Human Organ and Tissue Donation Act:
Implementation and Opportunities for Integration
with Advance Care Planning
25th Annual Palliative Education and Research Days
Sherri Kashuba and Jamie Tycholiz
Alberta Health
October 28, 2014
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.
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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
across jurisdictions
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Human Tissue and Organ Donation Act
• Bill 207
• Proclaimed Nov. 7, 2013
• New sections to establish
the Registry and the
Agency
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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
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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
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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
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Alberta Organ and Tissue Donation Registry
(AOTDR)
Launched:
– April 22 – on line
– June 9 – Registry Agent
offices
Type: Donor; affirmative only
Eligibility:
– Albertans aged 18+ years
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AOTDR
Identity verification:
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AOTDR
Donation Choices:
– All organs and tissues
– Specific organs and/or tissues
– Whole body for medical education and scientific research
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AOTDR – Uptake
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Public Awareness / Acceptance
•
Seven in ten Albertans strongly approve of organ and tissue
donation
72%
16%
8%
2%
Strongly approve
•
Somewhat approve
Somewhat/strongly
disapprove
Don't know enough
to say
More than 4 in 10 Albertans have heard about the Registry
45%
42%
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Sept 2014
Environics, September 2014
June 2014
Planning for a Provincial Organ
and Tissue Donation Agency
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Intersecting Points of ACP/ OTD
Approaches Across Jurisdictions
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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)
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
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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
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OTD/ ACP Approach (Comparison)
Province Practice
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
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In Alberta…
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
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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
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Other…cont’d
College of P & S ONT Physicians encouraged to discuss
(Decision making for the NB of ACP with their patients,
EoL Policy)
and to provide medical information
and opportunity for discussion; OTD
legislation is related within the policy
CHPCA/ Assumptions Assists the person and family to
& Competency Exam 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.
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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
.
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
Combining ACP/ GCD + OTD; Where
and How?
•
•
•
•
•
•
•
•
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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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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)
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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
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