Helping Patients and Families Cope

1
Helping Patients and Families Cope

• Medical Crises, Chronic Illness, and Loss

Gerald P. Koocher, PhD, ABPP Simmons
College www.ethicsresearch.com
2
Conceptualizing the Case

• Understanding medical crises as pre-cursors to
  loss
• Recognizing how some systems of psychotherapy may
  not prove particularly helpful.
• Identifying the key issues.

3
Understanding Medical Crisesfrom 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.

4
Problems in applying traditional psychotherapy
models to medical crises

• Presumption of pathology
• Medical model focus
• Common etiology?
• Common natural history?
• Common treatment?
• Individual versus family as unit of tx
• Evidence based manuals applied too rigidly

5
Rethinking the Approach

• An 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 and stresses are often discernable on
  a conscious level.

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What does the client need to mobilize coping?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.

7
Consider the dimensions of illness along a set
of continua

• Onset
• Acutegradual
• Duration
• Brief intermittent lifelong
• Course
• Remitting relapsing
• Predictability
• Known and predictable unknown or unpredictable
• Prognosis
• Normal life terminal

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Dimensions of an Illnessalong a set of continua

• Burdens of Care
• None extensive
• Medications, monitoring, appliances, personal
  assistance
• Transmission
• Genetictraumaticcontagious
• Obviousness
• Blatantinvisible
• Social Tolerance
• Stigmatizingacceptable

9
Childrens Perspectives

• 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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Fundamental Intervention Strategies

• Avoid parallel service delivery partner with
  physician.
• Focus on family intervention whenever possible.
• Pay attention to symptom relief.

• Normalize the familys distress.
• Suggest active coping strategies providing sense
  of control.
• Engage around common fears and attributions.

11
Attend to trajectory disruption-Conceptualize
the consequences of specific threats to patients
(or family members) psychological adjustment in
terms of how life activities and goals are
disrupted.
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Specific Threats to Psychological
AdjustmentPosed 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 (?)

13
Known Adjustment Risk Factors

• 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.

• Pre-existing social or psychological problems in
  patient or nuclear family
• Economic/insurance problems
• Single parenthood
• Linguistic or cultural barriers

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Other Family Risk Factors

• Time lost from work
• Un-reimbused medical costs
• Time away from home
• Child care for siblings

• Transportation and parking costs
• Marital stresses
• Extended family issues
• Sibling distress
• school problems

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Preventive Intervention Planning

• Day-one interventions
• Integrated psychosocial and medical care
• Routine QoL and psych status monitoring
• School/work re-integration programs
• Sensitivity training for practitioners

• Attention to symptom control
• Attention to nuclear and extended family
• Social support systems
• Groups and networks
• Long-term follow-up program
• Bereavement rounds

16
Provider-linked barriers

• 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

17
Non-Adaherence
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What do we mean?Adherence vs. Non-Compliance

• Adherence to (or compliance with) a medication
  regimen
• 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.

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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.

20
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).

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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.

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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.

23
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.
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Medical Non-Adherence

• Identifying the basis for deviating from the
  prescribed course of treatment is the first step.

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Type 1 Inadequate Knowledge

• Is information available to patient and family?
• Is the form of information comprehensible?

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Type 1 Inadequate Knowledge

• Is the information appropriate to age and
  culture?
• Are the rationales for components of treatment
  clear?

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Type 2 Psychosocial Resistance

• Consider the practitioners behavior.
• Referent power issues

28
Rodin, J. Janis, I.L. (1979). The Social Power
of Health-Care Practitioners as Agents of Change.
Journal of Social Issues, 35 (1), 6081.

• 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.

29
How to exercise referent power

• Give acceptance statements and maintain positive
  regard (avoid judgmental stance).
• Show genuine caring about clients welfare.
• Encourage self-disclosure to promote insight.
• Use selective positive feedback.
• Build sense of personal agency.
• Attribute endorsed norms to respected secondary
  source
• Elicit clients commitment to taking action.
• Plan for termination at onset to promote
  internalization, but offer real or symbolic
  continuing connection.

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Type 2 Psychosocial Resistance

• Explore social or cultural pressures.
• Assess environmental factors.

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Type 2 Psychosocial Resistance

• Assess for psychological factors
• Attributions
• Motivations
• Defense mechanisms
• Psychopathology

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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 patients choice morally and legally
  defensible?

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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?

34
Recent Review Article

• Osterberg, L. Blaschke, T. (2005). Drug
  Therapy Adherence to Medication. New England
  Journal of Medicine, 353, 487-497.

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Improving Adherence

• 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.

36
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.

37
Bereavement Intervention
38
Family Bereavement ProjectPreventive
Intervention Following a Childs 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
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Typical loss of social support over time
following the death of a child
Week 1
Mean social support
Perceived social support
Week 6
Time elapsed since death
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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
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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 ones own life

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Study Group Assignments
T1
T2
Group 1
3 months
9 months
Group 2
T2
T1
T1
T2
Comparison Group
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Model Intervention Session I Understanding each
others 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

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How to do it and why

• 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

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Session I Understanding each others 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.

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Why add a separate meeting with parents?

• The parental subsystem remains critical one in
  grief affecting the entire family system.
• Parents may differ on how to handle discussing
  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
  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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Session I Understanding each others 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?

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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

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Session II Making contact with the emotional
loss

• Part II family meeting- 90 minutes
• Two Exercises
• Remembering the deceased child
• Family letter writing

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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 childs room and
  belongings?
• Explore cemetery visits.
• Discuss how the family has changed.

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Session II Making contact with the emotional
loss

• 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

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Session IIIMoving 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.

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Session IIIMoving 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

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Warning SignsWhen 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 non-Rx drugs and alcohol

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Delivering Bad News
56
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.

• 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.
• 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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Who should convey the particular news?

• 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?
• Communicating bad news is most closely associated
  with having to tell patients about a terminal
  prognosis.

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Avoid Aloofness

• Try not to protect yourself with distancing.
• Just because you have bad news should not prevent
  you from offering support.

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Use Empathy

• Try to understand and respect the perspective of
  the recipient.

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Be Direct

• Deliver the bottom line first, then explain.

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Good News, Bad News

• The "good news/bad news approach does not help if
  the news is only really bad.

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Follow Through

• Have a plan or help the recipient to engage in
  developing one.
• When stress is high written information can help.
  
• Set up ongoing support and availability.

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Show Concern and Encouragement

• Be human, and be present.