On anonymity in organ donations and transplants

When life is passed on

By Lone Bøgh, Nursing professional development specialist at Danish Centre for organ donation / January 2018

Once a year, the Danish centre for organ donation host a special day for families of deceased donors. On that day, we honour and thank the families for making or supporting the important decision made in a difficult situation. We’re happy that the Danish Liver Association and other patient organisations, via a campaign this spring, want to highlight the donors and their families who choose to give life to others.

A comfort in grief

The families of deceased donors often experience organ donation as a comfort in their grief over losing someone. Both in the moment and in their lives afterwards. We often hear that it is a comfort in their grief, to know that the organs might help save someone else’s life. A mother said: “It was the only thing that gave meaning to the meaninglessness”, and a daughter said: “I think about the people who received the organs, every day”. Many next of kin also consider that it’s not just the person receiving the organ that benefits, but also their families who get back an active member of the family again.

Donation is anonymous

Donation is anonymous and therefore the donor’s families won’t get to know who the recipients are, but they are allowed to know which organs were transplanted, how the recipients are doing and their genders and ages. Families of organ donors are offered a follow-up talk with staff from the hospital and of receiving a letter with information, on how the recipients of the organs are doing. Most next of kin of deceased want to know how the recipients are doing. It is, however, very different when and if they want to know. That’s why they’re very careful at the hospitals, to make sure that it is an offer, so the donor’s families have the option to accept or decline. For the families, having lost a loved one, is the most dominant thing. A mother whose teenage son died, said: “Afterwards it’s not the donation that matters, it’s the massive lack of him at home”

When information come from the media

Some next of kin to donors have notified us, that they’re saddened by accidentally finding out, through either print- or digital media, who the recipients of the organs are. The information doesn’t come from the hospitals, but are typically from grateful recipients or their families either on Facebook or in weekly publications. A mother said that: “It wasn’t too hard to figure out that it was probably the person, who had received my son’s heart, since the date was the day my son, who was an organ donor, died. But I’d rather have been spared knowing that”. Wanting to express your appreciation for getting your life back is understandable, and of course the date when you received your new organ, is very significant for the recipient. It does however clash with the hospitals’ efforts to ensure anonymity between donor and recipient. It has to be an offer for the donor’s family, to receive information at the time in their grief process, where their need to know arises.

Did you know that – Anonymity between donor and recipient is determined by the Danish parliament and is written into the health care law in the form of health care worker confidentiality.

Source: Danish Centre for organ donation.