Palliative Care In Ontario
“Palliative care is aimed at relieving pain and suffering and improving the quality of life for people who are living with, or dying from, an advanced illness or are bereaved. Palliative care aims to meet not only physical need, but also the psychological, social, cultural, emotional and spiritual needs of each patient and his or her family” (Office of the Auditor General of Ontario, 2015). For the purposes of this research project, “palliative care,” “hospice care,” “hospice palliative care” and “end-of-life care” have the same meaning.
The delivery of palliative care services in Ontario has a short history, marked by inconsistency in service delivery and inequitable access (Office of the Auditor General of Ontario, 2015). As the aging demographicmoves towards age 65, there will be increased pressure on the healthcare system to meet the needs and expectations of baby boomers, who often do not have adult children that live in close proximity (Arnup, 2013) and who may not be able to provide in-person care support if needed.
The History of Palliative Care
The concept of palliative care in Ontario is a relatively new one. Although the term was first conceived in Montreal in 1976, the definition of palliative care was created in 1981 by the Toronto-based organization Palliative Care Foundation (later renamed the Ontario Palliative Care Association). After amalgamating with the Hospice Association of Ontario to form Hospice Palliative Care Ontario in 2011 (Williams, Kelley, Dykeman & DeMiglio, 2014), the organization continues to focus on advocating for quality hospice palliative care in Ontario (hpco.ca, 2015).
It wasn’t until 1992 that the Ministry of Health allocated $4.8 million in funding to four palliative care initiatives. In 2005, the renamed Ministry of Health and Long-Term Care (MOHLTC) announced the End-of-Life Care Strategy: $115.5 million in funding to be distributed over three years, with the goal of integration, coordination and quality of care for palliative care in Ontario (Williams, Kelley, Dykeman & DeMiglio, 2014).
This initiative was an important one for the palliative care movement in Ontario, as “there had never been targeted funding for palliative end-of-life care in Ontario for actual service delivery until the October 2005 End-of-Life Care Strategy funding” (Williams, Kelley, Dykeman & DeMiglio, 2014). Although some progress was made towards the goals defined by the strategy, the End-of-Life funding ended in 2008, leaving palliative care providers and advocates with no financial support to move towards a more integrated system.
Today, palliative care services and support are housed within an Ontario healthcare system that is complex, highly bureaucratic and defined by rising costs and limited resources (Canadian Caregiver Coalition, 2013).
Healthcare spending accounts for over 40% of the province of Ontario’s spending (Speer & Palacios, 2014). As the Ontario government continues to face the challenge of reducing the substantial acquired provincial debt, there is a primary focus on reforming the healthcare system to “put patients first,” while acknowledging current financial limitations (Ministry of Health and Long-Term Care, 2015).
Like many Western countries, Canada is also on the cusp of experiencing a demographic shift: the number of people aged 65 and over increase dramatically over the next 20 to 30 years, as baby boomers age (Arnup, 2013). In 2011, the percentage of Canadians in retirement accounted for 14.4% of the population. By 2021, that number will increase to 18.5% and increase again to 24% in 2031. Adding further strain to the healthcare system is increasing life expectancy. On the whole, Canadians are living longer, but with more complex care needs (Arnup, 2013).
The reality is that, by the time the aging population reaches its apex, more than 425,000 people will die each year in Canada (Quality End-of-Life Care Coalition of Canada, 2010)—up from 245,000 in 2010 (Statcan.gc.ca, 2014). Almost 40% of those deaths will occur in Ontario and, considering that each death “affects the immediate well-being of approximately five other people” (Gauvin, Abelson & Lavis, 2013), the impact will be significant.
Statistically, it is clear that the aging population will create many challenges for the healthcare system in Ontario. So where does this leave palliative care? Unfortunately, the current system of palliative care in Ontario is “a patchwork of services with very little integration, a lot of overlap and significant gaps” (Gauvin, Abelson & Lavis, 2013). Despite advocacy for increasing services and support, palliative care in Ontario is marred by inequitable access to programs that are not consistent across the province (Office of the Auditor General, 2015). As well, the need for palliative care services greatly outweighs current programs and services. Research conducted by the Canadian Institute for Health Information indicates that only 16% to 30% of Canadians are able to access palliative or end-of-life services, despite the estimation that as many as 90% (Gauvin, Abelson & Lavis, 2013) of patients would benefit from such services. Training and education in a palliative care approach is also not meeting the demand, as front-line staff often consider themselves lacking specific knowledge and skills for providing care at end-of-life (Gauvin, Abelson & Lavis, 2013).
Challenges with Delivery
In December 2014, the Office of the Auditor General of Ontario released a report assessing the state of palliative care in Ontario. Although the last decade has brought attention to the need for palliative care, both provincially and federally, Ontario still lacks a strategic-policy framework and a province-wide system for the consistent delivery of palliative services (Office of the Auditor General of Ontario, 2015). For patients at end-of-life, there are four possible ways to access palliative services: in the home, where Community Care Access Centres (CCAC) facilitate support; hospitals; hospices; and long-term care facilities. In 2005, the Ministry of Health and Long-Term Care launched a three-year initiative to provide end-of-life funding. This initiative also included the objective to shift end-of-life care from acute care environments into the community—primarily the home and hospices (Office of the Auditor General of Ontario, 2015). Although the three-year initiative realized some improvements, “inequities and barriers to accessing end-of-life care still existed across regions and service sectors in Ontario” (Office of the Auditor General of Ontario, 2015).
In response, a collaboration of palliative care stakeholders, including the MOHLTC, LHINs and the Quality Hospice Palliative Care Coalition of Ontario, created a vision for palliative care in Ontario in 2011, titled “Advancing High Quality, High Value Palliative Care in Ontario: A Declaration of Partnership and Commitment to Action” (Office of the Auditor General of Ontario, 2015) with a focus on improving the delivery of palliative care in Ontario.
However, recent statistics still suggest that there is inadequate support for home care, with over 70% of Canadians dying in an acute care hospital (Gauvin, Abelson & Lavis, 2013), despite research indicating that more than half of Canadians would choose the home environment for their end-of-life care (Environics Research Group, 2013).
Where is Distance?
Despite acknowledging the increased healthcare demands that will accompany the aging demographic, and the reality that adult children often do not live in close proximity to their parents, there is a gap in current palliative care discussions that has the potential to cause additional stress to an already-strained healthcare environment. Although distance between family members is acknowledged as part of modern family life, there is little discussion on the impact of distance, either to patients and caregivers or to the healthcare system. As well, there are no proposed initiatives to support patient and family-centred care when distance is a factor. If the healthcare system in Ontario is to support the shift away from acute care facilities and into the home, greater attention should be paid to the family support that will be available to support the patient and the caregiver.