1. Answering Difficult Questions… …Some thoughts Ciara Savage, Palliative Care Social Worker. 18 th September, 2014

2. Why is it so hard…? … personal feelings …helplessness …fears we hold …awkwardness …the environment …bearing witness to pain

3. Palliative Care and End of Life Care… “…touches, pervades and provokes primeval fears and feelings.” (McSherry, 2013)

4. Our Fears… What energises them? WISE FEAR ~ it is scary LEARNING ‘how to notice’ (in our patients and ourselves) unknown uncertainty

5. DIGNITY Actioning Dignity… … otherwise it remains rhetorical (Magee et al, 2008)

6. Dignity PHYSICAL SPIRITUAL PSYCHOLOGICAL SOCIAL CULTURE ENVIRONMENT

7. Dignity of Personal Identity Integrity, Autonomy, Inclusion… … shapes and preserves us. Our actions, attitudes and behaviours can either preserve or compromise our patients Dignity.

8. DIGNITY Disease, illness can strip Dignity away, Leaving patients vulnerable & exposed. Our Role; to safeguard and preserve Dignity

9. ABCD of Dignity Conserving Care (Cochinov,2002) A ttitudes B ehaviours C ompassion D ialogue

10. EMPATHY ‘Einfuhlung’ (Lipps, 1880’s) ‘…consideration of another persons feelings and readiness to respond to his/her needs… without making his/her burden one’s own’ (Szalita, 1976) ‘a balanced curiosity leading to a deeper understanding of another human being (Bellet & Maloney, 1991)

11. EMPATHY Recognising presence of strong feeling Pausing to reflect on this Stating your perceptions on what has been described Legitimising these feelings Respecting effort to cope with difficulty Offer of support

12. Emotional Attunement The point of Empathy… … to focus attention on the patient (not on introspection) Need not be awkward or exhausting

13. Skillful Attunement; … reading non-verbal cues, tone of voice, body language. … use in ordinary clinical and non- clinical interactions

14. When the question is asked… … our patients take a chance on us. How we respond is critical. Ground our response; honouring the patient’s personal dignity, using skills of empathy and emotional attunement.

15. Simple Ideas Take a breath – don’t rush it Avoid the temptation to placate Really listen – what is actually being asked? why is it happening now? why is it happening now? why am I being asked? why am I being asked?

16. Communicating in stressful circumstances HOW? Use natural strengths; but have awareness of limitations KNOWLEDGE (translate) (translate) STYLE – using repetoire, skills GRACE – feel, generosity of spirit

17. Using Questions Effectively Broad, Open: Encourages story/ narrative (How, what, Tell me…) Open Directive: Targeting specific issue/point (How did you feel when you heard that?) (How did you feel when you heard that?) Directive: Important when seeking factual information. (Where is the pain?) Closed: When you need a YES/NO ‘Are you sleeping?

18. Pitfalls to Avoid… Leading Questions: Can assume an answer, or restrict expression. (I expect you were worried) Multiple Questions: Without pause for response Premature/False reassurance: Need to explore fully Normalising: Be careful in use

19. Responding to Anger Speak to FEAR & not to ANGER (Cancer Tales, 2002)

20. Diffusing Anger oAcknowledge oInvite explanation of cause oLISTEN to story oFocus on THEIR stress/feelings oApologise if appropriate oClarify if appropriate oNegotiate a solution

21. Family Focus Helping families understand End of Life Symptoms. Specific Information Reduces Anxiety and potential misunderstanding

22. becoming a, becoming a, ‘Fellow Traveller’ (Holloway, 2010)

23. References McSherry, Wilf, Dignity in end of life care,in Spirituality and End of Life Care, Gilbert, P (ed.)2014 Pavillion Cancer Tales, (2002) also online learning resource www.cancertales.org www.cancertales.org http://realbalance.com/the-role-of-empathy-in- healthcare/Print http://realbalance.com/the-role-of-empathy-in- healthcare/Print Charon, Rita Narrative Medicine: AModel for Empathy, Reflection, Profession, and Trust, JAMA, 2001;286(15):1897-1902 Moss, Bernard, The Caring Professions (Ths Social Worker)in Spirituality and End of Life Care, Gilbert, P (ed.)2014 Pavillion