ADVANCE CARE ADVANCE CARE PLANNINGPLANNING

ACP – why is it importantACP – why is it important

Not yet getting it right with care Not yet getting it right with care towards the end of lifetowards the end of life

Pre-planning of care a means to Pre-planning of care a means to improve thisimprove this

Close relationship to implementation Close relationship to implementation of Mental Capacity Actof Mental Capacity Act

Research Evidence that it is of Research Evidence that it is of benefit to patients.benefit to patients.

Used extensively across the worldUsed extensively across the world Enables better provision of service Enables better provision of service

related to pt needrelated to pt need Empowers and enables pt and familyEmpowers and enables pt and family Some find it increases ‘realistic Some find it increases ‘realistic

hope’ and resiliencehope’ and resilience Encourages deeper conversations at Encourages deeper conversations at

an important timean important time

The Calman GapThe Calman Gap(Journal Medical ethics, 84,10,124 -127)(Journal Medical ethics, 84,10,124 -127)

EXPECTATION

REALITY

Goals of ACPGoals of ACP

Ensuring that clinical care is in Ensuring that clinical care is in keeping with patients preferences keeping with patients preferences when the patient has become when the patient has become incapable of decision makingincapable of decision making

Improving the health care decision Improving the health care decision making process by facilitating making process by facilitating shared decision makingshared decision making

Improving patients’ well being by Improving patients’ well being by reducing the frequency of either reducing the frequency of either under or over treatmentunder or over treatment

Research EvidenceResearch Evidence Associated with death in place of choice Associated with death in place of choice

and use of palliative careand use of palliative care1-31-3

May increase a sense of control May increase a sense of control 44

May increase congruence between May increase congruence between preferences and treatmentspreferences and treatments 5,6 5,6

Narrow interventions focusing on AD Narrow interventions focusing on AD completion not as successful as completion not as successful as complex,multiple interventionscomplex,multiple interventions

1. Ratner E et al 1. Ratner E et al Jof the American Geriatric SocietyJof the American Geriatric Society 2001:49; 778 2001:49; 778 2. Dengenholtz HB et al 2. Dengenholtz HB et al Annals of internal medicine Annals of internal medicine 2004:141; 113-1172004:141; 113-117 3. Caplan GA et al 3. Caplan GA et al Age and Ageing Age and Ageing 2006 ; 35:581-5852006 ; 35:581-585 4. Morrison RS et al 4. Morrison RS et al J of the American Geriatric Society J of the American Geriatric Society 2005 :53(2): 290-2942005 :53(2): 290-294 5. Hammes b, Rooney B.5. Hammes b, Rooney B.Archives of Internal Medicine Archives of Internal Medicine 1998 ; 158:383-3901998 ; 158:383-390 6. Molloy DW et al 6. Molloy DW et al JAMA 2000JAMA 2000 :283(102): 1437-1444 :283(102): 1437-1444

Research EvidenceResearch Evidence

ACP may improve patients quality of life by ACP may improve patients quality of life by contributing to:contributing to:

Mutual understandingMutual understanding Enhancing openessEnhancing openess Enabling discussion of concernsEnabling discussion of concerns Enhancing hopeEnhancing hope Relieving fears about the ‘burden’ of Relieving fears about the ‘burden’ of

decision makingdecision making Strengthening family tiesStrengthening family ties

Models of Advanced Care Models of Advanced Care PlanningPlanning

TraditionalTraditionalPurposePurposePrepare for incapacityPrepare for incapacity

FocusFocusWritten Advanced Written Advanced

DirectiveDirective(refusal of treatments)(refusal of treatments)

ContextContextDoctor/patient Doctor/patient

relationshiprelationship

DevelopingDevelopingPreparing for deathPreparing for deathAchieving control, dignityAchieving control, dignityStrengthening Strengthening

relationshipsrelationshipsRelieving burden of Relieving burden of

decision makingdecision making

Wider focus eg Wider focus eg preferences around preferences around place of care, things you place of care, things you would likewould like

Patient/family/professional Patient/family/professional carerscarers

What should be includedWhat should be included Advanced care planning should emphasise Advanced care planning should emphasise

not the completion of directives but the not the completion of directives but the emotional preparation of patients and emotional preparation of patients and families for future crises…families for future crises…

Then when the crisis hits ,physicians should Then when the crisis hits ,physicians should provide guidance, should help make provide guidance, should help make decisions despite the inevitable uncertainty, decisions despite the inevitable uncertainty, should share responsibility for those should share responsibility for those decisions, and above all should courageously decisions, and above all should courageously see patients through the fearsome experience see patients through the fearsome experience of dying.of dying.

Controlling death – the false promise of Advanced Directives.Controlling death – the false promise of Advanced Directives.Harold S Perkins Annals Int Med 07 147:51-57Harold S Perkins Annals Int Med 07 147:51-57

What should be includedWhat should be included

Do you know what is likely to happen to this Do you know what is likely to happen to this patient in the future?patient in the future?

- immediate, hrs - days - weeks- immediate, hrs - days - weeks

- short term, weeks - months- short term, weeks - months

- longer term, months - years - longer term, months - years What would the patients preferences be in What would the patients preferences be in

these circumstancesthese circumstances How important is it to communicate this to How important is it to communicate this to

othersothers How will you do that?How will you do that?

What should be coveredWhat should be covered(professionals viewpoint)(professionals viewpoint)

Patients understanding, do they want or Patients understanding, do they want or need more informationneed more information

How much do they like to be involved in How much do they like to be involved in decisions and planning caredecisions and planning care

Who would they want us to talk to if they Who would they want us to talk to if they weren’t well enoughweren’t well enough

Any ADRT or LPA ?Any ADRT or LPA ? Where does the patient want to be cared Where does the patient want to be cared

for/die.for/die. Hospital admissions – when would they be Hospital admissions – when would they be

appropriate, when not.appropriate, when not.

What should be coveredWhat should be covered(professionals viewpoint)(professionals viewpoint)

Are there specific disease related Are there specific disease related issuesissues

-- chemotherapychemotherapy

-- PEG feedingPEG feeding

-- ventilationventilation

-- antibioticsantibiotics

What should be coveredWhat should be covered(professionals viewpoint)(professionals viewpoint)

Is it appropriate to discuss CPRIs it appropriate to discuss CPR

Are anticipatory drugs neededAre anticipatory drugs needed

What should be coveredWhat should be covered(professionals viewpoint)(professionals viewpoint)

Who else needs to knowWho else needs to know

-- OOHOOH

-- Family/carersFamily/carers

-- health care team health care team (GP/DN/Consultant)(GP/DN/Consultant)

Making it happenMaking it happen‘normalising the process’‘normalising the process’

What is your organisation doing ?What is your organisation doing ?

-- sign up from seniorssign up from seniors-- postersposters-- information : staff and patientsinformation : staff and patients-- staff awareness and trainingstaff awareness and training-- systems in place (PPC and systems in place (PPC and others)others)

MDT Review : - SPC MDT

- Gold Standards

- Other

HAS ANYONE STARTED ‘THE CONVERSATION?’Any more information/decisions since last review?

Documented? WhereCovered?Any information need sharing, how?Areas to be f/u or addressed?Arrangements for f/u discussions and review

Who is best placed to start it?

Yes No

MAKING IT HAPPEN

Timing: possible trigger Timing: possible trigger pointspoints

Life changing events eg death of a Life changing events eg death of a spousespouse

Following new diagnosis of life Following new diagnosis of life limiting conditionlimiting condition

Assessment of a persons needsAssessment of a persons needs Placing on Gold Standards RegisterPlacing on Gold Standards Register Multiple hospital admissionsMultiple hospital admissions Admissions to a care homeAdmissions to a care home

But…Cultural and But…Cultural and Psychological ChallengesPsychological Challenges

Sensitive to cultural interpretationsSensitive to cultural interpretations

Changing views over timeChanging views over time

Clash of viewpointsClash of viewpoints

The impact of a ‘bad news’ interviewThe impact of a ‘bad news’ interview

A desire to ‘live for the moment’ or ‘take A desire to ‘live for the moment’ or ‘take one day at a time’one day at a time’

DifficultiesDifficulties

PrognosticationPrognostication

Difficult discussionsDifficult discussions

Making timeMaking time

‘‘Death Anxiety’ of staffDeath Anxiety’ of staff

Communication Skills – Communication Skills – being PREPAREDbeing PREPARED

P – P – prepare for the discussionprepare for the discussion R – R – relate to the personrelate to the person E – E – elicit pt and carer preferenceselicit pt and carer preferences P – P – provide informationprovide information A –A – acknowledge emotions and concerns acknowledge emotions and concerns R – R – realistic hoperealistic hope E – E – encourage questionsencourage questions D – D – documentdocument

Eliciting patients Eliciting patients preferencespreferences

General attitudes to health and careGeneral attitudes to health and care

How do they like to be involved in decisionsHow do they like to be involved in decisions

who else do they normally involve in decisionswho else do they normally involve in decisions

values questionsvalues questions

Open questioningOpen questioning

Can you tell me about your current illness and Can you tell me about your current illness and how you are feeling?how you are feeling?

Who is the most significant person in your lifeWho is the most significant person in your life Could you tell me what the most important Could you tell me what the most important

things are to you at the momentthings are to you at the moment What fears or worries if any do you have about What fears or worries if any do you have about

the futurethe future Have you thought about where you would Have you thought about where you would

prefer to be cared for as your illness affects prefer to be cared for as your illness affects you moreyou more