1. When Healthcare Professionals Become Family Caregivers: Ambivalence on the Team Barry J. Jacobs, PsyD, Crozer-Keystone Family Medicine Residency Program Margaret Cotroneo, PhD, APRN-BC, University of Pennsylvania School of Nursing David Seaburn, PhD, LMFT, Private Practice Collaborative Family Healthcare Association 13 th Annual Conference October 27-29, 2011 Philadelphia, Pennsylvania U.S.A. Session #E4 October 29, 2011 10:30 AM

2. Faculty Disclosure We have not had any relevant financial relationships during the past 12 months.

3. Need/Practice Gap & Supporting Resources What is the scientific basis for this talk? --Review of literature on family caregiving and the challenges of healthcare professionals who are family caregivers --Personal experiences of healthcare professionals and educators who have dealt with the collaborative healthcare teams caring for their aging parents

4. Objectives --Describe common experiences of healthcare professionals who become family caregivers in dealing with their own loved ones’ collaborative healthcare teams --Describe the sources of treating professionals’ ambivalence toward professionals/caregivers --Outline principles for guiding relationships between professionals/caregivers and treating professionals to optimize patients’ well-being --Suggest effective roles generally for family caregivers to play on the collaborative healthcare team

5. Expected Outcome What do you plan for this talk to change in the participant’s practice? --Learn guiding principles for working collaboratively with family caregivers who happen to be healthcare professionals themselves --Increase awareness of the challenges for healthcare professionals when caring for their own family members in the context of collaborative care

6. Learning Assessment A learning assessment is required for CE credit. Attention Presenters: Please incorporate audience interaction through a brief Question & Answer period during or at the conclusion of your presentation. This component MUST be done in lieu of a written pre- or post-test based on your learning objectives to satisfy accreditation requirements.

7. TODAY’S TALK Introduction: the burgeoning phenomenon of family caregiving; the challenges when the family caregiver is a healthcare professional Personal experiences Guiding principles for caregiver-professionals: agency and communion, advocacy, care coordination, colliding expectations Guiding principles for treating professionals Discussion

8. INTRODUCTION In part because of our aging population, more Americans have chronic, disabling illnesses for which they need ongoing care from family members 65 million Americans provide some care during course of a given year; about 25 million regularly (i.e., daily)—numbers are growing Family caregivers of necessity interact with collaborative healthcare teams as part of tripartite model—patient-family caregiver-treating professionals Efficacy of that three-way partnership depends on trust, communication, common purpose

9. INTRO (cont.) The tripartite model becomes more complex and challenging when the family caregiver is a healthcare professional (caregiver-professional) Can affect the level of trust among the partners positively or negatively Can further communication or increase wariness and result in more guarded communication Frequently ambivalent relationship between caregiver-professional and treating professional; fear of criticism, ill-defined limits of advocacy

10. INTRO (cont.) American College of Physicians 2009 Position Paper on ethical guidelines for physician in working with patients and family caregivers: --Treating professional should draw boundaries so that caregiver-professional is expected to function as a family member, not a professional, in relation to the patient’s care --Caregiver-professional can serve as knowledgeable interpreter among patient, other family members and treating professionals

11. AGENCY & COMMUNION Agency Communion Connection Belonging Caring Autonomy Influence Self-determination

12. AGENCY/COMMUNION: A CONTINUUM Ag ComOverinvolved Disengaged Reactive Passive

13. AGENCY INTERRUPTED Physical functioning Future ‘Get better’ Identity Role loss Meaning

14. COMMUNION INTERRUPTED Communication Labile affect Conflict Intimacy Identity Future Integrating the healthcare team

15. REGARDING AGENCY Identify reasonable areas of influence. Specify a family member who will have primary responsibility for interacting with the healthcare team. Identify care responsibilities that can be assumed by family members.

16. REGARDING COMMUNION Arrange meetings between key family members and healthcare team representatives. Assess and address care needs of the primary caregiver and others. Maintain uniform/clear communication about diagnosis, prognosis and treatment planning.

17. TREATING PROFESSIONALS’ GUIDELINES Recognize own reactions/discomfort (e.g., wariness, defensiveness, withdrawal) when working with a family caregiver who is a healthcare professional Do unto others…: Accord respect for caregiver-professional’s special knowledge of illness, patient, family, home environment, etc.; communicate openly about details of treatment and prognosis, if patient allows it

18. TREATING PROS (cont.) Define partnership with limits: Encourage caregiver- professional to facilitate communication between treating professionals and patient/other family members but don’t give caregiver/professional right to dictate treatment plan Remember that no family member—not even one with professional credentials—has objective view of patient’s needs Don’t hesitate to offer caregiver-professional same support services you would any other family caregiver

19. Caregiver Expectations “Candid caring” in communication Attention to safety and environment Caring competence Coordinating care at “home” Trust Knowledge of patient/family expectations Ease of access to professionals Troubleshooting A roadmap

20. Family Systems Considerations Expectations: The family legacy of care giving Advocacy: Applying the principles of multi- directed partiality Coordination: Prevention of harmful consequences

21. Process of Multi-directed Partiality as a Tool in Coordination of Care

23. Session Evaluation Please complete and return the evaluation form to the classroom monitor before leaving this session. Thank you!