KATHMANDU, FEBRUARY 7
Enduring the death of her 12-year-old son, Sam, from brain cancer in 2018, Australian mother Jennifer Donohoe has chosen Nepal this month to announce her communications model of care for Paediatric Oncology teams globally.
Jennifer's son suffered catastrophic ramifications because of little or no communication between teams and with the family. This proved a powerful catalyst to tackle the issue head on as a global initiative.
Jennifer is highly experienced, having spent three years caring for her son 24/7 throughout this torturous illness. She is a registered nurse with 25 years' experience, including Paediatric Oncology, Emergency and being a qualified communications specialist.
"There's no room for error at a critical diagnosis - communication issues can result in devastating outcomes, alienating families from medical teams. It requires putting egos aside, calmness, empathy and openness, so families, doctors, nurses and allied health professionals can unify to work together for the child. We cannot control a fatal prognosis. However, with improved communication models, we can better manage the impact of the prognosis and subsequent quality of life of a child," she said.
"As many parents who share this life shattering experience attest, the delivery of a poor prognosis is a pivotal moment that is frozen in time."
What happens at this crucial point in delivering a prognosis heavily dictates what follows. The consequences of poor communication between medical teams and families can be life threatening to the child and their parents.
Jennifer states that any current form of modelling is anchored in academia, with no vital parental input or representation.
"Because of colossal lapses in medical communications, we lost all trust in the very system on which, at the same time, we also critically depended, and there was no comeback afterward," she said. In addition to this framework, Jennifer is encouraging media and communities to enhance their perspective and response to children with a life limiting diagnosis and grieving parents.
"Good but uninformed intentions can misfire deeply, with pity and marginalisation adding another layer of irreversible trauma for families. A terminal diagnosis does not give permission to write children off, destroy their hope or judge families. None of us knows the hour of our deaths. These children want to focus on life. For a child to face a fatal prognosis and yet still drag themselves up to hospitals for relentless, aggressive, and emotionally depleting treatment so they can love their families one more minute surpasses any other achievement on this earth. This is the power of love. To glean from these children's wisdom of life is a rare and tremendous honour for others in society," she said and added.
"These children want as normal a life as possible and to maintain their sense of identity, respect and connection to the community - this is the path to their empowerment and the quality of their lives."
Jennifer has spoken at national and state conferences in Australia. She has chosen Nepal to launch this initiative, as Sam's first goal for his future was to trek the Annapurna Circuit. However, the universe struck with its savage indifference, and young Sam died before he could fly to Nepal. Jennifer is in Kathmandu from February 12 until April 14, 2024.
