Medical Crises, Chronic Illness, and Loss

Gerald P. Koocher, PhD, ABPPSimmons Collegewww.ethicsresearch.com

Understanding medical crises as pre-cursors to loss

Recognizing how some systems of psychotherapy may not prove particularly helpful.

Identifying the key issues.

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.

Presumption of pathologyMedical model focus:

Common etiology? Common natural history? Common treatment?

Individual versus family as unit of txEvidence based manuals applied too

rigidly

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.

…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.

Onset Acute…gradual

Duration Brief … intermittent … lifelong

Course Remitting … relapsing

Predictability Known and predictable … unknown or

unpredictablePrognosis

Normal life … terminal

Burdens of Care None … extensive

▪ Medications, monitoring, appliances, personal assistance…

Transmission Genetic…traumatic…contagious

Obviousness Blatant…invisible

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

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.

Disrupted developmental trajectoriesSchool, work, or career interruptionsRole changes in family lifePeer relationships compromisedAltered self-perceptionsUncertain outcomes

(e.g., Damocles Syndrome)Traumatic stresses (?)

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

Time lost from work

Un-reimbused medical costs

Time away from home

Child care for siblings

Transportation and parking costs

Marital stressesExtended family

issuesSibling distress

school problems

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

Distance and communication problems

Lack of integrated careCultural disconnectionPersonal discomforts in addressing

complex medical and bereavement issues

Hasty pursuit of medicationThird party barriers

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.

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.

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.

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 Developmental and Behavioral Pediatrics, 11Behavioral Pediatrics, 11, 353-358., 353-358.

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?

Is the information appropriate to age and culture?

Are the rationales for components of treatment clear?

Consider the practitioners’ behavior. “Referent

power” issues

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.

Explore social or cultural pressures.

Assess environmental factors.

Assess for psychological factors Attributions Motivations Defense

mechanisms Psychopatholog

y

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?

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

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.

“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 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

Time elapsed since death

Per

ceiv

ed s

ocia

l sup

port

Mean social support

Week 1

Week 6

External social support rises sharply after the loss event and then declines

Intra-familial support can be variable

Congruence

Complementary

Mutual EscapeDistancer 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

T1T1

T1T1

T2T2

T2T2T1T1

T2T2

3 3 monthmonthss

9 months9 months

Group 1

Group 2

Comparison Group

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

How to do it and why:

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 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.

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?

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 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.

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

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

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.

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.

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.

Try not to protect yourself with distancing. Just because

you have bad news should not prevent you from offering support.

Try to understand and respect the perspective of the recipient.

Deliver the bottom line first, then explain.

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

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.

Be human, and be present.