Requesting the gift of life

Around 1500 people are on Australian organ transplant waiting lists at any one time. To receive a transplant, these people rely on organ donation. A collaboration between UTS’s Faculty of Health and the NSW Organ and Tissue Donation Service (OTDS) is addressing the organ and tissue donation discussions being had with grieving families.

The issue of organ and tissue donation is a contentious one, bound by myths, cultural and religious beliefs and fear. The flipside is the gift of life.

In 2013, 391 organ donors gave 1122 Australians a new chance in life – the highest number ever. While NSW improved on their donation rate last year with a 16 per cent increase in donor numbers from 2012, there is still much work to be done.

Leigh McKay, Michelle Kelly and Julie Potter, photo by Joanne Saad

“We know that in surveys of the Australian population, people are really supportive of organ donation,” says Research Coordinator for the NSW OTDS Julie Potter. “Yet we have this disconnect, and when it comes to the point of them being asked the question at the hospital, they find it difficult to say yes.”

Potter is evaluating the effectiveness of a new ‘model of request’ – providing “designated requesters” in selected NSW hospitals – as part of her PhD under the supervision of UTS Professor Lin Perry. ‘The COMFORT Study’, as it’s coined, looks at this best-practice change and is examining whether consent rates are increasing because of it. Potter’s research is also looking at how families feel 90 days down the track looking back on their donation decision.

Supporting this change is a national three-part professional education package (PEP) designed to enhance the communication skills of specialist doctors and nurses who lead organ donation discussions with bereaved families in intensive care units and emergency departments.

A fourth workshop was developed using adult learning principles and simulation encounters for requesters to actively participate in and rehearse realistic donation scenarios. This unique feature is currently only on offer in NSW and delivered at UTS thanks to a Memorandum of Understanding between the Faculty of Health and NSW OTDS.

The OTDS collaborated with UTS Director of Simulation and Technologies Michelle Kelly to develop the simulation component of the program. It follows the steps of a real-life scenario: the hand over conversation with the hospital team and the designated requester, the introduction of the requester to the family, and the continuing discussion between the requester and the family. For authenticity, simulation scenarios are based on real cases with names changed for anonymity.

“It’s a half-day session with up to four participants, two in each room,” explains Kelly. “One goes through the process and a second person sits in the control room observing, then for the next case they swap over. They don’t repeat the same case, so they benefit from observing and also participating. The interaction is filmed and we have either psychologists or other doctors in the control room noting specific areas for discussion. When the action is finished, the actors stay in their roles for a period of time to debrief.

“I put this initiative forward to the project group and it has provided another perspective,” says Kelly. “The ‘relatives’ in role-play are able to tell the doctors specific things from their character, such as, ‘When you said this… I really felt like this...’ Then they come out of character and talk at another level about the interaction and give feedback from that perspective.

“The actors then leave and the debriefer continues with the clinical participants, providing specifics on how they performed in the situation. It’s the type of feedback you can’t get in your usual clinical practice.”

Education Coordinator for the OTDS Leigh McKay has worked in the sector for over 15 years and has seen education and the practice around the family conversation change significantly with the introduction of the PEP and, more recently, the simulation training.

“It’s about establishing their wishes and helping the family come to a decision that would still hold with the values and beliefs of their loved one. We only meet the family at this time of intense grief and emotion. Allowing them to talk about the kind of person their loved one is – or was – is one way to engage the family and help them come to a rational decision that’s right for them and their loved one. It’s a big decision and one that will have enduring consequences,” says McKay.

Feedback from participants shows the experience has been invaluable as they’re able to witness on video their own body language, word selection and tone in such difficult conversations. McKay adds that including invitations such as, ‘Tell me about your son’, brings the patient metaphorically into the conversation.

Potter says, “Families have shared with us why they’ve found the decision to donate helpful. When we do the simulation, we’re looking at how people have those conversations and what words can be used. Even though the ‘families’ in the simulation training are actors, they still come across as very genuine.

“If the family is still undecided, we provide them with further information and support to assist them to make a fully informed consent decision.”

Families commonly have misconceptions around organ donation, such as the belief doctors won’t try as hard to save the life of a registered organ donor. “That argument doesn’t even come onto the table,” sighs Potter. “The doctors’ and nurses’ goals are to save lives and organ donation doesn’t even come up until death is inevitable.”

Another misconception is that organ donation goes against a person’s religion. Such thinking has often proved to be misinformed or simply untrue and has become part of a wider strategy to enhance education for culturally and linguistically diverse communities around organ donation and its benefits. “Key national religious and cultural leaders have signed statements of support for organ and tissue donation to help their communities discover the facts, make a decision, and discuss this decision with their family,” says Potter.

“Sadly, many people misunderstand and think there are enough organs to meet demand. Only one per cent of people who die in hospital are actually able to donate their organs; which makes organ donation a rare occurrence.

“This is what makes the COMFORT Study so important. It’s addressing how clinicians can best support those families to make a fully informed decision.”

For more information about the Faculty of Health’s simulation facilities, email Michelle.Kelly@uts.edu.au

Visit donatelife.gov.au if you’d like to register your decision about organ and tissue donation, but also remember to inform your family of your wishes.