Difficult Decisions at the End-of-Life -

talking with patients and families

James Hallenbeck, MDJames Hallenbeck, MD

Medical Director,Medical Director,

VA Hospice Care CenterVA Hospice Care Center

Objectives

Be able to identify major difficult decisions at Be able to identify major difficult decisions at arise at the end-of-lifearise at the end-of-life

Understand the importance of skilled Understand the importance of skilled communication in addressing difficult decisionscommunication in addressing difficult decisions

Use the GOOD acronym in facilitating Use the GOOD acronym in facilitating communicationcommunication

Understand the relation between High and Low Understand the relation between High and Low context communication in care of the dyingcontext communication in care of the dying

Background Recent studies have demonstrated that Recent studies have demonstrated that

serious skill deficits in physician serious skill deficits in physician communicationcommunication

Stanford Study-Stanford Study- Both Stanford caregivers and patient Both Stanford caregivers and patient

families recognized that improvements in families recognized that improvements in communication are neededcommunication are needed

What were What were youyou taught about EOL care or taught about EOL care or communication?communication?

Communication Barriers

Communication is natural- it just happensCommunication is natural- it just happens LanguageLanguage TimeTime Cultural BarriersCultural Barriers

Taboo subjectTaboo subject High Context Issues in a Low Context High Context Issues in a Low Context

Medical WorldMedical World

Difficult Decisions

Resuscitation statusResuscitation status Overall goals of careOverall goals of care

Life-prolonging-comfort careLife-prolonging-comfort care Specific treatmentsSpecific treatments

ChemotherapyChemotherapy AntibioticsAntibiotics Tube feedingTube feeding

Where to liveWhere to live Home, Nursing HomeHome, Nursing Home

Care options- HospiceCare options- Hospice

MORE THAN JUST FULL CODE OR DNR

What makes these difficult decisions?

It’s Good to Discuss Patient Preferences

GGoalsoals

OOptionsptions

OOpinionpinion

DDocumentocument

Goals

Identify stakeholders and their goalsIdentify stakeholders and their goals Future goals based on current understandingFuture goals based on current understanding

““What is your understanding of”What is your understanding of” ““What did your doctor tell you”What did your doctor tell you”

Identify ‘big picture’ goals firstIdentify ‘big picture’ goals first ““Let’s look at the big picture, what is Let’s look at the big picture, what is

most important to you?”most important to you?”

Options

Identify relevant options and prioritiesIdentify relevant options and priorities Address benefits and burdens of optionsAddress benefits and burdens of options

Do your homeworkDo your homework Address probability of successAddress probability of success Link options to identified goalsLink options to identified goals

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

Opinion

In offering your opinion…In offering your opinion… Present data using neutral language:Present data using neutral language:

Crush the chestCrush the chestMassage the heartMassage the heartPress on the chestPress on the chest

Be clear what is data and what opinionBe clear what is data and what opinion Incorporate goals, benefits/burdens and values Incorporate goals, benefits/burdens and values

into your opinioninto your opinion Listen to other’s opinionsListen to other’s opinions

Document

Who said whatWho said what ““Patient said he didn’t want tube feeding”Patient said he didn’t want tube feeding”

What you did/will do with this informationWhat you did/will do with this information ““Will cancel PEG tube insertion”Will cancel PEG tube insertion”

Your assessmentYour assessment ““This reasonable given …”This reasonable given …”

Current and Advance Directive

‘‘Whopper no veggie’ – most common Whopper no veggie’ – most common preferencepreference Would like Would like attemptattempt at resuscitation, but if at resuscitation, but if

it appears reasonable recovery unlikely, it appears reasonable recovery unlikely, would like transition to comfort carewould like transition to comfort care

DocumentDocument: current wishes, note who was : current wishes, note who was involved in discussion, broad goals and involved in discussion, broad goals and specific, relevant issues and decisions specific, relevant issues and decisions

Communication- more than the words

Words:Words: I want you to do everythingI want you to do everything What did you give my father to knock him out?What did you give my father to knock him out? Isn’t there some new experimental therapy Isn’t there some new experimental therapy

available?available? Will you take care of me when the time comes?Will you take care of me when the time comes? I want you to start an IV on my mother and I I want you to start an IV on my mother and I

want it NOW!want it NOW! Your killing my sister!Your killing my sister!

What do you hear?What do you hear?

Communication Hints Clarify ambiguous languageClarify ambiguous language What is the ‘subtext’?What is the ‘subtext’? Identify cognitive and affective aspects of Identify cognitive and affective aspects of

communicationcommunication Cognitive: the medical facts, data, meaningCognitive: the medical facts, data, meaning Affective: underlying emotions, hopes, fears…Affective: underlying emotions, hopes, fears…

Address both cognitive and affective aspects, as Address both cognitive and affective aspects, as appropriateappropriate

Look for ‘empathetic opportunities’Look for ‘empathetic opportunities’ Listen more than you speakListen more than you speak

High and Low ContextCommunication

Low Context CommunicationLow Context Communication Communication embedded in verbal language Communication embedded in verbal language

and written symbols and written symbols Crosses cultures easilyCrosses cultures easily

Example: science, computer codeExample: science, computer code High Context CommunicationHigh Context Communication

Non-verbal, situational, relationalNon-verbal, situational, relational• Examples: sex, death/dyingExamples: sex, death/dying

Dying A High Context Event

In a Low- Context World Low-Context Medical/Scientific World Favors:Low-Context Medical/Scientific World Favors:

Direct verbal discussionDirect verbal discussion Efficiency (fast)Efficiency (fast) Focus on issues/logic, not peopleFocus on issues/logic, not people

High Context Dying:High Context Dying: Communication nonverbal, situationalCommunication nonverbal, situational Relationships important:Relationships important:

Who is trusted, Roles between peopleWho is trusted, Roles between people

Implications Clinicians out of synch with patient/familyClinicians out of synch with patient/family Mutual frustration:Mutual frustration:

Excessive frankness often offensive to Excessive frankness often offensive to patients/familiespatients/families

Providers frustrated with inability to ‘get Providers frustrated with inability to ‘get down to business’down to business’

Getting Into Synch… Skills for translating high context into low context Skills for translating high context into low context

communicationcommunication GOOD AcronymGOOD Acronym Explanatory ModelsExplanatory Models

What, Why, WhoWhat, Why, Who Skills for teaching low-context providers how to Skills for teaching low-context providers how to

relate in high context situationsrelate in high context situations Slow down, establish trust, build relationshipSlow down, establish trust, build relationship

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

SUMMARY Good communication is Good communication is everybody’s everybody’s businessbusiness Difficult decisions at the EOL require special Difficult decisions at the EOL require special

skills, simply because the decisions skills, simply because the decisions areare difficultdifficult

Skill acquisition require Skill acquisition require practicepractice Good communication requires:Good communication requires:

Being in synchBeing in synch Attention to thoughts Attention to thoughts and and feelingsfeelings Self-reflection Self-reflection