UTSpeaks: Your Certain DeathDr. Tim Luckett, Prof. Patricia Davidson, Prof. David Currow – 13 June 2012

Dr. Tim Luckett

Professor Patricia DavidsonDirector of Centre of Cardiovascular and Chronic Care, Faculty of Nursing, Midwifery and Health, UTS

Setting the scene

• Epidemiological transition • Technological innovation• Social change • Importance of discussion and

debate• “Difficult conversations”

6

7

8

Our certain death

• Morality, metaphysics and meaning of life• Rationality and technology• Death defying and denying society

9

• “in this world nothing can be said to be certain, except death and taxes”

10

11

• Difficulty in discussing death and dying

• punitive consequence• sense of failure• regulate death to

institutions • places little value in a dying

person• Low priority on planning

www.maricopa.edu/.../Scottsdale%20Diversity%20Presentation(2).pp...

12

Our ancient genes and modern world have collided- Kaufman

www.discoveringfossils.co.uk/royalty_free_photos_fossil_hunting_collecting.jpgNASA

Millions with Diabetes 2000 & 2030

< 30

36 - 40

31 - 35

41 - 45

46 - 50

>50

People with Diabetes(millions)

2030

2000

Segments within the totalpopulation

Costs associated with each segment

Those with no chronic conditions

Those with one chronic condition

Those with multiple chronic conditions

People ££££

72%

21%

6%

36%

31%

33%

Source: Kaiser Permanente Northern California commercial member ship, DxCG methodology, 2001.

Chronic Illness Drives Medical Care Costs

Source: Towards Managed Care - Information Exchange Event. Dr HF Macintyre17th September 2004, Effingham Park Hotel, Copthorne Accessed at http://www.natpact.nhs.uk/cms/363.php.

I´m worriedand concerned

GI symptoms bother me!

I can not bendover or exercise

My whole life is affected

Heartburn disturbs my sleep

I can not eat anddrink whatever

I like

“Not everything that counts can be counted and not everything that can be counted counts”

The role of palliative careThe evidence

Professor David Currow

Discipline, Palliative and Supportive Services,Flinders University, Adelaide,

AustraliaT h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o on t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

‘Of all the world’s wonders, which is the most wonderful?’

‘That no man, though he sees others dying all around him,

believes that he himself will die.’

Question posed to Yudhisthira in the Mahabharata

Quoted in the Introduction by Aldous Huxley inBhagavad-Gita – The Song of God

Phoenix London 1948T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

The better we are at dealing with acute illnesses, the more likely we will have explicit warning of our own deaths. An ‘expected’ death

Dy and Lynn. Br Med J 2005

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

Palliative care

The art of the possible

‘In the context of your life, what is really important in the time that you have?’

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Palliative care

1. What do people want at the end of life?

2. What do palliative care services look like?

3. What added value do palliative care services deliver?

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Palliative care

1. What do people want at the end of life?

2. What do palliative care services look like?

3. What added value do palliative care services deliver?

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Palliative care and oncology

Priorities PatientsRecently bereaved family membersDoctorsOther health care providers

Steinhauser et al. JAMA 2000;284(19):2476-2482.

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

What should we aim to achieve?

Priorities at the end of lifeKey domains

- Pain and symptom control- Preparation for death- Achieving a sense of completion- Being involved in decision preferences- Being treated as a ‘whole person’

Steinhauser et al. JAMA 2000, Singer et al. JAMA 1999.

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

What should we aim to achieve?

Patient-prioritised domains

- Maintaining a sense of humour- Not being a burden- Being mentally alert (at the cost of

other symptom control potentially)- NOT being concerned about the place of

death

Steinhauser et al. JAMA 2000. Singer et al. JAMA 1999. T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

What should we aim to achieve?

Patients

Ability to carry out one’s personal and financial affairs as one would want

McCaffrey et al J Pain Symptom Manage 2009

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Palliative careWhat is important to patients and their

families with chronic end-stage medical disease or cancer?

440 patients (77% response) / 160 caregivers (91% response); 5 centres

To have trust and confidence in their doctors (55.8%)Not to be on life support with little hope of meaningful recovery

(55.7%)Honest communication about the disease from your doctor

(44.1%)Prepare for life’s end, tasks of completion – life review, resolving

conflicts, saying goodbye (43.9%)

Heyland DK et al. CMAJ 2006;174(5):627-633

T h e s it u a t io n o f M o u n t L o f t y w a s f o u n d

f r om h e n ce a n d f r om so m e o t h er c r oss

b e ar in g s , to b e 34 ¡ 59 ' so u t h a n d 1 38¡ 4 2 '

e a st . N o la n d w as v is ib le s o f ar t o t h e

n o r th a s w h er e t h e t r e es ap p ear ed ab ov e

t h e h o r iz on , w h ich sh o w e d t h e co a s t t o

b e v er y lo w , a n d o u r so u n d in g s w e r e

f a st d ec r e a s in g .

F r om n o o n t o s ix o ' c loc k w e r a n t h ir t y

m iles t o t h e n or t h w a r d , sk ir t in g a san d y

sh o r e a t t h e d i st a n c e of f iv e , an d t h en ce

t o e ig h t m ile s; t h e d ep th w a s t h e n 5

f a t h om s , a n d w e d r op p ed t h e a n ch or u p o n

a b o t to m o f san d , m ix ed w it h p ie ces o f

d ead co r a l.

Palliative care

1. What do people want at the end of life?

2. What do palliative care services look like?

3. What added value do palliative care services deliver?

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Definitions

Supportive care

Palliative careTerminal care

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Palliative care patients

- Increasing frailty;- Increasing numbers of medications;- Deteriorating function; and- A catabolic state

At higher risk of adverse health outcomes

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Let’s debunk a few myths

Not just:- the elderly- those with cancer- those with pain- terminal care- those who are nice

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Let’s debunk a few myths

Not just:- the elderly 1/3 people referred <65- those with cancer- those with pain- terminal care- those who are nice

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Let’s debunk a few myths

Not just:- the elderly 1/3 people referred <65- those with cancer For every 2 people with cancer

another person dies an expected death

- those with pain- terminal care- those who are nice

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Palliative Care

The needs of people at the end of life are

very similar irrespective of the underlying

life-limiting illness

Luddington Int J Pall Nurs 2001;7(5):221-226.

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

Palliative CareSouth Australian Health Omnibus

Palliative care service uptake

Cancer 62%Non-cancer 40% p=0.0001

Lower income 56% Higher income 61% p=0.0006

English-speaking 58% Non-English speaking 52% p=0.0096

Age <75 53%Age ≥75 58% p=0.0717

Currow et al Pall Med 2008

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

Palliative CareSouth Australian Health Omnibus

Service provision

Access to palliative care services compared with perceived usefulness, according to the characteristicsof the person with the life-limiting illness and the survey respondent

Characteristic True positives True negatives Accuracy

Characteristics of deceased personDiagnosis: Cancer 59 (46–55) 27 (19–39) 86% Non-cancer 35 (26–44) 34 (26–46) 69%Characteristics of respondentAge <75 years 54 (43–60) 28 (21–40) 82% ≥75 years 51 (32–63) 34 (23–51) 85%Country of birth English speaking 54 (43–61) 28 (20–40) 82% Non-English sp 47 (34–60) 40 (26–55) 87%Household income <AU$60 000 pa 50 (39–57) 32 (24–43) 82% ≥AU$60 000 pa 62 (54–65) 21 (17–31) 83%Overall 54 (42–61) 29 (21–41) 83%

Currow et al Pall Med 2008

Let’s debunk a few myths

Not just:- the elderly 1/3 people referred <65- those with cancer For every 2 people with cancer

another person dies an expected death

- those with pain Fatigue takes as great a toll - terminal care - those who are nice

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Palliative Care

- Palliative care is not just about pain

- Despite widespread acknowledgement of the reasons that should generate involvement of specialist palliative care, general practitioners and cancer specialists used uncontrolled pain as the catalyst for referral in >70% of cases

Johnson CE et al. Pall Med 2008;22(1):51-57.

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

Let’s debunk a few myths

Not just:- the elderly 1/3 people referred <65- those with cancer For every 2 people with cancer

another person dies an expected death

- those with pain Fatigue takes as great a toll - terminal care We lose key opportunities for

health gains if we only see people in the last hours of life

- those who are nice

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Let’s debunk a few myths

Not just:- the elderly 1/3 people referred <65- those with cancer For every 2 people with cancer

another person dies an expected death - those with pain Fatigue takes as great a toll - terminal care We lose key opportunities for health

health gains if we only see people inthe last hours of life

- those who are nice We become more ourselves andno longer ‘prepare a face to meet the

faces’ (T.S.Eliot)

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Palliative care

1. What do people want at the end of life?

2. What do palliative care services look like?

3. What added value do palliative care services deliver?

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

The goals of palliative care

No single measure captures the nett benefits of palliative care. Given the:- complexity of needs;- differing disease trajectories; and - the multitude of family and professionals involved,it is a series of incremental benefits that accrue.

Currow et al, 2011. J Palliat Med

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

What should we aim in palliative care to achieve...

1. For patients?2. For caregivers?

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

What should we aim to achieve?

In objective or tangible ways, we need to work to optimise:

- physical function- emotional well being- spiritual / existential function- social function- financial status

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

What do we actually achieve?

Patients?

Better:- symptom control- comfort in the last two weeks of life- quality of dying- met needs- satisfaction with care

Miller et al J Am Geri Soc 2002; Miller et al JPSM 2003; Hillier et al Pall Med 2003; Teno et al JAMA 2004Currow et al J Supp Care Cancer 2008; Wallston Med Care 1988; Kane et al Lancet 1984; Hughes Hlth Svcs Res1992; Brumley et al J Pall Med 2003

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

What do we achieve?

Patient survival

8700 patients from 16 life-limiting illnesses.- lower costs for people referred to hospice- no reduction in survival compared to people receiving

usual care – trend for improved survival in 11/16

Pyenson et al JPSM 2004T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Palliative careIs there evidence that having a conversation

about end-of-life care is beneficial?

332 patient / caregiver dyads; 4.4 months before death to 6.5 months after death; 7 centres

123 had had end-of-life discussions before baseline

No more depression nor worry in those who had had these discussion

Wright AA et al. JAMA 2008;300:14:1665-1672

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

Palliative careIs there evidence that having a conversation about end-of-

life care is beneficial?

332 patient / caregiver dyads

Significantly lower rates of:- ventilation (1.6% vs 11.0%; OR 0.26 (0.08-0.83))- attempted resuscitation (0.8% vs 6.7%; OR 0.16 (0.03-0.80)- ICU admission (4.1% vs 12.4%; OR 0.35(0.14-0.90) - earlier hospice enrollment (65.6% vs 44.5%; OR 1.54;1.04-2.63)

More aggressive medical care:- Worse patient quality of life- Worse risk of major depression for the surviving caregiver

Hospice care:- Better patient quality of life; in turn associated with - Better caregiver quality of life.

Wright AA et al. JAMA 2008;300:14:1665-1672

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

What should we aim to achieve?

Caregivers while in the role and subsequently:

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Palliative Populations

South Australian Health Omnibus

1/3 people will have had someone close to them die in the last 5 years from an expected death

1/10 people will have provided care

1/30 people will have provided day-today hands-on careCurrow et al Pall Med 2004

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

What should we aim to achieve?

Caregivers while in the role and subsequently:

- Health and wellbeing (survival)- Willingness to provide care - Workforce participation

Caregivers subsequently- An ability to ‘move on’ with life

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

What do we achieve?

Caregiving is a health hazard with: - excess health service utilisation during the role; and - a significant ‘hangover’ effect of excess mortality (63% increase over controls at 2 years) when the role has ceased.

Schultz JAMA 1999 T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

What do we achieve?

Caregivers

Better spousal survival as caregivers subsequently move on with their life

Christakis Soc Sci Med 2003

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

What do we achieve?

So for people with life-limiting illnesses and the caregivers, the research we talk about today is, at times, a matter of life and death

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

What do we achieve?

Caregivers

Better: - Adjustment as they relinquish their role- Met needs- Satisfaction with care and less anxiety

Abernethy et al. J Support Care Cancer 2008; Aoun et al. Prog Pall Med 2005; Aoun Pall Med 2005.Teno et al. JAMA 2004; Hughes Hlth Svcs Res 1992Kane Lancet 1984

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Palliative Populations

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

Day-to-day hands-on caregivers fewer unmet needs (p=0.0031; 0.9 vs 2.3) The number of categories of additional supports needed during the period of the illness through to death, level of care provided, and specialized palliative care service (SPCS) involvement (p=0.0014 for the interaction oflevel of care and SPCS). Numbers are least squares means of the number of extra support needs identified by respondents. Vertical bars represent 95% confidence intervals

Abernethy et al. J Supp Care Cancer 2008

Unmet needs for caregivers at the end of life

Key Unmet Needs of Bereaved

05

1015

20253035

MEDIC

AL

INFORM

ATION

PERSONAL

FINANCIA

L

OTH

ER

Key Needs

Per

cen

tag

e Hands on Daily

Intermittent

Rare Care

No Care

Palliative Populations

• For day-to-day hands on caregivers, use of palliative care services led to decreased unmet emotional needs

– Overall, 32.0% of daily ‘hands on’ caregivers reported unmet emotional needs

– But, if they accessed SPCS, this figured dropped to 14.3% (p<0.05)

Palliative Populations

• For intermittent hands-on caregivers, use of palliative care services led to decreased need for physical support of the dying

– Overall, 25.0% of intermittent caregivers identified physical support as an unmet need

– But, with the use of SPCS, this dropped to 14.4% (p<0.01)

Palliative Populations

South Australian Health Omnibus

Caregivers

Is there an association between a person’s ability to ‘move on’ with their life and use of palliative care services?Prigerson et al Am J Psych 1996

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

What should we aim to achieve?Relationship between time and the ability to ‘move on’ with life for those with and without involvement from a specialised palliative-care service (SPCS). Chi-square tests were used at each time point (likelihood of moving on by use of service). Overall, 86% vs 77%; p = 0.00

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

What should we aim to achieve?Relationship between time and the ability to ‘move on’ with life for those with and without involvement from a specialised palliative-care service (SPCS). Chi-square tests were used at each time point (likelihood of moving on by use of service). Overall, 86% vs 77%; p = 0.00

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

What should we aim to achieve?Relationship between time and the ability to ‘move on’ with life for those with and without involvement from a specialised palliative-care service (SPCS). Chi-square tests were used at each time point (likelihood of moving on by use of service). Overall, 86% vs 77%; p = 0.00

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Palliative Populations

South Australian Health Omnibus

Caregivers

Are there people who would not provide care again?

Currow et al. J Pain Symptom Manage 2010T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

Palliative Populations

South Australian Health Omnibus

Caregivers

7.4% of hands-on caregivers would not want to provide that care again. A further 16.5% would ‘probably’ care again.

Currow et al. J Pain Symptom Manage 2010

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

Palliative care

Palliative care as a social good

compared with

Palliative care as a health service that delivers improved health outcomes for:- patients; and- caregivers.

T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear in g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h e r e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ich s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r a n t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor a l.

Clark D et al. J Pain Symptom Manage 2007;33(5):542-546.

Humanity is the place where those without words, without resources, without dignity, and even without hope find a voice and presence.

David Roy 1988T h e s it u a t io n o f M o u n t L o f t y w as f ou n d

f r om h e n ce a n d f r om s o m e o t h er c r os s

b ear i n g s , to b e 34 ¡ 5 9 ' so u t h a n d 138¡ 4 2 '

e ast . N o lan d w as v is ib le s o f ar to th e

n or th a s w h er e th e t re es ap p ea red ab ov e

t h e h o r iz on , w h ic h s h o w e d t h e co a s t t o

b e v e r y lo w , an d ou r s o u n d in g s w er e

f ast d ec r ea s in g .

F r o m n o o n t o six o ' c loc k w e r an t h ir t y

m iles t o t h e n o r t h w a rd , sk ir t in g a san d y

sh o re a t t h e d i st a n c e of f iv e , a n d t h en ce

t o e ig h t m iles; th e d e p t h w as th en 5

f a t h om s , a n d w e d r o p p ed t h e a n c h or u p o n

a b o t t o m o f san d , m ix ed w it h p ieces o f

d ea d cor al.

UTSpeaks: Your Certain DeathDr. Tim Luckett, Prof. Patricia Davidson, Prof. David Currow – 13 June 2012