6/28/2016 SPIRITUAL CARE: AN ESSENTIAL, BUT OFTEN NEGLECTED COMPONENT OF PALLIATIVE CARE SPIRITUALITY IN PALLIATIVE CARE

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1 SPIRITUAL CARE: AN ESSENTIAL, BUT OFTEN NEGLECTED COMPONENT OF PALLIATIVE CARE Rev. Richard W. Bauer, MM, LCSW INTERNATIONAL CHILDREN S PALLIATIVE CARE NETWORK BUENOS AIRES, ARGENTINA 21 MAY 2016 Key Concepts Spirituality and religion are related, but different. Caring for the human spirit is essential for quality, holistic patient care. Both children and adults need to attribute meaning to illness and death. Indigenous/traditional and Western beliefs and approaches to health, healing, illness, death and dying weave together in a very complex way around the meaning of a life-threatening illness. You don t have to pretend you know the answers, you just need to be present with patients and their questions. Talking about death, suffering can be counter-cultural in many settings. Caring for the soul requires that we be fully present in situations we cannot control and patient as a genuine meaning and a direction unfold. It means seeing familiar things in new ways, listening rather than speaking, learning from patients rather than teaching them, and cultivating the capacity to be amazed. It means recognizing the power of our own humanity to make a difference in the lives of others and valuing it as highly as our expertise. Finally it means discovering that health care is a front-row seat on mystery and sitting in that seat with open eyes. Making Health Care Whole Christina Puchalski, MD and Betty Ferrell (2010) Cure vs. Healing A cure is an expected, narrowly defined destination. With traditional health care, there is assessment, diagnosis, prognosis and treatment. The goal of a cure is to remove disease pathology. A cure is absolute, it is either present or absent. A focus of whole-person care is healing. Healing is understood as more of a journey, with often unexpected twists and turns. Healing involves the person s physical well-being, but also focuses on emotional, social and spiritual well-being and how these four components interact with each other. Healing may involve removing pathology, but it may also involve helping the person live and die peacefully with that pathology. As a part of healing, the caregiver accompanies the patient on their journey, meeting them where they are at any given time, and having a supportive role even to the end. There's always hope for healing. From resolution WHA 67.19: Bearing in mind that palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual (my emphasis) 1

2 What is Spirituality? Quest to discover the ultimate and transcendent meaning and purpose in life. The essence of the person the values, thoughts, emotions, motivations, dreams, hopes, and relationships that make a person a unique individual. Provides the individual with vitality, drive determination. Spirituality is not static. It changes over time and the person s ever evolving sense and understanding of self, the universe, and Other. Another consensus definition: Spirituality is a dynamic and intrinsic aspect of humanity through which persons seek ultimate meaning, purpose and transcendence and experience relationship to self, family, others, community, society, nature and the significant or sacred. Spirituality is expressed through beliefs, values, traditions and practices. (from a meeting with George Washington Institute on Spirituality and Health, Geneva, 2013) Me being with God, God being with me. (8 year old Namibian Christian boy) 1. Communion with self (self-identity, wholeness, inner peace) 2. Communion with others (love, reconciliation) 3. Communion with nature (inspiration, creativity) 4. Communion with a higher being (faithfulness, hope, gratitude (Chao et al. 2002) These ideas of communion and connectedness underscore the importance of relationship in the spiritual well-being of patients and the importance of spiritual care interventions that promote such connectedness What is Religion? From the Latin religare [re again; ligare to bind] Thus religions talk of experiences as the re-binding to God Religion is the belief in and/or worship of a supernatural being or power, especially a personal God or gods. Religion is a particular system of faith and worship Has both a communal and external aspect. and often an internal aspect, that is. spirituality People with similar spiritual beliefs often gather together for structured and systematic expression of their spirituality Spirituality is the Journey Religion is the mode of transport Dr Ann Meriman, Hospice Uganda 2

3 Importance of Spirituality Addressing spiritual issues can have a positive impact on the patient s emotional, social and physical well-being. In order to effectively address total pain in palliative care, we must be able to address a person s spiritual pain. Spirituality is an important aspect of a person s functioning and must be assessed and addressed to provide holistic, patient focused care and support Understanding a patient s spirituality is crucial to understanding him or her and how s/he deals with illness, death and bereavement. This is more than praying for patients. Addressing spiritual issues helps empower patients and facilitates communication and quality treatment planning that meets the individual s needs and desires. Helpful Concepts in Spirituality Meaning: This includes purpose and reason for life. This may be sought through a review of life, a review of relationships, a discussion on the meaning of dying, human existence, and suffering. Hope: When confronted with their own mortality, people often hope initially not to die or at least to live and die in a manner which is perceived as good. Spiritual hope may mean achieving a purpose in life, reconciliation with God, self, others. Relatedness: This means being able to commune with a higher being, God, or a system of faith. It may also mean relatedness to a religion or faith community, friends or family, nature or the cosmos Acceptance: Taking life on life s terms. It is what it is. Transcendence: That which allows a person to move beyond one s self, to experience a wider connectedness with the world, with the Source of Life (God). Spiritual Distress: Impaired ability to experience and integrate meaning and purpose in life through connectedness with self, others, art, music, literature, nature, and/or a power greater than oneself. (Puchalski, 2012) Spiritual distress can arise out of fear: Fear of death Fear of pain Unable to create meaning from suffering Fear of the unknown Fear of loneliness or abandonment Non-acceptance of death or disability Spiritual Distress may be evidenced by: Feeling of a sense of emptiness Showing emotional detachment from self and others Expressing concern, anger, resentment, fear over the meaning of life, suffering death Requesting spiritual assistance for a disturbance in belief system or faith (Puchalski, 2012) Spiritual Assessment: The FICA tool Faith, Importance, Community, Action F I C A Do you consider yourself spiritual or religious? Do you have spiritual beliefs that help you cope? If the patient responds no, you may ask, what gives your life meaning? What importance does your faith or belief have in your life? Have your beliefs influenced how you handle stress? Do you have specific beliefs that might influence your healthcare decisions? Are you part of a spiritual or religious community? Is this important to you? Is there a group of people your really love and are important to you? How would you like your healthcare team to address these issues in your care? Would you like to see your pastor or a chaplain? (Puchalski, 1996) 3

4 Guidelines for Spiritual Assessment Most of the current models of spiritual assessment cannot be used simplistically with children. They can assist the heath worker to check that they have considered different angles when assessing a child s spirituality. This might include: Reviewing a child s hopes, dreams, values, life meaning, understanding of prayer and ritual beliefs regarding death Do you belong to a religion? Does this religion help you? What makes you feel safe? Who/What do you trust? Do you have a hero? Who do you ask you biggest questions to? Who/What is closest to you heart? Who do you love the most? Children who are beginning to sense that they are dying often talk about going home or leaving. Talking about these feelings and exploring the journey with the child can be difficult but so important for the well-being of the child and their family. We can often help by simply asking, What is that like for you? Do not give false reassurance that s/he is not dying. Young children, and even older children often cannot use verbal language to express their beliefs or concerns. It is important that we use a child s language: play, art, drama, music. If we don t talk to children, in a developmentally appropriate way, about death and dying, then we: Convey a message of avoidance Allow this avoidance to lead to unhealthy feelings and emotions Allow unresolved worry and fears Allow increased anxiety and apprehension Develop seeds for resentment and distrust Create an opportunity for unhealthy lifelong coping patters Talking to Children Death, God, Spiritual Stuff Be ready for spurts when a child is ready Brief, simple answers Listen and accept feelings. Honest, simple explanations. Ok to use the words, die, death, dying. Prayer Do not suggest to an angry patient who has demonstrated negative feelings towards God or religion Do not impose your own beliefs or prayer on anyone. Ask the person what he or she wants then find find the appropriate person to meet these needs The PATIENT and not the health care provider must guide this process Can you describe what you would like to pray for? How do we know good spiritual care? Tradition: We have always done it this way. Policy: This is the way we are supposed to do it. Education: I was taught to do it this way Personal Experience/Trial and Error: I tried several ways and this one works best Intuition: Doing it this way feels right to me Research: There is evidence this is the best way to do it 4

5 Spirituality: Where are you? Before working with spiritual care with patients and their families, it is important to reflect on your own spiritual development and beliefs. Self-understanding and self-reflection is essential to provide quality spiritual care services Do you come from a specific religious or spiritual tradition? How will this impact your work? It is not the task of the health worker to evangelize or proselytize. Our task is to help the patient explore their spiritual concerns in their own way, at their own pace. Patient-centred care also includes spiritual care. Final Points: Care-givers may not understand or accept the religious beliefs of patients; still, respect the patient and their beliefs Spiritual needs may be more important to the wellbeing of the patient than medical or nursing care. The lack of quality spiritual care may result in significant pain for patient and family members Always ask the person about their spiritual rituals and practices, and what brings them comfort and peace HOSPICE & PALLIATIVE CARE: FROM RESOLUTION TO ACTION Reference: (2010) Bodek, Hillel. Spirituality in Palliative & End-of-Life Care Thank you! Muchísimas Gracias! Fr Richard W. Bauer, MM, LCSW richardbauermm@mac.com The Global Network on Spirituality and Health: The Health Care Chaplaincy Network (HCCN) 5