Approaching the End of Life: Relational and Ethical Challenges for Patients,

Couples, and Families

John S. Rolland, MD, MPH, Professor of Psychiatry, Northwestern University Feinberg School of Medicine; Executive Co-Director, Chicago Center for Family Health

Froma Walsh, PhD, Firestone Professor Emerita, University of ChicagoExecutive Co-Director, Chicago Center for Family Health

Session # H2

CFHA 20th Annual ConferenceOctober 18-20, 2018 • Rochester, New York

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Learning ObjectivesAt the conclusion of this session, the participant will be able to:

1. Identify practical applications of Rolland’s Family Systems Illness Model and Walsh’s Family Resilience Framework in end-of-life care with patients, couples, and families.

2. Identify core principles and guidelines to address challenging relational and ethical issues with death and dying, promote optimal patient wellbeing, and make the most of limited time.

3. Identify how to effectively address problems in collaboration and value conflicts regarding end-of-life decisions among health insurers/facilities, health and mental health professionals, patients, and families.

PresenterPresentation NotesInclude the behavioral learning objectives you identified for this session

1. Rolland, J.S. (2018). Helping couples and families navigate illness and disability: An integrated approach. New York: Guilford Press.2. Rolland, J.S. (2017). Neurocognitive impairment: Addressing couple and family challenges. Family Process, vol 55, no 4, 799-818.3. Rolland, J.S., Emanuel, L., & Torke, A. (2017). Applying a family systems lens to proxy decision making in clinical practice and research. Family Systems &

Health, vol 35, no 1, 7-18.4. Rolland, J.S. Chronic Illness and the Life Cycle. (2016). In M. McGoldrick, N. Garcia-Preto, & E. Carter (Eds.), The Expanded Family Life Cycle: Family, and Social

Perspectives. 5th edition. Boston: Allyn & Bacon. 5. Rolland, J.S. (2012). Mastering Family Challenges: Coping with Serious Illness and Disability. In F. Walsh (Ed.) Normal Family Processes. 4th Edition. New

York: Guilford. 6. Walsh, F. (2016). Strengthening family resilience (3rd ed.), New York: Guilford Press.7. Walsh, F. (Ed.). (2009). Spiritual Resources in Family Therapy. (2nd ed,) Guilford.8. Walsh, F. (2018). Loss and bereavement in the family: A systemic framework for recovery and resilience. In B. Fiese, (Ed.), APA Handbook of Contemporary

Family Psychology, Vol. 1. Washington, DC: American Psychological Association Press.9. Walsh, F. & McGoldrick, M. (2013). Bereavement: A family life cycle perspective. Family Science, 4 (1), 20-27.10. Walsh, F. (2007). Traumatic loss and major disasters: Strengthening family and community resilience. Family Process, 46, 207–227.
11. Walsh, F., & McGoldrick, M. (Eds.).(2004). Living beyond loss: Death in the family (2nd ed.). New York: Norton.12. Nadeau, J. W. (2008). Meaning-making in bereaved families: Assessment, intervention, & future research. In M. Stroebe et al. (Eds.), Handbook of

bereavement research (pp. 511–530). Washington, DC: APA13. Weingarten, K. (2010). Reasonable hope: Construct, clinical applications, and supports. Family Process, 49, 5-25.

Bibliography / References

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Please list at least FIVE (5) references for this presentation that are no older than 5 years.

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Learning AssessmentA learning assessment is required for CE credit.

A question and answer period will be conducted at the end of this presentation.

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PresenterPresentation NotesFamily Systems – Illness Model

ANTICIPATORY LOSS

Experience of Living in the Face ofPossible, Probable or Inevitable:

Illness(including genetic risk)

Disability(Cognitive & Physical)

Suffering

Death

PresenterPresentation NotesTime Line & Phases of Illness

ILLNESS TYPE

Onset

Course

Outcome

Disability

Uncertainty

COMPONENTS OF

FAMILY FUNCTIONING

Organization, Communication,

Beliefs, Development

Figure 1.1

Family Systems Illness Model: Three Dimensions

ILLNESS TIME PHASES

Initial Crisis, Chronic, Terminal

Family Consultations

Prevention-oriented

At crucial transitions

“Psychosocial Check-ups”

Family & Couple

Multigenerational Developmental Perspective

Inquire about:

• Multigenerational experiences with illness, loss, & crisis– Experiences with specific condition or type of illness– Culturally-informed caregiving traditions and expectations

• Current timing and possible impact on individual and family life cycle planning

• Upcoming transitions in individual and family life cycles

Communication

Early communication essential with progressive disorders (e.g. advance directives, proxy decision making)

Secrecy & Denial

Facilitating Reconciliation & Healing of Estranged or Conflictual Relationships

CommunicationWho will be included or excluded and why?• Couple • Parent - Child• Patient/Family – Healthcare Team

What topics are off-limits and why?

Communication with Children & AdolescentsNo evidence kids hurt by age-appropriate info.Gradual approach associated with less problems in Adolescents.

Blocked communication Associated with isolation, anxiety, depression for all members.

Communication: Adult Children•Initial discussions with parent(s) and with each other

•Inquiry about and involvement of adult children’s nuclear families

•Equitable role functionsPrimary caregiver(s)GenderGeographic location

•Periodic review in relation to transitions in disease course and individual or family life cycle

TERMINAL PHASE DEVELOPMENTAL TASKS

◦ Shared Acknowledgement of the Impending Loss

◦ Sharing the Process of Anticipatory Grief and Addressing Unfinished Family Issues

◦ Support the Terminally-ill Member

◦ Help Survivors and Dying Member Live as Fully as Possible with Time Remaining

◦ Beginning or Continuing the Family Reorganization Process

◦ Reinvesting in Other Relationships and Life Pursuits

From: Rolland, J. S. Families, Illness, & Disability: An Integrative Treatment Model, New York: Basic Books, 1994.

Terminal Phase Periods

Transition from Chronic to Terminal Phase

Living during the Terminal Phase

Transition to Death

Needs of Dying Person

Love and Affection

Pain Control

Preservation of Dignity and Self Worth

Therapeutic MeetingsIndividual

Couple

Family/Extended Family

Health Care Provider Transitions

Transition from Aggressive Treatment to Palliative Care

Greater Involvement of Palliative & Hospice Care Providers (also PCP and Behavioral Healthcare)

Greater Home vs. Hospital-Based Treatment

Balance Family & Professional Caregiving

Key Family Beliefs• Multigenerational legacies about illness/loss

• Normative illness experience

• Mind-Body Interaction

• Mastery, Control, Acceptance

• Cause of Illness

• Course & Outcome

• Ethno-Cultural & Spiritual Beliefs

• Gender

Beliefs about Cause of IllnessPunishment for sins

Blame of Self, Family Member, or Family Unit

Genetic link to a Parent

Injustice (“Why me, I’ve been a good person”)

Bad Luck

Beliefs about Illness Course & Outcome

Flexible participation over time“We will do everything we can to master cancer.”

Rigid control of biology“We have to beat cancer!”

“Healing” Self & System vs. Cure Illness

Some Difficult SituationsParents with Small Children

Resented Parent

Son/Daughter Seeking Approval from Dying Parent

“Enmeshed” Family System

Skilled Care Placement

Skilled Care Placement◦ Reaching limits of caregiving needs and stamina

◦ Meaning to family members

Grieving Losses• With progressive disorders (e.g. Alzheimer’s) loss of person and accustomed relationship occurs in steps over time before actual death

• Loss of eye contact, Hearing impaired member’s voice• Being recognized

Lack of normative rituals or acknowledgement by healthcare providers

Isolation in grief of spouse or other key caregivers

Dementia: e.g. Alzheimer’s Disease

Ambiguous Loss (Pauline Boss)

Member is physically alive, but can become psychologically no longer present

Unrealistically expect member to sustain and maintain roles

Family needs to begin reorganization process

Coping with Ambiguous Loss

•Boundary Ambiguity: –Is impaired member still included in family processes? –Does communication bypass the affected member?

Therapeutic goal for family members:Learn to live with paradox that someone we love can be both absent and present at the same time.Helps regain sense of control and equanimity

End-of-Life Decision-MakingAdvance Directives

Proxy Situations

Value Conflicts: Professionals-Patient-Family

Euthanasia/Socially-Assisted Dying

Clinician Self-Awareness and Self-Care

Personal Values & Multigenerational Experiences related to:

• Threatened loss

• End-of-Life issues

• Fears about own mortality

Fostering Family Resilience in Approaching Death and Loss:

Meaning-making, Hope, and Spirituality

Collaborative Family Healthcare Association Annual Conference ~ University of Rochester

October 20, 2018

Froma Walsh, PhDFirestone Professor Emerita, University of Chicago

Co-Director, Chicago Center for Family Healthwww.ccfhchicago fwalsh@uchicago.edu

How can we help the dying and their loved onesApproach end-of-life challenges

Alleviate SufferingMake the Most of Precious Time

Repair Frayed BondsCelebrate & Honor the Life That was Lived

Help the Bereaved to Move Forward in their LivesTo Live and Love Fully

Understanding Grief & Mourning Processes

“Normal” grief process: Many varied pathways ◦ No single “healthy” sequence or timetable

Dual Processes: Attention oscillates: grief / practical challengesMourning & recovery processes take time –complex, ◦ Not quick “closure” or “just bounce back”

Need to respect differences in couple and family members: – developmental stage, relationship with deceased -- cultural norms, gender; personal style, implications of loss-- history of previous losses; impact for future

Death Ends A Life –But Not A Relationship

Continuous Bonds• Not Detachment -• Transformation From Physical Presence To

Spiritual Connections, Memories Stories, Photos, Memorabilia, KeepsakesDeeds, Legacies

Losses are multi-faceted: LOSS OF FUNCTIONING, CONTROL, DIGNITY ~DYING

PERSON LOSS OF IMPORTANT PERSON(S), LOVED ONE

Death, separation, ambiguous loss (missing; dementia)

SIGNIFICANT RELATIONSHIP(S) IMPORTANT ROLE- E.G. BREADWINNER INTACT FAMILY UNIT; KIN NETWORK; COMMUNITY HOME, WORK, LIVELIHOOD HOPES & DREAMS FOR FUTURE SHATTERED ASSUMPTIONS

Normality, predictability, security, trust

SYSTEMIC PERSPECTIVE ON LOSS

Loss affects all family members, their relationships, and family functioning.• Shock waves reverberate throughout the family network ~ youngest, eldest • Different members may express varied aspects of loss:

-- Shock, sadness, anger, fear, blame, cheer others-- Denial, minimization, distancing

The family approach to loss influences the adaptation of all members,their relationships, and the family unit.

Facilitate Family Adaptational Tasks1. Acknowledge, share experience of loss

Rituals: honor the life, mark death/passage, Community support for survivors

2. Open communication: Meaning-making & range of emotions Respect different reactions, recovery paths

3. Reorganize family systemBuffer disruptions; Re-stabilize; Rebuild Lives

4. Reinvest in other relationships, life pursuits;Avoid flight, precipitous replacement Transform bonds with lost loved one:

From physical presence to spiritual connections, Memories, stories, deeds, legacies for future

Complicated Loss Situations SUDDEN, UNANTICIPATED PROLONGED DYING; SUFFERING; END-OF-LIFE DECISIONS UNTIMELY, E.G. DEATH OF CHILDVIOLENT DEATH / LOSS

• Accidental or negligence• Murder or Suicide

• COMPLEX, RECURRENT TRAUMA, LOSSES• Community violence; • Major Disaster• War, Combat Related, war-torn region: refugees

Complicated Loss Situations (cont’d.)

AMBIGUOUS LOSS -- E.G. MISSING LOVED ONE; DEMENTIA

DISENFRANCHISED - UNACKNOWLEDGED, MINIMIZED - e.g. perinatal loss; LGBTQ partner, Stigmatized - e.g. suicide; HIV/AIDs

SPIRITUAL CRISIS: E.G. SIN & PUNISHMENT; INJUSTICE; EXISTENTIAL ISSUES RE. LIFE / DEATH

CONFLICTUAL OR ESTRANGED RELATIONSHIP

TRAUMATIC PAST LOSS– COMPLEX FAMILY DYNAMICS

Strengthening Resilience: Ability to overcome serious life challenges

Involves:Coping + Adaptation + Positive Growth

~~~~~Nurtured & Sustained by: Intimate Bonds

Family & Community ConnectionsCultural & Spiritual Resources

Facilitate Resilience Strengthen Relational Processes: Beliefs & Practices that Enable Family Members to:

• Share Grief, Suffering & Struggle • Affirm and Build on Strengths & Potential

Pain + Positive coping, adaptive responses • Navigate Disruptive Transitions, Dislocations • Prepare for Future Challenges• Re-vision Hopes and Future Dreams

The painful experience can yield personal, relational, & spiritual growth -- Post-traumatic growth studies (PTG)

Keys to Relational ResilienceBelief Systems

1. Meaning-Making of Loss Experience2. Positive Outlook: Hope ~ Master the Possible3. Transcendence & Spirituality

Organizational Patterns4. Flexibility to Adapt / Restabilize / Reorganize5. Connectedness- Mutual support; Team Effort6. Social & Community Resources

Communication Processes7. Clear, consistent information8. Share Range of Feelings; Find Joy, Humor, Respite9. Collaborative Problem-solving / Preparedness

Belief System:Heart and Soul of Healing & Resilience◦ Roots in family history, socio-cultural worldview, life experiences

How families view their loss situation & survivors’ futureExplore, encourage facilitative beliefs and actions:

1. Making Meaning of death & loss experience• Causal Attributions; Sense(less); Agency in response

2. Positive Outlook: Hope ~ Master the Possible; Accept what can’t be changed; tolerate uncertainty

3. Transcendence -- Spirituality◦ Solace, Inspiration, Future Aspirations◦ Transformation - Priorities, Purpose, Growth◦ Compassionate Action to Benefit Others

1. Meaning -MakingFacilitate Relational View of ResilienceContextualize Distress, Depathologize, Humanize

Help Gain Sense of CoherenceView shared loss challenges as:◦Meaningful, Comprehensible, Manageable

Appraise Death/Loss Situation; ◦Explanatory, causal: Why me? Why NOT me?◦Sense of Injustice◦Senseless deaths? Can’t find meaning?

Future Expectations / Catastrophic Fears: ◦ What can we do? Active Coping

Realistic Hope

Master the Art of the Possible:

Do all you can With what you have In the time you have In the place you are

Spiritual ResourcesDimension of Human Experience:

Bio-Psycho-Social-Spiritual

• TRANSCENDENT, PERSONAL BELIEFS AND PRACTICES • ACTIVE INVESTMENT IN DAILY LIFE AND RELATIONSHIPS• FOSTERS MEANING, WHOLENESS, HARMONY • DEEP CONNECTION WITH ALL OTHERS, NATURE, UNIVERSE• CAN FIND SPIRITUAL NOURISHMENT IN / OUTSIDE RELIGION:

– Humanistic Values–- Contemplative Practices (Prayer, Meditation)– Nature; Creative Arts– Compassionate acts for others; Social Action–- Intimate Bonds, Kinship, Community, Humanity & Human Condition

Spiritual Matters With Death & Loss ~ ~ ~ ~ ~

Respectfully Explore Spiritual Beliefs about DeathFamily Cultural & Faith Rituals & Practices

• Final Rites; Burial / Cremation; Memorials • Indigenous traditions, healing approaches

Mystery of the Beyond / Afterlife• Heaven / Hell? Paradise? Reincarnation• Connection and/or Contact with Deceased?• Reunion with Loved Ones, Join Ancestors?• Spiritual Crisis, Concerns? e.g. sin & judgment; hell

• Injustice- Loss of Faith “How Could God”• Respect client faith or non-faith beliefs, practice• With Atheists: Existential concerns, Meaning of Life & Death

Facilitate Resilience Over Time Preparing for Death, Loss

◦ Make the most of precious time ◦ Family life review: Multiple perspectives◦ Joys, Regrets, Appreciations; Clarify, Update

◦ Seize opportunity to heal old wounds◦ Begin to envision, plan for survivors’ future

In Immediate Wake of Loss: Attention Oscillates ◦ Grieving & Attending to Adaptive Challenges◦ Buffer, Pace Disruptive Transitions

Honor Varied Needs, Time to Grieve & Heal Live & Love Fully in Facing Death and Beyond Loss

Practice Guidelines

• Be fully present in the face of loss, grief• Offer safe haven for sharing intense feelings • Not a Problem to Solve: We can’t stop death; bring back loved one;• We can be at their side, supporting their meaning-making,

And facilitate mutual support between loved ones • Humanize, Contextualize Grief, & Intense Distress:

• Shame, Blame; De-pathologize• “Normalize” as Understandable, Common in Tragic Loss

• Explore meanings and implications of loss;• We do not provide meaning; Avoid Assumptions, Platitudes!

• Consult, link with hospice, chaplains, pastoral resources.

Practice Guidelines (continued)

View Bereavement Process as Opportunity for Learning, Change, & Growth Shift Focus Gradually to Possibilities◦Potential for Mastery, Healing, & Growth◦Re-vision Future Hopes & Dreams: ◦Construct “New Normal”

◦Forge New Purpose from the TragedyIntegrate Loss Experience into Chapters of Life

and all Relationships

“I want everyone to leave the room except the cat!”

Death ends a Life

But notA Relationship

Facing our Own Mortality

Guardian Angel ~ Continuing Bonds

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Approaching the End of Life: �Relational and Ethical Challenges for Patients, Couples, and FamiliesFaculty DisclosureConference ResourcesLearning Objectives��At the conclusion of this session, the participant will be able to:Bibliography / ReferencesLearning AssessmentSlide Number 7Slide Number 8Slide Number 9Slide Number 10Family ConsultationsMultigenerational �Developmental PerspectiveCommunicationCommunicationCommunication: Adult ChildrenSlide Number 16Terminal Phase PeriodsNeeds of Dying PersonTherapeutic MeetingsHealth Care Provider TransitionsKey Family BeliefsBeliefs about Cause of IllnessBeliefs about Illness Course & OutcomeSome Difficult SituationsSkilled Care PlacementGrieving LossesDementia: �e.g. Alzheimer’s DiseaseCoping with Ambiguous LossEnd-of-Life Decision-MakingClinician Self-Awareness and Self-CareSlide Number 31Slide Number 32Understanding Grief & Mourning ProcessesDeath Ends A Life – �But Not A Relationship�Losses are multi-faceted:SYSTEMIC PERSPECTIVE ON LOSS� Facilitate Family Adaptational Tasks��1. Acknowledge, share experience of loss �Rituals: honor the life, mark death/passage, � Community support for survivors�2. Open communication: �Meaning-making & range of emotions �Respect different reactions, recovery paths �3. Reorganize family system�Buffer disruptions; Re-stabilize; Rebuild Lives�4. Reinvest in other relationships, life pursuits;�Avoid flight, precipitous replacement �Transform bonds with lost loved one:� From physical presence to spiritual connections, � Memories, stories, deeds, legacies for future Complicated Loss SituationsComplicated Loss Situations (cont’d.)�����Strengthening Resilience: �Ability to overcome serious life challenges�Involves:�Coping + Adaptation + Positive Growth��~~~~~Facilitate ResilienceKeys to Relational ResilienceBelief System:� Heart and Soul of Healing & Resilience1. Meaning -MakingRealistic Hope� ��Master the Art of the Possible:��Do all you can �With what you have � In the time you have � In the place you are��Spiritual Resources�Dimension of Human Experience:�Bio-Psycho-Social-Spiritual �Slide Number 47Facilitate Resilience Over Time�Practice GuidelinesPractice Guidelines (continued)Slide Number 51Slide Number 52Slide Number 53Slide Number 54Session Evaluation