The following is known as the Bill of Rights for Donor Families, reproduced here with permission of the National Kidney Foundation. We have included it so that potential recipients of cadaver organs and tissues may better understand what a grieving family has gone through to generously provide you with your second chance at life. And what a blessing a gift of life is! Without donors candidates do not become recipients.

Donor Families have the right:

• To a full and careful explanation about what has happened to their loved one, his or her current status, and his or her prognosis.

• To be full partners with the health care team in the decision-making process about the care and support given to their loved one and to themselves.

• To a full and careful explanation about the (impending) death of their loved one, with appropriate reference to the concept of cardiac and/or brain death and the basis upon which it has been or will be determined that concept applies to their loved one.

• To opportunities to be alone with their loved one during his or her care and after his or her death occurs. This should include offering the family an opportunity to see, touch, hold, or participate in the care of their loved one, as appropriate.

• To be cared for in a manner that is sensitive to the family’s needs and capabilities by specially-trained individuals.

• To have an opportunity to make organ and/or tissue donation decisions on behalf of themselves and of their loved one who has died. This opportunity is to be included in the normal continuum of care by the health care provider after death has been determined and the family has sufficient time to acknowledge that death has occurred.

• To receive information in a manner that is suited to the family’s needs and capacities about the need for organ and tissue donation, and the implications of organ and/or tissue donation for later events, such as funeral arrangements, viewing of the body, and related practices.

• To be provided with time, privacy, freedom from coercion, confidentiality, and (if desired) the services of an appropriate support person (e.g. clergyperson) and other resources (e.g. a second medical opinion, advice from significant others, or the services of an interpreter for those who speak another language) which are essential to optimal care for the family and to render family members to make an informed and free decision about donation.

• To have their decisions about organ and/or tissue donation accepted and respected.

• To have opportunities to spend time alone with their loved one before and/or after the process of removing donated organs and/or tissues, and to say their "good-byes" in a manner that is appropriate to the present and future needs of the family consistent with their cultural and religious identity (e.g. a lock of hair).

• To be assured that their loved one will be treated with respect throughout the process of removing donated organs and/or tissues.

• To receive timely information that is suited to the family’s needs and capacities about which organs and/or tissues were or were not removed, and why.

• To receive timely information regarding how any donated organs and/or tissues were used, and, if desired, to be given an opportunity to exchange anonymous communications with individual recipients and/or recipient family members. Upon request, donor families should also be given accurate updates on the condition of the recipients.

• To be assured that the donor family will not be burdened with any expenses arising from organ and/or tissue donation, and to be given assistance in resolving any charges that might erroneously be addressed to the family.

• To receive ongoing bereavement follow-up support for a reasonable period of time. Such support might take the form of: the name, address, and telephone number of a knowledgeable and sensitive person with whom they can discuss the entire experience; an opportunity to evaluate their experience through a quality assurance survey; free copies of literature about organ and/or tissue donation; free copies of literature about bereavement, grief, and morning; opportunities for contact with another donor family; opportunities to take part in a donor or bereavement support group; and/or the services of a skilled and sensitive support person.

All "Rights" mentioned above should be provided by a knowledgeable and sensitive person in a private, face-to-face conversation whenever possible in a manner suited to the family’s needs. Also, these rights or explanations may need to be repeated or supplemented in more than one interchange.

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In the early days of transplantation (10 or more years ago) the following paragraphs would not have been thought of, much less written.

Recipients and their family are strongly encouraged to anticipate the needs of the donor family and send their "Thank You", anonymously, through the organ procurement organization, after receiving their organ transplant, and before they leave the hospital. It is hard to find words that describe your feelings, but donor families like to and generally need to hear those two powerful words "Thank You". We highly encourage sending a yearly update of the recipients’ status. When the recipient cannot do this themselves, their family is strongly encouraged to do this for them. Most donor families appreciate this beyond what we can describe here and as a group consistently express appreciation for the letters or cards they receive from recipients and their families.

We have the following suggestions of what to include in your letters and cards to your donor family. Write about yourself, your first or nickname, information about your job or occupation, about your family and friends, hobbies, interests, and the state you live in. Write about your transplant experience, how long you waited, and how it has affected your life. Tell them about your dreams and prayers. Be sensitive, use simple language.

Some donor families send a note or card in reply to recipient’s letters or cards. Some donor families take a long time before they reply, but still are excited to receive yours during that period of grief that they carry for however long.

There are, however, a very few donor families who want to put the whole experience behind them, and go on with their lives. And generally nobody knows that their loved one was an organ and/or tissue donor. And putting it all behind them they don’t ask for any notes from the recipients. But if they change their minds many years later, your cards will be on file for them.

Some donor family members look at every recipient they might meet and ask themselves the question, "I wonder if that recipient has my loved one’s heart, or liver, etc." Most donor families take all the support that they can get. Most donations are from a sudden and unexpected death. By sharing their feelings with other families who have donated their loved ones organs and tissues they find it much easier to accept their own grief and move on with their lives. They like to think how part of their loved one is "living on." and something "good" came of their tragedy and grief.

We know of one donor mother of a 21 year old college football star who was very disappointed "that everyone (35) who benefited from my son’s organs and tissues couldn’t take the time for a simple common courtesy and write a short Thank you note." She had received only one note, and that was 2 years later.

A few years ago we would not write the following paragraph. However, the transplant patient and donor community continually surprises the "medical profession."

When both the donor family and the recipient(s) mutually request to meet, that meeting can be arranged by the organ procurement organization donor support person or group. Not everybody (speaking of both donor or recipient) can handle such a meeting. However, many donor families have found it very helpful in their healing process. When they see healthy looking recipients they feel that they can now better accept their loss. Something good came of it. When these meetings occur they are very emotional to say the least but for those recipients the act of placing their arms around the donor family members and saying "Thank You" is indescribable.