In this presentation, Hari-dhama dasa discusses an important social issue for the Society: that of providing care for the terminally ill in the movement. Since Vaisnava hold very dear the hope of dying in the association of devotees and at a place of pilgrimage, ISKCON faces a challenging task in providing this facility and care for its members. The author argues that both spiritual care and medical care should be available to patients, be they in a secular hospice or in a religious institution. He goes on to present some possible methods of approach to both carers in ISKCON and the caring profession in general. The author is currently in the process of conducting further research into the needs for spiritual care specifically within the Vaisnava context.
As ISKCON looks toward the twenty-first century it will face increased demands both from its members and from those outside the movement to address its social, political and economic fabric, it will have to recognise and provide more for the spiritual needs of its members, and this will also have to include preparation and support for those facing old age and death. For a devotee to leave his or her body in the company of other Vaishnava devotees is considered the mercy of the Lord, and to depart from the body at a place of pilgrimage is the fulfilment of life on earth. As yet, death, dying and bereavement amongst devotees around the world have not reached proportions where ISKCON has had to provide facilities common to the Society at large. Providing for the devotee with a terminal illness, taking care of the elderly and dying within ISKCON, and providing professional facilities for those in need of spiritual care will need to be an important component of social development structure.
This paper is also addressed to lay and professional carers, advocating the need to include and develop spiritual care in their work if they are to provide holistic care to patients. Holistic care of the body, mind and spirit involves an appreciation of the term 'spirituality' and the knowledge of how to respond effectively to the spiritual needs of the individual. Vaishnavas will refer to the term ' spiritual' in a very specific sense; for them this refers to the eternal relationship between the individual and God, but for the purposes of this article the word will be used as understood in the western generic sense of the term.
As sentient beings, spirituality is a constitutional part of human life and for this reason, carers can not ignore the spiritual needs of patients in their care. Dying is more than a biological occurrence: it is a physical, social and spiritual event. The real challenge to the caring profession is the cultivation and expression of an increased quality of spirituality and spiritual care. Nurses, doctors and carers, due to their constant contact with the patient have a unique role when spiritual care presents itself at its most profound: when a person is preparing to face death. In those areas of the world where medical care has been shaped by sophisticated technologies and complicated health care delivery systems, efforts to humanise patient care are essential if the integrity of the human being is not to be obscured by the system. This is needed especially for individuals with chronic maladies, or those who are in the process of dying.
This paper will examine the need for ISKCON to provide professional care to the terminally ill who come to their centres for the sole purpose of passing their last days in the company of devotees. The following discussion of the responsibilities and training that professional carers should have are also applicable to those devotees that would like to enter, or are at present in the caring field. Issues raised in this article are intended to help in the formulation of a practical policy for taking care of the sick and dying in ISKCON's care.
Spirituality: what does it mean?
Spiritual care aims at bringing harmony and balance back into the life of a patient. Thus for a person to function as an integrated whole, the individual must experience harmony amongst mind, spirit and body. Spiritual care is therefore not restricted to patients with a terminal illness, but to all those who find themselves neglected in one or more aspect of their wholeness. This paper, however, will deal mainly with diagnosing and responding to the spiritual pain in patients.
The awareness and appreciation of a patient's individual spiritual orientation is essential to holistic care. Transcendence, or the striving for an existence apart from this world, is probably the most powerful way that one is restored to wholeness after an injury to their person, be it physical, emotional or spiritual. The sufferer is not isolated by pain, but is brought closer to a transcendental source of that meaning, and to the human community that shares these values. This paper will also address the diagnosing and response to spiritual pain as experienced by dying patients.
Spirituality and the carer
Spirituality is concerned with the transcendental, inspirational and existential way to live one's life, and this could also include, in a fundamental and profound sense, the individual in relation to God. An individual's perception of spirituality and their spiritual need are normally heightened as the individual confronts spiritual pain and ultimately faces death. A holistic approach to patient and individual care implies care for the body, mind and spirit. Spirituality is often mistakenly equated to, or used synonymously with, institutionalised religion, therefore for the purpose of this article M. E. O'Brien's definition will be used: he has defined spirituality very broadly as 'that which inspires in one the desire to transcend the realm of the material.' This definition is helpful as it is broad enough to include a religious understanding of the term, but yet is not specific to any one religion and allows for the inclusion of those that have a personal philosophy to the meaning of life.
The basis for determining the level of an individual's spiritual health or integrity can be ascertained in the following ways:
Spiritual integrity is present when the person experiences wholeness within the self, with other human beings and living entities, and in transcendence with God. Spiritual integrity is furthermore demonstrated through such acts that show love, hope, humility, trust and forgiveness towards others.
Spirituality is a quality that goes beyond religious affiliation. Spirituality inspires one to strive for inspirations, reverence, awe, meaning and purpose even in those who do not believe in a God-applying equally to the needs of believers and non-believers. Spiritual beliefs and practices permeate the life of a person, whether in health or illness. The influence of spirituality is manifested in our relationship with others, life styles and habits, required and prohibited behaviours, and the general frame during our spiritual development and growth. Religious affiliation may foster attention on, or hinder spiritual issues. We should understand that patients and family are in a vulnerable state when dealing with terminal illness, and it should be the needs of the patient that dictate the role of religious representatives and not vice versa.
How is spirituality expressed?
The expression of spirituality is shaped by the accepted practices and beliefs of a particular culture and this may be expressed in some cases by the practices and beliefs of an institutionalised religion. Spiritual needs are fulfilled through such avenues as prayers, rituals, religious communities and worship. The institution codifies and provides pathways for the expression of beliefs and values held by the person. It provides meaning to life, and sustains the person through personal hardships such as illness, pain and personal difficulties. It also provides an avenue for celebration when hardships are overcome.
Mystical experiences can also bring about a sense of peaceful calm and stability in the turmoil of those experiencing personal calamities. These experiences are often described as another reality and provide hope, faith in a future, and a sense of love and meaning to life. Here the physical and the emotional interact with the spiritual to change the focus in the person's life. Meaningful and purposeful work, or creative expression, is often an expression of spirituality. The person may feel a need to communicate experiences of feelings which relate to the ' other worldly' aspects of life.
Another manner in which the spirituality of the person may be recognised is through behaviour or feelings that convey an altered spiritual integrity. O'Brien has listed seven common human experiences under the general category of altered spiritual integrity. These experiences include spiritual pain, alienation, anxiety, guilt, anger, loss and despair. Let us examine spiritual pain, as this is an area of care in which both carer and sufferer find the greatest difficulty.
How can spiritual pain be recognised?
Spiritual pain can be defined as an individual's perception of hurt or suffering associated with that part of his or her person that seeks to transcend the realm of the material; it is manifested by a deep sense of hurt stemming from feelings of loss or separation from one's God or deity, a sense of personal inadequacy before God and humanity, or a lasting condition of loneliness of spirit. Kim et al defines spiritual pain as ' a disruption in the life principle that pervades a person's entire being and that integrates and transcends one's biological and psycho-social nature.' 
Although spiritual pain has achieved comparable recognition to physical and emotional pain in the care of patients with terminal disease, it is less well recognised in those who are not terminally ill. When comparing the assessment of spiritual pain to physical pain, there are few guidelines that can be utilised. It is mainly the lack of objective symptoms of spiritual pain that hinder the diagnostic process. On the other hand, friends and family may be a resource for eliciting suffering from a patient. As with physical pain, there are some patients who feel the need to suffer from spiritual pain for specific reasons. We must appreciate that for them pain is not a ' problem' in our sense of the word. Spiritual pain represents the agony of an unmet need, whether it is psychological, emotional, mental or physical. Dame Cecily Saunders, founder of the modern day hospice movement, writes: 'The realisation that life is likely to end soon may well give rise to feelings of the unfairness of what is happening, and at much of what as gone before, and above all a desolate feeling of meaninglessness. Here lies, I believe the essence of spiritual pain.'  This is echoed by the Austrian psychologist V. Frankl, that 'Man is not destroyed by suffering, he is destroyed by suffering without meaning.' 
Spiritual pain can be the result of an experience which completely shattered a previously held view of life for an individual, taking the meaning and focus out of their existence, leaving them desolate and helpless. This experience may be an illness, or an accident, or some catastrophic event in their life. During these traumatic events the individual's assumptions about life, trust and love, may be found to be misplaced, leaving them with nothing to hold onto for hope and security in the present and the foreseeable future. In these situations suicide often seems the only way out 'I feel empty and shattered' or 'There is nothing left for me' .
It is important to recognise that there is often a level of pain far deeper than the pain of a particular loss. That deeper pain is often associated with something totally destroyed at the centre of the individual's being. This 'something' can be described as the person's view of life, their relationship with God, a map or picture of what life is about for them, or the values and principles they hold dear in their lives. An individual's response to any event in life partly arises from the view of life that lies at his or her centre. It is because this shattering of a person's view of life leads to a loss of a sense of meaning to existence, that meaninglessness is often seen as the centre of spiritual pain. It is often expressed as 'Why?' or 'Why me?' Spiritual pain can also be recognised in the individual's perception of life. When this fundamental perception has been radically changed, impaired or broken by some event, spiritual pain is at its most profound; this is often expressed as, ' I can't see any meaning in anything' , 'Nothing adds up any more', or 'My world is in pieces and I am lost and lonely.'
The management of spiritual pain
Spiritual pain is managed not only by professionals, but more often through relationships amongst the individual and their friends and family. It is a normal human activity which takes place on various levels: anything from a hug, holding a hand, empathic listening, a prayer, a gift or even a massage, may be a valuable part of spiritual pain management.
Professionally, spiritual care could include therapy, counselling and medication. Whilst we care for the body and mind by means of medication we can treat the spirit by means of non-medication based therapy; this would include alternative and complementary therapies such as art therapy, acupuncture, homeopathy, reflexology, music therapy and so on, these should be combined with excellent inter-personal communication and counselling skills. Both the medication and non-medication approach work hand-in-hand towards the ultimate goal of spiritual care: providing quality of life when facing death. They are both parallel and complementary if need be. Carers should acknowledge that that they have a responsibility for the spiritual well-being of the patient, and should not avoid providing this level of care.
As we assess physical pain on a continuous basis, spiritual pain requires the same frequency of assessment; it is not just a matter of ticking a box on the patient's admission form that asks about their religious affiliation. As a lack of homeostasis may manifest itself as physical pain, spiritual pain also represents a lack of balance or adjustment to one's immediate self; (this would be the result of something that had happened very recently rather than from something in the patient's long-term personal history). Consequently, an evaluation of a patient's spiritual orientation seems appropriate in order to diagnose spiritual pain.
With spiritual pain one cannot simply point a finger to exactly where it hurts. Feifel stresses that it is not necessary to understand fully a patient's spiritual orientation when creating an environment to offer nurturing. However, studies have shown that carers are less than willing to provide such care. Those caring for the terminally ill complained that too much was being asked of their own spiritual orientation, with them being unwilling to provide this care as one of their functions.  It seems reasonable to conclude that some health professionals may be holding back this nurturing ability in order to be perceived as credible health care practitioners�offering 'spiritual care' may not be seen as part of their role. Yet, spiritual care need not trigger inferences of faith healing or hocus-pocus. The essence of spiritual care-giving is not administering religious doctrine or dogma, but the capacity to enter into the world of others and to respond with feeling.
This fundamental capacity involves touching another at a level that is deeper than ideological or doctrinal differences. In this capacity it is essential that carers are willing to address their own spiritual orientation in relation to the needs of their patients without influencing the patient's right to receive the type of spiritual support that they desire. Carers must examine their own personal belief system. Self examination will enable them to understand and empathise with the need of the patient on a spiritual level, Burnard supports this when he asks, ' If we do not clarify our own spiritual beliefs or lack of them, how can we help those in our care to clarify theirs?'  If carers fail to address their own spirituality and the meaning behind it, they will fail those who depend on us for making their passage through death less painful. It is the responsibility of those caring for the spiritually needy to add the spiritual dimension to their care, irrespective of being theistically, atheistically or agnostically inclined.
Carers can help by being with the person suffering spiritual pain and offering their support according to their capabilities. In this capacity it is important to avoid easy optimism: 'You'll be all right', hasty analysis of the situation (there may be deeper levels of pain than the obvious) or, too early affirmation or comfort (stopping the sufferer going deeper into the pain).
Another common mistake that carers make when dealing with patients is allowing their own anxieties to dictate their course of action. This is commonly manifested by talking unnecessarily (the best form of communication in some situations may be silence), or providing uninvited sharing of the carer's own experience (one should avoid saying, 'I understand', as this factually may not be the case). It is more important to be a good listener than someone who has all the answers for solving a patient's pain. Each person has to bear his or her own pain and find their own way through it; the carer can only be a support in this process, as Ainsworth-Smith and Speck write: 'we must all grieve our own grief so we must do our own dying, and face the possibility and reality of our own mortality, and others should enable us to do this in our own way.' 
During times of crises, a person or patient may have the resources of his or her own religion as a support. Nevertheless, I have found in my experience as a carer and counsellor that although religious faith may help people bear spiritual pain, it seldom takes it away. To help someone with religious needs we do not necessarily have to share that faith, but we can help by being more understanding and respectful toward their chosen faith and try and ensure that their religious needs are met. Spiritual care requires an understanding of the patient's unique philosophical or religious views. It requires respect and understanding for the patient's belief and practices even though they are different to those providing the care. In order to attain this level of understanding, the carer must establish rapport and trust which allows the patient to disclose those beliefs. The carer should also be willing to recognise limitations in their understanding of these beliefs and seek outside help as necessary.
Spiritual Needs: what is to be understood?
Spiritual needs can be broadly categorised as the need for meaning and purpose in life, the need for love and harmonious relationships with humans, living entities and God, the need for forgiveness, the need for a source of hope and strength, the need for trust, the need for expression of personal beliefs and values, and the need for spiritual practices, expression of an understanding of God and/or a deity and creation.
Meaning in the context of spirituality can be defined as the reason given to a particular life experience by the individual, bringing about a sense of purpose from their life and illness. There is evidence to suggest that patients struggle with finding a source of meaning and purpose in their lives. It is also suggested that people with a sense of meaning and purpose survive more readily in difficult circumstances. The experience of suffering can bring about meaning and purpose to our lives. It is interesting to note that there is a distinction between the religious and the apparently non-religious person in the way they approach spirituality. A non-religious person's spiritual needs are more often focused around themselves and others. The religious person experiences their spirituality more around their relationship with a deity or God. However, those who have strong religious convictions and sense of God, may still need encouragement to adapt to unexpected changes when they are facing death.
It is important for carers to understand the fundamental needs of individuals. The need for love and harmonious relationships go hand in hand with a need for meaning and purpose. Unconditional love is usually the prime requirement for a person suffering from spiritual pain. The symptoms of the need for unconditional love are self-pity, depression, insecurity, isolation and fear. Unconditional love transforms these symptoms into feelings of self-worth, joy, security, belonging, hope and courage.
One of the most effective processes that can release a patient from suffering is forgiveness, and carers can be part of this healing process by gently encouraging this process in an individual. Nothing clutters a life more than resentment, remorse and recrimination. These three emotional responses to life are based on anger, guilt and hostility. Untreated, these can manifest themselves in physical illness. When held in the mind and in the heart, they occupy a fearsome amount of space, colouring our perception of reality to an alarmingly large degree. Forgiveness allows the individual to neutralise the toxic emotional investment. The process of forgiveness requires the individual to examine the reasons for their negative emotions and to deal with them, thus freeing them from self-destructive emotions. The consequences of not forgiving are high. The person who carries anger and hate carries a toxic attitude of resentment into his or her relationships with others and ultimately themselves.
I have only touched upon some of the fundamental needs of individuals, and the ways in which carers can help those who are spiritually distressed. Suffice to say that the spiritually distressed person needs an environment that conveys this trust. Such an environment is one that demonstrates that carers make themselves accessible to others, both physically and emotionally. Trusting is the ability to place confidence in the trustworthiness of others and this is essential for spiritual health.
How is spiritual care administered?
Any interpretation of the word 'spiritual' can present confusion when discussed outside the framework of religion or beyond one's personal belief systems. Likewise, the concepts of spiritual care become even more elusive when a non-dogmatic approach to spirituality attempts to explain a dimension of health care that is provided by a variety of professional disciplines and lay people. The terms 'religious care' and 'spiritual care' are frequently used synonymously. Religious care can be spiritual care but spiritual care is not necessarily religious care. Out of the five types of pain: physical, psychological, social, emotional and spiritual, religious suffering comes under the last category.
From my work with dying patients in a hospice environment, I developed a typology of five religious preferences. It is interesting that the majority of these classifications are devoid of religious doctrine: atheism, metaphysics, personal religion, personal religion combined with institutional religion, and institutional religion alone. This separation of doctrine from religion, but not from personal faith, may serve as a first step in distinguishing religiosity from spiritual orientation.
How is spiritual care to be evaluated?
The patient, who experiences spiritual integrity and demonstrates this integrity through reality-based tranquillity or peace, or through the development of meaningful, purposeful behaviour, displays a restored sense of spiritual integrity. The overall evaluation of spiritual care should establish the degree to which spiritual pain was relieved. The patient's communication and interaction may also indicate spiritual growth through greater understanding of life or an acceptance and creativity within a particular situation.
Spiritual care enables carers to provide more holistic care for patients, as Cousins points out, ' Death and dying are not the ultimate tragedy of life. The ultimate tragedy of life is depersonalisation, separated from the spiritual nourishment . . .' The ability to address spiritual issues is no longer a matter of choice, but rather it is fundamental to providing holistic medical care to the terminally ill.
What is the role of the interdisciplinary team?
As hospice care attempts to provide holistic care to persons nearing the end of their life, there is a wide agreement that this care ought to include a dimension that is best described as 'spiritual'. Though few agree on the commonalties of the spiritual dimension, many caregivers in my experience profess ability and a satisfaction in providing such care.
The continued lack of clarity in understanding what is meant by 'spiritual care' however, prevents the development of meaningful criteria upon which to base a measurement. Inevitably, attitudes concerning the role of spiritual care rarely achieve conformity. If it is the aim of a hospice to provide holistic care, its potential to achieve this rests on the ability of caregivers to assist patients and families in finding hope and reconciliation during the last days of life. Carers need to be prepared for this role.
In delivering physical, psycho-social and spiritual patient care, caregivers must recognise their strengths and limitations. In Highfield and Cason's study of spiritual needs in cancer patients, it was reported that the only problems that the respondents confidently associated with a spiritual dimension were concerned with the meaning of suffering, death or God. The nurses' inability to distinguish spiritual problems from psycho-social ones led to inappropriate interventions that implied that the needs of these patients were not met. This data clearly demonstrates that carers must be trained to recognise the various types of care a patient will need-when facing terminal illness they cannot abdicate their responsibility to treat an individual's spiritual needs to the chaplain, any more than they can abdicate their responsibility for a patient's physical care to the physician. These requirements for a hospice nurse are not unrealistic, various studies have reported such as Amenta, (1984), Chariboga et al. (1983) and Vincent and Peace (1986), that hospice nurses tend to posses stronger beliefs in a life after death, and were frequently characterised as being more assertive, imaginative and independent than nurses working in more structured environments. 
What does this mean for ISKCON?
As ISKCON prepares to provide care for the terminally ill at major places of pilgrimage, such as Mayapura and Vrndavana, it would be useful for the Social Development Ministry, the Health and Welfare Ministry and the Ministry for Education to consider the issues raised in this article. An earlier attempt in 1995-6 to provide informal 'hospice care' for dying devotees in Vrndavan, India, accentuated the need for such specialised care to form part of our social development and health and welfare programmes. In the past devotees with a terminal diagnosis have been brought to Vrindavana, under the impression that they could comfortably prepare to spend their last days at this place of pilgrimage. However, those who were offering this care (with the best intentions) were unfortunately ill equipped both medically, psychologically and spiritually to deal with the many challenges a carer has to face when dealing with the inevitable trauma of death.
We as a Society need to examine our attitude towards the care that we need to provide the terminally ill in our midst. Our scriptures teach us that spiritual pain is ultimately a symptom of the individual's forgetfulness of, and subsequent separation from, God. Therefore, the Bhagavad-Gita and Srimad Bhagavatam recommend spiritual care as a process of devotional service to God, with chanting His names as the primary practice. We need to become more sensitive and better equipped to deal with the need of terminally ill devotees and more realistic in our care approach. A devotee who has come to a holy land to prepare for and face death may have spent many years preparing for this event through their spiritual practices, however, this does not necessarily mean they will be able to face death without the necessary medical, emotional and psychological support from suitably trained devotees. Experience shows me that it is imperative that, unless devotees are trained in palliative, terminal and hospice care, dying devotees are best cared for by medical professionals outside of ISKCON. This care can be provided in consultation and co-operation with the dying devotee's loved ones. Suitably trained devotees can be active in the capacity of pastoral support, together with friends and family.
To achieve these goals it would be prudent to introduce a training programme in palliative and spiritual care. Such a programme has the potential to empower devotees with the relevant qualifications to mindfully administer, help and support those devotees in need of spiritual care, living or dying. Until such an internal educational programme is set up, it would be wise for those devotees who wish to serve the Society by taking care of the dying, to take advantage of the training opportunities outside of ISKCON.
ISKCON already has a wealth of devotees trained, qualified and experienced in subjects directly and indirectly related to spiritual care. It would be a very useful resource if the various Ministries compile a database of devotees qualified and experienced in this field to bring their resources together. It is recommended that even these devotees broaden their existing knowledge base by gaining further education in palliative and terminal care.
ISKCON has already taken some steps in the right direction. There is a planned hospice and residential home in Vrndavana, India and concrete progress has been made with the founding of Bhaktivedanta Hospital in Mumbai, India. Holistic care, and this includes spiritual care, is embraced in the hospital's mission statement: ' With love and devotion we will offer everyone a modern, scientific, holistic health care service, based on true awareness and understanding of the needs of the body, mind and soul.' This project has confirmed plans for its own palliative care unit being set-up in co-operation with medical institutes in London, England and this is an encouraging sign that we are beginning to respond to the need for systematic and professional palliative and spiritual care in our Society.
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Philosophy', paper presented at the Sixth World Congress on the Care of The Terminally Ill. Montreal, 1986.
 Burnard, P., 'Searching for Meaning', Nursing Times, 84 (1988), pp. 34-37
 Ainsworth-Smith, A. & Speck, D., Letting Go, London: SPCK, 1982, pp. 47-51
 Unconditional love is a love that is given freely, without expecting anything in return. It is both unselfish and non-judgmental. Among Vaisnavas and members of ISKCON the epitomy of love is that between the Lord and His devotees.
 Dom, H.T., The Hospice as an Extended Provider or Post-Modern
Spirituality, M.Phil. dissertation, University of Cape Town, 1995
 Cousins, N., Anatomy of Illness, New York: Norton, 1979, pp. 78-82
 Addington-Hall, J. M. & McCarthy, M., 'Dying From Cancer: Results of a National Population-based Investigation', Palliative Medicine, 9 (1995), pp. 95-305
 Highfield, M. & Cason, C., 'Spiritual Needs of Patients: Are They Recognised?', Cancer Nursing, 6 (1983), pp.187-92
 Fallon, Marie & O'Neill, Bill (eds.) ABC of Pallitive Care, London: BJM Books, 1998, p. 63
 See the following references:
-Bhaktivedantat Swami, A. C., Srimad Bhagavatam, Los Angeles, CA: Bhaktivedanta Book Trust, 1994, 6.3.22;
-Bhaktivedanta Swami, A. C., Bhagavad-gita, Los Angeles, CA: Bhaktivedanta Book Trust, 1994, 8.13