Part A: Section A.9 Spiritual Humility at the Time of Illness and - PowerPoint PPT Presentation

Part A: Section A.9 Spiritual Humility at the Time of Illness and Dying 1 Part A: Understanding Grief and Loss in Children and Their Families

Objectives o Understand how a person’s beliefs, culture, and spirituality, as well as background and experiences, might affect their response to communication of sensitive information. o Describe physician approaches to spiritual issues that families believe to be helpful when faced with life-limiting illness or death of a child. 2 Part A: Understanding Grief and Loss in Children and Their Families

Objectives (continued) o Demonstrate understanding of the specifics of different cultural or spiritual beliefs that may impact families and assist in their integration of the experience. o Know how to incorporate a chaplain as an essential member of the health care team. 3 Part A: Understanding Grief and Loss in Children and Their Families

Background o Spiritual beliefs may serve as a comfort and help ground a family in their grief at times of illness and death. o 90% of the US population practices spiritual or religious traditions. (Robinson 2006) o Clinicians should support and respect these beliefs. o Every attempt should be made to implement traditions that are essential or explain why they cannot be done in health care setting. 4 Part A: Understanding Grief and Loss in Children and Their Families

Background (continued) o It is important to understand the individual spiritual beliefs of patients and their families, because not everyone in a spiritual tradition believes all the teachings. o Parents and children may have different beliefs as well, so inquire and not make assumptions. o Include clergy from the family’s tradition(s) as early in the illness as possible. 5 Part A: Understanding Grief and Loss in Children and Their Families

Understanding the Family’s Perspective o Parents state they may rely on their spiritual beliefs to understand the meaning of their child’s health care experience and accept difficult news. o 60-80% of families had unmet spiritual needs (Feudtner 2003) o Four explicit themes are critical (Robinson 2006) o Prayer o Faith o Access to and support of clergy o Belief in the endurance of parent-child relationship beyond death 6 Part A: Understanding Grief and Loss in Children and Their Families

Resources to Provide Families o Health care providers need to embrace spiritual humility, as no one can understand all the religious or spiritual traditions in the world. o Medical provider as spiritual generalist – insightful about need for spirituality. o Access to clergy or spiritual specialists who can help guide and support families. o Access to multi-denominational chapel and services for place to pray and reflect. 7 Part A: Understanding Grief and Loss in Children and Their Families

Perspective of Health Care Professionals o Inquiring and respecting another’s spiritual belief is not being unfaithful to one’s own beliefs. Rather, it is being secure enough in one’s own beliefs to allow others to follow their beliefs. o We cannot possibly know all there is about another individual’s beliefs. o Spiritual humility allows us to acknowledge that we don’t know, but seek to understand. 8 Part A: Understanding Grief and Loss in Children and Their Families

Taking a Spiritual History o Allows families a segue into accessing resources that are a critical element of care. o Receipt of support from spiritual community. o Incorporate spiritual practices into the hospital setting. o Need to not make assumptions. Don’t assume the two parents or the parent and child may have the same spiritual beliefs. 9 Part A: Understanding Grief and Loss in Children and Their Families

Open the Discussion What role does spirituality or religion play in your and your child’s life? (Sulmasy 2002) 10 Part A: Understanding Grief and Loss in Children and Their Families

Taking a Spiritual History: FICA o Faith and Beliefs: Is there a particular faith(s) that you and your family are members of? Are there any beliefs important to you that you would like to share? o Importance: How would you rank the importance that spirituality plays in your life (Very important/ Important/ Not very important)? (Astrow 2001) (Puchalski, Larson, Post 2000) 11 Part A: Understanding Grief and Loss in Children and Their Families

FICA (continued) o Community: Describe your connection, if any, to a spiritual community. How do you see this community supporting you in times of challenge? o Addressed: How can the healthcare team support your child and family in your faith and spirituality at this time? Are there any issues about this that you would like addressed? (Astrow 2001) (Puchalski, Larson, Post 2000) 12 Part A: Understanding Grief and Loss in Children and Their Families

Taking a Spiritual History: SPIRIT o Spiritual belief system: Do you have a particular faith or sense of spirituality that is a part of your life? o Personal spirituality: How do you personally express your spirituality/connection to something greater than yourself? o Integration with a spiritual community: Is there a spiritual community you are a part of? Are there any regular religious or spiritual practices you are a part of through this community? 13 Part A: Understanding Grief and Loss in Children and Their Families

Taking a Spiritual History: SPIRIT (continued) o Ritualized practices and restrictions: Are there any restrictions or laws/rituals that you follow as part of your faith? o Implications for medical care: Can you see a role for spiritualty in what you are facing with your child now? Do you wish to incorporate a particular practice/have a member of your community come in to provide a practice for your child? o Terminal events planning: In the event that someone dies, what are any rules or beliefs/rituals that should be carried out? Please share with us. (Maugans 1996) 14 Part A: Understanding Grief and Loss in Children and Their Families

Questions Families Often Ask: Implicit Spiritual Themes o “Why is this happening ? Is my child’s illness (death) a failure on the part of me as a parent to protect my child adequately?” o “Is my child’s’ illness a punishment for something I have done?” o “Is my child’s illness (death) part of a bigger or divine plan?” o “Is there some greater good in relation to which my child’s death becomes more acceptable?” (organ donation, research options to help others) (Robinson 2006) 15 Part A: Understanding Grief and Loss in Children and Their Families

Concept of Spiritual Humility o It is impossible for any health care provider to know all there is about different religions or spiritual beliefs. o Begin as a spiritual generalist , and as you obtain more information you can refer to a spiritual specialist individualized to the family's needs. o Spiritual leaders can be invited to participate in the patient's care. 16 Part A: Understanding Grief and Loss in Children and Their Families

Overview of World Religions o Eastern Religions o Hinduism o Buddhism o Sikhism o Western Religions o Judaism o Christianity o Muslim and Islamic beliefs (Fosarelli 2008) 17 Part A: Understanding Grief and Loss in Children and Their Families

Eastern Religions o Hinduism o Buddhism o Sikhism 18 Part A: Understanding Grief and Loss in Children and Their Families

Hinduism o Hindus believe in God (Brahman). o Hindus believe God is within and transcends every created being. o Essence of each soul is divine. o To attain knowledge of one’s “True Self,” one must have minimal fears about living and dying. This is accomplished by surrendering entirely to God, offering everything one does as a sacrifice to Him. 19 Part A: Understanding Grief and Loss in Children and Their Families

Hinduism (continued) o Results of deeds done in past life are visited on one’s future life (i.e., law of karma). o Liberation from suffering occurs only through spiritual knowledge. o Death entails reincarnation repeatedly (according to karma), until one finally achieves union with Brahman, or one achieves a blissful state of liberation in paradise. 20 Part A: Understanding Grief and Loss in Children and Their Families

General Concepts to Consider in Hindu Beliefs o Determine how family wants information presented to the patient and amount of detail. o The father is often the major decision maker with the patient's mother following his instructions. o Family members should be asked about specifics for death rituals. o The timing of the funeral is often within 24 hours. o The patient's body is often cremated. o Many Hindus believe in reincarnation. 21 Part A: Understanding Grief and Loss in Children and Their Families

Buddhism o Buddha taught that suffering ( dukkha ) results from ignorance of how things really are ( dharma ). Things are not permanent but are always changing. o Suffering results from trying to hang on to the present, as if it will never change. o Belief that one is reborn, not reincarnated, because traditional Buddhism does not believe in a “True (unchanging) Self” as Hinduism does . 22 Part A: Understanding Grief and Loss in Children and Their Families

Buddhism (continued) o Death results in rebirths until greed, hatred, and delusion are eradicated, i.e. when a person becomes enlightened about the true nature of reality. o Compassion and wisdom are Buddhist moral values and lead to happiness. o Buddhists do not believe in a personal God. 23 Part A: Understanding Grief and Loss in Children and Their Families