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Federal Monitoring and Reporting Regime for MAID

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

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

https://policybase.cma.ca/en/permalink/policy13856
Date
2018-02-13
Topics
Ethics and medical professionalism
  1 document  
Policy Type
Response to consultation
Date
2018-02-13
Topics
Ethics and medical professionalism
Text
The Canadian Medical Association (CMA) is pleased to provide input on the proposed regulations of the federal monitoring of Medical Assistance in Dying in Canada. The CMA fully supports the proposed intent of the regulations, in particular, public accountability and transparency and safeguards for vulnerable patient populations. Tracking trends and carrying out research is very important to monitor the implementation and implications of medical assistance in dying. The CMA further supports the intent to provide electronic reporting and guidance documents, and to leverage any synergies between the federal and provincial/territorial governments, especially to prevent duplication and to promote consistency in reporting across the country. The CMA would like to raise the following critical areas for your consideration: 1. Definitions/parameters of terms There continues to be a need to more clearly define several terms to ensure consistency of reporting. For example: a. Who constitutes a “practitioner”? One can argue that there is a broad scope of who is “a medical practitioner or nurse practitioner”. Is it the practitioner who provides MAiD? Or he practitioner who first reads a patient’s request for MAiD? Or is the first practitioner? Or second practitioner who assesses the patient? b. What constitutes a therapeutic relationship (as one of the eight proposed items to be collected about the practitioner)? A therapeutic relationship is not required to access MAiD. This criterion should be removed and if not, given the differences in opinion in the health professions as to what constitutes a therapeutic relationship includes, it should be clearly defined. c. What constitutes a request, a written request, the receipt of a request? If reporting obligations are “triggered” by a patient’s “written request”, at what point is that request actually triggered? The very first practitioner who receives the patient’s written request? Or the practitioner who conducts the eligibility assessment upon receipt of the written request? Or the practitioner who provides the prescription or carries out the procedure? d. On a related point, without clear definitions, any future comparative analysis of research or trends will be difficult as there will be no common starting point. e. There continues to be confusion on how to count or when to start counting the required 10 clear days. There are many reasons why this requires more clarity. 2. Collection and protection of data We applaud Health Canada for further reducing and revising data requirements. We submit, however, that further reductions are required for several reasons, including adherence to privacy best practices that require the collection of the least amount of data necessary to achieve reasonable purposes. In particular: a. In view of the quantity and highly personal and sensitive data that will be collected about patients and practitioners, data sharing agreements should be required; for example, agreements between the federal government and provincial/territorial governments or between researchers and others requesting use of the data to facilitate the appropriate sharing of data. b. Collection of personal information should be limited to what is relevant to the purpose of monitoring medical assistance in dying. Personal information, such as the patient’s full postal code, marital status, or principal occupation is beyond the scope of the eligibility criteria outlined in the legislation and thus beyond the scope of the purpose of monitoring the impact of the legislation. c. Any “characteristics” of the patient should refer only to the eligibility criteria. If other data will be collected beyond that scope, the justification for doing so, and the characteristics themselves, should be clearly outlined. d. The scope of the information collected about the practitioner could be narrowed. As is, it is very broad – a list of eight items – while the Quebec regulations, as a comparator, have only three-four items that must be collected in relation to the physician who administers MAiD. 3. Additional requirements Schedule 4 [section 2(i)] of the proposed regulations requires that the practitioner opine as to whether the patient met, or did not meet, all of the eligibility criteria outlined in the legislation – with two significantly expanded requirements; the requirements that the practitioner: 1) provide an estimate as to the amount of time MAiD shortened the patient’s life; and 2) indicate the anticipated likely cause of natural death of the patient. These additional requirements are beyond the letter and spirit of the legislation and, in many ways, are in direct contradiction to the legislation. The Legislature was not unaware when it drafted the Act that it did not follow other jurisdictions’ criteria requiring either a terminal illness or a prognosis of time within which the practitioner believed the patient would die, e.g., “within the next 6 months”. It is specifically the lack of a timeframe that makes the legislation unique and provides flexibility for both patients and practitioners. By adding these two additional criteria for reporting, in effect, they become additional criteria for eligibility which is, as stated above, beyond the scope, and in contradiction to, the legislation. 4. Lack of clarity of reasons for ineligibility There is a potential for misunderstanding as to whether reasons are required when the patient does not meet the criteria under Schedule 4, section 2(a) – (h). The introduction to section 2 speaks to the practitioner giving an indication as to (a) whether the patient met or (b) did not meet the criteria. However, in the itemized criteria [2(a)-(h)] it only speaks to the practitioner having to provide reasons when the patient meets the criteria (and not when the patient has not met the criteria). It would be helpful to specify that reasons should be required when the patient does and does not meet the criteria. This is also crucial for the publication of the Minister of Health’s annual report requiring that the reasons, and which eligibility criteria were not met, be addressed. Conclusion The CMA recognizes the importance of regulations to capture the provision, collection, use, and disposal of information for the purpose of monitoring MAiD. The CMA cautions against introducing reporting requirements that are beyond the scope of the legislation. As noted in the legislation, practitioners who fail to provide information under the regulations may be found guilty under the Criminal Code and subject to possible imprisonment. It is thus imperative that the federal government drafts clear regulations that respect the legislation, privacy, research ethics, and a de minimus approach. .
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Palliative care

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