The Sense of an Ending: stories, meanings and understanding

1. Bridging between loss and meaning: when meaning is lost Christian Juul Busch, Chaplain,Rigshospitalet, Copenhagenchristian.busch@regionh.dk The Sense of an Ending: stories, meanings and understanding Scottish Partnership for Palliative Care. Annual Conference 28 November 2018

2. “what does it mean to exist?” • Soeren Kierkegaard 1813 – 1855 • Danish philosopher

3. People who faces hard times often are not looking for answers but presence. • Lars Bjørklund (Swedish chaplain)

4. “If one is truly to succeed in leading a person to a specific place, one must first and foremost take care to find him where he is and begin there. This is the secret in the entire art of helping.” Soeren Kierkegaard 1859

5. Weare the storiesthatcanbe told aboutus! Seele-sorge / spiritual care: is to give another person a new understanding in a situation where that person has lost the understanding of his life. Kjeld Holm, Danish bishop

6. Paul Ricoeur (1913-2005) “We are the stories that can be told about us” ”A human life can be understood as the stories that can be told about it. Not that it's the stories, but it can be understood as a story” Paul Ricoeur (1913-2005) Names are headlines over stories Wilhelm Schapp (1884-1965)

7. Paul Ricoeur: «We tell stories because human life ultimately needs and deserves to be told». Ricoeur P. Time and Narrative. Volume 1. Editions du Seuil 1983. Chicago: The University of Chicago Press, 1984. p.75.

8. What does "the story" do? • Storytelling creates meaning. • Meaning is created through the act of speaking. • Meaning is not stored in advance somewhere. • Meaning lies in the ability of the language to put the words together into a story.

9. ”When you tell stories, you heal things that have broke!” ”Jeresponderai!” Karen Blixen (Isac Dinesen) (1885-1962)

10. The broken story – loss of meaning When you get another story than you expected!

11. Cancerpatient: • This was not a part of the plan! • What was the plan?

12. You must be your own life's 'responsible editor’! Kierkegaard

13. We are the stories that can be told about us! • Søren Kierkegaard says: • You must be your own life's 'responsible editor’ • You are not only the narrator of your own life’s story – but you are also ‘being told’

14. How do we talk aboutmeaning? – a demonstration

15. How do we talk about meaning? • Patients don’t say: ”Since the illness got so severe - my sources of meaning are cracking!” • Cancerpatient: • I use to run … • I love seeing how nature change over the year … • My sport … marathon … • …If I can’t at least sit by the river and do flyfishing – I rather be dead!

16. Schnell, Tatjana (2009) The Sources of Meaning and Meaning in Life Questionnaire (SoMe): Relations to demographics and well-being. The Journ. of Positive Psychology, Vol 4, Issue 6, • When asked about their sources of meaning: • “family”, “friends”, “work” etc. • “Sources of meaning are not conscious. • We are not really aware of them but we can reflect upon them.” Tatiana Schnell • http://www.religiousstudiesproject.com/2014/04/10/psychology-of-what-religion-spirituality-or-meaning-in-search-of-a-proper-name-for-the-field-of-psychology-of-religion/

17. How do we talk about meaning? • Talking about existential suffering and meaning is not abstract – it is very concrete! • An “exercise”

18. How do we talk about meaning? • Cancer patient: • ”I’ve had to turn around most of the “notes” …, • But the few “notes” I still have left, I’ve enlarged till A4 – size.”

19. How do we talk about meaning? • Cancer patient: • ”I’ve had to turn around most of the “notes” • Letter: • "…,The sadness is massive about the "notes“ I have had to turn around, ...... but so much more there is reason to be happy about the opportunities that are left.I went home, grabbed the hymnal-book, and started singing the hymns from one end. ... "

20. A human being is a synthesis of the infinite and the finite, of the temporal and the eternal, of freedom and necessity, in short, a synthesis. Soeren Kierkegaard. The Sickness Unto Death. 1849. • Meaning Meaninglessness • The right to know The right not to know • ”In here” ”Out there” • Benefit Loss • Hope Realism / fear • The will to live The wish to die • Revolt Submission • Control Powerlessness • Joy Sorrow • Gratefulness Bitterness

21. Unifying contradictions • It's contradictions, one might think were incompatible, so that the one excludes and paralyzes the other, but in reality strengths and fertilize each other; both contradictions go into decline if they lose contact with each other. • K. E. Løgstrup (Danish philosopher and theologist)

22. Unifying contradictions • Ex. Definition of suffering & happiness • Suffering = Contrastbetweenwhat you want and what you can • Happiness = Charing and receivingbetweenpeople • Suffering doe’s not always exclude happiness. • Peter Kemp (Danish philosopher and theologist)

23. A human being is a synthesis of the infinite and the finite, of the temporal and the eternal, of freedom and necessity, in short, a synthesis. Soeren Kierkegaard. The Sickness Unto Death. 1849. • Meaning Meaninglessness • The right to know The right not to know • ”In here” ”Out there” • Benefit Loss • Hope Realism / fear • The will to live The wish to die • Revolt Submission • Control Powerlessness • Joy Sorrow • Gratefulness Bitterness

24. How do we talk about meaning? • Cancer patient: • ”I’ve had to turn around most of the “notes” …, • Letter: • ”Turning around so many “notes” has been a tuff job …but on the contrary I have so much more reason to be happy about the possibilities that remains. … • “In the beginning of May I celebrated my 60th birthday, I’ve had my doubts if I lived long enough to celebrate my birthday – It was a very happy day … • Illness was present at the table, but joy of life sat at the place of honor. My children and grandchildren were present.”

25. Etichs!

26. ”Benefit” - finding • The ability to find areas of life where the disease / loss has had a positive effect. • Life perception “The sky is more blue, the grass is greener” • Social contexts “Meaning of my loved one” • Personal development “What can I learn from this?”

27. the existential shock How can we hear when patients experience an existential shock? • Søren Kierkegaard tegnet af P.C. Klæstrup ca. 1845. Fra Det Kongelige Bibliotek.

28. the existential shock • “… When you throughout life has been privileged with an iron constitution, always knew the body was in order and did what I ordered it to do, you create a strange sense of power. You feel invulnerable. Yes, you probably don’t think about it, but that is to be quite exposed, quite vulnerable. • And when suddenly the black wing whiz over one's body and soul, you see that the perfect is no longer perfect, the invulnerable can be hurt.” • … Ghita Nørby, skuespiller, født 1935 – fik konstateret underlivskræft i 1993. Madsen, B og Olesen, P 2003 Vi længe leve. 25 danskere skriver om at overleve kræft. Kroghs Forlag, s.16.

29. Basic existential themes Basic trust in life Existential isolation Invulnerability Meaninglessness Freedom / choice / guilt Death Forgotten/denied in everyday life Irvin D. Yalom: Eksistentiel psykoterapi. Hans Reitzels Forlag 1998.

30. The existential chock – loss and meaning What is the reaction to loss of invulnerability? Anxiety! (Existential anxiety)

31. Basic existential themes Basic trust in life Existential isolation Invulnerability Meaninglessness Freedom/ choice / guilt Vulnerable Death Forgotten/denied in everyday life ANXIETY Irvin D. Yalom: Eksistentiel psykoterapi. Hans Reitzels Forlag 1998.

32. ”Always” & ”Never”

33. "‘ … what it is to be in anxiety… This is an adventure that every human being must go through — to learn to be anxious in order that he may not perish either by never having been in anxiety or by succumbing in anxiety. Whoever has learned to be anxious in the right way has learned the ultimate.’ Kierkegaard 1844 book The Concept of Anxiety How can we help palliative patients “to be anxious in the right way”?

34. Angst – en definition. • What is anxiety? • Definition: • Anxiety is the mentally healthy human response to losing control! • Chr. Busch

35. Angst – en definition. • What is anxiety? • Definition: • Anxiety is a state where a being becomes aware of its possible non-being. • Paul Tillich. Mod til livet. Anis 1995.

36. Heidegger (1889-1976) • If you ask a person who has just had a great attack of anxiety, “what was it really you were afraid of?” • That person will often answer – “there was actually nothing!” • Everyday-language reveals what is the ground of anxiety – nothing!

37. Göran Palm. Why do nights have no names? • As long as the sun is shining on us or on the clouds, it’s Sunday, Monday, Tuesday Wednesday,Thursday, Friday or Saturday. • But the nights are called nothing. • The nights are not blessed. • They refuse to be baptized • Danish: • Så længe solen skinner på os eller på skyerne, er det søndag, mandag, tirsdag onsdag, torsdag, fredag eller lørdag. • Men nætterne hedder ingenting. • Nætterne er ikke velsignede. • De nægter at lade sig døbe.

38. Basic existential themes Basic trust in life Existential isolation Invulnerability Meaninglessness Freedom/ choice / guilt Vulnerable Death Forgotten/denied in everyday life ANXIETY Irvin D. Yalom: Eksistentiel psykoterapi. Hans Reitzels Forlag 1998.

39. anxiety and fear. • What is anxiety in comparison to fear? • Fear has an object. • The object of anxiety is the negation of any object - the "non-being". • Anxiety and fear can be distinguished from one another, but must not be separated. • The painful part of fear is anxiety. • Anxiety strives to become fear. • Paul Tillich. Mod til livet. Anis 1995. • at redigere Paul Tillich. Mod til livet. Anis 1995.

40. De 3 Most important take-home messages • Meaning is concrete and specifik • Anxiety is the mentally healthy person's response to losing control (my definition) • The first help you can give your patients with anxiety is to "name" the anxiety. • Help your patients with "lifelines“ - strategies when the anxiety is the worst!