Do You Really have Nothing to Lose
Once again, the British are ahead of us. This brief report from The Guardian is about a newly released guide that helps people make informed decisions about cancer treatment choices. Intended primarily for people with advanced cancers, I suspect it will also be useful for those who are less ill.
The title, about having nothing to lose, relates to the common perception that any treatment is worth doing when one is facing death. For some people, that may be true. For others, if they were better informed, it might not be. In addition to physical side effects, there are possible questions about cost, burden on family, and the best (and the definition of "best" surely is individual) use of time.
Here is the article and then a link to read the guide:
Guide aims to help patients be wary of “miracle cures”
A new guide has been published to help patients make informed decisions when confronted with the plethora of treatments available on the internet.
The guide, I’ve Got Nothing to Lose by Trying It, written by patients’ groups, medical charities, and the UK charity Sense About Science, says that untested cures can give vulnerable patients false hope, expose them to financial hardship, and risk serious harm.1
Tracey Brown, managing director of Sense About Science, said, “If a claim about a treatment sounds too good to be true, it probably is. Families and friends can help loved ones to ask questions and avoid exploitation.”
Patients with chronic conditions such as cancer, multiple sclerosis, and motor neurone disease are often desperate for a cure and are particularly vulnerable to being sold false hopes through the internet, the media, and advertising.
The guide gives practical advice to help patients examine the available evidence so that they can weigh up claims and make informed decisions. It explains what to look for in a news story about a medical breakthrough, how clinical trials work, and what to look for on any website that promotes a new treatment. The guide also advises on participating in clinical trials and where to find trusted sources of medical information.
The guide was originally published in 2008 and has since been reprinted twice. This updated version includes stories from patients about the harms they were exposed to because of unfounded claims and treatments.
Ammar Al-Chalabi, professor of neurology and complex disease at King’s College London, said, “Many people with motor neurone disease seek out unproven treatments because of the very difficult situation they and their families are in. I see people who are desperate, spending tens of thousands of pounds on treatments that are definitely pointless, like stem cell therapy consisting of giving an unknown substance intravenously at an unlicensed clinic.”