“I can’t believe it, how can you still not have my results?” says my patient, looking defeated. His wife throws me an icy glance.
He has endured an unbearable wait for the results of the first scan after starting treatment. For oncologist and patient, this important event characterises the trajectory of illness and informs sensitive conversation, so he isn’t alone in his disappointment.
One of the hardest things for cancer patients is being forced to befriend uncertainty. When his appointment time is moved twice “so we can fit you in”, his fear mounts. When the clerk innocently asks if he has a local doctor, his heart thumps. And as I wheel him in and a nurse smiles, he is convinced that his life has come to an end. All this kindness must surely harbour a sinister cause.
Wiping his eyes, he outlines the hell of waiting. For two weeks, he has lost sleep and appetite and been enveloped in gloom, assuming that I was avoiding calling him because I knew he was dying. He called his doctor. The doctor said to call the hospital. The hospital said to wait for an appointment. His wife asked her friends for advice. They said she was lucky to have an appointment and to avoid being perceived as “demanding”.
I hate hearing these stories. They make me feel impotent. When I realised that his scan results were not available, my choices were to leave him stewing in the waiting room or bring him inside, and I thought the latter was kinder. I apologise and tell him that I will personally obtain them now.
Like many others, his file lies bare on My Health Record, the “one-stop shop” for Australian patients, so I call the radiology practice and am put on hold. I listen to “calming” music as he bites his nails. The receptionist demurs but finally puts me through to the radiologist, whom I know.
After a short conversation, I turn around and share the good news that the chemotherapy has produced a complete response. His wife cries. I am relieved, too. Another radiologist might have been less willing to relay the report. Or the news could have been bad, leaving me no time to compose my thoughts before facing the patient.
With his fears temporarily alleviated, the patient acknowledges my unenviable position and asks why it happened. By now I am running late, but I owe him an explanation.
I explain that the system is such that I don’t know ahead of time which patient has undergone what test at what location. Patients can attend any number of centres for investigations, expecting that the results go to the doctor. But results often don’t arrive at the right place or time, as I point to weeks-old mail meant for a doctor at a different hospital who shares my name.
My explanation sounds like “the dog ate my homework” excuse, but his eyes widen. He wonders why patient files cannot be prepared ahead of time. The usual explanation is an acute staff shortage, but if we lacked care coordination in the first place, the pandemic wasn’t going to improve things. Public hospital doctors dream of staffing a clinic where the list is orderly, and information up to date. I have lost count of the times I have called a “no show” patient only to learn that the patient has died. Worse, imagine being the poor relative who answers the call. If ever there was a way to cement the view that patients are “just a number”, this is it.
Observing that the greatest cost to the system is its people, my patient asks why hospitals are not “obsessive” about monitoring the division of labour. For instance, why are well-paid doctors chasing X-ray results when they could be seeing patients? And why do highly skilled nurses perform the work of orderlies?
After two years of interrupted care, doctors and nurses would love to perform the role that they are best suited to and paid for. This is a fantasy.
Take my patient’s scan result. A nurse could request it, but even if we were awash in nurses, their time is better spent with patients. Scarcely a day passes when a nurse doesn’t elicit a concern that the doctor failed to, which is why I would never ask a nurse to do “my” clerical work any more than I’d ask another doctor.
Clerical staff could do this clerical task if they were not busily checking in patients, answering calls and keeping an eye on distressed individuals.
But they face another barrier. Some providers will not release information without a doctor’s written request. The request must be written on a form and faxed. Yes, faxed. The faxed result, in turn, could take minutes or hours, depending on how the recipient defines “urgent”. Waiting for a fax typically involves diplomatic phone calls and apologising for the inconvenience when all the while it is the poor patient who bears the brunt of an anachronistic “system”.
In an era when we can guide a spaceship to Mars, why is it so difficult to get medical results into the right hands at the right time? Why can’t we serve patients in a way that is expedient and humane?
Maybe it has to do with too many managers managing a dwindling number of clinicians. Or muting the clinician’s voice under layers of hierarchy so that resistance feels useless.
The healthcare system is groaning under demand. But amid the enthusiasm for shiny buildings and clever machines, we must not forget the timeless elements of good healthcare.
Patients want to be triaged by need rather than income and influence. They want tests done and results conveyed in time. They want someone to understand the person behind the disease. In other words, they want the kind of healthcare that providers would want for themselves.
Good healthcare policy shouldn’t just sound good on paper, it must be accountable to the patient. It should boldly seek to mix the new with the old. Not everything about healthcare delivery needs to be reimagined. Some ideas are right there, waiting for us to act.
Ranjana Srivastava is an Australian oncologist, award-winning author and Fulbright scholar. Her latest book is called A Better Death
