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Mental Health, Mental Illness and Addiction:

Overview of Policies and Programs in Canada

Report 1


PART 4

Research and Ethics

CHAPTER 10:
Research Into Mental Health,
Mental Illness And Addiction In
Canada

We believe that research is our most important weapon in our search for a better understanding, improved treatments and eventually a cure for devastating mental illnesses.

[Canadian Psychiatric Research Foundation, Today, Newsletter, Vol. 3, No. 1, Spring 2003.]

INTRODUCTION

In Canada, the federal government is the major sponsor of research into mental health, mental illness and addiction, while university-based scientists in research institutes and university-affiliated hospitals are the major performers.  The Canadian Institutes of Health Research (CIHR), through its Institute of Neurosciences, Mental Health and Addiction (INMHA), is the primary federal funding agency for research into mental health, mental illness and addiction.

As with all CIHR-funded health research, research in mental health, mental illness and addiction encompasses the full spectrum of activities ranging from biomedical, to clinical, to health services, and to population health research:

·        Biomedical research pertains to biological organisms, organs and organ systems.  For example, this type of research would study the level of serotonin (a brain chemical) in patients suffering from eating disorders such as Bulimia Nervosa.

·        Clinical research relates to studies involving human participants, healthy and ill.  An example would include clinical trials on humans to test the toxicity and effectiveness of a possible new treatment for schizophrenia that, in basic biomedical research, has shown promising results and can then be safely studied in terms of its net and comparative (relative to other drugs) benefit to patients.

·        Health services research embraces the administration, organization and financing mental health services delivery and addiction treatment.  An example might be research into the mechanisms for caring for patients with bipolar disorder, from the manner of their diagnosis, through their treatment in hospital, then on an out-patient basis, or at home, to their long-term follow-up through hospital and community care.

·        Population health research focuses on the broad factors that influence mental health status (socio-economic conditions, gender, culture, literacy, genetics, etc.).  An example might be a study using large databases of health information to learn whether the incidence of attention deficit and hyperactivity disorder is associated with environmental or other factors.

This chapter provides an overview of the state of research into mental health, mental illness and addiction in Canada.  Section 10.1 summarizes the role and mandate of CIHR and INMHA and highlights a number of issues raised by witnesses.  Section 10.2 provides information on federal research funding for mental health, mental illness and addiction and examines the question of whether funding should reflect the burden of disease.  Section 10.3 briefly reviews other sources of funding for mental health and addiction research.  Section 10.4 discusses issues related to the translation of research knowledge into actual services and supports for individuals with mental illness and addiction.  Section 10.5 discusses the need for a national research agenda for mental health, mental illness and addiction.  Section 10.6 provides some Committee commentary.

10.1      CIHR AND INMHA

In Canada, there has been a net improvement in the past three years following the creation of the Canadian Institutes of Health Research, as well as an improvement in research funding, particularly for mental health. However, there is still great room for improvement.

[Michel Tousignant, Professor, Centre de recherche et d’intervention sur le suicide et l’euthanasie, Université du Québec à Montréal (14:41)]

As part of its commitment to becoming one of the top five research nations in the world, the federal government created in 2000 the Canadian Institutes of Health Research (CIHR).  CIHR is an arms-length organization reporting to the federal Minister of Health.

CIHR takes an innovative, multi-faceted, problem-based and multidisciplinary approach to health research.  This approach applies all types of research (biomedical, clinical, health services, population health) to disease mechanisms, treatment, prevention and health promotion.  The majority of research funded by CIHR is investigator-driven (70%); 30% is reserved for strategic initiatives to respond to health challenges and scientific opportunities of high priority to Canadians.

CIHR's approach to research is facilitated by its structure, which brings together researchers across disciplinary and geographic boundaries in its 13 Institutes, each of which addresses a specific domain of health research.  One of these 13 institutes is the Institute of Neurosciences, Mental Health and Addiction (INMHA).[484]

INMHA’s creation marked the first focal point established in Canada for research into mental health, mental illness and addiction.  INMHA supports research to enhance mental health, neurological health, vision, hearing, and cognitive functioning and to reduce the burden of related disorders through prevention strategies, screening, diagnosis, treatment, support systems, and palliation.  As shown in Table 10.1, INMHA covers a wide range of research areas.

TABLE 10.1

AREAS OF RESEARCH SUPPORTED BY INMHA

·        Mental health and neurological health promotion policies and strategies

·        Addiction prevention policies and strategies

·        Health determinants – to elucidate the multi-dimensional factors that affect the health of populations and lead to a differential prevalence of health concerns

·        Identification of health advantage and health risk factors related to the interaction of environments (cultural, social, psychological, behavioural, physical, genetic)

·        Disease, injury and disability prevention strategies at the individual and population levels

·        Head injury prevention, treatment, and rehabilitation

·        Addiction, mental health, and dysfunction of the nervous system affecting sensation, cognition, emotion, behaviour, movement, communication, and autonomic function

·        Clinical research and health outcomes research into diagnostic technologies and methods; therapies; treatment, care, and rehabilitation models (long and short-term)

·        Co-morbidity of conditions and impacts on prevention, diagnosis, treatment, care and rehabilitation

·        Design and implementation of health services delivery – from prevention, to screening, to diagnosis, to intervention or treatment, to rehabilitation, to palliation

·        Development and implementation of health technologies and tools (e.g. imaging, bio-engineering, drug delivery technologies)

·        Development, regulation, function and dysfunction of the central, peripheral, and autonomic nervous systems

·        Human psychology, cognition and behaviour; sleep and circadian biology; pain

·        Ethics issues related to research, care strategies, and access to care (e.g. informed consent; hospitalization; addiction, mental health and the justice system)

Source: CIHR’s Website (http://www.cihr-irsc.gc.ca/e/institutes/inmha/9591.shtml#).

INMHA’s strategic plan for 2001-2005 lays out five strategic priorities:

1.      To foster and develop a capacity for innovation in research in neurosciences, mental health and addiction that will strengthen Canada’s health research milieu in these fields and enhance its competitive position on the international scene. The focus areas include training, strategic initiatives, research in emerging areas and, research in bioethics;

2.      To pursue and sustain collaborative partnerships with governmental, non-governmental and volunteer health organizations as well as pharmaceutical and biotechnology industries that will enable the INMHA to share, develop, obtain or leverage resources required to accomplish its mandate;

3.      To promote linkage and exchange between the research community and municipal, provincial and national levels of decision-makers as well as the users of research results, including NGOs, through structured efforts aimed at knowledge translation (see section below);

4.      To develop the INMHA’s presence on the international stage through joint research, training and funding initiatives with scienctific and research funding agencies in other countries; and,

5.      To establish an organizational and an operational structure that will enable the INMHA to accomplish its goals.[485]

Witnesses and researchers largely supported CIHR’s new approach to mental health, mental illness and addiction research.  There also exhibited strong trust in the fairness and rigour of CIHR’s peer-review mechanism.  For example, in their paper to the Committee, Dr. Shitij Kapur and Dr. Franco Vaccarino, from the Centre for Addiction and Mental Health (Toronto), stated:

(…) there is an important recognition and valuation of the role of CIHR in [mental health, mental illness and addiction] research. The rigour and transparency that CIHR brings to its evaluations and competitions is highly regarded and is seen as an indispensable mechanism to fill the “investor-driven” spectrum of research.[486]

Witnesses acknowledged the multidisciplinary approach taken by CIHR as a positive step in research into mental health, mental illness and addiction.  For example, Dr. Alan Bernstein, President of CIHR, observed:

Canada has an exceptionally strong and internationally recognized neuroscience community. By creating a single Institute that embraces neuroscience, mental health and addiction, we have explicitly embraced an integrative vision that is helping to bring together laboratory-based neuroscientists, psychologists, psychiatrists, social scientists, and health services researchers to focus on mental health and addiction.[487]

Dr. Rémi Quirion, Scientific Director of INMHA, also pointed to the excellence of research into mental health and mental illness in Canada, but stressed that research capacity was an issue in the field of addiction:

Canada is one of the world leaders in the area of neuroscience research. In terms of the impact of our discoveries in neuroscience, we rank second or third. We therefore have excellent capacity. We are quite strong in the area of mental health. We need to do some rebuilding on the addiction side: we lost many of our significant researchers in the 90s.[488]

Furthermore, most witnesses welcomed the inclusion of population health research and health services research as part of CIHR’s mandate.  They explained that this contrasted with the historical focus of CIHR’s predecessor, the Medical Research Council, on biomedical research.  The Committee was told, however, that population health research and health services research remain relatively weak in the fields of mental health, mental illness and addiction.  In their paper, Kapur and Vaccarino contended that it is important to redress this situation, given the effects of the broader determinants of health on mental illness and addiction.[489]

Text Box: Research must inform mental health service delivery. We need to know what works and what doesn’t. We need to make informed decisions. We also must translate research knowledge into action.
[Dr. James Millar, Nova Scotia Department of Health, Brief, 28 April 2004, p. 11.]
With respect to health services research, a literature review suggested that there is still much to be learned in Canada about best practices to provide care and supports to individuals with mental illness and addiction whether in inpatient care, outpatient care, crisis response, housing, employment or self-help.[490]  The authors of the review indicated that, for those interventions where there is the strongest evidence relating to their effectiveness, there remains a pressing need for more detailed information about what works for whom.  Where the evidence of effectiveness is unclear, more creative approaches are needed to assess effectiveness of specific interventions when traditional randomized controlled trials are not feasible or appropriate.  Identifying best practices is essential to guide decisions about who should receive treatment resources and where, what treatment interventions should be provided, and how to provide the assurance that the care delivered is appropriate for the patient/client’s needs.

Although many witnesses lauded the unique Canadian approach of fostering collaboration amongst researchers and between researchers and other organizations, some complained about heavy restrictions and major obstacles that prejudice the validity and quality of research and consume too much of the researchers’ time.  For example, Michel Tousignant, Professor, Centre de recherche et d’intervention sur le suicide et l’euthanasie, Université du Québec à Montréal, told the Committee that researchers could spend many months, sometimes up to year, to fulfill all INMHA/CIHR’s criteria before even starting a research project.  He explained that as many as three ethics committees – university, research centres and hospital, –review a proposal.  While ethics committees exist to protect everyone’s interests, Professor Tousignant pointed out that very little time is allocated by them to consult with researchers who may also be required to submit protocols to the Access to Information Commission, which further delays the initiation of research projects and places another layer of bureaucratic burden on investigators.[491]

10.2      FEDERAL FUNDING FOR RESEARCH INTO MENTAL HEALTH, MENTAL ILLNESS AND ADDICTION

(…) the funding of mental health and addictions research in Canada is currently inadequate. Mental health and addictions are under funded in an absolute and a relative sense. When one combines this systemic under funding, with the impact of stigma, the limitations of the NGOs fund-raising in this area as well as the lack of commercial incentives for a lot of these activities, the under funding becomes even more acute. Given that the other constraints cannot be easily overturned (stigma, limits to fund-raising in this area, lack of commercial incentives) – it is critical that the federal government show leadership in securing fair funding for mental health and addictions research.

[Dr. Shitij Kapur and Dr. Franco Vaccarino, Centre for Addiction and Mental Health (2004)]

10.2.1   Level of Federal Funding

CIHR, the primary funding agency for mental health and addiction research in Canada, has allocated $93 million to INMHA from its total base budget of $623 million for the 2003-2004 fiscal year.  About $33 million from the INMHA budget goes to mental health and addiction research, or 5.3% of the total envelope of CIHR health research funding.  The remaining $60 million is spent on fundamental neuroscience research, some of which, along with other health research, may well also contribute to a greater understanding of mental illness and addiction.

Dr. Bernstein stressed that INMHA currently receives the largest allocation of CIHR funds, followed by the Institute of Circulatory and Respiratory Health ($64 million) and the Institute of Infection and Immunity ($52 million).[492]

INMHA, together with the Institute of Aboriginal People’s Health, created the National Network for Aboriginal Mental Health Research (NNAMHR) in the spring of 2003 with a budget of $170,000 per year for four years.  Its mandate is to conduct research in partnership with Aboriginal communities and academic researchers with the goal of training new researchers and developing the research capacity necessary to address the particular mental health needs of Aboriginal peoples.

In addition to CIHR, federal funding for research into mental health, mental illness and addiction is also available from the Social Sciences and Humanities Research Council (SSHRC).  In particular, SSHRC supports research in the broad area of social psychology.  Some 1.5% (approximately $2.5 million) of its total base budget of $167.5 million went to mental health research in 2002-2003.[493]

The Natural Sciences and Engineering Research Council (NSERC) is the third and final federal funding agency for health research.  Clinical psychology is not eligible for NSERC support nor is brain research a key focus.  But NSERC will consider projects relating to fundamental psychological processes, their underlying neural mechanisms, their development within individuals and their evolutionary and ecological context.  Funding allocations specific to mental health, mental illness and addiction are included within the category “psychology” under “brain, behaviour and cognitive science”.  In 2003, 113 projects were funded within this category at a cost of approximately $3.25 million,[494] which corresponds to 0.5% of the NSERC grants and scholarships budget of just over $600 million.

Other sources of federal funding for research into mental health, mental illness and addiction may include Statistics Canada, Canada’s Drug Strategy (which funds the Canadian Centre on Substance Abuse), Health Canada, Correctional Service Canada (Addictions Research Centre), and the Canadian Health Services Research Foundation.  The Committee did not receive information on the level of funding provided by these sources.

10.2.2   How Much Should the Federal Government Spend?

Text Box: I want to make it very clear that the research in mental health and mental illnesses is underfunded in Canada compared with the costs to society.
[Dr. Rémi Quirion, INMHA (14:8)]
Several witnesses supported the view that the proportion of health research dollars allocated to mental health, mental illness and addiction was not adequate.

In their report, Dr. Kapur and Dr. Vaccarino noted that there are no guidelines in Canada (nor elsewhere, for that matter) for what the total funding envelope for health research should be and how funding for health research should be allocated among disciplines/research fields.  In the absence of such guidelines, they suggested two approaches: first, to examine health research funding as a function of the relative burden of illness, and second, to compare research funding patterns in other jurisdictions.[495]

As discussed in Chapter 5 and Chapter 6, the prevalence of mental illness and addiction in Canada is high and the economic burden enormous.  Nearly as many individuals battle with depression as have cardiovascular disease.  Many witnesses have argued reasonably that mental illness and addiction impact on society as powerfully as any other class of disease or condition and that this burden should be reflected directly in the funding dedicated to research into mental health, mental illness and addiction.

A paper by the Autism Society Canada ranked 14 diseases according to prevalence rates and CIHR dollars for research per affected person.  AIDS, which affects 1 Canadian in 500, is the most richly funded area of research, receiving from CIHR over $1,500 per affected person.  Attention deficit and hyperactivity disorder (ADHD), which affects as many as 1 Canadian in 17, is last on the list at $0.09 (nine cents) per affected person.  Schizophrenia, probably the most disabling of mental illnesses, ranked 7th; it affects 1 in 100 and receives from CIHR about $84 per affected person.  Autism, with a prevalence rate of 1 in 200, ranked 8th with CIHR funding amounting to $67.10 per patient/client.[496]

In a letter to the Committee, Dr. Alan Bernstein, President of CIHR, estimated that, if funding were to be provided in relation to the burden of disease, CIHR’s support for mental illness and addiction would be at least $80 million per year.  By this standard, CIHR’s current expenditure of approximately $33 million is very low.  Nevertheless, Dr. Bernstein maintained that research into mental health, mental illness and addiction receives an appropriate a proportion of CIHR’s budget,[497] given that many factors have to be taken into account, including the capacity of researchers in the field to use research funding to best advantage.

The second approach suggested by Dr. Kapur and Dr. Vaccarino consists in comparing the federal government’s performance in terms of funding research into mental health, mental illness and addiction to that of other industrialized countries.  The National Institutes of Health (NIH) in the United States function similarly to CIHR through a number of “institutes”, the relevant ones for comparison being the National Institute of Mental Health (NIMH), the National Institute of Drug Abuse (NIDA) and the National Institute on Alcohol Abuse and Alcoholism (NIAAA).  In 2003, the total envelope of funding to the NIH amounted to US $27 billion; NIMH received US $1.4 billion, NIDA US $1 billion and NIAA US $0.4 billion.  Thus, research into mental health, mental illness and addiction in the United States received US $2.8 billion dollars, or just over 10% of the total funds allocated for health research, double the CIHR’s 5.3%.[498]

In the United Kingdom, the main funding agency for biomedical research is the Medical Research Council (MRC) which funds six research areas: people and population studies, including health services and the health of the public; genetics, molecular structure and dynamics; cell biology, development and growth; medical physiology and disease processes; immunology and infection; and neuroscience and mental health.  The most recent data available indicates that of the £292.6 million total base spending for the MRC in 2001-2002, some £74 million was allocated to neuroscience and mental health research and £18.9 million specifically to research into mental illness. This corresponds to 6.5% of the total allocated for biomedical research.[499]

On the basis of this information, a number of researchers in the field contended that Canada’s investment is not sufficient.

What measure should be used to determine the proportion of research funds for any given disease? Should it be merely prevalence rates, morbidity and mortality, disability, or the economic burden associated with the disease?  Should funding be determined on the basis of international comparative analysis?  Should it be allocated competitively on the basis of merit and promise among all the applications submitted to the granting agency concerned? Should it be determined after consideration of a combination of all of these measures?

Dr. Bernstein testified that formally allocating research spending on the basis of burden of disease to Canadian society implicitly assumes that there is no spill over in concepts, techniques or results from one area of research to another.  He explained that some of the most important advances in one disease area had their origins in a completely different area.  Therefore, it would not be appropriate to allocate research funding solely on the basis of prevalence rates or burden of disease.[500]  Dr. Bernstein provided two examples:

CIHR is funding several teams, in Vancouver, Toronto and Québec city, to identify the genes involved in bipolar disease/schizophrenia. The science and technology to do this came out of a much broader goal to clone the genes involved in any human disease. It’s reasonable to say that the identification of the gene(s) for human bipolar disease will be the single most important advance to date in bipolar disease research, and will transform approaches to diagnosis, treatment and perhaps prevention. And yet, the fundamental research that is making this possible had nothing originally to do with mental illness or indeed any particular human disease.

CIHR’s Institute of Aging, Genetics and Population and Public Health are planning a major initiative – The Canadian Lifelong Health Initiative (CLHI) – that will follow cohorts of newborns and seniors, and measure the genetic, psychosocial, economic, environmental and cultural determinants of health and disease. This initiative, which will require in excess of $100 million over 20-30 years, promises to tease out the multiple determinants of healthy aging and disease, particularly common and complex disorders like mental illness. How should we classify our investment in CLHI – mental illness, cardiovascular disease, arthritis, healthy aging, or all of the above?[501]

Determining the level of research funding on the basis of international comparisons also has drawbacks.  First, a large number of countries should be examined before making such a comparison; second, the data should be truly comparable; and third, the research capacities of the countries concerned should also be truly comparable.

10.3      OTHER CANADIAN SOURCES OF FUNDING

10.3.1   Pharmaceutical Industry

The pharmaceutical industry is the largest single source of funding for health research in Canada.  In 2002, the pharmaceutical industry invested $1.4 billion in health research and development, or approximately 36% of the total health research in the country.[502]

It is not known just how much funding of research by the pharmaceutical industry in Canada goes into mental illness and addiction.  However, there are at present more than 100 potential pharmaceutical agents for a variety of mental disorders that are either in human clinical testing or awaiting approval.

These investments by the pharmaceutical industry are made both in laboratory research (in-house, in universities and in research institutes) to discover new molecules, and in clinical trials to test the efficacy of new agents on individuals with mental illness and addiction and look for side effects.  Clinical trials in this category of patients raise many ethical issues, and these are discussed in Chapter 16.

As well, pharmaceutical companies support training and research in mental illness and addiction through CIHR’s Industry Partnered Strategic Initiatives.  Examples of recent multi-partnered initiatives involving CIHR and the industry include the Biological Mechanisms and Treatment of Alzheimer Disease Grants Program, the Neurobiology of Psychiatric Disorders and Addictions Program (both with AztraZeneca) and the Vascular Health and Dementia Initiative (with Pfizer).

Pharmaceutical research has had, and continues to have, a major impact on the provision of health care to individuals with mental disorders.  For example, it was noted in Chapter 7 that the discovery of neuroleptic agents in the 1970s made possible the safe deinstitutionalization of many individuals with mental illness.  More recently, new drugs for schizophrenia and depression have contributed to the reduction of treatment costs for these disorders; it has been estimated that these costs fell by more than 15% between 1992 and 1999 largely because new therapeutic drugs reduced the need for hospitalization.[503]

Important research is being pursued by the pharmaceutical industry in Canada.  Agents are presently being tested for a number of conditions such as addiction to illicit drugs (for example, a therapeutic vaccine to treat cocaine addiction), and dependence on alcohol and tobacco.[504]  Research on new agents for depression and for schizophrenia is also expected to improve greatly the prognosis for these conditions.[505]

Currently, the most prominent Canadian pharmaceutical companies in mental illness and addiction are Wyeth, Lilly, Glaxo-Smith-Kline (GSK) and Lundbeck.  Lilly and GSK, with the addition of Pfizer, will continue to play a lead role in mental illness and addiction in Canada, given that these companies have a rich candidate drug pipeline in this area and are likely to invest heavily in future clinical trials.

10.3.2   Provincial Funding Agencies and NGOs

Text Box: There are two key ways for NGOs to support research. First, organizations can financially support research initiatives.  Either through independent fundraising efforts, or by partnering with other organizations, NGOs have the ability to offer significant funds for research. (…)
[Dr. John Gray, President, Schizophrenia Society of Canada, Brief, 12 May 2004, p. 2.]
There are numerous other sources of funding for mental health, mental illness and addiction research.  In most provinces, there are governmental bodies devoted to mental health and addiction research (e.g.: Réseau santé mentale du Québec; Ontario Mental Health Foundation, Alberta Mental Health Board; Manitoba Health Research Council, Centre for Addiction and Mental Health (Toronto), etc.).

There are also many voluntary health charities and foundations (NGOs) that are effective at responding to the needs of different disease groups. As an example, the Committee heard about the excellent working relationship between the Schizophrenia Society of Canada (SSC) and CIHR.  Last year, SSC was able to provide $75,000 in matching funds for research.

 

Text Box: (…) there are not many [volunteer organizations] right now who raise a lot of money from the Canadian public, compared to the National Cancer Institute or the Heart and Stroke Foundation.
[Dr. Rémi Quirion (14:23]
The Committee also heard, however, that rarely are NGOs able to attract the funds required to sponsor research.  Moreover, there are only two national non-profit organizations whose mandate specifically focuses on raising money and funding mental health and addiction research: the Canadian Psychiatric Research Foundation and NeuroScience Canada.  The Canadian Psychiatric Research Foundation (CPRF) told the Committee that the stigma associated with mental illness and addiction creates significant barriers to its attracting appropriate publicity, getting corporate sponsorship, and raising research funding.  This experience differs from other disease groups such as cancer and cardiovascular disease where the respective health charities are strong and successful fundraisers and supporters of research:

CPRF faces a difficult challenge in raising awareness and research funds to determine the causes, treatments and ultimate cures for a variety of mental illnesses.  Tragically, the stigma of mental illness persists and as a result, millions suffer unimaginable despair in silence, fearful of adverse personal consequences that public acknowledgement of their illnesses might bring.  Under these conditions, awareness remains low, understanding minimal, support mechanisms few, misconceptions rife and critical funding for research is critically low.[506]

Nevertheless, voluntary organizations still play an important role in research into mental health, mental illness and addiction in Canada, a role that must be recognized and expanded.  Dr. Quirion told the Committee that when INMHA was created, it sought out and fostered collaboration with 60 volunteer and non-governmental organizations.  These groups participated in drafting the Institute’s strategic plan; they were also involved in developing a strategy for increased funding.[507]

Dr. Gray, from the SSC, also suggested that NGOs need to participate in the process of research.  For example, where appropriate, NGOs can assist in the creation of research questions and their representatives can sit on review panels.  He explained that, by doing so, scientists are better able to identify and conduct research that is most needed by the mental health and addiction sector.  Importantly, their participation would reinforce the human aspects of science and be a continual reminder of the need for the practical application of research outcomes.[508]

A major concern raised with respect to research funding for mental health, mental illness and addiction is that there is currently no central database for all sources of funding.  There is no information held by governments and non-governmental organizations on what is being investigated.  The Canadian Psychiatric Research Foundation pointed out that there is no coordination among research funding bodies and no central responsibility for data collection.  As a result, researchers find it difficult to negotiate their way through not only the government granting agencies, but also the private and the voluntary sector funding sources.  Researchers are frequently not aware of similar research questions under investigation in different labs across the country.  In many cases, the opportunity to collaborate would enhance productivity and work to eradicate the negative impact of competition among universities and hospitals.  The Foundation recommended the establishment of a central database of research funding agencies that would encompass non-government sources of funding, a listing of what and where research is being conducted and a site for maintaining research findings.[509]

10.4      KNOWLEDGE TRANSLATION

In terms of applying research findings to daily life (…) we have to dare to encroach a little on the autonomy of the medical and teaching professions in this field.

[Dr. Laurent Mottron, Professor, Department of Psychiatry, University of Montreal (14:21)]

 

In their paper, Dr. Kapur and Dr. Vaccarino stressed to the Committee that the major impetus for health research in our society is the promise to deliver better outcomes for patients, their families and their communities.[510]  This involves taking discoveries from the bench to the community where care and support is delivered, a process often referred to as “knowledge translation”.

Although knowledge translation is within the CIHR’s mandate, many witnesses testified that it is not done well in mental health and addiction research.  Biomedical research has established that mental illness and addiction are disorders of the brain, providing promising leads into the genetics of mental illness and addiction, and elucidating the role of a wide array of risk-factors. Many new system-level best practices and identified many new opportunities for pharmacological interventions in these disorders have also been identified.  But many believe that all too frequently these discoveries have remained with researchers in their laboratories and have had limited impact on patients and their families.[511]

This state of affairs was highlighted in the 1999 U.S. Surgeon General’s Report entitled Mental Health: A Report of the Surgeon General.  This 500-page publication, the first of its kind on mental health, confirmed that research has provided the knowledge needed to deliver effective treatment and better services for most mental disorders.  The report also stated, however, that gaps exist between what have been shown to be optimally effective treatments and what many individuals receive in actual practice settings.[512]

Similarly, the United States President’s New Commission on Mental Health, chaired by Michael F. Hogan, reported in 2003 on long delay that exist before research reaches practice.  More precisely, the Commission stressed that the 15 to 20 year lag between discovering effective forms of treatment and incorporating them into routine patient care is far too long.  The Commission also reported that, even when these discoveries become routinely applied at the community level, too often actual clinical practices are highly variable and often inconsistent with the original treatment model that was shown to be effective.[513]

The translation of a new idea or discovery into an accepted practice has three distinct phases.  The first is the basic discovery that identifies a new genetic association, a new method of delivering care, a new way of engaging patients in therapy or a new idea for using an established treatment. The second phase is proof-of-principle, which involves translating that discovery into care and demonstrating that it works in a controlled setting, the clinical trial phase.  The third phase, dissemination and application, involves incorporating the new practice into the community and into the pre-existing continuum of care.[514]  Eric Latimer, a health economist at the Douglas Hospital (Montreal), told the Committee that mental illness and addiction research has had many successes at the level of discovery, especially given the level of funding and number of researchers involved, but that the other two phases remain major challenges and will require greater investment.[515]

Clinical trials are necessary to test the efficacy of basic discoveries; their completion requires appropriately trained and experienced clinician scientists.  Some witnesses emphasized that insufficient numbers of physicians are participating in research and that a major deficiency remains the fact that not enough clinician scientists are being trained to carry out crucial clinical trials.  Among the top priorities in INMHA’s strategic plan for 2001-2005 is the creation of more training opportunities for clinician scientists.

The dissemination and application phase of knowledge translation involves bringing validated new ideas or practices into the community.  As stated earlier, one of the strategic priorities for INMHA is to promote linkage and exchange through structured knowledge translation programs between the research community and the municipal, provincial and national levels of decision-makers as well as users of research results, including NGOs. While witnesses agreed that this is not only a laudable but also a necessary goal, they felt that it could not be achieved at the current funding level.  During his testimony, Professor Tousignant suggested that research budgets should contain funds dedicated to “scientific popularization”[516]

The Committee was informed that knowledge translation and clinical research will be two of the top priorities of CIHR over the coming years.  The Committee strongly supports this policy.

 

10.5      TOWARD A NATIONAL RESEARCH AGENDA FOR MENTAL HEALTH, MENTAL ILLNESS AND ADDICTION

Mental health and mental illness are critical and we should have a national type of agenda.

[Dr. Rémi Quirion (14:34)]

The Committee heard that in the field of mental health, mental illness and addiction there is no coherent policy or strategy in place to deal with the complex issues involved and produce a coherent and coordinated response to them.  Mental disorders are generally complex and chronic medical illnesses. Their determinants cut across many sectors, their management involves many different health professionals, and their impact on how society functions is broad.  Witnesses stressed the need for better coordination of the efforts to deal with the many challenges posed by mental illness and addiction currently being undertaken by the federal and provincial governments along with non-governmental organizations and the pharmaceutical industry.  Dr. Kapur and Dr. Vaccarino stated:

(…) the issues of mental illness and addictions defy simple solutions. These illnesses have multiple determinants – biological, psychological and social, and adequate responses to them require coordination of multiple sectors. At present, research in these areas is a well-intentioned but uncoordinated effort. We strongly call for the development of a national policy or guiding framework to form the bases for a coordinated effort in the areas of Mental Health and Addictions Research.[517]

Witnesses who addressed issues related to research in the mental health and addiction field unanimously agreed on the need for a national research agenda.  In their view, such an agenda would build on current Canadian expertise, coordinate the research activities performed by a variety of actors (governments, non-governmental organizations, pharmaceutical corporations) that are now fragmented and ensure a balance between biomedical, clinical, health services and population health research applied to mental health, mental illness and addiction.  Perhaps more importantly, many witnesses stressed that now is the time to address the critical issues in mental health and addiction research.  In particular, Dr. Quirion stated eloquently:

The time is now. There is a great deal of expertise in Canada because of the national health care system. That allows us to collect data and to have data banks that are much more impressive than in the United States. Take the new genome research, for example.

I think we could have a major impact and we should not be afraid to forge ahead. If we forge ahead with the expertise we currently have, we will succeed in finding the causes of brain diseases and of mental illnesses.[518]

10.6      COMMITTEE COMMENTARY

The Committee notes that, during the past several decades, research in the fields of mental health, mental illness and addiction has advanced our understanding of how to improve the conditions of individuals with mental disorders and addiction.  New treatments have made it possible to care for individuals in the community, without the need for long periods of confinement in public institutions.  We are also closer to understanding the pathophysiology of mental disorders, and this knowledge has important implications for both treatment and prevention.  The Committee also believes that research in the fields of mental health, mental illness and addiction can play an important role in informing policy decisions relating to the allocation of resources for treatments, services and supports that are needed by individuals with mental illness and addiction.

The Committee also acknowledges the major contribution made by Canadian researchers in the area of mental illness and addiction.  Canada leads both nationally and internationally in many research fields including neuroscience, psychopharmacology and genetics.  It is critical that this historical strength be preserved and enhanced.

The Committee recognizes the federal government’s role in creating CIHR and the decision to create INMHA.  We also applaud the increase in federal funding allocated to CIHR in recent years.  In particular, we wish to highlight the major contribution of Dr. Rémi Quirion, INMHA’s Scientific Director, in the promotion and conduct of research into mental health, mental illness and addiction.

The Committee is of the opinion that research is of enormous importance, and that it points the way towards a path that can lead to fundamental solutions to the problem of mental illness and addiction in Canada.  However, an adequate level of resources must be allocated to make progress down that path.  We believe the federal government should devote additional funding to mental health and addiction research, including for the education and training of more researchers and clinician scientists in order to expand Canada’s capacity to do first class research in this area.  Similarly, voluntary organizations should be strongly encouraged to develop or strengthen their fundraising activities in order to raise research funds.


CHAPTER 11:
The Question Of Ethics

INTRODUCTION

Text Box: A general research question (…) regards diverse and sometimes opposed understandings of “ethics” or “the good” as it relates concretely to the care of persons trying to cope with a mental illness. Any response to particular ethical challenges entails some commitment to a more general notion of the good.
[Canadian Catholic Bioethics Institute, Brief to the Committee, 20 February 2004, p. 6]
“Ethics” is usually defined as the systematic, reasoned attempt to understand values and principles underlying decisions about matters of fundamental human importance.  Put simply, it is about the right and the good.

In many fields, difficult decisions usually involve consideration of numerous factors, each implicating different – and often conflicting – values, principles, viewpoints, beliefs, expectations, fears, hopes, etc.  When facing such decisions, people may reach different conclusions not only because they consider different factors, but also because they weigh them against each other in different ways.  The practical effect of the discipline of ethics is to help those who face difficult decisions to identify the inherent values and principles that apply, to weigh them against each other, and to come to the best possible decision.[519]

In the context of health and health care – either in practice, delivery or research – the ultimate goal of ethics is to improve the health and quality of life of individuals.  In a paper commissioned by the Committee, Gordon DuVal and Francis Rolleston refer to long-standing and well-established ethical values and principles underlying this goal:

·        beneficence and non-maleficence – to practice in accordance with established standards of quality care and the best interests of the patient, and not to harm him or her;

·        autonomy – to show respect for the patient as an individual and to encourage the patient’s right to self determination, choice, and the protection of sensitive information; and,

·        justice – to ensure that patients and research subjects are treated fairly and resources are allocated based on considerations of equity and fairness.[520]

Other important values mentioned by DuVal and Rolleston include the familiar elements of virtuous behaviour such as compassion, honesty, promise-keeping, moral courage, patience, tolerance, preserving dignity and accountability, as well as community and relational values.[521]  These key ethical dimensions are largely reflected in professional and institutional codes of ethics and the law.  Altogether, these principles and values guide decision-making in the programming and delivery of health services and supports, clinical care and related research.

This chapter examines various ethical issues related more specifically to mental illness and addiction.  Section 11.1 analyzes ethical issues associated with the delivery of services and supports to individuals with mental illness.  Section 11.2 discusses capacity to consent to treatment.  Section 11.3 deals with privacy and confidentiality issues.  Section 11.4 examines ethical issues with respect to specific population groups – children/youth, seniors and forensic patients.  Section 11.5 discusses the ethical implications of advances in genetics and neuroscience.  Section 11.6 reviews ethical concerns raised with respect to mental health and addiction research.  Section 11.7 provides some Committee commentary.

Text Box: I see three major ethical issues around mental health in Canada (…). The first problem in our society remains that of stigma of a mental health problem. (…)
[Mark Miller, Ethicist, St. Paul’s Hospital, Saskatchewan, Letter to the Committee, 27 September 2003.]
At the root of many of the ethical issues and concerns canvassed throughout this chapter lies the social stigma associated with individuals affected by mental illness and addiction and their families.  In itself, stigmatization contributes to a relative lack of compassion and withdrawal of the dignity and respect with which all individuals should be treated.  In the end, stigmatization is at the base of injustice, the absence of beneficence and the inequality of access to needed services and supports.

 

 

11.1       ACCESS TO SERVICES AND SUPPORTS

According to DuVal and Rolleston, the ethical issues that relate to the provision of services and supports arise from the fact that “society has not taken practical steps necessary to ensure justice and beneficence for individuals with mental illness and addiction, both within Canada’s publicly funded health care system and beyond it.”[522]  First, the complexity of mental disorders significantly increases the challenges faced by society in addressing the need for effective services and supports for individuals with mental illness relative to other categories of illness.  Second, proper diagnosis, treatment and the continuing care of mental disorders involve not only many different health care providers, but also, to an extent not found in other illnesses, other professions, such as school teachers, law enforcement officers, clergy, social workers.  Absent a well coordinated health care system, individuals suffering from mental illness and addiction and their families have greater difficulty than most in accessing adequate health care, resulting in a form of systemic discrimination.

In their paper, DuVal and Rolleston argue that the relatively poor treatment of individuals with mental illness and addiction arises not simply because people or systems want to discriminate against them, but because of the factors that derive directly from the nature of mental disorders.  Mental illness and addiction often show themselves through behavioural signs whereas almost all other illnesses present with physical signs.  Behavioural aberrations caused by mental disorders are the basis for the fear and incomprehension that they engender in many individuals.  Such behaviours often result in problems with, for example, law enforcement authorities, or in school, which then, in effect, become the first line of treatment.[523]

Text Box: People with schizophrenia are still treated like people with cancer were treated long ago, as if it were a moral disease instead of a physical one.
[Murray (9:18)]
Although there is no justification for adopting different standards of access, quality of care or priority setting when treating individuals with mental illness and addiction as compared to individuals with physical illness, this does seem to happen.  This is particularly problematic in crisis situations, when timely and effective care is required.  Dr. James Millar, Executive Director, Mental Health and Physician Services, Nova Scotia Department of Health, told the Committee:

 

[We] must also put the same time emphasis on mental health as society does for physical health. It is unacceptable for people with chest pain to wait to determine the cause. If the cause is cardiac, people want immediate attention. Unfortunately, those with emotional pain do not get the same consideration. They will probably wait to seek help, wait further to see a professional caregiver, be treated with outdated and inappropriate methods, and continue to suffer much longer than is necessary.[524]

Carlyn Mackey, Aurise Kondziela and Dorothy Weldon, from the Christ the King Family Support Group, wrote to the Committee that ethical standards that apply to mainstream medicine are not applied consistently to the provision of mental health care:

Ethical standards for the care and treatment of the mentally ill do not appear to be consistent with normal ethical standards of mainstream medicine. One must question the ethics of tolerating dysfunctional mental health systems, or systems which can even be described as non-systems.  It follows that the ethical issues of continuing and knowingly discriminating against the mentally ill in the area of safe and adequate health care provision must be addressed at all levels of government.[525]

An additional challenge in providing services and supports to individuals with mental illness arises because many different professions and areas of expertise are involved.  DuVal and Rolleston offered the example of a school teacher who first brings to a family’s attention the possibility that their child’s difficulties in school may be due to Attention Deficit Hyperactivity Disorder (ADHD).  In cases of disruptive behaviour, the school system will give the priority to the protection of other students.  Actions such as disciplining, suspension or expulsion reinforce stigmatization of the affected child.  Retention in the school system requires special classes or special teaching support to minimize the impact on other students.  If the mental illness leads to violence, law enforcement officers may become involved.  Clergy may be an early recourse for affected individuals who feel themselves possessed by forces outside their control.  Since recognition of mental illness by the sufferer himself or herself is so important to their management of their condition, school teachers, law enforcement officers, clergy and others in parallel professions often find themselves, sometimes inadvertently, thrust into the first line of diagnosis and treatment for individuals with mental illness.[526]

There are, however, multiple barriers based on split jurisdictions between the mental health system and the social services system which inhibit proper treatment of affected individuals.  For example, Dr. Robert Quilty, a registered psychologist working with the Durham County School Board, informed the Committee about the “diagnostic halo” that inhibits the diagnosis and treatment of mental illnesses in children with developmental disorders.  With autism, for example, this “halo” phenomenon often results in failure to recognize a disorder that could have been treated successfully if caught early enough.  This problem is compounded by difficulties in entering children with developmental disability into behavioural service agencies within mental health agencies thus further clouding an already uncertain future.  Children with high functioning autism (Asperger’s Syndrome) may fare somewhat better.  However, even with partially successful treatment, on reaching adulthood, developmentally disabled individuals who need further mental health care often do not receive it because they are labelled as being in need of community support; this is the result of the lack of coordination in service provision between various provincial ministries.[527]

As a consequence, the delivery of mental health services and addiction treatment is highly fragmented, disconnected and uncoordinated.  For individuals with mental illness, the problem of navigating this complex system of services and supports is compounded by the nature of their illness.  Numerous individuals with mental illness and addiction and other experts told the Committee that this lack of cohesion and coordination has led to an increase in addiction, homelessness and incarceration.

DuVal and Rolleston pointed out that the fragmentation of the system is evident even when it is clear that institutional care is required.  A telling recent case in Ottawa, that has received extensive media attention, concerns a young woman with violent and self-destructive behaviour.  The Children’s Hospital of Eastern Ontario could not admit her because they do not have facilities for such patients; the Royal Ottawa Hospital, an adult institution which has the necessary secure facilities, could not take her because she is too young.  This illustrates the serious ethical issues that flow from fragmentation of the “system” that is supposed to provide acute and long term care for patients of different ages and with differing mental conditions.[528]

The Committee was told that it is, above all, the family that usually bears the brunt of caring for an individual with mental illness who has been entrusted to home or community care where resources are, more often than not, inadequate or insufficient to meet their needs.  Mark Miller, Ethicist, St-Paul’s Hospital (Saskatoon), wrote:

And, I would say, the biggest ethical issue beyond the health care system itself is how often resources are lacking for family members caring for loved ones at home or in the community.  Many parents, siblings and other caregivers are mostly abandoned to their own resources, which is grossly unfair and arguably creating more health problems among caregivers than necessary.  Despair is not an uncommon feeling among families with a challenging member.[529]

11.2      CONSENT AND CAPACITY ISSUES

Society preserves individual choice – the right to consent to, or to refuse treatment – based on the individual’s fundamental right of autonomy.  But for consent to mental health services or addiction treatment to be genuine, the individual must be mentally and legally capable of making that choice.

Text Box: In the context of mental illness, decision-making capacity can vary, and be highly dependent on the nature of the decision to be made.  Difficulties relating to decision-making capacity include worries about capacity to manage financial affairs and to make personal care decisions, including decisions about housing.
[DuVal and Rolleston (2004), p. 11.]
While decision-making capacity is essential for valid consent, applicable clinical tests to assess competence are controversial, especially for those with mental illness and addiction.  Decision-making capacity includes in the ability to understand the relevant information concerning treatment, to appreciate the significance of that information, and to reason so as to weigh the available options logically.

Determinations of decision-making capacity raise special issues regarding the vulnerability of those suffering from mental disorders.  Clinical assessments of decision-making capacity focus primarily on cognitive functioning.  Because mental illness and addiction can affect cognition, individuals with such disorders, particularly in severe cases, will often lack decision-making capacity.  They may do so intermittently, however, as in the case of a person suffering from addiction, or gradually, as in the case of a person who is aging, slowly succumbing to dementia or some other degenerative process affecting cognitive function.  Adapting the delivery of services, as the patient fluctuates in, or gradually loses, his/her capacity, is a challenge for the mental health and addiction treatment system.  Respect for the person requires that the changing or diminishing capacity is identified and diagnosed, and that the system adapt accordingly, in order not to infringe unduly on the autonomy of the person affected.

Non-cognitive as well as cognitive functioning can also be influenced by mental disorders in ways that affect decision-making.  For example, clinical depression and other pathological affective states may diminish an individual’s capacity to choose or reject treatment even though an understanding of the relevant information is largely unimpaired.  Accepted conceptions of capacity do not account well for non-cognitive deficits such as the pessimism about the future that may characterize depression.  The test for mental capacity is unclear in the presence of, for example, dominant but potentially transient feelings of hopelessness, worthlessness, or impulsivity.

Similarly, in patients with schizophrenia, the delusional and paranoid nature of the disease may undermine decision-making capacity in ways not clearly related to an absence or loss of cognition.   Individuals suffering from addiction may have compromised decision-making by reason of difficulties in controlling the urge to engage in addictive behaviour.  In some eating disorders, where a pathological body image distortion is experienced, the incapacity may be narrowly focused; the role of such distorted thinking in determining capacity is unclear.

Text Box: Mental health care is compromised when capacity is mistakenly denied or presumed.
[Canadian Catholic Bioethics Institute, Brief to the Committee, 20 February 2004, p. 3.]
Therefore, the clinical assessment of mental capacity in the presence of mental illness and addiction is a complex matter.  Mental capacity to make decisions can exist at different levels and to varying degrees and can fluctuate over time.  Yet, in law, upon expert testimony and at a given point in time the legal capacity to make decisions is decided by a judge.  It is judged either to be present or absent in respect of distinct purposes (the capacity to care for one’s property or to care for one’s person, for example).  There are no degrees of capacity or incapacity.  The process for reviewing a judicial decision to establish protective supervision and to appoint a legal representative with each fluctuation in mental state can be time-consuming and cumbersome.  In its brief to the Committee, the Canadian Catholic Bioethics Institute explained:

The legal system tends to distinguish sharply between those who are deemed “capable” of decision-making regarding their health care and those who are incapable.  Many persons with an active mental illness, such as severe depression or schizophrenia, may not meet the legal criteria for being declared “incapable”, and yet they do have significant impairment of their ability to understand their condition, appreciate their options, make prudent decisions about their mental health care and follow through on these decisions.  Since patient autonomy plays such a central role in contemporary medical ethics, it is helpful to consider the ethical challenges that arise when capacity is denied when in fact some level of capacity is retained, on the one hand, and when capacity is presumed when in fact it is significantly impaired, on the other.[530]

The Committee was told that Ontario and some other provinces have legislated community treatment orders (CTOs).  A CTO is a doctor’s order, obtained with the affected person’s consent, for an individual to receive treatment or care and supervision in the community.  To give consent, the individual must be capable of consenting to treatment under the law.  If found incapable of consenting under the law, and a substitute decision-maker has been authorized, the substitute decision-maker must consent to the CTO, even if the incapable person disagrees.  There is concern among individuals with mental illness and addiction, however, that CTO legislation is too intrusive.  Alternatively, families who in the absence of access to formal caregivers are sometimes the primary caregivers, believe that without such legislation they would at times lack the ability to help a loved one.

Witnesses explained that while family members and health care providers may wish to protect the health and well being of an individual who is vulnerable by reason of diminished capacity, it is still important to respect the individual’s autonomy.  It was suggested that families and health care givers must therefore tread a delicate balance between seeking to help an individual with mental illness/addiction and respect his/her autonomy – even partial autonomy.  The answer is never black and white, but requires a response that seeks to understand the individual and the particularities of his/her condition.

More than with other types of disease, individuals with mental illness and addiction may lack insight into the existence and nature of the illness caused by their disorder.  The result may be a high degree of mistrust of health care providers and high rates of refusal of treatment or of non-compliance.  At what point does respecting a patient’s refusal of treatment become tantamount to abandoning a vulnerable person in clear need of help or care when intervention or treatment is indicated?

There is little doubt that a person with unimpaired decision-making capacity may refuse treatment and that such refusal must be respected.  However, when a person meets the legal standard of capacity – but nevertheless has compromised decision-making abilities – and is in need of care but refuses treatment, the situation for family members may be very difficult.

A related dilemma arises when a patient who is judged to be mentally and legally incapable of decision-making in respect of his or her own person resists the intervention needed to treat a mental disorder.  Although a substitute decision-maker may legally authorize the treatment on behalf of the patient, the practical problem remains how to administer such treatment in the face of what may be stubborn resistance.  The only available options may be to administer the treatment surreptitiously (such as by mixing medicine in food or drink), or employing force, or not at all.

Administering treatment using force or deception, particularly with vulnerable individuals such as those suffering from a mental disorder, raises serious ethical issues for family members and health care professionals.  Force or deception may undermine trust, a vital ingredient in the relationship with the patient/client, making continued communication, cooperation and care even more difficult.  Yet, it may be equally inappropriate not to provide treatment to a patient, who by virtue of incapacity, is vulnerable and in critical need of protection by some trusted person.  Patients may later be grateful for treatment given against their will at a time when they were incapable of making treatment decisions or they may continue to harbour resentment and not seek treatment subsequently if their symptoms recur.

 

11.3      PRIVACY AND CONFIDENTIALITY

In its October 2002 report entitled Recommendations for Reform, the Committee explored the need to protect the privacy of electronic health records and their use in research.  Considerations of privacy are equally and perhaps of greater concern in mental health, mental illness and addiction.

In their paper, DuVal and Rolleston suggest that a central presumption in society’s preservation of privacy is that society as a whole, and each individual within it, benefits from strict preservation of the right of an individual to control the use of his or her personal information.[531]

It is always used in a crisis situation. (…)  The person is considered a danger to self or others. (…) It is not a matter of casually sharing information. There is a purpose to the action, which is to give the person the best possible and the most knowledgeable assistance. That is not sharing information widely.

[Nancy Hall, Mental Health Consultant (16:27-28]

Moreover, the fiduciary relationship between health care provider and patient is built on trust and premised on the fundamental principle of confidentiality, as reflected in most professional codes of ethics.  The testimony that we have heard, however, forces the Committee to ask whether our present legal and policy frameworks on privacy and confidentiality, which generally serve the mentally competent well, can act against the best interests of those who, because of the nature and pervasiveness of mental illness and addiction, become partially or completely dependent on the multiple care providers they encounter along the continuum of care.  Mr. John Arnett, Head of the Department of Clinical Health Psychology, Faculty of Medicine, University of Manitoba, stated:

As a clinician, I cannot go down the hall to ask a colleague of mine, who has seen a patient that I am about to see, what they know that might help me to better evaluate that patient.  The intent of the law is noble, there is no question about that, but it does impose limitations that impact negatively on patient care.  A large part of patient care is having access to knowledge of history and information.  The law creates a significant limitation[532]

Concern arising from strict observation of privacy and confidentiality rules also extends to the family of individuals with mental illness and addiction.  Without the patient’s permission, which those with mental illness/addiction may not be competent to give, a physician cannot share personal information with his or her caregivers, parents, siblings or children.  Murray, whose paranoid schizophrenic son was killed by a bus after escaping from hospital, asked:

Why is it that the medical profession is not allowed to share information with family members when it has been shown that family support is beneficial to the patient?  The patient is on meds because his thinking is affected; yet the medical profession believes that sharing information with a family member must be a decision of the patient, who cannot make a reasonable or thoughtful decision.[533]

Bronwyn Shoush, Board Member, Institute of Aboriginal Peoples’ Health, Canadian Institutes of Health Research, added to this by saying:

I wish to identify one area of law that I think has had a significant, negative impact in the mental health area and stigma in particular.  Privacy legislation is seen, at least in Aboriginal communities and I believe it is true elsewhere, to be a detriment to promoting secrecy concerning health matters. It is seen as not allowing people to discuss matters and feel that they are a normal part of the human condition.  They do not allow people who might be able to offer supports to have a way to do that in a timely way.[534]

These thoughts were echoed by the brief from the Christ the King Family Support Group in Winnipeg which stated that: “confidentiality requirements are cited to justify lack of adequate information to family care-givers regarding the nature and severity of the illness”.  They further wrote that family members are excluded from information about medication, safety issues and the care and treatment plans at the time of discharge; that family concerns are arbitrarily dismissed and not documented in the patient’s files; and that families are not adequately supported in attempting to cope with the devastating consequences of severe and persistent mental illnesses.[535]  It should be noted, however, that in circumstances of clear, serious and imminent danger, a physician may have an overriding duty in law to break his/her patient’s confidence in order to warn third parties and protect public safety.

11.4      SPECIAL POPULATIONS

11.4.1    Children/Adolescents

In previous chapters, the Committee described a number of issues concerning access to mental health services and supports for children and adolescents.  In addition to these, mental health treatment for children and adolescents raises unique ethical challenges relating to vulnerability, decision-making capacity, and the use and disclosure of confidential information.

Mental health professionals must be aware of heightened vulnerability due to age when treating children and adolescents as well as the potential presence of co-occurring mental disorders and any history of social disruption.  The capacity to consent to treatment interventions, and to do so voluntarily, is already compromised by mental illness but is even more difficult for young people.  While parental and other family involvement in treatment can be extremely helpful, those providing care must be aware of the potential for mistrust, dysfunctional relationships, or undue pressure resulting from parental guilt or overprotective attitudes toward the child.  Complex issues of confidentiality may arise when having to determine whether particular circumstances warrant disclosure of patient information to parents and/or relevant governmental or social service agencies.

11.4.2   Seniors

A variety of specific ethical issues are raised in the provision of mental health services to seniors.  For example, many patients in geriatric in-patient units lack decision-making capacity and either have no close family or may be in conflict with family members.  Geriatric patients are sometimes homeless; family members may be difficult to locate, uncooperative, uninvolved or reluctant to play a significant role.  It is estimated that only 10 to 20% of such geriatric patients benefit from any active family participation, and the balance have no involved family members.  Many senior patients “fall through the cracks”, in that general hospitals may be ill equipped to manage individuals with mental illness and psychiatric hospitals may lack the resources to manage the patient’s general medical condition.  Thus, geriatric patients with mental disorders often receive inadequate care.

In psychiatric hospitals, staff may misread pain symptoms, while expressions of pain by elderly patients with mental illness are often not taken seriously in general hospitals.  Inexperience with opiate pain medication and worries about drug interactions with antipsychotic and other psychiatric medications can lead to inadequate management of pain in this population.  Anecdotal evidence indicates that care and pain control may well be inadequate; long waits for attention may be followed by discharge back to the psychiatric hospital where the care may also be inadequate.

 Stigma often makes palliative care difficult for patients and their families to access.  Staff may lack clear direction in caring for psychiatric patients who are at the end of life.  They are often uncertain when to initiate aggressive treatment as opposed to treatment oriented primarily for pain management.  Psychiatric nurses may have minimal experience using morphine and other narcotics and feel uncomfortable using them assertively.

11.4.3   Forensic Patients

In its written submission, the York University Centre for Practical Ethics stated:

Many inmates are in our prisons because of the emotional instability or mental disorder, and once there, are not given appropriate treatment unless they are threatening others or themselves.  Moreover, their condition is likely to deteriorate in such an inappropriate environment.[536]

DuVal and Rolleston identified two types of ethical dilemmas in relation to forensic psychiatry.[537]  First, mental disorders, particularly when untreated, sometimes manifest in behaviour that would otherwise be seen as criminal.  While individuals with mental disorders who are accused of offences may sometime be found unfit to stand trial or not criminally responsible, police and courts often face a choice between referring mentally disturbed individuals for treatment or to the criminal justice system.  Lack of effective training of police and other criminal justice officials may contribute to inappropriate referral of such persons away from mental health resources.  Many believe that our jail and prison system house too many individuals with mental illness and addiction and insist that they, and society at large, would benefit from treatment rather than incarceration.

Text Box: Are we incarcerating people because they are mentally ill rather than people who are fully capable who commit crimes? There are many mentally ill who are incarcerated. When in court, many of these people do not comprehend what is happening to them.
[The Salvation Army, Brief, October 2003, p. 3]
The second issue is that mental health professionals practicing in forensic institutions have a “double agency” problem.  In assessing a person charged with an offence, or in giving ongoing treatment to a person under the Provincial Review Board system, or otherwise giving evidence before administrative bodies or courts, these health care professionals have two distinct and often conflicting sets of obligations.  Their obligations as medical caregivers to their patient are unquestioned duties that include acting in their patient’s best interests, and to do no harm.  But at the same time, they also have the perfectly legitimate obligation to society to offer their candid and objective judgement and advice to courts, Review Boards, and other administrative bodies with respect to the mental status, diagnosis, and prognosis of the persons under their care.  Clearly, any such testimony and advice that places the priority on the benefits to society will not always be in the best interests of their patients/clients.

These conflicting obligations can be difficult to manage and can threaten the clinical relationship in a number of ways.  Most importantly, while giving expert opinion serves a socially valuable role, the quality of care may be compromised because the forensic mental health practitioner is unable to promise the patient confidentiality.  This has clear implications for the trust between the two.  The practitioner may also be obliged to use information gathered in the clinical relationship that can be of detriment to the patient in court or administrative proceedings.

 

11.5      ETHICAL IMPLICATIONS OF ADVANCES IN GENETICS AND NEUROSCIENCE

11.5.1    Genetics and Mental Health

According to DuVal and Rolleston, the stigma associated with mental illness and addiction gives rise to particular worries about the privacy of genetic information and the traumatizing effects that disclosure may have on already vulnerable individuals.  Genetic research and diagnosis relating to behaviours may be particularly threatening.  Research thus far suggests that straightforward linkages between a given gene and specific psychiatric conditions are unlikely to be established.  It seems more likely that genetic components of particular phenotypes will involve complex interactions of genetic and environmental factors.[538]  Still, safeguards must be in place to protect sensitive personal information, particularly that which alone, or when linked with other information, reveals, or may reveal some potential mental disorder or behavioural condition.

DuVal and Rolleston explained that attempting to adequately inform patients, or their surrogates, of genetic test results using the language of susceptibility and risk will raise difficult problems for individuals with mental illness and addiction.  Affected and healthy individuals alike will have to cope with their own vulnerabilities.  Social stigma and privacy risks complicate this burden, particularly since therapeutic benefit may lag behind diagnostic reliability.   The genetic component of mental illness and addiction also raises challenging questions for families and relatives of the patient or research subject, where heritability patterns are often difficult to predict.  The individual’s right not to know must be balanced against the responsibility to inform people of a genetic predisposition.  How this balance is reached will depend in part on the likelihood of the person’s developing the condition concerned, when it might manifest itself, and the chances of their being able to take steps to prevent or reduce the effects of developing a mental illness in the future.[539]

The Committee was also informed of “genetic essentialism”, the view that persons can be defined or characterized solely in terms of their genetic makeup.  This raises special concerns for those with mental illness and addiction.  People with genetic defects may come to feel they are flawed.  Decisions about reproduction may also be affected; for some the availability of pre-natal screening may raise eugenic concerns.  Since the social stigma of mental illness remains strong, worries about discrimination in insurance, employment, education, housing and others may be particularly acute.[540]  Proper management of predictive genetic information is a challenge generally, and it is even more acute when dealing with those with mental illnesses that are already marked by social stigma.

 

11.5.2   Neuroscience and Mental Health

Recent advances in both the technological and theoretical understanding of neuroscience raise difficult ethical problems and challenge traditional notions of free will, responsibility and the self.  Society’s response to these issues will have far-reaching consequences, perhaps as much or more than those related to emerging genetic technologies.

Here we provide just a few of these issues raised by DuVal and Rolleston.  Our evolving understanding of brain function and processes, together with developing imaging technology, will increasingly permit behaviours, personality traits and other mental events to be identified, monitored and correlated with observable changes in the brain.  Employment, education, insurance, legal processes, immigration, counter-terrorism and other social activities and relationships may all be affected by the ability to identify and possibly predict both positive and negative behavioural dispositions to, for example, violence, addiction, dishonesty, stress, sympathy, cooperativeness and other behaviours.[541]

Advances in neuroscience will also make cognitive and behavioural enhancements possible.  DuVal and Rolleston contended that, aside from important questions about the ethics of enhancements involving behaviour, personality and cognitive abilities, there are real concerns for social justice if such enhancement technologies are initially expensive and available only to the wealthy and privileged.  Further, as mental events become increasingly described in terms of brain structures and mechanisms, society may be obliged to re-examine accepted notions of free will, responsibility, and accountability – the so-called neuroscience of ethics.  In the forensic context, for example, if criminal or other aberrant behaviour is found to be causally related to differences in brain structure or function, what would be the basis for appropriate criminal responsibility and punishment?[542]

 

11.6      ETHICS AND MENTAL HEALTH AND ADDICTION RESEARCH

As mentioned in the previous chapter, there has been an acceleration of clinical research into mental illness and addiction in the last two decades that has produced significant advances in treatment.  Much of this important research, however, requires the participation of research subjects who suffer from mental disorders themselves.

In their paper, DuVal and Rolleston stressed that the history of psychiatric research is littered with public and private sector studies that have exploited the vulnerability of individuals with mental disorders, the neurologically impaired and developmentally disabled research subjects.  In one particularly infamous example, the American CIA sponsored clinical trials conducted at the Allan Memorial Institute at McGill University during the 1950s and early 1960s in which psychiatric patients were given hallucinogenic drugs without their knowledge.  The history of the unacceptable treatment of these vulnerable participants has played a pivotal role in the movement toward increased scrutiny and regulation of research involving human subjects; this provides an important context for the consideration of the ethics of research into mental illness and addiction.[543]

Advances in mental health science promise great benefits for those who suffer, or will come to suffer, from mental disorders and, in some cases, for research subjects themselves.  While individuals with mental illness may be particularly vulnerable in a number of ways, research policies and regulations that focus primarily on their vulnerabilities and deficits could encourage and possibly exacerbate the stigmatization already suffered by this population.  But on the other hand, it may be unjust to exclude, by overly restrictive regulation, those individuals with mental disorders who could benefit from their participation in research.[544]

There is a particular need for special precautions in research involving individuals with mental illness and addiction.  While all subjects of clinical research are vulnerable to some degree, the vulnerability of individuals participating in clinical mental illness/addiction research warrants particular attention.  On the other hand, most individuals with mental illness function reasonably well and it may be unnecessary to put too much focus on special regulations for research involving individuals with mental illness.  Nevertheless, it is clear that ethical principles must be applied with care to the particular vulnerabilities of individuals with mental illness.[545]

An ethically appropriate framework for psychiatric research ethics balances rigorous protections for human subjects with recognition of the enormous social and individual benefits that flow from well-designed and ethically conducted scientific research.  Ethical concerns that are particularly germane to mental health research and give rise to the need for special sensitivity and insight, include decision-making capacity and research design issues.

 

11.6.1    Decision-Making Capacity

This subject has been discussed in considerable detail earlier in this chapter.  Decision-making capacity to give valid consent is an essential condition for research involving human subjects.  The vigilance that must be applied when assessing decision-making capacity and determining the appropriate decision-maker in the context of clinical care, must be applied even more vigorously in the context of research where participation in a study may not be for the direct benefit of the patient concerned.  For instance, article 21 of the Civil Code of Quebec requires that, in order for an adult who is incapable of giving consent to participate in research, substitute consent must be obtained not just by a family member (as in the context of necessary care), but by a formally appointed mandatory, tutor or curator.  As a result of this heightened protection, however, incapable adults who do not have legally appointed representatives, cannot participate in research in Québec, apart from rare emergency situations.

 

11.6.2   Research Design Issues

Some study methodologies have drawn particular ethical scrutiny when used in mental health and addiction research, both because of their inherent risks and because the subject population are individuals with mental disorders.  Three types of study design have raised particular ethical concerns.

·        Placebo-Controlled Studies:  The randomized, controlled trial is generally accepted as the “gold standard” experimental design for comparing the efficacy and safety of medications.  Comparison with placebo is regarded by regulators as providing the best evidence for the efficacy and safety of a new medication.  However, the use of a placebo control design has been strongly criticized where there is an existing established effective treatment for the disease being studied; such criticisms have been aimed prominently at research in psychiatry, where research subjects enrolled in the placebo arm of the trial might have to be deprived of their much needed existing treatment, suffer potential negative effects of withdrawal and potentially relapse into a state of mental illness for the duration of the study.

·        Washout Studies: A washout study is one in which researchers discontinue the medication of a subject patient in order to study the patient in an unmedicated state or to initiate another therapy, often an experimental one.  Accordingly, the existing medication is discontinued, usually following a gradual reduction in dosage.  The withdrawal period typically must last long enough that the drug has completely cleared from the patient’s system, so that the residual effects from the withdrawn medication do not confound the study results, or result in unwanted drug interactions.  Depending on the particular study design and the medication involved, the washout can last indefinitely, or until acute symptoms return.

·        Challenge Studies:  A “challenge” study is one in which a psychopharmaceutical agent or psychological challenge is administered to research subjects under controlled conditions to measure or observe behavioural response, a neurobiological response (using brain imaging), or both.  In psychiatry, these designs have proven to be extremely valuable in testing hypotheses and characterizing a variety of neurochemical and pathophysiological processes.  Research of this kind may lead to improved predictions of treatment response and effective new therapies.[546]

In order for placebo-controlled clinical trials to be considered ethically permissible, certain conditions must prevail.  Currently, in Canada, existing regulatory frameworks and national research ethics guidelines differ on what those conditions must be.  One major difference between the existing International Conference on Harmonization’s (ICH) Harmonized Tripartite Guideline for Good Clinical Practice (E-10) and the existing Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans (TCPS) is that TCPS currently allows placebo-controlled trials only if no standard treatment is available to, appropriate for, or wanted by the individual, whereas ICH E-10 allows placebo-controlled trials to take place even if there is established effective treatment, as long as there is no risk of death or permanent ill effect to the individual.  CIHR and Health Canada have undertaken a major initiative in an attempt to review the scientific, ethical and legal principles underlying these documents with a view towards harmonizing both national policies on the appropriate use of placebos in randomized controlled trials.  The Committee highly encourages CIHR and Health Canada to pursue these collaborative efforts and to adopt and implement a harmonized national policy.

In the case of challenge studies, for practical reasons subjects must usually be deceived, or at best only partially informed about the details of the study.  Even without impaired decision-making capacity, this has clear ethical implications for informed consent.

Despite a history that has included serious abuses, mental health and addiction research is vitally important, not least to those who suffer, and those who will come to suffer, from mental disorders.  Clinical psychiatric research gives rise to challenging ethical dilemmas.  The particular vulnerabilities attending mental illness/addiction merit particularly close attention to the design, review and conduct of research.

11.7      COMMITTEE COMMENTARY

As mentioned above, the Committee believes strongly that many of the ethical issues raised with respect to mental illness and addiction originate from the stigma associated with these disorders.  Addressing stigma and discrimination through awareness campaigns designed for both mental health professionals, researchers and the general public would be an important step in responding to these ethical concerns.

The ethical principles underlying the delivery of mental health services and addiction treatment – particularly those of beneficence and justice – must be addressed carefully and in a timely manner.  It is clear that mental health and addiction lag behind other diseases and conditions covered under Canada’s health care system.  They are technologically less advanced and critically more fragmented, and the development of evidence-based guidelines to inform best practices has not reached the level of other specialties.  For these reasons, the Committee believes very strongly that the prevention and treatment of mental illness and addiction should be coordinated across the wide spectrum of potential services both within and outside health care, and should be given priority in decisions about the  allocation of scarce resources.

The Committee acknowledges that decision-making capacity may be impaired by mental illness and addiction, and also that not all mental disorders impair decision-making capacity.  Furthermore, decision-making capacity of those suffering from mental illness and addiction may be impaired to varying degrees and at different times.  Given the structure of existing laws that draw rather rigid conclusions about the presence or absence of decision-making capacity, and the relative inflexibility of changing or adapting protective supervision regimes, there should be a more fulsome debate about how to give meaningful effect to a person’s partial and/or fluctuating capacity to make decisions for himself or herself.  An appropriate balance must be struck between the respect owed to the right to individual autonomy and the need to protect vulnerable persons when their decision-making capacity is impaired by reason of mental illness or addiction.

With respect to privacy and confidentiality issues, the Committee is well aware that any erosion of privacy and confidentiality protections can have serious negative consequences on an individual’s trust in his or her caregivers.  However, as noted above, witnesses have told us that rigid adherence to privacy and confidentiality rules in certain circumstances can work against the interests of individuals whose mental health is compromised.  The unique challenges they describe must be recognized when developing, interpreting and applying privacy and confidentiality rules, so as to allow health care providers and family caregivers to provide patients with the much needed support they sometimes require.

As stated in Chapter 10, the Committee strongly supports research into mental illness and addiction; it is the foundation for future advances in treatment and prevention.  Research involving human participants must be designed and performed in accordance with the highest scientific and ethical standards and must protect the dignity of individuals and their families who make this valuable contribution to scientific progress.

The Committee acknowledges that individuals suffering from mental illness and addiction are particularly vulnerable as research subjects.  It is therefore of paramount importance to protect the rights and well-being of those research participants, while promoting ethically responsible research.  Research advances should not be pursued, however, at the expense of human rights and human dignity.  But nor should protections be so stringent so as to exacerbate existing social stigma associated with mental illness and addiction and potentially exclude this vulnerable population from vitally important research that can improve scientific knowledge about their condition and even benefit them as individuals.

It is clear that interdisciplinary research is needed to address adequately many of the challenging ethical, legal and socio-cultural issues arising from mental illness and addiction.  The Committee was told of the need to conduct this kind of research in a comprehensive and fundamental manner.  In a letter to the Committee, Dr. Julio Arboleda-Florez, Professor and Head, Department of Psychiatry, Queen’s University, suggested that there is a pressing need for further research into mental health ethics and research ethics to address effectively issues such as those discussed above:

There is not much applied ethical research in Canada or elsewhere and no oganizational or financial capacity. (…) Applied research in the sense of testing the social take and realities of ethical concepts, their transcultural reach and implications in terms of transcultural dissonances, their population acceptability, their social meaning, their ease of implementation, or even their usefulness, is sorely missing so the field is becoming a theoretical morass.[547]

We believe that Canada could play an important leadership role in this regard, both nationally and internationally.

Finally, the Committee agrees with experts that the acute and complex ethical concerns that arise in the context of neuroscience and genetic research must be addressed carefully so as to understand better the underlying values and principles associated with these and other evolving and rapidly advancing technologies in modern medicine.



CONCLUSION

This report is the first comprehensive document on mental health, mental illness and addiction in Canada.  It brings together, for the first time, historical analysis of the development of mental health and addiction services, a description of their current state and an assessment of how they are being delivered.  It also provides the basis for a greater understanding of the mental health needs of Canadians, by describing the problems and challenges faced by individuals with mental illness and addiction.

This report was based on the testimony of many experts as well as on a review of relevant literature.  This report is intended to serve as a useful reference document to anyone who wishes to participate in the Spring, 2005 phase of the Committee’s study on mental health, mental illness and addiction.

During this next phase, the Committee will hold extensive public hearings across the country to hear the views of Canadians on how to reform and restructure the delivery of mental health services and addiction treatment.  We hope that the Committee’s report which will result from these hearings, and which will be released in November 2005, will serve as a catalyst for an informed debate on mental health, mental illness and addiction.



APPENDIX A:
list of witnesses
third session of the 37th parliament

(February 2, 2004 – May 23, 2004)

Organization

Name

Date Of Appearance

Issue No.

Alzheimer Society of Canada

Steve Rudin, Executive Director

June 4, 2003

17

As individuals

Thomas Stephens, Consultant

March 20, 2003

11

Nancy Hall, Mental Health Consultant

May 28, 2003

16

J. Michael Grass, Past Chair, Champlain District Mental Health Implementation Task Force

June 5, 2003

17

Loїse

David

Murray

Ronald

February 26, 2003

9

Canadian Academy of Psychiatric Epidemiology

Dr. Alain Lesage, Past President

March 19, 2003

11

Canadian Academy of Psychiatry and the Law

Dr. Dominique Bourget, President

June 5, 2003

17

Canadian Coalition for Senior Mental Health

Dr. David K. Conn, Co-Chair; President, Canadian Academy of Geriatric Psychiatry

June 4, 2003

17

Canadian Institute for Health Information

Dr. John S. Millar, Vice-President, Research and Analysis

March 20, 2003

11

Carolyn Pullen, Consultant

March 20, 2003

11

John Roch, Chief Privacy Officer and Manager, Privacy Secretariat

March 20, 2003

11

Canadian Institutes of Health Research

Bronwyn Shoush, Board Member, Institute of Aboriginal Peoples’ Health

May 28, 2003

16

Canadian Institutes of Health Research

Jean-Yves Savoie, President, Advisory Board, Institute of Population and Public Health

June 12, 2003

18

Dr. Rémi Quirion, Scientific Director, Institute of Neurosciences, Mental Health and Addiction

May 6, 2003

14

Canadian Mental Health Association – Ontario Division

Patti Bregman, Director of Programs

June 12, 2003

18

Canadian Paediatric Society

Dr. Diane Sacks, President-Elect

May 1, 2003

13

Marie-Adèle Davis, Executive Director

May 1, 2003

13

Centre for Addiction and Mental Health

Jennifer Chambers, Empowerment Council Coordinator

May 14, 2003

15

Rena Scheffer, Director, Public Education and Information Services

May 28, 2003

16

Centre hospitalier Mère-enfant Sainte-Justine

Dr. Joanne Renaud, Child and Adolescent Psychiatrist; Young Investigator, Canadian Institutes of Health Research

April 30, 2003

13

Children’s Hospital of Eastern Ontario

Dr. Simon Davidson, Chairman, Division of Child and Adolescent Psychiatry

May 1, 2003

13

CN Centre for Occupational Health and Safety

Kevin Kelloway, Director

June 12, 2003

18

Douglas Hospital

Eric Latimer, Health Economist

May 6, 2003

14

Dr. James Farquhar, Psychiatrist

May 6, 2003

14

Dr. Mimi Israёl, Head, Department of Psychiatry ; Associate Professor, McGill University

May 6, 2003

14

Douglas Hospital

Myra Piat, Researcher

May 6, 2003

14

Ampara Garcia, Clinical Administrative Chief, Adult Ultraspecialized Services Division

May 6, 2003

14

Manon Desjardins, Clinical Administration Chief, Adult Sectorized  Services Division

May 6, 2003

14

Jacques Hendlisz, Director General

May 6, 2003

14

Robyne Kershaw-Bellmare, Director of Nursing Services

May 6, 2003

14

Global Business and Economic, Roundtable and Addiction and Mental Health

Rod Phillips, President and Chief Executive Officer, Warren Sheppell Consultants

June 12, 2003

18

Hamilton Health Sciences Centre

Venera Bruto, Psychologist

June 4, 2003

17

Health Canada

Tom Lips, Senior Advisor, mental Health, Healthy Communities Division, Population and Public Health Branch

March 19, 2003

11

Pam Assad, Associate Director, Division of Childhood and Adolescence, Centre for Healthy Human Development, Population and Public Health Branch

April 30, 2003

13

Laval University

Dr. Michel Maziade, Head, Department of Psychiatry, Faculty of Medecine

May 6, 2003

14

Louis-H. Lafontaine Hospital

Jean-Jacques Leclerc, Director, Rehabilitation Services and Community Living

May 6, 2003

14

Dr. Pierre Lalonde, Director, Clinique jeunes adultes

May 6, 2003

14

McGill University

Dr. Howard Steiger, Professor, Psychiatry Department; Director, Eating Disorders Program, Douglas Hospital

May 1, 2003

13

Province of British Columbia

Patrick Storey, Chair, Minister’s Advisory Council on Mental Health

May 14, 2003

15

Heather Stuart, Associate Professor, Community Health and Epidemiology

May 14, 2003

15

Queen’s University

Dr. Julio Arboleda-Florèz, Professor and head, Department of Psychiatry

March 20, 2003

11

Registered Psychiatric Nurses of Canada

Margaret Synyshyn, President

May 29, 2003

16

Statistics Canada

Lorna Bailie, Assistant Director, Health Statistics Division

March 20, 2003

11

St.Joseph’s Health Care London

Maggie Gibson, Psychologist

June 4, 2003

17

St. Michaels Hospital

Dr. Paul Links, Arthur Sommer Rothenberg Chair in Suicide Studies

March 19, 2003

11

Université du Québec à Montréal

Henri Dorvil, Professor, School of Social Work

May 6, 2003

14

Dr. Michel Tousignant, Professor, Centre de recherche et intervention sur le suicide et l’euthanasie

May 6, 2003

14

University of British Columbia

Dr. Charlotte Waddell, Assistant Professor, Mental Health Evaluation and Community Consultation Unit, Department of Psychiatry, Faculty of Medecine

May 1, 2003

13

University of Calgary

Dr. Donald Addington, Professor and Head, Department of Psychiatry

May 29, 2003

16

University of Manitoba

John Arnett, Head, Department of Clinical Health Psychology, Faculty of Medicine

May 28, 2003

16

Robert McIlwraith, Professor and Director, Rural and Northern Psychology Program

May 29, 2003

16

University of Montreal

Laurent Mottron, Researcher, Department of Psychiatry, Faculty of Medicine

May 6, 2003

14

Dr. Richard Tremblay, Canada Research Chair in Child Development, Professor of Pediatrics, Psychiatry and Psychology, Director, Centre of Excellence for Early Childhood Development

May 6, 2003

14

Dr. Jean Wilkins, Professor and Paediatrics, Faculty of  Medecine

May 6, 2003

14

Dr. Renée Roy, Assistant Clinical Professor, Department of Psychiatry, Faculty of Medecine

May 6, 2003

14

University of Ottawa

Tim D. Aubry, Associate Professor; Co-Director, Centre for Research and Community Services

June 5, 2003

17

Dr. Jeffrey Turnbull, Chairman, Department of Medicine, Faculty of Medicine

June 5, 2003

17

University of Toronto

Dr. Joe Beitchman, Professor and Head, Division of Child Psychiatry, Department of Psychiatry; Psychiatrist-in-Chief, Hospital for Sick Children

April 30, 2003

13

Dr. David Marsh, Clinical Director, Addiction Medicine, Centre for Addiction and Mental Health

May 29, 2003

16



APPENDIX B:
List of witnesses
Second Session of the 37th Parliament

(September 30, 2002 – November 12, 2003)

Organization

Name

Date Of Appearance

Issue No.

Alberta Mental Health Board

Ray Block, Chief Executive Officer

April 28, 2004

7

Alberta Mental Health Board

Sandra Harrison, Executive Director, Panning, Advocacy & Liaison

April 28, 2004

7

Anxiety Disorders Association of Canada

Peter McLean, Vice-President

May 12, 2004

9

As individuals

Charles Bosdet

April 29, 2004

7

Pat Caponi

Don Chapman

Australia, Government of

(by videoconference)

Dermot Casey, Assistant Secretary, Health Priorities and Suicide Prevention Branch, Department of Health and Ageing

April 20, 2004

6

Jenny Hefford, Assistant Secretary, Drug Strategy Branch, Department of Health and Ageing

British Columbia Ministry of Health Services

Irene Clarkson, Executive Director, Mental Health and Addictions

April 28, 2004

7

Canadian Association of Social Workers

Stephen Arbuckle, Member, Health Interest Group

March 31, 2004

5

Canadian Medical Association

Dr. Sunil Patel, President

March 31, 2004

5

Dr. Gail Beck, Acting Associate Secretary General

Canadian Mental Health Association

Penny Marrett, Chief Executive Officer

May 12, 2004

9


Organization

Name

Date Of Appearance

Issue No.

Canadian Nurses Association, the Canadian Federation of Mental Health Nurses and the Registered Psychiatric Nurses of Canada

Nancy Panagabko, President, Canadian Federation of Mental Health Nurses

March 31, 2004

5

Annette Osted, Board member,  Registered Psychiatric Nurses Of Canada

March 31, 2004

5

Canadian Psychiatric Association

Dr. Blake Woodside, Chairman of the Board

March 31, 2004

5

Canadian Psychological Association

John Service, Executive Director

March 31, 2004

5

Centre for Addiction and Mental Health

Christine Bois, Provincial Priority Manager for Concurrent Disorders

May 5, 2004

8

Wayne Skinner, Clinical Director, Concurrent Disorder Program

Brian Rush, Research Scientist, Social Prevention and Health Policy

Centre for Suicide Prevention

Diane Yackel, Executive Director

April 21, 2004

6

Cognos

Marilyn Smith-Grant, Senior Human Resources Specialist

April 1, 2004

5

Correctional Service of Canada

Larry Motiuk, Director General, Research

April 29, 2004

7

Françoise Bouchard, Director General, Health Services

April 29, 2004

7

Douglas Hospital

Dr. Gustavo Turecki, Director, McGill Group for Suicide Studies, McGill University

April 21, 2004

6

House of Commons

The Honourable Jacques Saada, P.C., M.P., Leader of the Government in the House of Commons and Minister responsible for Democratic Reforms

April 1, 2004

5

Human Resources and Skills Development Canada

Bill Cameron, Director General, National Secretariat on Homelessness

April 29, 2004

7

Human Resources and Skills Development Canada

Marie-Chantal Girard, Strategic Research Manager, National

April 29, 2004

7

Institute of Neurosciences, Mental Health and Addiction

Richard Brière, Assistant Director

April 21, 2004

6

McGill University

(by videoconference)

Dr. Laurence Kirmayer, Director, Division of Social and Transcultural Psychiatry, Department of Psychiatry

May 13, 2004

9

Mood Disorder Society of Canada

Phil Upshall, President

May 12, 2004

9

Native Mental Health Association of Canada

Brenda M. Restoule, Psychologist and Ontario Board Representative

May 13, 2004

9

New Zealand, Government of

(by videoconference)

Janice Wilson, Deputy Director General, Mental Health Directorate, Ministry of Health

May 5, 2004

8

David Chaplow, Director and Chief Advisor of Mental Health

Arawhetu Peretini, Manager of Maori Mental Health

Phillipa Gaines, Manager of Systems Development of Mental Health

Nova Scotia Department of Health

Dr. James Millar, Executive Director, Mental Health and Physician Services

April 28, 2004

7

Ontario Federation of Community Mental Health and Addiction

David Kelly, Executive Director

May 5, 2004

8

Ontario Hospital Association

Dr. Paul Garfinkel, Chair, Mental Health Working Group

March 31, 2004

5

Privy Council Office

Privy Council Office

Ginette Bougie, Director, Compensation and Classification

April 1, 2004

5

Public Service Alliance of Canada

John Gordon, National Executive Vice-President

April 1, 2004

5

James Infantino, Pensions and Disability Insurance Officer

Schizophrenia Society of Canada

John Gray, President-Elect

May 12, 2004

9

Simon Fraser University

(by videoconference)

Margaret Jackson, Director, Institute for Studies in Criminal Justice Policy

April 29, 2004

7

Six Nations Mental Health Services

Dr. Cornelia Wieman, Psychiatrist

May 13, 2004

9

Treasury Board Secretariat

Joan Arnold, Director, Pensions Legislation Development, Pensions Division

April 1, 2004

5

U.S. Campaign for Mental Health Reform

William Emmet, Coordinator

April 1, 2004

5

U.S. President’s New Freedom Commission on Mental Health

(by videoconference)

Michael Hogan, Chair

April 1, 2004

5

United Kingdom, Government of

(by videoconference)

Anne Richardson, Head of the Mental Health Policy Branch, Department of Health

May 6, 2004

8

Adrian Sieff, Head of the Mental Health Legislation Branch



APPENDIX C:
List of IndividualS who responded to a letter FROM THE cOMMITTEE ON PRIORITIES FOR ACTION

Canadian Research Group

CancerCare Manitoba

Harvey Max Chochinov, MD, PhD, FRCPC, Canada Research Chair in Palliative Care, Director, Manitoba Palliative Care Research Unit, CancerCare Manitoba, Professor, Department of Psychiatry, Community Health Sciences and Family Medicine(Division of Palliative Care) University of Manitoba

Carleton University

Dr. Hymie Anisman, Canadian Research Chair in Neuroscience, Ontario Mental Health Foundation Senior Research Fellow

Douglas Hospital Reseach Centre

Ashok Malla, MD, FRCP Canada Research Chair in Early Psychosis, Professor of Psychiatry, McGill University, Director, Clinical Research Division

McGill University Health Centre

Eric Fombonne, MD, FRCPsych, Canada Research Chair in Child Psychiatry, Professor of Psychiatry, University McGill, Director, Montreal Children’s Hospital

University of Alberta

Glen B. Baker, PhD, DSc, Professor and Chair, Canada Research Chair in Neurochemistry and Drug Development

University of Manitoba – Faculty of Medecine

Brian J. Cox, Ph.D., C. Psych., Canada Research Chair in Mood and Anxiety Disorders, Associate Professor of Psychiatry, Adjunct Professor, Departments of Community Health Sciences and Psychology


DEANS OF MEDICAL SCHOOLS

Kingston General Hospital

Samuel K. Ludwin, M.B.B., Ch., F.R.C.P.C., Vice-President, (Research Development)

McGill University Health Centre

Joel Paris, M.D., Professor and Chair, Department of Psychiatry

University of Alberta

Dr. L. Beauchamp, Dean, Faculty of Eduction

University of Sherbrooke

Pierre Labossière, P. Eng., Ph.D., Associate Vice-Rector, Research

University of Western Ontario

Dr. Carol P. Herbert, Dean of Medicine and Dentistry

ILLNESS RELATED GROUP

Canada’s Research-Based Pharmaceutical Companies

Murray J. Elston, President

Eli Lilly Canada Inc.

Terry McCool, Vice-President, Corporate Affairs

GlaxoSmith Kline

Geoffrey Mitchinson, Vice-President of Public Affairs

Merck Frosst Canada

André Marcheterre, President

NSERC

Thomas A. Brzustowski, President

Ontario Mental Health Foundation

Howard Cappell, Ph.,D. (C.Psych) Executive Director

Roche Pharmaceuticals

Ronnie Miller, President & C.E.O.

Schizophrenia Society of Canada

Fred Dawe, President

MENTAL HEALTH ETHICS GROUP

Centre for Addiction and Mental Health

Paul E. Garfinkel, MD, FRCPC, President and CEO

McGill University – Douglas Hospital Research Centre

Maurice Dongier, Professor of Psychiatry

Parkwood Hospital, St.Joseph’s Health Care London

Maggie Gibson, Ph. D., Psychologist, Veterans Care Program

Queen’s University

J. Arboleda-Florèz, Professor and Head, Department of Psychiatry

Salvation Army – Territorial Headquarters Canada and Bermuda

Glen Shepherd, Colonel, Chief Secretary

St-Paul’s Hospital

Mark Miller, C.S.s.R., Ph.D. Ethicist

University of Alberta

Wendy Austin, RN, Ph. D., Canada Research Chair, Relational Ethics in Health Care, Faculty of Nursing and John Dosseter Health Ethics Centre

University of Alberta, Faculty of Nursing

Genevieve Gray, Dean and Professor, Faculty of Nursing

University of British Columbia

Peter D. McLean, Ph.D. Professor and Director, Anxiety Disorders Unit

University of Western Ontario

Nancy Fedyk, Executive Assistant to the Dean

Winnipeg Regional Health Authority

Linda Hughes, Chair, WRHA Mental Health Ethics Committee

York University

David Shugarman, Director

PRESIDENT OF UNIVERSITY

Institute of Mental Health Research – University of Ottawa

Zul Merali, Ph. D., President and CEO

McGill University

Heather Munroe-Blum, Professor of Epidemiology and Biostatistics

University of Lethbridge

Lynn Basford, Dean, Health Sciences


GOVERNMENT RESPONSIBILITY

Canadian Coalition for Seniors

J. Kenneth Le Clair, MD, FRCPC, Co-Chair, Canadian Coalition for Seniors Mental Health, Professor and Chair, Geriatric Division, Department of Psychiatry, Queen’s University, Clinical Director, Specialty Geriatric Psychiatry Program

Canadian Coalition for Seniors Mental Health

David K. Conn, MB., FRCPC, Co-Chair Canadian Coalition for Seniors Mental Health, Psychiatrist-in-Chief, Department of Psychiatry, Baycrest Centre for Geriatric Care, Associate Professor, Department of Psychiatry, University of Toronto, President, Canadian Academy of Geriatric Psychiatry

Canadian Institute of Health Research

Dr. Jeff Reading, PhD, Scientific Director – Institute of Aboriginal Peoples’s Health

Canadian Mental Health Association

Bonnie Pape, Director of Programs & Research, Canadian Mental Health Association – National Office

Dalhousie University – Department of Psychology

Patrick J. McGrath, OC, PhD, FRSC, Co-ordinator of Clinical Psychology, Killam Professor of Psychology, Professor of Pediatrics and Psychiatry, Canada Research Chair, Psychologist IWK Health Centre

Dalhousie University, Faculty of Medicine

David Zitner, D. Ph., Director, Medical Informatics

Department of Health and Wellness New-Brunswick

Ken Ross, Assistant deputy Minister

Douglas Hospital Research Centre

Michel Perreault, Ph. D., Researcher, Douglas Hospital, Professor, Department of Psychiatry McGill University

Douglas Hospital Research Centre -

Institute of Neurosciences, Mental Health and Addiction

Rémi Quirion, Scientific Director, (INMHA)

Faculty of Medicine – University of Ottawa

Jacques Bradwejn, MD FRCPC, DABPN, Chair of the Department of Psychiatry, Psychiatris-in-Chief, Royal Ottawa Hospital, Head of Psychiatrist, The Ottawa Hospital

Family Council: Empowering Families in Addictions and Mental Health

Betty Miller, Coordinator, The Family Council

Global Business and Economic Roundtable on Addiction and Mental Health – Affiliated with the Centre for Addiction and Mental Health

Bill Wilkerson, Co-Founder and Chief Executive Officer

Human Resources Development Canada

Deborah Tunis, Director General, Office for Disability Issues

McGill University Health Centre

Juan C. Negrete, MD, FRCP(C) Professor of Psychiatry, McGill University, Chair, Addictions Section, Canadian Psychiatric Association

McMaster University

Dr. Richard P. Swinson, MD, FRCPC, Morgan Firestone Chair in Psychiatry, Psychiatry & Behavioural Neurosciences, McMaster University, Chief, Department of Psychiatry, St.Joseph’s Healthcare

NAHO National Aboriginal Health Organization

Judith G. Bartlett, M.D. CCFP, Chairperson

Ottawa Hospital

Paul Roy, MD, FRCPC, Assistant Professor of Psychiatry, University of Ottawa, Director, Ottawa First Episode Psychosis Program

Royal Ottawa Hospital

J. Paul Fedoroff, M.D., Associate Professor of Psychiatry, University of Ottawa, Research Director, Forensic Unit, Institute of Mental Health Research

Six Nations Mental Health Services

Cornelia Wieman, M.D., FRCPC, Psychiatrist

Syncrude

Eric P. Newell, Chairman & Chief Executive Officer

University of British Columbia – Mental Health Evaluation & Community Consultation Unit, Department of Psychiatry

Elliot Goldner, MD, MHSc, FRCPC, Head, Division of Mental Health Policy & Services

University of Ottawa – Office of the Vice-President, Research

Yvonne Lefebvre, Ph.D., Associate Vice-President, Research

University of Ottawa- School of Psychology

John Hunsley, Ph.D., C. Psych., Professor of Psychology

University of Toronto – Sunnybrook & Women’s College Health Sciences Centre

Nathan Herrmann, M.D., F.R.C.P. (C)



[484]   The first three paragraphs of this section are based on information contained on CIHR’s website, under “About CIHR – Who We Are” (http://www.cihr-irsc.gc.ca/e/about/7263.shtml#?).

[485]   Institute of Neurosciences, Mental Health and Addiction, Strategic Plan – 2001-2005, December 2001.

[486]   Shitij Kapur and Franco Vaccarino, Translating Discoveries into Care – Enhancing Research in Mental Illness and Addictions, paper commissioned by the Committee, 2004, p. 5.

[487]   Dr. Alan Bernstein, Letter to the Committee, dated 8 July 2003.

[488]   Dr. Rémi Quirion (14:9).

[489]   Kapur and Vaccarino (2004), p. 5.

[490]   Health Systems Research Unit, Clark Institute of Psychiatry, Best Practices in Mental Health Reform – Discussion Paper, prepared for the Federal/Provincial/Territorial Advisory Network on Mental Health, Health Canada, 1997, pp. 27-28.

[491]   Professor Michel Tousignant (14:43).

[492]   Dr. Bernstein (8 July 2003).

[493] Information obtained from personal communication.

[494] Information obtained from the Website at: www.nserc.gc.ca.

[495] Dr. Kapur and Dr. Vaccarino (2004), p. 3.

[496]   Autism Society Canada, Canadian Autism Research Agenda and Canadian Autism Strategy: A White Paper, March 2004.

[497]   Dr. Bernstein (8 July 2003).

[498]   Information obtained from the NIH Website at: www.gov.nih.

[499] Information obtained from the MRC Website at: www.mrc.ac.uk.

[500] Alan Bernstein (8 July 2003).

[501] Ibid.

[502]   Statistics Canada, “Estimates of Total Spending on Research and Development in the Health Field in Canada, 1988 to 2002”, Science Statistics, Service Bulletin, Catalogue 88-001-XIB, Vol. 27, No. 6, September 2003.

[503]   See Pharmaceutical Research and Manufacturers of America (PhRMA), “New Medicines for Mental Health Help Avert a Spending Crisis”, Value in Medicines, 14 January 2004.

[504]   See the Website of Canada’s Research Based Pharmaceutical Companies (Rx&D) at: http://www.canadapharma.org/Patient_Pathways/Health_Info/02mentalheal/index_e.html.

[505]   Ibid.

[506] Canadian Psychiatric Research Foundation, Brief to the Committee, June 2003, p. 2.

[507] Dr. Rémi Quirion (14:24).

[508] Dr. John Gray, President, Schizophrenia Society of Canada, Brief to the Committee, 12 May 2004, p. 3.

[509] Canadian Psychiatric Research Foundation (June 2003), p. 6.

[510]   Dr. Kapur and Dr. Vaccarino (2004), p. 6.

[511]   Ibid.

[512]   United States Surgeon General, Mental Health: A Report of the Surgeon General, 1999.

[513]   The President’s New Freedom Commission on Mental Health, Achieving the Promise: Transforming Mental Health Care in America, Final Report, 22 July 2003, p. 67.

[514]   Dr. Kapur and Dr. Vaccarino (2004), p. 6.

[515] Eric Latimer (14:44 to 14:48).

[516] Professor Tousignant (14:43).

[517] Kapur and Vaccarino (2004), pp. 11-12.

[518] Dr. Rémi Quirion (14:15).

[519]   Senate Standing Committee on Social Affairs, Science and Technology, Recommendations for Reform, Volume Six, October 2002, p. 222.

[520]   Gordon DuVal and Francis Rolleston, Ethics Issues in Mental Health, document commissioned by the Committee, 20 April 2004.

[521] Ibid.

[522] Ibid., p. 3.

[523]   Ibid.

[524]   Dr. James Millar, Executive Director, Mental Health and Physician Services, Nova Scotia Department of Health, (7:).

[525]   Carlyn Mackey, Aurise Kondziela and Dorothy Weldon (Christ the King Family Support Group - Winnipeg), Brief to the Committee, 24 October 2003, p. 2.

[526] Gordon DuVal and Francis Rolleston (2004), p. 6.

[527] Ibid., p. 10.

[528] Ibid., p. 5.

[529] Mark Miller, Brief to the Committee, 27 September 2003, p. 2.

[530] Canadian Catholic Bioethics Institute, Brief to the Committee, 20 February 2004, p. 5.

[531] Gordon DuVal and Francis Rolleston (2004), p. 15.

[532] John Arnett (16:26).

[533]   Murray (9:18).

[534]   Bronwyn Shoush (16:12).

[535]   Carlyn Mackey, Aurise Kondziela and Dorothy Weldon (Christ the King Family Support Group - Winnipeg), Brief to the Committee, 24 October 2003.

[536] Centre for Practical Ethics, York University, Brief to the Committee, 2004.

[537] Gordon DuVal and Francis Rolleston (2004), pp. 17-18.

[538] Ibid., p. 18.

[539] Ibid.

[540] Ibid.

[541] Ibid., p. 19.

[542] Ibid.

[543] Gordon DuVal and Francis Rolleston (2004), pp. 19-20.

[544] Ibid., p. 20.

[545] Ibid.

[546] Ibid., pp. 20-21.

[547] Dr. Julio Arboleda-Florez, Brief to the Committee, 5 November 2003.


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