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VIEWS & REVIEWS: E. Racine, R. Amaram, M. Seidler, M. Karczewska, and J. Illes Media coverage of the persistent vegetative state and end-of-life decision-making Neurology 2008; 0: 01.wnl.0000320507.64683.eev1 [Abstract]

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Media coverage of the persistent vegetative state and end-of-life decision-making

Robert L. Folmer, PhD   (10 February 2009)

Reply from the Editorialist

James L. Bernat, MD   (10 February 2009)

Reply from the authors

Eric Racine, Rakesh Amaram, Matthew Seidler, Marta Karczewska, and Judy Illes   (10 February 2009)

Media coverage of the persistent vegetative state and end-of-life decision-making 10 February 2009
Robert L. Folmer, PhD, Oregon Health & Science University 3710 S.W. U.S. Veterans Hospital Road (NCRAR), Portland, OR 97239 Send Correspondence to journal: Re: Media coverage of the persistent vegetative state and end-of-life decision-making folmerr{at}ohsu.edu Robert L. Folmer, PhD	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.
Reply from the Editorialist 10 February 2009
James L. Bernat, MD, Dartmouth-Hitchcock Medical Center One Medical Center Drive, Lebanon, NH 03756 Send Correspondence to journal: Re: Reply from the Editorialist bernat{at}dartmouth.edu James L. Bernat, MD	I thank Dr. Folmer for providing an interesting historical footnote that adds to our understanding of the sad final 15 years of Mrs. Schiavo’s life. The failure of the thalamic stimulator to improve her hypoxic-ischemic vegetative state comports with what has been reported previously about the irreversibility of her illness. [8] Deep brain stimulation of the medial thalamic nuclei has not produced consistent benefit in patients in a vegetative state [9] but did improve responsiveness in one patient who had been in a minimally conscious state for six years. [10] Dr. Folmer also correctly points out that it is often difficult for neurologists to reach an accurate prognosis in patients with severe brain damage until a sufficient period of observation has elapsed. The conundrum facing physicians and family members of patients is determining how long to wait. Waiting to clarify prognosis creates an inherent ethical tension: the longer physicians support the patient and observe, the greater the benefit to the patient who will recover but the greater the harm to the patient who will not recover and wanted to be permitted to die earlier. Dr. Folmer’s experiences and other published accounts suggest that neurologists should attempt to make an evidence-based prognosis, be humble about their prognostic accuracy, and recommend a conservative period of observation and support. [11] References 8. Hook CC, Mueller PS. The Terri Schiavo saga: the making of a tragedy and lessons learned. Mayo Clin Proc 2005;80:1449-1460. 9. Yamamoto T, Kobayashi K, Kasai M, Oshima H, Fukaya C. Katayama Y. DBS therapy for the vegetative state and minimally conscious state. Acta Neurochir Suppl 2005;93:101-104. 10. Schiff ND, Giacino JT, Kalmar K, et al. Behavioural improvements with thalamic stimulation after severe traumatic brain injury. Nature 2007;448:600-603. 11. Bernat JL. Ethical aspects of determining and communicating prognosis in critical care. Neurocritical Care 2004;1:107-118. Disclosure: The author reports no disclosures.
Reply from the authors 10 February 2009
Eric Racine, Institut de recherches cliniques de Montréal, University of Montreal, McGill University 110 Pine Avenue West, Montreal QC, H2W 1R7, Canada, Rakesh Amaram, Matthew Seidler, Marta Karczewska, and Judy Illes Send Correspondence to journal: Re: Reply from the authors eric.racine{at}ircm.qc.ca Eric Racine, et al.	We thank Dr. Folmer for his insightful comments. He highlights, as we do, the importance of good communication among physicians in the acute and chronic neurologic care settings, openness about end-of-life decisions with caregivers of patients whose prospects for recovery are tenuous, and the critical nature of accurate science reporting to media intermediaries who share stories of life and death with the public. We also agree that we need to improve dissemination of knowledge and research on disorders of consciousness and strengthen multidirectional communication and collaborative research approaches. Disclosure: The authors report no disclosures.