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 an evaluation of the Quality Standard for Donation. This quality standard was established 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 a tissue and organ donor, unless they have indicated in the Donor Register that they do not want this.

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

Less experience in conducting tissue donation conversations

Irene Wouters and Myrthe van de Meulenhof: 'Tissue donation conversations go differently than organ donation conversations. A major difference is the doctor's experience. Organ donation usually takes place in the intensive care unit (IC), because a potential donor must be on a ventilator. Intensivists in the IC have more experience in conversations with relatives and many have also completed the "Communication around donation" training.'

'With tissue donation, that is different. This mainly happens from other departments in the hospital and can take place up to 24 hours after death. Doctors outside the IC have less experience with donation conversations and have often not completed training. Any healthcare provider with a BIG registration is allowed to conduct a tissue donation conversation. Usually that 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 greatly improve your quality of life, such as being able to see better after a cornea 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'

'In conversations about tissue donation, doctors have three parties in mind: the family, the deceased, and society (recipient). Doctors struggle with balancing the interests of these three parties.

Doctors say: the relatives are sitting across from me. When I see that they are experiencing a great deal of grief, I want to send them home well and do them no harm.

Important for doctors is whether the deceased actively registered in the Donor Register, or passively made 'no objection'. According to the law, 'no objection' is a 'yes', but emotionally, doctors experience that 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

To the question 'Are you familiar with the Quality Standard for Donation?we didn't hear a resounding yes from anyone. This while the quality standard can help doctors in their preparation. It contains concrete advice, such as what to do if a relative is unreachable.

However, doctors barely use the quality standard. For the actual conversation, the guidelines in the quality standard are quite general. For example, it states that you should have a dialogue with the next of kin, in which they are given room to respond. They can potentially make it plausible that there is an objection to donation. But it does not state what a 'dialogue' is and what 'plausible' is.'

Acknowledge difficulty

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

Better preparation

The researchers also advise preparing physicians better, just as is done with breaking-bad-news conversations. "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. However, you can then "post-prepare", or reflect afterwards on how it went. You can discuss the conversation afterwards with another doctor: how would you have handled it?"

Don't ask, tell

"Doctors are starting the conversation very differently now. In cases of 'no objection', they tend to ask the relatives for their opinion, even though they don't need to give consent. The conversation should begin with the announcement that the person is registered as giving consent based on a 'no objection' registration. It is no longer a question."

"We think it can help to remind doctors of this in various ways, so that it becomes normal to start a donation conversation with an announcement instead of a question."