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.
GUIDELINES FOR PHYSICIANS IN INTERACTIONS WITH INDUSTRY
The history of health care delivery in Canada has included interaction between physicians and the pharmaceutical and health supply industries; this interaction has extended to research as well as to education. Physicians understand that they have a responsibility to ensure that their participation in such collaborative efforts is in keeping with their primary obligation to their patients and duties to society, and to avoid situations of conflict of interest where possible and appropriately manage these situations when necessary. They understand as well the need for the profession to lead by example by promoting physician-developed guidelines.
The following guidelines have been developed by the CMA to serve as a resource tool for physicians in helping them to determine what type of relationship with industry is appropriate. They are not intended to prohibit or dissuade appropriate interactions of this type, which have the potential to benefit both patients and physicians.
Although directed primarily to individual physicians, including residents, and medical students, the guidelines also apply to relationships between industry and medical organizations.
1. The primary objective of professional interactions between physicians and industry should be the advancement of the health of Canadians.
2. Relationships between physicians and industry are guided by the CMA's
Code of Ethics and by this document.
3. The practising physician's primary obligation is to the patient. Relationships with industry are inappropriate if they negatively affect the fiduciary nature of the patient-physician relationship.
4. Physicians should resolve any conflict of interest between themselves and their patients resulting from interactions with industry in favour of their patients. In particular, they must avoid any self-interest in their prescribing and referral practices.
5. Except for physicians who are employees of industry, in relations with industry the physician should always maintain professional autonomy and independence. All physicians should remain committed to scientific methodology.
6. Those physicians with ties to industry have an obligation to disclose those ties in any situation where they could reasonably be perceived as having the potential to influence their judgment.
7. A prerequisite for physician participation in all research activities is that these activities are ethically defensible, socially responsible and scientifically valid. The physician's primary responsibility is the well-being of the patient.
8. The participation of physicians in industry sponsored research activities must always be preceded by formal approval of the project by an appropriate ethics review body. Such research must be conducted according to the appropriate current standards and procedures.
9. Patient enrolment and participation in research studies must occur only with the full, informed, competent and voluntary consent of the patient or his or her proxy, unless the research ethics board authorizes an exemption to the requirement for consent. In particular, the enrolling physician must inform the potential research subject, or proxy, about the purpose of the study, its source of funding, the nature and relative probability of harms and benefits, and the nature of the physician's participation and must advise prospective subjects that they have the right to decline to participate or to withdraw from the study at any time, without prejudice to their ongoing care.
10. The physician who enrolls a patient in a research study has an obligation to ensure the protection of the patient's privacy, in accordance with the provisions of applicable national or provincial legislation and CMA's Health Information Privacy Code. If this protection cannot be guaranteed, the physician must disclose this as part of the informed consent process.
11. Practising physicians should not participate in clinical trials unless the study will be registered prior to its commencement in a publicly accessible research registry.
12. Because of the potential to influence judgment, remuneration to physicians for participating in research studies should not constitute enticement. It may cover reasonable time and expenses and should be approved by the relevant research ethics board. Research subjects must be informed if their physician will receive a fee for their participation and by whom the fee will be paid.
13. Finder's fees, whereby the sole activity performed by the physician is to submit the names of potential research subjects, should not be paid. Submission of patient information without their consent would be a breach of confidentiality. Physicians who meet with patients, discuss the study and obtain informed consent for submission of patient information may be remunerated for this activity.
14. Incremental costs (additional costs that are directly related to the research study) must not be paid by health care institutions or provincial or other insurance agencies regardless of whether these costs involve diagnostic procedures or patient services. Instead, they must be assumed by the industry sponsor or its agent.
15. When submitting articles to medical journals, physicians must state any relationship they have to companies providing funding for the studies or that make the products that are the subject of the study whether or not the journals require such disclosure. Funding sources for the study should also be disclosed.
16. Physicians should only be included as an author of a published article reporting the results of an industry sponsored trial if they have contributed substantively to the study or the composition of the article.
17. Physicians should not enter into agreements that limit their right to publish or disclose results of the study or report adverse events which occur during the course of the study. Reasonable limitations which do not endanger patient health or safety may be permissible.
Industry-Sponsored Surveillance Studies
18. Physicians should participate only in post-marketing surveillance studies that are scientifically appropriate for drugs or devices relevant to their area of practice and where the study may contribute substantially to knowledge about the drug or device. Studies that are clearly intended for marketing or other purposes should be avoided.
19. Such studies must be reviewed and approved by an appropriate research ethics board. The National Council on Ethics in Human Research is an additional source of advice.
20. The physician still has an obligation to report adverse events to the appropriate body or authority while participating in such a study.
Continuing Medical Education / Continuing Professional Development (CME/CPD)
21. This section of the Guidelines is understood to address primarily medical education initiatives designed for practicing physicians. However, the same principles will also apply for educational events (such as noon-hour rounds and journal clubs) which are held as part of medical or residency training.
22. The primary purpose of CME/CPD activities is to address the educational needs of physicians and other health care providers in order to improve the health care of patients. Activities that are primarily promotional in nature, such as satellite symposia, should be identified as such to faculty and attendees and should not be considered as CME/CPD.
23. The ultimate decision on the organization, content and choice of CME/CPD activities for physicians shall be made by the physician-organizers.
24. CME/CPD organizers and individual physician presenters are responsible for ensuring the scientific validity, objectivity and completeness of CME/CPD activities. Organizers and individual presenters must disclose to the participants at their CME/CPD events any financial affiliations with manufacturers of products mentioned at the event or with manufacturers of competing products. There should be a procedure available to manage conflicts once they are disclosed.
25. The ultimate decision on funding arrangements for CME/CPD activities is the responsibility of the physician-organizers. Although the CME/CPD publicity and written materials may acknowledge the financial or other aid received, they must not identify the products of the company(ies) that fund the activities.
26. All funds from a commercial source should be in the form of an unrestricted educational grant payable to the institution or organization sponsoring the CME/CPD activity.
27. Industry representatives should not be members of CME content planning committees. They may be involved in providing logistical support.
28. Generic names should be used in addition to trade names in the course of CME/CPD activities.
29. Physicians should not engage in peer selling. Peer selling occurs when a pharmaceutical or medical device manufacturer or service provider engages a physician to conduct a seminar or similar event that focuses on its own products and is designed to enhance the sale of those products. This also applies to third party contracting on behalf of industry. This form of participation would reasonably be seen as being in contravention of the CMA's Code of Ethics, which prohibits endorsement of a specific product.
30. If specific products or services are mentioned, there should be a balanced presentation of the prevailing body of scientific information on the product or service and of reasonable, alternative treatment options. If unapproved uses of a product or service are discussed, presenters must inform the audience of this fact.
31. Negotiations for promotional displays at CME/CPD functions should not be influenced by industry sponsorship of the activity. Promotional displays should not be in the same room as the educational activity.
32. Travel and accommodation arrangements, social events and venues for industry sponsored CME/CPD activities should be in keeping with the arrangements that would normally be made without industry sponsorship. For example, the industry sponsor should not pay for travel or lodging costs or for other personal expenses of physicians attending a CME/CPD event. Subsidies for hospitality should not be accepted outside of modest meals or social events that are held as part of a conference or meeting. Hospitality and other arrangements should not be subsidized by sponsors for personal guests of attendees or faculty, including spouses or family members.
33. Faculty at CME/CPD events may accept reasonable honoraria and reimbursement for travel, lodging and meal expenses. All attendees at an event cannot be designated faculty. Faculty indicates a presenter who prepares and presents a substantive educational session in an area where they are a recognized expert or authority.
Electronic Continuing Professional Development (eCPD)
34. The same general principles which apply to "live, in person" CPD events, as outlined above, also apply to eCPD (or any other written curriculum-based CPD) modules. The term "eCPD" generally refers to accredited on-line or internet-based CPD content or modules. However, the following principles can also apply to any type of written curriculum based CPD.
35. Authors of eCPD modules are ultimately responsible for ensuring the content and validity of these modules and should ensure that they are both designed and delivered at arms'-length of any industry sponsors.
36. Authors of eCPD modules should be physicians with a special expertise in the relevant clinical area and must declare any relationships with the sponsors of the module or any competing companies.
37. There should be no direct links to an industry or product website on any web page which contains eCPD material.
38. Information related to any activity carried out by the eCPD participant should only be collected, used, displayed or disseminated with the express informed consent of that participant.
39. The methodologies of studies cited in the eCPD module should be available to participants to allow them to evaluate the quality of the evidence discussed. Simply presenting abstracts that preclude the participant from evaluating the quality of evidence should be avoided. When the methods of cited studies are not available in the abstracts, they should be described in the body of the eCPD module.
40. If the content of eCPD modules is changed, re-accreditation is required.
41. Physicians may be approached by industry representatives and asked to become members of advisory or consultation boards, or to serve as individual advisors or consultants. Physicians should be mindful of the potential for this relationship to influence their clinical decision making. While there is a legitimate role for physicians to play in these capacities, the following principles should be observed:
A. The exact deliverables of the arrangement should be clearly set out and put in writing in the form of a contractual agreement. The purpose of the arrangement should be exclusively for the physician to impart specialized medical knowledge that could not otherwise be acquired by the hiring company, and should not include any promotional or educational activities on the part of the company itself.
B. Remuneration of the physician should be reasonable and take into account the extent and complexity of the physician's involvement.
C. Whenever possible, meetings should be held in the geographic locale of
the physician or as part of a meeting which he/she would normally attend. When these arrangements are not feasible, basic travel and accommodation expenses may be reimbursed to the physician advisor or consultant. Meetings should not be held outside of Canada, with the exception of international boards.
Clinical Evaluation Packages (Samples)
42. The distribution of samples should not involve any form of material gain for the physician or for the practice with which he or she is associated.
43. Physicians who accept samples or other health care products are responsible for recording the type and amount of medication or product dispensed. They are also responsible for ensuring their age-related quality and security and their proper disposal.
44. Practising physicians should not accept personal gifts of any significant monetary or other value from industry. Physicians should be aware that acceptance of gifts of any value has been shown to have the potential to influence clinical decision making.
45. These guidelines apply to relationships between physicians and all commercial organizations, including but not limited to manufacturers of medical devices, nutritional products and health care products as well as service suppliers.
46. Physicians should not dispense pharmaceuticals or other products unless they can demonstrate that these cannot be provided by an appropriate other party, and then only on a cost-recovery basis.
47. Physicians should not invest in industries or related undertakings if this might inappropriately affect the manner of their practice or their prescribing behaviour.
48. Practising physicians affiliated with pharmaceutical companies should not allow their affiliation to influence their medical practice inappropriately.
49. Practising physicians should not accept a fee or equivalent consideration from pharmaceutical manufacturers or distributors in exchange for seeing them in a promotional or similar capacity.
50. Practising physicians may accept patient teaching aids appropriate to their area of practice provided these aids carry at most the logo of the donor company and do not refer to specific therapeutic agents, services or other products.
Medical Students and Residents
51. The principles in these guidelines apply to physicians-in training as well as to practising physicians.
52. Medical curricula should deal explicitly with the guidelines by including educational sessions on conflict of interest and physician-industry interactions.
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
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.
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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://126.96.36.199/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.
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