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Improving the Spiritual Dimension of Palliative Care: Advanced Interprofessional Spiritual Care
Betty Ferrell, PhD, RN George Handzo, BCC, MDiv Shirley Otis-Green, MSW, Christina Puchalski, MD, MS AAHPM, 2012
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What is Whole Person Care?
Transcends control of a disease process and the relief of symptoms Aims at full health, understood as the recovery of an integrated and authentic self Maintains focus on the patient as a whole person, regardless of how intractactable, difficult, time consuiming, expensive or challenging the patient’s problems are © cpuchalski
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Biopsychosocialspiritual
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Spiritual/Religious/Cultural Beliefs, Practices, and Rituals
May be dynamic in patient’s understanding of illness • Religious convictions/beliefs may affect healthcare decision-making • May be a patient need • May be important in patient coping, quality of life, and healthcare outcomes • Integral to whole-patient care © cpuchalski
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A Consensus Conference Convened February 2009
Guidelines for Interprofessional Spiritual Care: Improving the Quality of Spiritual Care as a Dimension of Palliative Care: A Consensus Conference Convened February 2009 Supported by the Archstone Foundation, Long Beach, CA. as a part of their End-of-Life Initiative. 5 © cpuchalski 5
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The NCP 8 domains of care Structure and Processes; Physical Aspects;
Psychological and Psychiatric Aspects; Social Aspects; Spiritual, Religious, and Existential Aspects; Cultural Aspects; Imminent Death; and Ethical and Legal Aspects. © cpuchalski 6 6
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Consensus Definition was Developed
“Spirituality 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.” © cpuchalski 7 7
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Final Conference Report
Puchalski, C., Ferrell, B., Virani, R., Otis-Green, S., Baird, P., Bull, J., et al. (2009). Improving the quality of spiritual care as a dimension of palliative care: The report of the consensus conference. Journal of Palliative Medicine, 12(10), DOI: =jpm Puchalski,C. & Ferrell, B. (2010). Making Healthcare Whole: Integrating Spirituality into Patient Care. West Conshohocken, PA: Templeton Press. © cpuchalski 8 8
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Conference Recommendations
Recommendations for improving spiritual care are divided into seven keys areas: Spiritual Care Models Spiritual Assessment Spiritual Treatment/Care Plans Interprofessional Team Training/Certification Personal and Professional Development Quality Improvement These seven key areas were developed from the original five focus groups from the Consensus Conference. © cpuchalski 9 9
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I. Spiritual Care Models
Recommendations Integral to any patient-centered health care system Based on honoring dignity Spiritual distress treated the same as any other medical problem Spirituality should be considered a “vital sign” Interdisciplinary Recommendations Spiritual care should be integral to any compassionate and patient-centered healthcare system model of care. Spiritual care models should be based on honoring the dignity of all people and on providing compassionate care. Spiritual distress or religious struggle should be treated with the same intent and urgency as treatment for pain or any other medical or social problem. Spirituality should be considered a patient vital sign. Just as pain is screened routinely, so should spiritual issues be a part of routine care. Institutional policies for spiritual history and screening must be integrated into intake policies and ongoing assessment of care. 5. Spiritual care models should be interdisciplinary and clinical settings should have a Clinical Pastoral Education-trained board-certified chaplain as part of the interprofessional team. © C.Puchalski 10
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Spirituality and Health Fetzer Health Advisory Council , 2011
Love/compassion Dignity Forgiveness Wholeness, full-self Other-regarding Relationship-centered Healing as transformational in context of relationship Humanity of providers and patients © C.Puchalski
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National Consensus Conference
Spiritual care models should be interdisciplinary and clinical settings should have a clinical pastoral education trained board-certified chaplain as part of the inter- professional team. Puchalski, C., Ferrell, B., Virani, R., Otis-Green, S., Baird, P., Bull, J., et al. (2009). Improving the quality of spiritual care as a dimension of palliative care: The report of the consensus conference. Journal of Palliative Medicine, 12(10), DOI: =jpm © cpuchalski
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Inpatient spiritual care implementation model
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Role on the Team Spiritual Care Generalist Vs.
Spiritual Care Specialist Handzo, G. F. & Koenig, H. G. (2004). Spiritual Care: Whose Job is it Anyway? Southern Medical Journal, 97(12), © cpuchalski
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II. Spiritual Assessment of Patients and Families
Recommendations Spiritual screening, history Assessment tools All staff members should be trained to recognize spiritual distress HCP’s should incorporate spiritual screening and history as a part of routine history/evaluation Formal assessment by Board Certified Chaplain Documentation Follow-up Chaplain Response within 24 hours All patients should receive a simple and time-efficient spiritual screening at the point of entry into the healthcare system and appropriate referrals as needed. Healthcare providers should adopt and implement structured assessment tools to facilitate documentation of needs and evaluation of outcomes of treatment. 3. All staff members should be vigilant, sensitive, and trained to recognize spiritual distress. All healthcare professionals should be trained in doing a spiritual screening or history as part of their routine history and evaluation; unlicensed staff members should report all witnessed pain or spiritual distress. 5. Formal spiritual assessments should be made by a board-certified chaplain who should document their assessment and communicate with the referring provider about their assessment and the plans of care. 6. Spiritual screenings, histories, and assessments should be communicated and documented in patient records (e.g., charts, computerized databases, and shared during interprofessional rounds). Documentation should be placed in a centralized location for use by all clinicians. If a computerized patient database is available, spiritual histories and assessments should be included. 7. Follow-up spiritual histories or assessments should be conducted for all patients whose medical, psychosocial, or spiritual condition changes and as part of routine follow-up in a medical history. 8. The chaplain should respond within 24 hours to a referral for spiritual assessment. © cpuchalski 15 15
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Terms: 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. NANDA, 2007 © C.Puchalski
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Clinical Presentations of Spiritual Distress
Questioning the credibility of one’s belief system. Demonstrating discouragement or despair. Inability to practice usual religious rituals. Ambivalent feelings (doubts) about beliefs. Expressing that he/she has no reason for living. Feeling a sense of spiritual 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. RN Central Online, 2007 © C.Puchalski
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Spiritual Diagnosis Diagnoses (Primary) Key feature from history
Example Statements Existential Lack of meaning / questions meaning about one’s own existence / Concern about afterlife / Questions the meaning of suffering / Seeks spiritual assistance “My life is meaningless” “I feel useless” Abandonment God or others lack of love, loneliness / Not being remembered / No Sense of Relatedness “God has abandoned me” “No one comes by anymore” Anger at God or others Displaces anger toward religious representatives / Inability to Forgive “Why would God take my child…its not fair” Concerns about relationship with deity Closeness to God, deepening relationship “I want to have a deeper relationship with God” Conflicted or challenged belief systems Verbalizes inner conflicts or questions about beliefs or faith Conflicts between religious beliefs and recommended treatments / Questions moral or ethical implications of therapeutic regimen / Express concern with life/death and/or belief system “I am not sure if God is with me anymore” Despair / Hopelessness Hopelessness about future health, life Despair as absolute hopelessness, no hope for value in life “Life is being cut short” “There is nothing left for me to live for” Grief/loss Grief is the feeling and process associated with a loss of person, health, etc “I miss my loved one so much” “I wish I could run again” Guilt/shame Guilt is feeling that the person has done something wrong or evil; shame is a feeling that the person is bad or evil “I do not deserve to die pain-free” Reconciliation Need for forgiveness and/or reconciliation of self or others I need to be forgiven for what I did I would like my wife to forgive me Isolation From religious community or other “Since moving to the assisted living I am not able to go to my church anymore” Religious specific Ritual needs / Unable to practice in usual religious practices “I just can’t pray anymore” Religious / Spiritual Struggle Loss of faith and/or meaning / Religious or spiritual beliefs and/or community not helping with coping “What if all that I believe is not true” © cpuchalski
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Spiritual Diagnosis Decision Pathways
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Patients’ Spiritual Needs
Love and belonging Meaning and purpose Appreciation of nature and beauty Spiritual/religious practices and guidance Positivity, gratitude and peace Resolution of issues involving life and death (National survey of US hospitals HCC) Flannelly, K.J., et al Hospital Topics, 2005 © C.Puchalski
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Terms: Spiritual Well-Being
Occurs through a dynamic and interactive growth process that leads to a realization of the ultimate purpose and meaning of life. (Hungelmann et al., 1996) 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 that can be strengthened. (Johnson, 2006) Spiritual well-being is the affirmation of life in a relationship with God, self, community and environment that nurtures and celebrates wholeness. (NICA, 1975) © C.Puchalski
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Spiritual Resources of Strength
Beliefs, values, practices that are supportive to patient Spiritual, religious support groups Hope Resiliency, good coping skills Finding meaning, purpose © C.Puchalski
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Can be spirituality be reduced to a diagnosis?
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Language: Talking to Colleagues
Reductionsim: Language of medicine, nursing Sharing stories: Language of chaplains, social workers The Challenge: How to blend the two…. Practical models, need to doc speak
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III. Formulation of a Spiritual Treatment Care Plan
Recommendations Screen & Access All HCPs should do spiritual screening Clinicians who refer should do spiritualhistories and develop appropriate treatment plans working with Board Certified Chaplain if possible Diagnostic labels/codes Treatment plans Support/encourage in expression of needs and beliefs Screen and assess every patient’s spiritual symptoms, values, and beliefs and integrate them into the plan of care. All trained healthcare professionals should do spiritual screening and history-taking. These caregivers should also identify any spiritual diagnoses and develop a plan of care. Detailed assessment and complex diagnosis and treatment are the purview of the board-certified chaplains working with the interprofessional team as the spiritual care experts. 3. Currently available diagnostic labels (e.g., National Comprehensive Cancer Network [NCCN] Distress Management/Pastoral Services guidelines, Diagnostic and Statistical Manual [DSM] code V62.89, and NANDA nursing diagnoses) can be used, but further work is needed to develop more comprehensive diagnostic codes for spiritual problems. 4. Treatment plans should include but not be limited to a. Referral to chaplains, spiritual directors, pastoral counselors, and other spiritual care providers including clergy or faith- community healers for spiritual counseling b. Development of spiritual goals c. Meaning-oriented therapy d. Mind-body interventions e. Rituals, spiritual practices f. Contemplative interventions Patients should be encouraged and supported in the expression of their spiritual needs and beliefs as they desire and this should be integrated into the treatment or care plan and reassessed periodically. Written material regarding spiritual care, including a description of the role of chaplains should be made available to patients and families. Family and patient requests specifically related to desired rituals at any point in their care and particularly at the time of death should be honored. Board-certified chaplains should function as spiritual care coordinators and help facilitate appropriate referrals to other spiritual care providers or spiritual therapies (e.g., meditation training) as needed. Spiritual support resources from the patient’s own spiritual/religious community should be noted in the chart. Follow-up evaluations should be done regularly, especially when there is a change in status or level of care, or when a new diagnosis or prognosis is determined. Treatment algorithms can be useful adjuncts to determine appropriate interventions. 10. The discharge plan of care should include all dimensions of care, including spiritual needs. © C.Puchalski 25
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III. Formulation of a Spiritual Treatment Plan (cont’d)
Spiritual care referral (BCC, pastoral counselor, spiritual director, clergy as appropriate) Documentation of spiritual support resources Follow up evaluations Treatment algorithms Discharge plans of care Bereavement care Establish procedure Spiritual care must extend to bereavement care. Palliative care programs should institute processes to ensure that systematic bereavement support is provided. Referral to bereavement counselors or services should be available as appropriate for loved ones and families after the death of the patient. Structured bereavement assessment tools should be used to identify needs for support and those at greatest risk for complicated grief. 12. Healthcare professionals should establish procedures for contact with family or loved ones following the death of a patient. This may include sending condolences, attending funerals, holding memorial services, or other rituals to offer support to and connection with to the family. © C.Puchalski 26
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Case example: Biopsychosocial-Spiritual Model Assessment and Plan
Ms. Harper is a 75 yo s/ cva with hemiparesis and mild cognitive impairment Physical Ongoing physical therapy, rehab Emotional Grief rxn over loss of previous state of functioning Supportive counseling, presence. Social Engage activist community in her care as much as possible Needs home health aid Financial issues about long term care Spiritual Meaninglessness, consider referral to pastoral counselor or chaplain, Explore ways to find meaning in current situation, meaning oriented therapy
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Talking About Spiritual Issues
Spiritual Screening Spiritual History Comprehensive Spiritual Assessment What underlies this is compassion… © C.Puchalski
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Spiritual/Religious Screening
A quick determination of whether a person is experiencing a serious spiritual/religious crisis and therefore needs an immediate referral to a professional chaplain. Good models of spiritual/religious screening employ a few, simple questions, which can be asked by any health care professional in the course of an overall screening. Fitchett, G., & Canada, A. L. (2010). The Role of Religion/Spirituality in Coping with Cancer: Evidence, Assessment, and Intervention. In J. C. Holland (Ed.). Psycho-oncology, 2nd Edition. New York: Oxford University Press. © C.Puchalski
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Spiritual Screening Do you have any spiritual beliefs that might affect your stay here at the hospital? Are there any spiritual beliefs that you want to have discussed in your care with us here? How important is spirituality in your coping? and “How well are those spiritual resources working for you at this time?” © C.Puchalski 31
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Spiritual History Taking
The process of interviewing patients, asking them questions about their lives in order to come to a better understanding of their needs and resources. The history questions are usually asked in the context of a comprehensive examination by the clinician who is primarily responsible for providing direct care or referrals to specialists, such as professional chaplains. Fitchett, G., & Canada, A. L. (2010). The Role of Religion/Spirituality in Coping with Cancer: Evidence, Assessment, and Intervention. In J. C. Holland (Ed.). Psycho-oncology, 2nd Edition. New York: Oxford University Press. © C.Puchalski
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Spiritual Assessment A more extensive [in-depth, on-going] process of active listening to a patient's story as it unfolds in a relationship with a professional chaplain and summarizing the needs and resources that emerge in that process. The summary includes a spiritual care plan with expected outcomes which should be communicated to the rest of the treatment team. Fitchett, G., & Canada, A. L. (2010). The Role of Religion/Spirituality in Coping with Cancer: Evidence, Assessment, and Intervention. In J. C. Holland (Ed.). Psycho-oncology, 2nd Edition. New York: Oxford University Press. © C.Puchalski
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Spiritual History Comprehensive
Done in context of intake exam or during a particular visit such as breaking bad news, end of life issues, crisis Done by the clinician who is primarily responsible for providing direct care or referrals to specialists such as professional chaplains. © C.Puchalski 34
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Spiritual History FICA (Puchalski, 1996, 2000, 2006)
Spirit (Maugins, 1996 ) Hope (Anandarajah, 2001) © C.Puchalski
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FICA Developed with a focus group of primary care physicians
Used in the social history section of H & P Tool used to invite patients to share about their beliefs and values Helps identify spiritual distress, conflict, meaning of illness, inner resources of strength Helps identify referrals (chaplain, meditation, journaling, music, spiritual direction, pastoral counseling, other spiritual resources) © C.Puchalski 36
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Social History Important relationships; sexual history
Occupational history Avocation interests Wellness/prevention: exercise, nutrition, spiritual beliefs, smoking, alcohol/drugs, seat belts, domestic violence, mood © C.Puchalski
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Spiritual History F - Do you have a spiritual belief? Faith? Do you have spiritual beliefs that help you cope with stress/what you are going through/ in hard times? What gives your life meaning? I - Are these beliefs important to you? How do they influence you in how you care for yourself? C - Are you part of a spiritual or religious community? A - How would you like your healthcare provider to address these issues with you? © C.Puchalski 38
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Ms. Smith 52-year-old female with breast mass. Has a strong family history of breast cancer. Her mother died of breast cancer when the patient was 18 years old. Her two sisters have breast cancer. © C.Puchalski
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Ms. Smith F - MD: Do you have any spiritual beliefs that help you in your life? PT: I find meaning in Nature. I - MD: How does that help you? PT: I feel at one with nature. Each morning I sit on my patio looking out over the trees in the woods and feel “centered and with purpose” MD: Do your beliefs affect your healthcare decisions? PT: If I am dying I would want to be in a hospice that has nature around it. C - MD: Is there a community that supports you in this. PT: Close friends who share her values A - After the discussion about belief, she sill try to meditate, focusing on nature, on a daily basis to increase her peacefulness and her ability to cope with whatever the biopsy shows. © C.Puchalski
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Share your course materials, lectures, tutorials, etc.
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Resources www.gwish.org www.coh.org www.healthcarechaplaincy.org
Education resources (SOERCE, National Competencies etc) Retreats in for Healthcare Professionals (Assisi, US) FICA Assessment tool--- online DVD Summer Institute in spirituality and health at GWU. June 2011 © cpuchalski
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