Healthcare staff looking after people in a coma or vegetative state have been issued new guidelines to help them decide on the best course of treatment.
The guidelines, which are also intended for families, set out how doctors diagnose prolonged disorders of consciousness (PDOC), which include coma, vegetative state (VS) and minimally conscious state (MCS).
They offer advice on end-of-life care, including holding difficult discussions with families on when treatment should be withdrawn from a loved one.
A question and answer section helps doctors discuss withdrawing food and drink from patients, which leads to the body shutting down and people ultimately dying of organ failure caused by dehydration.
This process can take two or three weeks, which can be very distressing for families, especially as patients sometimes show reflexes including increased movement, sweating or groaning.
The guidance, launched by the Royal College of Physicians, makes clear that decisions about care planning and end-of-life management are “ultimately made by the responsible senior clinician on the basis of the patient’s best interests”.
However, it urges medics to seek the opinions of the family and other loved ones when deciding on the best course of action.
In any case where food and drink is to be withdrawn, a decision must be made by a judge of the Court of Protection.
Prolonged disorders of consciousness are usually caused by a sudden brain injury, though they can also occur in later stages of dementia and other neurodegenerative disorders. They are defined as lasting more than four weeks.
The guidance sets out the criteria for diagnosing a coma, which includes the patient not responding to painful stimuli, light or sound, and lacking a normal sleep-wake cycle.
Patients in a vegetative state are said to be in a state of wakefulness but with a “complete absence of behavioural evidence for self or environmental awareness”.
Meanwhile, those in a minimally conscious state show signs of self or environmental awareness. They show inconsistent - but reproducible - responses which indicate some degree of interaction with their surroundings.
There are examples of behaviour for each state, such as somebody in a minimally conscious state laughing, crying or smiling in response to emotional stimuli.
On the other hand, for somebody in a vegetative state, there is no evidence of awareness of self or environment, or the ability to interact with others.
The guidelines also recommend a new national registry for patients - at present there are no figures on the number of patients with disorders of consciousness in England and Wales.
Professor Lynne Turner-Stokes, a consultant in rehabilitation medicine at Northwick Park Hospital in London, said: “The guidelines address some highly emotive and topical areas in which there is currently a dearth of formal research-based evidence to guide practice.
“In this rapidly-changing field the recommendations are likely to need updating as new evidence emerges and as international consensus develops.
“In the meantime, we have aimed to provide a practical and useful source of advice for clinicians who work with this complex group of patients.”
Derick Wade, professor of neurological rehabilitation at University College London, and co-chair, said: “This guideline is much more than an update on the previous guideline on the vegetative state.
“It has the potential to improve dramatically the experience of care and treatment as seen by both patients and families, and also to improve significantly the outcome for patients, and thus for society.”
Professor Jenny Kitzinger, co-director of the Cardiff-York Chronic Disorders of Consciousness Research Centre, said: “The new guidelines have been informed by in-depth research into family experiences which highlighted the need for clarity about the role of families in decision-making.
“The guidelines provide clear summaries of the legal situation and, I hope, will help family members to represent the wishes of their relative, and ensure clinicians gather this information, and take it into account, when making ‘best interests’ decisions about vegetative and minimally conscious patients.”
Simon Chapman, director of public and parliamentary engagement at the National Council for Palliative Care, added: “We welcome the publication of these new guidelines by the Royal College of Physicians, and very much hope they make a real contribution to clear and informed decision-making in this extraordinarily difficult and sensitive area of care.”
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