L25 Palliative Care and Grief

Question 1

End of Life issues

Answer 1

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 (before the death)

Question 2

Palliative care

Answer 2

Palliative care (PC) 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)

Question 3

Key features of palliative care

Answer 3

• 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 patients 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 “A good death” - documentary program (Tutorials

Question 4

Palliative care: OLD vs NEW APPROACH

Answer 4

Diagnosis of serious illness at the beginning. Life prolonging care is now phased out as palliative care is phased in.
Then Hospice care is right at the end.

Palliative care continues into bereavement.

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

Question 5

Benefits of early referral to Palliative Care 3 studies

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 received only oncology care

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

Question 6

Challenge: Introducing palliative care (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 treating / multidisciplinary team
• Raise the topic by being honest / open and use term ‘palliative care’ explicitly
• Clarify and 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

Thanatology

Answer 7

the study of death and dying

Question 8

Bereavement

Answer 8

The state of having experienced a loss

Question 9

Grief:

Answer 9

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

Question 10

Mourning:

Answer 10

The active processes of coping with bereavement and grief; social/ public display of ‘grief’, based on cultural, religious, philosophical beliefs
(Rando, 1995; Worden, 2002)

Question 11

What is grief? more generally

Answer 11

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. How long does it last?
• Grief is chaotic and unpredictable
• You don’t recover from grief => cannot become ‘un-bereaved’
• Mourning process is never complete: triggers/reminders
• It is all relative => what is the norm for the person? -or is it our own discomfort? Dpn’t project our own uncomfortableness onto he person.

Question 12

• Factors affecting grief experience

Answer 12

Compounding factors that may affect grief responses
Length of time to prepare for death
Relationship between bereaved and the deceased
Resultant changes in lifestyle
Physical and mental health of the bereaved
their History of loss
Religion

Question 13

Caregivers: The Widower Effect “Dying of a broken heart” (Christakis et al, NEJM, 2006)

Answer 13

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 (drinking, driving recklessly etc)
• 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)
Mental illness was at the top and physical illnesses were second.

Question 14

Early STAGE theories of GRIEVING

Answer 14

• Kubler Ross (1969): 5 stage theory of grieving (originally designed to explain anticipatory greif)

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

Early TASK theories
• specific tasks or processes to be ‘completed’ in the process of grieving in order to deal with the loss
Worden (1982, 1996, 2002)
- 4 tasks of grieving - defined in an action-oriented way
T – To accept the reality of the loss
E – experiencing the pain of the loss
A – Adjust to the new environment without the lost person
R – Reinvest in the new reality

Question 15

BENEFITS of stage / task theories

Answer 15

• 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 16

WEAKNESSES of stage / task theories

Answer 16

• 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
incapable of capturing the complexity, diversity and idiosyncratic quality of the grieving experience.

Question 17

CURRENT models of grief

Answer 17

Patterns of grief (Bonanno et al, 2002)
• 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:

1. Resilience (46%) Distress is at low levels all along
2. Chronic grief (16%) Loss brings distress and distress lingers
3. Common grief (11%) Heightened distress diminishing after the death
4. Depressed improved (10%) Individuals depressed before the loss become LESS depressed after the death
5. Chronic depression (8%) Individuals depressed before the loss REMAIN depressed after the death

Question 18

Theories of Grief: Current trends

Answer 18

• 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 19

Stroebe & Schut (1999): DUAL PROCESS MODEL

Answer 19

Loss-orientated coping - the emotional and reactive processing of loss (ruminating & yearning)
Restoration-orientated coping - dealing with the many life changes and new roles brought about by the death
There is OSCILATION between these in everyday life experience
• To reflect on how to provide effective grief and bereavement interventions/support

Question 20

Dignity therapy (DT)

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 (Chochinov et al (2011) The Lancet Oncology, 12:753 – 762)
• 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
• Compared to the client-centred care, Dignity Therapy significantly improved spiritual wellbeing and lowered patients levels of depression and sadness.

Question 21

Efficacy of grief interventions

Answer 21

• 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).