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    SPIRITUAL CARE and END OF LIFE CHOICES 4th Annual Palliative Care Conference June 15, 2010 Catherine F. Garlid, MDiv, BCC, ACPE

    Slide 2:End of Life Choices

    Living well How to die treatment choices, acute care or palliative care Where to die When to die? Whom to be with To prepare or not to prepare Farewells (rituals, personal time) Funeral or memorial planning Whose job? Choosing not to choose

    Slide 3:What makes for good end of life decision making? A health care team you can communicate with Discussions with family and loved ones Advance Care Planning and Directives

    Slide 4:90% of Americans express a desire to die at home As of 2002 only of these were able to Why? (Duffy, Connecticut Medicine, 2002)

    Background

    Slide 5:Patients want their spiritual needs addressed but perceive their needs are not satisfied. (1999 Mayo Patient Expectations survey. Balboni 2007) 90% of people believe in a higher being; 94% of patients feel that their spiritual and physical health are equally important (Mueller Mayo Clin Proc. 2001)

    Background

    Slide 6:Background

    Spiritual well-being has been negatively correlated with loneliness (Miller 1985) and anxiety (Kaczorowski 1989) Meeting spiritual needs near the EoL may help increase QoL (Hermann 2007) Religious involvement is associated with less depressive symptoms and better adjustment to illness (Smith et al. 2003) Religion and spirituality are positive indicators in the development of seniors sense of personal integrity (Little, Brown 2002)

    Slide 7: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 Care as a Dimension of Palliative Care: The Report of the Consensus Conference, 2009

    Defining spirituality

    Slide 8:What is Spiritual Care?

    A response to the universal human need to Affirm relationships to self, others, nature, and/or the holy Find meaning in the midst of lifes transitions, illnesses, crises and suffering Embrace transcendent values such as hope, creativity, compassion, faith, peace and justice

    Slide 9:It is play It is imagination It is day dreaming It is listening to and telling stories It is learning to comfort yourself in the dark It is wishing your friend wouldnt feel so sad It is asking why and not being satisfied with the answers It is trusting someone trustworthy It is belonging and feeling attached

    Slide 10:Spiritual Caregiving

    Spiritual caregiving is understood as the ability to legitimize, to empathize and respond [in the moment] with common sense to any human emotional or spiritual experience.Angelika Zollfrank Studies being done related to patient satisfaction are showing that patients do not distinguish between emotional and spiritual needs; they see themselves as a single self.

    Slide 11:Why Spiritual Care and not Pastoral Care?

    Spiritual Care is inclusive of religious and spiritual traditions other than Jewish and Christian Pastoral Care is usually associated with the practice of a religion Everyone has a spiritual life Not everyone has or practices a religion

    Slide 12:What about religion?

    Religion provides a way to express spirituality that offers structure, symbolic language, traditions, deep historical and cultural roots, community, a context in which to embrace mystery and the unknowables, opportunities to serve and give to others, rites and rituals for important life passages, and a context for the worship of God or contemplation of the holy Very few people are indifferent to religion!

    Slide 13:Spirituality in Palliative Care: Shift from Healing to Cure

    Healing is distinguished from cureIt refers to the ability of the person to find solace, comfort, connection, meaning, and purpose in the midst of suffering, disarray, and pain. The care is rooted in spirituality using compassion, hopefulness, and the recognition that, although a persons life may be limited or no longer socially productive, it remains full of possibility. Concensus Report

    Slide 14:Identifying Spiritual Concerns

    Existential concerns: Lack of meaning Questions about ones own existence Questions about the meaning of suffering Fear of dying Abandonment (by God or others) Loneliness Being or feeling forgotten Lack of relatedness I am the only one left in my family. And God has forgotten about me.

    Slide 15:Identifying Spiritual Concerns

    Conflicted or challenged beliefs systems Verbalizing inner conflicts about beliefs or faith: I said my prayers and was a good person all my life. Why is God not listening to my prayers? Conflicts between religious beliefs and recommended treatments What would my rabbi say about stopping chemo?

    Slide 16:Identifying Spiritual Concerns

    Guilt and shame Feeling or knowledge that one has done something wrong or evil Feeling that one is bad or evil Belief in a punishing God Harsh judgment of oneself

    Slide 17:Chronic religious struggle in older adults leads to poorer QoL and emotional adjustment to illness and may be associated with poorer recovery and increased mortality (Pargament et. al. Journal of Health Psychology 2004. Fitchett et. al. 2004)

    Slide 18:Some Spiritual Health Interventions

    Compassionate presence; Listening with the heart Reflective listening; story listening; Communicating understanding Supporting persons sources of spiritual strength Open-ended questions to illicit feelings and concerns Inquiry about beliefs, values and practices Confession/Reconciliation

    Slide 19:Spirituality is difficult to sustain without community. Facing our mortality is difficult without community. We are relational creatures with a longing for connection. Many people are not afraid to die, but they are afraid of pain or of dying alone

    Spirituality is difficult to sustain without community. Facing our mortality is difficult without community. Some reminders

    Slide 20: Professional growth goals Help make connections and strengthen a sense of belonging; refer to religious professionals and spiritual practitioners Allow yourself to be touched Encourage reminiscence and life review Validate past challenges, present concerns, and thoughts about the future Allow patients to become mentors Affirm patients sense of identity Support functional dependency Create space for spirituality/meaning- making

    Slide 21:Again: End of Life Choices

    Living well How to die treatment choices, acute care or palliative care Where to die When to die? Whom to be with To prepare or not to prepare Farewells (rituals, personal time) Funeral or memorial planning Whose job? Choosing not to choose

    Slide 22:Letting go

    Learning to Fall: The Blessings of an Imperfect Life, Philip Simmons Letting go means being able to mourn losses.

    Slide 23:Have a hand in each pocket and your eye towards the light