Difficult Decisions at the End-of-Life - talking with patients and families

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Difficult Decisions at the End-of-Life -talking
with patients and families

• James Hallenbeck, MD
• Medical Director,
• VA Hospice Care Center

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Objectives

• Be able to identify major difficult decisions at
  arise at the end-of-life
• Understand the importance of skilled
  communication in addressing difficult decisions
• Use the GOOD acronym in facilitating
  communication
• Understand the relation between High and Low
  context communication in care of the dying

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Background

• Recent studies have demonstrated that serious
  skill deficits in physician communication
• Stanford Study-
• Both Stanford caregivers and patient families
  recognized that improvements in communication are
  needed
• What were you taught about EOL care or
  communication?

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Communication Barriers

• Communication is natural- it just happens
• Language
• Time
• Cultural Barriers
• Taboo subject
• High Context Issues in a Low Context Medical World

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Difficult Decisions
MORE THAN JUST FULL CODE OR DNR

• Resuscitation status
• Overall goals of care
• Life-prolonging-comfort care
• Specific treatments
• Chemotherapy
• Antibiotics
• Tube feeding
• Where to live
• Home, Nursing Home
• Care options- Hospice

What makes these difficult decisions?
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Its Good to Discuss Patient Preferences

• Goals
• Options
• Opinion
• Document

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Goals

• Identify stakeholders and their goals
• Future goals based on current understanding
• What is your understanding of
• What did your doctor tell you
• Identify big picture goals first
• Lets look at the big picture, what is most
  important to you?

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Options

• Identify relevant options and priorities
• Address benefits and burdens of options
• Do your homework
• Address probability of success
• Link options to identified goals

Pearl Too often clinicians get bogged down in
discussions over specific options without
understanding how options relate to overall goals.
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Opinion

• In offering your opinion
• Present data using neutral language
• Crush the chest
• Massage the heart
• Press on the chest
• Be clear what is data and what opinion
• Incorporate goals, benefits/burdens and values
  into your opinion
• Listen to others opinions

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Document

• Who said what
• Patient said he didnt want tube feeding
• What you did/will do with this information
• Will cancel PEG tube insertion
• Your assessment
• This reasonable given

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Current and Advance Directive

• Whopper no veggie most common preference
• Would like attempt at resuscitation, but if it
  appears reasonable recovery unlikely, would like
  transition to comfort care
• Document current wishes, note who was involved
  in discussion, broad goals and specific, relevant
  issues and decisions

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Communication- more than the words

• Words
• I want you to do everything
• What did you give my father to knock him out?
• Isnt there some new experimental therapy
  available?
• Will you take care of me when the time comes?
• I want you to start an IV on my mother and I want
  it NOW!
• Your killing my sister!

What do you hear?
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Communication Hints

• Clarify ambiguous language
• What is the subtext?
• Identify cognitive and affective aspects of
  communication
• Cognitive the medical facts, data, meaning
• Affective underlying emotions, hopes, fears
• Address both cognitive and affective aspects, as
  appropriate
• Look for empathetic opportunities
• Listen more than you speak

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High and Low ContextCommunication

• Low Context Communication
• Communication embedded in verbal language and
  written symbols
• Crosses cultures easily
• Example science, computer code
• High Context Communication
• Non-verbal, situational, relational
• Examples sex, death/dying

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Dying A High Context EventIn a Low- Context
World

• Low-Context Medical/Scientific World Favors
• Direct verbal discussion
• Efficiency (fast)
• Focus on issues/logic, not people
• High Context Dying
• Communication nonverbal, situational
• Relationships important
• Who is trusted, Roles between people

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Implications

• Clinicians out of synch with patient/family
• Mutual frustration
• Excessive frankness often offensive to
  patients/families
• Providers frustrated with inability to get down
  to business

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Getting Into Synch

• Skills for translating high context into low
  context communication
• GOOD Acronym
• Explanatory Models
• What, Why, Who
• Skills for teaching low-context providers how to
  relate in high context situations
• Slow down, establish trust, build relationship

In high context situations the shortest distance
between two points is a curve
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SUMMARY

• Good communication is everybodys business
• Difficult decisions at the EOL require special
  skills, simply because the decisions are
  difficult
• Skill acquisition require practice
• Good communication requires
• Being in synch
• Attention to thoughts and feelings
• Self-reflection