Medical Records — Dossiers médicaux

Posted By Lauren Hanon & Prof. Shauna Van Praagh

In the McGill Journal of Law and Health’s pilot episode of Medical Records, Journal Executive Lauren Hanon interviews Professor Shauna Van Praagh on the legal and social issues that arose surrounding the events of the tragic death of Éloise Dupuis in October of last year. In this episode, Professor Van Praagh discusses informed consent, the right to refuse treatment, religious freedom, and how we, as a society, engage with these issues when there are conflicts between what is right in law, and what feels right morally.

Youth Secure Care: The Politics of Forced Treatment

Posted By Lauren Hanon

It is common to hear parents say they would do anything for their kids. When it comes to a child’s life, ‘doing anything’ tends to be literal. It is this feeling of desperation felt by parents and guardians of children that motivates provincial legislation to enact youth secure care. When a child suffers from serious drug and alcohol abuse, parents or guardians know that the risks involved with such behavior are life threatening. In these circumstances, parents or guardians can seek a court order to have their child apprehended and forced into secure care for detox and treatment over a period of time approved by the court. Youth secure care is a provincial initiative, however. Not all provinces have the legislation that permits these programs.

In Alberta, there is the Protection of Children Abusing Drugs Act, the Protection of Sexually Exploited Children Act, and the Child, Youth and Family Enhancement Act; Saskatchewan has the Youth Drug Detoxification and Stabilization Act; Manitoba has the Youth Drug Stabilization (Support for Parents) Act; Ontario has the Child and Family Services Act; Quebec has the Youth Protection Act; New Brunswick has the Family Services Act; and Nova Scotia has secure care provisions within the Children and Family Services Act. In all of these Acts, there are varying areas of entry for youth. For example, while legislation may allow the parents to seek a court order to have their child apprehended according to one Act, in another province, a child who is already accessing other social services may find a different way into secure care. More specifically, a parent may obtain a court order in Alberta for their child whereas in British Columbia, a child may only find their way into secure care through the criminal justice system. The territories, British Columbia, Newfoundland and Labrador, and Prince Edward Island do not have any legislative provisions allowing youth to be taken into secure care for detox and treatment against their will. British Columbia had a Secure Care Act that never came into effect for political reasons in 2001. However, the province now seems ready to take another look into the issue.

Many factors contribute to the presence or absence of youth secure care legislation in a province or territory. Notably, it appears politics plays a large role, as is evidenced in British Columbia. I had the opportunity to talk to Dr. Grant Charles, a professor at the University of British Columbia in the School of Social Work, about this issue. In the paragraphs that follow, the information that I present is largely derived from my conversation with Dr. Charles. I have done my best to reproduce and paraphrase what Dr. Charles has shared with me.

Youth secure care is a sensitive issue politically because it involves individual people’s liberties. Secure care and forced treatment for an adult violates their civil liberties, which are protected by the Canadian Charter of Rights and Freedoms. If legislation violates a person’s Charter rights, the violation must be “subject only to such reasonable limits prescribed by law as can be demonstrably justified in a free and democratic society,” according to section 1 of the Charter. In other words, there has to be a really good reason for a Charter violation to be justified. In the case of youth secure care, we are talking about minors. We have many legal restrictions on what minors can and cannot decide for themselves, but when it comes to parents or guardians deciding whether their child needs to be forced into treatment programs, it seems a little less comfortable to assert that a youth does not have any right or a say in the matter.

Depending on whom you talk to, the goals may differ for the various programs. What a government looks for in implementing secure care legislation is effective drug treatments for minors that work to rebuild families and ensure that the youth patient overcomes his or her drug abuse. For parents, the most they might hope for is for their child to stay alive. What health care professionals and social service workers that run the programs hope for could differ as well. Therefore, asking “do these kinds of programs work?” is a difficult and complex question and the answer will vary depending on what ‘working’ means. For these reasons, it can be difficult politically to talk about the issue of youth secure care seeing as there is so much emphasis put on individual rights and where there are so many stakeholders.

Another factor that complicates the enactment of such legislation is the lack of studies on existing youth secure care programs. Indeed, what would such a study even look like? Which factors would be assessed, what standards would be used to determine if the legislation is working as intended? Given that most youth secure care programs are short term, ranging from a 10-day immediate detox to extended stays, all varying between provinces, the outcomes from patients can only be measured in the short term. Long-term outcomes would be much more difficult to assess as it would involve extensive monitoring. Many programs currently in existence will have their own internal monitoring, methods of assessment, records and statistics, but this information is not publicly available. For evidence-based policy decisions in provinces that do not have youth secure care, the lack of studies and statistics from other provinces’ programs is discouraging.

According to Dr. Charles, we need to understand and appreciate the issues surrounding youth drug and alcohol abuse (and other dangerous and risky behavior) as family and community issues. Re-centering the focus from an individual’s rights perspective to one that puts more value on family and community rights will result in a more accurate grasp of the reality of these kinds of programs. The problems and challenges that a child engaged in extremely dangerous behavior faces are not in a vacuum. Everyone in that child’s life is affected. Dr. Charles suggests that the real outcome of youth secure care is that it gives the child and the parents or guardians a “break”. The short period of the program allows the parents to have some time to rest knowing that their child is safe. This breather ‘reboots’ the natural strengths and support systems that were previously exhausted and presumably at a point of ineffectiveness. The child becomes stabilized and the family has another chance to move forward.

In the provinces where youth secure care legislation does not exist, mental health institutionalization and the youth criminal justice system tends to fill in the gaps where other social and health services fail, according to Dr. Charles. However, youth who go through these systems tend not to receive the care and support that they need to move forward positively in their lives. Youth secure care programs are a necessary part of family and community values that are missing from other governmental means to address challenges that are faced by youth engaging in dangerous and risky behavior. A report released last year by the Representative for Children and Youth in British Columbia titled Paige’s Story documents the heartbreaking life of a teenage girl named Paige and her death at the age of 19. The report claims that her death was the result of the “institutional indifference,” where the governmental agencies and foster families and the youth criminal justice system failed Paige at every step of her life. One of the recommendations of the Report is for the Ministry of Children and Family Development to “explore the creation of a form of secure care” that would allow for the apprehension of vulnerable children to remove them from situations that are unacceptably dangerous.

It is of the utmost importance that provinces and territories that do not currently have secure care legislation move towards enacting it as soon as possible. It is not a perfect solution to the harms of youth drug and alcohol abuse, but secure care would go a long way in mitigating many of the tragic and avoidable circumstances that happened to Paige. According to Dr. Charles, the vast majority of youth that he saw going through secure care programs were extremely grateful for such interventions and were glad that they had the opportunities for treatment and regenerating family and community ties. Secure care is needed to move towards better care for youth in the hopes of making sure that “institutional indifference” will not fail another child like it did for Paige.

Aboriginal Self-Determination and Institutional Healthcare: Building Trust and Collaboration

Posted By Lauren Hanon

On November 14th, 2014, Justice Gethin Edward delivered a significant judgement concerning constitutionally protected aboriginal rights and family services in Ontario: Hamilton Health Science Corps. v. D.H. In a case concerning the health and wellness of an 11-year-old Haudenosaunee girl, J.J., from the Six Nations Band, Justice Edward recognized the existence of aboriginal and treaty rights in Canada by upholding section 35 of the Constitution Act, 1982,. The girl, J.J., suffered from acute lymphoblastic leukemia (A.L.L.), and was undergoing chemotherapy treatment at McMaster Children’s Hospital for a short time in the month of August, 2014, before her mother withrew her from treatment. J.J.’s mother, D.H., believed that traditional medicinal practices were more suitable treatments for her daughter than chemotherapy. Hamilton Health Sciences disagreed, and filed a claim against J.J.’s parents on the grounds of child protection under the Child and Familly Services Act. They believed that J.J. had a 90-95% chance of being cured with chemotherapy, and that terminating this procedure would put J.J’s life at risk. At court, D.H. and J.J. won the right to forego chemotherapy and practice traditional aboriginal medicine instead.

This case follows that of Makayla Sault, an 11-year-old Ojibwe girl and member of New Credit First Nation in Ontario. Makayla, like J.J., had A.L.L. She decided to stop her chemotherapy treatment in favour of traditional medicine. She passed away in January of 2015.

These two cases are strikingly similar. Many people have attempted to characterize the complexities here as issues between life and death, or, even more crudely, between aboriginal rights and death, which is a terribly simple, paternalistic and colonial way of framing the difficult situation that these girls and their closed ones have to face. Shauna Van Praagh, a law professor at McGill University, suggests that what is needed moving forward is “trust and collaboration.” Van Praagh reframes the question as one of who has rights over the child. The parents of Makayla and J.J., it must be remembered, only wanted the best for their children, and cared and loved them deeply. We cannot assume that the parents were motivated by anything but love and concern for their children. With this in mind, we can see how looking at this problem as a “tug of war over institutional governance of youth well-being” does not acknowledge how we could get to a state of such distrust and disrespect between the parties involved. A question that seems important to explore here is whether the case of J.J. ought to have been a legal question in the first place. Had there been trust and collaboration in the first place, D.H. and the hospital and other actors could have worked together in the best interest of J.J. from the beginning.

Further, according to Lisa Richardson, the Director of the CDC’s Division of Cancer Prevention and Control, and Matthew Stanbrook, a health policy professor at the University of Toronto, the key to building trust is in respect. Imagine what would have happened to J.J. had the court ordered her to be apprehended and forced to undergo chemotherapy, which involves harsh chemicals and the risk of extremely adverse side effects. The common understanding in medical sciences that chemotherapy is the only effective treatment for patients like J.J. contributes to the immense distrust in government institutions that many aboriginal people have, especially in light of the residential schools legacy. Instead of engaging with J.J. and her family as to why they decided to stop the chemotherapy, the hospital determined that the best course of action was to force her into treatment without collaborating with the family in an attempt to agree on a treatment plan that was satisfactory for all parties.

Richardson and Stanbrook highlight key components of traditional aboriginal medicine: “plant-based medicines, culture and ceremony, multiple dimensions of health (physical, emotional, mental, and spiritual), and relationship between healer, patient, community, and environment.” If these values meet your expectations of healthcare, and given the fact that they are not inherently opposed to conventional medical treatment, then respecting and providing for these expectations is just good patient-centered care. When these expectations are dismissed and disrespected, it is easy to see how a person, and even entire communities, could come to distrust a hospital and conventional medicine. A major issue that needs to be solved is how to built trust and collaboration in these circumstances moving forward.

J.J. went into remission from leukemia. However, seven months after J.J.’s initial diagnosis and withdrawal from chemotherapy, the cancer returned. Justice Edward reviewed his initial, ground-breaking judgement at the request of the parties’ lawyers in order to clarify that the child’s best interests must be paramount in all decisions. The judge spoke to J.J., her parents, the lawyers, and healthcare officials separately and modified his original ruling. J.J. and her family had decided that she should return to chemotherapy, in conjunction with traditional medicinal treatments. The hospital treament and the traditional treatments are working together in order to serve J.J., her family, and her community, in the best way possible. This collaboration is a step forward towards building trust between Aboriginal communities and the medical community, and hopefully, we can continue on this path in order to have better and more respectful healthcare for everyone.

The Health and Safety of Sex Workers Motivates the SCC to Strike Down Sex Work Related Criminal Code Provisions in Canada (Attorney General) v Bedford

Posted By Lauren Hanon

Exchanging sex for money in Canada is not illegal. This is the very first statement made by Chief Justice McLachlin in Canada (Attorney General) v Bedford. What makes sex work effectively criminalized are the provisions in the Criminal Code, which render the activities surrounding sex work illegal. These provisions were constitutionally challenged in Bedford.

In 2013, the SCC struck down three sections in the Criminal Code as being unconstitutional. These provisions were said to have violated the rights of sex workers under section 7 of the Canadian Charter of Rights and Freedoms, which protects “the right to life, liberty and security of the person”. The sections of the Criminal Code that were struck down were s. 210 (keeping, or begin found in a bawdy house), s. 212(1)(j) (living on the avails of prostitution), and s. 213(1)(c) (communicating in public for the purpose of prostitution). The Chief Justice asserted that while the government has the right to regulate prostitution, a completely legal activity, the aforementioned provisions create extremely dangerous conditions for sex workers by limiting their ability to reduce risk and take precautionary measures to better protect themselves (para 60). Continue reading “The Health and Safety of Sex Workers Motivates the SCC to Strike Down Sex Work Related Criminal Code Provisions in Canada (Attorney General) v Bedford”

Blood Donor Regulations and Men who have Sex with Men: Is this Kind of Discrimination Necessary?

Posted By Lauren Hanon

As anyone who has donated blood knows, Canadian Blood Services (CBS) and Héma-Québec ask a lot of questions to help determine a potential donor’s eligibility for blood donations. People can be exposed to all kinds of risks related to blood safety, and these questions are supposed to weed out risk factors as much as possible.

Question # 18 asks male donors “Have you had sex with a man, even one time, since 1977?” According to the Canadian Hemophilia Society, “question #18 was introduced by the Canadian Red Cross in the 1980s to protect the recipients of blood and blood products against infection with HIV.” Until 2013, if you responded yes to this question, you were indefinitely banned from donating blood in Canada. In 2013, CBS and Héma-Québec reduced that ban to 5 years. As a result, all men who have sex with men are currently banned from donating blood for a period of 5 years following their last sexual contact with another man. This policy warrants further discussion because it involves important social questions coming head-to-head with concerns of blood supply safety.

Justifications for the discrimination

The concern for safety and trust in the blood supply is the most important guiding principle for donor regulation policy. There is a lot at stake for recipients of blood donations. The Canadian Hemophilia Society has been particularly vocal about the importance of safety given that the populations with which they are concerned are regular blood donation recipients. In the early 1980s, before the cause of AIDS was identified, the Canadian Red Cross Society (the predecessor of CBS and Héma-Québec) banned blood donations from MSM, because statistical data showed that MSM were a much higher-risk group for being affected by HIV/AIDS. During this time, many transfused patients became infected, “with the hemophilia population being particularly devastated by the HIV epidemic.”

Inevitably, all screening of potential blood donors is discriminatory in one way or another, and this discrimination is justified because of safety concerns for blood supplies. But the real question here is whether the current blanket discrimination against men who have sex with men (MSM) can actually be justified in this way.

Charter challenges

As medical science and technology have progressed and improved in the last 30 years, and as blood supplies in Canada have been critically low, donor regulation policies have seen quite a bit of change. LGBTTQ groups have expressed strong views in favor of removing the 5-year deferral period (or significantly reducing it further) because the deferral period unfairly lumps people who practice safe sex and who know the sexual history of their partners with people who practice the high-risk sexual behavior that Question # 18 supposedly aims to filter out.

This argument was advanced in Canadian Blood Services v Freeman (2010). Freeman had donated blood to Canadian Blood Services (CBS) on multiple occasions from 1990 to 2002, and each time he misrepresented his sexual history on the screening questionnaire, claiming that he had not had sex with another man since 1977, when in fact he had. CBS sued for negligent misrepresentation. Freeman countersued, arguing that the screening question was discriminatory on the basis of sexual orientation, and that it therefore infringed on his s. 15 Charter rights. The court ultimately awarded damages to CBS and dismissed Freeman’s counterclaim. The court’s reasoning was that CBS is not a governmental entity, not under government control, and therefore not subject to the Charter. Further, even if CBS were a governmental entity, donating blood is not a right protected under the Charter, and Freeman could not demonstrate a benefit or a burden that is provided or imposed by the law.

Disproportionate concern surrounding MSM and risk to the blood supply?

In 2012, CBS held a series of consultations framed by the CBS Report on Donor Selection Criteria Relating to Men Who Have Sex With Men. The consultations included speakers from various fields, including public health, ethics, and social justice advocacy groups. Stakeholder groups were also involved in discussions about how policy changes in blood donation regulation could take into account the larger societal picture of impacts on blood donation recipients and blood donors.

A central concern that came out of the Report and the consultations was the issue of emerging pathogens. An emerging pathogen is “an infectious agent whose incidence has increased or threatens to increase in the near future…they may also be new, previously unknown agents.” Identifying emerging pathogens in blood donations differs from identifying the presence of HIV, HCV, or HBV infections, because there is an established time period between infection and detection of a pathogen (a known “window period”) to allow for effective testing of the three infections, whereas there is too much that is unknown when it comes to emerging pathogens and risk-analysis. A blood test can only test for something specific. If there is an unknown pathogen present in a blood sample, it cannot be tested for and thus would go undetected into the blood supply.

The CBS Report claims that only the sexually transmitted emergent pathogens would “have a higher incidence in the MSM population.” This report distinguishes between safe sex practices and higher-risk practices. Further, 68 agents of emergent pathogens were identified in CBS’s 2009 Report, each being assigned a risk priority level. The 2012 Report highlights 16 of these agents, and claims that MSM is only a risk factor for one agent, in the second lowest priority level category indicating concern. Moreover, the Report claims that very few of these agents are sexually transmitted. This would suggest that there is a disproportionate amount of concern surrounding MSM with regards to risk factors, especially when the safety of sexual behaviour is taken into account. These findings do not seem to be reflected in the current way that potential blood donors are being screened.

Question #18’s goal is to screen out people who engage in high-risk behaviour, and the epidemiological research that supposedly supports this goal are findings like the Public Health Agency of Canada’s Estimates of HIV Prevalence and Incidence in Canada, 2011, which found that MSM make up 46.7% of all individuals infected with HIV. However, whereas the high-risk behaviour that this question aims to screen out is related more to the safety of sex practices for sexually transmitted infections, rather than a person’s sexuality, the question unjustly targets a person’s sexuality, and not the safety of their sex practices.

Conclusion: policy considerations

Currently, the Canadian blood inventory is at its lowest since 2008. In the United States, a 2014 study conducted by the Williams Institute claimed that “[i]f MSM who have not had sexual contact with another man in the past twelve months were permitted to donate […] 185,808 additional men are likely to donate 317,000 additional pints of blood each year.” Such a policy modification would likely have similar outcomes in Canada. Our blood supply is critically low and there are a large number of potential blood donors that are not permitted to donate. The safety of the blood supply is of utmost importance, but a person’s sexuality in and of itself does not pose any danger. In order for any changes to blood donation operations to occur, CBS and Héma-Québec must submit a proposal of changes to Health Canada because they are under the direction of the regulation and policies of Health Canada and therefore may not modify or change the donor screening process. Given the current state of blood supply and donor regulations, this topic warrants much more discussion and evidence-based policies that keep in mind all of the stakeholders and communities.