1) Thinking about care at the end of life, what is important and valued in your community?
End-of-life care is defined as "the active, total care of patients whose disease is not responsive to
Curative treatment. The philosophy of this care is to attain maximal quality of life through control of the myriad physical, psychological, social, and spiritual distress of the patient and the family.
Certainly, a good care for dying patients encompasses attention to spiritual issues at the end of life.
Some quotes from the Quran
Ø The origin of death: change of state when Adam and Eve ate from the forbidden tree, even though they were forgiven: “In the earth you will live, and in it you will die.” Qur’an 7:24
Ø The will of God: “It is not possible for a soul to die except with the permission of God at a term set down on record.” Qur’an 3:139
Ø “When their time comes they cannot delay it for a single hour nor can they bring it forward by a single hour.” Qur'an 16:61
Ø The only guarantee that comes along with birth is death. “To God we belong and to Him is our return” Qur’an 2:156
Spiritual care is an important and integral component of the comprehensive care given. My thoughts are not applicable to each and every patient as each patient is unique.
Indeed, not only do the schools of thought vary, but also the level of observance may vary considerably among patients within the same school of thought.
Muslims believe in divine predestination and attribute the occurrence of pleasure and suffering to the will of Allah.
They generally perceive suffering as a way of atonement for one’s sins, as the Prophet (pbuh) said, “No fatigue, no disease, nor sorrow, nor sadness, nor hurt, nor distress befalls a Muslim, even if it were the prick he receives from a thorn, but Allah expiates some of his sins for that.
This interpretation helps patients and families to cope with serious and life-limiting illnesses. However, it does not belittle the fact that every effort should be made to relieve suffering. Islamic teachings consider the relief of suffering of man and animal to be highly virtuous
2) Are there rituals or customs that are an important part of end of life care in your community?
In terms of treatment options, Muslim patients resort to modern medicine, spiritual healing, and traditional healing practices. The spiritual healing practices include recitation of verses of the Noble Quran, supplications taught by our Prophet (PBUH), drinking of the zamzam water obtained from the well in Makah in Saudi Arabia is also widely practiced. Keeping up with the prayers till the end and facing the Kaba at all times if possible
3) What expectations does your community have of medical caregivers for end of life care?
Let’s start with simple things and then go towards more complex issues
Scripture;
To support psychological and spiritual health and healing, it is widely believed that reading and reciting the Qur'an brings blessings to those who are spiritually and psychologically distressed; therefore, providing a copy of the Qur'an to Muslim patients is helpful
Prayers
The clothes and body of the patient must be free from any amount of urine,
Vomit, stool or pus or any bodily secretions or with any of these substances will render the patient ritually unclean and, therefore, unable to perform prayers.
This is where the nursing staff can be of great help in helping maintain this purity.
The patient is exempted from this requirement only when it becomes very difficult to fulfill. For patients who cannot perform ritual washing before prayers, it is permissible to perform Tayammum, which involves touching clean sand with both palms and gently sweeping them over the face and back of the hands. Prepacked sterilized Tayammum sets are commercially produced but not yet widely available
Every prayer takes about 5–10 minutes and the patients are required to face toward the Ka’abah (the cubical building built by the Prophet Abraham [pbuh] inside the Holy Mosque in Makkah) during the prayers
Prayer at end of life helps Muslims to seek forgiveness, feel closer to God, accept their mortality, and prepare for death or the afterlife.
Prayers, once begun, cannot be interrupted. This can create problems in health care facilities as health care providers may inadvertently enter a patient’s room when they are praying and misinterpret the lack of a response from the patient.
Diet:
Muslims avoid eating pork or drinking alcohol, and are proscribed from taking medicines that contain alcohol or pork byproducts unless they are life-saving drugs and no substitute is available. Usually at a time of necessity Muslims follow the general rule that “necessity dictates exception
Porcine heparin, for example, contains gelatin from pork products, and is the only heparin universally used. That was thought to cause a potential problem for Jewish, Muslim, and Seventh-day Adventist patients
Since January 2006, pork insulin for human use has no longer been manufactured or marketed in the U.S.
( http://www.fda.gov/CDER/drug/beefandporkinsulin/default.htm
In hospices it is helpful to pay attention to pork product usage in the daily food menu for Muslim patients. It is also recommended to inform the patient about medications that contain alcohol.
Today, with the mechanized slaying methods that are disapproved of by Islamic teachings (eg, electric shocking), many observant Muslims will not eat meat that is slaughtered by this method.There are no restrictions on seafood or vegetables. Patients
Special Month of Ramadan.
With advanced and incurable diseases the patient can feed a person for every fast missed but some patients may insist on fasting in the month in these cases, a Muslim chaplain or an Imam may be helpful to encourage and negotiate an alms giving alternative that reduces potential physical weakening
Muslim Women
Whenever a male healthcare provider cares for a female patient, he should always be joined by a female staff member or have the patient attended by one of her adult relatives. Exposure of the patient’s body parts should be limited to the minimum necessary, and permission should be asked before gently uncovering any part of the body.
Avoidance of eye contact between a female patient and a male healthcare provider should not be misinterpreted as lack of trust or a sign of rejection but rather as a common sign of modesty in this patient population
Now to the more complex issues
The guiding principle in Islamic medical ethics which is mentioned in Quran and also in the Torah is, "If anyone has saved a life, it would be as if he has saved the life of the whole of mankind."
However, the question that we are faced with, in terms of saving life, is at what cost and what quality. Does the quality of life modify our decision-making process and when resources are scarce, who takes precedence, the individual or the community?
In the question of the right to live or die, the question is should one prolong the life or the misery.
Who determines (the unconscious patient, the family, or the doctor), that the plug should be pulled and the life support system stopped?
What is the definition of death, acceptable to both the medical technology and Islamic jurists?
Is a living will justified?
Is stopping the life support system an act of mercy, a medical decision, a murder, or a financial decision?
What about DNR (Do not resuscitate)?
What about Organ transplants and organ donation?
How to handle after death issues including autopsy and Embalming?
Islamic code of medical ethics
Islam has a parsimonious and rigorously defined ethical theory of Islam based on the 5 purposes of the Law, maqasid al shari’at.
The five purposes are preservation of din, life, progeny, intellect, and wealth. Any medical action must fulfill one of the above purposes if it is to be considered ethical
Some of the rules of Islamic medical ethics are
1) Necessity overrides prohibition that is if there are certain items which are islamically prohibited, under dire necessity they can become permissible.
2) Accept the lesser of the two harms if both cannot be avoided.
3) Public interest overrides the individual interest.
4) Harm has to be removed at every cost if possible.
Islamic Medical Ethics also upholds the four basic principles of biomedical ethics which are 1) Respect for the autonomy, 2) Beneficence, 3) Nonmaleficence, and 4) Distributive Justice
Muslims believe that death does not happen except by God’s permission; “It is not given to any soul to die, save by the leave of God, at an appointed time” (Holy
Quran 3:145).
There is no immunity in Islamic law for the physician who unilaterally and actively decides to assist a patient to die; but delaying the inevitable death of a patient through life-sustaining treatment is neither in the patient’s nor the public’s best interests because of limited financial resources. Withdrawal of life sustaining treatments in such instances is seen as allowing death to take its natural course.
The common belief is that death is the termination of all organ functions. In 1986, at the third International Conference of Islamic Jurists in Amman, Jordan, a fatwa was issued that “equated brain death to cardiac and respiratory death.” This ruling accelerates and facilitates the process for organ transplantation
Since death is viewed as a process that bridges the soul's existence from one life to the next, it is acceptable to discontinue the use of life support equipment that prolongs the life of a patient. In medically-futile situations, in which life support equipment is used to prolong organ functions, the condition needs to be carefully explained to the family so they do not mistake DNR orders with euthanasia.
Reference for aboveThe Islamic Code of Medical Ethics states, "it is futile to diligently keep the patient in a vegetative state by heroic means ... It is the process of life that the doctor aims to maintain, and not the process of dying" (Islamic Organization of Medical Sciences, 1981). Therefore, a clinician may stop interventions that artificially prolong life without hope for a cure, while continuing to treat the patient's pain as long as the patient and/or family desire (UNN Islamic Society, 1999a).
Under such conditions, however, the basic human rights of hydration, nutrition, nursing and pain relief cannot be withheld. These may be carried out at home or in an institution as the case warrants.
Medication realated Sedation
In the Islamic perspective, medication-related sedation could be looked at from two different angles. On the one hand, alleviation of the suffering of a human being is considered very righteous. On the other hand, maintaining a level of consciousness as close to normal as possible is of great importance to allow for observance of the worship rites for the longest period possible before death. In terminally ill patients, it may be difficult to maintain a state of equilibrium allowing for optimal symptom control and a normal level of consciousness. In these situations, the pros and cons should be clarified to the patient and family, who may prefer to endure a slightly higher degree of symptoms in order to maintain a better level of consciousness
Transplants
Since there are no specific codes on transplant and organ donation in the Shari'ah, there are different approaches to treatment. Most Muslim jurists and their followers accept organ donations because it is in harmony with the Islamic principle of saving lives
The following requirements should be met before transplantation: (1) a transplant is the only form of treatment available; (2) the likelihood of success is high; (3) the consent of the donor or next of kin is obtained; (4) the death of the donor has been established by a Muslim doctor; (5) there is no imminent danger to the life of a living donor; and (6) the recipient has been informed of the operation and its arrangement for ritual body wash
Quadri, K. H. (2004). Ethics of organ transplantation: An islamic perspective. Saudi Journal of Kidney Diseases and Transplantation : An Official Publication of the Saudi Center for Organ Transplantation, Saudi Arabia, 15 (4), 429-432.
Advanced directive
IMANA ( Islamic Medical Association of North America) recommends all Muslims to have a “living will”, “advance directive” and a case manager for their care, to help physicians to know the wishes of patient, when he or she is unable to give directions (i.e. in a coma). A sample of such proposed living will is provided which can be modified by the patient after consulting with family and attorney. (Ref: JIMA: Vol.29:1997
Autopsy and handling the deceased
The Muslim family expects the body of the deceased to be handled in a dignified manner and as gently as possible, because the sanctity of the dead person is considered the same as the living. Therefore, Islam forbids cremation and, furthermore, prohibits walking or sitting on a grave once death is pronounced, the rites of washing, shrouding, funeral prayers, and burial should follow as soon as possible. In addition to expressing empathy, the major role of the healthcare team at this stage is timely documentation to prevent any unnecessary delay in proceeding with funeral rites. Condolences to the family
Autopsy is not permissible except when deemed necessary for legal or community health reasons.
What issues does your community have with end of life care as you experience it now in the healthcare system?
Euthanasia is not allowed in Islamic law. Human life is considered a sacred value, given by God, and to be taken only by God (with few exceptions). The Quran states, "If anyone slays a person ... it would be as if he slew the whole people. And if anyone saved a life, it would be as if he saved the life of the whole people" (Quran 5:32). Suicide is forbidden in Islamic law as a crime and a grave sin, met with eternal suffering. Similarly, mercy killing has no place in Islam.
Embalming and cremation are forbidden in Islam; therefore, the families try to bury their loved ones before the body decays
For Muslims, talking to an Islamic spiritual care provider about God, the afterlife and prayers may be helpful at the dying stage. But for hospitalized patients this is not always easy. “Most hospitals have chaplains and they are available around the clock. But, chaplains are predominantly trained in the Christian paradigm,” Very few hospitals have Muslim chaplains
What hopes would you have for end of life care based on your own hopes and your community’s?
For myself I would have the hope of attention to my whole self with respect & compassion, rather than focusing narrowly on bodily functions & lab tests. All interventions used should be to enhance the dignity & autonomy & to increase the amount of enjoyable time that remains, best in familiar surroundings where I may best experience the love of family & friends
To be afforded dignity and privacy and have control over pain relief and other symptom control. To have access to any spiritual need and be able to keep up with my prayers at all time.
To have the time to say good bye and be able to leave when it is time to go and not to have life prolonged pointlessly
Dr. Reshma Khan