Muslim patients in the U.S. confronting challenges regarding end-of-life and palliative care: the experiences and roles of hospital chaplains

Abstract

Introduction Hospital chaplains aid patients confronting challenges related to palliative and end-of-life care, but relatively little is known about how chaplains view and respond to such needs among Muslim patients, and how well. Methods Telephone qualitative interviews of ~ 1 h each were conducted with 23 chaplains and analyzed. Results Both Muslim and non-Muslim chaplains raised issues concerning Islam among chaplains, doctors and patients, particularly challenges and misunderstandings between non-Muslim providers and Muslim patients, especially at the end-of-life, often due to a lack of knowledge of Islam, and misunderstanding and differences in perspectives. Due to broader societal Islamophobia, Muslim patients may fear or face discrimination, and thus not disclose their religion in the hospital. Confusion can arise among Muslim patients and families about what their faith permits regarding end-of-life care and pain management, and how to interpret and apply their religious beliefs in hospitals. Muslims hail from different countries, but providers may not fully grasp how these patients’ cultural practices may also vary. Chaplains can help address these challenges, playing key roles in mediating tensions and working to counteract Muslim patients’ fears, and express support. Yet many Muslim immigrants don’t know what “chaplaincy” is and/or prefer a chaplain of their own faith. Muslim chaplains can play vital roles, having expertise that can heighten trust, and educating non-Muslim colleagues, providing in-depth understanding of Islam (e.g., highlighting how Islam is related to Judaism and Christianity) and correcting misconceptions among colleagues. Hospitals without a Muslim chaplain can draw on local community imams. Conclusions These data highlight how mutual sets of misunderstandings, especially concerning patients’ and families’ decisions about end-of-life care and pain management, can emerge among Muslim patients and non-Muslim staff that chaplains can help mediate. Non-Muslim chaplains and providers should seek to learn more about Islam. Muslim patients and families may also benefit from enhanced education and awareness of chaplains’ availability and scope, and of pain management and end-of-life options. These data thus have several critical implications for future practice, education, and research.

“Why me?”: Qualitative research on why patients ask, what they mean, how they answer and what factors and processes are involved

“…In several in-depth qualitative research interview studies the author has conducted over several years on a variety of disorders, questions of “why me?” have often arisen. Other issues that emerged in these interviews have been reported elsewhere ( Klitzman, 1997 , 2008 ; 2012 , 2019 ; Klitzman et al, 2023 ). However, in these interviews, issues regarding “why me?” also frequently arose spontaneously, and data from these studies are thus brought together here for the first time to analyze in systematic ways how patients’ use the phrase “why me?“, what meanings it may have and what phenomena may be involved.…”

“…This article draws on several qualitative research studies ( Klitzman, 1997 , 2008 ; 2012 , 2019 ; Klitzman et al, 2023 ) of how patients, including physicians when they develop serious disease, cope with various conditions, including HIV, diagnoses associated with genetic testing (e.g., breast cancer and Huntington’s disease [HD]) and infertility/in vitro fertilization (IVF), and hospital chaplains, supplemented by additional conversations with patients and providers. Methodological and other data from these studies have been reported elsewhere ( Klitzman, 1997 , 2008 ; 2012 , 2019 ; Klitzman et al, 2023 ). In brief, these studies explored participants’ views, experiences, challenges and decisions concerning the medical issues confronted, including ways of coping, to obtain “thick descriptions” ( Geertz, 1973 ).…”

The muslim patient and medical treatments based on porcine ingredients

“…Providing information about the available alternative therapies is part of informed consent and constitutes part of the respect for the patient’s autonomy. Recognition of the religious beliefs of the Muslim patient is a very important factor in the interaction between physician and patient to obtain informed consent for medical treatment [ 5 , 39 ]. Failure to respect religious sensitivities regarding the use of biological products such as materials from porcine sources can have serious consequences.…”

“…When no substitute can be used, patients, family members, guardians, and even religious leaders may be involved in the decision-making process [ 7 , 8 ]. It is highly recommended for hospitals to engage their local Muslim communities to create general guidelines and policies for that hospital so that those Muslims who do not agree with those guidelines or policies can take their patients to a different hospital if possible, and thus make timely and informed decisions [ 37 – 39 ].…”

“…There may even be differences of opinion on the matter between the patient and their family members. In cases where the patient is a child, then their parents decide for them, and in cases of disagreement between the mother and the father, they may turn to the Muslim hospital chaplain or the imam [ 37 – 39 ].…”