Donor Family and Recipient Contact
Information the donor family and recipient are entitled to know
Protecting the anonymity of both the donor and transplant recipient is of paramount importance. Post transplant the SNOD and recipient transplant coordinator will act as a conduit for information to pass between the two parties. This will be discussed by the specialist nurse in organ donation (SNOD) with the donor family at the time of donation and with the recipient, pre transplant. If the family wish, the SNOD will write to the donor family by day 14 post donation and inform the family whether the organs have been successfully transplanted or not and a brief anonymous description of who the organs went into and how they are functioning. The SNOD will also offer to supply follow up in the form of a letter at one year post donation.
Below is what is stated in the shared NHSBT and BTS: Guidelines for the consent for solid organ transplantation in adults. March 2011 (whole document on the BTS website www.bts.org.uk );
These are all guidelines and in the case of the recipient’s information for the donor family they are there as a minimum, there is no reason that if a recipient is happy and consents to share more personal information about their social life, e.g. the fact that they have children or a spouse that this can’t be shared. It is not necessary to disclose the recipient’s underlying pathology or diagnosis to the donor family.
The recipient should be informed that the donor family will be told basic information about them.
i.e. i) age range (decade)
iii) outcome of the transplant
and the following donor information is acceptable to communicate to the recipient;
i) age range
iii) type of death (such as trauma or CVA)
iv) whether the donor poses a greater risk to transmission of infection or malignancy.
The following donor information should not be transmitted to the recipient;
i) name or initials
ii) occupation or social class
iv) place of donation
vi) sexual, alcohol or drug history
Where specific information is required by the recipient, (such as smoking history), that information may be given so long as donor confidentiality is maintained and is relevant to the outcome.
Donor Family Letter 14 Days Post Donation
The Specialist Nurse in Organ Donation (SNOD) that facilitates donation will contact the donor family no more than 14 days post donation to give them some information about the organ outcome and thank them for their generosity at a time of great adversity. The letter will include whether the organs have been successfully transplanted, sent for research or disposed of. Organ outcome information is collected on the HOTB form and also by the SNOD/admin team from the transplanting centre.
Donor Family Thank You Letters
Transplant recipients may want to write a letter of thanks to their donor family at a time they personally feel ready to post transplant. This should ideally be discussed pre transplant with the recipient and then again before discharge post transplant and the recipient informed of local protocol. Most transplanting centres will have patient information booklets containing a local protocol for passing on such letters and general guidance as to appropriate contents. The letters should not contain any recipient identifiable information i.e. surname, address or town name. The recipient transplant coordinator will check the letter, take a photocopy and then forward the original to the SNOD team that facilitated the donation.
Guidance on content;
- Address the thank you letter to “ Dear Donor Family” or Dear Donor’s loved ones”
- Leave the envelope open for checking purposes
- Recipient’s first name only
- No home or work address or significant geographical location
- If a photo is included please check that no identifiable information is included i.e. school logo on jumpers, signs in the back ground.
- Give an insight into what life was like before transplant, for example coping on dialysis, what was day to day life was like and how much life has changed following the transplant.
- How long the recipient has been on the transplant waiting list for?
- How did they feel when they were offered the chance of a transplant?
- How does the recipient and family feel now?
- Examples of things people have used:
- ‘I hope this letter will help you through your loss, as you have helped save a life.’
- ‘Although I did not wish for someone to die, I did wish that should someone die, they and their family would be kind enough to agree to donation.’
- ‘If you can imagine this, maybe it will help you smile through your tears.’
Occasionally the donor families state that they do not wish to receive any thank you letters, in this instance should a letter be written by the transplant recipient the family will be informed a letter has arrived at the regional office and the letter is then kept on file should the donor family ever change its mind.
Below is the minimum information that should accompany a thank you letter from the recipient centre to the regional SNOD office to ensure that the donor and recipient are correctly matched.
|Date of donation
|Date of transplantation
|Please note these may be different if organs transplanted the following day.|
|Liver||Whole||LL segment | RL segment|
|Small bowel||inc colon|
Letters from the Donor Family
Occasionally the donor family may wish to write to the transplant recipient, the SNOD will advise the family about appropriate content again making sure that the anonymity of both the donor family and recipient is maintained. The letter will be sent to the recipient transplanting centre and the recipient coordinator will approach the recipient asking if they would like to read the letter.
Sometimes after initial letters both the donor family and transplant recipient express a wish to meet face to face. This is something that needs discussion and contemplation and must be by mutual consent. The SNOD and recipient transplant coordinator will council their respective clients and facilitate this if all are in agreement that it is something they both wish to do. Next section: Frequently Asked Questions