Understanding and Improving Spiritual Health with Palliative Care Clients and Health Care Providers Presentation For the CHPCA Webinar Series on Spiritual Care Rev. Dr. Peter Barnes October 23 rd, 2013
Spirituality The term Spirituality refers to the direct experience of the sacred. Walsh (1999),3. And Kenneth Pargament says Spirituality is a search for the sacred. Pargament(2007),32. It may imply and invite relationship beyond oneself.
A Consensus Definition of Spirituality 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. ( Improving the Quality of Spiritual Care as a Dimension of Palliative Care: A Consensus Conference Convened February 2009, C. Puchalski and B. Ferrell)
Palliative Care
Suffering Society wants to wipe away pain Reality is to be human is to suffer Society denies suffering, aging and death Difficult to deal suffering Under stress and illness go to earlier stage of coping with suffering more subjective
Outline Introduction Presentation in Parts: 1. Spiritual Domain/Total Pain-Holistic 2. Screening and Assessment-Identification 3. SC Plan/IPC Plan-Collaboration 4. Scopes of Practice in Spiritual Care 5. Grief and Bereavement Care Comments and Questions Conclusion
The Gravy Metaphor I want you to think of your life and acknowledge and understand, Spiritual Care of Palliative/End-of-Life Care Clients. Now imagine you are making gravy: flour and water mixed together in a bottle and poured slowly into the stock. You see the mixture getting thicker and smooth. In this presentation it s like your Spiritual Care, is deepened, warmed, connected, with loving, and nurturing. Done intentionally with care.
Your Objectives/expectations:???
Part One: Spiritual Domain/Total Pain- Holistic Care
Cecily Saunders, MD (quoted in Puchalski & Ferrrell, Smith, 2010) I realized that we needed not only better pain control but better overall care. People needed the space to be themselves. I coined the term total pain, from my understanding that dying people have physical, spiritual, psychological, and social pain that must be treated. I have been working on that ever since.
Aspects/Domains of Holistic Care Physical Psychological Social/Cultural Spiritual Adapted from: Domains of Issues Associated with Illness and Bereavement in A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice. CHPCA, March 2002, page 15.
Aspects/Domains of Holistic Care Physical, e.g. -Disease management -Pain & other symptoms -Function -Nutrition habits -Physical activity Psychological, e.g. -Personality -Psychological symptoms -Emotions -Control & dignity -Coping responses -Self image/ self esteem -Loss & Grief Social/Cultural, e.g. -Finances -Relationships -Personal routines -Recreation -Vocation -Rituals -Legal issues -Family caregiver support -Practical Spiritual, e.g. -Meaning & values -Existential issues -Beliefs -Spirituality -Rites & rituals -Symbols & icons -Loss & Grief -Life transitions -Religions Adapted from: Domains of Issues Associated with Illness and Bereavement in A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice. CHPCA, March 2002, page 15.
Why Spiritual Care Matters When one is truly present to another there is: An alleviation of loneliness An affirmation of one s authentic self and invitation to wholeness Potential for spiritual bonding A deeper sense of our common humanity A recognition and acknowledgement of the other as person An invitation to self-transcendence Possibility for greater self reflection & self revelation Sharing on a deeper level, a spiritual level [Butler]
Basic Interprofessional (IP) Care Model Before we can propose and explore assessment models and ways to track these issues, it is essential for the IP Team to have a basic care model from which the practice can be based. (Puchalski and Ferrell, p. 63)
The Casita Resilience Model (Vanistendael, 2007) The model advocates a balance between the management of difficult and negative events and the ability to manifest positive attitudes and perspectives A compelling aspect of this particular model is that at the foundation of the house is the fundamental acceptance of the person, not the person s behaviour. Our work as palliative care professionals is to witness and support people as they face profound situations. (Puchalski and Ferrell, 2010, p. 64)
The Casita Resilience Model (Vanistendael, 2007) House Diagram (Puchalski and Ferrell, 2010, p. 64)
Peter Barnes: Spiritual Pathways Associates
Patient/Family-Centred Spiritual and Contemplative Practice Model This model is a self-directed work team approach to patient care, in which the team works collaboratively and with a less hierarchical attitude than one often sees in transprofessional team functioning. Here there is an acknowledgement of roles as well as a sharing of expertise and trust in the combined efforts of the team: the whole is more than the sum of its parts. (Puchalski and Ferrell, 2010, p. 66)
Patient/Family-Centred Spiritual and Contemplative Practice Model cont d A result of this type of interaction is that care planning (the IP Care Plan) can become reflective of the true needs of the patient and family. The team is then striving for the kind of comprehensive quality care that is needed for best practice to occur. (Puchalski and Ferrell, 2010, p. 67)
Patient/Family-Centred Spiritual and Contemplative Practice Model Circle Diagram (Puchalski and Ferrell, 2010, p. 67)
Peter Barnes: Spiritual Pathways Associates
Spiritual Healing presence is the condition of being consciously and compassionately in the present moment with yourself, another or with others, believing in and affirming their potential for wholeness, (even in their dying) wherever they are in life.
Value of Spirituality Strong faith, spiritual practices, ritual observances, prayer, and the felt presence of one s God and spiritual community often can transform anguish into bearable suffering. Griffith (2005)
Religion In particular it implies a concern with the sacred and supreme values of life. Walsh (1999),3.
Part Two: Screening and Assessment- Identification
Spiritual Assessment Understanding the other not fixing Assess through relationship-inviting story Exploration of meaning for client Evolving process spiritual pathway Being present no need for talking
Spiritual Assessment Examples Diagnoses (Primary) Key feature from history Example Statements Existential Abandonment God or others Anger at God or others Concerns about relationship with deity Conflicted or challenged belief systems Despair / Hopelessness Grief/loss Guilt/shame Reconciliation Isolation Religious specific Religious / Spiritual Struggle Lack of meaning / questions meaning about one s own existence / Concern about afterlife / Questions the meaning of suffering / Seeks spiritual assistance lack of love, loneliness / Not being remembered / No Sense of Relatedness Displaces anger toward religious representatives / Inability to Forgive Closeness to God, deepening relationship 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 Hopelessness about future health, life Despair as absolute hopelessness, no hope for value in life Grief is the feeling and process associated with a loss of person, health, etc Guilt is feeling that the person has done something wrong or evil; shame is a feeling that the person is bad or evil Need for forgiveness and/or reconciliation of self or others From religious community or other Ritual needs / Unable to practice in usual religious practices Loss of faith and/or meaning / Religious or spiritual beliefs and/or community not helping with coping My life is meaningless I feel useless God has abandoned me No one comes by anymore Why would God take my child its not fair I want to have a deeper relationship with God I am not sure if God is with me anymore Life is being cut short There is nothing left for me to live for I miss my loved one so much I wish I could run again I do not deserve to die pain-free I need to be forgiven for what I did I would like my wife to forgive me Since moving to the assisted living I am not able to go to my church anymore I just can t pray anymore What if all that I believe is not true
Spiritual Pain Outward symptoms of Fear Bitterness Depression Hopelessness Rage Hatred Vengefulness Spiritual Pain: Anger Despair Loneliness Confusion Apathy Helplessness Shame Spiritual pain can affect the client s ability to move through the tasks of dying even more profoundly than can physical pain. ( My Gift: Myself: A Step-by-Step Guide to Becoming a Hospice Voluneer by Joanne Chitwood Nowack, 1997, p. 102-103.)
Assessing Meaning & Change Possible Indicators of Grief Process i.e. questions or expressions of inner conflict: About the meaning or purpose of his/her pain or illness. About the meaning or purpose of his/her life. Expressions of a sense of injustice or being treated unfairly. Expressions of hopelessness and despair. Withdrawal from, or loss of relationships. Evidences of grief, including anticipatory grief. Evidences of a lack of acceptance of changes and losses. (Adapted from Chaplaincy Care Volunteer Training Manual HealthCare Chaplaincy, p. 17)
Five Spiritual Needs in midst of life: Recognition Companionship Hope Purpose Meaning
Self-Spiritual Assessment Tool What is significant in your life right now? What nourishes your spirit? How do you describe the purpose for which you live your life? What is your source of strength when you feel afraid or need special help? How would you describe your relationship with yourself? What best describes your relationships with other people? How would you describe your relationship with God, nature, creation, the mystery of life? What inspires you to be creative or how do you describe your creativity? What gives you hope or on what hope do you build your life? What gives you the greatest sense of belonging? What would you let go of for a moment in order to feel really good and really happy right now?
Part Three: Spiritual Care Plan/ Interprofessional Care Plan- Collaboration
Spiritual Pathways Over thousands of years, religious traditions have developed pathways to assist individuals in their attempts to hold on to the sacred. People can construct their own non-traditional pathways as well. Pargament (2007),78.
Spiritual Needs Meaning and purpose to life A sense of belonging Relationship to self/others/god/sacred Ultimate Being Hope Creativity
Spiritual Distress Occurs when the person is out of harmony or out of their comfort zone soul pain Behaviors guilt anger or resentment sadness or grief lack of meaning and purpose powerlessness fear of death religious doubt despair/hopelessness feeling life or God has been unfair
III. Formulation of a Spiritual Treatment Care Plan Recommendations Screen & Access All HCPs should do spiritual screening Diagnostic labels/codes Treatment plans Support/encourage in expression of needs and beliefs
III. Formulation of a Spiritual Treatment Care Plan Spiritual care coordinator Documentation of spiritual support resources Follow up evaluations Treatment algorithms Discharge plans of care Bereavement care Establish procedure
Part Four: Scopes of Practice in Spiritual Care
Spiritual assessment/spiritual history taking, & its impact on scopes of practice. The spiritual history is the gathering of information, whereas the spiritual assessment is a basis for a treatment plan The spiritual history is the foundation for the referral to the spiritual care specialist and the subsequent spiritual assessment. Together the spiritual history and the spiritual assessment are foundational to the interprofessional care plan. In summary the spiritual assessment goes deeper into the resident s spiritual life so that the spiritual care specialist is able to formulate a spiritual care treatment plan.
Collaborators All of you in the healing enterprise are God s collaborators in making this a better world more compassionate, gentler, more caring, and more sharing we need each other to become truly free, to become human, and enjoy the spiritual well-being of our creation in relationship to God and each other. Tutu, Address to WHO, May 20, 2008.
Healing in Palliative Care: Becoming whole, a life-long journey of becoming fully human, involving the totality of our being: body, mind, emotion, spirit, social and political context, as well as our relationships with others and with the Divine. Healing does not necessarily mean being happy or getting what we think we want out of life; it means growth, often with pain. Becoming our authentic self, releasing old unreal self-images, discovering who we really are, not what we think we should be, knowing why we are here and what we really value, restoring our ability to heed our aspirations.
Healing Presence You cannot do healing presence you become healing presence, expressing it gently yet firmly in various ways: Listening, holding, talking, being silent, being still, being in your body, coming home to yourself, being receptive You can deepen your healing presence by: slowing down, doing only one thing at a time, reminding yourself regularly to come back to the present moment You can encourage healing presence by being: appreciative, forgiving, humble, kind. Miller, EJ and Cutshall, SC. 2001. The art of being a healing presence. A guide for those in caring relationships. Willogreen Publishing.
Exercises: Breath and Music Awareness of your breath in order to focus Recall a tune that lifts your spirit or evokes a positive memory.
Wounded Healer What does it mean to be a wounded healer and value in palliative care? What does it suggest about my attitude towards weakness, deficiencies, vulnerability and even death?
Henri s words And where I am injured, I touch my own heart, my real identity. I surrender the illusion that I am perfectly healthy, strong and complete. I acknowledge my broken self. This enables me to remain vital and more human, compassionate and gentle. At the sites of my injures lie also my treasures. That's where I am in touch with my real identity and my vocation. There I also discover my potential.
Being In Life In the stillness, in the solitude, in the being there is life. Energizing life, reaching deep into the core, the centre, the self. Nurturing heart, nurturing love of self and others. Responding in faith by being real, genuine. Believing in oneself, created whole, well, full. No void to be filled, no emptiness, a complete package. Life is unwrapping the package, finding truth, finding home within. No searching, no escaping, discovering peace, wholeness. From the womb we ve come and to the earth womb we return. Remaining, living, connected by the cord, the thread of life the heart beat. Life pulsating in beautiful rhythm, music to the ear. The beat of life plays on and on and on. Peter Barnes, July 14th, 2007 Anamcara, Cupids, Nfld.
The Cave The Cave is the place of rebirth, that secret cavity in which one is shut up in order to be incubated and renewed. C.J.Jung
Spiritual Care Encourages the Facing of a Deeper Pain The explosion of anguish leads us to poverty and humility. It is this recognition of our brokenness and of our wounds which takes us off our pedestal: in our own eyes, and sometimes in the eyes of others, we have been plunged into the pit. But if we are helped, we can discover the gift of these truths: we are no different from those who try to serve; we too are broken and wounded like them; in a way we had not realized before we are truly together brothers and sisters; we are a wounded people; we can love each other, forgive each other and celebrate together our oneness. Vanier (1988) p.92-93.
Desmond Tutu at WHO You see, we faith and health have been together a very long time. Health is not only freedom from suffering and illness Perhaps it would be good for us to include the recognition that there is an intrinsic relationship between God and humankind, which can be acknowledged as spiritual well-being? Perhaps one day this notion of well-being can be included in the WHO definition of health? Desmond Tutu, Address to WHO, May 20, 2008.
Taking Your Spiritual Pulse How are you within?
Spiritual Essentials Spiritual Pathways Reconciliation Rituals Compassion Recognition of guilt, love, suffering, anger Hope: faith and courage Sacred Texts Humour
Part Five: Grief and Bereavement
The WHO, 2007 asserts that ideally, palliative care services should be provided from the time of diagnosis of life-threatening illness, adapting to the increasing needs of cancer patients and their families as the disease progresses into the terminal phase. They should also provide support to families in their bereavement.
Grief and Bereavement Process If Palliative Care needs to begin at the time of diagnosis of a life-threatening illness, and Bereavement is an expected service, as stated by the WHO, then Grief Care may also begin at the time of diagnosis of the lifethreatening illness because this is when the Anticipatory Grief begins and the Change and Transitions begin, i.e. the Grief Process.
Counsellors Familiarity with Bereavement (Grief) Counselling Theory Grief Counselling Theory 1. Stage Theory (Kubler- Ross, 1969) Percentage 42.8% 2. Task Theory (Worden) 28.2% 3. Meaning Making Theory (Neimeyer) 25.5% 4. No familiarity 40%
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