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Locked-In syndrome

Locked-In syndrome is a condition in which a patient is aware and awake, but cannot move or communicate due to complete paralysis of the body. It is the result of a brain stem stroke in which the ventral part of the brain stem is damaged. It results in quadriplegia and inability to speak in otherwise cognitively intact individuals. Those with Locked-In syndrome may be able to communicate with others by coding messages by blinking or moving their eyes, which are not affected by the paralysis. more...

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Locked-in syndrome is also known as Cerebromedullospinal Disconnection, De-Efferented State, Pseudocoma, and ventral pontine syndrome. Unlike persistent vegetative state, in which the upper portions of the brain are damaged and the lower portions are spared, locked-in syndrome is caused by damage to specific portions of the lower brain and brainstem with no damage to the upper brain.

Patients who have Locked-In Syndrome are fully aware. They will know exactly where their arms and legs are, and unlike paralyzed patients, they can still feel sensations of pain and touch. Some patients may have the ability to move certain facial muscles. The majority of locked-in syndrome patients do not regain motor control, but several devices are available to help patients communicate.

Patients with locked-in syndrome report feeling mostly tranquil, and some report feeling a little sad. This is contrary to the panic and terror that would be expected in people who cannot move or speak. This finding indicates that emotions are due to interpretations of bodily sensations. Since those who are locked-in have no bodily feeling, the brain fails to receive feedback indicative of alarm.

Parisian journalist Jean-Dominique Bauby had a stroke in 1995, and when he awoke 20 days later he found that his body had all but stopped working: he could only control his left eyelid. By blinking his eye he dictated a word at a time and in this way he wrote The Diving Bell and the Butterfly.

This syndrome was a plot point of the CSI: NY series premiere episode "Blink."

The original version of this article contained text from the NINDS public domain pages on TBI at

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Mental Capacity Act 2005, The
From Journal of Adult Protection, The, 8/1/05 by Brammer, Alison

The Mental Capacity Act 2005 received the Royal assent on 7 April 2005, prior to dissolution of Parliament for the general election. Key elements of this long-awaited Act may be traced back to the recommendations of the Law Commission consultation exercise that began in 1989. Ten years later, in 1999, the government published Making Decisions: The Government's proposals for making decisions on behalf of mentally incapacitated adults (LCD) and made a rather disappointing commitment to legislate 'when Parliamentary time allows'. Government attention then focussed on proposals to reform mental health law until publication of a draft Mental Incapacity Bill in June 2003. In the interim pressure for reform was maintained and a number of useful guides to the existing law on capacity and decision making were published by the Department of Health. The draft Bill was reviewed and reported on by a Joint Scrutiny Committee and the Department of Constitutional Affairs published the government's response in February 2004. A draft Code of Practice to accompany the Act was published in September 2004. A number of amendments were to made to the Bill which ultimately became the Act, including a significant change to the name of the Act from Mental Incapacity to Mental Capacity. The Act applies to England and Wales - similar legislation already exists in Scotland in the form of the Adults with Incapacity (Scotland) Act 2000.

A summary of the main provisions of the Act are set out in this column. It is important to note that the Act is not expected to be implemented before 2007. The existing law relating to mental capacity and decision making pertains until the Act is brought into force. This rests largely on common law principles, (ie those developed through case law rather than statute), such as the presumption in favour of capacity. It is likely that we will continue to see applications for High Court declarations determining disputes as to the best interests of individuals who do not have capacity to make particular decisions.

The preamble to the Act describes it as,

'An Act to make new provision relating to persons who lack capacity; to establish a superior court of record called the Court of Protection in place of the office of the Supreme Court called by that name; to make provision in connection with the Convention on the International Protection of Adults signed at the Hague on 13th January 2000; and for connected purposes.'

The legislation is divided into three main parts with accompanying schedules. Part I, entitled 'Persons who lack capacity', contains a set of principles to apply throughout the Act, provisions relating to the lasting power of attorney (LPA), general powers of the court and the appointment of deputies; advance decisions to refuse treatment, research and the independent mental capacity advocate scheme. Part II provides for the new Court of Protection and Public Guardian, with miscellaneous and general provisions contained in Part III. The Act applies to anyone over the age of 16. It will be relevant to people who have difficulty making decisions at any point in their lives, including adults with severe and profound learning disabilities, some people with autism, people with dementia, some people with mental health problems and some survivors of severe head injury.


The principles set out in section f of the Act are an important feature that restate some of the existing common law principles with further elaboration. The principles are:

* a person must be assumed to have capacity unless it is established that he lacks capacity

* a person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success

* a person is not to be treated as unable to make a decision merely because he makes an unwise decision

* an act done, or decision made for or on behalf of a person who lacks capacity must be in his best interests

* before the act is done, or the decision made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person's rights and freedom of action.

As these principles are set out with the objective of assisting the range of people affected by the Act, restatement of the common law presumption in favour of capacity, as the first principle, is welcome. The Act also endorses good practice by requiring steps to be taken to encourage first-hand decision making. The explanatory notes to the Bill suggested that such steps might include providing information relevant to the decision in a simple format, making sure the person is in an environment in which he is comfortable or involving an expert in helping the person express his views. The Act takes a functional approach to decision making and does not exclude what might appear to be irrational or eccentric decisions provided the person making the decision has capacity. Decisions and actions must be in the person's best interests, which is discussed further below. Finally, the Act introduces a 'minimum intervention' principle, supporting practices that interfere least with the individual's freedom of action. This principle follows the spirit of article 8 of the European Convention of Human Rights.

What is capacity?

Section 2 provides that a person lacks capacity if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of or a disturbance in the functioning of the mind or brain. It does not matter whether the impairment or disturbance is permanent or temporary. This is a diagnostic test which the notes to the Bill explain, 'could cover a range of problems, such as psychiatric illness, learning disability, dementia, brain damage or even a toxic confusional state, as long as it has the necessary effect on the functioning of the mind or brain, which causes the person to be unable to make the decision'. Consideration of capacity is limited to the particular decision under consideration at the particular time. It is not a general assessment of capacity. A lack of capacity cannot be established merely by reference to a person's age or appearance, or a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity. The question of whether a person lacks capacity must be decided on the balance of probabilities ie more likely than not.

Being 'unable to make a decision', is addressed in section 3 and means that the person is unable to understand the information relevant to the decision, unable to retain the information, unable to use the information as part of the process of making the decision or unable to communicate the decision. In most cases the first three criteria will apply. Being unable to communicate a decision may be particularly relevant for people with the very rare condition of 'locked-in syndrome'. 'Relevant information' includes the reasonably foreseeable consequences of deciding or failing to make a decision.

Best interests

All circumstances must be considered in deciding whether something is in a person's 'best interests'. The Act gives further guidance on particular factors to be taken into account in section 4. None of the factors carries any more weight or priority than another; the list is not exhaustive but should enable an objective assessment of what is in the person's best interest to be made.

The person making the decision must first consider whether the person is likely to have capacity at some time and if so when. This suggests that non-urgent decisions might be postponed if there is a likelihood of the person regaining capacity. There is also a requirement to permit and encourage the person to participate as fully as possible in any act or decision.

The factors which must be considered include: the ascertainable past and present wishes and feelings of the person concerned (including any relevant written statements); the beliefs and values that would be likely to influence his decision if he had capacity (including religious beliefs and cultural values); other factors the individual would be likely to consider if able to do so (this might include a sense of family obligation); the views of others it is considered appropriate to consult including anyone so named, carers and others interested in the person's welfare and any donees of an LPA or deputies appointed under the Act. In practice, whilst this list should help to structure decision making, the concept of 'best interests' is likely to remain extremely difficult to apply in many cases.

Acts in connection with care or treatment

Section 5 provides some legal security for those people, including carers, making day to day decisions for a person who lacks capacity. In effect it deems the person lacking capacity to have given consent to the person acting for him in providing care or treatment, in certain circumstances. It was previously referred to as a 'general authority to act reasonably' but the scrutiny process highlighted this as a negative and rather paternalistic term. Under the Act, where a person ("D") does an act in connection with the care or treatment of another person ("P"), he will not incur liability so long as he reasonably believes that that P lacks capacity in relation to the matter, and that it will be in P's best interests for the act to be done.

There are limitations to the protection offered by section 5. It will not authorise restraint unless it is necessary to prevent harm to P and is a proportionate response to the likelihood of P's suffering harm and the seriousness of that harm. The explanatory notes give examples of restraint including, pulling someone away from the road, putting on a seatbelt or administering sedatives before treatment.

Lasting Power of Attorney

A new order, the Lasting Power of Attorney (LPA) is created under sections 9 - 14 (it had been referred to in the consultation process as a Continuing Power of Attorney). Where an individual has capacity but anticipates possible loss of capacity in the future he may execute a Lasting Power of Attorney, thereby conferring authority to the attorney to make decisions on his behalf. This replaces and extends beyond the currently used Enduring Power of Attorney and the Enduring Powers of Attorney Act 1985 will be repealed. The most significant difference between the old EPA and new LPA is the extension to 'personal welfare' decisions. The Attorney (or attorneys) may be authorised to make decisions about personal welfare, including healthcare, property and affairs where the donor no longer has capacity to make those decisions.

This reflects the scope of decision making seen in High Court declarations case law. An LPA can be constructed to deal only with healthcare or property matters or a combination and it can place restrictions on the exercise of powers within those areas. It thus allows a great deal of flexibility for individuals who wish to plan ahead.

Any person over the age of 18 may execute an LPA as long as they have capacity to do so. The LPA can also be revoked by the donor if he has capacity. To be effective the LPA must be registered with the Public Guardian and comply with certain procedural requirements in Schedule 1. It may be registered as soon as it is executed, contrasting with the current position on EPAs where registration takes place once the person loses capacity. If any disputes arise as to the exercise of an LPA the Court of Protection has jurisdiction to hear the matter and give directions.

Court of Protection

A new Court of Protection that has been established under the Act will replace the existing Court of Protection. sections 15 to 23 deal with the powers of the Court, and the appointment and role of deputies. Appeals from the Court lie to the Court of Appeal. The court will have jurisdiction to determine disputes relating to capacity, including whether an individual has or lacks capacity to make a particular decision. The Court may make declarations about particular issues, such as contact or residence and declarations as to the lawfulness of any act done or contemplated, including omissions. The Court also has power to revoke an LPA if the Attorney has contravened his authority or acted other than in the best interests of the donor.

The court may also appoint a 'deputy' to make welfare and financial decisions for a person who either has not made an LPA and subsequently loses capacity, or could not have made an LPA because of a long term disability. This system will replace and extend the use of receivership currently operating from the Court of Protection. Deputies will be supervised by the Public Guardian. Appointment of deputies is subject to the principle that a decision by the court is to be preferred to the appointment of a deputy to make a decision, and the powers conferred on a deputy should be as limited in scope and duration as is reasonably practicable in the circumstances. A deputy is treated as the agent of the adult lacking capacity and is entitled to payment of reasonable expenses.

The Independent Mental Capacity Advocate Service

The Act requires the Secretary of State for Health to make arrangements to make independent advocates available to represent and support people who lack mental capacity. Following scrutiny the term independent mental capacity advocate was introduced in place of the term in the original Bill of independent consultee. An independent advocate will be involved: where serious medical treatment is proposed and there is no-one else who could be consulted about the patient's best interests; and where there is a proposal to accommodate a person in a hospital or care home.

The independent advocate will be entitled to interview in private the person whom he has been instructed to represent, and may examine and take copies of records relevant to the independent mental capacity advocate's investigation (including records relating to health, social services and residential accommodation). Much of the detail of the independent advocate's role will be set out in regulations.

Criminal offence

Finally, the Bill introduces a new offence. A person is guilty of an offence if he has the care of a person who lacks capacity or is reasonably believed to lack capacity or is the donee of a LPA or a deputy and he ill-treats or wilfully neglects the person. The offence is classified as an 'either way offence' (it may be prosecuted in the Magistrates or Crown Court), and carries a maximum sentence of five years imprisonment.

The new legislation has received a broad welcome. The legislation restates important common law principles, significantly the presumption in favour of capacity, and encourages first hand decision making. In instances of incapacity there are a range of options for substitute decision making, via the general authority, Lasting Power of Attorney and orders of the court, including the appointment of a deputy. The reconstituted Court of Protection should provide an accessible forum for adjudication of disputes on the question of individual capacity and 'best interests' decisions.

To access the Mental Capacity Act 2005, the Explanatory notes accompanying the original Bill and the draft Code of Practice, follow links from the Department of Constitutional Affairs website

Further useful commentary is available from the Making Decisions Alliance website

Outstanding aspects of the Act, including advance decisions to refuse treatment, will be considered in future columns.

Copyright Pavilion Publishing (Brighton) Ltd. Aug 2005
Provided by ProQuest Information and Learning Company. All rights Reserved

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