1. Medical Crises, Chronic Illness, and Loss Gerald P. Koocher, PhD, ABPP Simmons College www.ethicsresearch.com

2.  Understanding medical crises as pre-cursors to loss  Recognizing how some systems of psychotherapy may not prove particularly helpful.  Identifying the key issues.

3.  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.

4.  Presumption of pathology  Medical model focus:  Common etiology?  Common natural history?  Common treatment?  Individual versus family as unit of tx  Evidence based manuals applied too rigidly

5.  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.

6.  …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.

7.  Onset  Acute…gradual  Duration  Brief … intermittent … lifelong  Course  Remitting … relapsing  Predictability  Known and predictable … unknown or unpredictable  Prognosis  Normal life … terminal

8.  Burdens of Care  None … extensive ▪ Medications, monitoring, appliances, personal assistance…  Transmission  Genetic…traumatic…contagious  Obviousness  Blatant…invisible  Social Tolerance  Stigmatizing…acceptable

9.  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

10.  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.

12.  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 (?)

13.  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

14.  Time lost from work  Un-reimbused medical costs  Time away from home  Child care for siblings  Transportation and parking costs  Marital stresses  Extended family issues  Sibling distress  school problems

15.  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

16.  Distance and communication problems  Lack of integrated care  Cultural disconnection  Personal discomforts in addressing complex medical and bereavement issues  Hasty pursuit of medication  Third party barriers

18.  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.

19.  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.

20.  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).

21.  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.

22.  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.

23. 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.

24.  Identifying the basis for deviating from the prescribed course of treatment is the first step.

25.  Is information available to patient and family?  Is the form of information comprehensible?

26.  Is the information appropriate to age and culture?  Are the rationales for components of treatment clear?

27.  Consider the practitioners’ behavior.  “Referent power” issues

28.  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.

29.  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.

30.  Explore social or cultural pressures.  Assess environmental factors.

31.  Assess for psychological factors  Attributions  Motivations  Defense mechanisms  Psychopathology

32.  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?

33.  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?

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

35.  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.

36.  “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.”

38. Supported by National Institute of Mental Health Grant No. R01 MH41791 Gerald P. Koocher, Ph.D. and Beth Kemler, Ph.D. Principal Investigator and Co-Principal Investigator

39. Time elapsed since death Perceived social support Mean social support Week 1 Week 6

40.  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

41.  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

42. T1 T1 T2 T2T1 T2 3 months 9 months Group 1 Group 2 Comparison Group

43.  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

44.  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:

45.  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.

46.  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.

47.  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?

48.  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

49.  Part II: family meeting- 90 minutes  Two Exercises: ▪ Remembering the deceased child ▪ Family letter writing

50.  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.

51.  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

52.  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.

53.  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

54.  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

56.  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.

57.  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.

58.  Try not to protect yourself with distancing.  Just because you have bad news should not prevent you from offering support.

59.  Try to understand and respect the perspective of the recipient.

60.  Deliver the bottom line first, then explain.

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

62.  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.

63.  Be human, and be present.