Objective. We seek to investigate ethical issues in the use of neuroimaging in behaviorally nonresponsive patients who have suffered serious brain injury. Both the research team and research program are closely integrated with a CIHR funded project using functional magnetic resonance imaging (fMRI) and electroencephalography (EEG) to measure residual cognitive function in this patient population.

Background. Improvements in intensive care have led to an increased survival rate following serious brain injury. Patient outcome is highly variable. Following a period of coma, some patients go on to make a good recovery, while others progress into a vegetative or minimally conscious state. Vegetative patients are awake but have no awareness of self or environment, while minimally conscious patients show inconsistent evidence of awareness. In both cases, assessment is very difficult and depends on subjective interpretation of observed behavior. Indeed, the misdiagnosis rate may be as high as 43%. Recent advances in neuroimaging suggest a solution. Both fMRI and EEG have been used to detect residual cognitive function and even conscious awareness in vegetative and minimally conscious patients. Neuroimaging may improve diagnosis and prognostication in these patients. Additionally, in 3 reported cases, neuroimaging has been used to communicate with vegetative and minimally conscious patients, raising the prospect of involving them in decisions regarding their care. These techniques are beginning to be applied to comatose patients soon after serious brain injury. Evidence of preserved cognitive function may predict recovery, and, if so, this information will be valuable to families weighing the continuation of life-sustaining therapy. Complex ethical issues arise due to the vulnerability of patients and families, difficulties interpreting negative results, restriction of communication to “yes” or “no” answers, and cost.

Methods. Our research program uses a mixed methods approach, employing ethical analysis and a variety of empirical techniques, including fMRI studies of healthy volunteers, quality of life instrument development, and interviews of families.

Project 1: Decision making capacity. Providing informed consent for treatment requires the capacity to make autonomous decisions. But can decision making capacity be assessed in behaviorally nonresponsive patients? In previous work, we argued that in principle, at least, it is possible to do so by breaking down the components of capacity into constitutive cognitive functions. In this project we will specify these cognitive functions and detail their assessment. Further, we will develop and pilot in healthy volunteers a series of scenarios and questions suitable for neuroimaging to assess capacity to make particular decisions.

Project 2: Ethics of welfare. We examine the ethics of welfare as a framework to guide the use of neuroimaging. According to this approach, the fact that an individual is sentient—capable of experiencing pain or pleasure—means that his or her interests matter in thinking about what to do. We will argue on neuroanatomical and behavioral grounds that patients who demonstrate awareness are probably sentient. The ethics of welfare grounds a moral obligation to explore the subjective experiences of these patients. To accomplish this, we will develop novel quality of life instruments for use with neuroimaging.

Project 3: Impact on families. Families play an important role in the care of patients after serious brain injury. They act as proxy decision makers, provide care, and suffer the emotional strain that accompanies chronic illness and uncertainty. In a grounded theory interview study, we will systematically document families’ understanding of the patient’s condition, expectations of neuroimaging, and the impact of the results of neuroimaging. The results of this study will be used, in part, to develop educational materials for families considering neuroimaging.

Project 4: Comatose patients. Recent work seeks to extend the use of neuroimaging to investigate residual cognitive function in comatose patients within days of serious brain injury. Here we will provide the first ethical analysis of neuroimaging in this setting. We will ask whether and how the results of experimental neuroimaging should be shared with families in the clinical context. Further, we will examine the interplay between neuroimaging results and decisions to continue or withdraw life-sustaining therapies.

Publications

Peterson A, Naci L, Weijer C, Owen AM (2013) A principled argument, but not a practical one. AJOB-Neuroscience; 4(1): 52-53.

Peterson A, Naci L, Weijer C, Cruse D, Fernández-Espejo D, Graham M, Owen AM (2013) Assessing decision making capacity in the behaviorally non-responsive patient with residual covert awareness. AJOB-Neuroscience; 4(4): 3-14.

Weijer C, Peterson A, Webster F, Graham M, Cruse D, Fernández-Espejo D, Gofton T, Gonzalez-Lara LE, Lazosky A, Naci L, Owen AM (2014) Ethics of neuroimaging after serious brain injury. BMC Medical Ethics; 15(41).

Peterson A, Norton L, Naci L, Owen AM, Weijer C (2014) Toward a science of brain death. AJOB; 14(8): 29-31.

Graham M, Weijer C, Peterson A, Naci L, Cruse D, Fernández-Espejo D, Gonzalez-Lara L, Owen AM (2014) Acknowledging awareness: Informing families of individual research results for patients in vegetative states. J of Med Ethics; 0: 1-5 doi:10.1136/medethics-2014-102078

Peterson A, Cruse D, Naci L, Weijer C, Owen AM (2015) Risk, diagnostic error, and the clinical science of consciousness. NeuroImage:Clinical; 7: 588-597.

Graham M, Weijer C, Cruse D, Fernández-Espejo D, Gofton T, Gonzalez-Lara L, Lazosky A, Naci L, Norton L, Peterson A, Speechley K, Young B, Owen AM (2015) An ethics of welfare for patients diagnosed as vegetative with covert awareness. AJOB-Neuroscience; 6(2): 31-41.

Weijer C, Bruni T, Gofton T, Young GB, Norton L, Peterson A, Owen AM (2015) Ethical considerations in functional magnetic resonance imaging research in acutely comatose patients. Brain; in press.

Cairncross M, Peterson A, Lazosky A, Gofton T, Weijer C (2016) Assessing decision making capacity in patients with communication impairments: A case study. Clinical Neuroethics; in press.

Media

Confronting ethical implications of detecting awareness in the vegetative state. Western News. October 12, 2012.

Ethical implications of detecting awareness in disorders of consciousness. Rotman Institute Blog. November 20, 2012.

Supreme Court upholds right to demand life support. Global News. October 18, 2013.

Rasouli life-support case: SCC rules consent needed before ending treatment. CTV News. October 18, 2013.

Portable mind-reader gives voice to locked-in people. The New Scientist. January 29, 2015.

More families hope man on life-support for 15 years is their lost loved one. KPBS News. May 4th, 2015.

The open mind. CBC Radio, Ideas From The Trenches. May 4th, 2016. 

Presentations

Peterson A. Ethical implications of detecting covert awareness in disorders of consciousness. (Oral presentation). The Hastings Center visiting scholar lecture series. New York, USA. June 2012.

Graham M, Peterson A, Naci L, Weijer C, Cruse D, Fernández-Espejo D, Owen AM. Ethical implications of disclosing research results to patients’ families in disorder of consciousness research.(Oral presentation). Brain Matters 3. Ohio, USA. October, 2012.

Peterson A, Naci L, Weijer C, Cruse D, Fernández-Espejo D, Graham M, Owen AM. Ethical implications of detecting awareness in VS: Question asking through a binary interface. (Oral presentation). Brain Matters 3. Ohio, USA. October, 2012.

Peterson A, Weijer C, Naci L, Cruse D, Fernández-Espejo D, Shriver A, Graham M, Owen AM. Are you in pain? Attending to the sentience of the disorder of consciousness patient. (Poster presentation). The Canadian Association of Neuroscience. Toronto, Canada. May, 2013.

Owen AM, Peterson A, Naci L, Bor D, Young B, Weijer C. Ethical implications of detecting covert awareness in the vegetative state. (Plenary symposium). Association for the Scientific Study of Consciousness 17th Annual Meeting. San Diego, USA. July, 2013.

Graham M , Weijer C, Peterson A, Naci L, Fernández-Espejo D, Cruse D, Lazosky A, Gonzalez-Lara L, Owen AM. Communication with patients diagnosed with disorders of consciousness, and the moral significance of sentience. (Poster presentation). International Neuroethics Society. San Diego, USA. November, 2013.

Peterson A, Cruse D, Naci L, Fernández-Espejo D, Graham M, Lazosky A, Weijer C, Owen AM. Ethical challenges in deriving the clinical utility of EEG for diagnosis of the vegetative state. (Poster presentation). International Neuroethics Society. San Diego, USA. November, 2013.

Weijer C, Peterson A, Naci L, Graham M, Cruse D, Fernández-Espejo D, Lazosky A, Owen AM. Why discussion of end-of-life decisions through brain computer interfaces starts the ethical debate off on the wrong foot. (Oral and poster presentation). International Neuroethics Society. San Diego, USA. November, 2013.

Weijer C. Ethical issues in cluster randomized trials in health research: examples from neuroscience and neurology. (Oral presentation and seminar). National Core for Neuroethics, UBC, speaker series. Vancouver, Canada. July, 2013.

Graham M, Weijer C, Peterson A, Naci L, Fernandez-Espejo D, Cruse D, Lazosky A, Gonzalez-Lara L, and Owen AM. Communication with patients diagnosed with disorders of consciousness, and the moral significance of sentience. (Oral presentation). Brain Matters 4: Brain Science and Social Responsibility. Vancouver, Canada. March, 2014.

Weijer C, Peterson A, Naci L, Graham M, Cruse D, Fernandez- Espejo D, Lazosky A, and Owen AM. Why discussion of end-of-life decisions through brain computer interfaces starts the ethical debate off on the wrong foot. (Oral presentation). Brain Matters 4: Brain Science and Social Responsibility. Vancouver, Canada. March, 2014.

Bell E, Burgess M, Racine E, Weijer C, Forlini C. A recipe for success or disaster? Exploring the role and contribution of work groups and workshops in neuroethics. (Plenary panel). Brain Matters 4: Brain Science and Social Responsibility. Vancouver, Canada. March, 2014.

Weijer C, Graham M, Peterson A, Naci L, Cruse D, Fernandez-Espejo D, Gonzalez-Lara L, Owen AM. Acknowledging awareness: informing families of individual research results for patients in the vegetative state. (Oral presentation). Canadian Bioethics Society. Vancouver, Canada. May, 2014.

Peterson A, Naci L, Weijer C, Benmordecai D, Cruse D, Fernandez-Espejo D, Gofton T, Gonzalez-Lara L, Lazosky A, Norton L, Speechley K, Young B, Owen AM. Is it possible assess decision making capacity in the disorders of consciousness patient? (Oral presentation). Canadian Bioethics Society. Vancouver, Canada. May, 2014.

Graham M, Weijer C, Peterson A, Naci L, Fernandez-Espejo D, Cruse D, Lazosky A, Gonzalez-Lara L, and Owen AM. Communication with patients diagnosed with disorders of consciousness, and the moral significance of sentience. (Oral presentation). Canadian Bioethics Society. Vancouver, Canada. May, 2014.

Illes J, Fins JJ, Ford P, Weijer C, Durr A (Panel). How ought incidental findings be conveyed to patients and research subjects? (Plenary symposium). Cambridge–Institut du Cerveau et de la Moelle Épinière (ICM) Neuroethics Network. Paris, France. June, 2014.

Graham M, Weijer C, Cruse D, Fernandez-Espejo D, Gonzalez-Lara L, Naci L, Peterson A, Speechley K, Owen AM. Evaluating subjective well-being in patients diagnosed as vegetative, with covert awareness. (Poster presentation). International Neuroethics Society. Washington DC, USA. November, 2014.

Peterson P, Cruse D, Naci L, Fernandez-Espejo D, Bruni T, Weijer C, Owen AM. A framework for comparing neuroimaging techniques used to assess disorders of consciousness. (Poster presentation). International Neuroethics Society. Washington DC, USA. November, 2014.

Bruni, T., Weijer, C. Competent to continue treatment? The case of impulse control disorders caused by deep-brain stimulation for Parkinson’s disease. (Poster presentation). International Neuroethics Society. Washington DC, USA. November, 2014.

Weijer C, Bruni T, Gofton T, Norton L, Peterson A, Young GB, Owen AM. Ethical issues in fMRI research in patients with severe brain injuries in the intensive care unit. (Poster presentation). International Neuroethics Society. Washington DC, USA. November, 2014.

Horn A, Naci L, Weijer C, Owen AM. The master of suspense: using movies and fMRI to decode the phenomenology of conscious experience in vegetative state patients. (Poster presentation). Montreal Neuroethics Conference for Young Researchers. Montreal, Canada. April, 2015.

Racine E, Bruni T, Flamenbaum J, Wade L. How to be successful in your early neuroethics career. (Plenary panel). Montreal Neuroethics Conference for Young Researchers. Montreal, Canada. April, 2015.

Horn A, Naci L, Weijer C, Owen AM. Decoding phenomenal experience in vegetative state patients. (Poster presentation) Canadian Association of Neuroscience. Vancouver, Canada. May, 2015.

Weijer C. Consciousness unbound: The ethics of neuroimaging after severe brain injury. (Invited oral presentation). Ethics in the Public Sphere Lecture Series, University of California San Diego. San Diego, USA. April, 2015.

Bruni, T., Weijer, C. Competent to continue treatment? The case of impulse control disorders in deep-brain stimulation for Parkinson’s Disease. (Oral presentation). Canadian Bioethics Society. Winnipeg, Canada. May, 2015.

Weijer C. Functional MRI studies in ICU patients after severe brain injury: New opportunities, new ethical challenges. (Invited oral plenary presentation). Brain Matters 5. Scottsdale, USA. May, 2015.

Graham M, Weijer C. The moral status of patients diagnosed as vegetative with covert awareness. (Oral presentation). Canadian Bioethics Society. Winnipeg, Canada. May 2015.

Bayne T, Gibson R, Miracchi L, Weijer C. Consciousness in the vegetative state: conceptual, empirical and ethical perspectives. (Plenary symposium). Towards a Science of Consciousness. Helsinki, Finland. June, 2015.

Weijer C. Nancy and Maggie in Dialogue: Case discussion. (Plenary symposium). Cambridge–Institut du Cerveau et de la Moelle Épinière (ICM) Neuroethics Network. Paris, France. June, 2015.

Bruni T, Weijer C. Competent to continue treatment? The case of impulse control disorders in deep-brain stimulation for Parkinson’s Disease. (Oral presentation). 34th International Congress on Law and Mental Health. Vienna, Austria. July, 2015.

Peterson A, Weijer C, Owen AM. Clinical validation studies and the science of consciousness. (Poster presentation). Association for the Scientific Study of Consciousness 19th Annual Meeting. Paris, France. July, 2015.

Horn A, Naci L, Weijer C, Owen, A M. The master of suspense: using movies and fMRI to decode the phenomenology of conscious experience in vegetative state patients. (Poster presentation). International Neuroethics Society. Chicago, USA. October, 2015.

Bruni T, Weijer C, Owen AM. Disclosure of individual results in fMRI research involving acutely comatose patients. (Poster and oral presentation). International Neuroethics Society. Chicago, USA. October, 2015.

Peterson A, Fernandez-Espejo D, Silvers A, Goering S, Weijer C. Reading the minds of severely brain injured persons. (Plenary symposium). American Philosophical Association, Pacific Division, sponsored by The Society for Philosophy and Disability. San Francisco, USA. March, 2016.

Pitre T. Criteria for the disclosure of information in neuroimaging studies for patients in vegetative state. (Oral  Presentation). Canadian Bioethics Society. Toronto, Canada. May, 2016.

Stephensen M, Peterson A, and Weijer C. Are Organ donors really dead, or just dead enough? Reassessing the Dead-Donor-Rule. (Oral Presentation). Canadian Bioethics Society. Toronto, Canada. May, 2016.