1. Law relating to the patient who lacks capacity Dr Melissa McCullough Queen’s University Belfast

2. Overview Mental Capacity Act 2005 (England and Wales) Treatment and care towards the end of life: Good practice in decision making. GMC July 2010

3. Mental Capacity Act 2005 (England and Wales) Capacity and decision making: – Capacity – Best interests – Advanced Directives in the Act

4. Mental Capacity Act 2005 Background Mental capacity issues potentially affect everyone – People with: Dementia Learning disabilities Mental health problems Stroke and head injuries – Informal carers, social care and healthcare professionals may provide care or treatment for them

5. Mental Capacity Act 2005 The 5 Principles A presumption of capacity Individuals being supported to make their own decisions Unwise decisions Best interests Least restrictive (DCA 2007)

6. Assumption of Capacity and Supported Decision Making Act sets out an assumption of competence Obligation to take all practicable steps to help the person take his or her own decision Act makes it clear that a person’s age, appearance, condition or behaviour does not by itself establish a lack of mental capacity Must give information in a clear and easy way to understand Must help the person who lacks capacity to communicate

7. Assumption of Capacity and Supported Decision Making Similar to the common law with a few new features: – Ability to nominate substitute decision-makers under a Lasting Power of Attorney (LPA) – Development of a new Court of Protection with extended powers – ‘Substituted judgement’ in best interest test

8. Competence Act sets out the best practice approach to determining capacity - whether an individual is able, at a particular time of making a particular decision Issue specific Detail on what is involved in assessing capacity is covered in the Code of Practice

9. Capacity A person lacks capacity in relation to a matter 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. Code of Practice lists: mental illness significant learning disability dementia brain damage intoxication physical or medical condition that causes confusion, drowsiness or loss of consciousness delirium concussion

10. Functional Capacity ‘test’ To understand the information relevant to the decision To retain the information relevant to the decision To use or weigh the information, or To communicate the decision (by any means) Where an individual fails one or more parts of this test, then they do not have the relevant capacity and the entire test is failed.

11. Case 28

12. Advanced Directives Act provides welcome statutory clarification Restricted to advance decisions to refuse treatment An advance refusal of treatment is binding if a number of conditions are met.

13. Advanced Directives Allows you to refuse specified medical treatment in advance Are legally binding now but Act gives greater safeguards Must be made when you have capacity and comes into effect if you lack capacity Must be clear about which treatment it applies to and when and must be in writing and witnessed if it applies to life- sustaining treatment Doctors can provide treatment if they have any doubt that the advance decision is valid and applicable

14. Advanced Directives Advanced decisions cannot be used to refuse basic care, which includes warmth, shelter and hygiene measures to maintain body cleanliness. This also includes the offer of oral food and water, but not artificial nutrition and hydration.

15. Advanced Directives/Decision An advance refusal of treatment is binding if: 18 or older when it was made with mental capacity It specifies the specific treatment to be refused and the particular circumstances The person making the directive has not done anything clearly inconsistent with the directive remaining a fixed decision Can be oral or in writing BUT advance refusal will only apply to life-sustaining treatment where it is – in writing, signed, witnessed – contains a statement that it is to apply even where life is at risk

16. Case 67

17. Best interests (s.4) All decisions must be made in the best interests of the person who lacks capacity It is the key principle that governs all decisions made for people who lack capacity Same as the current common law Must consider all relevant circumstances Act doesn’t define best interests but does give a checklist: – Must involve the person who lacks capacity – Have regard for past and present wishes and feelings, beliefs – Consult with others who are involved in the care of the person (LPA, friends, family, carers, deputy assigned from Court of Protection) – There can be no discrimination

18. Code of Practice When working out what is in the best interest of the person whom lacks capacity to make a decision or act form themselves, decision makers must take into account all relevant factors that it would be reasonable to consider, not just those that they think are important. They must not act or make a decision based on what they would want to do if they were the person who lacked capacity. (DCA 2007: para 5.7)

19. The following cases should continue to go before the court: Proposals to withdraw or withhold artificial nutrition and hydration from patients in PVS Cases involving organ or bone marrow donation by a person lacking the capacity to consent Proposals for non-therapeutic sterilisation Some termination of pregnancy cases Cases where there is a doubt or dispute about whether a particular treatment will be in a person’s best interests Cases involving ethical dilemmas in untested areas

20. Proposal for NI Mental Capacity Bill 2011: Some of the features Advance decision–making A lasting power of attorney (This would replace and extend the existing enduring power of attorney which only deals with financial affairs.) A High Court appointed deputy (who can be given the authority to make financial decisions on behalf of someone who lacks capacity and act in the best interest of that person.) A new Office of Public Guardian – to ensure that both court appointed deputies and those appointed as lasting powers of attorney act in the best interest of the incapacitated person. Statutory recognition of the views of carers – to be taken into account when decisions are being made. http://www.dhsspsni.gov.uk/legislative-framework-for-mental-capacity.pdf

24. GMC End of Life Care (video)

25. Melissa McCullough m.mccullough@qub.ac.uk The End