End-of-Life Practices in Rural South India: SocioCultural Determinants

INTRODUCTION

End-of-life care of terminally ill is a sensitive topic in our sociocultural ethos. In a country where euthanasia policies are widely debated, dignified death is a desired form of death. Euthanasia literally means “good death.” It is also popularly known as “mercy death” as it is practised to lessen the pain of an individual and ensure a dignified death. In India, only recently a landmark verdict on the passive euthanasia has been passed by the Supreme Court.[1] In addition, lack of an effective palliative care system has led to complex situations toward the end of life. Globally, it is estimated that palliative care is needed in 40%–60% of all deaths.[2] Home-based palliative care models have been successfully implemented globally. The ultimate goal of these home-based care is to “promote, restore, and maintain a person's maximum level of comfort, function, and health, including care toward a dignified death”.[3] However, still it is an unmet need in the community leading to several practices intertwined with cultural and religious beliefs. These practices which are widespread do not come into the limelight for well-known reasons. Many individuals who are believed to be terminally ill are taken home to die a “peaceful” and “dignified” death surrounded by their loved ones. In addition, there are several social, religious, and cultural beliefs and factors embedded in this decision to take care of the terminally ill at home and end-of-life practices.[4] There are also traditional practices which are sparsely reported in several parts of the country which claim to liberate the elderly from a painful death and providing them relief, thereby making their death “dignified”.[4567] Such practices have become firmly entrenched as social customs and may not be considered as euthanasia by the concerned people. However, there is a dearth in the literature which documents these practices and the several determinants which lead to these practices in rural Tamil Nadu. This study explores the several end-of-life care practices and the social, cultural, and religious dimensions associated with those practices in rural Tamil Nadu.

METHODOLOGY

The study was conducted in rural areas as defined by the Government of India in and around Coimbatore.[8] Two focus group discussions (FGDs) and four in-depth interviews (IDIs) were conducted. Ethical approval was obtained from the Institution Human Ethics Committee, and written informed consent was obtained from the study participants who are permanent residents of the area and aged >40 years and had experience in taking care of any elderly or terminally ill individuals in their household. They were selected by convenience sampling. The field guide was prepared before the FGD. The FGDs were led by a moderator and an observer for taking notes and observation. All FGDs were recorded with the participant's permission and transcribed.

Based on the FGD findings, IDIs were conducted among four women who were involved in end of life practices for people who are terminally ill.

RESULTS

The study revealed the various end-of-life practices in the rural area when a person is terminally ill and the common social, religious, and cultural beliefs associated with such practices. The FGD also brought out several practices and rituals that were prevalent in a community to end the life of an individual who is terminally ill to bring about a peaceful death and alleviate their suffering. Similar rituals are reported sporadically elsewhere.[56910]

The rituals that are practised are as follows:

1. Oil bathing otherwise called as “Thalaikoothal” means giving a shower on the head in the regional language in which the terminally ill person is given an oil bath using gingelly oil and cold water several times in a week

2. Feeding with holy water or milk: Feeding water or milk to the bedridden, semi or unconscious person with an intention to end the suffering. Tender coconut water, “Theertham” – holy water, from different temples and Kasi temple and the holy water used for bathing the deity in a temple are all used for such rituals

3. Practices to address the attachment toward materialistic things: Water with soil or mud from the land owned by the terminally ill person is used with the notion that the terminally ill person is attached to his/her materialistic possession. This water mixed with the mud is fed to the ailing individual several times until the death occurs.

All these rituals hasten death by causing hypothermia, renal failure, and aspiration pneumonia, etc.

Transcription of the recordings revealed various reasons behind practising such rituals which fell under the following major themes [Figure 1]. (i) Socioeconomical, (ii) cultural, (iii) moral, and (iv) spiritual.

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Figure 1

Major themes evolved during focus group discussion

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DISCUSSION

The article has explored the views and perception behind end-of-life practices and rituals. The study has highlighted various determinants and beliefs such as the socioeconomic, cultural, spiritual, and moral views behind the practices leading to the death of an individual who is terminally ill. In addition to end of life practices when a person is nearing death (e.g., feeding them holy water etc,) some practices are deliberately followed to hasten death to minimize further suffering and ensure a peaceful exit. It is important to know and understand such practices and the context behind them, to educate and design interventions to prevent those which cause deliberate death such as Thalaikoothal. Exploration of the various themes emerged shows that apart from the socioeconomic causes, customs, and cultural reasons among the closed communities encourage such practices. Moreover, the moral obligation of the son or daughter of a family to ensure that their parents or the elderly die a peaceful and dignified death is very evidently a strong-rooted belief. Therefore, they resort to such practices/rituals to alleviate the suffering of their dear ones. The discussion also brought out the community's perception that only good death can help people reach God. This was very evident when people who execute these rituals in the community said that they felt content in helping those who are suffering reach God. On another dimension, this study also undermines the need for an effective palliative care approach during the end of life. A community-based palliative care approach involving the multidisciplinary health team or the neighborhood network in palliative care model adopted in Kerala which is a community owned and driven by volunteers can be considered.[11]

CONCLUSION

The study has brought out the various end-of-life practices that are followed in rural areas to hasten death of their dear ones who are terminally ill. It also highlights the perception behind such practices. These insights can be targeted on giving awareness to the people and bring about changes in rural society. However, strong are these practices intertwined in our society under the cover of “dignified death,” it has to be considered as an act of euthanasia and the sufferings of the elderly cannot be neglected. Hence, such practices have to be curtailed by bringing about awareness and penalizing such acts. Effective elderly care and whenever facilities are available, the Government should consider offering home-based care for the elderly. It should be incorporated into the primary health-care system.