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 Specialist Nurse in Organ Donation (SN-OD) and recipient transplant coordinator will act as a conduit for information to pass between the two parties. This will be discussed by the SN-OD with the donor family at the time of donation and with the recipient, pre-transplant. If the family wish, the SN-OD will write to the donor family by day 14 post-donation, and inform the family whether the organs have been successfully transplanted or not. A brief anonymous description of who the organs went into and how they are functioning may also be given. The SN-OD 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, for example:
- Age range (decade)
- Outcome of the transplant
Additionally, the following donor information is acceptable to communicate to the recipient:
- Age range
- Type of death (such as trauma or CVA)
- Whether the donor poses a greater risk to transmission of infection or malignancy.
The following donor information should not be transmitted to the recipient:
- Name or initials
- Occupation or social class
- Date of birth (D.O.B.)
- Place of donation
- 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 the information is relevant to the outcome.
Donor Family Letter 14 Days Post Donation
The Specialist Nurse in Organ Donation (SN-OD) 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 details of 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 SN-OD/admin team from the transplanting centre.
Donor Family Thank You Letters
Transplant recipients may wish to write a letter of thanks to their donor family once they personally feel ready to do so post-transplant. This should ideally be discussed pre-transplant with the recipient and then again before discharge post-transplant, with the recipient being 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 SN-OD team that facilitated the donation.
Guidance on content
Guidance for recipients on how to write letters thanking their donor family is provided in the document Thanking your donor family, available to download below. The document provides recipients with guidance on the following:
- Where to start
- What to include
- How to say "thank you"
- Receiving a letter from a donor family
- Publicising a transplant
The donor family are asked at the time of donation to state whether they wish to receive a thank you letter, should one be written. If they stipulate that they would like to receive a thank you letter and a letter is written by the recipient, the SN-OD should forward this to the donor family in a sealed envelope so they can choose to open it at a time that is right for them. The SN-OD will check the thank you letter to protect the anonymity of both recipient and donor family before sending it in accordance with MPD. A photocopy will be kept on file.
Occasionally 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. 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 SN-OD office to ensure that the donor and recipient are correctly matched.