Real World Review of ACP in

those who lack decision

making capacity

Real world ACP – Some background

The Challenges

Law is complex

Legally binding documents are confusing and lengthy

Completed documents : no consistency with location

Differences across Australia

State/Territory Guardianship Power of Attorney

Queensland Guardianship and Administration

Act 2000

Powers of Attorney Act 1998

New South Wales Guardianship Act 1987 Powers of Attorney Act 2003

Victoria Guardianship and Administration

Act 1986

Powers of Attorney Act 2014

Western Australia Guardianship and Administration

Act 1990

Powers of Attorney Act 1990

South Australia Guardianship and Administration

Act 1993

Powers of Attorney and Agency Act 1984

Australian Capital Territory Guardianship and Management of

Property Act 1991

Powers of Attorney Act 2006

Western Australia Guardianship and Administration

Act 1990

Powers of Attorney Act 1990

Northern Territory Adult Guardianship Act Powers of Attorney Act; Advance

Personal Planning Act 2014

Tasmania Guardianship and Administration

Act 1995

Powers of Attorney Act 2000

Decision Making Order of priority• Advance Health Directive

• QCAT / VCAT / NCAT etc (formally appointed guardian)

• Enduring Power of Attorney

• Substitute Decision Maker (Statutory Health Attorney / Person Responsible / Health

Attorney)

• Public Guardian

Formally appointed guardianRelevant tribunal (eg QCAT / VCAT / NCAT) can appoint guardian if:

•the adult has impaired decision making capacity

•there is a need for a decision, and

•a decision maker is needed to ensure that the adult’s needs are met

and their interests are protected.

Substitute Decision Maker (not formally appointed)

Queensland – Statutory health attorney

New South Wales – Person responsible

Victoria – Person Responsible

South Australia – Person Responsible

Tasmania – Person Responsible

Western Australia – Person Responsible

ACT – Health attorney

Challenges cont’d

Medicine has a mostly curative focus

Medicine often views death as failure

The issue of “good medical practice”? “What if we get it wrong?”

Desires of individuals versus the ability to provide wishes

Transfer of patients to hospital at end of life

Challenges …. Cont’d

Outcomes of CPR

Unpredictability of death

Society doesn’t talk about death

People plan for other significant events but not death

Combine this with…

Aging population

Increase in people living with dementia

Increase in chronic disease

Low uptake of documents

Erratic storage of documents

People living with dementia Source : Alzheimer's Australia

Table i: Dementia prevalence estimates and projections by state and territory and nationally, 2011-2050 2011 2012 2015 2020 2030 2040 2050 NSW 91,038 95,028 107,037 128,238 182,331 248,139 303,673 VIC 68,397 71,544 81,117 98,123 141,161 195,459 245,813 QLD 48,674 51,005 58,509 73,470 114,800 166,032 215,272 SA 23,710 24,627 27,353 32,062 44,236 59,053 69,620 WA 23,931 25,177 29,041 36,500 46,332 57,781 68,708 TAS 6,732 7,003 7,818 9,362 13,544 18,043 20,653 NT* 838 878 1,049 1,473 2,700 3,992 4,916 ACT 3,254 3,445 4,040 5,167 8,181 11,632 13,970 AUST 266,574 278,707 315,963 384,396 553,285 760,131 942,624

State 2011 2012 2015 2020 2030 2040 2050 Av % ↑ per

decade

NSW 91,038 95,028 107,037 128,238 182,331 248,139 303,673 35.38%

VIC 68,397 71,544 81,117 98,123 141,161 195,459 245,813 37.89%

QLD 48,674 51,005 58,509 73,470 114,800 166,032 215,272 45.37%

SA 23,710 24,627 27,353 32,062 44,236 59,053 69,620 31.15%

WA 23,931 25,177 29,041 36,500 46,332 57,781 68,708 30.77%

TAS 6,732 7,003 7,818 9,362 13,544 18,043 20,653 32.86%

NT* 838 878 1,049 1,473 2,700 3,992 4,916 57.52%

ACT 3,254 3,445 4,040 5,167 8,181 11,632 13,970 44.85%

AUST 266,574 278,707 315,963 384,396 553,285 760,131 942,624

37.38%

Source: Deloitte Access Economics

calculations

* Note that NT figures are likely to

significantly underestimate the true

prevalence of dementia

Solution

MSHHS development of ACP Forms –

Statement of Choices

Based on Respecting Patient Choices

Form A

Form B

Staff employed and trained on RPC

Implementation in hospitals, community and RACFs

Process

Education of staff and community groups

Information to GPs, RACFs, QAS and OPG

Identify Patients – mainly medical

Discussions with patients and families

Completion progressed through GP

Including SW, pre-AC, renal, cancer care

Aims

“To raise the awareness of ACP”

“To make Advance Care Planning everyone’s business”

“To enable the values and choices of each individual to be

incorporated in their health care”

Education

Intern training

“When it comes to dying, doctors, of course, are ultimately

no different from the rest of us. And their emotional and

physical struggles are surely every bit as wrenching. But

they have a clear advantage over many of us. They’ve

seen death up close. They understand their choices, and

they have access to the best that medicine has to offer.”

So what do they choose?” John Hopkins Hospital

Do medical staff have an advantage?

“Yes”…….. because

More aware of disease process/more realistic expectations

More informed of options

Understand limitations of treatments

Have been exposed to death and dying

Therefore more likely to discuss with family

Plan earlier

Complexity increases

Capacity

Recency / specificity

Consent

Signs of capacity

• Understand the nature, risks and consequences

of their decision;

• Freely and voluntarily make decisions about the

matter

• Communicate the decision in some way

What we need to remember

Different opinions to you is not a lack of capacity

Lack of understanding of minimal information is not lack of

capacity

Capacity is fluid and so person must be involved

ASK ME

Assess strengths and deficits;

Simplify the task;

Know the person;

Maximise the ability to understand; and

Enable participation.

Form B

Real need for those who lack decision making

capacity

Can no longer complete other documents

Completed SoCs (MSHHS)

Community Hospital RACF Totals

Form A 160 88% 316 70% 87 26% 563 59%

Form B 21 12% 135 30% 242 74% 398 41%

Total 181 100% 451 100% 329 100% 961 100%

MNHHS

75% Form A

25% Form B

A few GPs and RACFs – mainly Form Bs

Without ACP?

Dot's Story

Impacts family

Impacts staff

Impacts patients

What impact does it make

Rich conversations with person involved

Families talk

A stranger gets to know the individual

Families feel they can “do” something eg

create playlist, advocate

Values guide decisions

Stories from the people

Benefits / feedback for person

Their values and wishes can be known

Who they are is respected

Allows them to live well until they die (well)

Benefits / feedback for family

Family members express gratitude that others

acknowledge how important their loved one is

Easier to discuss values first

Takes the burden off family

Richness amidst painful thoughts

Reminds family of the life of the individual

Assists with grief and guilt

Benefits / feedback for staff

RACFs/GPs embrace it – they recognise the

need

Assists clinical staff in making “tough”

decisions

Providing holistic care as they learn more

about the person

Admin staff responses

How values/decisions change

Become more focused over time, but rarely change

Those who are very clear against resuscitation remain so

If anything, medical decisions change from “do” to “don’t”

Focus narrows to the senses……

What Really Matters at the End of Life