Few doctors could have read about Bronte Doyne and not thought: "There but for the grace of God go I."
Doyne was 19 when she succumbed to an extremely rare form of liver cancer whose recurrence went undiagnosed because doctors, specialists and GPs at Nottingham University Hospitals Trust failed to listen or believe her complaints. Her increasingly urgent pleas for help were met with an admonishment to "
stop Googling" her symptoms.
Her messages, made public last week by her courageous mother, are heartbreaking in their innocence and despair. Less than a month before she died she wrote of a consultant. "He said it's inoperable at the moment. Don't really know what that means." Close to the end she wrote, "Can't begin to tell you how it feels to have to tell an oncologist they are wrong. I had to, I'm fed up of trusting them."
The recurrence of a rare cancer was always going to be bad news, whatever the timing of its discovery. But to highlight this in Doyne's case misses the point that early diagnosis would have enabled the teenager to access the pain management that she was denied, expert cancer care that she deserved and hospice care that was too little too late. Doyne's mother has spoken of the "woeful lack of care and empathy" shown her daughter- measured words for a damning indictment of the second-class way in which the medical profession treats many patients.
Although her extreme example does not sully the work of countless diligent doctors, in the NHS and elsewhere, I can't help thinking that every cancer specialist has a Bronte Doyne of sorts.
Mine was in her 40s, having just finished chemotherapy after successful surgery. At her six-week review she felt breathless but a scan excluded a pulmonary embolism or cancer. Some weeks later her sternum didn't feel right but a bone scan was clear. I chastised myself for being the over-investigating oncologist I didn't want to be.
One day through mascara-streaked tears and tugging at her purple-dyed hair she told me about the split with her husband and her general difficulty in readjusting to life after cancer. Then she gave me an out. "I think I'm just anxious." I seized gratefully on it, wrote a script for Lorazepam, and told her that these were still early days.
All I could offer was a shared sense that the symptoms that nagged her also nagged at me. "Come back early," I urged after every uneventful review, "so I can keep an eye on you." When it turned out that her gut instinct about her cancer was right all along, this offer would turn out to be my saving grace.
She did come back soon with a "pimple" on her chest. More nodules grew before my eyes and then the cancer was everywhere. Just months later my "cured but anxious" patient lay dying, unfathomably gracious towards me till the end. Her loss triggered a lot of soul-searching on my part. That the biology of her cancer was unforgiving and that tests had failed her was evident but I have never stopped wondering if I could have done more to spare her the torment of thinking, even for a while, that she was merely going crazy.
The modern cancer patient has typically Googled the diagnosis, the oncologist, prospective treatment and a whole lot more before setting foot in the office. This can mean that serious, life-changing issues compete with the frankly nonsensical.
Last week, between cajoling a patient to enter a hospice and treating a homeless man I heard a discourse on Mexican garlic, another on healing spinach juice and a patient demanded scans recommended by a popular blog.
I resent Dr Google being the silent spoiler in my life but only until I recognise how the internet has allowed patients to seek counsel that would have been unthinkable in another era, and access to often high-quality information written with the patient in mind. My last few patients have probably learned more about clinical trials from the internet than from me.
But look up "best treatment for cancer" and you have an astonishing 300 million offerings. Right there with rigorous, evidence-based sites there are those offering fermented foods and DIY cancer cure kits. Doyne consulted a reputable site but worried patients need help to distinguish between sensible advice and fanciful claims.
Mostly, what medics must accept is that searching for more information is a natural instinct, not a slight against one's doctor. The profession will have to get better at educating the next generation of doctors now that Dr Google is here to stay and, I think, to help. The greatest challenge of modern medicine is not to figure out the next blockbuster therapy for an uncommon disease but how to listen to the neediest of our patients and stay with them on the often long and lonely path of their illness.
The internet will never replace the profound human dimension of the doctor-patient relationship. Those predicting the end of medicine as we know it, with sophisticated computers able to filter information better and faster than the hapless doctor who can barely keep up with a couple of journals, lack insight into the pathos of suffering, the vulnerability and the irreplaceable need for a compassionate voice.
This is what you will find on any cancer ward amid the chaos and uncertainty - gestures of humanity from doctors, nurses, pharmacists, social workers and any number of allied health professionals. A hand held here, a tear wiped there. A wound dressed, a chaplain called. French fries, the occasional smuggled beer, a warm shower and a foot massage. Most of it goes unremarked but every day we meditate on the drama of life and death, pray silently and strive to recognise that the suffering we witness is physical and existential. Of course, we get it wrong, horribly so, in the case of poor Bronte Doyne whose treatment shames doctors as much as it outrages patients. But many times we get it right. Perhaps even more importantly, we worry about getting it right.
In the 4th century BC Hippocrates provided doctors with a prescription for good medicine. "May you cure sometimes, treat often, comfort always." The saddest thing about Bronte Doyne is that, unable to do the first two, her doctors abjectly failed her in the last. Speaking from experience, this is the failure that will haunt them the most.