Creating the best ‘last chapter’ for palliative patients in the East Kootenays
Posted on August 10, 2021
If every person’s life is a story, the East Kootenay Shared Care Palliative Team is determined to create the best ‘last chapter’ for palliative patients in their community.
To that end, the East Kootenay Division team launched a project called ‘Open Conversations in Palliative Care’, bringing together palliative care providers from across the East Kootenay Region for information-sharing events.
Each event kicked off with a true, deeply personal story, called a “journey map” of one individual’s palliative journey, as told by a relative who had been by their side. Afterwards, palliative care providers – including physicians, allied health care providers, paramedics, families of patients, and members of other related organizations – engaged in facilitated discussions meant to nurture a more holistic, collaborative, and patient-centred approach to palliative care.
Physician Lead Dr Greg Andreas, a family physician in the East Kootenay Division of Family Practice, says one objective of these events was to encourage all palliative caregivers to be curious, to get to know, appreciate, and empathize with each patient as a person, understanding that they are on a journey with that person. He believes the best palliative care makes that journey as fulfilling as possible, every day.
“I could be living with a cancer, I could be living with a disease process that is taking the sands of my life – or my story – faster than maybe I anticipated,” he says. “But I’m still living every day, and that is part of dying.”
By asking people to share the stories of their loved one’s final months, Dr Andreas also hoped listeners would gain insights into what it’s like to be palliative in the East Kootenay community. The events allowed participants to step outside their official responsibilities and appraise the state of palliative care as someone whose own relatives might experience it, or who might experience it themselves one day.
The East Kootenay region contains a large retirement community and a relatively high incidence of people living with chronic disease, many of whom benefit from a palliative approach. In Dr Andreas’s view, palliative care should not focus on an individual’s imminent death, but on understanding who they are, where they’ve been, what they love, and their vision of their best life. Caregivers should ask what that person needs so they can continue to savour what they’ve got, right to the end.
final stories: listening, and learning
Before the events took place, project lead Shannon Girling-Hebert identified “physician champions” with a special interest in palliative care in six communities – two of which could not ultimately participate because of the pandemic – and asked them to find a local person willing to share a close relative’s final story. She invited those participants to write an account of that final period, and to read their story aloud at the start of an event. The palliative care community’s role was simply to listen not comment.
Of course, each story was unique. One described a patient who chose to palliate at home and to pass away there, supported in that goal by pharmacists, nurses, physicians, friends, and family. Another traced the route to a decision by a man with cancer to choose medical assistance in dying. A third story was less positive because the individual involved was never told that he was dying, and his family did not have the infrastructure or support to accommodate him at home. There was no integrated collaborative team for him, either.
Ms Girling-Hebert notes that the project was meant to bring people together, encircling the families of palliative patients, and recognizing families as part of the care team. When the latter story was told, she says, “I think the health care providers took away the fact that it was important to communicate with the family in the beginning, and not just when there’s a serious problem.”
Knowing what’s out there
Identifying and using all the services available is key to optimal palliative care. Before the Creston event, for example, many participants hadn’t known that local paramedics have special expertise to assist palliative patients at home.
One important initiative that emerged from the project was a collaborative team poster that lists every entity involved in palliative care in the East Kootenay Division, and describes what each one does. The posters will be distributed to doctors’ offices throughout the region.
The project is now complete. Dr Andreas hopes that for the three hours of each event, everybody in the room felt like a member of the Shared Care team. He and Ms Girling-Hebert believe that those who attended forged lasting bonds that result in more compassionate care.
“Perhaps the story ingredients we are all looking for at life’s end are empathy, vulnerability, and unconditional caring,” says Dr Andreas. “We ask people to connect, to become a character in someone else’s story – hopefully, for the better.”
Resources
Read the stories here: Dick's Story - Ken's Story - Rod's Story
contacts
For project information:
Shannon Girling-Herbert
250-427-5879.
Learn about the Palliative Care network here