Susannah Plocher, LGSW, MPAff Anne Kelemen, LICSW, ACHP-SW March 2018 “Is it because you think we can’t pay?” When Culture and Communication Clash at End of Life Susannah Plocher, LGSW, MPAff Anne Kelemen, LICSW, ACHP-SW March 2018

Objectives To clarify the roles of social work and palliative care in multidisciplinary, critical care settings, specifically in communication with families around end of life. To explore the cultural concepts of filial duty as they apply to medical decision-making and end of life. To identify opportunities for social workers to advocate for better communication in a multidisciplinary care setting.

Non-Disclosures

Case Review Patient A 68 year old female, born in Nigeria, lived in US for many years, children US-born. Family: Large, geographically diverse, many medically trained, from a royal Nigerian line. Diagnosis: Stage IV endometrial cancer, admitted with severe abdominal pain. Mental Status: Not alert or oriented during hospitalization.

Case Review Patient B 55 year old female, lives in Nigeria, visiting adult children in US. Family: Daughter/designee medically trained and hospital employee. Diagnosis: Abscess and bleeding following prior surgery abroad. Mental Status: Waxing and waning throughout hospitalization.

Case Review Patient C 83 year old female, born in Nigeria, currently living in US. Family: Matriarch of large, geographically diverse family, many medically trained. American-born grandchildren very involved in care. Diagnosis: Jaundice and suspicion for malignancy. Mental Status: Not alert or oriented during hospitalization.

Standard of Practice? Scheduling family meetings. Respecting families’ professional backgrounds. Engaging support services – social work, chaplaincy – to support whole family. Involving palliative care in cases of chronic illness or poor prognosis.

Where we stumbled Cultural differences in structure and decision-making Assumptions of American nuclear vs. Nigerian disseminated Impacts on decisional hierarchy

Stumbling Block 2 Filial duty Central to decision-making Maximum medical intervention as proxy for duty to elders Shared cultural value: “to ensure their parents’ health is well cared for and their rite of passage is with ‘peace and dignity’” (New America Media) Central to response Limits of US medicine, in which great hopes had been placed, undermining ability to fulfill duty Informed dynamic of “us vs. them” (not understanding, sharing their values)

Stumbling Block 3 Family authority Perceived need for legitimization Repeated references to medical backgrounds, royal lineage, wealth Use of deference to build rapport At first to show respect, allow for degree of family authority Ultimately used by family to legitimize disagreement with team medical team discounted their knowledge, compounding feelings that team discounted their wishes/value as people. 3 common issues with “physician-patients”: boundaries, assumptions, managing care (Domeyer-Klenske and Rosenbaum)

Feelings of failure Patient A Transferred to local hospital with family stating their hopes for complete recovery. Died 9 days later. Patient B Died at hospital. Family called police at time of death, to report murder by medical staff. Patient C Transferred to local hospital. Discharged home 3 months later, requiring total care.

How can SW impact “culture” change? How do we structure family meetings to be more culturally informed? Tone, language, setting? (Feser) How can we better respond to decision making processes within family units? Expectations of who “should” be there, who “should” be in charge.

How can SW impact “culture” change? How do we show respect for medical backgrounds while maintaining boundaries? Ignore vs. Incorporate vs. Defer (Domeyer-Klenske and Rosenbaum) What supports can we involve earlier on, to support decision making and engagement? Palliative care at time of admission vs. end of life Use of social work to outline with family preferred family engagement (Feser) Ensure completion of advance care planning documents (e.g. MOLST) if not complete (New America Media) Standardize family meeting schedule

References Domeyer-Klenske, A., & Rosenbaum, M. (2012). When doctor becomes patient: challenges and strategies in caring for physician-patients. Journal of Family Medicine , 44(7): 471-477. Retrieved December 27, 2017, from https://www.stfm.org/fmhub/fm2012/July/Amy471.pdf. Feser, L. (2013). Cultural competence and cross cultural care at end of life. Retrieved December 26, 2017, from http://www.virtualhospice.ca/Assets/loreen%20feser%20%20culture_20081127165937.pdf. Growing Awareness of End-of-Life Care among Nigerian Immigrants. (2015, January 06). New America Media . Retrieved December 26, 2017, from http://mshale.com/2015/01/06/growing-awareness-end-of-life-care-nigerian-immigrants/.