Introduction
Spirituality contributes to quality of life and wellbeing. [1] It has been associated with positive emotional and mental health [2-4] and the ability to cope in a time of stress. [2,5,6] For many people, spirituality is important throughout life; for many older people, the identification and support of spiritual needs is especially important at the end of life. [4,5,7,8] Definitions of spirituality are debated in the literature and often described as making connections, searching for or giving meaning and purpose to life, and seeking transcendence. [1-14] Spirituality can occur in the absence of any religious affiliation or practice. [1,4-7,10-12,15]
Quality Statement
The quality of the included literature is of acceptable to high quality.
The National Guidelines for Spiritual Care in Aged Care [1] and the associated literature review [7] were included. They specifically pertain to spirituality in older adults.
Systematic reviews were found pertaining to the combined palliative care context and aged care context including dementia [3,5,6,13-16], the palliative care context alone [8,11,12,17-20] or the aged care context alone. [2,4,9,21] A report was also retrieved which records consensus via two conferences (2012 and 2013); this pertains to spirituality broadly and is not specific to either the palliative care or aged care context. [10] Other sources were included to give context to this topic. [22-28]
A recently published qualitative primary study was included as it identifies organisational-level principles and practices that support high-quality spiritual care at end-of-life. [29]
Evidence Synthesis
The experience of ill-health particularly at end of life can rekindle or intensify spiritual or religious awareness and early research suggests positive associations with spirituality, positive emotion and mental health. [2-8] At the end of life, spiritual or religious belief may help the person’s coping and facilitate a renewed peace of mind in approaching death, finding meaning and purpose in their final days. [3]
The recognition that health professionals have a role in spiritual or religious care is relatively recent. [1,3,4,7,10,18] The authors of the National Guidelines for Spiritual Care in Aged Care suggest that spiritual care is best delivered through a whole-of-organisation approach. [1,7,9] The authors also highlight the importance of a spiritual assessment for all people receiving aged care: an initial spiritual screening and an in-depth spiritual assessment. [1]
Measurement of spirituality – tools and instruments
The measurement of spirituality is essential in screening and assessment. [8,11,12,24]
The ConnecTo Tool is available to assess spirituality in older adults. [24] Recent research recommends that shorter scales be developed to maximise respect of patient quality of life and that technological aids and devices be used to enhance information collection and use. [19]
Gijsbert et al. [8] use the instruments measuring spirituality in end-of-life populations to develop a model conceptualising spirituality. This model has three dimensions 1) Spiritual Wellbeing, 2) Spiritual Cognitive Behavioural Context (including spiritual beliefs, spiritual activities, and spiritual relationships), and 3) Spiritual Coping. All three dimensions and sub-dimensions inter-relate. The authors consider spiritual wellbeing as a care outcome, to which all others can contribute.
Two reviews by Selman et al. [11,12] investigate the culturally diverse aspects of spirituality and focus on multicultural advanced cancer, HIV, and palliative care populations. The first review [11] identifies and categorises spiritual outcome measures, and assesses the cross-cultural applicability of tools used to assess spirituality. They find that of the 38 tools validated in these populations, only nine had been validated in either one or more ethnically diverse population or in more than one country. The second review [12] builds on this review and appraises the psychometric properties, multifaith appropriateness, and completion time of spiritual outcome measures of these nine tools. The authors conclude that the McGill Quality of Life Questionnaire (MQOL), the Measuring the Quality of Life of Seriously Ill Patients Questionnaire (QUAL-E), and the Palliative Outcome Scale (POS) seem the most appropriate multidimensional measures containing spiritual items for use in these populations as they have the strong psychometric properties. Selman et al. indicate that the World Health Organization’s Quality of Life Instrument-HIV (WHOQOL-HIV) has promising psychometric properties and recommend acquiring further evidence of reliability and responsiveness. They also indicate that although the Beck Hopelessness Scale (BHS) has the strongest psychometric properties, further testing of reliability specifically in palliative care populations is needed.
A review by Oliver et al. [19] on spiritual tools for palliative care summarises 14 papers published during 2014–2015. The authors recommend that to better respect patient quality of life, shorter scales and measurement protocols should be developed. They also recommend that spirituality evaluation tools include new issues such as complicated grief or satisfaction with spiritual care, and that these should take a combined perspective: the person, their family and healthcare professionals.
Spiritual care or spiritual interventions
Spiritual care is an important aspect of palliative care, holistic or inclusive care, dignity-conserving care, respectful and culturally appropriate care, and compassionate care. [1,4-7,10,14,16,18] Spiritual care includes sensitive and respectful interactions, empathetic communication, activities like storytelling, reminiscing, mindfulness and meditation, prayer, [4-6,9] therapeutic life review [15] or dignity therapy. [6,18]
Assessment and treatment of spiritual needs is inherent in the WHO definition of palliative care. [6,25] Yet, in a systematic review of multicomponent palliative care interventions in older adults, only one third of studies included spiritual support as a component of palliative care. [16]
Gautam et al. [4] acknowledge that spirituality can support the changes of ageing and highlight the importance of spiritual care for older people in the community and in residential aged care. Trusting relationships and maintaining connections with family, friends and nature are important parts of spiritual care along with feeling safe and able to participate in meaningful activities or to give back to others.[4]
Jackson et al. [9] found many definitions of spiritual care and spirituality in the literature, but none specifically for aged care. They found spiritual care can be provided well by team members with varying backgrounds and that the entire aged care team had a role in the spiritual care of older adults. They suggest that a whole-of-organisation approach may better support and maintain good practice rather than expecting individual staff to accept responsibility for incorporating spiritual care. The above findings lead to the development The National Guidelines for Spiritual Care in Aged Care. [1] They describe the elements of spiritual care in aged care as assessment, trusting relationships, compassion, reminiscence and storytelling, mindfulness and meditation, as well as explicit religious practices such as ritual, prayer and reading scripture.
Burlacu et al. [14] found a positive relationship for patients with end stage renal disease between spirituality and religiosity and the outcomes of resilience, adherence to treatment and quality of life. [14] Based on observational studies, they suggested that nephrology guidelines on palliative care and/or elderly people should include recommendations on religious/spiritual support and opportunities for integrated specific therapies. They also noted that most patients want to discuss issues about spirituality and religiosity with their nephrologists, although less than 30% had been asked about their beliefs. [14]
Candy et al. [3] in a Cochrane review of quantitative studies, describe spiritual and religious interventions for adults in the terminal phase of a disease and their effectiveness on wellbeing. Only five studies met the inclusion criteria. Two studies evaluated meditation. Three studies evaluated the work of a palliative care team that involved physicians, nurses and chaplains. Studies compared those who received the intervention with a control group. Studies evaluated the interventions in various ways including whether it influenced a person’s quality of life. The results were inconclusive as to the benefits of meditation. The results also failed to show whether palliative care teams that involve a chaplain or spiritual counsellor help patients feel emotionally supported. The paucity of quality research indicates the need for more rigorous studies.
Therapeutic life review has been shown to be beneficial for older people through the recognition of accomplishments and resolution of conflicts. It can be seen as more powerful than reminiscence; the search for meaning in life events can be beneficial in bringing peace. Keall et al. [15] explored the role of therapeutic life review in the existential and spiritual domains of palliative care. The authors note the paucity of research in this area. They conclude that the diversity of interventions and measures used in any research, make it difficult to determine the most effective way to conduct therapeutic life review with people receiving palliative care. As these people are already very ill, the authors note, not unexpectedly, that shorter interventions are more beneficial. The authors caution that adequate staff training is important for the successful delivery of this intervention as deep psychosocial issues may be aroused, indicating the need for subsequent psychosocial support.
Psychosocial issues such as settling relationships, expressing feelings of love, and preparing legacies of memory and shared values, take on a heightened importance at the end of life. Dignity Therapy (DT) focuses on issues such as these. In exploring DT, Fitchett at al. [18] found robust evidence for DT’s overwhelming acceptability. The authors suggest that its mechanisms may be related to role completion and spiritual aspects of a person’s life. They recommend further research to accurately determine the possibility that its main impact is in a spiritual dimension. They also see the potential positive value that DT may have for the family and carers of people with a life-limiting chronic disease.
Organisation-level principles and practices to support spiritual care at the end of life
Despite the recognised importance of spiritual care in quality end-of-life care, Holyoke and Stephenson [29] note the historical progressive distancing and separation between modern medicine and religious and spiritual attitudes, ideas, and practices. From their investigation of practices in established palliative care organisations founded and operated on specific spiritual foundations, they developed nine principles for organisational support for spiritual care. Three principles identify where and how spiritual care fits with the other aspects of palliative care; three principles guide the organisational approach to spiritual care; and three principles support the spiritual practice of care providers within the organisations. This research recognises the vocational nature of palliative care, suggesting that with organisational support, it is possible for spirituality to become a defining feature of the nature and quality of end-of-life care. They recommend that spiritual care be guided and directed by the dying person and his/her family; this can be achieved when an organisation enables care providers to have a flexible, adaptive, immediate, in-the-moment approach to responding to spiritual needs and a conducive physical environment. They recognise the significance of rituals (not necessarily religious), time for processing experiences, strong staff interpersonal bonds, and the presence of volunteers.
Spirituality in aged care
Primary studies investigating the experiences of older people dying in residential aged care, report descriptions ranging from ‘inadequate’ and ‘addressed if initiated by the older person’, to ‘satisfactorily managed’. [21] Greenwood et al. propose that collectively this suggests if care staff had open discussions about death and the potentially negative spiritual and psychological features of dying, the experiences of dying residents might be better recognised, acknowledged and therefore improved. [21]
The first National Guidelines for Spiritual Care in Aged Care [1] were published in Australia in 2016. The Guidelines provide a framework for best practice in spiritual care for older people and are accompanied by resources, suggestions and ideas for implementation. [23] These Guidelines are designed specifically for offering spiritual care and support to older people living in residential aged care, or receiving care and support through home care packages. Recommended is a whole-of-organisation approach and included is a section to address the spiritual wellbeing of certain groups of older people with special needs.
For Aboriginal and Torres Strait Islander people, spiritual well-being is core to Aboriginal identity, and gives meaning to all aspects of life including relationships with each other and the environment. [22] The connection to Country is deep and spiritual and spiritual health is closely linked to physical health. [22] Their connections to family, culture, community, ceremony, and their roles as Elders in community will influence their health and wellbeing and the way they seek and accept palliative care and aged care services. [22,26-28]
Spirituality and older adults with dementia
Spirituality and religion appear to have positive effects on older adults with dementia and their family members. [2,5,6,9] This includes enhancement of meaning and purpose in life, maintenance of relationships, and the provision of comfort and hope and the ability to better cope with the diagnosis and loss. [6]
Agli et al. [2] investigated the effects of spirituality and religion on health outcomes and note that the positive effects of spirituality and religion are observed in the majority of included studies. These practices allow cognitive functions to improve, or at least stabilise, and also enrich coping strategies enabling a better quality of life. These results confirm findings from previous studies. The authors suggest that this may be through the maintenance of social interactions, the search for meaning in life, and that prayer may give beneficial stimulation to neural pathways. The authors caution that certain weaknesses across studies have been identified, which could be addressed in future research to increase methodological rigor and a stronger evidence base.
Jackson et al. [9] acknowledge the importance of rituals in providing cues, patterns and symbols to older people living with cognitive impairment or with dementia. These rituals may include familiar sights, or spaces, or the familiar order of prayer or reading of scripture. It appears that these rituals are helpful in immersing people in the deeper meaning of their faith and spirituality, and thus provide comfort. These authors also note that access to scriptures can assist in managing anxiety, depression, stressful situations, and contribute to spiritual care of older adults. Prayer was also seen to offer a sense of strength and comfort for older people living with dementia particularly if it was offered in a personal and meaningful way.
Daly et al. [5] found that spirituality and its forms of expression were drawn on by people with dementia as active coping mechanisms particularly by those for whom spirituality was an ongoing part of their life course. Spiritual expression or practices helped older people with dementia to foster hope, make meaning of their situation and to preserve their identity and connection. [5,13] Familiar spiritual religious practices often provided reassurance and pleasure, but with increasing memory loss it was associated with a sense of loss. [5]
A scoping review by Palmer et al. [6] on the intersection between dementia, spirituality, and palliative care highlights the need for more robust research in this area including a common definition of spirituality.
Deathbed phenomena as a trigger for spiritual discussions
Deathbed phenomena (DBP) is also known as ‘Transcendence Phenomena’ [20] DBP is characterised by visions and is an unusual and hard-to-explain end-of-life experience. Although it is not uncommon in the health care setting, DBP may not always be reported by patients or their carers. In a review, Devery et al. [17] acknowledge that DBP may be a new and intense spiritual experience or it may be an extension of spiritual beliefs and lifelong bonds and relationships. These experiences may be very disconcerting for the person and their family and carers; consequently, they may find it difficult to understand and to share with others. If these phenomena are shared, health professionals may use this as an opportunity to discuss spiritual and existential concerns, which have the potential to offer hope, meaning and connection. [17] In doing so, it is important to ask the person to describe the experience and what it means to them, and to listen without labelling or judging. It is also important to reassure them that this is a common experience.
Evidence Gaps
- A consistent definition of spirituality, not common in the literature, will help comparison of research findings.
- Research with larger sample sizes and methodological rigour is needed to build the existing evidence base for spirituality and spiritual care for older people in a palliative care context. Its relationship to complicated grief could be explored.
- Preliminary research conducted in Australia to develop a valid assessment tool to assess and respond to the spirituality of older people in residential aged care needs to be conducted on a national scale and include diverse language and cultural groups and older people at the end of their life. [30,31]
- More qualitative research is needed to determine for whom, by whom, how, when and under what conditions spiritual care is most beneficial.
- Spiritual support for carers and family of older people at end-of-life is rarely researched. There is some evidence to suggest that carers may indirectly benefit from interventions, but there is also a need for interventions designed specifically for carers; and to understand if and how it may help in the period of bereavement.
- There is promising evidence in the role of meaningful activities and spirituality/religion in the health and wellbeing of people with dementia. Future research with more methodological rigour could validate findings from current studies.
- There is a lack of consistency in the way existential suffering is defined and the way it may be understood to be a spiritual concern. Ways to address existential suffering and deep personal anguish at the end-of-life are not well understood.
- Future research could track the implementation the nine organisation-level principles and practices to support spiritual care at the end of life proposed by Holyoke and Stephenson [29] including a description of the lessons learned.
Page updated 24 June 2021