Bereavement, Loss and Grief, Survival strategies for primary care

1. Bereavement, Loss and Grief,Survival strategies for primary care Dr Peter Nightingale Macmillan GP GP Rosebank Surgery Clinical Assistant St John’s Hospice

2. Objectives By the end of this presentation I hope to have enabled you to consider aspects of the current debate about the process of loss and grief. I also hope to consider how best to help yourselves and also bereaved people.

3. Systematic Review Prospective RCT CERTAINTY Organised observation Pattern recognition IGNORANCE Anecdote/chance recognition Based on Dudley 1983

4. Limitations of Empirical Studies • Dominance of Widows (young, white and middle class) • Age cohort effect. The social norms of the 1970’s may no longer apply • Ethnicity • High refusal rates • Lack of control groups • Lack of reliable measures of grief • Self reporting

5. Health Warning I have tried to be objective in this presentation, but inevitably strong emotions may arise in any of us due to the nature of the subject being discussed. (It actually happened to me in producing this presentation) Please feel free to leave or stop me if required.

6. Overview • Definitions • Bereavement Theory • Health Professional Perspective

7. Definitions • Loss When you no longer have something because you don’t know where it is, or it has been taken away from you. • Grief Emotional and psychological reaction to loss • Bereavement Reaction to the loss of a loved person by death

8. The Gold Standard Framework • Communication Ca register/MDT meetings. • Co-ordination Key person • Control of Symptoms Assessment, treatment and patient centred care. • Continuity Handover to out-of-hours/protocol. Information to pts/carers. • Continued Learning Practice-based learning/reflection on experiences. • Carer Support Practical, emotional, bereavement. • Care of the Dying Liverpool Integrated care pathway(48 hours of life).

9. Models of Adaptation to loss • Traditional Models Based on the work of Bowlby, Parkes, Kubler-Ross and Worden. All can be referred to as ‘PHASE MODELS’. • New models of Grief • The multidimensional model • Dual process model • Biographical models

10. Phase Models • The number and duration of these phases varies but are remarkably similar and can be summarised as:- • Numbness • Yearning • Despair • Recovery

11. 1) Numbness • Disbelief and unreality-feelings of functioning on ‘Automatic Pilot’ • Can occur even if death expected • Unreality interspersed by bouts of anger and despair • Somatic symptoms common

12. 2) Yearning • Numbness replaced by ‘pangs of grief’ • Pining interspersed with anxiety, tension anger and self-reproach • Restless searching, auditory and sensory awareness of deceased • Crying common-deep sighing respirations • Sleep disturbance and loss of appetite common

13. 3) Despair • Permanence of loss recognised • Pangs replaced with despair and apathy • Social withdrawal common • Poor concentration and inability to see anything worthwhile in the future common

14. 4) Recovery • With great effort identity rebuilt • New skills acquired • Purpose for living re-established • Some positive feelings return • Energy levels return • BUT-pangs of grief at anniversaries, hearing a special song etc can persist for years

15. Bereavement Models (Linear) Loss Shock Yearning Disorder and despair Adaptation

16. Bowlby • Firmly believed that working through the phases of grief was a necessary aspect of successful mourning. • He hypothesised three disordered forms of attachment in Childhood that could lead to vulnerability following bereavement:- • Anxious attachment • Compulsive self-reliance • Compulsive caregiving

18. Attachment Theory (John Bowlby) ♦ All Social Animals become attached to each other. ♦ The main function of attachment is to provide security ♦ The function of crying and searching following separation is to promote reunion ♦ The nuclear source of security is the Family

20. Separations from Parents in Childhood predict Insecurity and other Problems Later (Bowlby)

21. Secure Attachment ♦ ‘Mother’ Sensitively Responsive and Protective only when necessary. ♦ Child in ‘Strange Situation’ Some anxiety but easily reassured when mother returns ♦ Later Develops autonomy with trust in self and others.

22. SECURE PARENTING •Overall Parenting Good 􀃔 1)Childhood Vulnerability Low 􀃔 2)Harmony in Adult Attachments 􀃔 3)Overall Coping Good 􀃔

23. Disorganised/Disoriented Attachment • •Family Rejection/Violence, Danger&/or Depression increases the risk that the child will be unhappy. • Adult then lacks trust in self & others, may harm self. • Bereavement reaction associated with Anxiety/Panic

24. Kubler-Ross (1969) • Described a five stage model of the grief of terminally ill people derived from her clinical work as a psychiatrist • It has often been applied to grief following bereavement • Denial and isolation • Anger • Bargaining • Depression • Acceptance

25. Kubler - Ross • Not everyone will progress through all five stages • They may not be in the same order • Denial and acceptance can be hard to differentiate • Danger of dying patients fears and concerns being dismissed as ‘just a stage they are passing through’ • Simplistic and risks false assumptions being made and lack of exploration of concerns by caregivers

26. Anticipatory Grief • Anticipatory Grief is a progression through the stages of grief prior to the loss • Involves all losses from diagnosis to death

27. Key Points of Loss • Pre-diagnosis • Diagnosis • Treatment • Failure of Treatment • Metastatic Disease • Disease Recurrence • End of active interventions

28. Control Self-esteem Self-image Role Work Independence Stigma Abandonment Isolation Of Future Threat of Death Reduced ability Confidence in professionals/ drugs/ treatments Loss of support Chronic Illness and Loss

29. Worden • Refined the phases of grief • Drew on Freud’s concept of grief work • Drew on Engel’s theory of grief as an illness-i.e. the psychological trauma is analogous to the physiological trauma of severe injury • Conceptualised as four overlapping tasks

30. Worden’s Tasks of Mourning. Rather than seeing that there are ‘stages’ of grief that people need to pass through (which can be a little rigid) it is perhaps more helpful to consider the tasks that the bereaved need to accomplish before they can move on.

31. Worden’s Tasks of MourningTasks that the bereaved need to accomplish • To accept the reality of the loss • To experience the emotional pain • To adjust to an environment in which the deceased is missing • To relocate the dead person within one’s life and find ways to remember the dead person

32. Problems with Phase Models • They tend to be interpreted as linear • If used prescriptively hasty judgements about ‘normality’ can occur • Research (Shuchter and Zisbrook) has suggested grief is individualised and variable. • Kubler-Ross’ stage theory was not developed for bereavement and has been misinterpreted

33. ‘Grief Work’ • This is the cognitive process of confronting loss, of going over events before and after death, focussing on memories and working towards detachment from the deceased. • It has been suggested that this has become ‘clinical lore’, and this work is a necessary part of normal grieving

34. Difficulties with Grief Work(Wortman and Silver) • Distress and Depression are inevitable Distress varies, and initial high distress groups can follow a chronic grief pattern. Depression is not inevitable • The expectation of Recovery For a minority of individuals grief may be prolonged- few studies last longer than 2 years. Klass discusses ‘continuing bonds’

35. New Models of Grief • The multidimensional model • The Dual Process Model (DPM) • Biographical Models

36. The Multidimentional model • Le Poidevin working with Parkes at St Christopher’s Hospice developed this model • Grief conceptualised as a process of change along seven dimensions. • Importantly this model focuses on what resources a person may have to help them cope

37. Dimensions of LossSusan le Poidevin • Identity How has the loss affected self-esteem? • Emotionally Are they at ease with expressing feelings? • Spiritual What meaning has been ascribed to the loss? • Practical How are everyday practicalities managed? • Physical What is the impact on physical health? • Lifestyle Has the loss caused financial problems? • Family/community What support is available?

38. Dual Process Model • The key concept is oscillation between coping behaviours • Grief Work included in Loss Orientation • Time needs to be taken off from strong emotions to avoid being overwhelmed • Both expressing and controlling feelings important in this model • This model remains to be tested but has been shown to be a useful addition

39. Bereavement Models (Continual) Grief Work Intrusion of Grief Breaking bonds/ ties Denial/ avoidance of changes Attending to life changes Doing new things Distraction from grief New roles / relationships EVERYDAY LIFE EXPERIENCE Loss Orientated Restoration Orientated

41. Biographical Models • Convincing empirical research supports the importance of a relationship with the deceased. • May be best achieved by speaking to others who knew the deceased, constructing a biography. • This may help integration of this relationship into ongoing lives (Walter 1996)

43. The Whirlpool of LossDr Richard Wilson

44. Disbelief Anger Anxiety Guilt Sadness Pining Despair Crying Fear Unrealistic Hope Emotions of Bereavement

45. Care for the Bereaved • Respect • Dignity • Empathy • Allow disclosure of concerns • Allow expression of grief • Allow bereaved to look back over the death • Primary Care Support • Self-Help • Voluntary Organisations • Counselling

47. 10 Ways to Help Bereaved People • Be There-don’t offer solutions • Listen in an accepting and non-judgemental way • Show that you are listening and you recognise something of what they are going through • Encourage them to talk about the deceased • Tolerate silences

48. 10 ways to help (cont) • Be familiar with your own feelings about loss and grief • Offer reassurance about the normality of grief reactions • Do not take anger personally • Recognise that your own feelings may reflect how they feel • Accept that you cannot make them feel better (but you are still doing something useful)

49. Bereavement Care • Relf studied bereavement services in Oxford in 1997 and found a marked reduction in the use of GP services in those supported.What helped was:- • Being listened to • Feeling understood • Talking to someone outside their social network • Information about Grief 75% found support helpful, but 25% were unsatisfied

50. Health Professionals Perspective