Managing the “Other” Patient
in Long-Term Care: Skills for
Working with Families
Daniel Bluestein, MD, CMD, Certificate Added Qualifications-Geriatrics
Professor & Director, Geriatrics Division
Department of Family & Community Medicine
Eastern Virginia Medical School
Norfolk, Virginia
Patricia Latham Bach, PsyD, RN, MS
Post-Doctoral Fellow
Center for Neuropsychological Services
Kaiser-Permanente
Sacramento, California
Need for Geriatrics Education
• A demographic
imperative
• Need knowledge,
skills & attitude:
• Part of job as Family
Physician
• Self-efficacy for same
Not always the easiest “sell”
• Especially in longterm care.
• Solutions
• Experiences with
mentors
• Build on core Family
Medicine Precepts
(transferable).
• Active role
Families, LTC, & Education
• Opportunity to apply Family Systems
Concepts
• Family Medicine learner in leadership role
• Transferable to other settings, types of pts
• Rewarding
• Responding to need
• Families often appreciate
OBJECTIVES
1.
Discuss the Pearlin Stress Process Model as a conceptual
framework.
2.
Review Family Systems concepts that can impact
communication with families.
3.
Summarize principles for conduct of family meetings.
4.
Questions and discussion
Family in LTC-we know…
• Placement may be stressful (not always)
• Continued involvement persists post placement
• Nature of this involvement focuses on ADL/IADL assistance, not
social roles
• Benefit of family involvement and of interventions to
facilitate this involvement suggested but not established
• Gaugler JE. Family involvement in residential long-term care: a
synthesis and critical review. Aging Ment Health 2005;9(2):105-18.
Family in LTC research-limits
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Cross-sectional designs
Small samples
Use range of LTC settings, not just NHs
Quantitative rather than qualitative
approach
• Need for ethnic diversity in study
populations
Caveats
• Our empirical database is limited
• Lots of ways to do this (what we describe
worked for us).
• It’s not just a meeting but a process of
continuing communication
Pearlin Caregiver Stress Process
Model
Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process:
an overview of concepts and their measures. Gerontologist 1990 ;30(5):583-94.
Family Dysfunction predictors of
negative outcomes
• Caregivers who reported poor family functioning had
higher ratings of strain and burden.
• Family dysfunctions included:
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Negative expressed emotion (hostility, criticism, sadness…)
Poor problem solving
Impaired delegation of practical & emotional tasks
Excessive emotional distance or closeness
• Caution: cross sectional study
• Corollary: These are red flags
Heru AM, Ryan CE, Iqbal A. Family functioning in the caregivers of patients with
dementia. Int J Geriatr Psychiatry 2004; 19(6):533-7.
Structural Family Theory (Minuchin)
• Family interactions are regulated predictable
patterns that determine how family members:
communicate,
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manage disagreements,
distribute leadership roles,
form alliances,
negotiate distance or closeness.
• Relatively stable and resistant to change.
• Whereas healthy families adapt, others become
rigid or disorganized under stress such as LTC
placement.
Common patterns-Enmeshment
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Family members have poor
boundaries, limited autonomy, and
high emotional reactivity
Cope poorly with stress
Closed off to outside influence
(from staff or MD).
Indicators:
• Speak for each other
• Interrupt
• Sit closely
May be very demanding,
unrealistic expectations, “us vs.
them” mentality, insist on
aggressive care.
Mitrani VB, et al. Adapting the structural family systems rating to assess the patterns
of interaction in families of dementia caregivers. Gerontologist 2005;45(4):445-55.
Case
• Ms B, aged 90, progressive dementia-Daughter
from California (LCSW), calls daily, into
“alternative medicine” , dislikes “chemicals” (but
insists mom has bottle of scotch in her room)
• Dtr looks like younger version of mom, speaks for
her, answers questions for her.
Common patterns-Disengagement
• Family members are
emotionally distant or
unresponsive
• ? Depressed, burnout, poor
physical health
• Neglect
• Use of denial or diversion when
problems to be discussed
• No discussion of care
preferences, advanced
directives.
Case Example-Disengagement
• 79 yo Hispanic male in assisted living
• Arthritis, anxiety & possible OCD, reflux, mild memory deficits,
smokes.
• Always dissatisfied, has demanded moves from several prior
facilities
• Life-long conflicted relationships with children
• Lonely, high utilization of care,
• Daughter lives 1 mile away, never visits, leading to
increased isolation, somatization behavior.
• Unwilling to transport to outside appointments
• Feels father should be “no-code” despite mild degree of memory &
physical impairment
Common patterns-Hierarchical
• MD may unwittingly
threaten authority of
family leader-set up for
conflict & adversarial
relationship.
• Leader may be the "health
expert"
• person you want on your
side or at least want to
know about.
• If “expert’s” advice
contradicts yours, you will
be ignored
Thrower SM; Bruce WE; Walton RF. The family circle method for integrating family
systems concepts in family medicine. J Fam Pract 1982; 15(3); 451-7.
Case Example-Hierarchical
• 95 yo Caucasian woman with renal failure, DJD,
dementia
• Failing in her apartment, staff wishes her to move
to long-term care.
• Son, a physician, challenges her degree of
cognitive decline, demands meeting with staff,
critical of staff competence, when neuropsych
testing recommended, brings her to his institution
to use his “own” consultant
• Agrees to placement thereafter
Other key concepts-Triangulation
• Occurs when a 3rd person
is drawn into a 2–person
system to diffuse anxiety
or conflict or to
communicate with each
other through a 3rd party.
• Corollaries:
• If the index pt buffers
conflict among other family
members, they may be
unwilling to limit care.
• May gang up on you
Case-example, triangulation
• 81 yo Caucasian woman, multiple
hospitalizations related to cognitive
impairment.
• Daughter & son-in-law: argue when
visiting.
• Relate better & work as “team” when mom
develops pressure ulcer, criticizing care.
Coalitions
• When 2 people collude
against a 3rd
• May exclude other key
family members.
• Trap for MD-recognize
and don’t take sides. There
may be deliberate effort to
draw you in
Coalitions –case example
• 90 yo man-PD, CHF, mild dementia. Family has
received conflicting information about prognosis
during recent hospitalization for CHF. Goals of
care discussed /w wife (POA) & daughters.
• Older Daughter calls you later to express her &
her sister’s concerns, feels her mother is not acting
in her father’s interest (e.g., wife seeks
conservative care)
• Criticizes her mother as someone who never made
a dime but happy to spend what dad earned, wants
his $$ rather than spend on his care…
Overview
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Develop a baseline
Crates positive 1st impression of reaching out.
Facilitates their understanding of this philosophy
Creates alliances
Enhances cultural competence
Goal is to develop a win-win at the outset
Environmental pre-assessment also important
Identify family as experts about their loved one
Family meeting ≠ Family therapy
session
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Boundaries different
Use of “I” different
Don’t need to modify behavior as a rule
Common ground established (pt)
Different assessment measures
Conducting supportive rather than therapeutic
intervention
Planning the Family Meeting
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Set goals
Establish empathetic, common ground
Elicit Family concerns
Assess the family in relation to patient
Provide overview of careplan
McDaniel S, Campbell TL, Seaburn DB. Family-Oriented Primary Care:
a Manual for Medical Providers. Springer-Verlag, Inc., New York: 1990. 73-86.
Set goals
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Find out who the players are & how they interact
Information & collateral history?
Buy-in to treatment plan
“Philosophy of care” (e.g., code status,
Aggressiveness of testing and therapeutic
modalities)
• Assistance-e.g. help overcome patient resistance,
social support for depressed patients…
• Support of caregivers
• Avoid trouble
Set the stage
• Thank them for coming
• Review purpose of meeting
• Elicit their expectations
• What do you of your loved one’s condition &
prognosis (what do you expect from here?)
• Functional assessment
Building partnership
• What is your relationship to the patient?-e.g., spouse, child,
etc
• How long have you been a caregiver?
• What are the things that have been most stressful to you
with this transition, how can we most help you?
• What concerns do you have for the future?
• Acknowledge the ongoing stress of having family member
in LTC
Patient Assessment, Basic
• Geriatric
• MMSE & Clock-draw
• GDS
• Basic & Instrumental ADLs.
• Medical-what is the status and prognosis of the patient's
various chronic illnesses:
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CHF
COPD
Renal Failure
Cancers
Other
Functional Assessment, family
perspective& collateral History
• Neuropsychiatric Inventory (10 minutes)
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Behavior
Mood
Some cognition
Some functional
• Clinical Dementia Rating Scale (10 minutes)
• Cognition
• ADLs
• IADLS
Have Family complete prior to visit if possible
Facilitation techniques
• Allow 1 person to speak at a time
• Be sure everyone has a chance to say something if
they choose
• Use reflection for clarification
• Normalizing (when faced with this situation, many
people are [stressed/depressed/angry/guilty/etc.].
Is this the case for you?)
• Emphasize strengths & positives (how have they
coped successfully in the past)
Unobtrusive Assessment-verbal
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Who talks & who doesn't
Who argues or agrees with whom
Who is the leader or “health expert
What they say, how they say it,
Unobtrusive Assessment-nonverbal
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Who’s there & who’s not
Who sits near whom
Body language
How they act
• Be ready for emotion
• Have tissues handy
Historical appraisal
• Any other recent changes or stressors
• How they have handled stressful situations
in the past.
• Where are they in terms of the “family
lifecycle?”
• Are there prior medical experiences or
medical beliefs that shape current situation
Presenting information
• Present your assessment of patient's status
• Goal setting & priorities-jointly establish
”philosophy of care”
• Know what they already know or believe
• Reconcile various sources of info (e.g.,
“different” information from other physicians).
• Are all family members “on the same page”?
What if you recognize dysfunction
• Your goal is to assist the family in
communicating or managing conflict
sufficiently enough to address the
immediate patient care issues, not "fix"
family conflicts.
Mediating differences of opinion
• Facilitate healthy communication
• Everyone has a chance to speak
• “I” statements
• Reframe negative or judgmental comments
• Facilitate rational decision-making
• Brainstorming to problem-solve
• Help group objectively weigh risks & benefits
• “Punt”
• Arrange a follow-up meeting if consensus not possible
• Suggest consultation & referral
Lang F, Marvel K, Sanders D, Waxman D, Beine KL, Pfaffly C, McCord E. Interviewing
when family members are present. Am Fam Physician 2002; 65(7):1351-4.
Referrals
• Consider when a high level of unresolved conflict
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affects care.
Suggest support groups
Link with informational resources
Referral for family counseling (if all else fails over
several meetings).
Set boundaries as to what you can and cannot do,
ensuring that all needed information has been
provided (“ball in their court”).
When you are on shaky ground
• Build trust
• Get “the high ground”
• Be informed
• Be proactive
• Project calm caring wisdom (don’t let frustration show)
• It’s a process
Pitfalls
• Talking rather than listening
• Being pulled into coalitions.
• Not having a meeting
• Excluding the patient (if lucid)
Evaluating resistance &
dissatisfaction
• Caregiver not acting in patient’s best interest
• Depressed
• $$$ incentives
• Conflictual relationship with patient
• Covert or absent players-Are there conflicting views of the
approach to care?
• Disconnect between culture of medicine & family health
beliefs?
You are a part of the system
(Like it or not)
• Your own skills, attitudes & behavior reflect what
you learned in your family of origin. Corollary:
Understanding where you come from can make
you more effective.
• The clinician (and the facility and staff) are also
now part of the index family’s system
Team-based approach
• Geriatrics is a team sport. Players include but not
limited to:
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Psychologists,
Social workers /case-managers,
Nursing (RNs and CNAs),
Chaplains,
PT/OT
Dietician
• Other team members will observe things you may
not pick up on, ask questions in a different style.
• “Good Cop/Bad Cop”
There is no 1 best way
• Your approach will depend on time
available, other team members, style…
• Flexibility maximizes the possibilities of
success.
• No matter what you do, the return on your
investment of effort & time is worth it.
Further reading
• McGoldrick M, Gerson R, Shellenberger S.
Genograms: Assessment and Intervention
(2nd edition). New York, W.W. Norton &
Co. 1999.
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Managing the “Other” Patient in Long