Attention and empathy help the loved ones of donors

How do bereaved relatives experience the process surrounding the donation of a loved one's organs or tissue? The NTS mapped out the 'journey' that relatives take from the moment their loved one passes away. It yielded valuable insights for practice.

For the study, 24 bereaved relatives were interviewed; 13 after an organ donation and 11 after a tissue donation. Marliek Coppens, a consultant at research and consultancy firm Excap, conducted the study and the interviews together with a colleague on behalf of the NTS. 'We asked open-ended questions and delved into what the relatives told us during the conversation. For the relatives, such a conversation is part of the grieving process. There was room for that. At the same time, the conversation kept returning to the question of how they experienced the donation trajectory.'

The relatives had signed up for the interview themselves after a call via multiple channels. 'Many people are proud of their loved one and want to share that, or they want to ensure that the process becomes better for future relatives,' explains Coppens. 'What struck me was that people no longer remember exactly what was said during the process, but they still know how they felt at different moments. In our methodology, these emotions are central. If you know what emotion a relative had and why, you can also look at how you can realize a different emotion at that moment.'

Need for recognition

Teun Bezema, an organ donation coordinator at UMC Groningen and a member of the working group involved in the experience study, explains why the research is so important. 'You need to know what relatives are missing in the process and what is needed to make it better for them. After all, it comes down to them; they are the ones left behind, and my goal as an ODC is to have relatives leave the hospital with the best possible feeling, despite a sad situation. The NTS research provides insights that we can use in our daily practice.'

Bezema recognizes many experiences described in the research report from his daily practice. 'For example, that professionals must be careful not to use too many medical terms. I often notice myself that relatives know a lot about transplantation, but not about the donation. For example, they have no idea how much time the process takes. That can be disappointing. That is precisely why it is important that all professionals inform the relatives well. And there is also a role for national public information there.'

Pilot, training, and communication

The research among bereaved relatives is part of the 'Building Donation Care' program that the NTS is carrying out on behalf of the Ministry of Health, Welfare and Sport. Program manager Karlijn Sparidaens: 'After the relatives' journey was mapped out, medical professionals in the working groups gave suggestions for the recommendations to the steering committee, in which the medical field is represented. Some of the recommendations can be addressed in ongoing pilots and through training and communication.

In addition, we will start new initiatives in 2022 in consultation with the field.' The NTS wants to approach bereaved relatives more often in the future. Sparidaens: 'Then we could properly test whether the adjustments we are making are having an effect.'

Sparidaens finds it a great boost that relatives are generally satisfied and that attention and empathy from professionals are crucial in this. The latter is also recognizable to Bezema: 'When we call the relatives after eight weeks, they often look back with a good feeling. My advice to colleagues: take the relative by the hand and take your time. There is time to let relatives get used to the prognosis, to get used to the idea. Taking a little more time can improve the experience.'

Key insights from the bereaved relatives study

General

• Bereaved relatives are generally satisfied with the donation process
• Sincerity and attention from doctors and nurses make the difference
• The story of bereaved relatives is important for a wider audience

Insights from relatives of organ donors

• The presence of an organ donation coordinator provides peace and clarity
• Waiting time can be experienced as extra time to say goodbye
• Presence of the transplant team is impactful
• The moments of communication after the donation are unclear
• The letter containing the results is seen as a valuable document

Insights from next of kin of tissue donors

• Difference between organ/tissue donation is often unclear, leading to false expectations
• Reunion after the surgery can be impactful (positive and negative)
• Funeral director is a source of information
• Communication after donation (consisting of two letters) is unexpected and sometimes (too) fast