ADVANCE CARE PLANNINGADVANCE CARE PLANNING

What is advance care planningWhat is advance care planning Why has it risen on the agenda nationallyWhy has it risen on the agenda nationally Whats the evidence Whats the evidence Experience from other countriesExperience from other countries UK experienceUK experience What would be good practice hereWhat would be good practice here Case studiesCase studies How can we make it happen?How can we make it happen?

Advance Care PlanningAdvance Care Planning

a a processprocess of discussion between an individual and their of discussion between an individual and their care providers care providers

The process is voluntary The process is voluntary The content should be determined by the individualThe content should be determined by the individual

with agreement discussions should be: with agreement discussions should be: documented documented regularly reviewed regularly reviewed communicated to key persons involved in their communicated to key persons involved in their carecare

Advance Care PlanningAdvance Care Planning

embraces a range ofembraces a range of

written recorded oral expressions of future written recorded oral expressions of future

preferences for care and treatmentpreferences for care and treatment

general reflection of a person’s hopes, general reflection of a person’s hopes, general beliefs/values and wishes for caregeneral beliefs/values and wishes for care

Advanced Care Planning Advanced Care Planning discussionsdiscussions

might include: might include:

individual’s concernsindividual’s concerns values or personal goals for carevalues or personal goals for care understanding about illness prognosis understanding about illness prognosis preferences for care or treatments in the preferences for care or treatments in the

futurefuture

Why ACP is on the AgendaWhy ACP is on the Agenda

We die old, sick and after a substantial We die old, sick and after a substantial period of disabilityperiod of disability

Capacity issues will increase as dementia Capacity issues will increase as dementia incidence increasesincidence increases

Increasing medical and technological Increasing medical and technological advances make intervention and sometimes advances make intervention and sometimes prolongation of life possibleprolongation of life possible

Ethics of health care resourcesEthics of health care resources

National perspectiveNational perspective

Choice Agenda Choice Agenda

End of life strategyEnd of life strategy

Nice SPC 2004Nice SPC 2004

DarziDarzi

Mental Capacity ActMental Capacity Act

National perspective - ChoiceNational perspective - Choice

‘‘Building on the Best, Choice, Building on the Best, Choice, Responsiveness and Equity’ 2003 Responsiveness and Equity’ 2003

all adult patients nearing the end of life will all adult patients nearing the end of life will have access to high quality palliative care have access to high quality palliative care and live and die in the place of their choice and live and die in the place of their choice

‘‘CHOICE’CHOICE’

Choice and health - exploring the pros and Choice and health - exploring the pros and cons of the government choice agenda :cons of the government choice agenda :

people are unaware of the choices people are unaware of the choices available, and feel ill-equipped to make available, and feel ill-equipped to make choices.choices.

(Which 2005)(Which 2005)

National End of Life Care StrategyNational End of Life Care StrategySummer 2008Summer 2008

Will emphasise Will emphasise – care in the communitycare in the community– choice esp. in place of dyingchoice esp. in place of dying

Use of pathways and tools: Use of pathways and tools: 1.1.Gold Standards Framework (primary care and care homes) Gold Standards Framework (primary care and care homes)

2.2.Liverpool Care Pathway (all settings)Liverpool Care Pathway (all settings)

3.3.Preferred Priorities of CarePreferred Priorities of Care

End of life care in care homesEnd of life care in care homes Measurement of quality and outcomesMeasurement of quality and outcomes

‘‘End of Life Care Programme’ End of Life Care Programme’ DOH 2004DOH 2004

‘ ‘Improve the quality of care at the end of life for Improve the quality of care at the end of life for all patients and enable more patients to live and all patients and enable more patients to live and die in the place of their choice’die in the place of their choice’

““The most important objective is to ensure that people’sThe most important objective is to ensure that people’sindividual needs, their priorities, their preferences for endindividual needs, their priorities, their preferences for endof life care are identified, they are documented, they areof life care are identified, they are documented, they arereviewed, they are respected and acted upon whereverreviewed, they are respected and acted upon whereverpossible. Now that message has to go out everywherepossible. Now that message has to go out everywherewithin the NHS and I think that’s the important startingwithin the NHS and I think that’s the important startingpoint for everything else…”point for everything else…”Alan Johnson, Secretary of State for Health, speaking on Alan Johnson, Secretary of State for Health, speaking on

Radio 4’sRadio 4’sToday Today programme at the launch of the End of Life programme at the launch of the End of Life Care strategy, in July 2008Care strategy, in July 2008

DarziDarzi

Lord Darzi’s NHS Next Stage Review focusing on Lord Darzi’s NHS Next Stage Review focusing on end of life careend of life care

Advanced care planning needs to be undertaken Advanced care planning needs to be undertaken for all individuals with incurable progressive for all individuals with incurable progressive diseases, diseases,

with the aim of seeing a significant shift in with the aim of seeing a significant shift in achieving patients preferred place of dying.achieving patients preferred place of dying.

NICENICE

Teams should ensure:Teams should ensure: patients’ and carers’ involvement in decision making about patients’ and carers’ involvement in decision making about

carecare

This should includeThis should include eliciting patients’ own knowledge about condition, eliciting patients’ own knowledge about condition,

treatment, caretreatment, care Establishing how much and which decisions they would like Establishing how much and which decisions they would like

a say ina say in Preferences should be assessed on an ongoing basis. Preferences should be assessed on an ongoing basis. Recording and sharing this informationRecording and sharing this information

Advanced care planning and the Advanced care planning and the mental capacity actmental capacity act

Advanced Care planning

ADRTStatement of wishes and preferences

Lasting power Of attorney

Advance decisions to refuse Advance decisions to refuse treatmenttreatment

Use to be called ‘living wills or advanced Use to be called ‘living wills or advanced directives’directives’

Requirements quite specific in stating exactly Requirements quite specific in stating exactly which treatments and what circumstanceswhich treatments and what circumstances

Have to be in writing if they are refusal of life Have to be in writing if they are refusal of life sustaining treatments sustaining treatments

Must acknowledge that refusal has the potential to Must acknowledge that refusal has the potential to limit lifelimit life

Only come into force when an individual loses Only come into force when an individual loses capacitycapacity

Are legally binding if applicableAre legally binding if applicable

Mental Capacity ActMental Capacity Act

STATUTORY CHECKLIST FOR BEST INTERESTSSTATUTORY CHECKLIST FOR BEST INTERESTS

• • Not Not merely by reference to age, appearance, condition, or aspect of merely by reference to age, appearance, condition, or aspect of behaviour,behaviour,

• • Consider:Consider: – – Person’s past & present wishes & feelings, beliefs and valuesPerson’s past & present wishes & feelings, beliefs and values (including any written statement)(including any written statement) – – Any other factors P would consider if able toAny other factors P would consider if able to

• • Take account, if practicable, of the views of:Take account, if practicable, of the views of: -Any holder of an LPA or any Court Appointed Deputy-Any holder of an LPA or any Court Appointed Deputy - Anyone named by P as someone to be consulted- Anyone named by P as someone to be consulted – – Anyone engaged in caring for P or interested in his welfareAnyone engaged in caring for P or interested in his welfare

Preferred place of dyingPreferred place of dying

Most studies have found that around 75% of Most studies have found that around 75% of adults want to die at homeadults want to die at home

A range of studies have found that between A range of studies have found that between 50 -70% of those receiving care with a 50 -70% of those receiving care with a serious illness also say they would prefer serious illness also say they would prefer home care at the end of lifehome care at the end of life

Place of DeathPlace of Death

ONS = Office of national statistics EnglandONS = Office of national statistics EnglandBradford district = Bradford and AiredaleBradford district = Bradford and AiredaleSPC = patients who died with specialist palliative care team involvementSPC = patients who died with specialist palliative care team involvement

Place of DeathPlace of DeathONSONS

(2004)(2004)Bradford District Bradford District

(2004)(2004)SPCSPC

(2004)(2004)

HospitalHospital 58%58% 48%48% 32%32%

Nursing homeNursing home 18%18% 18%18% 5%5%

HomeHome 18%18% 20%20% 26%26%

HospiceHospice 4%4% 7%7% 34%34%

ACP – why is it importantACP – why is it important

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

Pre-planning of care is a means to improve Pre-planning of care is a means to improve thisthis

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

Used extensively across the worldUsed extensively across the world Can enable better provision of service Can enable 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 hope’ and Some find it increases ‘realistic hope’ and

resilienceresilience Encourages deeper conversations at an Encourages deeper conversations at an

important timeimportant time

Research EvidenceResearch Evidence

Associated with death in place of Associated with death in place of choice and use of palliative carechoice and 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

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

Most of the general public is supportive of Most of the general public is supportive of ACP ACP

Most health and social care professionals Most health and social care professionals have a positive attitude towards ithave a positive attitude towards it

Doctors have the most reservationsDoctors have the most reservations

Research EvidenceResearch Evidence

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

JAMA. 2008;300(14):1665-1673JAMA. 2008;300(14):1665-1673End-of-life discussions are associated with less aggressive medical care near death .

Aggressive care is associated with worse patient quality of life and worse bereavement adjustment.

Goals of ACPGoals of ACP

Ensuring that clinical and other care is in Ensuring that clinical and other care is in keeping with patients preferences when the keeping with patients preferences when the patient has become incapable of decision patient has become incapable of decision makingmaking

Improving the process for shared health Improving the process for shared health care decision makingcare decision making

Reducing the frequency of under or over Reducing the frequency of under or over treatmenttreatment

What could be includedWhat could be included

Patients – prefer outcome orientated Patients – prefer outcome orientated statements rather than directives about statements rather than directives about specific treatments in specific circumstancesspecific treatments in specific circumstances

Professionals – may find these difficult to Professionals – may find these difficult to interpret.interpret.

What could be includedWhat could be included

Preferences egPreferences eg

– – who to talk to/ who not to talk towho to talk to/ who not to talk to

- whether you want / have a ADRT- whether you want / have a ADRT

- Whether you want / have an LPA- Whether you want / have an LPA

- views on life sustaining treatment eg - views on life sustaining treatment eg CPR,ventilation,artificial feedingCPR,ventilation,artificial feeding

- where you want to be cared for or die- where you want to be cared for or die

What could be includedWhat could be included

““If I am being washed, I prefer showers to bathsIf I am being washed, I prefer showers to baths • • I am allergic to lanolin; please don’t put me in lambswoolI am allergic to lanolin; please don’t put me in lambswool clothes or give me hand cream with lanolin in itclothes or give me hand cream with lanolin in it • • I hate boiled eggs, and I love BovrilI hate boiled eggs, and I love Bovril • • I want to stay at home as long as I canI want to stay at home as long as I can • • I don’t like EastEnders. Never have. Never will.I don’t like EastEnders. Never have. Never will. • • I like the Rolling Stones. And I like The ArchersI like the Rolling Stones. And I like The Archers • • I love dogsI love dogs • • I am frightened of injections and needlesI am frightened of injections and needles • • Please could my grandson look after the cat?”Please could my grandson look after the cat?”

Advance Care Planning - risksAdvance Care Planning - risks

Don’t forget it’s the patients choiceDon’t forget it’s the patients choice• • People are People are NOT NOT required to make advance care plans,required to make advance care plans, or ADRT, or LPAsor ADRT, or LPAs• • Risks:Risks:

– – asking at inappropriate times or in an inappropriateasking at inappropriate times or in an inappropriatewayway– – forcing people to have discussions they do not want to forcing people to have discussions they do not want to havehave – – increasing rather than reducing distressincreasing rather than reducing distress– – painting by numbers: whose canvas is it?painting by numbers: whose canvas is it?– – quality of care will be judged by numbers of advance care quality of care will be judged by numbers of advance care plans. They are a tool not an outcomeplans. They are a tool not an outcome

Professionals – Approach to ACPProfessionals – Approach to ACP

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

Professionals approach to ACP Professionals approach to ACP discussiondiscussion

Prepare for discussionPrepare for discussion

– –Understand the patient and familyUnderstand the patient and family

– –Understand the patient’s condition and Understand the patient’s condition and prognosisprognosis

2. Determine what the patient and family 2. Determine what the patient and family knowknow

– – re: condition, prognosisre: condition, prognosis 3. Explore goals, hopes and expectations3. Explore goals, hopes and expectations

4. Suggest realistic goals4. Suggest realistic goals 5. Respond empathetically5. Respond empathetically 6. Complete and sign PPC/DNAR/OOH 6. Complete and sign PPC/DNAR/OOH 8. Review and revise periodically8. Review and revise periodically

Patient responses to ACPPatient responses to ACP

Has not and does not want to discussHas not and does not want to discuss

Wants to discuss some but not all aspectsWants to discuss some but not all aspects

Would like to make a verbal statement about Would like to make a verbal statement about their wishestheir wishes

Would like to document their wishesWould like to document their wishes

Medical Orders for Medical Orders for Life-Life-SustainingTreatmentSustainingTreatment

• • Created by the Created by the Community-wide End-Community-wide End-of-Life/Palliative Care of-Life/Palliative Care Initiative in 2003Initiative in 2003

• • Adapted from Adapted from Oregon’s POLSTOregon’s POLST

• • Combines DNR, DNI, Combines DNR, DNI, and and otherLifeSustaining otherLifeSustaining TreatmentsTreatments

• • Incorporates NYS lawIncorporates NYS law

POLSTPOLST

POLST in Long-Term Care SettingsPOLST in Long-Term Care Settings– No one received unwanted CPR, ICU care, or No one received unwanted CPR, ICU care, or

ventilator support (Tolle et al., 1998)ventilator support (Tolle et al., 1998)– Treatment matched POLST instructions Treatment matched POLST instructions

regarding CPR (91%) antibiotics (86%), IV fluids regarding CPR (91%) antibiotics (86%), IV fluids (84%), feeding tubes (94%), and medical (84%), feeding tubes (94%), and medical interventions (46%)interventions (46%) 20% received more invasive medical interventions 20% received more invasive medical interventions

(Lee et al., 2000)(Lee et al., 2000)

POLSTPOLST

POLST in Long-Term Care SettingsPOLST in Long-Term Care Settings– POLST accurately conveys treatment POLST accurately conveys treatment

preferences 90% of time (Meyers et al., 2004)preferences 90% of time (Meyers et al., 2004)– Resuscitation status does not indicate Resuscitation status does not indicate

preferences (Hickman et al., 2004)preferences (Hickman et al., 2004) 77% with DNR had order for more than the lowest 77% with DNR had order for more than the lowest

level of treatment in at least one other category. level of treatment in at least one other category. 47% with full code had orders for less than the 47% with full code had orders for less than the

highest level of treatment in at least one other highest level of treatment in at least one other categorycategory

POLSTPOLST

POLST and EMSPOLST and EMS– POLST changed treatment in 45% of cases POLST changed treatment in 45% of cases – 91% agreed POLST is useful in determining 91% agreed POLST is useful in determining

what to do when patient pulseless, apneic what to do when patient pulseless, apneic (Schmidt et al., 2004)(Schmidt et al., 2004)

– University of Washington, Vancouver grad University of Washington, Vancouver grad student looking at use in emergency department student looking at use in emergency department and when deviate from POLSTand when deviate from POLST

United Kingdom ExperienceUnited Kingdom Experience

Preferred priorities of CarePreferred priorities of Care

Expressions of health care preferencesExpressions of health care preferences

Peer MentoringPeer Mentoring

RCP guidanceRCP guidance

My ExperienceMy Experience

Most patients value the discussionsMost patients value the discussions Most patients have wanted me to document their Most patients have wanted me to document their

wishes in medical records and communicate it to wishes in medical records and communicate it to others involved in their careothers involved in their care

Most patients don’t want to make an LPA or ADRTMost patients don’t want to make an LPA or ADRT Most patients have not wanted to use the PPC Most patients have not wanted to use the PPC

document document People can usually express a preference for People can usually express a preference for

where they would like to be cared for or diewhere they would like to be cared for or die

Making it happenMaking it happen

Identifying patients in a timely fashionIdentifying patients in a timely fashion

Having knowledge of how an illness may Having knowledge of how an illness may affect a person in the long termaffect a person in the long term

Who is best placed to have these Who is best placed to have these discussionsdiscussions

How can we facilitate patient How can we facilitate patient discussion and choicediscussion and choice

Presenting scenariosPresenting scenarios Health care preferences questionnaireHealth care preferences questionnaire Discussing patients views of how peers Discussing patients views of how peers

have been cared forhave been cared for Longer term raising public awareness and Longer term raising public awareness and

encouraging them to discuss with family encouraging them to discuss with family membersmembers

Where and when should they happenWhere and when should they happen

Where should they be recordedWhere should they be recorded

How should they be communicated to othersHow should they be communicated to others

Need for cross organisation work with senior Need for cross organisation work with senior supportsupport

Having a system that works requireHaving a system that works require

Staff training and confidenceStaff training and confidence Recognisable documentationRecognisable documentation Systems for identifying patients to have Systems for identifying patients to have

discussions withdiscussions with Ways of updating discussionsWays of updating discussions Ways of tagging whether a person has an Ways of tagging whether a person has an

advance care plan and where it is keptadvance care plan and where it is kept Commitment across services to contributeCommitment across services to contribute

Available Guidance - ProfessionalAvailable Guidance - Professional

Advance Care Planning – a guide to Health Advance Care Planning – a guide to Health and social care staffand social care staff

RCP Concise Guidance to good practiceRCP Concise Guidance to good practice(a series of evidence based guidelines for clinical management)(a series of evidence based guidelines for clinical management)

Advance Care Planning – National Guidance (number 12)Advance Care Planning – National Guidance (number 12)

ADRT.nhsADRT.nhs

The Mental Capacity Act in Practice: The Mental Capacity Act in Practice: Guidance for End of Life Care – National Guidance for End of Life Care – National Hospice CouncilHospice Council

Planning for your future care – a guide NHS Planning for your future care – a guide NHS EOL program April 09EOL program April 09