Authors

  1. Fins, Joseph J. MD, MACP, FRCP

Article Content

IN FEBRUARY 2017, I gave a book talk about Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness1 at Brooklyn Law School. Their Center for Health, Science and Public Policy convened a symposium entitled, "Measured Experience: Neuroimaging, Consciousness and the Law," to explore how emerging neurotechnologies informed legal and ethical issues related to severe brain injury. I was honored to give the plenary address and to have an excellent set of respondents, one of whom was Stacey A. Tovino.2

 

Tovino, a nationally known health law professor, shared the story of a colleague at the William S. Boyd Law School, University of Las Vegas, who had been brutally assaulted while jogging the previous fall and her advocacy on behalf of her fallen friend. Her colleague had nearly died and had sustained a serious brain injury. I was sickened by the story but uplifted by Tovino's efforts to help her friend and her acknowledgment that my book helped to bolster her advocacy. As Tovino told it, if she hadn't stepped into the fray her friend would never have gotten the rehab she needed and deserved. Like so many others with a disorder of consciousness, she would have lingered in custodial care, her potential for recovery still unknown and not fully realized.

 

By the time conference took place her friend was living independently back in her home in Las Vegas. By all accounts, it was a huge win due to great acute care and rehabilitation secured by a diligent friend, who just happened to be a highly skilled healthcare attorney. And that was where I thought the story had ended.

 

In the summer of 2017, I received an inquiry on the UNLV Law School letterhead from a law professor, Leslie Griffin, who was interested in our clinical ethics fellowship at Weill Cornell Medical College. At first it seemed like a generic inquiry, but as I read further the narrative elements reminded me of a case I had heard about. But where? As improbable as it seemed, I asked myself, could this possibly be from that grievously injured jogger who Stacey Tovino had spoken about months before? And to my surprise and delight it was.

 

Over the past year I have seen Professor Griffin at a couple of meetings. Her recovery is a beautiful thing to behold. It was hard to believe how far she has come, and this progress is a sobering reminder about the potentiality that survivors have if they receive proper medical care, clinical surveillance, and rehabilitation as recommended by the recent practice guideline promulgated by the American Academy of Neurology (AAN), the American College of Rehabilitation Medicine (ACRM), and the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR).3,4 And needless to say, patients shouldn't need to have a skilled friend like Stacey Tovino to get the help they need.

 

Not everyone will be as fortunate as Professor Griffin. But her story should be the norm and not the exception. I don't mean to imply that everyone will be able to return to their post at a law school. But every survivor should have the chance to actualize their potential for their personal best functional recovery.

 

In the fall of 2018, I saw Professor Griffin at the Institute for the Medical Humanities at the University Texas Medical Branch, Galveston, where she was doing a fellowship. I was there to give the Moody Lecture on Brain Injury, hosted by William J. Winslade. Winslade, the distinguished bioethicist and legal scholar, is himself a brain injury survivor and author of the pioneering volume, Confronting Traumatic Brain Injury: Devastation, Hope and Healing.5 I am indebted to him for the dinner he graciously hosted for me with his colleagues and his wonderfully prescient book. I had the opportunity to review it in 1999 for The Hastings Center Report and his insights helped to kindle my interest in the ethical dimensions of severe brain injury.6

 

It was at that dinner that I invited Professor Griffin to tell her story in the Journal of Head Trauma Rehabilitation Ethics Special Section. We are grateful that she has and are especially honored to share a survivor's perspective with our readership.

 

REFERENCES

 

1. Fins JJ. Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness. New York, NY: Cambridge University Press; 2015. [Context Link]

 

2. Tovino SA. A Right to Care. 70 Ala. L. Rev. 183(2018). [Context Link]

 

3. Giacino JT, Katz DI, Schiff ND, et al Practice guideline: disorders of consciousness archives of physical medicine and rehabilitation. 2018;99(9):1710-1719. [Context Link]

 

4. Fins JJ, Bernat JL. Ethical, palliative, and policy considerations in disorders of consciousness. Arch Phys Med Rehabil. 2018;99(9):1927-1931. [Context Link]

 

5. Winslade WJ. Confronting Traumatic Brain Injury: Devastation, Hope and Healing. New Haven, CT: Yale University Press; 1998. [Context Link]

 

6. Fins JJ. In a Survivor's Voice. A Review of Confronting Traumatic Brain Injury: Devastation, Hope and Healing by William J. Winslade. New Haven, CT: Yale University Press; 1998. [Context Link]