A Canadian man who was believed to have been in a vegetative state for more than a decade, has been able to tell scientists that he is not in any pain. It's the first time an uncommunicative, severely brain-injured patient has been able to give answers clinically relevant to their care. Scott Routley, 39, was asked questions while having his brain activity scanned in an fMRI machine. His doctor says the discovery means medical textbooks will need rewriting. Vegetative patients emerge from a coma into a condition where they have periods awake, with their eyes open, but have no perception of themselves or the outside world.
A woman left with irreversible brain damage and diagnosed as being in a permanent vegetative state is to be allowed to die with dignity after a judge dismissed reports by two “shocked” therapy assistants that she may have repeatedly whispered the word "die". Mr Justice Roderic Wood, sitting in the Court of Protection in London, ruled that "J", 56, who suffered a catastrophic heart attack in September 2010, is in a permanent vegetative state (PVS) "with no sense of awareness and no prospect of recovery".
Clinical criteria for PVS will clearly need to be revised in the light of this information. However, this research does not answer deep ethical questions about what should be done. These patients have profound brain injuries and their lives are extremely restricted. How will we evaluate their desires? What should we do if they wish to die? We will still need to do the ethical work to evaluate the implications of what they want, particularly whether they wish to live or die. This is one step towards an answer to the question of how we should care for people with severe brain injuries, but it is not the solution. Not only do we need to know what they want, we also need to know how limited medical resources should be fairly distributed and what constitutes a rational desire to die.
The Supreme Court of Canada heard the case of Toronto patient Hassan Rasouli Monday, which centres on the complex and often deeply painful issue of who should decide end-of-life care. With an aging demographic, increased life expectancy and ever more sophisticated technological interventions, these kinds of cases will almost certainly become more frequent. This is a welcome chance for the country’s highest court to clarify how end-of-life treatment should proceed when a physician and a patient’s family disagree.
Respect for patient autonomy and the right of individuals to make their own healthcare decisions where possible lies at the core of the recent Mental Capacity Act 2005. The Act gives statutory authority to “Advance Decisions” (ADs) – enabling people to communicate their healthcare decisions in advance of losing the capacity to do so (e.g. due to coma or dementia). This is increasingly important when new medical technologies mean it is now possible keep people alive for years or for decades in permanent vegetative or minimally conscious states (i.e. with no – or virtually no – awareness of themselves or their environment).
National clinical guidelines on the care of people in a vegetative or minimally conscious state, following severe brain injury These long-awaited guidelines will be a major contribution to clinical and ethical standards of care for this group of patients, not only in the UK but internationally. For England and Wales, they provide much needed clarity on legal decision-making. You can buy a print copy of the guidelines (130 pp, £15) from our online shop, or download a free PDF below. The guidelines were developed by a panel of experts in the field, who have organised complicated and wide-ranging information into six coherent sections: 1 Defining criteria and terminology 2 Assessment, diagnosis and monitoring 3 Acute to longer-term management 4 Ethical and medico-legal issues 5 End-of-life issues 6 Service organisation and commissioning Each section is followed by a set of clear recommendations.