Preparation for Practice Consent, Advanced Directives and Mental Capacity Barry Speker OBE DL [email protected] 3 December 2010 The Newcastle.

Preparation for PracticePreparation for Practice

Consent, Advanced Directives Consent, Advanced Directives and Mental Capacityand Mental Capacity

Barry SpekerBarry Speker OBE DL OBE DL

[email protected]@samuelphillips.co.uk

3 December 20103 December 2010

The Newcastle upon Tyne Hospitals The Newcastle upon Tyne Hospitals NHSNHS Foundation TrustFoundation Trust

Health DecisionsHealth Decisions

ConsentConsent

Express – Oral or writtenExpress – Oral or written ImpliedImplied Proxy – ChildrenProxy – Children Gillick – the mature childGillick – the mature child Standardised Consent FormsStandardised Consent Forms Risks – Percentages, Local, Risks – Percentages, Local, NationalNational

Court Applications for Court Applications for Declarations of LawfulnessDeclarations of Lawfulness

Taking ConsentTaking Consent

When? Repeating?When? Repeating? Where?Where? By whom?By whom? Content – Risks?Content – Risks? Confirming details – to whom? Confirming details – to whom? How?How?

Model FormsModel Forms Use of Leaflets/BookletsUse of Leaflets/Booklets

Children CasesChildren Cases

Parental Responsibilty – Parental Responsibilty – Children Act – Who has it?Children Act – Who has it?

Children in careChildren in care Disputes between parentsDisputes between parents Specific IssuesSpecific Issues Referral to the CourtReferral to the Court Declarations of LawfulnessDeclarations of Lawfulness Jehovah’s WitnessesJehovah’s Witnesses

Mental Capacity Act 2005Mental Capacity Act 2005

A Statutory framework to empower and A Statutory framework to empower and protect vulnerable people who are protect vulnerable people who are not able to make their own not able to make their own decisionsdecisions

“ “ to clarify and reform obscure common law provisions to clarify and reform obscure common law provisions which govern the ways in which people can and should deal which govern the ways in which people can and should deal with people who lack decision-making capacity, with people who lack decision-making capacity, supplemented by new and reformed statutory schemes for supplemented by new and reformed statutory schemes for advance decision making and court-based resolution of advance decision making and court-based resolution of disputes or difficulties” disputes or difficulties”

Loss of CapacityLoss of Capacity

Mental Capacity Act 2005Mental Capacity Act 2005 Decision making for Decision making for adultsadults without capacity without capacity Empowering and protecting vulnerable peopleEmpowering and protecting vulnerable people Planning ahead for loss of capacity-Lasting Planning ahead for loss of capacity-Lasting Powers of AttorneyPowers of Attorney

Advance decisions [Living Wills]Advance decisions [Living Wills] Assessing capacityAssessing capacity Best interestsBest interests IMCAsIMCAs Code of PracticeCode of Practice New criminal offence of ill-treatment and New criminal offence of ill-treatment and wilful neglectwilful neglect

New Court of ProtectionNew Court of Protection

Decisions, DecisionsDecisions, Decisions

Five Key PrinciplesFive Key Principles

1.1. Presumption of CapacityPresumption of Capacity Every adult Every adult has the right to make decisions, has the right to make decisions, capacity being presumedcapacity being presumed

2.2. Right of Individuals to make, and be Right of Individuals to make, and be given all given all practical help to make, practical help to make, own decisionsown decisions, before being presumed , before being presumed incapableincapable

3.3. Right to makeRight to make unwise or eccentric unwise or eccentric decisionsdecisions

4.4. Anything done for person without Anything done for person without capacity to be in capacity to be in best interestsbest interests

5.5. Least restrictive interventionLeast restrictive intervention – on – on basic rights and freedombasic rights and freedom

IncapacityIncapacity

““An inability to make a decision An inability to make a decision due to an impairment of, or a due to an impairment of, or a disturbance in the functioning disturbance in the functioning of, the mind or brain”of, the mind or brain”

New statutory New statutory definitiondefinition

Testing IncapacityTesting Incapacity

Testing IncapacityTesting Incapacity

A person is unable to make a decision A person is unable to make a decision for himself if he is unable:for himself if he is unable:

1.1. To understand the information To understand the information relevant to the decisionrelevant to the decision

2.2. To retain that informationTo retain that information3.3. To use or weigh that information To use or weigh that information

as part of the process of making as part of the process of making the decision; orthe decision; or

4.4. To communicate his decision To communicate his decision [whether by talking, using sign [whether by talking, using sign language or any other means]language or any other means]

Incapacity IssuesIncapacity Issues

Fluctuating capacityFluctuating capacity Uncertain extent of capacityUncertain extent of capacity Reasonable belief based on Reasonable belief based on objective reasonsobjective reasons

Must not make unjustified Must not make unjustified assumptions based on age, assumptions based on age, appearance, illness, behaviourappearance, illness, behaviour

Resolving disputes about capacityResolving disputes about capacity Refusal to be assessedRefusal to be assessed

Best InterestsBest Interests

Check ListCheck List Whether the person will at some time have capacity in Whether the person will at some time have capacity in

relation to the matter in question and if so whenrelation to the matter in question and if so when So far as reasonably practicable the person must be So far as reasonably practicable the person must be

permitted and encouraged to participate in the decision permitted and encouraged to participate in the decision as fully as possible in relation to any act done by him as fully as possible in relation to any act done by him or any decision affecting himor any decision affecting him

Where determination relates to life-sustaining Where determination relates to life-sustaining treatment the decision-maker must not be motivated by a treatment the decision-maker must not be motivated by a desire to bring about this deathdesire to bring about this death

A decision-maker must so far as is reasonably A decision-maker must so far as is reasonably practicable consider the person’s past and present practicable consider the person’s past and present wishes and feelings including in particular:-wishes and feelings including in particular:-

[a] Any witness statement made by him when he had capacity[a] Any witness statement made by him when he had capacity[b] The beliefs and values that would be likely to [b] The beliefs and values that would be likely to

influence a decision if he had capacity andinfluence a decision if he had capacity and[c] The other factors which he would be likely to consider [c] The other factors which he would be likely to consider

if he were able to do so.if he were able to do so.

Consultation on Best InterestsConsultation on Best Interests

Decision-maker must consult and take into account the Decision-maker must consult and take into account the views of:-views of:-

[a] Anyone named by the person as someone to be [a] Anyone named by the person as someone to be consulted on the matter in question or on matters of consulted on the matter in question or on matters of that kindthat kind

[b] Anyone engaged in caring for the person or [b] Anyone engaged in caring for the person or interested in his welfareinterested in his welfare

[c] Any donee of a Lasting Power of Attorney granted by [c] Any donee of a Lasting Power of Attorney granted by the person andthe person and

[d] Any deputy appointed for the person by the Court as [d] Any deputy appointed for the person by the Court as to what would be in the person’s best intereststo what would be in the person’s best interests

A best interests judgement is A best interests judgement is not not a a “substituted “substituted judgement” judgement” test test

It is not an attempt to determine what the person would It is not an attempt to determine what the person would have wanted although this must be taken into accounthave wanted although this must be taken into account

It is as objective as possible of what would be in the It is as objective as possible of what would be in the person’s actual best interestsperson’s actual best interests

Exceptions to Best Interests Exceptions to Best Interests PrinciplePrinciple

Where someone has previously Where someone has previously made an Advance Directive to made an Advance Directive to refuse medical treatment while refuse medical treatment while they have the capacity to do sothey have the capacity to do so

Involvement in research in Involvement in research in certain circumstancescertain circumstances

Protection for People providing Protection for People providing Care or TreatmentCare or Treatment

An action or intervention will be lawful – An action or intervention will be lawful – i.e. health professionals will enjoy i.e. health professionals will enjoy protection from liability – where the protection from liability – where the decision-maker has a decision-maker has a reasonable beliefreasonable belief both both that:-that:-

1.1. The individual lacks capacity andThe individual lacks capacity and2.2. The decision is in his or her best interestsThe decision is in his or her best interests

LIMITSLIMITS A valid advance decision and a decision by an A valid advance decision and a decision by an

Attorney or the Court takes precedenceAttorney or the Court takes precedence The Act limits the extent of restriction of freedom The Act limits the extent of restriction of freedom

of movement of an incapacitated person which is of movement of an incapacitated person which is lawful only if necessary to prevent harm to the lawful only if necessary to prevent harm to the incapacitated person (not European Convention on incapacitated person (not European Convention on Human Rights Article 5.1 and the Bournewood Case HL Human Rights Article 5.1 and the Bournewood Case HL –v- United Kingdom [2004] ECHR–v- United Kingdom [2004] ECHR

Capacity Cases which should still Capacity Cases which should still go to Courtgo to Court

Cases involving organ or bone marrow Cases involving organ or bone marrow donation by a person lacking capacity to donation by a person lacking capacity to consentconsent

Proposals to withdraw or withhold artificial Proposals to withdraw or withhold artificial nutrition and hydration from patients in a nutrition and hydration from patients in a persistent vegetative statepersistent vegetative state

Proposals for non-therapeutic sterilisationProposals for non-therapeutic sterilisation Some termination of pregnancy casesSome termination of pregnancy cases Cases where there is a doubt or dispute Cases where there is a doubt or dispute about whether a particular treatment will be about whether a particular treatment will be in a person’s best interestsin a person’s best interests

Cases involving ethical dilemmas in untested Cases involving ethical dilemmas in untested areasareas

Steps to take for protection from Steps to take for protection from LiabilityLiability

1.1. Reasonable steps to find out if the person has Reasonable steps to find out if the person has capacity to make a decision about the proposed capacity to make a decision about the proposed actionaction

2.2. If they have capacity consent must be takenIf they have capacity consent must be taken3.3. Must have reasonable grounds for believing that the Must have reasonable grounds for believing that the

action taken is in the best interests of the person action taken is in the best interests of the person who lacks capacitywho lacks capacity

4.4. Apply all the elements of the best interests check Apply all the elements of the best interests check listlist

5.5. Weight up reasonablenessWeight up reasonableness6.6. Consider care planConsider care plan7.7. Decide whether it is an emergencyDecide whether it is an emergency8.8. Is there an advance decision and what is its effect?Is there an advance decision and what is its effect?9.9. Consult appropriatelyConsult appropriately10.10. Consider professional and other guidanceConsider professional and other guidance11.11. Is restraint justified?Is restraint justified?12.12. Is the response proportionate?Is the response proportionate?

Advance Decisions to Refuse Advance Decisions to Refuse TreatmentTreatment

The Act provides statutory clarification in relation The Act provides statutory clarification in relation to advance decisions to refuse treatment – other to advance decisions to refuse treatment – other advance statements may be relevant but are not advance statements may be relevant but are not legally binding. Advance refusal of treatment is legally binding. Advance refusal of treatment is binding if:-binding if:-

The person making the directive is 18 or older when The person making the directive is 18 or older when it was made and had the necessary mental capacityit was made and had the necessary mental capacity

It specifies the specific treatment to be refused and It specifies the specific treatment to be refused and the particular circumstances in which the refusal is the particular circumstances in which the refusal is to applyto apply

The person making the directive has not withdrawn it The person making the directive has not withdrawn it when having capacity to do sowhen having capacity to do so

The person has not appointed an Attorney to make the The person has not appointed an Attorney to make the decisiondecision

The person making the directive has not done anything The person making the directive has not done anything in consistent with the directivein consistent with the directive

Advance DecisionsAdvance Decisions Oral or in writingOral or in writing If related to life-sustaining If related to life-sustaining treatment must be in writing, signed treatment must be in writing, signed and witnessed and containing a and witnessed and containing a statement that it is to apply even statement that it is to apply even where life is at riskwhere life is at risk

Advance decisions can Advance decisions can notnot be used to be used to refuse basic care including warmth, refuse basic care including warmth, shelter, hygiene, oral food and shelter, hygiene, oral food and water (but not artificial nutrition water (but not artificial nutrition and hydration)and hydration)

[Note different considerations under [Note different considerations under Mental Health Act 1983]Mental Health Act 1983]

Lasting Power of AttorneyLasting Power of Attorney

A legal document to give another A legal document to give another person power to make decisions person power to make decisions including decisions over:-including decisions over:-

Property and affairs (including Property and affairs (including financial matters)financial matters)

Personal welfare (including Personal welfare (including healthcare and consent to healthcare and consent to medical treatment)medical treatment)

Distinguish LPAs from EPAsDistinguish LPAs from EPAs

EPAs – property and affairs. LPAs also EPAs – property and affairs. LPAs also cover personal welfarecover personal welfare

Specific and different forms to be used by Specific and different forms to be used by donors for EPAs and LPAsdonors for EPAs and LPAs

EPAs must be registered with the Public EPAs must be registered with the Public Guardian when donor can no longer manage Guardian when donor can no longer manage affairs; LPAs can be registered at any time. affairs; LPAs can be registered at any time. Unless registered the LPA cannot be used Unless registered the LPA cannot be used

EPAs can be used while donor still has EPAs can be used while donor still has capacity to manage affairs as with property capacity to manage affairs as with property LPAs. Personal welfare LPAs can only be LPAs. Personal welfare LPAs can only be used when capacity is lostused when capacity is lost

After October only LPAs can be made but After October only LPAs can be made but existing EPAs will be valid. Different existing EPAs will be valid. Different legal procedures.legal procedures.

Creating an LPACreating an LPA Adults aged over 18 with capacityAdults aged over 18 with capacity Written document set out in statutory form under Written document set out in statutory form under

regulationsregulations Must include prescribed information about the nature Must include prescribed information about the nature

and effect of LPAand effect of LPA Donor must sign statement saying they have read the Donor must sign statement saying they have read the

prescribed information and that they want LPA to apply prescribed information and that they want LPA to apply when they no longer have capacitywhen they no longer have capacity

Must name people (other than the Attorneys) who should Must name people (other than the Attorneys) who should be told about an application to register the LPA, or be told about an application to register the LPA, or it should say that there is no one to be toldit should say that there is no one to be told

Attorneys must sign a statement saying they have read Attorneys must sign a statement saying they have read the prescribed information and understand their duties the prescribed information and understand their duties – in particular to act in donor’s best interests– in particular to act in donor’s best interests

Document must contain a statement completed by an Document must contain a statement completed by an independent third party confirming their opinion that independent third party confirming their opinion that Donor understands LPA’s purpose, was not exposed to Donor understands LPA’s purpose, was not exposed to fraud or undue pressure, trick or forcefraud or undue pressure, trick or force

LPAs and Court of ProtectionLPAs and Court of Protection

Determine whether LPA is validDetermine whether LPA is valid Give directions about using LPAGive directions about using LPA Removing an AttorneyRemoving an Attorney

The Act creates a new public The Act creates a new public guardian with responsibility guardian with responsibility for registration and for registration and supervision of LPAs and Court supervision of LPAs and Court appointed deputiesappointed deputies

Independent Mental Capacity Independent Mental Capacity Advocate Service - IMCAsAdvocate Service - IMCAs

IMCA Service established to provide independent safeguards IMCA Service established to provide independent safeguards for people who lack capacity to make certain important for people who lack capacity to make certain important decisions and have no one else to support or represent themdecisions and have no one else to support or represent them

An IMCA An IMCA mustmust be instructed, and then consulted, for people be instructed, and then consulted, for people lacking capacity who have no one else to support them lacking capacity who have no one else to support them (other than paid staff) whenever:-(other than paid staff) whenever:-

An NHS body is proposing to provide serious medical An NHS body is proposing to provide serious medical treatment, ortreatment, or

An NHS body or Local Authority is proposing to arrange An NHS body or Local Authority is proposing to arrange accommodation (or a change of accommodation) in hospital or accommodation (or a change of accommodation) in hospital or a care home, anda care home, and

The person will stay in hospital longer than 28 days, orThe person will stay in hospital longer than 28 days, or They will stay in the care home for more than 8 weeksThey will stay in the care home for more than 8 weeks An IMCA An IMCA maymay be instructed to support someone who lacks be instructed to support someone who lacks

capacity to make decisions concerning:-capacity to make decisions concerning:- Care reviews, where no one else is available to be Care reviews, where no one else is available to be

consultedconsulted Adult protection cases, whether or not family, friends or Adult protection cases, whether or not family, friends or

others are involvedothers are involved

Delivery of IMCA ServiceDelivery of IMCA Service Built on good practice in the independent Built on good practice in the independent advocacy sectoradvocacy sector

Provides statutory advocacy Provides statutory advocacy Instructed to support and represent people Instructed to support and represent people lacking capacity to make decisions on lacking capacity to make decisions on specific issuesspecific issues

Have right to meet in private the person Have right to meet in private the person they are supportingthey are supporting

Allowed access to relevant health care and Allowed access to relevant health care and social care recordssocial care records

Must act quickly as part of decision makingMust act quickly as part of decision making Authority given to designated organisations Authority given to designated organisations to actto act

Decisions about Serious Medical Decisions about Serious Medical TreatmentTreatment

Treatment which involves:Treatment which involves:

Giving new treatmentGiving new treatment Stopping treatment already commencedStopping treatment already commenced Withholding treatment that could be offered Withholding treatment that could be offered

in circumstances where:in circumstances where:1.1. If a single treatment is proposed there is If a single treatment is proposed there is

a fine balance between the benefits and a fine balance between the benefits and burdens and risksburdens and risks

2.2. A decision between choice of treatments is A decision between choice of treatments is finely balanced orfinely balanced or

3.3. What is proposed is likely to have serious What is proposed is likely to have serious consequencesconsequences

Serious ConsequencesSerious Consequences

Serious or prolonged pain, distress or side Serious or prolonged pain, distress or side effectseffects

Have potentially major consequences for the Have potentially major consequences for the patient orpatient or

Have a serious impact on patient’s future life Have a serious impact on patient’s future life choiceschoices

Examples include chemotherapy and surgery for Examples include chemotherapy and surgery for cancer, ECT, therapeutic sterilisation, major cancer, ECT, therapeutic sterilisation, major surgery, amputations, treatment which will surgery, amputations, treatment which will result in loss of hearing or sightresult in loss of hearing or sight

Withholding or stopping artificial nutrition Withholding or stopping artificial nutrition and hydrationand hydration

Termination of pregnancyTermination of pregnancy

Research Research

Provisions for enrolling Provisions for enrolling incapacitated adults in certain, incapacitated adults in certain, closely regulated forms of medical closely regulated forms of medical researchresearch

Excluded are clinical trials Excluded are clinical trials regulated under the Medicines for regulated under the Medicines for Human Use (Clinical Trials) Human Use (Clinical Trials) Regulations which also enable Regulations which also enable certain participationcertain participation

Inclusion in ResearchInclusion in Research The research must have some chance of benefiting The research must have some chance of benefiting the person who lacks capacitythe person who lacks capacity

The benefit must be proportionateThe benefit must be proportionate The aim of the research must be to provide The aim of the research must be to provide knowledge about the cause of, or treatment or care knowledge about the cause of, or treatment or care of people with, the same impairing condition – or of people with, the same impairing condition – or a similar conditiona similar condition

If research is for the benefit of others then:-If research is for the benefit of others then:- Risk to the person who lacks capacity must be Risk to the person who lacks capacity must be negligiblenegligible

There must be no significant interference with the There must be no significant interference with the freedom of action or privacy of the person lacking freedom of action or privacy of the person lacking capacity andcapacity and

Nothing must be done which is unduly invasive or Nothing must be done which is unduly invasive or restrictiverestrictive

Differentiate between therapeutic and non-Differentiate between therapeutic and non-therapeutic researchtherapeutic research

Ill-Treatment or NeglectIll-Treatment or Neglect

Act creates new offence of ill treating or Act creates new offence of ill treating or wilfully neglecting a person who lacks wilfully neglecting a person who lacks capacitycapacity

Additional to offences under the Mental Additional to offences under the Mental Health Act 1983 which relate to ill Health Act 1983 which relate to ill treatment or neglect of mentally treatment or neglect of mentally disordered personsdisordered persons

New offence may be committed by New offence may be committed by professional carers, non-professionals professional carers, non-professionals such as relatives, donees or LPA or Court such as relatives, donees or LPA or Court appointed deputiesappointed deputies

Punishable by up to 5 years imprisonment Punishable by up to 5 years imprisonment

CODE OF PRACTICECODE OF PRACTICE

Issued by the Lord Chancellor Issued by the Lord Chancellor on 23 April 2007on 23 April 2007

Essential guide in all casesEssential guide in all cases Will provide evidence of steps Will provide evidence of steps taken to obtain protectiontaken to obtain protection

www.dca.gov.uk/menincap/legis.htm#codeofpractice 296 pages! 296 pages!

Summary of Decision MakingSummary of Decision Making

Assessing capacity Assessing capacity Best interestsBest interests Valid Lasting Power of Attorney?Valid Lasting Power of Attorney? Valid Advance directive?Valid Advance directive? Discussion with relatives and carersDiscussion with relatives and carers IMCA?IMCA? Court appointed deputyCourt appointed deputy Code of PracticeCode of Practice Application to Court?Application to Court?

Department of HealthDepartment of HealthReference guide to consent for Reference guide to consent for examination or treatment.examination or treatment.

Second edition 2009Second edition 2009 www.dh.gov.uk/publications www.dh.gov.uk/publications

Takes into account: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 PracticeMental Capacity Act 2005and Code of Practice

Mrs B -v- an NHS Hospital Trust 2002Mrs B -v- an NHS Hospital Trust 2002

Glass-v-UK 2004 ECHRGlass-v-UK 2004 ECHR

Chester-v-Afshar 2004 UKHLChester-v-Afshar 2004 UKHL

Burke-v-General Medical Council [2005]Burke-v-General Medical Council [2005]

Action on ImplementationAction on Implementation

1.1. Training of clinicians and othersTraining of clinicians and others2.2. Awareness of the implications of the ActAwareness of the implications of the Act3.3. Tests of incapacity and best interestsTests of incapacity and best interests4.4. Meaning of advance decisions and lasting Meaning of advance decisions and lasting

Powers of AttorneyPowers of Attorney5.5. Reviewing Trust policies on consent, Living Reviewing Trust policies on consent, Living

Wills, withdrawal and withholding of consentWills, withdrawal and withholding of consent6.6. Consequential amendments to various Trust Consequential amendments to various Trust

policiespolicies7.7. Amendment of Consent Forms and issue of new Amendment of Consent Forms and issue of new

forms-Consent Form 4forms-Consent Form 48.8. Availability of the Code of PracticeAvailability of the Code of Practice9.9. Improved record keeping on all capacity and Improved record keeping on all capacity and

consent issuesconsent issues

Questions?Questions?