Notes for an address by Dr. Eugene Bereza, Chair, Committee on Ethics, Canadian Medical Association : Bill C-13 - An act respecting assisted human reproduction : Presentation to the House of Commons Standing Committee on Health
BILL C-13 - AN ACT RESPECTING ASSISTED HUMAN REPRODUCTION
Presentation to the House of Commons Standing Committee on Health
November 20, 2002
BILL C-13 - AN ACT RESPECTING ASSISTED HUMAN REPRODUCTION
Madame Chair and Members of the Committee:
My name is Dr. Eugene Bereza. I am a physician and clinical ethicist at the Royal Victoria Hospital in Montreal and Chair of the Canadian Medical Association Committee on Ethics. I am here today representing our members, more than 54,000 physicians from across Canada. I also wish to speak as a advocate for our patients, especially those affected by infertility and those who are or will suffer from diseases for which medical science is searching for cures.
I am accompanied today by Dr. John Williams, our Director of Ethics.
You will recall that we appeared before this Committee on October 23, 2001 in company with representatives from eight other national health provider and scientific organizations to present our views on draft legislation on assisted human reproduction. Although we were pleased that your December 2001 report recommended the establishment of an assisted reproduction regulatory body outside the Department of Health, we were disappointed that you did not find favour with other recommendations we put forward.
The government responded to your report with Bill C-56, now Bill C-13. It is this bill that we are here to address today. Although there are many details in the bill on which we would like either clarification or changes, we intend to focus our remarks on the issue that we consider of greatest importance for our patient’s wellfare and the practice of medicine. That issue is the use of the criminal power to deal with medical and scientific activities.
The Standing Committee Report and Bill C-13
In your December 2001 report, you acknowledged our position on this issue: “Some witnesses recommended the elimination of the prohibited activities category altogether. Citing the benefits of regulatory flexibility, they felt that all activities should come under the controlled activity category, including the more reprehensible activities like reproductive cloning for which licences, arguably, would never be allowed under the regulations” (page 9). However, you rejected this view on the grounds that “a licence-related prohibition of this sort would not carry the same weight or degree of social censure as the statutory prohibition…. An outright statutory ban signals more clearly that certain activities are either unsafe or socially unacceptable.
The use of the statutory ban also signals that these activities are of such concern to Canadians that their status as a prohibited activity may not be altered except with the approval of Parliament” (page 9).
Bill C-13 reflects your views on this matter. We recognize your good faith in proposing and defending this position but we are convinced that its potential for harm outweighs its potential benefits. And so we are pleased to have this opportunity to reiterate the reason why the CMA believes that Bill C-13 will adversely affect the patient-physician relationship and the advance of medical science.
Need to Change Bill C-13
As you know, our position on this matter is supported by legal scholars such as Patrick Healy, McGill University Faculty of Law, Tim Caulfield, Director of the University of Alberta Health Law Institute, and Bartha Knoppers, Université de Montréal Centre de Recherche en Droit Publique. In essence, our position is that the criminal law is a blunt instrument and very difficult to change and is therefore appropriate for activities whose status is unlikely to change over time, such as murder and theft, rather than medical and scientific activities that are constantly developing. The latter are better left to a representative regulatory body to determine if and when changes in health and safety considerations and public attitudes and values might justify allowing certain formerly prohibited activities to take place under specific conditions.
Bill C-13 begins with the statement: “This enactment prohibits assisted reproduction procedures that are considered to be ethically unacceptable.” This echoes the conclusions in your report. However, as the transcripts of your hearings demonstrate, many Canadians, especially those who are infertile, do not consider some or all of these procedures to be ethically unacceptable. As a matter of public policy, should Canadians who hold this view be denied access to medical treatment for infertility because others consider such treatments to be ethically unacceptable? Should patients who suffer from conditions for which research that is forbidden in Bill C-13 might lead to a cure be denied that opportunity? We question whether criminal prohibitions are appropriate for dealing with activities on which there is considerable ethical disagreement among Canadians.
In Canada legislators have been justifiably reluctant to use the criminal law to deal with medical and scientific issues such as abortion, withdrawal of life-sustaining treatment and the conduct of medical research. Why is an exception being made for assisted reproduction? What sort of precedent will this set for other controversial bioethical issues?
We are also concerned about the bill’s penalties for infractions: jail terms up to 10 years and fines up to $500,000. These are disproportionate to the penalties for crimes that injure persons or property and, as such, will create a climate of undue fear and excessive caution for physicians and scientists working in this area, such that they will avoid any activity that is potentially covered by the bill, even to the detriment of patient care. Given the rapid advance of science and medical practice and the difficulty of anticipating new developments, it will be difficult to adjust the law to deal with new applications of prohibited activities that may be ethically acceptable.
An Alternate Solution
The CMA has stated repeatedly that we are not opposed to the prohibition of certain assisted human reproduction activities. Instead of instituting criminal prohibitions within the legislation, we remain convinced that an independent body on an ongoing basis should determine the activities that are permissible or prohibited on the basis of up-to-date scientific research, public input and ethical review. This can be accomplished very easily in Bill C-13 by moving the procedures listed under “Prohibited Activities” (sections 5-9) to “Controlled Activities” and adding the words “except in accordance with the regulations and a licence” to each of the provisions in sections 5-9.
Consistent with this recommendation we consider that the regulatory agency should be established as soon as possible and be given as much authority as possible over the matters that Bill C-13, section 65, reserves to regulations of Governor in Council. We hope that the agency will build upon the experience and expertise of existing organizations and structures in the field of assisted reproduction that deal with practice standards, education, certification and accreditation.
To summarize, we strongly support government efforts to regulate assisted human reproduction and related activities, including the prohibition of certain practices either temporarily or permanently. However, like others who have appeared before this Committee, we do not believe that criminalizing the medical and scientific activities named in the bill is an appropriate way to achieve those objectives. We consider that the objectives could be as well achieved by far less drastic means than criminalization and, moreover, that criminalization would create major obstacles to legitimate medical and scientific progress in the treatment of infertility. We recommend that the proposed agency be empowered to regulate these practices and that the criminal power be invoked when controlled activities are performed without authority of a licence from the agency or in defiance of the licensing conditions established by the agency.
Thank you, Madame Chair and members of the Committee. We will be pleased to respond to your questions.
Dear Members of the Federal External Panel:
On behalf of the Canadian Medical Association (CMA), I appreciate the opportunity to provide input toward the Federal External Panel's national consultation to support the federal government's legislative response following the Supreme Court of Canada's ruling in Carter v. Canada.
As the national professional association representing Canada's physicians, the CMA has played an important role in leading the public dialogue on end-of-life care, including assisted dying. In 2014, the CMA led a national consultation on end-of-life care which included a series of public and member town hall consultations across the country. This national dialogue focused on three main issues: advance care planning, palliative care, and physician-assisted dying. As highlighted in the summary report (enclosed as Appendix 1), the Canadian public emphasized the need for strict protocols and safeguards if the law on physician-assisted dying were to change.
This initial consultation provided valuable insights to inform the concurrent CMA's in-depth and comprehensive consultation with its membership as well as medical and health stakeholders as an intervener before the Supreme Court and following the Carter decision. This consultation included engagement of the CMA's Ethics Committee, policy debates as part of the CMA's Annual Meetings in 2014 and 2015, in-person member forums across the country, and an online dialogue. The consultation was critical to the development of the CMA's Principles-based Recommendations for a Canadian Approach to Assisted Dying (enclosed as Appendix 2).
These recommendations, guided by a set of ten foundational principles, address patient eligibility for access to and assessment for assisted dying, procedural safeguards for eligibility criteria, the roles and responsibilities of the attending and consulting physicians, and the issue of conscientious objection. Taken together, these recommendations form the CMA's position on the forthcoming legislative and regulatory framework to govern assisted dying in Canada.
In addition to our recommendations, we would like to highlight key points that are of particular relevance to physicians:
NATIONAL, PAN-CANADIAN LEGISLATIVE AND REGULATORY FRAMEWORK
The CMA strongly recommends the establishment of national and coordinated legislative and regulatory processes and systems in response to the Carter decision.
The CMA is deeply concerned that in the absence of federal action to support the establishment of national guidelines for assisted dying, a patchwork of differing and potentially conflicting approaches could emerge across jurisdictions. Legislative action at the federal level is needed to provide further clarity for physicians and their patients and support the promulgation of a coordinated and consistent approach across all jurisdictions in Canada. The CMA has been working with the medical regulatory colleges at the national level to mitigate this risk through the development of the CMA's Principles-based Recommendations for a Canadian Approach to Assisted Dying which has encouraged similar efforts by the regulatory colleges. In addition to these initiatives, federal action is required.
As the Federal External Panel is aware, the Carter decision emphasizes that any regulatory or legislative response must seek to reconcile the Charter rights of patients (wanting to access assisted dying) and physicians (who choose not to participate in assisted dying on grounds of conscientious objection). The notion of conscientious objection is not monolithic. While some conceptions of conscience encompass referral, others view referral as being connected to, or as akin to participating in, a morally objectionable act.
It is the CMA's position that an effective reconciliation is one that respects, and takes account of, differences in conscience, while facilitating access on the principle of equity. To this end, the CMA's
membership strongly endorses the recommendation on conscientious objection as set out in section 5.2 of the CMA's enclosed Principles-based Recommendations for a Canadian Approach to Assisted Dying.
The CMA recognizes, and supports addressing, the need to develop education materials for physicians. To this end, the CMA is actively developing education modules for physicians following an environmental scan of existing courses and discussions with other jurisdictions (e.g., the Royal Dutch Medical Association). The CMA has the support of the Royal College of Physicians and Surgeons of Canada, the College of Family Physicians of Canada, and the Canadian Medical Protective Association to lead this initiative.
Finally, as previously stated, the CMA strongly encourages the federal government to make the report of the Federal External Panel publicly available once final. The CMA urges the members of the Federal External Panel to support this recommendation to the federal government.
Thank you once again for the opportunity to provide input. The CMA looks forward to our meeting with the Federal External Panel on October 20, 2015.
Cindy Forbes, MD, CCFP, FCFP
Jeff Blackmer MD, MHSc, FRCPC
Vice-President, Medical Professionalism
Appendix 1 - Summary Report: End-of-Life Care A National Dialogue (please see pdf for link to document)
Appendix 2 - CMA's Principles-based Recommendations for a Canadian Approach to Assisted Dying
Principles-based Recommendations for a Canadian Approach to Assisted Dying
On Feb. 6, 2015, the Supreme Court of Canada unanimously struck down the law prohibiting assisted dying. The court suspended that decision for 12 months. This has provided an opportunity for the Canadian Medical Association (CMA) to build on its past work and pursue further consultation with provincial and territorial medical associations, medical and non-medical stakeholders, members, legislatures and patients for processes, whether legal, regulatory or guidelines, that respect patients' needs and reflects physicians' perspectives.
The goal of this process is twofold: (a) discussion and recommendations on a suite of ethical-legal principles and (b) input on specific issues that are particularly physician-sensitive and are worded ambiguously or not addressed in the Court's decision. The touch points are reasonable accommodation for all perspectives and patient-centeredness.
For purposes of clarity, CMA recommends national and coordinated legislative and regulatory processes and systems. There should be no undue delay in the development of these laws and regulations. The principles are not designed to serve as a tool for legislative compliance in a particular jurisdiction or provide a standard of care. Rather, the CMA wishes to provide physicians with guidance and a vision of what physicians might strive for to further their professional and legal obligations in a complex area.
The CMA recommends adopting the following principles-based approach to assisted dying in Canada:
The following foundational principles underpin CMA's recommended approach to assisted dying. Proposing foundational principles is a starting point for ethical reflection, and their application requires further reflection and interpretation when conflicts arise.
1. Respect for patient autonomy: Competent adults are free to make decisions about their bodily integrity. Specific criteria are warranted given the finality of assisted dying.
2. Equity: To the extent possible, all those who meet the criteria for assisted dying should have access to this intervention. Physicians will work with relevant parties to support increased resources and access to high quality palliative care, and assisted dying. There should be no undue delay to accessing assisted dying, either from a clinical, system or facility perspective. To that end, the CMA calls for the creation of a separate central information, counseling, and referral service.
3. Respect for physician values: Physicians can follow their conscience when deciding whether or not to provide assisted dying without discrimination. This must not result in undue delay for the patient to access these services. No one should be compelled to provide assistance in dying.
4. Consent and capacity: All the requirements for informed consent must clearly be met, including the requirement that the patient be capable of making that decision, with particular attention to the context of potential vulnerabilities and sensitivities in end of life circumstances. Consent is seen as an evolving process requiring physicians to continuously communicate with the patient.
5. Clarity: All Canadians must be clear on the requirements for qualification for assisted dying. There should be no "grey areas" in any legislation or regulations.
6. Dignity: All patients, their family members or significant others should be treated with dignity and respect at all times, including throughout the entire process of care at the end of life.
7. Protection of patients: Laws and regulations, through a carefully designed and monitored system of safeguards, should aim to minimize harm to all patients and should also address issues of vulnerability and potential coercion.
8. Accountability: An oversight body and reporting mechanism should be identified and established in order to ensure that all processes are followed. Physicians participating in assisted dying must ensure that they have appropriate technical competencies as well as the ability to assess decisional capacity, or the ability to consult with a colleague to assess capacity in more complex situations.
9. Solidarity: Patients should be supported and not abandoned by physicians and health care providers, sensitive to issues of culture and background, throughout the dying process regardless of the decisions they make with respect to assisted dying.
10. Mutual respect: There should be mutual respect between the patient making the request and the physician who must decide whether or not to perform assisted dying. A request for assisted dying is only possible in a meaningful physician-patient relationship where both participants recognize the gravity of such a request.
Based on these principles, the Supreme Court decision in Carter v. Canada (2015)1 and a review of other jurisdictions' experiences, CMA makes the following recommendations for potential statutory and regulatory frameworks with respect to assisted dying. We note that this document is not intended to address all potential issues with respect to assisted dying, and some of these will need to be captured in subsequent regulations.
1. Patient eligibility for access to assisted dying
1.1 The patient must be a competent adult who meets the criteria set out by the Supreme Court of Canada decision in Carter v. Canada (2015.
1.2 Informed decision
* The attending physician must disclose to the patient information regarding their health status, diagnosis, prognosis, the certainty of death upon taking the lethal medication, and alternatives, including comfort care, palliative and hospice care, and pain and symptom control.
* The attending physician must be satisfied that:
- the patient is mentally capable of making an informed decision at the time of the request(s)
- the patient is capable of giving consent to assisted dying, paying particular attention to the potential vulnerability of the patient in these circumstances
- communications include exploring the priorities, values and fears of the patient, providing information related to the patient's diagnosis and prognosis, treatment options including palliative care and other possible interventions and answering the patient's questions
* If either or both the attending physician or the consulting physician determines that the patient is incapable, the patient must be referred for further capacity assessment.
* Only patients on their own behalf can make the request while competent.
* The attending physician must be satisfied, on reasonable grounds, that all of the following conditions are fulfilled:
- The patient's decision to undergo assisted dying has been made freely, without coercion or undue influence from family members, health care providers or others.
- The patient has a clear and settled intention to end his/her own life after due consideration.
- The patient has requested assisted dying him/herself, thoughtfully and repeatedly, in a free and informed manner.
2. Patient eligibility for assessment for decision-making in assisted dying
Stage 1: Requesting assisted dying
1. The patient submits at least two oral requests for assisted dying to the attending physician over a period of time that is proportionate to the patient's expected prognosis (i.e., terminal vs non-terminal illness). CMA supports the view that a standard waiting period is not appropriate for all requests.
2. CMA recommends generally waiting a minimum of 14 days between the first and the second oral requests for assisted dying.
3. The patient then submits a written request for assisted dying to the attending physician. The written request must be completed via a special declaration form that is developed by the government/department of health/regional health authority/health care facility.
4. Ongoing analysis of the patient's condition and ongoing assessment of requests should be conducted for longer waiting periods.
Stage 2: Before undertaking assisted dying
5. The attending physician must wait no longer than 48 hours, or as soon as is practicable, after the written request is received.
6. The attending physician must then assess the patient for capacity and voluntariness or refer the patient for a specialized capacity assessment in more complex situations.
7. The attending physician must inform the patient of his/her right to rescind the request at any time.
8. A second, independent, consulting physician must then also assess the patient for capacity and voluntariness.
9. Both physicians must agree that the patient meets eligibility criteria for assisted dying to proceed.
10. The attending physician must fulfill the documentation and reporting requirements.
Stage 3: After undertaking assisted dying
11. The attending physician, or a physician delegated by the attending physician, must take care of the patient until the patient's death.
3. Role of the physician
3.1 The attending physician must be trained to provide assisted dying.
3.2 Patient assessment
* The attending physician must determine if the patient qualifies for assisted dying under the parameters stated above in Section 1.
* The attending physician must ensure that all reasonable treatment options have been considered to treat physical and psychological suffering according to the patient's need, which may include, independently or in combination, palliative care, psychiatric assessment, pain specialists, gerontologists, spiritual care, and/or addiction counseling.
3.3 Consultation requirements
* The attending physician must consult a second physician, independent of both the patient and the attending physician, before the patient is considered eligible to undergo assisted dying.
* The consulting physician must
- Be qualified by specialty or experience to render a diagnosis and prognosis of the patient's illness and to assess their capacity as noted in Stage 2 above.
3.4 Opportunity to rescind request
* The attending physician must offer the patient an opportunity to rescind the request at any time; the offer and the patient's response must be documented.
3.5 Documentation requirements
* The attending physician must document the following in the patient's medical record:
- All oral and written requests by a patient for assisted dying
- The attending physician's diagnosis and prognosis, and their determination that the patient is capable, acting voluntarily and has made an informed decision
- The consulting physician's diagnosis and prognosis, and verification that the patient is capable, acting voluntarily and has made an informed decision
- A report of the outcome and determinations made during counseling
- The attending physician's offer to the patient to rescind the request for assisted dying
- A note by the attending physician indicating that all requirements have been met and indicating the steps taken to carry out the request
3.6 Oversight body and reporting requirements
* There should be a formal oversight body and reporting mechanism that collects data from the attending physician.
* Following the provision of assisted dying, the attending physician must submit all of the following items to the oversight body:
- Attending physician report
- Consulting physician report
- Medical record documentation
- Patient's written request for assisted dying
* The oversight body would review the documentation for compliance
* Provincial and territorial jurisdictions should ensure that legislation and/or regulations are in place to support investigations related to assisted dying by existing provincial and territorial systems
* Pan-Canadian guidelines should be developed in order to provide clarity on how to classify the cause on the death certificate
4. Responsibilities of the consulting physician
* The consulting physician must verify the patient's qualifications including capacity and voluntariness.
* The consulting physician must document the patient's diagnosis, prognosis, capacity, volition and the provision of information sufficient for an informed decision. The consulting physician must review the patient's medical records, and should document this review.
5. Moral opposition to assisted dying
5.1 Moral opposition by a health care facility or health authority
* Hospitals and health authorities that oppose assisted dying may not prohibit physicians from providing these services in other locations. There should be no discrimination against physicians who decide to provide assisted dying.
5.2 Conscientious objection by a physician
* Physicians are not obligated to fulfill requests for assisted dying. There should be no discrimination against a physician who chooses not to participate in assisted dying. In order to reconcile physicians' conscientious objection with a patient's request for access to assisted dying, physicians are expected to provide the patient with complete information on all options available to them, including assisted dying, and advise the patient on how they can access any separate central information, counseling, and referral service.
1 Carter v. Canada (Attorney General),  1 SCR 331, 2015 SCC 5 (CanLII)
The CMA is pleased to have this opportunity to address the Canadian Panel on Violence Against Women. As a professional organization with a leadership role in societal issues affecting health, it is both appropriate and important for the CMA to be actively involved in addressing the problems associated with violence. The extremely high incidence of abuse, the associated severe physical, mental and psychological health problems and the significant role played by physicians in recognizing and caring for victims make this a priority for organized medicine.
The CMA has significant experience and expertise in this field. In 1984, the CMA General Council passed a resolution stating:
"That Health and Welfare Canada and the Provincial Ministries of Health and Education
alert the Canadian public to the existence of family violence, including wife assault, child
abuse, and elder abuse, and to the services available which respond to these problems,
and that organized medicine (through such vehicles as professional journals, newsletters,
conferences and formal medical education) alert the physicians of Canada to the problem
and that all physicians learn to recognize the signs of family violence in their daily contact
with patients and undertake the care and management of victims using available
community resources." (Resolution #84-47)
The CMA calls the Panel's attention to four major areas of concern: Recognition and Treatment, Education and Training, Protocol Development and Research.
1. Recognition and Treatment:
Recognition includes acknowledging the existence and prevalence of abuse and identifying
victims of violence. Violence against women is clearly a health issue and one that should be given a very high priority. Statistics indicate that nearly one in eight Canadian women will be subject to spousal violence in her lifetime and that one in five will be a victim of sexual assault. Violence against women is a major determinant of both short -and long-term health problems including traumatic injury, physical and psychological illnesses, alcohol/drug addiction and death. Furthermore, although it is critically important to recognize that abuse crosses all racial and socio-economic boundaries, there are strong indications that certain groups are particularly vulnerable to abusive acts (e.g., pregnant, disabled and elderly women).
Recognition includes acknowledging and understanding the social context within which violence occurs. Violence is not an isolated phenomenon, but is part of the much broader issue of societal abuse of women.
Physicians are often the first point of contact for patients who have been abused physically, sexually, mentally and/or psychologically. They have a vital role to play in identifying victims and providing treatment and supportive intervention including appropriate referral. Abuse is not always readily apparent, however, and may go undetected for extended periods of time. Numerous studies have shown that both physicians and patients often fail to identify abuse as an underlying cause of symptoms. Such delays can result in devastating and sometimes fatal consequences for patients. Even in those cases where abuse is apparent, both physicians and patients often feel uncomfortable talking openly about the abuse and the circumstances surrounding it. It is the physician's role and responsibility to create a safe and supportive environment for the disclosure and discussion of abuse.
Furthermore, the lack of resources for support services or the lack of awareness of what services are available to provide immediate and follow-up care to patients in need may discourage physicians from acknowledging the existence of abuse and identifying victims. It is clear that improvement in the ability and the degree to which victims of abuse are recognized and given appropriate assistance by physicians and other caring professionals in a non-threatening environment is urgently required.
Individuals who are abused usually approach the health care system through primary contact with emergency departments or other primary care centres. The care available in such settings is acute, fragmented and episodic. Such settings are not appropriate for the victims of violence.
The challenge that we, as physicians, recognize is to be able to provide access in a coordinated way to medical, social, legal and other support services that are essential for the victim of violence. This integration of services is essential at the point of initial recognition and contact. The CMA has been involved with eight other organizations in the Interdisciplinary Project on Domestic Violence (IPVD), the primary goal of which is to promote interdisciplinary co-operation in the recognition and management of domestic violence.
2. Education and Training: The spectrum of abuse is complex; the victims are diverse; expertise in the field is developing. The current system of medical education neither provides health care personnel with the knowledge or skills nor does it foster the attitude to deal adequately with this issue. Some of CMA's divisions have played an active role in this area. For instance, the Ontario Medical Association has developed curriculum guidelines and medical management of wife abuse for undergraduate medical students. It is ,important that there be more involvement by relevant medical groups in developing educational and training programs and more commitment from medical educators to integrate these programs and resources into the curriculum.
Programs must be developed and instituted at all levels of medical education in order that physicians can gain the requisite knowledge and skills and be sensitive to the diversity of victims of violence.
The CMA believes that the educational programs must result in: 1) understanding of the health consequences of violence; 2) development of effective communication skills; and, 3) understanding of the social context in which violence occurs.
Understanding of the social context in which violence occurs will require an examination of the values and attitudes that persist in our society, including a close consideration of the concepts of gender role socialization, sexuality and power. This is required in order to dispel the pervasive societal misconceptions held by physicians and others which act as barriers to an effective and supportive medical response to patients suffering the effects of violence.
3. Development of Protocols: The CMA recognizes the need for more effective management and treatment of the spectrum of problems associated with violence against women. Health care facilities, professional organizations and other relevant groups are challenged to formulate educational and policy protocols for integrated and collaborative approaches to dealing with prevention of abuse and the management of victims of violence.
The CMA and a number of its divisions have been active in this area:
In 1985, the CMA prepared and published Family Violence: Guidelines for Recognition and Management (Ghent, W.R., Da Sylva, N.P., Farren, M.E.), which dealt with the signs and symptoms, assessment and management, referral assistance and medical records with respect to wife battering, child abuse and abuse of the elderly;
The Ontario Medical Association published Repons on Wife Assault in January 1991. This document, endorsed by the CMA, examines the problem of wife assault from a medical perspective and outlines approaches to treatment of the male batterer and his family;
The Medical Society of Nova Scotia has developed a handbook entitled Wife Abuse: A Handbook for Physicians, advising on the identification and management of cases involving the battering of women;
The New Brunswick Medical Society has produced a series of discussion papers on violence and in conjunction with that province's Advisory Council on the Status of Women, has produced a graphic poster depicting physical assault on pregnant women as a way of urging physicians to be alert for signs of violence against women;
The Medical Society of Prince Edward Island has worked cooperatively with the provincial Department of Health and Social Services and the Interministerial Committee on Family Violence to produce a document entitled Domestic Violence: A Handbook for
The CMA encourages continued involvement by the medical profession in the development of initiatives such as these and welcomes the opportunity to work in collaboration with other professionals involved in this area.
4. Research The CMA has identified violence against women as a priority health issue. Like rriany other areas in women's health, there is a need for research focusing on all aspects of violence and the associated problems. More specifically, the CMA maintains that there should be more research on the incidence of abuse (particularly as it relates to particular groups), on ways to facilitate the disclosure by victims of abuse and on the effectiveness of educational and prevention programs.
The CMA recognizes that the medical profession must show a greater commitment to ending abuse of women and providing more appropriate care and support services to those who are victims of violence. The CMA possesses unique skills and expertise in this area and welcomes the opportunity to work with the Panel on this challenging social and health problem.
Review of the Personal Information Protection and Electronic Documents Act (PIPEDA) : CMA's Presentation to the House of Commons Standing Committee on Access to Information, Privacy and Ethics - December 13, 2006
The Canadian Medical Association (CMA) is pleased to be here today to participate in your review of the Personal Information Protection and Electronic Documents Act, or PIPEDA.
The CMA has had a long-standing interest in privacy-related matters, including enhancing measures to protect and promote the privacy of health information. We welcome the opportunity to share our policies and thoughts on these vital matters.
As a pediatric oncologist from Winnipeg and Chair of the CMA's Committee on Ethics, I come here today with one bottom line: Physicians have always- and continue to - take their patients' privacy very seriously. This is the cornerstone of the special bond between patients and their doctor and has been thus since the time of Hippocrates. In recognition of the importance of privacy, the CMA has produced such documents as the CMA Code of Ethics and the CMA Health Information Privacy Code to guide our more than 64,000 members across the country. These documents existed before the federal government introduced PIPEDA.
It is out of our concern for protecting and ensuring the privacy of medical information that we speak to you today.
There are three specific areas which we would like to raise:
1) Recognition in law of the unique nature of health care;
2) Physician information as "work product"; and
3) Emerging Privacy and Health information issues.
1. Recognition in law of the unique nature of health care
I would like to highlight the importance of recognizing in law the special circumstances of protecting health information. In fact, when PIPEDA was first being debated, CMA posed questions about the scope of the Act and was told that the legislation, originally designed for commerce and the private sector, would not capture health information. We were also told that even if it did, PIPEDA wouldn't change how we practiced medicine.
The passing of PIPEDA generated enough concern and uncertainty that government agreed to delay its application to health for 3 years. For example, PIPEDA failed to clarify the issue of implied consent for the sharing of patient information between health professionals providing care.
For example, when the family physicians says to a patient "I'm going to send you to see an oncologist to run some tests" and the patient agrees and follows that course of action, then clearly there is "consent" to the sharing of their health information with others. As an oncologist I assume there is consent to send the test results to other specialists that I may need to consult in order to advance the patient's care in a timely fashion. This, however, needed to be addressed before PIPEDA was applied to health care.
The delayed application allowed the federal government and health care community to work together and develop a set of guidelines for how PIPEDA would be applied. The resulting PIPEDA Awareness Raising Tools, known as PARTs, contain a series of questions and answers that make up guidelines for health care providers. They answered many of our concerns, provided necessary definitions and allowed for the implied consent model to continue to be used within the circle of care. The CMA applauds the government for this collaborative effort and the resulting guidelines have been used by health care providers ever since.
However, we remain concerned that the PARTs guidelines have no legal status. This limitation creates a degree of uncertainty that the CMA would like this legislative review to see addressed by ensuring the PARTs series of questions and answers are referenced in PIPEDA.
In addition to participating in the PARTS initiative, since PIPEDA's implementation, the CMA has designed practical tools for physicians and patients:
* adopted the CMA policy Principles Concerning Physician Information to address the importance of protecting the privacy of physician information;
* produced Privacy in Practice: a handbook for Canadian physicians to help physicians maintain best practices in the protection of patient health information; and
* created the PRIVACYWIZARD(tm) designed to help physicians record their current privacy practices, communicate these to patients and identify possible areas for enhancement.
2. Physician Practice Information as "Work Product"
I referred earlier to CMA's Policy document on physician information. The CMA strongly believes that physicians have legitimate privacy concerns about the use by third parties of information - such as prescribing and other practice data for commercial purposes. Currently deemed "work product" this information can be collected, used and disclosed without consent.
We feel PIPEDA inadequately protects this information. We recognize that it is information generated out of the patient-physician relationship. We disagreed with findings of the previous Privacy Commissioner that physician prescribing information is not subject to PIPEDA's privacy protection provisions for "personal information". The CMA has consistently advocated that physician prescribing data and other practice information is personal information and appeared as an intervener in a Federal Court review of this issue that was ultimately settled by the main parties.
Also, insufficient regard for the privacy of prescribing and other physician data could have a negative impact on the sanctity of the physician-patient relationship. Patients confide highly sensitive information to physicians with the expectation this information will be kept in the strictest confidence. This expectation exists because they know that physicians are under ethical and regulatory dictates to safeguard their information and that physicians take this responsibilities very seriously. The perceived and indeed actual loss of control by physicians over information created in the patient encounter, such as prescribing data, could undermine the confidence and faith of our patients that we are able to safeguard their health information. This concern is not hypothetical.
For physicians, so called "work product" information also encompasses practice patterns such as discharge rates, referral rates, billing patterns, hospital length of stays, complaints, peer review results, mortality and re-admittance rates. With the advent of electronic medical records and growth in pay-for-performance and outcome-based incentive programs for physicians, there is an enormous potential for the resulting physician "performance" data or "work product" to be "mined" by other parties and used to influence performance review (traditionally the purview of the medical licensing authorities) as well as decisions around treatment funding and system planning.
The lack of transparency in the sale and compilation of physicians' prescribing and other performance data means that physicians might find themselves to be the unwitting subject and targets of marketing research. We believe practice decisions must be made in the best interest of patients and not the bottom-line interests of businesses and marketers.
CMA therefore recommends a legislative change to include physician information as personal information under PIPEDA. Legislation in Quebec provides an example that is consistent with CMA's approach since it requires regulatory oversight and gives individuals the right to opt out of the collection, use and disclosure of "professional" information.
3. Emerging Privacy and Health information issues
With budgetary and demographic pressures, our health care system is under strain and physicians are striving to deliver timely, quality care to patients, often with competing and multiple demands. Physicians are therefore seeking assurances from law makers that any amendments to PIPEDA will take into account the potential impact on them and their patients. Therefore, we seek assurances that:
* health care is recognized as unique when it comes to the disclosure of personal information before the transfer of a business (one physician transferring his/her practice to another) because it is regulated at the provincial level through the appropriate licensing body. As a general rule, physicians must give notice to the public, whether via a newspaper ad or a notice in the office about the change in practice.
* the federal government will consider the impact of the trans-border flow of personal information on telehealth and Electronic Health Record activities. Communications between patients and physicians via electronic means are likely to increase and to move across geographic boundaries with increasing frequency; and
* the federal government will study the issue of international cross border data flows, particularly among Canadian researchers who receive funding from US drug companies. These arrangements should be governed by Canadian law (PIPEDA) not American (HIPAA or the US Patriot Act).
In closing, the privacy protection of personal health information is a responsibility that my colleagues and I do not take lightly. It is a key pillar of our relationship with Canadians, they not only expect it-they deserve it. I look forward to taking questions from Committee members.
Canadian Medical Association Ottawa, December 13, 2006