Inherent in all health care professional Codes of Ethics is the duty to provide care to patients and to relieve suffering whenever possible. However, this duty does not exist in a vacuum, and depends on the provision of goods and services referred to as reciprocal obligations, which must be provided by governments, health care institutions and other relevant bodies and agencies. The obligation of government and society to physicians can be seen as comparable to the obligations of physicians to their patients.
The recent experience of Canadian physicians during the SARS epidemic in Toronto has heightened the sensitivities of the medical profession to several issues that arose during the course of dealing with that illness. Many of the lessons learned (and the unanswered questions that arose) also apply to the looming threat of an avian flu (or other) pandemic. Canadian physicians may be in a relatively unique position to consider these issues given their experience and insight.
The intent of this working paper is to highlight the ethical issues of greatest concern to practicing Canadian physicians which must be considered during a pandemic. In order to address these issues before they arise, the CMA presents this paper for consideration by individual physicians, physician organizations, governments, policy makers and interested bodies and stakeholders. Although many of the principles and concepts could readily be applied to other health care workers, the focus of this paper will be on physicians.
Policies regarding physicians in training, including medical students and residents, should be clarified in advance by the relevant bodies involved in their oversight and training. Issues of concern would include the responsibilities of trainees to provide care during a pandemic and the potential effect of such an outbreak on their education and training.
A. Physician obligations during a pandemic
The professional obligations of physicians are well spelled out in the CMA Code of Ethics and other documents and publications and are not the main focus of this paper. However, they will be reviewed and discussed as follows.
Several important principles of medical ethics will be of particular relevance in considering this issue. Physicians have an obligation to be beneficent to their patients and to consider what is in the patient's best interest. According to the first paragraph of the CMA Code of Ethics (2004), "Consider first the well-being of the patient".
Traditionally, physicians have also respected the principle of altruism, whereby they set aside concern for their own health and well-being in order to serve their patients. While this has often manifested itself primarily as long hours away from home and family, and a benign neglect of personal health issues, at times more drastic sacrifices have been required. During previous pandemics, many physicians have served selflessly in the public interest, often at great risk to their own well-being.
The principle of justice requires physicians to consider what is owed to whom and why, including what resources are needed, and how these resources would best be employed during a pandemic. These resources might include physician services but could also include access to vaccines and medications, as well as access to equipment such as ventilators or to a bed in the intensive care unit. According to paragraph 43 of the CMA Code of Ethics, physicians have an obligation to "Recognize the responsibility of physicians to promote equitable access to health care resources".
In addition, physicians can reasonably be expected to participate in the process of planning for a pandemic or other medical disaster. According to paragraph 42 of the CMA Code of Ethics, physicians should "Recognize the profession's responsibility to society in matters relating to public health, health education, environmental protection, legislation affecting the health and well-being of the community and the need for testimony at judicial proceedings". This responsibility could reasonably be seen to apply both to individual physicians as well as the various bodies and organizations that represent them.
Physicians also have an ethical obligation to recognize their limitations and the extent of the services they are able to provide. During a pandemic, physicians may be asked to assume roles or responsibilities with which they are not comfortable, nor prepared. Paragraph 15 of the CMA Code of Ethics reminds physicians to "Recognize your limitations and, when indicated, recommend or seek additional opinions or services".
However, physicians have moral rights as well as obligations. The concept of personal autonomy allows physicians some discretion in determining where, how and when they will practice medicine. They also have an obligation to safeguard their own health. As stated in paragraph 10 of the CMA Code of Ethics, physicians should "Promote and maintain your own health and well-being".
The SARS epidemic has served to reopen the ethical debate. Health care practitioners have been forced to reconsider their obligations during a pandemic, including whether they must provide care to all those in need regardless of the level of personal risk. As well, they have been re-examining the obligation of governments and others to provide reciprocal services to physicians, and the relationship between these obligations.
B. Reciprocal obligations towards physicians
While there has been much debate historically (and especially more recently) about the ethical obligations of physicians towards their patients and society in general, the consideration of reciprocal obligations towards physicians is a relatively recent phenomenon.
During the SARS epidemic, a large number of Canadian physicians unselfishly volunteered to assist their colleagues in trying to bring the epidemic under control. They did so, in many cases, in spite of significant personal risk, and with very little information about the nature of the illness, particularly early in the course of the outbreak. Retrospective analysis has cast significant doubt and concern on the amount of support and assistance provided to physicians during the crisis. Communication and infrastructure support was poor at best. Equipment was often lacking and not always up to standard when it was available. Psychological support and counselling was not readily available at the point of care, nor was financial compensation for those who missed work due to illness or quarantine. Although the Ontario government did provide retrospective compensation for many physicians whose practices were affected by the outbreak, the issue was addressed late, and not at all in some cases.
It is clear that Canadian physicians have learned greatly from this experience. The likelihood of individuals again volunteering "blindly" has been reduced to the point where it may never happen again. There are expectations that certain conditions and obligations will be met in order to optimize patient care and outcomes and to protect health care workers and their families.
Because physicians and other health care providers will be expected to put themselves directly in harm's way, and to bear a disproportionate burden of the personal hardships associated with a pandemic, the argument has been made that society has a reciprocal obligation to support and compensate these individuals.
According to the University of Toronto Joint Centre for Bioethics report We stand on guard for thee, "(The substantive value of) reciprocity requires that society support those who face a disproportionate burden in protecting the public good, and take steps to minimize burdens as much as possible. Measures to protect the public good are likely to impose a disproportionate burden on health care workers, patients and their families."
Therefore, in order to provide adequate care for patients, the reciprocal obligation to physicians requires providing some or all of the following:
Prior to a pandemic
- Physicians and the organizations that represent them should be more involved in planning and decision making at the local, national and international levels. In turn, physicians and the organizations that represent them have an obligation to participate as well.
- Physicians should be made aware of a clear plan for resource utilization, including:
- how physicians will be relieved of duties after a certain time;
- clearly defined roles and expectations, especially for those practicing outside of their area of expertise;
- vaccination/treatment plans - will physicians (and their families) have preferential access based on the need to keep caregivers healthy and on the job;
- triage plans, including how the triage model might be altered and plans to inform the public of such.
- Physicians should have access to the best equipment needed and should be able to undergo extra training in its use if required.
- Politicians and leaders should provide reassurances that satisfy physicians that they will not be "conscripted" by legislation.
During a pandemic
- Physicians should have access to up-to-date, real time information.
- Physicians should be kept informed about developments in Canada and globally.
- Communication channels should be opened with other countries (e.g. Canada should participate in WHO initiatives to identify the threats before they arrive on our doorstep).
- Resources should be provided for backup and relief of physicians and health care workers.
- Arrangements should be made for timely provision of necessary equipment in an ongoing fashion.
- Physicians should be compensated for lost clinical earnings and to cover expenses such as lost wages, lost group earnings, overhead, medical care, medications, rehabilitative therapy and other relevant expenses in case of quarantine, clinic cancellations or illness (recognizing that determining exactly when or where an infection was acquired may be difficult).
- Families should receive financial compensation in the case of a physician family member who dies as a result of providing care during a pandemic.
- In the event that physicians may be called upon in a pandemic to practice outside of their area of expertise or outside their jurisdiction, they should to contact their professional liability protection provider for information on their eligibility for protection in these circumstances.
- Interprovincial or national licensing programs should be developed to provide physicians with back-up and relief and ensure experts can move from place to place in a timely fashion without undue burden.
- Psychological and emotional counselling and support should be provided in a timely fashion for physicians, their staff and family members.
- Accommodation (i.e. a place to stay) should be provided for physicians who have to travel to another locale to provide care; or who don't want to go home and put their family at risk, when this is applicable, i.e. the epidemiology of the infectious disease causing the pandemic indicates substantially greater risk of acquiring infection in the health care setting than in the community.
- Billing and compensation arrangements should ensure physicians are properly compensated for the services they are providing, including those who may not have an active billing number in the province where the services are being provided.
After a pandemic
- Physicians should receive assistance in restarting their practice (replacing staff, restocking overhead, communicating with patients, and any other costs related to restarting the practice).
- Physicians should receive ongoing psychological support and counselling as required.
C. How are physician obligations and reciprocal obligations related?
Beyond a simple statement of the various obligations, it is clear that there must be some link between these different obligations. This is particularly important since there is now some time to plan for the next pandemic and to ensure that reciprocal obligations can be met prior to its onset. Physicians have always provided care in emergency situations without questioning what they are owed. According to paragraph 18 of the CMA Code of Ethics, physicians should "Provide whatever appropriate assistance you can to any person with an urgent need for medical care".
However, in situations where obligations can be anticipated and met in advance, it is reasonable to expect that they will be addressed. Whereas a physician who encounters an emergency situation at the site of a car crash will act without concern for personal gain or motivation, a physician caring for the same patient in an emergency department will rightly expect the availability of proper equipment and personnel.
In order to ensure proper patient care and physician safety, and to ensure physicians are able to meet their professional obligations and standards, the reciprocal obligations outlined above should be addressed by the appropriate body or organization.
If patient and physician well-being is not optimized by clarifying the obligations of physicians and society prior to the next pandemic, in spite of available time and resources necessary to do so, there are many who would call into question the ethical duty of physicians to provide care. However, the CMA believes that, in the very best and most honourable traditions of the medical profession, its members will provide care and compassion to those in need. We call on governments and society to assist us in optimizing this care for all Canadians.
The objective of this policy is to provide guidance to physicians and institutions by identifying a set of guiding principles and commitments to promote equity and diversity in medicine (as defined in the Guiding Principles section). We address equity and diversity in medicine to improve circumstances and opportunities for all physicians and learners as part of our efforts to create a more collaborative and respectful culture and practice of medicine. To achieve this, we must redress inequities, bias, and discrimination in learning and practice environments.
Individual protection from bias and discrimination is a fundamental right of all Canadians. By embracing the principles of equity and diversity, we can systematically address root causes and reduce structural barriers faced by those who want to enter the medical profession and those practicing medicine. In so doing, we improve their opportunities for advancement, health, and livelihood.
The principles of equity and diversity are grounded in the fundamental commitment of the medical profession to respect for persons. This commitment recognizes that everyone has equal and inherent worth, has the right to be valued and respected, and to be treated with dignity. When we address equity and diversity, we are opening the conversation to include the voices and knowledge of those who have historically been under-represented and/or marginalized. It is a process of empowerment—where a person can engage with and take action on issues they define as important. Empowerment involves a meaningful shift in experience that fosters belonging in the profession and draws on community supports.
As part of equity and diversity frameworks, inclusion is often articulated to refer to strategies used to increase an individual’s ability to contribute fully and effectively to organisational structures and processes. Inclusion strategies are specific organisational practices or programs focused on encouraging the involvement and participation of individuals from diverse backgrounds to integrate and value their perspectives in decision-making processes. Robust processes for inclusion are a vehicle to achieving equity and diversity. Thus, in this policy, the process of inclusion is understood to be positioned at the nexus of the overarching principles of equity and diversity.
Equity and diversity initiatives can be carefully structured to complement and strengthen merit-based approaches. Enhanced support and appropriate methods of evaluation that increase equity of opportunity (for example, equity in training, hiring processes, and in access to resources) provide all physicians and learners with a fair opportunity to cultivate and demonstrate their unique capabilities and strengths, and to realize their full potential.
Promoting equity and diversity fosters a just professional and learning culture that cultivates the diverse perspectives within it, reflects the communities physicians serve, and promotes professional excellence and social accountability as means to better serve patients. An increasingly diverse medical population provides opportunities for underserviced populations to receive better access to medical services and bolsters the management of clinical cases through the contribution of different points of view. Evidence indicates that when demonstrably more equity and diversity in medicine is achieved, physicians experience greater career satisfaction, health and wellness, and a sense of solidarity with the profession while patients experience improved care and a more responsive and adaptable health care system. Evidence further indicates that realizing the full potential of human capital is an essential driver of innovation and health system development.
This policy is consistent with the CMA Code of Ethics and Professionalism and the CMA Charter of Shared Values and strives to be in the spirit of the recommendations relevant to health made in the report of the Truth and Reconciliation Commission of Canada. The policy is informed by a body of evidence described in the accompanying Background document that includes a Glossary of terms.
A clear set of principles and commitments to improving equity and diversity demonstrates that we hold ourselves accountable to recognizing and challenging behaviours, practices, and conditions that hinder equity and diversity and to promoting behaviours, practices, and conditions that will achieve these goals.
Achieving equity in medicine
Equity refers to the treatment of people that recognizes and is inclusive of their differences by ensuring that every individual is provided with what they need to thrive, which may differ from the needs of others. It is a state in which all members of society have similar chances to become socially active, politically influential, and economically productive through the absence of avoidable or remediable differences among groups of people (defined socially, economically, demographically, or geographically). Equity in the medical profession is achieved when every person has the opportunity to realize their full potential to create and sustain a career without being unfairly impeded by discrimination or any other characteristic-related bias or barrier. To achieve this, physicians must 1) recognize that structural inequities that privilege some at the expense of others exist in training and practice environments and 2) commit to reducing these by putting in place measures that make recruitment, retention, and advancement opportunities more accessible, desirable, and achievable. To that end, physicians must apply evidence-based strategies and support applied research into the processes that lead to inequities in training and practice environments.
Fostering diversity in medicine
Diversity refers to observable and non-observable characteristics which are constructed—and sometimes chosen—by individuals, groups, and societies to identify themselves (e.g., age, culture, religion, indigeneity, ethnicity, language, gender, sexuality, health, ability, socio-economic and family status, geography). The barriers to diversity in medicine are broad and systemic. Individuals and groups with particular characteristics can be excluded from participation based on biases or barriers. Even when they are included, they are often not able to use the full range of their skills and competencies. As with improving equity, the benefits of a more diverse medical profession include improved health outcomes, system-level adaptation, and physician health and wellness. To achieve these benefits, the medical profession must become increasingly diverse by striving to create, foster, and retain physicians and learners who reflect the diversity of the communities they serve and it must be responsive to the evolving (physical, emotional, cultural, and socioeconomic) needs of patients.
Promoting a just professional and learning culture
Physicians value learning and understand that it reflects, and is informed by, the professional culture of medicine. A just professional and learning culture is one of shared respect, shared knowledge, shared opportunity, and the experience of learning together. An environment that is physically and psychologically safe by reducing bias, discrimination, and harassment is critical to creating and sustaining such a culture. To achieve this, the profession must strive to integrate cultural safety by fostering and adopting practices of cultural competence and cultural humility. Physicians and leaders across all levels of training, practice, and health settings, and through formal and informal mentorships, must also promote and foster environments where diverse perspectives are solicited, heard, and appreciated. In this way, diverse individuals are both represented in the professional culture of medicine and actively involved in decision-making processes in all aspects of the profession.
Fostering solidarity within the profession
Solidarity means standing alongside others by recognizing our commonality, shared vulnerabilities and goals, and interdependence. It is enacted through collective action and aims. To show solidarity within the profession means making a personal commitment to recognizing others as our equals, cultivating respectful, open, and transparent dialogue and relationships, and role modelling this behaviour. Solidarity enables each of us to support our colleagues in meeting their individual and collective responsibilities and accountabilities to their patients and to their colleagues. Being accountable to these goals and to each other means taking action to ensure the principles that guide the medical profession are followed, responding justly and decisively when they are not, and continually searching for ways to improve the profession through practice-based learning and experience.
Promoting professional excellence and social accountability
Engaged and informed research and action on equity and diversity is critical to promoting professional excellence and social accountability in medicine as means to better serve patients. Professional excellence is a fundamental commitment of the profession to contribute to the development of and innovation in medicine and society through clinical practice, research, teaching, mentorship, leadership, quality improvement, administration, and/or advocacy on behalf of the profession or the public. Social accountability is a pillar of the commitment to professional excellence by focusing those efforts on fostering competence to address the evolving health needs of the patients and communities physicians are mandated to serve. For care to be socially accountable, and to achieve professional excellence, physicians must provide leadership through advocacy and through action: advocacy about the benefits of addressing equity and diversity to achieve equitable health outcomes; and actions to be responsive to patient, community, and population health needs through high-quality evidence-based patient care.
To accomplish equity and diversity in medicine, organizational and institutional changes will be required across many facets of operation and culture including leadership, education, data gathering/analysis, and continuous improvement through feedback and evaluation of policies and programs. To achieve this, the CMA seeks to provide direction on broad action areas that require further specific actions and development measures in specific recruitment, training, and practice contexts. The CMA recommends:
All medical organizations, institutions, and physician leaders:
A. Take a leadership role in achieving greater equity and diversity by co-creating policies and processes that apply to them, and the individuals therein, in an accountable and transparent manner. This includes:
1. Identifying and reducing structural inequities, barriers, and biases that exist in training and practice environments to create fair opportunities for all physicians and learners; and providing the appropriate platforms, resources, and training necessary to do so to effect change collaboratively.
2. Practicing and promoting cultural safety, cultural competence, and cultural humility.
3. Providing training on implicit bias, allyship, cultural safety, cultural competence, and cultural humility, structural competence, and the value of diversity in improving health outcomes.
4. Ensuring a process is in place to review all workforce and educational policies, procedures, and practices toward considering their impact on equity and diversity. Areas of consideration include (but are not limited to) recruitment, promotion, pay, leave of absence, parental leave, resources and support, and working/learning conditions and accommodations.
5. Ensuring safe, appropriate, and effective avenues exist for those who may have experienced discrimination, harassment, or abuse in training and practice environments to report these events outside of their supervisory/promotional chain. Those experiencing these events should also be able to seek counselling without the fear of negative consequences.
6. Working towards creating and appropriately funding equity and diversity Chairs, Committees, or Offices with a mandate to investigate and address issues in equity and diversity.
7. Promoting and enabling formal and informal mentorship and sponsorship opportunities for historically under-represented groups.
B. Encourage the collection and use of data related to equity and diversity through research and funding, and, specifically, review their data practices to ensure:
1. Historically under-represented groups are meaningfully engaged through the co-development of data practices.
2. Data regarding the representation of under-represented groups is being systematically and appropriately collected and analyzed.
3. Information collected is used to review and inform internal policy and practice with the aim of reducing or eliminating system-level drivers of inequity.
4. Findings relating to these data are made accessible.
C. Support equity and diversity in recruitment, hiring, selection, appointment, and promotion practices by:
1. Requesting and participating in training to better understand approaches and strategies to promote equity and diversity, including implicit bias and allyship training that highlights the roles and responsibilities of all members of the community with emphasis on self-awareness, cultural safety, and sensitivity to intersectionalities.
2. Studying organizational environments and frameworks and identifying and addressing hiring procedures, especially for leadership and executive positions, that perpetuate institutional inequities and power structures that privilege or disadvantage people.
3. Adopting explicit criteria to recruit inclusive leaders and to promote qualified candidates from historically under-represented groups in selection processes.
Additional recommendations for institutions providing medical education and training:
1. Establishing programs that espouse cultural safety, cultural competence, and cultural humility.
2. Encouraging all instructors develop competencies including non-discriminatory and non-stereotyping communication, awareness of intersectionality, and cultural safety.
3. Providing training programs, at the undergraduate level onwards, that include awareness and education around stereotypes (gender and otherwise), intersectionalities, and the value of diversity in improving health outcomes.
4. Providing diversity mentorship programs that aim to support diverse candidates through education and training to graduation.
5. Promoting and funding student-led programs that create safe and positive spaces for students and principles of equity and diversity.
6. Ensuring recruitment strategies and admission frameworks in medical schools incorporate more holistic strategies that recognize barriers faced by certain populations to enable a more diverse pool of candidates to apply and be fairly evaluated.
7. Developing learning communities (such as undergraduate pipelines described in the background document) to promote careers in medicine as a viable option for individuals from historically under-represented communities.
Approved by the CMA Board of Directors December 2019
Organ and Tissue Donation and Transplantation (OTDT) is a rapidly changing area of medical science and practice. Organ and tissue transplantations represent significant lifesaving and life-enhancing interventions that require careful consideration by multiple stakeholders spanning medical disciplines. Technological and pharmacological advancements have made organ and tissue transplantation increasingly viable for treating related medical conditions. Changing social norms have also led to shifting perceptions of the acceptability of organ and tissue donation. Within this context, there is a need for renewed consideration of the ethical issues and principles guiding organ and tissue donation and transplantation in Canada.
The overarching principle that guides OTDT is public trust, which requires that the expressed intent either for or against donation will be honoured and respected within the donation and medical systems, and that the best interests of the potential donor are always of paramount importance; policies and mechanisms that guide OTDT should aim to maintain and foster that public trust. The CMA acknowledges and respects the diverse viewpoints, backgrounds, and religious views of physicians and patients and therefore encourages physicians to confront challenges raised by OTDT in a way that is consistent with both standards of medical ethics and patients’ values and beliefs.
This policy identifies foundational principles to address the challenges surrounding deceased and living donation. In conjunction with applicable laws and regulations in Canada, the Declaration of Istanbul, the World Health Organization (WHO) Guiding Principles on Human Cell, Tissue and Organ Transplantation, and leading clinical practices this policy aims to inform physicians and other interested parties on the guiding principles of OTDT in Canada. This policy is intended to address OTDT in adult populations; the challenges, considerations, legislation, and policy surrounding pediatric and neonatal OTDT are unique and deserve focused attention.
Physicians should be aware of relevant legislation, regulatory requirements, and policies in the jurisdiction in which they practice. Physicians are encouraged to refer to the various Canadian specialty societies that deal directly with OTDT for up-to-date information and policy, as well as innovative techniques and approaches.
The practice of OTDT is of great value to patients and society. The CMA supports the continued development of greater capacity, efficiency, and accessibility in OTDT systems in co-ordination with comprehensive and compassionate end-of-life care for Canadians while acknowledging the importance of justice, informed consent, beneficence, and confidentiality to this practice.
There is a continuous need to improve the efficiency and effectiveness of OTDT in an effort to narrow the gap between demand and supply in what remains a scarce, lifesaving resource. The principle of justice should continue to guide the equitable allocation of organs and tissues in a manner that is externally justifiable, open to public scrutiny, and balances considerations of fairness (e.g., medical need or length of time on the wait-list) with medical utility (e.g., transplantation success). There should be no discrimination based on social status or perceived social worth. Lifestyle or behavioral factors should only be considered when clear evidence indicates that those factors will impact the medical probability of success. OTDT should also not rely on the patient’s ability to pay; such actions are inconsistent with the principles that underlie Canada’s publicly-funded health system. Of note, living donation to a loved one or acquaintance (via a directed donation) is regarded as ethically acceptable if potential donors are informed of all options, including that of donating in a non-directed fashion.
All levels of government should continue to support initiatives to improve the OTDT system, raise public awareness through education and outreach campaigns, and fund ongoing research, such that any Canadian who may wish to donate their tissues or organs are given every reasonable opportunity to do so. Potential donor identification and referral, while legislated in many jurisdictions, is an important area of continued development as failure to identify donors deprives families of the opportunity to donate and deprives patients of potential transplants.
To diminish inequities in the rates of organ donation between jurisdictions, federal and provincial governments should engage in consultations with a view to implementing a coordinated, national strategy on OTDT that provides consistency and clarity on medical and legal standards of informed consent and determination of death, and institutes access to emerging best practices that support physicians, providers, and patients. Efforts should be made to ensure adequate engagement with potential donors from communities that have historically had lower living donor rates to help reduce inequities in access to living donation. Policymakers should also continue to explore and appraise the evidence on policy interventions to improve the rates of organ donation in Canada – for example, see a brief overview of opt-in vs. opt-out donation systems in the background to this policy.
2. INFORMED CONSENT AND VOLUNTARINESS
Organ and tissue donation must always be an autonomous decision, free of undue pressure or coercion. By law, the potential organ donor, or their substitute decision-maker, must provide informed consent. Physicians should direct patients to appropriate resources if that patient has expressed interest to become a donor after their death. If a potential donor has not made an expression of intent for or against donation, substitute decision-makers, families, or loved ones may be approached to provide authorization for donation. It should also be noted that consent indicates a willingness to donate, but that donation itself hinges on factors such as medical suitability and timing.
End-of-life decisions must be guided by an individual's values and religious or philosophical beliefs of what it means to have a meaningful life and death. The autonomy of an individual should always be respected regarding their wish, intent, or registered commitment to become a donor after death. Input from family and loved-ones should always be considered in the context of the potential donor’s wishes or commitments – these situations must be handled on a case-by-case basis with respect for cultural and religious views while maintaining the autonomously expressed wishes of the potential donor. Physicians should make every reasonable effort to be aware and considerate of the cultural and religious views of their patients as they pertain to OTDT. Likewise, Canadian medical schools, relevant subspecialties, and institutions should provide training and continuing professional development opportunities on OTDT, including both medicolegal implications and cultural competency.
To protect the voluntariness of the potential donor’s decision, public appeals to encourage altruistic donation should not seek to compensate potential donors through payment and should not subvert established systems of organ allocation. Any exploitation or coercion of a potential donor must be avoided. However, remuneration from officially sanctioned sources for the purpose of reimbursement of costs associated with living donation (e.g., transfer to another location or lost wages during the procedure), may be considered when no party profits financially from the exchange. The CMA supports proposed amendments to the Criminal Code and the Immigration and Refugee Protection Act that criminalizes or otherwise seeks to prevent the coercive collection and transplantation of organs domestically and internationally (i.e., organ trafficking – see relevant guidelines on trafficking ). The CMA also discourages Canadians from participating in organ tourism as either a recipient or donor; physicians should not take part in transplantation procedures where it is reasonable to suspect that organs have been obtained without the donor’s informed consent or where the donor received payment (from WHO Guiding Principle 7); however, in accordance with physicians’ commitment to the well-being of the patient and the professional responsibilities relating to the patient-physician relationship in the CMA Code of Ethics and Professionalism, physicians have an obligation to treat a post-tranplant patient if requested after the patient has participated in organ tourism; physicians should be aware of any legal or regulatory obligations they may have to report a patient’s organ tourism to national authorities, taking into consideration their duties of privacy and confidentiality to the patient. ,
3. BALANCING BENEFICENCE AND NON-MALEFICENCE
Balancing beneficence and non-maleficence means to: Consider first the well-being of the patient; always act to benefit and promote the good of the patient; provide appropriate care and management across the care continuum; take all reasonable steps to prevent or minimize harm to the patient; disclose to the patient if there is a risk of harm or if harm occurs; recognize the balance of potential benefits and harms associated with any medical act; and act to bring about a positive balance of benefits over harms.
Prospective donors can benefit from the knowledge that they can potentially save lives after their own deaths. However, potential donors must not be harmed by the act of donating. In accordance with the Dead Donor Rule, organ or tissue procurement should never be the cause of death. Moreover, the care of the dying patient must never be compromised by the desire to protect organs for donation or expedite death to allow timely organ retrieval. Physicians determining that a potential donor has died should not be directly involved in tissue or organ removal from the donor or subsequent transplantation procedures, nor should they be responsible for the care of any intended recipients of such tissues and organs (from WHO Guiding Principle 2). Leading clinical criteria, in conjunction with legally prescribed definitions of death and procedures, should inform the determination of death before donation procedures are initiated.
DCD should be practiced in compliance with the regulations of individual transplant centers, relevant legislation, and leading Canadian clinical guidelines including the national recommendations for donation after cardiocirculatory death in Canada and the guidelines for the withdrawal of life-sustaining measures. Patients undergoing medical assistance in dying (MAiD) may also be eligible for organ and tissue donation – see relevant policy guidelines.
Living donors are motivated to act primarily for the benefit of the recipient. The perceived acceptability of living donation varies from person to person; living donation is deemed to be ethically acceptable when the potential benefits outweigh the potential risks of living donation; living donation is not ethically acceptable where there is a material risk of death of the donor; living donors must provide informed consent, meet medical and psychological requirements, and receive appropriate follow-up care. It is not necessary for the potential donor to be biologically or emotionally related to the recipient.
4. CONFIDENTIALITY AND PRIVACY
Current practice protects the privacy of both donor and recipient and does not allow donation teams, organ donation organizations, or transplant teams to inform either party of the other’s identity. The continuation of this practice is encouraged at the present time to protect the privacy of both donors and recipients. In addition, healthcare providers should consider the privacy and confidentiality implications of practices employed throughout the assessment and post-operative periods – patient consent should be obtained for practices involving any loss of privacy or confidentiality (e.g. group education sessions, etc.).
A person’s choice about whether or not they intend to donate organs and tissues after their death is individual and, like other health-related information, should be considered private. The right to privacy regarding personal health information extends beyond the declaration of death.
Whenever possible, potential donor and recipients should be cared for and evaluated by separate medical teams. In the case of non-directed donations, it may be necessary for information to be shared between donor and recipient teams (e.g. recipient’s underlying disease and risk for recurrence); however, such information should be limited to what is necessary for making an informed choice. Conversely, the CMA recognizes that the choice and process of directed donation is one that is deeply personal, which is likely to result in the intersection of both donor and recipient pathways of care. In such cases, the same onus of confidentiality may not apply given the choices of the donor and recipient involved.
Approved by the CMA Board of Directors December 2019
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.
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
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
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).
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.
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
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.
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
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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.
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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.
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