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

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

• Module 7

Goals of Care
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Objectives . . .

• Understand the different goals and how they
  interrelate and change
• Understand how to use the 7-step protocol to
  negotiate goals of care
• Be able to communicate prognosis and its
  uncertainty
• Understand how to tell the truth and identify
  reasonable hope

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. . . Objectives

• Be able to use language effectively
• Be able to set limits on unreasonable goals
• Be able to adjust care and communication
  according to culture
• Understand how to identify goals when patients
  lack capacity

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Introduction . . .

• Every one has a personal sense of
• who we are
• what we like to do
• control we like to have
• goals for our lives
• things we hope for

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. . . Introduction

• Hope, goals, expectations change with illness
• Physicians role to clarify goals, treatment plan

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Potential goals of care

• Cure of disease
• Avoidance of premature death
• Maintenance or improvement in function
• Prolongation of life

• Relief of suffering
• Quality of life
• Staying in control
• A good death
• Support for families and loved ones

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Historically, a dichotomous division of goals of
care

• Focus on curing illness
• Little attention to relief of suffering, care of
  dying
• Hospice / palliative care arose in response to a
  need

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Figure 1 A dichotomous intent
Curative / life-prolonging therapy
Presentation
Death
Relieve suffering (hospice)
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Multiple goals of care

• Multiple goals often apply simultaneously
• Goals are often contradictory
• Certain goals may take priority over others

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Goals may change

• Some take precedence over others
• The shift in focus of care
• is gradual
• is an expected part of the continuum of medical
  care

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Figure 2 The interrelationship of therapies with
curative and palliative intent
Curative / life-prolonging therapy
Presentation
Death
Relieve suffering (palliative care)
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Palliative care expanding the options . . .

• Interdisciplinary care
• Symptom control
• Supportive care

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. . . Palliative care expanding the options

• Any life-threatening diagnosis
• Anytime during illness
• Whenever patient / family prepared to accept it
• May be combined with curative therapies
• May be focus of care

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

• 1. Create the right setting
• 2. Determine what the patient and family know
• 3. Explore what they are expecting or hoping for

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

• 4. Suggest realistic goals
• 5. Respond empathically
• 6. Make a plan and follow-through
• 7. Review and revise periodically, as appropriate

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Communicating prognosis

• Markedly over-estimate prognosis
• Helps patient / family cope, plan
• increase access to hospice, other services
• Offer a range or average for life expectancy

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Truth-telling and maintaining hope

• False hope may deflect from other important
  issues
• True clinical skill to help find hope for
  realistic goals

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Language with unintended consequences

• Do you want us to do everything possible?
• Will you agree to discontinue care?
• Its time we talk about pulling back
• I think we should stop aggressive therapy
• Im going to make it so he wont suffer

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Language to describethe goals of care . . .

• I want to give the best care possible until the
  day you die
• We will concentrate on improving the quality of
  your childs life
• We want to help you live meaningfully in the time
  that you have

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Language to describethe goals of care . . .

• Ill do everything I can to help you maintain
  your independence
• I want to ensure that your father receives the
  kind of treatment he wants
• Your childs comfort and dignity will be my top
  priority

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. . . Language to describethe goals of care

• I will focus my efforts on treating your symptoms
• Lets discuss what we can do to fulfill your wish
  to stay at home
• Lets discuss what we can do to have your child
  die at home

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Cultural differences

• Who gets the information?
• How to talk about information?
• Who makes decisions?
• Ask the patient
• Consider a family meeting

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Determine specific priorities

• Based on values, preferences, clinical
  circumstances
• Influenced by information from physician, team
  members

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Reviewing goals,treatment priorities

• Goals guide care
• Assess priorities to develop initial plan of care
• Review with any change in
• health status
• advancing illness
• setting of care
• treatment preferences

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When the physician cannot support a patients
choices

• Typically occurs when goals are unreasonable,
  illegal
• Set limits without implying abandonment
• Make the conflict explicit
• Try to find an alternate solution

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Reassess decision-making capacity . . .

• Implies the ability to understand and make own
  decision
• Patient must
• understand information
• use the information rationally
• appreciate the consequences
• come to a reasonable decision for him or her

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. . . Reassess decision-making capacity

• Any physician can determine
• Capacity varies by decision
• Other cognitive abilities do not need to be intact

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When a patient lacks capacity . . .

• Proxy decision-maker
• Sources of information
• written advance directives
• patients verbal statements
• patients general values and beliefs
• how patient lived his / her life
• best interest determinations

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. . . When a patient lacks capacity

• Why turn to others
• respects patient
• builds trust
• reduces guilt and decision-regret

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• Goals of Care
• Summary