What I wish I’d known before entering the medical system

In Dr Neela Janakiramanan’s new thriller, The Registrar, there is a patient who reminds me of myself. Jacqui has myriad questions and has spent months waiting for answers. Any semblance of calm has exited her body long ago and she is desperate.

Her doctor, Emma, the novel’s protagonist, wonders whether she should give Jacqui her mobile number so she can be more help. It’s an act of unregulated kindness, rare in a hospital that relies on systems, procedures and rules to function. When Emma’s phone rings relentlessly all night, she wonders how she can do her job and live up to her ideals at the same time.

Dr Janakiramanan says medicine should be a partnership between patients and doctors.Credit: iStock

I’ve spent my fair share of time in hospitals. Nights alone and lonely, in a narrow bed, trying to get comfortable on a thin mattress and under even thinner sheets. In hospital, everything feels heightened: a twinge in your canula, a pain down your side, pressure on your chest. A moment of confusion and the panic sets in.

Despite a terrible run of luck with my health, I’ve had mostly very good fortune with the physicians who have treated me. They’ve been courteous, kind and, most importantly, highly skilled and knowledgeable. I need both hands to count those who, like the fictional Emma, generously provided me with their mobile numbers.

Feeling a kinship with Dr Janakiramanan’s characters, I ask her what patients can do to help the medical profession balance emotional support with the pressures of their jobs. She tells me that we should, if possible, share our experiences of treatment and life beyond treatment, both good and bad. “We have very clinical endpoints,” she says of her fellow physicians. “How much tumour is left? How much pain do you have? What is the range of motion of this joint?”

I let my brain skim back over the nearly five years that I have spent as a professional sick person. My consistent challenge has been in communicating the interwoven nature of my morbidities and disabilities. Each doctor on their own is excellent, but it’s only when the full scope of my problems is taken together that a true picture of my health – and quality of life – emerges.

“Doctors should understand how the deficiencies of the health system – the fragmentation, lost communication, inability to get and keep their own results, how hard it can be to find the right person for your problem – impact their patients,” she says.

I ponder lost communication. When it comes to interacting with medical professionals, I am in a good position. English is my first language, I am tertiary educated, I work with words and I have private health insurance. Despite all this, I had little to no idea how my life would change after surgery.

Perhaps I didn’t ask enough questions. Perhaps I didn’t know what questions to ask. Perhaps I was too scared of surgery itself to see beyond the procedure to my life afterwards. But, most likely, it was because doctors barely have time to focus on the medical outcome, leaving little space for the human one.

“Medicine isn’t limited to the physiology of blood-sugar readings or tumour cells or anything else. It’s about how people live.”

Most human beings, faced with a life-threatening moment that requires medical intervention, would take the skilled, experienced surgeon over the friendly, explanatory one. But this isn’t about individual doctors or patients. This is about our medical system as a whole and the outcomes that get valued.

“Social issues are medical issues,” says Janakiramanan. “Medicine isn’t limited to the physiology of blood-sugar readings or tumour cells or anything else. It’s about how people live, the limitations and constraints on their lives, and how they do or don’t respond to them.”

Last night, her words echoed in my head as I lined up the tablets and injections to take before bed. I propped my feet on a pillow to manage the fluid build-up, and reminded myself to drink water because thirst isn’t something my brain registers any more. I lay there, planning another day of appointments and blood tests and chemist visits before I fell asleep.

Life looks different for me now, and none of my medical team could have avoided that. But I wonder if I could have been better prepared. Perhaps by an advocate who could have guided me through an unfamiliar system. Someone who could have explained that surgical outcomes are never simple, and that this day might have an everlasting impact on my life, my marriage, my child, my relationships, my work, and my happiness.

Dr Janakiramanan says medicine should be a partnership between patients and doctors. But this is only possible in a system that is designed – and funded – to make it so.

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