KATHMANDU: Medical professionals often talk about healing. But what happens when the very system built to heal ends up causing harm—through silence, arrogance, or unchecked ego?
I am a Registered Nurse with more than 25 years of experience across paediatric ICU, CCU, international medivac, and remote area nursing in Australia. Yet despite my training, I was not immune to an unforgivable transgression. My son Sam suffered needlessly—and permanently—because of communication failures in our healthcare system.
The Core Problem No One Wants to Address
A significant contributor to adverse medical outcomes, permanent disability, and death, is poor or absent medical communications.
This is no secret, and left to continue, will only result in more deaths and increasing febrile tensions between doctors and families.
A Model Born of Tragedy
Sam’s framework directly addresses the barriers to communication including absence of training/education, profit-driven systems lacking in humanity, silent power struggles, unchecked egos, and a low priority on building essential trust and rapport.
Principally written for critical and long-term paediatric care, its fundamental can be flexed to other areas of healthcare while factoring in time constraints, systemic flaws, cultural expectations, and lack of training.
Driven from my own devastating personal experience at a major children’s hospital in Australia, I have dedicated this world-first model in Sam’s name—and I’m introducing it across the sector in Nepal.
Although the West may have more resources, the reality is, that the carefully managed impression of putting the patients and families first is, in many cases, a deeply flawed façade.
I’ve spent two years visiting Nepal and am impressed with the energy and openness to discuss this critical issue of communications and improve the quality of care.
This Is What Happened to My Son
Sharing my story is indescribably painful, but I feel silence is what causes more personal turmoil long term.
On any given day in any medical facility across the world, there are preventable and devastating fallouts from a lack of communication and trust between doctors and families.
For us, it was no different.
Following a discovery of my son’s brain tumour, we arrived at the major children’s hospital in Brisbane, Australia. This hospital recently opened before it was ready due to pressure with an upcoming State Election.
When we entered, the neuro registrar was excellent—he was respectful and a clear communicator.
As we viewed the scans, he explained the urgency for Sam to have a shunt inserted which would relieve the pressure on his brain. He wrote in the notes and stated that this procedure was an emergency.
By morning, still waiting for the neurosurgeon, Sam’s headaches were increasing and his eyesight deteriorating.
Eventually the neurosurgeon arrived, looking and acting distinctly irritated. He did not address, look at or examine my son.
He refused to operate and insert the lifesaving shunt because “I’m not paid to work the weekend and only strange people work weekends.” With that, he left.
My son deteriorated rapidly without the shunt to divert the pressure from his brain.
I immediately insisted another neurosurgeon take over Sam’s care.
A few days later, despite dangerously high intracranial pressure (ICP), Sam’s brain was operated on—a biopsy taken, but no shunt inserted. And the surgeon was not replaced with another.
Despite urgently raising my concerns with many senior staff, my son was discharged. By that stage, he could not walk and could barely see.
With my GP, I kept Sam stable at home until we returned to the hospital for the biopsy results two weeks later. All trust in the health system had dissipated… and critically, it never returned.
As soon as the oncologist saw him, he ordered a shunt to be inserted. Finally.
After the shunt was in place and the fluid around the brain tumour diverted, our son could see and walk again—but was left with permanent deficit because of the delay.
This he had to live with, as he endured brutal and unrelenting brain cancer treatment for the next three years.
What Happened After Was Even Worse
Of extremely high concern is that government bodies created in theory to protect the standards of care only worked to protect the industry in my case.
For five years I then pursued the State Health Ombudsman, Australian Registration Board, the watchdog for the Australian Registration Board and the hospital itself.
Despite 25 years of nursing experience, being highly articulate, and in possession of the irrefutable medical notes and evidence—I was led down a path to nowhere.
I experienced what I had long known to a lesser extent; that vast egos protect a multi-billion-dollar medical industry, veiled under a glossy, impenetrable, and carefully curated exterior.
After insisting on viewing the full report that a separate neurosurgeon commissioned to review Sam’s case, I received the 12-page document—and the majority of it was redacted.
It was at this point, one of Australia’s leading investigative journalists ran an extended story on what happened to Sam on the highest-rating news channel in the country.
Within a couple of years, due to media pressure and other devastating cases also covered by media, this major children’s hospital changed its name.
Our story, along with others, was strategically removed from the internet.
Never underestimate the power and determination of a grieving mother.
A Framework Built on Humanity
The development of Sam’s Medical Communications Model heralds a significant and much-needed cultural shift in the medical industry the world over.
Anchored in humanity, this model elevates from patient-centric models currently being used, to a highly collaborative framework.
This promotes the much-needed synergy of medical expertise, combined with the soul knowledge of a child only a parent possesses. This allows for parents to advocate and for a vital and sometimes lifesaving exchange of information to take place.
As part of this shift, it is critical that wider disciplinary teams and relevant doctors pause and examine their own manner and preconditioned perspectives.
One of the biggest counterforces limiting humility and collaboration is… ego.
Author of Ego Is the Enemy, Ryan Holiday, argues that “ego fosters a focus on self-image and external validation, rather than the genuine purpose of our actions. This can result in actions that are driven by a desire to appear helpful or to receive praise, rather than a sincere desire to support or assist.”
In addition, it is critical for unity and collaboration that patients and their families also self-reflect and articulate their concerns, advocating in a non-violent, but firm respectful manner.
It is a misconception that we don’t “have time” for communications, as it is fundamental to life.
Three minutes with a parent can either decimate or empower… but it is the same three minutes.
This framework mitigates misunderstandings and fosters a fully empathetic and cohesive approach to care.
In addition, it fosters increased satisfaction for doctors, as their care is fortified on a deeper level.
I know from my own career; you can feel a puppet to a heavily inefficient and broken system drowning in its own bureaucracy.
Fostering unity and not division is the only way to reach a level and quality of care which is unsurpassed.
Nepal’s Openness Is a Light of Hope
From discussions with many senior specialists within the medical industry in Nepal, I believe this country can lead across the global medical sector if it chooses to do so.
No shift in ingrained culture happens overnight, but it must start and will require incredible consistency, commitment, and unrelenting determination to lead the charge.
The fundamentals of this model remain constant and can be flexed easily to various situations/cultures because of these key pillars: empowerment of the vulnerable, formal inclusion into the team and choice to do so, accountability, humanity, and respect.
(Jennifer Donohoe is an Australian Registered Nurse and Medical Communications Specialist).
