1. 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

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

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

4. 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?

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

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

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

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

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

10. 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?

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

12. 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?

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

14. *** 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?

15. 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?

16. 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.

17. 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
Halifax, J. (2012). A heuristic model of enactive compassion. Current Opinion in Supportive and Palliative Care, 6(2),

18. 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  

19. Q & A

20. 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  

21. 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.)   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), e

22. 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),   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  

23.   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 (note: Their opening page looks light, but when you click on their articles, they’re all evidence-based and user-friendly.)   Gratitude Challenge

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

25. GRACE training https://www. upaya
  GRACE training   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),