By: Barrie Quappé RN, BSN – Consultant/Director:
Every now and then we all stumble on information that frankly all health professionals should have. Clinical research findings or individual stories of medical practice when it goes right or wrong are not communicated consistently or globally, well enough and patients go undiagnosed due to these gaps in communication of medical advances.
Some organizations are beginning to address this, like the new Miami Cancer Institute. That institute has set up collaborative relationships with the Memorial Sloan Kettering Cancer Alliance which they describe as:
“…a dynamic and forward-thinking collaboration aimed at improving patient access to the latest and most effective cancer treatment advances and the highest caliber of cancer care.”
I recently went to Books and Books in Camana Bay and a dear theatre friend who works there asked me what type of reading I enjoy. I responded, “medical mysteries” and she immediately recommended “Brain of Fire: my Month of Madness” by Susanna Cahalan, a journalist for the New York Post. This is a must read for neurologists, mental health care givers and every other healthcare professional as well as for families who may have to support an affected loved one. There was a preceding article in the New York Post that gives us this highlight:
“Najjar estimates that nearly 90 percent of those suffering from autoimmune encephalitis go undiagnosed. It’s a death sentence when you’re still alive,” Najjar told me. “Many are wasting away in a psych ward or a nursing home. I was the first person in NYU Medical Center’s history to be diagnosed with NMDAR encephalitis.” – http://nypost.com/2009/10/04/my-mysterious-lost-month-of-madness/
This book also has all the medical information referenced, so it has an add-on as a medical resource. Take for example the use of a mid-1950s diagnostic tool after all the labs and spinal taps could not provide the needed clues. Note a review by Janus Kremer found that:
“Conclusion: The Clock Drawing Test is a useful, easy to apply, clinical tool, for the screening and assessment of cognitive impairment, particularly in the early stages of dementias. As well the Clock Drawing Test is a sensitive tool in the detection of executive control dysfunction.” – Clock drawing test in dementia a critical review.
Another important book is one that I found a couple of years ago in an airport book store. The book is titled “The Immortal Life of Henriette Lacks” by Rebecca Skloot. Her website notes:
“Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells—taken without her knowledge in 1951—became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, in vitro fertilization, and more. Henrietta’s cells have been bought and sold by the billions, yet she remains virtually unknown, and her family can’t afford health insurance.”
This book addresses the ethics in medical research and how patients must be given full informed consent before signing up. Had Henrietta known what they did with her unusual cancer cells, her legacy to her family may have turned out very differently. As the Cayman Islands develop their requirements for clinical trials, lessons learned by Johns Hopkins in this case should be noted and incorporated going forward.
Both of these books are being made into movies which if accurately portrayed from a medical standpoint, will be incredible value in educating the masses on these issues.
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