How much money would you give to save the life of a terminally ill patient? It turns out a lot – enough to restore one’s faith in humanity that, even in this crazy world, we can stop to care for the plight of a stranger. But are you entitled to know how your money is spent?

My patient was a foreign student when he became ill with a cancer whose size and virulence defied imagination. No number of expensive tests would change the first surgeon’s conclusion that it was inoperable. But this news seemed so unthinkable that we obtained multiple opinions to confirm that surgery would be futile and dangerous.

My team and I tirelessly sorted out the tiniest details, including finding someone from the patient’s community to sit with him. The bottom line was brutally apparent – a young man lay dying without home or family to speak of. The hospital would be his home and the staff his family. What I failed to consider was that professionals knew how to process such tragedy, but an informal advocate was in over his head – soon he was sowing seeds of doubt in the patient’s mind that his condition might not be terminal.

The advocate who wanted to do good started a crowdfunding appeal. It featured a picture of my pallid patient attached to an IV with a heartrending plea urging generous donations now that his oncologist had given up. Money poured in. I was puzzled. What was the money for? I had never mentioned cost and in fact had sought assurances that the blow of his diagnosis would not be compounded by an unaffordable debt.

But my discomfort felt uncharitable – who was I to know the exigencies of having terminal cancer? So, I kept focusing on caring for my deteriorating patient – and it wasn’t until a businessman discretely enquired if the funds were sufficient for my needs that the truth dawned on me. I was at once mortified and livid.

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“You know that my care is entirely free?” I blurted.

“No, I didn’t”, he replied politely.

The patient’s family flew in and the public hospital fed and sheltered them whenever it could. But long after his death, I was dogged by questions about the crowdfunding. Who spent the money and on what? Who inherited the rest? If the money was raised in the name of cancer treatment, shouldn’t the generous public hospital be repaid? And finally, didn’t donors deserve to know the truth?

It’s possible that a crowdfunding appeal to help a grieving family reunite with their terminally ill son would have elicited the same response but the promise of contributing to a cure for cancer had been far more poignant. People who don’t ordinarily give to charity open their wallet for cancer because there’s something about this illness that moves us like no other.

Many of my misgivings about crowdfunding for cancer treatment returned when an ugly social media exchange recently ensued in Australia over a prominent neurosurgeon being asked by an academic hospital surgeon to explain why cancer patients were turning to crowdfunding to afford the large fees for his operations. The operations occur in the private hospital system and are typically those that other surgeons have declined to perform, deeming the risks to outweigh the benefits.

The academic hospital surgeon suggested that Australia has a generous and responsive public health system. Therefore, when people felt obliged to raise huge sums of money to access private sector treatment they deserved to know that the treatment was evidence-based and, in turn, why it was not offered in the public sector, which strives to keep up with the world’s best medicine.

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Brain tumours have a dismal prognosis and it’s no wonder that hapless patients will turn to anyone and anything for a grain of hope, so a call for transparency and an invitation to reasoned debate seemed sensible. Alas, it unleashed a vitriolic outcry from those who turned on the questioner. The academic hospital surgeon was trolled, and an elected councillor saw fit to publish the surgeon’s details.

The neurosurgeon explained that he retained a mere $8,000 of the $120,000 crowdsourced by one desperate family, with the majority swallowed up by the private hospital business. This itself would be worth exploring but it was his dim view of the medical profession that provided the real flashpoint. He postulated that it was the politics of envy that prevented other neurosurgeons learning from him. Defending himself as the best neurosurgeon he knew, he accused the public hospital system of deliberately sidelining him so as not to make other surgeons “look bad”.

Professional bodies tiptoed in, not openly critical of anyone, but warning against crowdfunding – “those who think that they will get a better service by paying a greater fee are misguided and misled”, a view challenged by the neurosurgeon, who thinks that reputable doctors should be able to charge what the market will bear. Predictably, this unleashed another stormy exchange. Altogether, it was an unedifying spectacle that stole the headlines for the wrong reasons.

This sordid saga should give us pause for thought because it marks the primacy of opinion and invective over reason and transparency, something the medical profession has worked hard to avoid. Anecdotes are not facts. Fervent hope is not evidence. Patient care is rarely well-served by lionising individuals over good institutions.

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Doctors make some egregious mistakes, but it is still rare to encounter an intervention with proven benefit to quality or quantity of life that the entire profession outright denies its patients. Where cost is a barrier, we work doubly hard to arrive at cheaper solutions. Where expertise is lacking, we challenge ourselves to learn. Robust and sometimes bruising competition is a hallmark of medicine (cautious uptake of risky interventions is another) but inaction due to sheer envy is not. Where there are lives to improve, highly qualified, ambitious doctors don’t tend to be passive.

How are all cancer patients best served by the public health system? Do doctors have a duty of care to our entire society or just to patients who can afford them? Who safeguards integrity and ethics in medicine?

To think that only doctors could have these answers is to diminish the intelligence of patients. For patients to condemn those who ask these questions is to deny reasoned debate. This is no time for doctors and patients to be on opposite sides. Working together may not cure cancer but it will certainly help demystify and democratise a healthcare system that Australians are rightly very proud of.

Ranjana Srivastava is an Australian oncologist, award-winning author and Fulbright scholar. Her latest book is called A Better Death



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