Medical Crises, Chronic Illness, and Loss

Gerald P. Koocher, PhD, ABPPApril 26, 2013

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.

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

Distance and communication problems

Lack of integrated careCultural disconnectionPersonal discomforts in addressing

complex medical and bereavement issues

Hasty pursuit of medicationThird party barriers

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.