A donation conversation with families usually occurs at a difficult time in people’s lives. Families are offered specialist support during and after donation. Acknowledgment of the family’s generosity and gift of donation is an important way to recognise the contribution made by donors and their families.

Family donation conversations

2.1 Provide high-quality care for families throughout the donation experience

An important element of high-quality end-of-life care is offering the opportunity for donation to families in a way that is consistent with the Best practice guideline for offering organ and tissue donation in Australia (the Best Practice Guideline). This guideline outlines the preferred approach for providing support to families of potential donors. This approach includes the involvement of a Family Donation Conversation (FDC) trained doctor or nurse in every family donation conversation to support the family and provide them with information in a sensitive and respectful manner.

The FDC training (core and practical) is available to all health professionals who may be involved in donation conversations and, in particular, ICU and ED doctors, donation specialists and nurses. It is mandatory for all ICU trainee doctors.

We continued to fund the delivery of core and practical FDC workshops in all states and territories, running 13 core and 15 practical FDC workshops which trained over 450 health professionals in 2018–19. Workshop attendees are provided with tools and techniques to support families to make an informed choice about donation.

We have created a variety of different educational resources to complement the Best Practice Guideline and the concepts explored in the FDC workshops. These resources are targeted to donation specialists and delivered as part of a package on our updated DonateLife Learning Site. This package includes short videos, templates and guidance on how to discuss key donation topics with families. The new DonateLife podcast series also includes episodes on approaches taken to implement the Best Practice Guideline, as well as the collaborative approach between treating clinicians and DonateLife donation specialists to conduct family donation conversations.

In 2018–19 we developed and began delivery of small group training sessions for DonateLife donation specialists. This training builds on the current FDC workshops to expand skills and focus on key elements of the family donation conversation. The training includes a variety of scenarios and has been developed in a way that the DonateLife education staff across Australia can continue to deliver sessions regularly to meet the needs of their network.

National, state and hospital-level reporting of the elements of the Best Practice Guideline continued throughout 2018–19. These elements include routine referral, checking patient registration status, and ensuring the family is provided with the opportunity to discuss organ donation with appropriately skilled specialist staff.

In 2018–19 the OTA and the DonateLife Network continued to deliver the National DonateLife Family Support Service. This includes support provided by DonateLife specialist staff during the decision-making process in the hospital and support provided to families by the Donor Family Support Coordinators after donation.

We worked to ensure that our services and resources are meeting the current needs of donor families. This involved embedding nationally consistent support services as a normal part of end-of-life and after-donation care. We also continued to work closely with our DonateLife colleagues to ensure that donor families could readily access a number of support services and resources to assist them during their time of loss. Current support services include:

• offering ongoing contact with donor families after donation
• providing or referring counselling services
• facilitating the exchange of anonymous correspondence between the donor families and transplant recipients
• hosting annual services of remembrance for donor families and recipients to attend.

Donor families are encouraged to contribute to the ongoing development of donation services to meet their needs through participation in the Donor Family Study. This is a series of national studies of family experiences of organ and tissue donation conducted by Proof Research Pty Ltd for the OTA.

We published the results of Wave 3 of the Donor Family Study on our website at www.donatelife.gov.au/resources/donor-families/national-donor-family-study in June 2019. This study collected information on family donation experiences in 2014 and 2015, including 257 family members who consented to donation and 33 family members who declined donation (a significant increase from Wave 1 and Wave 2 studies). The results from the Wave 3 study are broadly consistent with the findings of the previous studies, and continue to bring to light the importance of having a prior conversation about donation with loved ones, noting that this information made the decision for families to consent to donation easier.

The Wave 3 results have been incorporated into the review of the IDAT workshop and will be updated in the FDC workshops. Opportunities are being explored to further disseminate the results, such as through a podcast episode. These activities will help to ensure that family perspectives inform professional practice.

Wave 4 of the study is currently under way and will collect information from families who made a donation decision in 2016 and 2017. We expect the Wave 4 study to be finalised before the end of 2019 when we will begin planning for the Wave 5 study.

2.2 Acknowledge the generosity and gift of donation

Donation is only possible through the generosity of donors and their families. Acknowledgment of the generosity and gift of organ and tissue donation is an important way to recognise their contribution.

DonateLife Thank You Day was held on Sunday 18 November 2018. It is a national day to acknowledge the generosity of donors and their families by saying ‘thank you’. The Thank You Day event is driven by the media and social media, with Australians being encouraged to take part by creating and sharing a thank you message on social media.

Annual DonateLife Services of Remembrance are held in each state and territory in recognition of all those who have been involved with organ and tissue donation. These services provide an opportunity for acknowledgment of donors and their families.