SPIRITUAL CARE AT THE END OF LIFE

Ayyu Sandhi School of Nursing, Faculty of Medicine, Universitas Gadjah Mada, Indonesia

Abstract Background: Spiritual care is a core element of palliative care, yet it belongs to one of nursing interventions. Many publications confirmed patients, family members and palliative care experts' consent about the importance of spiritual care for seriously ill patients and their families. However, publication about how spiritual care is perceived and delivered at the end of life is rarely found. The objective of this paper is to explore how health professionals understand, view and provide spiritual care to dying patients and their family members. Methods: This paper is a systematic review using literatures explored through the electronic databases such as ProQuest, EBSCO, CINAHL, Springerlink, and DOAJ. Scientific qualitative/quantitative empirical articles in English about spiritual care at the end of life delivered by health professionals, published from 2008 - 2013, in all ethnic groups, were included. Exclusion criteria were discussion articles as well as reviews and editorials. Result: There were 51 articles, whereas only 17 articles in accordance with the inclusion and exclusion criteria. Conclusion: Nursing studies define spiritual care as referring to others, facilitating religious rituals and practices, and being present to patients. The goal is the patient's well-being, meaning the healing not only for their life, but also for their body; promotion of happiness and reduction of suffering. Spiritual care requires ethical beliefs, attitudes, intervention, and treatment decisions to be in accordance with determination of worldview or religion. Spirituality does not necessarily include adherence to religious practice, it may be connected with cultural background, and given the fact that societies may culturally varies, health professionals should not force patients into spiritual or religious practices. The professional expertise of spiritual counselors is needed and is an important ingredient of the interdisciplinary and encompassing approach that palliative care stands for.

Keywords: spirituality, palliative care, end of life

INTRODUCTION Spiritual care for palliative patients, near the end-of-life, is widely accepted as an important part of their total care (Tan et al, 2011). With physical decline and death in view, many seriously ill patients seek hope, meaning, and comfort in their connection to the transcendent (Balboni et al, 2010). Besides, as nursing concept is meant to treat patients as whole persons, there is always patients' desire to be approached as a person who is suffering, not as a faceless individual with bodily pain or a dehumanized diseased or malfunctioning organism (Broeckaert, 2011). Since the healing professions have roots in religious and spiritual traditions (Numbers & Amundsen, 1986), physicians, nurses, and other health professionals are required to bear greater responsibility for providing spiritual care, tasks that have been traditionally assigned to spiritual counsellors (The Association of Professional Chaplains et al, 2001). Spiritual care

has been added into nursing interventions to promote dignified dying (Jo et al, 2011). However, there has been controversy whether health professionals can or should provide this care (Daaleman et al, 2008). Besides, it is unclear how this care is actually delivered, since the definition of spiritual care is uncertain and has multiple interpretations. WHAT IS SPIRITUAL CARE? Some literature has differentiated between spirituality and religiosity. A religious understanding highlights the facilitation of individual meaning, connectedness, and inner peace and mostly related to religious rituals and beliefs (Shea, 2000). For the purposes of the current studies, the concept of spirituality is described as the web of relationships that gives coherence to our lives, which religious belief may or may not be a part of it. This web of relationships may include relationships with places, things, ourselves, significant others, and with a power beyond ourselves and is integral to our capacity to find meaning and purpose in our experiences (Tan et al, 2011). The definition of spiritual care which was endorsed in a consensus conference held on 17 - 18 February 2009 in Pasadena, is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred (Puchalski, 2009). Another studies have mentioned spirituality as an individuals relationship to and experience of the transcendent, whether through religion or other paths (Sulmasy, 2007). Nursing studies define spiritual care wider than religious rituals and practices, it includes referring to others, facilitating, and being present to patients (Ross, 2006). A number of nursing studies identify spiritual care giver as one of nursing role. In the United Kingdom (UK), the Nursing and Midwifery Council (NMC) require that nurses are able to assess and manage the spiritual needs of their patients (Nursing and Midwifery Council, 2002). Nurses as health professionals in the multidisciplinary team are best placed to attend to the spiritual needs of patients due to the nature of the relationship and the constant contact they have with patients (Nixon et al, 2013). THE BENEFICIENCE OF SPIRITUAL CARE TOWARDS PATIENTS The phenomenon of spirituality seems to have a beneficial influence on patients ability to cope with the process of dying (Renz et al, 2005). Spiritual insights help those with advanced illness cope with their disease, positively evaluate their life, influence their decisions regarding medical care and confront possible death (Bergman et al, 2011). Several studies have showed that, among severely ill patients, higher levels of spiritual well-being are associated with lower levels of various aspects of psychological distress, such as depression, hopelessness, a desire for hastened death, and suicidal thoughts (McClain, 2003). Besides, rigorously designed interview studies demonstrate that stronger spiritual and religious coping are associated with better social support, better physical health and better quality of life for patients with serious illness (Hanson et al, 2008). HOW HEALTH PROFESSIONALS DELIVERING SPIRITUAL CARE In the daily practice, there has been interest in and debate about how patients' spiritual needs should be met. Regardless of religious background, patientswillingness to discuss spiritual health issues may depend on the qualities of health professionals, such as openness, a nonjudgmental nature, respect for the spiritual views of others, and attitudes towards spiritual health. Patients views of how nurses or physicians should address spiritual issues may favour a direct, principle-based, patient-centred approach in the context of getting to know the

patient, rather than more structured approaches such as using spiritual-assessment tools (Ellis & Campbell, 2004). Spiritual care at the end of life is an interpersonal processes in accordance with human values and experiences, rather than a list of roles (Daaleman et al, 2008). Role of the nurses or physicians as a spiritual care giver could be (Vermandere et al, 2011): 1. Being present with the patients. Compassionate presence as a quality of spiritual care. It incorporates an intention to openness, to build connection with others, and to comfort with uncertainty (Puchalski et al, 2006). Being present, emphatizing, valuing, listening and loving, are major themes of spiritual care (Wright, 2002). 2. Understanding patients perspective of their illness as well as families and close friends. Through the opening eyes, it will be easy for health professionals to explore patients stories. What do the patients see about what is happening to them? What do they understand about their disease? What are their expectations? What does the family situation and social condition look like? Opening eyes allows health professionals to identify patients inner resources, such as belief systems, and outer resources, such as community and social supports. 3. Assessing patients' spiritual needs and being a facilitator and encourager of the patients' spiritual values. Nurses should try to be engaged with patients in terms of talking and listening since it offers opportunities to get a holistic understanding of patients which includes spiritual needs (Nixon et al, 2013). For example, if the patients say that they don't go to mosque and they don't regularly pray, health professionals can encourage them to look at and to think about what gives them strength and hope as those are spiritual aspects in ourlives. 4. Providing care beyond medical treatment intentionally towards patients, appropriate to patients' beliefs without imposing own beliefs and values. 5. Exhibiting a genuine and non-judgemental caring behaviour. Health professionals should be aware that its more than just the physical body and the pain, but psychosocial needs that includes social and emotional well-being, communication, self esteem, mental health and adaptation to illness is also important (Tan et al, 2011). Patients could be physically strong, yet be unwell in the spiritual sense. They could be tearful or feeling lonely. Therefore, showing sensitivity to patients' emotions is considered to be important aspect of delivering spiritual care. Health professionals should also respond to family members' spiritual needs such as: supporting them with end of life decisions, supporting them when feeling being lost and unbalanced, encouraging exploration of meaning of life and providing space, time and privacy to talk (Nixon et al, 2013). 6. Approaching spiritual discussions with gentleness, reverence, sensitivity, and integrity. 7. Engaging patients and family members to generate wholistic care plan based on individualized experience. There is increasing evidence that working with the whole family in a palliative care setting, has better outcomes for both patients and family members. Family will be an important resources for exploring information (and sharing information from health professionals point of view), meeting the needs of family carers, and planning care (Hudson et al, 2009).

While based on Hanson's studies (2008), the process of spiritual caregiving can be classified into 4 domains: Relationship Help relationships with those that patients love Help peace with loved ones Help relationship with God Help patients feel at peace with God Understanding Help patients to review the story of their life Help patients to be more aware and mindful of their life Help patients resolve fears of death/dying Help patients resolve concerns about suffering Help patients have hope Help patients recognize the significance/value of their life Help understand meaning of illness Coping Help patients have a sense of control over their life Help patients cope with their illness Practices Help patients attend religious/spiritual services Help patients in religious/spiritual practices Help patients with their prayer Help patients to better understand their faith Help patient by asking others to pray for them

BARRIERS IN DELIVERING SPIRITUAL CARE Health professionals should be aware of some barriers that may prevent us from delivering spiritual care optimally. Those barriers may come both from health professionals' and patients' side. Example of barriers that come from health professionals' side: 1. Feeling uncertain initiating spiritual discussions. There has been a fear and hesitation of alienating and causing discomfort in patients once spiritual discussions is initiated. 2. Fear that patients will misinterpret spiritual discussions as pushing religion or intruding their privacy. Although it is rarely found, there has been an opinion among health professionals that spiritual matters are no more in nurses or physcians domain, therefore it will be inappropriate to raise such intimate issues. 3. Struggle with the spiritual language, especially if nurses or physicians and patients have different belief systems. 4. Thinking that spiritual issues may less important than other medical concerns. 5. Belief that spiritual discussions will not make any difference to patients' lives. 6. Lack of spiritual awareness among health professionals. Barriers that come from patients' side:

1. Patients and family members being the 'wrong sort of person'. Some nurses or physicians describe them as people who 'unreachable' and 'difficult to get in touch with'. 2. Time as a limiting factor. 3. Hospital setting in which enough privacy can not be maintained. 4. Lack of discussion of the role of spirituality among care providers. 5. Lack of continuity of managed care, especially when patients have to face different member of health professionals team in a day.

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Additional SPIRITUAL CARE BASED ON ISLAMIC GUIDELINES During illness, the Muslim patient should set for himself these spiritual goals. (1) Muslims are expected to seek Gods help with patience and prayer, increase the remembrance of God to obtain peace, ask for forgiveness, give more in charity, and read or listen to more of the Quran. (2) Muslims repeat the saying To God we belong and to Him is our return to ease the shock of death. (3) Atonement (Tauba): this is done by experiencing a genuine sense of remorse for ones transgressions and a removal of the unhealthy effects of that state by turning to God and seeking divine grace through prayer, charity, and a sincere resolution not to return to the destructive patterns of the past. Patients need to make peace with God through religious duties in order to meet God free of sins, and also to make peace with relatives and friends. When a Muslim individual is dying, several things may be comforting to the patient and the family: (a) turning the patient on his/her right side to face Mecca; (b) letting those visiting the patient recite the prayer of allegiance to Allah, and encouraging the dying person to recite it also, if possible. If the patient is unable, another Muslim should recite it; (c) having friends and loved ones pray that mercy, forgiveness, and the blessing of Allah be given to the deceased; (d) reading specific verses from the Quran; (e) helping the dying person overcome the fear of death. DIGNITY THERAPY Dignity Therapy is a brief, individualized intervention to increase the sense of purpose, meaning and worth and reduce spiritual and psychological suffering for people with advanced cancer. The therapy can be delivered at the bedside by health care professionals. The therapist conducts an interview, which is based on the dignity model. Individuals are offered the opportunity to address aspects of life they feel most important, such as recounting parts of their life they feel proudest of, things they feel are or were most meaningful, the personal history they would most want remembered, or advice to their family and friends. Interviews last between 30 and 60 minutes. They are tape recorded, transcribed, edited, and quickly returned to the patient to share with people of their choosing. These 'generativity' documents allow people to leave behind something lasting. An important feature of the therapy is that it also has the potential to help friends and relatives in their bereavement. No significant differences across study arms, between the primary study outcome measures of pre and post distress, were found. However, on the secondary outcomes, comprised of the post study survey, patients reported that Dignity Therapy was significantly more likely to be experienced as helpful, improve quality of life, sense of dignity; change how their family sees and appreciates them and be helpful to their family.