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How Culture and Spirituality Influence Grief and Bereavement Associated with Loss & End of Life Care. Jeny Covill Chaplain North Valley Hospital January 29, 2015 1 Objectives: 1. Define the meaning of culture. 2. Identify the impact of culture on palliative care for patients. 3. Discuss grief and loss issues as they relate to end of life nursing care. 2 What is Culture, is it Relevant and How Do We Recognize it? 3 Culture & Cultural Identity “Culture itself is neither good nor bad. One's cultural identity is intrinsically neutral – it helps define who one is as part of a people, tribe, tongue or nation. Simply put, culture is the normal or acceptable thinking or behavior for a group of people.” Richard Twiss, One Church Many Tribes 4 Cultural Identity Can Include: Race & Ethnicity Religion & Spirituality Relationships Geography Age Health or Illness Gender Family System Economic System Language & Communication Politics Profession Social Clubs Art & Entertainment Hobbies & Interests Causes Abilities & Disabilities Military Service Experiences Other ... Jeny Covill, Chaplain, North Valley Hospital, Whitefish, MT. January 2015 5 Benefits & Characteristics of Culture and Cultural Identity Provide a sense of belonging, connection, tradition, safety and security. Provide a foundation for lifestyle and goal planning. Always changing and evolving. Guarded, honored and respected. Evoke a sense of pride and loyalty. Connect past, present, and future generations. 6 Possible Cultural Identifiers Language Behavior Attitudes Beliefs Symbols Rules / Boundaries Rituals Communication Appearance 7 Culture influences a person's response to illness, death, loss, grief and bereavement. A person's culture is reflected though: Treatment Plans Short and Long Term Goals Coping Skills Acceptance Communication Views on Disclosure Support Systems 8 Cultural Diversity “Instead of asking others to give up the ideas and traits that make them unique, we must come to value those ideas and traits, to see that those who are different from us have something to offer us.” Sosene Le'au, Called To Honor Him 9 Importance of Rituals “How families celebrate holidays, participate in seasonal activities, or interact at mealtime may seem unimportant. But according to many mental health authorities, rituals play a vital role in establishing and perpetuating a healthy lifestyle for families.” Marian Behan Hammer, “Rituals: Family Ties That Bind” Vibrant Native Life, Autumn 2002 10 Change & New Rituals Rituals, like culture, evolve with time and experiences. As we age, our health and family structures change. We need new rituals to keep a sense of meaning and belonging in our lives. 11 Respecting Culture and Cultural Identity While Creating New Rituals 12 Peru 2004 13 Cultural Assessments You can find an established cultural assessment tool or create your own. Refer to Palliative Care Team Recommendations. Many things make up ones culture and cultural identity. Culture is both unique and shared. Use observations and assessments as a guide for asking questions, not as a list of answers. 14 Chaplain Report Name – Gender – Age – Race / Ethnicity – Marital Status – Geographical Location – Residence – Diagnosis – Code Status – Religious Affiliation – Comfort Care or Hospice? Family Connection / Identity M, F Teens, Middle Age, Elderly, Community / Traditions / Rituals Family System / Support Local, Another County or State Home, Assisted Living, SNF, Chronic, Acute, Terminal DNR, FULL Spirituality / Community / Traditions This serves as a guide as I meet and visit with patients. It is also incorporated into Spiritual Care Assessments. 15 Additional Considerations Cultural assessments can also include: Hometown or Birthplace Hobbies or Social Clubs Relatives, Children, or Caregivers Daily Routines Use of Music, Sound Machines, Aromatherapy, Massage Entertainment – TV, Reading, Games, Mobile Devices Pets & Pet Therapy Food Preferences, Allergies, Prohibitions & Comfort Food Employment, Retirement, Military Service Level of Privacy & Modesty Views on Healing Beliefs Regarding Diagnosis, Treatments and Interventions: Pain, Loss, Grief, Organ Donation, Blood Transfusions, Feeding Tubes, Death 16 Self Assessment of Culture “Great difficulty arises when one culture sees itself as superior to others. Instead, we must understand that all the various members of human society need each other, that there is no superior or inferior culture.” Sosene Le'au, Called To Honor Him 17 Eye Exercises 18 Self Assessment Outcome 19 Local At Risk Populations Racial & Ethnic Minorities - American Indian, Russian, Hispanic, Filipino, African American, Jewish Military – Active Duty and Veterans Homeless - Resident, Transient, Runaways Prisoners - Inmates and Convicts on Parole, Probation and who have completed time. Seniors Minors Addicts Mental Health Issues Disabled Deaf 20 Culture & Spirituality Often culture and spirituality are so intertwined, separating one from the other could unravel the whole. They are separate, yet the same. Many cultures do not distinguish between them. Which came first? Which changes first? Which supports the other? Spirituality is a component of culture and cultural identity. Yet, culture is an expression of Spirituality. This image appears on the cover of the Dec. 17, 2013, issue of Advanced Functional Materials. Credit: Frank Moutos and Farshid Guilak 21 22 How Do We Define Spirituality? Definitions include being centered on religion, being centered on personal awareness and growth, either, or, all and both … and everything in between. There is no RIGHT or WRONG way. Everyone has their own definition. 23 Jeny's Definition “Spirituality is the sum of one's attitudes, customs and beliefs pertaining to their spirit-self and it's relationship with the soul, the body, the greater, governing, creative Spirit and all creation.” 24 Spiritual Care Screening Tool Patient Support System Family / Friend Support System 0 1 2 3 4 0 1 2 3 4 Spiritual Coping System 0 1 2 3 4 0 1 2 3 4 Patient Family / Friend Despair VS Hope 0 1 2 3 4 0 1 2 3 4 Dread VS Courage 0 1 2 3 4 0 1 2 3 4 Helplessness VS Empowerment 0 1 2 3 4 0 1 2 3 4 Curse VS Blessing 0 1 2 3 4 0 1 2 3 4 Meaninglessness VS Fullness of Life 0 1 2 3 4 0 1 2 3 4 Swindell Hodges, Chaplain Resident / Heart Care Service Line, The Methodist Hospital Houston, TX. 25 Spiritual Care Assessment – 7X7 Model WHOLISTIC DIMENSIONS Medical Dimension: Psychological Dimension: Psychosocial Dimension: Family Systems Dimension: Ethnic & Cultural Dimension: Societal Issues Dimension: SPIRITUAL DIMENSION Beliefs & Meaning: Vocation & Consequences: Experience & Emotion: Courage & Growth: Ritual & Practice: Life in Community: Authority & Guidance: From Assessing Spiritual Needs by George Fitchett, pp. 42-50. 26 Simple Spiritual Assessment A simple assessment tool for nursing care. Any 'no' answer could lead to a referral for a spiritual care visit or consult. 1. Does the patient have a sense of meaning and purpose in their life? 2. Does the patient have a sense of love and belonging? 3. Does the patient have a healthy freedom from guilt and shame? Rev. Pam Roberts Director of Education Centered Life: Education, Counseling & Spiritual Care Colorado Springs, CO 27 Spiritual Impacts of Injury, Illness and Trauma Three Levels of Spirituality 1. Spirituality of Light 2. Spirituality of Cloudiness 3. Spirituality of Darkness “Developing an Adequate “Pneumatraumatology”: Understanding the Spiritual Impacts of Traumatic Injury” Duane R Bidwell, M.Div., L.S.T.D. Texas Christian University 28 3-Step Approach Through the Cloudiness Step 1: Help patients share about their views of their faith and how that faith is challenged by their circumstances. Offer reflective listening and gentle questioning. Step 2: Help patients share about the pain they are experiencing. Not only physical pain, but also pain of seeing their faith in a new way and letting go of old beliefs that don't fit anymore. Utilizing community is effective in this step, whether its family members, clinical staff, palliative care team, or support groups. Step 3: Help patients look to the future, integrating their illness, injury, trauma or painful experience with a new courage and freedom to practice life and faith differently. Help patients by asking “What will be different?” Help patients “story themselves” into the future. “Developing an Adequate “Pneumatraumatology”: Understanding the Spiritual Impacts of Traumatic Injury” Duane R. Bidwell, M.Div., L.S.T.D. The 3-Step Approach is Bidwell's reflections on Walter Brueggermann's model and writings found in “Hope Within History” 29 Spiritual Care Interventions Be present. Be a compassionate listener. Provide validation and encouragement. Serve as an advocate and / or liaison. Provide resources. Provide prayer, meditation, blessings and readings from sacred texts. Facilitate / assist with rituals. Facilitate talking circles for sharing memories. Make referrals. Provide support for family and friends. Coordinate care with patient's pastor, priest or faith group. 30 Cultural and Spiritual Considerations of Communication & Decision Making Things to consider: Ability to participate and understand terminology Ability to comprehend what is happening Is English their primary language? Availability of non-family interpreters Conversation style – Direct or Indirect Views on privacy, personal space, touch and eye contact Relationship with nurses, doctors, and other team members Views on healthcare in general Views on acceptance, claiming, and identifying illness. Views on autonomy and family structure values Have supportive, connective routines, rituals or beliefs been affected? If so, has it affected the patient's ability to be 'present'? 31 Roles: Who Else Is Involved Ask, Ask, Ask Who is involved in care and what are their roles? Who are considered family? Who are the caregivers? Who make decisions? Who are included in discussions? Who are the peacemakers? Who need care themselves? Who provide spiritual support or strength? Are there complicated relationships and roles? Is anyone missing? Are roles changing and evolving with the patient's health, culture and spirituality changes? Is full disclosure to all involved acceptable? 32 Language to Avoid Avoid using any kind of cliché. Avoid minimalizing. Avoid confusing or unknown terminology. Avoid phrases that have more than one meaning. Avoid statements that add or remove value. Be a good learner. Let patients and family members be the experts on how they feel and view their situations. Ask questions. 33 Loss, Grief and Bereavement 34 Change Leads to Loss Various types of loss include: Material Loss – loss of a tangible object or familiar surroundings Relationship – loss of emotional or physical presence Intrapsychic – loss of emotionally important image of oneself Functional – loss of muscular or neurological functions of the body Role – loss of a specific social role or position in a group or network Systemic – loss when a whole system has to shift Additional variables include: avoidable, unavoidable, temporary, permanent, anticipated, unanticipated, leaving, being left … Kenneth R. Mitchell and Hebert Anderson 1983 35 All losses lead to Grief. Grief is a normal, emotional response to the loss of something or someone important. 36 Grief – A Tangled Ball of Emotions H. Norman Wright 37 Clinical Implications of Grief 1. Grief is experienced psychologically, behaviorally, socially, physically and spiritually. 2. Grief is constantly changing with time. 3. Grief is natural and expectable. 4. Grief is a reaction to all types of loss. 5. Grief is dependent upon the individual's unique perceptions of loss. “Clinical Incident Stress Management: Grief Following Trauma” (Rando 1993). 38 Grief Stages and Models Elisabeth Kubler-Ross Model of Grief (1969) 1. Denial 2. Anger 3. Bargaining 4. Depression 5. Acceptance Engel's Stages of Grief (1964) 1. Shock and disbelief 2. Developing awareness 3. Restitution – Rituals about the loss 4. Resolution – Preoccupied with loss 5. Recovery Bowlby 4 Phases of Grief (1980) 1. Numbness and denial 2. Emotionally yearning, protesting the loss 3. Cognitive disorganization, emotional despair 4. Reorganizing, reintegrating self 39 Characteristics and Dynamics of Grief Grief is universal Grief and grieving is intentional Grief begins with birth and ends with death Life is a series of attachments and separations Grief is a lifelong experience of learning to live with limits Grief is revisiting old losses with each new loss Grief includes: Numbness and shock Emptiness and loneliness Rev. Pam Roberts Fear and anxiety Director of Education Guilt and shame Centered Life: Education, Counseling & Spiritual Care Colorado Springs, CO Anger Sadness and despair Physical pain and discomfort 40 Grief is a Form of Honor “Grief is not a sign of spiritual or emotional weakness. It is a sign that we are human beings and that we are but flesh. It is also the ultimate form of honor, in that our grief shows how valuable the person that has died was and is to us. Grief is a type of closure that allows us to draw a line between what was, what is now, and what is to come. The more important the person was to us in our lives, the more impacted we will be by the loss.” Qaumaniq & Suuqiina, “Warfare by Honor: The Restoration of Honor … A Protocol Handbook” 41 Types of Grief Anticipated Grief – Grief that comes with anticipating a perceived or expected future loss. Normal Grief Complicated Grief – Chronic, delayed, exaggerated, masked Disenfranchised Grief – Loss that can not be openly acknowledged or socially sanctioned. 42 Mourning & Bereavement Mourning is generally the outward social expression of loss resulting from death. It is strongly influenced by culture. Bereavement is the period of grief and mourning following a death. It includes the period of processing and adjusting to the loss as well as creating a new way of life. A person's culture and spirituality are a large factor in how they experience change, loss, grief, mourning and bereavement. 43 End of Life Loss Affects Everyone Change and loss affect everyone, everywhere, all the time. Grief associated with loss is ongoing, normal, natural, and expected. Everyone grieves differently according to their experiences, attachments, culture and spirituality. In End of Life and Palliative Care, everyone will experience losses … patients, family members, friends, caregivers, nurses and other healthcare professionals. Patients benefit greatly from an interdisciplinary approach to screening and assessing loss, grief and bereavement. 44 Nurse's Role in Palliative and End of Life Care Assess a patient's grief. Consider their culture and spirituality, including rituals, communication, decision making, and the roles of their support system. Assess self. Consider reflections of personal grief and personal attitudes toward 'opposing poles' regarding cultural, spiritual and emotional responses to situation, treatment, loss, grief and bereavement. Assist patient with grief. Support survivors. Communicate with interdisciplinary team as needed. Self-care. 45 Rev. Jeny Running Brook Covill is a Chaplain at North Valley Hospital in Whitefish, MT. She is an ordained minister with Indigenous Messengers International. She is the founder of First Nations Monday, an international prayer mobilization network focused on promoting prayer and consideration for First Nations people and those serving in Native Ministry. Formerly she hosted a radio program, Across Turtle Island. She is a 2010 Nominee for Aboriginal Peoples Choice Music Awards (APCMA) for Best Aboriginal Music Radio Program & Recipient of the 2011 Silver Arrow Award for Outstanding Contribution to Native American Radio. Jeny is enrolled with the Amonsoquath Tribe of Cherokee and a member of the Paint Clan. She is married with two children. She enjoys farming, ranching, single action shooting, beading, and attending local rodeos and pow-wows. Jeny serves as a volunteer with the Missing In America Project (MIAP) and is a member of the Whitefish Ministerial Association. Contact Information: [email protected] or (406) 863-3585 46