End-of-Life Decision-Making and Intensity of Care
Although very few studies have been conducted regarding the prevalence of and knowledge about advance care directives among Asian Indian, the data indicate that many individuals do not have these documents. This may hold particularly true for older Hindu adults who were born in India. Small studies have also shown an inverse relationship between the strength of religious and traditional beliefs and the presence of a completed advance care directive.
As mentioned earlier, Asian Indian philosophy has a multitude of interpretations that have become intricately woven into cultural customs and traditions that vary tremendously among regions in India. Furthermore, Asian Indians may not view death as a final event but more as a transition for the soul from one life to the next.
The family plays a central role at the time of terminal illness or death. From a traditional Asian Indian perspective, it is very important for the family members to be at the bedside of the terminally ill patient praying, chanting hymns, or bringing in pictures or idols of gods/goddesses.
Some families may be hesitant to allow health care providers to give a dying patient sedating medications (because it may be important to the family that the patient be as awake as possible through the dying process). These traditions reflect a belief that dying individuals should be thinking of God as they go through the dying process, because it is believed that the nature of one’s thoughts at the time of death determines the destination of the departing soul.
However, if the clinician identifies that the patient is experiencing intractable suffering caused by refractory symptoms (e.g., pain or dyspnea) and is requesting palliation of these symptoms, sedation of the patient and gentle education of the family members will likely result in assent with needed palliative measures. Some may be hesitant about intubating the dying patient or doing a tracheostomy as the conscious patient might not be able to express his or her last wishes.
At the time of death, family members may request that the body be positioned in specific directions (head facing east for some and feet facing south for others) or that it be placed on the ground (return to mother earth). Families may also request health care providers to allow them to place a Tulsi (Ocimum Sanctum) leaf or drops of water from the Ganga River on a patient’s lips. They may want to audibly chant the Bhagavad Gita or other vedic hymns at the time of death. Again, this allows a patient to focus on God as their soul leaves the body. Muslims may express a preference for moving the patient so that s/he faces Mecca and may want to chant the Koran at the bedside.
After death, it may be important for family members (of the same gender) to be allowed to perform ritual washing of the body and prepare it for cremation (typically Hindus do not bury their dead), which should ideally be done within 24 hours of death. Muslims, in contrast, typically bury their dead.
Christians may opt for burial or cremation. Most Asian Indian families will not request an autopsy but may not be opposed if there are clear reasons for it. Regardless, this is a delicate topic and should be approached with the sensitivity it deserves.
The cultural and religious background of Asian Indian older adults often influence end of life care decisions. Older patients are more likely to subscribe to family centered decision making rather than being autonomous. Sometimes family members may ask the physician not to tell patients their diagnosis or other important information.
Open-ended questions as to why the family does not want the patient to know may be helpful.
Many patients prefer to die at home and there are specific rituals and practices in each religious community. Many believe suffering is due to karma. When close to death, family members are likely to be present in large numbers. A dying person may wish to be moved to the floor, with an idea of being close to the mother earth. Family members will prefer to wash the body after death.
The mourning family may prefer to have a priest (Hindu and Christian) or a mullah (Muslim) perform a prayer and blessing. It is very important to provide privacy to the family after the death of a family member to allow the religious rites to be performed. It is an accepted practice for family members and others to have an open expression of grief. After cremation, there is a mourning period of from 10 to 40 days.
Most Indians do not readily agree to a post-mortem examination or organ donation- although these beliefs are changing amongst the recent immigrant elderly. Molzhan et al (2005) conducted on South Asians Canadians to understand their beliefs on organ donation, with study participant belonging various age ranges, religion and background. They found a wide range of themes emerged concerning death and organ donation—most noted that the community involvement and information would be useful in encouraging better participation.
The authors conclude that one should not conclude on issues concerning organ donation on the mere premise
