25 - End of Life Care

Question 1

What are the stats of death 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

Question 2

What are the main 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

What is palliative care?

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.

Question 4

What are the benefits of early referral to palliative care?

Answer 4

Temel: advanced lung cancer patients
- Better quality of life and survived long (11.6 months vs. 8.9 months) compared to patients receiving standard care.

Bakista: newly diagnosed with advanced cancer
- Higher quality of life scores and mood compared to patients receiving only oncology care.

Cheng:
- Minimises caregiver distress and aggressive measures at the end of life

Question 5

How should a clinician introduce specialist palliative care services?

Answer 5

• 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 and correct misconceptions about palliative care services
• Discuss role of the PC team
• Explain that the patient will still be followed up by primary health care team and/or specialist where applicable

Question 6

What is the difference between bereavement, grief and mourning?

Answer 6

Bereavement: the state of having experienced a loss

Grief: the passive and involuntary reaction to that state of bereavement, including affective, cognitive, physical, behavioural, social and spiritual aspects

Mourning: the active processes of coping with bereavement and grief; social/public displays of ‘grief’, based on cultural, religious, philosophical beliefs

Question 7

What is grief?

Answer 7

• Normal process of adjustment to loss
• Refers to the responses to the loss – emotional, physical, cognitive, behavioural, social, spiritual
• Grief is chaotic and unpredictable, you don’t recover. Mourning never complete (triggers)

Question 8

What is complicated grief?

Answer 8

~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;

• Chronic: Unusually intense, overwhelming and/or prolonged symptoms
• Inhibited: Lacking the usual symptoms and/or onset of symptoms is delayed

Differential diagnosis; depression, PTSD

Question 9

Who are at high-risk for complicated grief?

Answer 9

• 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 10

What are some compounding factors that may affect grief reactions/response?

Answer 10

• Length of time to prepare for death
• Relationship between bereaved and the deceased
• Nature of relationship (Interdependence, Amicable – more “acceptance”/less other issues, Ambivalence – unresolved issues, conflict – regret)
• Resultant changes in lifestyle
• Physical and mental health of the bereaved
• History of loss
• Religion

Question 11

Describe the results from studies on the “Widower effect”

Answer 11

9-year study, followed over half a million elderly couples (over age 65)

When one person becomes seriously ill or dies, that 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: dementia, psychiatric illness)

Question 12

Describe the early stage theories of grieving

Answer 12

Kubler Ross (1969): 5 stage theory of grieving

• Very influential in the field
• Originally for anticipatory grief, told they had terminal illness

Defined by the following distinct stages of grief

1. Denial
2. Anger
3. Bargaining (let me live to see x)
4. Despair/Depression
5. Acceptance

Question 13

Describe the early task theories of grieving

Answer 13

Specific tasks or processes to be “completed” in the process of grieving in order to deal with the loss

Worden (1982)
- Defined in an action-orientated way

Tasks of Grief

• To accept the reality of the loss
• Experience the pain of the loss
• Adjust to the new environment without the lost person
• Reinvest in the new reality

Question 14

What are the benefits of stage/task theories of grief?

Answer 14

• 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

Question 15

What are the weaknesses of stage/task theories of grief?

Answer 15

• 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 orientated (“moving on”)
• Cannot explain gender differences
• Common experiences may be pathologised

Question 16

What are the typical patterns of grief as described by Bonnanno (2002)?

Answer 16

Identified various patterns of response to loss (from 3 years pre-loss to 18 months post-loss)

~90% of partners/spouses could be categorised into one of the following groups:

• Resilience (46%) – distress is at low levels all along
• Chronic Grief (16%) – loss brings distress and distress lingers
• Common Grief (11%) – heightened distress diminishing after the death
• Depressed Improve (10%) – individuals depressed before the loss become LESS depressed after the death
• Chronic Depression (8%) – individuals depressed before the loss REMAIN depressed after the death

Question 17

How are current theories of grief changing?

Answer 17

• 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 18

Describe Stroebe and Schut’s (1999) Dual Process Model of grief

Answer 18

Coping Model: Oscillation between:

• Loss-orientated coping - The emotional and reactive process of loss (ruminating and yearning)
• Restoration-orientated coping - Dealing with the many life changes and new roles brought about by the death

Question 19

What are the strengths of the Dual Process Model of grief?

Answer 19

Addresses the difficult 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-orientated coping)
• Gender Differences (Women tend to cope more in loss-orientated ways, men in restorative-orientated ways)
• Cultural Differences

Question 20

Describe dignity therapy for grief intervention

Answer 20

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

Question 21

What are the benefits of dignity therapy?

Answer 21

Compared to client-centred care or standard palliative care, Dignity therapy significantly improved

• Quality of life, sense of dignity, how their family saw and appreciated them and was helpful to their family
• DT significant improved spiritual wellbeing and lowered patient’s level of depression and sadness

Question 22

How efficacious are grief interventions?

Answer 22

• Weak evidence for the general bereaved population
• The more complicated the grief is, the better chance that the intervention will benefit, generally some time after the loss.
• Intervention efforts should be focused on identifying and engaging high-risk mourners, e.g. bereaved mothers, sudden violent death.
• As grief is so individualised, effective support often combines approaches including individual counselling, online support, support groups and psycho-educational programs.