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The ethics of life and death


A major European study conducted by the Coma Science Group (ULg, The University Hospital of Liege) shows that within the medical community, opinions about end-of-life decisions for patients who are in a chronic vegetative or minimally conscious state are influenced by whether or not these patients are believed to be able to feel physical pain. The study was published in the Journal Neuroethics.

The ethical debate surrounding altered states of consciousness is far from over. The debate is all the more delicate in view of the fact that several studies undertaken over the last few years have shown that one in three or even two in five “bedside” clinical diagnoses were erroneous. Thus, some people are declared to be in what is known in today’s terminology as a vegetative state although they are in a minimally conscious state or even in locked-in syndrome (see Immured in a motionless body). Yet, in a minimally conscious state, the patient shows clear signs of consciousness even though these may fluctuate and in locked-in syndrome, their consciousness remains intact in a despairingly motionless body. Moreover, a study conducted by the Coma Science Group of the Cyclotron Research Centre (CRC) of the University of Liege and the Neurology department of the University Hospital of Liege (published in 2008 in The Lancet Neurology (1)) showed that, in contrast with patients who are in a vegetative/non-responsive state, patients who are in a minimally conscious state are capable of feeling pain and emotions; it is therefore necessary to supply them with analgesic medication.

EN-conscienceminimaleThe definition of standardized clinical tools is likely to reduce the incidence of misdiagnosis. The Coma Recovery Scale-Revised – CRS-R, developed in the US by Joseph Giacino’s team at the New Jersey Neuroscience Institute, and validated in French and Dutch by Caroline Schnakers, a postdoctoral researcher at the FNRS, and Professor Steven Laureys, director of the Coma Science Group, pursues this objective. In Belgium, the FPS Public Health imposes its use from now on in all Belgian centres treating patients who have serious brain injury. The work of the Coma Science Group has also made possible the design of a standardized pain assessment scale: the Nociception Coma Scale-Revised.

Diagnosis can be further refined by the use of functional imaging techniques which calls for the design of an easy-to-use, low-cost tool. A lot of work has been done to this end, particularly with the use of the electroencephalogram (EEG) technique and cognitive evoked potentials. The use of functional magnetic resonance imaging (FMRI) and PET scans (see Positron Emission Tomography) in the “resting state” where the subject is awake, with his eyes closed and does not perform any tasks, is also promising.

However, diagnosis of severe brain damage is sometimes a grey area; all the indications are that altered states of consciousness, far from being black and white, are part of a continuum. The ethical debate relative to pain and the end-of-life of patients who are severely brain-damaged exists in itself, independently of the fear of making a diagnostic or prognostic error.

A conflict of opinions that raises some questions

In 2011, we released the first results of a major survey conducted between September 2007 and October 2009 among more than 2000 European health professionals – around two-thirds of these were doctors and a third were members of the paramedical sector. At the end of each conference or scientific congress which took part during this period, Steven Laureys asked the participants to answer a series of questions which were then analyzed by Doctor Athena Demertzi, a neuropsychologist and member of his team. “At first, the individuals questioned received detailed information about these particular altered states of consciousness, which we wrote about in 2011 (see article: The ethics of death). They were then requested to answer yes or no to the questions asked. To ensure a more precise interpretation of the results, five demographic details were gathered for each participant: age, sex, nationality (32 countries spread across 3 geographical zones- Northern, Central and Southern Europe), profession and religious beliefs or more exactly whether they believed in God or not and adhered to an institutionalized religion (Christianity, Islam, Judaism…) without necessarily practicing”.

Published in the Journal of Neurology(2), the results which we already knew from 2011 taught us that 66% of the individuals questioned, adjudged that it was acceptable to stop treatment (artificial nutrition and hydration) for patients in a chronically vegetative state, that is to say those patients who were in this state for more than one year and hence considered chronic. However, only 28% of them thought that this measure was justified when it concerned patients who were in a chronic minimally conscious state.

scanTwo other questions concerned what patients would like to be done to them if they were themselves in a chronically vegetative or minimally conscious state. In the first case (VS), only 18% of the people asked (19% of doctors and 12% of paramedical personnel) would like to be kept alive and, in the second case (MCS), 33% (35% of doctors and 24% of paramedical personnel). The work of Athena Demertzi therefore revealed a conflict between how health professionals would like to be treated and what they would recommend for others. This certainly raises a lot of questions. According to Steven Laureys, fear of litigation and reservations linked to the irreversibility of death probably go a long way towards explaining these statistics. As far as he is concerned, the medical authorities should redress this imbalance. “It is neither moral nor ethical to deny to others rights that we grant to ourselves”, he points out.

What did the last two questions that were analysed in 2011 reveal? Firstly, that 80% of the individuals questioned felt that it would be worse for a family to have one of its members in a vegetative state than to be dead, also, 55% of the sample considered that it would be better to die than to survive in this unconscious state. These percentages are easy to understand to the extent that, when deprived of consciousness, the patient in a vegetative state does not suffer like his family. Secondly: if we put ourselves in the place of the patient, the minimally conscious state is worse than the vegetative state in the eyes of 54% of the individuals in the sample; however, if we put ourselves in the place of the family, this opinion is only shared by 42% of the individuals questioned. “Some families content themselves with some signs of residual consciousness such as a smile given to a mother or father”, Steven Laureys offers as an explanation for these figures.

The opinions of health professionals with regard to the cessation of treatment given to ensure the survival of brain-damaged patients differ greatly between the North and South of Europe. Due to stronger religious beliefs, the countries of Southern Europe are much more reluctant to accept this issue. It was also established that men were more in favor of cessation of treatment than women and that the older the individual, the less inclined they were to be in favor.

Pain and end-of life

In January 2012, other results analysed by Athena Demertzi with collaboration with Pr. Eric Racine (McGill University and University of Montreal) were published in the journal Neuroethics (3), as well as in the researcher’s doctoral thesis: Ain't no rest for the brain. Neuroimaging and Neuroethics in dialogue for patients with disorders of consciousness. They dealt with questions relative to the issue of pain in patients with altered states of consciousness and the impact that opinions offered on this subject can have on end-of-life decisions.
First assessment: A majority of health professionals (56%) consider that patients in a vegetative state can feel pain. One of the factors that might explain this belief is the fact that there is some confusion between this state and the minimally conscious state, and all the more so because there was no distinction between the two states before the work of Joseph Giacino (2002). There is less controversy surrounding the minimally conscious state as behavioral data or data obtained by neuroimaging techniques has shown that patient’s brains react quite normally to nociceptive stimuli.

It was essential to determine to what extent the opinions relative to pain perception influenced the decision to cease artificial nutrition and hydration of patients in a vegetative or minimally conscious state. What did the statistics reveal? Among those health professionals persuaded that the vegetative state does not involve pain, a large majority (77%) was in favor of stopping life-maintenance treatment. This figure dropped to 59% among the group of professionals who were convinced of the sensitivity of the patients concerned to nociceptive stimuli. For the chronic minimally conscious state, willingness to stop treatment was much less as the figures were 38% and 29% respectively.

A general trend can therefore be established: the greater reluctance to “let the patient go” if he is adjudged to be capable of feeling pain. How can this strong surge of opinion be explained? It is still a matter of conjecture. One theory is that the ability to feel pain is associated with a more general sign of consciousness of the environment.

A double influence

By further analyzing the answers to the sample, Athena Demertzi demonstrates that profession and the fact of being a believer (without necessarily practicing) influenced the participants in the survey. Therefore, the non-believers in the sample show themselves to be much more favorable to cessation of treatment than believers regardless of whether the patient is believed to feel pain or not. Indeed, for the vegetative state, 69% of the non-believers believe it is appropriate to stop artificial nutrition and hydration when they think that the patient can feel pain and 86% when they think the opposite, while the figures for believers are 52% and 71% respectively. For the minimally conscious state, the percentages are low but the difference remains, 38% of the non-believers are in favor of stopping treatment if the patient feels pain, against 22% of believers. If the patient is adjudged to be incapable of nociceptive perceptions, the figures are 40% and 33% respectively.

In addition, members of the paramedical sector are more inclined to advocate stopping treatment for patients deemed to feel pain than doctors are (64% and 33% against 56% and 27%). “Several theories can explain this assessment, such as the nature of the training received and sensitivity, the fact that paramedical staffs are closer to the patients and spend more time at their bedside seems to play a major role nonetheless,” says Athena Demertzi. However, profession has virtually no effect on decisions concerning the end-of-life of patients that are believed to be free from pain.

Biopsychosocial model

Overall, the results of the survey highlight the fact that end-of-life decisions for patients who are in an altered state of consciousness are often rooted in uncertainty because they can be dictated, at least to a degree, by religious beliefs or the education that the health professionals concerned have received. “We would prefer if these decisions were based more on medical evidence”, indicates Steven Laureys. In order to contribute to the achievement of this objective, better information on the part of the treating professionals is necessary concerning the distinction between the vegetative and minimally conscious states. With regard to the importance attributed to the notion of pain by health professionals in opinions about end-of-life decisions, it seems vital to refine diagnosis relating to nociceptive feeling by patients. A scale such as the Nociception Coma Scale-Revised contributes to this. The FMRI scan in resting state will also make a valuable contribution as exemplified in work currently being undertaken by Athena Demertzi within the Coma Science Group, which shows a correlation between the Nociception Coma Scale and the activity of the pain network in resting conditions (i.e., in the absence of external stimulus).

However, in the areas of pain and consciousness, the dichotomous approach to brain-damaged patients must be abandoned and it must be acknowledged that we are faced with a spectrum characterized by progressive transitions. Studies carried out to date have been group studies. Moreover, the technique does not guarantee that there will be no erroneous results at an individual level - "false positives" or "false negatives", explains Steven Laureys. 

EN-BPS_approachThe challenge at the moment is to define a decision tree which would be the result of a multidisciplinary and multimodal approach. Athena Demertzi is working towards the design of this approach in the context of her postdoctoral project at the FNRS. Indeed, she is working on the design of a biopsychological model of pain and emotions (positive and negative) in patients in a state of altered consciousness. Three main aspects need to be combined: the “bio” aspect, which is made up essentially of all the data supplied by neuroimaging and electrophysiology; the “psycho” aspect, underpinned by psychcognitive, behavioral and emotional data gathered during clinical examinations (notably thanks to the implementation of appropriate scales such as the Nociception Coma Scale-Revised and the coma recovery scale); the “social” aspect, principally centred on the way the family and the treating personnel perceive the situation.

In a recent article published in Lancet Neurology(4), Steven Laureys and his colleagues on the other side of the Atlantic consider that the integration of all the data gathered from the three areas should lead to a better treatment of the patients (among other things we should consider the treatment of pain) and facilitate end-of-life decisions. This requires an improvement of knowledge in all the areas mentioned. Therefore how can we quantify the residual well-being of the patient? How can we better determine the functional neuroanatomy of pain? How can we achieve a fine understanding of the socio-medical reality? This is a huge challenge especially when it concerns individuals who are suspended between life and death.

(1) M. Boly, M.-E. Faymonville, C. Schnakers, Ph. Peigneux, B. Lambermont, C. Phillips, P. Lancellotti, A. Luxen, M. Lamy, G. Moonen, P. Maquet et S. Laureys, Perception of pain in the minimally conscious state with PET activation : an observational study, in The Lancet Neurology, 2008.

(2) A. Demertzi, D. Ledoux, M.-A. Bruno, A. Vanhaudenhuyse, O. Gosseries, A. Soddu, C. Schnakers, G. Moonen, S. Laureys, Attitudes towards end-of—life issues in disorders of consciousness : a European survey, J. Neurol, 2011.

(3) A. Demertzi, E. Racine, M.-A. Bruno, D. Ledoux, O. Gosseries, A. Vanhaudenhuyse, M. Thonnard, A. Soddu, G. Moonen, S. Laureys, Pain Perception in Disorders of Consciousness: Neuroscience (2012), Clinical Care, and Ethics in Dialogue, Neuroethics, 1-14.

(4) Jox RJ, Bernat JL, Laureys S, Racine E., Aug;11(8):732-8. Disorders of consciousness: responding to requests for novel diagnostic and therapeutic interventions (2012), Lancet Neurology, Aug;11(8):732-8.

© Université de Liège - - September 22, 2020