Dr. Joseph J. Fins is a nationally-known and well-esteemed physician specializing in neuroethics. Specifically, he is, “focused on advancing the care of patients with severe brain injury and bringing the fruits of neuroscience to a very marginalized population”. Beyond heading a Division at the New York Presbyterian Hospital and Cornell and other prestigious appointments, he was appointed by President Bill Clinton to The White House Commission on Complementary and Alternative Medicine.
In 2015, Fins published a book, Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness that encapsulates his interviews with more than 50 families, who are all personally affected by severe brain injury. A particular story in an article about the book caught my eye: “Several years ago a father approached me, concerned about the care his son was receiving. The son had been in a car accident… was placed in a nursing home… The father feared his son was being ignored or, worse, left in pain or distress.”
As with many brain injured individuals, I have a similar story. To be candid about my experience, within a day or two of my brain injury, because of the severity of my injuries, the doctor handling my case asked my parents if they would sign off to allow my organs to be donated upon my imminent death. Fortunately, my parents said no and immediately requested another neurologist to handle my case. I was lucky to have parents who were so forthcoming regarding their expectations from my doctors. The article, Why advances in treating those with brain injuries require advances in respecting their rights, shows that the mentioned father loved his son very much, but it does not state what happened with his son beyond the father’s fear. (One can only hope for the best.) I find that it advances understanding and can even be reassuring to learn about others’ brain injury survival stories.
The world seems to be gaining more knowledge of brain injury. For example, the recently passed federal 21st Century Cures Act allocates $1.5 billion for brain research. “New treatments bring new hope,” and hopefully, more understanding and acceptance. As a brain injured person myself, I definitely plan on reading this book.