Condemned to Die: Ask me how. Tell me why.: Letter/Senator Crapo re: PVS misdiagnosis

        Brenna’s Hope Foundation
          PO Box 5002
          Twin Falls, ID 83303-5002

           Founder, Director: Pamela G.
           Blaxton-Dowd

The Honorable Mike Crapo
United States Senate
239 Dirksen Office Building
Washington, D. C. 20510-1205

Dear Senator Crapo:

After reading the New England Journal of Medicine 1994 report, Medical Aspects of the Persistent Vegetative State[1], I am saddened by the lack of follow-up by the medical research community for this devastating diagnosis. Much of the background information is based on information that is at least 30 years old now, and the original definition of PVS originates in 1972. The DX of PVS is dehumanizing and robs a person of their individual dignity. It is past time to retire this DX from our vocabulary.

Scrolling through the article to the “Future Directions”, I am not surprised to see that no further articles appear in the NEJM, updating this medically dehumanizing DX with new research.

“Although investigators have learned much about the persistent vegetative state over the past two decades, several areas deserve additional study.”[2] This report indicated a need for more studies and research. One can only ask. Where are those research projects? If any of these projects were ever undertaken, where are the results?

§ In the area of epidemiology, improved data on the incidence, prevalence, and natural history of the persistent vegetative state would be available if health authorities recorded such a state in patients, in addition to its underlying cause.

§ More careful clinical studies of individual patients could provide data to determine which clinical findings are critical for the diagnosis of a persistent vegetative state.

§ Future PET studies should measure regional cerebral blood flow or glucose metabolism in response to visual, auditory, and somatosensory stimulation, to determine whether depressed cortical regions in patients in a persistent vegetative state can be activated by peripheral sensory stimuli.

§ A confirmation of the absence of evoked activity on the PET scan would help defend the assertion that patients in a persistent vegetative state are completely unaware and insensate²¹.

§ Single-photon-emission computed tomography (SPECT) may be used to study changes in blood flow. SPECT findings generally parallel PET findings, but SPECT units are less expensive and more widely available.

§ Finally, studies should include larger numbers of patients in a persistent vegetative state to establish clinical predictors of recovery of consciousness, other neurologic functions, and survival based on age, cause of the vegetative state, and other comorbid factors.

§ Outcome studies should determine the degree of disability in patients with a late recovery of consciousness. Studies of children with developmental disorders causing a persistent vegetative state may show how they differ from patients in a vegetative state as a result of injuries or degenerative or metabolic disorders.[3]

A current, published report by researchers at the Owens lab at the University of Western Ontario indicates that patients DX with PVS responded to outside stimuli when patients DX with PVS viewed the Alfred Hitchcock movie Coma.[4] This affirms a study reported in 1996 by the British Journal of Medicine[5] that 43% of patients were misdiagnosed and can achieve a better level of recovery than previously expected.

I urge Congress to pursue legislation that would rectify this lack of PVS research, directing the Center for Disease Control to begin collecting data on diagnoses of PVS. Many of these patients suffer from hypoxic-anoxic injury (HAI) to the brain and are currently being ignored by the CDC for data collection and research.

Sincerely:

Pamela G. Blaxton-Dowd
Brenna’s Mom , Founder, Director
Brenna’s Hope Foundation
PO Box 5002
Twin Falls, ID 83303-5002