Epilepsy and Mental capacity Adina Nash – Clinical Nurse Specialist for epilepsy/Best Interest Assessor. Epilepsy and Mental capacity

Five principles of MCA (2005) ‘A person must be assumed to have capacity unless it is established that he lacks capacity.’ (section 12) ‘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.’ (section 1(3)) ‘A person is not to be treated as unable to make a decision merely because he makes an unwise decision.’ (section 1 (4)) ‘An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.’ (section 1 (5)) ‘Before the act is done, or the decision is 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.’ (section 1 (6)) Mental Capacity Act 2005 – Code of Practice (2005)

Decisions to accept treatment Definition of ‘best interest’ Areas to be addressed .... Decisions to accept treatment Definition of ‘best interest’ Advance decisions Life sustaining treatment Protection from liability The role of an IMCA

Decisions to accept treatment. ‘Treatment’ is defined as: the manner in which someone behaves towards or deals with someone. the use of a chemical, physical, or biological agent to preserve or give particular properties to something. www.oxforddictionaries.com (2014)

Examples: Investigations – screening bloods, EEGs, MRIs, CTs and others. Prescribing medications inclusive of AEDs and rescue remedies. Surgical interventions.

‘Best Interests’ The term ‘best interests’ is not defined in the MCA as there are many different types of decisions and actions that are covered. However.... Key principle of the MCA – any act done for, or any decision made on behalf of a person who lacks capacity must be done, or made, in that person’s best interests. This equally applies to healthcare. Fluctuating capacity – can decisions wait?

‘Best interests’ – examples to consider.... Refusal to accept treatment - inclusive of: medication inclusive of rescue medications for stopping prolonged clustered seizures. investigations inc filming seizures surgical intervention. Ictal aggression – can restraint be applied?

Advance decisions. An advanced decision enables someone whilst capable, to refuse treatment for a time in the future when they may lack capacity to consent; or refuse that treatment. If it applies to life-sustaining treatment then this must be in writing, signed and witnessed.

Advanced decisions – points to consider.... When to consider imparting this during part of a consultation (?). Which decisions need to be pre-empted, relevant to healthcare, when discussing an advanced decision? eg – Continued use of AEDs Prescriptions for new AEDs Surgical interventions to prolong life Use of rescue remedies for status epilepticus DNR orders If advanced decision is in place – how long ago was it made and has there been medical advances eg new treatments that patient was not aware of at the time? Sections 24-26 MCA (2005)

Life-sustaining treatment Section 4 (10) states that life-sustaining treatment is treatment which a healthcare professional who is providing care to the person regards as necessary to sustain life. Is there a written advanced decision in place? Clearly it is very important and good practice to discuss the implications of refusing life-sustaining treatment. However, it is not compulsory. A healthcare professional may disagree in principle. They do not have to do something that goes against their own beliefs. Options should be available to change to another healthcare professional. Court of protection may need to be involved if another is not available.

Protection from liability As long as healthcare professionals are making decisions for what they consider in the best interests of the individual they are protected from liability. (Section 5) There are exceptions: Advanced decisions to refuse treatment In specific circumstances - involvement of a person who lacks capacity in research.

The Independent Mental Capacity Advocate (IMCA). An IMCA must be instructed, and then consulted, for people who lack capacity who have no-one else to support them (other than paid staff - or in adult protection cases), whenever: An NHS body is proposing to provide serious medical treatment The person will stay in hospital for longer than 28 days They will stay in the care home for more than eight weeks.

The role of the Independent Mental Capacity Advocate (IMCA). There are three decisions requiring an IMCA: These are: Decisions about funding, withholding or stopping serious medical treatment. Decisions about whether to place people into accommodation (eg care home or long stay hospital), and Decisions about whether to move people to another different long stay accommodation.

In conclusion: There is considerable need to work with the person – whether they lack capacity to make certain decisions or not. To not assume that a person lacks capacity just by the way they look or how old they are. Ascertain if an Advance decision has been made and if it applies. ‘Best Interest’ decisions must not be based on what would be least stressful for the practitioner/carer. Instead, it should focus on the patient’s best interests.

........continued Medications need to be prescribed holistically (taking into account of co-morbid conditions/illness and behaviours). Investigations need to be the least restrictive and extra time to be given if necessary. IMCA needs to be instructed in accordance with MCA where necessary.