Judy Long, Palliative Care Chaplain Judith.long@ucsf.edu 5-20-19 Sustainable Caregiving -finding balance in the presence of serious illness Judy Long, Palliative Care Chaplain Judith.long@ucsf.edu 5-20-19

Who are the caregivers in the world of serious illness? What would really serve?

Types of Caregivers  Patients  Clinicians  Friends/family What would really serve?

Let’s talk about: Distress and resilience Core teaching/counseling points Halifax GRACE model Current threads / paths to further research Q & A What would really serve?

Caregiver Distress in Serious Illness Common elements: Meaninglessness Isolation Helplessness What would really serve?

= = Spiritual Distress in Serious Illness Common elements: Meaninglessness Isolation Helplessness What would really serve?

What if we turn them around? Meaninglessness  Meaning, Purpose Pro-Social Intention Isolation  Connection Helplessness  Choice What would really serve?

Caregiver / Spiritual Resilience Strengthen overlapping areas of: Meaning, Purpose , Pro-Social Intention Connection and/or Choice What would really serve?

Assessment/Intervention ‘Getting to know you’ and Scanning for: meaning connection sense of choice What would really serve?

Related Plan of Care Pastoral Counseling and Psycho-Education  one-on-one  with family or friends  in a class Either way…  Live  in person  Live-Online  by computer What would really serve?

Content Case-dependent In general: directed attention purpose/intention choice What would really serve?

Why I usually begin with directed attention  Embodied introduction to mindfulness  Establishes safety first  Gives them an immediate choice they can act on (self-efficacy) What would really serve?

Pro-Social Intention Recalling big Intention Setting daily intention Creating specific intentions What would really serve?

*** Connection *** Relationships  Emotions Repertoire of stress responses Emotions 101 Meeting difficult emotions Mindful self-compassion + burden dynamic, forgiveness practice pre-death grief and chronic sorrow What would really serve?

Choice Halifax GRACE intervention for balance RENEW intervention to reframe helplessness Growth in adversity and balanced listening Gratitude practice What works for me What would really serve?

G.R.A.C.E. INTERVENTION Provides those working in stressful situations a way to open to the experience of another, and to stay balanced in the presence of suffering.  

G.R.A.C.E. INTERVENTION Gather your attention: attentional balance, grounding Recall your (pro-social) intention Attune to self and then other: affective resonance Consider what will really serve Engage (ethical enactment), then end https://www.upaya.org/social-action/grace/ Halifax, J. (2012). A heuristic model of enactive compassion. Current Opinion in Supportive and Palliative Care, 6(2), 228-235.

Topics for further research Live-Online classes for family caregivers, patients, interdisciplinary clinicians and scaling the availability New therapies to promote safety and the attenuation of anticipation  

Q & A

SELECTED RESOURCES  In an Unspoken Voice: how the body releases trauma and restored goodness, by Peter Levine   Pocket Guide to The Polyvagal Theory: the transformative power of feeling safe, by Stephen W. Porges “Just Breathe” kindergartners talk about mindfulness meditation 4 mins mindful magazine https://www.youtube.com/watch?v=RVA2N6tX2cg  

Greater Purpose Youtube clip of Stephen Cole at Telluride conference on the science of compassion, about the biology of purpose (how prosocial purpose is biologically beneficial) (I really enjoyed this one.) https://www.youtube.com/watch?v=ZCqYMdYa5DY   Article by Barbara Fredrickson, et al, on same topic Fredrickson, B. L., Grewen, K. M., Algoe, S. B., Firestine, A. M., Arevalo, J. M., Ma, J., & Cole, S. W. (2015). Psychological well-being and the human conserved transcriptional response to adversity. PloS one, 10(3), e0121839.

Dignity Therapy, developed by Harvey Max Chochinov and his palliative care team in Manitoba (there’s also a book) Chochinov, H. M., Kristjanson, L. J., Breitbart, W., McClement, S., Hack, T. F., Hassard, T., & Harlos, M. (2011). Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial. The lancet oncology, 12(8), 753-762.   Book about how pro-social purpose helps adolescents to thrive The Path to Purpose: how young people find their calling in life, by William Damon    

  Book about building compassion A Fearless Heart: how the courage to be compassionate can transform our lives, by Thupten Jinpa   CONNECTION Greater Good Science Center https://greatergood.berkeley.edu/ (note: Their opening page looks light, but when you click on their articles, they’re all evidence-based and user-friendly.)   Gratitude Challenge www.thnx4.org  

Center for Mindful Self-Compassion (MSC) https://centerformsc   Center for Mindful Self-Compassion (MSC) https://centerformsc.org/ (included guided practices)   Choice Vital Talk -- http://vitaltalk.org/ palliative care communications; also available as app   Upaya Institute and Zen Center https://www.upaya.org/      

GRACE training https://www. upaya   GRACE training https://www.upaya.org/program/g-r-c-e-training-cultivating-compassion-based-interactions-2019/?id=2150   RENEW protocol Back, A. L., Rushton, C. H., Kaszniak, A. W., & Halifax, J. S. (2015). “Why are we doing this?”: Clinician helplessness in the face of suffering. Journal of palliative medicine, 18(1), 26-30.