Just a few thoughts
A Diagnosis is sometimes used for medical benefits as opposed to a true descriptive of symptoms.
PVS is not a diagnosis in the sense that strep is. It is based on a list of symptoms instead of growing microbes in a dish.
I am not familar with PET Scans, but I understand it is the gold standard for a PVS diagnosis.
There is a reason Terri has not had a PET Scan.
Who benefits if Terri has a PVS diagnosis?
Does she receive Medicare or Private Insurance benefits? Medicare is very, very picky about meeting the criteria for any benefits it pays out.
I would look very carefully at what benefits Medicare paid out. I would look at dates. For instance, when did tube feedings begin? Tube feeding are the big money makers. But the need for a tube feeding needs to be certified by the attending physician. Hospice care, wheelchairs, etc. ALL need to meet detailed criteria. Some of these need to be recertified after a period of time. Who is her attending and who has been signing the certification. Anything filed with Medicare must be backed up by hard copy in the treating or hospice facility.
If Medicare or any other insurance company has paid benfits to Terri, it may explain the lack of testing. Testing may reveal some benefits are not covered. Make no mistake medicare and Insurance are money makers. No one wants a private pay--they want an insured patient.
This may be where the money trail is. This hospice is already in deep doo-doo with Medicare. They already owe Medicare big bucks.
for instance:
http://www.medicare.gov/publications/pubs/pdf/hosplg.pdf
Treatment to cure your terminal illness. As a hospice patient, you can get comfort care to help you cope with your illness, not cure it.
Comfort care includes drugs for symptom control and pain relief, physical care, counseling, and other hospice services (see page 5).
Hospice uses medicine, equipment, and supplies to make you as comfortable and pain-free as possible. Medicare will not pay for treatment to cure your illness. You should talk with your doctor if you are thinking about potential treatment to cure your illness.
As a hospice patient, you always have the right to stop getting hospice care and go back to your regular doctor or health plan