Solving the End of Life Care Equation

Using logic in developing a coherent overall strategy for end of life decision-making and care in South Australia

1

Questions: Why does the community seem unhappy with the way our health system treats them at the end of life?

• Major area of disputes, complaints and media attention

DESPITE

• Significant health expenditure

• 50% die in acute care hospitals

• 30% of Medicare expenditure (US) is for patients in last year of life- 40% in last month of life

2

Maybe, these are symptoms and signs of a community which perceives that the health system:

• Does not listen to or respect their wishes

> Problem with Decision Making Processes

• Abandons them at the end, and allows them to suffer

> Problem with Care Provision

3

How do I make a decision?

Phew!……..…..…..I made a decision………......….Did I forget something? 4

So, we’ve got it wrong up until now. How do we fix it?

………….we need to think this out logically

5

We need to talk the same language first

Advance Care Directives (ACDs)

• legal documents linked to a specific set of laws

• e.g. Advance Care Directive Form (ACD Act 2013), AD, MPA or EG

Advance Care Plans (ACPs)

• “informal” documents with some legal weight within common law regarding refusal of treatment

• e.g. Good Palliative Care Plan, Statement of Choices (RPC)

Clinical Plans

• clinical decisions/instructions regarding resuscitation/EOL written by the doctor responsible

• e.g. “NFR”orders, Resuscitation Plans, 7 Step Pathway

Palliative Care Plans/Pathways

• holistic palliative care treatment plan developed after a decision to pursue palliative care

• e.g. Liverpool Care Pathway

Individual’sWishes

Doctor’s Instructions

Clinical Team Plan

6

If this problem was an equation, what is the answer that you would want?

Decision-making and Care which:

1) Respects a dying individual’s wishes- legally, ethically and compassionately so that we do not abandon them

2) Reduces care which is of no benefit to them e.g. hospital, resuscitation and ICU

= X

7

The End Of Life Care Equation

A A standardised form for individuals to document their wishes,

backed by good law – e.g. ACD Form and Act

+ +

B A way of converting these wishes into clinically useful instructions

– e.g. ACP or 7-Step Pathway Clinical Plan

+ +

C A system of getting this information to the point of care when it

is required – i.e. Paper or Electronic Health Record

+ +

D Access to palliative care - generalist and specialist

Equals Equals

X X 8

9

Consent Act

•Medical Power of Attorney

•Anticipatory Direction

Guardianship Act

•Enduring Power of Guardian

Advance Care

Directives Act

Advance Care Directives Act 2013: Simplification into one form

One Advance

Care Directive

Form

One form to rule them all…………………………………..

But what is the real impact of the Advance Care Directives Act 2013 and Changes to Consenting on the way the health system relates to patients at end of life?

Better law because it emphasises patient autonomy, but balanced with protections that align with good practice……………..

10

Certainty regarding:

1. What patient autonomy is: Overriding principle: everyone- SDMs, Persons Responsible

and Health Practitioners must act as if “in the patient’s shoes”

2. Pathway to apply patient autonomy: Single form- single set of legal rules- clear legal hierarchy

regarding consent

3. Protection in acting against binding refusals in an emergency/uncertain/urgent situations

4. No requirement to provide, and the ability to withdraw, treatment which is not of benefit to a patient

11

A Doctor’s Professional Standards: AHPRA Medical Board of Australia Good Medical Practice: A Code of Conduct for Doctors in Australia (March 2014)

12

THE 2010 END OF LIFE DECISION MAKING PROJECT Are ACDs and ACPs the only solution?

• often completed a long time before a medical crisis- may not be relevant

• often only vague statements about wishes- limited use in

emergencies

• may be pointless if not converted into clinically useful instructions about resuscitation and care

• 90% of patients presenting don’t one So, relying solely upon ACDs and ACPs is a common, but fundamentally flawed strategy and has led to……………………… 13

The Public Advocate’s letter to the Project Working Group:

Complaints from patients and families:

Informal “Not for Cardiopulmonary Resuscitation” and “NFR” orders written in notes and discharge letters without any prior discussion with the patient, family or substitutes.

14

This led to:

A solution:

ACDs (or ACPs) to tell us the patient wishes

plus

Clinical/Resuscitation Plans to convert these wishes into usable clinical instructions about resuscitation and end of life care

…………………….One form for the patient, one form for the doctor

15

We can do better:

Make end of life Clinical/Resuscitation Planning: • not just a form, but a process • of logical and commonsense steps for doctors to work through

..............................The 7 Step Pathway

16

The 7 Step Pathway Trigger

V Assessment

V Consultation

V Develop and Document the Clinical Plan

V Transparency

V Implementation

V Support the Patient and Family

17

7 Step Pathway- Resuscitation Alert

18

The Form

• Incorporates the 7 Steps • Encourages clinician to work through the correct: clinical legal ethical steps in the correct order

• Protects both patient and doctor • Instils an intuitive feel, or “cadence” to process

• MUST ask: “What are you going to do to maintain the patient’s comfort and dignity?”

• Standardised document- everyone recognises and respects it- doctors, nurses, ambulance officers, aged care staff

19

Another time, Another place……………………. Need to get:

• Patient’s wishes (ACD)

• Clinical instructions- resuscitation and EOL care (7 Step Pathway)

>To the point of care if the patient deteriorates/emergency

So that other doctors, nurses, ambulance officers can respond correctly

Options:

• Paper/folder systems

• Electronic Health Record- EPAS/PCEHR

20

Palliative Care

• Generalist vs Specialist

• Education/Training

• Funding

• Model of care: • Single entry point and responsive • Transparency and equity • Capacity building with partnerships • Navigable with care coordination • Patient’s and families need to see a “team” at their time of

need

21

The End Of Life Care Equation

A A standardised form for individuals to document their wishes,

backed by good law – e.g. ACD Form and Act

+ +

B A way of converting these wishes into clinically useful instructions

– e.g. ACP or 7-Step Pathway Clinical Plan

+ +

C A system of getting this information to the point of care when it

is required – i.e. Paper or Electronic Health Record

+ +

D Access to palliative care - generalist and specialist

Equals Equals

X X 22