Spiritual dimensions of dying in pluralist societies
BMJ 2010; 341 doi: https://doi.org/10.1136/bmj.c4859 (Published 16 September 2010) Cite this as: BMJ 2010;341:c4859
- Liz Grant, senior lecturer,
- Scott A Murray, St Columba’s Hospice professor of primary palliative care,
- Aziz Sheikh, professor of primary care research and development
- 1Primary Palliative Care Research Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh
- Correspondence to: A Sheikh aziz.sheikh{at}ed.ac.uk
- Accepted 15 May 2010
“Man is not destroyed by suffering; he is destroyed by suffering without meaning.”
VE Frankl1
Palliative care is about helping people die well, but how do we know how to “die well”? In all cultures, sacred stories, proverbs, and rituals around death exist to help people prepare to die. Death and dying were keystones of the grand narrative of religion. But religions, in Western cultures, are disappearing, and grand narratives have been replaced by worldviews driven by individual success that are not so much death denying as blind to death.
In this article, we reflect on the spiritual needs of the dying and on how these needs can best be understood and met in pluralist societies. An assumption underpinning our approach is that the core aspects of spirituality are common to all people, although the external manifestations of spirituality and spiritual need are many and varied. Where appropriate, key issues are illustrated with data from our qualitative studies investigating the end of life experiences of patients and their social and professional carers in a range of populations.2 3 4
Understanding spirituality
Cecily Saunders proposed the concept of “total pain” to capture the complex effects of physical, emotional, and spiritual pain experienced by patients with advanced illnesses, thus introducing the idea of spiritual distress and suffering to the palliative care discourse. Spirituality, in the context of end of life care, is now incorporated into international health policies, clinical guidelines, cultural training initiatives, and quality of life measures.5 Recognition is increasing among health professionals that spiritual issues and needs may affect the likelihood of achieving a good death, and should therefore be met if possible. Often less clear is how these needs should be met and by whom.
Understanding what spirituality is, especially in relation to religious beliefs, remains problematic with many diverse definitions.6 7 8 9 Religions are understood as systems of belief, often relating to deities or spirits, that connect people together into communities through structures, worldviews, and rituals. Spirituality, though commonly practised within the framework of religion, can also be experienced outside formal religious structures.
Spirituality is multidimensional and relational, encompassing meaning and purpose, self reflection, hope, faith, beliefs, and a sense of sacredness and separateness. Common to all expressions of spiritual need among those facing end of life issues is a search for meaning. Spiritual needs are about the need to be valued, to repent and be forgiven, to achieve self integrity, and to face and accept death. Spiritual resolution is frequently about the ability to affirm and value relationships with one’s self, with family, with community, and with the “other”—whether that is a deity, unseen spirits, nature, humanity, or the unknown. Spiritual needs can be seen as different from psychological needs in that they are embedded in a sense of the sacredness of life.10
Why does spirituality matter in end of life care?
A sense of wellbeing is one of the main predictor variables in the will to live among patients in the last year of life.11 Religious and spiritual beliefs often affect patients’ decision making towards death. Those who believe that the span of their life is in the hands of a deity greater than them, who knows their time and who cares for their future, are often more able to accept an end to futile treatment and exude a sense of calm and dignity as they await death.12 As noted by Breitbart, “Palliative care informed by spiritual attentiveness allows both the patient and the provider to give up illusions of therapeutic entitlement to cure and at the same time honor the privilege of intentional and reverent caring for the dying.”13
Conversely, unmet spiritual need can negatively affect a person’s sense of wellbeing and their capacity to cope with pain and suffering.3 Spiritual distress has been identified as a factor in depression, demoralisation, and end of life despair.14 15 16 Patients can be at their most vulnerable when expressing their spiritual needs, an experience that can be cathartic if patients feel that they have been listened to; if they are not listened to, it can leave them feeling empty, rejected, and hopeless.17
Patients often struggle to explain their spiritual needs. In developed countries, this generation’s loss of a spiritual language coupled with the tension of traversing two different discourses—medical and spiritual— can result in increased angst about unresolved issues, uncertainty, lack of self confidence, and vulnerability, which in turn can further heighten spiritual distress. This distress can affect patients’ ability to sleep and their capacity to cope with pain. Figure 1⇓ illustrates the cycle of spiritual distress. Health professionals may tend to deal with the symptoms as presented—for example, resorting to prescribing medication. As a patient remarked: “I am not really depressed, but the doctors gave me antidepressants.”3
Fig 1 Unmet spiritual need cycle may result in increased demand and service use3
For those with religious beliefs, being able to fulfil traditions and rituals around death is important and can have a considerable effect on how a patient dies and how their family copes with the bereavement. Ancient religious rites emerged in cultures and contexts very different from the 21st century hospital wards where 60% of people now die in the UK. Although the need to facilitate rites is recognised within hospital spiritual care strategies, there are still gaps in provision of the space and place for these needs to be met.18
Identifying spiritual distress and delivering spiritual care
Key time points
Qualitative longitudinal research in people with lung cancer and their carers has revealed four key times when people may be spiritually distressed (fig 2)⇓ 4 19—at diagnosis; at home after their initial treatment; at disease progression or recurrence; and in the terminal phase. Murray and colleagues note that: “When people with life threatening illnesses and their carers ask about prognosis (‘How long have I got?’), they are often doing more than simply enquiring about life expectancy”.20 They may be asking about the probable course of events until they die and have a number of existential issues and questions in mind (box 1). Medicine has traditionally relied on knowing the heart of the person in order to effect healing, but in busy clinical settings the therapeutic power of the relationship between doctor and patient can be overlooked or subsumed by technology. Yet as a GP explained in one of our studies, “Respect is a core value of general practice, it means valuing their soul qualities—it’s impossible to practise appropriately without caring for the spirit.”21
Box 1 Common spiritual concerns
Searching for meaning: “What was the purpose of my life?”
Searching for validation: “Was my life worth living and did I live it well enough?”
Asking for forgiveness for mistakes: “Can I be forgiven and absolved of the past?”
Searching for a sense of redemption, and restoration to wholeness
Searching for reconciliation of memories, and of broken relationships, for reunion and community of spirit among all relations
The quest for peacefulness and searching to make peace with others and with self
Asking for permission to leave this world
Challenges in offering spiritual care
Offering spiritual care can be challenging. As Sloan argues, “Between the extremes of ignoring the role of religion within health and actively promoting it, there lies a vast uncharted territory in which guidelines for appropriate behaviour are needed urgently.”22 The current General Medical Council consultation on end of life treatment and care states that doctors should be able to diagnose spiritual distress.23 Yet fear of causing offence, of misunderstanding, or of crossing unspoken cultural barriers, along with a lack of training and knowledge, can lead to freezing of action.2 24 Health professionals also sometimes fear that they will be seen to be proselytising. Encouragingly, however, the National Institute of Health and Clinical Excellence (NICE) has made clear that spiritual care is the responsibility of all clinicians,25 a view that is echoed in Marie Curie’s religious and spiritual competency framework.26
Available resources
Key to offering spiritual care is an awareness of what resources are available and what is required. While providers have looked to a product or a tool to give spiritual care, patients frequently identify that spiritual care is more about giving a person permission to speak and be heard, and about people relating to their essential “inner self” rather than their weakening physical “outer self.”27 “My doctor, the most important thing that he does—well he assures me that I’m not away yet. He always listens.”3
This patient centred approach is, as with other dimensions of health care, best delivered by a community of workers. As Meador argues, “The best spiritual care for the dying patient is most likely to be delivered in the same way other types of care are best provided, through partnerships within the team of persons caring for the patient.”28 Supporting people within their own worldviews while allowing expression of fear and doubt may help patients in their search for meaning and purpose and prevent spiritual concerns escalating into disabling distress. Allowing patients to raise spiritual and religious concerns may furthermore be therapeutic; the use of a gentle prompt, such as, “You seem fine today, but do you ever feel down or a bit low?” may in this respect prove helpful (see box 2 for further suggested prompts). Most people with advanced illness have already “brushed with death” and may have competing private and public accounts of their illness in their minds.1
Box 2 Possible questions to guide spiritual exploration in people with advanced illnesses19
What’s the most important issue in your life right now?
What helps you keep going?
How do you see the future?
What is your greatest worry or concern?
Are there ever times when you feel down?
Is religion or faith important to you?
But alongside a patient centred approach, which everyone can offer, lies a role that may require another sort of expertise, that of being able to help articulate the sacred. Chaplaincy teams, increasingly staffed by multi-faith members, are trained to meet the needs of people of all faiths (and none) and can provide such expertise. This may involve conducting a ceremony (for example, a naming, a blessing, or a baptism for a baby that has died), listening to a final confession or testimony of faith, performing a marriage, creating a safe space for family and personal reconciliation, and providing an opportunity for final cleansing rites (box 3).
Box 3 Common religious traditions and rites around death
Prayers
Confessions
Final family blessings
Washing and cleansing
Last rites
Covering the body and placing it in the right position and direction
Funeral routines
Pouring libations
Patients and families who have felt that their religious and spiritual needs have been met often speak of the sensitivity and understanding shown by healthcare staff in listening to them and respecting the motivation and need of patients and families to carry out their rituals.
Conclusions
To meet spiritual and religious needs, healthcare workers have to be aware that such needs might be present, differentiate such needs from other needs, and assess if they are causing distress. This awareness involves listening to patients, their carers and families, and others in the wider healthcare system with knowledge and understanding of the nuances of religious and cultural traditions. As Gatrad et al have noted, “Understanding each other’s narratives of what constitutes a good death offers us the possibility of improving the quality of care we deliver.”29 It also involves knowing what our health and referral system structures already provide and what they could provide better, such as time to listen and to meet the specific spiritual and religious traditions that are important to patients and those dealing with death.30
Expressions of religious beliefs are manifold in our diverse society, as are expressions of secular spirituality, but underpinning all these expressions are a similar set of questions relating to the past, the present, and the future, and fundamentally about being at peace with ourselves, with our family, and with the physical and metaphysical world around us.
Notes
Cite this as: BMJ 2010;341:c4859
Footnotes
We thank the researchers, participants, and funders who contributed to the projects from which data have been drawn.
Part of the costs of producing the BMJ supplement in which this article appeared were met by the British Heart Foundation. The article was commissioned and peer reviewed according to the BMJ’s usual process.
Contributors and sources: LG and SM have together conducted a number of in-depth serial interview studies with patients with malignant and non-malignant illnesses, their families, and professional carers, and have come to realise how important spiritual issues are to many people with advanced illnesses and their carers. AS has a longstanding interest in the interface between religion, health, and healthcare provision, focused in particular on the importance of health services effectively and sensitively meeting the needs of faith communities. AS and SM conceived the idea of this paper and together with LG mapped out the scope for the piece. The paper was drafted by LG, with various drafts being commented on by SM and AS. LG and AS are guarantors.
Conflict of interests: All authors have completed the Unified Competing Interest form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare: no support from any organisation for the submitted work; AS and SM are grantholders on the COMPASS Collaborative, a programme grant for the development and evaluation of complex interventions in end of life care, which is supported by the National Cancer Research Institute; LG, SM, and AS had support from the Chief Scientist’s Office of the Scottish Government, which has informed the submitted work; no other relationships or activities that could appear to have influenced the submitted work.