Art & science end of life care
Spiritual care at the end of life Wynne L (2013) Spiritual care at the end of life. Nursing Standard. 28, 2,41-45. Date of submission: June 14 2013; date of acceptance: July 3 2013.
Abstract With increasing focus on providing spiritual care at the end of life, healthcare professionals and those involved in policy development are questioning how to make a 'good' death the expectation, rather than the exception. However, there is a lack of awareness ofthe importance of spirituality to patients' lives, and how good spiritual care can enhance quality of life and improve patient outcomes. This article examines the role of spirituality in palliative care, focusing on spiritual assessment, communication and compassion in nursing. The article attempts to provide a working definition of spirituality focusing on who should provide spiritual care and the difficulties in meeting the spiritual needs of individuals at the end of life. Strategies to promote the spiritual wellbeing of the patient are discussed.
Author Lianne Wynne Staff nurse. The Clatterbridge Cancer Centre, Wirral. Correspondence to: Lianne.Wynne(fficlatterbridgecc.nhs.uk
Keywords Compassion, death and dying, end of life care, palliative care, spiritual care, spirituality
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DEATH AND DYING are sensitive topics for individuals and can make care giving challenging: 'We learn how to live, we learn how to shape our lives... but, nobody teaches us how we're going to accept death... because we don't talk about dying in this country, it's very difficult to give end of life care the priority it deserves within health and social care... It's not just good enough to give physical care... the spiritual dimension is often neglected' (The National Council for Palliative Care 2012). A 'good' death is central to providing holistic care, however 81% of people never record in writing any preferences for their death, and © NURSING STANDARD / RCN PUBLISHING
only 4% of individuals will achieve the death they actively planned for (The National Council for Palliative Care 2012). Death and dying are frightening and isolating concepts that people may have difficulty in understanding. When faced with terminal illness, patients and their families and carers will need support to deal with the often conflicting emotions, including denial, anger, bargaining, depression and acceptance (Kübler-Ross 1989), and the profound questions that can arise, such as: 'What will happen to me?', 'How will I cope?', 'Why is this happening?' and 'Who am I?' (National Institute for Health and Care Excellence (NICE) 2004). It has been suggested that spirituality transcends and 'holds together' the physical, psychological and social aspects of terminal illness (Puchalski and Ferrell 2010). Meeting individuals' spiritual needs has been found to improve quality of life and the ability to cope with ill health (Catterall etal 1998, Balboni etal2007, Delgado-Guay et al 2011). While it is clear that spiritual care is essential to ensure the needs of those who are at the end of life are met, it is less clear how this care should be delivered and by whom.
Spiritual care in nursing Traditionally, nursing has acknowledged and treated the whole person. Holistic care is central to nursing and defines a profession intent on providing a compassionate, humane and respectful service. However, it has been suggested that the religious and spiritual heritage associated with nursing has been eroded by the inception of a scientifically driven NHS that focuses on a medical model of nursing (Holloway et al 2011). Spiritual care has, to some extent, been preserved by the hospice model of care, regarded by many as a model of excellence in which holistic care underpins and directs philosophy and practice (EUershaw and Ward 2003). The World Health Organization (WHO) (2013) defines palliative care as 'an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain September 11 :: vol 28 no 2 :: 2013 4 1
Art'¿^science end of life care and other problems, physical, psychosocial and spiritual'. Helping patients die in a manner that meets their individual social, physical, psychological and spiritual needs is a requirement ofthe Nursing and Midwifery Council (NMC) (2013). A study investigating nurses' perceptions of what constitutes a good death identified spirituality as one of eight main themes, alongside symptom control, patient choice, honesty, interprofessional relationships, effective preparation, and organisation and provision of seamless care (Griggs 2010). Indeed, spirituality has recently become something of a 'buzz' word in research and literature, with spiritual care being recognised as fundamental to the successful delivery and promotion of high-quality care. Spiritual care is also regarded as an integral component of palliative care, which is acknowledged in the End of Life Care Strategy (Department of Health (DH) 2008) and the National End of Life Care Programme (2010), and is advocated by NICE (2004). In simple terms, spirituality - or, more specifically, spiritual care - matters on a personal, professional and political level.
Chatlenges associated with spiritual care Spiritual assessment at the end of life involves staff observing the relevant rituals and protocols pertaining to different religions (NICE 2004). This helps staff to avoid offending patients and their families or omitting certain practices, thereby ensuring that patients die in the manner they wish (Holloway ei a/ 2011). However, while this is an essential aspect of care, it does not address the individual needs, wishes and preferences of patients who do not adhere to particular religious values and belief systems. Difficulties providing spiritual care at the end of life can be attributed partly to a lack of understanding of the word spirituality. Despite emerging policy and academic thinking surrounding the concept of spirituality, and its similarities and differences with religion, there is no universal definition that can be applied professionally, practically, academically and personally (McSherry and Jamieson 2011). Spirituality and religion are often confused or considered to be same thing, but while they complement each other, they are separate elements. Religion tends to focuson beliefs, ethics, rituals and traditions. Spirituality is intangible and subjective, meaning different things to different people. Some patients will regard themselves as being both religious and spiritual. Furthermore, individuals who belong to a specific religious affiliation often find support, comfort and strength in their community, while those who do not 42 September 11 :: vol 28 no 2 :: 2013
express their spirituality in religious terms can become isolated, with their needs overlooked or not recognised by healthcare professionals (Puchalski et al 2006, Watson et al 2009). Research demonstrates that nurses have difficulty separating spiritual and religious needs, and this acts as a barrier to identifying patients in spiritual distress (Abbas and Dein 2011). Religious needs can be met by arranging a visit with the local head of a nominated tradition, for example, while spiritual needs can be subtle and varied, such as needing to sit outside, arranging a visit with a supportive friend or simply being listened to (NHS Education for Scotland 2009). It is important to note that spiritual needs can change throughout the person's illness, thereby emphasising the importance of continual assessment (NICE 2004). Effective spiritual care recognises the need for individualism, self-expression and faith support through ongoing human contact, compassion and understanding (NHS Education for Scotland 2009).
Defining spirituah'ty Commonly used definitions of spirituality refer to the human search for meaning, hope, and purpose in life and death (Catterall etal 1998, Royal College of Nursing (RCN) 2011). Although simplistic in nature, this is a good starting point for healthcare professionals, enabling them to become aware of the main tenets of spirituality before identifying the complexities of the concept. This definition also helps healthcare professionals to introduce spiritual care to their consciousness and everyday language (Swinton and Pattison 2010). Not having an appropriate language with which to discuss spiritual needs is often cited as a major barrier to the delivery of effective spiritual care (Abbas and Dein 2011, Milligan 2011).
Spiritual assessment Assessing spiritual needs, alongside physical, psychological and social needs, is recommended in UK practice guidance, with good spiritual assessment regarded as fundamental to effective end of life care (NICE 2004, NHS 2013, WHO 2013). However, research suggests that spiritual needs at the end of life are often unmet and under-recognised (Crunkilton and Rubins 2009). This may occur because of healthcare professionals' lack of confidence in discussing spiritual matters, a lack of spiritual or self-awareness, feelings of embarrassment, fear of causing distress to patients, role ambiguity and no appropriate assessment tool (NICE 2004, Belcher and Griffiths 2005, Abbas and Dein 2011, McSherry and Jamieson 2011). © NURSING STANDARD / RCN PUBLISHING
Integrating spiritual care into nursing practice is complex, vague and confusing (Swinton and Pattison 2010, Milligan 2011). Nurses frequently assess patients' spiritual and/or religious needs in an unstructured, inconsistent manner (Catterell etal 1998, Milligan 2011), partly because of a lack of clarity concerning what spiritual care means and who should deliver it (Swift et al 2007, Ellis and Narayanasamy 2009), This may be compounded by the fact that both healthcare staff and patients may not fully understand what spiritual care means to them, why it matters and whether it matters (Abbas and Dein 2011). While evidence suggests that nurses are comfortable with the inclusion of spiritual assessment and spiritual care in their nursing role, many lack the time, training and expertise to provide such care competently (McSherry and Jamieson 2011). This may mean that patients are vulnerable to experiencing spiritual distress.
control and improved spiritual care (Puchalski etal 2006, Yardleyeifl/2009). Simple questions can be used to initiate discussion and explore the patient's spiritual needs, such as: 'How do you find strength to cope?', 'How do you make sense of the things that happen to you?', 'Where do you find your support?', or even more simply, 'How are you today?' or 'Would you like to see someone who can help you?' (RCN 2011). It is essential to respond appropriately, giving patients time and space to explore their thoughts and feelings. Observing clues such as the patient being angry, sad or withdrawn, are useful in identifying spiritual distress (RCN 2011). While spiritual care is part of the remit of nursing practice, it is important to know when to refer patients to other sources of support, for example a friend, family member, counsellor or chaplain (RCN 2011).
Spiritual distress is known to result in poor recovery, lack of acceptance of illness and reduced quality of life (Eitchett et al 1999, Tarakeshwar et al 2006, Balboni et al 2007, Abbas and Dein 2011), while spiritual wellbeing is associated with coping (Catterall etal 1998, Balboni etal 2007, Delgado-Guay et al 2011). Spiritual distress also results in poor concordance with treatment and increased hospitalisations (Park eifl/2008, 2011). Evidence from the United States identifies a significant link between supporting patients' spiritual needs, improved quality of life and the need for less aggressive medical interventions (Prigerson etal2009). Eurthermore, patients who feel that their spiritual needs are recognised and addressed rate the care they receive highly (Williams et al 2011).
Integrating spiritual care into practice
Encouraging a spiritual dialogue between the healthcare professional and patient has the potential to improve patient outcomes, and promote the seamless implementation and adaptation of supportive practices, such as early assessment and advanced care planning. Effective spiritual care, communication and assessment can provide the foundation on which to develop a care plan that meets the specific needs of the patient, including personal values and beliefs. This supports the ethical requirements of healthcare professionals to demonstrate dignity and respect when caring for patients (NMC 2013). Spiritual dialogues also provide the opportunity for individuals to explore, with authenticity, the effect their illness has on their life (Saunders 2000). Starting a spiritual conversation is as much about attitude and understanding as it is about assessment and discussion. Patients who perceive nurses to be warm and caring are more likely to be open to discussing their concerns, leading to better symptom
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Saunders (2000) believed that a good death was reliant on 'being with' as opposed to 'doing for' the patient. This notion of being with the patient is derived from a relationship of deep involvement, built on trust, honesty and active listening (Haraldsdottir 2011). Many nurses regard being with the patient, as opposed to engaging in formal spiritual assessment, as the most important aspect of spiritual care for those in the last few days of life (Tuck 2009). However, being with patients, engaging with their suffering and showing compassion can be challenging. The NHS Institute for Innovation and Improvement (2013) makes specific reference to compassion in nursing as a fundamental principle, skill and value. Compassion should be an integral aspect of everyday nursing care, with the role of the healthcare professional to: '... respond with humanity and kindness to each person's pain, distress, anxiety or need. We search for the things we can do, however small, to give comfort and relieve suffering. We find time for those we serve and work alongside. We do not wait to be asked, because we care' (NHS Institute for Innovation and Improvement 2013). Compassion is integral to good spiritual care, enabling and motivating nurses to recognise, engage and alleviate spiritual distress with skill, dignity and respect. Good spiritual care should be personal, intimate and intuitive (Ellis and Narayanasamy 2009). In a study examining spiritual care at the end of life. Tuck (2009) found that all patient notes mentioned restlessness or agitation, but there was little or no reference to spiritual distress as a possible cause. 'Total pain' is a concept developed by Saunders (2000) to capture the multidimensional nature September 11 :: vol 28 no 2 :: 2013 4 3
Art & science end of life care of the pain experience, in which adequate pain management is not achievable if the physical, mental, social and spiritual needs of the patient are not equally considered. Saunders' (2000) philosophy demonstrates that understanding pain and distress is inextricably linked to the patient's narrative. This refers to the stories patients tell to describe their lives, how they find meaning and what matters to them (Holloway etal 2011). Therefore, effective spiritual assessment and communication, alongside compassion and empathy, underpin best practice in end of life care.
Recommendations While there has been little in the way of spiritual education in the nursing curriculum, the government white paper Our Health, Our Care, Our Say (DH 2006) prioritised staff training to improve the care of those at the end of life. At the Marie Curie Hospice in Liverpool, the HOPE spiritual assessment tool and a spiritual care plan have been implemented and are routinely used on patient admission. The care plan lists goals and objectives that nursing staff should achieve during the patient's time on the ward. It is updated regularly to ensure that the patient's spiritual care needs are being met routinely and assessed continually. The care plan is a prompt to remind nursing staff to offer spiritual care as part of holistic care, thereby enhancing quality of life and wellbeing of patients, families and carers. The HOPE tool provides four key areas for discussion (Anandarajah and Hight 2001): • H - sources of Hope, strength, comfort, meaning, peace, love and connection. • O - the role of Organised religion for the patient. • P - Personal spirituality and practices. • E - Effects on medical care and end of life decisions. Most spiritual screening tools rely on simple, open-ended questions to assess the meaning and significance of spirituality for the individual (Holloway ei a/ 2001). For example, Hegarty (2007) recommended using three questions to start the conversation: 'What nourishes you?', 'What feeds your spirit?' and 'Where do you find strength in difficult times?'. In a similar fashion, the spiritual care plan is a simple yet effective strategy that ensures patients' needs are recognised on admission. The care plan forms part of the initial admission assessment for all patients and must be signed by the admitting nurse to document ongoing spiritual needs and preferences. Because spirituality is difficult to define, and therefore easy to neglect, it is important to provide simple guidance for staff in the form of an assessment tool or a framework. 4 4 September 11 :: vol 28 no 2 :: 2013
Marie Curie Cancer Care (2003) introduced a framework that details four distinct levels of competence, promoting knowledge, skills and actions appropriate to each individual. Levels one and two of the framework refer to staff and volunteers who have casual and/or direct contact with patients. These levels encourage awareness of spirituality in the palliative care context, having the skills to develop a relationship with patients, and understanding how to listen and respond appropriately. Levels three and four of the framework refer to staff and volunteers from the multidisciplinary team, and those providing specialised spiritual care. These levels require in-depth knowledge of one's own spirituality, and provide detailed instruction of the skills and knowledge required to recognise the complexities surrounding spiritual, religious and ethical issues. This framework encourages staff to recognise their own capabilities and limitations, and refer to other colleagues or healthcare professionals when necessary (Gordon and Mitchell 2004). While spiritual care plans, assessment tools and competency frameworks are not new or particularly innovative, their implementation reflects the commitment of healthcare professionals to improve practice. Spiritual care does not have to be complex or even lengthy to be useful or effective. It is essential for nurses to be creative and not to be afraid to adopt commonly used tools or create their own. Eor the inclusion and progression of spiritual care in everyday practice, it is essential that healthcare professionals receive the necessary education and training to enhance their understanding of spiritual needs, and the importance of effective spiritual dialogue, assessment and care at the end of life. This need has been reinforced by various practice guidance documents and research literature (Gordon and Mitchell 2004, NICE 2004, National End of Life Care Programme 2010).
Conclusion Despite the increasing focus on the need to provide spiritual care at the end of life, the subjective nature of spirituality makes care provision in this area difficult. There also remains uncertainty about how spiritual needs are to be assessed and who is best qualified to do this. Spirituality helps people to make sense of what is happening to them, and to find comfort at the end of life, and is associated with improved coping and quality of life. Attending to spiritual care is an integral part of the nurse's role and is inextricably linked to compassion and communication. Therefore, nurses have a duty to ensure they are skilled in these areas to support optimum care for patients at the end of life N S © NURSING STANDARD / RCN PUBLISHING
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