Ontario is committed to equality in access to quality care in the last stages of life, regardless of factors such as age, sexual orientation and identity, socioeconomic status, culture, ethnicity and place of residence.
The type of care required to address the needs of any one individual or group differs. Nevertheless, laws, policies and programs should be sufficiently flexible to address diverse experiences in a manner that is consistent with rights and principles established under the Constitution and Human Rights Code, among other legal frameworks.
This chapter reviews the experiences of communities that face particular barriers accessing care in the last stages of life. It begins with an overview of the issue and a reminder about relevant legal frameworks (see also chapter 3.C). Then, it provides select examples of communities with unmet needs in Ontario.
B. Difficulties Achieving Equality in Access to Care in Ontario
Recent government reviews of palliative care confirm that Ontarians suffer marked disparities in accessing quality care in the last stages of life. For instance, the Declaration of Partnership (Ontario’s vision for palliative care), the Auditor General report on palliative care, and the Fraser Report identify inequalities based on a variety of factors.
The Auditor General’s report highlights that, in many ways, Ontario’s difficulties achieving equality arise from the lack of a systemic approach to identifying persons who might be eligible for palliative care and the unequal distribution of services across regional LHINs. By way of example, the Auditor General found, “Because eligibility for and supply of palliative care services varies, patients who qualify for services in one area of the province may not have access to similar services in another area”.
The LCO is aware that the OPCN will be addressing systemic barriers relating to Ontario’s decentralized institutional framework and the standardization of eligibility criteria, which may go a long way in bridging disparities in access. Furthermore, as recommended by the Auditor General, the Ontario government is developing a province-wide strategy.
However, a range of other complex factors contributes to inequality in access. These factors overlap with issues surrounding basic eligibility and coordination, but they reflect the diversity in experiences that must also be accounted for within any standardized approach.
There is a dynamic relationship – sometimes tension – between standardized approaches and ensuring a level of customization that meets the unique needs of individuals, families and communities. For example, palliative care recognizes a set of core principles for treatment and accompaniments as well as the necessity of person- and family-centred approaches in each specific case (see section 4.C.1). Consistent with “personalization” in palliative care, the LCO also believes that care in the last stages of life must respond to Ontario’s diverse communities.
The Fraser Report raises awareness about the place of diversity in achieving equality in access. It relates information that stakeholders told the government and which mirrors what the LCO learned in our own consultations. According to Fraser,
If we were to take only one idea away from our province-wide consultations about palliative care, it would be that not all Ontarians have the same access. The barriers are many and diverse. They range from system fragmentation to geography to challenges providing culturally sensitive care.
Fraser describes various communities affected by disparities in access, and he conveys a message that the LCO also heard repeatedly: Ontario should seek to respond to diverse communities with unmet needs. In his words,
Participants told us, time and again, about the importance of ensuring that all patients have access to culturally appropriate and safe palliative and end-of-life care, including those from urban, rural and remote communities, and including various cultural faith and linguistic groups, vulnerable populations (e.g., people who are homeless, have mental health or addiction issues), people with disabilities and Indigenous communities.
We also heard that the approach to palliative care should be tailored to each unique community.
Not unlike the Fraser Report and Auditor General’s report, the Declaration of Partnership acknowledges there are groups that are underrepresented or marginalized in the current system. Furthermore, in that document, partners including the Government of Ontario, LHINs and community organizations, positively committed to “[p]rovide more equitable access across all population groups”.
These and other documents attest to Ontario’s recognition of and commitment to achieving equality in palliative care, and the LCO believes that any future strategy should further such existing commitments. Additionally, from the LCO’s perspective, equality should go beyond access to palliative care to include medical assistance in dying (as defined by law) and, also, certain social and legal benefits that could achieve just outcomes for the many communities affected by death and dying. For instance, ensuring caregivers receive support when providing informal services to persons who are dying would fit within our broad understanding of equality for persons affected by this area of the law and, generally, our definition of access to justice.
The following table lists communities that have been identified as having unmet needs in documents including the Fraser Report, Declaration of Partnership and Auditor General’s report. It should be apparent from this table that, collectively, these communities represent a significant proportion of Ontarians.
To illustrate the need for customized care, we give examples of difficulties that at least some communities encounter later in the chapter.
Figure 5: Ontario’s Communities with Unmet Needs
|· Caregivers, and other family and friends||· First Nations, Inuit and Métis peoples|
|· Older adults with serious frailties||· Faith and culturally diverse communities|
|· Persons living in long-term care||· Newcomers to Canada|
|· Persons living in retirement homes
· Francophone persons
|· Persons living in correctional facilities
· Persons living with HIV/AIDS
|· Person for whom English is not a principal language||· Persons with mental health issues and addiction|
|· Persons experiencing homelessness||· Persons living in rural and remote areas|
|· Persons with disabilities||· LGBTQ persons|
|· Children and infants||· Persons with low income|
C. Legal Frameworks Relevant to Communities with Unmet Needs
Chapter 3 of this discussion paper reviewed foundational laws applicable to care in the last stages of life, including the Constitution, Canada Health Act, Excellent Care for All Act, and Human Rights Code. Each of these laws speaks to issues of equality in access to care in the last stages of life for persons who are dying and their supporters.
We previously explored equality rights under s.15 of the Charter, which requires that public funded services be provided without discrimination based on grounds including age, sexual orientation, ethnic origin, religion or disability. Section 15 of the Charter may require that governments take steps to accommodate individuals and groups that suffer discrimination up to the point of undue hardship. However, claims to services that are not already within the basket of publicly funded health care may not necessarily be successful, since medicare coverage under the Canada Health Act and OHIP is intended to be a partial plan.
A Note on “Equality” and “Equity”
|In the legal field, we use the term “equality” to describe rights to services without discrimination.
This term recognizes that discrimination may be intentional or an effect of global measures. Therefore, equality does not always mean the “same” services for everyone, because standardized services may effectively discriminate against those who have unique needs.
Equality recognizes that positive steps to address discrimination may be required to achieve dignity and participation for all.
The concept of “equity” in the health care sector is aligned with the LCO’s understanding of “equality”.[i]
As mentioned previously in chapter 3, the Ontario Human Rights Code provides similar equality protections to s.15 of the Charter, but while the Charter applies to government, the Code also applies to the private sector, and it covers health services and facilities.
Policies and other guidance documents drafted at the Ontario Human Rights Commission (OHRC) elucidate how equality should be interpreted under the Code. The OHRC has disseminated policies on grounds that may be relevant to how care ought to be provided to Ontario’s diverse communities in the last stages of life. Their policies address
- creed and religious observances,
- gender identity and expression,
- sexual orientation,
- mental health disabilities and addiction,
- racism and racial discrimination,
- age (for older adults), and
Some OHRC guidance documents refer directly to accommodations in the health care sector. For example, in the OHRC policy on creed, the Code is interpreted as requiring “inclusive design”, which “means being aware of differences that characterize people from Code protected groups when making design choices to avoid creating barriers”. In that policy, the OHRC provides the example of creating a “multi-faith prayer/reflection room for persons of diverse faiths to observe their creed beliefs and practices” in a health facility.
Thus, the duty to accommodate as a matter of equality relates not only to the removal of overtly discriminatory barriers, such as obstructive infrastructure for persons with physical disabilities. Rather, it is intended to promote the full participation, dignity and citizenship of all Ontarians, and to foster their diversity. The OHRC explains,
The goal of accommodation is to help everyone have equal opportunities, access and benefits… The duty to accommodate stems, in part, from a recognition that the “normal ways of doing things” in organizations and society are often not “neutral” but rather may inadvertently disadvantage, privilege or better meet the needs of some groups relative to others. Instead of giving special privileges or advantages, accommodations help to “level the playing field” by ensuring that all Ontarians are equally included and accommodated.
“The Ontario Human Rights Code is meant to foster a society which will allow diversity to flourish…”
Accommodations under the Charter and Code do, nevertheless, have their limitations. We mentioned the limitation on claims that allege new programs should be funded to improve the condition of specific groups that go beyond discrimination within the medicare basket of services. Another limitation is the requirement that individuals or groups belong to recognized “grounds” for equality. These grounds are listed in the Charter and Code, and analogous grounds may be recognized by courts. We listed examples above (e.g., race, disability, age).
To the extent that some of Ontario’s communities with unmet needs in the last stages of life may hold rights associated with these grounds, the Charter and Code could provide a persuasive rationale for improving access to quality care. The LCO’s role as a law reform agency does not involve assessing the relative merits of any particular community’s equality claims. Nonetheless, we do often recommend systemic changes to existing law and policy frameworks that we believe could potentially advance equality.
For those communities that do not hold rights under a recognized ground or who might not be eligible for services because they exceed the law’s definition of non-discrimination, there are other rights and principles that may be instructive. These rights and principles sometimes overlap with a flexible understanding of equality, and they form part of the LCO’s definition of access to justice.
By way of example, s.7 of the Charter protects individuals from criminal sanction against medical practices that deprive them of rights to life, liberty and security of the person. Section 7 cases have expressly supported rights for persons with terminal illness and chronic disease. These include rights to make decisions about medications that alleviate the effects of illness and rights to security from interference with one’s physical and psychological integrity. In Carter, the Supreme Court affirmed that concerns about autonomy and quality of life can be treated as liberty and security rights.
In sum, legal rights and principles that are relevant to communities with unmet needs in the context of death and dying include the following:
- The right to equality (Charter, s. 15)
- The right to life, liberty and security of the person (Charter, s. 7)
- The right to freedom of conscience and religion (Charter, s.2)
- Indigenous and treaty rights (Constitution Act, 1982, 35)
- Universality in the terms and conditions to access insured health services under provincial plans (Canada Health Act, ss.7(a), 10)
- Accessibility of insured health services that is reasonable, free of financial or other barriers, and free of discrimination (Canada Health Act, ss.7(e), 12)
- High quality health care that is accessible, appropriate, effective, efficient, equitable, integrated, patient centred, population health focused, and safe (Excellent Care for All Act, 2010, Preamble).
Similar to our approach to equality rights, the LCO’s project does not evaluate claims to services based on the above rights and principles. However, we do believe Ontarians should have equitable access to care, and that it might be inconsistent with existing rights and principles if only some communities have access to crucial public services nearing the end of life. Therefore, along with the LCO’s own Framework Principles (see chapter 1.B), established rights and principles inform our approach to law reform, and we take them into account in this project.
In next section, we mention rights and principles when they relate to our examples of communities facing challenges with this area of the law. For the most part, however, we simply describe the experiences that stakeholders told us about, recognizing that certain communities might benefit from tailored laws, policies or programs.
D. Examples of Communities with Unmet Needs
It should be clear from our review so far that Ontario is home to many distinctive communities that might benefit from a tailored approach to care. The reasons are complex, involving our Constitutional history, demographic trends, persisting discrimination and interrelated factors. At a high level, we consider the following factors as contributing to the importance of addressing particular needs in a nuanced, responsive manner:
- Dying, death and bereavement affect everyone
- Ontario is a province with a rich tradition of diversity
- Faith, cultural and other values, beliefs and practices have a strong bearing on how we define quality care
- Communities interact differently with the health care system, and sometimes their needs are underrepresented in standardized approaches.
Given the extensive variation in affected individuals and communities, we can provide only a few examples of communities with unmet needs.
Some were chosen as examples due to deficits in research and awareness. For example, we are mindful of the OPCN’s plans to improve palliative care across Ontario’s geographic regions, and we have not presented them here. We have also funded external papers on LGBTQ persons, and older adults with serious frailties and their caregivers. These are found on our website at www.lco-cdo.org. Furthermore, we address faith and cultural issues in a separate chapter because they permeate the experiences of nearly all communities (ch. VI.G).
For a list of these and other communities identified as having unmet needs in Ontario, please see the table on page 73. We also invite you to tell us about any other communities that the LCO should be considering during our consultations for the project.
Finally, the LCO acknowledges that the discussions below provide only partial information on the challenges that communities face. This chapter is by no means exhaustive; it is intended to provide helpful illustrations that we can build upon as the project proceeds.
1. Caregivers, and other family and friends
During the LCO’s background consultations, we heard that caregivers who support persons nearing the end of life, and other family and friends, desire improved services during the course of illness and after a person has died.
Caregivers play in indispensable role in Ontario’s health care system. They provide wide ranging assistance across care settings and substantially supplement publicly funded services. Studies show many caregivers perceive their role in a positive light, as a reciprocal process that benefits them and the persons they support. However, there is also reliable evidence demonstrating that negative health, social and financial repercussions of caregiving are common.
The Change Foundation’s 2016 report, A Profile of Family Caregivers in Ontario documents the many impacts of caregiving. For instance, it shows that juggling caregiving and work can have a destabilizing effect on employment. Many caregivers report feelings of worry, anxiety, fatigue, depression, loneliness and being overwhelmed. Almost 1 in 10 caregivers also report financial hardship resulting from their responsibilities including borrowing money, using savings and selling their assets.
Presently, caregivers living in Ontario may possibly be eligible for four forms of support:
- Protected leave from work in designated circumstances
- Financial support from federal Employment Insurance (EI)
- Respite care delivered through the provincial health system
- Income tax credits.
The Employment Standards Act, 2000 protects employees from losing their job when they take leaves of absence to care for family members, persons “like a family member” or in emergencies. The provisions governing leave are quite complex because there are several types and each may depend on factors, including relationship, prognosis and length of employment.
Leave is also limited by a maximum number of weeks within a period of time. For example, under one type of leave called “Family Medical Leave”, employees are entitled to take up to 8 weeks to care for an individual who has a significant risk of death within a period of 26 weeks. If the person does not pass away within that 26 week period, employees are entitled to another leave of up to 8 weeks, but only in a subsequent 26 week period.
A consequence of existing requirements is that caregivers may exhaust their entitlements or may not be able to take leave without interruptions. Interruptions can be especially pronounced where the underlying condition causes ups and downs over a lengthy period of time. Continuity in leave for the actual time it takes to care for persons who are ill can therefore be difficult. Furthermore, while Ontario’s protections were recently expanded, they do not match protections for federally regulated employees. Under the Canada Labour Code, a type of protection similar to Family Medical Leave entitles employees to an additional 20 weeks.
For employees who are able to take leave, the Employment Standards Act, 2000 does not guarantee pay. Ontarians may be eligible for federal EI benefits, including the “Compassionate Care Benefit”. Since EI is aligned with federal leave entitlements, these benefits may be available for 26 weeks. That said, the LCO has heard that because they are linked to job-status, caregivers may not be eligible if, for instance, they have not accumulated sufficient work hours, are self-employed or are precarious employed. Furthermore, benefits are only available to caregivers of persons with a significant risk of death or critically ill children – they neglect to include other chronic conditions.
Short-term respite provided through the health system and income tax credits are other sources of caregiver support. On the whole, however, stakeholders told the LCO that existing caregiver benefits in Ontario are inadequate. The Fraser Report documents similar sentiments with respect to current levels of home care (which could offset the need for caregiving), respite services and financial compensation.
The LCO is aware that community organizations in Ontario are advocating for a caregiver allowance, separate from employment regimes. In Canada, Nova Scotia provides such a benefit in the amount of $400 per month. The UK and Australia also provide a spectrum of financial allowances for caregivers as well as statutory protections for “flexible” working arrangements.
In addition, the UK and Australia have legislation that specifically defines “carer”, and centralized gateways for informational supports (i.e., online portals and call-centres). One of the challenges for caregivers identified in the LCO’s consultations is Ontario’s lack of such formal recognition of caregivers as a unique beneficiary group, which could improve the coordination of dedicated services and supports.
Grief and bereavement services
Aside from direct supports for caregiving activities, persons who are caregivers, and other family and friends, have expressed the need for improved grief and bereavement services.
The Declaration of Partnership accepts that grief and bereavement care are a core part of the vision for palliative care in Ontario. Access to grief and bereavement supports are listed among the document’s priorities for action and it calls upon the LHINs and regional palliative care networks to ensure that appropriate support is available before and after a person dies.
Generally speaking, in Ontario counselling and psychological care are not covered by public health insurance, unless they are provided by psychiatrists (because they are medical doctors) or offered through government-funded hospitals, clinics and programs. There are many passionate and committed organizations that coordinate volunteering programs to help family and friends work through their experiences, and these often receive some public funding.
However, stakeholders informed the LCO that communities require better capacity to provide the supports they strive to offer. As it is now, services are fragmented and psychological support has not been adequately integrated into palliative care. We were informed that, as a result, Ontario effectively has a “two-tiered” system for therapy, divided between those who can pay for private services and those who cannot.
We also heard the ESA provides insufficient leave to face the challenges arising after a person dies, such as arranging a funeral and managing grief. For instance, under Family Medical Leave, employees cannot remain on leave after the last day of the week in which the person dies.
The Fraser Report strengthens many of the LCO’s own findings. While he highlights innovative programs in the province, Fraser also remarks,
According to participants, families would benefit from stronger supports for anticipatory grief, loss and bereavement, including information, ongoing support groups and counselling services at all stages of care.
2. Persons living in long-term care homes
Challenges in the delivery and receiving of palliative care in long-term care homes was a pervasive theme repeated by numerous concerned individuals throughout the LCO’s consultations.
Long-term care homes are internationally recognized as an important setting for palliative care. While the vast majority of residents are older persons, they are also home to persons with disabilities and persons with serious health conditions that require constant access to care. As the Ontario Long Term Care Association explains,
Nearly all (97.4%) of people in long-term care have two or more chronic conditions that have seriously compromised their health. More than six in 10 (62%) have Alzheimer’s disease or another dementia that has progressed to the point where they can no longer live at home or in a retirement home. Most residents are seniors, with more than half over the age of 85.
Long-stay residents will almost always spend their final days there, and about one third of residents die each year.
It is a fundamental principle of Ontario’s long-term care system that these are homes. The Long-term Care Homes Act, 2007 (LTCHA) emphasizes that these settings must be operated in a way that respects the dignity, security, safety and comfort of their residents, and must meet not only their physical, but also their psychological, social, spiritual and cultural needs. Ontario’s statutory framework includes a number of provisions aimed at providing holistic supports and services to persons at this stage of life:
- For each resident, there must be a written plan of care, based on an assessment of the resident and her or his needs and preferences, and addressing all aspects including medical, nursing, personal support, social, restorative, religious and spiritual care;
- Every long-term care home must have a program addressing religious and spiritual practices;
- Homes must apply interdisciplinary approaches.
As mentioned before, the Long-Term Care Homes Act, 2007 requires licensees to train all staff who provide direct care to residents on palliative care. Licensees also have a statutory duty under the Regulations to “ensure that every resident receives end-of-life care when required in a manner that meets their needs”.
Nevertheless, several stakeholders have indicated that persons residing in long-term care could benefit from an approach to care that more fully draws on and includes palliative care models.
The literature and our background consultations show that consistent, quality palliative care is not available in many long-term care homes. We heard that, despite improvements, residents’ pain and symptoms are often left untreated, transfers to hospital at the end-of-life are still too frequent, and death and dying are “hidden” rather than discussed as a normal stage in life. These concerns point to regulatory and implementation barriers in the province that, it appears, research and policy are only beginning to address.
For example, one concern raised during our consultations relates to the identification criteria for palliative care. Stakeholders informed the LCO that there is a conceptual and practical divide between care for elderly persons who are “aging into death” with serious frailties, including comorbidity and dementia, and care for those who have been diagnosed with terminal or other life-limiting illnesses. Although there are prognostic tools available to assess frailty for clinical purposes, frailty has yet to be fully incorporated into eligibility for palliative care.
Other concerns relate to the lack of precision in regulatory requirements for palliative care and implementation issues. Long-term care homes are required to ensure that legislated staffing and care standards are met, and to create written staffing plan that provides for a staffing mix that is consistent with residents’ assessed care and safety needs. However, research indicates that most homes in Ontario do not have formal palliative care strategies or programs, and staff does not receive adequate education (especially personal support workers (PSWs) who provide most front-line care). Instead, the focus of care is on daily maintenance. The LCO was informed that existing staffing levels, and performance and reporting requirements also do not account for residents’ needs nearing the end of life.
The LCO heard that, above all, such challenges result from the need for a “culture shift”. This shift would move the health care system as a whole to greater recognition of the value and importance of the long-term care system. It would also re-orient the long-term care sector itself around the recognition that residents are increasingly older, frail and vulnerable persons with very complex medical needs, who could benefit from both higher levels and different forms of care, including palliative care.
These and other difficulties addressing the needs of long-term care home residents at the end of life can be summarized as follows:
- Imprecise guidance on how regulatory requirements for palliative care should be implemented in long-term care homes’ policies, procedures and accountability.
- Lack of recognition of seriously frail individuals, including the elderly, within identification criteria for the palliative approach to care.
- As in the broader health system, attitudinal barriers to acknowledging the prevalence of death and dying.
- Insufficient staff levels and appropriate education to support care at the end of life.
- Lack of integration across long term care and health sectors.
- The need for an overall “cultural shift” based on the actual demographics of long-term care home residents.
3. Persons living in retirement homes
Retirement homes are a privately funded care setting; however, residents have varying means and are not necessarily affluent. At the same time, demand for retirement homes is increasing in part because of the lack of available space in Ontario’s long-term care sector, and due to increasingly stringent admission criteria. Yet retirement homes are not subject to the same level of scrutiny as long-term care homes and their residents do include vulnerable persons. As the Advocacy Centre for the Elderly (ACE) explains,
Residents of retirement homes are a potentially vulnerable group as they are often dependent on the institution that provides their care and shelter, in addition to the fact that they are ‘out of sight’ and sheltered from public scrutiny.
The LCO has heard distressing accounts of the lack of higher level care and, specifically, palliative care in this setting. Under the Retirement Homes Act, 2010 (RHA), retirement homes need only make two care services available to residents, directly or indirectly. Care services are defined under the Act to encompass a wide range of services from assistance with dressing to the provision of meals. Therefore, unlike long-term care homes, retirement facilities can but are not required to provide palliative and end-of-life care.
Aside from any limitations on facilities themselves providing care, the LCO received further feedback from stakeholders that there are significant barriers to receiving external services in retirement homes. For instance, we heard that service providers arranged through the CCACs and palliative care providers have been refused access to residents’ apartments. Retirement homes are also known to have evicted residents when they needed palliative care. This situation has arisen while residents are living in their units and also upon their admission to hospital following a health event. Retirement homes have prohibited residents from returning home when they are discharged from hospital.
The RHA established the Retirement Homes Regulatory Authority, which oversees standards, licensing, inspections, investigations and enforcement. Beyond this targeted legislation, retirement homes are also governed under the Residential Tenancies Act, 2006 (RTA) because they are private tenancies. Together, this statutory regime creates rights of occupancy that are not always evident in residents’ lived experience.
Both statutes explicitly entitle residents to apply for and receive external care services of their choosing in their homes. For example, the RHA reads as follows:
External care providers
- a licensee of a retirement home shall not prevent a resident of the home from applying for care services from an external provider of the resident’s choosing
- … a licensee of a retirement home shall not interfere with the provision of care services to a resident of the home by an external care provider.
The Bill of Rights under the same Act and the RTA contain similarly clear guarantees.
However, retirement homes are permitted to apply to the Landlord and Tenant Board to evict tenants requiring “a level of care that the landlord is not able to provide”. It should be noted that it is the Landlord and Tenant Board who is mandated to make the determination of whether an eviction order is appropriate; it is not at the landlord’s discretion.
Moreover, the Landlord and Tenant Board may only issue an eviction order where it is satisfied that two criteria have been met:
- Care services provided by the retirement home along with external services provided in the home (such as publicly funded home and community care) must be insufficient to meet the resident’s needs
- Appropriate alternative accommodations must be available.
Residents may thus have avenues of recourse open to them, including making an application to the Landlord and Tenant Board if they are being unlawfully evicted as well as submitting a complaint to the Retirement Homes Regulatory Authority.
But, in practice, retirement homes do evict residents or pressure them to leave without applying to the Landlord and Tenant Board. We mentioned above that they have also prohibited residents from accessing external services to which they are entitled (in general and prior to any eviction order).
There are several resources available for residents and others seeking public legal education and advice, such as the Advocacy Centre for the Elderly and Community Legal Education Ontario (CLEO). Nonetheless, the LCO would like to know more about how compliance under the RHA and RTA could be improved, residents’ rights better enforced and whether any legislative reform would be beneficial.
4. First Nations, Inuit and Métis peoples
Health care for Indigenous peoples in Canada is in dire need of reform. Indigenous peoples are affected by shorter life expectancy, higher rates of chronic conditions and distressing health crises. Yet, they lack access to culturally appropriate, self-determined and safe services.
The Truth and Reconciliation Commission’s (TRC) Calls to Action lists a number of areas for collaboration between Indigenous, federal, provincial and territorial governments to improve health care in these circumstances. It calls upon them to
….acknowledge that Aboriginal health in Canada is a direct result of previous Canadian government policies, including residential schools, and to recognize and implement the health-care rights of Aboriginal people as identified in international law, constitutional law, and under the Treaties.
Over the past year, both the federal and provincial governments have pledged to invest new funding into health for Indigenous communities. Ontario launched the First Nations Health Action Plan to ensure “access to more culturally appropriate care and improved outcomes”.
The action plan focuses on a number of critical priorities, including primary care, public health and health promotion, senior’s care, and life promotion and crisis support. Initiatives that receive increased funding in these areas could, possibly, devote some funds to palliative care. However, the action plan does not explicitly mention palliative care. The government has promised to implement and review the action plan in partnership with Indigenous partners.
There are extensive barriers to quality care nearing the end of life for First Nations, Inuit and Métis persons in Ontario that must be overcome. In Ontario, Indigenous peoples receive a mix of services delivered through complex arrangements involving federal and provincial funding and services, and First Nations governments. The palliative care that any one individual receives is highly dependent on factors such as status under the Indian Act, place of residence within or outside a First Nations jurisdiction, and the geographical location and resources of distinctive First Nation communities.
Given the Ontario government’s commitments to palliative care and, also, Indigenous health, the LCO believes it is an opportune time to improve palliative care in a way that addresses disadvantages for Indigenous communities, including inequalities among those communities. To that end, below we describe existing challenges that should be considered.
Needless to say, the LCO cannot speak for Indigenous peoples. In the confines of this discussion paper, we can only describe a handful of barriers that have been already been reported.
These are examples of challenges that we would like to learn more about:
- Divisions between federal and provincial governments create a “gap” in health care: The federal government regulates and funds health care for First Nations peoples living on reserve. At the same time, Ontario must deliver insured services to everyone residing in the province. Ambiguities arising from this division of power have given rise to “gaps” in care for persons living on reserve. Recently, the Canadian Human Rights Tribunal recognized a robust interpretation of “Jordan’s Principle”, which requires the first agency that is contacted to pay for services for children living on-reserve and to determine jurisdictional issues later. Nevertheless, jurisdictional conflicts affect the availability of palliative care, as special type of service, which we review below.
- Palliative care is inadequate in for Indigenous peoples in Ontario: Federal funding on reserve covers “essential health services”, which include home and community care but not dedicated long-term or palliative care. Individuals living on reserve are eligible for provincial home and community care services as well. However, provincially funded services on reserve vary and are often not available, especially in remote communities. Indigenous peoples located or living off-reserve can generally access the same services as others in the province. In these circumstances there may be cultural, language and other social barriers to access (see below). Moreover, if individuals have to leave their homes on-reserve to receive care for the last stages of life, it can have detrimental effects for them, their family and community. The MOHLTC does fund Aboriginal Health Access Centres (AHAC), which provide some palliative care on and off-reserve. But overall, Indigenous peoples’ access to palliative care is wanting.
- There are inequalities among persons living on and off-reserve, and across First Nations communities: Inequalities in services between persons living on and off-reserve can be gleaned from the two challenges presented above. These distinctions also affect First Nations, Métis and Inuit individuals differently, since only First Nations receive federally funded services on reserve in Ontario. Although a recent Supreme Court case affirms that the federal government holds obligations toward Métis and Inuit peoples under the Indian Act and fiduciary duties, these obligations do not extend to the provision of health care. Additionally, the LCO has heard there are great differences in the demographics, resources and capacities of various First Nations communities across Ontario, depending on complicated factors (e.g., proximity to urban areas).
- Self-determination is an important part of health care: Health care is planned and delivered in partnership with Indigenous governments and agencies. Each reserve has a different arrangement for health care administration. For example, some communities deliver health care through funding agreements between the federal government and Band Council, while others do so in partnership with regional Treaty organizations (e.g., Nishnawbe Aski Nation) or First Nations Health Authorities. The provincial AHACs are community-led and they seek to promote self-determination: 60% of their professionals are Indigenous individuals and they also employ traditional healers (for a total of 360 employees in 10 centres). Even so, the LCO heard that tensions arise in existing governance arrangements, and there is a desire for enhanced self-determination in Indigenous health care.
- Cultural appropriateness is related to “safety” in health care: Cultural appropriateness is a goal for all care nearing the end of life. Cultural awareness and the ability to provide competent care for Indigenous peoples is sometimes referred to as “cultural safety”. Framing this issue as a matter of safety captures the relationship between mainstream services and Indigenous experiences of colonization, discrimination and oppression, which have continuing, traumatic repercussions on multiple generations. There are certainly efforts in Ontario to build cultural safety into care nearing the end of life. However, there is no standardized guidance on cultural safety, and Indigenous beliefs, practices and languages have not been well integrated or reinforced. For the LCO, claims to culturally appropriate health care as a Treaty right and, also, legal disputes about rights to traditional healing under the Constitution shed light on the urgency of articulating the scope of cultural safety. We examine cultural issues, including Indigenous cultural issues, comprehensively in chapter 6 of this paper.
As mentioned above, the TRC’s Calls to Action makes recommendations to improve Indigenous health care. Recommendations include recognizing Indigenous healing practices, increasing the number of Indigenous professionals working in health care, and providing compulsory education on Indigenous history, rights, Treaties and practices, among others.
During our consultations, the LCO learned there are many promising palliative care initiatives and pilots in Ontario that affirm Indigenous community mobilization and empowerment, such as the Improving the End-of-Life Care in First Nations Communities project conducted with four First Nations communities.
In addition to Indigenous persons’ lived experiences, would like to know more about how these community-based programs and sources, such as the TRC report, might feed into ongoing work.
5. Persons experiencing homelessness
Homelessness affects diverse individuals who are living in extremely vulnerable circumstances – from persons affected by family violence staying in shelters and immigrants in temporary accommodations to “unsheltered” persons living on the streets. Although definitions of homelessness do vary in scope, the Canadian Observatory on Homelessness defines the term inclusively to describe
individuals or family without stable, permanent, appropriate housing, or the immediate prospect, means and ability of acquiring it.
There is a true continuum of situations covered by this term since “homelessness does not discriminate on the basis of age, gender, sexuality or race”. There are, however, groups that disproportionately experience homelessness, including some of persons we mentioned above:
- Persons seeking protection from abuse
- New immigrants
- Persons with mental health issues and cognitive disabilities
- Persons with addiction
- Individuals relocating from institutional care (e.g., group homes, child protection, mental health facilities, correctional facilities).
Persons living with a low income have less access to health services and worse health outcomes, and these consequences are particularly evident among homeless persons. Homeless persons may have overlapping conditions and, frequently, struggle with mental health issues. Yet there are fewer resources available to address their intersecting physical, psychological and social conditions, and the community has a higher morbidity rate than the general population. It is estimated that “[a]t the age of 25, men living in shelters, rooming houses and hotels are expected to live, on average, until 42.3 years”.
When it comes to palliative care, however, stakeholders told the LCO that standard services are not conducive to reaching Ontarians experiencing homelessness and providing them with quality care.
There are certainly barriers unique to different individuals and groups within this community; however, there are also shared challenges. For example, most persons experiencing homelessness do not have a health card. The lack of fixed address makes standard documents a challenge and, in turn, impedes the ability to access the health system as a whole. There are also hospices that refuse to care for individuals without a permanent address or primary care provider – two things that homeless individuals might not have. Even basic emergency services and hospital care may be beyond reach.
Persons experiencing homelessness also tend to have priorities that compete with their health needs. Immediate necessities of life, such as food and shelter, often take precedence over health care, which can lead to delays in seeking help or a lack of continuity in care. Individuals may, for instance, be unable to make or keep appointments due to the transient nature of living arrangements. Some individuals may also have difficulty obtaining prescription medications and adhering to medical advice.
Moreover, the LCO heard that homeless persons suffer considerable prejudice, which affects not only the quality of care they receive, but also has a chilling effect on their willingness to seek out help. We were told that health care providers often have trouble understanding or do not support the lifestyle choices of some persons, which exacerbates the lack of contact with the health system.
Other specific difficulties arising in this area include restrictive policies around drug use in care settings for persons with addiction and, also, reliance on housing staff or social workers due to isolation from family and friends. But these are just a few of the impediments for this particular community.
The Declaration of Partnership recognizes that homeless persons are marginalized and require a better government response. The Fraser Report also mentions homelessness and it cautions health care providers to “be flexible when delivering care to: patients who are homeless who may lack proper identification, health card or places for providers to visit…”. However, in Ontario, there has been little effort made to bridge the gaps that affect this particular community. Initiatives to address their needs tend to be discrete and independent projects.
These initiatives include “street nurses” as well as two projects that have garnered remarkably positive attention and merit at least a brief mention: the Palliative Education and Care for the Homeless (PEACH) program in Toronto, and the Mission Hospice Program in Ottawa.
PEACH is a community outreach program that brings palliative care to persons in various situations of homelessness through a mobile-shelter approach. It consists of 60 physicians as well as nurses who travel to shelters and drop-in sites to provide capacity building support to staff and direct care. The program helps persons who may have had little to no regular contact with doctors for years. It delivers early palliative care to persons no matter their stage of illness.
The Mission Hospice Program provides shelter-based palliative care to residents of the Ottawa Mission. The program uses a harm reduction approach for managing the particular needs of residents with addiction who are receiving palliative care. It seeks to reduce drug-related harm without requiring that persons with addiction stop their drug use. However, the program also has strict rules in place regarding injections at the shelter, and ensuring that medications are kept safe and administered solely by program staff.
In our upcoming consultations, the LCO would like to learn more about the possibilities for leveraging initiatives, such as PEACH and the Mission Hospice Program, as well as for systemic change.
6. Persons with disabilities
The community of persons with disabilities has a strong tradition of advocacy for rights to full citizenship and participation in society. The community has successfully gained recognition of various accommodations and has eliminated certain inequalities arising from societal discrimination under the Charter, Code, AODA and Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act. Yet persons with disabilities continue to advocate for the eradication of inequalities that persist in multiple areas, including care in the last stages of life.
All individuals who are nearing the end of life are in a position of vulnerability. But this vulnerability is heighted for persons with disabilities. Some elderly persons may develop physical and cognitive disability later in life and for those who experience disability prior to the onset of older age, their functional health could further decline in their later years.
The heightened vulnerability of persons with disability who are nearing death is attributable to social factors including prejudice, marginalization, social isolation and substantial experiences of abuse and neglect. Vulnerabilities are especially felt by persons with diminished cognitive capacity, who may not know their options, or face challenges communicating their needs and concerns. Unfortunately, discrimination and vulnerability serve as a barrier to quality care because they limit the ability to gain services and, sometimes, to self-advocate.
Lack of accessibility is another major barrier for persons with disabilities that affects admissions to palliative care. For instance, health providers may have difficulties identifying when persons with disabilities are nearing the end of life. Because persons with disabilities may have understudied or unpredictable illness trajectories, it can be hard to determine when a person might transition to different types of care or settings.
There are also known obstacles to the quality of care provided to persons with disabilities who actually receive services. Persons with disabilities can have complex care needs which limit the breadth of options available to them. An individual who uses a wheelchair, for example, may be restricted to facilities equipped with ramps or sufficiently wide hallways to accommodate this assistive device. Persons with disabilities that affect hearing, speech, reading, writing or comprehension may also require supports for to overcome communication barriers.
Additionally, members of this community often have pre-existing relationships with the health system that are characterized by distrust. There is a long history of paternalism toward persons with disabilities, including widespread institutionalization of those with diverse physical, cognitive and communicative abilities in Ontario and elsewhere.As a result, institutionalization is viewed as the “worst case scenario” by many who would prefer to live at home with support or in supportive housing with the addition of palliative care services.
The LCO has heard that transitions to long-term care for Ontarians with disabilities is a particularly sensitive area that merits attention. Stakeholders expressed concerns about the perception that long-term care is a form of “re-institutonalization,” that long-term care homes are often not equipped to deliver personalized care for those with complex needs, and that existing care services could be better enabled to adapt to the changing needs of persons with disabilities as they age. Some individuals are particularly underrepresented in terms of supports for independent living, such as young persons with disabilities who may not fit into a system geared toward older adults. Clearly, addressing these concerns require innovative partnerships across Ontario’s health and social care sectors.
These and other difficulties addressing the needs of persons with disabilities who are nearing the end of life can be summarized as follows:
- Lack of attention to the complex needs of persons with disabilities in the last stages of life, including accommodations in facilities and access to palliative care
- Attitudinal barriers about persons’ abilities, including their capacity for treatment decision-making
- Lack of supports for communication barriers
- Difficult relationships with the health care system arising from social discrimination, including institutionalization
- Insufficient integration across health and social sectors.
There are select initiatives in Ontario that adopt a collaborative approach to address the concerns of persons with developmental disabilities nearing the end of life. For example, the Ontario Partnership on Aging and Developmental Disabilities (OPADD) is a network of partners including the MOHLTC, Ministry of Community and Social Services (MCSS) and medical facilities. OPADD has a Transition Taskforce that works on achieving a continuum of care.
The MOHLTC and MCSS also developed a joint protocol for persons with developmental disabilities transitioning to long-term care, called the Long-Term Care Homes Access Protocol for Adults with Developmental Disability. The protocol is currently being revised; however, to our knowledge it does not specifically address issues nearing the end of life, including palliative care.
As with the other communities explored in this project, we hope to learn more about further steps that might improve the dignity, participation and equality of persons with disabilities nearing the end of life.
E. Access to Justice as a Matter for Law Reform
Insofar as fostering equality and access to justice nearing the end of life is a priority for the LCO’s project, we must turn our minds to how this might be achieved, specifically, as a matter of law reform.
In this chapter, we reviewed connections between legal rights and principles, and access to services and supports. We showed that equality rights as well as other rights and principles provide a rationale for responding to Ontario’s diverse communities in a manner that respects their dignity, participation, equality and safety. (Previously in chapter 3.C, we also gave an overview of foundational laws in this area.)
Furthermore, we summarized some of the government’s prior commitments to equitable palliative care, and feedback the Province has received from stakeholders requesting that a “tailored” approach be used.
Taking into account all of these considerations, the LCO would like to know what Ontarians believe our role is in making recommendations regarding communities with unmet needs.
For instance, the LCO’s project could recommend that the Ontario government’s palliative care strategy, which is currently being formulated, adopt measures to ensure customized approaches to care for specific communities with unmet needs. This might include that any ongoing initiatives to standardize principles and eligibility criteria also account for persons who are often not identified for palliative care, such as older adults with serious frailties and persons with disabilities. We might include suggestions relating to the formal recognition of caregivers within the palliative care strategy. Among other matters, we might also propose that measures be adopted to ensure services are extended to care settings that currently struggle to provide residents with equitable care, such as group homes, shelters and long term care homes.
Another point of entry into law reform could consist of our assessing legal frameworks that affect diverse communities for their inclusion of relevant provisions concerning the last stages of life. For example, the LCO could analyze laws and policies within the provincial human rights system to determine whether they provide adequate protections for communities that are underrepresented in the health care system.
Finally, the LCO could intentionally focus on different communities to make targeted recommendations about their unique circumstances, such as caregivers, persons experiencing homelessness, First Nations, Inuit and Métis peoples or others.
Our goal in suggesting these options is to add value to reports that have already been released in this area – to take the next step in making recommendations that are responsive, concrete, precise and implementable.
At this stage of the project, we simply ask that members of the public comment on these options from a law reform perspective, so that we can refine our analysis in our consultations and, eventually, our later reports.
F. Questions for Discussion
7. What are your experiences as a member or supporter of a community of need going through the last stages of life?
8. What law reforms do you believe are needed for communities with unmet needs, and how would such reforms be most effectively implemented in law?
9. Are there any communities with unmet needs who are not identified in this paper that the LCO should consider?