A question asked of me frequently as Chaplain/Spiritual Care Lead is how to open conversations with patients about spirituality. One of the reasons for this is the uncertainty staff have because they do not practice a belief system, or consider spirituality particularly important to them. Another reason is the concern that talking about spirituality will open a Pandora’s Box that is unmanageable and which cannot be silenced once opened. Holistic care means that we must all remain open to ‘person-centred, quality care that is not afraid to deal in the intimate, ambiguous, transcendent stuff of human being.’
A narrative is a story, usually told in the first person. It is a way in which information is given from one person to another that can be intensely personal, and, which might stretch through an entire lifespan. In the palliative context, a narrative is a story which inevitably concludes with illness and facing death. Hearing a patient’s narrative as a means to understand the person with disease, there is the opportunity to offer genuinely holistic care which encompasses all the professions of palliative care.
I recall one morning calling to see Frank, who had been admitted the late the previous week. One of the ward staff suggested that he might like to attend that day’s Communion Service. When I entered Frank’s room he was welcoming and immediately told me he wanted me to contact ‘the new lady vicar’ who had recently been appointed at his local church. His reason for this was to make funeral arrangements. I agreed to make the contact and Frank then began to talk about his family; his wife and two adult, married children. He expressed concern about his son who had recently moved with his family to a new job. I decided to ask Frank if he wanted to come to the service. He immediately said ‘no’. However, he wanted me to return after the service to talk.
About 2 hours later, I returned to Frank. I had the chalice and paten with me that I take to patients when I give Communion in a patient’s room. Almost before I sat down, Frank reminded me of his request to see the ‘new lady vicar’. He then talked more about his family life, his work and how he felt that now, with a malignant disease in his early 80’s life was almost overwhelming and dying was something that he felt would come soon.
After we had talked for a while I asked Frank if he would like to have Communion there and then. He agreed and so we shared in a short liturgy together and I then gave him Communion. Immediately, Frank began to sob. His shoulders heaving with the distress he was expressing. I was shocked that I might have upset him, but sat down and waited for his crying to calm. Eventually, some two or three minutes later, Frank had composed himself sufficiently to tell me that the church with the ‘new lady vicar’ had been his parish church for his entire life. At the age of 15 or 16 he had been confirmed there and his mother had then made him promise ‘not to abandon the church’. Frank spoke movingly of how he felt he had not honoured his mother’s request and how making his own funeral arrangement was a means of making a connection with the church.
Over the few weeks he was an inpatient on the hospice ward; Frank regularly received Communion and met the lady vicar to make his plans. His narrative was one which encompassed his entire life and in knowing something of his family concerns, his sense of letting his mother down and his wish to talk about his funeral, the whole ward, through multi-professional ward meetings was able to learn more about the whole of Frank’s needs.
Narrative is a helpful tool in understanding something of those with whom palliative care professionals and volunteers work. A narrative is a very personal story in the context of dying, but without it, we are unable to really understand what meaning life has had, and continues to have for the individual and family.
Robert Neimeyer describes human beings as ‘inveterate meaning makers’, offering a clue to why narrative is a useful tool to assess spirituality. Throughout life, each of us makes sense of events and experiences by weaving these into our personal story. Often, we can do this easily; sometimes, when an event seems catastrophic it can take time to integrate that particular event into an on-going narrative. Recent bereavement theories have noted that continuing bonds take time to develop during bereavement. Klass et al stated ‘the deceased are both present and not present at the same time. It is possible to be bereft and not bereft simultaneously, to have a sense of continuity and yet to know that nothing will ever be the same.’This is a good example of how the narrative of a bereaved person changes. The death of a loved one is a catastrophe and it is a process to integrate the death into a continuing life story. Neimeyer suggested that people place episodes from their life story ‘within a broader framework of meaning that makes them both intelligible and significant. The result of this evolving effort is a self-narrative.’
In Frank’s case, he was worried about his family, particularly his son, in the present. Frank was unable to influence anything that might happen to him and so his conversation about his son was almost raw with concern. He had not integrated anything of the recent move of his son and his family to another part of the country. The events of 60 years after his confirmation had been weaved into his life-meaning and, perhaps until the moment of sharing Communion, almost forgotten. Somehow, taking the bread and wine had rekindled a deeply held memory which evoked considerable emotion.
To assess a patient holistically requires time and the willingness to open up the life story to more than recent events, or journey of the present disease. I would argue that it is only in listening to the whole of a person’s narrative that we can truly meet needs holistically. Once we ‘know’ a patient we might be able to think about the right people who could work with that person, art or music therapist, social worker or psychologist, complementary therapist, chaplain. Each of those professions is then able to offer into a multi-disciplinary meeting more about that person’s narrative. Assessing a person’s spiritual need in this can overcome professionals working in silos where only one perspective is heard.
The NICE publication Holistic Support – Spiritual and Religious, states that people should be offered appropriate spiritual and religious support towards the end of life, by referring patients to in-house spiritual care providers, or faith leaders in community settings. But spiritual care is provided by each person who has contact with a patient. In the first instance, it may not be a chaplain or spiritual care provider who meets the individual, but a doctor or nurse and using narrative – story – as a means to understand the patient and their present needs is a helpful way to offer the most appropriate holistic care and enable the best quality of life at the end of life for the patient and those important to the patient.