Organ donation

Contact with the recipients after organ transplantation

The organ donation specialist nurse (or donor co-ordinator) is crucial in the donation process and was introduced to families when they were deciding whether to consent to organ donation. S/he helped explain the process and, later, gave donor families brief information about the recipients: - of their loved one’s organs. All contact between recipients and donor families takes place via the specialist nurses assigned to each family and recipient.
Shortly after the death of their relative, the organ donation specialist nurse contacted donor families to let them know which organs had been donated and each recipient’s age and sex. A few people said the nurse had visited them at home to give them this information but most had received a letter. Hearing this news was very important to most people, as was receiving letters from recipients.
Linda said she’d received two letters from the specialist nurse – one for her and a separate one for her son, written in a way that a young child could understand. She was impressed with the sensitivity with which both letters had been written, especially the one for her son, but said reading the letter had been ‘bitter sweet’.
How much information donor families received on recipients after the initial update ranged from none at all to regular letters from recipients. Ann said she hadn’t received any more information from the specialist nurse or any letters from recipients after the first update but would have loved to have heard more. Some donor families we interviewed, who had not heard from or had heard very little from the recipient, had benefited enormously from talking to or hearing about recipients at events organised to promote organ donation. Hearing what a difference a transplant had made to their lives was very fulfilling and reinforced how important their relative’s gift had been.
Some people we talked to said they’d heard from one recipient by letter but would have liked to have heard from all the recipients. Several advised recipients to write to the donor family because hearing from them was so important to them. A few felt that a part of their loved one lived on in the recipient so their welfare mattered to them. Knowing they now had a better quality of life was often positive news after the tragic death of their relative. Others recognised that writing to donor families could be difficult for recipients because they were aware that someone had to die for them to be able to receive an organ. They might be afraid of opening up old wounds.
For most people we talked to, the first letter from a recipient was very difficult to read and was read with mixed emotions – sadness about the death of their relative but fulfilment and happiness that the recipient was well and that something positive had come out of a traumatic situation. One couple said that, when the specialist nurse phoned to say she had received a letter for them from a recipient, they were not ready to read it. A few months later when she phoned again, they asked her to post it to them. Some people we interviewed said that, at first, they were too grief-stricken to think very much about the recipients. Over time, however, they wanted more information about them and it mattered that their lives had improved after their relative’s donation.
For most people we interviewed, hearing from the recipient was very important and several said it had, in some way, helped them get through a very difficult time. Several people described how they’d treasured the letters they had received. Eunice kept the letters in a memory box and would take them out to reread them to her grandchildren. Some people heard from several recipients every now and again and wrote back to them. Andrea said she took the first step and wrote to two of the recipients of her brother’s organs, having discussed it with the specialist nurse.
Occasionally, some of those we spoke to said that, after writing letters, they talked with recipients on the phone and exchanged photographs. A few later met up, usually with their nurses present. Sue and Jackie also took part in television programmes that were discussing organ donation, and they and the recipients were asked about their experiences. This was an opportunity to raise awareness of organ donation and encourage others to think about it or register on the Organ Donor Register.
Eunice said that, although her husband was ready to meet up with one of their daughter’s recipients, she still felt unsure about it.
A few people felt that hearing too much about a recipient’s new life too soon could be painful when they were still grieving the loss of their relative. After corresponding with a recipient by letter for some time, Catherine and Tom planned to meet him. When Catherine received photos of his grandson, however, she was heartbroken because she would never be a grandmother after losing her only child. She was too upset to meet and decided it was best to stop keeping in touch.
Some people we interviewed received regular letters from recipients, often on the anniversary of the donation. Others had been disappointed because they would have liked to receive annual updates on the recipients’ welfare but, after the first year or so, they’d heard nothing more from the specialist nurse (see ‘The organ donation specialist nurse’).
Linda said that, after her first brief update from the nurse and a letter from a recipient, she did not want any further information. She was happy that the recipients were well and enjoying life again but said that was sufficient. She felt sad when she heard that one of the recipients of her husband’s kidneys had had complications. A few other people also said it had been difficult to hear bad news, especially if a recipient had died.

Last reviewed May 2016.


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