Bereavement care in hospice care Hospice nurse specialist: Jade Lam Oncology Department TMH March, 2007

Nurse's favorite position in bereavement care: -nurse is involved in care -know the disease process -present in moment of death

Definitions: -Bereavement: the reaction to loss of a loved person -Grief: the normal psychological reaction to loss -Mourning: the social expression of grief

Why grief experiences: Attachment theory (John Bowlby, 1980) -an inborn relationship between human beings -attachment comes from a need for security and safety -normal behavior for child and adult to form attachment with significant others

Risk factors: Relating the bereaved: -ambivalent relationship -dependent bereaved e.g. old or young or close support from deceased -bereaved has unresolved previous loss and reluctant to face loss -lack of communication and support among the family -concurrent family stress e.g. finance, lack of social support -low self esteem / dysfunctional coping / psychiatrics illness

Risk factors: Relating the death: -very sudden deterioration process -death unexpected at that time -carer not present at death -very long dying process -death not peaceful or with extreme distress -death by suicide -memories of uncontrolled symptoms

Reactions facing loss: Body reactions: - Tightness of chest & throat - Anorexia - Dryness of mouth - Headache - Insomnia - Muscle weakness - Difficult to concentrate - Lack of energy & motivation - Cry & sadness

Emotional reactions: - Sadness - Released - Anger - Avoidance - Guilt - Longing for - Anxiety - Numbness - Loneliness - Helpless - Painful - Fear

Behavioral reactions: -Talk with thing of deceased -Longing for back of deceased -Feeling existence of deceased -Afraid of death as deceased -Memorizing living with deceased -Memorizing deceased’s days before death

Maladaptation towards grief: -Abuse of drugs or alcohol -Force oneself to be strong -Not allowing to cry -Use many affairs to cover oneself -Suppress emotional sharing -Keep on blaming oneself -Force oneself to grief for remaining life

Pathological grief reactions: -Prolonged grief -Delayed grief -Exaggerated grief -Distorted grief

Four tasks of mourning (Worden, 1991) -Accepting the reality of loss -Experiencing the pain of grief -Adjusting an new environment and own sense of self -Reinvesting in another relationship

Rando (1993): 6 ‘R’s bereavement phase 1.Recognize the loss 2.React to the separation 3.Recollect & re-experience the deceased & the relationship 4.Relinquish the old attachments to the deceased & the old assumptive world 5.Readjust to move adaptively into the new world without forgetting the old 6.Reinvest.

Nursing interventions: Before the death: -increase acceptance of reality of death by keeping informing the progress of the illness and psychological reactions -facilitate expression of grief -acknowledge and dealing feelings e.g. anger, guilt

-acknowledge the change in family relationship, living, activities and arrangement -explore anxiety and expectations of impending happenings -help to finish unfinished business of both patient and relatives -appreciation and invite to involve in care -encourage to touch, talk, thank, goodbye and accompanying including at the last moment, with providing privacy

-concern family physical and psychological stress, provide respite care if indicated -identify risk factors and abnormal grief : persistent guilt, anger, anxiety, depression, isolation etc. and if necessary making referral for individual counseling, family sessions or group support -encourage and facilitate direct and honest communication between patient and relatives -facilitate interfamily or other support systems

At dying or moment of death: -Explain the conditions and what had been done and stay for a while -Discuss the wish of accompanying at the last moment -Allow to express emotions or accompany patient with sufficient time with privacy to make the loss real

-Keep peaceful appearance is important (important for bereavement process since always recall the scene in grief process) -Encourage to touch, to care and to clean, can use of ‘Tibet style of goodbye’ that is to shy or say something with patient’s respiration to allow patient to feel someone have a same pace with him -Facilitate spiritual, religious and cultural practices if indicated -Encourage to say last words

Event & effect : e.g. diagnosis & prognosis death of significant other divorce, miscarriage…... Settlement Past Future Infinity Model

Event & effect Settlement past life to diagnosis (from beginning to now) Future Infinity Model

Event & effect Settlement Past all they would have been if there was no the diagnosis that is the hopes, dreams, the lost thing; represents rehearsal for living in the absence of... Infinity Model

Event & effect Settlement:to go back to mid-point to plan now again Past Future Infinity Model

Principle of bereavement counselling: -Start before death of patient -More listening & use of self experience -Foster ways to release emotions -Respect bereaved’s own ways of coping -Affirm grief process being necessary & normal -Facilitate exploring potential & new interest -Support especially during important days -Understand own’s limitation & make referral if in need

Children bereavement: To tell or not to tell: - Children can aware the change in daily living, the sadness on the face, easy get into temper and tension of the relatives. However, they do not know the fact, the uncertainty make them feel puzzle and anxious. Some of them even believe that their ‘naughty behavior’ cause the disease

-With clear explanation, participation in care can calm down the emotion and ability in accepting the fact. -If not tell, children may believe that their wrongdoing causes the illness resulting withdrawal, rebellious, dependency and deterioration in performance. It may cause further pressure to themselves and withdraw, rebellious and deterioration in performance. It further triggers negative comment from the adult and result in vicious cycle. -Usually, children can adapt the situation well with clear explanation, reassurance and emotional support.

How to tell Suggestion to relatives to: explain what happened, what is cancer, what treatment has been done and the effect, the possible death but not know the time. What we can do, such as making use of the remained time to go along with him no need to avoid share feelings and sadness with children because it also encourages them to share their feelings and makes them to know they are not alone in suffering the pain and missing the deceased

use directly the word of ‘death’ instead of words such as sleeping, leave, journey etc., otherwise, increased puzzle and not knowing how to follow more support to increase sense of safety and being loved e.g. physical touch such as huddling, and reassure who will continue to care them even father die if not know how to answer, just to tell ‘I don’t know and would to find the answer together

encourage children to ask questions and clear if any confused ideas reassurance about the future care to the children, can strength the coping by story telling can tell somebody you trust such as your classmates, may be they also need your support one day explain about the change of appearance e.g. ‘although he looks different, he is still the one who love you as before’ and ask the feelings after seeing the beloved relative explain the possible reactions of the children

Support to children at the moment of death: Explain the relative is going death and will leave us forever and cannot to live with use anymore, with support by touch To show understanding about the sense of e.g. unbelievable, afraid, missing Prepare the appearance of relative

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