Many people who are confronted with illness begin to ask themselves questions. When the disease is life threatening, the questions can be life size. ‘What did I do to deserve this?' ‘What did I do wrong?' ‘Why do I have to suffer?' ‘Why should I go on living?' ‘Am I not just a burden for others?' Such life issues or vital questions can be called spiritual or existential questions. They represent the big questions in life to which many people seek answers in their life view or religion. Anyone who works in palliative care will sooner or later encounter such questions. Sometimes the questions are posed literally; sometimes a person's search for meaning and purpose will appear in stories or in subtle comments. How can one respond? What can one do by oneself and when is it wise to call upon colleagues from other disciplines?
The present guideline has been written primarily for doctors and nurses, without the intention of excluding care providers from other disciplines or volunteers. All those involved with the physical and psychosocial welfare of patients need to know about the existential questions that are involved. To determine appropriate care and treatment, it is important to know what it is that lends meaning and purpose to the lives of the persons concerned.
First of all the guideline provides assistance by enabling one to distinguish between:
A. situations in which ordinaryattention to life issues is sufficient,
B. situations in which patients need counseling on life issues or experience normal struggles for which counseling by an expert may be beneficial, and
C. situations where the struggle with life issues leads to an existential crisis requiring a crisis intervention by a healthcare chaplain1, a medical social worker, or a psychologist.
In the second place the guideline offers some practical directives for providing good care in the various situations.
The guideline is structured as follows. First, an explanation is provided of characteristic features of life issues2 and of the terminology that is employed in such matters. Secondly an indication is given of how often such questions, struggle and crisis occur. Then recommendations follow for diagnostics, providing advice and treatment. The threefold distinction between normal care, special needs and crisis situations is employed throughout the guideline.
We chose the term ‘spirituality' in the name of the guideline to refer to the field of life issues. In that way the guidline is in accordance with the definition of the World Health Organization (WHO) for palliative care, which speaks of attention for needs of a physical, psychosocial, and spiritual nature.
Fig. 1. The position of spirituality
Visual representation of the relation between the spiritual dimension and the physical, psychological, and social dimensions of human existence. The spiritual dimension is depicted as the most intimate and concealed dimension: less measurable than the other three, but continually in a relationship of reciprocal influence with them.
Spiritual care as a component of palliative care is also important for those near to the patient. The approaching death of a loved one can evoke spiritual questions for them as well. In addition the spiritual process of those near to the patient can be connected to (anticipatory) grief.
1Translator's note: A more or less literal translation of the Dutch 'geestelijk verzorger' would be 'spiritual caregiver'. In Dutch the term refers only to a spiritual care specialist (chaplain) to be distinguished from other professionals who might be spiritual care providers (Dutch: 'zorgverleners'). In accordance with recent English literature on palliative care, the authors prefer 'healthcare chaplain' as a translation for ‘geestelijk verzorger'. (Handzo, 2011, page 266). 2Translator's note: ‘Life issues' is a translation of the Dutch ‘levensvragen' (literally: life questions) which in this context bears the connotation of questions about life and death.