Despite significant progress to advance palliative and end-of-life care, there continues to be inadequate and inequitable access to integrated and comprehensive palliative and end-of-life care in Canada. In a recent study, Canada ranked 9th globally in a "Quality of Death" index. In addition, only 16 to 30% of Canadians who die have access to, or receive, hospice palliative or end-of-life care services.
With respect to Ontario, approximately 1% of the population dies each year, and data shows that we can expect an increasing trend in number of deaths each year. For Canada as a whole, statistics suggest that only 3% of us will die suddenly, and that the remaining 97% may require some form of assistance with end-of-life care. Recent Ontario provincial data estimates that at least 12% of those individuals would be best served in residential hospices.
Residential hospices are non-profit healthcare facilities that provide specialized hospice palliative care beds and services in a homelike setting for the residents they serve and their families. In Ontario, there are currently a total of 311 residential hospice beds across 45 sites, 16 of which are dedicated for pediatrics.
In 2014, the Auditor General of Ontario noted that residential hospice beds cost $460 per day while acute-care hospital beds cost $1,100 per day. Despite the fact that residential hospices could free up much needed acute care hospital beds and reduce overall health care costs, hospice palliative care remains significantly underfunded. There is very little or no Ontario government funding for the capital costs of residential hospices, all of which must be raised from private donations or other fundraising. Hospitals in Ontario on the other hand only need to fundraise 10% of their capital costs. The Ontario government funding of the costs of operation of residential hospices is limited to nursing and personal support care worker costs. The balance of the costs of operation – which is a significant amount – must be raised from private donations or other fundraising.
In an effort to begin to address these issues, the Ontario Ministry of Health and Long-Term Care announced on March 11, 2016 an investment of an additional $75 million, over three years, to provide patients with more options and access to palliative and end-of-life care. This investment is intended to facilitate the creation of up to 20 new residential hospices. In total, the Ontario government is set to devote $155 million, over the next three years, to hospice and palliative care programs.
In addition to making this announcement, the provincial government also released the Palliative and End-of-Life Care Provincial Round Table Report (the "Report") which compiles feedback from consultations that included more than 325 stakeholders across the province.
This Report is a response by John Fraser, MPP, Parliamentary Assistant to the Minister of Health and Long-Term Care, to a 2014 mandate that tasked Mr. Fraser with several responsibilities, including supporting the development of a comprehensive strategy on palliative and end-of-life care and overseeing the expansion of hospice care to include 20 new hospices across Ontario.
The Report acknowledges and builds on the 2011 Declaration of Partnership and Commitment to Action" (the "Declaration"), a collaboration of over 80 stakeholders from across Ontario, that sets out a comprehensive vision for palliative care and the steps required to achieve that vision. Central to that vision is a system that is patient-centric and that responds in a coordinated way to the goals and needs of patients and their families.
In addition to acknowledging the criticality of system integration, highlighted in the Declaration, the preamble of the Report references the goals and priorities identified in Patients First: Ontario's Action Plan for Health Care ("Patients First") a document released by the Ontario government in 2015. One of the prerequisites identified by Patients First as being pivotal to the delivery of better coordinated and integrated care in the community is the provision of palliative care at home or out-of-hospital.
The Report is structured around five common themes identified by the stakeholders; (i) expanding equitable access and integration, (ii) strengthening service capacity, (iii) improving caregiver supports, (iv) enhancing public education and awareness and (v) establishing oversight and accountability. These themes are intended to build on and further the work that has been done to date. In the last section of the Report, Mr. Fraser sets out what he believes to be important next steps. These include; (i) reducing the stigma associated with palliative care,(ii) promoting advanced care planning, (iii) respecting patient choice, (iv) providing equitable access to palliative care and (v) building community connections and capacity.
In addition to the work that has been done by Mr. Fraser, it is important to note the final report (Strengthening Ontario's End of Life Continuum: Advice Regarding the Role of Residential Hospice) written by the Residential Hospice Working Group and released in March, 2015. The advice set out in this report builds on the Declaration. However, it provides a more granular analysis of the priorities and actions, as well as capacity and planning models required to strengthen the end-of-life continuum of care in Ontario and optimize the role of residential hospices. It also introduces a principled and systematic approach to capacity planning for palliative care services .
The infusion of an additional $75 million into the area of hospice palliative and end-of-life care, in conjunction with the government's commitment to make death and dying a critical and integrated element of the continuum of care, will help to enhance a person's quality of life prior to death and better enable Ontarians to die in the location and circumstances of their choice. At this time, however, the allocation of the $75 million remains unclear. Possibilities include (i) using the funds to build the 20 new residential hospices that formed part of Mr. Fraser's mandate; (ii) using the funds to expand the scope of government-funded residential hospice operational costs to encompass more than just nursing and personal support worker costs; and/or (iii) using the funds for other areas and priorities on the spectrum of palliative and end of life care.