“I am so sorry to bother you, but I just don’t know who to turn to.”
I immediately recognise the voice of an old acquaintance. Having only ever known her as a calm, mellifluous voice, I am surprised. Her usually healthy husband has been diagnosed with cancer. Shifting between doctors for some time, they have been told to see an oncologist. How does one find an oncologist? Are private hospitals better than public?
What does all this mean?
He can feel the tumour masses growing by the day but still, they are in an information vacuum.
From the little I hear, I conclude that the man needs a haematologist, and he needs one fast. I tell her that the public hospital in their metaphorical back yard should be their first choice, any of his doctors can refer him and the hospital will do the rest.
If only it were so easy. The hospital won’t even entertain a call without a referral. The doctors are busy or unsure about the next steps. The family’s panic rises. If the sheer effort of access is so onerous, they ask, what lies ahead?
To counsel “it will all work out” seems disingenuous and to be a knowledgable bystander feels wrong, so I tell her to leave it to me. Between seeing patients, I call my “go-to” haematologist. We are friends in that woefully loose sense exacerbated by the pandemic. We “see” each other on Zoom but there is no mistaking the mutual trust which assures me that if I ask, he will help.
It’s Monday morning: of course, I am interrupting him. But he validates my concern, saying such diagnoses can’t wait for the paperwork to be filed. Triumphantly, I tell the family help is on the way, but their nerves (and mine) are jangled when a private practice archly wishes them “good luck going public”.
But the public hospital delivers. That week, the patient receives his first chemotherapy and watches his lumps shrink. The modest haematologist says he was only doing his job but we both know that his personal intervention rescued a stranger from harm.
Every week, I meet patients who place their faith in the public hospital system – as they should. Once they are in, the treatment is mostly excellent, but I am constantly surprised by the barriers to access. Unclear referral pathways, incomplete paperwork, misplaced files, administrative delays, and broken communication are common events – and while it’s popular to blame the pandemic for everything, this is not a new problem.
Hospital care has gradually turned piecemeal; now there is even more pressure on patients to help themselves. In this unhealthy mix, a touch of advocacy from a professional goes a long way.
Recently a patient with an acquired brain injury burst into tears at bad news. I wasn’t going to have him wait a month to find out the extent of his cancer, so I found a radiologist, waited 20 minutes, and explained the urgency. He got his test, but it got me thinking about the waiting others.
Years ago, a neighbour dropped in to see me on her way to the bank. Diagnosed with a suspicious mass, she felt let down by the public hospital, so crippled by anxiety, she contacted a private surgeon who offered an immediate opening. She thought she was “choosing life over money” but the exorbitant debt seemed wrong, so I called a colleague.
We discovered that the public hospital had rightly identified her case as urgent but somehow omitted to tell her. Her story ended happily for two reasons – her taxes paid for surgery and the mass was benign. Each anniversary, she sends me a grateful text.
The helping hand I extend to others is what most doctors do for their patients. It is impossible to witness need and reject the power to help. But in truth, for every patient who benefits from such personal advocacy, there are countless others left at the mercy of “the system”.
Here, I think especially of elderly people, those who are cognitively impaired, mentally ill, socially disadvantaged and those who don’t speak enough English to navigate complexity.
For the collective patient experience to improve, the system must adapt. Rising healthcare expenditure amid a host of pressing national priorities demands a rethink of how to best invest precious health dollars. We can keep lamenting the shortage of doctors and nurses or get on with the task of helping all patients, especially those not blessed by geography, means or connections.
After a serious diagnosis, people describe two urgent concerns: “What will happen to me?” and “How can I access help?”
The first is hard to predict, but in a healthcare system that touts its universality, the second question should have an easy answer. The patient and referring doctor should have access to a disease-specific care coordinator to advise the next steps.
The coordinator would collate information, know how to distinguish important from urgent and unwell from dying and retain human oversight over computerised processes so that by the time the patient sees a specialist, the groundwork has been done and time and resources are not wasted.
Importantly, the coordinator would be a reassuring voice for patients who routinely describe the waiting as worse than the knowing. Good medicine means more issuing the right prescription – it must care about the whole experience.
Like many parents, mine are proud of me. But as they age and their interactions with the hospital grow, their pride has been replaced by sheer relief that they have an advocate in these times. My standard response is that not everyone has a doctor in the family and the system will look after them just fine but in my heart of hearts, I know what they mean.
I have seen far too many missed opportunities and sentinel events that propel me to do better not just for my own parents, but also for all the patients who don’t have anyone to pick up the phone on their behalf.
• Ranjana Srivastava is an Australian oncologist, award-winning author and Fulbright scholar. Her latest book is called A Better Death