1. October 28, 2014 Human Organ and Tissue Donation Act: Implementation and Opportunities for Integration with Advance Care Planning 25 th Annual Palliative Education and Research Days Sherri Kashuba and Jamie Tycholiz Alberta Health

2. Disclosure Presenter/Faculty: Sherri Kashuba Jamie Tycholiz There are no relationships that pose a conflict of interest to declare AND this program has been developed without support from commercial entities. 2

3. Session Objectives Share information about the status of implementation of the Human Tissue and Organ Donation Act Provide an overview of the creation of the Alberta Organ and Tissue Donation Registry Discuss alignment and integration of in advance care planning, end-of-life care organ and tissue donation ac ross jurisdictions 3

4. Human Tissue and Organ Donation Act Bill 207 Proclaimed Nov. 7, 2013 New sections to establish the Registry and the Agency 4

5. Why a registry? Requests from the public Promotes conversations about organ and tissue donation among families and friends Provides means for Albertans to document their decision to be an organ and/or tissue donor Represents only one element of leading organ and tissue donation systems 5

6. Donation Registries- Other Jurisdictions 41 countries have active deceased donation registries –Oldest – Israel, established in 1978 –BC, MB, ON, QC, NS have registries Two types: –Donor: Record person’s decisions about deceased donation Decisions may include yes only; or yes and no Designed to promote deceased donation –Non-donor: Designed to be a tool to express objection only Often used in jurisdictions with presumed consent legislation Most registries are national –Canada, US and Iran have regional registries 6

7. Effective Registry Design Criteria Registered consent is considered legally binding consent Includes consent for tissue donation Individuals can enroll through a dedicated Web site DMV enrolls donors via driver’s license and ID card applications and renewals No follow-up step required for DMV or on line enrollment DMV exports donor records to registry database Organ, eye, and tissue recovery agencies can effectively access donation registry According to US Donor Designation Collaborative 7

8. Alberta Organ and Tissue Donation Registry (AOTDR) Launched: – April 22 – on line –June 9 – Registry Agent offices 8 Type: Donor; affirmative only Eligibility: – Albertans aged 18+ years

9. AOTDR Identity verification: 9

10. AOTDR Donation Choices: –All organs and tissues –Specific organs and/or tissues –Whole body for medical education and scientific research 10

11. AOTDR – Uptake 11

12. Seven in ten Albertans strongly approve of organ and tissue donation More than 4 in 10 Albertans have heard about the Registry 12 Public Awareness / Acceptance Environics, September 2014

13. Planning for a Provincial Organ and Tissue Donation Agency 13

14. Intersecting Points of ACP/ OTD Approaches Across Jurisdictions 14

15. ACP Across Canada British Columbia Province of British Columbia - Making Future Health Care Decisions (ACP Guide/ My Voice) Alberta Alberta Health Services – Advance Care Planning and Goals of Care resources (www.conversationsmatter.ca)www.conversationsmatter.ca Saskatchewan Regina Qu'Appelle Health Region, Advance Care Planning Manitoba Winnipeg Regional Health Authority - Advance Care Planning Prince Edward Island Health PEI - Advance Care Planning 15

16. ACP Across Canada Ontario Advance Care Planning Workbook - Ontario Version. The workbook has been adapted to the Ontario legal framework Advance Care Planning Quick Guide - Ontario Version. The Quick Guide has been adapted to the Ontario legal framework Advance Care Planning In Relation to Health Care Consent: Training Materials Ontario Seniors’ Secretariat – A Guide to Advance Care Planning Nova Scotia Nova Scotia Hospice Palliative Care Association - New Advance Care Planning Resources 16

17. OTD/ ACP Approach (Comparison) ProvincePractice NB Home Health care program have policies & procedures specific to home care; staff are asked to discuss advanced directives & ask about OTD MB Many are ineligible D/T cancer diagnosis; limited opportunity but families are referred to the “proper source” BC VIHA PCU made efforts to increase eye donations several years ago; agree with grouping ACP & OTD together as currently it is not in “My Voice” guide ONT Health care providers struggle with understanding their role in both OTD and ACP conceptually and with the aligned conversations; legal consulted SK Included info on OTD in their public workbook on ACP (My Voice-Planning in Advanced for Health Care Choices) & is discussed with public 17

18. In Alberta… 18 Home living: Home Living End-of-life orientation, organ and tissue donation is touched on as part of advance care planning and new staff are shown how to access more information on the palliative.org website (EZ) Hospice: ACP Provincial Policy April 2013 Evaluation/ developments continue AHS Provincial Work: EZ targets all families/patients for tissue donation/ updated forms to prompt clinicians in TPCU/hospices; Calgary only targeting ocular tissue

19. ACP / OTD Palliative Care Australia Position Statement Supporting greater capacity to engage in community discussions around death and dying may offer benefits that extend to other social interests & provide a process for realizing preferences around OTD to support better uptake HPNA Position Statement PC providers including hospices need to adopt policies for promoting & obtaining OTD when possible Education & info re OTD must be discussed in context of ACP & advanced directives 19

20. Other…cont’d College of P & S ONT (Decision making for EoL Policy) Physicians encouraged to discuss the NB of ACP with their patients, and to provide medical information and opportunity for discussion; OTD legislation is related within the policy CHPCA/ Assumptions & Competency Exam Assists the person and family to prepare for the time of death including organ, tissue, and body donation; provides guidance to the persons/family in Advance Directives CNA Position Statement Supports ACP and OTD through ongoing education, research, policy development/ advocacy. 20

21. Barriers & Issues Attitudes of providers/ families (protective, cultural) Lack of standard policies/ practice or info of process Fear of disrespecting pt. wishes in absence of discussion Interventions aimed at improving donation rates are not based on sound theoretical frameworks Few people discuss their OTD wishes with families Spencer, M. 2012.

22. Recommendations for Practice of OTD in PEOLC HP need to be knowledgeable about donation process HP should hold positive views of OTD PCU consider donation interest groups Provide patients/ relatives with literature to raise awareness (in addition to conversation) Introduce OD as part of admission process to PCU or PC team (all PC professionals should be aware of NB of OTD and be able to discuss it with pt./ family) PCU have up to date info of local OTD policies and guidelines Consider needs of families of those who agree to donation; proper information, time and Base interventions of behavioral theories and change strategies Spencer, M. Clinical review

23. Combining ACP/ GCD + OTD; Where and How? Cognitive overload? Public awareness? Fits with existing legal FW? Fit with Primary care? Make a case for developing education to address these together Value of public awareness Current ACP in OPG/ overlay with PD Need for clarity for public Legal confusion and risk averse public Primary care engagement/ “people are jaundiced with this stuff”….

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29. Absolute Contraindications for Tissue (Ocular and Non- Ocular) Referral If your patient has any of the following absolute deferral criteria they can not donate tissue for transplantation so no referral to the Southern Alberta Organ and Tissue Donation Program is required: Age > 80 years HIV positive HTLV 1 or 2 positive Hepatitis B surface antigen or core antibody positive Hepatitis C positive Active Tuberculosis Active Endocarditis Active Encephalitis or Meningitis Antibiotic Resistant Organisms: VRE, MRSA infection or colonization Bacteremia, Fungemia, Viremia Sepsis or Septic Shock: positive blood cultures with organ failure < 7 days before death Creutzfeld Jacob Disease IV drug user (in last 5 years) 29

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31. References Alberta Health Services (2014). HOPE and SAOTDP statistics Canadian Blood Services. Organ and Tissue Donation Transplantation Report on the Ethics Consultation January 20 ‐ 21, 2011, Ottawa, Canada. Canadian Institute for Health Information (2014). Canadian Organ Replacement Register Annual Report: Treatment of End-Stage Organ Failure in Canada, 2003 to 2012. Donate Life America (2013) National Donor Designation Report Card - The Challenge to Register More Organ, Eye and Tissue Donors Environics Research Group. Organ and Tissue Donation Registry Report. September 2014 New South Wales Ministry of Health (2011). Increasing Organ Donation in NSW Discussion Paper. NHS Blood and Transplant (2009). Trends in Organ Donation Consent Rates. www.organdonation.nhs.uk/statistics/presentations/recent_and_forthcoming/index.asp Ontario Ministry of Health and Long-Term Care. Organ and Tissue Donation and Transplantation; 2010 Annual Report of the Office of the Auditor General of Ontario. Rosenblum AM, Ho-Ting Li A, Roels L, Stewart B, et al (2012). Worldwide variability in deceased organ donation registries. Transplant International 25, 801–811. Salim A, Malinoski D, Schulman D, Desai C, Navarro S, et al. (2010). The Combination of an Online Organ and Tissue Registry With a Public Education Campaign Can Increase the Number of Organs Available for Transplantation. Journal of Trauma, 69: 451-4. Spencer, M. (2012) The barriers to organ and tissue donation in palliative care. End of Life Journal, Vol. 2, No 2. Statutes of Alberta (2013). Human Tissue and Organ Donation Act 31