“BUT what if it does actually work?” It’s a difficult question when a desperate patient wants to know about an unproven treatment.
Who am I to deny that there is always that possibility the treatment will work? Why am I, the doctor, wanting to extinguish hope, to prick the balloon, to crush the spirit?
Recently released NHMRC guidelines for medical practitioners on stem cell treatments outlines appropriate treatments that are available and the risks involved in undergoing unproven treatments. It states: “Clinics offering these treatments often raise hopes about the treatability of a disease or condition, where the safety and efficacy of the treatment has not been established.”
Those diseases and conditions include multiple sclerosis (MS), spinal cord injury, osteoarthritis, rheumatoid arthritis, heart disease, autoimmune diseases, cerebral palsy and autism. Some stem cell clinics offer these unproven treatments directly to consumers, often promoted on the internet.
So, what’s the problem? Hope can, of course, be a positive force — but not always.
What happens when hope is counterproductive — when patients are offered false hope?
When I first met Paul, he was a man in his early 20s with big ideas. A carpenter by trade, confident by nature, he had an easy manner and a winning grin. An Aussie bloke.
Now, 20 years later, he is trying to get his life back.
He had noticed since his early teens that he struggled with strength in his torso and upper legs. His workmates teased him that he climbed a ladder like a penguin.
With time, his gait lost its swagger and became a waddle. It was the abnormal gait and the way he climbed out of his chair that led to a penny dropping in my head, a neurologist review, a geneticist review, and eventually a diagnosis.
Pompe disease — a rare familial degenerative muscular disorder, caused by a defect in glycogen storage, likely related to Paul’s German heritage. Paul can no longer work and struggles to get into my consultation room unaided. There is no known cure, and he is heading for a wheelchair in 5 years, a ventilator in 10–20 years.
A recently developed enzyme-based treatment could potentially slow the disease’s progress, but Paul is not young enough and his condition not considered severe enough in the eyes of the Department of Health’s Life Saving Drug Program to justify the astronomical cost of the drug.
His daughter will soon become his carer, and if he has grandchildren he will never be able to pick them up.
When Paul asked me about an unproven treatment it occurred to me that if I was not medically trained and had been thrown into his circumstances, which voice would I listen to? The one I had always trusted and supported by all those specialists but that seemed to offer little hope?
Or would it be the other voice, the whisper in the ear that maybe there was another way, that the experts were all wrong and that where was hope, there was a cure? All I had to do was to hand over my rationality, my faith, my belief.
It is little wonder that patients like Paul will run to false hope. It may be the only thing that sustains them. Without hope, there can be nothing.
False hope lurks in our patients’ peripheral vision, preying on the vulnerable like a dealer on a street corner. Be it MS, cancer, autism in a child, or a myriad other desperate circumstances, these are the people ripe for plucking by the peddlers of false hope. Their promises may be inappropriate use of mainstream therapies such as stem cells, chelation or hyperbaric oxygen, or may be entirely nonsensical in a scientific sense, such as magical diets, enemas, magnets and potions.
They can damage patients by diverting them from potentially beneficial (but not as hopeful) treatments, or cause side effects and complications with no likely benefit and, worst of all, drain precious financial and emotional resources.
When dealing with patients in desperate circumstances, we should be aware of the threat of false hope. It can be like watching a car crash when a patient realises, too late, they have been duped.
A patient’s flirtation with such hazardous approaches, just like the drug dealer, may be transient. By offering non-judgemental support, we can continue to offer them a path away from such dangers. Hopefully with time they will choose to take that path.
Of course, it seems easy when it’s not your name on the pathology result. And who knows what lurks around the corner for any of us — a case of “there but for the grace of God go I”.
Dr James Best is a GP practising in Sydney and is a former winner of the Royal Australian College of General Practitioner General Practice Supervisor of the Year Award.
Paul is loosely based on a real patient who has given permission regarding publication of this article.