Transcript Slide 1

Assisting Families: Navigating
the Shifting Sands of Evolving
Illness
Terry Altilio LCSW
Department of Pain Medicine & Palliative
Care
Beth Israel Medical Center
Family Defined
 Family - individuals identified by the patient as their
primary supports regardless of blood or legal ties.
 Family caregivers - unpaid individuals who provide or
arrange for essential assistance to a relative or friend
who is ill.
 Extended family & intergenerational influences
Levine 2004
Family Process
 Cohesive families are resilient; draw on a
stable foundation of trust & affection
 In families where attachments are disrupted,
bonds weak or ambivalent, distance & / or
conflict prevail
King & Quill 2006
Family
 Unit of Care ?
– Caregivers
 Part of the Team ?
 Part of the Solution ?
 Part of the Problem ?
The Patient’s Context
Understanding of personhood involves social
network that help define the core identity of
the patient
Levine & Zuckerman 2004
Personhood of the Patient
 May include family problems that are
exacerbated & exposed in setting of illness
– Shame
– Regret
– Protectiveness
– Last chance
Family & Team
 Shared responsibility
– Health care system cannot exist without
collaboration & cooperation of family
– Cost & care shifting to family
– Decisions often made that involve participation &
burden (fair limit on sacrifice)
– Presumptions derive from Western medicines focus
on individual autonomy
Levine & Zuckerman 2004
A Range of Family Roles
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Share
Care
Challenge
Quality control
Litigate
Advocate
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Observe
Assist pt’s thinking
Assert values
Represent history
Link to pt’s prior identity
Prior world of the family
Working with families requires an
ethic of negotiation &
accommodation
Levine & Zuckerman 2004
Patient/Family Narratives
Mr. K, 67 married man dx - head & neck cancer being treated for
radiation induced mucositis. His wife of 40 yrs sleeps in his hospital
room, 2 children & adult grandchildren are involved advocates &
participants in his care. In addition to the emotional impact of
having a loved family member in pain, difficulty in swallowing
created additional worry about nutritional status. While mucositis
is often expected & time limited, the combined effect of pain &
diminished oral intake exacerbated family distress. The
relationship with palliative team was tinged with anger, suspicion
& dissatisfaction. As medications were trialed, his pain improved
somewhat but opioid induced confusion developed & necessitated
change in medication.
Setting A Context
 Technology & medical advances invite
– Choices made from a growing menu of options
– Evaluation of values & beliefs that inform decisions
– Thoughtfulness as responses to illness & expectations
may be less sustainable as diseases become chronic,
technology & media, litigation & legislation change
the practice world
Setting a Context
 Each family brings their own experiences, culture &
history to an illness
 Within families there are unique relationships &
expectations
 Illness requires reorganization; threat to homeostasis
 Authority patterns & family roles shift & evolve
 New normal may be challenged repeatedly
Advanced Illness May Require
 Adaptations
– How we see ourselves ?
– How we balance counting on ourselves; counting
on others ?
– What values & beliefs inform our
 Life
 Relationships
 Decisions ?
Adaptation & Loss
 Illness itself can create feelings of loss as we
adapt to changing realities
– Healthy self
– Private self
– Goals
– Illusion of control & certainty
Communication
 Whether through words, silence or behaviors
– What is said
– What is realized
 Involving different languages
– Evolving process
– Medicine
– Health & illness
– Private language of the family
Care imitates language; that is we
tend to relate to people the same
way we write & talk about them.
Monroe, et al 1992
Language Alerts
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Dysfunctional
Entitled, VIP
Abusive
Unrealistic
Crazy
Difficult
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In Denial
Demanding
Borderline
Addicts
Non-compliant/ adherent
Overwhelmed
Evolving Illness Requires
 Continuing communication
 Exposure of patients, family & staff
 Consciousness about changing needs & ongoing
impact
 Review & revisions of treatment decisions with
special attention to
– Symptoms
– Changing minds
– Distress – patients, family, clinicians
Shifting Sands
In a Setting of Shifting Sands of
Evolving Illness
Evolving Illness - What We May
Experience
A range of responses, physical, emotional & cognitive
 Fatigue, sleeplessness
 Sadness, anger, denial, disbelief, fear, guilt, turmoil,
hopelessness, worry, anxiety, depression
 Beliefs, expectations, hopes, poor concentration,
worrisome thoughts
Changes in the Environment
– Actual & Symbolic
 Equipment
 Home structure
 Living arrangements
 Etc, etc, etc
– Impact on pattern of family’s life
Some impacts & demands implicit in the
illness experience for “good enough”
families
Impact of Caregiving
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Financial Stability
Physical Wellbeing
Psychological Wellbeing
Relationships - Intimate/Social
Family Assessment
 Assessment
– Coping style
– Communication Style
– Conflict/Crisis Resolution Skills
Family Assessment
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Cultural variables
Generational issues
Developmental stage
Family structure
 Decision making
process
 Role changes
 Intimacy & sexuality
 External supports
History: Patient & Family
– Illness experience
– Loss
– Pre-existing stresses
– Abuse
– Psychiatric disorders
– Substance use & abuse
Interface with systems that have
greater or less stability & institutional
health & speak a unique & confusing
language
Families Can Be Complex
 Ingrained patterns of relating
 View as a unit &
 As individuals in context of
– Culture, values, emotional & cognitive style
 Strengths & challenges
 Speak their language
 Patients need family for support, as allies & in
some instances as protectors
Precipitating Stressors
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Period of transition (loss of familiar)
Proximity to death & loss
Technology
Media
Strong emotions
On display
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Compounding Complexity
– Psychiatric co- morbidities
– Substance use or abuse issues
– History of sexual or physical abuse
– Psychosocial problems
– Adherence issues
– Conflicting staff opinions
– Loss & adaptation
– Crisis; “ last chance”
Hospice & Palliative Care
 With threat of impending loss
– Feelings of vulnerability intensify & reactivate
 Regression & memories in which person felt
–Helpless
–Deprived
–Defenseless
 Emotions flare & behaviors may represent
childhood survival skills that are unsuccessful in
current environment
Context for Staff
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“Walk into a play”
“Missed the first two acts”
“Foreigners” entering an established group
Patients may be less difficult until………
Know Yourself
Just as our patients & families bring their
unique histories so do we – Who challenge us ?
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VIPs
Angry people
Helpless & dependent
Young, old
Persons who abuse substances
……………………………..
& after all is said & done…..Singular
experience for patients & family;
one of many for us………..
Colin Parkes
References
 Groves & Beresin. 1999. Difficult patients, difficult
families. New Horizons.
 King & Quill. 2006. Working with Families in Palliative
Care. Journal of Palliative Medicine.
 Levine. 2000. Always on Call: When Illness Turns
Families into Caregivers. United Hospital Fund.
 Snelling. 1990. The role of the family in relation to
chronic pain: review of the literature. Journal of
Advanced Nursing.
 Vachon, MLS. The Stress of Professional Caregivers.
Oxford Textbook of Palliative Medicine. Oxford
University Press. 1998.