“It’s
terminal! Go home and put your affairs in order.” By definition, a terminal illness is a
disease that cannot be cured or adequately treated and that is reasonably
expected to result in the death of the patient within a short period of time
Is any
diagnosis really terminal anymore?
Medical
advances are occurring every day, clinical trials are contributing to our knowledge
of what works/doesn’t work and patients around the world are sharing
information in online communities. Is it
feasible to think that our doctors are on top of all this information for every
illness in order to accurately declare that an illness cannot be cured or adequately treated? Maybe we need to redefine the word or, better
yet, get rid of it entirely.
This is not
to put false hope in the heads of patients exhausted by attempts at ineffective
treatments whose quality of life has deteriorated while fighting an illness. Those patients may very well accept that everything
has been done, and accept that their illness will take their life in a
reasonably short period of time. But,
what about patients like Sam (not his real name), a middle aged man I came to
know last week. Not too long ago Sam was
going about his normal routine, working, enjoying the summer, feeling fine but
he started falling asleep at his desk, and it happened more than once. A trip to his doctor and an MRI later showed
he had brain cancer. The prognosis was
grim, chemotherapy and radiation were offered to buy him a few months. He was told it was terminal and he should
‘get his affairs in order’.
About the
same time, on the other side of the
Atlantic ocean, thirty-nine year old Salvatore Iaconesi was given a similar brain
cancer diagnosis but he decided to crowd source his opportunities. He cracked the codes to his clinical records
on September 10th and posted them online inviting the world to
respond to his CT scans, MRIs, lab notes and glioma diagnosis in whatever way
they want. Salvatore also spoke at TEDx in
Rome The
Cure where he explained how he took
the hundreds of thousands of responses to build his personal strategy to combat
his brain cancer. The responses are all
stored on his website for anyone to access.
His most recent posting indicated that he will soon be undergoing
surgery, the first step in his strategy.
This
personalized approach to a treatment strategy makes so much sense but it takes
time to identify all the options, balance the pros and cons, and make an
informed decision. Perhaps instead of
advising people to ‘get their affairs in order’, doctors should give patients their
data and simply acknowledge that they cannot cure or treat your illness and
without effective treatment your illness will kill you in the near future. With your data in hand, it is up to you what
to do next.
In the same
way that we donate our bodies to science why don’t we publish our rare
diagnosis and clinical data online to share with a community of people looking
for the same answers? Facing a terminal diagnosis, I would do all I could to
save myself but if that were not possible I would want the evidence of my
efforts and outcomes recorded so that others could learn and benefit.
It’s your
health. It’s your health
information. Manage it well.
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