There is, unfortunately, a mistaken belief that spiritualityis all about a person’s relationship with the sacred, the divine or some higher being, and has little to do with the material world. For this reason spirituality has been erroneously linked with religion or is considered so esoteric that many in this post-modern world see no place for it. I hope the following reflection dispels some of the confusion and helps in your understanding of the status of spirituality within palliative care.

Spirituality is anything but esoteric or mysterious and is not, contrary to popular belief, linked ipso facto with religion. It addresses basic issues like who am I, what is the meaning or purpose of my life, and who are the important people in my life? A person’s religious orientation may influence their response to these core questions, but no more than the values they live by, their culture, their life experiences and their stage of life. What is important is that the absence of any religious conviction does not negate this form of inquiry nor make the inquiry less relevant. The questions are pertinent to everyone, and while they may not rank high on a person’s list of priorities, they inevitably come to the fore with increasing age, during times of crisis and when someone is confronted by the reality of impending death.

The early and middle years of a person’s life are generally orientated towards security and consolidation. The focus is well and truly on the outer or material world. At some later stage, particularly with infirmity or in times of illness, the tendency is to focus more on one’s inner life. Indian culture refers to this latter period as the ‘years of wisdom’ or Sannyasa – the time a person prepares for death. Ken Wilber offers an existential perspective on these stages of adult development and says, “Spirit first throws itself outward to get lost in the [material] world and then begins the slow and tortuous return to Itself, finally to awaken as Itself”.

Why this inquiry is left to the 11th hour is intriguing. According to Pierette Stukes, the majority of the population lead, what she calls, an outside-in existence whereidentity, meaning and purpose are derived from our roles, our successes, our failures and what others think of us. When faced with a crisis or increasing age, the outside-in orientation loses its appeal and the search for meaning becomes more important. A shift away from this worldly (outside-in) orientation to an inside-out perspective occurs when, according to Stukes, we seek to know and express our true self. This is often the start of a person’s spiritual journey and, metaphorically speaking, it involves shedding materialistic longings in favour of a reflective life. This transition is not without pain. In the palliative care situation it involves a letting go of unrealistic hopes and surrendering to the unknown. Such a quantum shift is only possible if family and health care workers respect and support the seeker as they struggle to come to terms with their changing world.

The process of opening to and exploring our spirituality is often referred to as a spiritual journey. In the context of palliative care this journey is anything but smooth. There are numerous twists and turns and countless bumps along the way. Pain and soul-searching are part of the territory. John O’Donohue suggests, “If there is such a thing as a spiritual journey it is ¼ inch long and several miles deep”. Suffering is intrinsic to this journey, but healing or peace in the face of death is possible if the suffering is confronted. Failure to do so ultimately leads to despair. In the words of Desmond Tutu, “Unless you look the beast in the eye it returns to hold you hostage”. For these reasons those who receive bad news or experience a life-changing event are in urgent need of spiritual care. They need someone who can journey with them as they confront the darkness and the ultimate realisation that the life they once knew is forever changed.

Stephen Levine, in his book Who Dies, says the death of the body is accompanied by much less pain than the death of self. This observation has been substantiated by many researchers including Russel Portenoy, a well-respected physician based in the USA. He found that spiritual, psychological or existential concerns were far more common and challenging than physical symptoms among those who were dying. What the dying want is help to overcome fear, particularly the fear of the unknown. The suffering associated with dying is not confined to the body; it is intensely personal and involves the whole person. Despite this, research into the care of the dying suggests we fail miserably with whole person care. One study involving more than one million hospitalised patients found that help to deal with fear, anxiety and despair was rarely realised. There are many reasons for this. The most common is that the person’s call for help goes unrecognised or is misinterpreted because of the metaphorical or symbolic language they are inclined to use. Other reasons include the low priority given to spiritual concerns, a fear of becoming ‘emotionally involved’ and/or getting out of one’s depth, a perceived lack of time and the belief that it is someone else’s ‘job’. This is not meant to suggest that those in the health care system lack compassion, but rather they are often lost and unsure about how to care for people in ‘pain’. Their focus is generally on outcomes and making things better: an outside-in orientation.

Christine Bryden – a remarkably insightful woman living with dementia – says spirituality lies at the centre of our being, and is what identifies us to be truly human. She goes on to say we discover this spiritual essence whenever we pause long enough to look beyond cognition, through our clouded emotions into what lies within. In this post-modern era there is little time to pause and this so-called spiritual essence lies in waiting until awoken, often quite abruptly, by illness, a life crisis or impending death. A small percentage of the population puts a high priority on introspection and devotes a portion of their life to the spiritual search, often through ritual, meditation, contemplation or prayer. Not infrequently, this sense of the spiritual essence may appear dramatically, albeit transiently, in what is commonly referred to as a ‘peak experience’. Such experiences have been described by women in childbirth, by people consumed by a beautiful sunrise/sunset or during times of musing. Peak experiences are sometimes referred to as times of ‘superconsciousness’ and have been credited as the source of inspiration for famous works of art, literature and music.

Although I have used the words existential and spiritual freely throughout this essay the spiritual journey is as much psychological as it is existential. This link between the psyche and the spiritual/existential is inseparable and the resolution to the ‘why’ questions is only possible if one deals with the emotions that account for the suffering – uncertainty, fear of impending death, the sense of dread or despair, paralysing anxiety, fear of the unknown, et cetera. Each person finds their own way through this maze and there is no set formula as to how this is done. Allowing a person to sit with their fear, their despair and their uncertainty is often the best course of action and usually more valuable than trying to make sense of the incomprehensible. Suffering is part of the spiritual journey and is an experience that has to be lived; it is not a problem that can be solved.

To be with someone as they make this journey is hard work. The qualities required of such a person was once described by Henri Nouwen as, “…the friend who can be silent with us in a moment of despair or confusion, who can stay with bereavement, who can tolerate not-knowing, not-curing, not-healing and face with us the reality of our powerlessness, that is the friend who cares”. The difficulty of being this healing presence in a system which prioritises, expects and rewards doing is immediately apparent. Fortunately there are people who are attuned to the needs of those who are dying and who do not seek to rescue or give advice. They are the ones who are prepared to listen. They correctly interpret the searching question, the subtle message or the pregnant pause to mean, “Can you hear my pain?” and willingly give of themselves and their time. Whoever that person may be – doctor, nurse, volunteer, pastoral care worker or cleaner – it is important to remember that they may, at some later time, need their own healing presence. Being with someone whose life is literally falling apart is hard work and to suggest otherwise would be misleading.

While members of the health care team are in the front line of spiritual care, patients will often choose a family member or friend to hear their pain. Unless prepared they too can be overwhelmed by the occasion and the responsibility. One of the roles of the health care team then is to prepare family for this; informing them that if the occasion should occur their only tasks are to sit, listen and be fully present (simple tasks in themselves, but surprisingly difficult to implement). They should also be encouraged to debrief with a trusted friend, relative or staff member immediately after.

As previously mentioned, it is more difficult for someone living an outside-in existence to be present for another who is looking inwards. This form of inquiry is unfamiliar for the person locked into a materialistic world as their focus is often on making things better or safe guarding their own uncertainty. I believe it is essential for those who work with the dying to adopt some form of reflective practice and to look at their own fears and agendas around death – to take an inside-out look at their life and their work. If we are liberated from our fears, says Nelson Mandela, our presence automatically liberates others.

Finally, while the spiritual journey for someone who is dying can be long and painful, there are occasions when healing is dramatic and unexpected. From my experience this change might be spontaneous and unexplained, but it may follow an inner ritual such as a profound dream or a so-called deathbed vision. It can also be part and parcel of art or music therapy, or indeed any ritual that silences a troubled mind. This includes prayer, meditation, quiet time, listening to music, poetry or a favourite reading, or even being in nature. Creating a healing environment through some form of ritual appropriate to that person’s beliefs and culture is a powerful but simple way to facilitate healing.

Written by Michael Barbato