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 w