End-of-life care in the Indian context: The need for cultural sensitivity
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0973-1075.38901
Source of Support: None, Conflict of Interest: None
End-of-life care requires dealing with challenging issues along various dimensions - physical, psychological, social and cultural. In addition to physical care, the importance of mental healthcare for patients at the end of life is now clearly recognised. However, there is much less awareness about the cultural factors that are involved in end-of-life care. Sensitivity to these factors is essential to providing high quality care and satisfaction to patients. In India, patients come from varied backgrounds. Their end-of-life needs differ according to their belief systems and values relating to life and death in general. In turn, these are influenced by the position they occupy along various dimensions, such as class, religion, caste, community, language, gender, to name a few. Moreover, cultural variations in attitudes and values have important practical implications for individuals making crucial medical decisions. It is therefore important for medical, paramedical and mental health professionals to be cognizant of these factors so as to provide effective and satisfying end-of-life care to patients. This paper discusses some of the issues in providing culture-sensitive care, using examples from the Indian context.
Keywords: Cultural sensitivity, end-of-life issues, medical ethics, non-Western perspectives
Humans' efforts to understand and deal with death and dying issues are reflected in their preoccupation and fascination with the topic of death in philosophy, literature, religion, art and history. While general interest in death and dying issues dates back centuries, the study of issues around death and dying is a more recent phenomenon. The 19 th century advances in medical technology have brought about increase in life expectancy , and the shift in the place of death from home to a hospital or nursing home.  Today, most individuals - already alienated from the family and the community - die in unfamiliar medical surroundings.
The death awareness movement of 1950s has been a major impetus to the study of death and dying. There is now increased appreciation of the psychosocial issues that confront individuals facing their own or others' death. However, there is still inadequate awareness about the culture-related issues involved in end-of-life care, although these are very important. For example, problems related to living wills, prolongation of life by extraordinary medical technologies and questions about the quality of life are largely based on Western values. For instance, Western medical values tend to regard death as a failure and hence attempt to deter it as far as possible, but other traditions, such as Buddhist perspectives, are characterised by a tranquil and accepting attitude towards death, which is seen as natural and inevitable. These cultural variations in attitudes and values have important implications for individuals facing death and dying issues.
This study brings out the role of palliative care professionals in providing culture-sensitive end-of-life care while dealing with various psychosocial issues involved in death and dying. Values relating to life and death differ across cultures. Therefore, there is a need to weave Eastern approaches into end-of-life care so as to provide care that fits with people's individual and cultural psyche.
Anthropological studies in the field of bioethics have highlighted the cultural variations that come up in end-of-life decisions.  Most of the ethical guidelines for medical and healthcare professionals have been a product of Western biomedicine and may be more relevant to Western individualist cultures rather than Eastern collectivist cultures.  Contemporary Western bioethics tends to emphasise the values of access to information, autonomous decision-making and planning for end-of-life care. However, sociological and anthropological studies suggest that there are various models of health and illness across religious and cultural communities. For instance, among Chinese, health is seen as a state of balance of opposing elements in the universe. These are called yin and yang and refer to hot and cold forces. Ethical guidelines need to incorporate these diverse ways of understanding family relations, familial obligations, illness, suffering, death and decision-making. 
Values of beneficence and nonmaleficence
Western individualistic cultures tend to prioritise autonomy and self-determination in end-of-life care. These values are reflected in the practices of advance care planning, informed consent, individual decision-making and candid communication of the patient's condition. In contrast, non-Western cultures are largely influenced by beneficence and nonmaleficence, that is, promoting the patient's welfare and not doing any harm whatsoever to the patient.  These values cause them to encourage patient hope even in dire situations. Families may want to protect the patients by not discussing death and end-of-life decisions directly.
Dinh et al.  outlined the values foremost among the Chinese. The Chinese have great respect for learning and the learned, which includes the doctors. Secondly, they are guided by familism, particularly respect for elders and ancestors. Finally, they prefer to avoid conflicts. These three values have a profound influence in their approach towards end-of-life decisions. It is noteworthy that these values are similar to the Indian culture. Turner  found that Chinese Canadians prefer to use positive words and not to discuss end-of-life issues. Peng held that Chinese healthcare providers are guided by an ethic of cheng or 'parental protectiveness'. They are expected to act as patients' family members, protecting patients from harm and bearing the patients' burdens of illness. Therefore, healthcare professionals need to be aware of these differences in patient expectations.
There are a number of cross-cultural issues in ethical decision-making:
Language and communication barriers
Language differences between the healthcare professionals and the patients create considerable barriers in communication.  Moreover, there are different cultural methods of communication within the doctor-patient relationship. In many non-Western cultures, patients expect doctors to come to a diagnosis easily, with little discussion of symptoms. For instance, among the Chinese, not much explanation of symptoms and illness is expected. Laboratory procedures such as taking blood are resisted out of fear that the body cannot replace what is lost. Surgery is seen as a last option as it disrupts the balance of the body.  Another related issue, pointed out by Gordon,  is that the Western healthcare professionals often use medical terminology when communicating with patients, which is powerful, but also reductive and analytical. A preferred communication strategy would be the use of language that encompasses the human suffering.
Communication of 'bad news': One major ethical issue pertains to the communication of 'bad news' to the patients and their families. In modern Western biomedical settings, patients are seen as having the right to be aware of the seriousness of their illness. Doctors withholding information from the patients run the risk of being at the wrong end of lawsuits. Therefore, it is generally preferred that bad news be given in an honest and timely manner.  However, in many non-Western cultural contexts, patients and families may not prefer such directness regarding serious diagnoses. They may wish to protect patients from knowledge about the seriousness of their condition, fearing that this may create anxiety and depression and affect physical health. Families often perceive it as their responsibility to foster hope and shield the person from disturbing news. , Dinh et al.  found that the Chinese avoid discussion about serious illnesses.
Furthermore, it is often perceived as impolite or disrespectful to discuss serious illness directly.  Families may also wish to avoid conflict.  There may be a fear that if death is talked about openly it may occur. Many Eastern cultures give a great deal of importance to the language and words that are used, because of the belief that words have the power to shape reality. For instance, in the Navajo culture, it is believed that thoughts and words have the power to shape reality and to control events. Therefore, healthcare professionals prefer to use only positive words with clients, valuing protecting the patient from news over autonomy and truth telling. 
Locus of decision-making
Another major concern pertains to the autonomy of the patient. In Western cultures, the focus is on the individual autonomy of the patient and his or her right to making decisions regarding treatment. However, in many other cultural contexts, there is emphasis both on the individual afflicted with the illness and the family and community.  Therefore, they may prefer a collective rather than an individual decision-making approach.  Healthcare professionals are now considering alternate ethno cultural decision-making models that emphasise family-based, physician-based and shared physician-family decision-making.
One reason for preferring collective decision-making over individual decision-making is that collectivist cultures tend to place more emphasis on physician beneficence than on individual autonomy.  The emphasis on individual autonomy is often perceived as isolating rather than empowering in non-Western cultures. Eastern European medicine has had a long tradition of physician-centred, paternalistic decision-making. In Russian medicine, the physician rather than the patient or patient's family often unilaterally determines a patient's level of life support. In Asian, Indian and Pakistani cultures, family members and physicians may share decisional duties.  Among Chinese cultures, sociocentric and family-centred ideas are prominent.  Because of these variations, it is best to enquire from the patient and the family as to their preferred approach.
Informed consent: In the modern Western bioethics, informed consent is considered extremely important, as it is seen as reinforcing the patient's right to self-determination. However, in many non-Western cultures, individuals are unfamiliar with the process of considering various treatment alternatives and making a choice. They may prefer the doctor to make decisions for them. In many cultural traditions, the relationship between the healer and the afflicted person is hierarchical, where the doctor is seen as all knowing. Therefore, they may not be comfortable with having the responsibility of making important medical decisions themselves. Healthcare professionals have to consider the extent to which individuals desire to be aware of risks, benefits and alternatives. 
Advance care planning: This relates to making decisions in advance about what kind of treatment one wishes to have. It includes features such as living will and do-not-resuscitate orders. While this is a practice in Western cultures, many people from non-Western cultures think that it is inappropriate to plan in advance for future illness episodes.  They may be reluctant to engage in this, out of fear that it may actually invite serious illness and death.
Use of 'aggressive' measures: This involves the debate about the use of extraordinary medical measures to prolong the life of the patient. In some cases, such care is deemed 'medically futile' by the medical professionals.  However, patients and families may feel that they have a right to such care. Among Asians, children may feel a loyalty to care reverently for their elders and therefore may use extraordinary measures. Similarly, elders may feel an obligation to continue living for the emotional well-being of their children.  There are concerns about direct or indirect coercion to die in the case of vulnerable groups such as women, older adults, persons with disabilities and others.  All these aspects need to be taken into consideration.
Working in multicultural settings necessitates an understanding of the different philosophical perspectives toward life and death. Cultural factors are closely related to psychosocial issues in end-of-life care. What constitutes meaning to patients and help them cope would vary culturally. This section gives examples of how cultural factors can affect the way patients cope with death and dying issues.
Western and Eastern perspectives of life and death
In most spheres, Western philosophy has been importantly influenced by Cartesian dualism, which sees death as opposite to life. With the influence of modern biomedicine, death tends to be regarded as a medical failure. On the other hand, in non-Western philosophies, death is seen as part of life; dying is subsumed within life.  Most ancient spiritual traditions, including Hindu, Christian, Buddhist and Jain philosophies, see death as a normal stage of life and as imbued with meaning. Life and death are seen as one whole, where death is a part of life.  Death is also seen as a temporary phase, since it is eventually followed by reincarnation.
Patients' responses and needs: Patients' responses to serious illnesses are determined by their values relating to life and death. Many of these values are culture-specific. For instance, among many Eastern traditions, detachment is considered an important value. In the Vedanta tradition, the core of one's being is seen as eternal (i.e. the Atman). Death involves the annihilation of only the physical body, but not the Atman.  Therefore, detachment from the gross physical body is aimed at in order to achieve higher consciousness.
Palliative care professionals need to be aware of these notions of detachment since patients' needs are affected accordingly. Some psychological research suggests that one of the needs patients experience at the end of life is a need to disengage. This involves a turning inward and reducing one's attachments to life and people. Often it is coupled with a contemplation of the meaning of the past through reminiscence.  The concept of disengagement is similar to Buddhist notions of detachment so that the mental state of the dying person is not disturbed in any way. Buddhist practitioners often prefer that family and friends do not disturb the mental peace of the dying person by crying around him or her.
Coping with death and dying: In helping the dying patient to cope, the mental health or palliative care professionals try to make some sense of the individual's dying experience. This involves helping the patient to find meaning in his or her painful experience. But for patients from Eastern cultures such as India, it is often a religious belief system that provides meaning.  Therefore, there is now increasing attention to the emotional and spiritual welfare of dying patients.
Another psychosocial issue in end-of-life care is the extent to which the patient and the family are aware about the patient's impending death. This 'awareness context' has been found to be an important factor affecting how patients and their families deal with death and dying issues. Glaser and Strauss  identified four different awareness contexts. In 'closed awareness', neither the patient nor the family is aware of the patient's condition; only the doctor is aware. In 'suspicion awareness', the family members are aware of the patient's condition, but behave with the patient as if they are not aware. The patient has a suspicion that he or she is nearing death but receives no such indication from the family. In 'mutual pretense', both the patient and the family are aware that the patient is nearing death, but neither indicates this as they wish to avoid an uncomfortable situation. Finally, in 'open awareness', both the patient and the family members are aware about the patient's illness and they openly discuss the same among themselves.
While studies in Western cultures have found the open awareness context to be most beneficial and healthy for the dying patient, research in cross-cultural settings has found that many patients prefer to remain unaware about the severity of their illness. Their families may also endeavour to protect them from such 'bad news'. Thus, there are indications that there may be no single kind of awareness context that is ideal; rather this would vary depending on the needs of the patient and his or her family. Therefore, palliative care professionals need to be sensitive to patients' needs accordingly.
The hospice movement
The hospice model is one example of interdisciplinary end-of-life care.  It incorporates Eastern perspectives into end-of-life care in such a manner as to cater to patients' emotional and spiritual needs and not just their physical needs. Hospices do not believe in aggressive cure through invasive, highly technologised and curative treatments that often cause more pain and distress.  They focus on providing gentle 'care rather than cure' to dying patients for whom there is not much hope of cure from the illness. 
In India, families have traditionally taken on much of the responsibility for caring for ailing and dying people. However, with changing family structures and increasing mobility of families, patients and their families today face considerable difficulties in managing such care on their own. These factors have led to the growth of palliative care clinics and hospices in India.
Although most hospices are secular, Buddhism has had some impact on the hospice movement, owing to its concern with 'Good Death' or 'Conscious Dying' movement. In India, there is a Buddhist hospice in Bodhgaya, the Shakyamuni Buddha Community Health Care Centre, which was established in 1991. There are many values common to both Buddhism and the hospice movement. Both Buddhism and the hospice are guided by values of compassion and wisdom. There is a willingness to serve and an emphasis on ahimsa, that is, the duty to do no harm. This principle is the guiding force behind palliative care. Finally, both Buddhism and the hospice regard death as significant and provide a practical metaphysic to deal with end-of-life issues.  Buddhist meditation practices are seen as simple and practical methods of coping with death.
Cultural sensitivity today has become a crucial issue in end-of-life care worldwide. At the international level, there is easier and quicker mobility across the globe, which has brought nations and groups closer together. The increasing contact between cultures has led to mixing of cultures even while racial and ethnic conflicts continue to plague the contemporary world. In this context, there is now an appreciation of the need for tolerance and sensitivity towards individuals from different cultural backgrounds.
At the national level, India, with its diversity of religions, languages, castes and communities, presents a unique culture. At the same time, in India, culture-sensitive mental healthcare at the end of life is still in its infancy. Healthcare professionals, therefore, need to consider the entire sociocultural background of the patient, when trying to meet their needs. They also need to consider the needs of the patient's family, since India is a collectivist culture. In conclusion, healthcare professionals need to focus on the physical, psychosocial and spiritual well-being of dying patients and provide culture-sensitive care in order to ensure a high quality of life and 'good death'.