BMA guidelines on treatment decisions for patients in persistent vegetative state
Revised December 2006
Background
Persistent vegetative state (PVS) began to attract attention in the UK in the 1990s. In 1992-3, the first high profile PVS legal case, that of Tony Bland, progressed through the courts up to the House of Lords.[reference 1] As is discussed below, the Bland case attracted considerable attention and established the current legal criteria in England, Wales and Northern Ireland for decisions about the withdrawal of life-prolonging treatment from such patients. It was followed in 1996 by the Law Hospital case in Scotland, described below.
Prior to the 1990s, there was little debate about PVS. Experts agreed that the condition was poorly understood. In 1992, the BMA produced a 26-page consultation paper on the subject [reference 2] which was circulated widely and used as a resource in the Bland case. Among other things, the BMA paper highlighted the risk of a PVS diagnosis being made prematurely or on insufficient evidence. It emphasised that any lack of rigour in excluding other conditions carried serious dangers for patients: the main danger being that once assumed to be in an irrecoverable condition, such patients may face the removal of life-sustaining treatment, including artificial nutrition and hydration. The risk of premature diagnosis without other factors having been investigated was illustrated in the United States by some cases in which patients, deemed to be in PVS, recovered some functioning. Such was the case of 86-year old Carrie Coons who having been diagnosed as a PVS patient, regained sentience in April 1989 after a court had agreed that her feeding tube could be removed. Cases such as hers drew attention to the need to carry out far more exhaustive testing prior to categorising any patient as being in PVS.
1989 case of misdiagnosis
Carrie Coons, an 86-year old American was unconscious for four and a half months and diagnosed as being in PVS. Her gerontologist’s request for tests to eliminate other factors which might have caused her condition was refused by the patient’s family. Her relatives applied to court for feeding to be withdrawn. Although the diagnosis had been made without corroboration by a neurologist, the New York court agreed that her artificial nutrition should cease. The patient unexpectedly regained consciousness, however, after aggressive efforts by nurses to stimulate her.
Terminology
Variations in terminology occur but BMA guidance refers to the "persistent vegetative state": "persistent" indicates that the condition is a continuing one. The BMA has resisted the term "permanent" vegetative state although it agrees that the condition should be seen as irrecoverable once all preliminary diagnostic steps (see below) have been taken and other factors eliminated.
In 1996, the Royal College of Physicians (RCP) issued initial guidance, distinguishing between "continuing vegetative state" and "permanent vegetative state". The former was said to apply to patients prior to confirmation of the permanence of the condition. In 2003, the RCP published new guidance [reference 3] which pointed out that the label "permanent vegetative state" represents a prediction that the patient will definitely never recover awareness. It noted that such a prediction cannot be made with absolute certainty although the likelihood of recovery significantly diminishes with time.
Debate about the diagnosis and the possibility of recovery from it arose in 2006 when several highly publicised cases appeared to indicate that patients diagnosed as in PVS actually could regain awareness. In Autumn 2006, trials on the use of zolpidem – a common ingredient in sleeping pills – were due to start in South Africa, involving such patients with severe brain injuries. This followed report [reference 4] that the drug appeared to temporarily stimulate the brain cells of patients previously thought to be in an irreversible vegetative state. The BMA continues to monitor such reports and awaits the findings of the study. In the meantime, the Association continues to stress the importance of trying all appropriate diagnostic tests prior to categorising any patient as being in PVS.
Criteria for PVS diagnosis
The persistent vegetative state presents particular medical, ethical and legal dilemmas because of the extreme nature of the condition, the difficulties associated with diagnosing it accurately and the risks of premature diagnosis. It results from severe damage to the cerebral cortex, resulting in destruction of tissue in the thinking, feeling part of the brain. Patients appear awake but show no psychologically meaningful responses to stimuli and it is common for cerebral atrophy to occur. The condition is distinguished from a state of low awareness and the minimally conscious state (MCS) where patients show minimal but definite evidence of consciousness despite profound cognitive impairment. MCS patients, for example, may demonstrate eye movement to direct stimuli, even though their reactions may be inconsistent. Patients in the “locked-in syndrome” retain cognitive functioning but are unable to communicate other than by purposeful eye movement. Their condition disrupts the patient’s ability to control the body’s movements, effectively paralysing the patient.
Diagnosis
Although current methods of diagnosing PVS cannot be regarded as infallible, the 2003 RCP document includes a useful checklist for diagnosis. Steps must first be taken to eliminate other possibilities and clinicians must be aware of the dangers of prematurely diagnosing the patient's condition. Although it is impossible to make a confident diagnosis in all suspected PVS cases, new technologies can be helpful in some. New brain-imaging methods appear to offer the potential for identifying some patients who should not be categorised as being in PVS.
In July 2005, a 23-year old patient remained unresponsive but with sleep-wake cycles after suffering severe traumatic brain injury in a road accident. She was judged to fulfil the criteria for the vegetative state. Five months after the accident, functional magnetic resonance imaging was used to record the patient’s neural responses and her brain’s ability to process language when she was spoken to. In a subsequent experiment, the patient was asked to imagine visiting rooms in her house or playing tennis. The brain activation patterns that were observed matched those of conscious control subjects. This indicated that despite the patient’s apparent unresponsiveness to visual or auditory stimuli and lack of purposeful actions, she had retained the ability to process language and perform mental imagery tasks. The patient was not seen as typical, however, of the vegetative state, not least because she had suffered far fewer cerebral brain lesions. [reference 5]
The RCP set out steps to be taken prior to diagnosis and diagnostic criteria:
- Establish cause of the condition
- Persisting effect of anaesthesia or drugs must be excluded
- Possibility of metabolic disturbance investigated
- Possibility of treatable structural cause should be excluded by brain imaging.
- No evidence of awareness of self or environment.
- No response to visual, auditory, tactile or other stimuli suggesting conscious purpose.
- No use of language comprehension or meaningful expression.
- An apparent sleep-wake cycle.
- Hypothalamic and brainstem function continue, ensuring respiration and circulation.
Misdiagnosis
Since 1989, an enduring cause for concern has been the risk of misdiagnosis and the RCP document cites studies providing evidence of such errors. In the BMA’s view, reports of alleged "recovery" from PVS are likely to indicate an original misdiagnosis. Nevertheless, the BMA continues to keep the evidence of recoveries under review.
Initial assessment and treatment
A PVS diagnosis takes time. During the period of initial assessment, it is appropriate to provide aggressive medical treatment. The BMA believes that it is vital that stimulation and rehabilitation should be available for patients suspected of being in PVS as soon as their condition is stabilised. Clinicians should give active consideration to the wide range of specific measures which might effect some improvement in each individual case. Even if few patients improve as a result of being included in coma arousal programmes, the appropriateness of this and other options for each individual must be explored at an early stage. It is for clinical judgement to decide as to the most appropriate measures and the length of time they should be pursued.
High quality nursing care is needed to minimise the risks of complications. It is good medical practice to provide artificial nutrition and hydration to sustain any patient whose prognosis is uncertain. Medical treatments, including artificial nutrition and hydration, may be withdrawn at a later stage, after legal review of the case, if they are considered futile.
The BMA has consistently recommended that the diagnosis of irreversible PVS should not be considered confirmed (and therefore treatment not be withdrawn) until the patient has been insentient for at least 12 months. The Association recognises, however, that distinction can be drawn between different categories of PVS patient depending on factors such as the patient's age and the manner in which the damage to the brain occurred. For some categories, PVS can be diagnosed with considerable certainty within three months. Nevertheless, as an essential safety net the BMA recommends that decisions to withdraw treatment should only be considered when the patient has been insentient for 12 months.
The diagnosing clinician should also seek views from two other doctors, one of whom should be a neurologist. They should undertake their clinical assessments separately. In any case of doubt as to whether the patient's condition is irreversible, decisions about possible withdrawal of medical treatment must be deferred.
Review of treatment options
A high standard of nursing care, good nutrition and stimulation should be available to all unconscious patients. Rehabilitative measures should be continued until clinicians consider such measures can no longer benefit the individual patient. Specialised expertise should be sought to clarify this in each case.
If it is apparent at the end of the one-year period that the patient's condition is irreversible, consideration may be given to withdrawal of treatment. The BMA has published specific guidance on withdrawing and withholding life-prolonging treatment. [reference 6] Such decisions for PVS patients should be based on the same principles as other patients. Factors include a careful evaluation of all the evidence regarding the patient's diagnosis and prognosis, involvement of an independent specialist opinion, consideration of the anticipated benefits or burdens of the treatment, the patient's views if known and sensitive discussion with people close to the patient. In some cases, doctors may then recommend the withdrawal of all treatment including artificial nutrition and hydration. In England and Wales, an application must be first made to the courts. For specific advice, doctors can contact the Office of the Official Solicitor. Northern Ireland has its own Official Solicitor. In Scotland, the Mental Welfare Commission can provide advice.
The views of the patient
Treatment decisions for incompetent patients must be based on an assessment of the patient's best interests which includes careful consideration of the patient's former views. These views may be ascertained through patients' relatives or, in some cases, may have been recorded in an advance statement.
The views of people close to the patient
It is good practice for the doctors to consult the wishes of people close to the patient although their views alone do not necessarily determine treatment. Relatives need time to accept and understand the prognosis. A decision to withhold life-prolonging treatment, such as artificial feeding, requires the cooperation of those emotionally close to the patient and those who provide the nursing care.
Views of health professionals
Decisions to withdraw life-prolonging treatment should be deferred if there is disagreement within the health team about the diagnosis or prognosis. Nurses must be consulted since they have particular expertise and close contact with patients and their families. It must be recognised that decisions to withdraw artificial nutrition and hydration from a PVS patient impose particular burdens on nursing staff.
Conscientious objection
Any health professionals opposing the withdrawal of treatment on moral rather than clinical grounds, should not be marginalised or asked to act contrary to their conscience. They can be transferred to other duties. In some cases, the patient may be moved.
The legal position
The legal position in England and Wales was clarified by the House of Lords in the Bland [reference 7] case. This is likely to represent the law in Northern Ireland in the absence of any specific case law. The Lords confirmed the acceptability of life prolonging treatment being withdrawn in some circumstances.
Bland case
17-year old Tony Bland was injured and the oxygen supply to his brain was interrupted in the Hillsborough football stadium tragedy in April 1989. He suffered irreversible brain damage and was diagnosed as being in PVS. Bland lacked cognitive function but breathed unaided. Unable to swallow, he was fed artificially by nasogastric tube. In 1992, an application was made to the court for a declaration that it would be lawful to discontinue artificial nutrition and hydration. The case went to the House of Lords which held that artificial feeding was a medical treatment that could be withdrawn along with other medical treatments that could no longer benefit the patient.
In Scotland, the Law Hospital [reference 8] case of 1996 laid down a procedure whereby authority can be obtained from the Court of Session for the withdrawal of life sustaining treatment from patients who are diagnosed as having been in PVS for at least 12 months. Either the hospital authorities or relatives can initiate a Petition to the court. It was made clear in the Law case that, in contrast to Bland, the court does not require each future PVS case to come before it before treatment is withdrawn. The decision whether to seek court authority must rest with those responsible for the patient's treatment, taking into account the relatives' views. It is expected, however, that difficult or exceptional cases will be brought before the court. Although court authority is not obligatory, the Lord Advocate has made clear that in Scotland anyone involved with withdrawal of treatment carried out with the authority of the court will be immune from prosecution.
Pregnant PVS patients
The BMA recommends that no decision to withdraw treatment should be made within the first 12 months, thus the question of whether it is morally appropriate to keep a pregnant woman alive for the sake of her foetus alone does not arise. Each case must be considered on its merits, bearing in mind the known wishes of the patient and the benefits, drawbacks or invasiveness of the treatment options. In the BMA's view, all things being equal coma arousal and other rehabilitative procedures should be equally available to pregnant comatose women as to other patients.
Post mortem examinations
It has sometimes been suggested that post mortems should routinely be carried out following the death of all patients diagnosed as having been in PVS in order to audit the accuracy of the diagnosis. Such a procedure could provide potentially helpful information if it could be shown that PVS can be definitely confirmed after death. The BMA has separate advice relating to the authorisation of post-mortem examinations and retention of human tissue. [reference 9]
For further information about these guidelines, BMA members may contact:
askBMA on 0870 60 60 828 or
British Medical Association, Department of Medical Ethics,
BMA House, Tavistock Square, London WC1H 9JP
Tel: 020 7383 6286 | Fax: 020 7383 6233 | Email: ethics@bma.org.uk
Non-members may contact:
British Medical Association, Public Affairs Department,
BMA House, Tavistock Square, London WC1H 9JP
Tel: 020 7383 6603 | Fax: 020 7383 6403 | Email: info.public@bma.org.uk
References
- Airedale NHS Trust v Bland [1993] A.C. 789.
- BMA, Medical Ethics Committee, September 1992, Discussion paper on treatment of patients in persistent vegetative state.
- Royal College of Physicians, The Vegetative State: guidance on Diagnosis and Management, 2003.
- Boggan S, “Reborn”, The Guardian 12.09.2006.
- Owen et al, Science 313, 1402, 2006.
- BMA Withdrawing & withholding life prolonging medical treatment, 2nd edtn 2001, 3rd edtn due April 2007.
- Airedale NHS Trust v Bland [1993] A.C. 789.
- Law Hospital v The Lord Advocate and Others, April 1996.
- BMA, Human Tissue Legislation - guidance from the BMA, 2006.
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