‘Compassionate Ottawa’ recognizes that care for one another at times of crisis and loss is everyone’s responsibility

By Louise Rachlis

Seventy-five per cent of Canadians recently polled say they want to die at home. Seventy per cent actually die in the hospital. Why is there such a huge gap between our end of life wishes and the actual outcome?

That’s a question being asked by Claudia Chowaniec and other members of the new Compassionate Ottawa initiative. “My husband was in a chronic care cancer ward,” said Chowaniec. “He was actively dying. He said, ‘I want to go home.’”

Claudia was exhausted and overwhelmed by years of caregiving. “How was I going to fulfill his last wish? Time was very short,” she said. “With a lot of effort and persistence I pulled together the resources we needed, but it wasn’t easy. I finally managed to get him home.”

That meant that family, neighbours and friends could come by to help and support at any time of day and night. “Suddenly I wasn’t on my own anymore,” she said. “A palliative care community-based doctor came each day to administer the pain management drugs, and equally important, to answer the difficult questions we had, such as ‘What will dying be like? How will we know when death is imminent?

Her husband died at home a week later, with her and her daughters all holding hands together.

 Last November a cross-section of community and palliative care health delivery organizations met to explore the idea of Ottawa becoming a “Compassionate Community,” a public health approach to end of life care.

The result of that meeting was “Compassionate Ottawa,” working to make Ottawa more compassionate for people diagnosed with life-threatening illness. Their draft tag line is “Reimagining Palliative Care.”

The coordinating group for “Compassionate Ottawa” consists of co-chairs Jackie Holzman and Jim Nininger, Claudia Chowaniec, Rob Cushman, Joanne Lefebvre, Barbara McInnes, Mac Evans and Maureen Molot. They are also compiling a group of project volunteers to assist.

“Many people believe that palliative care only kicks in the last few days of life,” said Jackie Holzman. “Not so. It is an approach that improves the quality of life of patients, families and communities facing life-threatening illness. It empowers families and communities with skills and resources, and strengthens social connectivity while preventing and relieving suffering by means of early intervention, assessment and treatment.”

“A successful implementation of a CC approach would result in a citizenry educated in how to access a coordinated network of resources,” said Jim Nininger.

“Conversations about death and dying would not be relegated to quiet corners, but would instead be expressed openly in the public sphere,” he said.  “Advanced care planning would become common practice in Ottawa.  There would be space for natural caregivers to give expression to their struggle with grief, loss, and to share their wisdom acquired through personal experience.”

According to the report on the November 2016 meeting, prepared by Cardus, those dealing with a life threatening disease face significant problems in our community.  “In spite of the significant efforts of thousands of natural care givers, volunteers and health care professionals, current palliative care services in our community are not sufficiently resourced to provide proper access, equity and quality of care and support to those who need it.  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 increasing gap between current services and the need.”

Research has shown that a good death requires not only access to excellent medical care, but also to the non-medical aspects of care such as psychological, social and spiritual support. “Lack of social support and caregiver burnout is often the cause of hospitalization even though most people want to be cared for at home.  Thus, the Compassionate Community approach champions a social model of palliative care that complements medical care.”

Compassionate Ottawa will not deliver any professional  services itself, but will work with health and social care organizations already in our community to link these resources with those in need. 

Compassionate Ottawa will be an independent operation of the OutCare Foundation, which is chaired by the Honourable Sharon Carstairs. OutCare will provide an office and charitable status that will help them raise funds.  They have also applied for a Community Foundation of Ottawa grant to launch the initiative.

According to the Compassionate City Charter, “Compassionate Cities are communities that recognize that all natural cycles of sickness and health, birth and death, and love and loss occur every day within the orbits of its institutions and regular activities.  A Compassionate City is a community that recognizes that care for one another at times of crisis and loss is not simply a task solely for health and social services but is everyone’s responsibility.”

The Compassionate Community Charter describes in detail 13 social changes to be committed to by a city in order to embrace community empathy and to help reduce the negative social, psychological and medical impacts of serious illness, caregiving and bereavement in society.

Ottawa is the host city for the 5^th International Health and Palliative Care Conference, September 17-20, 2017.  Compassionate Ottawa has been invited to make a presentation at this event and hopes to show the world that Ottawa is on the path to become a compassionate city. 

“We need to educate everyone about what is palliative care,” said Claudia Chowaniec, “and how to access the community-based resources that exist, as well as guiding people through the difficult decisions that need to be made at the end of a loved one’s life - and ultimately our own as well.”

To learn more about the Compassionate Ottawa initiative contact Jackie Holzman at 949jfh@gmail.com or Jim Nininger at jrnininger@rogers.com.