My last blog contained an email from one of the charter contributors to http://waiting.com waiting.com was created to provide help for those who were waiting for someone to awake from a coma. With the creation of that page, the phone calls began to come into our office asking perhaps the most terrible question a person can ever ask themselves, at what point do we decide to withdraw life support.
I am not a doctor but a lawyer who spends his life representing people who have survived a brain injury. I have no medical training to qualify me to second guess the advice of a doctor who has properly considered this horrible question, in light of the full diagnostic criteria as it has evolved in current medical science. I wish that physicians would give a fully informed answer to this question. At no time, do family members need a more thoughtful, fully informed discussion. Sadly, the answer in 90% of coma cases is: We Will Just Have to Wait and See.
That is the easy answer of course. It may even be the technically correct answer. After all, there is no predicting when a person will emerge from a coma. But, current medical research does tell us considerably more about coma prognosis than that. The literature contains clear diagnositic criteria, which will help to shed some light on prognosis. Of course, no family really wants to hear the bad news, so saying nothing specific, may be easier for the doctor. But is that the right thing to do?
I believe that hope is important, that hope is essential, but there comes a time, when a family does need to start to deal with the horrible realities of what may lie ahead. What has always frustrated me is why doctors don’t offer the functional imaging option. For more than a decade, researchers have been calling for PET scans or SPECT scans, to help identify whether there is any meaningful brain activity, inside the comatose brain. What is functional imaging? It is a scan that can tell us how much the brain is actually working.
The PET scan and SPECT scan use a radioactively tagged glucose (sugar) molecule. If the glucose is being used to any significant degree, the brain must be working. In the 10 years since the first calls for routine functional imaging in coma cases, the functional imaging technology has grown exponentially. Not only are PET scans now more available and have radically improved quality and resolution, but fMRI has now readily available, at almost any major imaging center. fMRI is actually uses a conventional MRI scanner, but can measure the extent of brain activity, not by the sugar used, but by the oxygenation changes within the brain. A working brain must not only use glucose, it must also use oxygen.
Without any meaningful activity, there is little likelihood of emergence, and even if there is emergence, little chance of a satisfactory recovery. But if there is activity, then more radical measures should be undertaken to stimulate the brain, and more patience is warranted. I have instructed my medical power of attorney to insist on a functional imaging test if I am ever in that position.
We all hear about the news reports of the miracle emergence after 7 years in a coma. For a discussion of what it means to emerge from a coma, click here. I will always remain skeptical of such late emergency stories, unless those people were not truly comatose, but “locked in.” (I will discuss “locked in syndrome” later this week, but essentially that is a state where a person is fully awake, but there neurological damage leaves them incapable of overt communication. Locked In Syndrome is something that could absolutely be determined by a PET or other functional imaging scan, is someone bothered to order the test. ) But where a person is truly comatose, I believe that the longer the coma persists, the less the likelihood of any emergence, and if there is an emergence, little or no chance of a satisfactory recovery. Most of those who have traumatic injuries and do have a satisfactory recovery, have emerged within one month of their injury. Coma’s that persist longer than two months, leave a very marginal chance of a satisfactory recovery.
If the hours and weeks of waiting have gone on to long, it is time to demand better answers and active diagnostic interventions to give some solid answers.