The organisation of the donation and the roles of the professionals involved in the donation process differ by country. Communication with and support of the donor family in the ICU was, in most countries, organised in cooperation between the DC, the intensivist and the ICU nurse. The DC coordinates the donation process on the ICU, has contact with the family and coordinates the organ retrieval procedure.

Table 1 outlines the timing of DC contact with the family in relation to consent for donation. In five countries there is no direct contact between the DC and the family (Denmark, Hungary, Sweden, Norway, and some regions of Belgium) and the DC coordinates the donation process at distance from an office, in close contact with the intensivist. In three countries (Croatia, Germany and Netherlands) only after consent is given for donation can there be contact between the DC and the family. In eight countries, contact between the family and the DC is possible before there is consent for donation. For example, in the U.K. the DC (called the specialist nurse—organ donation) plays an important and active role in the request for donation. Support and guidance of the family on the ICU during the donation process is provided by the intensivist and ICU nurse in all countries, while in 11 countries also the DC is involved in family guidance throughout the donor procedure.

All countries provide information to the donor family after the donation procedure. This information is given by letter, by telephone and in some countries face to face at the family home or in the hospital. The information is provided by the DC; only in the four countries where there is no contact between the DC and the family, the intensivist provides the information.

Respondents from most countries say the way in which information is provided depends on family wishes. In three countries, a national organisation provides the information (Hungary, Slovenia, United Kingdom). In some countries, the donor family is invited to the hospital a few months after the donation procedure, to evaluate and discuss the donation process.

The kind of information that is provided after the donation procedure varies; information about which organs/tissues are transplanted, information about the recipients gender, age or health. In two countries (Hungary and Finland), only a standard “thank you letter” is sent without any information about the recipients. During the last years, the information provided has reduced in many countries (n = 7), e.g., now the information about age, gender, time on the waiting list, and the health of the recipient, is limited. Some countries now only provide the information that the organ is transplanted or not. A reason suggested by participants for less information sharing was data protection legislation. Some stated that this is a pity, because less meaningful letters are sent to the family. Another factor suggested was social media, due to the fear that donor families will search for recipients’ information. This was mentioned for two countries.

The representatives from six countries expressed overall satisfaction with the care provided for donor families (Netherlands, Belgium, United Kingdom, France, Finland Iceland). The main concern from the other country representatives who were not satisfied was that there was no or not enough aftercare for donor families. Structural organised care for families after donation was missing, were some comments, like: “There is no organised care, donor family care should be implemented.” “More national follow up of donor families is needed.” A lack of structured organised after care was a frequent observation, highlighting there was too much variation per hospital or region. Comments: “There should be more follow up with donor families after they leave the hospital, to learn more about their grieving process and implement the lessons learned.” Information was lacking concerning the effects, positive or negative, of the donation to this grieving process. In some countries the opinion was that donor after care is too variable per region or hospital and should be implemented on a national level, to guarantee donor after care for all donor families. Comments: “smaller hospitals are less experienced; there is a wish to give more support to all families, not only to those who ask for help or information.”

We were interested if there was a difference in care for donor families on the ICU and families of regular ICU patients who die in the ICU. From the respondent countries, almost half are of the opinion that the care differs. The general opinion was that more attention is given to donor families during the donation process, especially if there is a DC present to coordinate the donor procedure, or a trained professional to give information and support to the family and who can help them in the beginning of the grieving process. Donor families also receive more care after the donation (aftercare) than families of deceased ICU patients, was the opinion of seven countries. “Donor families are invites to special ceremonies,” “donor families receive ‘thank you letters.’” “Yes, the care is different, donor families are invited to the donor hospital 6 weeks after the donation, to talk about their experience.” Families from regular ICU patients who die don’t have these special ceremonies in general. However, some state the care is equal, also families of non-donors are invited to the hospital for after care.

In 11 countries remembrance ceremonies are organised for donor families, only in four countries (Croatia, Finland, Slovenia, Sweden) was this not the case (Table 1). The ceremonies are organised at different levels: at a national level, a regional level, or at a hospital level. Examples of these different ceremonies are: a donor family day, a transplant honours day, a donor memorial day, a remembrance walk with donor families, a national donor monument, a hospital donor monument, a donor tribute evening. Sometimes smaller ceremonies are organised at a hospital level, like a farewell ceremony organised by a priest. There are hospitals that have a monument in their hospital in honour of their donors. In one country (the United Kingdom) a posthumous national award consisting of a special certificate and pin is offered to all the donor families, to pay respect to the donor through the donor family. During the annual ceremonies in some countries, recipients are also present as well as representatives from transplant centres to give support to families.

Who is responsible for organising the ceremonies differs per country: private organisations, a recipient organisation, local organisations from donor hospitals, or the event can be organised by the transplant foundation, or regional teams. All countries who provide ceremonies, state that they were satisfied with these ceremonies. Comments on the ceremonies: “very helpful for donor families,” “families are happy with the attention,” “well visited meetings,” “important to share experiences and emotions with other families.” According to some countries improvement could be the presence of a professional during the meetings, like a DC, to answer questions and give specific information.

In all countries but one (Croatia), written anonymous contact between recipient and donor family is possible, through an intermediate, the DC. In one country (Switzerland) a website was developed, where recipients and donor families can post their thoughts, thanks, experiences, and histories. Here was also a guide/template for a “thank you letter” to be used for transplant patients to a donor family. Initiative for contact is taken more by recipients than by donor families.

Four countries responded that a formalised process exists for donor family and recipient(s) to meet face-to-face (Table 1). However, the circumstances and conditions differ. For example, in the Netherlands, this is only possible through an organisation where donor families and recipients can report themselves, without involvement of professionals. Because anonymity is regulated by law, professionals cannot be involved. The organisation matches the donor family and recipient and arrange the meeting. In Belgium during donor day, a meeting is possible. In Sweden meetings happen, but without health care personnel. In the United Kingdom, the meetings are held in a mutual convenient place, well prepared with the support of the DC. Because the satisfaction of the donor family is not routinely measured, most countries state that family experience are not known. Two countries (the United Kingdom and Belgium) are positive about the meetings. Comments of other countries suggests that there is a lot of discussion about meetings between donor families and recipients. Comments included:

A few general comments were made, and suggestions to improve the care for donor families. For example, offering the family a conversation with a psychologist, if they are in need for support or to be more active in approaching recipients to send a kind of thank you letter to the donor family.

To be able to compare if the information provided to the donor families from the DC changed over the years, we asked participants to send examples of two letters: a recent letter and one from approximately 10 years ago. Letters were received from five countries. In four countries, the letters were changed, and in all of these cases less information was given about the recipients. Information about time on the waiting list, age (only an age period) or health information about the recipient was no longer given in the latest letters. The recent letters were simpler and more straight forward, consisting only of information concerning whether the transplantation of the organ was successful, with no more detailed information about the health process of the recipient. The reason for this change was reported as being stricter privacy legislation in the different countries.

Given the results of our research, we can make several recommendations. Donor family aftercare is an essential part of the donor process and should be delivered in a structured way and embedded into the organisational process. In order to establish best practice for a country, research on family views is needed. What services do donor families need? This research can be done using groups, such as donor family advisory group, or interviews with donor families. Research should also be conducted to evaluate letters from a donor family perspective; what information benefits the donor family? Are meetings between recipients and donor families beneficial for both? Those working with donor families and recipients should reflect on this inventory, and comparative practices, and consider whether they are meeting the needs of donor families. Furthermore, organisations can tend toward risk aversion in data protection at the expense of helping families; this tendency should be avoided. Research evaluating the impact of COVID on donor family care should also be performed.

This first inventory of 15 European countries about the care provided to donor families during and after donation and contact between donor families and recipients, shows, as expected, that there are differences between the countries. These differences depend on the organisation of donation, the law (and its interpretation) and the different roles of the professionals involved in donation. Donor family aftercare is provided in all countries and some countries provide remembrance ceremonies. In most countries, direct contact between donor families and recipients is not supported by the donation organisation. To date there has been limited research about the experiences and satisfaction of donor family aftercare and we would urge all donation organisations to consider this as a priority area.

This is the first multi-country study to compare the way care to donor family and aftercare is provided to donor families and contact between donor families and recipients, which provides valuable insights. Since this is a first inventory, it provides only an initial overview of the different aspects. More research is necessary to explore in depth in how communication and aftercare is given, and the experiences and satisfaction of the donor families, with including possible suggestions for improvement.

Belgium, Croatia, Denmark, Finland France, Germany, Hungary, Iceland, the Netherlands, Norway, Slovenia, Spain, Sweden, Switzerland, United Kingdom.