Guest Post by Professor Lynn Turner-Stokes
In an article published in the JME, I highlight the confusion that exists amongst many clinicians, lawyers and members of the public about decisions with withdraw life-sustaining treatments from patients in permanent vegetative and minimally conscious states.
Recent improvements in acute care for patient who have suffered catastrophic brain injury undoubtedly save lives. However, some patients who would otherwise have died now survive but remain profoundly disabled. Many patients experience a brief period of unconsciousness (or ‘coma’) lasting a few days or weeks. However, an unfortunate few with very severe brain injury remain in a vegetative and minimally conscious state (VS/MCS) for many months – or in some cases permanently.
Unfortunately the lay press, and even much of the medical literature, tends to conflate VS/MCS with coma, but they are in fact very different. Coma is a state of ‘unrousable unresponsiveness’ from which the patient cannot be awakened. It rarely persists for more than a few days or weeks, as the large majority of patients will either die or start to regain consciousness. Patients in VS or MCS are awake, but have either very limited awareness of themselves and their environment (MCS), or none at all (VS). With supportive treatment, many will live in these states for a decade or more.
Patients in VS/MCS are unable to make decisions regarding their care and treatment. The Mental Capacity Act 2005 (MCA) provides a framework for clinicians to make ‘best interests’ decisions for them, working with family members to take into account the patient’s own likely wishes, values and beliefs.
If it becomes clear that the patient will never recover consciousness or a quality of life that they would value, it is appropriate to consider whether they would wish to continue to receive life-sustaining treatments, or simply be allowed to die naturally.
Unable to eat or drink, patients in VS/MCS are typically tube-fed, and this ‘clinically assisted nutrition and hydration (CANH))’ is classified a medical treatment. If it is withdrawn, the patient will inevitably die within 2-3 weeks, and this makes decision-making particularly emotive in this area.
According to the Court of Protection (CoP) Rules, in England a decision to withdraw or withhold CANH in patients with permanent VS or MCS must be brought before the Court. But this is something of an anomaly as other equally serious best interests decisions (and indeed decisions regarding CANH in other conditions) are made every day by clinical teams in conjunction with families as a matter of good clinical practice.
Court application is a complex, lengthy and costly process. It typically takes about 9 months and costs over £120,000. Paradoxically, while the application is in process, clinical teams are sometimes required to provide further invasive treatments purely to keep patient alive long enough for the Court to pronounce that they may be allowed to die. Understandably, family members find this practice highly distressing, and many people have questioned the ethics of this approach.
Singling out of CANH withdrawal in permanent VS and MCS has also left many clinicians uncertain about what decisions they can and cannot make without reference to the Court.
In recent weeks, the Oxford Shrieval Lecture by Mr Justice Baker (“A Matter of Life and Death”, 11.10.2016) and its subsequent reporting in the public press has added further to the confusion, sparking debate on the respective roles of clinicians, the CoP and the MCA in decisions to withhold or withdraw life-sustaining treatments.
The debate became polarised and confused by mis-quotation and inaccurate terminology,
For example, the press coverage proclaimed that judges “advise that no one who is in a coma or an unconscious state should be allowed to die without the case first being considered by a court”. This is clearly nonsensical as coma is a terminal feature in very many people dying from all sorts of conditions. The debate also highlighted a lack of knowledge amongst the legal profession about how patients in VS/MCS die in the absence of Court approval.
Based on 25 years of personal experience of caring for patients with severe disorders of consciousness, my article attempts to give a more accurate representation of the facts. In the spirit of transparency, I also present a case review of the patients in VS/MCS who have died under my care during the last 10 years. The majority of patients died from chest infections, but the series demonstrates that this group of patients often have complex medical conditions and a wide range of co-morbidities that contribute to their shortened life expectancy. Four patients had an end of life palliative care programme that included CANH withdrawal, only one of whom had been through a Court application. Two had irreversible abdominal pathology that made it impossible to give CANH and one was in coma, which falls outside the stipulated requirement for application to the Court.
These data from real-life clinical practice demonstrate that clinicians regularly undertake best interests decision-making in conjunction with families that may include life and death decisions (sometimes even the withdrawal or withholding of CANH); and that these can be made within the current legal framework without necessarily involving the court in all cases. This is the first published case series of its kind.
Professor Turner-Stokes is a senior consultant in rehabilitation medicine at Northwick Park Hospital and King’s College London. She is one of the country’s leading specialists in this area and is lead author for the Royal College of Physicians’ National Clinical Guidelines on Prolonged Disorders of Consciousness.