Research: tissue donation conversations in practice

Irene Wouters and Myrthe van de Meulenhof, biomedical sciences students, conducted research into tissue donation conversations.

The research is part of anevaluation of the Quality Standard for Donation. This quality standard was drawn up to ensure uniform implementation of the new donor law. The students conducted in-depth interviews with 13 doctors who had recently conducted a tissue donation conversation.

Change due to donor law

The students investigated how doctors experience tissue donation conversations and whether they use the Quality Standard for Donation. Since the introduction of the new donor law (2020), people are automatically registered as donors of tissue and organs, unless they have indicated in the Donor Register that they do not wish to be.

As a result, the conversation with next of kin has changed. The doctor no longer has to ask for permission, but must primarily inform the next of kin that their loved one is registered as a potential donor.

Less experience in conducting tissue donation conversations

Irene Wouters and Myrthe van de Meulenhof: 'Donation conversations for tissue donation are different from those for organ donation. A major difference is the doctor's experience. Organ donation usually takes place in the intensive care unit (ICU), because a potential donor must be on a ventilator. Intensivists in the ICU have more experience in conversations with next of kin and many have also completed the 'Communication regarding donation' training.'

'It is different with tissue donation. That mainly happens from other departments in the hospital and can take place 24 hours after death. Doctors outside the ICU have less experience with donation conversations and have often not followed any training. Any healthcare provider with a BIG registration is allowed to conduct a tissue donation conversation. Usually, it is whoever is there at that moment, often a doctor in training.'

Improving lives feels different than saving lives

Organ donation can save lives, tissue donation usually cannot. Donor tissue can, however, greatly improve your quality of life, such as being able to see better after a corneal transplant or having more energy thanks to a new heart valve. The researchers see that this makes a difference. 'An organ that can save a life may weigh a little heavier for doctors than tissue that is life-improving.'

'No objection' feels different than a 'yes'

When discussing tissue donation, doctors keep three parties in mind: the family, the deceased, and society (the recipient). Doctors struggle with balancing the interests of these three parties.

Doctors say: the next of kin are sitting across from me. If I see that they are in great distress, I want them to go home feeling supported and not cause them any harm.

It is important for doctors whether the deceased actively registered in the Donor Register or passively registered as 'no objection'. According to the law, 'no objection' is a 'yes', but emotionally, doctors experience it differently. If the surviving relatives are in total shock, or say that the person really did not want to donate, it is very difficult for doctors to override that.

Quality Standard for Donation hardly used

When asked 'Are you familiar with the Quality Standard for Donation?' we did not hear a resounding yes from anyone. This is despite the fact that the quality standard can help doctors with their preparation. It contains concrete advice, such as what to do if a relative is unreachable.

However, doctors hardly use the quality standard. For the actual conduct of the conversation, the tools in the quality standard are quite general. For example, it states that you should have a dialogue with the relatives, in which they are given space to respond. They can potentially make it plausible that there is an objection to donation. But it does not state what a 'dialogue' is or what 'plausible' means.

Acknowledging difficulty

According to the researchers, that generality is logical because every situation is different. However, they do advocate for explicitly naming the balancing of interests in the quality standard. 'Acknowledge that this is at play and that it is difficult. You can pretend it doesn't exist, but it is there.'

Better preparation

The researchers also advise preparing doctors better, just as is done for breaking bad news. 'It would be good to have another doctor observe the first time, or to observe an experienced person yourself first. That is not always feasible, because conversations often take place at night when there is only one doctor. You can, however, do a 'post-briefing', or reflect afterwards on how it went. You can discuss the conversation with another doctor: how would you have handled it?'

Not asking, but informing

Doctors currently start the conversation in very different ways. In cases of 'no objection', they are inclined to ask the relatives for their opinion, even though they do not need to give permission. The conversation should start with the notification that the person is registered with consent based on a 'no objection' registration. It is no longer a question.

We believe it could help to point this out to doctors in various ways, so that it becomes normal to start a donation conversation with a statement instead of a question.