Concerns of family regarding organ donation: ‘Pay attention to the signals’

‘I knew my father wanted to donate his organs after he passed away. Yet, my first reaction when the doctor brought it up was: “No, stay away from him!” It wasn't until half an hour later that I thought: yes, of course, this is what he wanted.’ Charella van Ee, a relative of an organ donor, is a nurse herself. Yet, she was surprised by her own feelings. ‘I now know that you can have an intense initial reaction to such bad news. You really need time to let it sink in.’

Concerns about organ donation

Loved ones of organ donors often have concerns, knows Gert Olthuis, associate professor of medical humanities at Radboudumc. He researched what loved ones of organ donors struggle with and how they express this in donation conversations. Their biggest pain point is, of course, that their loved one is going to die. But organ donation also leads to concerns: can my loved one die peacefully this way? Can I stay with them until the end? Did my loved one really want this?

Signals of concern

Loved ones do not always appear to express such concerns out loud. They usually remain unspoken. ‘We saw that concerns are often expressed in small words, such as “oh-oh” or “intense!”’, says Gert. He advises healthcare providers to pay attention to those signals so that you can ask follow-up questions: what do you find intense? What do you mean by...? In addition, it is important to actively ask about concerns, for example: what is your biggest concern right now? What is going through your mind right now?The NTS discussion chart for donation conversationsreminds of that as well.

Giving control to loved ones

The research also shows something else: the best reaction to concerns is by no means always a factual explanation. “We see that healthcare providers often come with a lot of information,” says Gert. “But people forget most of it immediately. Moreover, there are concerns that do not so much require information, but recognition.” The best thing you can do is be curious, says Ellen Smets, professor of medical communication at Amsterdam UMC. ‘You mainly bring concerns to the surface if you ask questions and lean back a bit more. By doing so, you also give control to the family.’

Dosing information

The fact is that a lot of information must be provided in a short time during organ donation. But you can dose that, says Sandra Bisschops, organ donation coordinator at Radboudumc. She does this by clearly separating main issues from side issues. ‘I often say: “This part is important, I will repeat it later.” And: “Just let this information rest for a moment.”’ In the first conversation, she is mainly busy getting to know the people. ‘I usually start with: “Tell me something about the person we are going to talk about; who are they?” Then people don't have to think about the fact that they are in a difficult conversation for a moment, and they can talk about what is happening to them.’

Time for emotions

Attention to emotions is necessary. That starts with timing. ‘Immediately after bad news, emotions skyrocket,’ says Ellen. ‘People feel their existence is threatened and react by becoming very angry, freezing, or walking away. At that moment, information is not processed well. But there also comes a point where they can listen to you again. Half an hour or an hour can be enough.’

Being present during tests

An important action that helps next of kin is, where possible, meeting their wishes regarding the moment of death. For example, it can give people peace of mind to be present during the tests with which the doctor determines whether their loved one is brain dead. This applies to a DBD procedure (‘Donation after Brain Death’). In particular, the apnea test, where the person is temporarily taken off the ventilator, can give next of kin peace of mind. Cardiologist, intensivist, and coordinating donation intensivist Thomas Cherpanath: ‘As long as the ventilator is running and the patient is warm, it is very unreal for family to understand that the patient is no longer alive. That only becomes truly clear when there is no breathing for five or ten minutes during the apnea test.’ If the patient is indeed found to be brain dead, that is the official time of death and the family present is offered condolences. The patient is immediately put back on the ventilator after the apnea test so that the organs receive oxygen.

Being there until the end

Sometimes, however, next of kin want to stay with their loved one until the heart stops. This is only possible in a DCD procedure (‘Donation after Circulatory Death’). The ventilator is then permanently turned off and death is determined after five minutes of circulatory arrest. A DBD procedure then becomes a DCD procedure. This is not ideal for organ donation because organs suffer damage. But the interests of the next of kin come first, emphasizes Sandra. ‘I do ask people first if being present at the apnea test is an acceptable alternative for them. But if not, that is reason enough for us to turn it into a DCD procedure, even if someone is brain dead. The lead lies with the next of kin and they must feel that way too.”

This article was written following the webinar ‘Concerns of family about donation’. You can still watch the entire webinar back via:https://transplantatiestichting.nl/webinar