Noticing concerns and offering aftercare: how to better support the next of kin of an organ donor

Donation conversations researched

‘Next of kin and surviving relatives of organ donors often have concerns. Sometimes they express them loud and clear. But there are also quite a few concerns that they only express in small words like “ooh!”’, says Gert Olthuis, associate professor at the Department of Ethics of Healthcare at Radboudumc.

Olthuis led a study into donation conversations following the amendment of the donor law in 2020. The client was the NTS. Researcher Sanne van Oosterhout and others analyzed 29 donation conversations and interviewed surviving relatives.

Their research question: what concerns arise during donation conversations, how do these ‘difficult issues’ manifest, and how do intensivists and ICU nurses respond to them?

Six concerns

Olthuis speaks about this during an expert meeting on bereavement care. The NTS organizes this training for (donation) intensivists. Next of kin may struggle with six major themes, the researcher explains:

• First of all, of course, the ‘life event’ that their loved one is dying. ‘People are very emotional and live between hope and fear. They may be struggling with the decision to stop treatment.’
• Dying well. ‘People do not want to let their loved one die alone. They want to avoid their loved one suffering. And they want their body to be treated with dignity. This came up in many interviews: there is value in the body. People often did not express this concern during the donation conversation.’
• Tension surrounding donation: is this in accordance with the person’s wishes? ‘It is irreversible, that is no small thing.’
• Experience of time. ‘Once there is a “yes”, waiting for the retrieval surgery can be difficult for people. As next of kin, you are confronted with a schedule to which you have to conform as much as possible.’
• Procedural clarity. ‘People don't really know how the donation procedure works. They feel like they are giving up control. They also have questions about the recipient(s).’
• Involving absent family. ‘For example, a brother studying abroad. What would he think of it? And can those family members still say goodbye?’

Unspoken concerns

These major concerns do not always emerge explicitly. Some next of kin express them clearly, like a daughter in the study: ‘I want dad to breathe his last breath with us.’ But the researchers also see many unspoken concerns. People only let them shine through in words like: ‘oh!’, ‘intense’, or: ‘actually…’

Olthuis: ‘These are short words that express some kind of concern.’ Such as in the statement of a partner during a donation conversation in the study: ‘At first you think something like ah, yuck… ooh! But it is very important and I support it.’ The doctor does not probe into that ‘ooh’: what exactly is the partner struggling with?

Always ask about concerns

Doctors often miss such signals, says Olthuis. 'Those cues are also quite difficult to detect, especially when your mind is occupied with the information you still need to provide.' Nevertheless, interviewed bereaved relatives say they would have liked to discuss their concerns with the doctor. An important lesson from the study is therefore: ask as a standard practice what is on someone's mind. For example: what are you thinking about right now? What are your concerns? And if you do notice a sign of worry: what do you mean by...? What is your fear regarding...?

Provide recognition

Olthuis: 'If someone says, for example: "Now you're going to cut him open too!", you can explain: "This is what will happen and this is how he will return from the surgery." But information is not always the only or the desired answer. It can also be about acknowledging that it is difficult.' This resonates with an intensivist present: 'Only 10 percent of the information you provide is retained. I think that recognition should perhaps make up 90 percent of the donation conversation.'

New tool

The findings from the study have been incorporated into a new tool for organ donation conversations: a 'discussion chart'. The NTS created this with intensivists and organ donation coordinators. The discussion chart or conversation card visually represents the donation process. Relatives receive it afterwards as a memory aid.

'We know that people in stressful situations remember very little from conversations. With visual support, information is retained better,' says Anneloes Krom, learning and development advisor at the NTS. The relatives to whom she presented the idea reacted very positively. 'People say: "Something like that would have been so nice, because I don't remember anything from that period."'

Discussion chart for donation conversations

The card has two sides: one for doctors and one for organ donation coordinators. Both end with the question: do you have any concerns or questions? There is space for notes about, for example, the organs being donated and the time. It also features a QR code that links to informative videos. A pilot went well: the professionals who tested the discussion chart find it a valuable tool.

In September 2025, the NTS will distribute the discussion chart nationwide.

Experiences of bereaved relatives

The training ends with conversations with three surviving relatives, in small groups and then together. In one of the groups, Idelette Nutma talks about the organ donation of her 15-year-old daughter. 'I experienced the support in the hospital as very caring and warm. Everything was explained very well. Our other children were able to ask all their questions.'

There was one slip-up: the choice of words by the doctor who told them their daughter was going to die. 'The doctor said: “I’ll get straight to the point.” You can say that about something mundane, but not about something this terrible.' It is one of the lessons that comes up in the final group discussion. 'The importance of words is so great,' concludes an organ donation coordinator. 'I sometimes catch myself saying “good day,” but for these people, it is not a good day. So it is better to say: “Hello.”'