Chronic Illness and
Bereavement:
Helping Families Cope
Gerald P. Koocher, PhD, ABPP
Simmons College
Understanding Medical Crises
from the Family Perspective
Traditional systems of psychotherapy
have not provided optimal models for
dealing with critical illness and loss in
family contexts.
Thinking first about how we adapt to
medical crises can help us better
understand coping with bereavement.
Rethinking the Approach
An “uncovering and interpreting”
approach often runs counter to the
perceived needs of patients in
medical distress and their family
members.
When a medical crisis strikes, the
psychosocial necessities are usually
discernable on a conscious level.
Problems with traditional systems of
psychotherapy to coping with illness
Presumption of pathology
Medical model
• Common etiology
• Common natural history
• Common treatment
Individual versus family as unit of
treatment
What does the client need?
An opportunity…
…to talk about
and focus on the
trauma.
…to mourn the
loss of the former
self-image and
way of being in
the world.
…to acquire
information, support,
and learn about the
illness and disease
process.
…to make personal
meaning of the
experience.
Time for a new strategy
• Consider how life activities and
goals have become disrupted
• Conceptualize the consequences
as specific threats to patient’s
(or family member’s)
psychological adjustment.
The therapist can begin by…
• Eliciting the client’s narrative
• What has happened?
• What are my immediate concerns?
• How have family members and
friends reacted?
• Beginning to seek out the clients
attributions and deeper concerns.
Specific Threats to Psychological Adjustment
Posed by Chronic Illness
• Disrupted developmental trajectories
• School, work, or career interruptions
• Role changes in family life
• Peer relationships compromised
• Altered self-perceptions
• Uncertain outcomes
•
(e.g., Damocles Syndrome)
• Traumatic stresses (?)
Consider the dimensions of an Illness
along a set of continua as a context
•Onset
–Acute…gradual
•Duration
–Brief … intermittent … lifelong
•Course
–Remitting … relapsing
•Predictability
–Known and predictable … unknown or unpredictable
•Prognosis
–Normal life … terminal
Dimensions of an Illness along
a set of continua as a context
•Burdens of Care
–None … extensive
• Medications, monitoring, appliances, personal
assistance…
•Transmission
–Genetic…traumatic…contagious
•Obviousness
–Blatant…invisible
•Social Tolerance
–Stigmatizing…acceptable
Child en s Pe spec ives
Children’s Perspectives
Bibace, Schmidt, & Walsh (1994)
• Magical Level – Explanations based on
association
• Phenomenism - children describe the illness in terms
of some experience they have had without a clear
cause/effect relationship.
• “A cold is from…when your nose runs.”
• Contagion – the illness description focuses on an
external cause, without explanation of how the cause
led to the effect.
• “A cold is a runny nose, like when you go outside in
the winter time.”
Children’s Perspectives
Bibace, Schmidt, & Walsh (1994)
• Concrete Level – Explanations based on
sequence
• Contamination - Children describe illness in terms of
experienced symptoms that originated in external acts or
situations.
• “You get a cold when you breathe in a lot of cold air and
it stays in your body.”
• Internalization - The child describes how a sequence of
mechanical actions leads to changes in specific body
parts.
• “A cold happens when you get germs in your nose and
they clog it up so you have to sneeze them out.”
Children’s Perspectives
Bibace, Schmidt, & Walsh (1994)
• Abstract Level – Explanations based on
interaction
• Physiological - The child or adult describes an entire
internal disease process including cause and effects on
multiple body parts or organ systems.
• “Germs and viruses are all around us and cold symptoms
are the body’s response to the infection. Coughing and
sneezing are like side effects of the infection.”
• Psychophysiological - The older child or adult can explain
how multiple factors may contribute to the disease
process, including psychological components.
• “People who are under a lot of stress can get run down
and become more susceptible to infections like colds and
flu.”
Debra, age 5
Audio Clip
Children’s Perspectives
(actual quotes)
•Who is Anna Sthesia?
•Cystic Fibrosis or…
–Sixty-five roses
–Sick-sick fibrosis
•Sickle cell anemia or…
–Sick-as-hell anemia
•Diabetes or…
–Die-a-betes
Fundamental Intervention Strategies
Avoid parallel
service delivery;
partner with
physician.
Focus on family
intervention
whenever possible.
Pay attention to
symptom relief.
Normalize the
family’s distress.
Suggest active coping
strategies; providing
sense of control.
Engage around
common fears and
attributions
Known Adjustment Risk Factors in
Chronic Medical Illness
• High risk medical
diagnoses
• Invasiveness of tx
• Duration of tx
• Pre-existing social
or psychological
problems in patient
or nuclear family
• Toxicity of tx
• Economic/insuranc
e problems
• Residual handicaps
• Single parenthood
• Necessity for
appliances or home
care (Burden Index)
• Linguistic or
cultural barriers
Family Risk Factor Checklist
• Time lost from work
• Marital stresses
• Unreimbused medical
costs
• Extended family
issues
• Time away from home
• Single parent
issues
• Substitute child care
for siblings
• Transportation and
parking costs
• Sibling distress
• School problems
Preventive Intervention Planning
• Day-one interventions
• Integrated psychosocial
and medical care
• Routine Quality-of-Life
and psych status
monitoring
• School/work re-integration
programs
• Attention to symptom
control
• Attention to nuclear and
extended family
• Social support systems
• Groups and networks
• Long-term follow-up
program
Medical Crisis Counseling
Short-term time-limited
intervention
Medical Crisis Counseling –
Eight basic issues*
Control
Dependency
Abandonment
Isolation
Self-Image
Stigma
Anger
Death
* Pollin, I. S. & Kanan, S. B. (1995). Medical Crisis Counseling: ShortTerm Therapy for Long-Term Illness. New York: Norton
MCC approach differs From
Traditional Psychotherapies
No presumption of psychopathology
Patients are assumed to have the coping
potential to adjust
An open ended commitment to treatment is
unnecessary.
Lengthy reflection or “insight” orientation may
prove unnecessary or inappropriate.
The Treatment Process In Brief
Initial Consult: The first session is generally a well
structured interview with goal setting.
Counseling Sessions: In the ensuing sessions the
therapist uses a loosely structured format to identify
coping strategies and issues.
Final Session: Treatment is concluded when patient
achieves short term goal set in the first session.
Session 1
Session 2
Session 3
Session 4
Session 5
Number of Sessions Used
20
38%
(Koocher et al, 2001)
42%
15
20%
10
Number of MCC
Sessions Utilized
5
Mean = 4.04
N = 48
0
1 to 2
3to 6
7 to 12
Cost Offset
(Koocher et al, 2001)
On average, the cancer
patients who did not receive
MCC used an additional
$570.78 in mental heath
services.
Adherence vs. Non-Compliance
Adherence
• The process or
condition of adhering.
• Faithful attachment;
devotion: “Adherence
to the rule of law... is a
very important
principle” (Webster).
Compliance
• The act of complying
with a wish, request,
or demand;
acquiescence. In
medicine this means
a willingness to
follow a prescribed
course of treatment.
Medical Non-Adherence
Adherence vs. Non-Compliance
Adherence to (or compliance with) a medication
regimen is generally defined as:
• The extent to which patients take medications as
prescribed or otherwise follow health care providers’
recommendations.
Many people prefer the word "adherence",
because "compliance" suggests passively
following orders, rather than a therapeutic
alliance or contract.
Adherence vs. Non-Compliance
Reports of adherence rates for individual patients generally
cite percentages of prescribed doses of medication actually
taken over a specified period.
Some studies further refine the definition of adherence by
focusing on dose taking (i.e., prescribed number of pills each
day) and timing (taking meds within a prescribed period).
Adherence rates typically run higher among patients with
acute conditions
Persistence among patients with chronic conditions often
declines dramatically after the first six months of therapy.
Adherence vs. Non-Compliance
Average rates of adherence reported in clinical trials
can run misleadingly high due to attention focused
on participants and selection biases.
• Even so, average adherence rates in clinical trials run only 43
to 78 % among patients receiving treatment for chronic
conditions.
No consensual standard exists for what constitutes
adequate adherence.
• Some trials consider rates greater than 80% acceptable, while
others consider rates of greater than 95 % mandatory for
adequate adherence (e.g., treatment of HIV infection).
Adherence vs. Non-Compliance
Physicians have little ability to recognize nonadherence, and interventions to improve rates have
had mixed results.
Poor adherence to medication regimens accounts for
substantial worsening of disease, death, and
increased health care costs in the United States.
Of all medication-related hospital admissions in the
United States, 33 to 69 % follow poor medication
adherence, with a resultant cost of approximately
$100 billion a year.
Measurement?
Direct methods
• observed therapy
• measurement of concentrations of a drug, its metabolite, or a chemical
marker
Indirect methods of measurement of adherence include
• asking the patient about how easy it is for him or her to take prescribed
medication,
• assessing clinical response,
• performing pill counts
• ascertaining rates of refilling prescriptions
• collecting patient questionnaires
• using electronic medication monitors
• measuring physiologic markers
• asking the patient to keep a medication diary
• asking the help of a caregiver, school nurse, or teacher.
Three Typologies
of
Medical Non-Adherence
Koocher, G.P., McGrath, M.L., & Gudas, L. J. (1990).
Typologies of non-adherence in cystic fibrosis. Journal of
Developmental and Behavioral Pediatrics, 11, 353-358.
Medical Non-Adherence
Identifying the
basis for
deviating from
the prescribed
course of
treatment is the
first step.
Type 1: Inadequate Knowledge
Is information
available to patient
and family?
Is the form of
information
comprehensible?
Type 1: Inadequate Knowledge
Is the information
appropriate to age
and culture?
Are the rationales
for components of
treatment clear?
Type 2: Psychosocial Resistance
Consider the
practitioners’
behavior.
• “Referent power”
issues
Type 2: Psychosocial Resistance
Explore social or cultural
pressures.
Assess environmental
factors.
Type 2: Psychosocial Resistance
Assess for
psychological factors
• Attributions
• Motivations
• Defense mechanisms
• Psychopathology
Type 3: Educated Non-Adherence
• Does the patient have adequate
reasoning capacity to consent?
• Can the patient articulate personal
values or preferences?
• Have all reasonable alternatives been
explored?
• Is the patient’s choice morally and
legally defensible?
Inquiring about Non-adherence
• What has your doctor asked you to do
in order to best manage your illness (or
to stay healthy)?
• What are the hardest pieces of medical
advice to follow?
• Which parts to you skip or miss most
often?
Improving Adherence
• Methods available to improve
adherence can be grouped into four
general categories:
1. patient education
2. improved dosing schedules
3. increased hours when the clinic is open
(including evening hours), and therefore
shorter wait times; and
4. improved communication between
physicians and patients.
Improving Adherence
“Most methods of improving adherence
have involved combinations of behavioral
interventions and reinforcements in
addition to increasing the convenience of
care, providing educational information
about the patient's condition and the
treatment, and other forms of supervision
or attention.”
Barriers to Adherence per Osterberg & Blaschke (2005).
Poor provider-patient communication
Pt does not understand disease
Pt does not understand benefits & risks of tx
Pt does not understand proper use of meds
Provider prescribes overly complex regimen
Provider
Patient
Pt’s interaction with
health care system
Poor access or missed
appointments
Poor treatment by
clinic staff
Poor access to meds
High cost of Rx or Tx
Health
Care
System
MD’s interaction with health care
system
Poor knowledge of drug costs
Poor knowledge of insurance
coverage
Low level of job satisfaction
Preventing Burnout
Burnout –
some jobs are worse than others
Five aspects
•Physical
•Emotional
•Behavioral
•Interpersonal
•Attitudinal
Symptoms of Burnout
Anger/Hostility
Chronic Frustration
Depression
Apathy
Exhaustion
• Emotional and physical
Malice and aversion toward patients
Reduced productivity and effectiveness at work
Pre-Disposing Factors
in the Workplace
Role ambiguity
• Vague or inconsistent expectations/demands
Conflicts
Discrepancy between real/ideal work functions
Unrealistic pre-employment expectations
Lack of support at work
Pre-Disposing Factors
in the Workplace
The Asshole Factor
•(temporary and certified status)
•Demeaning, bullying, hypercritical…all too
common in medicine
• Example- medical error reporting
•The No Asshole Rule: Building a Civilized
Workplace and Surviving One That Isn't -- by
Robert I. Sutton
Insulating Factors in the Workplace
Role clarity
Positive feedback and recognition
Enhanced staff autonomy
Providing for stress recovery at work
Social support at work
Predisposing Personal Attributes
Perfectionistic personality
Losses in the family
Chronic helplessness
Permeable boundaries
Substance abuse
Expectations
• The Savior Complex
• External control orientation (I-E Scale)
Insulating Personal Attributes
Sense of personal accomplishment
Realistic criteria
•Including patient outcome expectations
Accurate awareness of personal strengths
and weaknesses
Internal control orientation (I-E Scale)
Betsy Video Clip
Problems with some providers
Personal discomforts
Hasty pursuit of medication
Third party barriers
Family Bereavement Project:
Preventive Intervention Following a Child’s Death
Supported by National Institute of Mental Health
Grant No. R01 MH41791
Gerald P. Koocher, Ph.D. and Beth Kemler, Ph.D.
Principal Investigator and Co-Principal Investigator
Typical loss of social support over time
following the death of a child
Perceived social support
Week 1
Mean level of social support
Week 6
Time elapsed since death
Common patterns of family interaction
following the death of a child
External social support rises sharply after the loss
event and then declines
Intra-familial support can be variable
Congruence
Complementary
Mutual Escape
Distancer and Pursuer
Understanding Basic Tasks of Mourning
• Accepting the reality of the loss
• Grieving: experiencing the pain and
emotion associated with the loss
• Adjusting to the new reality
• Commemoration: relocating
representation of the deceased in
one’s own life
Study Group Assignments
T1
Group 1
T2
3 months
9 months
Group 2
T1
T1
Comparison Group
T2
T2
Therapeutic Family Activities
• Exploring the loss event
• (sharing perspectives)
• Discussing loss histories
• (families of origin)
• Circular questioning about coping
• Bibliotherapy
Modeling a therapeutic stance towards
bereavement:
1) an openness in talking about death via the
questions asked and the direct language used;
2) an acceptance and respect for differences in
coping;
3) acceptance and tolerance of the expression of
strong emotions; and
4) a sense of future perspective (i.e., coping is not
static; what may be useful now in dealing with the
distress, may not be what's needed, or useful in the
future).
This stance also conveys a confidence in people's
ability to grow and change over time.
Therapeutic Family Activities
Discussing objects of remembrance
Letter writing
Understanding attributions
Commemoration
Family coping planning
The Context for Session 1
The intervener provides a safe, nonjudgmental setting in which each
family member has an opportunity
to share his/her reactions.
The first session begins with the
telling of the story of the child's
death.
This serves several purposes:
•It provides each member of the family
with the opportunity to express his own
ideas, reactions, and feelings about what
happened.
•The group story telling also permits each
family member to hear all the others'
perspectives. This can form a foundation
for continued sharing, which can mobilize
mutual support.
•The story telling is also likely to
highlight differences in coping
style and give the intervener the
opportunity to both acknowledge
and legitimize those differences.
•Telling the story will also convey
the family members' conceptions
(and any misconceptions) about
the death.
To assist the telling of the story,
the intervener asks specific
questions pertaining to
•the times of the diagnosis or
accident,
•the funeral, and the period following
the funeral.
• The purpose of the questioning
is to provide some structure for
eliciting everyone's story, as
well as to make clear each
person's conception (or
misconception) regarding
causality, blame, and cognitive
understanding of the death
Intervention Session I:
Understanding each other’s loss experience
Part I – 90 minutes
•Family members tell their stories
•Assure that all speak for themselves
•Exploration of coping
•Circular questioning about perceptions
of self and others
•Education about grief
•Child versus Adult patterns
Session I:
Understanding each other’s loss experience
Part I – 90 minutes (continued)
•Acknowledge pain and discomfort of
discussing the loss again
•Give parents reading material
•The Bereft Parent (Schiff)
•Assign Homework for Session II
•Each family member to choose memory
object for next session, but avoid
discussing the choice at home.
The second part of the first session involves
meeting with the parents apart from the child(ren)
• The parental subsystem is the critical
one in grief work, for it is here that
difficulties most likely to affect the
entire family system will arise.
• One source of stress between the
parents may be different ideas of how
to handle the issue of death within the
family, especially with the surviving
siblings.
• Another frequent source of
tension may result from
asynchrony in the style and/or
timing of parental grieving.
• Parents may disagree on how to
deal with the surviving children.
Differences may have to do with
questions of how open and direct
to be around the topic of death,
how much autonomy to allow,
how strict should limits be, etc.
Session I:
Understanding each other’s loss experience
Part II: parents only- additional 30 minutes
• Explore dyadic issues
•Sources of tension in the relationship (e.g.,
sexual disruption, replacement child, etc.)
• Discuss losses in family of origin context
•How were you taught to deal with loss?
• Review personal loss histories
•What important losses have you suffered
previously?
Session II:
Making contact with the emotional loss
Part I: parents only - first 30 minutes
•Explore interval since first session
•Address any recent concerns
•Normalize the distress of reawakening
grief
•Provide encouragement for coping
efforts made to date
Session II:
Making contact with the emotional loss
Part II: family meeting- 90
minutes
•Two Exercises:
•Remembering the deceased child
•Family letter writing
Session II:
Making contact with the emotional loss
Remembering the deceased child
•What reminder has each person brought?
• Discuss the meaning of the item.
•How is the child remembered.
• Where are the reminders at home?
•Assess idealization.
• Are negative memories tolerated?
• What has been done with the child’s room and belongings?
• Explore cemetery visits.
•Discuss how the family has changed.
Session II:
Making contact with the emotional loss
Family letter writing
• May be literal or figurative, written or taped.
• Young siblings can draw pictures.
• Goal: create emotional object to take home.
• Content:
•Things left unsaid
•Memories shared
•Unanswered questions
Session II:
Making contact with the emotional loss
Family letter writing
• May be literal or figurative, written or taped.
• Young siblings can draw pictures.
• Goal: create emotional object to take home.
• Potential content:
• Things left unsaid
• Memories shared
• Unanswered questions
Session III: Moving on with our lives
Anticipating anniversary
phenomena.
• Which will be most difficult for whom?
Review normal grief and “warning
signs.”
Discuss re-involvement in the world
for each person.
Session III: Moving on with our lives
• Explore meaning-making for each
person
• Philosophy of life
• Hope for the future
• Plan family activity outside the home
• Dealing with relatives and friends.
• Dealing with PIG (people in general)
and their helpful or NOT comments
Warning Signs:
When is professional help needed?
Staying withdrawn from
family and friends
New patterns of aggressive
behavior
Persistent blame or guilt
Accident proneness
Feelings of wanting to die
Acting as though nothing
happened, or happier than
normal
Persistent anxiety; especially
when separating from
parents or surviving children
Unusual and persistent
performance problems at
work or school
Persistent physical
complaints
Extended use of Rx or non-Rx
drugs and alcohol