Dr Emma Burns - Consultant

Central Adelaide Palliative Care Service

 I would like to acknowledge the Kaurna people as the
traditional owners of the land we meet on today
CURRENT CONTEXT
CONTEXT
 Palliative Care: is care that helps people live their life
as fully and as comfortably as possible when living
with a life-limiting or terminal illness.
 Palliative Care: identifies and treats symptoms which
may be physical, emotional, spiritual or social.
 Palliative Care: is a family-centred model, meaning
that family and carers can receive practical and
emotional support.
 Palliative Care Team: all of us
 The ‘palliative approach’
CONTEXT - CAPCS
 Level 6 Palliative Care Service
 Partnered with Level 4 and 2 services e.g. Adelaide Hills,
Eyre Peninsula
 TQEH, RAH, MPH Hospice at Calvary (mixed public/
private)
 Three arms:
 Inpatient (TQEH -12, RAH -4, MPH -16)
 Consult liaison (TQEH, RAH)
 Community including RACF
 After hours on call service – doctors, nurses
CONTEXT
 Based on individuals needs, the services offered may
include:
 Symptom relief
 Resources (equipment)
 Assistance with discussions, care planning
 Links to other services
 Support for people to meet cultural obligations
 Support for emotional, social and spiritual concerns
 Counselling and grief support
 Referrals to respite care services
 (Ref: Palliative Care Australia)
 Supporting patients’ access to care, goals of care, site of
care throughout illness to death
WHO WE SEE AS A SPCS
 Patient has a well-defined life-limiting illness
 AND there is associated complexity
 Examples of ‘red flags’ for potential complexity:
 Diagnosis assoc with high symptom burden
 Young(er) patient/ small children involved
 Comorbid psych illness
 Comorbid drug and alcohol
 High distress in family network
 Compounding losses
 Socioeconomic vulnerability
 Domestic or family violence
 Increased vulnerability to both poor patient outcomes and poor
outcomes for the carer network
 Aboriginal people with life-limiting illness – and their
networks - are more likely to have complexity
associated with the illness and are vulnerable to poor
outcomes
HEALTH CONTEXT
 Reduced access to:
 Primary health care
 Chronic disease screening and treatment
 Vaccinations
 Specialist care
 Resulting in different distribution and severity of many
illnesses
 Multiple factors contribute to high levels of morbidity,
increased rates of adult mortality (focused on 35-44, 45-54
age groups) and lower life expectancy
 Particular patterns of presentation, admission and
management
 Particular palliative care needs
OTHER FACTORS
 Cultural safety and trust
 Institutional racism
 Western biomedical model not necessarily wholly shared
 Compounded grief and loss
 Communication
 System inflexibility
 Impact of disadvantage
 Challenges of provision of care
 In rural and remote areas
 To patients who move between locations and services
(especially when considering eg opioid prescription)
COMPOUNDING LOSSES
 Large body of grief literature overwhelmingly tells us that
individuals (and groups) exposed to:
 Multiple losses
 Traumatic losses (suicide, violent death)
 Losses ‘out of time’ i.e. loss of young people
 Sudden, unexpected losses without possibility of preparation
 ..are more likely to be profoundly and persistently
impacted by the loss
 …AND experience a range of sequalae such at PTSD, MDD,
and Prolonged Grief Disorder (with associated morbidity
and mortality)
DIVERSITY AND RESILIENCE
 Protective impacts:
 Strong family bonds
 Strong community bonds
 Relationship with land and country
 Spirituality/ belief frameworks including beliefs about
death and dying

 Each individual has a unique profile of vulnerabilities

and protective factors at any point in time
 We need to listen to our patient to find out who they
are
CONTEXT
 Despite potential vulnerability to poor outcomes,
Aboriginal and Torres Strait Islander peoples
 are under-represented in the palliative and end-of-life care
populations
 are under-represented in research relevant to palliative and
end-of-life care
 are under-represented in the (Palliative Care)health
workforce and among those with higher education health
qualifications
 Urgent need for cross-pollination between Palliative
Medicine and Aboriginal health - this has long been
identified but change is slow
WHY PALLIATIVE CARE?
PERCEPTIONS OF PALLIATIVE CARE
 How we see Palliative Care:
 Involvement with patient and network over course of
illness, early referral encouraged
 Focus on quality of life, dignity and respect
 In parallel with active and sometimes life-prolonging
therapies
 Support of patient AND network including bereavement
care
 Advocacy and care planning as critical role
 Proportional use of medication to relieve of distress
PERCEPTIONS OF PALLIATIVE CARE
 How others see Palliative Care:
 Community blog – “the Palliative Care staff can tell
within a few hours when someone will pass …. [and
when] the most humane thing to do is to give the
‘unusual looking morphine injection’”
 Current health system – junior doctor 2017: “the patient
would like his future care to be directed towards his
comfort and understands that time is very short… but is
not ready to be palliated yet”
 Media – Liverpool Pathway as “assisted death pathway”,
euthanasia debate
PERCEPTIONS OF PALLIATIVE CARE
 “I guess you being here isn’t good news”
 “Is mum being made palliative now?”
 “I don’t want to take away hope”
 “This feels like giving up”
 “What happens now?”

 What DOES the involvement of palliative care – or the

adoption of the ‘palliative approach’ - mean for patients
(and their networks)?
 Over the last decade, we have begun to discover which
components of the ‘palliative approach’ seem to matter..
WHY PALLIATIVE CARE
 Wright et al 2008 examined impact of EOL discussions:
 Intrusive, scary and potentially harmful??
 Patients: accepted terminality, focused on comfort,
completed “DNR”, exposed to less aggressive intervention,
improved QOL@EOL
 Other findings:
 Patients admitted to hospice (USA): if > 1 week, improved
QOL (but not if under 1 week)
 Patients who underwent aggressive intervention: continuous
decreases in QOL
 When patients did better, caregivers also had better outcomes
in bereavement across a range of measures – “cascading
benefits”
WHY PALLIATIVE CARE
 “ Early Palliative Care for Patients with Metastatic Non-
Small Cell Lung Cancer” – Temel, JS, Greer JA et al in NEJM
August 19, 2010.
 151 patients with new dx mNSCLC randomly assigned to
standard onc vs early pall care integrated with onc
 PRIMARY OUTCOME: Change in QOL at 12 weeks
 SECONDARY OUTCOMES: Mood symptoms, quality of end-
of-life care and median survival
 RESULTS: Early PC group had better QOL, fewer patients had
depressive sx, less aggressive EOLC and longer median
survival (11.6m vs 8.9m)
 Survival advantage equivalent to first-line chemotherapy
WHY PALLIAITVE CARE
 Zhang et al 2012: examined factors important to
patients’ QOL at EOL.
 Consistent findings:
 ICU stays (NEG)
 Hospital death (NEG)
 Aggressive intervention in final weeks (CTx, feeding
tube) (NEG)
 Symptom management (POS)
 Effective honest communication (POS)
 Sense of life completion (POS)
FOOD FOR THOUGHT
 Some thought-provoking excpetions :
 “Effect of Palliative Care-Led Meetings for Families of
Patients with Chronic Critical Illness – A Randomised
Clinical Trial” Carson SS, Cox CE and Wallenstein S et al in
JAMA 2016
 Mechanically ventilated patients (7 days)
 130/256 patients in intervention arm
 184 family SDMs had 2 structured family meetings led by
PC specialist in addition to written info vs routine ICU
meetings and written info
 RESULTS: Intervention arm had more PTSD at 3 months
(p=0.0495)…..
CRITICAL MESSAGES
 Early introduction of a ‘palliative approach’ changes
outcomes for patients
 Key ingredients to success:
 Time: intervene early, late interventions don’t work in
the same way
 Trust: brief interventions of ‘expert-strangers’ can do
more harm than good
 Relationships – such as those between a GP and patient
– are ideal ground for starting the critical conversations
 START THE CONVERSATIONS
 Cascading benefits for family and community
CRITICAL MESSAGES
 Practically speaking:
 Identifying patients at risk of deterioration – eg new diagnosis,
recent hospitalisation, the “surprise question”, during changes in
circumstances
 Start a conversation about:
 What’s important to you
 What do you worry about
 Who would speak for you if one day you weren’t able
 Where is important to you
 What trade offs would you be willing to make if you were very sick
 Give information about Advance Care Directives
 Give information about the role of Specialist Palliative Care Services
 Medical details are NOT a key component of these discussions
CRITICAL MESSAGES
 So that we can avoid death in ICU or ED
 So that we can avoid “dysthanasia” – death at the
greatest possible cost with the greatest possible
suffering
 So the people can go home to die
 So that people can be surrounded by community, not
by strangers and equipment
CONCLUSIONS
 The Ideal: A peaceful death at the end of a long and
comfortable life, no business unfinished, surrounded
by an intact network of loving community
 For many this is a remote dream
 Working in partnership with our patients and their
families, starting conversations about illness, dying
and death.. we can help people to move a few steps
closer towards this outcome
 Without these conversations, we are choosing the
alternative
RESOURCES
 “Dying to talk” – Aboriginal and Torres Strait Islander
Discussion Starter
 Decision Assist (org.au)
 Atul Gawande – “How to talk end-of-life care with a
Dying Patient”… “Hope is Not a Plan”… “Being Mortal”
Bella