Helping Patients and Families Cope with Medical Crises, Chronic Illness, and Loss Gerald P. Koocher, Ph.D., ABPP DePaul University

Helping Patients and Families Cope with Medical Crises, Chronic

Illness, and Loss

Gerald P. Koocher, Ph.D., ABPP

DePaul University

www.ethicsresearch.com

http://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 co-morbid 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 e-mailing sensitive material?

• What problems have we seen most commonly documented?

CONCEPTUALIZING TREATMENT PLANS

-Medical Crisis Intervention

-Chronic Illness

-Loss and Bereavement

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 acquire information, support, and learn about the illness and disease process.

• …to make personal meaning of the experience.

• …to talk about and focus on the trauma.

• …to mourn the loss of the former self-image and way of being in the world.

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 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 (?)

Consider the dimensions of an Illnessalong 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 Illnessalong 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 PerspectivesBibace, 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.”


• 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.”


• 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

• Normalize the family’s distress.

• Suggest active coping strategies; providing sense of control.

• Engage around common fears and attributions

• Avoid parallel service delivery; partner with physician.

• Focus on family intervention whenever possible.

• Pay attention to symptom relief.

Known Adjustment Risk Factors in Chronic Medical Illness

• Pre-existing social or psychological problems in patient or nuclear family

• Economic/insurance problems

• Single parenthood• Linguistic or

cultural barriers

• High risk medical diagnoses

• Invasiveness of tx• Duration of tx• Toxicity of tx• Residual handicaps• Necessity for

appliances or home care (Burden Index)

Family Risk Factor Checklist

• Marital stresses• Extended family

issues• Single parent

issues• Sibling distress • School problems

• Time lost from work

• Unreimbused medical costs

• Time away from home

• Substitute child care for siblings

• Transportation and parking costs

Preventive Intervention Planning

• Attention to symptom control

• Attention to nuclear and extended family

• Social support systems

• Groups and networks• Long-term follow-up

program

• Day-one interventions• Integrated

psychosocial and medical care

• Routine Quality-of-Life and psych status monitoring

• School/work re-integration programs

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). Pollin, I. S. & Kanan, S. B. (1995). Medical Crisis Medical Crisis Counseling: Short-Term Therapy for Long-Term Illness.Counseling: Short-Term Therapy for Long-Term Illness. New York: NortonNew 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)Number of Sessions Used (Koocher et al, 2001)

38%42%

0

5

10

15

20

1 to 2 3to 6 7 to 12

Number of MCCSessions Utilized

20%

Mean = 4.04Mean = 4.04N = 48N = 48

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.


• 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.


• 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).


• 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. Koocher, G.P., McGrath, M.L., & Gudas, L. J. (1990). Typologies of non-adherence in cystic (1990). Typologies of non-adherence in cystic fibrosis. Journal of fibrosis. Journal of Developmental and Behavioral Developmental and Behavioral Pediatrics, 11Pediatrics, 11, 353-358., 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.”


• Explore social or cultural pressures.

• Assess environmental factors.

“You’ve been fooling around with alternative medicines, haven’t you?”


• Assess for psychological factors– Attributions– Motivations– Defense

mechanisms– Psychopathology

“This is gonna hurt like hell.”

Type 3: Educated Non-Adherence

“Before each of you, you will find a bitter pill and a glass of water”

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?

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 2Major Predictors of Poor Adherence to Medication,

According to Studies of Predictors

Barriers to Adherence per Osterberg & Blaschke (2005).

Patient Provider

Health Care

System

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

MD’s interaction with health care system Poor knowledge of drug costs Poor knowledge of insurance

coverage Low level of job satisfaction

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

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 ProjectPreventive Intervention Following a

Child’s Death

Supported by National Institute of Mental Supported by National Institute of Mental HealthHealth

Grant No. R01 MH41791Grant No. R01 MH41791Gerald P. Koocher, Ph.D. and Beth Kemler, Ph.D.Gerald P. Koocher, Ph.D. and Beth Kemler, Ph.D.

Principal Investigator and Co-Principal InvestigatorPrincipal Investigator and Co-Principal Investigator

Typical loss of social support over time following the death of a child

Time elapsed since death

Per

ceiv

ed s

ocia

l sup

port

Mean social support

Week 1

Week 6

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


• Part II: family meeting- 90 minutes

– Two Exercises:

• Remembering the deceased child

• Family letter writing


• 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.


• 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 non-Rx 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)

Documents

Helping Patients and Families Cope with Medical Crises, Chronic Illness, and Loss Gerald P. Koocher, Ph.D., ABPP DePaul University