STANDING COMMITTEE ON HUMAN SERVICES SECOND REPORT OF THE TWENTY-EIGHTH LEGISLATURE Inquiry into Organ and Tissue Donation November 28, 2016 LEGISLATIVE ASSEMBLY OF SASKATCHEWAN

Composition of Committee Dan D’Autremont, Chair Cannington Nicole Rancourt, Deputy Chair Prince Albert Northcote David Buckingham Saskatoon Westview Danielle Chartier Saskatoon Riversdale Mark Docherty Regina Coronation Park Muhammad Fiaz Regina Pasqua Roger Parent Saskatoon Meewasin Hon.

Nadine Wilson Saskatchewan Rivers Former Committee Member Greg Lawrence, Chair Moose Jaw Wakamow Other Participating Members Tina Beaudry-Mellor Regina University Jennifer Campeau Saskatoon Fairview Lori Carr Estevan David Forbes Saskatoon Centre Lisa Lambert Saskatoon Churchill-Wildwood Gene Makowsky Regina Gardiner Park Warren Michelson Moose Jaw North Eric Olauson Saskatoon University Randy Weekes Biggar-Sask Valley

Table of Contents Executive

Summary ...................................................................................................................................... 1 Terms of Reference ....................................................................................................................................... 2 Public Hearings ............................................................................................................................................. 3 Terminology .................................................................................................................................................. 4 Introduction ................................................................................................................................................... 5 Jurisdictional Comparison ............................................................................................................................ 5 Deceased Donation ................................................................................................................................... 5 Living Donation ........................................................................................................................................ 6 Organ Transplants Performed in Saskatchewan ........................................................................................... 6 Organizations Coordinating Organ Donation ............................................................................................... 6 Canadian Blood Services .......................................................................................................................... 6 Saskatchewan Transplant Program ........................................................................................................... 7 Organ Donation Process Overview ............................................................................................................... 7 Key Components of Systems with High Donation Rates ............................................................................. 8 Addressing Organ Donation Rates ................................................................................................................ 9 Stand-Alone Agency ................................................................................................................................. 9 Donation Specialists ................................................................................................................................. 9 Donation Physicians ............................................................................................................................. 9 Donation Coordinators ....................................................................................................................... 10 Improving Identification ......................................................................................................................... 10 Donation After Cardiocirculatory Death ............................................................................................ 10 Increasing Donation by Seniors ......................................................................................................... 11 Improving Referral ................................................................................................................................. 11 Mandatory Referral ............................................................................................................................ 12 Improving Consent ................................................................................................................................. 12 Obtaining Family Approval ............................................................................................................... 13 Presumed Consent .............................................................................................................................. 14 Registries ............................................................................................................................................ 15 Public Awareness Campaigns ............................................................................................................ 16 School Curriculum ............................................................................................................................. 16 Improving System Capacity ................................................................................................................... 17 Coordination ....................................................................................................................................... 17 Technology ......................................................................................................................................... 18 Geography .......................................................................................................................................... 18 Performance Measurement and Accountability ................................................................................. 18 Improving Living Donation Rates .......................................................................................................... 19 Legislation................................................................................................................................................... 19 The Human Tissue Gift Act, 2015 ........................................................................................................... 19 The Health Information Protection Act .................................................................................................. 20 Bill C-223 — Canadian Organ Donor Registry Act............................................................................... 20

Summary of Presentations .......................................................................................................................... 21

Summary of Written Submissions .............................................................................................................. 28 Recommendations ....................................................................................................................................... 29 References ................................................................................................................................................... 31 Appendix 1: List of Presenters ....................................................................................................................... i Appendix 2: Documents Received by the Committee .................................................................................. ii Written Submissions ................................................................................................................................. ii Responses to Follow-up Questions .......................................................................................................... iii Appendix 3: Dissenting Opinion.................................................................................................................. iv

Standing Committee on Human Services Second Report of the Twenty-Eighth Legislature 1 Executive

Summary The Standing Committee on Human Services conducted an inquiry respecting improving the rate of organ and tissue donation in Saskatchewan from May, 2016 through November, 2016. Public hearings were held in both Regina and Saskatoon, and the committee heard 15 presentations in total. Twenty-six written submissions were received. After careful consideration of the testimony and written materials provided, the committee makes ten recommendations to improve the rate of organ and tissue donation in Saskatchewan. These recommendations are listed on page 29.

Definitions of common terms used in this report are provided on page 4. Themes emerging from the hearings are outlined on pages 5 through 20, and summaries of individual presentations to the committee begin on page 21.

Standing Committee on Human Services Second Report of the Twenty-Eighth Legislature 2 Terms of Reference On May 19, 2016, the Legislative Assembly of Saskatchewan ordered: That the Standing Committee on Human Services, in accordance with rule 149 of the Rules and Procedures of the Legislative Assembly of Saskatchewan, shall conduct an inquiry and make recommendations to the Assembly respecting improving the rate of organ donation in Saskatchewan; and That the said committee shall hold public hearings to receive representations from interested individuals and groups, and report its recommendations to the Assembly by November 30, 2016. 1 On June 8, 2016, the Legislative Assembly appointed Danielle Chartier to the committee for the duration of the inquiry through the following order: Ordered, That the membership for the Standing Committee on Human Services shall be expanded to eight members with the addition of the Member for Saskatoon Riversdale (Ms.

Chartier) for the duration of the inquiry concerning the rate of organ donation in Saskatchewan as ordered by the Assembly on May 19, 2016.2 The steering committee, consisting of Greg Lawrence, Chair and Nicole Rancourt, Deputy Chair, met on May 31, June 6, and June 15, 2016 to determine how to proceed with the above order. On June 15, 2016, the Standing Committee on Human Services adopted the steering committee’s report outlining the committee’s work plan.

This report included the dates and locations for the public hearings as well as the deadlines for the public to submit documents and request to make oral presentations. A province-wide media release was sent to 91 newspaper, radio, and television outlets on June 21, 2016 to inform the public of the hearings and invite input. Subsequent media reminders were sent in advance of public hearings. Twitter posts reminded the public of submission deadlines and provided information on committee progress. An informational flyer was distributed to participants in the Transplant Trot event on June 20, 2016.

An advertisement giving notice of the committee’s hearings was placed in each Saskatchewan daily newspaper on July 16 and August 13, 2016. The Leader-Post and The StarPhoenix published the advertisement again on August 20. Each Saskatchewan weekly newspaper published the advertisement during the week of August 8 or August 15, 2016, and the advertisement ran on Facebook from August 15 to September 14. Information was also updated regularly on the Legislative Assembly of Saskatchewan website.

On June 6, 2016 the steering committee approved a list of stakeholders to be invited to make presentations and/or written submissions to the committee, and on July 13, 2016 these letters were sent out. Notices regarding the hearings were also placed in all the participants’ packages at the Transplant Trot fundraising event in Regina on June 20, 2016. Once the deadline for oral presentations had passed on September 2, 2016, the steering com