s medical and social history. The potential donor’s general practitioner may also be contacted for further information and other health records collected as required.

    This information in held in the strictest confidence and is only used for the purpose of donation.
    Tissue typing and serology may be required from the patient, +/- the patient’s mother if the infant is < 18 months of age or has been breastfed in the last 12 months, if the patient has been consented for tissue donation. This can be completed in the hospital environment or logistics will be discussed with LEDS/DTBV if the patient is being palliated in a venue other than RCH.
    Child is transferred to the mortuary as per RCH protocol within 12 hours death. In circumstances where the child has died in a venue outside of RCH, DTBV/LEDS, will organise logistics with the family.
    Tissue retrieval occurs within 24 hours of death at DTBV in Southbank Melbourne. Corneal/eye retrieval can occur on hospital premises as organised with LEDS and DLV.

     

    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 team leader, a Nurse Donation Specialist/representative from DTBV 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 conversation.


    Clear documentation in the medical record of any family donation conversations is required.

    Consent

    The consent process involved with tissue donation must be explained to the senior available next of kin in detail by the tissue donation nurse specialist from DTBV, in conjunction with the treating medical team. 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: 

    • The possibility some or all of the tissues may not be suitable for transplantation
    • The anticipated time frame for the tissue donation process 
    • That they can change their mind at any stage and rescind consent 
    • The steps in the process – e.g. possible transfer of the body to Donor Tissue bank Victoria in Southbank Melbourne or the Coroners Court as applicable
    • Whether the death will need to be reported to the Coroner and if it does, the coronial process 
    • The fact that tissue donation doesn’t have any benefits for their child 
    • Once processed, tissues can be stored for up to 5 years before use in transplantation 
    • Non-transplantable tissues will be respectfully disposed of if not used after 5 years 

    Time must be given to a family to consider if tissue donation is the right decision for them.  

    Corners Cases

    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.

    Corneal Retrieval

    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, when the whole eye is removed, a prosthetic disc is 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. 

    Post Donation Care

    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 NDS 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.

    Patient Privacy

    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.

    Staff Support

    The staff/unit involved in the donation process will receive information about the outcomes of the donation from the RCH NDS.  The RCH NDS can organise 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, EAP.

    Links

    References

    • Tissue Bank Victoria 2022. Available from https://www.dbtv.org.au/
    • Lions Eye Institute. 2022. Available from https://www.lei.org.au/
    • DonateLife: www.donatelife.gov.au
    • Human Tissue Amendment (Children in Care of State) Act No 164 (2008) (Date of commencement-13.2.2009) http://www.austlii.edu.au/au/legis/nsw/consol_act/
    • The ANZICS Statement on Death & Organ Donation (Edit 4.1 2021) Australian & New Zealand Intensive Care Society. Melbourne ISBN 1 876980 21 4 


    Evidence Table 

    You can find the evidence table for this guideline here. 


    Please remember to read the disclaimer. 


    The development of this nursing guideline was coordinated by Mellissa Short, Nurse Donation Specialist, PICU, and approved by the Nursing Clinical Effectiveness Committee. Updated August 2022.