Grief

Question 1

Each year in Australia…

Answer 1

~ 150,000 deaths
~ 50% of whom will have a warning of their death
~ 30% of whom are referred to specialist palliative care services.
- the majority of Australians are not dying the way
they would like to (“Dying well” report, 2014)

Question 2

End of life issues

Answer 2

• Uncertainty – what will happen to me?
• Fear of pain and suffering
• Fear of the process of dying
• Decision-making: advanced directives
• Carer feelings of inadequacy
• Practical issues
• Anticipatory grief

Question 3

Palliative care (PC)

Answer 3

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification and assessment and treatment of pain and other problems, physical, psychosocial and spiritual. (WHO, 2002)

• provides relief from pain and other distressing symptoms
• affirms life and regards dying as a normal process
• intends neither to hasten or postpone death
• integrates the psychological and spiritual aspects of patient care
• offers a support system to help pa0ents live as actively and comfortably as possible until death
• uses a team approach to address patients’ AND their families’ needs
• is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life

Question 4

PALLIATIVE CARE vs HOSPICE

Answer 4

All of hospice is palliative care, but not all of palliative care is hospice

Question 5

Benefits of early referral to PC

Answer 5

Temel et al (2010): RCT (n=151 advanced lung cancer patients)
– patients who received palliative care EARLY on during treatment had a better QOL and survived longer (11.6 months versus 8.9 months) compared to patients receiving standard care

• Bakista et al (2009): RCT (n=322 patients newly diagnosed with advanced cancer)
– patients who received palliative care interventions along with oncology care had higher QOL scores and mood, compared to the patients who received only oncology care

• Cheng et al (2005):
– early referral to palliative care minimizes care giver distress and aggressive measures at the end of life

PC is often a key to maintaining the highest possible quality of life

Question 6

Challenge: Introducing specialist PC services

Answer 6

• Referral to PC services should be considered at any time once treatment goal changes from curative to palliative
• Refer to the PC health professionals as part of multidisciplinary team
• Raise the topic by being honest/open and use term palliative care explicitly
• Clarify & correct misconceptions about PC services
• Discuss role of the PC team
• Explain that patient will still be followed up by primary health care team and/or specialist where applicable

Question 7

Terms & Definitions

Answer 7

• Thanatology – The study of death and dying
• Bereavement – The state of having experienced a loss
• Grief – The passive and involuntary reaction to the state of bereavement, including affective, cognitive, physical, behavioural, social and spiritual aspects

• Mourning – The active processes of coping with
bereavement and grief; social/public display of ‘grief’, based on cultural, religious, philosophical beliefs

Question 8

What is grief?

Answer 8

• Normal process of adjustment to loss
• Refers to the responses to the loss – emotional, physical, cognitive, behavioural, social, spiritual
• What is lost – past & future
• Level of intensity, expression of grief and duration is different for each person.

Question 9

How long does grief last?

Answer 9

• Grief is chaotic and unpredictable
• You don’t recover from grief
=> cannot become ‘un-bereaved’
• Mourning process is never complete: triggers/reminders

Question 10

“Normal” or “abnormal” grief reactions?

Answer 10

• Grief affects people in different ways & is overwhelming
• What behaviour is outside “normal” limits?
• It is all relative – what is normal?
– what is the “ norm” for the person?
– is it affecting them to function or is it our own discomfort?
• Danger of labeling people

Grief	reactions,	and	failure	to	
return	to	one’s	baseline	is	
therefore	not	a	sign	of	abnormal	
grief.	Instead	a	more	realistic	aim	
is	an	altered	life	in	which	the	
person	has	adapted	to	the	loss.

Question 11

Complicated grief

Answer 11

• ~10% of bereaved persons
• defined as a deviation from the “normal” (in cultural and societal terms) grief experience in either time course, intensity, or both
• many categories of complicated grief proposed in the literature, but most include the following basic
distinction:
– Chronic: unusually intense, overwhelming and/or prolonged symptoms

– Inhibited: lacking the usual symptoms and/or onset of symptoms is delayed

Question 12

Complicated Grief: High-risk categories

Answer 12

• Men who lose spouse
• Mothers who lose children
• Survivors of sudden and/or violent traumatic loss
• History of mental illness, addiction, abuse or trauma
• Low self esteem
• High dependency on the deceased
• High distress early in bereavement

Question 13

Differential diagnosis of complicated grief

Depression

Answer 13

Perceptions of self worthlessness
Anhedonia
Ruminatin on negative events
Disrupted memory

Question 14

Differential diagnosis of complicated grief

PTSD

Answer 14

Perceptions	of	
self	as vulnerable	
Fear, panic	
Avoidance of	trauma reminders	
Intrusive	memory

Question 15

Differential diagnosis of complicated grief

Complicated Grief

Answer 15

Perceptions	of							
self	as	alone	
Existential loneliness	
Seeking	comfort						
in past/reminders	
Hyperactive	memory

Question 16

Compounding factors that may affect

grief reactions/ response

Answer 16

Length of time to prepare for death
• use of time to prepare -unresolved issues
• over-prolonged dying–being a carer, relief, loss

Relationship between bereaved and the deceased
• level of significance –investment

Nature of the relationship
• interdependence
• amicable- more ‘acceptance’ /less other issues
• ambivalence -unresolved issues, conflict -regret

Resultant changes in lifestyle
• other losses incl.$, status, move house

Physical and mental health of the bereaved
• history of mental illness
• substance abuse
• coping mechanisms

History of loss
• Significance of other losses

Religion
• context for understanding death, support
• anger at God
• fear or guilt for not believing

Question 17

Caregivers: The Widower Effect

“Dying of a broken heart” (Christakis et al, NEJM, 2006)

Answer 17

• 9-year study, followed over half a million elderly couples (over age 65)
• When one person becomes seriously ill or dies, the risk that the caregiver spouse will also become ill or die significantly increases:

– During the first 30 days following the death of a spouse:
• A wife’s risk of death increases by 61%
• A husband’s risk of death increases by 53%

– After one year:
• A wife’s risk of death increases by 17%
• A husband’s risk of death increases by 21%

• Reasons of “healthy” partner’s declining health:
– increase in unhealthy behaviour; withdrawal from social networks
• The level of risk for the caregiver’s death varies, depending on the type of medical condition of the ill spouse (highest risk:1. dementia; 2. psychiatric illness)

Question 18

Early STAGE theories

• Kubler Ross (1969): 5 stage theory of grieving

Answer 18

• very influen0al in the field
• defined the following distinct STAGES OF GRIEF:
  1. Denial
  2. Anger
  3. Bargaining
  4. Despair/Depression
  5. Acceptance

Question 19

TASK theories

Answer 19

• specific tasks or processes to be “completed” in the process of mourning, in order to deal with the loss

Worden (1982, 1996, 2002): 4 tasks of mourning- defined in an action-oriented way:

1. To accept the reality of loss
2. To work through the pain of grief
3. To adjust to an environment in which the deceased is missing
4. To emotionally relocate the deceased and move on with life

Question 20

Benefits of stage/task theories

Answer 20

• Stage theories useful as therapeutic tools to normalise the experience of individuals
• Task theories define specific actions that the bereaved can take to help them cope with the loss
• Their simplicity makes them easy to understand
• Can explain experiences/feeling during anticipatory grief
(Kato & Mann, 1999)

Question 21

Weaknesses of stage/task theories

Answer 21

• A definite number of responses to bereavement, suggesting a time-bound process
• Predictive, tend to over-simplify and generalise
• Normative
• Do not acknowledge the uniqueness of individual experiences of grief – outcome oriented (“moving on”)
• Cannot explain gender differences
• Common experiences may be pathologised
- e.g. “unresolved”grief is part of most bereaved parents’ experiences

Question 22

Critique of stage theories

Answer 22

Stage theories have a certain seductive appeal - they
bring a sense of conceptual order to a complex process and offer the emotional promised land of ‘recovery’ and ‘closure’. However they are incapable of capturing the complexity, diversity and idiosyncratic quality of the grieving experience.

Stage models do not address the multiplicity of physical, psychological, social and spiritual needs experienced by the bereaved, their families and intimate networks. (Hall, 2011)

Question 23

Patterns of grief (Bonano et al,2002)

Answer 23

• Identified various patterns of responses to loss (from 3 years pre-loss to 18 months post-loss)
See notes for types.

Question 24

Theories of Grief: Current trends

Answer 24

• Move away from ‘linear’ stage models
• Questioning the necessity and goals of “grief work”
• Shift from detachment to maintaining (symbolic) bonds with the deceased
• Acknowledgement of individual and cultural differences in the grief response
• The pathology of “complicated grief” questioned
• Development of “growth” models

Question 25

Stroebe & Schut (1999): DUAL PROCESS MODEL

Answer 25

Coping Model - OSCILATION between: § Loss-orientated coping – the emotional and reactive processing of loss (ruminating and yearning) § Restoration-orientated coping - dealing with the many life changes and new roles brought about by the death

Question 26

Stroebe & Schut (1999): DUAL PROCESS MODEL | Strengths

Answer 26

• addresses the difficulty of reconciling the need to move on with life and the desire to remain connected with the deceased • can be applied to explain: – complicated grief - chronic = absence of restorative coping - inhibited = absence of loss-oriented coping – gender differences - women tend to cope more in loss-oriented ways, men in restorative-oriented ways – cultural differences

Question 27

Dual process model: Clinical applications

Answer 27

* Individuals benefit more when treatment concentrates on the type of coping processes they are less accustomed to * Evidence: a behavioural approach for women and a supportive person-centred intervention for men lowered distress after treatment, but not the other way around

Question 28

Meaning reconstruction (Neimeyer, 2005)

Answer 28

* A process of reaffirming or reconstructing a world of meaning that has been challenged by the loss * An active process of striving to integrate a loss into one’s life * Recognition that bereavement affects the continuing life of the mourner; there is no need to ‘let go’ or ‘get over it’ * A failure to find meaning after the loss (i.e. ‘making sense’ of the death) is associated with higher levels of complicated grief symptoms and in the long-term depression (Hall, 2011) * ‘Meaning reconstruction’ involving blame/negative evaluations lead to poorer outcomes than those with non-judgemental reflections (Park, 2010)

Question 29

‘Meaning reconstruction’: Clinical implications

Answer 29

* Meaning making is a process, not a final outcome * When clients are struggling with ‘meaning-making’, it is important to facilitate this process * YET, when clients do not spontaneously engage in a search for meaning, therapists should be cautious about initiating the process

Question 30

Dignity therapy (DT)

Answer 30

• Individualised psychotherapeutic intervention addressing psychosocial and existential distress of terminally ill patients • Provides an opportunity to reflect on things that matter most to the patients or that they would most want remembered, using a formal written narrative of the patient's life (Chochinov et al (2011) The Lancet Oncology, 12:753 –762) • Compared to client-centred care or standard palliative care, Dignity Therapy significantly improved: patients‘ QoL, sense of dignity, how their family saw and appreciated them and was helpful to their family • Compared to client-centred care, Dignity Therapy significantly improved spiritual wellbeing and lowered patients‘ levels of depression and sadness.

Question 31

Efficacy of grief interventions

Answer 31

• Weak evidence for the general bereaved population (Jordan & Neimeyer, 2003; Hall, 2011). • The more complicated the grief is, the better chance that the intervention will benefit, generally some time after the loss (Schut,Stroebe, van den Bout & Terheggen, 2001). • Intervention efforts should be focused on identifying and engaging high-risk mourners, e.g. bereaved mothers, sudden violent death (Jordan & Neimeyer, 2003). • As grief is so individualised, effective support often combines approaches including individual counselling, online support, support groups and psycho-educational programs (Hall, 2011).