End-of-Life Medical Decision-Making in the Muslim American Community: Understanding Beliefs and Practices around Disclosure of Illness, Surrogate Identification and Use of Advance Directives
Asma Mobin-Uddin, MD, MA, FAAP, Ramona Olvera, and Anneliese Sinclair, The Ohio State University College of Medicine, Columbus, OH; Mehrunnisa Khanzada and Nooralhuda Alhashim, The Ohio State University, Columbus, OH; Janet E. Childerhose, The Ohio State University College of Medicine, Columbus, OH; and Muhammad Afzal and Mahmoud Abdel-Rasoul, The Ohio State University Wexner Medical Center, Columbus, OH
Uncertainty around end-of-life decision-making can cause significant moral distress, conflict, and grief among families, patients and medical teams and can extend intensive care hospitalizations. Studies have shown that advance care planning improves quality of care and patient outcomes and increases the likelihood that patients’ preferences about medical care will be upheld. However, racial and ethnic differences and disparities are well documented and can result in barriers to effective advance care planning. Cultural and religious factors can play an important role in the acceptance of and approach to advance care planning in diverse communities. The Muslim community can face challenges in this area due to difficulty bridging gaps with medical teams related to cultural and religious beliefs as well as language barriers.
The study team is engaged in a multiphase project that aims to step into the gaps and address these challenges through assessment, outreach, education, and interventions. The initial part of the project was a medical chart review completed at a large US academic medical center that revealed that Muslims are one of the least likely religious groups, including those identified as atheist, agnostic or no religious preference, to have an advance directive in their electronic health record.
The current paper discusses the findings of the second phase of this project: a qualitative research study designed to identify and understand the attitudes, beliefs, and practices of members of the Muslim American community related to end-of-life medical decision-making. The specific aims of the study were to solicit from participants sources of trusted information for end-of-life medical decision-making, to identify preferences for disclosure of serious medical illness for self and family members, to solicit preferences for surrogate decision-makers, to understand the role of religion in end-of-life medical decision-making, and to better understand beliefs about advance care planning in this community, including identifying barriers and determining ways to improve engagement. Over 50 Muslims in central Ohio participated in the mosque-based semi-structured interviews in their preferred language, choosing from the options of English, Arabic, Urdu or Somali.
The presenter will discuss the study findings and how these will be used to develop effective, religiously and culturally sensitive educational interventions and tools to increase rates of end-of-life planning in the Muslim American community. The presenter is a Muslim physician and clinical ethics consultant who has decades of experience in clinical practice and community engagement.
The study team is engaged in a multiphase project that aims to step into the gaps and address these challenges through assessment, outreach, education, and interventions. The initial part of the project was a medical chart review completed at a large US academic medical center that revealed that Muslims are one of the least likely religious groups, including those identified as atheist, agnostic or no religious preference, to have an advance directive in their electronic health record.
The current paper discusses the findings of the second phase of this project: a qualitative research study designed to identify and understand the attitudes, beliefs, and practices of members of the Muslim American community related to end-of-life medical decision-making. The specific aims of the study were to solicit from participants sources of trusted information for end-of-life medical decision-making, to identify preferences for disclosure of serious medical illness for self and family members, to solicit preferences for surrogate decision-makers, to understand the role of religion in end-of-life medical decision-making, and to better understand beliefs about advance care planning in this community, including identifying barriers and determining ways to improve engagement. Over 50 Muslims in central Ohio participated in the mosque-based semi-structured interviews in their preferred language, choosing from the options of English, Arabic, Urdu or Somali.
The presenter will discuss the study findings and how these will be used to develop effective, religiously and culturally sensitive educational interventions and tools to increase rates of end-of-life planning in the Muslim American community. The presenter is a Muslim physician and clinical ethics consultant who has decades of experience in clinical practice and community engagement.