Spiritual care is a very important aspect when dealing with the support of children or adolescents living with life limiting, chronic and severe diseases. Even more, when they are journeying to the end of their lives, as in this last stage the existential suffering seems to be more apparent.
Why should we include spiritual care in the holistic approach of children suffering from life limiting conditions?
- It is well known that spirituality is an important human condition. In the last few years, the new scientific paradigms recognise that spirituality must be attended to and cared for.
- Research shows that spiritual variables add value to the emotional processes, like coping and acceptance.
- The need for spiritual care is included in the extended definition of the WHO Palliative Care Guidelines.
This article may not have the answers to the questions posed from young children and their families, however, it may offer some orientation to do what is not easy: sit beside the child, remain in that difficult role and actively listen to his or her questions and fears. We will not fail them by not having some of the answers. Not knowing the answers can be a place of fortitude in the relationship and perhaps even reassuring for the child or adolescent. It is our wish that by the end of this discussion on spirituality, the care of the “soul pain” will always be included and, even more, highlighted in the overall assistance of the dying child or adolescent.
We all have a spiritual dimension that is deeply personal and subjective. Spiritual needs, and sometimes religious ones, differ from one person to another, whether children or adults, and even between members of the same family. When confronted with the suffering of a dying child or teenager and his or her family, we too suffer and feel compassion, grief and helplessness. We would like to know all the answers to the questions, perhaps the same ones that the family has, such as: Why my child? Why our family? What is the meaning of life? What is the meaning of suffering? We may spend a lifetime trying to solve these puzzles. This is part of our mysterious spiritual life, which is common to all. That is why it is also important to include ourselves in these times of difficulties, be it doctors, patients or parents.
Religion can be part of Spirituality
Religion is a human activity system composed of beliefs and practices of a spiritual, existential or moral kind, about what is considered divine or sacred, both personal and collective. It helps people to connect with “their God”. We are all spiritual beings, but not all practise a religion.
Spirituality is a construct of thoughts, values, concepts, ideas, rituals and attitudes by which individuals lead their lives and contribute to building a society. It is through spirituality, and driven by the spirit, that we could seek meaning and purpose in our lives. While most scientific publications show that spirituality is what gives meaning to life, other authors, like Bert Hellinger tells us: “The meaning of life is life itself, nothing beyond. Life has meaning only when we face it as it is. Therefore, the meaning of life largely depends on what each person does with what he is given.”
The religious philosophy of Vedanta teaches that a human being’s real nature is divine, and that the main goal, the only real one of human life, is to develop and manifest this Divinity. Spirituality puts us in touch with our freedom and our destiny, enables us to find ourselves and to find, at the same time, openness to others, our fellow beings.
Some features of Spirituality in children and adolescents
- The expression of spirituality in children is dynamic, growing, changing, constantly nurturing from the lives of others –especially their family, and in addition conforms his or her personality.
- Children have a great “spiritual curiosity”, a high level of openness and interest in all spiritual matters.
- Spiritual care must be framed in relation to the child and family, with our presence and support throughout the process.
- Each child is unique and therefore there is no single model or school to help us in the spiritual care of the dying child.
- There is no room for rigidity and lack of flexibility when we offer spiritual care.
- Every seriously ill child will be, at some point, aware of what is happening, not only in his/her body but also in their inner world. They need company, active listening, and respect for their silence. We, carers, must wait for them to choose how and when to speak. Many times they do it symbolically, so we must be alert to find out what they mean.
Bluebond-Langner (1978) showed that “a terminally ill child almost never says what they know in a way that is easy to understand. But when you learn to listen and observe signals, you soon realise that the child knows the truth and this is often more than they can bear.”
Dom Henry and colleagues (2001), from a Hindu and Ayurvedic perspective, tell us that spirituality comes from the heart and therefore “Questions that come from the hearts of children can only find answers that come from the hearts of adults.” Children with life-threatening illnesses go through a long and painful process to discover what happens. In this process they assimilate, integrate, and synthesise a wealth of information from different sources. Each new stage of the disease increases their knowledge about it, while at the same time, gives them a greater ability to deal with the situation, especially in advanced stages – and is part of their anticipatory grief.
Bild Ruben says: “There is a natural ability in children close to death to understand what is happening to them through intuition and premonition. An increased perception allows the child to enhance the deductive capacity based on the data received from the environment. “
“… We must not generalise saying that all children develop precognitive skills, as premonition and intuition. What we have seen, in most of these children, is that the experience of dying works in two ways: by stimulating the perceptive capacity and facilitating the deductive activity.”
- Children are no less spiritual than adults in similar conditions, they have been seen to be well “equipped” for their spiritual journey, with a high level of consciousness of their spiritual needs, though they cannot always find the way to express themselves with words. So it is our responsibility to know how to make contact with their body language and their gaze, offering opportunities for expression through other creative ways.
- Regardless of age or stage of development, children can understand spiritual concepts, but how children express their spirituality is the key point. It is not when but how.
Practical Aspects of Spiritual Care
- When trying to understand spirituality and spiritual needs of others, it is necessary to know and assume one´s own. The difficult situation of having to stand by a child or adolescent during the end of their life could challenge our values, make us think about our own spirituality and might lead us to a deep reflection. It would certainly be a good opportunity to learn and grow.Spiritual care must meet the uniqueness of each child, accepting all beliefs and values as they come up. What is said and unsaid are valid expressions of who and where they are.
- Spiritual care requires a secure and sacred space, where children can express their suffering with the trust that they will be heard and respected.
- The spiritual carer should be at their bedside, sharing what is happening and dealing with the questions.
- The spiritual carer should accompany them using the images and language they use. Children of all ages can express their inner world through play, music, art and images. They can enjoy expanded states of consciousness as meditation, visualization, healing rituals, bowls sounds, etc.
- Carers ought to be open to receiving what the suffering children have to teach them. Our skill is to figure out their codes.
- They are to listen and answer the children’s real needs, and not what we believe them to be.
- Their knowledge of what is happening should never be underestimated. We might be surprised by the clarity of their thinking and the development of their views on abstract ideas, often ruthlessly practical!
- This is how many children and especially teenagers help us in the task of trying to understand their suffering.
Often, when we take care of a child at the end of life, we feel that there is an empty space, like a hole that we cannot fill; there is something that we cannot achieve. Perhaps this is an intimate and sacred space, the centre of his journey, his spirituality. A space we should only protect, being always present.
Dr Eulalia Lascar is a Pediatric Palliative Care Consultant and Head of the Palliative Care Unit at the Hospital de Niños Dr. Ricardo Gutiérrez in Buenos Aires, Argentina. You can correspond with her at: Cuidadospaliativos.email@example.com
“Suffering is not a question that demands an answer; it is not a problem that demands a solution; it is a mystery that demands a presence.”
Anonymous, quoted in Wyatt J. Matters of Life and Death, Leicester-1998
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