Helping patients and Helping patients and Families with End-of-Life Families with End-of-Life

DecisionsDecisions

A Competency for A Competency for Hospice Social WorkersHospice Social Workers

Gail Henson, Ph.D.Gail Henson, Ph.D.Hospice Institute, Bellarmine UniversityHospice Institute, Bellarmine University

Why have such a workshop about Why have such a workshop about facilitating end-of-life discussions?facilitating end-of-life discussions? You as the Hospice Social Worker have significant You as the Hospice Social Worker have significant

training in family systems and in psychosocial training in family systems and in psychosocial strategies that are especially valuable.strategies that are especially valuable.

Patient autonomy is paramount and you understand Patient autonomy is paramount and you understand that.that.

Advances in medicine & technology make decisions Advances in medicine & technology make decisions increasingly complex.increasingly complex.

Conflicting values between patient and family or Conflicting values between patient and family or among family membersamong family members

Limits in family knowledge about or comprehension of Limits in family knowledge about or comprehension of treatment options, prognosistreatment options, prognosis

Limits in family resourcesLimits in family resources Accommodation of cultural perspectives on end-of-lifeAccommodation of cultural perspectives on end-of-life Knowledge, skills and attitudes can always grow in Knowledge, skills and attitudes can always grow in

order to deal with….order to deal with….

As social workers you….As social workers you….

Manage a LOT!Manage a LOT!

Let’s see what that looks like!Let’s see what that looks like!

Interactive exercise 1Interactive exercise 1See

HandoutIntroduction

Objectives for workshopObjectives for workshop 1. Identify common end-of-life decisions Hospice 1. Identify common end-of-life decisions Hospice

social workers help patients and families makesocial workers help patients and families make 2. Identify 2. Identify NHPCO Core Clinical Skills for NHPCO Core Clinical Skills for

Hospice/Palliative Care Social WorkersHospice/Palliative Care Social Workers and and National Association of Social Workers Standards National Association of Social Workers Standards of Social Work Practice in Palliative and End of of Social Work Practice in Palliative and End of Life CareLife Care relevant to your experience at Hospice. relevant to your experience at Hospice.

3. Identify knowledge, skills, and attitudes 3. Identify knowledge, skills, and attitudes valuable to develop as Hospice social workers in valuable to develop as Hospice social workers in helping patients and families make end-of-life helping patients and families make end-of-life decisions.decisions.

ObjectivesObjectives 4. Identify individual challenges or barriers you 4. Identify individual challenges or barriers you

encounter as a Hospice social worker discussing encounter as a Hospice social worker discussing end-of-life decisions with patients and families. end-of-life decisions with patients and families.

5. Evaluate case studies about Hospice social 5. Evaluate case studies about Hospice social workers helping patients and families make end-workers helping patients and families make end-of-life decisions.of-life decisions.

6. Design a plan and strategies for developing 6. Design a plan and strategies for developing knowledge, skills, attitudes, values to make knowledge, skills, attitudes, values to make discussions related to end of life decision-making discussions related to end of life decision-making more effective for patients and families.more effective for patients and families.

7. Demonstrate skill in facilitating end-of-life 7. Demonstrate skill in facilitating end-of-life discussions between patients and families.discussions between patients and families.

So what do you need to talk with families So what do you need to talk with families more effectively about EOL Decisions?more effectively about EOL Decisions?

Knowledge?Knowledge?

Skills?Skills?

Dispositions?Dispositions?

Objective 1Objective 1

Identify common end-of-life Identify common end-of-life decisions Hospice social workers decisions Hospice social workers help patients and families make.help patients and families make.

Has the nature of decisions or the Has the nature of decisions or the manner of decision-making manner of decision-making changed with Open Access or the changed with Open Access or the Experience Model?Experience Model?

SeeHandout

Objective 1

Objective 2 Professional StandardsObjective 2 Professional Standards

NASW Standards of Social Work NASW Standards of Social Work practice in Palliative and End of Life practice in Palliative and End of Life CareCare

NHPCO Core Clinical Skills for NHPCO Core Clinical Skills for Hospice/Palliative Care Social WorkersHospice/Palliative Care Social Workers

JCAHO Standards related to Social Work JCAHO Standards related to Social Work Practice and competencyPractice and competency

SeeHandout

Objective 2

NHPCO Core Clinical Skills for NHPCO Core Clinical Skills for Hospice/Palliative Care Social WorkersHospice/Palliative Care Social Workers

1. Assessment process1. Assessment process 2. Co-Case Management/Team work2. Co-Case Management/Team work 3. Interventions/counseling3. Interventions/counseling 4. End-of-life Care Planning *4. End-of-life Care Planning *

NHPCO Standards relate to JCAHO NHPCO Standards relate to JCAHO Standards, an important issue in this Standards, an important issue in this tightly regulated work.tightly regulated work. See

HandoutObjective 2

Assessment Process- Assessment Process- NHPCONHPCO

Psychosocial Psychosocial historyhistory

Mental health Mental health statusstatus

SexualitySexuality

SpiritualitySpiritualityRisk Risk

AssessmentAssessmentCare Plan Care Plan

DevelopmentDevelopmentLong-Term Long-Term

Care PlanningCare PlanningSeeHandout

Objective 2

Co-Case Management/Team WorkCo-Case Management/Team Work NHPCONHPCO

Hospice Program Hospice Program criteriacriteria

ConfidentialityConfidentiality AdvocacyAdvocacy Proactively Proactively

accessing accessing resourcesresources

Insurance Insurance BenefitBenefit

Care planning Care planning with multiple with multiple disciplinesdisciplines

Working closely, Working closely, proactively with proactively with RN/Case RN/Case managermanager

DocumentationDocumentation Infection controlInfection control

SeeHandout

Objective 2

Interventions/counselingInterventions/counseling NHPCONHPCO

Working with Working with DiversityDiversity

Interviewing skillsInterviewing skills Supportive Supportive

counseling with counseling with adults, children, adults, children, adolescentsadolescents

Patient/family Patient/family educationeducation

Life ReviewLife Review Crisis interventionCrisis intervention Suicide Suicide

preventions/preventions/

interventionsinterventions Symbolic messages Symbolic messages

of the dyingof the dying Loss and grief Loss and grief

theorytheory SeeHandout

Objective 2

End-of-Life Care Planning*End-of-Life Care Planning* NHPCONHPCO

Knowledge of Knowledge of DPOA, Living Wills, DPOA, Living Wills, Directives to Directives to PhysiciansPhysicians

Decision-making Decision-making capacity/patient capacity/patient representativesrepresentatives

Provision of Care Provision of Care for Dependentsfor Dependents

Signs and Signs and Symptoms of Symptoms of Impending DeathImpending Death

Rituals and Rituals and PracticesPractices

Funeral PlanningFuneral Planning

This is our emphasisThis is our emphasis

SeeHandout

Objective 2

Objective 2 Objective 2 NASW Standards of Social Work practice in NASW Standards of Social Work practice in

Palliative and End of Life Care—Palliative and End of Life Care— Ethics and valuesEthics and values KnowledgeKnowledge AssessmentAssessment Intervention/Intervention/

treatment planningtreatment planning Attitude/self-Attitude/self-

awarenessawareness Empowerment and Empowerment and

advocacyadvocacy

DocumentationDocumentation Interdisciplinary Interdisciplinary

teamworkteamwork Cultural Cultural

competencecompetence Continuing Continuing

educationeducation Supervision,Supervision, leadership, leadership, trainingtraining

SeeHandout

Objective 2

Exercise for Objective 2Exercise for Objective 2

Using the NHPCO and NASW guidelines, put an asterisk to identify two areas which you demonstrate competence (a, b)

Which are most relevant to your work as a Hospice social worker?

SeeHandout

Objective 2

Objective of workshop 3 Identify knowledge, skills, attitudes, values critical to Hospice social workers in discussing end of life decisions

SeeHandout

Objective 3

Objective 3 What do you need?Objective 3 What do you need?

What knowledge, skills, attitudes do What knowledge, skills, attitudes do you routinely use in discussing EOL you routinely use in discussing EOL issues with patients and their issues with patients and their families?families?

Please journal on your handout.Please journal on your handout. Then discuss with your table.Then discuss with your table.

SeeHandout

Objective 3

Objective 4 What challenges does Objective 4 What challenges does the decision-making process with the decision-making process with

patients and family pose?patients and family pose? Identify frustrations, Identify frustrations,

challenges or challenges or barriers you barriers you encounter as a encounter as a Hospice social Hospice social worker in addressing worker in addressing end-of-life decisions end-of-life decisions with patients and with patients and familiesfamilies

Decision issuesDecision issues Style issuesStyle issues Word choice issuesWord choice issues Decision-making Decision-making

abilityability Conversation Conversation

openersopeners Wrong Wrong

decisions?decisions?

SeeHandout

Objective 4

The mere thought of deathThe mere thought of death

Makes patient and family decision-making tough for all concerned.

Just makes you want to……..sometimes.

Death

In the

Sickroom

Munch

Have you experienced a situation like this?

“The Dead Mother”

Edward Munch

“If I take her off the feeding tube, she’ll starve to death.”

a.a.Issue-related challengesIssue-related challenges. In what situations . In what situations have you experienced frustration when patients have you experienced frustration when patients

don’t make a decision—or do not communicate a don’t make a decision—or do not communicate a decision they may have made privately?decision they may have made privately?

Some of the decisions Some of the decisions social workers express social workers express the need for patients the need for patients to decide includeto decide include

*guardianship for *guardianship for childrenchildren

*who will be *who will be healthcare surrogateshealthcare surrogates

*advance directives*advance directives

*writing a will*writing a will *not making an active *not making an active

decision about decision about treatmenttreatment

What else would you What else would you add?add?

Decision-makingDecision-making Do you have any other comments about the Do you have any other comments about the

frustration expressed by one Hospice social frustration expressed by one Hospice social worker with patients who won’t make decisions? worker with patients who won’t make decisions? “Not to decide is to decide,” said the social “Not to decide is to decide,” said the social worker.worker.

Can you identify any decision-making situations Can you identify any decision-making situations in which the challenges/barriers/or frustrations in which the challenges/barriers/or frustrations might come from within you? might come from within you?

Can you identify any decision-making situations Can you identify any decision-making situations in which the challenge or barrier might come in which the challenge or barrier might come from the patient, family or another source?from the patient, family or another source?

Patient associated barriers to clear Patient associated barriers to clear end-of-life treatment decisionsend-of-life treatment decisions

Cultural diversity (Chinese Cultural diversity (Chinese American=disrespect to discuss EOL)American=disrespect to discuss EOL)

Lack of familiarity with health care systemLack of familiarity with health care system Educational backgroundEducational background Desire to delegate decisions entirely to Desire to delegate decisions entirely to

family. family. Awareness of hospice servicesAwareness of hospice services Trust in family members Trust in family members Lack of understanding about what CPR, Lack of understanding about what CPR,

IVs, artificial hydration really do.IVs, artificial hydration really do.Haley, “Family issues…” 2002

Challenges in Decision-makingChallenges in Decision-making

Communication style issues. Communication style issues. Sometimes communication styles can Sometimes communication styles can affect the effectiveness of your affect the effectiveness of your interactions with the family and patient interactions with the family and patient when making end-of-life decisions.when making end-of-life decisions.

– What situations might require you to take a What situations might require you to take a more direct style?more direct style?

– What situations or decisions might make you What situations or decisions might make you take a non-directive style?take a non-directive style?

Word choiceWord choice

Challenges in decision-makingChallenges in decision-making Decision making strategies. Decision making strategies. Decision-making about Decision-making about

end-of-life issues often is a chaotic, stress-filled time end-of-life issues often is a chaotic, stress-filled time for all participants. Numerous models of decision-for all participants. Numerous models of decision-making exist, such as the one below. making exist, such as the one below.

1. Decision identification 1. Decision identification 2. Decision analysis 2. Decision analysis 3. Solution criteria 3. Solution criteria 4. Solution suggestions4. Solution suggestions 5. Solution evaluation & selection5. Solution evaluation & selection 6. Solution implementation 6. Solution implementation

Identify one situation in which you have helped a Identify one situation in which you have helped a patient and/or family make a decision about some patient and/or family make a decision about some aspect of the end-of-life. How did the decision aspect of the end-of-life. How did the decision actually actually get made?get made?

Decisions involving medical futilityDecisions involving medical futility

MiscommunicationMiscommunication Conflict: family member or health Conflict: family member or health

care surrogate may have different care surrogate may have different goals, values*goals, values*

Misunderstandings over prognosisMisunderstandings over prognosis Personal factors like guilt, distrustPersonal factors like guilt, distrust The family member/surrogate may The family member/surrogate may

stand to benefit from deathstand to benefit from deathEPEC, Module 10

O.A.S.I.S. ExerciseO.A.S.I.S. Exercise

OpenOpen— — ArticulateArticulate the the

question/problem/issue (does the question/problem/issue (does the person perceive there to be an person perceive there to be an issue/problem/question)issue/problem/question)

Search for solutionsSearch for solutions Integrate options into actionIntegrate options into actionStudy and evaluateStudy and evaluate

So you have to talk—how to get So you have to talk—how to get startedstarted

Allow the patient to Allow the patient to talk about talk about whatever—they whatever—they may give you an may give you an opening…opening…““When I’m no When I’m no longer here, I want longer here, I want you to have this…”you to have this…”

““It seems like every It seems like every friend I have is friend I have is gone…”gone…”

Answer such leading Answer such leading statements with statements with responses that invite responses that invite more conversationmore conversation

““You seem to feel You seem to feel that life is getting that life is getting short…”short…”

““It must be getting It must be getting very lonely for very lonely for you…”you…”

Case studiesCase studies

Please examine the case studies in Please examine the case studies in the materials provided.the materials provided.

What decisions have to be made?What decisions have to be made? Identify the knowledge, skills, and Identify the knowledge, skills, and

attitudes the Hospice social worker attitudes the Hospice social worker must have to deal with them.must have to deal with them.

Demonstrate some possible Demonstrate some possible responses to this case.responses to this case.

SeeHandout

Objectives 5, 7

This addresses Objectives 5 and 7

Now make it personal……Now make it personal……

Objective 6Objective 6 Develop a personal plan Develop a personal plan for developing your knowledge, skills, for developing your knowledge, skills, or attitudes to use when helping or attitudes to use when helping patients and families make end-of-patients and families make end-of-life decisionslife decisions

SeeHandout

Objective 6

Objective 6 Your Personal PlanObjective 6 Your Personal PlanWhat do I What do I need/want?need/want?

Goal/endGoal/end Resources/Resources/

Strategies to Strategies to achieve goalachieve goal

KnowledgeKnowledge

SkillsSkills

AttitudesAttitudesSee

HandoutObjective 7

Role playingRole playing

Select one of the frustrating or Select one of the frustrating or challenging situations in end-of-life challenging situations in end-of-life decision making with patients and/or decision making with patients and/or families that you described earlier.families that you described earlier.

As a table, demonstrate an effective As a table, demonstrate an effective way to respond to the situation. way to respond to the situation.

Helping patients and Helping patients and Families with End-of-Life Families with End-of-Life

DecisionsDecisions

A Competency for A Competency for Hospice Social WorkersHospice Social Workers

Gail Henson, Ph.D.Gail Henson, Ph.D.Hospice Institute, Bellarmine UniversityHospice Institute, Bellarmine University