It is now generally accepted that spirituality is an integral part of health and not merely an influence on it1, with even the World Health Organisation defining health as ‘a dynamic state of complete physical, mental, spiritual and social well-being and not merely the absence of disease or infirmity’.2 This spiritual dimension is now recognised in the field of management theory as making a profound contribution to personal and organisational transformation,3 a concept also understood in education, nursing and social welfare.4 Even government agencies such as the US Department of Health’s Center for Disease Control and Prevention are now developing ways to ‘champion a focus on wellness that acknowledges the roles of mental health, spirituality, and complementary and alternative medicine across the lifespan’.5
People being cared for share deep-seated human emotional and spiritual needs, regardless of whether they are religious. Existential questions such as ‘Why am I here?’, ‘Why is this happening to me?’ and ‘What happens to me when I die?’ seem universal concerns. Care of the soul is thus not a side issue, but central to the wellbeing of all people.
Spirituality pervades every part of who we are. It is bonded to our wellbeing in ways that seem incomprehensible. Our soul integrates the interplay of physical, psychological, spiritual and social health, and is an inseparable companion to every breath we take. When we experience suffering, the search for meaning that emanates from our soul is radically sharpened. Spirituality is central to how we cope and thrive when life delivers pain and discomfort.
Through our interviews and interactions with pastoral care workers, we found that chaplains were absolutely vital to the care of those experiencing suffering. Of particular note was the success chaplains were achieving with those suffering memory loss. Chaplains found that in their experience, a patient’s soul is still present when their memories are gone, and they can connect with the spiritual through familiar music, ritual, sacraments, readings, photos, prayers and touch. In the context of patients with dementia and other forms of memory loss, the chaplains’ work was found to contribute positively to spirituality as an integral part of holistic health (and not merely an influence on health).
Memory loss presents an opportunity for pastoral care
The growing numbers of ageing people experiencing memory loss provides ample opportunity for spiritual carers to contribute significantly to the holistic wellbeing of their clients. Memory loss creates strangers—and the contrast between task-centred care (which depersonalises) and person-centred care (where the whole person is treated with dignity and not as an object) reveals a vital distinction. While clinical practitioners often speak about a patient or client, the literature consistently finds6 that the nature and pressure of their work often leads them to focus on task-centred activities. While clinical theoreticians talk about person-centred care, the clinical literature in the field seems to lack depth in understanding personhood in a manner that adequately integrates its spiritual dimensions.
The notion of personhood has raised the extreme question of whether those who are suffering from memory loss are better off dead. Warnock, a British medical ethicist, argues that those who become dependent are often a burden on others and should be able, through a living will, to ask for death as part of their duty to ‘fall on one’s sword’.7
Consequently, the same ‘non-person’ argument used by some in relation to abortion has been extended to other ‘non-persons’, such as those with a mental impairment. Macadam summarises the work of Warnock, who advocates the ‘non-person’ view in her interview ‘A Duty to Die?’:
The individual diagnosed with dementia has begun making a transition from being a person to being a non-person. As a non-person she has no right to the kinds of moral respect and protection that a person might be entitled to. That being so, to kill her is considered appropriate: if she kills herself, it’s convenient.8
This sort of pathogenic approach, with its focus on disease and disorder, cannot look past the deficits that impair full human functioning as the defining elements of life—whereas a shift in emphasis to the salutogenic, with its focus on health and wellness, identifies the soul’s presence as providing opportunities for joy and fullness of life that may be separated from our experience as carers.
In sharp contrast is the view that God’s memory of you defines your personhood, not your memory. This is where ‘pastoral care as a “ministry of presence” becomes less about one’s own presence and more about the presence of the divine’.9 As a result, the chaplain is perfectly equipped, as part of the healthcare team, to be a spiritual companion to those experiencing memory loss, for whom every morning is a new experience.
While the challenge of memory loss causes us ask these complex questions, chaplains, as ministry practitioners, must respond in practical ways whether they can grasp the answers to those questions or not.
Chaplains as a vital part of the healthcare team
As part of a healthcare team, a chaplain’s role is to provide spiritual care that involves companionship and emotional support for those in need. When a patient has exhausted their treatment options or has a chronic issue, this is vitally important. This emphasis on a chaplain giving caring time focused on an individual’s social, emotional and spiritual aspects enhances what O’Brien describes as finding ‘wellbeing in illness’.10
Dementia does seem to present opportunities for thriving. Carr, Hicks-Moore and Montgomery have found that dementia can prompt people to explore the deeper meaning of their own existence and and take stock of their own lives,11 and Dunn suggests that spiritual identity may increase at the same time as cognitive functioning decreases.12
There is no doubt that general residential care facilities provide the required standard of physical care for those who have dementia. However, nursing and support staff are not equipped to deal with the challenge of spiritual issues.13 While, in God’s eyes, ‘There is nothing that can occur to an individual that can make him less of a person’,14 in organisational culture, there is certainly a tendency for depersonalisation through task-centred management.15
Being aware of this tendency has highlighted that chaplains are an essential part of the health care team, practicing “presence” and “reminiscence” to pastorally journey with those who experience dementia, acquired brain injury, developmental or mental delay or intellectual challenges.