Spiritual issues at end of life
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0973-1075.38899
Source of Support: None, Conflict of Interest: None
Spirituality is multifaceted. The various beliefs regarding the concept of spirituality, spiritual needs of terminally ill patients and the methods of spiritual assessment are discussed here. There is a close association between demoralization, distress, spiritual pain and spiritual distress. Standardised clinical methods to assess spiritual distress and provide spiritual care and healing are available. Spiritual well-being is a significant dimension of overall health-related quality of life. Although there seems to be traditional and natural spiritual care in our society and especially in palliative care settings, hardly any formal training or interventions are available. This paper aims to encourage soul searching in the end-of-life care.
Keywords: Cancer, end of life, palliative care, quality of life, spirituality
Spiritual care is an essential component of palliative care. A World Health Organization's Handbook on Palliative Care by Helmut Sell describes palliative care as comprising of relief from pain and other distressing symptoms; psychological and spiritual care of the patient with the aim of improving morale and emotional status despite poor physical prognosis; work with family, friends and caregivers to establish a support system to help patients to cope, to remain self-determining and to live as joyfully and actively as possible until death; a support system to help family during the patient's illness and in bereavement.  All aspects of this definition including cancer pain, morale, family, death and bereavement have a significant element of spirituality.
Spirituality plays an integral role in the care of the terminally ill. Hospice philosophy promotes patient- and family-centred care that is palliative, holistic and interdisciplinary. Spiritual care has been a major component of hospice care that is consistent with these values. Pertinent issues related to the role of spirituality in palliative care include the doctor-patient relationship, provision of spiritual care, who provides this care and the difference between spirituality and religiosity.  In today's medical practice, even a deeply concerned clinician can consider spiritual aspects of a patient's care as problematic, viewing them as ethical problems or psychosocial ones.  Spirituality includes two main components: faith/religious beliefs and meaning/spiritual well-being. These two constructs of spirituality have an important role in supportive care and end-of-life care.
There is a close association between feelings of demoralization  and spirituality, as demoralization implies deprivation of spirit, courage and discipline.  Demoralization is experienced as a persistent inability to cope together with associated feelings of helplessness, hopelessness, meaninglessness, subjective incompetence and diminished self-esteem. Demoralization has been commonly observed in the medically and psychiatrically ill and is experienced as existential despair, hopelessness, helplessness and loss of meaning and purpose in life. Although sharing symptoms of distress, demoralization is distinguished from depression by subjective incompetence in the former and anhedonia in the latter. Demoralization can occur in people who are depressed and in cancer patients who are not depressed.  Hopelessness, loss of meaning and existential distress are proposed as the core features of the diagnostic category of demoralization syndrome. This syndrome can be differentiated from depression and is recognizable in palliative care settings.  Thus, there is an apparent admixture of depression, loss of meaning and purpose and existentialism in demoralization.
The doctor-patient relationship and communication has spiritual hues, which are less often recognised. In Indian settings, patients and families still view doctor as God-like or Godly and often leave decision making to the doctor! Decision making on someone else's behalf, discussing diagnosis or bad news is never easy as it goes beyond discussing medical facts and emotions. Patients and relatives raise questions like - "Why me?; What will happen in future?; Why did this happen to me?; What will happen to me after I die?; Will I be remembered?; Will I be missed?".  Such questions assume importance at the end of life, as the uncertainty can potentially cause distress and restlessness of the mind. A large part of this distress is spiritual distress. Spiritual and religious factors also influence health dynamics - trust in clinicians and nurses, stigma, own group dilemma and treatment adherence. Members of many religious groups may feel best understood by a professional who shares their own religious background. Spiritual and religious factors play a significant role in formation and maintenance of support groups. 
Palliative care clinicians should be alert to symptoms of spiritual distress and intervene accordingly. Spiritual distress may be associated with negative religious coping. Negative religious coping like punishment or abandonment by God, was reported to be positively associated with distress, confusion, depression and negatively associated with physical and emotional well-being, as well as quality of life.  The exact prevalence of spiritual distress in end of life in Indian settings is not known; although given the use of traditional, spiritual coping methods in different stages on cancer, one might speculate that spiritual distress could be relatively less or different from the Western world.
When faced with suffering and threats in life, patients frequently articulate spiritual concerns.  Cancer patients use spiritual and religious coping methods naturally, when other coping methods do not provide solace. In a study of cancer patients in Bangalore, the commonest coping methods used were resort to religion and karma.  Cultural and spiritual factors are invariably inter-related and it may not be possible to segregate these.
Do spirituality and religiosity need to be distinguished in end-of-life care?
This is an important question in palliative care since both spirituality and religiosity increase as death approaches. Spirituality, religion and creativity may be inter-related and significant in their own right. One's spirituality or religious beliefs and practices may have a profound impact on how the individual copes with the suffering that accompanies advanced disease. People confuse between spirituality and religiosity and consider these synonymous. It is important to recognise that there are clear-cut differences between spirituality and religiosity. Spirituality is especially important in developing countries and traditional societies where medical and comfort resources may be limited. 
Spiritual pain has been defined as "pain caused by extinction of the being and meaning of the self."  The conceptual framework of spiritual pain based on a philosophical perspective consists of three dimensions of a human being - as a being founded on temporality, a being in relationship and a being with autonomy. The attempts to assess these perspectives make it easier to talk with the patients about their spiritual pain. 
The large body of empirical research suggesting that patients' spiritual and existential experiences influence the disease process has raised the need for health care professionals to understand the complexity of patients' spiritual pain and distress.  A study evaluated participants' intensity of spiritual pain, physical pain, depression and intensity of illness, with a qualitative focus on the nature of patients' spiritual pain and the kinds of interventions patients believed would ameliorate their spiritual pain. It was noted that 96% of the patients reported experiencing spiritual pain, but they expressed it in different ways, as an intrapsychic conflict, as interpersonal loss or conflict or in relation to the divine. Intensity of spiritual pain was correlated with depression, but not physical pain or severity of illness. The intensity of spiritual pain did not vary by age, gender, disease course or religious affiliation. Given both the universality of spiritual pain and the multifaceted nature of pain, Mako et al.  proposed that when patients report the experience of pain, more consideration be given to the complexity of the phenomena and that spiritual pain be considered a contributing factor. The authors caution that spiritual pain left unaddressed both impedes recovery and contributes to the overall suffering of the patient.
Spiritual healing and treatment of spiritual distress
Spiritual distress and spiritual pain would need a management plan directed towards spiritual healing. Invariably patients and their families seek relief from different lay sources. It is known that patients, at the end of life, are vulnerable to suggestions and counsellors need to desist from imposing their own beliefs. In most instances, a sympathetic hearing to spiritual concerns is needed,  helping individuals to come to their own conclusions.  Guidelines for spiritual care giving include self-knowledge of one's own spiritual needs, authenticity and honesty and respect for the beliefs and practices of the patient and his/her family.  Existing psychotherapeutic interventions for spiritual suffering can be provided by a novel meaning-centred group psychotherapy for advanced cancer patients.  The meaning-centred therapy is being used in a number of palliative care centres in the West, its applicability and usefulness in Indian settings is as yet unproven.
There are many systems of alternate and unorthodox medicine, most with some component of spirituality. Hospice professionals recommend that these are best tried outside the hospice unless they have been shown to have proven utility through clinical trials.  The availability of numerous systems of alternative medicine and a hope for cure even at late stages of the disease means that many patients depend on these as their main form of treatment  and hope. Complementary and alternative medicine plays a key role in palliative care and improves the quality of life, to some extent, perhaps, due to some overlap or admixture with faith and spirituality.  Traditional therapies like pranic healing, yoga, pranayama, transcendental meditation, sudarshan kriya yoga (SKY), music therapy, tai chi and other complementary methods like reiki, aromatherapy and alternative medical fields like ayurveda and naturopathy, all have a variable spiritual element and are popular in traditional societies.  Some studies have examined client use of spiritual and/or religious practices to cope with illness and adversity. One survey  indicated a significant relationship between spiritual practices such as yoga, prayer and meditation and well-being while working with palliative care clients. The total number of these approaches utilised was predicted by factors such as theoretical orientation and the social workers' own struggles with palliative care and other issues.
Inadequate scientific research on these complementary or alternative methods casts doubts on their effectiveness. These methods with unproven results and misleading advertising attract the gullible patients with advanced diseases.  Public faith in these relatively inexpensive systems is tremendous , and the inadequacy of the expensive modern medical systems only strengthens the resolve of the affected patients and their families to use these unproven systems.
Spirituality is complex and challenging to implement into clinical actions. Professionals have little or no training on how to deal with this aspect, especially in the end of life. Palliative care education programmes should have sufficient training inputs on spiritual aspects. Measurement of spirituality and spiritual care needs to be important components of such training.
Measurement of spirituality
There are a few structured methods of assessing spiritual aspects such as HOPE (Sources of Hope Organised religion Personal spirituality and practices, Effect on medical care and end-of-life issues),  FICA ( Faith, Importance/influence, Community, Address/apply),  SPIRIT ( Spiritual belief system, Personal spirituality, Integration with a spiritual community, Ritualised practices and restrictions, Implications for medical care, Terminal events planning).  Sulmasy  has described a semi-structured interview consisting of different questions, which can help assessing spiritual issues raised by serious illness, especially at the end of life
Spiritual and existential well-being are major components of health-related quality of life,  especially at the end of life. Overall, quality of life (QOL) is highly correlated with spiritual well-being among dying patients.  There are also some standardised methods to assess spiritual well-being and spiritual QOL such as the World Health Organization Spiritual, Religious and Personal Beliefs (WHOQOLSRPB) scale,  Functional Assessment of Chronic Illness Therapies (FACIT Sp) Spiritual Well-Being Scale  and Holland's Brief Spiritual Beliefs Inventory for use in QOL research in life-threatening illness.  The simple way would, however, be listening to the person's spiritual concerns, thoughts and feelings, acknowledge these and reassure. Peace of mind and spiritual satisfaction were considered more important than functional and psychological aspects in Indian cancer patients. 
Most hospices in India provide nursing care through Christian missionaries,  who while providing a tremendous selfless service, give rise to situations that may create conflict between the more dominant religious groups, viz. Hindus and Muslims. Although such services by voluntary Christian agencies are provided in many developed countries, these are predominantly Christian and they may not encounter the same conflicts as patients from different backgrounds are likely to face when the communities they come from are as pluralistic as India. This gains significance given the importance of religion in death, pre-death and post-death ceremonies. Within clinical experience, one comes across patients seeking religious conversions during their last days of life, creating conflict within the family and community.  On the other hand, religious groups have successfully participated in community palliative care programmes.  Professionals working in palliative care settings employ many different methods to improve QOL for patients including suggesting prayer, devotion, yoga, meditation or philosophical pursuits.  A concept unique to India is when the patient seeks refuge in holy or religious places, akin to hospice towns or cities, to obtain mental and spiritual solace while awaiting death. 
Spiritual issues of caregivers: The spiritual issues in the caregivers of the terminally ill person are equally, if not more, important. The spiritual concerns and distress in caregivers are likely to continue from period of anticipatory grief to the grieving period. The assessment and care of spiritual distress in caregivers could be similar to that of patients.
Existential and spiritual issues are gaining clinical and research importance in palliative and supportive care. As concepts of adequate supportive care expand beyond a focus on pain and physical symptom control, existential and spiritual issues, such as meaning, hope and spirituality in general, have received increased attention from supportive care clinicians and clinical researchers.  Spirituality cannot be imposed, it can only be shared.  The objective of addressing spiritual issues at the end of life is also to ensure a 'good death', which requires access to any spiritual support required by the patient or others involved in their care.  Traditional palliative care in India has been practised through the ages, with home-based spiritual and religious care for the dying according to traditional customs and rituals  and hopefully this will continue with adequate support from modern palliative care.