Strategies for Strategies for Optimizing Family and Optimizing Family and Team Communication :Team Communication :

Lessons from Working in Lessons from Working in Palliative CarePalliative Care

Susan Blacker, MSW, RSWSusan Blacker, MSW, RSW

Workshop OverviewWorkshop Overview

Guiding principles when working with familiesGuiding principles when working with familiesConsidering our own values and beliefsConsidering our own values and beliefs

Special considerationsSpecial considerations–– Health LiteracyHealth Literacy–– Interpersonal CommunicationInterpersonal Communication–– Differences in meaning and reasoningDifferences in meaning and reasoning

More than meets the eye…More than meets the eye…

Many factors are influencing the patient Many factors are influencing the patient and family experienceand family experience

Factors Influencing How a Family Factors Influencing How a Family Copes with Advanced IllnessCopes with Advanced Illness

Past and Current Medical SituationPast and Current Medical SituationFamily’s Structure and RolesFamily’s Structure and RolesStage in the Life CycleStage in the Life CycleSpirituality/Faith Spirituality/Faith Cultural Values & BeliefsCultural Values & BeliefsPatterns of CommunicationPatterns of CommunicationSocioeconomic Factors/ResourcesSocioeconomic Factors/ResourcesPast Experience with Illness, Disability & DeathPast Experience with Illness, Disability & DeathCoping History, StrengthsCoping History, Strengths

Looking at the Patient and Family as the Looking at the Patient and Family as the UNIT OF CARE is KEY!UNIT OF CARE is KEY!

And a guiding principle in Palliative CareAnd a guiding principle in Palliative Care

See Canadian Hospice Palliative Care AssociationSee Canadian Hospice Palliative Care AssociationNorms of PracticeNorms of Practicewww.chpca.netwww.chpca.net

What Do Families Want?What Do Families Want?Understandable, timely informationUnderstandable, timely informationBetter preparation and training for the Better preparation and training for the technical and emotional aspects of their roletechnical and emotional aspects of their roleCompassion and recognition of their anxiety Compassion and recognition of their anxiety and suffering and hard workand suffering and hard workGuidance in defining their roles and Guidance in defining their roles and responsibilities in patient care and decisionresponsibilities in patient care and decision--makingmakingSupport for setting fair limits on their Support for setting fair limits on their sacrificessacrifices

Levine, C. (1998) Rough crossings: family caregivers’ odysseys tLevine, C. (1998) Rough crossings: family caregivers’ odysseys through the health care system. New York: United hrough the health care system. New York: United Hospital Fund.Hospital Fund.

Levine, C & Zuckerman, C. (1999). The Trouble with Families: TowLevine, C & Zuckerman, C. (1999). The Trouble with Families: Toward an Ethic of Accommodation. ard an Ethic of Accommodation. Ann Internal MedAnn Internal Med. . 130:148130:148--152.152.

INFORMATION NEEDSINFORMATION NEEDS

What Do Families Need to Be What Do Families Need to Be Prepared For?Prepared For?

Knowledge & CommunicationKnowledge & Communication

-- What to do for pain and other symptoms…What to do for pain and other symptoms…-- How to make decisions…How to make decisions…-- Who to call…Who to call…-- What to expect in the last weeks, days and What to expect in the last weeks, days and

hours of life...hours of life...-- What to do after death…What to do after death…

Institute of MedicineInstitute of Medicine (1997) (1997) Approaching Death: Improving care at the end of lifeApproaching Death: Improving care at the end of life. National Academy Press: . National Academy Press: Washington, Washington, D.C..CommitteeD.C..Committee on Care at the End of Lifeon Care at the End of Life

Physical Environment and Personal Physical Environment and Personal CareCare

-- What to provide for immediate comfort and What to provide for immediate comfort and control... control...

-- How to manage personal care…How to manage personal care…-- How to permit privacy or companionship How to permit privacy or companionship

when wanted...when wanted...-- How to provide physical access and safety…How to provide physical access and safety…

Family and Others Close to the Family and Others Close to the PatientPatient

-- What to do for primary companion and What to do for primary companion and caregiver…caregiver…

-- What to do for dependent children or other What to do for dependent children or other dependents...dependents...

-- Who to be onWho to be on--call in emergencies...call in emergencies...

Financial and other Practical IssuesFinancial and other Practical Issues

-- How to handle shortHow to handle short--term finances... term finances... -- What to do about longerWhat to do about longer--term finances…term finances…-- How to manage household…How to manage household…-- How to make funeral arrangements...How to make funeral arrangements...

Resources to explore:Resources to explore:

Canadian Virtual HospiceCanadian Virtual Hospicewww.virtualhospice.cawww.virtualhospice.ca

Speak Up! Advance care planningSpeak Up! Advance care planningwww.advancecareplanning.cawww.advancecareplanning.ca

The majority of patient/family The majority of patient/family complaints relate to their experience complaints relate to their experience of poor communication and lack of of poor communication and lack of information given.information given.

Danger of Interpreting Danger of Interpreting BehavioursBehaviours

We assume we We assume we knowknow the meaning behind the meaning behind them.them.

Culturally complexCulturally complex

Risk of less communication, not moreRisk of less communication, not more

Family Family -- Health Care Provider Health Care Provider Relationship: A TwoRelationship: A Two--Way StreetWay Street

Family Health CareTeam

Special ConsiderationsSpecial Considerations

1) Health Literacy1) Health Literacy

Health literacy means being able toHealth literacy means being able to findfind,,processprocess, and, and understandunderstand basic health basic health information and services needed to make information and services needed to make appropriate health decisions. appropriate health decisions.

Low health literacy is linked to poorer health Low health literacy is linked to poorer health outcomes. outcomes. –– Treatment compliance and selfTreatment compliance and self--management management

challengeschallenges–– Preventable hospitalizationsPreventable hospitalizations–– Perceived health statusPerceived health status

The Concept of Health LiteracyThe Concept of Health Literacy

Older adultsOlder adults are one of the populations are one of the populations most likely to experience low health most likely to experience low health literacy, as are literacy, as are people with compromised people with compromised health statushealth status. .

Health literacy affects people's ability to:Health literacy affects people's ability to:

Navigate the healthcare systemNavigate the healthcare system–– locating providers and services; understanding locating providers and services; understanding

sequence of events (sequence of events (egeg. need for timely diagnostic . need for timely diagnostic tests)tests)

Share personal informationShare personal information–– health history, symptom reporting health history, symptom reporting

(“How are you doing?”)(“How are you doing?”)Engage in selfEngage in self--care care Understand concepts (Understand concepts (ieie. probability and risk) . probability and risk) that might be associated with treatment that might be associated with treatment decision makingdecision making

Tools You Can Use…Tools You Can Use…

Learn more about Health LiteracyLearn more about Health Literacy

Improving Health LiteracyImproving Health LiteracyResources and ToolkitResources and Toolkithttp://http://www.health.govwww.health.gov/communication/literacy/#overview/communication/literacy/#overview

U.S. Department of Health and Human Service U.S. Department of Health and Human Service ––

Quick Guide to Health LiteracyQuick Guide to Health Literacyhttp://http://www.health.gov/communication/literacy/quickguidewww.health.gov/communication/literacy/quickguide//

Special ConsiderationsSpecial Considerations

2) Interpersonal Interaction 2) Interpersonal Interaction ––COMMUNICATION COMMUNICATION

““Health care is an intensely Health care is an intensely interpersonal phenomenon.”interpersonal phenomenon.”

Thorne, S. E. & Robinson, C. A. (1988). Health care relationshipThorne, S. E. & Robinson, C. A. (1988). Health care relationships: The chronic illness perspective. s: The chronic illness perspective. Research in Nursing & HealthResearch in Nursing & Health. 11, 293. 11, 293--300.300.

20 Communication Tips20 Communication Tips From: “Improving Communication with Older Patients: Tips from thFrom: “Improving Communication with Older Patients: Tips from the Literature”e Literature”

Robinson, White and Robinson, White and HouchinsHouchins. . Family Practice ManagementFamily Practice Management, Sept. 2006, Sept. 2006

1.1. Allow extra time for older persons.Allow extra time for older persons.2.2. Minimize visual and auditory distractions.Minimize visual and auditory distractions.3.3. Sit faceSit face--toto--face with the patient.face with the patient.4.4. Don’t underestimate the power of eye Don’t underestimate the power of eye

contact.contact.5.5. Listen without interrupting the person.Listen without interrupting the person.

6. Speak slowly, clearly and loudly.6. Speak slowly, clearly and loudly.7. Use short simple words and sentences.7. Use short simple words and sentences.8. Stick to one topic at a time.8. Stick to one topic at a time.9. Simply and write down your instructions.9. Simply and write down your instructions.10. Use charts, models and pictures to 10. Use charts, models and pictures to

illustrate your message.illustrate your message.

11. Frequently summarize the most 11. Frequently summarize the most important points.important points.

12. Give the patient a chance to ask 12. Give the patient a chance to ask questions.questions.

13. Schedule older patients earlier in the day.13. Schedule older patients earlier in the day.14. Greet them as their arrive at the practice.14. Greet them as their arrive at the practice.15. Seat them in a quiet, comfortable area.15. Seat them in a quiet, comfortable area.

16. Make signs, forms and brochures easy to read.16. Make signs, forms and brochures easy to read.17. Be prepared to escort elderly patients from 17. Be prepared to escort elderly patients from

room to room.room to room.18. Check on them if they’ve been waiting in the 18. Check on them if they’ve been waiting in the

exam room.exam room.19. Use touch to keep the patient relaxed and 19. Use touch to keep the patient relaxed and

focused.focused.20. Say goodbye, to end the visit on a positive 20. Say goodbye, to end the visit on a positive

note.note.

But there is more….But there is more….

People in interactions negotiate the People in interactions negotiate the definition of their relationship through definition of their relationship through verbal and nonverbal and non--verbal cues.verbal cues.

You are saying You are saying so much moreso much more than what than what you are saying…you are saying…Sometimes our body language does not fit our verbal messages Sometimes our body language does not fit our verbal messages creating a cognitive dissonance in the listener. creating a cognitive dissonance in the listener.

““Interpersonal Circle”Interpersonal Circle”

The interpersonal circle is a model for The interpersonal circle is a model for conceptualizing, organizing, and conceptualizing, organizing, and assessing interpersonal assessing interpersonal behaviourbehaviour, , traits, and motives traits, and motives

(Wiggins, 2003; (Wiggins, 2003; KeislerKeisler, 1983; , 1983; GurtmanGurtman, 1997), 1997)

What if the reaction doesn’t What if the reaction doesn’t seem to fit?seem to fit?

Is the person reacting to something Is the person reacting to something else? else? –– Past experience with illness or deathPast experience with illness or death–– Past experience with conflictPast experience with conflict–– Coping Coping –– grief, anxiety, feargrief, anxiety, fear–– Some other motivationSome other motivation

Communication StylesCommunication Styles

OPEN OPEN vsvs RESERVEDRESERVED

DIRECT DIRECT vsvs INDIRECTINDIRECT

Our Personal Style…Our Personal Style…

How we communicate is a result of How we communicate is a result of many variables…many variables…–– Personality, Gender, CulturePersonality, Gender, Culture–– Situation/EnvironmentSituation/Environment

Beliefs about the health care system (patientBeliefs about the health care system (patient--provider roles)provider roles)

GEORGE BERNARD SHAWGEORGE BERNARD SHAW::

The problem with communication ... is The problem with communication ... is the the illusionillusion that it has been accomplished.that it has been accomplished.

RACHEL NAOMI REMENRACHEL NAOMI REMEN, MD:, MD:The most basic and powerful way to The most basic and powerful way to connect to another person is to listen. connect to another person is to listen. Just listen. Perhaps the most important Just listen. Perhaps the most important thing we ever give each other is our thing we ever give each other is our attention…. A loving silence often has attention…. A loving silence often has far more power to heal and to connect far more power to heal and to connect than the most wellthan the most well--intentioned words.intentioned words.

Special ConsiderationsSpecial Considerations

3) Differences in Meaning and Reasoning3) Differences in Meaning and Reasoning

How do we come to conclusions about what How do we come to conclusions about what we think is “true” or “fact” in a situation?we think is “true” or “fact” in a situation?

MeaningMeaning

As human beings, we must assign As human beings, we must assign meaning to our experiences.meaning to our experiences.

That is how we determine our response That is how we determine our response –– coping, adaptation, etc.coping, adaptation, etc.

““Ladder of Inference” Ladder of Inference” (from Peter (from Peter SengeSenge--The Fifth Discipline)The Fifth Discipline)

The ladder of inference is a model that The ladder of inference is a model that describes an individual's mental process of describes an individual's mental process of observing situations, drawing conclusions and observing situations, drawing conclusions and taking action. taking action.

When we say When we say "the fact is …""the fact is …"what we are actually saying is: what we are actually saying is: “ the fact, as I “ the fact, as I understand it based upon my data selection understand it based upon my data selection process, cultural and personal background, process, cultural and personal background, judgments, beliefs and assumptions is ..."judgments, beliefs and assumptions is ..."

This is important as there are a lot of This is important as there are a lot of steps in between the data and the actions steps in between the data and the actions we take based upon that data. we take based upon that data.

The Importance of Family The Importance of Family Meetings:Meetings:

AN AN INTERVENTIONINTERVENTIONFamily conferences can be useful to:Family conferences can be useful to:

provide medical information & adviceprovide medical information & adviceshare informationshare informationgain an understanding of family dynamicsgain an understanding of family dynamicsidentify and affirm individual relationships and response identify and affirm individual relationships and response to illnessto illnessidentify areas of difficulty in family communicationidentify areas of difficulty in family communicationconnect affectively with familiesconnect affectively with families

cont’dcont’d

Family meetings in palliative care: Family meetings in palliative care: Multidisciplinary clinical practice guidelinesMultidisciplinary clinical practice guidelines

Peter Hudson, Karen Quinn, Brendan O'HanlonPeter Hudson, Karen Quinn, Brendan O'Hanlon and and SanchiaSanchia ArandaArandaBMC Palliative CareBMC Palliative Care 2008, 2008, 77:12:12 doi:10.1186/1472doi:10.1186/1472--684X684X-- 77--1212

The electronic version of this article can be found online The electronic version of this article can be found online at: at: http://www.biomedcentral.com/1472http://www.biomedcentral.com/1472--684X/7/12684X/7/12

Three Phases of Family Three Phases of Family ConferencesConferences

PreparationPreparationConference MeetingConference MeetingFollowFollow--upup

Hansen, P., Cornish, P., & Kayser, K. (1998). Family conferences as forums for decision making in hospital settings. Social Work in Health Care. 27(3), 57-74.

Curtis, J., Patrick, D., Shannon, S., Treece, P., Engelberg, R., & Rubenfeld, G. (2001). The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. Critical Care Medicine. 29 (Suppl. 2). 26-33.

Useful Questions Useful Questions Communication, Family PerspectiveCommunication, Family Perspective

Tell me the story of ____ (patient) illness… Tell me the story of ____ (patient) illness… How was he/she diagnosed? What happened How was he/she diagnosed? What happened next?next?How did each of you learn about the news of How did each of you learn about the news of the diagnosis? How did each of you respond?the diagnosis? How did each of you respond?Is there anyone important to _______ Is there anyone important to _______ (patient) who does not know?(patient) who does not know?What was ______ (patient) like before he/she What was ______ (patient) like before he/she got sick?got sick?

King, D and Quill, T. Working with Families in Palliative Care:

One Size Does Not Fit All, Journal of Palliative Medicine 9:3, 704-715, 2006

Identify family roles and Identify family roles and attachments/bondsattachments/bondsDoes your family have a main caregiver? Does your family have a main caregiver? DecisionDecision--maker? Communicator?maker? Communicator?What has your relationship been like with What has your relationship been like with ______ (patient)? ______ (patient)? Has that changed since they got sick?Has that changed since they got sick?

King, D and Quill, T. Working with Families in Palliative Care:

One Size Does Not Fit All, Journal of Palliative Medicine 9:3, 704-715, 2006

DecisionDecision--making/Problemmaking/Problem--solvingsolving“What would the patient want under these “What would the patient want under these circumstances?”circumstances?”

Seeking common ground Seeking common ground ––How do big decisions typically get made in this How do big decisions typically get made in this family?family?We all want what is best for _____ (patient) but We all want what is best for _____ (patient) but it is natural that there may be some it is natural that there may be some disagreements about what that might be. Let disagreements about what that might be. Let me make sure that I have heard everyone’s me make sure that I have heard everyone’s point of view.point of view.What things to you all agree should be done? What things to you all agree should be done? What are the things that you don’t agree on?What are the things that you don’t agree on?King, D and Quill, T. Working with Families in Palliative Care:

One Size Does Not Fit All, Journal of Palliative Medicine 9:3, 704-715, 2006

Questions and DiscussionQuestions and Discussion