9 Spiritual care

The word ‘spirit’ is widely used in our culture. Politicians speak about the ‘spirit’ of their party, veterans talk about the war-time ‘spirit’; religious people discuss the ‘spirit’ as that part of human being that survives death, whereas humanists might regard the human ‘spirit’ as an individual’s essential, but non-religious, life force. Related words are equally common and diverse: footballers describe their team as a spiritual home; there are spiritual healers, spiritual life coaches, spiritual directors, spiritual music, spiritual art, and spiritually revitalizing beauty care products.

Increasingly, the terms ‘spirit’, ‘spiritual’ and ‘spirituality’ are used by healthcare professionals. But these complex words need to be used with care and understanding. Their origins are essentially theological and/or philosophical and as such their primary meanings denote technical theological and philosophical ideas. However, they have also developed more commonly used secondary or derived meanings, and it is these that connote some of the more popular understandings.

A number of studies report reduced mortality rates among religious and spiritual people. One US study found those attending religious services weekly were:

The root of ‘spirit’ is breath (Latin: spiritus) and it is easy to imagine how it became associated with the idea of life essence: when an ancient died their breath (spiritus) departed them.

In the West, spirit is the third component of human being, alongside body and soul. (With Descartes ‘soul’ becomes ‘mind’.)

May God himself, the God of peace, sanctify you through and through. May your whole spirit [pneuma], soul [psyché] and body [sõma] be kept blameless at the coming of our Lord Jesus Christ.

The New Testament, 1 Thessalonians 5:23

Eastern spiritual teachers shared similar interests, although their emphasis on consciousness led to their tendency to speak about ‘the self’, atman.

The separation of spirituality from the practices of modern, secular medicine is rooted in eighteenth century Enlightenment debates about the nature of science and religion. The success and subsequent dominance of scientific method has left little place for the non-material soul.

Freud’s hostility towards religion and mystical experience is taken as further support for rejecting language of the soul as anachronistic. However, in coining the name ‘psychoanalysis’, Freud made conscious reference to the myth of Eros and Psyche (the soul).

It was Freud’s emphasis on the soul that made his analysis different from others. What we think and feel about man’s soul—our own soul—is all important in Freud’s view.

Bruno Bettelheim⁴

Healthcare professionals need to be clear about the concepts they are using. And an effective definition is needed that can, for a contemporary context, make sense of the theological–philosophical roots of these ideas.

The humanistic-phenomenological definition of spirituality proposed by Elkins et al.⁵ is helpful insofar as it regards spirituality in very broad terms as ‘a way of being’:

In these terms, spirituality, as a way of being, is characterized by how one relates to:

Such a humanistic–phenomenological definition makes possible a much closer association of areas of thought and practice that have too long been kept separate and discrete. For this reason, psychotherapists and spiritual carers are beginning to speak of ‘psychospiritual care’—a care for the spirit that unites traditional pastoral care, the ‘cure of souls’, with psychotherapy, which ‘attends to the soul’.⁶

Most importantly, a humanistic–phenomenological definition of spirituality allows healthcare professionals, who may not be in any way religious, to be much clearer about spiritual care and their involvement in it.

In contemporary speech, ‘spirituality’ is increasingly used as a contrast to ‘religion’—usually in its institutional forms and often with the inference that that which is spiritual is more authentic than that which is religious.

The two orders are intimately related, but while it is possible to be authentically spiritual without being religious, it is difficult to be authentically religious without being spiritual. For this reason, religion can be viewed as one way in which people express their spirituality; but it is by no means the only way.

An individual’s spirituality is shaped by the culture in which they live. So, where the language, foods, dress, social structures and customs are shaped by religious beliefs and practices, say in Roman Catholic, Hindu or Muslim countries, spirituality will be expressed through those cultural forms; and effective spiritual care will aim to support the expression of those cultural/religious forms.

When Rajendra was admitted to the Hospice it was clear that his prognosis was very limited. His district nurse had asked that he be admitted to a side room because his family, who were devoutly Hindu, wanted to be able to fulfil their familial and spiritual responsibilities to him without upsetting other patients. The family were extremely attentive to his personal physical care and also to his religious requests.

Through the reading of the Hindu scriptures and the burning of incense Rajendra seemed to derive great comfort.

The Hospice was a Christian foundation, with strong links to the local churches and an active chaplaincy department, which visited Rajendra regularly at his request.

Several members of staff found the overt Hindu practices very distressing as they were concerned about demonic influences. A decision was taken that such members of staff would be assigned to different patients.

Several weeks after his death the family returned to say how much they had valued their last days together with Rajendra in the Hospice. They had been nervous when admission had been suggested because they had been aware of the Christian ethos of the Hospice.

They also shared how Rajendra’s greatest spiritual comfort and solace in his last days had come from the sense of love, care and acceptance he had received from hospice staff, particularly because in his business life as a shop owner, he had had to put up with a great deal of racial and religious harassment.

In secular Western cultures, where beliefs and values are transmitted in the home and/or the faith community, spirituality finds expression in a variety of forms, not necessarily religious. Again, effective spiritual care will understand that spiritual needs are none the less pressing for being non-religious.

Spirituality is also shaped by the individual’s life journey, the experiences they have and their encounters with others. In particular, being faced with one’s own mortality has a profound spiritual impact, which can fundamentally disturb long–held beliefs and values. This may not in itself be a bad thing, and patients may come to value the kind of freedom a changed perspective brings. However, the distress provoked by re-evaluating beliefs can be upsetting for carers, professionals and family alike, and a person experiencing the doubt, conflict and confusion that goes with the disintegration of existing belief, may need sensitive support in order to find a place of reintegration.

Equally, a life-threatening illness may reawaken dormant beliefs in those who have no particular affiliations with any faith group. But this reawakening may be sustaining or threatening depending on how the individual perceives it.

The assumption underpinning much literature on spirituality, i.e. that a terminal illness intensifies patients’ search for meaning, lacks empirical support. However, there is some research supporting anecdotal evidence that, in a terminal illness, what matters is not so much what a patient believes, but the strength of their beliefs.

It is important to remember that, in most cultures of the world, spirituality has a practical, social and material impact on people’s daily lives—it is the experience of Western culture that is exceptional.

Spirituality plays a vital role in the well-being of large numbers of British residents, and in a pluralistic culture many will value being able to express their spirituality through their religious and cultural traditions.

The complexion of British multicultural society is increasingly diverse, and it is very difficult for non-specialists to understand the nuances of faith traditions. Chaplains or Spiritual Care specialists are an important resource for addressing patients’ religious and cultural requirements, but the real experts will be the patients themselves and/or their faith community leaders/spiritual advisors.

Healthcare professionals should always consult the patient directly, or if this is impossible, the patient’s family, about their religious and cultural requirements. However, caution will be needed as, while some patients may identify belonging to a particular faith group, they may wish to deviate from what their family consider ‘orthodox’ practices.

It is normal for members of the spiritual care team to be able to meet the religious and cultural requirements (sacraments, etc.) of the majority of patients, and to act as a resource to the multidisciplinary team for advice on dietary and ethical issues.¹¹

It is important to remember that a patient’s frustrations with low energy levels during illness are likely to impact on their ability to follow the routine practices of their faith, which may in turn impact on their spiritual well-being. Religious disciplines are normally relaxed during ill health, for example, the fast during the Muslim holy month of Ramadan.

Around the period of death, faith practices can have particular value, underscoring the transition from life to death. These practices may help patients and relatives:

Saunders’ closely identified spirituality with the human search for meaning. Her approach to ‘spiritual pain’ has been influential:

Spiritual relates to a concern with ultimate issues and is often seen as a search for meaning.

Peter Speck¹³

The diagnosis of life-threatening disease has a profound effect on people who are ill and…questions relate to identity and self-worth as patients seek to find an ultimate meaning to their lives.

NICE Guidance on Cancer Services¹⁴

[A] number of themes echo through most discussions about spirituality. The link between human spirituality and existential questions about meaning and purpose seems to be at the heart of these themes.

Gillian White¹⁵

It is the health care professionals’ role to assist individuals to make sense and find meaning in times of crisis such as the acceptance of a terminal diagnosis.

Wilfred McSherry¹⁶, 2006

These assertions seem to be based on Saunders’ own conviction, which she draws from the existential psychotherapy of Viktor Frankl. This implies that terminal patients engage (at some level) in a conscious/intellectual process of meaning making. If so, this distorts how Frankl understood ‘spiritual’.

Frankl¹² saw the ‘spiritual’ as the defining mark of what it means to be human: ‘human existence is spiritual existence’. He regarded being human as being ‘existentially responsible, responsible for one’s own existence’, and argued that the search for meaning is the making of a response.

Spirituality, then, can be understood as an often unconscious response to the question posed by particular life crises: ‘How shall I live?’; ‘How will I be in this situation?’; ‘How will I face my dying?’

Because spiritual pain causes patients to suffer, and because palliative care is about the relief of suffering, spiritual pain is often taken as something that healthcare professionals must strive to relieve.

McSherry¹⁸ borrows an expression from St John of the Cross, a sixteenth century Spanish mystic, to describe spiritual pain as ‘the dark night of the soul’. But McSherry misrepresents the idea in terms of spiritual search and confusion. Yet the sense of crisis that often accompanies ‘the dark night’ is not necessarily pathological. Spiritual pain can be the pain associated with spiritual growth, and may:

This is not the old theological idea that humans are sinful and that, therefore, suffering is necessary and good; rather, it develops Saunders’ idea that: ‘The last part of life may have an importance out of all proportion to its length.’

Spiritual pain can be thought of as the pain of growth associated with the patient’s struggle to respond to the question: How shall I be—with my self, with others, in the world, nature, and towards the Ultimate—when I am facing my own death?

However many dying people I’ve known, this person is dying for the first time and I don’t know what they need: everyone has different needs. You must hold your previous experience of dying patterns very lightly… Death reveals that life’s about change, so how can we hold to our fixed ideas?

Buddhist staff member of a US hospice

If this is the case, the spiritual pain of a patient poses a profound question to the healthcare professional: ‘How will I respond to the patient in front of me?’ ‘Will I be their…’:

‘Or will I simply be with them as another human being who has a particular set of knowledge and skills that might be of some help?’

I couldn’t bring rule books about how to be with dying people. When I walked into a room with a person who was dying, there was just the person and me and here we are. And if I’m full of hiding in roles and identities I cut myself off from them and they’re left alone, which is the hardest way to die.

Ram Dass¹⁹

Those who care for a dying person also experience spiritual pain. When circumstances force a carer to live incongruously the experience can be profoundly disturbing.

For some time Maureen had been planning a foreign holiday. Caring non-stop for six months, she was feeling in real need of her break. However, her first husband had died while she was away and she feared the same would happen again. Nonetheless, she was determined that she had to go.

When her husband had been admitted to the hospice and was expected not to have long to live, Maureen’s immediate question had been, ‘Will I still be able to get away?’ She felt guilty and embarrassed that her first thoughts had been of herself.

In her carers group she talked about guilt and responsibility, and about what long-term caring for a dying person does to the carer. Maureen spoke about wanting the best for her husband, but felt she needed an end to her stress. The seemingly endless experience created emotions within her that made her think and feel in ways that were incongruent with how she would normally have expected to have thought and felt.

Maureen was being squeezed into a spiritually detrimental situation: living inauthentically against herself over an extended period.

Assessment has been defined as ‘the process of gathering, analyzing, and synthesizing salient data into a multidimensional formulation that provides the basis for action decisions’.²¹ There are two contrasting approaches to spiritual assessment:

Formalized assessment tools include sets of both quantitative and qualitative questions aimed at understanding the patient’s current spiritual needs. These may be based around the taking of a spiritual history.

A more intuitive approach to spiritual assessment is the use of interpersonal skills developed through reflective practice on ‘being with’ patients. This depends entirely on the particular experience, skill and personality of the spiritual assessor, and is rooted in the quality of the relationship between healthcare professional and patient.

The intuitive approach to spiritual assessment relies on careful listening to the stories patients tell about themselves and the particularities of the language they use.

Spiritual care is less about imparting specialist knowledge, be that of theology, philosophy or ritual practice, than it is about the ability to be genuinely present to another person during an episode of spiritual pain. Consequently, spiritual care is not the sole prerogative of paid specialists; any multidisciplinary team member can offer spiritual care. However, only those capable of what Walter calls ‘watch-with-me vulnerability’²⁴ actually do provide real spiritual care.

The ‘cure of souls’ (‘traditional’ spiritual care) and ‘soul attending’ (psychotherapy) are closely associated, and the skills of psychospiritual care are similar to those of counselling and psychotherapy:

When the client’s world is this clear to the therapist, and he moves about in it freely, then he can both communicate his understanding of what is clearly known to the client and can also voice meanings in the client’s experience of which the client is scarcely aware

Carl R. Rogers²⁶

Spiritual care, particularly of those facing their own death, demands the response of a wise and compassionate ‘spiritual friend’ (Celtic: Anam Cara). Not every member of the multidisciplinary team will be equipped to offer this level of spiritual care. But each one contributes to enabling patients to find a ‘way of being’ that will enable them to go through the experience of dying in the way appropriate to them.

The spirituality of those who care for the dying must be the spirituality of the companion, of the friend who walks alongside, helping, sharing and sometimes just sitting, empty handed, when one would rather run away. It is a spirituality of presence, of being alongside, watchful, available, of being there.

Sheila Cassidy