The Council of State listens today, Friday, June 20, to the Rapporteur’s conclusions and counsel’s arguments on Vincent Lambert. Contributions by the National Academy of Medicine, the National Council of the College of Physicians, the National Ethics Advisory Committee and Jean Leonetti were given to the magistrates. Each in their register and in their field of expertise, these cautious prescribers recalled that Vincent Lambert is “unable to speak [but] is not at the end of his life” (CCNE) and that “the ending of life in response to voluntary euthanasia when life itself is not irretrievable or is not immediately threatened cannot be considered a medical act” (ANM) because “sustaining life remains the fundamental goal of medicine”(John Leonetti). The State Council will therefore pronounce its decision imminently. In the meantime, Gènéthique explores the care of patients in a persistent vegetative state through an interview with Professor Steven Laureys, a Belgian neurologist and co-author of a recent and exciting study 2.
Gènéthique: As a neurologist and a specialist in post-traumatic states, who are patients you encounter every day?
Prof. Steven Laureys: After trauma, some patients fall into a coma. They can no longer be “aroused” even if they are stimulated. Two main scenarios are possible: the situation quickly improves and the patient recovers with some after effects, and through appropriate management, recovers more or less, or the situation deteriorates very quickly towards brain death.
G.: Let us focus on the first scenario. Can you describe those patients who recover consciousness, but are sometimes terribly called “vegetables”?
Prof. SL: Some patients will recover and develop into a vegetative state. There is now discussion of non-respondent awakening. These are patients who open their eyes, wake up, move and breathe spontaneously, but all movements are reflexes. Some will then evolve into what is called a minimally conscious state. The more or less minimally conscious states must be differentiated. In the first case, for example, the patient will smile at his mother or follow her gaze. In the next step of the minimally conscious state, the patient responds to a command. You ask him to “squeeze my hand“, he will do it, but he cannot establish communication. Some will recover functional communication, which gives them considerable autonomy. The non-response vegetative state, or minimally conscious state, may be chronic, lasting for months, years or even decades.
G.: In this phase where communication has broken down, how are the subtle and limited diagnoses made when the decisions of relatives and doctors are irreversible, as seen in Belgium?
Prof. SL: No decision can be fair, ethically and medically correct if it is built on weak foundations. Diagnosis and prognosis must be well documented, and the public educated about these states and the realities they represent. Beyond the right to life and the right to die, the reality is more nuanced and should focus on the right to quality of life. It has been demonstrated through functional neuroimaging, and we were the first to do so, that those patients in a minimally conscious state, or as you say in France, pauci-relational state, perceive emotions, including negative emotions, such as pain. They must be treated, given analgesics, and palliative care and innovation should be developed.
G.: Exactly, what hopes do you have for “brain-computer interfaces”?
Prof. SL: There is, for example, an electro-encephalogram that communicates via pupillary dilation – electromyography – which is based on small muscle movements that are invisible to the eye. This gives a “voice” to a minority of patients. The challenge is to determine whether the minimally conscious state causes suffering or if emotions and moments of pleasure still prevail. And this may be surprising. For example, in our study of Locked in Syndrome (patients with a brainstem lesion awaken from a coma who are completely paralysed, but fully conscious), we interviewed patients who could not be more physically disabled, but the majority said that they were happy. A minority, and it would be unbearable to ignore them, wished to end their suffering.
G.: In your study you deplore the management of these patients. Is this not an aggravating factor?
Prof. S. L.: The first challenge is to reduce diagnostic errors: 30 % to 40 % of those diagnosed as in a vegetative state actually retain conscious perception2. The consequences are significant: 70 % of deaths reported in six Canadian Level I trauma centres could be attributed to the withdrawal of life maintenance therapy2. The second challenge is to give rehabilitation a chance. In France, there are areas where it is difficult to find a rehabilitation centre, and as a consequence, the patients and their families suffer enormously.
Prof. S. L.: Thanks to modern medicine, we can replace the function of each organ: your heart, your lungs, but for the brain, we do not yet have many means. We must first put the body in the best conditions for the brain to recover: We now know that this plasticity, the brain’s ability to recover, may be years after the accident. This process must be better understood to offer treatment. The only drug that has been proven to be beneficial is amantadine. Unfortunately, the pharmaceutical industry is reluctant to invest in new drugs because research is expensive and currently implemented by universities. The issue is too important to be ignored. On the non-pharmacological side, we recently published in the journal Neurologic, a process stimulating the brain electrically: electrodes are placed on the head and a continuous current is installed. Result: for half the patients in a minimally conscious state, 40 to 50 % showed some improvement. This is an interesting area, but we need the means to explore it.
G.: Do you feel isolated or do you see any competition on the subject?
Prof. S. L.: I feel less isolated that in the 90s. Media exposure of some cases has had influence. Efforts to translate knowledge from the laboratory to hospitals and clinical application must continue, keeping in mind that it is impossible to oversimplify: the brain is complex and the situations of these patients are also. Identification of the minimally conscious state has allowed the establishment of documented diagnoses and prognoses and the identification of treatment options. New technologies will certainly reduce the field of uncertainty surrounding the recovery capabilities of patients who survive their coma.
G.: Michael Schumacher awoke from his coma and has returned home.
Prof. S. L.: Yes, the only good thing about this kind of tragedy is that the media are interested in these VIP patients. But there are hundreds like Schumacher of whom we speak very little.
G.: The French Council of State will give its opinion on the situation of Vincent Lambert in the days to come.
Prof. S. L.: I know the case very well, but I think that it should not be discussed publicly. These are tragedies where both parties act out of love. I can see both their points of view, which are not always opposing. What is central is the well-being of their loved one. I am working to ensure the best possible care.