Jimmy Stewart

Ethical Issues surrounding Organ Donation Policies

An analysis of the Opt-In versus Out-Out legislation

 

(Photo Credit: Donate Life Colorado)

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INTRODUCTION TO ORGAN DONATION IN CANADA

Organ donation in Canada has one of the lowest rates among industrialized nations. In 2012, only 17% of eligible patients (consenting, under 70) who died in hospital became organ donors. Only 1 in 6 — or 520 out of 3,088 patients successfully donated an organ. In the same year, the number of live donors surpassed the number of deceased donors nationally; this demonstrates that Canada is not reaching its full potential with organ donations (CIHI, 2014). 

The current donation system is based upon an archaic methodology when living donors provided the only viable source of organs. A system that relies upon altruism and express consent limits the potential of saving lives with the technology of modern-day transplant teams. A recent report from the Canadian Institute for Health Information has shown a generational shift towards increasing deceased organ donor rates. In 2019, there were 21.8 donors per million population, an overall increase of 59% since 2010. The living donor rate was reported at 16.3 per million — approximately the same as in 2010 (CIHI, 2020).

A poll conducted by Canadian Blood Services showed that over 90% of Canadians say they support organ donation, yet only 32% have registered their decision (C.B.S., 2019). To determine why the registration rate is so low compared to the support rate, we will discuss current registration methods, proposed registration methods, and the moral, ethical, and legal concerns regarding them.

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FEATURED LAW & POLICY

1. BILL 61 – An Act to amend the Trillium Gift of Life Network Act. 2006

2. BILL 91 – Peter Kormos Memorial Act. 2019

3. TRILLIUM GIFT OF LIFE NETWORK ACT, R.S.O. 1990, C. H.20

4. HEALTH CARE CONSENT ACT, 1996, S.O. 1996, C. 2, SCHED. A

 

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THE CURRENT POLICY

Currently, the Trillium Gift of Life Network Act requires that informed consent be obtained before tissue can be removed from a human body. If we recall from the Health Care Consent Act, there are four elements of consent. (1) The consent must be related to the treatment, (2) the consent must be informed, (3) the consent must be given voluntarily, and (4) the consent must not be obtained through misrepresentation or fraud. 

Capacity must also be established regarding a person’s ability to provide consent. For routine treatment with a healthy individual, capacity is readily determined, and consent is easily obtained. Those who lack capacity and have not “expressed their wishes” or have an advance directive in place delegate their care to the hierarchy of substitute decision-makers. Organ and tissue donor registration can be completed in a magnitude of ways, online through the Ontario.ca website portal or in person when you register your driver’s licence or health cards. Yet, only 33% of those who support organ donation have registered. (C.B.S., 2014). 

In Ontario, the Trillium Gift of Life Network Act sets the minimum age of organ donation at 16; this age varies across Canadian provinces with provincial ages of consent. For minors, despite the legislation, relevant case law must be considered as a “mature minor” status can be applied to younger individuals (New Brunswick Court of Appeal, 1994). Additional case law where minors were determined to be competent to refuse life saving treatment can be used to provide the same autonomy to the minor for consenting to organ donation (Hamilton Health Sciences Corp. v. D.H, 2014).

Legislation changes have been proposed to the Trillium Gift of Life Act to improve the rate of organ donations but have been surrounded by moral and ethical controversies. One of the recurring pieces of legislation is known as Bill 61. 

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BILL 61 – AN ACT TO AMEND THE TRILLIUM GIFT OF LIFE NETWORK

In 2006, Bill 61, titled “Trillium Gift of Life Network Amendment Act, 2006,”  was given its first reading by M.P.P. Peter Kormos in the Legislative Assembly of Ontario. The proposed legislation would repeal the definition of “consent” in the current act, remove clauses for the definition of “substitute,” and replace the entirety of Sections 4 & 5 (“Consent by person for the use of his or her body after death,” & “Consent by other persons”) of the Trillium Gift of Life Network Act. 

In essence, these changes would assume — by default — Ontario residents consent to being an organ donor unless a person actively “opts-out” of the registry. The Bill did not receive a second reading and was mainly overlooked after Peter Kormos’s death in 2013. 

In 2019, Ontario New Democratic Party Health Critic France Gelinas reintroduced the Bill as the “Peter Kormos Memorial Act (Trillium Gift of Life Network Amendment)” and is currently being tabled as Bill 91. The Bill is the same as the 2006 original version and promotes the same “Opt Out” versus “Opt In” approach to organ donation (Chan, 2019).

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OPT-OUT VERSUS OPT-IN: DOES IT WORK?

Data analysis was conducted on 35 Organisation for Economic Cooperation and Development (OCED) registered countries. Seventeen of them classified as opt-out, and eighteen of them classified as opt-in. The researchers controlled several social and economic variables for — population, GDP, road traffic accidents, religious affiliation, education rates, hospital beds, household debt, government debt, taxes, and health spending. A multivariate linear regression model demonstrated the total deceased donor rates to be 20.3 vs. 15.4 (CI 95%, P = 0.195), not statistically significant (Arshad et al., 2019).

A systematic review of Opt-out versus Opt-In consent on deceased organ donation and transplantation from 2006-2016 came to a different conclusion. Two thousand four hundred studies were screened for eligibility, and six were chosen to be analyzed from PubMed and EMBASE literature searches. This study corrected for similar confounding variables. Three of the studies reported Opt-Out consent increased by 38-83% over an 11-13 year period (Ahmad et al., 2016).  

(Source: Comparison of organ donation and transplantation rates between opt-out and opt-in systems. Arshad et al., 2019.)

If you do a literature search, you will discover multiple research papers on this topic with conflicting information. Presenting two study results with opposing conclusions should raise interest in conducting your own analysis of the issue at hand. Opt-Out organ donation is a topic that is being actively researched; as more countries adopt this method, more data will be available for analysis. So, at this point, the jury is still out on the verdict of which act provides the greatest beneficence. 

 

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ETHICAL CONCERNS

Current organ donation policies rely on explicit consent, where the individual has indicated their choice based upon the elements of consent and capacity. Explicit consent is the term used within an Opt-In system. Switching to an Opt-Out system requires the use of presumed consent; meaning that unless the person has explicitly wished NOT to be an organ donor, then consent will be assumed.

Presumed consent versus explicit consent is where the ethical concern begins. One of the elements of consent is being informed — can you say with certainty that a person is informed on organ donation because they did not Opt-Out? Supporters of the Opt-Out system counters that “an opt-out policy without presumptions is ethical.”, stating that failure to register an objection (given adequate chances to do so) can be interpreted as implied consent (Prabhu, 2019).

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CONCLUSION

Reminding ourselves that morals are our guiding principles and ethics are what we consider acceptable rules, actions, and behaviours. With this in mind, it is up to each individual to decide based upon the evidence presented and the literature available to make their stance on the Opt-Out organ donation policy and whether you would support legislation such as Bill 91. As of August 25th 2020, Research Co. found that 70 percent of Canadians were in favour of promoting an Opt-Out system versus 30 percent who were opposed (ResearchCo, 2020). With increasing organ donation rates and increasing support for the Opt-Out system the next decade may provide even better survival rates and organ transplant numbers than we have seen in the previous decade.

Regardless if you support the Opt-Out policy or not, if you support organ donation, please consider registering at beadonor.ca

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“Organ Donation Saves Lives”

References

1. Ahmad MU, Hanna A, Mohamed AZ, Schlindwein A, Pley C, Bahner I, Mhaskar R, Pettigrew GJ, Jarmi T. A Systematic Review of Opt-out Versus Opt-in Consent on Deceased Organ Donation and Transplantation (2006-2016). World J Surg. 2019 Dec;43(12):3161-3171. doi: 10.1007/s00268-019-05118-4. PMID: 31428836.

2. Arshad, A., Anderson, B., & Sharif, A. (2019). Comparison of organ donation and transplantation rates between opt-out and opt-in systems. Kidney International, 95(6), 1453–1460. https://doi.org/10.1016/j.kint.2019.01.036

3. New Brunswick. Court of Appeal (1994). Walker v. Region 2 Hospital Corp. Dominion law reports, 116, 477–498.

   C.B.S. (2019). Canadian Blood Services. Organs & Tissues: Help raise awareness year round. https://organtissuedonation.ca/en/about

4. Chan, P. (2019). Ontario may follow Nova Scotia’s lead in adopting ‘presumed consent’ for organ donation. https://toronto.ctvnews.ca/ontario-may-follow-nova-scotia-s-lead-in-adopting-presumed-consent-for-organ-donation-1.4512874

5. CIHI. (2014). Canadian Institute for Health Information. Deceased Organ Donor Potential in Canada. https://www.cihi.ca/sites/default/files/organdonorpotential_2014_en_0.pdf

6. CIHI. (2020). Canadian Institute for Health Information. Organ replacement in Canada: CORR annual statistics, 2020.
   https://www.cihi.ca/en/organ-replacement-in-canada-corr-annual-statistics-2020?emktg_lang=en&emktg_order=2&utm_campaign=media-embargo-corr-hcrs-embargo-november-2019&utm_content=corr-annual-statistics-en&utm_medium=email&utm_source=crm

7. Hamilton Health Sciences Corp. v. D.H., (2014). C287/14E. Ontario Court of Justice. https://canlii.ca/t/gf8sg

8. New Brunswick. Court of Appeal (1994). Walker v. Region 2 Hospital Corp. Dominion law reports, 116, 477–498. https://pubmed.ncbi.nlm.nih.gov/12041078/

9. Prabhu P. K. (2019). Is presumed consent an ethically acceptable way of obtaining organs for transplant?. Journal of the Intensive Care Society, 20(2), 92–97. https://doi.org/10.1177/1751143718777171

10. ResearchCo. (2020). Poll conducted by Research Co. on Organ Donation in Canada – August 25, 2020. https://researchco.ca/wp-content/uploads/2020/08/Tables_Donation_CAN_25Aug2020.pdf

First Nations Rights in Choosing Traditional Medicine

A Legal Analysis of The Honourable Justice Edwards ruling

 

Supporters of the Six Nations side of the case hold up signs outside of an Ontario court house. (Photo: CBC)

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BACKGROUND / CASE SUMMARY

JJ, an eleven-year-old native girl, was diagnosed with acute lymphoblastic leukemia (ALL) and given a 90-95% survival rate by her oncologist; the family was also told there were no known cases of survival without chemotherapy. JJ commenced her chemotherapy treatment for a few days before her mother, DH — her substitute decision-maker (SDB) — withdrew consent in favour of pursuing traditional aboriginal medicine to treat her daughter’s ALL. JJ. and her family are part of the Mohawk tribe of the Six Nations band in Ohsweken, Ontario, which traditionally uses alternative healing methods. 

Physicians at the Hamilton Health Sciences center (HHSC) disagreed with DH’s decision to remove JJ from treatment and filed a report to the Brant Family and Children’s Services (CAS); CAS determined no intervention would occur. The HHSC then raised an application under Subsection 37(2)e of the Child and Family Services Act in the Ontario Court of Justice to have JJ return to chemotherapy. 

Subsection 37(2)e – Child and Family Services Act

"The child requires medical treatment to cure, prevent or alleviate physical harm or suffering, and the child’s parent refuses to consent to treatment."

This week’s topic will analyze the ensuing legal decision delivered by Justice Edwards and the Ontario Court of Justice (OCJ).

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FEATURED LAW & POLICY

a) Canadian Charter of Rights and Freedoms

b) Constitution Act, 1982

c) Child and Family Services Act, RSO 1990, c. C-11

d) Health Care Consent Act, 1996

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Mohawk Medicine – A look inside a traditional indigenous medicine shop

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THE DECISION

The Honourable Justice G.B. Edwards found that JJ is not a child in need of protection when her SDM has chosen to exercise her constitutionally protected right to pursue their traditional medicine over the physician’s recommended course of chemotherapy.

The application was dismissed (OCJ, 2014).

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LEGAL ANALYSIS

This case depends upon the lens in which you choose to view it. JJ — an 11-year old girl — has a high chance of survival should she pursue and endure her chemotherapy treatment; the alternative is that there are no known survivors without it. It seems like there is only one option. However, recalling the additional fact that JJ and her family are part of the Mohawk Six Nations band of aboriginal peoples, believe strongly in traditional aboriginal medicine and have the right to seek alternative treatments.

This is the critical junction of this case.

The physicians seek an injunction to force JJ back to chemotherapy treatment under the CFSA, and the HCCA adjudicated before the Consent and Capacity Board. The physicians deemed JJ not capable of making an informed decision. They have concluded her mother DH’s (SDM) decision to remove her from chemotherapy has placed her at medical risk and seeks a child in need of protection status. The respondent’s counsel has refuted that JJ does not need protection but instead requires a diagnosis.

Enter Section 35 of the Constitution Act, 1982 — “Recognition of existing aboriginal and treaty rights .” As DH and her Mohawk Six Nations band practice traditional medicine as an integral element of their culture, this becomes a constitutionally protected right pursuant to the act listed above. The fact is, DH does not want to discontinue treatment for JJ; she wants to pursue an alternate treatment. Justice Edwards states that “such a right cannot be qualified as a right only if it is proven to work by employing the western medical paradigm” (OCJ, 2014). Justice Edwards’s statement reflects that we do have a choice in treatment plans and that it should not be constrained to typical western medicine.

How does “Recognition of existing aboriginal and treaty rights” expand into traditional medicine when not mentioned in the Consitution Act?

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The Chief Justice Writes:

“The time period that a court should consider in identifying whether the right claimed meets the standard of being integral to the aboriginal community claiming the right is the period prior to contact between aboriginal and European societies. Because it is the fact that distinctive aboriginal societies lived on the land prior to the arrival of Europeans that underlies the aboriginal rights protected by s. 35(1), it is to that pre-contact period that the courts must look in identifying aboriginal rights.”

(OCJ, 2014)

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Concluding our analysis in line with Justice Edwards’s decision, we can now, on the basis of law, understand why aboriginal people have the right to practice traditional medicine — even when western society says it may be harmful. Traditional medicine and culture have been ingrained within the Six Nations band, and as a constitutionally protected right, it is not up to us on which form of treatment they seek.

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“Reconciliation means not having to say sorry a second time”

References

1. CFSA. (1990). Child and Family Services Act. Ontario.Ca. https://www.ontario.ca/laws/view

2. Constitution Act. (1982). Schedule B to the Canada Act 1982 (UK), 1982, c 11 | The Constitution Act, 1982.
   https://www.canlii.org/en/ca/laws/stat/schedule-b-to-the-canada-act-1982-uk-1982-c-11/latest/schedule-b-to-the-canada-act-1982-uk-1982-c-11.html#sec35subsec1_smooth

3. Jarvis, D. (2015). CanLII Connects. Recent Case Update – What are the implications for health care providers?.
   http://canliiconnects.org

4. OCJ. (2014). Hamilton Health Sciences Corp. v. D.H., C287/14E (Ontario Court of Justice). https://canlii.ca/t/gf8sg

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