Difficult Decisions at the End-of-Life - talking with patients and families James Hallenbeck, MD Medical Director, VA Hospice Care Center

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

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

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

Difficult Decisions Resuscitation status Resuscitation status Overall goals of care Overall goals of care  Life-prolonging-comfort care Specific treatments Specific treatments  Chemotherapy  Antibiotics  Tube feeding Where to live Where to live  Home, Nursing Home Care options- Hospice Care options- Hospice MORE THAN JUST FULL CODE OR DNR What makes these difficult decisions?

It’s Good to Discuss Patient Preferences Goals Goals Options Options Opinion Opinion Document Document

Goals Identify stakeholders and their goals Identify stakeholders and their goals Future goals based on current understanding Future goals based on current understanding  “What is your understanding of”  “What did your doctor tell you” Identify ‘big picture’ goals first Identify ‘big picture’ goals first  “Let’s look at the big picture, what is most important to you?”

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

Opinion In offering your 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 Be clear what is data and what opinion Incorporate goals, benefits/burdens and values into your opinion Incorporate goals, benefits/burdens and values into your opinion Listen to other’s opinions Listen to other’s opinions

Document Who said what Who said what  “Patient said he didn’t want tube feeding” What you did/will do with this information What you did/will do with this information  “Will cancel PEG tube insertion” Your assessment Your assessment  “This reasonable given …”

Current and Advance Directive ‘Whopper no veggie’ – most common preference ‘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 Document: current wishes, note who was involved in discussion, broad goals and specific, relevant issues and decisions

Communication- more than the words Words: Words:  I want you to do everything  What did you give my father to knock him out?  Isn’t 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?

Communication Hints Clarify ambiguous language Clarify ambiguous language What is the ‘subtext’? What is the ‘subtext’? Identify cognitive and affective aspects of communication 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 Address both cognitive and affective aspects, as appropriate Look for ‘empathetic opportunities’ Look for ‘empathetic opportunities’ Listen more than you speak Listen more than you speak

High and Low Context Communication Low Context Communication 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/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 discussion  Efficiency (fast)  Focus on issues/logic, not people High Context Dying: High Context Dying:  Communication nonverbal, situational  Relationships important:  Who is trusted, Roles between people

Implications Clinicians out of synch with patient/family Clinicians out of synch with patient/family Mutual frustration: Mutual frustration:  Excessive frankness often offensive to patients/families  Providers frustrated with inability to ‘get down to business’

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

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