Estate Planning: Ten Practical Steps to Improve Written Advance Directives in Powers of Attorney for Healthcare

Posted By Dr. Laura Hawryluck

Introduction

Advance care planning was originally devised as a process to ensure that a person’s wishes and values are respected in some of the most important decisions of his or her life when that voice is silenced due to incapacity. Such wishes could be expressed, verbally or in writing, to those who would subsequently ensure that these wishes and values were factored into any decisions regarding healthcare and treatment choices. The importance of having one’s voice heard quickly translated into the creation of powers of attorney documents for personal or health care as a legal document with the aim to express one’s directives or appoint someone to make substitute decisions. These documents are now almost always generated at the same time as other, more traditional aspects of estate planning.

The underlying idea holds great promise despite the often flawed execution due to a range of common assumptions made by the parties to a power of attorney document. While people often wish to avoid life-sustaining treatments at the end of life, they rarely understand the realities of the life-sustaining treatments and resuscitation their directives most commonly speak to, the contextin which such treatments may be required or their implications for quality of life. Nor do they seek to deepen their knowledge by systematically consulting their physicians or healthcare teams prior to completing these legal documents, even if their lawyer encourages them to do so.

s_129841.jpg     (Source: Fairview)

Further, most people appointed as substitute decision-makers or falling under the statutorily defined hierarchy of substitute decision-makers have never discussed such personal wishes and values with those they are designated to represent. As a result, many end up substituting their own values for those of the now incapable person and often consent to or request treatments that are more aggressive than the person actually wanted to undergoespecially as the end of life nears. Adding to these issues, decisions with respect to life support and resuscitation often need to be made quickly, which only adds to the tension and stress experienced by SDMs and healthcare teams.

These problems, if unaddressed, are only going to cause increasing challenges in medical and legal practice: as people live longer; as families become smaller; as friendships fade or evolve; as more people choose to stay single and not have children, more people may find themselves alone and may, therefore, seek to express their wishes and values through written advance directives rather than solely appointing a substitute decision-maker. However, the text and content of advance directives are often ambiguous, do not speak to the situation, and are frequently overly standardized in legal practice in ways that prohibit the expression of unique personal wishes and instead promote conformity. While the actual wording and systematic inclusion of “no heroic” clauses in power of attorney documents has not been altered for years, such clauses as currently written are not particularly helpful in clinical practice. For advance directives to speak clearly, truly respect autonomy and provide meaningful guidance, the text of legal documents must improve—the time for them to do so is now.

This series therefore aims to set out an intensivist’s perspectives on the top ten ways estate lawyers can improve the content and scope of advance directives, the wording of any “standardized” no heroics clauses, the process to ensure these wishes and values are respected and, as a result, improve the advice they provide to their clients and the quality of end of care they ultimately receive.

Go to Step 1


The author wishes to encourage and engage in discussion regarding the directives she proposes here. Please take a moment to express your thoughts and critical commentary in the comments section below.

About the Author

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LAURA HAWRYLUCK received her MD in 1992 from the University of Western Ontario where she also served her Internal Medicine residency. She completed a Fellowship in Critical Care at the University of Manitoba in 1997 and received her MSc in Bioethics in 1999 from the Joint Centre for Bioethics and the Institute of Medical Science at the University of Toronto. From 1999-2001 she was Assistant Professor of Critical Care/Internal Medicine, Queen’s University, Kingston, Ontario. In March 2000 she was appointed Physician Leader of the national Ian Anderson Continuing Education Program in End-of-Life Care at the University of Toronto and is currently Associate Professor of Critical Care Medicine at the University of Toronto. In 2002, she was awarded the Queen’s Golden Jubilee Medal for contributions to Canada in recognition of her work in creating the Anderson Program and improving end of life care for Canadians. Dr. Hawryluck is co-author and editor of “Law of Acute Care in Canada” to be published shortly by Carswell, a division of Thomson Reuters.

Dr. Hawryluck is deeply involved in international humanitarian projects. She has worked with critical care and burn units in Indore India and Cote d’Ivoire on a variety of quality improvement and educational initiatives. She was co-creator and co-Director for RCCI of the first Doctorate in Medicine Program in Critical Care in the entire country of Nepal. She worked with the Nepal Medical Council as an international consultant to enact a Code of Ethics and Professionalism for all physicians in Nepal.

The All Families are Equal Act: Does it Fulfill its Potential?

Posted By Colleen Morawetz 

In November 2016, the Ontario Legislature passed the All Families Are Equal Act, which the Liberal government claims will “ensure equal treatment for all parents and children in the province”. This legislation marks an important shift for the province, whose former statutory regime – not having been updated since 1978 – did not explicitly address conception through assisted reproductive technologies or third-party arrangements. The new legislation’s purpose is commendable: to ensure that all types of parents are treated equally, regardless of their sexual orientation, reproductive capacity, or the number of parental figures in a child’s life. However, the statute has faced criticism from multiple angles.

The Good

The All Families Are Equal Act proposes an entirely new scheme for determinations of parentage when a child is conceived through surrogacy—whether the child is genetically related to both intended parents (gestational surrogacy, where an embryo is implanted into a surrogate mother’s uterus through in-vitro fertilization) or not (either gestational surrogacy with a donated egg and/or sperm, or traditional surrogacy where the surrogate mother’s own ovum is artificially inseminated).

Previously, opposite-sex intended parents would have to make a declaration of parentage in court in order to override presumptions that the surrogate mother and her own partner, if applicable, were the parents of the child. Furthermore, same-sex partners (two gay men, or the female partner of a woman who gave birth) could only establish parentage through adoption. The legislation now provides a streamlined, out-of-court process for intended parents. Rather than requiring a judicial application, intended parents will be able to use a mail-in application to register themselves as the legal parents of their child.

According to the Ontario government, this shift will provide greater clarity and certainty during the surrogacy process, while offering greater legal security to parents in the event of a medical emergency. Indeed, the Bill was first introduced as Cy and Ruby’s law. Named for the children of Jennifer Mathers McHenry and her wife Kristi, the Act sought to rectify situations such as theirs: if Jennifer, the genetic mother and carrier of the child, had died during her difficult childbirth, Kristi would have been in a legally precarious situation and may not have been able to take their baby home.

Cheri DiNovoOntario New Democrat MPP Cheri DiNovo introduced the Bill that, in two short months, passed into law as the All Families are Equal Act. || (Source: Christopher Kastarov // Huffington Post)

The All Families Are Equal Act explicitly recognizes that ovum and sperm donors are not the parents of a child; however, the legal status (or lack thereof) of intended parents and donors requires corroboration through a written pre-conception agreement. The legislation also allows for up to four people to be registered on a child’s birth certificate—a codification of the Ontario Court of Appeal’s 2007 decision in AA v BB.

This legislation, as proclaimed by its title, aims to provide equal legal treatment for parents with non-“traditional” family structures or family building processes. Its elimination of gendered legal terms such as “mother” and “father” in favour of “parent” is an important semantic shift towards normative inclusion of non-heterosexual parental setups. Moreover, fertility law experts such as Sara Cohen applaud the act for requiring surrogate mothers to have independent legal counsel in the negotiation of the pre-conception agreement, which may help guard against the exploitation of vulnerable women.

The Bad

However, certain aspects of this new legal regime may have unintended consequences or even run counter to the Act’s stated goals. First, the statute renders all surrogacy contracts unenforceable, whether they concern gestational or traditional surrogacy. Unlike in Quebec, where all surrogacy agreements are absolutely null as per article 541 of the Civil Code, Ontario courts had previously been willing to enforce gestational surrogacy contracts.

As healthcare lawyer Lisa Feldstein notes, surrogacy contracts are sophisticated legal instruments that contain numerous provisions relating to contingencies beyond parentage. For example, provisions may stipulate who will be allowed in the delivery room, who the surrogate should give the child to in the event of the intended parents’ divorce or death, how many embryos will be transferred to the surrogate’s womb, and obligations for support of the surrogate that the intended parents will assume should she require pre- or post-birth bedrest.

Feldstein fears that without the judicial oversight that accompanies the possibility of enforcement, the rights and interests of all parties will not be sufficiently protected. Given how the demand for surrogate mothers dwarfs supply in Canada, where surrogate mothers cannot be paid beyond reimbursement for reasonable expenses, Feldstein argues that rendering all agreements unenforceable will erect additional barriers to family-building by creating a chilling effect. Further, such barriers can only increase socioeconomic inequality in access to reproductive services, as wealthier would-be parents turn to more permissive jurisdictions abroad.

Healthcare professionals should not have to (and are not equipped to) interpret legal surrogacy agreements, particularly in the context of emergency medical situations.

Moreover, the All Families Are Equal Act provides that until the child is seven days old, the surrogate mother must be consulted as a substitute-decision maker in the event that medical treatment is necessary—unless the intended parents and the surrogate have stipulated otherwise in their (purportedly unenforceable) pre-conception agreement. Both Cohen and Feldstein note that healthcare professionals should not have to (and are not equipped to) interpret legal surrogacy agreements, particularly in the context of emergency medical situations. Feldstein argues that this provision undermines the equality thrust of the Bill, as it treats parents who use a surrogate differently from other parents by giving legal weight to the surrogate’s post-birth medical opinions.

Cohen notes further that the “predictability” of the new, streamlined parentage process comes at the price of increased potential for fraud, duress, and undue influence. Without judges scrutinizing pre-conception agreements before declaring parentage, Cohen fears that marginalized women may be coerced into surrogacy. Further, the adoption process may be short-circuited by would-be parents who find an already pregnant woman and subsequently back-date a pre-conception agreement for “traditional surrogacy”. Cohen argues that judicial checks are necessary to determine whether independent legal advice has indeed been provided to all parties and whether the child was conceived through a process that corresponds to the written arrangement.

Given Cohen’s concerns and the underlying rationale for Canada’s criminalization of commercial surrogacy (preventing the bodily exploitation of women), perhaps there are compelling reasons for maintaining a judicial declaration system for establishing parentage. Cohen argues that an administrative scheme like that in Illinois may provide a middle ground between judicial processes and the “mail-in” system, while Feldstein holds that legitimacy could be enhanced by requiring consent to be recorded on a prescribed legal form.

8642605447_f84e663fa6_zWhile the All Families are Equal Act improves access by streamlining the process, experts warn that the lack of enforceability or judicial review puts women in vulnerable situations at risk of undue influence, fraud, and exploitation. || (Source: Jan Truter // Flickr)

Cohen outlines two final concerns about the legislation: first, that the scheme doesn’t allow children born through surrogacy to have the same privacy in court processes as do adoptees (further undermining the statute’s equality rationales), and second, that the Act permits sperm donation through sexual intercourse. Cohen argues that this legal development, coupled with the recognition that donors are not parents, may allow biological fathers who simply may not want to be legal fathers to “opt-out” of parentage through a pre-conception agreement. Cohen fears, in particular, coercion that may result in a woman signing such an agreement, given the lack of judicial oversight.

Further, this provision creates serious inequality between men and women. Though ovum donors are not legally recognized as mothers, a woman cannot, when a child is conceived through sexual intercourse, simply contract out of parentage by creating a pre-conception agreement that designates her a traditional surrogate. Such a development would be dangerous, as it could leave children with no legal parent!

A simple remedy to this potential coercion and actual gender inequality would be not to recognize sperm donation through sex. At-home, “artisanal” artificial insemination is easy enough to do if both biological parents are serious about “non-traditional” family building, and it is unclear how much true, premediated “sperm donation” occurs via sexual intercourse.

Though ovum donors are not legally recognized as mothers, a woman cannot, when a child is conceived through sexual intercourse, simply contract out of parentage by creating a pre-conception agreement that designates her a traditional surrogate. Such a development would be dangerous, as it could leave children with no legal parent!

The Ugly

As expected, there have also been no shortage of reactionary, irrational critiques of the All Families Are Equal Act. Conservative activist organizations such as REAL Women of Canada and the ARPA fear the end of the heteronormative “traditional family”. They argue, respectively, that multiple parents simply “will not be able to agree” on parenting decisions (irrelevant to the legal status of parentage), and that the statute tears at the legitimacy of traditional families by recognizing “non-families” (a blatantly homophobic statement). The ARPA, further, argues that the Act is full of semantic mistakes; for example, the Act references the unimpeachably male fluid of sperm in the provision rendering donors non-parents, while generally avoiding the gendered term of “father”. Clearly, the ARPA’s legal counsel, in its thinly veiled homophobia, has ignored the fact that legal parentage has always been distinct from biological realities.

slide_480772_6580790_compressedSame-sex couples, whom have had the right to marry in Canada since 2005, often make use of donors and surrogacy to have a child of their own. The All Families are Equal Act grants greater access to these services and helps solidify a legal parental relationship between same-sex partners and their children. || (Source: Huffington Post)

The Potential

Despite its hysteria, REAL Women correctly notes the rapidity of the Bill’s life-cycle: NDP MPP Cheri DiNovo introduced the private member’s Bill a mere two months before it was passed. While legislative efficiency is to be admired at times, perhaps this lightning-quick process allowed lawmakers to skate over some of the critiques raised by experts such as Cohen and Feldstein. In fact, Feldstein presented certain concerns about the statute to the Standing Committee on Social Policy in October, but her suggestions were ultimately not incorporated into the final Bill.

Hopefully, the normative value of the All Families Are Equal Act, in addressing many forms of legal discrimination based on family status, will not overshadow the reasoned critiques raised above. This legislation is a step in the right direction for Ontario’s parentage regime. However, it should be amended to allow for, at the very least, enforceability of certain contractual arrangements and a medical decision-making model that maps onto both the legal reality of parentage and the equality goals of the Act itself.

How Bright is the Line: Children, Natural Remedies and Consent to Care

Posted By Jonathan Adessky & Matthew Dankner

In a diverse society, one can reasonably expect a diversity of child-rearing practices. Whether motivated by culture, religion or skepticism towards Western medicine, some parents opt to treat their children with various “unconventional treatments”. In fact, in the United States, it was found that use of complementary and alternative medicine for children is growing. What are the boundaries within which natural treatment for children resides, from both a legal and a medical perspective? We propose that legal and medical practitioners alike ought to keep an open mind in dealing with natural treatments consented to on behalf of children, while maintaining a healthy dose of skepticism and recognizing the boundaries set by paternalistic state regulation.

Canadian Legal Perspective

The extent to which natural medicine can provide a legally permissible alternative is restricted by the paternalistic voice of the law. Statutory protections for children impose a duty of care on parents to act reasonably in consenting to medical treatment on behalf of their children, to the extent that a refusal of conventional treatment options can qualify as a criminal act, even where alternative treatment plans have been adopted and irrespective of their subjective intent. In the recently decided case of R v Lovett, a mother opted to use natural remedies to treat her seven-year-old son’s throat infection, resulting in his death.

Pursuant to s. 215(1)(a) of the Criminal Code, parents have an obligation to provide the necessities of life for their kids, a duty which Ms. Lovett failed to perform by failing to seek out proper treatment for her child. Further, in R v Naglik Lamer C.J. established that parent’s intent must be addressed through an objective test, given that “as in the law of civil negligence, a duty would be meaningless if every individual defined its content for him or herself according to his or her subjective beliefs and priorities”.

7015509987_1ec05e3a0b_zThe law sets a high bar for a parent’s duty to ensure their child’s well being. The withdrawal of consent to conventional treatment risks criminal action if the child suffers bodily harm as a result. || (Source: Alex Proimos // Flickr)

The criminal justice system can also hold a parent liable for criminal negligence resulting in bodily harm or death of the child. The court in Lovett makes the distinction that, while similar to s. 215, criminal negligence elevates the offence: the departure from reasonable conduct is “more than just “marked” but rather “marked and substantial””. Such a departure, as stated by the court in R v Tutton, gives rise to an inference that the parents had at least some awareness of the risks or were willfully blind to them. If convicted under this head of criminal liability, the parent can face life imprisonment, while a s. 215 conviction carries a maximum sentence of five years. The overarching theme of these cases is that the price to pay can prove rather steep for choosing to treat one’s child with natural remedies in the stead of conventional medicine.

However, it is critical to discern tolerated alternatives from criminal acts. Surely, resorting to natural treatment will not always deprive a child of the necessaries of life. In fact, natural remedies may well provide many benefits by reason of health, religion or otherwise. Our goal is to raise the important questions that parents ought to pose, as the correct answers to such questions are often context-dependent.

The Medical Perspective

Medical practice is moving away from a paternalistic doctor-patient relationship to one that empowers patients to actively participate in important decisions regarding their care. More and more, doctors are giving some deference to parents who reject conventional medicine and prefer to use natural remedies for their children, and for good reason: in many cases, such remedies do work in treating a variety of ailments.

For example, aspirin is derived from bark of the willow tree, since traditional users noted its effectiveness in relieving pain and fever. Many years of study validated this anecdotal evidence, while demonstrating that the benefits of taking aspirin to treat particular ailments outweighed any adverse effects. To this day, much of Western medicine’s therapeutic arsenal is derived from such natural products that have been proven satisfactorily safe and efficacious. In fact, natural medicine is considered a direct pipeline to science-based medicine, with natural remedies that demonstrate value in properly controlled studies being actively developed into commonly used medications by the pharmaceutical industry.

1309697775_b01082fa14_z.jpgConventional treatments and pharmaceuticals are often concentrated extracts of the active ingrediant in natural remedies, such as the anti-inflammatory effects derived from the bark of the willow tree. || (Source: stu // Flickr)

However, care must be taken with regard to the safety of natural products. Among many other examples of natural products causing harm, grapefruit interferes with the metabolism of many life-saving drugs, causing them to reach lethal doses in certain patients. This example supports the point of caution emphasized by doctors when communicating with their patients: “natural” does not always equate to &ldquoi;safe” or “harmless”, particularly if the proposed natural remedies have not been extensively tested in the context of the dose taken and their interactions with other drugs.

Keeping these points of caution in mind, untested natural remedies can play an important role in patient care if employed carefully. Many of these remedies have simply not yet been tested extensively and, if they were, would demonstrate clear benefits. However, the majority of these remedies likely would not demonstrate increased efficacy compared to a placebo. While this may discourage the use of such agents, the placebo effect is a true phenomenon and can lead to improvement in a subset of patients with certain conditions compared to taking nothing at all.

Overall, natural remedies have a role to play in modern medicine, including strengthening the doctor-patient relationship and spurring a placebo effect. This is particularly pertinent to patients of diverse cultural backgrounds or strong personal convictions that highly value natural remedies. However, caution must be taken with these remedies, given their unknown potential to interact with other medications, or even by certain patients desiring to withhold modern treatment from their children.

Aboriginal Rights Exceptions

The status rights of First Nations peoples in Canada are governed by s. 35 of the Constitution Act, 1982. In applying the test from R v Van der Peet, which characterizes an activity as an Aboriginal right if it was a practice integral to a Nation’s culture before European contact, Edward J in Hamilton Health Sciences Centre v. D.H. found that Aboriginal healing practices satisfy the test for protection under s.35 – not without controversy. For this reason, Makayla Sault’s mother was permitted to take her daughter off of conventional chemotherapy in favour of natural treatments despite a 75% chance of survival with the former. The child passed away, and her mother’s decision was considered perfectly legal.

As the Truth and Reconciliation Commission wrote, “the country [Canada] has a rare second chance to seize a lost opportunity for reconciliation”.

The question follows: does s. 35 confer upon First Nations parents an unrestricted right to select traditional treatment for their children? Peter Hogg says otherwise. The constitutional scholar points to R v Sparrow, in which the court states that Aboriginal rights are not absolute and measure up to a balancing test similar to s. 1 of the Constitution. If First Nations healing practices may be subject to infringement in exceptional circumstances, should the court then intervene in cases similar to Makayla’s? Before addressing that question, which is posed without a clear answer in reach, the deep-rooted, systemic discrimination that resulted from undermining integral aspects of First Nations cultures demands serious consideration. As the Truth and Reconciliation Commission wrote, “the country [Canada] has a rare second chance to seize a lost opportunity for reconciliation”. Therefore, we should take care not to dismiss certain practices as quaint or arcane.

Marking the Boundaries

Given the points raised above, how far is too far? While it is impossible to draw a bright line as a definitive answer, we can offer some guidance. Reconciling the legal and medical perspectives places natural medicines somewhere in between two polar ends: absolute illegality and unlimited endorsement. Doctors are keeping an open mind to natural remedies, which are medically valuable to certain extents. However, parents ought not to disregard conventional medicine. If a parent becomes aware of the necessity to provide conventional medicine to a child, be it by observing a deterioration in condition or from a medical professional’s evaluation, failure to do so can result in lengthy jail time.

For First Nations parents, the law may take a more culturally-sensitive position. However, Aboriginal rights are not absolute and may be infringed upon if that infringement is justified. Therefore, jurists, healthcare professionals, and lawmakers have to adhere to an approach of cultural sensitivity and respect for individual choice in the medical context, while recognizing that paternalistic state regulation is desirable in certain cases.

This article was co-authored by McGill University students Jonathan Adessky (B.C.L./LL.B. candidate, Faculty of Law) and Matthew Dankner (M.D., C.M., and PhD. candidate, Faculty of Medicine).

Sound Body, Ailing Mind: the Complexities of Assisted Dying for the Mentally Ill

Posted By Liam Harris

Introduction

One of the more salient questions surrounding Canada’s new assisted dying regime concerns requests by persons suffering exclusively from mental illnesses to end their lives. While this option is not currently available in Canada, due to the requirement that death be reasonably foreseeable, Bill C-14 requires the government to conduct an independent review of issues relating to these requests within the next two years.

Global approaches to this issue are mixed. Belgium and the Netherlands permit such requests in cases where the mental illness causes “unbearable suffering with no prospect of improvement”, but the American Psychiatric Association recently approved a policy statement preventing its members from participating in assisted dying. While this is somewhat of a moot point in the United States, where medically assisted dying is not legal, the statement may have an impact here in Canada given the important persuasive role the APA plays in defining the “voice and conscience” of the psychiatric profession generally.

The right to die of the mentally ill has the potential to become the next great battle in the debate around medically assisted dying, raising unique legal challenges and flagging a potential role for the psychiatric profession in non-state regulation of the practice. While mental illnesses are diverse and not all challenges will apply to all conditions, the following themes and legal issues are expected to pose challenges in at least some cases.

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The Carter decision catalyzed Parliament to legalize assisted dying for those suffering from an irremediable physical illness, but what of those whose suffering is mental? || (Source: Dying With Dignity)

Reasonably foreseeable death

The requirement that “natural death has become reasonably foreseeable” excludes mental illness from the ambit of Canada’s new legislation. Since mental illness does not result in natural death, it alone can never constitute the grievous and irrevocable medical condition required to allow the option of physician-assisted death under section 241.2 of the Criminal Code. Notably, the inclusion of this criterion proved controversial at the drafting stage, as it contravened a recommendation of the Joint Special Committee that non-terminal conditions be included. Indeed, Professor Peter Hogg of Osgoode Law School suggested during his testimony that including this condition would make the law vulnerable to constitutional challenge as the Supreme Court alluded to no such criterion in Carter.

Allowing requests for physician-assisted death where mental illness is the sole medical condition is only possible if Parliament removes the reasonable foreseeability requirement. Interestingly, the outcome of the independent review may impact the approach to other non-terminal physical illnesses. Allowing cases of mental illness to circumvent the legislation’s criteria while continuing to require it in the case of physical illness appears logically inconsistent.

Never irremediable?

Another issue that arises in the cases of mental illness is the degree to which mental illness fulfills the criteria of being “irremediable”. Under Canada’s legislation, the requesting individual’s condition must be “grievous and irremediable”, which includes the criteria that it be “incurable” and cause “an advanced state of irreversible decline in capacity”. Psychological problems, being less tangible and less well-understood than physical ailments, complicate the assessment of remediability.

In conformity with the increasingly central recovery-based model of treatment, a variable combination of medical, therapeutic and social interventions might manage suffering such that mental illness is deemed “remediable”. In particular, in light of the fact that a large proportion of individuals suffering from mental illness do not have access to the resources they require, it may be difficult to say with certainty that a given case of mental illness cannot be effectively remedied: there is always the possibility that a different approach or more social support could reverse the decline in an individual’s condition.

Even though a mental illness may be incurable, it seems somewhat less likely, due to the complex causes and varied treatment options, that a psychiatrist would be willing to say that the progress of any given mental illness is irreversible and, therefore, irremediable. Without clear criteria for determining the remediability of mental illnesses, it is unclear how these cases could fit within the C-14 scheme.

Informed Consent

Another issue that complicates assisted dying for the mentally ill is their ability to give the informed consent as required to initiate the assisted dying process. Given that suicidality is a symptom of mental illnesses like severe depression, it may be difficult to separate a reasoned judgment to end suffering from a symptom of the disease. Deciding to end one’s life due to psychological suffering inevitably conflicts with the legal notion that psychological conditions that alter our reasoning can vitiate consent.

File:Supreme Court of Canada by night.jpg

The Carter decision and Bill C-14 took great care in handling issues regarding the patient’s consent. Providing medical assistance in dying for mentally ill patients will prove an even more onerous task. || (Source: Wikimedia Commons)

While most cases of mental illness do not result in a loss of general legal capacity, the president of the Canadian Psychiatric Association believes that when it comes to the specific decision of ending their lives, those suffering from certain mental illnesses may not have capacity to give informed consent. The forthcoming independent report will hopefully address the obtention of informed consent from patients whose decision-making capacity is impaired, but this will not be an easy task.

Resistance from Psychiatrists

Furthermore, another key consideration relevant to assisted death for those with mental illnesses is the extent to which the psychiatric profession may exert its normative power to blunt the occurrence of assisted death by psychiatrists. Bill C-14 does not require doctors to provide medical assistance in dying, leaving them free to decline to offer the treatment as long as they comply with their professional obligations. If Canadian psychiatrists adopted a similar policy position as the APA has just taken, we may see the profession en masse refuse to offer assisted death for patient who are suffering solely from a mental illness. Therefore, even if the government adopts changes to allow the practice, the practical effect could be minimal if psychiatrists continue to oppose the idea.

Conclusion

As our government continues to study the issue of medical assistance in dying for persons suffering exclusively from mental illness, it remains an open question if and how these cases will be brought within the Bill C-14 framework. The particularized treatment of mental illness as compared to physical illness reflects an ongoing struggle to understand and destigmatize psychiatric conditions. It seems natural in this largely uncharted territory – perhaps we should turn to medical experts to guide lawmakers – and it remains to be seen what kind of influence the psychiatric community will have on the future of this legal issue in Canada. Of equal importance, though, is ensuring a place for the voices of those suffering from mental health issues at the center of this discussion. Only through meaningful engagement with a broader subset of stakeholders can the legislature and the Courts strike the fine balance required for such a sensitive issue.

From Lab to Court: Neuroscientific Evidence and Legal Decisions in Disorders of Consciousness and Beyond

Posted By Dr. Anastasia Greenberg

For many, the term “vegetative state” brings to mind the American case of Terri Schiavo and her decade long legal battle (1992-2002) surrounding the “right-to-die”. Terri sustained serious brain damage in 1990 following a cardiac arrest, which led to an eventual diagnosis of a persistent vegetative state. Terri’s husband fought for the right to remove her feeding tube while her parents were desperate to keep her alive, believing she was conscious. Ultimately, Terri’s artificial life support was withdrawn in 2005, stirring an ongoing debate on the difficult ethical and legal implications in similar cases. Progress in neuroscience gives us hope in being able to answer key questions about brain and behaviour with direct relevance for the legislature and the courtroom.

Disorders of Consciousness

Vegetative state can be defined as “wakefulness without awareness”, in which patients show normal sleep-wake cycles (unlike a coma which is analogous to a deep sleep) but without any evidence of purposeful behaviour connected to awareness of the self or the environment. While wakefulness is straightforward to detect based on sustained eye opening and specific electroencephalogram (EEG) activity, the existence of awareness poses a much more complicated question.

In order to measure consciousness or awareness, we rely on behavioural evidence of “command following” as a proxy to make inferences about mental states. For example, locked-in syndrome patients have lost almost all ability to make voluntary movements but retain the ability to respond to “yes” or “no” questions by moving their eyes or eyelids in a consistent manner. This residual ability to form purposeful behaviour leaves no question that the patient is indeed conscious.

Hospital BedAdvances in medical science have changed our understanding of consciousness in patients in a “vegetative” state. || (Source: Flickr // Presidencia de la República Mexicana)

Unfortunately, the difficulty with vegetative state patients is that they do not show any such meaningful behaviour or evidence of language comprehension. These patients will stare into space, move their eyes in an inconsistent manner and may even burst out into laugher or tears; however, none of these behaviours are linked to environmental stimuli.

For a long time, it was believed that such patients were completely unconscious. However, in the last decade this orthodox notion has faced serious scrutiny, regarding at least some of these patients, due in large part to the work of Canadian neuroscientist Dr. Adrian Owen from the University of Western Ontario.

Neural Activity as A Proxy for Behaviour

Dr. Owen’s research method allows certain patients who are labelled as vegetative to communicate solely by modulating their brain activity, recoded using functional magnetic resonance imaging (fMRI). fMRI makes inferences about brain activity indirectly by measuring blood flow, which is temporally linked to neural activity in that recently active cells require a fresh supply of oxygenated blood. This allows scientists to gauge which parts of the brain are involved in various cognitive tasks with high spatial resolution.

In a notable study, Dr. Owen’s team asked “vegetative state” patients in the fMRI scanner to imagine playing tennis or to imagine walking around their house from room to room. When healthy patients are asked to perform this same task, imagining playing tennis shows activation in a part of the brain called the supplementary motor area (SMA) while walking around the house activates parahippocampal corticies (PPA) which are involved in real and imaginary spatial navigation.

Remarkably, a portion of vegetative state patients (17%), diagnosed based on internationally recognized behavioural standards, show consistent SMA activity when instructed to imagine playing tennis and PPA activity in the case of walking around the house. Even more remarkably, they were then able to use imagining playing tennis or imagining walking around the house to respond “yes” or “no” to questions – with 100 percent accuracy. Using their imagination, this select group of vegetative state patients responded correctly to questions about their own name, their parents’ names, the current year, and so forth.

Ethical Issues

These findings make legal characterizations pertaining to the decision to withdraw nutrition and hydration even more complicated. In a personal communication with Dr. Owen, he mentioned that one such patient was asked whether he wished to continue living. He responded: “yes”. This is exciting news in the context of legal decision-making; perhaps we could simply ask the fMRI-responsive patients to decide their own fate.

24130148711_12dae8e061_kfMRI scans allow doctors to prompt and make inferences about neural activity in patients in a “vegetative” state, in some cases enabling a limited channel of communication. || (Source: Flickr // NIH Image Gallery)

But what can be said for the remaining 83% of patients? Can we conclude that they are simply not conscious, and thus truly fit their derogatory label of “vegetative”? The problem with such a conclusion is one of false negatives. When someone consistently “responds” to high-level questions with their brain activity, we can be sure of their consciousness – arguably to the same extent as someone who is saying “yes” and “no” in plain English (or French).

However, when a vegetative patient fails to show any meaningful fMRI responses, we cannot be certain that they are not conscious. Consider, for example, patients that have lost function in their auditory cortex and thus cannot hear the task instruction nor questions – not to mention many more nuanced neural complications that may prevent successful performance despite consciousness.

Legal Applications for Neuroscience Data

Dr. Owen’s work has received enormous media attention and, most relevant to the legal context, Dr. Owen recently submitted an affidavit that was admitted into evidence by the Supreme Court of British Columbia (BC) in Ng v Ng (2013). Kenny Ng was involved in a motor vehicle collision that left him in a minimally conscious state (higher functioning than vegetative) from 2005 onward. Kenny’s wife, who was entitled to give substitute consent for Kenny under BC’s Patient’s Property Act (PPA) and Health Care (Consent) and Care Facility (Admission) Act (HCCFA), decided to take Kenny off of life support in spite of opposition from his siblings.

In a personal communication with Dr. Owen, he mentioned that one such patient was asked whether he wished to continue living. He responded: “yes”.

Dr. Owen’s affidavit could not speak specifically to Kenny’s case given that Kenny never participated in any studies by Dr. Owen’s team. However, it suggested that Kenny could potentially fall into the category of those with awareness and is a good candidate for further study. Ultimately, though, the court ruled in favour of Kenny’s wife since she held the decision-making authority pursuant to legislation and since the removal of feeding was found to be reasonable given the available medical evidence supporting Kenny’s poor clinical prognosis. The court had no legal mechanism by which to order that Kenny be tested by Dr. Owen, a neuroscientist, and set aside the recommendations of Kenny’s team of medical doctors.

An Eye to the Future

The potential applications of neuroscientific evidence in courtrooms and in end-of-life legislation are exponentially increasing. Publications in the developing study of neuroscience and law, coined “neurolaw”, have spiked since 2006. Both neuroscientists and legal scholars express optimism, but they also emphasize erring on the side of caution when admitting flashy neuroscience into court. While the direct legal relevance of Dr. Owen’s work for use in a courtroom setting is persuasive, it also presents many opportunities for abuse, or innocent misinterpretation, of neuroscientific information.

US courts have admitted brain scans (including fMRI) into evidence in criminal cases involving insanity defenses (called defense of mental disorder in Canada), as well as highly controversial fMRI lie-detection evidence. In Canada, fMRI data has not yet seen its day in court and may raise serious Charter issues in relation to brain privacy. Dr. Owen’s affidavit in Ng v Ng is one of only two Canadian cases to ever mention fMRI in more than an incidental way. In a controversial ruling in Italy, a court reduced a sentence for murder after being presented with neuroscientific evidence in the form of brain scans and genetic evidence that suggested links to poor impulse control.

CourtLegislators and the courts will have to grapple with the risks and benefits of allowing the adducement of neuroscientific evidence before a judge. || (Source: Flickr // Jordan Schulz)

A deep understanding of neuroscientific technology and methodology is invaluable in drawing valid conclusions based on the data presented. A jury may interpret a colourful fMRI image as analogous to an X-ray – being able to “see” brain activity – when in fact the image is created through a series of inferential steps involving complicated statistical analyses performed on the data. These steps are peppered with human decisions about which statistical thresholds are to be used, which behavioural conditions should be compared, and so forth. Concerns over “overclaim syndrome” relate to the persuasive “wow” factor neuroscientific evidence evokes. In one study, mock jurors were more likely to give a verdict of “not guilty” if a defense of mental disorder was presented along with MRI images.

Neuroscientific evidence also has the potential to influence end-of-life legislation, such as BC’s PPA and HCCFA that were used to transfer consent to Kenny’s wife, by requiring neuroscientific interventions before transferring consent. Currently, however, such a provision can only exist in the parliament of dreams, as neuroscientific tests of consciousness are far from routine procedures.

Neuroscience and law have begun to converge, developing the field of neurolaw with international neurolaw conferences and societies bringing scholars and practitioners from both disciplines together to explore their mutual interests. Professor Henry T Greely of Stanford Law School predicts that neuroscience will revolutionize the law: while the consequences of this neurolaw revolution carry serious risks, a future that offers a “window into the mind” may prove more conducive to justice. For those conscious patients trapped behind a “vegetative” label, neuroscientific evidence may provide sufficient weight to tip the scales of justice.

Dr. Greenberg holds a PhD in Neuroscience from the University of Alberta, and recently began studies at the McGill Faculty of Law.