1. Gerald P. Koocher, PhD, ABPP Simmons College Chronic Illness and Bereavement: Helping Families Cope

2. 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. Understanding Medical Crises from the Family Perspective

3. 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. Rethinking the Approach

4. Presumption of pathology Medical model Common etiology Common natural history Common treatment Individual versus family as unit of treatment Problems with traditional systems of psychotherapy to coping with illness

5. …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. What does the client need? An opportunity…

6. Consider how life activities and goals have become disrupted Conceptualize the consequences as specific threats to patient’s (or family member’s) psychological adjustment. Time for a new strategy

7. 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. The therapist can begin by…

8. 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 (?) Specific Threats to Psychological Adjustment Posed by Chronic Illness

9. 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

10. Burdens of Care – None … extensive Medications, monitoring, appliances, personal assistance… Transmission – Genetic…traumatic…contagious Obviousness – Blatant…invisible Social Tolerance – Stigmatizing…acceptable Dimensions of an Illness along a set of continua as a context

12. 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)

13. 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)

14. 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 Bibace, Schmidt, & Walsh (1994)

15. Debra, age 5 Audio Clip

16. 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 Children’s Perspectives (actual quotes)

17. 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. Fundamental Intervention Strategies

18. Pre-existing social or psychological problems in patient or nuclear family Economic/insuranc e 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) Known Adjustment Risk Factors in Chronic Medical Illness

19. 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 Family Risk Factor Checklist

20. 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 Preventive Intervention Planning

21. Short-term time-limited intervention Medical Crisis Counseling

22. Medical Crisis Counseling – Eight basic issues* 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 * Pollin, I. S. & Kanan, S. B. (1995). Medical Crisis Counseling: Short- Term Therapy for Long-Term Illness. New York: Norton

23. 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.

24. 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.

25. Session 1

26. Session 2

27. Session 3

28. Session 4

29. Session 5

30. Number of Sessions Used (Koocher et al, 2001) Mean = 4.04 N = 48

31. Cost Offset (Koocher et al, 2001) On average, the cancer patients who did not receive MCC used an additional $570.78 in mental heath services.

32. Compliance The act of complying with a wish, request, or demand; acquiescence. In medicine this means a willingness to follow a prescribed course of treatment. Adherence The process or condition of adhering. Faithful attachment; devotion: “Adherence to the rule of law... is a very important principle” (Webster). Adherence vs. Non-Compliance

33. Medical Non-Adherence

34. 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

35. 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

36. 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

37. 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. Adherence vs. Non-Compliance

38. 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. Measurement?

39. 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.

40. Medical Non-Adherence Identifying the basis for deviating from the prescribed course of treatment is the first step.

41. Type 1: Inadequate Knowledge Is information available to patient and family? Is the form of information comprehensible?

42. Type 1: Inadequate Knowledge Is the information appropriate to age and culture? Are the rationales for components of treatment clear?

43. Type 2: Psychosocial Resistance Consider the practitioners’ behavior. “Referent power” issues

44. Type 2: Psychosocial Resistance Explore social or cultural pressures. Assess environmental factors.

45. Type 2: Psychosocial Resistance Assess for psychological factors Attributions Motivations Defense mechanisms Psychopathology

46. 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? Type 3: Educated Non-Adherence

47. 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? Inquiring about Non-adherence

48. 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

49. “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.” Improving Adherence

50. 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 Pt’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

51. Preventing Burnout

52. Burnout – some jobs are worse than others Five aspects Physical Emotional Behavioral Interpersonal Attitudinal

53. Symptoms of Burnout Anger/Hostility Chronic Frustration Depression Apathy Exhaustion Emotional and physical Malice and aversion toward patients Reduced productivity and effectiveness at work

54. 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

55. 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 The No Asshole Rule: Building a Civilized Workplace and Surviving One That Isn't -- by Robert I. Sutton

56. Insulating Factors in the Workplace Role clarity Positive feedback and recognition Enhanced staff autonomy Providing for stress recovery at work Social support at work

57. 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)

58. 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)

60. Betsy Video Clip

61. Personal discomforts Hasty pursuit of medication Third party barriers Problems with some providers

62. Family Bereavement Project: Preventive Intervention Following a Child’s Death Supported by National Institute of Mental Health Grant No. R 01 MH 41791 Gerald P. Koocher, Ph.D. and Beth Kemler, Ph.D. Principal Investigator and Co-Principal Investigator

63. Typical loss of social support over time following the death of a child Time elapsed since death Perceived social support Mean level of social support Week 1 Week 6

64. 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

65. 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 Understanding Basic Tasks of Mourning

66. Study Group Assignments T1 T1 T2 T2T1 T2 3 months 9 months Group 1 Group 2 Comparison Group

67. Exploring the loss event (sharing perspectives) Discussing loss histories (families of origin) Circular questioning about coping Bibliotherapy Therapeutic Family Activities

68. 1 ) an openness in talking about death via the questions asked and the direct language used; 2) an acceptance and respect for differences in coping; 3) acceptance and tolerance of the expression of strong emotions; and 4) a sense of future perspective (i.e., coping is not static; what may be useful now in dealing with the distress, may not be what's needed, or useful in the future). This stance also conveys a confidence in people's ability to grow and change over time. Modeling a therapeutic stance towards bereavement:

69. Discussing objects of remembrance Letter writing Understanding attributions Commemoration Family coping planning Therapeutic Family Activities

70. The intervener provides a safe, non- judgmental setting in which each family member has an opportunity to share his/her reactions. The first session begins with the telling of the story of the child's death. The Context for Session 1

71. This serves several purposes: It provides each member of the family with the opportunity to express his own ideas, reactions, and feelings about what happened. The group story telling also permits each family member to hear all the others' perspectives. This can form a foundation for continued sharing, which can mobilize mutual support.

72. The story telling is also likely to highlight differences in coping style and give the intervener the opportunity to both acknowledge and legitimize those differences. Telling the story will also convey the family members' conceptions (and any misconceptions) about the death.

73. 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.

74. The purpose of the questioning 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

75. 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 Intervention Session I: Understanding each other’s loss experience

76. 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. Session I: Understanding each other’s loss experience

77. 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. The second part of the first session involves meeting with the parents apart from the child(ren)

78. 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.

79. 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 I: Understanding each other’s loss experience

80. 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

81. Part II: family meeting- 90 minutes Two Exercises: Remembering the deceased child Family letter writing Session II: Making contact with the emotional loss

82. 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

83. 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 II: Making contact with the emotional loss

84. Family letter writing May be literal or figurative, written or taped. Young siblings can draw pictures. Goal: create emotional object to take home. Potential content: Things left unsaid Memories shared Unanswered questions Session II: Making contact with the emotional loss

85. 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

86. 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

87. 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 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 Warning Signs: When is professional help needed?