A.    Introduction

This chapter summarizes Ontario’s laws, policies and programs. After this chapter, the remainder of the discussion paper analyzes issues that might benefit from reform.

The chapter begins with an overview of Ontario’s regulatory framework for health care funding, planning and delivery. Then, it situates palliative care, health care decision-making, medical assistance in dying and dispute resolution within that framework. Finally, the chapter briefly reviews a number of specific laws that are separate from but intersect with these areas.

As Ontario’s health care system is presently in a state of change, the chapter focuses on providing summary information about the existing regulatory landscape.

B.    Framework for Health Care Funding, Planning and Delivery

1.      Overview of the Ontario’s Regulatory Framework

In chapter 3 we introduced the constitutional foundation for health care in Ontario, which is grounded in the division of powers between the provincial and federal governments. The federal government uses its constitutional spending powers to transfer funds to provinces that provide health care services through insurance plans – OHIP is Ontario’s health insurance plan. Service planning and delivery then rests largely with the provinces.

The legislation governing this arrangement, the Canada Health Act, only covers medically necessary services provided by hospitals and physicians. There is a range of so-called extended health services that are not funded by the federal government and that are significant for the last stages of life, including medications outside hospital and most palliative care provided in private and long-term care homes. As a result, in addition to overseeing the planning and delivery of medically necessary care, Ontario supplements the CHA with provincial funding.

However, there may be limits to eligibility for provincially funded services and some services may receive partial or no funding. For instance, patients who are receiving complex continuing care in hospitals while waiting for admission to long-term care may be required to pay a co-payment for the cost of their meals and accommodation.[145] Once in a long-term care home, residents must also make co-payments for food and accommodation. If a resident is in standard/basic accommodation and is unable to afford the co-payment rate, they may be eligible for financial assistance and have their co-payment amount reduced based on their income.[146]

Retirement homes are an example of an entirely private arrangement. Retirement homes are regulated under the Retirement Homes Act, 2010, but residents are legally tenants who also have rights under the Residential Tenancies Act, 2006.[147] Retirement homes may, but are not required to, offer care services that meet the needs of persons nearing the end of life.[148] In this project, we review concerns that stakeholders raised about palliative care in retirement homes (see chapter 5, “Access to Justice for Communities with Unmet Needs”).

In the following section, we set out Ontario’s existing framework for publicly funded care in the last stages of life. It should be recalled that some of these services may still require co-payments.

2.      Framework for Publicly Funded Care in the Last Stages of Life

Ontario’s framework for publicly funded health care is decentralized. The MOHLTC has overall responsibility for the sector; however, significant planning, funding and accountability functions are delegated to agencies that operate within 14 separate regions across the province.

Despite this distribution of authority, the MOHLTC maintains control over certain matters. It provides partial funding for residential hospices.[149] It funds primary care, physician fees, medications covered in hospital, and other drug programs.[150] It also plays a role in funding and regulating public health initiatives.[151] Moreover, the MOHLTC has a stewardship role that focuses on regulation, strategic planning, policy development and rule-making, investment, performance and accountability for the whole system.[152]

Beneath the MOHLTC sit the Local Health Integration Networks. LHINs are Crown agencies charged with promoting the integration of local health systems within their respective regions under the Local Health System Integration Act, 2006.[153] LHINs plan, fund and ensure the accountability of wide-ranging health services delivered in hospitals, long-term care homes and community support services, as follows:

Hospitals provide many essential services to persons with life-limiting illness in departments, including emergency, intensive care, complex continuing care and palliative care units. Some hospitals also have palliative care consultation teams that visit patients in other wards.[154] Hospital-based palliative care programs and consultation teams may also offer day programs and make house calls.[155] Public hospitals operate under the Public Hospitals Act.[156]

Long-term care homes are “home” for thousands of individuals, many of whom may experience serious frailties, including chronic conditions and dementia.[157] Almost one third of the residents in long-term care pass away each year.[158] The Long-Term Care Homes Act, 2007 requires licensees to train all staff who provide direct care to residents on palliative care.[159] Licensees also have a statutory duty to “ensure that every resident receives end-of-life care when required in a manner that meets their needs”.[160]

Community support services include a mix of initiatives run by community agencies.[161] Visiting hospice programs stand out as an example in this area: their volunteers serve thousands of Ontarians with daily living support, respite for caregivers, counselling, and recreational activities, among other services.[162]

LHINs also fund and oversee CCACs, which are independent agencies that facilitate access to home and community care under the Home Care and Community Services Act, 1994.[163] CCACs coordinate admissions to long-term care and assess eligibility for a range of services provided in the home.[164] The Act stipulates a maximum number of hours that individuals can receive for homemaking and personal support services.[165] In practice, however, CCACs determine eligibility for services.[166] Persons eligible for palliative care may be able to receive added services to help them die at home and their caregivers may also receive supports.[167]

Cancer Care Ontario operates beneath the MOHLTC in parallel with LHINs. Under the Cancer Act, CCO plans, funds and ensures the accountability of services for persons with (or at risk of developing) cancer and kidney disease.[168] CCO manages regional cancer programs in each of Ontario’s 14 regions and works with LHINs and providers to deliver care in different settings.[169]

Finally, the Ontario Palliative Care Network is a recent addition to Ontario’s provincial approach. As discussed below, Ontario has experienced immense difficulties achieving equitable access to palliative care due to a lack of coordination across our decentralized institutional framework and care settings, and a lack of unifying policy. The OPCN was introduced to improve the quality of and equitable access to palliative care for all Ontarians. We discuss the OPCN’s history and mandate in more detail in section C.2, below.

  • Readers should be aware that this description of Ontario’s framework (and Figure 2) will be changing in the near future as a result of a legislated restructuring of the system through the recently enacted Bill 41, Patients First Act, 2016.[170] Bill 41 gives the LHINs enhanced responsibility over home and community, primary care and public health care. Most importantly for this project, the LHINs will assume the current responsibilities of the CCACs and sub-regions would be created to deliver care across the 14 LHIN regions.

Ministry of Health and Long-Term Care

 

Pharmaceuticals

 

Primary Care

 

Regional LHINs

 

Cancer Care Ontario

 

Residential Hospices
Medications in hospitals are covered under OHIP.

 

MOHLTC funds and oversees most primary care, which is “first-contact” care such as Family Health Teams. MOHLTC funds 14 LHINs.

 

CCO oversees cancer and renal care through 14 regional programs.

 

MOHLTC funds residential hospices, many of which also receive private funds.

 

Eligible individuals can receive certain drugs outside hospital under programs such as the Ontario Drug Benefits Program.

 

LHINs fund and oversee Community Care Access Centres, which purchase and facilitate access to home care services, including palliative care and respite. CCACs set eligibility requirements and coordinate placements in long-term care homes.
LHINs fund and oversee hospitals, including palliative care units and consultation teams.
LHINS fund community support services, including visiting hospice, pain and symptom management nurse education and day programs.
LHINs fund long-term care.
Some LHINs have developed different palliative care networks that are linked at the provincial level.

Ontario Palliative Care Network

  • Executive Oversight (representation from LHINs, CCO, HQO, and QHPCCO)
  • Secretariat
  • Advisory Councils
  • Regional Palliative Care Networks (for each of Ontario’s 14 regions)

C.     Palliative Care

1.      What is palliative care?

The term “palliative care” describes both a philosophy of care and a wide-range of services that are provided to realize the philosophy for individuals and society at large.

Referring to palliative care as a “philosophy” captures its nature as a general approach to providing care that is rooted in assumptions, values and principles.

For example, the World Health Organization describes palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness…”, among other characteristics.[171] In Ontario, the MOHLTC, LHINs and Quality Hospice Palliative Care Coalition of Ontario define palliative care as,

 [A] philosophy of care that aims to relieve suffering and improve the quality of living and dying<