Family as the “Other Patient” in Transitions of Care

1. Family as the “Other Patient” in Transitions of Care Patricia Bach, PsyD, RN & Dan Bluestein, MD, CMD, AGSF VAMDA Annual Conference September 19, 2015

2. Drs. Bach and Bluestein have no financial incentives to report.

3. Learning Objectives • Identify challenges faced by LTC providers, patients and families during transitions of care. • Identify relevant tools and resources for families and providers available from various transitions of care organizations. • Discuss effective provider-family communication strategies to maximize outcomes in transitions of care.

4. “There was an important job to be done and Everybody was sure that Somebody would do it. Anybody could have done it, but Nobody did it….Everybody blamed Somebody when Nobody did what Anybody could have done. – Anonymous https://amda2015.wufoo.com/forms/clinical-practice-guideline-transitions-of-care/ AMDA. Transitions of Care I the Long-Term Care Continuum Clinical Practice Guideline. 2010.

5. Families • THE GOOD • Appreciative & supportive • Bring in food & gifts • THE (maybe not-so) BAD • Don’t want them as neighbors • Can work with them • THE UGLY • the ones you wake up at 4 AM agitating about

6. Setting the stage-a horror story

7. Weinberg et al. JAMDA 2006; 7(5):315-8. • AM, age 87, admitted to Rehab ctr w PD, ataxia, newly diagnosed in acute hosp. • PMH-AF, CVA, DM • Meds-Sinemet, Glyburide, Coumadin (INR 1.2) • Notes: orient x3 to occasional “forgetfulness” • had several non-injurious falls • Fell, 3 cm laceration, in ER for stiches, • Mental status considered baseline per review of facility notes • INR 2.1 • Bactrim for “UTI” thought to “explain” fall

8. Horror story, continued • Repeat INR done 2 days later (a Friday) 7.2, faxed to attending’s office at 6:30 PM; with no reply, facility presumed no change in orders. • By shift change, Saturday 7 AM “a bit off” • By 11 AM, vomiting, unresponsive • To ER, CT-large intracranial bleed, mass effect • Family contacted, comfort care • Lawsuit settled out of court (7 digits)

9. Lots we could talk about but won’t • Risks/benefits Coumadin • Fall prevention • Handling of INRs • Staff knowledge & notification policies & procedures • The abnormal urine & UTI as whipping boy • (Lack of) Documentation • F-Tag 501 (CMD MIA)

10. For our purposes today, lets focus on • A failed transition of care • How might the family have been engaged? • Why were they not engaged?

11. Institute of Medicine 2008 … Exactly when and how providers need to incorporate the family into the health care process is not yet well understood, but such incorporation is relevant across the full spectrum of institutional, ambulatory, and residential patient-care settings.” Institute of Medicine. Retooling for an aging America: building the health care workforce.

12. “In a fragmented system, where providers change with unsettling regularity, family caregivers are often the only people who have experienced the entire trajectory of their family member’s illness.” … Levine Levine, et al. (2010). Bridging Troubled Waters: Family Caregivers, Transitions & LTC. Health Affairs. 29(1). 116-124.

13. Literature Review • AMDA guideline • Couple of paragraphs • Very general • “Transitions of Care” AND “Families in JAMDA • 7 refs • 1 somewhat useful • Miles RW. The Psychophysics of Transition to Long Term Care. JAMDA 2013: 14(2):85-93 • Analogy between air disasters and bad transitions from acute care to LTC

14. Bad Transitions Contributors Some Solutions Elicit level of understanding, provide information Empathy Coordination • Fatigue • Overwork/time pressure • Missing key information • “Bad weather”-Family affect • Unfamiliarity • MD new to family • Distrust

15. Family Caregiver Experiences in Transitions of Care • Families ill prepared, leads to flawed transitions • Families dissatisfied with TC process • Current transition models cite import of family caregivers but little specific guidance on how to support tem • Lack of interventions to support families • Qualitative study w intervention design in mind • Rich detail of understanding • Limited generalizability • N = 32 family caregivers; focus groups in 4 sites (Bellingham, WA & Denver, CO) • Goal: explore facilitators & challenges faced by family caregivers after loved one’s hospital discharge Coleman & Roman (2015). Family Caregiver Experiences During Transitions Out of the Hospital. Journal of Healthcare Quality. 37(1) pp. 12-21. Coleman EA, Roman SP, Hall KA, Min SJ. Enhancing the care transitions intervention protocol to better address the needs of family caregivers. J Healthcare Qual. 2015; 37(1):2-11.

16. Results: Five Themes • FC roles/contributions to the care of loved one unfold along a spectrum where the readiness, willingness and ability of both parties are often dynamic and unrecognized. • Clinicians rarely assess family’s readiness for caregiver role • Rarely assess family’s perception of readiness for transfer • FCs have unique & potentially incongruent goals from those of the patient • Inherent conflict & guilt • No one asked family member’s goal • FCs feel unprepared & sometimes overwhelmed by post D/C med reconciliation & management • Even though this is most concrete & perhaps best document aspect of TOC • Pharmacist important ally & go-between family & MD re. med changes Coleman & Roman (2015). Family Caregiver Experiences During Transitions Out of the Hospital. Journal of Healthcare Quality. 37(1) pp. 12-21.

17. Themes, continued • Family Caregivers Need Encouragement to Assert Their Role and Identity • At times taken for granted or seen as threat • Family Caregivers Often Assume Responsibility for the Sequencing of Post-hospital Care Plan Tasks and Anticipating Next Steps on Behalf of Their Loved One and the Healthcare Team • Often know more than professionals • Desire as single clinician as “go-to” person

18. Conclusions/Implications for Practice • Family caregivers are often silent and unrecognized partners on the healthcare team. • Play multiple critical, complex changing roles: • identifying medication errors, • anticipating needs, • sequencing & coordination • Completion of complex tasks • Need for systematic assessment/reassessment, coaching, & open communication • Family assessment & support modification to Care Transitions Intervention improved QIs & family satisfaction

19. SMALL GROUP ACTIVITY In small groups, discussyour most memorable experiences with transitions of care (good & bad) …1.) As a Provider2.) As a Family Member

20. Discussion • Best and worst aspects of your experiences? • How did these experiences vary for you in different roles? • What could be changed to make the experience better for you as a provider? For you as a family member? • Examples of materials you use or practice protocols you use that help facilitate TOCs?

21. First Person Narrative Mom-Mom’s Transitions of Care The Good, The Bad, The Ugly

22. Transitions of Care (TOC):Impact on Family Caregivers Systemic Issues

23. . Psychological Issues • Guilt • Anxiety • Anger • Stress • Fear • Hypervigilance • Hopelessness • Impaired sense of control • Loss of Intimacy • Relationship change w/spouse if pt. • Grief & mourning • Decline in coping skills • Compassion fatigue • “Baggage” remorse • Spiritual challenges • Trust issues w/system http://www.apa.org/pi/about/publications/caregivers/index.aspxwww.debate.org

24. Caregiver Depression • 40 -70% of caregivers show clinically significant symptoms of depression • 25-50% meet diagnostic criteria for major depression • Depression & anxiety DO’s can persist/worsen after pt’s placement in LTC. • Depressed caregivers predisposed to physical decline, substance abuse or dependence, chronic disease & increased mortality. https://www.caregiver.org/caregiver-health

25. Social & Contextual Issues • Task demands of supporting loved one at home or in LTC • Financial challenges • Isolation… possible declining support • Competing demands of other personal needs • Cultural differences • Family dynamics • Long distance caregiving • Acrimony re decision-making role • Family secrets revealed • Providers generally unaware, as caregiver is not assessed. http://www.apa.org/pi/about/publications/caregivers/index.aspx

26. Caregiver Assessment Focus • Identify primary caregivers • Improve understanding of caregiver role & abilities needed to carry out required tasks • Evaluate for unresolved problems & potential risks • Identify services available for caregivers and provide appropriate & timely referral for services “Caregiver assessment & intervention should be tailored to circumstances & context.” Adelman, R. et al. Caregiver Burden: A clinical review. JAMA. 311(10):1052-1060

27. Guidelines for Caregiver Assessment • Caregiver’s • Perception of pt’s health & functional status • Values and preferences • Perception of personal health & well-being • Confidence in personal abilities • Perceived challenges and benefits of care giving • Need for additional support • Data used to develop individualized care plan & identify resources Family Caregiver Alliance. (2006).Caregiver assessment: principles, guidelines and strategies for change.

28. Family/Caregiver Critical inTransitions of Care

29. Transitions of Care Are Difficult for All Involved • Patients • Families • Caregivers • Providers Transition of Care challenges = ubiquitous & pervasive Friends dealing with TOC issues & bad experiences Can bring out the worst in everyone!

30. Dealing with People You Can’t Stand… How to Bring Out the Best in People At Their Worst Brinkman & Kirschner (2002)

31. “10 Most Unwanted List” Brinkman & Kirschner (2002) Brinkman & Kirschner (2002). Dealing w/People You Can’t Stand.

32. The Tank Confrontational, pointed & angry ....... The ULTIMATE in aggressive behavior Brinkman & Kirschner (2002). Dealing w/People You Can’t Stand.

33. The Sniper Whether through rude comments, biting sarcasm, or a well-timed eye roll, …making you look FOOLISH is the Sniper’s specialty! Brinkman & Kirschner (2002). Dealing w/People You Can’t Stand. McGraw Hill: New York.

34. The Know-It-All …seldom in doubt, low tolerance for correction and contradiction… …if something goes wrong, will speak authoritatively to blame others.

35. The Grenade …after a brief period of calm, the Grenade explodes into unfocused ranting and raving about things that have nothing to do with the present circumstances

36. The “Think” They-Know-It-All …these people can’t fool all of the people all of the time, but can fool some of the people some of the time…. … all for the sake of getting attention.

37. The Yes Person …people pleasers…say “yes’ without thinking things through…forget prior commitments, over commit until no time for self, then become resentful.

38. The Maybe Person …procrastinates in hope that a better choice will present itself. Usually procrastinates until decision makes itself.

39. The Nothing Person …no verbal or nonverbal feedback...completely uninvested

40. The “No” Person …able to defeat big ideas with a single syllable. Disguised as a mild mannered normal person, the “No” person fights a never ending battle for futility, hopelessness, and despair.

41. The Whiner …feels helpless and overwhelmed by an unfair world. Their standard is perfection, and nothing measures up. Offering solutions makes you bad company, so the whining escalates.

42. “Lens of Understanding” Examines Motives Explains Behaviors Facilitates Communication Minimizes Conflict Brinkman & Kirschner (2002). Dealing w/People You Can’t Stand. How to Bring out Best in People at their Worst. McGraw Hill: NY.

43. Behavioral Continuum Factors influencing behavior: assertiveness & focus Brinkman &Kirchner. Dealing with People You Can’t Stand. McGraw Hill 2002.

44. Four Situational Intents Get task done Get task right Get along w/people Get appreciation from people Behavior Follows Intent Brinkman &Kirchner. Dealing with People You Can’t Stand. McGraw Hill 2002.

45. Behavioral Response to Intent Threat Intent: Get it right Intent: Get it done PERFECTIONISTIC CONTROLLING APPROVAL SEEKING ATTENTION GETTING Intent: Get along Intent: Get appreciated Brinkman &Kirchner. Dealing with People You Can’t Stand. McGraw Hill 2002.

50. Brinkman & Kirschner 2002