Media coverage of the persistent vegetative state and end-of-life decision-making
Robert L.Folmer, PhD, Oregon Health & Science University, 3710 S.W. U.S. Veterans Hospital Road (NCRAR), Portland, OR 97239folmerr@ohsu.edu
Submitted February 10, 2009
Racine et al. described some aspects of Terri Schiavo's life and death. [1] Dr. Bernat's accompanying editorial comments on the media aspects of this case. [2]
In 1991, I was part of a team at the University of California, San Francisco that evaluated the brain and cognitive functions of Terri Schiavo and other patients in persistent vegetative states (PVS). These evaluations were carried out as part of an experimental treatment protocol conducted by Hosobuchi and Yingling. [3]
After pre-surgical evaluations were complete, Dr. Hosobuchi implanted two patients with stimulating electrodes in the high cervical spinal cord, and he implanted four patients with electrodes in the centrum medianum of the thalamus. Unfortunately, most of the patients in the study did not exhibit improvement because the extent of their brain damage was too severe to allow recovery of normal functions. Because Terri Schiavo was a member of the non-responsive group, I agree with Michael Schiavo's decision to end his wife's life in 2005. Fifteen years seems long enough—too long, some might argue—to remain in such a state with no chance for improvement.
I was motivated to write this correspondence by stories I've heard about several different individuals who unexpectedly entered a comatose state. In each of these cases, within one week of the onset of coma, physicians told family members there was no chance for recovery so they should consider terminating the patient's life support. Such advice contradicts an AAN Position Statement that recommends 1-3 months for adequate diagnosis of PVS. [4] Most of these stories were recounted to me months or years after life support had been removed and the patient died.
In one instance, I was consulted before a patient's life support was turned off. A 68-year-old man suffered a massive stroke, was in a coma and connected to a ventilator. Within the first week, physicians told the patient's wife and 35-year-old daughter there was no chance for recovery, so they should consider taking him off of life support. I convinced the family to give the patient more time—at least one or two months—to determine if recovery was possible. One month after his stroke, the patient regained consciousness. He experiences paralysis on the left side of his body, but he is able to converse coherently, eat what he likes, and enjoy at least part of his life.
Patients and clinicians should think about such possibilities when they are writing or interpreting advance directives. Chronic disorders of consciousness are complex, highly variable, and not well understood by some clinicians and most members of the public. Several studies have reported that misdiagnosis of PVS is fairly common. [1,5,6] Some end-of- life decisions based on such misinformation are likely erroneous.
Racine et al. suggested that the medical and bioethics communities should collaborate to broaden communication and public education about end-of-life decision-making in PVS cases. [1] Increasing the awareness, knowledge, and competence of clinicians and patients is necessary to improve this process and to avoid the ultimate mistake of premature termination of life. [7]
References
1. Racine E, Amaram R, Seidler M, Karczewska M, Illes J. Media coverage of the persistent vegetative state and end-of-life decision- making. Neurology 2008;71:1027-1032.
3. Hosobuchi Y, Yingling C. The treatment of prolonged coma with neurostimulation. Adv Neurol 1993;63:247-251.
4. Certain aspects of the care and management of the persistent vegetative state patient. AAN position statement adopted April 21, 1988. Available online at http://www.aan.com/globals/axon/assets/2693.pdf Accessed December 29, 2008.
5. Andrews K, Murphy L, Munday R, Littlewood C. Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit. BMJ 1996;313:13-16.
6. Gill-Thwaites H. Lotteries, loopholes and luck: misdiagnosis in the vegetative state patient. Brain Inj 2006;20:1321-1328.
7. Bacon D, Williams MA, Gordon J. Position statement on laws and regulations concerning life-sustaining treatment, including artificial nutrition and hydration, for patients lacking decision-making capacity. Neurology 2007;68:1097-1100.
Racine et al. described some aspects of Terri Schiavo's life and death. [1] Dr. Bernat's accompanying editorial comments on the media aspects of this case. [2]
In 1991, I was part of a team at the University of California, San Francisco that evaluated the brain and cognitive functions of Terri Schiavo and other patients in persistent vegetative states (PVS). These evaluations were carried out as part of an experimental treatment protocol conducted by Hosobuchi and Yingling. [3]
After pre-surgical evaluations were complete, Dr. Hosobuchi implanted two patients with stimulating electrodes in the high cervical spinal cord, and he implanted four patients with electrodes in the centrum medianum of the thalamus. Unfortunately, most of the patients in the study did not exhibit improvement because the extent of their brain damage was too severe to allow recovery of normal functions. Because Terri Schiavo was a member of the non-responsive group, I agree with Michael Schiavo's decision to end his wife's life in 2005. Fifteen years seems long enough—too long, some might argue—to remain in such a state with no chance for improvement.
I was motivated to write this correspondence by stories I've heard about several different individuals who unexpectedly entered a comatose state. In each of these cases, within one week of the onset of coma, physicians told family members there was no chance for recovery so they should consider terminating the patient's life support. Such advice contradicts an AAN Position Statement that recommends 1-3 months for adequate diagnosis of PVS. [4] Most of these stories were recounted to me months or years after life support had been removed and the patient died.
In one instance, I was consulted before a patient's life support was turned off. A 68-year-old man suffered a massive stroke, was in a coma and connected to a ventilator. Within the first week, physicians told the patient's wife and 35-year-old daughter there was no chance for recovery, so they should consider taking him off of life support. I convinced the family to give the patient more time—at least one or two months—to determine if recovery was possible. One month after his stroke, the patient regained consciousness. He experiences paralysis on the left side of his body, but he is able to converse coherently, eat what he likes, and enjoy at least part of his life.
Patients and clinicians should think about such possibilities when they are writing or interpreting advance directives. Chronic disorders of consciousness are complex, highly variable, and not well understood by some clinicians and most members of the public. Several studies have reported that misdiagnosis of PVS is fairly common. [1,5,6] Some end-of- life decisions based on such misinformation are likely erroneous.
Racine et al. suggested that the medical and bioethics communities should collaborate to broaden communication and public education about end-of-life decision-making in PVS cases. [1] Increasing the awareness, knowledge, and competence of clinicians and patients is necessary to improve this process and to avoid the ultimate mistake of premature termination of life. [7]
References
1. Racine E, Amaram R, Seidler M, Karczewska M, Illes J. Media coverage of the persistent vegetative state and end-of-life decision- making. Neurology 2008;71:1027-1032.
2. Bernat JL. Theresa Schiavo's tragedy and ours, too. Neurology 2008;71:964-965.
3. Hosobuchi Y, Yingling C. The treatment of prolonged coma with neurostimulation. Adv Neurol 1993;63:247-251.
4. Certain aspects of the care and management of the persistent vegetative state patient. AAN position statement adopted April 21, 1988. Available online at http://www.aan.com/globals/axon/assets/2693.pdf Accessed December 29, 2008.
5. Andrews K, Murphy L, Munday R, Littlewood C. Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit. BMJ 1996;313:13-16.
6. Gill-Thwaites H. Lotteries, loopholes and luck: misdiagnosis in the vegetative state patient. Brain Inj 2006;20:1321-1328.
7. Bacon D, Williams MA, Gordon J. Position statement on laws and regulations concerning life-sustaining treatment, including artificial nutrition and hydration, for patients lacking decision-making capacity. Neurology 2007;68:1097-1100.
Disclosure: The author reports no disclosures.