Too easily medical professionals with little qualifications to make a determination of persistent vegetative state (PVS) give families no hope of recovery from an anoxic brain injury. If this ugly term is going to end, it must begin with those of us who have seen miracles, who know our loved ones lived, loved, understood, and fight each day to recover against the doubtful odds the doctors give.
My mind can travel across the country to one success story after another, people for whom doctors gave up. People whose families loved them with a love that would not let them go. Jimmy, Chris, Steve, Jeni, Mack, Sammie, and so many others. They are making it against all odds. But we don't hear their stories in the media. We only hear what the doctors want us to hear.
The British Journal of Medicine published a study in 1996, stating that 43% of patients diagnosed with PVS had been MISDIAGNOSED. That is a whole lot of misdiagnosing. That is a whole lot of families having the rug pulled out from under them and offering them no hope. Many of those diagnosed with PVS were blind or had a severe visual handicap: therefore, they were written off as PVS.
Read the study results here.
The Royal College of Physicians' report on the permanent
vegetative state3
supports the view expressed by others that the diagnosis requires regular
assessment and taking into account the observations by carers and family.5 However,even
these conditions can result in misdiagnosis. Childs et al reported that 37% of
patients admitted more than one month after injury with a diagnosis of coma or
persistent vegetative state had some level of awareness.7 In a group of
longer term patients in a nursing home, Tresch et al found that 18% of those
diagnosed as being in the persistent vegetative state were aware of themselves
or their environment.8
Physicians can graduate at the bottom of their medical class and be tossing out this PVS diagnosis as if they actually learned and retained one iota of information on brain injury rehabilitation. We, the families, are intimidated by their pressure. They know they can pressure enough and get us into a box where we believe that the unholy doctors actually know what they are saying and telling us to do.
The British have it right. Doctors are poorly trained to make this diagnosis. We got the train off the track 30 years ago when the American medical profession developed bio-ethics committees to determine who lives and who dies. This is complicated by the introduction of organ transplants from cadavers. This made ending life of those with a brain injury popular. The world followed us over the cliff.
I have no qualms with donations of kidneys and partial liver transplants from living and informed donors. I have a problem with the medical professionals pressuring the poor and insurance disadvantaged into doing the "noble thing" and "letting go" of the patient without giving families the other side of the story. The story of hope and recovery. The story of miracles.
The diagnosis of PVS is just as ugly as other words and phrases that are now considered unacceptable in our society. It is time we take another look, stop listening to those who make a living off of the transplant market, and think for ourselves.
How do we do that?
1) We demand studies in the USA on the diagnosis of PVS, and not using those who were recently diagnosed.
2) We demand studies in the rehabilitation of patients with a hypoxic/anoxic brain injury.
3) Traumatic Brain Injury (TBI) already receives multi-millions of dollars for research and rehabilitation. We don't have to take money from those projects. We demand that some of the money tossed at frills and pork be transferred to hypoxic/anoxic brain injury rehabilitation.
And, we stop using the term persistent vegetative state for our loved ones. And we stop doctors in their tracks from using it in front of our loved ones.
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