“By now the scene is familiar and the story predictable. An expectant family is in my office at Weill Cornell Medical College sharing the story about how a son or daughter, husband or wife, mother or father sustained a brain injury. (…)
“When they arrive, most are worn out. They are like refugees, having been cast aside by an indifferent health care system that provided brilliant emergent care only to abandon them thereafter. Irrespective of differences in race, ethnicity, class, or state or origin, a stereotype of neglect emerges. (…)
“Brains recover by biological standards, not reimbursement criteria. To impose the latter on the former is to fail take account of time frames needed for recovery by the injured brain, which as a nonlinear system resists simple predictive models. Yet that is precisely what medical necessity presupposes. It dictates the length of rehabilitation, access to brain-injury treatment programs, and other benefits. A reimbursement construct, written into federal law, medical necessity is seen by families as scripting dire outcomes. It is an affront to patients and families because it denies care notwithstanding our evolving understanding of biomarkers of the recovering brain.
“(…) Put another way, if we do not yet understand how brains recover from the MCS (minimal conscience state), and the time it might take, how could anyone say progress is delayed? Or that a patient is an inefficient outlier whose benefits should be curtailed?
“(…) Patients not “showing progress” are discharged from rehabilitation programs to nursing homes where they linger without rehabilitation or diagnostic oversight. The impact of a medical necessity determination is high, potentially depriving a patient of the opportunity to recover or, as critically, be placed in a medical context in which an emerging recovery might be identified.
“This is not a trivial problem. Recent data reveals that the diagnostic error rate of patients with traumatic brain injury in nursing homes diagnosed as vegetative may in fact be as high as 40 percent, with this patients actually being in MCS. This is troubling data and a significant error rate with profound implications. It means that a large number of patients are taken to be permanently unconscious when in fact they may be conscious, albeit in the MCS. Although there is a risk to the following speculation, I am haunted by it: imagine lying in a nursing home bed, cognitively impaired and wondering, why the staff and even your family are treating you as if you are not there. What would possibly be the reason? Don’t they care? Don’t they know I am here?
[Joseph J. Fins, Rights Come to Mind, Brain Injury, Ethics, and the Struggle for Consciousness, Cambridge University Press, 2015]
It has been a long time since I’ve read anything as important as the above.
This is the research that will drive the change that we need.
After this, no-one will be able to say that they understand our ‘personal tragedy’ but that a health system has to look at a ‘return on investment’ – thus justifying the abandonment of our loved ones, justifying un-justifiable negligence.
The above has been written by a heavy-weight: Joseph J. Fins is the E. Williams Davis Jr. M.D., Professor of Medical Ethics and Chief of the Division of Medical Ethics at Weill Cornell Medical College where he also serves as Professor of Medicine, Professor of Health Care Policy and Research, and Professor of Medicine in Psychiatry. He is the founding chair of the Ethics Committee of New York-Presbyterian Weill Cornell Medical Centre where is is an attending physician and Director of Medical Ethics. Dr Fins co-directs the Consortium for the Advanced Study of Brain Injury and is adjunct faculty member and senior attending physician at Rockefeller University and Rockefeller University Hospital. And the list goes on…
He is a someone who knows what he is talking about. – As we do.
Just in case you went through the few paragraphs above in a bit of a hurry, go back and read them again. Slowly. Then send a link to this to your friends. Especially if they work with severely brain injured persons or have a severely brain injured family member or friend.