HL9 - End of life issues and Palliative Care

Question 1

How many deaths are there each year in Australia?

Answer 1

• 150,000 deaths
  
  • 50% have warning of death
  • 30% are referred to specialist palliative care services
  • Majority of Australians are not dying the way they would like
    
    • Only 14% die at home

Question 2

What are common end of life issues?

Answer 2

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

Question 3

What are the goals as illness progresses?

Answer 3

Very intensive at the start

Question 4

What is palliative care (PC)?

Answer 4

• An approach that is supposed to ease suffering - should not only be considered at end of life
• 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)
  
  • Patient, family and carers are the centre

Question 5

What is the aim of Palliative care?

Answer 5

• Provides relief from pain and other distressing symptoms
• affirms life and regards dying as a normal process
• intends neither to hasten nor 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

Question 6

How does the old approach of palliative care compare to the new approach?

Answer 6

• Old approach = Palliative care is at the last part of life, near death
• New approach = Life prolonging care and palliative care overlap - not just around end of life

Question 7

How is palliative care different to hospice care?

Answer 7

• All of hospice is palliative care but not all of palliative care is hospice
  
  • More dignity in a hospice

Question 8

What are the benefits of early referral to PC?

Answer 8

• Effects of Early Palliative Care in Advanced Cancer Patients: A Meta Analysis
• 12 RCTs, n=2980 participants
• Early palliative care improves QoL and symptom intensity in advanced cancer patients, compared to standard care, at 3 months and 6 months
  PC is often a key to maintaining the highest possible quality of life

Question 9

How do we bring up/talk about PC?

Answer 9

• 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
• Explain that patient will still be followed up by primary health care team and/or specialist (where relevant)
• Discuss role of the PC team & benefits of PC
• Question prompt lists or information booklets

Question 10

What is grief?

Answer 10

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

Question 11

How long does grief last?

Answer 11

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

Question 12

Are there normal or abnormal grief reactions?

Answer 12

• Grief affects people in different ways & is overwhelming
• What behaviour is outside “normal” limits?
• It is all relative => what is the “norm” for the person?
• is it affecting their to function or is it our own discomfort?
• Danger of labelling people
• We develop an altered life in which the person has adapted to the loss

Question 13

What are patterns of grief?

Answer 13

• (Bonanno et al., 2002) Identified various patterns of response to loss (from 3 years pre-loss to 18 months post-loss)
  
  • Interviewed people after SARS, 9/11 and other well-known traumatic events
• ~90% of partners/spouses could be categorised into one of the following groups
• Resilience was thought to be quite rare but shows more common than though
• Depression either improved or remained

Question 14

What is dignity therapy?

Answer 14

• Chochinov et al., 2011
  
  • Individualised psychotherapeutic intervention addressing psychosocial and existential distress of terminally ill patients
  • Provides an opportunity to reflect on things that matter the most to patients or that they would most want remembered - using a formal written narrative of the patients life
  • Compared to client-centered care or standard palliative care only - Dignity therapy significantly improved
    
    • Sense of dignity
    • Patients quality of life
    • spirtual wellbeing
    • how their family saw and appreciated them
    • Lowered patient’s levels of depression and sadness
    • Perceived as helpful to their family