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Palliative care

https://policybase.cma.ca/en/permalink/policy11809
Last Reviewed
2020-02-29
Date
2015-10-03
Topics
Ethics and medical professionalism
  1 document  
Policy Type
Policy document
Last Reviewed
2020-02-29
Date
2015-10-03
Topics
Ethics and medical professionalism
Text
Palliative care is an approach that aims to relieve suffering and improve the quality of life of those facing life-limiting acute or chronic conditions by means of early identification, assessment, treatment of pain and other symptoms and support of all physical, emotional and spiritual needs. It may coexist with other goals of care, such as prevention, treatment and management of chronic conditions, or it may be the sole focus of care. General principles Goals 1. All Canadian residents should have access to comprehensive, quality palliative care services regardless of age, care setting, diagnosis, ethnicity, language and financial status.1 2. The Canadian Medical Association (CMA) declares that its members should adhere to the principles of palliative care whereby relief of suffering and quality of living are valued equally to other goals of medicine. 3. The CMA believes that all health care professionals should have access to referral for palliative care services and expertise.2 4. The CMA supports the integration of the palliative care approach into the management of life-limiting acute and chronic disease.3 5. The CMA advocates for the integration of accessible, quality palliative care services into acute, community and chronic care service delivery models4 that align with patient and family needs. 6. The CMA supports the implementation of a shared care model, emphasizing collaboration and open communication among physicians and other health care professionals.5 7. The CMA recognizes that the practice of assisted dying as defined by the Supreme Court of Canada is distinct from the practice of palliative care. Access to palliative care services 8. The CMA believes that every person nearing the end of life who wishes to receive palliative care services at home should have access to them. 9. Comprehensive, quality palliative care services must be made available to all Canadians and efforts to broaden the availability of palliative care in Canada should be intensified.6 10. The CMA calls upon the federal government, in cooperation with provincial and territorial governments, to improve access to pediatric palliative care through enhanced funding, training and awareness campaigns.7 11. The CMA will engage in physician human resource planning to develop an appropriate strategy to ensure the delivery of quality palliative care throughout Canada.8 Education 12. All physicians require basic competencies in palliative care and may require enhanced skills appropriate to their practice. 13. The CMA requests that all Canadian faculties of medicine create a training curriculum in palliative care suitable for physicians at all stages of their medical education and relevant to the settings in which they practise.9 Role of governments 14. The CMA calls on governments to work toward a common strategy for palliative care to ensure equitable access to and adequate standards for quality palliative care.10 15. The CMA recommends that all relevant legislation be amended to recognize that any person whose medical condition warrants it is entitled to receive palliative care.11 16. The CMA supports emergency funding for end-of-life care for uninsured people residing in Canada.12 BACKGROUND In Canada, the impact of end-of-life care on both individuals and the health care system is "staggering," and the demand for this care will continue to grow as the population ages.13 It is estimated that the number of Canadians dying each year will increase by 40% to 330,000 by 2026. The well-being of an average of five others will be affected by each of those deaths, or more than 1.6 million people.14 Against this backdrop, the availability of and access to palliative care is an urgent policy and practice imperative. There has been mounting support for, and mounting criticism of the lack of, a national strategy for palliative care.15 The delivery of palliative care varies greatly across Canada due to differences in regional demographics, societal needs, government involvement and funding structures. Similarly, funding and legislation supporting access to palliative care services vary significantly between jurisdictions. A recent survey of Canadian physicians who provide palliative medicine found that: (1) Canada needs an adequate palliative medicine workforce; (2) primary care providers need more support for palliative care education and training; (3) palliative medicine as a distinct discipline must be further developed to better meet the complex needs of patients; and (4) Canada must ensure minimum palliative medicine standards are met.16 In an effort to address the current challenges in palliative care and improve both the quality of care and access to care, the CMA developed recommendations for a national call to action: 1. All patients should have a primary care provider that can support them with their palliative care needs or else refer these patients earlier to a palliative care team to establish goals of care. 2. Physicians should provide leadership at local, regional, provincial/territorial and federal levels to promote the establishment of integrated models of palliative care. 3. All physicians should obtain essential palliative care skills and knowledge to provide basic palliative care services to their patients. 4. Physicians should advocate for adequate and appropriate home palliative care resources so their patients can stay in their homes as long as possible. 5. Physicians should advocate for an adequate number of palliative and/or hospice care beds to meet their communities' needs. 6. Continuing care facilities and long-term care homes should have in-house palliative care physician support on their palliative care teams. 7. Physicians should support the valuable work of hospice volunteers. 8. Medical students are encouraged to look at palliative care as a rewarding career. 9. Practising palliative care physicians are encouraged, if needed, to obtain additional certified training in palliative care from either the Royal College of Physicians and Surgeons of Canada or the College of Family Physicians of Canada. 10. Physicians acknowledge the value of and support the participation of family and friends in caring for their loved ones at the end of life. Integrated palliative approach to care There are four main models of palliative care delivery in Canada: integrated palliative care programs, continuing care and long-term care facilities, residential hospices, and home-based palliative care. Palliative care was originally developed in cancer care to provide patients dying of cancer with care at the very end of life by a specialized palliative care team.17 This model has evolved significantly in response to the increasing occurrence of, and burden posed by, complex chronic disease18. Palliative care is now also provided to patients with multiple co-occurring morbidities who require multiple interventions. It is now recognized to benefit all those living with life-limiting acute or chronic conditions, including, or perhaps especially, when it is initiated earlier in the disease trajectory. Evidence shows that integrated and early provision of palliative care leads to: (1) better outcomes than those obtained with treatment alone (e.g., improvements in symptoms, quality of life and patient satisfaction; positive effects on emotional wellness; decreased suffering; and at times increased longevity) and (2) better use of resources (e.g., less burden on caregivers, more appropriate referrals to hospice palliative care, more effective use of palliative care experts, less use of emergency and intensive interventions and decreased cost of care).19-20-21-22 Taken together, these studies validate the benefits of integrating palliative care services with standard treatment and involving palliative care providers early, a collaborative approach that transcends the conventional view that palliative care is care delivered at the very end of life. At present, there is strong support for the development and implementation of an integrated palliative approach to care. Integration effectively occurs: * throughout the disease trajectory; * across care settings (primary care, acute care, long-term and complex continuing care, residential hospices, shelters, home); * across professions/disciplines and specialties; * between the health care system and communities; and * with changing needs from primary palliative care through to specialist palliative care teams. The integrated palliative approach to care focuses on meeting a person's and family's full range of physical, psychosocial and spiritual needs at all stages of frailty or chronic illness, not just at the end of life.23 It is provided in all health care settings. The palliative approach to care is not delayed until the end stages of an illness but is applied earlier to provide active comfort-focused care and a positive approach to reducing suffering. It also promotes understanding of loss and bereavement (Fig. 1). Figure 1 Specialized palliative units and hospices are essential for end-of-life care for some individuals but are not appropriate for all persons facing life-limiting chronic conditions. When a palliative approach is offered in multiple settings, people and their families can receive better care through the many transitions of chronic conditions like dementia, lung, kidney and heart diseases, and cancer. This requires that all physicians be competent in initiating a primary palliative approach: they must be able to engage in advance care planning discussions, ask about physical and emotional symptoms and make appropriate, timely referrals to other providers and resources. Primary care physicians may need to develop more expertise in palliative care. A cadre of expert palliative care physicians will be required to provide care in complex cases, engage in education and research, and provide support for health professional colleagues providing palliative care in multiple settings. All health professionals must be able to practise competently in an integrated palliative approach to care. At the heart of an integrated palliative approach to care are a patient and family surrounded by a team of multidisciplinary professionals and community providers (Fig. 2). While team members vary depending on the needs of the patients and families, the principles of whole-person care and family care do not change. This allows patients and families to have their symptoms managed, receive care in the setting of their choice, engage in ongoing discussions about their preferences for care and experience a sense of autonomy in living their lives well. Figure 2 A report on The Way Forward, a project of the Quality End-of-Life Coalition of Canada and the Canadian Hospice Palliative Care Association, summarizes the situation as follows: "Only a small proportion of Canadians will need the kind of complex, intensive or tertiary hospice palliative care provided by expert palliative care teams in institutional settings, such as residential hospices and acute care hospitals. However, everyone who is becoming frail or is faced with a chronic illness could benefit from certain key palliative care services. As our population ages, we must ensure that all Canadians have access to palliative services integrated with their other care that will help them manage symptoms, enhance their lives, give them a greater sense of control, and enable them to make informed decisions about the care they want. More equitable access to palliative care integrated with their other care will enable more Canadians to live well with their illness up to the end of life. It will also enable more people to receive care in the setting of their choice and reduce the demand on acute care resources." 24 Access to palliative care services There are currently no reliable data on the number of specialized or semi-specialized palliative care physicians in Canada. It is difficult to count these physicians because palliative care has not historically existed as a specialty. Physicians practising palliative care have a wide variety of backgrounds and training, and many provide palliative care on a part-time basis. The Canadian Society of Palliative Care Physicians is currently working with partner organizations including the CMA, the Royal College of Physicians and Surgeons and the College of Family Physicians of Canada to better define the different types of palliative care physicians to conduct a meaningful count. On the question of access, studies have found that palliative care services are not aligned with patient preferences. For example, while 70% of hospitalized elderly patients reported wanting comfort measures rather than life-prolonging treatment, more than two-thirds were admitted to intensive care units.25 Most patients and caregivers report wanting to die at home26 and in-home palliative team care is a cost-effective intervention,27 but the value of this form of care is not reflected in many provincial policies. Instead, Canadian families frequently shoulder 25% of the total cost of palliative care because they must pay for home-based services,28 such as nursing and personal care services, that are not provided by governments. With the goal of improving the congruence between patient treatment preferences for end-of-life care and the services provided, Health Quality Ontario developed an evidentiary platform to inform public policy on strategies to optimize quality end-of-life care in in-patient and outpatient (community) settings. It identified four domains in which access to end-of-life care should be optimized to align with patient preferences: (1) location (determinants of place of death); (2) communication (patient care planning discussions and end-of-life educational interventions); (3) team-based models of care; and (4) services (cardiopulmonary resuscitation [CPR] and supportive interventions for informal caregivers).29 Education It is well recognized that education in palliative care is lacking in medical school and residency training. In response, the Association of Faculties of Medicine of Canada, in partnership with the Canadian Hospice Palliative Care Association and the Canadian Society of Palliative Care Physicians, conducted the Educating Future Physicians in Palliative and End-of-Life Care Project30 to develop consensus-based competencies for undergraduate medical trainees and a core curriculum that was implemented in all 17 Canadian medical schools. Despite these efforts, a survey conducted by the Canadian Society of Palliative Care Physicians found that the competencies are not being consistently taught in medical schools, as evidenced by the fact that 10 medical schools offered less than 10 hours of teaching on palliative care and two offered none.31 Moreover, evidence suggests that Canadian physicians are not consistently or adequately trained in palliative care. There is a general lack of providers trained in palliative care for service provision, teaching, consultative support to other physicians and research. To fill the observed gap in education, the Royal College of Physicians and Surgeons of Canada is developing Palliative Medicine as a subspecialty, and the College of Family Physicians of Canada is developing a Certificate of Added Competence in Palliative Care. What is more, different levels of palliative care competencies are required for different physicians: * All physicians require basic skills in palliative care. * Palliative consultants and physicians who frequently care for patients with chronic illnesses and/or frail seniors require enhanced skills. * Palliative medicine specialists and palliative medicine educators require expert skills. More broadly, the undergraduate curricula of all health care disciplines should include instruction in the principles and practices of palliative care, including how to access specialized palliative care consultation and services. Role of governments Access to palliative care must be treated with the same consideration as access to all other medical care. Provincial/territorial and federal legislation, however, is vague in this regard and does not recognize access to palliative care as an entitlement. Government funding of community-based hospice palliative care has not increased proportionately to the number of institutionally based palliative care beds that have been cut, leaving a significant gap in the health care system.32 To address this issue, efforts to broaden the availability of and access to palliative care in Canada need to be intensified. It is imperative that governments develop a common palliative care strategy to ensure equitable access to and adequate standards for quality palliative care, including emergency funding for those who are uninsured. Glossary Integrated palliative approach to care: An approach that focuses on quality of life and reduction of suffering as a goal of care. This approach may coexist with other goals of care - prevention, cure, management of chronic illness - or be the sole focus of care. The palliative approach integrates palliative care services throughout the treatment of a person with serious life-limiting illness, not just at the very end of life. Palliative care services: Generally consists of palliative care provided by a multidisciplinary team. The team may include a primary care physician, a palliative care physician, nurses, allied health professionals (as needed), social workers, providers of pastoral care and counselling, bereavement specialists and volunteers. The team members work together in a shared care model. Shared care model: An approach to care that uses the skills and knowledge of a range of health professionals who share joint responsibility for an individual's care. This model involves monitoring and exchanging patient data and sharing skills and knowledge among disciplines.33 References 1 Policy Resolution GC99-87 - Access to end-of-life and palliative care services. Ottawa: Canadian Medical Association; 1999. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2015 Nov 26). 2Policy Resolution GC14-20 - Palliative care services and expertise. Ottawa: Canadian Medical Association; 2014. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2015 Nov 26). 3Policy Resolution GC13-67 - Palliative Care. Ottawa: Canadian Medical Association; 2013. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2015 Nov 26). 4Policy Resolution GC13-66 - Palliative Care Services. Ottawa: Canadian Medical Association; 2013. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2015 Nov 26). 5 Policy Resolution GC13-80 - Collaborative palliative care model. Ottawa: Canadian Medical Association; 2013. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2015 Nov 26). 6Policy Document PD15-02 - Euthanasia And Assisted Death (Update 2014). Ottawa: Canadian Medical Association; 2015. Available: https://www.cma.ca/Assets/assetslibrary/document/en/advocacy/EOL/CMA_Policy_Euthanasia_Assisted%20Death_PD15-02-e.pdf#search=Euthanasia%20and (accessed 2015 Nov 26). 7 Policy Resolution GC06-12 - Access to pediatric palliative care. Ottawa: Canadian Medical Association; 2006. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2015 Nov 26). 8Policy Resolution GC14-23 - Delivery of quality palliative end-of-life care throughout Canada. Ottawa: Canadian Medical Association; 2014. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2015 Nov 26). 9Policy Resolution GC13-71 - Training in palliative care. Ottawa: Canadian Medical Association; 2013. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2015 Nov 26). 10Policy Document PD10-02 - Funding the continuum of care.Ottawa: Canadian Medical Association; 2010. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2015 Nov 26). 11Policy Resolution GC13-70 - Palliative Care. Ottawa: Canadian Medical Association; 2013. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2015 Nov 26). 12Policy Resolution GC14-26 - Emergency funding for end-of-life care for uninsured people residing in Canada. Ottawa: Canadian Medical Association; 2014. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2015 Nov 26). 13 OHTAC End-of-Life Collaborative. Health care for people approaching the end of life: an evidentiary framework. Toronto: Health Quality Ontario; 2014. Available: http://www.hqontario.ca/evidence/publications-and-ohtac-recommendations/ontario-health-technology-assessment-series/eol-evidentiary-framework. 14 Quality End-of-Life Care Coalition of Canada. Blueprint for action 2010 to 2012. Ottawa: Quality End-of-Life Care Coalition of Canada; 2010. Available: http://www.qelccc.ca/media/3743/blueprint_for_action_2010_to_2020_april_2010.pdf. 15 Fowler R, Hammer M. End-of-life care in Canada. Clin Invest Med. 2013;36(3):E127-E32. 16 Canadian Society of Palliative Care Physicians. Highlights from the National Palliative Medicine Survey. Surrey (BC): Canadian Society of Palliative Care Physicians, Human Resources Committee; May 2015. 17 Bacon J. The palliative approach: improving care for Canadians with life-limiting illnesses. Ottawa: Canadian Hospice Palliative Care Association; 2012. Available: http://www.hpcintegration.ca/media/38753/TWF-palliative-approach-report-English-final2.pdf. 18 Ontario Health Technology Advisory Committee OCDM Collaborative. Optimizing chronic disease management in the community (outpatient) setting (OCDM): an evidentiary framework. Toronto: Health Quality Ontario; 2013. Available: www.hqontario.ca/Portals/0/Documents/eds/ohtas/compendium-ocdm-130912-en.pdf. 19 Zimmermann C, Swami N, Krzyzanowska M, Hannon B, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet. 2014;383(9930):1721-1730. 20 Klinger CA, Howell D, Marshall D, Zakus D, et al. Resource utilization and cost analyses of home-based palliative care service provision: the Niagara West end-of-life shared-care project. Palliat Med. 2013;27(2):115-122. 21 Temel JS, Greer JA, Muzikansky MA, Gallagher ER, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. NEJM. 2010;363:733-742. 22 Bakitas M, Lyons KD, Hegel MT, Balan S, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA. 2009;302:741-749. 23 Quality End-of-Life Care Coalition of Canada, Canadian Hospice Palliative Care Association. The Way Forward National Framework: a roadmap for an integrated palliative approach to care. Ottawa: Quality End-of-Life Care Coalition of Canada; 2014. Available: http://www.qelccc.ca/media/3743/blueprint_for_action_2010_to_2020_april_2010.pdf 24 Quality End-of-Life Coalition of Canada, Canadian Hospice Palliative Care Association. The Way Forward National Framework: a roadmap for the integrated palliative approach to care. Quality End-of-Life Coaltion of Canada; 2014. Available: http://www.hpcintegration.ca/media/60044/TWF-framework-doc-Eng-2015-final-April1.pdf. 25 Cook D, Rocker G. End of life care in Canada: a report from the Canadian Academy of Health Sciences Forum. Clin Invest Med. 2013;36(3):E112-E113. 26 Brazil, K, Howell D, Bedard M, Krueger P, et al. Preferences for place of care and place of death among informal caregivers of the terminally ill. Palliat Med. 2005;19(6):492-499. 27 Pham B, Krahn M. End-of-life care interventions: an economic analysis. Ontario Health Quality Technology Assessment Series. 2014;14(18):1-70. Available: http://www.qelccc.ca/media/3743/blueprint_for_action_2010_to_2020_april_2010.pdf. 28 Dumont S, Jacobs P, Fassbender K, Anderson D, et al. Costs associated with resource utilization during the palliative phase of care: a Canadian perspective. Palliat Med. 2009;23(8)708-717. 29 OHTAC End-of-Life Collaborative. Health care for people approaching the end of life: an evidentiary framework. Toronto: Health Quality Ontario; 2014. Available: www.hqontario.ca/evidence/publications-and-ohtac-recommendations/ontario-health-technology-assessment-series/eol-evidentiary-framework 30 Association of Faculties of Medicine of Canada. Educating future physicians in palliative and end-of-life care. Ottawa: Association of Faculties of Medicine of Canada; 2004. Available: http://70.38.66.73/social-educating-physicians-e.php. 31 Daneault S. Undergraduate training in palliative care in Canada in 2011. Montreal: Soins palliatifs, Hôpital Notre-Dame, Centre Hospitalier de l'Université de Montréal; 2012. 32 Canadian Hospice Palliative Care Association. Fact sheet 2012: hospice palliative care in Canada. Available: http://www.chpca.net/media/330558/Fact_Sheet_HPC_in_Canada%20Spring%202014%20Final.pdf. 33 Moorehead, R. Sharing care between allied health professional and general practitioners. Aust Fam Physician. 1995;24(11).
Documents
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CMA’s formal submission to the Federal External Panel on assisted dying

https://policybase.cma.ca/en/permalink/policy11750
Last Reviewed
2019-03-03
Date
2015-10-19
Topics
Ethics and medical professionalism
  1 document  
Policy Type
Parliamentary submission
Last Reviewed
2019-03-03
Date
2015-10-19
Topics
Ethics and medical professionalism
Text
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. CONSCIENTIOUS OBJECTION 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. ADDITIONAL SUPPORTS 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. Sincerely, Cindy Forbes, MD, CCFP, FCFP President Jeff Blackmer MD, MHSc, FRCPC Vice-President, Medical Professionalism Enclosed: 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: Foundational principles 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. Recommendations 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. 1.3 Capacity * 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. 1.4 Voluntariness * 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), [2015] 1 SCR 331, 2015 SCC 5 (CanLII)
Documents
Less detail

Supporting consultations while developing policies, regulations and guidelines on physician-assisted dying

https://policybase.cma.ca/en/permalink/policy11635
Last Reviewed
2018-03-03
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-37
The Canadian Medical Association supports consultation with the Canadian Society of Palliative Care Physicians and other relevant physician societies when policies, regulations and guidelines are developed on physician-assisted dying.
Policy Type
Policy resolution
Last Reviewed
2018-03-03
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-37
The Canadian Medical Association supports consultation with the Canadian Society of Palliative Care Physicians and other relevant physician societies when policies, regulations and guidelines are developed on physician-assisted dying.
Text
The Canadian Medical Association supports consultation with the Canadian Society of Palliative Care Physicians and other relevant physician societies when policies, regulations and guidelines are developed on physician-assisted dying.
Less detail

Medical certification of death forms in cases involving physician-assisted death

https://policybase.cma.ca/en/permalink/policy11638
Last Reviewed
2018-03-03
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-40
The Canadian Medical Association supports the development of pan-Canadian guidelines for physicians on the terminology to be used when completing medical certification of death forms in cases involving physician-assisted death.
Policy Type
Policy resolution
Last Reviewed
2018-03-03
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-40
The Canadian Medical Association supports the development of pan-Canadian guidelines for physicians on the terminology to be used when completing medical certification of death forms in cases involving physician-assisted death.
Text
The Canadian Medical Association supports the development of pan-Canadian guidelines for physicians on the terminology to be used when completing medical certification of death forms in cases involving physician-assisted death.
Less detail

Principles for the protection of patient privacy

https://policybase.cma.ca/en/permalink/policy13833
Date
2017-12-09
Topics
Health information and e-health
Ethics and medical professionalism
  2 documents  
Policy Type
Policy document
Date
2017-12-09
Replaces
PD11-03 Principles for the Protection of Patients' Personal Health Information
Topics
Health information and e-health
Ethics and medical professionalism
Text
Patients have a right to privacy and physicians have a duty of confidentiality arising from the patient-physician relationship to protect patient privacy. The right to privacy flows from the principle of respect for patient autonomy, based on the individual's right to conduct and control their lives as they choose.1 When approaching any ethical question around privacy, the principle of respect for patient autonomy must be balanced against other competing principles (e.g. beneficence, non-maleficence). The protection of privacy and the concomitant duty of confidentiality are essential to foster trust in the patient-physician-relationship, the delivery of good patient care and a positive patient care experience. Privacy protection is an important issue for Canadians,2 and research suggests that patients may withhold critical health information from their health care providers because of privacy concerns.3 Patients will be more willing to share complete and accurate information if they have a relationship of trust with their physician and are confident that their information will be protected.4 In today's ever-evolving technological environment and due to the shift away from the traditional (paternalistic) physician-patient relationship, patients, physicians and other public and private stakeholders are using and sharing personal health information in new and innovative ways. This raises new challenges for clinical practice and, crucially, how to navigate expanded uses of data via the use of new technologies and the requirements of patient privacy. Institutions, clinics, and physician-group practices may share responsibility with the physician for the protection of patient information. There is thus a tension between physician and institutional responsibilities to protect patient information, challenged by the rapidly changing use and adoption of new technologies. While this will continue to redefine expectations of privacy and confidentiality, there are several foundational principles that remain unchanged. SCOPE OF POLICY The Canadian Medical Association (CMA) Principles for the Protection of Patients' Personal Health Information aim to provide guidance on key ethical considerations pertinent to the protection of patient information in a way that takes into account a physician's (including medical learner) ethical, professional, and legal obligations. The Principles are not designed to serve as a tool for legislative compliance in a particular jurisdiction or to provide a standard of care. Physicians should be aware of privacy legislation in the jurisdiction in which they practice, the standards and expectations specified by their respective regulatory authorities (including Privacy Commissioners), publications and risk management education provided by the CMPA as well as policies and procedures of any given setting (e.g., a regional health authority or a hospital). SUBSTANTIVE PRINCIPLES THAT GUIDE THE OBLIGATIONS OF THE PHYSICIAN TO PROTECT PATIENT PRIVACY 1. Trust * Trust is the cornerstone of the patient-physician relationship and plays a central role in providing the highest standard of care. * Physicians and their patients build relationships of trust that enable open and honest dialogue and foster patients' willingness to share deeply personal information (often) in conditions of vulnerability. * Physicians can cultivate and maintain patient trust by, unless the consent of the patient has been obtained to do otherwise, collecting health information only to benefit the patient, by sharing information only for that purpose, and by keeping patient information confidential; patient trust has been found to be the most powerful determinant of the level of control patients want over their medical records.5 * To maintain trust, physicians must consider the duty to care and the duty not to harm the patient in evaluating privacy requirements. * The extent to which a patient expects (and may tolerate a loss of) privacy and confidentiality is culturally and individually relative.6 2. Confidentiality * Physicians owe a duty of confidentiality to their patients; there is both an ethical (respect for autonomy) and a legal basis imposed by privacy legislation) for this duty. * The duty to maintain patient confidentiality, like trust, is fundamental to the therapeutic nature of the patient-physician relationship; it creates conditions that allow patients to openly and confidently share complete health information, resulting in a stronger physician-patient relationship and better delivery of care.7 * The duty to maintain patient confidentiality means that physicians do not share the health information with anyone outside of the patient's circle of care, unless authorized to do so by the patient.1,8 There are varying interpretations of what constitutes the patient's circle of care; this depends on the facts of the situation and the jurisdiction.9 * Privacy requirements raise complex issues in learning environments and quality improvement initiatives. It is desirable that any of the patient's physicians who will have ongoing care interactions with the patient can remain included in information-sharing about the patient. * Shared electronic health records present challenges to confidentiality. For example, patients may wish to limit some aspects of their record to only some providers within their circle of care.10 * In practice, respecting privacy and the duty of confidentiality govern the physician's role as data steward, responsible for controlling the extent to which information about the person is protected, used or disclosed.11 A central rule to balancing a patient's right to privacy and the duty of confidentiality is the "minimum necessary" use and disclosure of personal health information, whereby a data steward should use or disclose only the minimum amount of information necessary to fulfil the intended purpose. In some circumstances, de-identifying or aggregating personal health information before use or disclosure can minimize the amount of information disclosed.12 * The duty to maintain patient confidentiality is not absolute and is subject to exceptions in limited circumstances,13 i.e., when required or permitted by law to disclose information (see below in Data Stewardship: Collection, use and disclosure of personal health information). 3. Consent * Patient consent is an important mechanism for respecting patient autonomy; obtaining voluntary and informed consent to share patient information is fundamental to the protection of privacy and the duty of confidentiality. * Physicians are generally required to obtain informed consent from the patient before they can disclose the patient's personal health information. Consent is only informed if there is disclosure of matters that a reasonable person in the same circumstances would want to know, including 1) to whom the patient information will be disclosed, 2) whether it could be disclosed to other third parties, and 3) the purpose for which it could be used or disclosed. * While informed consent is required as a general rule, physicians may infer that they have the patient's implied consent to collect, use, disclose and access personal health information 1) for the purpose of providing or assisting in providing care (i.e., share only the necessary information with those involved within the patient's circle of care); and 2) to store personal health information in a medical record (i.e., paper, electronic, or hospital-based). Physicians will want to consider if it is appropriate in the circumstances to advise the patient when a disclosure has been made. * When the patient is a minor, the physician must consider whether it is the parent or the child who determines the use and disclosure of the minor's personal health information. A young person who is deemed to understand fully the implications of a decision regarding proposed collection, use or disclosure of personal health information is generally deemed to have control over their personal health information with respect to the decision. * Where the patient is not capable to provide the required consent (e.g. is deemed to be incompetent), physicians must seek consent from the patient's substitute decision-maker. 4. Physician as data steward * As data stewards, physicians have the responsibility to understand their role in protecting patient privacy and appropriate access to patient information. * The information contained in the medical record belongs to the patient who has a general right of access to their personal health information, and the right to control the use and further disclosure and to the continued confidentiality of that information. * A data steward (e.g., physician, institution or clinic) holds the physical medical record in trust for the care and benefit of the patient.14 * Physicians should provide their patients access to their medical record, if requested.15 (See below in Data Stewardship: Access to personal information). * Physicians ought to have appropriate access to personal health information and have the ability to provide their patients with access to their medical record. Appropriate access should be interpreted to include access for patient follow up (as part of the duty to care) and review for the purpose of improving patient care. * Physicians should consider consulting available resources to assist them in fulfilling their duties as data stewards. PROCEDURAL PRINCIPLES THAT GUIDE THE APPLICATION OF PHYSICIAN OBLIGATIONS Physicians must manage personal health information in compliance with relevant legislation that establishes rules governing the access, collection, use, disclosure, and retention of personal health information, provincial privacy laws, and professional expectations and regulations specified by their respective regulatory authorities. 1. Data Stewardship: Access to personal information * Patients have a right of reasonable access to the personal health information in their medical record (i.e., paper, electronic, or hospital-based) under the control or in the custody of a physician, institution, or clinic. * In exceptional situations, physicians can refuse to release the information in the patient's medical record. 2. Data Stewardship: Collection, use and disclosure of personal health information * There are circumstances where there are required (e.g., monitoring of claims for payment, subpoenas) and permitted disclosures of personal health information without patient consent (e.g., where the maintenance of confidentiality would result in a significant risk of substantial harm to the patient or to others). * Security safeguards must be in place to protect personal health information in order to ensure that only authorized collection, use, disclosure or access occurs. * Physicians play an important role in educating patients about possible consensual and non-consensual uses and disclosures that may be made with their personal health information, including secondary uses of data for, e.g., epidemiological studies, research, education, and quality assurance, that may or may not be used with explicit consent. 3. Data Stewardship: Retention of personal health information * Personal health information should be retained for the period required by any applicable legislation and as specified by their respective regulatory authorities. It may be necessary to maintain personal health information beyond the applicable period where there is a pending or anticipated legal proceeding related to the care provided to the patient. * Likewise, physicians should transfer and dispose of personal health information in compliance with any applicable legislation and professional expectations outlined by their respective regulatory authorities. * Physicians are encouraged to seek technical assistance and advice on the secure transfer, disposal, and/or selling of electronic records.15 4. Data Stewardship: Use of technology * Physicians should obtain patient consent to use electronic means and/or devices for patient care (e.g., sending digital photographs) and for communicating patient information (e.g., the use of email). To obtain informed consent, physicians should explain to patients that there are necessary benefits and risks in using technologies in clinical contexts. The CMPA has provided a written consent form to that effect that can be included in the patient's medical record. * As a general practice, physicians are encouraged to make use of technological innovations and must evaluate whether the technology is appropriate for patient care and has reasonable safeguards to protect patient privacy. Approved by the CMA Board of Directors December 2017 See also Background to CMA Policy Principles for the Protection of Patient Privacy REFERENCES 1 Martin JF. Privacy and confidentiality. In: ten Have H, Gordijn B (Eds). Handbook of global bioethics. New York: Springer, Dordrecht; 2014. p.119-37. 2 Office of the Privacy Commissioner of Canada. Canadians and privacy final report. Gatineau: Office of the Privacy Commissioner of Canada; 2009. Available: https://www.priv.gc.ca/information/por-rop/2009/ekos_2009_01_e.asp (accessed 2017 Nov 17). 3 Canadian Medical Protective Association (CMPA). Privacy and a wired world - Protecting patient health information. Ottawa: CMPA; 2011 Dec. Available: https://www.cmpa-acpm.ca/en/advice-publications/browse-articles/2011/privacy-and-a-wired-world-protecting-patient-health-information (accessed 2017 Nov 17). 4 Royal College of Physicians and Surgeons of Canada (RCPSC). Duty of confidentiality. Ottawa: RCPSC; 2017. Available: http://www.royalcollege.ca/rcsite/bioethics/cases/section-3/duty-confidentiality-e (accessed 2017 Dec 15). 5 Damschroder LJ, Pritts JL, Neblo MA, Kalarickal RJ, Creswell JW, Hayward RA. Patients, privacy and trust: patients' willingness to allow researchers to access their medical records. Soc Sci Med 2007;64:223-35. 6 Campbell JI, Eyal N, Musiimenta A, Haberer JE. Ethical questions in medical electronic adherence monitoring. J Gen Intern Med 2016;31:338-42. Available: https://link.springer.com/content/pdf/10.1007%2Fs11606-015-3502-4.pdf (accessed 2017 Nov 17). 7 Crook MA. The risks of absolute medical confidentiality. Sci Eng Ethics 2013;19:107-22. 8 Cohen I, Hoffman A, Sage W (Eds). The Oxford Handbook of U.S. Health Law. New York: Oxford University Press; 2015. 9 Canadian Medical Protective Association (CMPA). The voice of professionalism within the system of care. Ottawa: CMPA; 2012 Oct. Available: https://www.cmpa-acpm.ca/en/advice-publications/browse-articles/2012/the-voice-of-professionalism-within-the-system-of-care (accessed 2017 Nov 17). 10 Canadian Medical Protective Association (CMPA). Did you know? Patients can restrict access to their health information. Ottawa: CMPA; 2017 Nov. Available: https://www.cmpa-acpm.ca/en/advice-publications/browse-articles/2017/did-you-know-patients-can-restrict-access-to-their-health-information (accessed 2017 Nov 17). 11 Francis JG, Francis LP. Privacy, confidentiality, and justice. J Soc Philos 2014;45:408-31. 12 Burkle CM, Cascino GD. Medicine and the media: balancing the public's right to know with the privacy of the patient. Mayo Clin Proc 2011;86:1192-6. 13 Canadian Medical Protective Association (CMPA). When to disclose confidential information. Ottawa: CMPA; 2015 Mar. Available: https://www.cmpa-acpm.ca/en/advice-publications/browse-articles/2015/when-to-disclose-confidential-information (accessed 2017 Nov 17). 14 Canadian Medical Protective Association (CMPA). Releasing a patient's personal health information: What are the obligations of the physician? Ottawa: CMPA; 2012 Oct. Available: https://www.cmpa-acpm.ca/en/advice-publications/browse-articles/2012/releasing-a-patient-s-personal-health-information-what-are-the-obligations-of-the-physician (accessed 2017 Nov 17). 15 Canadian Medical Protective Association (CMPA). Protecting patient health information in electronic records. Ottawa: CMPA; 2013 Oct. Available: https://www.cmpa-acpm.ca/en/advice-publications/browse-articles/2013/protecting-patient-health-information-in-electronic-records (accessed 2017 Nov 17). (c) 2017 Canadian Medical Association. You may, for your non-commercial use, reproduce, in whole or in part and in any form or manner, unlimited copies of CMA Policy Statements provided that credit is given to Canadian Medical Association. BACKGROUND TO CMA POLICY PRINCIPLES FOR THE PROTECTION OF PATIENT PRIVACY See also CMA Policy on Principles for the Protection of Patient Privacy Context The advent of Electronic Medical Records, the rapid spread of mobile health apps, and the increasing use of social media within the health care community, have each created new challenges to maintaining a duty of confidentiality within the physician-patient relationship. These technologies present both opportunities and challenges with respect to medical professionalism.1 The permeation of these types of interactions into everyday life now places physicians in new situations that some find difficult to navigate.2 These challenges will only increase in the coming years, as the use of online technologies in health care is continuously growing.3 Canada is only in the early stages of managing the emerging issues of technology-induced errors that compromise privacy in the health care setting.4 Therefore, this paper will briefly discuss the importance of protecting privacy, followed by an overview of the main challenges to maintaining privacy as the physician-patient relationship evolves at the backdrop of emerging technologies. Privacy and Confidentiality The overlapping, but not identical, principles of the protection of privacy and the duty of confidentiality are essential to the physician-patient relationship. These principles not only foster trust, but also the delivery of effective and lasting care. Rooted in the Hippocratic Oath, the modern-day right to privacy flows from the principle of autonomy, which attributes to individuals the right to conduct and control their lives as they choose.5 Privacy protection is an important issue to Canadians,6 with research suggesting that patients may even withhold critical health information because of privacy concerns.7 Health care professionals are bound by legal and ethical standards to maintain privacy and confidentiality of patient information.8 Physicians must therefore be aware of the implications of privacy legislation specific to their jurisdiction.7 The duty to protect patient privacy is important to uphold, as health information can potentially be identifiable and sensitive; the confidentiality of this information must therefore be protected to ensure that patient privacy is not breached. 9 While the traditional, and largely obsolete, models of the physician-patient relationship involve a unidirectional flow of information, the ease at which patients can now access medical information through the Internet, and the use of social media within the health care community, have reinterpreted how information is communicated from physician to patient, and vice versa.10 We must therefore re-define expectations of privacy and confidentiality, first by distinguishing one from the other. The terms "privacy" and "confidentiality" are often used interchangeably by both researchers and clinicians. Several bioethics discussions on the distinction between these terms places confidentiality under the umbrella of privacy.11 While confidentiality involves the information itself, which is disclosed or not, privacy is about the impact of that disclosure on the person.9 Privacy seems to be more intimately linked to the individual, focusing on the circumstances under which the information is used.12-13 Confidentiality, on the other hand, is a duty that health professionals have towards their patients to not share the information exchanged during their encounter, unless authorized by the patient.5,12 In practice, the duty of confidentiality governs the physician's role as data stewards, responsible for controlling the extent to which information about the person is protected, used or disclosed.14 As one paper describes, "privacy is invaded, confidentiality is breached."13 From a patient perspective, it is important to respect and protect privacy because it allows individuals time and space to share their concerns without feeling judged or misunderstood,11 resulting in a stronger physician-patient relationship and better delivery of care. However, from a research perspective, a fine balance must be struck between using accurate information while still upholding the privacy rights of individuals.11 As such, the argument for absolute confidentiality puts a near impossible burden on research clinicians.11 Moreover, from a public safety perspective, a physician may be morally and legally required to break confidentiality in order to protect both the patient and others who may be involved. The challenge is to balance the traditional goal of confidentiality - to protect patient privacy and interest - with that of third parties and public health.5 Therefore, a central rule to balancing confidentiality with a patients' right to privacy is the "minimum necessary" use and disclosure of personal health information, whereby a data steward should use or disclose only the minimum amount of information necessary to fulfil the intended purpose.8 It is equally important to recognize that the extent to which a patient may tolerate a loss of privacy is culturally and individually relative.15 Health care providers have a legal and ethical obligation to keep patient health information private, sharing it only with the authorization of the patient.16 Informed consent, therefore, appears to be a fundamental requirement to upholding confidentiality and patient privacy rights. Issues While emerging privacy issues touch many areas of practice, this section will emphasize three of the most prominent issues in recent literature: access and use of information, electronic medical and health records and, online communication and social media. 1. Technological change and institutional data stewardship In today's ever-evolving technological environment, including the emergence of shared electronic health records, online communication, social media, mobile applications, and big data, physicians, patients and other public and private stakeholders are using and sharing personal health information in new and innovative ways. The traditional (paternalistic) model of the physician-patient relationship involved a bidirectional flow of information. However, the ease at which patients can now access medical information from alternative sources via the Internet, and the use of social media within the health care community, has redefined how information is communicated from physician to patient, and vice versa.10 This raises new challenges for clinical practice, specifically how to navigate expanded access of data via the use of new technologies and the requirements of patient privacy by effectively managing security concerns. In many situations, the physician may not be the sole or primary custodian of (i.e., control access to) the patient's records once the health information is collected. Institutions, clinics, and physician-group practices may also have responsibility for patient information and therefore play an important role in ensuring it is protected. There is thus a grey area between physician and institutional responsibilities to protect patient information, challenged by the rapidly changing use and adoption of new technologies, such as electronic health and medical records. While this will continue to redefine expectations of privacy and confidentiality, there are several foundational principles that remain unchanged. 2. Electronic medical and health records Medical records are compiled primarily to assist physicians and other health care providers in treating patients.16 Yet, they are particularly vulnerable to privacy breaches when this information is exposed to secondary uses, including epidemiological studies, research, education and quality assurance. As contemporary information management and stewardship have had to evolve in response to emerging technology, the parameters of the "medical record" have grown increasingly ambiguous.17 With the proliferation of a wide variety of new health information technology (including electronic health and medical records), concerns about quality and safety have been raised.4 There is evidence that if such technology is not designed, implemented and maintained effectively, it may result in unintended consequences, including technology-induced errors and breaches of patient privacy.4 Reports involving Canada Health Infoway have even pointed to health information technology as a tool that may sometimes reduce rather than enhance patient safety, most often due to human factors. 4 As a result, recommendations have been made to develop a reporting system that would allow health professionals to anonymously report human errors resulting from the use of health information technology - a challenge in itself, as the distinction between human and technological error is often blurred.4 In Canada, a number of efforts have been undertaken by several organizations, including Health Canada and Canada's Health Informatics Organization.4 Yet, services aimed at improving health information technology safety, from a national level, remain poor.4 As a result, organizations like Canada Health Infoway have promoted the need for collaborative efforts to improve health information technology safety standards in Canada, 4 so to ensure that the current and future uses of "medical record" data are accurate and respectful of patient privacy. 3. Access and use of personal health information for research The courts have long established that health information belongs to the patient.18 As a result, privacy ownership refers to the belief that patients own their private information as well as the right to control access to this information.19 As in other jurisdictions, the overarching challenge in Canada is to strike a balance between enabling access to health and health-related data for research while still respecting Canadians' right to privacy and control over the confidentiality of their information.20 The integrity of healthcare information is fundamental, given that it is the basis on which treatment decisions are made both in research and in clinic. 9 There are three principles upon which information security is based: 9 1) only authorized people have access to confidential information; 2) information must be accurate and consistent, may only be modified by authorized people in ways that are appropriate; 3) information must be accessible by authorized users when needed. Canadian research ethics have demonstrated that beneficial work can be done while maintaining confidentiality to sensitive personal health information.21 Yet, the challenge remains to create a uniform system for accessing data and performing data-based research due to 1) the lack of consistency and clarity in Canada's ethical and legal framework and, 2) varied interpretations of key terms and issues across the country.21 For example, the term "non-identifiable data" remains ambiguous across provinces and is subject to interpretation by data custodians, who may consider their legal duty to protect privacy as precluding access to data.21 This lack of legal clarity has contributed to varied cautious and conservative interpretations of data access legislation.21 National uniform guidelines on the appropriate access, disclosure and use of personal health data would allow data stewards to advance their research while respecting their patients' right to privacy. 4. Online communication with patients and social media Social media and online communication is pervasive in Canadian society; from Facebook to Twitter, social media has changed the way people interact and disseminate information.21 There is currently widespread discussion among health care professionals and academics regarding the role that social media and online communication should play in the physician-patient relationship.22 A growing number of physicians have embraced the opportunities of interconnectivity that social media affords, implementing their own privacy procedures to reflect this new type of data collection, use and storage.7 While evidence has been lacking on whether the use of social media does improve patient outcomes,22 there is no denying that patients are seeking health care information from online platforms, including social media.22 This type of communication poses a unique set of opportunities and challenges for physicians: while the use of social media could increase physician reach and patient engagement, it can also blur boundaries between one's personal and professional life.22 Although patient-physician online communication is currently limited, physicians still feel that they are encountering an ethical dilemma, especially when they find themselves in boundary crossing situations, like a friend request from a patient.2 Physicians are particularly concerned that, through online communication, they may be exposed to medico-legal and disciplinary issues, especially with respect to patient privacy.2 Given different studies have suggested that unprofessional uses of social media are not uncommon,23 physicians who choose to communicate with patients online or through social media must remember that they are still governed by the same ethical and professional standards that remain paramount.22 As technology continues to evolve, so too will the traditional parameters of the patient-physician relationship. The physician's ethical and professional obligation to protect patient privacy, however, must remain paramount at the backdrop of technology use. Simply banning social media and online communication would neither eliminate risk, nor benefit patient care outcomes. 24 Instead, institutions should establish stringent policies that outline how to prevent or minimize the effects of privacy breaches associated with social media and online communication.25 This should also include a tracking mechanism to help balance the obligation to privacy with evolving technology.25 December 2017 See also CMA Policy on Principles for the Protection of Patient Privacy REFERENCES 1 Farnan JM, Snyder Sulmasy L, Worster BK, Chaudhry HJ, Rhyne JA, Arora VM. Online medical professionalism: patient and public relationships: policy statement from the American College of Physicians and the Federation of State Medical Boards. Ann Intern Med 2013;158(8):620-627. 2 Brown J, Ryan C. How doctors view and use social media: a national survey. J Med Internet Res 2014;16:e267. Available: https://doi.org/10.2196/jmir.3589 (accessed 2017 Nov 17). 3 Lambert KM, Barry P, Stokes G. Risk management and legal issues with the use of social media in the healthcare setting. J Healthc Risk Manag 2012;31(4):41-47. 4 Kushniruk AW, Bates DW, Bainbridge M, Househ MS, Borycki EM. National efforts to improve health information system safety in Canada, the United States of America and England. Int J Med Inform 2013;82(5):e149-160. 5 Martin JF. Privacy and confidentiality. In: ten Have H, Gordijn B (Eds). Handbook of global bioethics. New York: Springer, Dordrecht; 2014. p.120-1. 6 Office of the Privacy Commissioner of Canada. Canadians and privacy final report. Gatineau: Office of the Privacy Commissioner of Canada; 2009. Available: https://www.priv.gc.ca/information/por-rop/2009/ekos_2009_01_e.asp (accessed 2017 Nov 17). 7 Canadian Medical Protective Association (CMPA). Privacy and a wired world - Protecting patient health information. Ottawa: CMPA; 2011 Dec. Available: https://www.cmpa-acpm.ca/en/advice-publications/browse-articles/2011/privacy-and-a-wired-world-protecting-patient-health-information (accessed 2017 Nov 17). 8 Burkle CM, Cascino GD. Medicine and the media: balancing the public's right to know with the privacy of the patient. Mayo Clin Proc 2011;86:1192-6. 9 Williams PA. Information security governance: a risk assessment approach to health information systems protection. Stud Health Techol Inform 2013;193:186-206. 10 Borza LR, Gavrilovici C, Stockman R. Ethical models of physician-patient relationship revisited with regard to patient autonomy, values and patient education. Rev Med Chir Soc Med Nat Iasi 2015;119(2):496-501. 11 Crook MA. The risks of absolute medical confidentiality. Sci Eng Ethics 2013;19(1):107-122. 12 Cohen I, Hoffman A, Sage W (Eds). The Oxford handbook of U.S. health law. New York: Oxford University Press; 2015. 13 Francis L. Privacy and confidentiality: the importance of context. The Monist; 91(1);2008:52-67. 14 Francis JG, Francis LP. Privacy, confidentiality, and justice. J Soc Philos 2014;45:408-31. 15 Campbell JI, Eyal N, Musiimenta A, Haberer JE. Ethical questions in medical electronic adherence monitoring. J Gen Intern Med 2016;31:338-42. Available: https://link.springer.com/content/pdf/10.1007%2Fs11606-015-3502-4.pdf (accessed 2017 Nov 17). 16 Canadian Medical Association (CMA). Medical record confidentiality, access and disclosure. Ottawa: CMA; 2000. Available: https://www.cma.ca/Assets/assets-library/document/en/advocacy/policy-research/CMA_Policy_The_medical_record_confidentiality_access_and_disclosure_Update_2000_PD00-06-e.pdf (accessed 2017 Oct 30). 17 Fenton SH, Manion F, Hsieh K, Harris M. Informed Consent: Does anyone really understand what is contained in the medical record? Appl Clin Inform 2015;6(3):466-477. 18 Canada. Supreme Court. McInerney v MacDonald. Dom Law Rep. 1992 Jun 11;93:415-31. 19 Petronio S, Dicorcia MJ, Duggan A. Navigating ethics of physician-patient confidentiality: a communication privacy management analysis. Perm J 2012;16(4):41-45. 20 Council of Canadian Academies (CCA). Accessing health and health-related data in Canada. Ottawa: The Expert Panel on Timely Access to Health and Social Data for Health Research and Health System Innovation, Council of Canadian Academies; 2015. Available: http://www.scienceadvice.ca/uploads/eng/assessments%20and%20publications%20and%20news%20releases/Health-data/HealthDataFullReportEn.pdf (accessed 2017 Nov 17). 21 Canadian Medical Association (CMA). Social media and Canadian physician: Issues and rules of engagement. Ottawa: CMA; 2011. Available: https://www.cma.ca/Assets/assets-library/document/en/advocacy/CMA_Policy_Social_Media_Canadian_Physicians_Rules_Engagement_PD12-03-e.pdf (accessed 2017 Oct 30). 22 Eysenbach G. Medicine 2.0: Social networking, collaboration, participation, apomediation, and openness J Med Internet Res 2008;10(3):e22. 23 Mayer MA, Leis A, Mayer A, Rodriguez-Gonzalez A. How medical doctors and students should use social media: A review of the main guidelines for proposing practical recommendations. Stud Health Technol Info 2012;180:853-857. 24 Moses RE, McNeese LG, Feld LD, Feld AD. Social media in the health-care setting: Benefits but also a minefield of compliance and other legal issues. Am J Gastroenterol 2014;109(8):1128-1132. 25 Yang YT, Silverman RD. Mobile health applications: The patchwork of legal and liability issues suggests strategies to improve oversight. Health Aff (Millwood) 2014;33(2):222-227.
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Charter of Shared Values: A vision for intra-professionalism for physicians

https://policybase.cma.ca/en/permalink/policy13858
Date
2017-12-09
Topics
Ethics and medical professionalism
  2 documents  
Policy Type
Policy document
Date
2017-12-09
Replaces
CMA Charter for Physicians (Update 1999)
Topics
Ethics and medical professionalism
Text
What is it? The CMA Charter of Shared Values aims to identify shared values and commitments to each other and to the profession to which physicians and learners can commit to promote trust and respect within the profession and for each other, and identify opportunities for engagement and leadership to promote civility and confront incivility within the profession. Why does it matter? The Charter is intended to further strengthen professional responsibilities in support of a unified and aligned profession. We achieve the highest degree of both individual and collective success when we work together, commit together and believe together; when we share a clearly articulated set of common values, virtues and principles; and when we subscribe to the same explicit and implicit understandings. Commitments to Each Other: Our most important shared values RESPECT As a physician, I will strive to be respectful; I will recognize that everyone has inherent worth, is worthy of dignity, and has the right to be valued and respected, and to be treated ethically; I will respect others and their personal and professional dignity; and I will aim to promote and model respect through collaborative training and practice. INTEGRITY As a physician, I will strive to act with integrity; I will act in an honest and truthful manner, with consistency of intentions and actions; and I will act with moral concern to promote and model effective leadership and to achieve a good outcome for patients. RECIPROCITY As a physician, I will strive to cultivate reciprocal relationships; I will be kind with my physician colleagues, and expect them to respond similarly; I will share and exchange my knowledge and experience with them; and I will be generous with them in spirit and in time. CIVILITY As a physician, I will strive to be civil; I will respect myself and others, regardless of their role, even those with whom I may not agree; I will enter into communication with my physician colleagues with an attitude of active and open listening, whether it be in person, in writing, or virtually; and I will accept personal accountability. Commitments to the Profession 1. Commitment to promoting a culture of respect and collegiality As a physician, I will strive to build a culture based on mutual respect and collegiality where physicians treat each other as people in a shared endeavor, and promote civility. I will strive to:
Cultivate respectful, open, and transparent dialogue and relationships
Take responsibility for promoting civility and confronting incivility within the profession
Recognize the relative value among family medicine and specialties and across the educational spectrum, and of the profession’s shared contributions within health systems
Model healthy and supportive training and practice environments 2. Commitment to promoting a culture of self-care and support As a physician, I will strive to build a culture of self-care and support where physicians are empowered to ask for help and are supported to care for their own physical, mental, and social well-being. I will strive to:
Value physician health and wellness and promote a professional culture that recognizes, supports, and responds effectively to your needs and colleagues in-need
Cultivate an environment of physical and psychological safety, conducive to challenging the status quo, as well as encouraging help-seeking behaviours, without fear of negative reprisal
Recognize that both individual and system-level barriers contribute to health and wellness-related issues and advocate for cultural and systemic change to remove barriers 3. Commitment to promoting a culture of leadership and mentorship As a physician, I will strive to foster a culture of leadership and mentorship across the career life cycle. I will strive to:
Encourage and enable opportunities and participation in leadership roles across all levels of training, practice, and health system delivery
Promote and enable formal and informal mentorship opportunities and leadership training across all levels of training and practice
Value the exchange of knowledge and experience and encourage reflective relationships (bi-directional) across all levels of training and practice 4. Commitment to promoting a culture of inquiry and reflection As a physician, I will strive to foster a culture of inquiry and reflection that values and enables reflective practice, individually and collectively. I will strive to:
Value and enable collective inquiry and self-reflection to effect meaningful change
Foster curiosity and exploration to identify strengths and capabilities of teams and health systems to generate new possibilities for action
Cultivate strong connections and relationships between, and meaningful interactions with, colleagues 5. Commitment to promoting a culture of quality As a physician, I will strive to foster a culture of quality and quality improvement. I will strive to:
Foster intra- and inter-professional collaborations and promote collaborative models of care
Provide high quality patient care and have a view to continuous improvement at the practice and system level, and commit to developing and applying the skills and techniques of quality improvement
Understand that quality improvement is a critical and life-long part of education and practice; participate in maintaining professional standards in myself and my colleagues
Engage patients, families, and caregivers in the process of improvement 6. Commitment to valuing a culture of diversity As a physician, I will strive to foster a community of practitioners that reflects the diversity of the communities they serve. I will strive to:
Promote diversity within the profession to be receptive and responsive to the evolving (physical, emotional, cultural, socioeconomic) needs of our patient populations
Foster a training and practice environment where diverse and unique perspectives, across generations, cultures and abilities, are heard and appreciated
Foster diversity in leadership across the full spectrum of leadership roles within the profession and health systems
Value the importance of these perspectives within the medical profession, even when they may not be my own patients, families, and caregivers in the process of improvement cma.ca/medicalprofessionalism
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Federal Genetic Non-Discrimination Act

https://policybase.cma.ca/en/permalink/policy13707
Date
2017-08-23
Topics
Ethics and medical professionalism
Health care and patient safety
Resolution
GC17-09
The Canadian Medical Association urges provincial and territorial governments to support the Federal Genetic Non-Discrimination Act (Bill S-201) by enacting corresponding legislation that echoes privacy protection.
Policy Type
Policy resolution
Date
2017-08-23
Topics
Ethics and medical professionalism
Health care and patient safety
Resolution
GC17-09
The Canadian Medical Association urges provincial and territorial governments to support the Federal Genetic Non-Discrimination Act (Bill S-201) by enacting corresponding legislation that echoes privacy protection.
Text
The Canadian Medical Association urges provincial and territorial governments to support the Federal Genetic Non-Discrimination Act (Bill S-201) by enacting corresponding legislation that echoes privacy protection.
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Victims of human trafficking

https://policybase.cma.ca/en/permalink/policy13708
Date
2017-08-23
Topics
Ethics and medical professionalism
Health care and patient safety
Resolution
GC17-17
The Canadian Medical Association supports increased physician awareness and education in identifying and supporting victims of human trafficking.
Policy Type
Policy resolution
Date
2017-08-23
Topics
Ethics and medical professionalism
Health care and patient safety
Resolution
GC17-17
The Canadian Medical Association supports increased physician awareness and education in identifying and supporting victims of human trafficking.
Text
The Canadian Medical Association supports increased physician awareness and education in identifying and supporting victims of human trafficking.
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Legislative changes to protect migrants and refugees

https://policybase.cma.ca/en/permalink/policy13720
Date
2017-08-23
Topics
Ethics and medical professionalism
Health care and patient safety
Resolution
GC17-13
The Canadian Medical Association promotes legislative changes to protect migrants and refugees from arbitrary and indefinite detention in jails and jail-like facilities in Canada
Policy Type
Policy resolution
Date
2017-08-23
Topics
Ethics and medical professionalism
Health care and patient safety
Resolution
GC17-13
The Canadian Medical Association promotes legislative changes to protect migrants and refugees from arbitrary and indefinite detention in jails and jail-like facilities in Canada
Text
The Canadian Medical Association promotes legislative changes to protect migrants and refugees from arbitrary and indefinite detention in jails and jail-like facilities in Canada
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Direct-to-consumer genetic testing

https://policybase.cma.ca/en/permalink/policy13696
Date
2017-05-27
Topics
Ethics and medical professionalism
CMA Policy PD17-05 Direct-to-Consumer Genetic Testing Some direct-to-consumer (DTC) genetic tests
  2 documents  
Policy Type
Policy document
Date
2017-05-27
Topics
Ethics and medical professionalism
Text
While genetic testing is typically provided in a clinical setting through the referral of a health care professional (HCP) or a regulated research project, a number of private companies now offer genetic testing services directly to consumers over the Internet. Direct-to-consumer (DTC) genetic testing is distinguished from clinical genetic testing ordered by a HCP in several ways: 1. DTC genetic tests are not regulated in Canada. The clinical validity and reliability of these tests varies widely, but DTC genetic testing companies make them available to consumers without distinguishing between those that may be useful to the management of one's health, those that have some limited health value, and those that are meant purely for recreational use. 2. Many of the tests advertised and sold via the Internet have not undergone clinical evaluation. 3. Marketing materials for these tests often imply that they have health value, but the terms of reference of some of the companies that offer them state that the tests are to be used for recreational purposes and many vendors do not guarantee the validity or reliability of their results. 4. Resale of personal health information and/or DNA samples is often an important part of the business model of companies that offer DTC genetic testing, raising concerns about patient privacy and insufficient or unclear disclosure of privacy terms. 5. Unlike genetic tests ordered and administered by HCPs, DTC genetic tests are ordered directly by the consumer, who most often has not consulted with a HCP as part of a clinical assessment, and the testing may not be clinically indicated. Some companies only agree to do testing if it has been ordered by a physician, but they will provide a phone conversation with one of their physicians (not based in Canada) if a consumer does not have access to a physician. When the testing is ordered by a physician, it will sometimes be ordered by the patient's personal physician. In such cases, this does not truly represent DTC genetic testing. 6. Without appropriate pre- and post-testing counselling by a HCP, consumers are left to interpret and act upon their results on their own. They might suffer psychological consequences if they overestimate their disease risk as a result of DTC. 7. As access to DTC genetic testing increases, Canadian HCPs (specifically primary care physicians) are faced with the challenge of appropriately counselling patients when they receive their test results. However, few physicians feel they have the necessary training and knowledge in genomics to provide adequate care in this area. Furthermore, these tests may have no clinical indication, produce uncertain results with ambiguous clinical applicability and have tenuous legal status, but they can potentially influence a patient's sense of well-being. GENERAL PRINCIPLES 1. The CMA is concerned with understanding, raising awareness of, and mitigating potential patient and societal harms that may arise from DTC genetic testing. 2. The CMA emphasizes the importance of the principle of protection of patient privacy and supports the right of Canadians to understand how their health information is being used by third parties, including insurance and DTC genetic testing companies. 3. The CMA believes that patients have the right to be fully informed about what a DTC genetic test can and cannot say about their health and that the scientific evidence on which a test is based should be clearly stated and easy to understand. 4. The CMA recommends regulation of both DTC genetic tests and the marketing of these tests through the development of a national framework that would include a combination of government and industry regulation with input from medical experts. 5. The CMA believes that unnecessary genetic testing should be avoided to ensure more appropriate use of health care resources. Even if a consumer pays directly for testing, any test result, even an incidental finding from a DTC genetic testing laboratory without clinical certification, may trigger a cascade of clinical investigations and lead to further unnecessary testing and inappropriate use of resources. 6. The CMA supports educational initiatives on DTC genetic testing for physicians practising in all specialties so that they can respond to patient queries about these tests and, when necessary, their results. PROTECTION OF PRIVACY * Privacy and confidentiality of patients' personal health information must be maintained. * Before a patient submits a sample to a DTC genetic testing company, the company should obtain express informed consent from the patient concerning the way in which their data will be collected and used, who will have access to the data and the interpreted results, what safeguards are in place to protect it, and how it will be disposed of in the event of a company/laboratory closure. * Patients have the right to a clear understanding of who owns the sample and the generated data, in particular whether their data will be sold or shared with third parties. If resale of personal health information and/or DNA samples is an important part of the business model of DTC-GC companies, this should be stated explicitly in terms understandable by the consumer. * DTC-GC companies that solicit Canadian consumers should be subject to the Personal Information Protection and Electronic Documents Act (PIPEDA). * The CMA encourages physicians to become familiar with privacy legislation affecting the use of DTC genetic tests by insurance companies and employers. ROLE OF PHYSICIAN * Physicians should generally avoid using DTC genetic tests unless they have been clinically and empirically validated. * Physicians who are presented with a patient's DTC genetic test results should take the following actions: o They should explain to their patient the limits of the specific test the patient used. If a physician does not know this information he/she should discuss with the patient the fact that DTC genetic test results are not necessarily obtained from an accredited laboratory or interpreted in a standardized way; therefore, the validity and clinical utility of the results may be highly variable for certain tests. o They should disclose their level of comfort in providing an accurate interpretation of the results. o They should assess whether the test results are clinically significant in the context of that patient's symptoms, signs, medical history and family history before deciding whether it is appropriate to formally consult a specialty provider such as a medical geneticist. o If a physician wishes to use the results of a test in their clinical assessment, they should ensure that the laboratory performing the test guarantees analytical reliability and validity. * Physicians should adhere to the following principles related to medically indicated genetic testing: o Physicians should generally avoid recommending and/or ordering DTC genetic tests if they do not have a clear understanding of the validity and limitations of the tests they select. o Physicians should follow best practice guidelines and make use of clinically valid tests, accredited laboratories and specialist referral(s), when appropriate. o Physicians must obtain informed consent from the patient before ordering any genetic test, assist the patient in interpreting the results, support the individual with respect to psychological and biological implications of the results, and refer the patient to appropriate resources. o Many genetic tests require pre- and post-test counselling, particularly (but not limited to) tests involving children, tests establishing carrier status or tests considered to be predictive. If a provider decides to order such testing, they also accept the responsibility for facilitating access to pre- and post-test counselling. ROLE OF GOVERNMENT * The CMA calls on the government to enact regulations based on Bill S-201 (An Act to prohibit and prevent genetic discrimination) that establish clear boundaries for the marketing, distribution, accreditation and third-party use of DTC genetic tests. * The CMA believes that it is the government's responsibility to ensure that Canadians are only offered reliable, accurate and medically relevant genetic testing services. * The CMA encourages the development of national standards for the reliability and validity of DTC genetic tests by relevant federal government agencies, in conjunction with interested stakeholders (e.g., geneticists and laboratory scientists, genetic counsellors, physicians, private and public laboratories, industry, and patient groups). * The CMA encourages the government to enact standards that can keep pace with the rapid development of technological innovation in genetic testing and genetics more generally. * The CMA encourages the government to enact standards that hold companies accountable for being transparent about their uses of data/DNA and the potential resale of such material. * The CMA encourages the government to enact standards that mandate that the type of testing (e.g., single-nucleotide polymorphism [SNP] analysis, targeted mutation testing, sequencing) be clearly labelled and that a clear explanation be provided of the type of information that can (or cannot) be obtained from such testing. SYSTEMS INFRASTRUCTURE * Genetic testing and the interpretation of the results of such testing are highly technical and complex processes. For this reason, the CMA believes that clinical testing laboratories that are used by DTC genetic testing companies must be accredited if the companies are to claim that their testing is valid. * The CMA believes that scientific evidence describing the validity and utility of a DTC genetic test should be clearly stated in language that is easy to understand. This information should include a clear statement of what a test can or cannot diagnose or infer, and statements about the validity of a specific test should be supported with references. A company that does not guarantee the reliability or validity of its test should not be allowed to make any (implicit or explicit) claims about the potential medical utility of its test and/or its potential to improve health. EDUCATION AND PUBLIC ENGAGEMENT * The CMA supports public education initiatives to increase patient awareness of the potential implications and limitations of DTC genetic testing for health purposes. The CMA supports increased genetics training for physicians to help them to further appreciate the complex issues involved and keep pace with the rapid changes in molecular genetics. Such training would support physicians to counsel patients who seek follow-up for their DTC genetic test results. Approved by the CMA Board of Directors May 2017 See also Background to CMA Policy on Direct-to-Consumer Genetic Testing BACKGROUND TO CMA POLICY DIRECT-TO-CONSUMER GENETIC TESTING See also CMA Policy PD17-05 Direct-to-Consumer Genetic Testing Some direct-to-consumer (DTC) genetic tests, such as "compatibility testing" for online dating, are purely recreational. Other tests, however, are marketed both as being for recreational use and as producing results that are useful to the management of one's health. This document concerns this second category of tests. The characteristics of these tests differ widely, and some of the companies that offer them clearly state that they do not guarantee the validity and reliability of their tests. As of January 2016, 246 companies offered some form of DNA test online.1 Many DTC genetic tests have started to penetrate the Canadian market, especially after the U.S. Food and Drug Administration issued a warning letter instructing some companies in the U.S. to cease providing unreliable health information that could potentially lead consumers to make misinformed decisions about their health, which caused some of these companies to seek out alternative markets.2 The increasing availability of DTC genetic tests in Canada presents several challenges, as the predictive value of most of the DTC genetic tests currently on the market is very low. Moreover, there is no standard model for the delivery and interpretation of the results of these tests. Greater regulatory guidance and protection is needed to ensure that individuals who choose to submit samples to DTC genetic testing companies are not adversely affected by information that is not necessarily predictive or even accurate. Survey research indicates that the general public is overwhelmingly interested in genetic testing technologies.3 Researchers predict that an increasing number of individuals will use DTC genetic testing as testing technologies continue to become more affordable and efficient.3 Since genetic issues tend to cross medical specialties, it often falls on primary care physicians to understand the role of genetics in clinical care.4 In fact, genetic testing companies often direct patients to discuss their results with their primary care physician.5 Patients not only seek out their primary care providers to discuss their genetic test results and obtain appropriate follow-up but also expect them to be able to answer questions about personal genome test results.6 Despite these expectations, health professionals' awareness and knowledge of DTC genetic tests remains low.7 Although DTC genetic tests are marketed under similar names, the genetic tests available in Canada have very different characteristics. Three types of tests are offered: (1) single-nucleotide polymorphism (SNPs) analysis, which assesses an individual's risk for common multifactorial diseases (e.g., diabetes, myocardial infarction), (2) targeted mutation analysis and (3) sequencing. Some are ordered directly by the consumer while others are pre-ordered by the consumer and the order is co-signed by a physician (the patient's physician or a physician who has never met the patient and whose services are provided by the company). SNP testing assesses for a number of genetic variants that are common in the general population and that have been identified in association studies to modify (increase or decrease) the risk of a given disease. Some DTC genetic testing companies explicitly state in their terms of service that they do not guarantee the accuracy or reliability of the test. This is due in part to deficiencies in the science underlying the tests and their interpretation. For example, the interpretation of SNPs analysis for common multifactorial diseases can only be as good as the science behind it. The scientific community has a long way to go before it will have identified all of the significant genetic risk factors and protective factors for these diseases. Because of this, a given consumer could receive greatly divergent risk interpretations.3 In the case of targeted mutation analysis and sequencing, the specific panels offered by DTC genetic testing companies may not include all of the clinically relevant genes and mutations. This could result in a consumer receiving harmful false reassurance. Test results may include information on genetic changes that are only weakly associated with disease, leading to undue anxiety. As such, the clinical and health value of DTC genetic testing continues to be debated despite consumer uptake of, and enthusiasm for, DTC genetic testing offered online. Currently, most DTC genetic testing services exist in regulatory limbo, benefiting from laws that tend to lag behind technological innovation. Questions about access to the information yielded by these tests have emerged as a particular concern. For some companies, an important part of the business model is to sell consumers' DNA along with the clinical information that the consumers provide via their interactive websites. Most Canadians are unaware of this: they pay for a test and do not expect that their data will later be sold. ISSUES ARISING IN CLINICAL CONTEXTS Studies have shown that physicians see a number of benefits with DTC genetic testing, but they also have concerns. The benefits physicians have identified include convenience, promotion of preventive medicine and the provision of personalized services.5 They are concerned about the reliability of test results, the provision of adequate information/counselling, patient anxiety if the results are misunderstood, inappropriateness of advertising, discrimination with respect to employment and insurance, the possible spread of beliefs such as genetic determinism, and the inappropriate disclosure of patients' genetic information.5 The following sections will address primary concerns identified by research and in practice. 1. Patient privacy Privacy is one of the top concerns of the general public about genetic testing.8 According to a 2010 report commissioned by the Office of the Privacy Commissioner of Canada, approximately 60% of patients indicated that privacy and discrimination fears would influence their decision to undergo genetic testing.9 The average Canadian consumer is not adequately informed that an important part of the business model of many DTC genetic testing companies is to build and sell their database of phenotypic information and DNA accumulated from their clients to third parties, such as biobanks or pharmaceutical companies. 1.1 Informed consent The increasing quantity, complexity and diversity of DTC genetic testing services pose challenges for informed consent because both specific and generic models do not meet ethical standards when applied to this type of service.10 Many companies bind their consumers to contracts that are activated once the website is viewed, a practice that challenges the adequacy of consent, as it is common for people to view a website without reading or even seeing its terms of reference.1 Consumers who present to genetic clinics tend not to question the validity of the results they have received from DTC genetic testing,11 which can be interpreted as an indication that consumers give their consent without reading or understanding the disclaimers made by the companies.11 Physicians are concerned that this lack of informed consent could compromise the confidentiality of personal health information, encourage requests for unnecessary medical tests and potentially cause distress to patients. 1.2 Insurance The insurance industry is of particular concern in the context of privacy and DTC genetic tests. A study of patients' perceptions of DTC genetic tests found that participants were concerned that genetic results could affect their health insurance premiums or lead to denial of coverage.12 Private insurance is fundamentally rooted in the practice of discriminating between clients on the basis of risk. While insurers have generally been entitled to request genetic information in the form of family history, to access medical files and to conduct medical tests,13 consumers have expressed the view that the rules governing access to genetic information should be stricter than for access to other forms of personal information.3 While there are studies that report cases of genetic discrimination, it is often unclear whether such treatment is perceived or actual.14. Thus, the consequences of genetic testing remain uncertain. Of particular concern is the potential for discrimination on the basis of results that may not be accurate and/or reliable. Although there is presently no evidence of widespread use of genetic testing by insurance companies,14experts agree that in the next 10 years public acceptance of the use of information from genetic testing will increase and it will become possible to more accurately interpret data from genetic tests (K. Boycott, J. Davies and K. Morin, CIHR Café Scientifique, unpublished remarks), threatening to alter the currently limited role that genetic testing plays in insurance company decision-making. Before policy-makers tackle the potential issues related to the use of DTC genetic testing, it is imperative that they start at ground level and explore options to regulate insurance companies' access to such tests. 2. Patient response 2.1 Interpretation of results and changes in behaviour Proponents of DTC genetic testing point to the potential for patients to make positive changes to their health as a result of learning about their genetic susceptibility to certain diseases. Findings of studies in this area, however, are inconsistent to date. While some studies have reported that there are some behaviour changes, it is important to keep in mind that early adopters of these services are likely to also be among those most motivated to make health-related changes.15 Recent evidence suggests the opposite response: the general population has a tendency to decrease healthy practices upon learning about a lower health risk, and they do not increase healthy practices when they learn that they have an increased health risk.15 Indeed, patients may make poorer health decisions if they are under the impression that they are not at risk for developing a certain disease; for example, they may avoid routine screening for breast or prostate cancer, or they may not follow exercise and diet advice. 16 These variations in behaviour can be largely attributed to the fact that there is an overarching risk that patients will misinterpret the data they receive from the testing companies. The problem with susceptibility tests in the context of DTC genetic testing is not only that the test results may cause psychological or physical harm but also that there is a possibility that patients will over-interpret their disease risk.10 Without expert guidance, the patient may not be able to evaluate their test results accurately enough to make informed health decisions.14 There is very little evidence to suggest that receipt of a DTC genetic test result produces sustained behavioural change.17 In fact, studies on psychological theories related to motivation do not consider disease risk information a useful tool for motivating patients to change their behaviour.15 Therefore, while receipt of DTC genetic test results may encourage patients to see their family physician and possibly undergo further consultation, the health care resources invested in interpreting results with limited clinical validity may not produce sustained behavioural changes, good or bad. 3. Resource allocation One of the stated goals of personalized medicine is to save health care systems money by facilitating the use of fewer but more effective treatments.18 However, greater demand for genetic testing, whether public or private, could produce the opposite effect: consumption of health care resources may increase as patients consult with their regular physician about results they obtained through a DTC company.16 Furthermore, physicians who are presented with DTC genetic test results by their patients have a legal and ethical obligation to do their due diligence and carry out a complete, clinically valid investigation, which may ultimately negate the cost savings that personalized medicine is expected to produce.16 Patients who participate in DTC genetic testing are likely to drive up the utilization of health care providers, as they seek out their primary care provider to discuss their results and they obtain follow-up care from a genetic counsellor.19,5 At least one study has suggested that there is an expectation that physicians will help patients to interpret their DTC genetic test results, and DTC genetic testing companies frequently direct patients to discuss their results with their physicians before acting upon their testing information.5 Consequently, the responsibility falls on primary care providers to discuss this technology with their patients.5 Primary care providers, however, believe that genetic specialists are the most appropriate providers of counselling for DTC genetic tests.14 While they acknowledge the benefits of DTC genetic tests, including the potential for test results to encourage patients to be more involved in their care and take responsibility for their health, they also agree that test results may encourage patients to seek unnecessary and potentially expensive follow-up tests.14 As a result, additional health care resources may be required to cope with the increased demand for medical follow-up.20 4. Physician education Although DTC genetic testing companies have been around since the early 2000s, levels of awareness among health care professionals vary, and knowledge and understanding of the services generally remain low.21 Research suggests that few physicians feel they have the necessary training and knowledge in genomics to provide adequate care in this area.17 A perceived lack of clinical utility appears to be a barrier to learning more about DTC genetic testing.6 Increased genetics training and awareness may allow physicians to better appreciate the complex issues involved and help them to better counsel patients who seek follow-up for their DTC genetic test results. 4.1 Topics that physicians want to learn about Most physicians are concerned about the privacy implications of DTC genetic testing, specifically health insurance and employment discrimination, which may affect their patients who present with a DTC genetic test.5 Therefore, important discussion points to include in a physician education program would be information on the risks of insurance and employment discrimination, legislation currently in place to protect against genetic discrimination, and guidelines for managing risk.6 Given the ease with which patients can access DTC genetic testing, it is essential to provide health professionals with appropriate education on the potential benefits and risks of DTC genetic testing and help them develop an approach to interpreting the results of such testing, so that they can protect their patients from harm and arrange follow-up appropriately.19 5. Legislative landscape in Canada Before May 2017, Canada did not have a law to specifically protect against genetic discrimination. Existing human rights and privacy law could only be ambiguously and tenuously applied to DTC genetic testing issues, including genetic discrimination and information collection, use and disclosure.14 The laws that regulate medical devices, such as the Food and Drugs Act, did not clearly apply in the context of DTC genetic tests either,2 because consumers are not purchasing genetic testing kits but rather they are purchasing testing services, which fall outside the scope of that legislation.22 As a result, there was limited evidence to form the regulations necessary to ensure the validity and utility of these tests. Fortunately, on May 4, 2017, Bill S-201 (hereinafter termed S-201), An Act to prohibit and prevent genetic discrimination,23 received Royal Assent and will soon become law. S-201 provides a basis for the creation of regulations concerning the validity and utility of DTC genetic tests. The bill prohibits the requirement that an individual submit to genetic testing or disclose the results of genetic tests in order to receive goods or services or in order to enter into or continue a contract or agreement, and it prohibits submission to genetic testing or disclosure of test results from being used as the basis of any specific conditions in a contract or agreement. S-201 amends the Canada Labour Code to protect employees from being required to undergo or disclose the results of genetic testing and amends the Canadian Human Rights Act to prohibit discrimination on the grounds of genetic characteristics.21 Legislation at a provincial level, however, may still be required. Private Member's Bill 127, An Act to amend the Human Rights Code with respect to genetic characteristics,24 was presented to the Legislative Assembly of the Province of Ontario in 2013 but did not move past the first reading. Federal and provincial privacy legislation (such as the federal Personal Information Protection and Electronic Documents Act, or PIPEDA) also plays a role in protecting against genetic discrimination by requiring an individual to consent to the collection, use or disclosure of personal information.25 Currently, the Office of the Privacy Commissioner of Canada does not support amending the Privacy Act or PIPEDA, on the grounds that these laws sufficiently apply to genetic information.23 While this legislative framework might provide some protection against genetic discrimination, there is a lack of clarity as to whether it strikes the appropriate balance between consumers' rights to privacy and the interests of insurers. Furthermore, the courts have yet to provide an opinion regarding the constitutionality of S-201 or to assist in the interpretation of privacy legislation in the context of DTC testing, because of the novelty of the service. It is uncertain if and how Bill S-201 will inform future regulations placed upon employers and insurers. Significant gaps in the legislative framework remain; in particular, privacy protection in Canada has yet to counterbalance the lack of consumer protection in Canadian insurance laws.22 While existing legislation may offer some protection, the absence of legal precedents creates uncertainty and leaves consumers to engage in DTC testing services at their own risk. May 2017 See also CMA Policy PD17-05 Direct-to-Consumer Genetic Testing REFERENCES 1 Phillips AM. Only a click away - DTC genetics for ancestry, health, love ... and more: a view of the business and regulatory landscape. Appl Transl Genom 2016;8:16-22. 2 US Food and Drug Administration. Warning letter. Silver Spring (MD): The Administration; 22 Nov 2013. Available: www.fda.gov/iceci/enforcementactions/warningletters/2013/ucm376296.htm (accessed 2017 May 19). 3 Caulfield T. Direct-to-consumer testing: if consumers are not anxious, why are policy makers? Hum Genet 2011;130:23-5. 4 Delaney SK, Christman MF. Direct-to-consumer genetic testing: perspectives on its value in healthcare. Clin Pharmacol Ther 2016; 99(2):146-8. 5 Powell KP, Cogswell WA, Christianson CA, et al. Primary care physicians' awareness, experience and opinions of direct-to-consumer genetic testing. J Genet Couns 2012;21(1):113-26. 6 Powell KP, Christianson CA, Cogswell WA, et al. Educational needs of primary care physicians regarding direct-to-consumer genetic testing. J Genet Couns 2012;21(3):469-78. 7 Jackson L, Goldsmith L, Skirton H. Guidance for patients considering direct-to-consumer genetic testing and health professionals involved in their care: development of a practical decision tool. Fam Pract 2014;31(3): 341-8. 8 Caulfield T, McGuire AL. Direct-to-consumer genetic testing: perception, problems, and policy responses. Annu Rev Med 2012; 63:23-33. 9 Office of the Privacy Commissioner of Canada. Analysis of privacy policies and practices of direct-to-consumer genetic testing companies: private sector databanks and privacy protection norms. Ottawa: The Office; March 2010. p. 6. 10 Bunnik EM, Janssens AC, Schermer MH. Informed consent in direct-to-consumer personal genome testing: the outline of a model between specific and generic consent. Bioethics 2014;28(7):343-51. 11 Brett GR, Metcalfe SA, Amor DJ, et al. An exploration of genetic health professionals' experience with direct-to-consumer genetic testing in their clinical practice. Eur J Hum Genet 2012;20(8):825-30. 12 Wasson K, Sanders TN, Hogan NS, Cherny S, Helzlsouer KJ. Primary care patients' views and decisions about, experience of and reactions to direct-to-consumer genetic testing: a longitudinal study. J Community Genet. 2013;4:495-505 13 Lemmens T, Pullman D, Rodal R. Revisiting genetic discrimination issues in 2010: policy options for Canada [PowerPoint presentation]. Ottawa: Genome Canada; 15 June 2010. Available: www.genomecanada.ca/sites/default/files/pdf/en/gps_speakers_presentation/trudo-lemmens-daryl-pullman.pdf 14 Zinatelli F. Industry Code: Genetic testing information for insurance underwriting [Internet]. Toronto, ON: CLHIA; 2017 Jan 11. Available from https://www.clhia.ca/domino/html/clhia/CLHIA_LP4W_LND_Webstation.nsf/page/E79687482615DFA485257D5D00682400/$file/Industry%20Code%20Genetic%20Testing%20-%20Updated.pdf 15 Adams SD, Evans JP, Aylsworth AS. Direct-to-consumer genomic testing offers little clinical utility but appears to cause minimal harm. N C Med J 2013;74(6): 494-8. 16 Ram S, Russell B, Gubb M, et al. General practitioner attitudes to direct-to-consumer genetic testing in New Zealand. N Z Med J 2012;125(1364):14-26. 17 Caulfield T. Obesity genes, personalized medicine and public health policy. Curr Obes Rep 2015;4(3):319-23. 18 Caulfield T, Zarzeczny A. Defining 'medical necessity' in an age of personalised medicine: a view from Canada. Bioessays 2014;36(9):813-7. 19 Bloss CS, Schork NJ, Topol EJ. Direct-to-consumer pharmacogenomic testing is associated with increased physician utilisation. J Med Genet 2014;51(2):83-9. 20 Daly AK. Direct-to-consumer pharmacogenomic testing assessed in a US-based study. J R Coll Physicans Edinb 2014;44:212-3. 21 Jackson L, Goldsmith L, Skirton H. Guidance for patients considering direct-to-consumer genetic testing and health professionals involved in their care: development of a practical decision tool. Fam Pract 2014;31(3):341-8. 22 Mykitiuk R. Caveat emptor: direct-to-consumer supply and advertising of genetic testing. Clin Invest Med 2004;27(1):23-32. 23Parliament of Canada. Legislative summary of Bill S-201: An Act to prohibit and prevent genetic discrimination. Ottawa: Parliament of Canada; 2016 24 Parliament of Canada. Bill 127: An Act to amend the Human Rights Code with respect to genetic characteristics, 2nd Sess, 40th Leg, Ontario, 2013. 25 Personal Information Protection and Electronic Document Act (PIPEDA), S.C. 2000, C.5, para 5(3).
Documents
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Medical assistance in dying

https://policybase.cma.ca/en/permalink/policy13698
Date
2017-05-27
Topics
Ethics and medical professionalism
  1 document  
Policy Type
Policy document
Date
2017-05-27
Replaces
EUTHANASIA AND ASSISTED DEATH (UPDATE 2014)
Topics
Ethics and medical professionalism
Text
The legalization of medical assistance in dying (MAiD) raises a host of complex ethical and practical challenges that have implications for both policy and practice. The CMA supports maintaining the balance between three equally legitimate considerations: respecting decisional autonomy for those eligible Canadians who are seeking access, protecting vulnerable persons through careful attention to safeguards, and creating an environment in which practitioners are able to adhere to their moral commitments. Recognizing the educational, legislative, regulatory and practice changes that will result, the CMA recommends that legislative and regulatory processes be coordinated at the federal and provincial/territorial levels to consistently guide health systems, practitioners and patients. To that end, the CMA calls for rigorous information gathering at all levels and for experience with and research on the impacts of this new practice to be reported as it unfolds. The CMA encourages medical schools to incorporate reflective training opportunities at the undergraduate and postgraduate levels that address all aspects of medical practice that might be affected by this new intervention. Further, CMA recognizes the opportunity that exists for all health systems and practitioners to facilitate effective patient access to information about all end-of-life care options. The CMA acknowledges the importance of understanding that other acts within the realm of end-of-life care are distinct from the practice of medical assistance in dying. Further, the provision of specific assessments for eligibility to access medical assistance in dying is a distinct service unrelated to consultations for general palliative end-of-life care. It is important that physicians be aware of this distinction and the relationship between legal, medical and ethical norms with respect to medical assistance in dying. The judicial and legislative branches of government have made changes to Canadian law in this area. Society has placed assistance in dying within the realm of regulated medical practitioners. Physicians' ethical norms and duties, arising from long-standing traditions that entail moral commitments to preserve and protect life, have not changed. The CMA supports the right of all physicians to follow their conscience when deciding whether to provide or otherwise participate in assistance in dying as per the legislation governing medical assistance in dying. The CMA equally supports conscientious participation in and conscientious objection to assistance in dying by physicians. SCOPE OF POLICY This policy aims to provide guidance on key considerations in a way that is consistent with a physician's ethical, professional and legal obligations. Physicians should be aware of the federal and provincial laws in the jurisdiction in which they practise, the standards and expectations outlined by their respective regulatory authority, advice from the Canadian Medical Protective Association as well as the policies and procedures of the setting(s) in which they practise (e.g., regional health authority or hospital). RELEVANT FOUNDATIONAL CONSIDERATIONS The following considerations underpin the CMA's position on what ought to constitute the basis of any evolving legislation, regulation or guideline on the implementation of medical assistance in dying. These considerations are not ranked according to priority or importance. As with any foundational considerations, they provide a starting point for ethical reflection, and their application requires further thought and interpretation when conflicts arise. 1. Respect for autonomy: The CMA upholds the importance of respect for decisional autonomy by competent patients - such persons are free to make informed choices and autonomous decisions about their bodily integrity, their personal aims and their care that are consistent with their personal values and beliefs. CMA also asserts that persons have inherent dignity regardless of their circumstances. Services ought to be delivered, and processes and treatments ought to be applied, in ways that strive to preserve and enhance dignity. End-of-life care strives to maintain the integrity of personhood even as bodily functions deteriorate in advance of death. 2. Respect for vulnerability: In consideration of the importance of a patient's decision regarding medical assistance in dying, and the permanence of death if medical assistance in dying is chosen by a patient, the CMA believes that careful and non-judgmental exploration with patients of the reasons they are seeking assistance in dying is always warranted. Care in this regard assists physicians to fulfill the duty to ensure that conditions of vulnerability have been identified and addressed satisfactorily. Physicians should maintain diligent attention to identifying undue coercive influences on the patient. Legislation 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. 3. Respect for freedom of conscience: The CMA believes that physicians must be able to follow their conscience without discrimination when deciding whether or not to provide or participate in assistance in dying. The CMA supports physicians who, for reasons of moral commitments to patients and for any other reasons of conscience, will not participate in decisional guidance about, eligibility assessments for, or provision of medical assistance in dying. To enable physicians to adhere to such moral commitments without causing undue delay for patients pursuing this intervention, health systems will need to implement an easily accessible mechanism to which patients can have direct access. Further, the CMA believes that physicians' general employment or contract opportunities should not be influenced by their decisions to participate in, or not participate in, any or all aspects of medical assistance in dying with patients. The right of patients to seek medical assistance in dying does not compel individual physicians to provide it. Learners should be equally free to follow their conscience without risk to their evaluations and training advancement. 4. Accountability: Physicians providing or otherwise participating in assistance in dying must ensure they have the requisite training and the appropriate competencies, and the ability to assess a patient's decisional capacity or the ability to consult with a colleague to assess capacity in more complex situations. Physicians are expected to use appropriate medical judgment to make a determination of eligibility by (1) assessing the capacity of an adult to consent to the termination of life and (2) determining whether the patient has explored their options (and the putative impacts of any of the options). If the patient wishes to continue seeking medical assistance in dying, physicians are expected to use appropriate medical judgment to determine whether s/he meets the eligibility criteria as per the legislation governing medical assistance in dying. This ought to be a shared decision, and it should be made as part of a deliberative process in the context of the patient-physician relationship. The CMA encourages physicians to participate in accountability processes within their jurisdictions that ensure equitable access to all end-of-life options, including palliative and end-of-life care provided by skilled practitioners, in service of their patients' needs and values. To that end, the CMA believes that a federal oversight body and reporting regime should be established to ensure that all processes are followed. ADDITIONAL CONSIDERATIONS: PHYSICIAN DUTIES 5. Duty of non-abandonment: Physicians have an obligation to respond to a request for assistance in dying, regardless of how their moral commitment is expressed. Patients should never be abandoned and must always be supported by their physician and other members of their care team. The patient's physician ought to explore the reasons motivating the request and be sensitive to issues of culture and background throughout the dying process, regardless of the decisions the patient makes with respect to assistance in dying. There should be no undue delay in providing access to assistance in dying and all other end-of-life options, either from a clinical, system or facility perspective. For those who choose to provide assistance in dying, the duty of non-abandonment means that physicians have a duty to be available to patients during the act of ending their life. Physicians should be present or immediately available to manage any unexpected complications during the medical procedure, whether the chemical administration is done by the patient or by a regulated practitioner. 6. Duty to support interdisciplinary teams: The CMA advocates that physicians work within, and support other members of, interdisciplinary teams, pay close attention to the impacts of participation and non-participation in medical assistance in dying on their non-physician colleagues, and demonstrate solidarity with their team members as they navigate new legal and ethical territory together. 7. Duty to learners: The CMA recognizes the importance of unique moral considerations within learning environments. Learners are encouraged to reflect on their moral understanding of and views about assistance in dying and to seek a wide range of views and experiences from their patients and from their teachers and colleagues. ADDRESSING ADHERENCE TO MORAL COMMITMENTS CMA's position on conscientious participation and conscientious objection aims to harmonize two legitimate considerations: (1) effective patient access to a legally permissible medical service and (2) protection of physicians' freedom of conscience (or moral integrity) in a way that respects differences of conscience. a. The CMA believes that physicians are not obligated to fulfill a patient's request for assistance in dying but that all physicians are obligated to respond to a patient's request. This means that physicians who choose not to provide or otherwise participate in assistance in dying are: i. not required to provide it, or to otherwise participate in it, or to refer the patient to a physician or a medical administrator who will provide assistance in dying to the patient; but ii. are still required to fulfill their duty of non-abandonment by responding to a patient's request for assistance in dying. There should be no discrimination against a physician who chooses not to provide or otherwise participate in assistance in dying. b. The CMA believes that physicians are obligated to respond to a patient's request for assistance in dying in a timely fashion. This means that physicians are obligated to, regardless of their beliefs: i. provide the patient with complete information on all options available, including assistance in dying; ii. advise the patient on how to access any separate central information, counselling and referral service; and iii. transfer care of the patient to another physician or another institution, if the patient requests it, for the assessment and treatment of the patient's medical condition and exploration of relevant options. If relevant, such options may include palliative care, mental health care and, if the patient meets the eligibility criteria, provision of assistance in dying. The duty of non-abandonment still applies in all other aspects of the patient's care. c. Physicians are expected to make available relevant medical records (i.e., diagnosis, pathology, treatment and consults) to the physician accepting care of the patient when authorized by the patient to do so. d. Physicians are expected to act in good faith. They are expected to never abandon or discriminate against a patient requesting assistance in dying and to not impede or block access to a request for assistance in dying. Physicians should inform their patients of the fact and implications of their conscientious objection. No physician may require a patient to make a commitment not to seek assistance in dying as a condition of acceptance or retention of the patient. GLOSSARY WHAT MEDICAL ASSISTANCE IN DYING (MAID) ENCOMPASSES 1. Medical assistance in dying encompasses the assessment of a patient for eligibility for assistance in dying, deliberation with the patient, accompaniment of the patient through the process of deciding and, if so chosen by the patient, the provision of assistance in dying, which refers to: a. The administering by a medical practitioner or nurse of a substance to a person, at their request, that causes their death; or b. The prescribing or providing by a medical practitioner or nurse practitioner of a substance to a person, at their request, so that they may self-administer the substance and in doing so cause their death. 2. The Supreme Court of Canada in Carter used the terms physician-assisted dying and physician-assisted death. These terms refer to both of the following: a. Voluntary euthanasia, or physician-administered assistance in dying: The physician takes the final act that will end the individual's life via, usually, the intravenous administration of a lethal substance, at the request and with the consent of a patient b. Assisted suicide, or physician-prescribed, self-administered assistance in dying: An individual performs the final act to end their life by, usually, ingesting a lethal substance prescribed or provided by the physician, at the request and with the consent of the patient. 3. Other commonly used terms are hastened death, physician-administered hastened death and physician-prescribed, patient-administered hastened death. a. These terms are proposed to make a clear distinction between palliative care and other practices that hasten or bring about death, such as through the legitimate removal of life-sustaining interventions or via the provision or administration of chemicals. 4. Medical aid in dying has a distinct technical and legal meaning within Quebec, described in Bill 52, and is limited to physicians administering the lethal substance at the request of the individual. WHAT IT DOES NOT ENCOMPASS 1. Palliative care is an integrated approach that aims to relieve suffering and improve the quality of life of those facing life-limiting acute or chronic conditions by means of early identification, assessment and treatment of pain and other symptoms. 2. Continuous palliative sedation therapy1 refers to complete sedation, with the intent of rendering the patient unable to experience the environment, sensation or thoughts, until the patient dies naturally from the underlying illness. 3. Withdrawing or withholding treatment or treatment cessation refers to withdrawing or withholding life-prolonging treatment where it is no longer indicated or desired. 4. Voluntary refusal of hydration and nutrition is the conscious and active choice to refuse and to discontinue food and fluid, orally or parenterally, with the intention of hastening death. Approved by the CMA Board of Directors May 2017 1 Consensus statement on continuous palliative sedation therapy: www.chpca.net/media/343120/final_cpst_framework.pdf. ---------------
Documents
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Federal Monitoring and Reporting Regime for MAID

https://policybase.cma.ca/en/permalink/policy13853
Date
2017-05-15
Topics
Ethics and medical professionalism
  1 document  
Policy Type
Response to consultation
Date
2017-05-15
Topics
Ethics and medical professionalism
Text
Substantive recommendations 1. Protection and disclosure of the information This is a foundational component of any regulatory framework for both practitioners and patients/requestors. The CMA recommends placing greater emphasis on the protection of privacy by a. conducting a privacy impact assessment, with input from the Federal Privacy Commissioner (if that hasn't already been done). b. requiring, as part of the regulations, privacy/data sharing agreements in instances when o data is shared to meet the objectives outlined (p. 2); and o information collected under the framework will be made available to designated provincial and territorial government bodies for their use (p. 3). This is particularly important given that this involves the collection of identifiable (private) information about practitioners and patients/requestors. c. using aggregate data where applicable. d. providing greater detail on how the "Rigorous protection of all personal information (patient and practitioner) will be a paramount feature of the monitoring regime" - such detail is essential even in the preliminary stages of developing a monitoring and reporting system. 2. Further specification of what constitutes a request As is currently stated, what constitutes a request is not sufficiently defined, i.e., what constitutes a "written request"? Is any written request a request? What about for those who can't (or who can no longer) write? Further specifying what constitutes a request is especially important since the practitioner has to document the circumstances of the request in every instance, including where follow-up is required and a report has to be filed as part of a follow-up. 3. Timeframe A timeframe of 10 days to file a report is alarmingly short. It is commonly known that physicians already feel burdened by paperwork and it is highly likely that they would find it nearly impossible to meet this requirement. This could conceivably deter physicians from choosing to provide assistance in dying or participate in an assessment under threat of criminal sanction, potentially significantly impacting patient access. Procedural recommendations 4. Inegibility Information required for this category includes "results of the eligibility assessment". It should be required to explicitly include reasons why the patient/requestor was deemed ineligible. 5. MAiD self-administered a. The application of safeguards should be a specific category requiring reporting (and not simply used an example). b. To assess (in)consistency of emerging practices and the variability of provincial legislative or regulatory requirements, it would be worthwhile to require stating whether the practitioner was present during the self-administration. 6. Coroners and medical examiners When the monitoring regime (periodically) requests information from Chief Coroners or Medical Examiners: To assess (in)consistency of emerging practices and the variability of provincial legislative or regulatory requirements, it would be worthwhile to gather data on who completes the death certificate and the information included on the death certificate.
Documents
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Assisted death as defined by the Supreme Court of Canada is distinct from the practice of palliative care

https://policybase.cma.ca/en/permalink/policy11611
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-35
The Canadian Medical Association recognizes that the practice of assisted death as defined by the Supreme Court of Canada is distinct from the practice of palliative care.
Policy Type
Policy resolution
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-35
The Canadian Medical Association recognizes that the practice of assisted death as defined by the Supreme Court of Canada is distinct from the practice of palliative care.
Text
The Canadian Medical Association recognizes that the practice of assisted death as defined by the Supreme Court of Canada is distinct from the practice of palliative care.
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Mandatory training on organ donation for medical students and residents

https://policybase.cma.ca/en/permalink/policy11614
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-42
The Canadian Medical Association supports mandatory training on organ donation for medical students and residents at all Canadian medical schools.
Policy Type
Policy resolution
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-42
The Canadian Medical Association supports mandatory training on organ donation for medical students and residents at all Canadian medical schools.
Text
The Canadian Medical Association supports mandatory training on organ donation for medical students and residents at all Canadian medical schools.
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Public release of the Final Report of the External Panel on Options for a Legislative Response to Carter v. Canada

https://policybase.cma.ca/en/permalink/policy11633
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-36
The Canadian Medical Association calls for the unconditional public release of the Final Report of the External Panel on Options for a Legislative Response to Carter v. Canada upon its completion.
Policy Type
Policy resolution
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-36
The Canadian Medical Association calls for the unconditional public release of the Final Report of the External Panel on Options for a Legislative Response to Carter v. Canada upon its completion.
Text
The Canadian Medical Association calls for the unconditional public release of the Final Report of the External Panel on Options for a Legislative Response to Carter v. Canada upon its completion.
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Discussion of and access to a high- quality palliative approach to care

https://policybase.cma.ca/en/permalink/policy11639
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-41
The Canadian Medical Association will advocate that discussion of and access to a high- quality palliative approach to care be available to all Canadians, including those with life- limiting illnesses who are considering assisted death.
Policy Type
Policy resolution
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-41
The Canadian Medical Association will advocate that discussion of and access to a high- quality palliative approach to care be available to all Canadians, including those with life- limiting illnesses who are considering assisted death.
Text
The Canadian Medical Association will advocate that discussion of and access to a high- quality palliative approach to care be available to all Canadians, including those with life- limiting illnesses who are considering assisted death.
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Health care needs of individuals who identify themselves as lesbian, gay, bisexual, transgender and/or queer

https://policybase.cma.ca/en/permalink/policy11645
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-65
The Canadian Medical Association will promote the development of clinical tools to assist physicians and physicians-in-training improve their understanding of the specific health care needs of individuals who identify themselves as lesbian, gay, bisexual, transgender and/or queer.
Policy Type
Policy resolution
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-65
The Canadian Medical Association will promote the development of clinical tools to assist physicians and physicians-in-training improve their understanding of the specific health care needs of individuals who identify themselves as lesbian, gay, bisexual, transgender and/or queer.
Text
The Canadian Medical Association will promote the development of clinical tools to assist physicians and physicians-in-training improve their understanding of the specific health care needs of individuals who identify themselves as lesbian, gay, bisexual, transgender and/or queer.
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Creation of a specific criminal offence to assault health care providers performing their duties

https://policybase.cma.ca/en/permalink/policy11656
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-76
The Canadian Medical Association calls on the federal government to amend the Criminal Code by making it a specific criminal offence to assault health care providers performing their duties.
Policy Type
Policy resolution
Date
2015-08-26
Topics
Ethics and medical professionalism
Resolution
GC15-76
The Canadian Medical Association calls on the federal government to amend the Criminal Code by making it a specific criminal offence to assault health care providers performing their duties.
Text
The Canadian Medical Association calls on the federal government to amend the Criminal Code by making it a specific criminal offence to assault health care providers performing their duties.
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Preventing torture around the world

https://policybase.cma.ca/en/permalink/policy11658
Date
2015-08-26
Topics
Health care and patient safety
Ethics and medical professionalism
Resolution
GC15-79
The Canadian Medical Association urges the federal government to prevent torture around the world by allowing third party investigators, including medical professionals, to examine and review detention centres.
Policy Type
Policy resolution
Date
2015-08-26
Topics
Health care and patient safety
Ethics and medical professionalism
Resolution
GC15-79
The Canadian Medical Association urges the federal government to prevent torture around the world by allowing third party investigators, including medical professionals, to examine and review detention centres.
Text
The Canadian Medical Association urges the federal government to prevent torture around the world by allowing third party investigators, including medical professionals, to examine and review detention centres.
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Truth and Reconciliation Commission of Canada

https://policybase.cma.ca/en/permalink/policy11739
Date
2015-05-30
Topics
Ethics and medical professionalism
Population health/ health equity/ public health
Resolution
BD15-06-232
The Canadian Medical Association acknowledges the completion of the important work of the Truth and Reconciliation Commission of Canada and the importance of recognizing and not forgetting the terrible impact that the residential school system has had and, as a consequence of ongoing intergenerational trauma, continues to have on the health of many First Nations, Inuit and Metis People of Canada.
Policy Type
Policy resolution
Date
2015-05-30
Topics
Ethics and medical professionalism
Population health/ health equity/ public health
Resolution
BD15-06-232
The Canadian Medical Association acknowledges the completion of the important work of the Truth and Reconciliation Commission of Canada and the importance of recognizing and not forgetting the terrible impact that the residential school system has had and, as a consequence of ongoing intergenerational trauma, continues to have on the health of many First Nations, Inuit and Metis People of Canada.
Text
The Canadian Medical Association acknowledges the completion of the important work of the Truth and Reconciliation Commission of Canada and the importance of recognizing and not forgetting the terrible impact that the residential school system has had and, as a consequence of ongoing intergenerational trauma, continues to have on the health of many First Nations, Inuit and Metis People of Canada.
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