1. Preparation for Practice Consent, Advanced Directives and Mental Capacity Barry Speker OBE DL barryspeker@samuelphillips.co.uk 3 December 2010 The Newcastle upon Tyne Hospitals NHS Foundation Trust

2. Health Decisions

3. Consent Express – Oral or written Express – Oral or written Implied Implied Proxy – Children Proxy – Children Gillick – the mature child Gillick – the mature child Standardised Consent Forms Standardised Consent Forms Risks – Percentages, Local, National Risks – Percentages, Local, National Court Applications for Declarations of Lawfulness Court Applications for Declarations of Lawfulness

4. Taking Consent When? Repeating? When? Repeating? Where? Where? By whom? By whom? Content – Risks? Content – Risks? Confirming details – to whom? How? Confirming details – to whom? How? Model Forms Model Forms Use of Leaflets/Booklets Use of Leaflets/Booklets

5. Children Cases Parental Responsibilty – Children Act – Who has it? Parental Responsibilty – Children Act – Who has it? Children in care Children in care Disputes between parents Disputes between parents Specific Issues Specific Issues Referral to the Court Referral to the Court Declarations of Lawfulness Declarations of Lawfulness Jehovahs Witnesses Jehovahs Witnesses

6. Mental Capacity Act 2005 A Statutory framework to empower and protect vulnerable people who are not able to make their own decisions to clarify and reform obscure common law provisions which govern the ways in which people can and should deal with people who lack decision-making capacity, supplemented by new and reformed statutory schemes for advance decision making and court-based resolution of disputes or difficulties to clarify and reform obscure common law provisions which govern the ways in which people can and should deal with people who lack decision-making capacity, supplemented by new and reformed statutory schemes for advance decision making and court-based resolution of disputes or difficulties

7. Loss of Capacity

8. Mental Capacity Act 2005 Decision making for adults without capacity Decision making for adults without capacity Empowering and protecting vulnerable people Empowering and protecting vulnerable people Planning ahead for loss of capacity-Lasting Powers of Attorney Planning ahead for loss of capacity-Lasting Powers of Attorney Advance decisions [Living Wills] Advance decisions [Living Wills] Assessing capacity Assessing capacity Best interests Best interests IMCAs IMCAs Code of Practice Code of Practice New criminal offence of ill-treatment and wilful neglect New criminal offence of ill-treatment and wilful neglect New Court of Protection New Court of Protection

9. Decisions, Decisions

10. Five Key Principles 1. Presumption of Capacity Every adult has the right to make decisions, capacity being presumed 2. Right of Individuals to make, and be given all practical help to make, own decisions, before being presumed incapable 3. Right to make unwise or eccentric decisions 4. Anything done for person without capacity to be in best interests 5. Least restrictive intervention – on basic rights and freedom

11. Incapacity An inability to make a decision due to an impairment of, or a disturbance in the functioning of, the mind or brainAn inability to make a decision due to an impairment of, or a disturbance in the functioning of, the mind or brain New statutory definition

12. Testing Incapacity

13. A person is unable to make a decision for himself if he is unable: 1. To understand the information relevant to the decision 2. To retain that information 3. To use or weigh that information as part of the process of making the decision; or 4. To communicate his decision [whether by talking, using sign language or any other means]

14. Incapacity Issues Fluctuating capacity Fluctuating capacity Uncertain extent of capacity Uncertain extent of capacity Reasonable belief based on objective reasons Reasonable belief based on objective reasons Must not make unjustified assumptions based on age, appearance, illness, behaviour Must not make unjustified assumptions based on age, appearance, illness, behaviour Resolving disputes about capacity Resolving disputes about capacity Refusal to be assessed Refusal to be assessed

15. Best Interests Check List Whether the person will at some time have capacity in relation to the matter in question and if so when Whether the person will at some time have capacity in relation to the matter in question and if so when So far as reasonably practicable the person must be permitted and encouraged to participate in the decision as fully as possible in relation to any act done by him or any decision affecting him So far as reasonably practicable the person must be permitted and encouraged to participate in the decision as fully as possible in relation to any act done by him or any decision affecting him Where determination relates to life-sustaining treatment the decision-maker must not be motivated by a desire to bring about this death Where determination relates to life-sustaining treatment the decision-maker must not be motivated by a desire to bring about this death A decision-maker must so far as is reasonably practicable consider the persons past and present wishes and feelings including in particular:- A decision-maker must so far as is reasonably practicable consider the persons past and present wishes and feelings including in particular:- [a] Any witness statement made by him when he had capacity [b] The beliefs and values that would be likely to influence a decision if he had capacity and [c] The other factors which he would be likely to consider if he were able to do so.

16. Consultation on Best Interests Decision-maker must consult and take into account the views of:- [a] Anyone named by the person as someone to be consulted on the matter in question or on matters of that kind [b] Anyone engaged in caring for the person or interested in his welfare [c] Any donee of a Lasting Power of Attorney granted by the person and [d] Any deputy appointed for the person by the Court as to what would be in the persons best interests A best interests judgement is not a substituted judgement test It is not an attempt to determine what the person would have wanted although this must be taken into account It is as objective as possible of what would be in the persons actual best interests

17. Exceptions to Best Interests Principle Where someone has previously made an Advance Directive to refuse medical treatment while they have the capacity to do so Where someone has previously made an Advance Directive to refuse medical treatment while they have the capacity to do so Involvement in research in certain circumstances Involvement in research in certain circumstances

18. Protection for People providing Care or Treatment An action or intervention will be lawful – i.e. health professionals will enjoy protection from liability – where the decision-maker has a reasonable belief both that:- An action or intervention will be lawful – i.e. health professionals will enjoy protection from liability – where the decision-maker has a reasonable belief both that:- 1. The individual lacks capacity and 2. The decision is in his or her best interests LIMITS A valid advance decision and a decision by an Attorney or the Court takes precedence A valid advance decision and a decision by an Attorney or the Court takes precedence The Act limits the extent of restriction of freedom of movement of an incapacitated person which is lawful only if necessary to prevent harm to the incapacitated person (not European Convention on Human Rights Article 5.1 and the Bournewood Case HL –v- United Kingdom [2004] ECHR The Act limits the extent of restriction of freedom of movement of an incapacitated person which is lawful only if necessary to prevent harm to the incapacitated person (not European Convention on Human Rights Article 5.1 and the Bournewood Case HL –v- United Kingdom [2004] ECHR

19. Capacity Cases which should still go to Court Cases involving organ or bone marrow donation by a person lacking capacity to consent Cases involving organ or bone marrow donation by a person lacking capacity to consent Proposals to withdraw or withhold artificial nutrition and hydration from patients in a persistent vegetative state Proposals to withdraw or withhold artificial nutrition and hydration from patients in a persistent vegetative state Proposals for non-therapeutic sterilisation Proposals for non-therapeutic sterilisation Some termination of pregnancy cases Some termination of pregnancy cases Cases where there is a doubt or dispute about whether a particular treatment will be in a persons best interests Cases where there is a doubt or dispute about whether a particular treatment will be in a persons best interests Cases involving ethical dilemmas in untested areas Cases involving ethical dilemmas in untested areas

20. Steps to take for protection from Liability 1. Reasonable steps to find out if the person has capacity to make a decision about the proposed action 2. If they have capacity consent must be taken 3. Must have reasonable grounds for believing that the action taken is in the best interests of the person who lacks capacity 4. Apply all the elements of the best interests check list 5. Weight up reasonableness 6. Consider care plan 7. Decide whether it is an emergency 8. Is there an advance decision and what is its effect? 9. Consult appropriately 10. Consider professional and other guidance 11. Is restraint justified? 12. Is the response proportionate?

21. Advance Decisions to Refuse Treatment The Act provides statutory clarification in relation to advance decisions to refuse treatment – other advance statements may be relevant but are not legally binding. Advance refusal of treatment is binding if:- The Act provides statutory clarification in relation to advance decisions to refuse treatment – other advance statements may be relevant but are not legally binding. Advance refusal of treatment is binding if:- The person making the directive is 18 or older when it was made and had the necessary mental capacity The person making the directive is 18 or older when it was made and had the necessary mental capacity It specifies the specific treatment to be refused and the particular circumstances in which the refusal is to apply It specifies the specific treatment to be refused and the particular circumstances in which the refusal is to apply The person making the directive has not withdrawn it when having capacity to do so The person making the directive has not withdrawn it when having capacity to do so The person has not appointed an Attorney to make the decision The person has not appointed an Attorney to make the decision The person making the directive has not done anything in consistent with the directive The person making the directive has not done anything in consistent with the directive

22. Advance Decisions Oral or in writing Oral or in writing If related to life-sustaining treatment must be in writing, signed and witnessed and containing a statement that it is to apply even where life is at risk If related to life-sustaining treatment must be in writing, signed and witnessed and containing a statement that it is to apply even where life is at risk Advance decisions can not be used to refuse basic care including warmth, shelter, hygiene, oral food and water (but not artificial nutrition and hydration) Advance decisions can not be used to refuse basic care including warmth, shelter, hygiene, oral food and water (but not artificial nutrition and hydration) [Note different considerations under Mental Health Act 1983]

23. Lasting Power of Attorney A legal document to give another person power to make decisions including decisions over:- Property and affairs (including financial matters) Property and affairs (including financial matters) Personal welfare (including healthcare and consent to medical treatment) Personal welfare (including healthcare and consent to medical treatment)

24. Distinguish LPAs from EPAs EPAs – property and affairs. LPAs also cover personal welfare EPAs – property and affairs. LPAs also cover personal welfare Specific and different forms to be used by donors for EPAs and LPAs Specific and different forms to be used by donors for EPAs and LPAs EPAs must be registered with the Public Guardian when donor can no longer manage affairs; LPAs can be registered at any time. Unless registered the LPA cannot be used EPAs must be registered with the Public Guardian when donor can no longer manage affairs; LPAs can be registered at any time. Unless registered the LPA cannot be used EPAs can be used while donor still has capacity to manage affairs as with property LPAs. Personal welfare LPAs can only be used when capacity is lost EPAs can be used while donor still has capacity to manage affairs as with property LPAs. Personal welfare LPAs can only be used when capacity is lost After October only LPAs can be made but existing EPAs will be valid. Different legal procedures. After October only LPAs can be made but existing EPAs will be valid. Different legal procedures.

25. Creating an LPA Adults aged over 18 with capacity Adults aged over 18 with capacity Written document set out in statutory form under regulations Written document set out in statutory form under regulations Must include prescribed information about the nature and effect of LPA Must include prescribed information about the nature and effect of LPA Donor must sign statement saying they have read the prescribed information and that they want LPA to apply when they no longer have capacity Donor must sign statement saying they have read the prescribed information and that they want LPA to apply when they no longer have capacity Must name people (other than the Attorneys) who should be told about an application to register the LPA, or it should say that there is no one to be told Must name people (other than the Attorneys) who should be told about an application to register the LPA, or it should say that there is no one to be told Attorneys must sign a statement saying they have read the prescribed information and understand their duties – in particular to act in donors best interests Attorneys must sign a statement saying they have read the prescribed information and understand their duties – in particular to act in donors best interests Document must contain a statement completed by an independent third party confirming their opinion that Donor understands LPAs purpose, was not exposed to fraud or undue pressure, trick or force Document must contain a statement completed by an independent third party confirming their opinion that Donor understands LPAs purpose, was not exposed to fraud or undue pressure, trick or force

26. LPAs and Court of Protection Determine whether LPA is valid Determine whether LPA is valid Give directions about using LPA Give directions about using LPA Removing an Attorney Removing an Attorney The Act creates a new public guardian with responsibility for registration and supervision of LPAs and Court appointed deputies

27. Independent Mental Capacity Advocate Service - IMCAs IMCA Service established to provide independent safeguards for people who lack capacity to make certain important decisions and have no one else to support or represent them IMCA Service established to provide independent safeguards for people who lack capacity to make certain important decisions and have no one else to support or represent them An IMCA must be instructed, and then consulted, for people lacking capacity who have no one else to support them (other than paid staff) whenever:- An IMCA must be instructed, and then consulted, for people lacking capacity who have no one else to support them (other than paid staff) whenever:- An NHS body is proposing to provide serious medical treatment, or An NHS body is proposing to provide serious medical treatment, or An NHS body or Local Authority is proposing to arrange accommodation (or a change of accommodation) in hospital or a care home, and An NHS body or Local Authority is proposing to arrange accommodation (or a change of accommodation) in hospital or a care home, and The person will stay in hospital longer than 28 days, or The person will stay in hospital longer than 28 days, or They will stay in the care home for more than 8 weeks They will stay in the care home for more than 8 weeks An IMCA may be instructed to support someone who lacks capacity to make decisions concerning:- An IMCA may be instructed to support someone who lacks capacity to make decisions concerning:- Care reviews, where no one else is available to be consulted Care reviews, where no one else is available to be consulted Adult protection cases, whether or not family, friends or others are involved Adult protection cases, whether or not family, friends or others are involved

28. Delivery of IMCA Service Built on good practice in the independent advocacy sector Built on good practice in the independent advocacy sector Provides statutory advocacy Provides statutory advocacy Instructed to support and represent people lacking capacity to make decisions on specific issues Instructed to support and represent people lacking capacity to make decisions on specific issues Have right to meet in private the person they are supporting Have right to meet in private the person they are supporting Allowed access to relevant health care and social care records Allowed access to relevant health care and social care records Must act quickly as part of decision making Must act quickly as part of decision making Authority given to designated organisations to act Authority given to designated organisations to act

29. Decisions about Serious Medical Treatment Treatment which involves: Giving new treatment Giving new treatment Stopping treatment already commenced Stopping treatment already commenced Withholding treatment that could be offered in circumstances where: Withholding treatment that could be offered in circumstances where: 1. If a single treatment is proposed there is a fine balance between the benefits and burdens and risks 2. A decision between choice of treatments is finely balanced or 3. What is proposed is likely to have serious consequences

30. Serious Consequences Serious or prolonged pain, distress or side effects Serious or prolonged pain, distress or side effects Have potentially major consequences for the patient or Have potentially major consequences for the patient or Have a serious impact on patients future life choices Have a serious impact on patients future life choices Examples include chemotherapy and surgery for cancer, ECT, therapeutic sterilisation, major surgery, amputations, treatment which will result in loss of hearing or sight Examples include chemotherapy and surgery for cancer, ECT, therapeutic sterilisation, major surgery, amputations, treatment which will result in loss of hearing or sight Withholding or stopping artificial nutrition and hydration Withholding or stopping artificial nutrition and hydration Termination of pregnancy Termination of pregnancy

31. Research Provisions for enrolling incapacitated adults in certain, closely regulated forms of medical research Provisions for enrolling incapacitated adults in certain, closely regulated forms of medical research Excluded are clinical trials regulated under the Medicines for Human Use (Clinical Trials) Regulations which also enable certain participation Excluded are clinical trials regulated under the Medicines for Human Use (Clinical Trials) Regulations which also enable certain participation

32. Inclusion in Research The research must have some chance of benefiting the person who lacks capacity The research must have some chance of benefiting the person who lacks capacity The benefit must be proportionate The benefit must be proportionate The aim of the research must be to provide knowledge about the cause of, or treatment or care of people with, the same impairing condition – or a similar condition The aim of the research must be to provide knowledge about the cause of, or treatment or care of people with, the same impairing condition – or a similar condition If research is for the benefit of others then:- Risk to the person who lacks capacity must be negligible Risk to the person who lacks capacity must be negligible There must be no significant interference with the freedom of action or privacy of the person lacking capacity and There must be no significant interference with the freedom of action or privacy of the person lacking capacity and Nothing must be done which is unduly invasive or restrictive Nothing must be done which is unduly invasive or restrictive Differentiate between therapeutic and non-therapeutic research Differentiate between therapeutic and non-therapeutic research

33. Ill-Treatment or Neglect Act creates new offence of ill treating or wilfully neglecting a person who lacks capacity Act creates new offence of ill treating or wilfully neglecting a person who lacks capacity Additional to offences under the Mental Health Act 1983 which relate to ill treatment or neglect of mentally disordered persons Additional to offences under the Mental Health Act 1983 which relate to ill treatment or neglect of mentally disordered persons New offence may be committed by professional carers, non-professionals such as relatives, donees or LPA or Court appointed deputies New offence may be committed by professional carers, non-professionals such as relatives, donees or LPA or Court appointed deputies Punishable by up to 5 years imprisonment Punishable by up to 5 years imprisonment

34. CODE OF PRACTICE Issued by the Lord Chancellor on 23 April 2007 Issued by the Lord Chancellor on 23 April 2007 Essential guide in all cases Essential guide in all cases Will provide evidence of steps taken to obtain protection Will provide evidence of steps taken to obtain protection www.dca.gov.uk/menincap/legis.htm#cod eofpractice 296 pages! www.dca.gov.uk/menincap/legis.htm#cod eofpractice 296 pages! www.dca.gov.uk/menincap/legis.htm#cod eofpractice www.dca.gov.uk/menincap/legis.htm#cod eofpractice

35. Summary of Decision Making Assessing capacity Assessing capacity Best interests Best interests Valid Lasting Power of Attorney? Valid Lasting Power of Attorney? Valid Advance directive? Valid Advance directive? Discussion with relatives and carers Discussion with relatives and carers IMCA? IMCA? Court appointed deputy Court appointed deputy Code of Practice Code of Practice Application to Court? Application to Court?

36. Department of Health Reference guide to consent for examination or treatment. Second edition 2009 www.dh.gov.uk/publications Second edition 2009 www.dh.gov.uk/publications Takes into account: Human Rights Act 1998 Human Rights Act 1998 Human Tissue Act 2004 Human Tissue Act 2004 Mental Capacity Act 2005and Code of Practice Mental Capacity Act 2005and Code of Practice Mrs B -v- an NHS Hospital Trust 2002 Mrs B -v- an NHS Hospital Trust 2002 Glass-v-UK 2004 ECHR Glass-v-UK 2004 ECHR Chester-v-Afshar 2004 UKHL Chester-v-Afshar 2004 UKHL Burke-v-General Medical Council [2005] Burke-v-General Medical Council [2005]

37. Action on Implementation 1. Training of clinicians and others 2. Awareness of the implications of the Act 3. Tests of incapacity and best interests 4. Meaning of advance decisions and lasting Powers of Attorney 5. Reviewing Trust policies on consent, Living Wills, withdrawal and withholding of consent 6. Consequential amendments to various Trust policies 7. Amendment of Consent Forms and issue of new forms- Consent Form 4 8. Availability of the Code of Practice 9. Improved record keeping on all capacity and consent issues

38. Questions?