EEPPEECC

EEPPEECC

Goals of Care Goals of CareModule 7Module 7Module 7Module 7

The Project to Educate Physicians on End-of-life CareSupported by the American Medical Association andthe Robert Wood Johnson Foundation

The Project to Educate Physicians on End-of-life CareSupported by the American Medical Association andthe Robert Wood Johnson Foundation

Objectives . . .Objectives . . . Understand the different goals and Understand the different goals and

how they interrelate and changehow they interrelate and change

Understand how to use the 7-step Understand how to use the 7-step protocol to negotiate goals of careprotocol to negotiate goals of care

Be able to communicate prognosis Be able to communicate prognosis and its uncertaintyand its uncertainty

Understand how to tell the truth and Understand how to tell the truth and identify reasonable hopeidentify reasonable hope

Understand the different goals and Understand the different goals and how they interrelate and changehow they interrelate and change

Understand how to use the 7-step Understand how to use the 7-step protocol to negotiate goals of careprotocol to negotiate goals of care

Be able to communicate prognosis Be able to communicate prognosis and its uncertaintyand its uncertainty

Understand how to tell the truth and Understand how to tell the truth and identify reasonable hopeidentify reasonable hope

. . . Objectives. . . Objectives Be able to use language effectivelyBe able to use language effectively

Be able to set limits on unreasonable Be able to set limits on unreasonable goalsgoals

Be able to adjust care and Be able to adjust care and communication according to culturecommunication according to culture

Understand how to identify goals Understand how to identify goals when patients lack capacitywhen patients lack capacity

Be able to use language effectivelyBe able to use language effectively

Be able to set limits on unreasonable Be able to set limits on unreasonable goalsgoals

Be able to adjust care and Be able to adjust care and communication according to culturecommunication according to culture

Understand how to identify goals Understand how to identify goals when patients lack capacitywhen patients lack capacity

Introduction . . .Introduction . . .

Every one has a personal sense ofEvery one has a personal sense of

who we arewho we are

what we like to dowhat we like to do

control we like to havecontrol we like to have

goals for our livesgoals for our lives

things we hope forthings we hope for

Every one has a personal sense ofEvery one has a personal sense of

who we arewho we are

what we like to dowhat we like to do

control we like to havecontrol we like to have

goals for our livesgoals for our lives

things we hope forthings we hope for

. . . Introduction. . . Introduction

Hope, goals, expectations change Hope, goals, expectations change with illnesswith illness

Physician’s role to clarify goals, Physician’s role to clarify goals, treatment plantreatment plan

Hope, goals, expectations change Hope, goals, expectations change with illnesswith illness

Physician’s role to clarify goals, Physician’s role to clarify goals, treatment plantreatment plan

Potential goals of carePotential goals of care

Cure of diseaseCure of disease

Avoidance of Avoidance of premature death premature death

Maintenance or Maintenance or improvement in improvement in functionfunction

Prolongation of lifeProlongation of life

Cure of diseaseCure of disease

Avoidance of Avoidance of premature death premature death

Maintenance or Maintenance or improvement in improvement in functionfunction

Prolongation of lifeProlongation of life

Relief of sufferingRelief of suffering

Quality of lifeQuality of life

Staying in controlStaying in control

A good death A good death

Support for Support for families and loved families and loved onesones

Relief of sufferingRelief of suffering

Quality of lifeQuality of life

Staying in controlStaying in control

A good death A good death

Support for Support for families and loved families and loved onesones

Historically, a dichotomous division of goals of care

Historically, a dichotomous division of goals of care Focus on curing illnessFocus on curing illness

Little attention to relief of suffering, Little attention to relief of suffering, care of dyingcare of dying

Hospice / palliative care arose in Hospice / palliative care arose in response to a needresponse to a need

Focus on curing illnessFocus on curing illness

Little attention to relief of suffering, Little attention to relief of suffering, care of dyingcare of dying

Hospice / palliative care arose in Hospice / palliative care arose in response to a needresponse to a need

Relieve suffering (hospice)Relieve suffering (hospice)

Curative / life-prolonging therapyCurative / life-prolonging therapy

PresentationPresentation DeathDeath

Figure 1: A dichotomous intentFigure 1: A dichotomous intent

Multiple goals of careMultiple goals of care

Multiple goals often apply Multiple goals often apply simultaneouslysimultaneously

Goals are often contradictoryGoals are often contradictory

Certain goals may take priority over Certain goals may take priority over othersothers

Multiple goals often apply Multiple goals often apply simultaneouslysimultaneously

Goals are often contradictoryGoals are often contradictory

Certain goals may take priority over Certain goals may take priority over othersothers

Goals may changeGoals may change

Some take precedence over othersSome take precedence over others

The shift in focus of careThe shift in focus of care

is gradualis gradual

is an expected part of the continuum of is an expected part of the continuum of medical caremedical care

Some take precedence over othersSome take precedence over others

The shift in focus of careThe shift in focus of care

is gradualis gradual

is an expected part of the continuum of is an expected part of the continuum of medical caremedical care

Curative / life-prolonging therapyCurative / life-prolonging therapy

PresentationPresentation DeathDeath

Relieve suffering (palliative care)Relieve suffering (palliative care)

Figure 2: The interrelationship of therapies with Figure 2: The interrelationship of therapies with curative and palliative intentcurative and palliative intent

Palliative care: expanding the options . . .Palliative care: expanding the options . . . Interdisciplinary careInterdisciplinary care

Symptom controlSymptom control

Supportive careSupportive care

Interdisciplinary careInterdisciplinary care

Symptom controlSymptom control

Supportive careSupportive care

. . . Palliative care: expanding the options. . . Palliative care: expanding the options Any life-threatening diagnosisAny life-threatening diagnosis

Anytime during illnessAnytime during illness

Whenever patient / family prepared to Whenever patient / family prepared to accept itaccept it

May be combined with curative May be combined with curative therapiestherapies

May be focus of careMay be focus of care

Any life-threatening diagnosisAny life-threatening diagnosis

Anytime during illnessAnytime during illness

Whenever patient / family prepared to Whenever patient / family prepared to accept itaccept it

May be combined with curative May be combined with curative therapiestherapies

May be focus of careMay be focus of care

7-step protocol to negotiate goals of care . . .7-step protocol to negotiate goals of care . . .

1.1. Create the right setting Create the right setting

2.2. Determine what the patient and Determine what the patient and family knowfamily know

3.3. Explore what they are expecting or Explore what they are expecting or hoping forhoping for

1.1. Create the right setting Create the right setting

2.2. Determine what the patient and Determine what the patient and family knowfamily know

3.3. Explore what they are expecting or Explore what they are expecting or hoping forhoping for

. . . 7-step protocol to negotiate goals of care. . . 7-step protocol to negotiate goals of care

4. 4. Suggest realistic goalsSuggest realistic goals

5.5. Respond empathically Respond empathically

6.6. Make a plan and follow-through Make a plan and follow-through

7.7. Review and revise periodically, as Review and revise periodically, as appropriateappropriate

4. 4. Suggest realistic goalsSuggest realistic goals

5.5. Respond empathically Respond empathically

6.6. Make a plan and follow-through Make a plan and follow-through

7.7. Review and revise periodically, as Review and revise periodically, as appropriateappropriate

Communicating prognosisCommunicating prognosis Markedly over-estimate prognosisMarkedly over-estimate prognosis

Helps patient / family cope, planHelps patient / family cope, plan

increase access to hospice, other increase access to hospice, other servicesservices

Offer a range or average for life Offer a range or average for life expectancyexpectancy

Markedly over-estimate prognosisMarkedly over-estimate prognosis

Helps patient / family cope, planHelps patient / family cope, plan

increase access to hospice, other increase access to hospice, other servicesservices

Offer a range or average for life Offer a range or average for life expectancyexpectancy

Truth-telling and maintaining hopeTruth-telling and maintaining hope False hope may deflect from other False hope may deflect from other

important issuesimportant issues

True clinical skill to help find hope True clinical skill to help find hope for realistic goalsfor realistic goals

False hope may deflect from other False hope may deflect from other important issuesimportant issues

True clinical skill to help find hope True clinical skill to help find hope for realistic goalsfor realistic goals

Language with unintended consequencesLanguage with unintended consequences Do you want us to do everything Do you want us to do everything

possible?possible?

Will you agree to discontinue care?Will you agree to discontinue care?

It’s time we talk about pulling backIt’s time we talk about pulling back

I think we should stop aggressive I think we should stop aggressive therapytherapy

I’m going to make it so he won’t sufferI’m going to make it so he won’t suffer

Do you want us to do everything Do you want us to do everything possible?possible?

Will you agree to discontinue care?Will you agree to discontinue care?

It’s time we talk about pulling backIt’s time we talk about pulling back

I think we should stop aggressive I think we should stop aggressive therapytherapy

I’m going to make it so he won’t sufferI’m going to make it so he won’t suffer

Language to describethe goals of care . . .Language to describethe goals of care . . . I want to give the best care possible I want to give the best care possible

until the day you dieuntil the day you die

We will concentrate on improving the We will concentrate on improving the quality of your child’s lifequality of your child’s life

We want to help you live We want to help you live meaningfully in the time that you meaningfully in the time that you havehave

I want to give the best care possible I want to give the best care possible until the day you dieuntil the day you die

We will concentrate on improving the We will concentrate on improving the quality of your child’s lifequality of your child’s life

We want to help you live We want to help you live meaningfully in the time that you meaningfully in the time that you havehave

Language to describethe goals of care . . .Language to describethe goals of care . . . I’ll do everything I can to help you I’ll do everything I can to help you

maintain your independencemaintain your independence

I want to ensure that your father I want to ensure that your father receives the kind of treatment he receives the kind of treatment he wantswants

Your child’s comfort and dignity will Your child’s comfort and dignity will be my top prioritybe my top priority

I’ll do everything I can to help you I’ll do everything I can to help you maintain your independencemaintain your independence

I want to ensure that your father I want to ensure that your father receives the kind of treatment he receives the kind of treatment he wantswants

Your child’s comfort and dignity will Your child’s comfort and dignity will be my top prioritybe my top priority

. . . Language to describethe goals of care. . . Language to describethe goals of care I will focus my efforts on treating I will focus my efforts on treating

your symptomsyour symptoms

Let’s discuss what we can do to Let’s discuss what we can do to fulfill your wish to stay at homefulfill your wish to stay at home

Let’s discuss what we can do to have Let’s discuss what we can do to have your child die at homeyour child die at home

I will focus my efforts on treating I will focus my efforts on treating your symptomsyour symptoms

Let’s discuss what we can do to Let’s discuss what we can do to fulfill your wish to stay at homefulfill your wish to stay at home

Let’s discuss what we can do to have Let’s discuss what we can do to have your child die at homeyour child die at home

Cultural differencesCultural differences

Who gets the information?Who gets the information?

How to talk about information?How to talk about information?

Who makes decisions?Who makes decisions?

Ask the patientAsk the patient

Consider a family meetingConsider a family meeting

Who gets the information?Who gets the information?

How to talk about information?How to talk about information?

Who makes decisions?Who makes decisions?

Ask the patientAsk the patient

Consider a family meetingConsider a family meeting

Determine specific prioritiesDetermine specific priorities Based on values, preferences, Based on values, preferences,

clinical circumstancesclinical circumstances

Influenced by information from Influenced by information from physician, team membersphysician, team members

Based on values, preferences, Based on values, preferences, clinical circumstancesclinical circumstances

Influenced by information from Influenced by information from physician, team membersphysician, team members

Reviewing goals,treatment prioritiesReviewing goals,treatment priorities Goals guide careGoals guide care

Assess priorities to develop initial Assess priorities to develop initial plan of careplan of care

Review with any change inReview with any change in

health statushealth status

advancing illnessadvancing illness

setting of caresetting of care

treatment preferencestreatment preferences

Goals guide careGoals guide care

Assess priorities to develop initial Assess priorities to develop initial plan of careplan of care

Review with any change inReview with any change in

health statushealth status

advancing illnessadvancing illness

setting of caresetting of care

treatment preferencestreatment preferences

When the physician cannot support a patient’s choicesWhen the physician cannot support a patient’s choices

Typically occurs when goals are Typically occurs when goals are unreasonable, illegalunreasonable, illegal

Set limits without implying Set limits without implying abandonmentabandonment

Make the conflict explicitMake the conflict explicit

Try to find an alternate solutionTry to find an alternate solution

Typically occurs when goals are Typically occurs when goals are unreasonable, illegalunreasonable, illegal

Set limits without implying Set limits without implying abandonmentabandonment

Make the conflict explicitMake the conflict explicit

Try to find an alternate solutionTry to find an alternate solution

Reassess decision-making capacity . . .Reassess decision-making capacity . . . Implies the ability to understand and Implies the ability to understand and

make own decisionmake own decision

Patient must Patient must

understand informationunderstand information

use the information rationallyuse the information rationally

appreciate the consequences appreciate the consequences

come to a reasonable decision for him come to a reasonable decision for him or heror her

Implies the ability to understand and Implies the ability to understand and make own decisionmake own decision

Patient must Patient must

understand informationunderstand information

use the information rationallyuse the information rationally

appreciate the consequences appreciate the consequences

come to a reasonable decision for him come to a reasonable decision for him or heror her

. . . Reassess decision-making capacity. . . Reassess decision-making capacity Any physician can determineAny physician can determine

Capacity varies by decisionCapacity varies by decision

Other cognitive abilities do not need Other cognitive abilities do not need to be intactto be intact

Any physician can determineAny physician can determine

Capacity varies by decisionCapacity varies by decision

Other cognitive abilities do not need Other cognitive abilities do not need to be intactto be intact

When a patient lacks capacity . . .When a patient lacks capacity . . . Proxy decision-makerProxy decision-maker

Sources of informationSources of information

written advance directiveswritten advance directives

patient’s verbal statementspatient’s verbal statements

patient’s general values and beliefspatient’s general values and beliefs

how patient lived his / her lifehow patient lived his / her life

best interest determinationsbest interest determinations

Proxy decision-makerProxy decision-maker

Sources of informationSources of information

written advance directiveswritten advance directives

patient’s verbal statementspatient’s verbal statements

patient’s general values and beliefspatient’s general values and beliefs

how patient lived his / her lifehow patient lived his / her life

best interest determinationsbest interest determinations

. . . When a patient lacks capacity. . . When a patient lacks capacity Why turn to othersWhy turn to others

respects patientrespects patient

builds trustbuilds trust

reduces guilt and decision-regretreduces guilt and decision-regret

Why turn to othersWhy turn to others

respects patientrespects patient

builds trustbuilds trust

reduces guilt and decision-regretreduces guilt and decision-regret

EEPPEECC

EEPPEECC Goals of CareGoals of Care

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