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End of life spiritual needs in residential aged care

Bert watched with interest from his nursing home bed, as Fred in the bed opposite received regular visits from the chaplain. Homeless, very deaf, with no family, and now close to death, Fred seemed to show no meaningful response and Bert wondered why she bothered. Anne, the chaplain, would always try to chat with him, finishing her visit by praying loudly and unapologetically into Fred’s ear, including the ‘Our Father’. After witnessing one of these visits Bert summonsed his trusted nurse: ‘Would that chaplain come and see me?’ The nurse, a little perplexed, responded: ‘I can ask her, but you told me when you first came in here to put ‘nil’ for ‘religion’ and you had no need for a chaplain and didn’t want a funeral. ‘Well, a bloke can change his mind, can’t he?’ Bert responded. After several visits from the chaplain Bert asked for his details to be changed, signifying his desire for a funeral service in the chapel, conducted by Anne, followed by a Christian burial.

With no guidelines for spiritual care and no formal process for assessing a resident’s spirituality, Bert’s needs may have easily been overlooked. He would not have described himself as ‘spiritual’ and had he not observed the chaplain’s regular, comforting pastoral care and heard her words to Fred, he would have remained ignorant of the role. One may only speculate about his responses had he been offered a comprehensive spiritual assessment on admission, rather than merely checking which box to tick for ‘religion’. This is neither the time or place for a discussion on single or shared rooms; however, as a direct result of witnessing the chaplain’s care of Fred, Bert received regular pastoral care until his own death. Rather than his earlier request for ‘no fuss, no funeral, no formal farewells’ his life was celebrated by family, staff and others in a carefully planned funeral service in the nursing home chapel.

Spiritual assessment, it is now widely recognised, is not the sole prerogative of the chaplain or formal religious representative. It is certainly not confined to ticking boxes on an admission sheet. Comprehensive spiritual assessment is equally important as documenting a resident’s physical, psychological and emotional needs. Assessment is ongoing, noting that their spiritual needs may change as readily as their various physical symptoms.

In order to provide what some regard as discrete, specialised spiritual care, a nursing home would need the full-time presence of an appropriately qualified multi-faith chaplain, with the flexibility of calling on others from the community as required. This may be to equate spirituality with religion; the latter commonly needing a dedicated role. However, with the growth in knowledge, the plethora of definitions and descriptions, spirituality is becoming more widely accepted as part of holistic care, and not confined to the work of a chaplain or pastoral carer.

Acknowledging the value of spiritual care and incorporating it into holistic support means embracing a wider view of faith and culture and religion. It means recognising the need for comprehensive education and training for all staff about the meaning of spirituality and its rightful place within holistic care. As for physical, psychological and emotional care, this requires assessment, planning, implementing, assessing and documenting. Apart from recording a resident’s specific spiritual or religious beliefs and/or practices, such documentation may include a description of their isolation and loneliness, their fears and anxieties, their anger or frustration or their good humour and expressions of happiness. Spiritual care may assume increased emphasis and greater importance for a resident who is dying, and/or to their family. In the context of dementia, it may mean educating the family, well in advance, that dementia results in death; and end-of-life care demands as much attention as it would for a person dying of cancer.

In an increasingly secular age spirituality is often regarded as a purely private matter. ‘It’s my life and my death. It’s nobody else’s business!’ While not denying each person’s right to privacy, the nursing home environment also provides opportunity for shared grief and therapeutic support. Within such a richly diverse community, residents, families and staff may learn about other cultures and faiths, either by informal discussions, formal education sessions, and the ready availability of appropriate reading material, including information about end-stage dementia. Notwithstanding contemporary society’s plea for privacy, the communal benefits of open discussion deserve wide attention.

Management has the responsibility of setting the tone for spiritual care. What provision is made for this subject to be included in the nursing home’s mission statement and promotional material? What priority is given in the budget for employing appropriately qualified staff? What opportunities are given for research and the application of best practice? What emphasis is placed on spiritual care in formal reviews such as accreditation? What recognition is given to the richness and diversity of residents, including indigenous Australians and those from other cultures? What collaborative partnerships may be pursued, for example, with church or secular organisations interested in broadening the role of spirituality? Furthermore, when spirituality is subject to formal review, then standards such as ‘spiritual competency’ will assume greater importance as part of everyday nursing home life.

On the other hand, spirituality is all too readily consigned to a realm beyond ‘the real world’: the opposite of tangible or rational or physical. Consequently, it comes under suspicion as being untrustworthy or merely an option ‘for those who like that sort of thing’. If it cannot be weighed, measured or recorded, it is not worthy of consideration. When spirituality is given its rightful place in ‘the real world’ of human experience it opens the way to celebrate our shared humanity in all its richness and diversity.

In summary, spirituality is a basic human right. Those responsible for providing residential aged care have both a sober and creative opportunity to ensure effective spiritual care in ways that are meaningful to those in their care. Seen in this broader light, residents like Bert may be given more opportunities to discuss their spiritual needs both on admission and throughout their life in the nursing home. Residents with end stage dementia, like Fred, will take their rightful place within the community, offered spiritual care even in the absence of cognition and speech; their lives celebrated, and their deaths appropriately acknowledged.

Associate Professor Rosalie Hudson

University of Melboure & Charles Sturt University

Meaningful Ageing Australia Research Consultant