Ethical issues in neuroimaging after serious brain injury
Overview
Improvements in intensive care have led to an increased survival rate following severe brain injury. Following a period of coma, some patients go on to make a good recovery, while others progress into a vegetative state. Vegetative patients are awake but have no awareness of self or environment. Both functional MRI and EEG have been used to detect residual cognitive function and even conscious awareness in vegetative patients. Neuroimaging may improve diagnosis and prognostication in these patients. In 3 reported cases, neuroimaging has been used to communicate with vegetative patients, raising the prospect of involving them in decisions regarding their care. 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.
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.
Providing informed consent for treatment requires the capacity to make autonomous decisions. But can decision making capacity be assessed in behaviorally nonresponsive patients? We argue that 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.
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 suffering 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.
Families play an important role in the care of patients after severe 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.
Recent work seeks to extend the use of neuroimaging to investigate residual cognitive function in comatose patients within days of severe 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.
Members
Principal investigators
Adrian M. Owen (Western University)
Charles Weijer (Western University)
Co-investigators
Teneille Gofton (London Health Science Centre)
Andrea Lazosky (London Health Science Centre)
Kathy Speechley (Western University)
Fiona Webster (Western University)
Bryan Young (London Health Science Centre)
Trainees
Tommaso Bruni (Rheinische Friedrich-Wilhelms-Universität Bonn)
Damian Cruse (University of Birmingham)
Davinia Fernández-Espejo (University of Birmingham)
Robert Foley (Western University)
Laura Gonzalez-Lara (Western University)
Mackenzie Graham (University of Oxford)
Lorina Naci (Trinity College Dublin)
Loretta Norton (Kings University College)
Andrew Peterson (George Mason University)
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 4, 2015.
The open mind: Are 'unconscious patients more conscious than we think? CBC Radio, Ideas from the trenches. May 4, 2016.
Armchair philosophizing doesn’t help conscious patients in vegetative states. Stat News. February 10, 2020.
Is it ethical to forcibly withdraw ventilators from nursing home patients for reallocation to Covid-19 patients? JME Blog. April 27, 2020.
Publications
Study protocol
Weijer C, Peterson A, Webster F, Graham M, Cruse D, Fernández-Espejo D, Gofton T, Gonzalez-Lara LE, Lazosky A, Naci L, Owen AM. Ethics of neuroimaging after serious brain injury. BMC Medical Ethics 2014; 15: 41.
Decision making capacity
Peterson A, Naci L, Weijer C, Owen AM. A principled argument, but not a practical one. AJOB-Neuroscience 2013; 4(1): 52-53.
Peterson A, Naci L, Weijer C, Cruse D, Fernández-Espejo D, Graham M, Owen AM. Assessing decision making capacity in the behaviorally non-responsive patient with residual covert awareness. AJOB-Neuroscience 2013; 4(4): 3-14.
Cairncross M, Peterson A, Lazosky A, Gofton T, Weijer C. Assessing decision-making capacity in patients with communication impairments. Cambridge Quarterly of Healthcare Ethics 2016; 25(4): 691-9.
Peterson A. Should neuroscience inform judgments of decision-making capacity? Neuroethics 2018; 12(2): 133-151.
Peterson A. A critical analysis of Joseph Fins' mosaic decision making. Cambridge Quarterly of Healthcare Ethics 2019; 28(4): 725-736.
Welfare
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. An ethics of welfare for patients diagnosed as vegetative with covert awareness. AJOB-Neuroscience 2015; 6(2): 31-41.
Graham M. A fate worse than death? The well-being of patients diagnosed as vegetative with covert awareness. Ethical Theory and Moral Practice 2017; 20(5): 1005-1020.
Tung J, Speechley KN, Gofton T, Gonzalez-Lara L, Graham M, Naci L, Peterson AH, Owen AM, Weijer C. Towards the assessment of quality of life in in patients with disorders of consciousness. Quality of Life Research 2019. doi:10.1007/s11136-019-02390-8.
Families
Graham M, Weijer C, Peterson A, Naci L, Cruse D, Fernández-Espejo D, Gonzalez-Lara L, Owen AM. Acknowledging awareness: Informing families of individual research results for patients in vegetative states. Journal of Medical Ethics 2015; 41(7): 534-8.
Munce SEP, Webster F, Christian J, Gonzalez-Lara LE, Owen AM, Weijer C. Experiences of family of individuals in a locked in, minimally conscious state, or vegetative state with the health care system. Brain Injury 2021; 35(1): 8-14.
Gonzalez-Lara LE, Munce S, Christian J, Owen AM, Weijer C, Webster F. The multiplicity of caregiving burden: a qualitative analysis of families with prolonged disorders of consciousness. Brain Injury 2021; 35(2): 200-208.
Peterson A, Webster F, Gonzalez-Lara LE, Munce S, Owen AM, Weijer C. Caregiver reactions to neuroimaging evidence of covert consciousness in patients with severe brain injury: a qualitative interview study. BMC Medical Ethics 2021; 22(1): 105.
Acute brain injury
Weijer C, Bruni T, Gofton T, Young GB, Norton L, Peterson A, Owen AM. Ethical considerations in functional magnetic resonance imaging research in acutely comatose patients. Brain 2016; 139(Pt 1): 292-9.
Bruni T, Graham M, Norton L, Gofton T, Owen AM, Weijer C. Informed consent for functional MRI research on comatose patients following severe brain injury: balancing the social benefits of research against patient autonomy. Journal of Medical Ethics 2019; 45(5): 299-303.
Other
Peterson A, Norton L, Naci L, Owen AM, Weijer C. Toward a science of brain death. AJOB 2014; 14(8): 29-31.
Peterson A, Cruse D, Naci L, Weijer C, Owen AM. Risk, diagnostic error, and the clinical science of consciousness. Neuroimage: Clinical 2015; 7: 588-597.
Peterson A, Bayne T. A taxonomy for disorders of consciousness that takes consciousness seriously. AJOB Neuroscience 2017; 8(3): 153-155.
Graham M, Owen AM, Çipi K, Weijer C, Naci L. Minimizing the harm of accidental awareness under general anesthesia: new perspectives from patients misdiagnosed as being in a vegetative state. Anesthesia & Analgesia 2018; 126(3): 1073-1076.
Graham M, Owen AM, Weijer C, Naci L. Using neuroimaging to uncover awareness in brain-injured and anesthetized patients. Frontiers in Bioscience 2018; 10: 337–349.
Peterson A, Bayne T. Post-comatose disorders of consciousness. Routledge Companion to Consciousness (RJ Gennaro, ed.). Abingdon, UK: Routledge, 2018.
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. 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. July 2013.
Graham M, Weijer C, Peterson A, Naci L, Fernandez-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. (Oral presentation). Brain Matters 4: Brain Science and Social Responsibility. Vancouver. March 2014.
Weijer C, Peterson A, Naci L, Graham M, Cruse D, Fernandez- 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 presentation). Brain Matters 4: Brain Science and Social Responsibility. Vancouver. 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. 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. 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. 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. May 2014.
Graham M, Weijer C, Peterson A, Naci L, Cruse D, Fernandez-Espejo D, Gonzalez-Lara L, Gofton T, Lazosky A, Norton L, Speechley K, Young B, Owen AM. From sentience to well-being: moral obligations to behaviourally non-responsive patients who demonstrate covert awareness. Canadian Bioethics Society Annual Meeting, Vancouver. May 28-31, 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 A, 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. May 2015.
Weijer C. Functional MRI studies in ICU patients after severe brain injury: new opportunities, new ethical challenges. (Invited 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. 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. (Oral presentation). International Neuroethics Society. Chicago, USA. October 2015.
Weijer C. Consciousness unbound: the ethics of neuroimaging after severe brain injury. Montreal Neuroethics Network Seminar. Montreal. December 3, 2015.
Webster F, Munce S, Gonzalez-Lara LE, Christian J, Owen A, Weijer C. Epistemic privilege: narratives from the families of vegetative and minimally conscious patients after serious brain injury. 11th World Congress on Brain Injury, The Hague, Netherlands: March 3-6, 2016.
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. 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. May 2016.
Stephensen M, Peterson A, Weijer C. Are organ donors really dead, or just dead enough? Reassessing the dead donor rule. (Oral Presentation). Canadian Bioethics Society. Toronto. May 2016.
Weijer C. Consciousness unbound: the ethics of neuroimaging after severe brain injury. Center for Bioethics, Harvard University. Boston, USA. October 25, 2016.
Weijer C. Philosophy engaging science. Royal Society of Canada General Meeting. Ottawa. November 19, 2016.
Weijer C. Consciousness unbound: the ethics of neuroimaging after severe brain injury. Dr. Robert Zhong Research Seminar. Western University. December 15, 2016.
Webster F, Christian J, Gonzalez-Lara LE, Munce S, Owen AM, Weijer C. Patients’ ways of knowing: narrative truth in the accounts of families of vegetative and minimally conscious patients after serious brain injury. 12th World Congress on Brain Injury, New Orleans, USA. March 29-April 1, 2017.
Gonzalez-Lara LE, Munce S, Christian J, Webster F, Owen AM, and Weijer C. The multiple roles families play, including unpaid healthcare providers, after severe brain injury. 12th World Congress on Brain Injury, New Orleans, USA. March 29-April 1, 2017.
Munce S, Christian J, Webster F, Gonzalez-Lara LE, Owen AM, Weijer C. A qualitative study on the experiences of caregivers of individuals in a locked in, minimally conscious, or vegetative state with the health care system. 12th World Congress on Brain Injury, New Orleans, USA. March 29-April 1, 2017.
Gonzalez-Lara LE, Munce S, Christian J, Webster F, Owen AM, Weijer C. The multiple roles families play, including unpaid healthcare providers, after severe brain injury. 11th Annual Canadian Neuroscience Meeting, Montreal. May 28-31, 2017.
Weijer C. Neurology, neuroimaging and neuroethics. Schulich School of Medicine Mini-Medical School. September 21, 2017.
Weijer C. Consciousness unbound: The ethics of neuroimaging after severe brain injury. Western Undergraduate Research Conference. March 24, 2018.
Weijer C. Who shall live? The use of functional MRI in the intensive care unit for prognostication after serious brain injury. Bioethics Symposium, University of Cape Town. Cape Town, South Africa. July 29, 2019.
Weijer C. Consciousness unbound: the ethics of neuroimaging in patients in a vegetative state. Philosophy Society Talk. Cape Town, South Africa. July 30, 2019.
Weijer C. Imaging in the brain injured state: ethical implications. World Congress of Neurology. Dubai, United Arab Emirates. October 29, 2019.