Personhood

The crux of Hindu thought around identity views the self as an eternal, unchanging soul; the body and mental faculties are an external covering that the soul accepts as it transmigrates through various lifetimes. Various metaphors have been employed to understand the relationship between body and self, a prominent one being that of a chariot (body) and charioteer (self). Both are necessary for the human experience – but the soul is eternal while the body is destined to be temporary. In a study of 10 cancer patients, subjects spoke of resolving their earthly responsibilities and engaging in spiritual activities like participating in pooja (ritual worship) or looking at a photo of a Hindu deity as ways of investing in their eternal self and also providing relief and satisfaction in their current state (Simha et al. Reference Simha, Noble and Chaturvedi2013).

The degree of spirituality and its impact on personhood in the face of serious illness varies. In a study that administered the previously mentioned spirituality questionnaire to 300 cancer patients, researchers grouped by degree of spirituality – “spiritually trustful,” “intermediate,” and “spiritually distressed.” The authors found that women and those with low socioeconomic status were more likely to be in the “spiritually distressed” group. It was theorized that in the case of women, whose external identities and spiritual practice may be expressed through their central role as caretakers of the family, their terminal illness may precipitate a loss of identity and/or disconnection of their relationship with God and potentially their personhood (Gielen et al. Reference Gielen, Bhatnagar and Chaturvedi2016).

Purpose of human life and meaning of death

The circumstances surrounding death set up the next form that the soul will take and will potentially mark the completion of the birth and death cycle. In the Bhagavad Gita, a widely accepted authoritative Hindu text, the process of death is described as changing bodies, “As a person puts on new garments, giving up old ones, the soul similarly accepts new material bodies, giving up the old and useless ones” (Swami Prabhupada Reference Swami Prabhupada1978). Thus, death is not regarded as the end of an individual’s identity, but rather a disengagement from identifying with one’s current self – navigating this transition can cause significant existential distress.

Spiritual practices familiar to the patient may provide solace and direction in navigating this discord. Specific spiritual therapies that the patient can engage in include chanting mantras, singing, prayer, reading sacred texts, and engaging in ritualistic worship, often called pooja. A chapter in a handbook for EOL spiritual care lists common mantras and prayers that may be chanted and may serve as a useful starting place (Puchalski Reference Puchalski2006). The only example of a spiritual care “intervention” came from a single-cohort study in a group of 107 cancer patients undergoing concomitant cancer therapy and palliative care at a Hindu affiliated hospital (Sankhe et al. Reference Sankhe, Dalal and Agarwal2017). Participants were given the support of a comprehensive program labeled “MATCH” – Mercy, Austerity, Truthfulness, Cleanliness and Holy name. Components of this program included a vegetarian diet; refraining from intoxicants; spiritual counseling that encouraged open and straightforward dialogue; and prayers, meditations, and readings specific to the patient’s existing religious and spiritual beliefs. The program included 1.5 hours per day with each patient – 30 minutes each of reading, chanting and counseling. To assess changes in quality of life and emotional affect, patients and caregivers completed the Functional Assessment of Cancer Therapy-General (FACT-G) at admission, discharge, and 2-, 4-, and 6-months post-discharge. There were significant increases seen in FACT-G scale scores in patients and caregivers, indicating greater spiritual well-being, at each of the intervals compared to baseline. While this study had no control arm to ascertain the effects of treatment alone, it provides a remarkable example of a targeted spiritual care program in the Indian and Hindu context.

Role of family members in decision-making

In South Asian cultures, there is a preference toward collective decision-making and differences in disclosure of information. Several studies have documented the tendency for family members to request that terminal diagnoses be withheld from the patient, owing to the belief that fear of a terminal diagnosis may result in a worse outcome (Chattopadhyay and Simon Reference Chattopadhyay and Simon2007). In reflecting on a family member from whom a terminal diagnosis had been withheld, 1 participant mused that “autonomy was not really a concept she valued” and “she didn’t want to take on the burden of knowing everything and making decisions” (Sharma et al. Reference Sharma, Khosla and Tulsky2012). The lack of control desired over information and decision-making may seem unusual from a Western perspective but is not uncommon in a culture that values collective decision-making. It has also been suggested that while Western cultures are generally more explicit, Eastern cultures tend to favor more implicit ways of being told that a patient is near the EOL (Periyakoil et al. Reference Periyakoil, Neri and Kraemer2015). However, it can also be argued that some patients may want extremely clear communication if they are approaching death, because they may wish to practically arrange for an auspicious death for themselves through practices such as those outlined above (Patel et al. Reference Patel, Patel and Patel2020; Shanmugasundaram and O’Connor Reference Shanmugasundaram and O’Connor2009). Examples have also been cited of family members who were very upset at a lack of clear communication that their family member was dying, because this prevented them from preparing for rituals surrounding death (Firth Reference Firth2005). One first-generation Indian participant living in the United States shared that his view on disclosing a terminal diagnosis has changed since moving to the United States. In India, there was a strong support system to care for a dying person, and he felt that telling a patient would only serve to make the end of their life more difficult, whereas in the United States, he could not depend on such a support system and would want to know of a poor prognosis immediately, in order to make arrangements for himself (Sharma et al. Reference Sharma, Khosla and Tulsky2012). This theme of diminishing social networks as a motivator for proactively engaging in EOL planning was also seen in a study of 100 older adults and 100 younger adult Indian Hindus in the United States (Mohankumar Reference Mohankumar2009).

Advance directive completion

There have been multiple reports of resistance to advance care planning among Hindus (Thrane Reference Thrane2010). A study of Indo-Caribbean Hindus found mostly positive attitudes toward advance care directives, but the actual rate of advance care directive completion was low suggesting underlying reasons for resistance that may not have been fully uncovered (Rao et al. Reference Rao, Desphande and Jamoona2008). In one Canadian study of 34 South Asian participants, a sizable minority (44%) felt that palliative care went against their cultural values and spiritual beliefs, and an additional 29% were unsure if palliative care aligned with these beliefs (Dosani et al. Reference Dosani, Bhargava and Arya2020). A study among Indian Hindus in the United States found that “having strong religious affiliation and a family decision- making style were significantly negatively correlated with advance directive completion” (Doorenbos and Nies Reference Doorenbos and Nies2003). It has been theorized that patients may be less likely to pursue advance care planning due to language barriers, power hierarchies in the family, and cultural beliefs about death being taboo or inauspicious to discuss (Venkatasalu et al. Reference Venkatasalu, Seymour and Arthur2013). In a focus group study conducted in Canada, participants stated that filling out advance care planning forms felt like questioning the control of God. As one participant said, “We don’t plan about death and severe health conditions as we believe it is not in our control. Discussing and preparing for it puts us in control rather than God and the higher power” (Biondo et al. Reference Biondo, Kalia and Khan2017). A study interviewing South Asian Americans on advance care planning found that several participants had never been asked about advanced care planning in their interactions with medical care, while South Asian physicians shared that they often hadn’t brought up advance care planning with patients due to constraints of time or cultural hesitance toward talking about death. Additional barriers cited in this study were an implicit trust in the oldest child to make decisions, and fear that signing an advance directive would result in being denied health care during traumatic events (Radhakrishnan et al. Reference Radhakrishnan, Saxena and Jillapalli2017).

Increasing participation of Hindus in advance care planning may require reframing the language around it. For a Hindu patient, cultural preferences toward collective decision-making may mean that language conveying autonomy and individual control may not resonate and may paradoxically discourage a patient from completing an advance directive. The ability to share one’s wishes in order to approach death in a manner they would deem favorable and religiously aligned may be a better approach. One study shared a case in which a Hindu family wished to delay the removal of life support and allow for death until a time that was astrologically favorable, emphasizing the relevance of astrology in Hinduism (Dewar et al. Reference Dewar, Cahners and Mitchell2015). While advance directives may not include such provisions per se, the example of a request to delay the removal of life support until an astrologically favorable time represents the use of modern medical technology in the service of a patient’s religious and spiritual goals.

In a study sampling 293 Hindu physicians in the United States, 86% believed that their own religious belief did not influence their views on withdrawal of life support. Additionally, 79% of respondents had “adopted the US practice of discussing EOL care with the patient rather than primarily with the family,” signifying greater acculturation and/or responding to the needs of the patient population they were serving (Ramalingam et al. Reference Ramalingam, Saeed and Sinnakirouchenan2013).

With regards to CPR, the soul in a Hindu context is thought to be physically located in the heart, so the loss of heart function (possibly along with concurrent loss of brain and lung function) may signify the initiation of the dying process (Setta and Shemie Reference Setta and Shemie2015). In a survey of Indo-Caribbean Hindus in the United States, participants lacked a precise idea of what CPR entailed, and assumed that after a trial of CPR, the patient would generally make a full recovery and return home (Rao et al. Reference Rao, Desphande and Jamoona2008). It is worth ensuring that culturally sensitive communication is available such that patients understand the statistically low likelihood of benefit from CPR for certain patients and the reality that CPR administration can be traumatic. It is also important to clarify that denying CPR in an advance directive does not preclude one from accessing other forms of resuscitative treatment, such as blood transfusions or intravenous fluids.

Pain management

Hindu beliefs around detachment, impermanence of the physical body, and acceptance of suffering as inevitable aspects of life have been suggested as useful coping mechanisms for Hindu patients experiencing pain (Whitman Reference Whitman2007). An American study of clinician perceptions of patients’ use of pain management at the EOL reported that providers perceived South Asian patients to have greater reluctance to use pharmacological therapies compared with other patients. The 57 providers interviewed included physicians, physician assistants, chaplains, and social workers. Belief in karma, pain seen as weakness, and the desire for elderly patients to keep their mental faculties intact were hypothesized as reasons for their reluctance to accept analgesia (Khosla et al. Reference Khosla, Washington and Regunath2016).

When considering the use of life-prolonging interventions, the concept of ahimsa (nonviolence) provides a relevant lens. The concept of ahimsa appears throughout a broad variety of Hindu sacred texts (Chander and Lucinda Mosher Reference Chander and Lucinda Mosher2019). Ahimsa is not a simple call to avoid violence but requires a complex look at minimizing harm on a social, psychological, and spiritual level. In the context of EOL care and pain management, ahimsa is minimizing violence to one’s most eternal self, the soul. The complexity of ahimsa can be honored by methods that prolong life, or that end life peacefully.

Similarly, the concept of karma also shapes decisions around pain management for patients and families in a dialectical manner. This is illustrated by an exchange between 2 focus group participants who were unsure of how their understanding of Hinduism applied to accepting pain relief, with 1 focus group member stating “According to Hindu philosophy, suffering is the result of your past.… So some people say, let that person suffer”, while another member responded with, “But there is something available to reduce that pain so, are you doing the right thing or wrong thing?” Most participants echoed this sentiment and also stated the understanding that just because suffering results from one’s karma does not mean pain relief should not be given at the EOL (Sharma et al. Reference Sharma, Khosla and Tulsky2012).

Artificial nutrition and hydration

Many families may struggle with withholding ANH from a dying family member. In a study of the experiences of South Asian immigrants in Canada, the majority from a Hindu background, some caregivers felt that “force-feeding” a terminally ill person was the norm (Weerasinghe and Maddalena Reference Weerasinghe and Maddalena2016). In Hinduism, there also exists the concept of prayopavesha, or fasting until death. It is difficult to know what proportion of Hindus with terminal illness actually follow this practice. It differs from suicide in that there is a strong element of community approval. Additionally, it is only for those with terminal illness who perceive that they are very close to death. It is observed by individuals who have fulfilled their duties and achieved a sense of contentment; it does not come from a place of fear or frustration, but is rather a strategic, calmly thought out practice (Murato Reference Murato and Bregman2009). Unlike the decision to withdraw nutrition on behalf of a dying, unconscious family member, prayopavesha is decided by a person who is still in a clear state of consciousness. Terminally ill persons for whom death is imminent may have traditionally fasted from food and water to prepare for their death. A related perspective is that “suspending artificial nutrition and hydration is sometimes supported because there will be fewer bodily fluids and the soul can more easily leave the body” (Setta and Shemie Reference Setta and Shemie2015). The decision to withhold artificial feeds in the setting of reduced appetite as a person nears their EOL may be easier to conceptualize for Hindu patients for whom fasting till death is culturally familiar.