Issue
Society is changing and current health care models are not fully meeting the needs of many Ontarians. At risk populations include people with serious illness, at end of life, the elderly, the disabled, people who are isolated and vulnerable, and caregivers. These groups benefit from whole person care that addresses physical, mental, social and spiritual needs, focuses on quality of life, acknowledges mortality and supports their caregivers – such care however is not routinely, seamlessly or continuously available through formal health services.
Social isolation and loneliness are emerging as critical public health issues, presenting high, but potentially modifiable risks, to morbidity, disease burden and premature mortality. Decades of evidence suggest a profound relationship between social participation, health and well-being – having positive social relationships reduces distress, improves quality of life and protects against high acuity healthcare use and early mortality. Community social capital is an often untapped, yet readily available and renewable resource that can enhance formal healthcare system delivery by addressing the social determinants of health and the practical and spiritual needs of individuals and families.
To address this issue a health promoting palliative care concept was first introduced in 1999 by Dr. Allan Kellehear, a Professor of Palliative Care at Middlesex University in London, UK, in his book ‘Health Promoting Palliative Care’.[1] Professor Kellehear criticized current palliative care models for focusing on a distress-oriented approach to life-threatening illness rather than interventions that promote overall well-being. “Compassionate Communities” was then introduced as a practical model of the health promoting approach to palliative care.
What is a Compassionate Community?
A Compassionate Community is a community of people who feel empowered to engage with and increase their understanding about the experiences of those living with a serious illness, caregiving, dying and grieving and those who are isolated, marginalized or vulnerable. Community members will take an active role in caring for people, assist people to live comfortably in their homes, connect people to supports, raise awareness about health, well-being and end of life issues, and develop the capacity of others by building supportive networks in the community. A community may be people who live near each other, in a city, town, or a neighbourhood. It may also be a group of people who have a common interests, goals, or experiences, such as co-workers, members of a faith community, or even members of a book club, running group, or online group.
Each community adopts its own approach to building more compassion in response to its needs. Members of a Compassionate Community recognize that these experiences are a part of everyone’s journey through life and that they can happen at any time. They also recognize that care for one another at times of health crisis and grief is not a task solely for health and social services but is everyone’s responsibility. Compassionate communities compliment health care interventions by paying attention to prevention, detection, harm reduction, and early intervention. Compassionate communities provide a road map for care in neighbourhoods and alter social environments to improve outcomes. It celebrates diversity and is inclusive of all.
The Compassionate Communities model aims to de-professionalize and de-medicalize end-of-life care, return it to the community, and build up social capital that can then be mobilized when citizens come to the end of their life.[2]
Ontario Compassionate Communities Provincial Strategy
In response, Hospice Palliative Care Ontario is leading a provincial strategy called the “Compassionate Community” (CC) program that strengthens and bridges physical, mental, social and spiritual care to meet the needs of at-risk populations. This program has the potential to both improve quality of life and reduce ED admissions at a population level. It comprises:
- surveillance tools and technologies that detect/ predict important risks to health, well-being and mortality;
- community development efforts to modify social environments and change social norms and
- goal planning and support targeting high risk individuals.
Through community partnerships, compassionate communities increase awareness and create social support networks around those with long term illness or coping with grief and loss. The model provides for early detection of palliative care needs, addresses the unmet needs of people who fall through the cracks of regular systems because of poverty, isolation or other social determinants of health, and compliments primary care, home care, and team-based models of care such as Ontario Health Teams.
The figure below shows the integral role community plays in providing support to both the patients and caregivers. Approximately 10% of support would come from the formal health care system while 90% would come informally from the community (HPCO, Compassionate Communities CoP, 2019).
The Ontario Compassionate Communities strategy is coordinated by HPCO under a Communities of Practice framework. This allows organizations that are implementing a Compassionate Communities program across Ontario to be more interconnected; having access to sharing knowledge and information. Currently there are over 17 projects across 12 LHIN regions each implementing different kinds of projects or initiatives to stoke community engagement and participation (HPCO, 2019).
HPCO also supports a Community Research Collaborative comprised of 30+ researchers from across Canada who are exploring research frameworks and methodologies to capture data about effectiveness and public health impacts. We are also currently partnered with the BC Centre for Palliative Care and Pallium Canada to help advance this work. Together we are developing a national evaluation tool to measure the work of Compassionate Communities across the country.
Public Health Approach to Palliative Care
Why has palliative care become such an important public health issue? More than a decade ago the World Health Organization made a global call for all countries to consider palliative care as a public health problem and include it in their health agendas.[3] Since then an increasing number of health systems across the world started to look into the escalating unmet care needs of the frail elderly and terminally ill people, and many concur with the WHO that palliative care is indeed a public health issue. [4] [5]
Like elsewhere in the developed world, end‐of‐life care provision in Canada is facing extreme challenges due to the rapidly evolving palliative care practice, socio‐demographic changes in the end‐of‐life context, and health care system constraints.[6] These challenges have led to palliative care being on public and government agendas across Canada as an increasingly important public health issue.[7]
Evidence of Successful Outcomes
Reducing emergency admissions to hospital has been a cornerstone of health care policy. Previously, there has been little evidence of systematic interventions which achieved this aim across a population. In Frome, Somerset, primary care patients were identified using broad criteria and offered patient centred goal setting combined with a compassionate community social approach. This resulted in a progressive reduction, by 7.9 cases per quarter (95% CI: 2.8, 13.1; p=0.006) in unplanned hospital admissions across the whole population of Frome, over the study period from April 2014 to December 2017. At the same time, there was sharp increase in the number of admissions per quarter, within the Somerset, with an increase in the number of unplanned admissions of 236 per quarter (95% CI: 152, 320; p<0.001). Frome has also seen a 20.8% reduction in costs in 2016 to 2017 compared to 2013 and 2014. The study concluded that the Compassionate Community Frome initiative was associated with highly significant reductions in unplanned admissions to hospital with reduction of healthcare costs across the whole population.
Additionally, a report was commissioned by the British Columbia Centre for Palliative Care (BC CPC) in August 2015 to provide evidence base for the effectiveness of the public health approach in addressing these concerns and issues. The report entitled The Public Health Approach to Palliative Care Principles, Models, and International Perspectives delivers an in-depth understanding of the public health approach principles and elements and describes exemplary public health palliative care (PHPC) models.
The experience of Spain, United Kingdom, Australia, Japan, and India with PHPC models are presented in detail in this document. The experience of Germany, Italy, and France, Norway, and Hawaii with the public health palliative care models are described in other publications.[8] [9] [10] [11] [12] The report is based on a review of peer reviewed journal articles, books, reports and websites of governmental and non-governmental organizations and other grey literature. In addition, the report findings are informed by consultations from palliative care leaders and researchers in BC.
More locally, we are just beginning to collect both qualitative and quantitative data on the Ontario Compassionate Communities projects to monitor and describe both individual and system outcomes.
Join the Compassionate Communities Provincial Strategy
If you are leading a Compassionate Communities Initiative in your area or are organizing a community engagement session in Ontario – you may be interested joining the Community of Practice Project Membership Team. The Project Membership Team provides leaders with an opportunity for resource sharing, training, education and experience discussions to help grow and strengthen your local project.
If you are wanting to learn more about the Compassionate Communities strategy and how you can get more involved – you may be interested in joining the Community of Practice General Membership which is open to any individuals interested in, considering, or working in a structured organization participating in a Compassionate Community/City initiative in Ontario
Or contact Nav Dhillon, Community of Practice Coordinator at nav.dhillon@hpco.ca for more information.
[1] Kellehear A. Health Promoting Palliative Care. Oxford Press, Australia: 1999
[2] Abel J., Bowra J., Walter T., Howarth G. Compassionate community networks: supporting home dying. BMJ Supportive & Palliative Care 2011; 1:129–133.
[3] World Health Organization: Palliative Care www.who.int/cancer/palliative/en/ WHO
[4] Higginson IJ., Koffman J.: Public health and palliative care. Clin Geriatr Med 2005; 21(1):45–55, viii.
[5] Stjernsward J., Foley KM., Ferris FD. The public health strategy for palliative care. J Pain Symptom Manage 2007;33(5):486‐93
[6] Canadian Hospice Palliative Care Association. Fact Sheet: Hospice Palliative Care in Canada. Canadian Hospice Palliative Care Association 2014
[7] Williams et al. Canada’s Compassionate Care Benefit: Is it an adequate public health response to addressing the issue of caregiver burden in end‐of‐life care? BMC Public Health 2011; 11:335
[8] Braun KL et al. Kokua Mau: a state-wide effort to improve end-of-life care. Journal of Palliative Medicine, 2005, 8:313–323.
[9] Kaasa S, Jordhøy MS, Haugen DF. Palliative care in Norway: a national public health model. Journal of Pain and Symptom Management, 2007, 33:599–604.
[10] Radbruch L., Foley K., De Lima L., Praill D., Furst CJ.: The Budapest Commitments: Setting the goals: A joint initiative by the European Association for Palliative Care, the International Association for Hospice and Palliative Care and Help the Hospices. Palliat Med 2007:269–271
[11] http://www.eapcnet.eu/Home/tabid/38/ctl/Details/ArticleID/1111/mid/878/Default.aspx
[12] Schneider N., Lueckmann S.: Developing targets for public health initiatives to improve palliative care. BMC Public Health 2010:1–9
,
