With the advent of technology allowing for the extension of life, and as a result of the increasing importance of personal autonomy, decisional capacity, and informed consent and the growing awareness of issues related to quality of life and dying, Canadians have become increasingly interested in expressing their wishes regarding their health care and having more input into decisions about their care should they become incapable. Advance care planning (ACP) can help patients to achieve these goals.
The CMA supports development of a strategy for ACP1 in all provinces and territories. ACP leads to better concordance between patients' wishes and treatments provided,2,3 decreased anxiety for families,4 decreased moral distress for health care providers,5 decreased hospitalization rates of nursing home residents3 and fewer unnecessary medical treatments.3,6,7
ACP is at the intersection of the provision of health care, ethical values and legal rights and duties. In particular, it involves the acknowledgement of essential aspects of autonomy, informed consent, and respect of patients' care wishes now and in the future, and their intentions if they become incapable.8,9
The balancing of the need to obtain informed consent for a treatment option in the present with the need to respect health care preferences that were stated in the past has been addressed using various clinical, legal and institutional approaches across Canadian jurisdictions."
Physicians10 can play a significant role in ACP throughout the course of the patient-physician relationship, including in the pediatric setting. At any time, outcomes of the planning process can be documented and/or the patient can appoint a substitute decision-maker in writing. These documents can be identified as advance directives, personal directives or powers of attorney for personal care11 (hereinafter all will be referred to as advance directives). An advance directive does not remove the need for a physician to obtain consent before providing a treatment to a patient, except in an emergency. As stated in the Canadian Medical Protective Association's consent guide: "[U]nder medical emergency situations, treatments should be limited to those necessary to prevent prolonged suffering or to deal with imminent threats to life, limb or health. Even when unable to communicate in medical emergency situations, the known wishes of the patient must be respected."12
While much of the focus of ACP is on making care decisions and nominating proxy decision-makers in case the patient becomes incapable of making decisions in the future, ACP has much more utility. ACP conversations13 can assist patients in determining treatment trajectories and making decisions about the intensity level of interventions in their current care. Providers can have discussions with patients and their families about proposed treatments in the context of the patient's communicated goals and wishes. The process of ACP also helps patients and their families to become familiar with the language and processes used to make cooperative health care decisions.
SCOPE OF POLICY
This policy aims to provide guidance on key considerations pertinent to ACP in a way that is consistent with a physician's ethical, professional and legal obligations. This is a complex subject: physicians should be aware of the legislation in the jurisdiction in which they practise, the standards and expectations specified by their respective regulatory authority, as well as the policies and procedures of the setting(s) in which they practise (e.g., regional health authority, hospital).
1. ACP is a process of (a) respecting patients' wishes through reflection and communication, (b) planning for when the patient cannot make health care decisions and (c) discussion with friends, family and professionals; (d) it may result in a written document.5 It informs the substitute decision-maker and provides information for the clinician to consider in the provision of care within the bounds of the law.
2. Although often associated with the end of life, ACP represents the expression of a patient's wishes for any future health care when the patient is incapable. It expresses the patient's values and beliefs regarding current care decisions and provides information that can inform any decisions that must be made during an emergency when the patient's consent cannot be obtained. For these reasons, ACP should occur throughout a person's lifetime.
3. Respect for patients' dignity and autonomy is a cornerstone of the therapeutic physician-patient relationship. Patients' right to autonomous decision-making has become embedded in ethical frameworks, consent legislation and case law.14 Respect for the wishes of an incapable patient constitutes a preservation of autonomy and promotes trust between the physician and patient.15
4. The way in which the act of obtaining consent is weighed against the patient's stated wishes as outlined during the ACP process varies according to the jurisdiction in which the patient and physician are located.
1. Given the practical, ethical and legal complexities of ACP, physicians, medical learners should be supported in becoming familiar with ACP and comfortable in engaging in the process with their patients. To this end, CMA supports the development of training in ACP and efforts to make it available to all physicians and medical learners.16 For practising physicians and residents, many resources are available, for example:
a. Advance Care Planning in Canada: A National Framework
b. Facilitating Advance Care Planning: An Interprofessional Educational Program
c. Information from the Health Law Institute of Dalhousie University on the regulatory policies and legislation of individual provinces and territories
d. A comprehensive collection of Canadian resources compiled by the Speak Up campaign of the Advance Care Planning in Canada initiative
e. Pallium Canada's Learning Essential Approaches to Palliative Care module on ACP
In the case of medical students, the CMA supports the position of the Canadian Federation of Medical Students that end-of-life training is an essential facet of undergraduate medical education.
2. The issue of the supervision of medical learners practising ACP should be clarified, as considerable ambiguity currently exists.17 Medical learners would benefit from unified national guidelines concerning the nature of their participation in ACP, especially regarding end-of-life care. In the case of medical students, the CMA agrees with the recommendation of the Canadian Federation of Medical Students that supervision be mandatory during conversations about end-of-life care.
3. The CMA calls for more research on the outcomes associated with the provision of ACP training to physicians and medical learners.
4. The CMA recommends that governments and institutions promote information and education on ACP to patients and their substitute decision-makers.
PROFESSIONAL AND LEGAL RESPONSIBILITY
1. While respecting patients' values, all physicians are expected to encourage their patients to engage in ACP with them. ACP is not a one-time event. The nature of the conversation between the physician and the patient and the regularity with which they discuss the subject will depend on the patient's health status. Family physicians and physicians have ongoing care relationships with chronically ill patients are particularly well placed to have regular discussions with their patients about their beliefs, values and wishes. An effective exchange of information between family physicians (and other physicians who work in the community with outpatients) and acute or tertiary care physicians would assist in ensuring patient's wishes are considered.
2. ACP, in particular advance directives, are at the intersection of medicine and the law. Physicians should recognize this and ask patients whether they have an advance directive or have done any ACP.
3. There is wide variation across jurisdictions in terms of the requirements and procedures for ACP; therefore, physicians should inform themselves about any relevant legislation and the scope of the requirement to obtain consent within that jurisdiction when carrying out ACP.
1. The CMA supports institutional processes that recognize and support ACP. Support for ACP includes developing a consistent process for the exchange of information about patients' wishes and advance directives among health care providers, as patients traverse sectors and locations of care. Patients with a written advance directive must be identified and the advance directive integrated fully within the patient's records18 so that it is available across the institution (and ideally the health care system). The CMA advocates for the inclusion of advance care directive functionality as a conformance and usability requirement for electronic medical record vendors.19 Provinces and territories should be encouraged to establish robust organizational processes and resources for patients in all locations of care and strong province- or territory-wide policy, such as in Alberta.20
2. Institutions and other organizations should encourage health care providers to ask patients to bring their advance directive to appointments at the same time they ask them to bring a list of their medications or other medical information.
3. The CMA supports institutional/organizational audits of structures, processes and outcomes related to ACP as an important step in improving the quality and frequency of ACP activities.
ROLE FOR GOVERNMENTS
1. The CMA supports infrastructures enabling ACP, including funding that will support ACP and other end-of-life discussions.
2. The CMA promotes the incorporation of ACP into future federal and provincial/territorial senior strategies and dementia and/or frailty strategies.
3. The CMA supports the development of ACP metrics and their future inclusion in Accreditation Canada standards.
Advance care planning (ACP)
Advance care planning is a term used to describe a process of reflection, communication, conversation and planning by a capable individual with family, friends and professionals about their beliefs, values and wishes for a time when they no longer have the mental capacity to make decisions about their health care. ACP can also involve the naming of a substitute decision-maker.8
The legislated term "advance directive" has different names, definitions and legal authority across the country. For example, in British Columbia an advance directive is a written legal document that provides a mechanism for capable patients to give directions about their future health care once they are no longer capable. 21 As such, in BC an advance directive may, under certain circumstances, be considered "equivalent to consent to treatment and may be acted upon directly by a health care provider without consultation with an SDM [substitute decision-maker]." 8 In Alberta it is called a personal directive. In Ontario, "advance directive" is a generic non-legal term and refers to communications that may be oral, written or in other forms.8
In Quebec, advance care directives are legally binding, as set out in the Act respecting end-of-life care, which recognizes "the primacy of freely and clearly expressed wishes with respect to care. . ."22
Current legislation does not allow for medical assistance in dying to be requested by an advance directive.23 The CMA acknowledges that considerable public, expert and legal debate exists around the issue.
To obtain informed consent, physicians must provide adequate information to the patient or capable decision-maker about the proposed procedure or treatment; the anticipated outcome; the potential risks, benefits and complications; and reasonable available alternatives, including not having the treatment; and they must answer questions posed by the patient. Consent is only informed if there is disclosure of matters that a reasonable person in the same circumstances would want to know.24 Consent must be given voluntarily, must not be obtained through misrepresentation or fraud, must relate to the treatment and must be informed.
Substitute decision-maker (SDM or agent or proxy)
A substitute decision-maker is a capable person who will make health care decisions on behalf of an incapable individual. In all jurisdictions the health care provider must take reasonable steps to become aware of whether or not there is a substitute decision-maker before providing health treatment to an incapable patient. Legally there are implementation differences across the country. For example, in BC a substitute decision-maker is appointed through a representation agreement, in Alberta through a personal directive and in Ontario through a power of attorney for personal care.
Approved by the CMA Board of Directors May 2017
1 Canadian Medical Association. Policy resolution GC14-25 - strategy for advance care planning, palliative and end-of-life care. Ottawa (ON): The Association; 2014. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2016 Oct 17)
2 Houben CHM, Spruit MA, Groenen MTJ, et al. Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc 2014;15:477-89.
3 Martin RS, Hayes B, Gregorevic K, et al. The effects of advance care planning interventions on nursing home residents: a systematic review. J Am Med Dir Assoc 2016;7:284-93.
4 Mack JW, Weeks JC, Wright AA, et al. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol 2010;28(7):1203-8.
5 Canadian Hospice Palliative Care Association. Advance care planning in Canada: national framework. Ottawa; The Association; 2010.
6 Teo WSK, Raj AG, Tan WS, et al. Economic impact analysis of an end-of-life programme for nursing home residents. Palliat Med 2014;28(5):430-7.
7 Zhang B, Wright AA, Huskamp HA, et al. Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med 2009;169(5):480-8.
8 Wahl J, Dykeman MJ, Gray B. Health care consent and advance care planning in Ontario. Toronto (ON): Law Commission of Ontario; 2014.
9 Canadian Medical Association. CMA Code of Ethics (update 2004). Ottawa: The Association; 2004.
10 Physician involvement is not mandatory in the process. However, it is important for physicians to engage with their patients in ACP as this can facilitate change in patients' ACP behaviour and understanding.
11 Wahl JA, Dykeman MJ, Walton T. Health care consent, advance care planning, and goals of care practice tools: the challenge to get it right. Improving the last stages of life. Toronto (ON): Law Commission of Ontario; 2016.
13 Frank C, Puxty J. Facilitating effective end-of-life communication - helping people decide. CJS Journal of CME 2016;6(2). Available: http://canadiangeriatrics.ca/wp-content/uploads/2017/02/Facilitating-Effective-End-of-Life-Communication---Helping-People-Decide.pdf (accessed 2017 April 25).
14 Fleming v Reid (1991) 82 DLR (4th) 298 (CA ON); Cuthbertson v Rasouli, 2013 SCC 53; Malette v Shulman (1990), 72 OR (2d) 417; Starson v Swayze (2003) 1 SCR 722.
15 Harmon SHE. Consent and conflict in medico-legal decision-making at the end of life: a critical issue in the Canadian context. University of New Brunswick Law Journal 2010;60(1):208-29.
16 Canadian Medical Association. Policy resolution GC13-69 - training in advance care planning. Ottawa (ON): The Association; 2013. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2016 May 26).
17 Touchie C, De Champlain A, Pugh D, et al. Supervising incoming first-year residents: faculty expectations versus residents' experiences. Med Educ 2014;48(9):921-9.
18 Canadian Medical Association. Policy resolution GC14-19 - advance care plans. Ottawa (ON): The Association; 2014. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2016 May 26).
19 Canadian Medical Association. BD14-05-163 Advance care directive functionality. Ottawa (ON): The Association; 2014. Available: policybase.cma.ca/dbtw-wpd/CMAPolicy/PublicB.htm (accessed 2016 May 26).
20 Conversations matter. Edmonton (AB): Alberta Health Services. Available: http://goals.conversationsmatter.ca.s3-website-us-east-1.amazonaws.com/ (accessed 2017 May 19).
21 Health Care (Consent) and Care Facility (Admission) Act, RSBC 1996, c 181, s.3
22 Act respecting end-of-life care, S-32.0001. Government of Quebec. Available : http://legisquebec.gouv.qc.ca/en/ShowDoc/cs/S-32.0001
23 An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying) S.C. 2016, c.3. Ottawa: Government of Canada; 2016. Available: http://canlii.ca/t/52rs0 (accessed 2016 Oct 17)
24 Riebl v Hughes,  2 SCR 880; Hopp v Lepp,  2 SCR 192.
Canadians are living longer, healthier lives than ever before. The number of seniors expected to need help or care in the next 30 years will double, placing an unprecedented challenge on Canada’s health care system. That we face this challenge speaks to the immense success story that is modern medicine, but it doesn’t in any way minimize the task ahead.
Publicly funded health care was created about 50 years ago when Canada’s population was just over 20 million and the average life expectancy was 71. Today, our population is over 36 million and the average life expectancy is 10 years longer. People 85 and older make up the fastest growing age group in our country, and the growth in the number of centenarians is also expected to continue.
The Canadian Medical Association is pleased that the House of Commons Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities is studying ways Canada can respond to these challenges. Here, for your consideration, we present 15 comprehensive recommendations that would help our seniors remain active, contributing citizens of their communities while improving the quality of their lives. These range from increasing capital investment in residential care infrastructure, to enhancing assistance for caregivers, to improving the senior-friendliness of our neighbourhoods.
The task faced by this committee, indeed the task faced by all of Canada, is daunting. That said, it is manageable and great advances can be made on behalf of seniors. By doing so, we will ultimately deliver both health and financial benefits to all Canadians.
Dr. Laurent Marcoux, CMA President
The Canadian Medical Association (CMA) is pleased to submit this brief to the Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities as part of its study regarding how the Government can support vulnerable seniors today while preparing for the diverse and growing seniors population of tomorrow. This brief directly addresses the three themes considered by this Committee:
How the Government can improve access to housing for seniors including aging in place and affordable and accessible housing;
How the Government can improve income security for vulnerable seniors; and
How the Government can improve the overall quality of life and well-being for seniors including community programming, social inclusivity, and social determinants of health.
Improving access to housing for seniors
As part of a new National Housing Strategy, the federal government announced in the 2017 Budget that it will invest more than $11.2 billion in a range of initiatives designed to build, renew, and repair Canada’s stock of affordable housing and help to ensure that Canadians have adequate and affordable housing that meets their needs. While a welcome step, physicians continue to see the problems facing seniors in relation to a lack of housing options and supports — problems that cascade across the entire health care system.
A major hindrance to social equity in health care delivery and a serious cause of wait times is the inappropriate placement of patients, particularly seniors, in hospitals. Alternate level of care (ALC) beds are often used in acute care hospitals to accommodate patients — most of whom are medically stable seniors — waiting for appropriate levels of home care or access to a residential care home/facility. High rates of ALC patients in hospitals affect all patients by contributing to hospital overcrowding, lengthy waits in emergency departments, delayed hospital admissions, cancelled elective surgeries, and sidelined ambulance services waiting to offload new arrivals (often referred to as code gridlock).1 Moreover, unnecessarily long hospital stays can leave patients vulnerable to hospital-acquired illnesses and disabilities such as delirium, deconditioning, and falls.
Daily costs - Ontario
$842: acute care hospital, per patient
$126: long-term care residence, per patient
$42: home care, per patient
# of acute care hospital beds = 18,571 14% waiting for placement = 2,600 beds
Providing more cost-effective and appropriate solutions will optimize the use of health care resources. It has been estimated that it costs $842 per day for a hospital bed versus $126 per day for a long-term care bed and $42 per day for care at home.2 An investment in appropriate home or residential care, which can take many forms, will alleviate inappropriate hospital admissions and facilitate timely discharges.
The residential care sector is facing significant challenges because of the rising numbers of older seniors with increasingly complex care needs. The demand for residential care will increase significantly over the next several years because of the growing number of frail elderly seniors requiring this service. New facilities will need to be constructed and existing facilities will need to be upgraded to comply with enhanced regulatory requirements and respond to residents’ higher care needs.
The Conference Board of Canada has produced a residential care bed forecast tied to population growth of age cohorts. It is estimated that Canada will require an average of 10,500 new beds per year over the next 19 years, for a total of 199,000 new beds by 2035. This forecast does not include the investments needed to renovate and retrofit existing long-term care homes.3 A recent report by the Canadian Institute for Health Information indicated that residential care capacity must double over the next 20 years (assuming no change in how care is currently provided), necessitating a transformation in how seniors care is provided across the continuum of care.4 These findings provide a sense of the immense challenges Canada faces in addressing the residential care needs of older seniors.
Investments in residential care infrastructure and continuing care will improve care for seniors while significantly reducing wait times in hospitals and across the system, benefiting all patients. Efforts to de-hospitalize the system and address the housing and residential care options for Canada’s aging population are key. The federal government can provide significant pan-Canadian assistance by investing in residential care infrastructure.
The CMA recommends that the federal government include capital investment in residential care infrastructure, including retrofit and renovation, as part of its commitment to invest in social infrastructure.
Improving income security for vulnerable seniors
Income is a key factor impacting the health of individuals and communities. Higher income and social status are linked to better health.5
Adequate Income: Poverty among seniors in Canada dropped sharply in the 1970s and 1980s but it has been rising in recent years. In 2012, the incidence of low income among people aged 65 years and over was 12.1%. This rate was considerably higher for single seniors at 28.5%.6
Incidence of low income (2012)
Seniors overall: 12.1%
Single seniors: 28.5%
Most older Canadians rely on Old Age Security (OAS), the Canada Pension Plan (CPP), and their personal pensions or investments to maintain their basic standard of living in retirement. Some seniors are also eligible for a Guaranteed Income Supplement (GIS) to improve their financial security. The CMA recognizes the federal government’s actions to strengthen these programs and initiatives to ensure their viability and to provide sustainable tax relief. These measures must continue and evolve to support aging Canadians so they can afford to live at home or in age-friendly communities as they get older. The government’s actions to ensure adequate income support will also assist aging Canadians to take care of their health, maintain independence, and continue living safely without the need for institutional care.
On the topic of seniors’ income security, the financial abuse of seniors cannot be overlooked. Elder abuse can take many forms: financial, physical, psychological, sexual, and neglect. Often the abuser is a family member, friend, or other person in a position of trust. Researchers estimate that 4 to 10% of Canadian seniors experience abuse or neglect, but that only a small portion of this is reported. The CMA supports public awareness initiatives that bring attention to elder abuse, as well as programs to intervene with seniors who are abused and with their abusers.
The CMA recommends that the federal government take steps to provide adequate income support for older Canadians, as well as education and protection from financial abuse.
Improving the overall quality of life and well-being for seniors
Improving how we support and care for Canada’s growing seniors population has been a priority for CMA over the past several years. For the first time in Canada’s history, persons aged 65 years and older outnumber those under the age of 15 years.7 Seniors are projected to represent over 20% of the population by 2024 and up to 25% of the population by 2036.8 People aged 85 years and over make up the fastest growing age group in Canada — this portion of the population grew by 127% between 1993 and 2013.9 Statistics Canada projects, on the basis of a medium-growth scenario, that there will be over 11,100 Canadians aged 100 years and older by 2021, 14,800 by 2026 and 20,300 by 2036.7
Though age does not automatically mean ill health or disability, the risk of both increases with age. Approximately 75 to 80% of Canadian seniors report having one or more chronic conditions.10 Because of increasing rates of disability and chronic disease, the demand for health services is expected to increase as Canada’s population ages. The Conference Board of Canada has estimated 2.4 million Canadians 65 years and older will need continuing care, both paid and unpaid, by 2026 — a 71% increase since 2011.11
When publicly funded health care was created about 50 years ago, Canada’s population was just over 20 million and the average life expectancy was 71. Today, our population is over 36 million and the average life expectancy is 10 years longer. The aging of our population is both a success story and a pressing health policy issue.
National seniors strategy
Canada needs a new approach to ensure that both our aging population and the rest of Canadians can get the care they need, when and where they need it. The CMA believes that the federal government should invest in seniors care now, guided by a pan-Canadian seniors strategy. In doing so, it can help aging Canadians be as productive as possible — at work, in their communities, and in their homes.
The CMA is pleased with the June 2017 Report of the Standing Senate Committee on National Finance that called for the federal government to develop, in collaboration with the provinces and territories and Indigenous partners, a national seniors strategy in order to control spending growth while ensuring appropriate and accessible care.12 The CMA is also pleased that MP Marc Serré (Nickel Belt) secured support for his private members’ motion calling for the development of a national seniors strategy. Over 50,000 Canadians have already lent their support to this cause (see www.DemandaPlan.ca).
The CMA recommends that the federal government provide targeted funding to support the development of a pan-Canadian seniors strategy to address the needs of the aging population.
Improving assistance for home care and Canada’s caregivers
Many of the services required by seniors, in particular home care and long-term care, are not covered by the Canada Health Act. Funding for these services varies widely from province to province. The disparity among the provinces in terms of their fiscal capacity in the current economic climate will mean improvements in seniors care will advance at an uneven pace. The funding and delivery of accessible home care services will help more aging Canadians to recover from illness, live at home longer, and contribute to their families and communities. Multi-year funding arrangements to reinforce commitment to and financial investment in home care should be carefully considered.13 The development of innovative partnerships and models to help ensure services and resources for seniors’ seamless transition across the continuum of care are also important.
The CMA recommends governments work with the health and social services sectors, and with private insurers, to develop a framework for the funding and delivery of accessible and sustainable home care and long-term care services.
Family and friend caregivers are an extremely important part of the health care system. A 2012 Statistics Canada study found that 5.4 million Canadians provided care to a senior family member or friend, and 62% of caregivers helping seniors said that the care receiver lived in a private residence separate from their own.14 According to a report by Carers Canada, the Canadian Home Care Association, and the Canadian Cancer Action Network, caregivers provide an array of services including personal and medical care, housekeeping, advocacy, financial management, and social/emotional support. The report also indicated that caregivers contribute $25 billion in unpaid labour to our health system.15 Given their enormous contributions, Canada’s caregivers need support in the form of financial assistance, education, peer support, and respite care. A pan-Canadian caregiver strategy is needed to ensure caregivers are provided with the support they require.15
Personal and Medical Care
worth $25 billion in
Social-emo ional Suppor
The CMA recommends that the federal government and other stakeholders work together to develop and implement a pan-Canadian caregiver strategy, and expand the support programs currently offered to informal caregivers.
Canadians want governments to do more to help seniors and their family caregivers.16 The federal government’s new combined Canada Caregiver Credit
(CCC) is a non-refundable credit to individuals caring for dependent relatives with infirmities (including persons with disabilities). The CCC will be more accessible and will extend tax relief to more caregivers by including dependent relatives who do not live with their caregivers and by increasing the income threshold. Making the new CCC a refundable tax credit for caregivers whose tax owing is less than the total credit would result in a refund payment to provide further financial support for low-income families.
The CMA recommends that the federal government improve awareness of the new Canada Caregiver Credit and amend it to make it a refundable tax credit for caregivers.
The federal government’s recent commitment to provide $6 billion over 10 years to the provinces and territories for home care, including support for caregivers, is a welcome step toward improving opportunities for seniors to remain in their homes. As with previous bilateral funding agreements, it is important to establish clear operating principles between the parties to oversee the funding implementation and for the development of clear metrics to measure performance.
The CMA recommends that the federal government develop explicit operating principles for the home care funding that has been negotiated with the provinces and territories to recognize funding for caregivers and respite care as eligible areas of investment.
The federal government’s recent funding investments in home care and mental health recognize the importance of these aspects of the health care system. They also signal that Canada has under-invested in home and community-based care to date. Other countries have more supportive systems and programs in place — systems and programs that Canada should consider.
The CMA recommends the federal government convene an all-party parliamentary international study that includes stakeholders to examine the approaches taken to mitigate the inappropriate use of acute care for elderly persons and provide support for caregivers.
Programs and supports to promote healthy aging
The CMA believes that governments at all levels should invest in programs and supports to promote healthy aging, a comprehensive continuum of health services to provide optimal care and support to older Canadians, and an environment and society that is “age friendly”.17
The Public Health Agency of Canada (PHAC) defines healthy aging as “the process of optimizing opportunities for physical, social and mental health to enable seniors to take an active part in society without discrimination and to enjoy independence and quality of life.”18 It is believed that initiatives to promote healthy aging and enable older Canadians to maintain their health will help lower health care costs by reducing the overall burden of disability and chronic disease. Such initiatives should focus on physical activity, good nutrition, injury (e.g. falls) prevention, and seniors’ mental health (including depression).
The CMA recommends that governments at all levels support programs to promote physical activity, nutrition, injury prevention, and mental health among older Canadians.
For seniors who have multiple chronic diseases or disabilities, care needs can be complex, and they may vary greatly from one person to another and involve many health care providers. Complex care needs demand a flexible and responsive health system. The CMA believes that quality health care for older Canadians should be delivered on a continuum from community-based health care (e.g. primary health care, chronic disease management programs), to home care
(e.g. visiting health care workers to give baths and foot care), to long-term care and palliative care. Ideally, this continuum should be managed so that the senior can remain at home and out of emergency departments, hospitals, and long-term care unless appropriate; easily access necessary care; and make a smooth transition from one level of care to another when necessary.
The CMA recommends governments and other stakeholders work together to develop and implement models of integrated, interdisciplinary health service delivery for older Canadians.
Every senior should have the opportunity to have a family physician or to be part of a family practice that serves as a medical home. This provides a central hub for the timely provision and coordination of the comprehensive menu of health and medical services. A medical home should provide patients with access to medical advice and the provision of, or direction to, needed care 24 hours a day, seven days a week, 365 days a year. Research in 2014 by the Commonwealth Fund found that the percentage of Canadian seniors who have a regular family physician or place of care is very high (98%); however, their ability to get timely access based on same-day or next-day appointments was among the lowest of 11 nations.19 Compared to seniors in most other countries surveyed, Canadian seniors were also more likely to use the emergency department and experience problems with care coordination.
The CMA recommends governments continue efforts to ensure that older Canadians have access to a family physician, supported by specialized geriatric services as appropriate.
Prescription drugs represent the fastest-growing item in the health budget and the second-largest category of health expenditure. As the population of seniors grows, there will be an ongoing need for detailed information regarding seniors’ drug use and expenditure to support the overall management of public drug programs.20 Despite some level of drug coverage for seniors in all provinces and territories, some seniors still skip doses or avoid filling prescriptions due to cost, and more research into the extent of this problem is required.21 The CMA supports the development of an equitable and comprehensive pan-Canadian pharmacare program. As a step toward comprehensive, universal coverage, the CMA has repeatedly called on the federal government to implement a system of catastrophic coverage for prescription medication to reduce cost barriers of treatment and ensure Canadians do not experience undue financial hardship. Moreover, with more drugs available to treat a large number of complex and chronic health conditions, the CMA supports the development of a coordinated national approach to reduce polypharmacy among the elderly.
The CMA recommends governments and other stakeholders work together to develop and implement a pan-Canadian pharmaceutical strategy that addresses both comprehensive coverage of essential medicines for all Canadians, and programs to encourage optimal prescribing and drug therapy.
Optimal care and support for older Canadians also depends on identifying, adapting, and implementing best practices in the care of seniors. PHAC’s Best Practices Portal22 is one noteworthy initiative, and the system needs to spread and scale best practices by leveraging and enhancing pan-Canadian resources that build capacity and improve performance in home care and other sectors.13
The CMA recommends that governments and other stakeholders support ongoing research to identify best practices in the care of seniors, and monitor the impact of various interventions on health outcomes and costs.
An environment and society that is “age friendly”
One of the primary goals of seniors policy in Canada is to promote the independence of older Canadians, avoiding costly institutionalization for as long as feasible. To help older Canadians successfully maintain their independence, governments and society must keep the social determinants of health in mind when developing and implementing policy that affects seniors. It is also important to eliminate discrimination against seniors and promote positive messaging around aging. An age-friendly society respects the experience, knowledge, and capabilities of its older members and accords them the same worth and dignity as it does other citizens.
Employment is also important for seniors who need or desire it. Many seniors are choosing to remain active in the workplace for a variety of reasons, such as adding to their financial resources or staying connected to a social network.23 The CMA recognizes the federal government’s support for seniors who opt to continue working. And, while many employers encourage older workers and accommodate their needs, employment may be difficult to find in workplaces that are unwilling to hire older workers.
The CMA recommends that governments at all levels and other partners give older Canadians access to opportunities for meaningful employment if they desire.
The physical environment, including the built environment, can help to promote seniors’ independence and successful, healthy aging. The World Health Organization defines an “age-friendly environment” as one that fosters health and well-being and the participation of people as they age.24 Age-friendly environments are accessible, equitable, inclusive, safe and secure, and supportive. They promote health and prevent or delay the onset of disease and functional decline. They provide people-centered services and support to enable recovery or to compensate for the loss of function so that people can continue to do the things that are important to them.24 These factors should be taken into consideration by those who design and build communities. For example, buildings should be designed with entrance ramps and elevators; sidewalks could have sloping curbs for walkers and wheelchairs; and frequent, accessible public transportation should be provided in neighbourhoods with large concentrations of seniors.
The CMA recommends that governments and communities take the needs of older Canadians into account when designing buildings, walkways, transportation systems, and other aspects of the built environment.
The CMA recognizes the federal government’s commitment to support vulnerable seniors today while preparing for the diverse and growing seniors’ population of tomorrow. The CMA’s recommendations in this submission can assist the government as it seeks to improve access to housing for seniors, enhance income security for vulnerable seniors, and improve the overall quality of life for seniors in ways that will help to advance inclusion, well-being, and the health of Canada’s aging population.
To maximize the health and well-being of older Canadians, and ensure their active engagement and independence for as long as possible, the CMA believes that the health care system, governments, and society should work with older Canadians to promote healthy aging, provide quality patient-centred health care and support services, and build communities that value Canadians of all ages.
1 Simpson C. Code Gridlock: Why Canada needs a national seniors strategy. Address to the Canadian Club of Ottawa by Dr. Christopher Simpson, President, Canadian Medical Association; 2014 Nov. 18; Ottawa, Ontario. Available: https://www.cma.ca/En/Lists/Medias/Code_Gridlock_final. pdf#search=code%20gridlock (accessed 2016 Sep 22).
2 North East Local Health Integration Network. HOME First shifts care of seniors to HOME. LHINfo Minute, Northeastern Ontario Health Care Update. Sudbury: The Network; 2011. Cited by Home Care Ontario. Facts & figures - publicly funded home care. Hamilton: Home Care Ontario; 2017 Jun. Available: http://www.homecareontario.ca/home-care-services/facts-figures/publiclyfundedhomecare (accessed 2016 Sep 22).
3 Conference Board of Canada. A cost-benefit analysis of meeting the demand for long-term care beds. Ottawa: Conference Board of Canada; Manuscript submitted for publication.
4 Canadian Institute for Health Information (CIHI). Seniors in transition: exploring pathways across the care continuum. Ottawa: The Institute; 2017. Available: https://www.cihi.ca/sites/default/files/document/seniors-in-transition-report-2017-en.pdf (accessed 2017 Jun 30).
5 World Health Organization. Health Impact Assessment (HIA). The determinants of health. Available: http://www.who.int/hia/evidence/doh/en/ (accessed 2017 Oct 23).
6 Statistics Canada. Persons in low income (after-tax low income measure), 2012. The Daily. Ottawa: Statistics Canada; 2014 Dec 10. Available: http://www.statcan.gc.ca/daily-quotidien/141210/t141210a003-eng.htm (accessed 2017 Oct 17).
7 Statistics Canada. Population projections: Canada, the provinces and territories, 2013 to 2063. The Daily. Ottawa: Statistics Canada; 2014 Sep 17. Available: http://www.statcan.gc.ca/daily-quotidien/140917/dq140917a-eng.pdf (accessed 2016 Sep 19).
8 Statistics Canada. Canada Year Book 2012, seniors. Ottawa: Statistics Canada; 2012. Available: https://www.statcan.gc.ca/pub/11
402-x/2012000/chap/seniors-aines/seniors-aines-eng.htm (accessed 2017 Oct 18).
9 Public Health Agency of Canada. The Chief Public Health Officer’s report on the state of public health in Canada, 2014: public health in the future. Ottawa: Public Health Agency of Canada; 2014. Available: https://www.canada.ca/content/dam/phac-aspc/migration/phac-aspc/ cphorsphc-respcacsp/2014/assets/pdf/2014-eng.pdf (accessed 2016 Sep 19).
10 Canadian Institute for Health Information (CIHI). Health Care in Canada, 2011: A Focus on Seniors and Aging. Ottawa: The Institute; 2014 Nov. Available: https://secure.cihi.ca/free_products/HCIC_2011_seniors_report_en.pdf (accessed 2016 Sept 19).
11 Stonebridge C, Hermus G, Edenhoffer K. Future care for Canadian seniors: a status quo forecast. Ottawa: Conference Board of Canada; 2015. Available: http://www.conferenceboard.ca/e-library/abstract.aspx?did=7374 (accessed 2016 Sep 20).
12 Report of the Standing Senate Committee on National Finance. Getting ready: For a new generation of active seniors. Ottawa: The Committee; 2017 Jun. Available: https://sencanada.ca/content/sen/committee/421/NFFN/Reports/NFFN_Final19th_Aging_e.pdf (accessed 2017 Oct 18).
13 Canadian Home Care Association, The College of Family Physicians of Canada, Canadian Nurses Association. Better Home Care in Canada: A National Action Plan. 2016. Ottawa: Canadian Home Care Association, The College of Family Physicians of Canada, Canadian Nurses Association; 2016. Available: http://www.thehomecareplan.ca/wp-content/uploads/2016/10/Better-Home-Care-Report-Oct-web.pdf (accessed 2017 Oct 23).
14 Turcotte M, Sawaya C. Senior care: differences by type of housing. Insights on Canadian society. Cat. No. 75-006-X. Ottawa: Statistics Canada; 2015 Feb 25. Available: http://www.statcan.gc.ca/pub/75-006-x/2015001/article/14142-eng.pdf (accessed 2016 Sep 22).
15 Carers Canada, Canadian Home Care Association, Canadian Cancer Action Network. Advancing Collective Priorities: A Canadian Carer Strategy. 2017. Mississauga: Canadian Home Care Association, Canadian Cancer Action Network; 2017. Available: http://www.cdnhomecare.ca/media. php?mid=4918 (accessed 2017 Oct 23).
16 Ipsos Public Affairs, HealthCareCAN, Canadian College of Health Leaders. National Health Leadership Conference report. Toronto: Ipsos Public Affairs; 2016 Jun 6. Available: http://www.nhlc-cnls.ca/assets/2016%20Ottawa/NHLCIpsosReportJune1.pdf (accessed 2016 Jun 06).
17 Canadian Medical Association. Health and Health Care for an Aging Population. Ottawa: The Association; December 2013. Available: https:// www.cma.ca/Assets/assets-library/document/en/advocacy/policy-research/CMA_Policy_Health_and_Health_Care_for_an_Aging-Population_ PD14-03-e.pdf (accessed 2017 Oct 20).
18 Government of Canada. The Chief Public Health Officer’s Report on the State of Public Health in Canada 2010 – Canada’s experience in setting the stage for healthy aging. Ottawa: Government of Canada; 2014. Available: https://www.canada.ca/en/public-health/corporate/publications/ chief-public-health-officer-reports-state-public-health-canada/annual-report-on-state-public-health-canada-2010/chapter-2.html (accessed 2017 Oct 23).
19 Commonwealth Fund. 2014 International Health Policy Survey of Older Adults in Eleven Countries. 2014. New York: Commonweath Fund; 2014. Available: http://www.commonwealthfund.org/~/media/files/publications/in-the-literature/2014/nov/pdf_1787_commonwealth_fund_2014_intl_ survey_chartpack.pdf (accessed 2017 Oct 23).
20 Canadian Institute for Health Information. Drug Use among Seniors on Public Drug Programs in Canada, 2002 to 2008. (2010). Ottawa: The Institute; 2010. Available: https://secure.cihi.ca/free_products/drug_use_in_seniors_2002-2008_e.pdf (accessed 2017 Oct 23).
21 Law MR, Cheng L, Dhalla IA, Heard D, Morgan SG. The effect of cost on adherence to prescription medications in Canada. CMAJ. 2012 Feb21;184(3):297-302. Available: http://www.cmaj.ca/content/184/3/297.short. (accessed 2017 Oct 23).
22 Public Health Agency of Canada. Canadian Best Practices Portal. Ottawa: Public Health Agency of Canada; 2016. Available: http://cbpp-pcpe. phac-aspc.gc.ca/public-health-topics/seniors/ (accessed 2017 Oct 23).
23 Government of Canada. Action for Seniors report. 2014. Ottawa: Government of Canada; 2014. Available: https://www.canada.ca/en/ employment-social-development/programs/seniors-action-report.html (accessed 2017 Oct 23).
24 World Health Organization (WHO). Age-friendly environments. Geneva: WHO; 2017. Available: http://www.who.int/ageing/projects/age
friendly-environments/en/ (accessed 2017 Oct 23).
What is it?
The CMA Charter of Shared Values aims to identify shared values and commitments to each other and to the profession to which physicians and learners can commit to promote trust and respect within the profession and for each other, and identify opportunities for engagement and leadership to promote civility and confront incivility within the profession.
Why does it matter?
The Charter is intended to further strengthen professional responsibilities in support of a unified and aligned profession. We achieve the highest degree of both individual and collective success when we work together, commit together and believe together; when we share a clearly articulated set of common values, virtues and principles; and when we subscribe to the same explicit and implicit understandings.
Commitments to Each Other:
Our most important shared values
As a physician, I will strive to be respectful; I will recognize that everyone has inherent worth, is worthy of dignity, and has the right to be valued and respected, and to be treated ethically; I will respect others and their personal and professional dignity; and I will aim to promote and model respect through collaborative training and practice.
As a physician, I will strive to act with integrity; I will act in an honest and truthful manner, with consistency of intentions and actions; and I will act with moral concern to promote and model effective leadership and to achieve a good outcome for patients.
As a physician, I will strive to cultivate reciprocal relationships; I will be kind with my physician colleagues, and expect them to respond similarly; I will share and exchange my knowledge and experience with them; and I will be generous with them in spirit and in time.
As a physician, I will strive to be civil; I will respect myself and others, regardless of their role, even those with whom I may not agree; I will enter into communication with my physician colleagues with an attitude of active and open listening, whether it be in person, in writing, or virtually; and I will accept personal accountability.
Commitments to the Profession
1. Commitment to promoting a culture of respect and collegiality
As a physician, I will strive to build a culture based on mutual respect and collegiality where physicians treat each other as people in a shared endeavor, and promote civility. I will strive to:
Cultivate respectful, open, and transparent dialogue and relationships
Take responsibility for promoting civility and confronting incivility within the profession
Recognize the relative value among family medicine and specialties and across the educational spectrum, and of the profession’s shared contributions within health systems
Model healthy and supportive training and practice environments
2. Commitment to promoting a culture of self-care and support
As a physician, I will strive to build a culture of self-care and support where physicians are empowered to ask for help and are supported to care for their own physical, mental, and social well-being. I will strive to:
Value physician health and wellness and promote a professional culture that recognizes, supports, and responds effectively to your needs and colleagues in-need
Cultivate an environment of physical and psychological safety, conducive to challenging the status quo, as well as encouraging help-seeking behaviours, without fear of negative reprisal
Recognize that both individual and system-level barriers contribute to health and wellness-related issues and advocate for cultural and systemic change to remove barriers
3. Commitment to promoting a culture of leadership and mentorship
As a physician, I will strive to foster a culture of leadership and mentorship across the career life cycle. I will strive to:
Encourage and enable opportunities and participation in leadership roles across all levels of training, practice, and health system delivery
Promote and enable formal and informal mentorship opportunities and leadership training across all levels of training and practice
Value the exchange of knowledge and experience and encourage reflective relationships (bi-directional) across all levels of training and practice
4. Commitment to promoting a culture of inquiry and reflection
As a physician, I will strive to foster a culture of inquiry and reflection that values and enables reflective practice, individually and collectively. I will strive to:
Value and enable collective inquiry and self-reflection to effect meaningful change
Foster curiosity and exploration to identify strengths and capabilities of teams and health systems to generate new possibilities for action
Cultivate strong connections and relationships between, and meaningful interactions with, colleagues
5. Commitment to promoting a culture of quality
As a physician, I will strive to foster a culture of quality and quality improvement. I will strive to:
Foster intra- and inter-professional collaborations and promote collaborative models of care
Provide high quality patient care and have a view to continuous improvement at the practice and system level, and commit to developing and applying the skills and techniques of quality improvement
Understand that quality improvement is a critical and life-long part of education and practice; participate in maintaining professional standards in myself and my colleagues
Engage patients, families, and caregivers in the process of improvement
6. Commitment to valuing a culture of diversity
As a physician, I will strive to foster a community of practitioners that reflects the diversity of the communities they serve. I will strive to:
Promote diversity within the profession to be receptive and responsive to the evolving (physical, emotional, cultural, socioeconomic) needs of our patient populations
Foster a training and practice environment where diverse and unique perspectives, across generations, cultures and abilities, are heard and appreciated
Foster diversity in leadership across the full spectrum of leadership roles within the profession and health systems
Value the importance of these perspectives within the medical profession, even when they may not be my own patients, families, and caregivers in the process of improvement
The Canadian Medical Association is pleased to present its views to the study on poverty reduction strategies by the House of Commons Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities.
The focus of the Committee’s study on improving the delivery of federal resources and services for the Canadian Poverty Reduction Strategy is of profound interest to the CMA, given our concerns about the need to address the social determinants of health. It is that perspective from which this paper will approach the Committee’s areas of interest.
Social Determinants of Health
The consequences of poverty on health are well established and include lower life expectancy, higher disease burden, and poorer overall health. Research suggests that 15% of population health is determined by biology and genetics, 10% by physical environments, 25% by the actions of the health care system, with 50% being determined by our social and economic environment.1 Many studies show that people low on the socioeconomic scale are likely to carry a higher burden of just about any disease.2
1 Keon, WJ, Pépin L. (2008) Population Health Policy: Issues and Options. Ottawa: The Senate of Canada; 2008. Available at: https://sencanada.ca/content/sen/Committee/392/soci/rep/rep10apr08-e.pdf
2 Op cit. Dunn JR. The Health Determinants Partnership Making Connections Project
3 Munro D. Healthy People, Healthy Performance, Healthy Profits: The Case for Business Action on the SocioEconomic Determinants of Health. The Conference Board of Canada, Ottawa (ON); 2008.
Reducing inequities and thereby improving population health should be an overall objective for all governments in Canada.
The societal cost of poor health extends beyond the cost to the health care system: healthier people lose fewer days of work and contribute to overall economic productivity.3 Those living in the most disadvantaged neighbourhoods experience almost 20 years less disability-free life.
It is fundamental that the health impact of social and economic decisions be part of the policy development and decision-making process.
1. The CMA recommends that health impact assessments be included as part of the policy development and decision-making process in poverty reduction strategies, including in the development of legislation and regulations.
Neighbourhoods and Housing
Mounting evidence suggests that the built environment can play a significant role in our state of health. The literature indicates that the following connections between the built environment and public health are possible:
o Decreased physical activity;
o Increased prevalence of obesity;
o Increased prevalence of asthma and other respiratory diseases;
o Injuries and unintended fatalities;
o Heat exposure.4
4 Frank , L., Kavage S, & Devlin A. (2012). Health and the Built Environment: A Review. World Medical Association
5 Canadian Society of Exercise Physiology. (2011). Canadian Physical Activity Guidelines. Canadian Society of Exercise Physiology
6 CMA. Active Transportation http://policybase.cma.ca/dbtw-wpd/Policypdf/PD09-04.pdf 2009
7 Statistics Canada. (2006, June 28). Childhood Obesity: A Troubling Situation. Retrieved July 15, 2012, from StatsCan: http://www41.statcan.ca/2006/2966/ceb2966_004-eng.htm
Canada's physical activity guidelines recommend that children ages 5 to 11 should be active for at least 60 minutes a day; those 18 and over should be active for at least 150 minutes per week.5 However, physical activity includes more than exercise and leisure time activity, it also includes active transportation such as walking to school, work or errands as part of daily living. CMA’s policy on Active Transportation recommends that all sectors (physicians and other health professionals, government, business and the public) work together, as a matter of priority, to support and encourage active transportation and physical activity.6 Urban planners must work together with health professionals to understand the impact on health.
Research shows that specific populations, such as children, the elderly, and low-income populations, are more affected.
Children: Obesity is an issue for Canadians nationwide, but particularly so for children. Between 1978 and 2004 there was a 70% increase in overweight and obese children aged 12-17.7 Obesity in children can lead to health issues such as hypertension, glucose intolerance, and orthopaedic complications.8 Furthermore it has a high likelihood of carrying over into adulthood and may result in further health problems such as diabetes and heart disease.9 Environments that promote physical activity are
especially important, including mixed use communities with walkable destinations, parks and recreational facilities.10
10 Dannenberg, A., Frumkin, H., & Jackson, R. J. (2011). Making Healthy Places Designing and Building for Health, Well-Being and Sustainability. Island Press.
11 Vogel, T., Brechat, P., Lepetre, P., Kaltenbach, G., Berthel, M., & Lonsdorfer, J. (2009). Health Benefits of Physical Activity in Older Patients: A Review. The International Journal of Clinical Practice, 63(2), 303-320.
12 Centre for Chronic Disease Prevention and Control. . (2002). Diabetes in Canada, 2nd Edition. Ottawa: Health Canada
13 Statistics Canada. (1996-97, May 29). National Population Health Survey, Cycle 2. Canada: The Daily.
14 Creatore, M., Gozdyra, P., Booth, G., & Glazier, R. (2007). Chapter 1: Setting the Context. In M. Creatore, P. Gozdyra, G. Booth, R. Glazier, & M. Tynan, Neighbourhood Environments and Resources for Healthy Living - A Focus on Diabetes in Toronto: ICES Atlas. Toronto: Institute for Clinical Evaluative Sciences.
15 Op cit Dunn JR. The Health Determinants Partnership Making Connections Project
16 Raphael D. Addressing The Social Determinants of Health In Canada: Bridging The Gap Between Research Findings and Public Policy. Policy Options. March 2003 pp.35-40.
Elderly: The elderly population is generally less physically robust and more prone to chronic illnesses, which make them especially vulnerable to air pollution and heat exposure. Physical activity is an important aspect of daily life for this age group as it has been shown to reduce the negative health impacts of aging.11 Being physically active, however, requires accessible and safe streets, and transportation systems that cater to the needs of individuals with mobility issues. Special consideration is required when constructing the built environment to ensure the needs of this growing population.
Low Income Populations: Low income populations are at higher risk for chronic illnesses such as high blood pressure and diabetes, and have a lower overall survivability for major heart attacks.12,13 They are also more likely to smoke, be overweight or obese, and are less likely to be physically active.14 Many of these factors can be linked to limited access to stable housing, housing location (normally close to highways or industrial zones with high pollution exposure), neighbourhood safety, and lack of access to or affordability of healthy food options.
2. The CMA recommends that the federal government work with all sectors to create a culture within communities that supports and encourages active transportation and physical activity.
Hundreds of research papers have confirmed that people in the lowest socio-economic groups carry the greatest burden of illness.15 Studies also suggest that adverse socio-economic conditions in childhood can be a greater predictor of cardiovascular disease and diabetes in adults than later life circumstances and behavioural choices.16 Finally,
the countries reporting the highest population health status are those with the greatest income equality, not the greatest wealth.17
17 Hofrichter R ed. Tackling Health Inequities Through Public Health Practice: A Handbook for Action. The National Association of County and City Health Officials & The Ingham County Health Department. Lansing (USA); 2006.
18 Bierman AS, Angus J, Ahmad F, et al. Ontario Women’s Health Equity Report : Access to Health Care Services : Chapter 7. Toronto (ON) Project for and Ontario Women’s Health Evidence-Based Report; 2010.
19 Bierman AS, Johns A, Hyndman B, et al. Ontario Women’s Health Equity Report: Social Determinants of Health & Populations at Risk: Chapter 12. Toronto (ON) Project for and Ontario Women’s Health EvidenceBased Report; 2010.; Williamson DL, Stewart MJ, Hayward K. Low-income Canadians’ experiences with health-related services: Implications for health care reform. Health Policy 2006; 76:106-121.
20 Canadian Institute for Health Information. Hospitalization Disparities by Socio-Economic Status for Males and Females. Ottawa(ON); 2010. Available: https://secure.cihi.ca/free_products/disparities_in_hospitalization_by_sex2010_e.pdf (accessed 2017 Jan 5)
21 Canadian Institute for Health Information. Hospitalization Disparities by Socio-Economic Status…;Roos LL, Walld R, Uhanova J, et al. Physician Visits, Hospitalizations, and Socioeconomic Status: Ambulatory Care Sensitive Conditions in a Canadian Setting. HSR 2005; 40(4): 1167-1185.
22 Canadian Medical Association. Policy resolution GC15-70 - Basic income guarantee. Approved August 26, 2015
Income plays a role in access to appropriate health care as well. Individuals living in lower income neighbourhoods, are less likely to have primary care physicians18, and are more likely to report unmet health care needs.19 They are more likely to be hospitalized for conditions which could potentially be avoided with appropriate primary care.20,21
In 2015, the CMA passed a resolution endorsing the concept of a basic income guarantee”22, which is a cash transfer from government to citizens not tied to labour market participation. It ensures sufficient income to meet basic needs and live with dignity, regardless of employment status. A basic income guarantee has the potential to alleviate or even eliminate poverty. It has the potential to reduce the substantial, long-term social consequences of poverty, including higher crime rates and fewer students achieving success in the educational system.
In addition, resources and supports are needed to assist low-income Canadians regarding diet, shelter, skills development and other needs..
3. The CMA urges the Government of Canada to prioritize consideration of a basic income guarantee as a policy option for reducing poverty.
Prenatal and Early Childhood
Research suggests that 90% of a child’s brain capacity is developed by age five.23 High quality early childhood programs including programs to nurture and stimulate children and educate parents are highly correlated with the amelioration of the effects of disadvantage on cognitive, emotional and physical development among children.24,25
23 Arkin E, Braveman P, Egerter S & Williams D. Time to Act: Investing in the Health of Our Children and Communities: Recommendations From the Robert Wood Johnson Foundation Commission to Build a Healthier America. Robert Wood Johnson Foundation. Princeton (NJ); 2014.
24 Braveman P, Egerter D & Williams DR. The Social Determinants of Health: Coming of Age. Annu Rev Publ Health. 32:3.1-3.18. 2011.
25 European Union. Commission Recommendation of 20.2.2013: Investing in children: breaking the cycle of disadvantage. Brussels (Belgium); 2013.
26 Canadian Medical Association, Canadian Paediatric Society, College of Family Physicians of Canada. Child and Youth Health: Our Challenge: Canada’s Child and Youth Health Charter. Ottawa October 9, 2007.
In 2007, the Canadian Medical Association, the Canadian Paediatric Society and the College of Family Physicians of Canada released Canada’s Child and Youth Health Charter.26 To reach their potential, children and youth need to grow up in a place where they can thrive — spiritually, emotionally, mentally, physically and intellectually — and get high-quality health care when they need it. That place must have three fundamental elements: a safe and secure environment; good health and development; and a full range of health resources available to all. Children and youth of distinct populations in Canada, including First Nations, Inuit and Métis, must be offered equal opportunities as other Canadian children and youth through culturally appropriate resources.
Our children and youth must have a safe and secure environment where they can access clean water, air and soil; be protected from injury, exploitation and discrimination; and live in healthy family, homes and communities. Further, to ensure good health and development there must be access to prenatal and maternal care for the best possible health at birth and access to quality nutrition for proper growth, development and long-term health.
As well, early learning opportunities and high-quality care, at home and in the community must be accessible. Opportunities and encouragement for physical activity are crucial as well as access to high-quality primary and secondary education. Finally, affordable and available post-secondary education and a commitment to social well-being and mental health are paramount.
4. The CMA recommends that the federal government and the provinces and territories work to ensure that poverty does not continue to be a barrier to the healthy development of Canadian children, particularly in their first five years.
Socio-economic factors play a larger role in creating (or damaging) health than either biological factors or the health care system. Health equity is increasingly recognized as a necessary means by which we will make gains in the health status of all Canadians. Despite a commitment to equal access to health care for all Canadians there are differences in access and quality of care for many groups. For those that are most vulnerable, this lack of access can serve to further exacerbate their already increased burden of illness and disease. Action is still required by the federal government to tackle the underlying social and economic factors which lead to the disparities in the health of Canadians.
The Canadian Medical Association (CMA) is pleased to submit this brief to the Senate Standing Committee on Social Affairs, Science and Technology in support of Bill S-228, An Act to Amend the Food and Drugs Act (prohibiting food and beverage marketing directed at children). The CMA has over 85,000 physician-members; our mission is empowering and caring for patients and its vision is a vibrant profession and a healthy population.
The CMA is encouraged that the Senate is considering legislation that will protect children by prohibiting marketing of food and beverages directed to those under 13 years of age. We applaud Senator Nancy Greene Raine for sponsoring this important bill.
Obesity rates among children and youth in Canada have nearly tripled in the last 30 years. Obesity is of particular concern to Canada’s physicians because it increases a person’s risk of developing a number of serious health problems: high blood pressure, high blood cholesterol, heart disease and stroke, type 2 diabetes, osteoarthritis, lower back pain and other musculoskeletal disorders, and many types of cancer. Type 2 diabetes, once found only in adults, is now being seen in children.
Health advocates are concerned that because of obesity, today’s generation of children will have a shorter life expectancy than their parents. Children and youth who are obese are at higher risk of developing a range of health problems, and weight issues in childhood are likely to persist into adulthood. Diet-related chronic disease risk stems from long-term dietary patterns which start in childhood. Canadian statistics reveal children, consume too much fat, sodium and sugars (foods that cause chronic disease) and eat too little fiber, fruits and vegetables (foods that prevent chronic disease). The current generation of Canadian children is expected to live shorter less healthy lives as a result of unhealthy eating.1
CMA’s Cautions against Marketing
Children and youth in Canada are exposed to a barrage of marketing and promotion of unhealthy foods and beverages through a variety of channels and techniques – tactics which undermine and contradict government, health care professional and scientific recommendations for healthy eating. Research undertaken for the Heart and Stroke Foundation found that kids see over 25 million food and beverage ads a year on their favourite websites and that over 90% of the food and beverage product ads viewed online are unhealthy.2
Unhealthy food and beverage advertising influences children’s food preferences, purchase requests, and consumption patterns and has been identified as a probable cause of childhood overweight and obesity by the World Health Organization.3
The CMA has long been calling on governments to explore ways to restrict the advertising and promotion of high-calorie, nutrient-poor foods. In 2006 CMA recommended that media advertising of high-calorie, nutrient-poor "junk" food in children's television programs be banned altogether. As the ways and means of advertising have expanded so too has our thinking, and in 2012 CMA adopted a policy on Restricting Marketing of Unhealthy Foods and Beverages to Children and Youth in Canada which called for the restriction of all marketing to children under 13 years of age of unhealthy foods and beverages. In 2014, CMA endorsed the Ottawa Principles and the Stop Marketing to Kids Coalition. The Ottawa Principles went further to help refine the definitions, scope and principles meant to guide marketing to kids (M2K) policy-making in Canada.4 They recommend the restriction of commercial marketing of all food and beverages to children and youth age 16 years and younger. Restrictions would include all forms of marketing with the exception of non-commercial marketing for public education.
At present, Canada relies on voluntary industry codes to govern advertising and marketing practices. However, recent Canadian research into industry self-regulation has shown no reduction in children’s exposure to ads for unhealthy foods.5 The CMA believes that for maximum efficacy, regulatory measures are required to minimize the negative effect of food marketing on health. Only legally enforceable regulations have sufficient authority and power to ensure high-level protection of children from marketing and its persuasive influence over food preference and consumption.
Not only health organizations are in favour of restrictions on the marketing to children. Recent public opinion polling from Heart and Stroke’s 2017 Report on the Health of Canadians highlights that 72% believe the food and beverage industry markets its products directly to children, 78% believe the food and beverages advertised to children are unhealthy and 70% feel that children are exposed to too much advertising by the food and beverage industry.
In her introduction of Bill S-228, Senator Raine noted that this is not the first time that that legislation on this issue has come before the Canadian Parliament. The CMA sincerely believes that now is the time for action. We cannot delay any longer. Canadian children and parents need an environment free from the influence of food and beverage marketing in which to make health nutritious food choices.
Childhood obesity and overweight are serious health problems in Canada, and as such are of great concern to the country’s physicians and to the Canadian Medical Association. The causes, CMA believes, are rooted mainly in changes in our environment and their effect on our eating and physical activity habits. The consequences are extremely serious, both for individual Canadians’ health and for the sustainability of Canada’s health care system.
CMA believes that the way forward requires a number of different interventions, on many levels. The prohibition of the marketing of foods and beverages directed to children is one element of a wider healthy eating strategy that supports Canadians.
Once again, CMA commends the Senate of Canada on conducting this study. We urge support of the Child Health Protection Act and believe that it can assist in creating a social environment that supports healthy eating and healthy weight.
1 Canadian Medical Association, Restricting Marketing Of Unhealthy Foods And Beverages To Children And Youth In Canada, A Canadian Health Care And Scientific Organization Consensus Policy Statement, December 2012
2 Heart & Stroke (2017). The kids are not alright. How the food and beverage industry is marketing our children and youth to death. 2017 Report on the Health of Canadians.
3 World Health Organization. Set of recommendations on the marketing of foods and non-alcoholic beverages to children. Geneva: World Health Organization, 2010.
4 The Ottawa Principles, Stop Marketing to Kids Coalition, accessed at https://foodsecurecanada.org/sites/foodsecurecanada.org/files/ottawaprinciples.pdf, June 7, 2017.
5 Heart & Stroke (2017). The kids are not alright. How the food and beverage industry is marketing our children and youth to death. 2017 Report on the Health of Canadians.
While genetic testing is typically provided in a clinical setting through the referral of a health care professional (HCP) or a regulated research project, a number of private companies now offer genetic testing services directly to consumers over the Internet. Direct-to-consumer (DTC) genetic testing is distinguished from clinical genetic testing ordered by a HCP in several ways:
1. DTC genetic tests are not regulated in Canada. The clinical validity and reliability of these tests varies widely, but DTC genetic testing companies make them available to consumers without distinguishing between those that may be useful to the management of one's health, those that have some limited health value, and those that are meant purely for recreational use.
2. Many of the tests advertised and sold via the Internet have not undergone clinical evaluation.
3. Marketing materials for these tests often imply that they have health value, but the terms of reference of some of the companies that offer them state that the tests are to be used for recreational purposes and many vendors do not guarantee the validity or reliability of their results.
4. Resale of personal health information and/or DNA samples is often an important part of the business model of companies that offer DTC genetic testing, raising concerns about patient privacy and insufficient or unclear disclosure of privacy terms.
5. Unlike genetic tests ordered and administered by HCPs, DTC genetic tests are ordered directly by the consumer, who most often has not consulted with a HCP as part of a clinical assessment, and the testing may not be clinically indicated. Some companies only agree to do testing if it has been ordered by a physician, but they will provide a phone conversation with one of their physicians (not based in Canada) if a consumer does not have access to a physician. When the testing is ordered by a physician, it will sometimes be ordered by the patient's personal physician. In such cases, this does not truly represent DTC genetic testing.
6. Without appropriate pre- and post-testing counselling by a HCP, consumers are left to interpret and act upon their results on their own. They might suffer psychological consequences if they overestimate their disease risk as a result of DTC.
7. As access to DTC genetic testing increases, Canadian HCPs (specifically primary care physicians) are faced with the challenge of appropriately counselling patients when they receive their test results. However, few physicians feel they have the necessary
training and knowledge in genomics to provide adequate care in this area. Furthermore, these tests may have no clinical indication, produce uncertain results with ambiguous clinical applicability and have tenuous legal status, but they can potentially influence a patient's sense of well-being.
1. The CMA is concerned with understanding, raising awareness of, and mitigating potential patient and societal harms that may arise from DTC genetic testing.
2. The CMA emphasizes the importance of the principle of protection of patient privacy and supports the right of Canadians to understand how their health information is being used by third parties, including insurance and DTC genetic testing companies.
3. The CMA believes that patients have the right to be fully informed about what a DTC genetic test can and cannot say about their health and that the scientific evidence on which a test is based should be clearly stated and easy to understand.
4. The CMA recommends regulation of both DTC genetic tests and the marketing of these tests through the development of a national framework that would include a combination of government and industry regulation with input from medical experts.
5. The CMA believes that unnecessary genetic testing should be avoided to ensure more appropriate use of health care resources. Even if a consumer pays directly for testing, any test result, even an incidental finding from a DTC genetic testing laboratory without clinical certification, may trigger a cascade of clinical investigations and lead to further unnecessary testing and inappropriate use of resources.
6. The CMA supports educational initiatives on DTC genetic testing for physicians practising in all specialties so that they can respond to patient queries about these tests and, when necessary, their results.
PROTECTION OF PRIVACY
* Privacy and confidentiality of patients' personal health information must be maintained.
* Before a patient submits a sample to a DTC genetic testing company, the company should obtain express informed consent from the patient concerning the way in which their data will be collected and used, who will have access to the data and the interpreted results, what safeguards are in place to protect it, and how it will be disposed of in the event of a company/laboratory closure.
* Patients have the right to a clear understanding of who owns the sample and the generated data, in particular whether their data will be sold or shared with third parties. If resale of personal health information and/or DNA samples is an important part of the business model of DTC-GC companies, this should be stated explicitly in terms understandable by the consumer.
* DTC-GC companies that solicit Canadian consumers should be subject to the Personal Information Protection and Electronic Documents Act (PIPEDA).
* The CMA encourages physicians to become familiar with privacy legislation affecting the use of DTC genetic tests by insurance companies and employers.
ROLE OF PHYSICIAN
* Physicians should generally avoid using DTC genetic tests unless they have been clinically and empirically validated.
* Physicians who are presented with a patient's DTC genetic test results should take the following actions:
o They should explain to their patient the limits of the specific test the patient used. If a physician does not know this information he/she should discuss with the patient the fact that DTC genetic test results are not necessarily obtained from an accredited laboratory or interpreted in a standardized way; therefore, the validity and clinical utility of the results may be highly variable for certain tests.
o They should disclose their level of comfort in providing an accurate interpretation of the results.
o They should assess whether the test results are clinically significant in the context of that patient's symptoms, signs, medical history and family history before deciding whether it is appropriate to formally consult a specialty provider such as a medical geneticist.
o If a physician wishes to use the results of a test in their clinical assessment, they should ensure that the laboratory performing the test guarantees analytical reliability and validity.
* Physicians should adhere to the following principles related to medically indicated genetic testing:
o Physicians should generally avoid recommending and/or ordering DTC genetic tests if they do not have a clear understanding of the validity and limitations of the tests they select.
o Physicians should follow best practice guidelines and make use of clinically valid tests, accredited laboratories and specialist referral(s), when appropriate.
o Physicians must obtain informed consent from the patient before ordering any genetic test, assist the patient in interpreting the results, support the individual with respect to psychological and biological implications of the results, and refer the patient to appropriate resources.
o Many genetic tests require pre- and post-test counselling, particularly (but not limited to) tests involving children, tests establishing carrier status or tests considered to be predictive. If a provider decides to order such testing, they also accept the responsibility for facilitating access to pre- and post-test counselling.
ROLE OF GOVERNMENT
* The CMA calls on the government to enact regulations based on Bill S-201 (An Act to prohibit and prevent genetic discrimination) that establish clear boundaries for the marketing, distribution, accreditation and third-party use of DTC genetic tests.
* The CMA believes that it is the government's responsibility to ensure that Canadians are only offered reliable, accurate and medically relevant genetic testing services.
* The CMA encourages the development of national standards for the reliability and validity of DTC genetic tests by relevant federal government agencies, in conjunction with interested stakeholders (e.g., geneticists and laboratory scientists, genetic counsellors, physicians, private and public laboratories, industry, and patient groups).
* The CMA encourages the government to enact standards that can keep pace with the rapid development of technological innovation in genetic testing and genetics more generally.
* The CMA encourages the government to enact standards that hold companies accountable for being transparent about their uses of data/DNA and the potential resale of such material.
* The CMA encourages the government to enact standards that mandate that the type of testing (e.g., single-nucleotide polymorphism [SNP] analysis, targeted mutation testing, sequencing) be clearly labelled and that a clear explanation be provided of the type of information that can (or cannot) be obtained from such testing.
* Genetic testing and the interpretation of the results of such testing are highly technical and complex processes. For this reason, the CMA believes that clinical testing laboratories that are used by DTC genetic testing companies must be accredited if the companies are to claim that their testing is valid.
* The CMA believes that scientific evidence describing the validity and utility of a DTC genetic test should be clearly stated in language that is easy to understand. This information should include a clear statement of what a test can or cannot diagnose or infer, and statements about the validity of a specific test should be supported with references. A company that does not guarantee the reliability or validity of its test should not be allowed to make any (implicit or explicit) claims about the potential medical utility of its test and/or its potential to improve health.
EDUCATION AND PUBLIC ENGAGEMENT
* The CMA supports public education initiatives to increase patient awareness of the potential implications and limitations of DTC genetic testing for health purposes.
The CMA supports increased genetics training for physicians to help them to further appreciate the complex issues involved and keep pace with the rapid changes in molecular genetics. Such training would support physicians to counsel patients who seek follow-up for their DTC genetic test results.
Approved by the CMA Board of Directors May 2017
See also Background to CMA Policy on Direct-to-Consumer Genetic Testing
BACKGROUND TO CMA POLICY
DIRECT-TO-CONSUMER GENETIC TESTING
See also CMA Policy PD17-05 Direct-to-Consumer Genetic Testing
Some direct-to-consumer (DTC) genetic tests, such as "compatibility testing" for online dating, are purely recreational. Other tests, however, are marketed both as being for recreational use and as producing results that are useful to the management of one's health. This document concerns this second category of tests. The characteristics of these tests differ widely, and some of the companies that offer them clearly state that they do not guarantee the validity and reliability of their tests. As of January 2016, 246 companies offered some form of DNA test online.1 Many DTC genetic tests have started to penetrate the Canadian market, especially after the U.S. Food and Drug Administration issued a warning letter instructing some companies in the U.S. to cease providing unreliable health information that could potentially lead consumers to make misinformed decisions about their health, which caused some of these companies to seek out alternative markets.2
The increasing availability of DTC genetic tests in Canada presents several challenges, as the predictive value of most of the DTC genetic tests currently on the market is very low. Moreover, there is no standard model for the delivery and interpretation of the results of these tests. Greater regulatory guidance and protection is needed to ensure that individuals who choose to submit samples to DTC genetic testing companies are not adversely affected by information that is not necessarily predictive or even accurate.
Survey research indicates that the general public is overwhelmingly interested in genetic testing technologies.3 Researchers predict that an increasing number of individuals will use DTC genetic testing as testing technologies continue to become more affordable and efficient.3 Since genetic issues tend to cross medical specialties, it often falls on primary care physicians to understand the role of genetics in clinical care.4 In fact, genetic testing companies often direct patients to discuss their results with their primary care physician.5 Patients not only seek out their primary care providers to discuss their genetic test results and obtain appropriate follow-up but also expect them to be able to answer questions about personal genome test results.6 Despite these expectations, health professionals' awareness and knowledge of DTC genetic tests remains low.7
Although DTC genetic tests are marketed under similar names, the genetic tests available in Canada have very different characteristics. Three types of tests are offered: (1) single-nucleotide polymorphism (SNPs) analysis, which assesses an individual's risk for common multifactorial diseases (e.g., diabetes, myocardial infarction), (2) targeted mutation analysis and (3) sequencing. Some are ordered directly by the consumer while others are pre-ordered by the consumer and the order is co-signed by a physician (the patient's physician or a physician who has never met the patient and whose services are provided by the company). SNP testing assesses for a number of genetic variants that are common in the general population and that have been identified in association studies to modify (increase or decrease) the risk of a given disease.
Some DTC genetic testing companies explicitly state in their terms of service that they do not guarantee the accuracy or reliability of the test. This is due in part to deficiencies in the science underlying the tests and their interpretation. For example, the interpretation of SNPs analysis for common multifactorial diseases can only be as good as the science behind it. The scientific community has a long way to go before it will have identified all of the significant genetic risk factors and protective factors for these diseases. Because of this, a given consumer could receive greatly divergent risk interpretations.3 In the case of targeted mutation analysis and sequencing, the specific panels offered by DTC genetic testing companies may not include all of the clinically relevant genes and mutations. This could result in a consumer receiving harmful false reassurance. Test results may include information on genetic changes that are only weakly associated with disease, leading to undue anxiety. As such, the clinical and health value of DTC genetic testing continues to be debated despite consumer uptake of, and enthusiasm for, DTC genetic testing offered online.
Currently, most DTC genetic testing services exist in regulatory limbo, benefiting from laws that tend to lag behind technological innovation. Questions about access to the information yielded by these tests have emerged as a particular concern. For some companies, an important part of the business model is to sell consumers' DNA along with the clinical information that the consumers provide via their interactive websites. Most Canadians are unaware of this: they pay for a test and do not expect that their data will later be sold.
ISSUES ARISING IN CLINICAL CONTEXTS
Studies have shown that physicians see a number of benefits with DTC genetic testing, but they also have concerns. The benefits physicians have identified include convenience, promotion of preventive medicine and the provision of personalized services.5 They are concerned about the reliability of test results, the provision of adequate information/counselling, patient anxiety if the results are misunderstood, inappropriateness of advertising, discrimination with respect to employment and insurance, the possible spread of beliefs such as genetic determinism, and the inappropriate disclosure of patients' genetic information.5
The following sections will address primary concerns identified by research and in practice.
1. Patient privacy
Privacy is one of the top concerns of the general public about genetic testing.8 According to a 2010 report commissioned by the Office of the Privacy Commissioner of Canada, approximately 60% of patients indicated that privacy and discrimination fears would influence their decision to undergo genetic testing.9 The average Canadian consumer is not adequately informed that an important part of the business model of many DTC genetic testing companies is to build and sell their database of phenotypic information and DNA accumulated from their clients to third parties, such as biobanks or pharmaceutical companies.
1.1 Informed consent
The increasing quantity, complexity and diversity of DTC genetic testing services pose challenges for informed consent because both specific and generic models do not meet ethical standards when applied to this type of service.10 Many companies bind their consumers to contracts that are activated once the website is viewed, a practice that challenges the adequacy of consent, as it is common for people to view a website without reading or even seeing its terms of reference.1 Consumers who present to genetic clinics tend not to question the validity of the results they have received from DTC genetic testing,11 which can be interpreted as an indication that consumers give their consent without reading or understanding the disclaimers made by the companies.11 Physicians are concerned that this lack of informed consent could compromise the confidentiality of personal health information, encourage requests for unnecessary medical tests and potentially cause distress to patients.
The insurance industry is of particular concern in the context of privacy and DTC genetic tests. A study of patients' perceptions of DTC genetic tests found that participants were concerned that genetic results could affect their health insurance premiums or lead to denial of coverage.12 Private insurance is fundamentally rooted in the practice of discriminating between clients on the basis of risk. While insurers have generally been entitled to request genetic information in the form of family history, to access medical files and to conduct medical tests,13 consumers have expressed the view that the rules governing access to genetic information should be stricter than for access to other forms of personal information.3
While there are studies that report cases of genetic discrimination, it is often unclear whether such treatment is perceived or actual.14. Thus, the consequences of genetic testing remain uncertain. Of particular concern is the potential for discrimination on the basis of results that may not be accurate and/or reliable. Although there is presently no evidence of widespread use of genetic testing by insurance companies,14experts agree that in the next 10 years public acceptance of the use of information from genetic testing will increase and it will become possible to more accurately interpret data from genetic tests (K. Boycott, J. Davies and K. Morin, CIHR Café Scientifique, unpublished remarks), threatening to alter the currently limited role that genetic testing plays in insurance company decision-making. Before policy-makers tackle the potential issues related to the use of DTC genetic testing, it is imperative that they start at ground level and explore options to regulate insurance companies' access to such tests.
2. Patient response
2.1 Interpretation of results and changes in behaviour
Proponents of DTC genetic testing point to the potential for patients to make positive changes to their health as a result of learning about their genetic susceptibility to certain diseases. Findings of studies in this area, however, are inconsistent to date. While some studies have reported that there are some behaviour changes, it is important to keep in mind that early adopters of these services are likely to also be among those most motivated to make health-related changes.15 Recent evidence suggests the opposite response: the general population has a tendency to decrease healthy practices upon learning about a lower health risk, and they do not increase healthy practices when they learn that they have an increased health risk.15 Indeed, patients may make poorer health decisions if they are under the impression that they are not at risk for developing a certain disease; for example, they may avoid routine screening for breast or prostate cancer, or they may not follow exercise and diet advice. 16
These variations in behaviour can be largely attributed to the fact that there is an overarching risk that patients will misinterpret the data they receive from the testing companies. The problem with susceptibility tests in the context of DTC genetic testing is not only that the test results may cause psychological or physical harm but also that there is a possibility that patients will over-interpret their disease risk.10 Without expert guidance, the patient may not be able to evaluate their test results accurately enough to make informed health decisions.14 There is very little evidence to suggest that receipt of a DTC genetic test result produces sustained behavioural change.17 In fact, studies on psychological theories related to motivation do not consider disease risk information a useful tool for motivating patients to change their behaviour.15 Therefore, while receipt of DTC genetic test results may encourage patients to see their family physician and possibly undergo further consultation, the health care resources invested in interpreting results with limited clinical validity may not produce sustained behavioural changes, good or bad.
3. Resource allocation
One of the stated goals of personalized medicine is to save health care systems money by facilitating the use of fewer but more effective treatments.18 However, greater demand for genetic testing, whether public or private, could produce the opposite effect: consumption of health care resources may increase as patients consult with their regular physician about results they obtained through a DTC company.16 Furthermore, physicians who are presented with DTC genetic test results by their patients have a legal and ethical obligation to do their due diligence and carry out a complete, clinically valid investigation, which may ultimately negate the cost savings that personalized medicine is expected to produce.16
Patients who participate in DTC genetic testing are likely to drive up the utilization of health care providers, as they seek out their primary care provider to discuss their results and they obtain follow-up care from a genetic counsellor.19,5 At least one study has suggested that there is an expectation that physicians will help patients to interpret their DTC genetic test results, and DTC genetic testing companies frequently direct patients to discuss their results with their physicians before acting upon their testing information.5 Consequently, the responsibility falls on primary care providers to discuss this technology with their patients.5
Primary care providers, however, believe that genetic specialists are the most appropriate providers of counselling for DTC genetic tests.14 While they acknowledge the benefits of DTC genetic tests, including the potential for test results to encourage patients to be more involved in their care and take responsibility for their health, they also agree that test results may encourage patients to seek unnecessary and potentially expensive follow-up tests.14 As a result, additional health care resources may be required to cope with the increased demand for medical follow-up.20
4. Physician education
Although DTC genetic testing companies have been around since the early 2000s, levels of awareness among health care professionals vary, and knowledge and understanding of the services generally remain low.21 Research suggests that few physicians feel they have the necessary training and knowledge in genomics to provide adequate care in this area.17 A perceived lack of clinical utility appears to be a barrier to learning more about DTC genetic testing.6 Increased genetics training and awareness may allow physicians to better appreciate the complex issues involved and help them to better counsel patients who seek follow-up for their DTC genetic test results.
4.1 Topics that physicians want to learn about
Most physicians are concerned about the privacy implications of DTC genetic testing, specifically health insurance and employment discrimination, which may affect their patients who present with a DTC genetic test.5 Therefore, important discussion points to include in a physician education program would be information on the risks of insurance and employment discrimination, legislation currently in place to protect against genetic discrimination, and guidelines for managing risk.6 Given the ease with which patients can access DTC genetic testing, it is essential to provide health professionals with appropriate education on the potential benefits and risks of DTC genetic testing and help them develop an approach to interpreting the results of such testing, so that they can protect their patients from harm and arrange follow-up appropriately.19
5. Legislative landscape in Canada
Before May 2017, Canada did not have a law to specifically protect against genetic discrimination. Existing human rights and privacy law could only be ambiguously and tenuously applied to DTC genetic testing issues, including genetic discrimination and information collection, use and disclosure.14 The laws that regulate medical devices, such as the Food and Drugs Act, did not clearly apply in the context of DTC genetic tests either,2 because consumers are not purchasing genetic testing kits but rather they are purchasing testing services, which fall outside the scope of that legislation.22 As a result, there was limited evidence to form the regulations necessary to ensure the validity and utility of these tests.
Fortunately, on May 4, 2017, Bill S-201 (hereinafter termed S-201), An Act to prohibit and prevent genetic discrimination,23 received Royal Assent and will soon become law. S-201 provides a basis for the creation of regulations concerning the validity and utility of DTC genetic tests. The bill prohibits the requirement that an individual submit to genetic testing or disclose the results of genetic tests in order to receive goods or services or in order to enter into or continue a contract or agreement, and it prohibits submission to genetic testing or disclosure of test results from being used as the basis of any specific conditions in a contract or agreement. S-201 amends the Canada Labour Code to protect employees from being required to undergo or disclose the results of genetic testing and amends the Canadian Human Rights Act to prohibit discrimination on the grounds of genetic characteristics.21 Legislation at a provincial level, however, may still be required. Private Member's Bill 127, An Act to amend the Human Rights Code with respect to genetic characteristics,24 was presented to the Legislative Assembly of the Province of Ontario in 2013 but did not move past the first reading.
Federal and provincial privacy legislation (such as the federal Personal Information Protection and Electronic Documents Act, or PIPEDA) also plays a role in protecting against genetic discrimination by requiring an individual to consent to the collection, use or disclosure of personal information.25 Currently, the Office of the Privacy Commissioner of Canada does not support amending the Privacy Act or PIPEDA, on the grounds that these laws sufficiently apply to genetic information.23 While this legislative framework might provide some protection against genetic discrimination, there is a lack of clarity as to whether it strikes the appropriate balance between consumers' rights to privacy and the interests of insurers. Furthermore, the courts have yet to provide an opinion regarding the constitutionality of S-201 or to assist in the interpretation of privacy legislation in the context of DTC testing, because of the novelty of the service.
It is uncertain if and how Bill S-201 will inform future regulations placed upon employers and insurers. Significant gaps in the legislative framework remain; in particular, privacy protection in Canada has yet to counterbalance the lack of consumer protection in Canadian insurance laws.22 While existing legislation may offer some protection, the absence of legal precedents creates uncertainty and leaves consumers to engage in DTC testing services at their own risk.
See also CMA Policy PD17-05 Direct-to-Consumer Genetic Testing
1 Phillips AM. Only a click away - DTC genetics for ancestry, health, love ... and more: a view of the business and regulatory landscape. Appl Transl Genom 2016;8:16-22.
2 US Food and Drug Administration. Warning letter. Silver Spring (MD): The Administration; 22 Nov 2013. Available: www.fda.gov/iceci/enforcementactions/warningletters/2013/ucm376296.htm (accessed 2017 May 19).
3 Caulfield T. Direct-to-consumer testing: if consumers are not anxious, why are policy makers? Hum Genet 2011;130:23-5.
4 Delaney SK, Christman MF. Direct-to-consumer genetic testing: perspectives on its value in healthcare. Clin Pharmacol Ther 2016; 99(2):146-8.
5 Powell KP, Cogswell WA, Christianson CA, et al. Primary care physicians' awareness, experience and opinions of direct-to-consumer genetic testing. J Genet Couns 2012;21(1):113-26.
6 Powell KP, Christianson CA, Cogswell WA, et al. Educational needs of primary care physicians regarding direct-to-consumer genetic testing. J Genet Couns 2012;21(3):469-78.
7 Jackson L, Goldsmith L, Skirton H. Guidance for patients considering direct-to-consumer genetic testing and health professionals involved in their care: development of a practical decision tool. Fam Pract 2014;31(3): 341-8.
8 Caulfield T, McGuire AL. Direct-to-consumer genetic testing: perception, problems, and policy responses. Annu Rev Med 2012; 63:23-33.
9 Office of the Privacy Commissioner of Canada. Analysis of privacy policies and practices of direct-to-consumer genetic testing companies: private sector databanks and privacy protection norms. Ottawa: The Office; March 2010. p. 6.
10 Bunnik EM, Janssens AC, Schermer MH. Informed consent in direct-to-consumer personal genome testing: the outline of a model between specific and generic consent. Bioethics 2014;28(7):343-51.
11 Brett GR, Metcalfe SA, Amor DJ, et al. An exploration of genetic health professionals' experience with direct-to-consumer genetic testing in their clinical practice. Eur J Hum Genet 2012;20(8):825-30.
12 Wasson K, Sanders TN, Hogan NS, Cherny S, Helzlsouer KJ. Primary care patients' views and decisions about, experience of and reactions to direct-to-consumer genetic testing: a longitudinal study. J Community Genet. 2013;4:495-505
13 Lemmens T, Pullman D, Rodal R. Revisiting genetic discrimination issues in 2010: policy options for Canada [PowerPoint presentation]. Ottawa: Genome Canada; 15 June 2010. Available: www.genomecanada.ca/sites/default/files/pdf/en/gps_speakers_presentation/trudo-lemmens-daryl-pullman.pdf
14 Zinatelli F. Industry Code: Genetic testing information for insurance underwriting [Internet]. Toronto, ON: CLHIA; 2017 Jan 11. Available from https://www.clhia.ca/domino/html/clhia/CLHIA_LP4W_LND_Webstation.nsf/page/E79687482615DFA485257D5D00682400/$file/Industry%20Code%20Genetic%20Testing%20-%20Updated.pdf
15 Adams SD, Evans JP, Aylsworth AS. Direct-to-consumer genomic testing offers little clinical utility but appears to cause minimal harm. N C Med J 2013;74(6): 494-8.
16 Ram S, Russell B, Gubb M, et al. General practitioner attitudes to direct-to-consumer genetic testing in New Zealand. N Z Med J 2012;125(1364):14-26.
17 Caulfield T. Obesity genes, personalized medicine and public health policy. Curr Obes Rep 2015;4(3):319-23.
18 Caulfield T, Zarzeczny A. Defining 'medical necessity' in an age of personalised medicine: a view from Canada. Bioessays 2014;36(9):813-7.
19 Bloss CS, Schork NJ, Topol EJ. Direct-to-consumer pharmacogenomic testing is associated with increased physician utilisation. J Med Genet 2014;51(2):83-9.
20 Daly AK. Direct-to-consumer pharmacogenomic testing assessed in a US-based study. J R Coll Physicans Edinb 2014;44:212-3.
21 Jackson L, Goldsmith L, Skirton H. Guidance for patients considering direct-to-consumer genetic testing and health professionals involved in their care: development of a practical decision tool. Fam Pract 2014;31(3):341-8.
22 Mykitiuk R. Caveat emptor: direct-to-consumer supply and advertising of genetic testing. Clin Invest Med 2004;27(1):23-32.
23Parliament of Canada. Legislative summary of Bill S-201: An Act to prohibit and prevent genetic discrimination. Ottawa: Parliament of Canada; 2016
24 Parliament of Canada. Bill 127: An Act to amend the Human Rights Code with respect to genetic characteristics, 2nd Sess, 40th Leg, Ontario, 2013.
25 Personal Information Protection and Electronic Document Act (PIPEDA), S.C. 2000, C.5, para 5(3).
The Canadian Medical Association urges provincial and territorial governments to support the Federal Genetic Non-Discrimination Act (Bill S-201) by enacting corresponding legislation that echoes privacy protection.
The Canadian Medical Association urges provincial and territorial governments to support the Federal Genetic Non-Discrimination Act (Bill S-201) by enacting corresponding legislation that echoes privacy protection.
The Canadian Medical Association urges provincial and territorial governments to support the Federal Genetic Non-Discrimination Act (Bill S-201) by enacting corresponding legislation that echoes privacy protection.