This Time It's Personal: Stories underpin McGill congress

Storytelling and its impact threaded through the McGill International Congress on Palliative Care held in Montreal in mid-October. Two panels, one proffered paper, and a competition included IAHPC members whose contributions to the congress sharply reflected personal experiences.

The impact of conflict on care

Harvard Professor Hibah Osman, MD, is a cofounder of Balsam, a Lebanese palliative home care provider based in Beirut. Even before the current Israeli bomb attacks, the country was upended by a popular uprising, a banking collapse that saw people's life savings wiped out, a devastating blast at the port of Beirut, and Covid-19. The Balsam team was thoroughly demoralized. 

Osman responded by contacting palliative care experts, and set up a string of weekly meetings with the staff. "It was hugely uplifting," she reported. "It was educational, but also gave them a sense of connection, and validation that their work was worthy, worthy of these international superstars of palliative care."

Hong Kong Polytechnic University Research Assistant Professor Hammoda Abu-Odah, PhD, lived in Palestine before being hired away in 2022. He is struggling with the catastrophic impact of war in the Gaza strip on family, friends, and colleagues. His prolific research and news reports have made it clear that people in Gaza are in great need of psychosocial and physical support, not to mention integration of palliative care services within the health care system.

"Medical personnel are showing their dedication to care," he said. "A nurse I know went to the Gaza strip to help. He set up his tent near the hospital. Three weeks later, it was targeted and now he's in the ICU, and his daughter was killed." His recommendations go beyond strictly medical concerns: "ease the blockade to improve access to care. Enact training to conserve the dignity of the patient."

Sharing the burden of caring & mourning

The McGill congress devoted a daylong session to "The Role of Compassionate Communities in Grief and Bereavement," recognizing the positive impact of a supportive, holistic network of care for both patients and their loved ones.

IAHPC Board Member Natalie Greaves, PhD, one of 13 presenters throughout the day, spoke on understanding grief and resilience from a Barbados perspective.

"My contribution to the three-person panel addressed framing and navigating grief in minority, displaced, and diaspora populations, including understanding the significance and implications of preferred place of care, death, and burial discussions and decisions," she reported. Greaves highlighted "the complex issues that impact grief and resilience in small island developing states, such as needs in the midst of climate crisis-related environmental shocks."

Together, the panelists were able to:

• address issues related to grief and resilience in professional and nonprofessional caregivers, and
• outline examples of service-level approaches to fostering grief and resilience specifically in men and children.

"The panel concluded," she said, "by articulating methods to provide grief support, including respecting individuality, fostering respect for cultural differences, using holistic methods that value the connection between mind body and spirit, and helping clients to understand that that they are not alone."

A multifaceted tool to track progress in pediatric care

At the Innovation Challenge, IAHPC member Erin Das, who lives in Kenya, pitched the freely available Magnify Tool, designed to track and improve holistic pediatric palliative care anywhere in the world. 

Launched in September, the tool can be used to understand data on current care as well as to identify gaps in care, make future plans, and track progress of improvements. Touted as "designed by and for users," 60 contributors from more than 20 countries on six continents guided the process.

Das's personal story of her daughter who was born at only 23 weeks, and died shortly after, brought back the importance of how "it is necessary to measure and track our work even in tough situations."

'A dream come true' for Zambian nurse

Palliative care nurse and IAHPC LEAD grantee Mwate Joseph Chaila presented his paper on “Domestication and implementation of the PEN-Plus clinical model in the Zambian health system," a project that trains health care workers in essential skills in low- and middle-income countries. PEN-Plus is described as "an integrated care delivery strategy focused on alleviating the noncommunicable disease burden among the poorest children and young adults."

Chaila reported that 94 health care workers in Zambia from seven disciplines (including 46 nurses) have been trained in PEN-Plus, which includes palliative care basics. Participants are extending this knowledge by creating teams to further integrate palliative care in their facilities.

His conclusion is that "PEN-Plus can improve palliative care training and service provision, implemented throughout the continuum of care from diagnosis to bereavement." With the Ministry of Health supporting the project, Chaila adds, "Seeing that more health care workers are being trained, and the government and their cooperating partners are investing in palliative care development, is my dream come true."

Great Ideas from Innovation Challenge Finalists

Maybe one of the great ideas that Innovation Challenge finalists brought to the competition will spark a project for your care team. The Magnify Tool mentioned above is one; here are the others selected by the organizer, Canadian Virtual Hospice:

Reality Check, gives adolescents living with serious illness access to virtual reality gear that connects them with each other at a time when their usual activities—like attending school—are curtailed. 

The post office is a necessity for the Grief Library, which offers online resources and mails books on grief and bereavement to its rural users, who don't have easy access to these resources.

A play, Si un jour je meurs (If One Day I Die), provokes conversations about palliative care in households and among health care workers, as well as being used as a teaching tool.

The Palliative Story Exchange are story-sharing sessions for clinicians that was conceived during Covid-19 as a way to build community and decrease isolation.

A study revealed that "environmental care teams" (such as custodial staff) may foster relationships with patients that have a positive impact on their hospital stay. Key findings of the study were made into a film, being used as a teaching tool.

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