Sue Hanson National Director Clinical Services

Little Company of Mary Health Care

Co-Chair NSW ACI Palliative Care Network

What does „ACP‟ actually mean?

Why do we need to change our thinking about ACP?

How can we improve peoples experience in the last year of life?

Advance Care Planning in the Community

Depends - confusing terminology:

Advance Care Planning

Advance Care Directives

Medical Orders for Life Sustaining Treatment

Advanced Resuscitation Plans - NFR

Goals of Care

What is Advance Care Planning anyway?

144,000 people will die in Australia each year

expected to increase to 320,000 by 2056

75% of deaths can be „expected‟

51% of all deaths in those aged 80+1

400% increase in those aged 85+

88% of those aged 65+ have 3 or more chronic illnesses 3

88% of residents leave RACF due to death4 17% had stayed less than 3 months

Further 19% between 3-12 months before death

What we know about dying

5

We understand a lot more about EOL …

Journey A Cancer

20%

Journey B Chronic Illness

25%

Journey C Dementia/Frailty

40%

In 2011-12 people in the last year of life consumed

nearly a million bed days in NSW- nearly 10% of all

bed days

Accounted for nearly $1Billion in inpatient costs

Forecast threefold increase in real healthcare and residential expenditure over thirty year period -

$85.06b (02/03) to $246.06b (2032/33)

2.3% of privately insured use 1/3rd of all hospital benefits

Costs in the Last Year of Life

Where do we die?

More than 50% of people will die in hospital

16% will die in a RACF

Less than 20% will be able to remain at home

70% of people when surveyed would choose to remain at home

Forty-nine per cent of patients were recognised as dying 24

hours or less before death

17% between 24 and 36 hours before death,

21% between 36 and 72 hours before death, and

13% greater than 72 hours before death Journal Clinical Medicine, 2009

Healthcare workers feel obliged to deliver care if no ACD exists

ACSQHC Consensus statement

Concerns about euthanasia

Too little - too late?

HOSPITAL

GENERAL

PRACTITIONER

REFERRING SPECIALIST

COMMUNITY NURSING/ ALLIED HEALTH

Patient Journey Last Year of Life - current

Admissions

ICU

AGED CARE

Icons © NEHTA 2013

Spec Palliative Care

EMERGENCY DEPT

• Gateways concept

• Goals of care

• Made in the context of an already experienced burden

• Ongoing assessment – preventing suffering/promoting healing

• Linked to person goals-based medical care - MOLST

A better model?

Developing a systems approach

Diagnosis

Chronic

Illness

Gateway 1

EOL

Gateway 2

Imminent Dying Death

Transition Points

Years 12 months 48-72 hours Death

Patient journey approaching the end of life

Gateway 2: The focus of current system

Dx

Gateway 1

EOL

Gateway 2

Imminent Dying Death

Transition Points

Years 12 months 48-72 hours Death

Gateway 1: Redesigning better care

Dx

Gateway 1

EOL

Gateway 2

Imminent Dying Death

Transition Points

Years 12 months 48-72 hours Death

Shift away from „hit by a bus‟ thinking

Shift from thinking about THE conversation

Shift from late to early conversations

Shift to thinking about care planning

Facilitate person-centred care

Document values, beliefs and goals

Identify substitute decision-maker for loss of decision-making capacity

Progressive, ongoing structured conversation that aligns to patient journey

Shifting our thinking

Initiate routine discussions about care

Explore understanding of disease progression

Search out values of „living well‟

Clarify statements the person makes

Discover the meaning of their experience

Explore barriers to advance care planning

Assist in selection of proxy

Advocate for and communicate persons wishes

Core ACP Skills

Initiate Routine Discussion

It‟s never too early to plant a seed

Begin discussion at regular intervals e.g. home visits, clinics, care conferences

Provide basic information first, then add more discussion over time

Incorporate as a component of good patient care (“We’re trying to begin these talks with all of our patients”)

Care in the last Year of Life

Person you would not be surprised died in the next 12 months, e.g. sentinel event, low serum albumin

Frequent hospitalizations

Declining functional status

Verbal cues e.g. “I‟m not sure all of this is worth it to me anymore”

Building new models of care that support people to have

real choices at the end of life rely on some basic principles:

Put patients, their families and carers at the centre

Including people as partners in care

Focus on quality of life and care

Deliver care as close to home as possible

Thank you

In conclusion