Chronic Illness and Bereavement: Helping Families Cope

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

2. 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.

3. 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.

4. 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

5. What does the client need?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.

6. 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.

7. 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.

8. 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 (?)

9. 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

10. Dimensions of an Illness along 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

11. Children’sPerspectives

12. Children’sPerspectivesBibace, 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.”

13. Children’sPerspectivesBibace, Schmidt, & Walsh (1994) • 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.”

14. Children’sPerspectives Bibace, Schmidt, & Walsh (1994) • 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.”

15. Debra, age 5Audio Clip

16. Children’sPerspectives(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

17. Fundamental Intervention Strategies • 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

18. Known Adjustment Risk Factors in Chronic Medical Illness • High risk medical diagnoses • Invasiveness of tx • Duration of tx • Toxicity of tx • Residual handicaps • Necessity for appliances or home care (Burden Index) • Pre-existing social or psychological problems in patient or nuclear family • Economic/insurance problems • Single parenthood • Linguistic or cultural barriers

19. Family Risk Factor Checklist • Time lost from work • Unreimbused medical costs • Time away from home • Substitute child care for siblings • Transportation and parking costs • Marital stresses • Extended family issues • Single parent issues • Sibling distress • School problems

20. Preventive Intervention Planning • Day-one interventions • Integrated psychosocial and medical care • Routine Quality-of-Life and psych status monitoring • School/work re-integration programs • Attention to symptom control • Attention to nuclear and extended family • Social support systems • Groups and networks • Long-term follow-up program

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

22. Control Abandonment Self-Image Anger Dependency Isolation Stigma Death Medical Crisis Counseling –Eight basic issues* *Pollin, I. S. & Kanan, S. B. (1995). Medical Crisis Counseling: Short-Term Therapy for Long-Term Illness. New York: Norton

23. 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. MCC approach differs From Traditional Psychotherapies

24. 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. The Treatment Process In Brief

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

32. Adherence vs. Non-Compliance • Adherence • The process or condition of adhering. • Faithful attachment; devotion: “Adherence to the rule of law... is a very important principle” (Webster). • 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.

33. Medical Non-Adherence

34. 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.

35. 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.

36. 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).

37. 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.

38. 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.

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. 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?

47. 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?

48. Improving Adherence • Methods available to improve adherence can be grouped into four general categories: • patient education • improved dosing schedules • increased hours when the clinic is open (including evening hours), and therefore shorter wait times; and • improved communication between physicians and patients.

49. 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.”

50. Barriers to Adherence per Osterberg & Blaschke (2005). Poor provider-patient communication Ptdoes not understand disease Pt does not understand benefits & risks of tx Pt does not understand proper use of meds Provider prescribes overly complex regimen Provider Patient 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 Health Care System MD’s interaction with health care system Poor knowledge of drug costs Poor knowledge of insurance coverage Low level of job satisfaction