THE ART AND THE SCIENCE Of caring for COMPlicated Grief

1. THE ART AND THE SCIENCE Of caring for COMPlicated Grief AProf Judith Murray The University of QLD 3 August 2012

2. “Give sorrow words; the grief that does not speak knits up the o-er wrought heart and bids it break.”   William Shakespeare,  Macbeth “They say time heals all wounds, but that presumes the source of the grief is finite” Cassandra Clare, Clockwork Prince

3. Theme OF LOSS The experience of loss is integrated into the basic psychological functioning of a person, even from the earliest experiences. Therefore there exists both the potential for personal growth and personal deterioration.

4. When Deterioration is More Apparent than Healing A number of difficulties arise when we attempt to discuss ‘problem’/complicated grieving : • There is not a clear definition of grieving that has ‘gone wrong’, ‘problem’ grieving; • There is not a clear consensus as to the prevalence of grieving/mourning difficulties • A wide variety of symptoms can constitute grieving that has gone wrong • The distinction between normal grieving and grieving that has gone wrong is not clear.

5. Distinction with Normal Grieving is not Clear • While many of the reactions constituting ‘normal’ grief also characterize ‘problem’ grieving, it is the intensity of, the mixture of, and the disablement produced by, these reactions that distinguishes ‘problem’ grief from the natural reactions to loss. • Probably the most telling aspect of ‘problem’ grieving is its interference with everyday activities. As Horacek puts it: …although many grief reactions will fade and some will disappear, and most grief tasks, such as dealing with anger, guilt, and idealization, can be completed, the basic loss continues like a reaction to an amputation or dismemberment. Unlike unresolved or chronic grief, this continuing grieving does not significantly impair everyday functioning. • Rather than there being a distinct boundary separating the two, it is more likely that there exists a continuum ranging from normal grief that causes little disruption to life, to the very severe forms of disturbance that are apparent to the general public.

6. So let’s formally look at complicated grief...

7. Complicated Grief Complicated grief occurs when integration of the death does not occur. People who suffer from complicated grief experience a sense of persistent and disturbing disbelief regarding the death and resistance to accepting the painful reality. Intense yearning and longing for the deceased continues, along with frequent pangs of intense, painful emotions. Thoughts of the loved one remain preoccupying often including distressing intrusive thoughts related to the death, and there is avoidance of a range of situations and activities that serve as a reminder of the painful loss. Interest and engagement in ongoing life is limited or absent (Complicated Grief Review, Edith Cowan Uni and Australian Government).

8. Proposed DSMV Revision under Adjustment Disorder (March 2011) Bereavement Related Disorder http://www.dsm5.org/proposedrevision/pages/proposedrevision.aspx?rid=367 A. The person experienced the death of a close relative or friend at least 12 months earlier. B. Since the death at least 1 of the following symptoms is experienced on more days than not and to a clinically significant degree: 1. Persistent yearning/longing for the deceased 2. Intense sorrow and emotional pain because of the death 3. Preoccupation with the deceased person 4. Preoccupation with the circumstances of the death

9. Proposed DSMV Revision under Adjustment Disorder (March 2011) Bereavement Related Disorder C. Since the death at least 6 of the following symptoms are experienced on more days than not and to a clinically significant degree: Reactive Distress to the Death 1. Marked difficulty accepting the death 2. Feeling shocked, stunned or emotionally numb over the loss 3. Difficulty in positive reminiscing about the deceased 4. Bitterness or anger related to the loss 5. Maladaptive appraisals about oneself in relation to the deceased or the death (e.g., self-blame) 6. Excessive avoidance of reminders of the loss (e.g., avoiding places or people associated with the deceased)

10. Proposed DSMV Revision under Adjustment Disorder (March 2011) Bereavement Related Disorder C. Since the death at least 6 of the following symptoms are experienced on more days than not and to a clinically significant degree: (CONT.) Social/Identity Disruption 7. A desire not to live in order to be with the deceased 8. Difficulty trusting other people since the death 9. Feeling alone or detached from other people since the death 10. Feeling that life is meaningless or empty without the deceased, or the belief that one cannot function without the deceased 11. Confusion about one’s role in life or a diminished sense of one’s identity (e.g., feeling that a part of oneself died with the deceased) 12. Difficulty or reluctance to pursue interests since the loss or to plan for the future (e.g., friendships, activities)

11. Proposed DSMV Revision under Adjustment Disorder (March 2011) Bereavement Related Disorder C. The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning D. Mourning shows substantial cultural variation; the bereavement reaction must be out of proportion or inconsistent with cultural or religious norms Specify if With Traumatic Bereavement:  Following a death that occurred under traumatic circumstances (e.g. homicide, suicide, disaster or accident), there are persistent, frequent distressing thoughts, images or feelings related to traumatic features of the death (e.g., the deceased’s degree of suffering, gruesome injury, blame of self or others for the death), including in response to reminders of the loss.

12. But WHY Does it Happen? • Different theories of grieving suggest different causes • Unless we know the cause we may offer ineffective care • Each theory should provide hypotheses that we may investigate for this particular person. In other words, there is not a ‘one size fits all’ answer to complicated grief

13. What do different theories suggest about complicated grief? • Psychodynamics: The role of ambivalence • Attachment Theory: Insecure attachments in life • Social Construction: Disenfranchiosement, Problematic cultural and familial patterns • Constructivist Psychology: Inability to achieve meaning-based integration of the loss into autobiographical narrative • Cognitive Behavioral

14. Cognitive-Behavioral Approach Three processes seen as crucial in the development of Complicated Grief: • Insufficient integration of loss into autobiographical knowledge base so event remains very distinct, consequential and emotional and can be triggered easily with persisting attachment reactions • Negative global beliefs and misconceptions of grief reactions • Anxious and depressive avoidance strategies (Boelen et al., 2006)

15. Comorbidities with complicated Grief • Grief and depression • Grief and anxiety • Grief and PTSD and DID • Traumatic Grief • Grief and Substance Abuse • Grief and Suicide : Immediate and ‘Slow’ Suicide

16. But now.....let’s talk about what it may be like to ‘live’ complicated grief...The experience of complicated grief

17. The Experience Experience is not an unstable irrational and emotive concept but rather it is the world, it is knowing Lumby (1994)

18. Experience is what it is to think, to feel, to sense, to interact with, to hold within ourselves the moments of our lives….all at the same moment. • A ‘fact’ is not an experience until it is moulded and then becomes ‘fact’ to that person. • The ‘experience of grief’. Holding the best and the worst in the same moment.....

19. Accessing the Experience of complicated grief Both an ART and a SCIENCE working together hand-in hand

20. Part of the science...listening to stories in research Example: Five themes in Bereavement Grief • Coping: Having faith you can deal with it will get you through it • Affect: We miss him desperately • Change: The drive I had for life is totally changed • Details: Could tell you exactly what I was doing the night he died • Relationship: He would walk in the room and... Ref: Muller, E.D., & Thompson, C.L. (2003). The experience of grief after bereavement. Journal of Mental Health Counseling, 25(3), 183-203.

21. The lived experience of complicated grief is lived in our own heads amongst the comfort there or trapped by the solitude from others there

22. Basic Principles about the brain “Neurones that fire together wire together”. Basis of Neural Plasticity. Some events are so powerful that the firing can be almost instantaneous and strong rather than learned over a prolonged period Neurones and humans are social entities, cannot exist in isolation, and can only be understood in the context of the relationships with others Brain an organ of adaptation with 70% of structure being added after birth Vast majority of brain’s processing occurs below level of consciousness Brain very integrated. Don’t misunderstand when discussions occur around parts. It is not compartmentalized just efficient.

23. PARTS OF THE BRAINhemispheresSections

24. Basic Principles Left hemisphere as seat of conscious awareness (secondary process), social interactions, and functions best during moderate levels of arousal Right hemisphere as centre of unconscious processing (primary process), internal experience, and processes high and low levels of arousal

25. Right Hemisphere • Sees the whole picture.The gist • Reads emotional expressions and body language • Emotional content of speech • Picks up rhythm, meter and cadence in speech • Responds to novelty, new learning • Context sensitive • Expresses in LHS of face

26. Left Hemisphere • Processes positive emotion • Problem solving • Detail oriented • Routinized skills • Interprets experience • Linear processing. Sequential • Not good at reading facial expressions • Expresses in RHS of face • Can make up and be convinved of ‘facts’ to tell the story

27. Basics Four parts of the brain

28. Specifically the brain and bereavement......

29. Neurobiology and Complicated Grief Neuroimaging (O’Connor, 2005) has found a number of areas of the brain specifically active when grieving people (compared to viewing neutral similar forms of stimuli) are presented with picture and word stimuli of lost loved one or bereavement. Most active ones were: Posterior Cingulate Cortex: Area activated during autobiographical memory so memories being recalled. Also deals with emotionally salient stimuli Anterior Cingulate Cortex and Insula: ACC role in attention and Insula in processing visceromotor information. Suggests strong somatic element in reaction eg., ‘broken heart’, ‘pangs of grief’

30. Neurobiology and Complicated Grief O’Connor et al.(2007)imaged the brains of 12 women diagnosed by Prigerson Complicated Grief Scale as suffering complicated with 12 women not showing complicated grief. Found difference in nucleus accumbens, that is the part that anticipates rewards ie., the part that knows you want something, so the longing becomes like a ppowerful craving. Much more research needed.

31. The Nucleus Accumbens(Rossouw, 2012) • The role of the nucleus accumbens is to determine whether a response is important enough to repeat • Receives signals from the amygdala, hippocampus and medial pre frontal cortex • Researchers refer to the nucleus accumbens as the brain’s sensory-motor interface where the location of the interaction between external stimuli and the physical response is coordinated (Lambert, Kinsley 2011). The implication is that the nucleus accumbens plays a crucial role in initiating and maintaining motivation toward specific stimuli. • As soon as certain variables are associated with the experience of reward, the nucleus accumbens saves it to the brain’s long term memory stores which ensures repetition of the same action. • As soon a strong rewards pattern takes hold in the nucleus ac-cumbens, an adaptive learning system kicks in that is strongly influenced by the activity in the nucleus accumbens.

32. More specifically, Areas of the brain involved in sadness (Freed and Mann, 2007) • Anterior Cingulate Cortex: Involved in cognitive and emotional conflict, perception of pain, and social isolation • Posterior Cingulate Cortex: Emotional memories • Ventrolateral Prefrontal Cortex: Reward processing • Lateral and Dorsolateral Prefrontal Cortex: Involved in executive attention • Superior and Middle Temporal Gyri and Insula: Subjective emotional experience, bodily sensations and emotional decision making • Areas of Basal Ganglia and Cerebellum: Social display of emotion

33. The role of sadness (Freed and Mann, 2007) “To weep is to make less the depth of grief.” William Shakespeare • Incentive salience of the cues left behind by the deceased persist. Reminders automatically bias attention toward and trigger subjective yearning • Reduction of incentive salience is major task of separation. To accept the loss, its incentive salience must be reduced

34. The role of sadness (Freed and Mann, 2007) • Question of if sadness part of the protest or despair phase of bereavement • If sadness episodes part of protest (Reunion Model), it increases incentive salience and increases yearning and searching. Hence adaptive if reunion possible. Maladaptive in bereavement. If this the case, may be best not to encourage periods of sadness and reminiscence • If sadness episodes part of despair (Detachment Model), Sadness decreased incentive salience and decreases yearning and attachment, facilitating detachment. But not the same as forgetting. May make memories more able to be encountered without overwhelming sense of loss or need. May be beneficial to encourage periods of sadness with the bereaved.

35. The Brain and Memories particularly traumatic ones Ordinary memories • Stored in limbic system as episodic memories (memories of personal experiences and events • Cognitive aspects in the hippocampus and emotional in amygdala • Over times aspects processed and transferred to neocortex particularly in pre-frontal cortex for long-term storage giving semantic (factual) memories. Also more tied to language here.

36. How may the brain help us understand the experience of complicated grief?

37. Part of the science...listening to stories in research Five themes in Bereavement Grief: • Coping: Having faith you can deal with it will get you through it. Use of prefrontal cortex; Executive functioning • Affect: We miss him desperately. Nucleus accumbens involvement • Change: The drive I had for life is totally changed. Autobiographical memory. RH involvement. • Details: Could tell you exactly what I was doing the night he died. Limbic involvement in intense memories and sensory information processing • Relationship: He would walk in the room and...limbic attachment patterns. Ref: Muller, E.D., & Thompson, C.L. (2003). The experience of grief after bereavement. Journal of Mental Health Counseling, 25(3), 183-203.

38. So what can the brain teach us about the art of caring for people dealing with complicated grief?

39. What may be important for us from the brain • The brain under stress goes back to basics and reacts more automatically • Fight, flight or freeze • Body-mind connection • Emotions, words and logic may not all be easily linked • Eliciting , and sitting with, sadness may not just be a good counselling technique in bereavement but an imperative • People need to feel safe to be able to use the whole brain in the best ways • Our brains communicate in many ways besides using words....and that can make is very confusing in caring for people • You can’t fake it. Your body and mind won’t let you

40. Communication SENDER RECEIVER RECEIVER SENDER

41. SO IT IS NOT JUST THAT SIMPLE! • The existing state of play in the person and health professional BEFORE the discussion is even begun • Deciding what needs to be done. What are we trying to achieve in this discussion? Are we sure? • Deciding where and when and who • Encoding the message • Importance of communication skills • Language • Identifying what’s needed • Receiving the message successfully • Integrating the message into the existing state • Perceiving and reacting to the received message • Encoding a response • Decoding the response into the existing state of the health professional • Clarifying Understanding

42. Communication: The bereaved • The all-brain encompassing nature of bereavement • The power of the brain being rewarded by memories • Living with fear. The survival default brain • The sense of ‘unreality’ • Trying to find control in a low control –no control situation • Not a clean slate. Bring with them a life history of past events and relationships that will filter their perceptions of the vent and you

43. Communication: The carer • Hearing what they are really saying versus what we think they are saying. Skills of slowing down and reflecting before we jump in too fast • Knowing they may not be able to use speech so easily under stress and we need to use time and our speech, our timing and silence etc. to allow those pathways to speech to open up • How do we open up and sit with sadness and monitor if it is adaptive of not? • Remember their mind and their family is their turf, their ‘foreign country’. Asking for directions and using time to get to know that place always helps.

44. Communication: The carer • What is my role with these people? • What messages do I want them to take from this experience? Know them and make sure they permeate every encounter.

45. Communication: The Relationship • Interpersonal Neurobiology • It matters beyond words. It develops with more than words • You are an important part of building a good one: PRESESENCE : Key = To be open ATTUNEMENT Key = ‘I don’t know’ and ‘Tell me more” RESONANCE TRUST TRUTH (Siegel, 2010)

46. Limbic Reasonance A symphony of mutual exchange and internal adaptation whereby two mammals become attuned to each other’s inner states. It is limbic reasonance that makes looking into the face of another emotionally responsive creature a multi-layered experience. Instead of seeing a pair of eyes as two bespeckled buttons, when we look into the occular portals to a limbic brain our vision goes deep: the sensations multiply….When we meet the gaze of another, two nervous systems achieve a palpable and intimate apposition (Lewis, Amini and Lannon, 2000, p. 63) Power of the eyes. It is one reason that we find non-responsive eyes disconcerting eg., blindness, mental illness, even personality disorders

47. Returning to experience But whatever experience we have, whether it is good or whether it's bad, we can always remember it and learn something from it. And it's those moments... when something touches you, something opens up something that you didn't realize before, you feel a longing, you know, that you never felt before.  Makoto Fujimura

48. May I live this Day… Compassionate of heart Gentle in word Gracious in awareness Courageous in thought Generous in Love John O’Donohue (2000)