key: cord-0887548-h7sk7gk8
authors: Isgandarova, Nazila
title: “When Someone is Dying, We Prefer….”: COVID‐19 and The Challenges to Muslim Health Care Choices
date: 2022-02-26
journal: Muslim World (Hartford)
DOI: 10.1111/muwo.12412
sha: dbc26fa49c01d8e8521bed63c3577a222feb9907
doc_id: 887548
cord_uid: h7sk7gk8

nan

T he COVID-19 coronovirus has challenged health care providers and families, and with them, many faith communities, in their response to end-of-life care issues, especially end-of-life choices informed by their traditional social, religious, and spiritual values. The most common challenges arise from the allocation of scarce health care resources, and the lack of quality of life for the sick and dying, due to the constraints imposed by health care facilities. Many Muslim families around the world face difficulties and limitations in taking care of and comforting the dying, and in completing the death and funeral rites as prescribed and informed by the Islamic faith. For example, in 2019, an 86-year-old Muslim female patient died due to complications related to COVID-19 in Toronto, Ontario. The patient's family experienced trauma not only from the death of their loved one, but also due to the challenges of getting the body released from the hospital's morgue and arranging the burial service within 24 hours, a requirement of their religious practices. In addition, they felt extreme guilt for not attending their mothers' last moments, due to the hospital's visitation restrictions during COVID-19. They also found out that many funeral homes were not operating at that time. Although ultimately they were able to arrange a burial and funeral service with the aid of the mosque, they still grieve for not saying the final prayers and reading the Qur'an when their mother was dying in the hospital.

There are other traumatic experiences that have affected Muslim families in other parts of the world. For example, when Fathima Rinoza, a 44-year-old mother of three from Sri Lanka's minority Muslim population, passed away due to COVID-19, the Colombo hospital in the capital of Sri-Lanka refused to return her body to the family. Her adult son was forced "to sign papers authorizing her cremation… even though under Muslim law, cremation is considered a violation of the human body." 1 Fathima, of course, was not the only Muslim cremated due to COVID-19. This paper does not cover all end-of-life care issues that have developed due to COVID-19. In the context of the concerns mentioned above, this paper will first examine certain rules of al-janaʾiz (lit. funerals or funerary practices), particularly taklif (a legal charge or obligation) and ahliyya (legal competence), and the concepts used to understand them, such as 'aql (intellect) , 'ilm (knowledge), and hurriyat (freedom). Then, I will discuss the partnership with other faith communities to support the sick and work together to respond to this crisis. Finally, I will outline a general framework for collaboration between Muslim community organizations, Muslim families, and healthcare providers that can be used to guide healthcare providers to comfort and empower the sick, and to heal, sustain, guide, and reconcile the affected through appropriate religion-sensitive ethical decisions. I will reflect on the degree of collaboration between healthcare providers when discussing these issues with Muslim families and patients.

Muslims accept the reality of death as the end element of the temporary nature of earthly life; per their scripture, the Qur'an, they acknowledge, "Every soul will taste death. And We test you with evil and with good as trial; and to Us you will be returned" (Q. 21:135). As it is well noted in the Islamic tradition, despite our attempts to find an elixir for everlasting earthly life, death is inherent in human life: "Wherever you may be, death will overtake you, though you should be in raised-up towers." (Q. 4:78) Therefore, Muslims accept the Qur'anic position of "live and let die." This attitude is especially evident in the famous Qur'anic expression that all Muslims recite in the event of death: "Inna lillahi wa inna ilayhi raji'un (Surely we belong to Allah and to Him shall we return)" (Q. 2:156). Furthermore, a famous prophetic tradition that remarks "Die before the death comes" also indicates the importance of remembering the mortal nature of earthly life in contrast to eternal life after death. 2 Such an approach to life and death in the Islamic tradition allows us to see dignity in death as we see dignity in human life. In some situations, death is even seen as a blessing for the person who is experiencing intolerable and unimaginable pain. 3 Nonetheless, Muslims also view death as the beginning of a different form of life called al-barzakh, that is, the interval between death and resurrection. In this respect, taking care of a dying person is one of the most important aspects of the Islamic tradition. Because of this understanding, Muslims are frustrated by COVID-19 requirements for death and burial that health care and government agencies are imposing on them. For example, Muslim families often challenge the "Do Not Resuscitate" policy, which instructs the health care team not to try everything possible to sustain the person's life. 4 2 See T.L. Perreira, "Die before you die": Death Meditation as Spiritual Technology of the Self in Islam and Buddhism," The Muslim World 100/2-3 (April/July 2010): 247-267. 3 Muslim families also feel obliged to comfort the dying person and remind them of God's mercy and forgiveness. There are specific rituals they want to follow that often put them at odds with COVID-19 hospital proticols, including but not limited to reciting the Qur'an at the patient's bedside, and providing Zamzam water from a well in Makkah, Saudi Arabia, to bring both comfort and a blessing to the patient. In the Shi'i tradition, instead of the Zamzam water, some may put ab-e torbat (sacred water) from Kerbala in the dying person's mouth. Other Muslims desire to sprinkle rose water in the room. A common belief among certain Mulims is that the dead person should not be left alone and in the dark. This is because they believe that evil spirits attack the dead if left in darkness. Therefore, many Muslims may put the Qur'an or a lamp close to or on the dead body in order to protect the dead person from evil spirits. Also, they may do so due to the belief that the Qur'an accompanies the soul of the dead person to the next destination. If no one is able to recite the Qur'an in the room with their deceased, then some Muslims will play pre-recorded tapes of Quranic recitations. 5 At the time of death, Muslim spiritual caregivers continue taking care of the person. They make sure the patient is covered with a sheet, their eyes closed, and the body directed toward the prayer direction (the qibla). Many Muslims prefer not to leave the dead alone. Therefore, families and friends should be notified immediately if they are not already present. In many cases, Muslim spiritual caregivers also meet and comfort loved ones during this difficult time.

Ismaili Muslims, on the other hand, contact the funeral ceremony volunteers or mukhti (a religious leader) in the jamatkhana (a place of worship in the Ismaili tradition) who make sure that the body is transported to the jamahkhana, where the family members, friends, and members of the community say farewell to the dead. It is important for them to practice the custom of the final viewing, which is called chhelli anjali, and to be sure that recitations of the ginans (devotional poems) and salawats (saying the blessing to the Prophet Muhammad and his family) take place. After the passage of 40 days, the family also gives a special tribute to the memory of the dead. In the Shi 'i tradition, this is considered very important because it is generally accepted that the soul completes its journey to the next world within 40 days.

Given these normal practices, official mandates by some governments to cremate the deceased goes against the Muslim understanding of death and end-of-life care, which is strictly guided by the Qur'an and established by the Sunna (the practices of the Prophet Muhammad), Muslim ijmaa (consensus) and qiyas (analogy) with a consideration of maslaha (public interest) and urf (local customs). 6 With all these sources, there is a common acceptance of cremation as being haram (unlawful), as it violates the dignity of the human body. In addition, the Muslim tradition, like many other faith traditions, emphasizes the rule that the deceased person should be treated with the utmost compassion, just as we would treat a person who is alive. 

Muslims understand that COVID-19 is highly contagious. This acute illness is posing health risks especially for people who suffer from underlying conditions and chronic health problems, such as cardiovascular disease, hypertension, and diabetes. The health complications and mortality due to COVID-19 also increase with various demographic factors, such as age, sex, ethnicity or race such as Black, Hispanic, and South Asian, those from lower socioeconomic backgrounds, and who reside in intergenerational spaces. 7 According to research, these already vulnerable patients who suffer from COVID-19 develop a disproportionate risk of developing severe reactions that require ventilation. 8 In the past, the Islamic tradition has historically shown great flexibility in its response to adapting faith and worship practices to different contexts. Based on personal conversations with community members, COVID-19 creates the following concerns among Muslims:

-Patients and families are overwhelmed by the pressure to accept healthcare prohibitions for not visiting the sick; -They are not able to decide what type of care is right for their loved ones; -They are unsure regarding what would be best for the dying person; -The patients suffer from psychological and emotional anxiety and fear of dying alone and being cremated; -Patients also fear being buried in a simple container when no viewing or visitation is involved; -The families are not able to fulfill tradition with memorial services after the death of the loved one; -Friends and community cannot help families cope with the patient's death and associated grief, mourning and bereavement.

COVID-19 has also triggered general concerns about the right to make choices in end-oflife situations, especially regarding the rights and obligations of patients in various situations. As a rule, the Islamic tradition encourages Muslims to follow certain guidelines regardless of the level of the patient's legal competencies for appreciating rights or haqq (pl. huquq): "(1) protection of al-din; (2) protection of life (alnafs); (3) protection of dignity or lineage (al-'ird); (4) protection of intellect (al-'aql); and (5) protection and preservation of ʿirḍ (honour, dignity) to the list of rights. 10 In the context of end-of-life care, the principle of dignity is important and does not vary with conditions of capacity or shurut al ahliyyat due to 'aql (intellect), buloogh (puberty), 'ilm (knowledge), and hurriyat (freedom). The general types of legal competencies (1) with regard to the acquisition of rights, ahliyat al wujuub and (2) with regard to the execution of obligations, ahliyat al adaa, might be affected by certain conditions, which include but are not limited to junoon (insanity), safah (mental retardation), ighma (loss of consciousness), sigar (infancy and childhood), maradh al mawt (terminal illness), nisyaan & sahaw(forgetting), ghaflat (absence of mind), nawm (sleep), ikraah (coercion), safar (travelling), and similar circumstances.

In the context of prognosis and severeity of symptoms, COVID-19 can be a terminal illness, or maradh al mawt. Importantly, for all Muslim patients the disease may affect the patient's capactity to perform certain religious personal obligations. We have witnessed cases in which a COVID-19 patient's mental state impairs capacity to make decisions and so a substitute decision-maker is needed. In such instances, certain religious practices such as salat or sawm (fasting) can be modified. 11 In response to these restrictions, some Muslims in the world, particularly in the UK and Sri Lanka, where the Muslim communities have been severely and widely affected, have already tried their best to introduce some flexibility regarding death rites. Some have even taken steps to avoid prolonged contact with the deceased body in order to prevent the spread of the virus. In addition, Muslim funeral homes have been performing salat al-gha'ib, or the absentee funeral prayer. Other funeral homes and mosques offer minimal washing. They have also instructed families to reduce the number of participants at the funeral site, allowing only a maximum of five people to attend each funeral. Furthermore, they see to it that those who had close contact with the deceased are not allowed to attend funeral services, as they are supposed to be in self-quarantine for 14 days.

Despite that even in death there is an important connection between the soul and body, the lack of accommodations by the Sri Lankan government, for example, has been interpreted "as a desecration of the deceased" and as "the latest step in a pattern of discrimination by the majority Sinhalese population." 12 In December 2020, the Sri Lankan Supreme Court summarily dismissed petitions by Muslim civil society members without providing any explanation. The petitions argued that the required cremation violated their rights. However, on February 10, 2021, the Sri Lankan government withdrew the compulsory COVID-19 cremation rule. On her Twitter account, U.S. Ambassador to Sri Lanka, Ms. Alaina Teplitz, welcomed the Siri Lankan Prime Minister Mahinda Rajapaksa's "announcement to end mandatory cremation of COVID victims." 13 Muslims constitute 10 percent of Sri Lanka's population of 21 million. Musims there feel that they have been demonized since April 2019, when the Sri-Lankan government issued a decree mandating cremation as the only method of disposal for all COVID-19 related deaths. It is important that, even with the flexibility of the Islamic tradition to modify certain Islamic rituals, COVID-19 restrictions should not affect the patient's right to be buried according to Islamic tradition, specifically honoring their belief against cremating their bodies.

Advocacy for the patient is an integral part of the relationship between health care, social services, and faith organizations. During COVID-19, many of those affected, especially those who do not have political power, needed strong advocacy partners to change certain practices in order to show sensitivity to personal choices and values. Considering the social and spiritual responsibility to take care of one another and foster mutual understanding and trust, many Muslims collaborated with other faith communities to advocate for Muslim and non-Muslim patients and families alike. For example, the news about measures suggested in Italy and the USA to prioritize treatment for "healthy" individuals while leaving out weaker members of society, including the elderly, patients with Down's syndrome, cerebral palsy and autism, 14 encouraged many religious groups to challenge such measures, joining together to advocate for the sanctity of life.

Similarly, in the United Kingdom (UK), in response to distressing news that those who died of COVID-19 might be cremated against the will of their families, 15 Muslim and Jewish groups called on the government to uphold Article 9 of both the European Convention on Human Rights and the Human Rights Act 1998, which protect the right to freedom of thought, conscience, and religion. In this case, the European Convention on Human Rights and the Human Rights Act 1998 were used to support frameworks for communities that believe in the sanctity of the dead body and for the requirement of a religious burial. Such advocacy also brought relief for Muslims and Jewish, and people from other organizations worried about being cremated against their wishes. 16 In the UK, non-Muslims supported Muslim sensitivities about burial rights during the COVID-19. By December 23, 2020, 287,542 people, including non-Muslims, signed the petition by Naveed Anwar from the Muslim community in the UK, addressed to the UK Parliament, to protect the right of burial for any Muslims who pass away due to the COVID-19 infection. Those who signed the petition wanted the UK Parliament "to consider an alternative way but as British Muslims, any other way other than burial is not allowed & is totally unacceptable." One non-Muslim who signed the petition noted this attitude: "Respect for dead is the best time honored duty of human beings…. We must honor the dead. I am a Christian and I love and respect the Muslim community. I have always gotten along with Muslims. I pray immature people like students and teachers at schools that are obsessed with conforming people don't trash anything and are respectful of all life and the dead." Other respondents noted: "Britain must respect religious freedoms… UK Parliament must protect the right of burial for Muslims who pass away due to Due to these advocacy efforts, the government did provide religious exemptions for cremation during the pandemic. 18 In Sri Lanka, religious minority communities faced similar challenges. The families of deceased COVID patients were allowed little or no contact with the patient. Families that could not afford luxury private quarantine facilities are taken to quarantine centers located far away from their loved ones in remote locations. The challenges related to COVID-19 death burials also revealed the socio-economic vulnerabilities in that society. For example, many activists reported incidents of abuse of religious rights by the Sri Lankan government, especially instances that affected people from economically vulnerable families. In those cases, they could not afford to spend extra financial resources to purchase special expensive coffins. Even so, coffins were not part of burial tradition in Muslim practice, as many bodies are only wrapped in cloth. Muslims have also supported Catholics in their effort to tackle the discriminatory policies of the government. For example, they supported Catholic leaders Oshala Lakmal and Ranmal Anthony Amerasinghe, who also initiated petitions regarding their fundamental rights in the Supreme Court. The petition challenged the government's decision that a body related to death either confirmed as or suspected of being caused by COVID-19 should be cremated within 24 hours, preferably within 12 hours. Multiple petitions to Sri Lanka's President and government by human rights groups such as the United Nations Human Rights Council (UNHRC) Special Rapporteurs, Human Rights Watch (HRW), People's Rights Group (PRG), Amnesty International, International Committee of the Red Cross, and the Centre for Policy Alternatives cited the World Health Organization guidelines on COVID-19 Deceased in 2020 and stated that the Sri-Lankan government's current practice violated the WHO guidelines. 19 Other Human Rights groups such as the Organization of Islam Council, WHO, Human Rights Commission of Sri Lanka, and Universal Human Rights Council have also supported the petitions of Sri-Lankan Muslims. For example, the UN Resident Coordinator, Hanaa Singer, sent a letter to Foreign Minister Dinesh Gunawardena, Health Minister Pavithra Wanniarachchi, and Justice Minister Ali Sabry in which she stressed that the Sri-Lankan government's practice of cremating bodies whose death was due to COVID-19 in order to prevent spread was not supported by evidence. 20 Meenakshi Ganguly, Human Rights Watch's South Asia Director, stated: "For families already grieving the loss of a loved one, the Rajapaksa government's forced disposal of remains in a manner contrary to their beliefs is an outrageous and offensive assault on religious rights and basic dignity. This policy only serves to cultivate intolerance and social division." 21 She also reminded the government of the WHO guidelines that provide important direction sensitive to various cultural and religious practices as well as meeting medical safety standards:

"People who have died from COVID-19 can be buried or cremated.

-Confirm national and local requirements that may dictate the handling and disposition of the remains.

-Family and friends may view the body after it has been prepared for burial, in accordance with customs. They should not touch or kiss the body and should wash hands thoroughly with soap and water after the viewing; -Those tasked with placing the body in the grave, on the funeral pyre, etc., should wear gloves and wash hands with soap and water after removal of the gloves once the burial is complete. 

Health care providers play an important role in making a difference in people's lives and advocating for their rights and dignity. Helping care providers understand Muslim spiritual needs during death is an important aspect of caring for the whole person. We should also continue taking care of the dying person in the same way we care for the person when they are ill. There are some important practical tips for taking care of the COVID-19 Muslim patient who passes away. First, the patient should be covered with a sheet and their eyes must be closed. The body should be directed toward the prayer direction. Although many Muslims prefer not to leave the dead alone, during COVID-19, this practice might be modified due to health risks to others. Nevertheless, family and friends should be notified immediately. If the hospitals have Muslim spiritual caregivers, or other spiritual caregivers, they should be called to meet the families and comfort them during this difficult time.

The following list, adapted from Islamic Spiritual and Religious Care: Theory and Practices, provides general guidelines for healthcare providers on taking care of a dying Muslim patient:

-If possible, arrange caregivers of the same gender; -Help the person to remain in a state of purity (tahara) (i.e., wash away any blood or other impure stains on the body, on the cloth, or on the bed). Make sure that wet paper towels are available after urinating or after passing stools. In Islamic culture, water is used in addition to paper tissues when cleaning oneself; -Make sure that dietary laws are observed (i.e., no pork or pork products, like pepsin, galantine or lard, even in small qualities are given to the patient). If halal is not available, and the patient has not presented any allergies or additional dietary concerns, kosher meat (some Shi'i Muslims do not consider that kosher meat halal), fish or dairy products may be perfectly acceptable; -Try to provide spiritual and emotional support to the dying person and the family members by drawing attention to his or her good deeds (thawab), worshipfulness, and good character; -Help him or her to perform daily prayers, if the person is wishing to do so. They may need your help to make ablution. For bed patients, provide wet towels to wash their faces. If the person requires having a bath after seminal discharge or after menstruation and post-natal bleeding, arrange it. If having a bath is not medically recommended or possible, explain the reason, and arrange an alternative method of purification, which is called tayammum. -If there is a language barrier, arrange an interpreter in order to provide open, timely and appropriate communication about care and ensure that the information you provide is understood. Some cultural and immigrant organizations provide interpreter services at no charge. -Arrange a CD player to play, or other diginal recording of the Qur'an or dhikr or devotional Islamic music; -Ask the dying person or the family members what is important for them at this stage (i.e., wiring the last will, pay off debts, ask forgiveness, reconcile with family members, friends, co-workers, the caregivers and the medical staff); -Help them to arrange final arrangements for a funeral or memorial service. Ask them if they have any connection to local Islamic organizations; if not, give them the list of the mosques. If you are not sure, connect them to the Spiritual Care Service so they can arrange a local imam to help. -If the person passed away, close the eyelids and the mouth by wrapping gauze or a piece of cloth around the chin and the head. Hold eyelids for a few minutes till they set closed. Straighten their arms and legs. Never lay the arms crossed over the chest. Cover the body with a sheet; -Release the body as soon as possible since the burial must happen as soon as possible. The body of the deceased must be buried within 24 hours;

In addition, the WHO also provides guidelines to faith leaders on how to support families in death and burial rites. For example, according to WHO guidelines: "Faith leaders can help grieving families to ensure that their departed loved ones receive respectful, appropriate funerals and burial rites, even in the midst of the COVID-19 pandemic. Knowing how to safely plan and perform such funeral rituals and services worship can both protect and comfort mourners and show respect for those who have died without causing any infectious risk to the mourners.

1. When acceptable or appropriate according to respective faith traditions, embalming, burial, and cremation should be allowed for the remains of persons who have died of COVID-19. 2. Religious leaders and local religious communities can work with families to integrate appropriate religious and cultural practices with burial and funeral steps that reduce the chances of infection. For example:

-If washing the body or shrouding are part of faith traditions, modifications will be needed to protect mourners: -At a minimum, people conducting these activities should wear disposable gloves. -If splashing of body fluids is possible, additional personal protective equipment may be requiredfor those participating in the ritual (such as disposable gowns, face shields or goggles and medical masks). -If the family of the deceased wishes to view the body after its removal from the medical facility where the family member has died, they may beallowed to do so, in accordance with local physical distancing restriction, with no touching or kissing of the body and thorough handwashing before and after viewing. -As modifications to burial and funeral rites are adopted, particular attention shouldbe paid to protect children and older adults in attendance." 24

The COVID-19 pandemic has challenged Muslims' personal and family choices regarding their religious and spiritual needs during illness and death. The traditional care and end-oflife ritual practices of Muslim patients have been impacted by this global pandemic. As a result, Muslims have collaborated with other faith communities worldwide to advocate for the religious rights of COVID-19 patients. They have shown great flexibility in modifying their own particular death rituals and rites to prevent the risk of transmission of COVID-19 from handling a deceased person's body, even though this sort of risk has been rated by international public health experts as low. Nevertheless, certain countries worldwide have taken extreme measures that have caused hardship to those trying to perform Muslim religious rites at the time of death and burial. In this respect, Muslims, like other faith communities, have had to advocate for COVID-19 patients and families when death is "imminent." However, their struggles in some countries are still ongoing as the codes protecting religious rights regarding the sanctity of the dead body and the need for a religious burial continue to be disregarded. In the midst of all these struggles, healthcare providers play an essential role in making a difference in people's lives to make the families feel heard and respected. The more they can be guided with information about Muslim religious spiritual needs at the time of death, the more they will preserve their human rights and dignity.

No cremation or embalming

Male relatives will wash male deceased and female relatives will wash female deceased. Also husband and wife can wash their children. In addition husband can wash the wife's deceased body and vice versa

For this, the following items are needed: 4 washers, 1 imam, kaffan (3 piece of white cloth for male) (5 piece of white cloth for female) -linked to Adam and Eve who were given fig leaves to protect their shame, 1 large cloth to cover body during washing (white to show purity), 1 soap, gloves, cotton wool, attar (nonalcoholic perfume), camphor. -Bereavement customs vary from culture to culture. Most Muslims mourn their dead for three days. However, if the person is a widow, it is four months and 20 days. Some Muslims also hold memorial services at the