Abstract
Islam is the fastest-growing religion across the world and in the United States. Adherents of Islam are known as Muslims. Globally, Muslims comprise the second largest religious group with 1.8 billion people, or 24% of the world's population, and range in racial and ethnic diversity.1 As this population continues to grow, palliative care clinicians will invariably care for a Muslim patient therefore making it important to have a basic understanding of values, traditions, and beliefs held by them. This article outlines 10 basic principles held by many Muslim patients and their families that can allow for palliative care to be delivered in a culturally inclusive way. This article should serve as a point of initiation for further exploration of their needs as it is not a comprehensive guide.
Keywords: Islam, Muslim, palliative care, Qur'an, spirituality
Introduction
Islam is the fastest-growing religion across the globe and in the United States. Adherents of Islam, termed “Muslims” comprise the second largest religious group with 1.8 billion people, or 24% of the world's population, and range in racial and ethnic diversity from countries such as Nigeria, Egypt, Uzbekistan, Indonesia, and Pakistan to name a few. Currently 1.1% (2.15 million) of the U.S. population is Muslim of which 58% are immigrants. This number is projected to double by the year 2050 and is projected to be 2.1% by the year 2050.1 Invariably, palliative care clinicians, will be charged with the care of Muslim patients during their careers. Cultural humility, a cornerstone of person-centered palliative care delivery, stipulates an openness to foster respectful and cooperative relationships that accommodate individual unique cultural and religious needs.2
The core values of Islam are dictated by the Qur'an (holy book), the five pillars, and six principles and Muslims often turn to these as primary guides by which to live, particularly when facing challenges such as illness and death. Integral to Islam are the five pillars (1) Shahada (declaration of faith), (2) Salah (prayers), (3) Zakat (alms), (4) Fasting, and (5) Hajj (pilgrimage to Mecca). In addition, many ascribe to the six articles of faith (1) Belief in the one God (Allah); (2) Belief in existence of angels; (3) Acceptance of the prophets; (4) Acknowledge the predestination of God; (5) Belief in the Day of Judgment; and (6) Belief in the books God authored, including the Qur'an, the Gospel, the Torah, and Psalms.
Although Muslims comprise nearly one quarter of the world's population, there exists a dearth of fundamental knowledge about Islam among health care workers, often hampering the delivery of culturally sensitive care.3 Out of the fear of discrimination, Muslim patients may not assert their needs to health care providers, including those specific to end-of-life care. Muslims also may feel powerless to express their needs due to the rigidity of medical services and limitations in the ability to provide culturally sensitive care such as when medical appointments conflict with prayer times or when hospital meals do not adhere to dietary restrictions.4,5 Varying degrees of education, English proficiency, and assimilation into the dominant culture pose specific challenges to health care providers, including the need to meet the patient and family at appropriate points for effective exchange of information to better meet individual needs.4,6
The intent of this article is to serve as a basic guide for palliative care providers to provide culturally sensitive and informed care to their Muslim patients. A basic framework to understand the needs of the Muslim patient will be outlined; however, we do not intend for this to be a comprehensive guide that addresses every subcontext of the care of the Muslim patient. Although the basic tenets of Islam are the same, the practice of Islam is as unique as the people who are its adherents. This article should serve as a point of initiation for further exploration of their needs.
Tip 1: The Five Daily Prayers and Recitation of Qur'an Are Central to How Many Muslims Make Meaning and Cope with Life-Limiting Illness
Performing the five daily prayers and listening to the recitation of the Holy Qur'an are central to the way Muslims gain strength and clarity when diagnosed with a life-threatening illness.7,8 Prayers are used to atone for one's sins as well as lead one on a righteous path, which will help attain Jannah (Heaven).
A Muslim patient's commitment to their faith may pose challenges to providing medical care when prayer times coincide with nursing duties, blood draws, or clinician visits. Medications and/or interventions that lead to sedation may be refused to avoid interference with the patient's ability to pray with a clear mind.7,9 Some may refuse psychiatric medications or antidepressants since some Muslims believe prayer alone can address these symptoms.7 This is not to say that pain medication will never be used by Muslim patients, since Islam encourages patience but not suffering.9 This point will be discussed more in a later tip.
Flexibility and cultural humility should be utilized when engaging in shared decision making. If patients are refusing interventions, approach this challenge with curiosity and explore what barriers exist, instead of assuming noncompliance. Flexibility can be practiced by retiming of nontime-sensitive interventions. If it is a time-sensitive intervention, simply explain the urgency to patients and families, often times will result in patients understanding and cooperation. In addition, when a patient is admitted to the hospital, be prepared to provide means to observe their faith by offering a prayer rug, a way to perform ablution (cleansing), and a Qur'an. Prayers are performed by facing east toward Mecca, therefore if they are bed bound, face the bed toward the east.7,10
Tip 2: Muslims May Want to Involve Religious Leaders or An Imam When Faced with Illness
Illness is a trying time for patients and families physically, mentally, and spiritually. The Qur'an states that one will be tested with fear, famine, and loss of life and property, yet there are glad tidings for those who patiently endure and remember at times of difficulty that we belong to God and to Him is our return. Based on this, illness, grief, and loss are expected, yet the Muslim patient may still require guidance when facing illness and life-altering decisions. Muslim patients may seek spiritual advice from religious leaders such as scholars (those who study Islam but generally do not lead congregation/community) or imams (congregation/community leaders).
Imams and scholars may be a source of comfort and guidance for the Muslim patient when navigating life events such as the birth of a child, weddings, or the end of life. Particularly during the course of illness, questions regarding fate and the afterlife arise and lead to the exploration of religious pathways to the best fate (Heaven). For such questions and instances, a patient may request an imam to be present to offer spiritual guidance.11,12
The clinical care team can help facilitate connections with local Muslim institutions and Imams through pastoral care departments. It may be expedient to have a designated imam available for a given hospital. The local Imams and Muslim institutions can provide local resources for families with concerns as varied as halal food to funeral arrangements. Utilizing Imams and religious leaders at the request of families can help clinical teams and health care institutions provide culturally and religiously sensitive care.
Tip 3: Clinicians Should Recognize That Disclosure of Information, Informed Consent, and Medical Decision Making May Differ from Western Views in the Muslim Family
During difficult times, Muslims may utilize various sources of emotional support, including family, friends, or religious figures. Delivery of, the audience for, and the interpretation of medical information is determined by each individual family's cultural dynamic and religious beliefs.13
Clinicians may experience diverse communication methods from Muslim patients who prefer full disclosure, no disclosure, or prefer to receive information through family. Intersecting with religious preferences may also be specific culture and traditions reflecting community norms in the United States or customs from familial origins. Thus, some preferences and goals are very likely to differ among Muslims from Azerbaijan versus those from Zimbabwe. Families may wish to shield the patient from receiving bad news about a diagnosis and instead present information in a more culturally acceptable manner. Some cultures may prefer nondisclosure for preservation of hope. Additionally, male family members may be the representative for the family due to male–female synergistic relationships, where the male is seen as the protector and provider who takes the burden of bad news to spare his family.12 Filial piety may be observed in cultures where adult children take responsibility for their parents and wish to spare them from prognostic information to care for their parents as their parents cared for them.12
Communication methods may be different compared with Western traditions and may present ethical dilemmas for the practitioner. It is important to realize that honoring a family's traditions and values does not diminish one's own ethical standards. Encourage families to express their concerns regarding full disclosure and ask patients how much information they would like, using an interpreter when needed. Interpreters who are familiar with cultural norms can often function as excellent resources for navigating culturally nuanced interactions. This method of culturally humble communication will increase trust and therapeutic alliances.14
Examples of questions to assess communication and decision-making preferences we have found helpful are: “How do you and your family prefer to make important decisions? Who should be involved? What information should we share with who? Are there any limitations?”
How medical information is delivered, to whom it is delivered, and how it is interpreted is determined by each individual family's cultural dynamic in addition to religious beliefs.
Tip 4: Fasting During the Holy Month of Ramadan and Other Dietary Restrictions Should Be Explored by Clinicians as It Can Impact Medical Care
Muslims adhere to Islamic dietary laws that prohibit the consumption of pork, alcohol, blood, carrion, and meat from animals that are not humanely raised and slaughtered according to Islamic principles.15 Many Muslims eat meat that is blessed while being slaughtered in a permissible way, (Halal), and is therefore permissible to eat. Alcohol is prohibited because it may prevent Muslims from praying and affects their judgment.16
A Muslim patient may question or refuse the use of medications with porcine-based products, including medical products, such as surgical implants.17,18 Consider alternative forms of medication, such as liquid antibiotics, which could provide the same therapeutic benefit without causing psychological discomfort.7 If no effective alternative is available, open communication is necessary for the patients to make informed decisions. Islam emphasizes that if the designated medical intervention is intended to save a life, then it may override this rule.
Fasting during the holy month of Ramadan is incumbent on all healthy Muslims who have reached puberty. Those who are ill, pregnant, traveling, or elderly are not required to fast; however, many may still want to fast against medical advice.19 This adherence to faith can inadvertently lead to complications when patients are on time-sensitive medications or have illnesses such as diabetes. As clinicians, we can provide education and more importantly support. Retiming insulin and/or altering doses while monitoring them closely will encourage a therapeutic alliance and allow these patients to achieve their spiritual goals during these trying times.
Tip 5: Respecting the Modesty and Privacy Upheld by the Muslim Patient Is Central to Culturally Sensitive Care
Muslims view their bodies as a sacred trust from God that requires upkeep and safeguarding from ills. Thus, Muslims are required to dress modestly and cover certain parts of their bodies outside the confines of the home (family). Islamic beliefs often inform practices of modesty and dress, violations of which can often lead to psychological tensions involving shame, guilt, or even disruptions in health care.20 Although modesty is often associated with female patients, men may also hesitate to feel the touch or gaze of a practitioner of the opposite sex. Therefore, Muslim patients of either gender may prefer a same-gender health care provider to perform examinations requiring exposure of covered parts of the body.20
These types of interactions may be handled with sensitivity by asking questions such as “I would like to honor your preferences and be sure that you are comfortable with who conducts your physical exam. Would that be someone of the same gender or any qualified practitioner?” This approach may prompt open communication. In cases where a female practitioner is not available, asking a female member of the team to join may help assuage any discomfort. Respecting the modesty and privacy upheld by the Muslim patient is central to culturally sensitive care and may include making accommodations for female patients and/or caregivers such as allotting ample time after knocking for female patients/caregivers to cover (if they choose to) before entering. In addition, be sure to expose only parts of the body that are required for the examination.
Tip 6: Advance Care Planning Is Acceptable But Not Fully Embraced
There are a few concepts to keep in mind when preparing to discuss advance care planning with Muslim patients and families
Many Muslims believe in the Islamic principle of tawakkul, “placing one's entire trust in the fact that whatever happens does so according to God's plan.” Illness is viewed as part of a divine plan and medical care as the conduit for this plan.20 Muslims are encouraged to rely on God's plan while simultaneously preparing for eventualities.21 Therefore, advance care planning such as living wills and advance directives may be difficult subjects to discuss and slow to be accepted, however, they are considered permissible by a majority of Muslim religious and medical bodies such as the Organization of the Islamic Conference and the Islamic Medical Association of North America.22,23
The Islamic principle of taklif, an individual's theological accountability in front of God for all deeds, frames how quality of life and advance care planning are discussed.24 It might be helpful to initiate a discussion with patients and families about how an individual with life limiting may have diminished capacity to fulfill all Islamic obligations as they previously had. Treatment without hope for cure and with severe side effects that impair one's ability to complete religious obligations render such treatments as not obligatory to the Muslim patient.22,23
Finally, the Islamic principle of human dignity should be included in discussions regarding end-of-life care and advance care planning.11 These concepts can be helpful for the clinician when discussing advance care planning for Muslim patients.
Tip 7: Muslim Patients May Hesitate to Utilize Analgesic Regimens and Palliative Sedation
As described earlier, the five pillars contribute to the fundamental belief system of adherents to Islam. When faced with one's mortality, the pillar describing five daily prayers is of even greater importance as it provides a means for the Muslim to repent when approaching end of life. It has been written in the holy Qur'an that using substances that are considered intoxicating are barriers for a clear mind to worship. The concept of “sabr,” which means patient perseverance, should be encouraged for someone who perceives she is being tested through life's tribulations such as life-limiting illness and pain.24,25
Table 1.
Common Medications with Pork/Gelatin or Alcohol
As a clinician you may come across a Muslim patient who refuse opioids or benzodiazepines, even when in extreme pain and discomfort. At first glance this may appear as noncompliance, however understanding that opioids fall under the category of intoxicants to their patient may help clarify matters. If further explored by inquiring about fears or worries, the patient may reveal that he fears not being able to perform the five daily required prayers due to oversedation, or not being able to declare the first pillar known as “Shahada.”
If counseled appropriately the patient will more than likely be willing since these substances are acceptable if there is no alternative available.26 Comfort and pain management are permissible in Islam and should be discussed with the Muslim patient or family.9 Reassure patients that medications can be titrated to provide maximum comfort and minimize sedation.
Tip 8: Considerations When Exploring Redirection of Care/Physician-Assisted Death/Life Prolongation
The Qur'an states, “whoever takes a life…it will be as if they killed all of humanity, and whoever saves a life, it will be as if they saved all of humanity.” Life is a sacred trust from God and actions that betray this trust are forbidden. The Islamic principles of inviolability and human dignity are important in discussions regarding end-of-life care.11 Medical treatment is permissible and encouraged although situations exist in which it may be withheld or withdrawn.
Decisions affecting end-of-life care and withdrawal of life-sustaining measures are influenced by the patient's and family's cultural and religious beliefs. Muslim patients may seek counsel from a religious scholar regarding permissibility of withdrawing life-sustaining treatments and relief of pain and suffering.27 While there are diverse opinions, the majority of scholars and Islamic juridical bodies have stated that withdrawing or withholding life-sustaining measures can be permissible with specific criteria. These measures can include ventilatory support, artificial nutrition, intravenous fluids, cardiopulmonary resuscitation, antibiotics, and pressor support.
While a particular treatment can be withheld if it causes more pain and suffering than therapeutic benefit, physician-assisted death and euthanasia are forbidden under the Islamic principle of the sanctity of life and viewed as the active taking of a life. For example, clinicians may consider withdrawing ventilatory support from a patient with severe anoxic brain injury with little hope for meaningful recovery after cardiac arrest to provide symptomatic relief, and this is permissible.
Tip 9: Post-Mortem Care for the Muslim Patient
Islamic law dictates how the body will be handled, cleansed, and prepared for burial. Cremation and embalming are generally not acceptable practices. Muslims believe that the body should be treated in death with respect, as it is treated in life. They also believe in the mercy of a quick burial. Thus, the swift release of the body helps expedite the funeral process. As a ritual, the body will be washed and wrapped in a white sheet, and the deceased face will be pointed toward Mecca.25
Organ donation is permissible in Islam as states Qur'an 5: 32 “If anyone saved a life, it would be as if he saved the life of the whole people.” In addition, the Fiqh Council of North America, which is a body of recognized scholars in Islam, are experts who interpret Islamic law within North American mainstream law. However, as Muslim families are not monolithic, regional and cultural differences within the Islamic world may contribute to some hesitancy to donate organs. It might also be helpful to initiate a discussion about when and how organ donation would transpire.
Muslims view death as God's will, and acceptance of this will may be accompanied by prayer, reading of the Qur'an, meditation, and remaining at the deceased's bedside for extended periods of time.29
When taking care of a Muslim patient practicing culturally sensitive end-of-life care requires acknowledging, respecting, and encouraging the spiritual and cultural expression of patients and their families. Muslim patients may hold differing perspectives on what constitutes a “good death,” and as such, open communication between the palliative care team and the families is crucial to providing optimal patient and family-centered care.30
When caring for international patients, you may have to honor their request for final burial to be in their native country. Exploring the feasibility and preparing travel documents ahead of time will be crucial. At times when they are aware that timely burial within the 24-hour prescribed time period may not be feasible, they may choose to forgo this request. There may be local Imams who can help to execute this preference.
Tip 10: Palliative Care Considerations in the Muslim Child
Although Muslims hail from many different cultural backgrounds, the role of the child in the Muslim family may overlap in many of these various cultural traditions. Children are often shielded from bad news and not included in decision making.31 A father, assuming he is the “head” of the Muslim family, may expect to receive his child's prognosis.31 Fathers may want to protect the mother and/or child from the burden of bad news and this decision may affect the pediatric patient.32
Despite many cultures shielding children from full disclosure of their diagnosis or prognosis, children are nevertheless encouraged to accept death generally as a fact of life and not shielded from the concept of one's mortality. The act of visiting an ill person is referred to as a “Sunnah,” or a practice of the prophet Muhammed,12 which Muslims often follow. This principle has been shown to be particularly beneficial for the pediatric patient population, as the parents were shown to have better outcomes when their children were cared for in this environment.12 Although children are encouraged to visit the sick, many families only allow their male children to attend funerals.25 Since the terminally ill patient expect family and friends to visit and pray for them, having these patients feeling comforted in a nonclinical setting has been proven to have more beneficial outcomes.12
Of note, children should not be involved in interpreting the conversation between the family and the provider as it leads to a negative impact such as giving up school or work.12
Conclusion
Muslims are observers of the, Islam. The unique values and beliefs that are held by the Muslim patient influences how medical care, advanced care planning, and post-mortem care will be delivered. Having a basic understanding of the needs of the Muslim patient will help the palliative care clinician develop a culturally humble approach to shared decision making and fostering trust that leads to open communication. This in turn leads to excellent care of the patient that integrates the values, beliefs, and goals of the patient with palliative care principles. Cultural differences between clinicians and patients should not be deemed barriers but should be seen as opportunities for learning and individualizing treatment.
Author Disclosure Statement
No competing financial interests exist.
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