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Best practices for smartphone and smart-device clinical photo taking and sharing

https://policybase.cma.ca/en/permalink/policy13860

Date
2018-03-03
Topics
Health information and e-health
Ethics and medical professionalism
  1 document  
Policy Type
Policy document
Date
2018-03-03
Topics
Health information and e-health
Ethics and medical professionalism
Text
Clinical photography is a valuable tool for physicians. Smartphones, as well as other devices supporting network connectivity, offer a convenient, efficient method to take and share images. However, due to the private nature of the information contained in clinical photographs there are concerns as to the appropriate storage, dissemination, and documentation of clinical images. Confidentiality of image data must be considered and the dissemination of these images onto servers must respect the privacy and rights of the patient. Importantly, patient information should be considered as any information deriving from a patient, and the concepts outlined therefore apply to any media that can be collected on, or transmitted with, a smart-device. Clinical photography can aid in documenting form and function, in tracking conditions and wound healing, in planning surgical operations, and in clinical decision-making. Additionally, clinical photographs can provide physicians with a valuable tool for patient communication and education. Due to the convenience of this type of technology it is not appropriate to expect physicians to forego their use in providing their patients with the best care available. The technology and software required for secure transfer, communication, and storage of clinical media is presently available, but many devices have non-secure storage/dissemination options enabled and lack user-control for permanently deleting digital files. In addition, data uploaded onto server systems commonly cross legal jurisdictions. Many physicians are not comfortable with the practice, citing security, privacy, and confidentiality concerns as well as uncertainty in regards to regional regulations governing this practice.1 Due to concern for patient privacy and confidentiality it is therefore incredibly important to limit the unsecure or undocumented acquisition or dissemination of clinical photographs. To assess the current state of this topic, Heyns et al. have reviewed the accessibility and completeness of provincial and territorial medical regulatory college guidelines.2 Categories identified as vital and explored in this review included: Consent; Storage; Retention; Audit; Transmission; and Breach. While each regulatory body has addressed limited aspects of the overall issue, the authors found a general lack of available information and call for a unified document outlining pertinent instructions for conducting clinical photography using a smartphone and the electronic transmission of patient information.2 The discussion of this topic will need to be ongoing and it is important that physicians are aware of applicable regulations, both at the federal and provincial levels, and how these regulations may impact the use of personal devices. The best practices supported here aim to provide physicians and healthcare providers with an understanding of the scope and gravity of the current environment, as well as the information needed to ensure patient privacy and confidentiality is assessed and protected while physicians utilize accessible clinical photography to advance patient care. Importantly, this document only focusses on medical use (clinical, academic, and educational) of clinical photography and, while discussing many core concepts of patient privacy and confidentiality of information, should not be perceived as a complete or binding framework. Additionally, it is recommended that physicians understand the core competencies of clinical photography, which are not described here. The Canadian Medical Association (CMA) suggests that the following recommendations be implemented, as thoroughly as possible, to best align with the CMA policy on the Principles for the Protection of Patient Privacy (CMA Policy PD2018-02). These key recommendations represent a non-exhaustive set of best practices - physicians should seek additional information as needed to gain a thorough understanding and to stay current in this rapidly changing field. KEY RECOMMENDATIONS 1. CONSENT * Informed consent must be obtained, preferably prior, to photography with a mobile device. This applies for each and any such encounter and the purpose made clear (i.e. clinical, research, education, publication, etc.). Patients should also be made aware that they may request a copy of a picture or for a picture to be deleted. * A patient's consent to use electronic transmission does not relieve a physician of their duty to protect the confidentiality of patient information. Also, a patient's consent cannot override other jurisdictionally mandated security requirements. * All patient consents (including verbal) should be documented. The acquisition and recording of patient consent for medical photography/dissemination may be held to a high standard of accountability due to the patient privacy and confidentiality issues inherent in the use of this technology. Written and signed consent is encouraged. * Consent should be considered as necessary for any and all photography involving a patient, whether or not that patient can be directly recognized, due to the possibility of linked information and the potential for breach of privacy. The definition of non-identifiable photos must be carefully considered. Current technologies such as face recognition and pattern matching (e.g. skin markers, physical structure, etc.), especially in combination with identifying information, have the potential to create a privacy breach. * Unsecure text and email messaging requires explicit patient consent and should not be used unless the current gold standards of security are not accessible. For a patient-initiated unsecure transmission, consent should be clarified and not assumed. 2. TRANSMISSION * Transmission of photos and patient information should be encrypted as per current-day gold standards (presently, end-to-end encryption (E2EE)) and use only secure servers that are subject to Canadian laws. Explicit, informed consent is required otherwise due to privacy concerns or standards for servers in other jurisdictions. Generally, free internet-based communication services and public internet access are unsecure technologies and often operate on servers outside of Canadian jurisdiction. * Efforts should be made to use the most secure transmission method possible. For data security purposes, identifying information should never be included in the image, any frame of a video, the file name, or linked messages. * The sender should always ensure that each recipient is intended and appropriate and, if possible, receipt of transmission should be confirmed by the recipient. 3. STORAGE * Storing images and data on a smart-device should be limited as much as possible for data protection purposes. * Clinical photos, as well as messages or other patient-related information, should be completely segregated from the device's personal storage. This can be accomplished by using an app that creates a secure, password-protected folder on the device. * All information stored (on internal memory or cloud) must be strongly encrypted and password protected. The security measures must be more substantial than the general password unlock feature on mobile devices. * Efforts should be made to dissociate identifying information from images when images are exported from a secure server. Media should not be uploaded to platforms without an option for securely deleting information without consent from the patient, and only if there are no better options. Automatic back-up of photos to unsecure cloud servers should be deactivated. Further, other back-up or syncing options that could lead to unsecure server involvement should be ascertained and the risks mitigated. 4. Cloud storage should be on a Canadian and SOCII certified server. Explicit, informed consent is required otherwise due to privacy concerns for servers in other jurisdictions. 5. AUDIT & RETENTION * It is important to create an audit trail for the purposes of transparency and medical best practice. Key information includes patient and health information, consent type and details, pertinent information regarding the photography (date, circumstance, photographer), and any other important facts such as access granted/deletion requests. * Access to the stored information must be by the authorized physician or health care provider and for the intended purpose, as per the consent given. Records should be stored such that it is possible to print/transfer as necessary. * Original photos should be retained and not overwritten. * All photos and associated messages may be considered part of the patient's clinical records and should be maintained for at least 10 years or 10 years after the age of majority, whichever is longer. When possible, patient information (including photos and message histories between health professionals) should be retained and amalgamated with a patient's medical record. Provincial regulations regarding retention of clinical records may vary and other regulations may apply to other entities - e.g. 90 years from date of birth applies to records at the federal level. * It may not be allowable to erase a picture if it is integral to a clinical decision or provincial, federal, or other applicable regulations require their retention. 6. BREACH * Any breach should be taken seriously and should be reviewed. All reasonable efforts must be made to prevent a breach before one occurs. A breach occurs when personal information, communication, or photos of patients are stolen, lost, or mistakenly disclosed. This includes loss or theft of one's mobile device, texting to the wrong number or emailing/messaging to the wrong person(s), or accidentally showing a clinical photo that exists in the phone's personal photo album. * It should be noted that non-identifying information, when combined with other available information (e.g. a text message with identifiers or another image with identifiers), can lead to highly accurate re-identification. * At present, apps downloaded to a smart-device for personal use may be capable of collecting and sharing information - the rapidly changing nature of this technology and the inherent privacy concerns requires regular attention. Use of specialized apps designed for health-information sharing that help safeguard patient information in this context is worth careful consideration. * Having remote wipe (i.e. device reformatting) capabilities is an asset and can help contain a breach. However, inappropriate access may take place before reformatting occurs. * If a smartphone is strongly encrypted and has no clinical photos stored locally then its loss may not be considered a breach. * In the event of a breach any patient potentially involved must be notified as soon as possible. The CMPA, the organization/hospital, and the Provincial licensing College should also be contacted immediately. Provincial regulations regarding notification of breach may vary. Approved by the CMA Board of Directors March 2018 References i Heyns M†, Steve A‡, Dumestre DO‡, Fraulin FO‡, Yeung JK‡ † University of Calgary, Canada ‡ Section of Plastic Surgery, Department of Surgery, University of Calgary, Canada 1 Chan N, Charette J, Dumestre DO, Fraulin FO. Should 'smart phones' be used for patient photography? Plast Surg (Oakv). 2016;24(1):32-4. 2 Unpublished - Heyns M, Steve A, Dumestre DO, Fraulin FO, Yeung J. Canadian Guidelines on Smartphone Clinical Photography.

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CMA Policy Endorsement Guidelines

https://policybase.cma.ca/en/permalink/policy14021

Date
2018-03-03
Topics
Ethics and medical professionalism
  1 document  
Policy Type
Policy document
Date
2018-03-03
Topics
Ethics and medical professionalism
Text
These Guidelines constitute an implementation tool of seven recommendations and are informed by Guidelines for CMA’s Activities and Relationships with Other Parties (aka CMA’s Corporate Relationships Policy) and CMA’s Advertising and Sponsorship Policy. 1. Scope These Guidelines apply to the Canadian Medical Association (and not to its subsidiaries). As these are Guidelines, exceptions may be necessary from time to time wherein staff may use their discretion and judgment. 2. Definition Endorsement is an umbrella term encompassing “policy endorsement”, “sponsorship1” and “branding”. Policy endorsement includes: (a) CMA considering upon request, non-pecuniary public approval, which may include the use of CMA’s name and/or logo, of an organization’s written policy, on an issue that aligns with CMA policy, where there is no immediate expectation of return; or, (b) CMA adopting the policy of another organization as our policy; or (c) CMA asking another organization to publicly support our policy. 3. Process (a) Criteria: For policy endorsement requests from another organization to endorse their policy2 the following criteria shall be applied: i) we have a policy on the subject-matter and ii) we are actively working on advancing that policy position and iii) the organization has a follow-up action plan associated with its request. (b) Approval: Where policy exists, approval requires a policy staff member (with portfolio responsibility) and the VP of Medical Professionalism, or the policy staff member (with portfolio responsibility) and the Chief Policy Advisor. Where no policy exists, approval of the Board of Directors is required. (c) Annual confirmation: Where CMA adopts the policy of another organization3, CMA staff shall confirm annually, or more frequently if circumstances dictate, that the policy has not been altered by the other organization. (d) Requests: Pursuit of personal endorsement requests are not appropriate. Wherever possible, requests should come from an organization and not an individual. 4. Results (a) Where CMA adopts the policy of another organization, the adopted policy shall become CMA policy, and will include a notation on the document as being an adopted policy of [organization]. (b) All adopted policies will be housed in an accessible searchable database. (c) All requests by organizations for CMA to endorse their policy will be tracked in a central location, along with any response. 1 Sponsorship means, to consider upon request, pecuniary public approval, which may include the use of CMA’s name and/or logo, of an organization’s event (eg., conference), on an issue that is supported by CMA policy or that promotes CMA brand awareness, where there is an immediate expectation of return. 2 That is, part (a) of the definition in Section 2. 3 That is, part (b) of the definition in Section 2.

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Guiding principles for physicians recommending mobile health applications to patients

https://policybase.cma.ca/en/permalink/policy11521

Date
2015-05-30
Topics
Health information and e-health
Physician practice/ compensation/ forms
  1 document  
Policy Type
Policy document
Date
2015-05-30
Topics
Health information and e-health
Physician practice/ compensation/ forms
Text
GUIDING PRINCIPLES FOR PHYSICIANS RECOMMENDING MOBILE HEALTH APPLICATIONS TO PATIENTS This document is designed to provide basic information for physicians about how to assess a mobile health application for recommendation to a patient in the management of that patient's health, health care, and health care information. These guiding principles build on the Canadian Medical Association's (CMA) Physician Guidelines for Online Communication with Patients.1 Background * Mobile health applications, distinct from regulated medical devices, may be defined as an application on a mobile device that is intended for use in the diagnosis of disease or other conditions, or in the cure, mitigation, treatment, or prevention of disease. The functions of these applications may include: o The ability to store and track information about an individual or group's health or the social determinants thereof; o Periodic educational information, reminders, or motivational guidance; o GPS location information to direct or alert patients; o Standardized checklists or questionnaires.2 * Mobile health applications can enhance health outcomes while mitigating health care costs because of their potential to improve a patient's access to information and care providers.3 * Mobile health applications are most commonly used on a smart phone and/or tablet. Some may also interface with medical devices. * The use of mobile health applications reflects an emerging trend towards personalized medicine and patient involvement in the management of their health information. By 2016, 142 million health apps will have been downloaded.4 According to some industry estimates, by 2018, 50 percent of the more than 3.4 billion smartphone and tablet users worldwide will have downloaded at least one mobile health application.5 * While mobile health application downloads are increasing, there is little information about usage and adherence by patients. It is believed that many patients cease to use a mobile health application soon after downloading it. * Distributers of mobile health applications do not currently assess content provided by mobile health applications for accuracy, comprehensiveness, reliability, timeliness, or conformity to clinical practice guidelines.6 However, mobile applications may be subjected to certain standards to ensure critical technical requirements such as accessibility, reachability, adaptability, operational reliability, and universality. * Increasingly there are independent websites providing reviews of medical apps and checklists for health care professionals. However, the quality criteria used by these sites, potential conflicts of interest, and the scope and number of mobile apps assessed are not always declared by these groups. To date, randomized controlled trials are not usually employed to assess the effectiveness of mobile health applications. Some believe that the rigorousness of this type of assessment may impede the timeliness of a mobile health application's availability.7 * Some examples of the uses of mobile health applications include tracking fitness activities to supplement a healthy lifestyle; supported self-management of health and health information; post-procedure follow up; viewing of test results; and the virtualization of interaction between patients and providers, such as remote patient monitoring for chronic disease management. Some mobile health applications may be linked to a patient profile or patient portal associated with a professional or recognized association or medical society or health care organization. * Some mobile health applications may be an extension of an electronic medical records (EMR) platform. Guiding principles * The objective of recommending a mobile health application to a patient must be to enhance the safety and/or effectiveness of patient care or otherwise for the purpose of health promotion. * A mobile health application is one approach in health service delivery. Mobile health applications should complement, rather than replace, the relationship between a physician and patient. * No one mobile health application is appropriate for every patient. Physicians may wish to understand a patient's abilities, comfort level, access to technology, and the context of the application of care before recommending a mobile health application. * Should a physician recommend a mobile health application to a patient, it is the responsibility of the physician to do so in a way that adheres to legislation and regulation (if existing) and/or professional obligations. * If the mobile health application will be used to monitor the patient's condition in an ongoing manner, the physician may wish to discuss with the patient what they should watch for and the steps they should take in response to information provided. * Physicians are encouraged to share information about applications they have found effective with colleagues. * Physicians who require additional information about the competencies associated with eHealth and the use of health information technologies may wish to consult The Royal College of Physicians and Surgeons of Canada's (RCPSC) framework of medical competencies, CanMEDS.8 * Physicians may wish to enter into and document a consent discussion with their patient, which can include the electronic management of health information or information printed out from electronic management platforms like mobile health applications. This agreement may include a one-time conveyance of information and recommendations to cover the elements common to many mobile health applications, such as the general risk to privacy associated with storing health information on a mobile device. Characteristics of a safe and effective mobile health application A mobile health application does not need to have all of the following characteristics to be safe and effective. However, the more of the following characteristics a mobile health application has, the likelier it will be appropriate for recommendation to a patient: 1. Endorsement by a professional or recognized association or medical society or health care organization As recommended by the Canadian Medical Protective Association (CMPA), it is best to select mobile health applications that have been created or endorsed by a professional or recognized association or medical society.9 Some health care organizations, such as hospitals, may also develop or endorse applications for use in their clinical environments. There may also be mobile health applications associated with an EMR platform used by an organization or practice. Finally, some mobile health applications may have been subject to a peer review process distinct from endorsement by an association or organization. 2. Usability There are a number of usability factors than can complicate the use of mobile applications, including interface and design deficiencies, technological restrictions, and device and infrastructure malfunction. Many developers will release periodic updates and software patches to enhance the stability and usability of their applications. Therefore, it would be prudent for the physician recommending the mobile health application to also recommend to the patient that they determine if the application has been updated within the last year. Physicians considering recommending a mobile health application to a patient may wish to ask about the patient's level of comfort with mobile health technologies, their degree of computer literacy, whether or not the patient owns a mobile device capable of running the application, and whether or not the patient is able to bear potential one-time or ongoing costs associated with use of the application. Physicians may consider testing the application themselves beforehand to understand whether its functionality and interface make it easy to use. 3. Reliability of information Physicians considering recommending a mobile health application may wish to understand how the patient intends to use the information, and/or review the information with the patient to understand whether it is current and appropriate. Information presented by the mobile health application should be appropriately referenced and time-stamped with the last update by the application developer. 4. Privacy and security There are inherent security risks when a patient uses mobile health applications or enters sensitive information into their mobile device. Mobile devices can be stolen, and the terms of use for mobile health applications may include provisions for the sharing of information with the application developer and other third-parties, identified or un-identified, for commercial purposes. In 2014, the Officer of the Information and Privacy Commissioner of Alberta assessed approximately 1200 mobile applications and found nearly one-third of them required access to personal information beyond what should be required relative to their functionality and purpose, and that basic privacy information was not always made available.10 Physicians entering into and documenting a consent discussion with their patients may wish to include the electronic management of health information in the scope of these discussions, and make a notation of the discussion in the patient's health record. If physicians have not entered into and documented a general consent discussion, they may wish to indicate to the patient that there are security risks associated with mobile health applications, and recommend that the patient avail themselves of existing security features on their device. Physicians may wish to recommend to the patient that they determine whether a privacy policy has been made available which discloses how data is collected by the application and used by the developer, or a privacy impact assessment, which demonstrates the risks associated with the use of the application. Some mobile health applications may feature additional levels of authentication for use, such as an additional password or encryption protocols. If all other factors between applications are equal, physicians may wish to recommend that patients use mobile health applications adhering to this higher standard of security. 5. Avoids conflict-of-interest Physicians may wish to recommend that patients learn more about the company or organization responsible for the development of the application and their mandate. There is a risk of secondary gains by mobile health application developers and providers where information about patients and/or usage is gathered and sold to third parties. A standardized conflict of interest statement may be made available through the mobile health application or on the developer's website. If so, physicians may wish to refer the patient to this resource. Physicians who develop mobile applications for commercial gain or have a stake in those who develop applications for commercial gain may risk a complaint being made to the College on the basis that the physician engaged in unprofessional conduct if they recommend mobile health applications to their patients in the course of patient care. 6. Does not contribute to fragmentation of health information Some mobile health applications may link directly to an EMR, patient portal, or government data repository. These data resources may be standardized, linked, and cross-referenced. However, health information entered into an application may also be stored on a mobile device and/or the patient's home computer, or developers of mobile health applications may store information collected by their application separately. While there may be short-term benefits to using a particular mobile health application, the range of applications and developers may contribute to the overall fragmentation of health information. If all other factors between applications are considered equal, physicians may wish to recommend mobile health applications which contribute to robust existing data repositories, especially an existing EMR. 7. Demonstrates its impact on patient health outcomes While not all mobile health applications will have an appropriate scale of use and not all developers will have the capacity to collect and analyze data, physicians may wish to recommend mobile health applications that have undergone validation testing to demonstrate impact of use on patient health outcomes. If mobile health applications are claiming a direct therapeutic impact on patient populations, physicians may wish to recommend that their patients seek out or request resources to validate this claim. References 1 Canadian Medical Association. Physician guidelines for online communication with patients. Ottawa: The Association; 2005. Available: http://policybase.cma.ca/dbtw-wpd/PolicyPDF/PD05-03.pdf?_ga=1.32127742.1313872127.1393248073 2 US Food and Drug Administration, Center for Devices and Radiological Health, Center for Biologics Evaluation and Research. Mobile medical applications: guidance for industry and Food and Drug Administration staff. Rockville (MD): The Administration; 2015. Available: www.fda.gov/downloads/MedicalDevices/.../UCM263366.pdf 3 Canada Health Infoway. Mobile health computing between clinicians and patients. White paper. Toronto: The Infoway; 2014 Apr. Available: www.infoway-inforoute.ca/index.php/resources/video-gallery/doc_download/2081-mobile-health-computing-between-clinicians-and-patients-white-paper-full-report 4 iHealthBeat. 44M mobile health apps will be downloaded in 2012, report predicts. Available: www.ihealthbeat.org/articles/2011/12/1/44m-mobile-health-apps-will-be-downloaded-in-2012-report-predicts 5 Jahns R-G. 500m people will be using healthcare mobile applications in 2015. Research2guidance. Available: www.research2guidance.com/500m-people-will -be-using-healthcare-mobile-applications-in-2015/ 6 Lyver, M. Standards: a call to action. Future Practice. 2013 Nov. Available: www.cma.ca/Assets/assets-library/document/en/about-us/FP-November2013-e.pdf 7 Rich P. Medical apps: current status. Future Practice 2013 Nov. Available: www.cma.ca/Assets/assets-library/document/en/about-us/FP-November2013-e.pdf 8 Royal College of Physicians and Surgeons of Canada. The CanMEDS 2015 eHealth Expert Working Group report. Ottawa: The College; 2014. Available: www.royalcollege.ca/portal/page/portal/rc/common/documents/canmeds/framework/ehealth_ewg_report_e.pdf 9 Canadian Medical Protective Association. Managing information to delivery safer care. Ottawa: The Association; 2013. Available: https://oplfrpd5.cmpa-acpm.ca/en/duties-and-responsibilities/-/asset_publisher/bFaUiyQG069N/content/managing-information-to-deliver-safer-care 10 Office of the Information and Privacy Commissioner of Alberta. Global privacy sweep rasies concerns about mobile apps [news release]. Available: www.oipc.ab.ca/downloads/documentloader.ashx?id=3482

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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
: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2015 Nov 26). 10 Policy Document PD10-02 - Funding
  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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