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Potential Solutions to Increase Canada’s Organ Donation Rates

There is little argument that Canada’s transplant rates are too low, but many don’t agree on exactly what we need to do first to begin realize change. Understanding the research can shed light on the pros and cons of today’s most popular ideas.

What kind of national strategy do we need?

Further, this strategy could provide the transparency and accountability not currently in place by ensuring the implementation of best practices and mandatory data gathering and monitoring.

The Case for Organ Donation Legislation

As acknowledged by the Organ Donation and Transplantation in Canada System Progress Report (https://blood.ca/sites/default/files/ODT_Report.pdf), a “formal, integrated clinical governance structure for national ODT (organ donation transplantation) programs and services could bring a greater roles and responsibilities for all users of the system, as well as a catalyst for system performance improvements while advancing higher-quality care, greater efficiency and reduced costs”. Currently, in the absence of a formal structure, Canadian Blood Services has taken on some of this role. However, as Dr. Phil Halloran, transplant specialist, stated:

“Imagine if they asked a bunch of transplant people to run the blood transfusion system. That would be laughable,”(https://www.theglobeandmail.com/life/transplant-specialist-blasts-inadequate-organ-donor-proposal/article25581256/?arc404=true)

The United States has the United Network for Organ Sharing, that manages the nation’s organ transplant system (https://www.unos.org/).

Spain has the National Transplant Organization, which belongs to the Spanish Ministry of Health, Social Services and Equality (https://www.ont.se).

Australia has The Organ and Tissue Authority (OTA), which is an independent statutory agency within the Australian Governement Health portfolio that manages the implementation of the national reform programme.(http://www.donatelife.gov.au/about-us)

Recognizing the importance of a national strategy, New Zealand has recently announced as a strategy priority to establish a national agency to lead deceased organ and transplantation. (http://www.health.govt.nz/system/files/documents/publications/increasing-deceased-organ-donation-and-transpantation_.pdf)

This agency will have a “a clear responsibility to increase donation and transplantation.”

a) Background on Canada’s Organ Donation System:

  • In Canada, health care is managed at the provincial level, and each province has its own organ donation and transplant system
  • Each individual system sets its own policies for organ allocation which is then implemented by an organ procurement organization
  • Canada does not have a central registry for persons awaiting an organ or registry of potential donors
  • In 2001, the Canadian Council for Donation and Transplantation was appointed the role of overseeing and advising on a national strategy to improve organ donation.
  • In 2008, the Canadian Blood Services merged with the CCDT to take over this mandate.
  • To date, there is no central national organization responsible and accountable for deceased organ donation in Canada.
  • Bill C-223 was one of Canada’s attempt at a national legislation for organ donation

b) What is Bill C-223?

Source: https://openparliament.ca/bills/42-1/C-223/

Bill C-223 is one of Canada’s attempt at national legislation for organ donation. It was introduced as a private member’s bill by Ziad Aboultaif (Conservative member) and defeated as of June 15, 2016. The purpose of this enactment was to establish the Canadian Organ Donor Registry, which compiles information on organ donors and recipients. The enactment also calls for the development of a national strategy for the purposes of promoting organ donation. Lastly, it mandates an annual report. It was defeated by a vote of 171 against and 131 in favour.

Criticisms against:

c) Canada’s National Organ Transplant Act

Source: https://www.gpo.gov/fdsys/pkg/STATUTE-98/pdf/STATUTE-98-Pg2339.pdf

The National Organ Transplant Act of 1984 is a public law that was first approved on October 19 1984 in the United States. There were four main components to it including:

  1. Establishment of a Task Force on Organ Procurement and Transplantation
  2. Provide support, funding or contract for:
    1. Qualified organ procurement organization
    2. Organ Procurement and Transplantation Network
    3. Scientific registry of the recipients of organ transplants.
  3. Prohibit the selling organs
  4. Miscellaneous
    1. National registry of voluntary bone marrow donors

d) National Strategy/Legislation Additional Reading

https://beta.theglobeandmail.com/opinion/it-takes-more-than-laws-to-boost-organ-donations/article33639030/?ref=http://www.theglobeandmail.com&

http://canadianbioethicscompanion.ca/the-canadian-bioethics-companion/chapter-7-organ-donation/

https://beta.theglobeandmail.com/life/health-and-fitness/transplant-systems-failings-decried/article721088/?ref=http://www.theglobeandmail.com&

“UNOS and OPTN aggressively advocate and promote organ donation. They set national standards for the collection of organs (Canada has no such standards), they collect up-to-date national data (in Canada, data sharing is voluntary) and they distribute organs based on need, irrespective of state boundaries (in Canada, interprovincial exchanges are rare).”

https://www.theglobeandmail.com/news/national/canada-to-create-organ-donor-system/article4222831/?arc404=true

Out of the three registries mentioned here, only the living paired exchange registry is active.

https://www.theglobeandmail.com/life/transplant-specialist-blasts-inadequate-organ-donor-proposal/article25581256/?arc404=true

https://books.google.ca/books?id=BzS391nTZJwC&pg=PA18&lpg=PA18&dq=halloran+and+organ+donation&source=bl&ots=C8rzAgxVZ7&sig=-yG8lSLZNbHTbWtu7MmMZ6LsRdA&hl=en&sa=X&ved=0ah-UKEwjQz5fsgdXWAhVi8IMKHSu7Clw4ChDoAQhcMAY#v=onepage&q=halloran%20and%20organ%20donation&f=false

http://nationalpost.com/opinion/leah-hollins-canada-needs-an-integrated-national-organ-donation-system Note: This provides useful information on the politics and history of organ donation in Canada.

In 2008, CBS given the mandate by federal, provincial and territorial government to provide recommendations for a national strategy – a report Call to Action.

http://nationalpost.com/opinion/robyn-urback-why-did-the-liberals-shoot-down-a-bill-aimed-at-improving-canadas-system-of-organ-donation

https://www.motpatlantic.ca/Content/PastEvents/TxAtlantic2015/Why%20Donation%20Rates%20are%20Changing%20in%20Canada%20-%20Dr.%20Sam%20Shemie.pdf

https://www.canada.ca/content/dam/hc-sc/migration/hc-sc/dhp-mps/alt_formats/hpfb-dgpsa/pdf/pubs/transplantation-eng.pdf

https://beta.theglobeandmail.com/news/national/incremental-rise-in-organ-donations-still-below-target/article31789794/?ref=http://www.theglobeandmail.com&

http://onlinelibrary.wiley.com/doi/10.1111/j.1600-6143.2012.04057.x/full

Describes some of the agencies in USA: OPTN/UNOS and SRTR.

Presumed consent or “opt-out” has been proposed as a way to increase organ donation in Canada. A recent research review by The Canadian National Transplant Research Program (CNTRP), concluded that “evidence suggests an association between opt-out consent.

Presumed consent or “opt-out” has been proposed as a way to increase organ donation in Canada. A recent research review by The Canadian National Transplant Research Program (CNTRP), concluded that “evidence suggests an association between opt-out consent and deceased donation rates, [but] this does not mean that switching from opt-in to opt-out consent would necessarily lead to higher donation rates.”
https://docs.wixstatic.com/ugd/5a805e_8737824728964b3b84e83381379cb740.pdf

A recent poll did indicate that Canadians are up to 60%ish supportive of the idea of a presumed consent system.

Summary:

  • Presumed consent refers to a system that “permits the procurement of organs without explicit permission”(Wright, 2007)
  • This term is also referred to as “opt-out”
  • Studies have shown that opt-out have higher donation rates
  • However, some studies have also shown that opt-in countries have higher rates of living donation and opt-out have higher rates of deceased organ donation
  • Spain attributes their success not to a presumed consent system but to their Spanish Model of Organ Donation

See also:
http://tvo.org/video/programs/the-agenda-with-steve-paikin/10-questions-on-organ-donation

Donor registries are electronic databases that record an individual’s decision to become a deceased organ donor at the time of death.

In May 2016, Bill C-223 https://openparliament.ca/bills/42-1/C-223/ called for establishing a Canadian organ donor registry to centrally compile information on organ donors and potential transplantation recipients across the provinces and territories.

The Bill was rejected on June 15, 2016, but raised questions, once again, about what can be done to increase transplant rates in Canada.

Donor registries are electronic databases that record an individual’s decision to become a deceased organ donor at the time of death.(1) Donor registries are accessed at the time of death by authorized personnel for the purposes of communicating the deceased individual’s wishes regarding organ donation to family members. Most provinces and territories operate a donor registry.(2) In a study conducted in 2012, the province with the highest proportion of the population registered was Nova Scotia (65%), followed by New Brunswick (42%), Ontario (18%), Yukon (16%), Quebec (10%) and British Columbia (8%).(1) Since this study, the number of registrants have increased (e.g. Ontario currently has 30% registered(3) ) and the provinces of Alberta and Manitoba have also implemented a donor registry.(2)

The most common benefit of registering for organ and tissue donation is that families are made aware of and respect the deceased individual’s wishes at the time of death and increase the likelihood of families providing consent to proceed with donation.(4) Other methods of making your wishes known are signing a donor card, drivers’ license or discussing with your family members. However, this information may not always be readily available at the time of death when this important decision needs to be made in a quick and intense moment of grief. The availability of a donor registry can facilitate the donation decision that transplant or healthcare professionals can provide to available family members of the deceased individual.

For example, in Ontario, families consent to donation approximately 90% of the time when the deceased was a registered organ donor compared to about 50% when they were not registered.(5) In the United States, Siminoff and Lawrence found that families of potential donors were seven times more likely to consent for organ donation when they were aware of their loved one’s preferences compared to when they were unaware.(6) Donor registries can also be used to raise public awareness of organ and tissue donation.(7,8) The American Society of Transplantation, Kidney Foundation of Canada, and the general public in many nations support registry use.(9,10)

References

  1. Rosenblum AM, Li AH-T, Roels L, Stewart B, Prakash V, Beitel J, et al. Worldwide variability in deceased organ donation registries. Transpl Int. 2012 Aug 1;25(8):801–11.
  2. Organ Donor Registries - The Kidney Foundation of Canada | La Fondation canadienne du rein [Internet]. [cited 2017 Aug 7]. Available from: https://kidney.ca/organ-donor-registries
  3. Trillium Gift of Life Network. Registration Stats - Be A Donor [Internet]. beadonor.ca. Available from: https://beadonor.ca/scoreboard
  4. Institute of Medicine (U.S.), Committee on Increasing Rates of Organ Donation, Childress JF, Liverman CT. Organ donation: opportunities for action [Internet]. Washington, D.C.: National Academies Press; 2006 [cited 2017 Aug 8]. Available from: http://public.eblib.com/choice/publicfullrecord.aspx?p=3378122
  5. Ontario, Office of the Auditor General. 2010 annual report. Toronto: Office of the Auditor General of Ontario; 2010.
  6. Siminoff LA, Lawrence RH. Knowing patients’ preferences about organ donation: does it make a difference? J Trauma. 2002 Oct;53(4):754–60.
  7. Sung RS, Galloway J, Tuttle-Newhall JE, Mone T, Laeng R, Freise CE, et al. Organ Donation and Utilization in the United States, 1997–2006. Am J Transplant. 2008;8(4p2):922–934.
  8. Bergstrom C, Svensson L, Wolfbrandt A, Lundell M, Swedish Transplant Coordinators. The Swedish transplant coordinators’ experience of the new transplantation act and the donor register 1 year after implementation. Transplant Proc. 1997 Dec;29(8):3232–3.
  9. AST Position on Donor Registries | American Society of Transplantation (AST) [Internet]. [cited 2012 Sep 27]. Available from: http://www.a-s-t.org/public-policy/ast-position-donor-registries
  10. Rosenblum AM, Li AH, Roels L, Stewart B, Prakash V, Beitel J, et al. Worldwide variability in deceased organ donation registries. Transpl Int [Internet]. 2012 Apr 16 [cited 2012 Apr 27]; Available from: http://onlinelibrary.wiley.com/doi/10.1111/j.1432-2277.2012.01472.x/abstract