Transcript Helping Patients and Families Cope

Medical Crises, Chronic Illness, and Loss
Gerald P. Koocher, PhD, ABPP
Simmons College
www.ethicsresearch.com
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Understanding medical crises as
pre-cursors to loss
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Recognizing how some systems of
psychotherapy may not prove
particularly helpful.
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Identifying the key issues.
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Traditional systems of psychotherapy have
not provided optimal models for dealing with
critical illness and loss in family contexts.
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Thinking first about how we adapt to medical
crises can help us better understand coping
with bereavement.
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Presumption of pathology
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Medical model focus:
 Common etiology?
 Common natural history?
 Common treatment?
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Individual versus family as unit of tx
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Evidence based manuals applied too rigidly
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An “uncovering” approach often runs
counter to the perceived needs of
patients in medical distress and their
family members.
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When a medical crisis strikes, the
psychosocial necessities and stresses are
often discernable on a conscious level.
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…to talk about and
focus on the
trauma.
…to mourn the
loss of the former
self-image and
way of being in the
world.
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…to acquire
information, support,
and learn about the
illness and disease
process.
…to make personal
meaning of the
experience.
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Onset
 Acute…gradual
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Duration
 Brief … intermittent … lifelong
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Course
 Remitting … relapsing
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Predictability
 Known and predictable … unknown or
unpredictable
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Prognosis
 Normal life … terminal
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Burdens of Care
 None … extensive
▪ Medications, monitoring, appliances, personal
assistance…
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Transmission
 Genetic…traumatic…contagious
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Obviousness
 Blatant…invisible
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Social Tolerance
 Stigmatizing…acceptable
 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
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Avoid parallel
service delivery;
partner with
physician.
Focus on family
intervention
whenever possible.
Pay attention to
symptom relief.
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Normalize the
family’s distress.
Suggest active
coping strategies;
providing sense of
control.
Engage around
common fears and
attributions.
Disrupted developmental trajectories
 School, work, or career interruptions
 Role changes in family life
 Peer relationships compromised
 Altered self-perceptions
 Uncertain outcomes
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 (e.g., Damocles Syndrome)
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Traumatic stresses (?)
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High risk medical
diagnoses
Invasiveness of tx
Duration of tx
Toxicity of tx
Residual handicaps
Burden Index
 Regimen complexity,
necessity for appliances, or
home care aides, etc.
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Pre-existing social
or psychological
problems in patient
or nuclear family
Economic/insurance
problems
Single parenthood
Linguistic or cultural
barriers
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Time lost from work
Un-reimbused
medical costs
Time away from
home
Child care for
siblings
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Transportation and
parking costs
Marital stresses
Extended family
issues
Sibling distress
 school problems
Day-one interventions
Integrated
psychosocial and
medical care
 Routine QoL and psych
status monitoring
 School/work reintegration programs
 Sensitivity training for
practitioners
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Attention to symptom
control
 Attention to nuclear
and extended family
 Social support systems
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 Groups and networks
Long-term follow-up
program
 Bereavement rounds
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Distance and communication problems
Lack of integrated care
Cultural disconnection
Personal discomforts in addressing complex
medical and bereavement issues
Hasty pursuit of medication
Third party barriers
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Adherence to (or compliance with) a
medication regimen:
 The extent to which patients take medications as
prescribed or otherwise follow health care
providers’ recommendations.
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Many people prefer the word "adherence",
because "compliance" suggests passively
following orders, rather than a therapeutic
alliance or contract.
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Reports of adherence rates for individual patients
generally cite percentages of prescribed doses of
medication actually taken over a specified period.
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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).
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Adherence rates typically run higher among patients with
acute conditions
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Persistence among patients with chronic conditions often
declines dramatically after the first six months of therapy.
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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.
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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).
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Physicians have little ability to recognize nonadherence, and interventions to improve rates have
had mixed results.
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Poor adherence to medication regimens accounts
for substantial worsening of disease, death, and
increased health care costs in the United States.
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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.
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Direct methods
 observed therapy
 measurement of concentrations of a drug, its metabolite, or a
chemical marker
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Indirect methods of measurement of adherence include
 asking the patient about how easy it is for him or her to take
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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.
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.
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Identifying the
basis for
deviating from
the prescribed
course of
treatment is
the first step.
Is information
available to
patient and
family?
 Is the form of
information
comprehensible?
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Is the information
appropriate to
age and culture?
 Are the rationales
for components
of treatment
clear?
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Consider the
practitioners’
behavior.
 “Referent
power” issues
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The referent power of health-care
practitioners, as contrasted with their
expert, coercive, reward and legitimate
power, proves most effective when
patients internalize medical
recommendations.
Give acceptance statements and maintain
positive regard (avoid judgmental stance).
 Show genuine caring about client’s welfare.
 Encourage self-disclosure to promote insight.
 Use selective positive feedback.
 Build sense of personal agency.
 Attribute endorsed norms to respected secondary
source
 Elicit client’s commitment to taking action.
 Plan for termination at onset to promote
internalization, but offer real or symbolic
continuing connection.
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Explore social or
cultural pressures.
Assess
environmental
factors.
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Assess for
psychological
factors
 Attributions
 Motivations
 Defense
mechanisms
 Psychopathology
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?
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Osterberg, L. & Blaschke, T. (2005). Drug
Therapy: Adherence to Medication. New
England Journal of Medicine, 353, 487-497.
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Methods available to improve adherence can
be grouped into four general categories:
 patient education
 improved dosing schedules
 increased access (e.g., hours when access to
clinician or modes of response)
 improved communication between practitioners
and patients.
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“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.”
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
Perceived social support
Week 1
Mean social support
Week 6
Time elapsed since death
External social support rises sharply after the
loss event and then declines
 Intra-familial support can be variable
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Congruence
Complementary
Mutual Escape
Distancer and Pursuer
 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
T1
Group 1
T2
3 months
9 months
Group 2
T1
T1
Comparison Group
T2
T2
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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
How to do it and why:
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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.
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The purpose of the questions 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
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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.
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The parental subsystem remains critical one in grief affecting
the entire family system.
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Parents may differ on how to handle discussing death within
the family, especially with the surviving siblings.
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Another frequent source of tension may result from
asynchrony in the style and/or timing of parental grieving.
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Parents may disagree on how to deal with behavioral issues in
the surviving children.
 How open and direct to be around the topic of death, how much
autonomy to allow, limit setting, etc.
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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?
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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
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Part II: family meeting- 90 minutes
 Two Exercises:
▪ Remembering the deceased child
▪ Family letter writing
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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.
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Family letter writing activity
 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
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.
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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
Staying withdrawn from
family and friends
 Persistent blame or guilt
 Feelings of wanting to die
 Persistent anxiety;
especially when separating
from parents or surviving
children
 Unusual and persistent
performance problems at
work or school
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New patterns of
aggressive behavior
 Accident proneness
 Acting as though nothing
happened, or happier than
normal
 Persistent physical
complaints
 Extended use of Rx or nonRx drugs and alcohol
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Hart, C., Harrison, A., & Hart, C. (2006). Breaking Bad News. In
Mental health care for nurses: Applying mental health skills in the
general hospital. (pp. 82-94): Blackwell Publishing: Malden.
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Most important: how do we know that the patient
will perceive the news as 'bad'?
 A patient may receive definite news--whether or not it is
perceived by clinicians as 'bad'--as conferring a degree of
certainty and feel grateful for this, particularly if it
confirms a long held suspicion or belief.
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Equally important: information that the bearer may
have thought of as relatively unimportant may have
a severe impact on the patient and/or family
members.
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Someone who knows the patient/family.
The person who has all the information available,
to cover any questions the patient or family may
ask.
 Who is that? The primary care physician, as the person
with overall responsibility for the patient's treatment,
a team, a 'specialist' in such matters as breaking bad
news?
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Communicating bad news is most closely
associated with having to tell patients about a
terminal prognosis.
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Try not to
protect
yourself with
distancing.
 Just because
you have bad
news should
not prevent you
from offering
support.
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Try to
understand
and respect
the
perspective
of the
recipient.
 Deliver
the
bottom
line first,
then
explain.
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The "good
news/bad
news
approach
does not help
if the news is
only really
bad.
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Have a plan or help
the recipient to
engage in developing
one.
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When stress is high
written information
can help.
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Set up ongoing
support and
availability.
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Be
human,
and be
present.