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

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Presentation on theme: "Bereavement, Loss and Grief, Survival strategies for primary care Dr Peter Nightingale Macmillan GP GP Rosebank Surgery Clinical Assistant St John ’ s."— Presentation transcript:

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

3 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.

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

5 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

6 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.

7 Overview Definitions Bereavement Theory Health Professional Perspective

8 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

9 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).

10 Models of Adaptation to loss 1. Traditional Models Based on the work of Bowlby, Parkes, Kubler-Ross and Worden. All can be referred to as ‘ PHASE MODELS ’. 2. New models of Grief The multidimensional model Dual process model Biographical models

11 Phase Models The number and duration of these phases varies but are remarkably similar and can be summarised as:- 1. Numbness 2. Yearning 3. Despair 4. Recovery

12 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

13 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

14 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

15 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

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

17 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:- 1. Anxious attachment 2. Compulsive self-reliance 3. Compulsive caregiving

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19 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

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

22 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.

23 SECURE PARENTING Overall Parenting Good 1)Childhood Vulnerability Low 2)Harmony in Adult Attachments 3)Overall Coping Good

24 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

25 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 1. Denial and isolation 2. Anger 3. Bargaining 4. Depression 5. Acceptance

26 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

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

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

29 Chronic Illness and Loss 1) Control 2) Self-esteem 3) Self-image 4) Role 5) Work 6) Independence 7) Stigma 8) Abandonment 9) Isolation 10) Of Future 11) Threat of Death 12) Reduced ability 13) Confidence in professionals/ drugs/ treatments 14) Loss of support

30 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

31 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.

32 Worden ’ s Tasks of Mourning Tasks that the bereaved need to accomplish 1. To accept the reality of the loss 2. To experience the emotional pain 3. To adjust to an environment in which the deceased is missing 4. To relocate the dead person within one ’ s life and find ways to remember the dead person

33 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

34 ‘ 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

35 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 ’

36 New Models of Grief 1. The multidimensional model 2. The Dual Process Model (DPM) 3. Biographical Models

37 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

38 Dimensions of Loss Susan 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?

39 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

40 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 OrientatedRestoration Orientated

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42 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)

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44 The Whirlpool of Loss Dr Richard Wilson

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

46 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

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48 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

49 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)

50 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:- 1. Being listened to 2. Feeling understood 3. Talking to someone outside their social network 4. Information about Grief 75% found support helpful, but 25% were unsatisfied

51 Health Professionals Perspective

52 Mixture of Emotions Contentment Relief Fear Guilt Sadness Anger Frustration Weariness

53 Working with trauma and loss Long term exposure can produce:- Þ Helplessness Þ Fear and anxiety Þ Sense of unfairness Þ Anger Þ Sadness Þ Guilt Þ Cancer phobia

54 Hands up if any of you recognise any of these psychological traits in yourself Perfectionist Overly conscientious Tendency to seek approval- ’ People Pleasing ’ Need to control others Great sense of responsibility Chronic self-doubt Uncomfortable with praise Ability to delay gratification

55 Emotional Response 31% Strong emotional impact to death 23% Very disturbed by death 47%Upset when thinking of patient 24%Numb GRIEF Longer care time  Stronger emotional reaction Longer care time  Increased satisfaction

56 Top 5 ‘ Soul Killers ’ 1. Isolation 2. Anger 3. Fear 4. Exhaustion 5. Shame A difficult palliative care case can provide opportunities for all these!

57 Potential Risks We are repeatedly faced with loss and grief, and grief can be cumulative Staff grieve for patients lost and perceived or actual failure to achieve quality care Lack of closure Conflict within staff and team Unresolved grief or recent personal bereavement

58 Five ways to survive as a doctor 1. Make sure you do other things other than work 2. Create your dream work schedule 3. Learn to say ‘ No ’ - without feeling guilty 4. If you need help, ask for it 5. Seek peer support

59 Are you burning out? 1. Chronic fatigue - exhaustion, tiredness, a sense of being physically run down 2. Anger at those making demands 3. Self-criticism for putting up with the demands 4. Cynicism, negativity, and irritability 5. A sense of being besieged 6. Exploding easily at seemingly inconsequential things 7. Frequent headaches and gastrointestinal disturbances 8. Weight loss or gain 9. Sleeplessness and depression 10. Shortness of breath 11. Suspiciousness 12. Feelings of helplessness 13. Increased degree of risk taking

60 BURNOUT BEATING BEHAVIOUR Belief in yourself Unconditional Positive Regard For Others Regular exercise and social contact Never lose sense of humour Outings and Holidays Understand Hardiness Commitment Control Challenge Competent Composed Time Management

61 How to beat stress H oliday - try to plan at least one each year with a change in activities and surrounding. O pen up - if your relationship is part of the problem. Communication is very important. W ork - is that the problem? What are your options? Could you retrain? What aspects are stressful? Could you delegate? Could you get more support? T ry to concentrate on the present don't dwell on the past or future worries. O wn up to yourself that you are feeling stressed - half the battle is admitting it! B e realistic about what you can achieve. Don't take too much on. E at a balanced diet. Eat slowly and sit down allowing at least half an hour for each meal. A ction plans - try to write down the problems in your life that may be causing stress, and as many possible solutions as you can. Make a plan to deal with each problem. T ime management - plan your time, doing one thing at a time and building in breaks. Don't make too many changes at one in your life. S et priorities - if you could only do one thing, what would it be? T alk things over with a friend or family member or someone else you can trust and share your feelings with. R elaxation or leisure time each day is important. Try new ways to relax such as yoga, aromatherapy or reflexology. E xercise regularly - at least 20 minutes 2 or 3 times a week. This is excellent for stress control. Walking is good - appreciate the countryside. S ay no and don't feel guilty. S eek professional help if you have tried these things and still your stress is a problem.

62 Slow Dance Have you ever watched kids On a merry-go-round? Or listened to the rain Slapping on the ground? Ever followed a butterfly's erratic flight? Or gazed at the sun into the fading night? You better slow down. Don't dance so fast. Time is short. The music won't last. Do you run through each day On the fly? When you ask How are you? Do you hear the reply? When the day is done Do you lie in your bed With the next hundred chores Running through your head? You'd better slow down Don't dance so fast. Time is short. The music won't last.

63 Ever told your child, We'll do it tomorrow? And in your haste, Not see his sorrow? Ever lost touch, Let a good friendship die Cause you never had time To call and say,"Hi" You'd better slow down. Don't dance so fast. Time is short. The music won't last. When you run so fast to get somewhere You miss half the fun of getting there. When you worry and hurry through your day, It is like an unopened gift.... Thrown away. Life is not a race. Do take it slower Hear the music Before the song is over.

64 Conclusion Complex and difficult issues- help available from Hospice or Cancer Care Potential strong emotional reactions Potential satisfaction and reward for staff Coping Strategies

65 Specialist local help CancerCare is a local charity with centres in Lancaster and Kendal, providing bereavement support for all those affected by cancer. Psychological and emotional support, creative and social groups, information and complementary therapies are available free of charge from professionally qualified and experienced staff. CancerCare also offers a Children and Young Persons ’ Service supporting families before and after bereavement. Clients can either self refer or be referred by others eg GP ’ s, Macmillan nurses, Cancer specialist nurses.

66 If you ever need hospice help David Barnett – Hospice Chaplain with wealth of experience and advice Christine Townson – Bereavement counsellor


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