Transcript Document

Helping Patients and Families
Cope with Medical Crises, Chronic
Illness, and Loss
Gerald P. Koocher, Ph.D., ABPP
DePaul University
www.ethicsresearch.com
INTERFACING WITH THE
MEDICAL SYSTEM
Are you prepared for ACOs and PCMHs?
(Accountable Care Organizations and
Patient Centered Medical Homes)
• Organizational
models for
primary care
that will
improve our
health care
system (?)
Integrated Inter-professional Care
• Understanding the culture of interprofessional
health care practice and functioning as a
team player.
• Working with patients who have medical,
mental health, behavioral health, and comorbid problems in a fast-paced primary care
context.
• Working with a more diverse (ethnically,
socially, and economically) population than
ever before.
• Ability to document the value added by
psychologists’ engagement.
Administrative and Financial
Accountability and Autonomy
• Are you prepare to:
– Seek additional credentials?
• Board certification
–
–
–
–
Integrate your practice?
Co-locate?
Contract?
Become an employee?
How will reimbursement systems
change?
•
•
•
•
Medicare
Medicaid
Insurance exchanges
Global payment systems
– Who takes the risks?
– Who makes “medical necessity” decisions?
• New billing an diagnostic codes
– Who’s codes rule?
“This patient has a rare form of health
insurance.”
Will the ICD Replace the DSM?
New ICD-10 Codes
•
•
•
•
•
•
•
•
•
•
•
V97.33XD: Sucked into jet engine, subsequent
encounter.
Y93.D: Activities involved arts and handcrafts.
SW55.41XA: Bitten by pig, initial encounter​.
W61.62XD: Struck by duck, subsequent encounter.
Z63.1: Problems in relationship with in-laws.
​W220.2XD: Walked into lamppost, subsequent
encounter.
Y93.D: V91.07XD: Burn due to water-skis on fire,
subsequent encounter​.
W55.29XA: Other contact with cow, subsequent
encounter.
W22.02XD: V95.43XS: Spacecraft collision injuring
occupant.
W61.12XA: Struck by macaw, initial encounter.
​R46.1: Bizarre personal appearance.
Integrated Record Systems:
The eMR, ePHI, and e-billing
• Do you want to share your
psychotherapy records with your
proctologist?
• How can you avoid accidentally emailing sensitive material?
• What problems have we seen most
commonly documented?
-Medical Crisis Intervention
-Chronic Illness
-Loss and Bereavement
CONCEPTUALIZING TREATMENT
PLANS
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 selfimage 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
Consider the 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
CHILDREN’S PERSPECTIVES
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.”
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
• Toxicity of tx
• Residual handicaps
• Necessity for
appliances or home
care (Burden Index)
• Pre-existing social
or psychological
problems in patient
or nuclear family
• Economic/insuranc
e problems
• Single parenthood
• Linguistic or
cultural barriers
Family Risk Factor Checklist
• Time lost from
work
• Unreimbused
medical costs
• Time away from
home
• Substitute child
care for siblings
• Transportation
and parking
costs
• Marital stresses
• Extended family
issues
• Single parent
issues
• Sibling distress
• School problems
Preventive Intervention Planning
• Day-one interventions
• Integrated
psychosocial and
medical care
• Routine Quality-ofLife and psych status
monitoring
• School/work reintegration 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 (MCC) –
Eight fears common among medical
patients*
Control
Abandonment
Self-Image
Anger
Dependency
Isolation
Stigma
Death
* Pollin, I. S. & Kanan, S. B. (1995). Medical Crisis
Counseling: Short-Term 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 (Koocher et al, 2001)
20
38%
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
• On average, the cancer
patients who did not receive
MCC used an additional
$570.78 in mental heath
services.
Koocher, G. P., Curtiss, E. K., Pollin, I. S. &
Patton, K. (2001). Medical Crisis Counseling in a
Health Maintenance Organization. Professional
Psychology: Research and Practice, 32, 52-58.
ADDRESSING 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
non-adherence, 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 Types
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.
“You may believe you’ve been
overcharged, but remember,
you’re overmedicated.”
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
“Hi, my name is Kevin.
I’ll be your doctor for today.”
Type 2: Psychosocial Resistance
• Explore social or
cultural pressures.
• Assess environmental
factors.
“You’ve been fooling around with
alternative medicines, haven’t you?”
Type 2: Psychosocial Resistance
• Assess for
psychological
factors
– Attributions
– Motivations
– Defense
mechanisms
– Psychopathology
“This is gonna hurt like hell.”
Type 3: Educated NonAdherence
“Before each of you, you will find a bitter pill
and a glass of water”
Type 3: Educated NonAdherence
• 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?
How not to inquire about Non-adherence
“Well, how long do you want to live?”
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.”
Osterberg, L. & Blachke, T. (2005).
New England Journal of Medicine , 353, 487 – 497.
Table 2
Major Predictors of Poor Adherence to Medication,
According to Studies of Predictors
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
Patient’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
FAMILY BEREAVEMENT
INTERVENTION
Conceptualizing Coping with Loss
• Understanding medical crises as
pre-cursors to loss
• Recognizing how some
approaches to psychotherapy
may not prove particularly helpful.
• Identifying the key issues.
Problems with providers
• Personal discomforts
• Hasty pursuit of medication
• Third party barriers
“I medicate first and ask questions later.”
Rethinking the Approach
• The “uncovering” 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.
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 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
Model 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
• 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 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
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 2nd part of the 1st 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 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 PIGs (people in general) and their
helpful or NOT comments
Warning Signs:
When is professional help needed?
• 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
• 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
CLINICIAN SELF-CARE
Burnout
• 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
– Reference: 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)
References
• Christina Maslach
– Burnout: the Cost of Caring (2003)
– Preventing Burnout and Building Engagement: A
Complete Program for Organizational Renewal
(2000).
– Banishing Burnout: Six Strategies for Improving
Your Relationship with Work (2005)