25 End of life issues & Palliative 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 woman are referred to specialist palliative care services

The majority of Australians are not dying the way they would like to

Question 2

What is the main end of life issues?

Answer 2

• Uncertainty
• Fear of pain and suffering
• Fear of process of dying - not the act itself but the process of the death
• Decision-making: advanced directives
• Carer feelings of inadequacy
• Practical Issues
• Anticipatory grief

Question 3

What is palliative care?

Answer 3

It is an approach that improves the quality of life of patients and families facing problems associated with life-threatening illnesses, 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)

Question 4

What does palliative care integrate and what does it use?

Answer 4

Integrates psychosocial and spiritual aspects of patient care

Uses a team approach to address patients’ and their families needs

Question 5

Explain palliative care vs hospice care

Answer 5

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

Question 6

What are the benefits of early referral to palliative care?

Answer 6

Patients who received palliative care early during treatment had a better quality of life and survived longer compared to patients receiving standard care (Temel et al, 2010)

Patients who received palliative care interventions along with oncology care had higher QOL scores and mood, compared to the patients received only oncology care (Bakista et al, 2009)

Early referral to palliative care minimizes caregiver distress and aggressive measures at the end of life (Cheng et al, 2005)

Question 7

At what point should referrals be considered in terms of introducing palliative care services?

Answer 7

Referrals should be considered at any time once treatment goal changes from curative to palliative

Question 8

How should a clinician introduce specialist palliative care services?

Answer 8

• Raise the topic by being honest/open and use term ‘palliative’ explicitly
• Discuss the role of the PC team
• Clarify and correct misconceptions about PC services
• Explain that the patient will still be followed up by the primary health care team and /or specialist where applicable

Question 9

What is thanatology?

Answer 9

The study of death and dying

Question 10

What is Bereavement?

Answer 10

The state of having experienced a loss

Question 11

What is the definition of grief?

Answer 11

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

Question 12

What is mourning?

Answer 12

The active processes of coping with bereavement and grief => social/public display of ‘grief’ based on cultural, religious, philosophical beliefs

Question 13

What is grief

Answer 13

A normal and natural process of adjustment to loss. Refers to the responses to the loss and varies based on individuals
=> level of intensity, expression of grief and duration is different for each person

Question 14

How long does grief last?

Answer 14

Grief is chaotic and unpredictable -> don’t recover from grief - cannot become ‘un-bereaved’. Mourning process never complete (constant triggers/reminders)

Question 15

Explain the ‘normal or ‘abnormal’ grief reactions?

Answer 15

• Grief affects people in different ways and is overwhelming -> what behaviour is outside “normal” limits?
• It is all relative for the person - whether it is affecting their quality of life or our own discomfort with their reaction
• Danger of labelling people

Question 16

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

Answer 16

• Length of time to prepare for death e.g. unresolved issues
• Relationship between bereaved and the deceased e.g. level of significance
• Nature of the relationship e.g. amicable or ambivalence
• Resultant changes in lifestyle e.g. other losses
• Physical and mental health of the bereaved e.g. history of mental illness
• History of loss e.g. significance of other losses
• Religion e.g. fear or guilt for not believing

Question 17

Describe the results from studies on the “Widower effect”

Answer 17

When one person becomes seriously ill or dies, the risk that the caregiver spouse will also become ill or die significantly increases

Reasons for “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 18

Describe the early stage theories of grieving

Answer 18

Kubler ross (1967): 5 stage theory of grieving

• Very influential in the field
• Defined the following distinct stages of grief

Distinct stages of grief:

1. Denial
2. Anger
3. Bargaining
4. Despair/depression
5. Acceptance

Question 19

State the benefits of stage/task theories

Answer 19

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 20

State the weaknesses of stage/task theories

Answer 20

Definite number of responses to bereavement - suggesting a time-bound process

Predictive, tend to over-simplify and generalise

Normative, cannot explain gender differences and common experiences may be pathologized

Do not acknowledge the uniqueness of individual experiences of grief - outcome-oriented (“moving on”)

Question 21

How are current theories of grief changing?

Answer 21

Moved away from ‘linear’ stage models, questioning necessity and goals of “grief work”

Shift away from detachment to maintaining (symbolic) bonds with the deceased

Acknowledge of individual and cultural differences in the grief response

The pathology of “complicated grief” questioned

Development of “growth” needs

Question 22

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

Answer 22

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

• Resilience (46%)
• Chronic grief (16%)
• Common grief (11%)
• Depressed improved (10%)
• Chronic depression (8%)

Question 23

What does it mean by resilience in patterns of grief?

Answer 23

Distress is at low levels all along (46%)

Question 24

What does it mean by chronic grief in patterns of grief?

Answer 24

Loss brings distress and distress lingers (16%)

Question 25

What does it mean by common grief in patterns of grief?

Answer 25

Heightened distress diminishing after death (11%)

Question 26

What does it mean by depressed improved in patterns of grief?

Answer 26

Individuals depressed before the loss become less depressed after the death (10%)

Question 27

What does it mean by chronic depression in patterns of grief?

Answer 27

Individuals depressed before the loss remain depressed after the death (8%)

Question 28

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

Answer 28

Coping model -> oscillation between different types of coping, dealing with a different emotional reaction

Loss-oriented coping => the emotional and reactive processing of loss (ruminating & yearning)

Restoration-oriented coping => dealing with the many life changes and new roles brought about by the death e.g. attending to life changes, doing new things, a distraction from grief

Question 29

What are the strengths of the Dual Process Model?

Answer 29

Addresses difficulty of reconciling the need to move on with life and desire to remain connected with decreased

Can be applied to:

• complicated grief
• gender differences (women cope more in loss-oriented ways)
• cultural differences

Question 30

What is loss-oriented coping in the dual-process model?

Answer 30

The emotional and reactive processing of loss (ruminating & yearning) e.g. grief work, denial/avoidance of restoration changes

e.g. grief work, denial/avoidance of restoration changes, the intrusion of grief

Question 31

What is a restoration-oriented coping in the dual-process model?

Answer 31

Restoration-oriented coping => dealing with the many life changes and new roles brought about by the death

e.g. attending to life changes, doing new things, a distraction from grief, new relationships

Question 32

Describe dignity therapy for grief intervention

Answer 32

(Individualised psychotherapeutic intervention) Addresses 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 33

What are the benefits of dignity therapy?

Answer 33

Compared to the 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
• DT improves spiritual wellbeing and lowered patients’ levels of depression and sadness