At present, people dealing with a life threatening illness, or the frail elderly, face significant challenges in our community. Despite the significant efforts by the thousands of natural care givers, volunteers and health care professionals, supporting seriously ill people being cared for in the community and their family caregivers is difficult to sustain.
Current palliative care services in our community are not sufficiently resourced to provide people easy and timely access, equity of access and the quality of care and support that are needed. This situation will only get worse as our population ages. It is unlikely that we will be able to rely on government to meet the ever increasing gap between services and the need.
Research has shown that a good death requires not only access to excellent medical care but also to non-medical aspects such as psychological, social and spiritual support. Lack of social support and caregiver burnout are often the cause of hospitalization, even though most people want to be cared for at home. People above all want to be surrounded by their family, friends and loved ones. They want to be in their familiar surroundings and carry on their preferred activities as much as they can. People want to focus on living until the end of their lives.
Palliative care as a concept has evolved and is very often misunderstood. Today, palliative care is not only about care in the last few weeks of life. All people with an advanced chronic illness or terminal illness can benefit from palliative care, not only those with a cancer diagnosis. The palliative approach offers an added layer of care and support and can be combined with other medical treatments aimed to control pain and symptoms and improve quality of life. It focuses on maintaining quality of life and emphasizes the psychological, social and spiritual aspects of care. Research has demonstrated that beginning palliative care early not only improves quality of life and but also increases the likelihood that people will die at home if that is their choice. In some cases initiating palliative care early has even been shown to increase length of life.
Many people living in Ottawa are motivated to reach out to help those they care about in times of need. We often see this help in time of crisis such as a natural disaster, such as a flood or storm. There are also many people that now provide care to loved ones who are seriously ill or dying. Many people also reach out to offer support to their friends and families around death, dying and grief. These people are part of strong social networks that help each other.
However, other people are socially isolated or living far away from family and friends. People may have no supports in the neighbourhood or workplace. In addition, some people who want to help a family, friend or neighbour do not know how to approach them or what they can do. We do not talk about issues of death, dying, loss and grief very often. Family, neighbourhoods and other social groups may lack traditions to guide members about ways of helping people. Compassionate Ottawa seeks to support and empower Ottawa citizens to help others who are experiencing death, dying, loss and grief.
A SOCIAL MODEL OF PALLIATIVE CARE
Compassionate Ottawa’s approach is based on a social model that focuses on the community’s role in palliative care. It is citizen-focused and citizen-driven, builds on citizens’ experience and vision, and incorporates existing natural helping networks and community resources*.
A social model of care recognises that dying is not fundamentally a medical event, but rather a social event that happens in the family and the community. Dying is an expected life transition that needs support from the social environment. It needs to be prepared for by all citizens and socially supported by the community before, during and following a death. A death is recognised as a loss to the community as well as to the family and friends.
A social model of care recognizes the essential role played by health care professionals. In turn health professionals and their institutions must believe the community is capable of providing the services required to fulfill its social needs and they should accept that their role is temporary and accessory.
Community development is at the heart of a social model of care. It seeks to empower individuals and groups of people to effect change in their own lives, and in the lives of their families, friends, and neighbours. The community development process involves individuals using the knowledge they have gained through experience and supporting them with the skills and resources they need to effect change. It is a facilitating role rather than a service provider role. The change process is driven and controlled by the individuals affected and groups will identify their needs for additional knowledge and skills as these emerge. Needs will vary among individuals and groups.
* This section draws on the work of Dr. Mary Lou Kelley, Dr. Allan Kellehear, and the report, “A Public Health Approach to Palliative Care, A White Paper for the BC Centre for Palliative Care, August, 2015”.
Compassionate Communities aim to accommodate dying, death and loss into public health and health promotion ideas and to create supportive environments for these experiences. Compassionate Communities assume that citizens are inherently compassionate and already motivated to reach out to help their family, friends, neighbours and others they care about when faced with death, dying, loss and grief. The goal is to support and empower individuals in expanding their efforts.
Using a community development approach, Compassionate Communities seek to engage social organisations such as education institutions, workplaces, faith organizations, cultural institutions and others groups to develop their own palliative care policies and practices as part of the a broader community initiative. Local government and health care providers are resources to the work of these groups.
The idea of compassionate communities as a health promoting palliative care concept was presented by Dr. Allan Kellehear in his book, “Compassionate Cities: Public Health and End of Life Care”, 2005.
Compassionate City Charter
The Compassionate City Charter was introduced by Dr. Kellehear as a result of further thoughts on the topic. It describes the 13 social changes to the key institutions and activities of a city in order to embrace community empathy and help reduce the negative social, psychological and medical impacts of serious illness, caregiving and bereavement in society.
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