The Canadian Council for Donation and Transplantation Tissue Donation Potential Beyond Acute Care Report © 2006 The Canadian Council for Donation and Transplantation This report may be reproduced in its present format without permission. Any alteration of contents must be approved by the Canadian Council for Donation and Transplantation. For reprints, please contact: The Canadian Council for Donation and Transplantation 1702, 8215 112 Street Edmonton, AB, Canada T6G 2C8 Telephone: 780 409-5651 Email: [email protected] www.ccdt.ca August 2006 ISBN 978-0-9738718-9-0 The Canadian Council for Donation and Transplantation (CCDT) assumes no responsibility or liability for any consequences, losses or injuries, foreseen or unforeseen, whatsoever or howsoever occurring, which might result from the implementation, use or misuse of any information or recommendations in the report, Tissue Donation Potential Beyond Acute Care. The views expressed herein do not necessarily represent the views of the CCDT and/or the federal, provincial or territorial governments of Canada. Production of this advice/report has been made possible through a financial contribution from Health Canada. Executive summary The Canadian Council for Donation and Transplantation (CCDT) was formed in 2001 with a mandate to develop advice for the Conference of Deputy Ministers of Health on issues and strategies related to organ and tissue donation and transplantation in Canada. The principle mandate of the Donation Committee of the CCDT is to ensure that all individuals who wish to give a gift of organ and tissue donation be given the opportunity to do so. To address this mandate, the Donation Committee strives to identify and eliminate barriers that prevent opportunities for families to donate tissues and organs of their deceased relatives. An analysis of the number of potential tissue donors in Canada undertaken by the Canadian Institute of Health Information (CIHI) under the direction of the Donation Committee determined that approximately half of deaths in Canada occurred outside of the acute care setting, the traditional location for obtaining consent for organ and tissue donation. Recognizing the potential for donation from these non-acute care settings, the Committee established an initiative, Donation Potential Beyond Acute Care (DPBAC) and a Steering Committee to guide this work. As a preliminary step, the DPBAC Steering Committee assessed the current potential for donation beyond acute care in Canada and found such potential to be viable. The Steering Committee then desired an environmental scan be conducted to determine strategies for realizing this potential in the “pre-hospital/in the field” environment, such as the home, scene of a motor vehicle accident, or in the emergency department prior to admission. The focus of the scan was on the following professional groups: paramedics, emergency department staff, coroners/medical examiners, and funeral home directors. A targeted literature search and interviews with stakeholders in these professional groups was undertaken to collect information on current practices, issues and barriers, and possible solutions that would facilitate donation. This document is the final report of the DPBAC environmental scan. Recommendations arising from the scan include the following options for Canadian jurisdictions: Develop awareness and social marketing campaigns that inform the public about tissue donation and stress the importance of informing loved ones about their personal wish to become a donor. Provide tissue donation information targeted specifically to professional groups providing end-of-life services outside of acute care settings. Establish processes among organ and tissue procurement organizations to ensure that expressed intent for donation routinely includes tissue donation in addition to organ donation, and that tissue donation is offered when families are approached for organ donation. Implement policies and procedures to ensure paramedics, emergency department personnel, and medical examiners and coroners routinely provide family contact information of potential donors to tissue procurement organizations. Ensure privacy legislation legally protects and enables professionals who share family information of deceased potential donors with procurement organizations (i.e., extend Routine Notification Request or similar legislation to all end-of-life professionals outside of the acute care setting). To support the above directions, it is recommended that the CCDT: Develop a public awareness and social marketing template that includes donation potential beyond acute care, and makes the template available for adoption or adaptation by programs, provincial governments or non-profit organizations across the country. As well as addressing the information needs of the public, end-of-life service providers should be specifically targeted. Work with and support the national professional associations of end-of-life service providers to increase knowledge and positive attitudes regarding organ and tissue donation potential among their memberships, and promote routine referral to tissue procurement organizations as standard leading practice for end-of-life professionals. Further explore the issue of privacy legislation as it relates to information sharing between end-of-life service providers and tissue procurement organizations and, depending on the results, highlight to the Conference of Deputy Ministers of Health the need for protective and enabling legislation. i Table of Contents Executive summary........................................................................................................................................ i Background ...................................................................................................................................................1 Methodology..................................................................................................................................................3 Issues affecting all end-of-life professionals .................................................................................................4 Support for tissue donation.....................................................................................................................4 Donor intent ............................................................................................................................................5 Registries................................................................................................................................................6 Presumed consent..................................................................................................................................6 Social marketing .....................................................................................................................................7 Family physicians ...................................................................................................................................7 Internet....................................................................................................................................................8 Required referral legislation....................................................................................................................8 Designated requesters ...........................................................................................................................8 Barriers and strategies affecting specific groups ........................................................................................10 Paramedics...........................................................................................................................................10 Emergency department ........................................................................................................................10 Medical examiners and coroners..........................................................................................................11 Funeral directors...................................................................................................................................14 Current Canadian practices, initiatives, and recommendations..................................................................15 Awareness of tissue donation...............................................................................................................15 Public..............................................................................................................................................15 Health care professionals...............................................................................................................16 Recommendations .........................................................................................................................16 Specific strategies for end-of-life professional groups..........................................................................17 Paramedics ....................................................................................................................................19 Emergency department..................................................................................................................20 Medical examiners and coroners ...................................................................................................23 Funeral directors ............................................................................................................................24