Www.nescn.nhs.uk. Barry l 45yr old man with LD. E/a with aspiration pneumonia and symptomatic...

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BarryBarry 45yr old man with LD. E/a with aspiration 45yr old man with LD. E/a with aspiration

pneumonia and symptomatic dysphagiapneumonia and symptomatic dysphagia Pneumonia treated. PEG option rejected Pneumonia treated. PEG option rejected

because of hiatus herniabecause of hiatus hernia Best interests meeting with relative and Best interests meeting with relative and

specialists uncovers local expertise in specialists uncovers local expertise in PEG insertion and hiatus hernia.PEG insertion and hiatus hernia.Agreement to insert PEGAgreement to insert PEG

Relative phones specialist disagreeing Relative phones specialist disagreeing with decision. Specialist cancels PEGwith decision. Specialist cancels PEG

Barry returns to care home and dies two Barry returns to care home and dies two months latermonths later

A decade of reports

20042004Treat me right!Treat me right!

2007 2007 Death by Indifference- 6Death by Indifference- 6

2009 2009 NHS ombudsman’s reportNHS ombudsman’s report

2010 2010 NHS progress NHS progress reportreport

2012 2012 Death by Indifference-74Death by Indifference-74

WinterbourneWinterbourne 20132013

CIPOLD reportCIPOLD report

Poor decision making a Poor decision making a consistent themeconsistent theme

CIPOLD reportCIPOLD report

Of 248 people with learning Of 248 people with learning disability who dieddisability who died

- 48% of the deaths were 48% of the deaths were avoidableavoidable**

- 30% had delays in diagnosis, 30% had delays in diagnosis, investigation and treatmentinvestigation and treatment

The Mental Capacity Act was poorly The Mental Capacity Act was poorly implemented in many casesimplemented in many cases

* 1200 avoidable deaths/year* 1200 avoidable deaths/year= the avoidable deaths in mid Staffs over = the avoidable deaths in mid Staffs over 10yrs10yrs

What’s the background?What’s the background?

The informed decision of a person with capacity takes precedence

If capacity could be assured in the future,no decisions need be made in advance

The informed decision of a person with capacity takes precedence

Advance care planning

No decisionabout me, without me

Shared decision making

= a dialoguebetween two experts....

the individual and the health or social care professional

Shared decision making

Deciding right Deciding right Enables compliance with three Enables compliance with three national national legal and clinical frameworkslegal and clinical frameworks

2005 Mental Capacity Act2005 Mental Capacity Act

2011 NHS End of Life Care guidance on2011 NHS End of Life Care guidance onadvance care planningadvance care planning

BMA/RC/RCN joint statement on BMA/RC/RCN joint statement on cardiopulmonary resuscitation cardiopulmonary resuscitation decisionsdecisions

The best legal and clinical frameworksThe best legal and clinical frameworks

...but complex, lengthy and....ignored...but complex, lengthy and....ignoredwww.nescn.nhs.uk/deciding-right www.nescn.nhs.uk/deciding-right

National initiatives which National initiatives which make no mention of MCAmake no mention of MCADHDH Essence of Care Essence of Care (2010) (2010)

Prime Minister’s Prime Minister’s Dementia ChallengeDementia Challenge (March 2012)(March 2012)

DH DH Mandate to NHS Commissioning BoardsMandate to NHS Commissioning Boards (April 2013)(April 2013)

DH DH Helping people make informed choices about Helping people make informed choices about health and social care health and social care (March 2013) (March 2013)

NHS England draft NHS England draft Transforming Participation in Transforming Participation in Health and CareHealth and Care (August 2013) (August 2013)

Winterbourne Review Improvement Programme Winterbourne Review Improvement Programme 20132013

GMC: the current GMC: the current Good Medical Practice Good Medical Practice 20132013

Neuberger panel report on the LCP Neuberger panel report on the LCP July 2013July 2013

NICE scope NICE scope Older people with long-term conditionsOlder people with long-term conditions Feb 2014Feb 2014

NICE scope NICE scope Transition children to adult services Transition children to adult services Apr Apr 20142014

ChoicesChoices

True / True / YesYes/ Agree/ AgreeFalse/ False/ NoNo/ / DisagreDisagreee

Don’t Don’t knowknowUncertaUncertainin

Try this.......Try this.......

Have you heard of the Mental Have you heard of the Mental Capacity Act?Capacity Act?

Do you know how the MCA applies to Do you know how the MCA applies to you and those you care for?you and those you care for?

True / True / YesYes/ Agree/ Agree

False/ False/ NoNo/ / DisagreDisagreee

Don’t Don’t knowknowUncertaUncertainin

TerryTerry

41 yr old man with a curable oral 41 yr old man with a curable oral carcinomacarcinoma

Past and present high alcohol intakePast and present high alcohol intake Good social and verbal skillsGood social and verbal skills Agreed to surgery, signed consentAgreed to surgery, signed consent On day of surgery became frightened, On day of surgery became frightened,

asking why he was in hospital and asking why he was in hospital and insisted on returning homeinsisted on returning home

Surgeons refusing to reschedule in Surgeons refusing to reschedule in case he refuses againcase he refuses again

What now?What now?

TerryTerry

First requirement of the First requirement of the Mental Capacity Act:Mental Capacity Act:

Assume the individual hasAssume the individual hascapacity for that decisioncapacity for that decision

....unless........unless....

CLIPCLIP Current Learning in Palliative Current Learning in Palliative carecare http.//learning.helpthehospices.org.uk http.//learning.helpthehospices.org.uk

1. A lack of capacity applies to 1. A lack of capacity applies to all decisionsall decisions

Capacity- True or false?Capacity- True or false?

2. Any carer who knows Terry 2. Any carer who knows Terry can assess capacitycan assess capacity

3. Emergency treatment is not 3. Emergency treatment is not possiblepossible

4. A 14yr old cannot have 4. A 14yr old cannot have capacitycapacity

TrueTrue

FalseFalse

FalseFalse

FalseFalse

CLIPCLIP Current Learning in Palliative Current Learning in Palliative carecare www.helpthehospices.org.uk/clip www.helpthehospices.org.uk/clip

Making an Making an unwise unwise decisiondecision

Which of these suggest Terry Which of these suggest Terry may notmay not have the capacity to consent to surgery:have the capacity to consent to surgery:

Making an Making an illogical illogical decisiondecision

Impairment Impairment of mind or of mind or

brain brain

Disturbance Disturbance of mind or of mind or brainbrain


Knowing today’s date and where he isKnowing today’s date and where he is

Which of these suggest Terry Which of these suggest Terry does havedoes havethe capacity to consent to surgery:the capacity to consent to surgery:

Able to speak clearlyAble to speak clearly

Able to count back from 10Able to count back from 10

Can remember informationCan remember information

Able to communicate his decisionAble to communicate his decision

Can understand informationCan understand information

Can weigh up informationCan weigh up information

Enabling these is the responsibility of the health or social care professional

No clarity about how to judge this ability- some 14yr olds have more maturity in making decisions than some 60yr olds!

TerryTerry

CapacityCapacity

Understood informationUnderstood informationRetained it long enough to weigh upRetained it long enough to weigh upAble to communicate backAble to communicate back‘If I don’t have the op, it’ll get bigger ‘If I don’t have the op, it’ll get bigger and spread.’and spread.’

……but unable to weigh details of risks but unable to weigh details of risks and benefits of surgeryand benefits of surgery

Has severe alcoholic dementia with Has severe alcoholic dementia with sparing of speechsparing of speech

Is advance care planning possible?Is advance care planning possible?


1. ACP should be the completed 1. ACP should be the completed in all patientsin all patients

ACP- True or false?ACP- True or false?

2. ACP can only be used for 2. ACP can only be used for patients who have capacity patients who have capacity for care decisionsfor care decisions

3. Advance care plans have no 3. Advance care plans have no definition or legal status definition or legal status

4. A verbal decision is a valid 4. A verbal decision is a valid outcome of ACPoutcome of ACP

TrueTrue

FalseFalse

TrueTrue

TrueTrue

ReflectionReflectionWho decides when to start Who decides when to start advance care planning?advance care planning?

Ghost train questionsGhost train questions

Questions sprung on unsuspecting Questions sprung on unsuspecting patients and relatives in a patients and relatives in a communication blackoutcommunication blackout

Do you want to be resuscitated?Do you want to be resuscitated?

Where do you want to die?Where do you want to die?

What can be the impact of such What can be the impact of such questions?questions?

TerryTerry

Terry does not have capacity to decide Terry does not have capacity to decide about surgeryabout surgery

What next?What next?


1. Terry should take part if 1. Terry should take part if possiblepossible

Best interests- True or false?Best interests- True or false?

2. Living wills and advance 2. Living wills and advance directives are part of the directives are part of the Mental Capacity ActMental Capacity Act

3. A Lasting Power of Attorney 3. A Lasting Power of Attorney is always legally bindingis always legally binding

4. MDTs 4. MDTs cannotcannot decide best decide best interestsinterests

FalseFalse

TrueTrue

FalseFalse

TrueTrue

Best interestsBest interests

The health or social care

professional’s expert

opinion based on the

individual’s circumstances

The health or social care

professional’s expert

opinion based on the

individual’s circumstances

With capacity = Shared Decision Making

Without capacity = MCA best interests process

With capacity = Shared Decision Making

Without capacity = MCA best interests process

Continuous dialogue

Best interestsBest interests if capacity lacking if capacity lacking- - minimum minimum required by MCArequired by MCA

DocumentDocument the best interests meeting: the best interests meeting:1.1.Is an IMCA needed?Is an IMCA needed?2.2.Have you avoided discrimination?Have you avoided discrimination?3.3.What would the individual have considered?What would the individual have considered?4.4.Could capacity return in time for a decision?Could capacity return in time for a decision?5.5.Have you included the patient if possible?Have you included the patient if possible?6.6.Have you ensured death is not the motivation?Have you ensured death is not the motivation?7.7.Have you considered the least restrictive Have you considered the least restrictive

option for the individual?option for the individual?8.8.Are there obligations and emotional bonds the Are there obligations and emotional bonds the

individual would have taken into account?individual would have taken into account?9.9.What decision would the individual have made What decision would the individual have made

in their best interests?in their best interests?

Document

TerryTerry

OutcomeOutcome Surgery rescheduledSurgery rescheduled Terry in agreement to go aheadTerry in agreement to go ahead Form 4 consent signed by Form 4 consent signed by

psychiatrist and surgeonpsychiatrist and surgeon Surgeons reminded they regularly Surgeons reminded they regularly

operate on patients who make it clear operate on patients who make it clear they do not want surgery (children)they do not want surgery (children)

Plan made to sedate in HDU for 24hrs Plan made to sedate in HDU for 24hrs post oppost op

Despite not being sedated and Despite not being sedated and striking nurse on waking, he striking nurse on waking, he recovered rapidly and returned to recovered rapidly and returned to EMI homeEMI home

TerryTerry

Terry agrees to start radiotherapy and Terry agrees to start radiotherapy and this is managed with practice runs and this is managed with practice runs and repeated explanationsrepeated explanationsHe starts high dose steroid to reduce He starts high dose steroid to reduce swellingswelling

Within days he develops a severe steroid Within days he develops a severe steroid induced psychosis and is sectionedinduced psychosis and is sectioned

The MHA governs all The MHA governs all True or True or False?False?decisions about his decisions about his treatmenttreatment

TerryTerry

Terry agrees to start radiotherapy and Terry agrees to start radiotherapy and this is managed with practice runs and this is managed with practice runs and repeated explanationsrepeated explanationsHe starts high dose steroid to reduce He starts high dose steroid to reduce swellingswelling

Within days he develops a severe steroid Within days he develops a severe steroid induced psychosis and is sectionedinduced psychosis and is sectioned

The MHA governs all The MHA governs all True or True or FalseFalse??decisions about his decisions about his treatmenttreatment

3 Doorstep principles3 Doorstep principles

1.1. Assume capacityAssume capacity

2.2. Capacity is specific to the Capacity is specific to the decision being madedecision being madeat that timeat that time

3.3. Best interests is a process Best interests is a process required by lawrequired by law

3 Practice principles3 Practice principles

1.1.No doubt about capacityNo doubt about capacity= obtain consent= obtain consent

2.2.Doubt about capacity for Doubt about capacity for this decisionthis decision

= test capacity= test capacity

3.3.Capacity lacking for this decisionCapacity lacking for this decision= MCA best interests process= MCA best interests process

•Compliant with MCACompliant with MCA•Suitable for all agesSuitable for all ages

Regional formsRegional forms

•Valid in all settingsValid in all settings•Individualise Individualise decisionsdecisions•Patient-specific, Patient-specific, not organisation not organisation specificspecific•Learn processLearn process•Encourage Encourage documentationdocumentation


1. An ADRT can be completed for 1. An ADRT can be completed for TerryTerry

ADRTs- True or false?ADRTs- True or false?

2. A signed ADRT is always 2. A signed ADRT is always legally bindinglegally binding

3. A valid and applicable ADRT 3. A valid and applicable ADRT must be followed even if the must be followed even if the clinicians disagreeclinicians disagree

4. An ADRT only becomes 4. An ADRT only becomes active when capacity is lost active when capacity is lost for that decisionfor that decision

FalseFalse

FalseFalse

TrueTrue

TrueTrue

Note that Note that this form this form applies to applies to all agesall ages

Original Original form goes form goes with with patient on patient on transfertransfer

These These decisions are decisions are based on the based on the Mental Mental Capacity ActCapacity Act

Must be approved by a senior clinician before being activated

Next review date can be written here (no more than

12 months)


1. A DNACPR must always be 1. A DNACPR must always be followedfollowed

CPR decisions - True or false?CPR decisions - True or false?

2. If a DNACPR has not been 2. If a DNACPR has not been completed, CPR must be completed, CPR must be started for an arreststarted for an arrest

3. Patients or relatives must 3. Patients or relatives must always consent to DNACPRalways consent to DNACPR

4. If CPR harm outweighs the 4. If CPR harm outweighs the benefit, patient is automatically benefit, patient is automatically DNACPRDNACPR

FalseFalse

FalseFalse

FalseFalse

FalseFalse

5. All palliative care patients 5. All palliative care patients should have a CPR decision should have a CPR decision mademade

FalseFalse

CPR clinical decision CPR clinical decision frameworkframework2014 BMA/RC/RCN Joint Statement2014 BMA/RC/RCN Joint Statement

Is an arrest NOT a possibility in the Is an arrest NOT a possibility in the present circumstances?present circumstances? = no decision = no decision

Is there a realistic chance that CPR Is there a realistic chance that CPR COULD be successful?COULD be successful?= obtain consent for CPR + communication= obtain consent for CPR + communication

Is there a realistic chance that CPR Is there a realistic chance that CPR CANNOT be successful?CANNOT be successful?= AND (Allow Natural Dying)= AND (Allow Natural Dying)= communication about end of life (= communication about end of life (nono consent)consent)


1. EHCPs should give general 1. EHCPs should give general advice about an emergencyadvice about an emergency

EHCPs- True or false?EHCPs- True or false?

2. The purpose of EHCPs is to 2. The purpose of EHCPs is to reduce hospital admissionsreduce hospital admissions

3. An EHCP cannot be written 3. An EHCP cannot be written for a person who lacks for a person who lacks capacitycapacity

4. An EHCP can be kept in the fridge

FalseFalse

FalseFalse

FalseFalse

TrueTrue

5. Only the original form can be sure of being the current form

TrueTrue

EmergencyTreat if possible

Person-centred Dialogue (Shared Decision Making)

The decision of the individual with capacity

usually takes precedence over any

other decision

If capacity

has been l

If capacity has been

lost

Emergency anticipated

EHCP +/- DNACPR

Best Interests process

Best Interests process

Advance Statement ADRTPersonal Welfare LPA

Advance Statement ADRTPersonal Welfare LPAIf capacity is

present but a loss is

anticipated

A little help....A little help.... Helps with Helps with

making decisions making decisions in advancein advance

Includes DNACPR Includes DNACPR decisionsdecisions

Includes children Includes children & young people& young people

Does not advise Does not advise treatmenttreatment

On Google Play On Google Play nownow

On Apple store On Apple store soonsoon

...and ...and they they apply to apply to ALL of ALL of us!us!

www.nescn.nhs.uk/deciding-right www.nescn.nhs.uk/deciding-right

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