The vulnerable patient left to join the dots

Siloed, stretched and still waiting: The vulnerable patient left to join the dots

There is a particular sound a hospital makes at night.

The soft hum of equipment. The wheels of a trolley moving down a corridor. Doors opening and closing. Footsteps approaching, then disappearing. Voices behind curtains, deliberately lowered.

And somewhere in the middle of it all is a patient waiting.

My father has been in Hornsby Hospital for almost two weeks.

He has metastatic cancer, complicated by a cascade of interrelated issues that have left him profoundly frail. His journey to this point has been difficult enough to warrant its own story: a missed disease progression, months of delay in moving to a treatment pathway that may have offered him a different chance, and now a body too depleted to tolerate some of the options that might once have been possible.

But what has struck me most during these past two weeks is not simply the complexity of his illness. It is the overwhelming complexity of navigating the health system around it.

His care now spans urology, medical oncology, colorectal surgery, respiratory, nephrology, infectious diseases, and supportive care.

Seven specialties. Seven clinical perspectives. And somewhere in the middle of all of this is one very sick man and a family on high alert.

I have spent more than 25 years working in healthcare. I understand the language. I understand clinical hierarchies. I know when to ask another question, when an answer doesn’t quite make sense, and when I need to escalate an issue.

And even with that knowledge, I have found myself struggling to navigate the maze.

That leaves me with a question I cannot shake: How is a family without healthcare experience supposed to do this?

There have been moments of extraordinary humanity.

The urology consultant delivered the most difficult news imaginable to my father and our family. She didn’t rush. She held my father’s hand.

And my father cried.

It is the only time I have seen him cry in front of people outside our family.

That moment has stayed with me because it demonstrated something that can disappear beneath the machinery of modern healthcare. Sometimes the most important clinical intervention is simply being fully present with another human being.

There is also a urology registrar who has become something of a lifeline for us, connecting dots, answering questions, chasing information and trying to understand what needs to happen next across seven specialties.

These individuals matter enormously.

But that is also where the contradictions become stark. Because compassion should not depend on which clinician happens to walk through the door.

Yesterday, a nephrology consultant came to review my father. I asked questions. There was little eye contact, no meaningful introduction, and an apparent urgency to leave before the conversation had really begun.

More troublingly, the nephrostomy bags were not checked. One of them had been blocked for hours.

I only became aware that something was wrong because the answers I was receiving from the nursing team weren’t resolving my concerns. I asked for a doctor to be paged. There was no clear indication of when that would happen. Eventually, I escalated the issue to the urology registrar.

The problem was addressed.

But I couldn’t help thinking about the registrar standing beside the nephrology consultant earlier.

What are we teaching the next generation of doctors about what it means to care for a patient?

That efficiency is measured by how quickly you can leave the bedside? That answering questions from the family and the patient is a luxury? Or that compassion is somehow an optional extra, reserved for clinicians who have the time?

Because the lesson a junior clinician learns isn’t only found in textbooks. It is found in watching their seniors.

The nurses have their own story to tell.

One nurse told me they were 42 nurses short in the hospital.

Forty-two.

The result? Patients remain in the emergency department (ED). The ED becomes congested. The hospital appears to have beds, but functionally those beds don’t exist.

And so the spiral continues, while we debate medical training numbers and whether the specialty colleges are admitting enough graduates.

But if governments don’t fund enough training positions in hospitals, where exactly are those additional graduates supposed to go?

The most difficult part for families, however, is often what happens between the formal moments of care.

Doctors come on rounds. They review the patient. They make decisions. They leave. And then the patient and family are left behind.

A concern emerges at 2pm. A nurse listens. But often the nurse cannot act without a clinician’s charted instructions.

So the nurse waits for the doctor. The family waits for the doctor. The patient waits. There is no clear ETA. And everyone is waiting for someone else to arrive.

For a patient who is already vulnerable, that waiting is frightening. It can also be dangerous.

And eventually, the burden of coordination quietly migrates from the healthcare system onto the patient and their family.

Perhaps that is the part of this experience that has unsettled me most.

I have spent decades in healthcare. I know how to advocate. I know the difference between being politely persistent and being dismissed. I know how to escalate. I know who to ask. I know that when something doesn’t feel right, sometimes you have to keep pushing.

But what about the family who doesn’t know any of this?

We have built a healthcare system of extraordinary clinical expertise. But expertise divided into silos is fragmentation.

Someone has to connect the dots and keep the whole story in their head. In my father’s case, that someone has often been me. But it shouldn’t have to be.

We talk constantly about patient-centred care. Perhaps we should ask ourselves what that actually means.

Because from where my father is lying, patient-centred care isn’t a slogan.

It is whether a clinician introduces themselves and makes eye contact. Whether a question is treated as an interruption or as useful clinical information. Whether someone checks the equipment attached to a patient rather than simply reading the notes. Whether someone explains what happens next. Whether the family knows who is responsible. Whether a concern raised at 2pm is still sitting unresolved at 8pm.

My father is very sick. But even when medicines and surgical interventions cannot cure, healthcare can still care optimally and with urgency.

It can provide dignity. It can provide clarity. It can provide continuity. It can make a frightening experience less frightening.

A healthcare system should be redesigned so that the person who knows the least about navigating it is still protected by it.

That is not an unreasonable expectation. It is the very least we should ask of a system built to care for us when we are at our most vulnerable.

Warm regards,

Rozalina Sarkezians.

Managing Director & Editor-in-Chief, Health Industry Hub