Palliative care and spirituality
Correspondence Address: DOI: 10.4103/0973-1075.38897
Critical junctures in patients' lives such as chronic illnesses and advanced diseases may leave the persons in a state of imbalance or disharmony of body, mind and spirit. With regard to spirituality and healing, there is a consensus in literature about the influence of spirituality on recovery and the ability to cope with and adjust to the varying and demanding states of health and illness. Empirical evidence suggests that spiritual support may act as an adjunct to the palliative care of those facing advanced diseases and end of life. In this article, the author draws from his empirical work on spirituality and culture to develop a discourse on palliative care and spirituality in both secular and non-secular settings. In doing so, this paper offers some understanding into the concept of spirituality, spiritual needs and spiritual care interventions in palliative care in terms of empirical evidence. Responding to spiritual needs could be challenging, but at the same time it could be rewarding to both healthcare practitioner (HCP) and patient in that they may experience spiritual growth and development. Patients may derive great health benefits with improvements in their quality of life, resolutions and meaning and purpose in life. It is hoped that the strategies for spiritual support outlined in this paper serve as practical guidelines to HCPs for development of palliative care in South Asia.
Keywords: Hope fostering strategies, palliative care, spiritual history/assessment, spiritual needs, spiritual support, spirituality
Advanced diseases and chronic illnesses may leave a person in a state of imbalance or disharmony of mind, body and spirit. The affected person's adaptation to his/her illness may mean new resolutions, losses to be acknowledged, and redefinition of roles and expectations. This paper offers some understanding into the concept of spirituality, spiritual needs and spiritual care interventions in palliative care in terms of empirical evidence. Healthcare practitioners (HCPs) may adopt some of the strategies that the author has developed in light of empirical research into spirituality, culture and healthcare education. For the purpose of this paper, the term HCPs refers to medical practitioners, nurses, paramedical staff, medical and physician assistants and other health carers involved in palliative care.
Spirituality is often described in a language rich in metaphors and linguistic patterns characteristic of the influences of culture, philosophy, religion and history. Recently, health-related literature has begun to highlight spirituality and its importance in health and illness. In this article, spirituality is described as a dimension of being human, which gives individuals a sense of being, with qualities that include innateness,  a capacity for inner knowing and a source of strength,  subjective experience of the sacred,  self-transcendence toward a capacity for greater love and knowledge,  a unity or wholeness permeating all of one's life  and provision of meaning of one's existence that lies at the core of one's being.
Furthermore, in developing a discourse on spirituality, scholars appear to converge upon the points that humans are seen as spiritual beings and acknowledge the connection between spirituality and healing. With regard to humans as spiritual beings, Fry  states, "spirituality is a profound and central aspect of the existence of many people". This naturally leads to the claim that spirituality and palliative care are intertwined in the lived experience of people in terms of HCP-patient interactions.  With regard to spirituality and healing, there is a consensus in literature about the influence of spirituality on recovery and the ability to cope with and adjust to the varying and demanding states of health and illness. ,,,,
Literature on health and nursing places an emphasis on spirituality. From a holistic perspective, such literature describes spirituality or spiritual life in the terms listed in [Table - 1]. Carson  offers a useful definition of spirituality: "... is my being, my inner person. It is who I am, Unique and Alive. It is expressed through my body, my thinking, my feelings, my judgements and my creativity. My spirituality motivates me to choose meaningful relationships and pursuits".
Although spirituality is the essence of our being, its depth and intensity vary between individuals. There is ambiguity between the terms spirituality and religion, because the concept of spirituality is often conflated with religion. The distinctness of these concepts has been acknowledged in literature. However, Cohen et al.  suggest that the religious dimension may be one component of spirituality. All the major religions, namely Hinduism, Christianity, Islam and Judaism, rely on their faiths when healing is required.  For Hindus, their religion gives them equanimity of mind in prosperity and adversity and their spirituality gives them the courage to face problems of life.  Swami Nikhilananda states that, if you scratch a modern Hindu, you will find him or her religious in spite of the veneer of secular upbringing and education. It is worth noting that Buddhism, an offshoot of Hinduism, has influenced the spiritual culture of Sri Lanka, Tibet, China, Japan, Korea, Thailand and many other countries of Asia. Likewise, Islam is the dominant religion in South Asian countries like Indonesia, Malaysia and Borneo. Christianity and its various denominations are followed by many Asians. Critical junctures such as chronic illnesses and other crises compel some individuals to turn to organised religion and seek comfort in its tenets and traditions. For some, it seems that religion can be a source of support in terms of "hope and guidance in enabling individuals to examine their spirituality, define their purpose in life and connect with a community". 
Palliative care is described as active total care designed to meet psychosocial, physical and spiritual needs. The World Health Organisation  defines palliative care as, "the active total care, by a multi-professional team, of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families." (p. 1)
Twycross states,  "Palliative care integrates psychological, social and spiritual aspects of care so that patients may come to terms with their own death as fully and constructively as they can."
According to O'Brien,  "Palliative care focuses on the immediate quality rather than length of life  and integrates physical, psychosocial and spiritual care in its therapeutic plan." 
This paper is guided by the above definitions and descriptions in the subsequent discourses on palliative care and spirituality.
Researchers have found spirituality to be a powerful resource for coping with health-related problems, including chronic illnesses/advanced diseases. Yates et al.  found that religion acts as an important source of support for many patients. Baldree et al.  assessed the methods of coping adopted by 35 haemodialysis patients and found that hope, prayer and trust in God were prominent coping mechanisms. In another study, Miller  found that arthritis patients reported a significantly higher level of religious well-being, defined as a sense of well-being in relation to God. Likewise, Johnson and Spilka  found that prayer and faith were extremely important resources for the majority of cancer patients who participated in their study.
In a study of spirituality and illness, Fernsler et al.  found that people with colorectal cancer in the sample who reported higher levels of spiritual well-being indicated significantly lower demands of illness (DOI) related to physical symptoms, monitoring symptoms and treatment issues. In the light of their findings, these researchers suggest that a greater degree of spiritual well-being may help to mitigate the DOI as a consequence of colorectal cancer.
In a focused study of spirituality and bone marrow transplantation, Cohen et al.  found that, through personal stories, participants sought opportunities for reflections including adjustment to loss and resolutions. However, although the discourse on spirituality with regard to bone marrow transplantation is confined to one participant as a paradigm, it provides illuminative accounts. Spirituality and spiritual support from HCPs appear to have been instrumental to the adjustment and resolutions achieved by patients.
Much of the above research findings provide a North American or UK focus. Although these developments are encouraging, there is a problem in applying the above findings to South-east Asian healthcare practice as the context and nature of suffering in chronic illnesses may be different from that (as may the experience of lived spirituality). Furthermore, many of these studies involve quantitative methods investigating correlations between spiritual factors and outcomes leading to adjustment to illness. Such measures may fail to capture the lived experiences of patients suffering from chronic illnesses. However, this author's qualitative study  illuminates some of the coping mechanisms of patients with chronic illnesses in multi-ethnic setting in the UK. The findings suggest that patients may benefit from healthcare interventions that are sensitive, supportive and responsive to their spiritual needs. These needs include religious faith, prayer, search for meaning and purpose, respect for privacy with regard to spiritual practices and personal and social sources of support during chronic illnesses. This UK study offers a theoretical framework for further research into spirituality and palliative care in a multi-ethnic and faith setting. Clearly, further research is needed to establish the general pattern related to spiritual coping mechanisms in a wider context. In the subsequent sections of this paper, the author draws largely from his empirical work to suggest strategies for spiritual support for palliative care.
Terminal illnesses challenge all aspects of the person. Those requiring palliative care may have physical, psychosocial and spiritual needs [Table - 2]. Although the suggested strategies are derived from Judeo-Christian perspectives to some extent, much of the discourse in this paper could be adapted to secular and non-secular contexts in South East Asia since the lived experience of chronic and end-of-life illnesses impact upon the sufferers' body, mind and spirit. A holistic approach to palliative care may help the sufferer to experience a harmonious balance between the body, mind and spirit. The spiritual dimensions of humanity are explored in the following.
A diverse range of definitions of spiritual needs is found in literature due to the influence of the belief systems and values of the various authors. , The theoretical perspectives of the present paper are derived from contemporary sources such as Cohen et al.,  Sherwood,  Narayanasamy,  Bradshaw,  Reed  and others. Such literature espouses that spiritual needs are characterised by normal expressions of a person's inner being that motivates the search for meaning in all experiences and a dynamic relationship with others, self and whatever the person values. Spiritual needs may be attained through faith, hope, love, trust, meaning and purpose, relationships, forgiveness, creativity and experiences. These qualities are important for our holistic well-being in terms of meaningful existence. Some people achieve these via religious beliefs and practices.  These have implications for palliative care, and HCPs need to respond to palliative care patients with sensitivity to their spiritual needs.
Patients facing advanced illnesses and end of life may experience a state of imbalance or disharmony of mind, body and spirit. Feelings of anger, sadness, guilt and anxiety are often common following a period of disorganisation and disruption. Despair and hopelessness may loom for patients and their families. In their struggle with the impact of illness, patients may feel separated from their usual support system. The patients' search for meaning in the disease may become apparent.
The patients' adaptation to their illnesses may mean new resolution, losses to be acknowledged and redefinition of roles and expectations. The illness not only has an impact upon the patients, but their families have to share its effects with them. Although individuals' reactions to illnesses differ, many people struggle as a result of the disharmony of mind, body and spirit. For some, this means further spiritual growth or decline. The impact of an illness on individuals compels them to turn in upon themselves and reconsider their lives (Tournier, 1974).  The illness becomes a spiritual encounter as well as a physical and emotional experience. Research into coping strategies suggests that many subjects in the study facing advanced diseases and end of life indicated that they gained strength from their spiritual life.  For some, the source of strength included a renewed faith in God, prayer, a sense of peace resulting from prayer and feeling God's love. Other strategies highlighted were meditation, receiving love and support from others, participating in church activities and a life review.
The following strategies derived from the author's previous work may enhance spiritual support for patients. The HCP could derive a holistic understanding of palliative care to patients through history-taking. , Spiritual history as part of the assessment may provide insights into what is significant to the person's meaning of life and purpose. Puchalski  adds: "The key element of the spiritual history is listening to what is important to the patient and being truly present to the patient. This is at root of compassionate care giving."
Healthcare assessment of spiritual needs entails the gathering of detailed information concerning patient's thoughts and feelings about meaning and purpose of life, love and relationship, trust, hope and strength, forgiveness, expressions of beliefs and values. However, assumptions or conclusions about spiritual needs on the basis of patients' religious status should be suspended as it has shown that others who may not necessarily claim adherence to a faith may have spiritual needs. It is imperative that HCPs remain sensitive to verbal and non-verbal cues from patients when carrying out spiritual assessment. These cues might indicate a need to talk about spiritual problems.
Assessment of the patients' physical functioning may also provide valuable information for understanding their spiritual component. Obvious considerations about patients such as their ability to see, hear and move are important factors that may later determine the relevance of certain interventions. In addition, the assessment data may serve as a useful purpose in determining the patient's thought patterns, content of speech, affect (mood), cultural orientation and social relationships. They may all provide the basis for identifying a need or planning appropriate care in conjunction with spiritual intervention.
The presence of religious literature, such as the Bhagavad Gita, Bible or Quran, gives an indication of the patient's concerns about spiritual matters. Objects of religious requisites such as pictures, badges, pins or articles of clothing symbolise the patient's spiritual expressions. A patient may keep a religious idol or deity to carry out his/her religious rituals. Schedules, as given by Narayanasamy,  may be used to carry out spiritual assessment by observations.
An observation of the ways in which the patient relates with 'significant others' (people close to him/her, friends and others who matter to him/her) may provide clues to his or her spiritual needs. The quality of interpersonal relationships can be ascertained. Does the patient welcome his/her visitors? Does their presence calms down the patient or causes distress? Does he or she get visitors from a church or religious community?
Observations comprising the above can lead to conclusions about patients' social support system. The social system could act as valuable social capital in enabling the patients to give and receive love. A lack of such support may deprive them of this need and leave them distressed. Patients who have faith in God may feel estranged if they were cut off from their support network. Observations of patients' environment and significant objects/symbols related to their religious practice may give evidence of their spirituality.
Furthermore, spiritual assessment includes attention to three factors: sense of meaning and purpose, means of forgiveness, and source of love and relationship. Observations and routine conversations with patients can lead to valuable information about each of these factors. Observations may include:
If the patients respond with anger, hostility and blame others, these behaviours suggest that they are unable to forgive themselves and show their consequent inability to tolerate anything that resembles criticism. Spiritual assessment should review the patients' ability to feel loved, valued and respected by others.
The material for this section has almost been exclusively drawn from the author's previous works and are described as under. Spiritual support should be given according to the indications of the individual, which may be unique and specific. The presence of active spiritual beliefs (in God or a 'higher being') and spiritual practices is a source of hope. These can enable patients to participate in specific practices, which include praying, enlisting the prayers of others, listening to spiritual music and spiritual programmes on the radio or television, religious activities; maintaining specific religious customs; and visiting members and leaders of their spiritual community.
Prayer and its effects on healing
Both popular media and serious discourses on spirituality and health exalt the healing power of prayer. While no one can provide absolute proof that prayer is totally responsible for healing, some healthcare professionals cite incidences of recovery that cannot be accounted for by other reasons. Indeed, there is a claim that, in instances where medicine fails, prayer leads to God who then takes over and heals. In other words, when medicine fails God takes over.
Prayer is widely acknowledged in both ancient and recent times as interventions for alleviating illnesses and promoting good health.  All the major religions, such as Christianity, Judaism, Islam and Hinduism, and other faiths use prayer as a means to communicate with God or deity. Every religion believes in prayer for healing and refers to it as 'prayer', while others call it 'cleansing the mind'. Prayer as an act or practice may vary, but in crisis every religion uses it as recourse to its source of authority. According to Koenig,  prayers in terms of personal worship and devotion allow the body to heal naturally. Prayer appears to trigger mechanisms for counteracting stress and promoting positive emotions by releasing body's natural capacity for healing. It seems to activate the immune, hormonal and cardiovascular systems to heal disease, illness or injury.
Scientific experiments are being conducted to gain insights into these mind-body mechanisms that are activated by prayer. There has been proliferation of research since the late 20 th century charting the negative effects of depression, psychological stress and social isolation on immune function, coronary artery disease, cancer survival and other disease outcomes.  Benson and Stark  claim that prayer evokes physiological responses, such as decreased heart rate, decreased blood pressure and decreased episodes of angina in cardiology patients. According to Meisenhelder and Chandler,  prayer may induce stress-reducing effects such as decreased blood pressure or increased immune function. Koenig and Larson  confirm that there is an association between religious involvement and fewer hospitalizations and shorter hospital stays. In light of the positive link between religious activities and health benefit, experts in spirituality and health assert that people of faith rely on prayer to make the supernatural possible. However, research evidence is inconclusive on the healing effects of prayer. The mysterious nature of prayer remains elusive to the bounds of scientific experiments. However, healing is more than cure in that sometimes healing of the mind and spirit could happen without physical healing.
If patients belong to a temple, church, mosque, synagogue or religious group and its effect on them appears positive, the caring team can strengthen this contact. A patient who is accustomed to practices such as meditating, praying or reading the Bible or other religious books should be given time and privacy. A visit by a religious agent (temple priest, imam, pastor or rabbi) can be arranged. For example, in a UK study, a nurse responded to a patient's spiritual needs by initiating religious care interventions:
"The nursing team recognised that at the late stage of patient's life he became very aggressive and hostile. His relatives felt that this was due to lack of attention to his spiritual needs and they admitted that the patient had been deeply religious until tragic events took over… It took time for the nursing team to sit with the family and patient to work out what was required, which led to eventual pastoral support." 
However, not all patients may express explicitly their spiritual/religious needs. In the same study, one nurse recounts how she addressed this need:
"The patient has put his religion as atheist. A well-travelled person, spoke five different languages and was in the navy. Most people would have described him as 'know it all type of person'. In a conversation he described about a local Catholic priest fleetingly. Last few days of his life, he was frightened and someone remembered the priest and I asked him, would he like me to contact the priest which he appreciated. The priest came and it turned out that the patient used to go to church a long time ago. I felt that the patient's need was to make peace with whatever he was frightened of. So, I tried to contact the priest, which took several phone calls and nearly all day to locate him. I eventually succeeded. The priest visited the patient several times and he [patient] took communion and the last rite too. It appeared to me that he found some inner peace through this." 
The healthcare practitioner shall encourage the patient to talk about spiritual beliefs and concerns, especially about how these relate to his/her illness. The caring team may need to help patients in their struggle and search for meaning and purpose in life. On the other hand, if the patient is trying to find a source of hope and strength, then it can be used in planning care.
The other aspects of support may include comfort, support, warmth, self-awareness, empathy, non-judgemental listening and understanding. All these measures are the essence of a therapeutic relationship. An empathetic listener can do much to support a person who is spiritually distressed by being available when needed. For those patients suffering from loneliness and expressing doubts, fears and feelings of alienation, the presence of an empathetic person may have a healing effect (Montgomery, 1991). 
For some patients, a powerful source of spiritual care and comfort can be prayer, scripture or other religious reading.  All these may alleviate spiritual distress. As explored earlier, prayers are a source of help to a patient to develop a feeling of oneness with universe or a better relationship with God, comfort the patient and help relieve spiritual distress.  A particular prayer could be selected according to the patient's own style of comfort and needs. Although health professionals may not belong to the same faith as the patient, they could still support the patient in carrying out his/her spiritual beliefs.
Meditation, both religious and secular, can play an important role in the provision of psychological and spiritual support. , It enables the patient to relax, clear the mind, achieve a feeling of oneness with a deity or the universe. Meditation also promotes acceptance of painful memories or decisions and gathers energy and hope that may help the patient to face spiritual distress. Music gives an inspirational and calming effect. A wide variety of religious, inspirational and secular music may spiritually uplift a patient.
Spiritual support is a highly skilful activity. It requires education and experience in spiritual support. Sufficient information is provided in this section to guide readers on spiritual support. It is imperative that the caring team observes the following during healthcare interventions:
If a member of the caring team feels incapable to respond to a particular situation of spiritual need, he or she should enlist the services of an appropriate individual.
Healthcare interventions should be based on action that reflects caring for the individual. There is no cure without caring. Caring signifies to the person that he or she is significant and is worth someone taking the trouble and concern. Caring requires actions of support and assistance in growing. It means a non-judgemental approach and showing sensitivity to the person's cultural values, physical preference and social needs. It demands an attitude of helping, sharing, nurturing and loving.
Hope is something one cannot easily give to another, but every effort can be made to support and encourage the hoping abilities of a patient. Healthcare professionals often are in ideal positions to foster or hinder hope. A caring relationship can be offered that permits, rather than stifles, the efforts of the patient to develop hope. HCPs can support the person who is testing his own beliefs or struggling with questions of fear and faith. Further encouragement can be given to the patients to talk about their fears. Helping patients to relive their memory is another way of facilitating hope. Memories of events when life's needs were met, when despair was overcome and when failure was defeated can all be used to encourage the patient to take a fresh view and face the future with confidence as part of spiritual recovery.
Herth  identifies hope-fostering strategies that could be used as part of spiritual care. This author defines hope-fostering strategies as "those sources that function to instill, support or restore hope by facilitating the hoping process in some way". See Box 1 for further strategies on fostering.
Evaluation is an activity that involves the process of making a judgement about outcomes of medical and healthcare interventions. According to Rousseau,  spiritual suffering is "complex and nebulous and often difficult to assess". Spiritual suffering may increasingly manifest as physical or psychological problems. 
As part of evaluation, the following questions may be helpful:
Spiritual integrity is a key indicator of psychological and spiritual support.  The person who has attained spiritual integrity, demonstrates this experience through a reality-based tranquility or peace or through the development of meaningful, purposeful behaviour and, displays a restored sense of integrity. O'Brien  comments that the measure of spiritual care should establish the degree to which 'spiritual pain' was relieved. Another view offered by Kim et al.  suggests spiritual care may be measured as the disruption in the 'life principle' was restored. The contents of patient's thoughts and feelings may also reflect spiritual growth through a greater understanding of life or an acceptance and creativity within a particular context.
In this paper, adequate exposition has been made with regard to the importance of spiritual support for patients receiving palliative care in both secular and non-secular settings. The evidence suggests that spiritual issues need to be considered and patients are supported to attain a better quality of life whilst facing chronic illness or end of life. It is hoped that readers of this article are guided toward maximising their role in spiritual support for their patients. Spiritual support for patients can be challenging, but at the same time it can be a rewarding experience for practitioners. Readers are welcome to contact the author to explore opportunities for international collaborations to furthering the discourse on palliative care and spirituality.
[Table - 1], [Table - 2]