National Communication Guidelines

Regarding Communication Among: Donor Families, Transplant Candidates/Recipients, Health Care Professionals

The initial development and 2004 revision of this document was a collaborative effort involving years of research, review and cooperation among the following organizations:

  • Association for Death Education and Counseling
  • American Association of Critical Care Nurses
  • American Society of Transplantation
  • American Society of Transplant Surgeons
  • Association of Organ Procurement Organizations
  • Division of Transplantation, HRSA, HHS
  • Eye Bank Association of America
  • Musculoskeletal Transplant Foundation
  • National Donor Family Council of the National Kidney Foundation
  • National Funeral Directors Association
  • National Kidney Foundation
  • National Marrow Donor Program
  • North American Transplant Coordinators Organization
  • Society of Transplant Social Workers
  • transAction Council of the National Kidney Foundation
  • United Network for Organ Sharing Recipients

Table of Contents

Foreword
An Historical Perspective

The Initial Guidelines
In 1995, the National Donor Family Council (NDFC), an organization of donor families supported by the National Kidney Foundation (NKF), initiated a collaborative effort by inviting critical-care nurses, bereavement experts, organ and tissue procurement coordinators, clinical transplant coordinators, transplant physicians and surgeons, donor families, and transplant candidates and recipients to explore options for facilitating communication from professionals and between donor families and transplant recipients. The organizers recognized that because this was a complex and controversial subject, it was critical that as many transplant organizations and associations as possible participate in the initiative. The outcome of this collaboration was the publication of the National Communication Guidelines in July 1997. These Guidelines became the standard and only national communication guidelines in the field of donation and transplantation. The intent was to encourage organ procurement organizations (OPOs) and hospital transplant centers to adapt this text to fit their internal needs and provide a level of consistency nationwide. Those initial Guidelines were based on research the NDFC had compiled identifying the needs of donor families and transplant candidates/recipients, as well as the practices of transplant and procurement professionals. Participating organizations affirmed the spirit of these Guidelines and have encouraged members to implement them into their daily practice. Donor families and transplant recipients alike have enthusiastically supported the basic principles upon which the Guidelines are based. Since the first publication almost 10 years ago, many donor families continue to be interested in the well-being of the recipients. Others wish to communicate with the recipients and perhaps tell them about their family member who donated. A parallel desire to communicate existed on the part of many transplant recipients. Also, since the publication of the original Guidelines, donor families have been vocal in alerting the NDFC when those Guidelines worked and when they did not work. Therefore, the need to update the original National Communication Guidelines was identified and a new work group established.

Living Donation
Separately, the increase of living donation, which since 2001 has surpassed non-living donation in numbers, has led to the development of individuals volunteering to donate to recipients who are completely unknown to them. These donors will be referred to in this document as “living non-directed donors.” These individuals volunteer to donate to a transplant center’s or organ procurement organization’s local waiting list, but without directing who will become the recipient of their organ. Traditionally, living donors always knew their recipients. Now, a living donor may often be in the same situation as a deceased donor family—one of not knowing the recipient prior to donation and transplantation. What kind of communication should these donors and recipients receive? What types of contacts are appropriate between living non-directed donors and the transplant candidates or recipients who receive the organ? How should these two types of individuals go about initiating contact, if they wish to do so? What lessons can be learned from communications between donor family members of a deceased donor and transplant recipients, as well as from the original Guidelines?

Today
Some things have not changed for families of deceased donors and recipients. Although most donor family members and transplant candidates or recipients receive initial information about each other from professionals, many still do not. Sharing of information and subsequent follow-up was and often still is inconsistent among and within organizations. In addition, although communications between donor families and transplant recipients have continued to increase, some medical professionals have not encouraged it, nor did they typically have protocols in place to ensure confidentiality and privacy. The privacy rule, a federal regulation under the 1996 HIPAA (Health Insurance Portability and Accountability Act), which first took effect in 2003, has led to increased awareness of issues related to confidentiality. It should be emphasized, however, that exemptions under HIPAA allow hospitals to release information, such as transplant recipient health status information, to organ procurement organizations and other entities engaged in facilitating organ, eye or tissue donation and transplantation.

(Prior to the transplant operation, living non-directed donors receive only very general information and characteristics of candidates waiting for organs without any identification of who will receive their gifted organ. This is the basis of living non-directed donation and is necessary to preserve confidentiality of the donor and recipient.) In 2003, an expanded collaboration effort was undertaken. Donation and transplant organizations sent representatives to a meeting organized by the National Donor Family Council to update the original Guidelines to reflect the 21 st Century. They included the American Society of Transplantation, Association of Critical Care Nurses, Association of Organ Procurement Organizations, Division of Transplantation, Eye Bank Association of America, National Funeral Directors Association, National Marrow Donor Program, North American Transplant Coordinators Organization, transAction Council, United Network for Organ Sharing, and other individual professionals who are experienced in this topic. During this meeting, two separate work groups were convened: one to address communication between organ and tissue donor families of deceased donors and transplant recipients, and the second to address communication between living non-directed donors who gave kidneys to transplant candidates who previously were unknown to them. As with the development of the initial Guidelines , the work group members recognize that different agencies and transplant centers will adapt them to meet their particular systems while maintaining the basic philosophy.

The development of communication systems by professionals about and between donor families, living non-directed donors, and transplant candidates or recipients has happened incrementally.

Nevertheless, the use of the Guidelines will enhance services provided to donor families, living non-directed donors, and transplant candidates or recipients. Implementation of these revised Guidelines will increase the level of satisfaction experienced by all who are involved with organ and tissue donation and transplantation, and will ultimately improve the entire system of donation and transplantation. The following revised Guidelines address the best practices for family members of deceased donors, the recipients, and the recovery and clinical transplant professionals who serve them. A new section is added to recommend practices for living non-directed donors, the transplant candidates and recipients, and the professionals who serve them.

Tissue Donation
Additional information for tissue and eye donation and transplantation has also been added, recognizing that the process for tissue and eye donation and transplantation can vary widely from that of organ donation/ transplantation. Some of these differences include the limited interaction that an OPO or independent tissue recovery program may have with the tissue or research donor family. At times, the only interaction to obtain informed consent for donation and to conduct the behavioral risk assessment interview is by phone. Most OPOs provide the same care for tissue/eye families as for organ families. While the processes for obtaining tissue and eye recipient information continues to evolve and improve, the committee also recognizes that there are many factors that affect tissue and eye banks’ abilities to retrieve and share recipient information. The preparation and processing of different tissues varies greatly from tissue to tissue, as does the time of tissue transplantation. Corneal tissue can be transplanted up to five years after recovery. Bone tissue often is not transplanted for several weeks to several months, and in some instances, several years. Also, federal regulations regarding the safe recovery and transplantation of tissues and eyes continue to evolve and can affect the timing of transplantation and obtaining of recipient information. For instance, serological testing is performed in many circumstances after the tissue and eye recovery is completed. The release and retrieval of autopsy findings can affect the release of tissues, like bone, for processing and subsequent transplantation. Due to all these factors, special consideration must be given to how tissue donor families and tissue recipients communicate. Realistic expectations must be communicated to potential tissue donor families. Since one donor typically donates multiple tissues for transplant and/or research, several organizations may be involved in the recovery of tissues, such as a local eye bank, skin bank and bone bank or tissue recovery program within an OPO. Because of this fact, recovery organizations should work together cooperatively at the local level to develop procedures that will avoid multiple agencies contacting a donor family, which can potentially result in confusion for the family. The Guidelines for communication with tissue and eye donor families and tissue recipients is a work in progress, one that improves as systems continually change in the retrieval and haring of tissue and eye recipient information within these communities.

Introduction

These Guidelines are intended to assist health care professionals whose work is related to organ and/or tissue donation and transplantation. They contain methods of providing information about communication throughout the donation and transplantation process, including initial contacts, communication facilitation, and follow-up activities.

The principal aims of this document are:

  1. to provide guidelines for professionals about facilitating communication between members of donor families or living non-directed donors and the transplant candidates or recipients
  2. to inform donor families, living non-directed donors, transplant candidates, and t ransplant recipients about their options and opportunities regarding the types of communication opportunities available to them*
  3. to respect the decisions of donor family members, living non-directed donors, transplant candidates, and transplant recipients about written and verbal correspondence and in-person meetings*
  4. to assist professionals by providing consistent methods to ensure donor families, living nondirected donors, transplant candidates, and transplant recipients receive appropriate information about each other
  5. to document the wishes of donor families, living non-directed donors, transplant candidates, and transplant recipients about sending or receiving information and arranging further contacts*
  6. to continue to follow-up with donor families, living non-directed donors, and transplant recipients to offer them the option of receiving additional information or changing their minds about exchanging information*
  7. to provide written explanations of the donation and transplant communication process, together with guidance concerning various forms of support that may be available*
  8. to inform all who are involved that there are no legal reasons (including those related to the HIPAA) to prohibit communications of the type described in this document*
  9. to facilitate communication and contact as outlined herein.*

*These activities are to be carried out by the health care professionals.

The basic principles of these guidelines are:

  1. donor families, living non-directed donors, transplant candidates, and transplant recipients have the option to receive appropriate information about each other and to engage in mutually agreed-upon forms of communication
  2. health care professionals have a responsibility to facilitate the communication process between donor families, living non-directed donors, and transplant candidates or recipients who wish to communicate with each other in a timely manner
  3. health care professionals should respect the autonomy of donor families, living non-directed donors, and transplant candidates or recipients in the communication process.

The goals of these guidelines are:

  1. to identify the roles and responsibilities of health care professionals in providing information to donor families, living non-directed donors, and transplant candidates or recipients
  2. to provide a framework that will empower health care professionals to facilitate communication between members of these groups in a timely manner.

Communications Between Health Care Professionals and Donor Family Members of Deceased Donors and Transplant Recipients

  1. Initial Sharing of Information about Donor Families and Transplant Candidates/Recipients
    1. After the donation, donor families have the option to:
      1. receive basic information (age span*, gender, geographic area) about the transplant recipients, when available
      2. have documented for future reference that their decision about whether to receive information about the transplant recipients is respected and that special attention is paid to protect confidentiality if contact is not desired
      3. be notified that they will have the opportunity to change their minds in the future about communicating with the transplant recipients and how to do so.
    2. In the immediate post-transplant period, transplant recipients have the option to:
      1. receive basic information (age span*, gender, geographic location) about the donor and donor family
      2. have their wishes about whether to receive information about the donor and donor family documented for future reference and respected, with special attention paid to protect confidentiality if contact is not desired
      3. be notified that they will have the opportunity to change their minds in the future about communicating with the donor family.
    3. Health care professionals have a responsibility to:
      1. provide appropriate information to donor families and transplant candidates/recipients about the process of communication
      2. inform donor families and transplant candidates/recipients that they can communicate with each other if both parties agree
      3. inform individuals that the other intended party to the communication may not wish to receive or respond to such a communication and is not required to do so
        * Rather than an exact age, an age group such as child, teen, young or older adult is preferred by some OPO and transplant centers to better preserve confidentiality.
      4. present information in writing and include guidelines concerning standard formats for initiating and responding to communications (see brochure information in the back of this booklet).
      5. establish systems to ensure that appropriate and consistent information is provided in a timely manner to donor families and transplant candidates/recipients.
  2. Follow-Up
    1. For Donor Families
      Within one month of donation, health care professionals shall provide members of donor families with a written report confirming and explaining which organs and/or tissues were procured, or, if none, why not. (See “A Bill of Rights for Donor Families,” National Kidney Foundation, 1994.)

      During the first year after the loved one’s death, and for the years that follow, the OPO professionals should inform, assist and support the donor family in receiving information or making contact with their transplant recipient(s). As per OPO policy, regular updates may be requested from the transplant center program. Donor family members should be alerted that this information may include bad news (e.g., recipient death).

      After establishing a relationship through written and perhaps verbal communication, the donor family may decide that they want to meet the donor recipient. The OPO can be helpful in several ways. Having a discussion with a donor family services coordinator can help members of the donor family prepare form the meeting. Such professionals can help donor families determine if their expectations, fantasies, and goals of the meeting are realistic. For example: Are they emotionally prepared to handle disappointment? (See Table 1 for some typical considerations for donor family members in loss of anonymity when communication is made.) A pre-meeting discussion can include preparation for dealing with media or pressure from others and a post-meeting discussion can help donor family members sort out their feelings and reactions.

    2. For Transplant Recipients
      While recipients are recovering after surgery—and sometimes before—health care professionals can provide the recipient with basic demographics about the donor, such as gender, geographic location, age span and the cause of death. Some OPOs prefer to describe the cause of death only as traumatic or non-traumatic unless they are certain the donor family would not mind releasing the exact cause of death to the recipient. Sharing this news during hospitalization allows access to professionals who can help recipients normalize their feelings and anticipate new life experiences. Because the donor organ is part of the recipient as soon as he or she awakens from surgery, a desire to know about the donor may surface right before or soon after surgery.

      Prior to the discharge after transplantation, recipients should receive information from the health care provider about writing to the donor family and how the process is facilitated (see brochure information in the back of this booklet). This should be a standard part of the discharge process. When transplant coordinators complete paperwork for the organ procurement organization that recovered the organ, they provide recipient data and outcome data on a “Recipient Outcome Form.” The form is used for quality improvement purposes and outcomes collection. Most organ procurement organizations have some version of this form. The last section on the form includes an area for the recipient to send a message to the donor family. The form asks for social information such as recipient hobbies, marital status, or if the recipient has children or grandchildren. This is an easy way for the coordinator to relay information from the recipient to the donor family and an easy way for the recipient to acknowledge the gift or say thank you.

      It may help recipients to come to terms with their own complex feelings, to know that donating the organs of their loved ones is usually a source of comfort to donor families, as is an acknowledgement from recipients. Resources such as support groups, interactive Web sites, and buddies (other recipients who are willing to mentor a new recipient), as well as transplant center professionals, are available to help transplant recipients cope with their new situation and assist them in sending an acknowledgement to their donor family. This process can be explained in discharge packet literature.

      For recipients, the first year after transplant is one of transition. During this year, transplant professionals can remind recipients of their option to communicate with donor families. At a later date, recipients may need to initiate the communication through the transplant center professional.

      If the transplant recipient and donor family members have planned to meet, a pre- and post-meeting discussion can help them prepare for the meeting and debrief them after the meeting. This discussion can help recipients with conflicted emotions such as guilt and grief. (See Table 2 for some typical considerations of transplant recipients regarding loss of anonymity.) Transplant professionals should help recipients be aware of potential pressure from media or other sources that may offer to facilitate meetings for their own purposes without considering the best interests of the recipient.
  3. Later Follow-Up
    1. Approximately six months after donation, recovery professionals shall offer those donor families who requested initial information the opportunity to receive updates, if available, concerning the recipient(s). The request for updates about the recipient(s) can be conveyed by survey or in a letter. Professionals supporting recipients can offer to share the donor’s information that the donor consented to share, consistent with the hospital policy and their signed, informed consent.
    2. Where possible, approximately six months after donation, health care professionals shall offer, in writing, to members of donor families and transplant recipients, an opportunity to change their decision; if making this offer is not feasible, the professional should stand ready to respond to inquiries initiated by those who may independently change their minds. In either case, a request for “no further contact” should be documented in the official record.
    3. Health care professionals shall develop efficient and effective means of obtaining and transferring information about donor families and transplant recipients internally, within their own hospitals and OPOs, in order to expedite fulfillment of requests for information while simultaneously preserving appropriate confidentiality.
  4. Initial Written Communications Between Members of Donor Families and Transplant Recipients
    If members of donor families and transplant recipients wish to disclose their names and/or addresses to each other to begin direct communication, that disclosure should first be enacted by mutual agreement of both parties in writing. Any forms required by hospital and OPO center policy should be completed.
    1. MEDIUM: Cards, notes, e-mail, letters
    2. CONTENT: When suggesting information to be exchanged, the following can be suggested, but should not be limited to:
      1. Age of the donor or recipient
      2. Gender of the donor or recipient
      3. Immediate and extended family (including children)
      4. Occupation
      5. Geographical region of the country in which the person lived or is currently living
      6. Cause of death (for donor) or course of illness and need for the transplant (for recipient)
      7. Impact of donation or transplantation on the writer
      8. Impact of donation or transplantation on the family of the donor or transplant recipient
      9. Impact of donation or transplantation on the community of the donor or transplant recipient.
    3. TIMING: Written communications of this type can be prepared at any time, but might be most suitable when the author (donor family member or transplant recipient) has had some time to gain perspective on the overall experience. Transplant and donation professionals will facilitate communication anytime, and all efforts will be made to contact donor families or transplant recipients.
    4. PROCESS:
      1. Upon receipt of the communication, the health care professional designated as the point person should contact the person directly to whom the letter is addressed, or forward the communication to those professionals who are in contact with the person designated to receive the letter, in order to determine if that individual is willing to accept the communication in its present state.

        If given permission by the writer of the letter, the professional should make a copy of the communication, attach that copy to appropriate records or charts, and document the communication according to policies applicable within his or her agency. If not given permission, documentation can be made in the file that the effort was made.

        The professional should then enclose the communication in a sealed envelope and forward it to the addressee with a brief cover letter explaining the contents. If the letter is unread by the addressee, the professional should ask if he or she would like to receive the letter without the professional first reviewing the contents. The addressee is thereby informed of his or her options to open the sealed envelope and read the communication immediately, or keep it to open at some future time.

        Communications that are sealed should remain sealed until permission is obtained either from the intended recipient or from the author or reader intended to open the communication. The communication is forwarded in its original form (along with an explanation that it might contain information that is not anonymous in nature); documentation in the chart should reflect that a sealed letter was sent with the permission of the intended receiver.

        Communication may occur privately, without the use of transplant professionals as intermediaries, if both the donor and recipient choose private communication.

      2. If the intended transplant recipient or donor family member is hesitant to receive the communication without first having it reviewed by their health care provider, and makes known to the health care provider what he or she does not want to know, the professional should review the document and offer to contact the author of the communication to discuss its contents and any concerns that might arise.

        The author might then be encouraged to rewrite the communication in order to respond to those concerns. If the author modifies the communication so as to satisfy those concerns, then the provisions of paragraph IV, Subhead D, No. 1 apply.

        If the author will not modify the communication so as to satisfy those concerns, the professional can reaffirm the intended recipient’s unwillingness to receive the communication in its present form and return it to the author.

      3. If the intended recipient is unwilling to accept the communication in any form, the communication could be retained only with the writer’s permission—the letter is the writer’s property and should be returned unless the writer agrees to have it kept in the files of the health care professional. In the latter case, the intended receiver should be informed that the communication can be forwarded at any time in the future.
      4. Authors of written communications of this type should be informed by health care professionals that their communication has or has not been forwarded to the intended recipient. Authors should also be advised that even when a recipient has accepted and received their communication and appreciates their initiative, he or she may not wish to or may not be capable of reading it or responding at that time.
      5. 5. We recommend that initial communication remain anonymous, without the use of last names or contact information. If a different situation arises, the professional should ask the recipient if he or she wants the letter forwarded, explain that it contains personal information, and ask if that information should be blacked out. If the intended recipient requests for personal information to be blacked out, the author needs to be contacted and asked if it can be blacked out.
      6. No communication should be forwarded without approval from the transplant recipient and/or donor family. If the transplant recipient or donor family does not want to receive the communication, the forwarding organization will keep it on file with the writer’s permission. If the letter is returned, it will be kept on file with the writer’s permission. The sending agency will let the sender know that the letter was not delivered.
      7. If there is more communication after the initial letter, transplant recipients and donor families who desire anonymity will have the choice of communicating through the OPO and hospital. If they do not want anonymity, the donor family and transplant recipients can communicate directly with each other.
      8. Donor families and transplant recipients should be aware that assistance is available from their health care teams. Sometimes the professionals arrange for a peer/mentor to provide emotional support to the recipient or donor family. OPOs may review initial letters from transplant recipients to donor families. Transplant centers may review initial donor family letters to transplant recipients. If both the donor family and recipient request that their letters not be read initially, they should be forwarded without opening once both parties are counseled regarding the range of feelings that the letters may generate. This includes a possible request for more or closer contact, which could include both negative and positive emotions. Professionals should be sensitive to the fact that some transplant recipients and donor family members may not be comfortable if their letters have been read.

Living Donation: Communication Between Living Non-Directed Donors and Transplant Candidates or Recipients

  1. Some Important Similarities and Differences Between Living Non-Directed Donors and Family Members of Deceased Donors Like donor family members, living non-directed donors:
    1. are individuals unknown to their recipient
    2. have also experienced a loss, but a very different kind of loss
    3. may perhaps but not always desire to know the outcome of their donation
    4. may perhaps but not always desire to be thanked
    5. may have fears and misconceptions about the donation process
    6. may have underlying expectations of the recipient.
  2. Unlike donor family members, living non-directed donors:
    1. may experience different types of loss and grief than the donor family. (In most instances the living non-directed donor is not experiencing a death unless the recipient dies during surgery. Most likely the living donor loss is a short-term loss of physical function, family role, work and income.)
    2. are living individuals and are taking a different level of risk for themselves and others
    3. have had a longer amount of time (months or more) to make a decision to donate, whereas a donor family often will make a decision in a few hours. Even if families have had a discussion before the tragedy regarding intent to donate, when faced with reality they usually have only a limited amount of time to reaffirm their decision.
    4. may have less family support available since donating may have been questioned by loved ones
    5. may experience a more intrusive or solicitous outreach from local and national media.
  3. Prior to Transplant
    Living non-directed donors and transplant candidates should not have their identities disclosed prior to the donation and transplantation. Prior to the transplant operation is the best time for transplant center professionals to explain to both living non-directed donors and transplant candidates about the opportunity to correspond with each other after transplantation and the process involved. However, there may be instances when the living donor or recipient wants to send the other a card while they are both hospitalized. The professional should ask both parties if they would want to accept a written communication at this time and should be told that the contents will be reviewed by the professional to assure that they do not disclose identifying information and should have a discussion with the intended receiver regarding the emotions and feelings they may bring up (see Table 3, Discussion Guide).

    Currently there is no data regarding the various types of correspondence between living non-directed donors and recipients. The group encourages transplant centers to collect and document data about the communication experiences of the living non-directed donors and recipients so the process can be improved upon. Fairview Hospital in Minneapolis, which has transplanted the most living non-directed donors at the time of this writing, encourages the parties to wait six months before contacting each other to give them a chance to adjust to the operation and allow time for physical and emotional recovery. At a minimum, the transplant center can make recommendations.

    Prior to transplant, the option of communicating after transplant should be made known to both parties.

    The wishes of each party about communicating after the transplant should be documented and included in the medical charts.

    Risks and benefits of written, e-mail, telephone, and face-to-face contact should be explained in an informed choice (consent) process (see Table 2 and Table 3 for examples of such risks and benefits) and are believed to be mostly emotional in nature. (The actual risk of physical injury or harm by one party to the other is unprecedented and seems unlikely.) Psychological risks primarily have to do with the individual’s ability to cope with emotions that may be uncomfortable. For example, one person may be needier than another and ask for reassurance or support that the other cannot give. Other emotions that might arise could include feelings of anger or disappointment if the organ rejects, for example, or for any other reason. Information about risks, benefits, and procedures should be discussed often as part of the informed choice (consent) process.

    Everyone should be made aware that both parties must agree to communicate and either party can change his or her mind at any time. The parties should only divulge information that they are comfortable sharing.

    Suggestions on how to communicate should be included in written information given to both parties (see brochure information in the back of this booklet).

    Living non-directed donors may need or may benefit from talking with a professional or fellow donor about their experiences prior to donation to help them prepare emotionally and physically for the entire experience, including their expectations of the recipient.

  4. Post-Transplant Preparation for Communication
    Prior to leaving the hospital, information that was given pre-transplant should be reiterated to both parties.
    When the transplant center contacts the living non-directed donor for a routine follow-up, the center should again offer to facilitate communication if desired.

    The majority of the work group believes that the living non-directed donor and the recipient should decide on the timing of the first direct communication. Professionals can provide recommendations about the timing of communication.

    Transplant centers should develop a consent form that the donor and recipient can sign prior to direct communication (including the potential risks and benefits of such a meeting).

    There is no objection for the first contact to be in person, but both parties must agree beforehand to the meeting.

    If the transplant center does not advise communication for any reason, they still have a responsibility to convey their opinion and reasoning to both parties, but should not decide for the transplant recipients.

    The transplant center may serve as an intermediary for a face-to-face meeting, but the donor and recipient are not required to utilize the intermediary if they prefer to meet on their own. Most donors and recipients have indicated that it was helpful to have either staff or loved ones present during the first meeting.

    Counseling should be offered to address expectations of transplant recipients, living donors, and their immediate families.

    If both parties agree to exchange information directly, they should be permitted to do so after all the necessary releases to share names and addresses are signed in accordance with the transplant center policy. They do not need to involve the transplant center (or OPO if they are involved in the living non-directed donation) as intermediaries.

  5. Timing of Communication Post-Transplant
    The timing of communication should be determined by the living non-directed donor and the recipient.

    Periodic follow-up communication with the living non-directed donor and recipient by professionals can include a query about whether contact has taken place and what the outcome was, or if there is a desire for the center to facilitate such contact.

    Health care providers need to decide with the living non-directed donors and the transplant recipients about what is shared with and without informed consent. Most living non-directed donors want to know whether the organ is functioning and have found this information beneficial at the time of their hospitalization.

    It is recommended that an informed consent template for the living non-directed donor and recipient should be developed to include a checklist of recipient/donor information that may or may not be shared within the confines of confidentiality and included in the transplant center policy.

    The decisions of the living non-directed donors and the transplant recipients concerning whether and how to communicate should be documented in the medical records for future reference.
  6. Follow-Up After Communication
    The appropriate transplant professionals should contact the living non-directed donor and recipient to receive feedback on how the communication has gone. Such feedback might include items such as the following:
    1. Was there something the parties wished they had known before contact that would have been helpful to prepare for?
    2. Is there anything the transplant team should or could have told them to improve upon the experience?
    3. What was the impact of the meeting or not meeting if one party did not want to?
    4. Was it a satisfying experience?
    5. What was helpful about meeting?

Table 1. DISCUSSION GUIDE FOR DONOR FAMILIES OF DECEASED DONORS REGARDING COMMUNICATIONS OR CONTACTS AND LOSS OF ANONYMITY

Potential Benefits

Potential Risks

Positive emotional responses

Negative emotional responses

An opportunity to express joy Unpredictable consequences:
  • Unwanted communication
  • Unable to end contact
An opportunity to know that the gift made a difference Differences:
  • Cultural
  • Religious
  • Moral
  • Social
An opportunity to continue the Knowing that a part of the family grieving process Knowing that part of the family member was present
Identifying or humanizing in a small way with a person with whom you may have had an extended anonymous relationship Pain, sadness, resentment, a feeling of responsibility for the gratitude felt by the recipient
Control & empowerment Differences in response of family members
Ease of direct contact, i.e., removing the “middleman” Anxiety that the family members may not think the recipient was worthy of the gift
An opportunity to share the family member with the recipient Anxiety about what to say and/or do
Reinforcing the decision to donate Revisiting the death of the family member
Increasing donation Decreasing donation
An opportunity to “be with” a part of the family member Reaffirming the absence of the deceased family member

 

Table 2. DISCUSSION GUIDE FOR TRANSPLANT RECIPIENTS REGARDING COMMUNICATIONS OR CONTACTS AND LOSS OF ANONYMITY

 

Potential Benefits

Potential Risks

Positive emotional responses

Negative emotional responses

An opportunity to express gratitude Unpredictable consequences:
  • Unwanted communication
  • Unable to end contact
An opportunity to express sympathy Differences:
  • Cultural
  • Religious
  • Moral
  • Social
An opportunity for closure Belief of donor family that family member lives on in recipient
Having a name to call a person who may have had an extended anonymous relationship Donor family ownership of organ
Control and empowerment Differences in response of family members
Ease of direct contact i.e., removing the “middleman” Anxiety that the donor family will not see them as worthy of the gift
An opportunity to learn more about the donor Anxiety of what to say and/or do
  Donor family sadness or resentment

 

Table 3. DISCUSSION GUIDE FOR LIVING DONORS REGARDING COMMUNICATIONS OR CONTACTS AND LOSS OF ANONYMITY

 

Potential Benefits

Potential Risks

Positive emotional responses

Negative emotional responses

An opportunity to express altruism and a sense of self-worth Unpredictable consequences:
  • Unwanted communication
  • Unable to end contact
An opportunity to know that the gift made a difference Differences:
  • Cultural
  • Religious
  • Moral
  • Social
An opportunity to incorporate the loss of one’s kidney and what that might mean to an individual Acknowledging that there is a loss and dealing with the emotions
Identifying or humanizing in a small way with a person with whom you may have had an extended anonymous relationship Potential pain, sadness, anger, a feeling of responsibility for the extended anonymous relationship gratitude the recipient feels
Control and empowerment Differences in response of recipient and loss of control about how the recipient treats the gift
Ease of direct contact, i.e., removing the “middleman” Anxiety that you or others may not think the recipient was worthy of the gift
An opportunity to share one’s life and motivation with the recipient Anxiety about what to say and/or do
Reinforcing the decision to donate Emotional letdown if the transplant fails
Increasing donation Decreasing donation
An opportunity to revisit the given organ and see it functioning Emotional letdown if the organ is not working properly

Resources

National Donor Family Council (NDFC)
www.kidney.org/transplantation/donorfamilies/index.cfm

The oldest and largest national voluntary organization dedicated exclusively to the needs of tissue, eye and organ donor families. The mission of the NDFC of the National Kidney Foundation is to enhance the sensitivity and effectiveness of the organ and tissue procurement process, to provide opportunities for families to grieve and grow, and to utilize the unique perspective and experiences of these families to increase organ and tissue donation. In addition to serving as an advocate and providing support for donor families, the council develops high quality programs to meet the ongoing needs of families and those professionals involved in their care. Membership in the council is free.

For Those Who Give and Grieve (newsletter)
For Those Who Give and Grieve (book)
Para Los Que Dan Y Sufren (book)
Brain Death: A Simple Explanation (booklet)
Honoring Each Other’s Grief: Nurturing a Relationship While Coping with the Death of a Child (booklet)
The Grief Journey: The Death of a Spouse or Lifetime Companion (book)
Your Loved One’s Gifts: Understanding Tissue Donation (booklet)
Bill of Rights for Donor Families (brochure)
Making a National Donor Family Quilt Patch (brochure)

transAction Council
www.kidney.org/transplantation/transaction/transactioncouncil.cfm

The transAction Council of the National Kidney Foundation is proactive in advocating for a better quality of life for transplant recipients and increased availability of all organs for transplantation. Membership is free and is open to all individuals and their families who are awaiting or have received a life-saving or life enhancing organ transplant, as well as health care professionals, legislators, and other interested individuals.

Transplant Recipients’ Bill of Rights and Responsibilities (booklet and poster)
Waiting for a Transplant (book)
From Illness to Wellness: Life After Transplantation (book)
Transplant Chronicles (e-newsletter)
Take Time to Talk: A Family Discussion Guide about Organ and Tissue Donation (booklet, English and Spanish)

Living Donor
www.kidney.org/transplantation/livingdonors/donorcouncil.cfm

The National Kidney Foundation (NKF), leader in patient education and support, is developing new ways to support living organ donors, potential donors, health care professionals, family and friends. Through educational and support resources, consensus conferences with medical professionals and legislative initiatives, the NKF works to represent living donor views on:

  • Education and information needs for families and professionals
  • Public policy issues to improve the care provided to donors
  • Medical concerns before, during and after donation
  • Financial, employment and insurance issues before, during and after donation
  • Emotional issues surrounding living donation
  • Relationships with recipients and family members
  • The live donor experience

Elements of Disclosure for Potential Living Donor (fact sheet)

Writing to Donor Families and Living Donors
A Simple Guide for Organ or Tissue Transplant Recipients

After your transplant, you may want to share your feelings of appreciation by writing to your donor or family of your donor. Deciding to write is a personal choice and can be done whenever you are ready. Should you decide to write, this brochure offers tips on what to say, sample phrases and sentences to help you get started. | ITEM # 13-60-0636

Writing to Transplant Recipients
A Simple Guide for Donor Families and Living Donors

If you are a living donor or a donor family, you have the option of writing to the transplant recipient. You might want to share your feelings with the recipient, but may feel uncomfortable doing so without some guidance. This brochure provides information to help you make the right decision. Remember, there is no time limit on sending a letter—you can do it whenever you are ready. | ITEM # 13-60-0637

Visit our online store to order copies of the above materials.


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