Why opt-out organ donation isn’t as simple as it sounds

News

1. Empathy

“Halifax hired a consultant to train its employees on ’empathy-based approaches to homeless encampments’ before announcing it would evict homeless people from their encampments,” reports Zane Woodford:

On Thursday, the Examiner learned that Halifax hired a consulting firm to train its employees on the encampments.

“The municipality hired the consulting firm, OrgCode, which specializes in empathy-based approaches to homeless encampments, to provide some training sessions for municipal staff and social service providers,” spokesperson Erin DiCarlo confirmed in an email.

DiCarlo said the consultant cost the municipality “approximately $7,000,” and didn’t provide any communications advice.

…

According to its website, Ontario-based OrgCode Consulting, Inc. “works with non-profits, government, private companies and non-governmental organizations.”

“We are catalysts for better outcomes. Hip and nerdy, we are the antidotes to the status quo across the multi-disciplinary skill set of the team. OrgCode excels in strategy, planning, training, research, community engagement, and positive social change,” reads its bio.

Click here to read “Halifax hired consultant specializing ‘in empathy-based approaches to homeless encampments’ for $7,000.”

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2. Money map

The money storm continues, as the Rankin government has showered $142,869,000 about the province since June 6. You can zoom in on the map above and click on the money bags to get details of each expenditure.

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3. COVID-19

There were two new cases announced yesterday.

Wednesday, 26,831 doses of vaccine were administered, a single-day record.

As of end of day Wednesday, 1,062,418 doses of vaccine had been administered; of those, 348,034 were second doses. So far, 73.5% of the entire population has received at least one dose of vaccine.

The vaccination clinic at the Halifax Convention Centre is now providing walk-in, no appointment second dose vaccinations for people aged 35 and over; the walk-in clinic continues to provide first doses for all ages without appointments. That vaccination clinic uses the Moderna vaccine. Hours are noon-8pm, every day except Sunday. A health card is not needed to be vaccinated at this clinic.

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4. Will Canada face criminal charges for residential school abuses?

“The recent discoveries of unmarked graves have spurred Indigenous groups and lawyers to demand that police lay criminal charges against the Canadian government, churches and individual perpetrators of crimes committed in the institutions,” reports Hilary Beaumont for Aljazeera:

The Native Women’s Association of Canada (NWAC) is behind a push for criminal charges, while [criminal defence lawyer Andrew] Phypers is working with a group of lawyers to encourage the International Criminal Court (ICC) to open an investigation into the institutions. But experts say their efforts could be stalled or thwarted by the Canadian government.

“Part of our ambition is to see accountability,” Phypers said.

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5. Shelburne dump

Professors Ingrid Waldron and Juliet Daniel are teaming up to investigate the Shelburne Dump, which was opened in the 1940s:

Residential, industrial and medical waste from throughout eastern Shelburne County was burned at the dump over the decades, leaving nearby residents concerned about health issues.

The dump was situated uphill from the African Nova Scotian South End community, whose roots date back to the settlement of Black Loyalists who were evacuated from the United States after the Revolutionary War of 1776. Those near the dump worked, played and lived amid constant smells and smoke from burning garbage. The dump operated for 75 years, closing in 2016.

The placement of this dump was an act of what we now refer to as environmental racism — the disproportionate siting of polluting industries and other environmentally hazardous projects in Indigenous, Black and other marginalized communities.

Questions about the high rates of cancer — and deaths — among members of Shelburne’s African Nova Scotian community, compared to their white neighbours on the other side of town or even within the South End, have long simmered. We, along with our colleagues, are embarking on a major research project to determine whether the legacy of the dump may be even more sinister than people knew at the time.

…

Our team will probe the contents of the dump to identify harmful materials such as heavy metals, volatile organic compounds and fine particulate matter, and we will examine genetic and epigenetic changes to the genomes of Shelburne residents that may explain cancer susceptibility.

We will also examine the extent to which race, gender, income and other social determinants of health contribute to cancer and premature death. The role of diet, exercise, smoking and other lifestyle factors in cancer incidence in Shelburne will also be studied given that existing studies indicate that these factors can increase our likelihood of getting cancer.

The study is multidisciplinary and complex. Yet we are confident it will help clarify the complex interactions between the social determinants of health, lifestyle factors, genetics and generational impact of chronic toxin exposure. It will also shed light on what is driving high cancer rates in South End Shelburne.

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6. Organ donation

People die needlessly because there are not enough organs available for transplant, so there was wide support for the McNeil’s government “opt-out” legislation, passed in 2019 and implemented earlier this year. As Yvette d’Entremont reported:

In April of 2019, the province passed legislation to increase organ and tissue donation in Nova Scotia. Under the new Human Organ and Tissue Donation Act, Nova Scotians will have to opt out of being a donor rather than opt in.

Anyone who doesn’t expressly opt out will be a presumed potential donor. In an April 12, 2019 media release, the province noted the legislation is the first of its kind in North America.

d’Entremont interviewed bioethicist Françoise Baylis, a critic of the legislation:

“Have you seen any other province rushing to do this? ‘Oh, look at what Nova Scotia has done? They’re ahead of the curve. Let’s catch up with them.’ No. Not a single province has moved in this direction,” Baylis said.

“I think that one of the reasons is they might in fact anticipate huge pushback against that kind of initiative, and I think that pushback would only be greater now given all of the other concerns people have about health care.”

Still, it is my sense that the overwhelming majority of the public supported the law, and still supports it. After all, it makes intuitive sense; the thinking goes: there aren’t enough organs, there really aren’t good reasons to oppose donating organs, and even if there are, people who object can opt out, so what’s the big deal?

But in a short article in the CMAJ (Canadian Medical Association Journal), Matthew J. Weiss and Jade Dirk call those assumptions into question.

Weiss is an expert in organ donation (especially for children), and a medical director for Transplant Québec, a nonprofit provincial organ donation organization. Dirk is a project manager with Nova Scotia Health, charged with improving rates of organ donation and evaluating the impact of the opt-out legislation.

In their paper, the authors refer to opt-out as “deemed consent.”

The first problem with deemed consent they outline is that it isn’t so clear that it actually increases the rate of organ donations:

Internationally, deemed consent models have had mixed effects. A 2019 systematic review concluded that countries with deemed consent had donation rates 20%–75% higher than countries using other consent models. However, only 1 of 6 studies included in the review showed that the consent model was the primary factor influencing donation rates. Instead, national health care expenditures and number of potential donors (closely related to vehicular safety and incidence of strokes) were more closely correlated with donation rates. In contrast, a 2019 analysis of databases from 35 countries did not show a statistically significant donation or transplant advantage to deemed consent.

I would rather crudely interpret that as follows: If you don’t have enough people dying in car crashes, the opt-out law won’t suddenly get you more, and even if you do manage to get a bunch more donated organs, it doesn’t do you any good if you don’t have the expertise, means, and facilities to get those organs into people who can use them.

But what I found additionally interesting about Weiss and Dirk’s paper was the point about public trust:

Organ donation relies on public trust, which must be earned from grieving families at the bedside of a dying or recently deceased loved one. These families must be confident that all appropriate measures to save the life of their loved one were pursued and that organs will be allocated in a just and equitable manner. If a medical system does not have that foundational trust, deemed consent could be seen as an overreach by a system more interested in transplanting organs than treating severely injured patients. An oft-cited example is that of Brazil in the late 1990s; not even a year after attempted implementation, a deemed consent law was revoked because of widespread distrust of the system and a decrease in donation activity across the country.

Let’s think about how racialized communities understand their experiences with health care.

On the extreme end of the spectrum, the use of racialized and marginalized peoples in unethical medical research, without their consent, is well-documented. Most people know about the Tuskegee Study, which followed 600 Black people stricken with syphilis for nearly 40 years, without treating them. But it goes far beyond that; as Harriet Washington documents in her book “Medical Apartheid,” doctors have been experimenting on Black people for 400 years. One case is described as follows:

As recently as the 1990s, unethical medical research involving African Americans has been conducted by highly esteemed academic institutions. For example, researchers at a prestigious U.S. university recruited African American boys into a study that hypothesized a genetic etiology of aggressive behavior. Through the use of monetary incentives, they were able to convince parents to enroll their sons in a study that included withdrawal from all medications (including asthma medications), ingesting a mono-amine (low protein) diet, an overnight stay (without parents), withholding of water, hourly blood draws, and the administration of fenfluramine, a drug known to increase serotonin levels and suspected to be associated with aggressive behaviors. In addition to these methods, several other significant human subject violations were cited, including restricting the recruitment to Black children. It is fair to ask whether mistreatment of African Americans that has occurred more recently than the Tuskegee syphilis study is exacerbating mistrust today.

But beyond outright medical experimentation, racism is embedded in all our institutions, including in health care. Evelyn White, who had endometriosis, described her own experiences with the medical establishment for the Examiner.

Consider the family of, say, a young Black man involved in a car crash who lands in the emergency room with life-threatening injuries. Given the family’s knowledge of the history, and their experience with receiving health care in ways they understand as racist, can they trust that their loved one will be accorded the best care? Or might they think that in the balance, someone else’s life being saved with their loved one’s organs will be more valued?

Weiss and Dirk go on to explain how they will study the implementation of Nova Scotia’s opt-out law, by auditing organ donation rates and assessing attitudes among the public and health care workers, and:

Special care is being taken to reach out to historically underrepresented groups that may have particular reasons to distrust the concept of presuming consent for donation. No one knows exactly what the impact of the deemed consent policy is going to be in Nova Scotia, but, by studying it carefully, future debates around Canadian consent models will be based less on presumptions and more on data.

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7. Harvest plans

We’ve taken Joan Baxter’s June 10 article, “Public engagement, future of the forestry, and the Harvest Plans Map Viewer,” out from behind the paywall.

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1. Transparency report

People give the Halifax Examiner money. The Examiner is also now a beneficiary of the federal government’s digital journalism tax rebate. We therefore believe we have an obligation to tell you how we are spending your money. The information here comes from the Examiner’s 2020 tax return, which was filed at the end of June. Here’s the Income Statement from the return:

Revenue of $259,985 was mostly from subscriptions, augmented by sales of swag. We ended the year $821 in the red. Last year was an exceptional growth year, and we’ve continued growing, so I expect revenues for 2021 will be in the ballpark of a half-million dollars.

Salaries and wages were $104,800, while freelance costs (“sub-contracts” on the form) were $115,517.

The next largest expense, professional fees at $21,582, reflects money paid mostly to our lawyer (mostly for the mass murder investigation), but also to the accountant and the company that provides tech support.

The $2,957 in “meals and entertainment” reflect our staff party (the previous year’s figure included the subscriber party, which was not held in 2020) and meals and drinks I incurred while reporting — for example, when I travelled to Florida in January 2020 to report on the Glen Assoun story, I expensed my meals to the Examiner.

My personal income from the Examiner last year was about $29,000. I had other sources of income — notably, my pay from the CBC for the Dead Wrong podcast and from other freelance work as well — and I received a small inheritance. Towards the end of the year, I was placed on the company payroll, and now my pay is based solely on the number of subscribers and not on any other revenue sources. I am the lowest paid full-time employee (part-timers and freelancers make less). By the end of this year, I expect my annual salary from the Examiner will be around $45,000, although I have other income from freelance projects.

The digital journalism tax rebate for 2020 is $13,564, reflecting the Examiner’s eligibility start date of May 4. There was an overpayment of taxes the previous year, so we’re getting a cheque for $16,364 — I’m told it’s in the mail — and it will be applied entirely to employee pay (but not mine). This year’s subsidy, which will be received next year, will be substantially higher, reflecting both a full year of eligibility and more employees; I can guess that will be in the ballpark of $50,000.

We value your support, and I want you to know that we aim to spend your money as judiciously as possible. I hope, even, that people who are not now subscribers will see that we are a shoestring operation that punches way above our weight, and so will want to subscribe to support our work.

I challenge all other media organizations to be as transparent.

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Government

No public meetings.

On campus

No events, there’s a pandemic.

In the harbour

Halifax
06:30: ZIM Constanza, container ship, arrives at Pier 42 from Valencia, Spain
08:00: MSC Veronique, container ship, sails from Pier 36 for sea
10:00: One Houston, container ship, arrives at Fairview Cove from Norfolk
16:00: Nolhanava, ro-ro cargo, sails from Fairview Cove for Saint-Pierre
16:30: ZIM Constanza sails for New York

Cape Breton
No arrivals or departures.

Footnotes

I don’t have any numbered observations.

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