Helping Patients and Families Cope with Medical Crises, Chronic Illness, and Loss

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

2. Interfacing with the medical system

3. 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 (?)

4. 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.

5. Administrative and Financial Accountability and Autonomy • Are you prepare to: • Seek additional credentials? • Board certification • Integrate your practice? • Co-locate? • Contract? • Become an employee?

6. 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.”

7. 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. 

8. 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?

9. -Medical Crisis Intervention -Chronic Illness -Loss and Bereavement Conceptualizing treatment plans

10. 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.

11. 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.

12. 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

13. 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.

14. 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.

15. 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.

16. 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 (?)

17. 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

18. 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

19. Children’sPerspectives

20. Children’sPerspectives Bibace, 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.”

21. Children’sPerspectives Bibace, 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.”

22. 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.”

23. 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

24. 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.

25. 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)

26. 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

27. 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

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

29. 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). Medical Crisis Counseling: Short-Term Therapy for Long-Term Illness. New York: Norton

30. 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.

31. 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.

32. Session 1

33. Session 2

34. Session 3

35. Session 4

36. Session 5

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

38. 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.

39. Addressing non-adherence

40. 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.

41. 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.

42. 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).

43. 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.

44. 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.

45. Three Types 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.

46. 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.”

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

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

49. Type 2: Psychosocial Resistance • Consider the practitioners’ behavior. • “Referent power” issues “Hi, my name is Kevin. I’ll be your doctor for today.”

50. Type 2: Psychosocial Resistance • Explore social or cultural pressures. • Assess environmental factors. “You’ve been fooling around with alternative medicines, haven’t you?”