Evaluation: Donation Quality Standard in practice

Sanne van Oosterhout (IQ healthcare Radboudumc) conducted research into donation conversations and the use of the Donation Quality Standard. She discovered 4 conversation routes.

10 september 2023

We know that doctors often struggle with the 'no objection' registration. It does not feel the same as a 'yes' registration. In both cases, there is consent for organ and tissue donation. Researcher Sanne van Oosterhout conducted interviews and performed observations during organ donation conversations.

Donation conversation with the family

You usually discuss the registration in the Donor Register with the immediate family. The Donation Quality Standard promotes a uniform donation conversation. The quality standard specifies with whom you legally conduct this conversation and what the role of surviving relatives is.

What is the Donation Quality Standard?

The Donation Quality Standard was developed as part of the new donor law in 2020. According to the law, everyone in the Netherlands over the age of 18 is in the Donor Register. If you do not actively indicate your choice, you are listed in the Donor Register with a 'no objection' registration. That means consent for donation.

Donation Quality Standard

Research approach

The research is a qualitative evaluation of donation conversations in practice.

In 8 Dutch hospitals
Attended 29 donation conversations
Interviews with involved professionals and family members afterwards

Four routes for conducting conversations

Sanne: 'We see that doctors conduct the donation conversation in different ways. Four routes can be distinguished.'

'The consent route involves a 'yes' registration. The explicit wish of the potential donor is clear and a donation procedure is started relatively easily. With the other three routes, there is a 'no objection' registration. That brings more uncertainty. Was this actually the patient's wish? The doctor uses the new donor law as an introduction to the conversation and checks whether donation is truly the patient's wish.'

'With the presumed consent route, there is often recognition by the family, which means there is less or no more uncertainty about the registration.'

'Another route for 'no objection' registration is the consensus route. The doctor seeks consensus with the family if they do not recognize the registration or if there is resistance to donation. The family gets the feeling they are allowed to co-decide, and the doctor wants to avoid conflict.'

'With the family consent route, the doctor follows the family's wish or suggests that they are allowed to make a choice. The doctor's goal is primarily to provide optimal grief counseling. The consent that was effectively already there often falls away. With this last route, the burden is great for the family and the doctor.'

Advice:

Start training on donation conversations with the consent route and the presumed consent route.
Focus the conversation on the legal consent from the registration.

Why these four routes?

‘We see that doctors constantly feel they have to balance five goals. They want to:

follow the law
fulfill the wishes of the potential donor
reach consensus with the next of kin
give next of kin space for optimal grief processing
contribute to donor tissue and organs for patients

This balancing act makes the donation conversation complex, which is why doctors take different routes.

Do doctors meet the quality standard in practice?

‘Conducting uniform conversations as the goal of the quality standard proves neither possible nor desirable in practice. Every doctor and family is different, and therefore so is every donation conversation.’

What are alternatives or tips for doctors?

‘In the case of a 'no objection' registration, doctors can say: ‘According to the new donor law, your loved one is a donor. There is consent in the Donor Register based on 'no objection'. I would like to discuss that with you.’ Doctors experience support from the donor law in this.’

‘It is good to let a silence fall and wait for the family's reaction. Incidentally, our research was conducted shortly after the introduction of the new law. Many doctors were still untrained and inexperienced with the ‘no objection’ conversations. We therefore also advise doctors to participate in training.’

‘We advise doctors to reflect on the conversation themselves, talk to other doctors, observe, and learn from each other. For example, what difference the choice of words makes.’

‘And furthermore, it is good to incorporate conversation routes into training and practice them, with the exception of the family-consent route.’

Why no family-consent route?

‘The family-consent route is often used if the family is not aware of the consent based on a 'no objection' registration. We strongly advise doctors to avoid that route, because it turns out to be burdensome for the family to have to make the choice. Moreover, the donor's decision is already in the Donor Register.’

Do doctors' opinions or preferences play a role?

‘Every doctor has an individual starting point. Influencing factors include, for example, personal considerations regarding donation and the donor law.’

‘In addition, the doctor's previous experiences with the family play a role. It is possible that their views and feelings about donation are known to the doctor or easier to assess. The doctor's specific work context also has an influence, such as preparation for the conversation or prior knowledge, and experience in conducting donation conversations.’

Can public information help?

‘Public information about discussing your choice in the Donor Register is important. Every year in October, the NTS holds the Week of the Donor Conversation. These public campaigns by the NTS encourage talking to your family and friends. And good, reliable information helps in making your choice in the Donor Register.’

‘And furthermore, there are also government campaigns, which are mainly focused on registration. As far as we are concerned, the communication could be a bit more creative and more focused on the donation procedure.’