Solving the End of Life Care Equation

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 Individual s Wishes 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) Doctor s Instructions Clinical Plans clinical decisions/instructions regarding resuscitation/eol written by the doctor responsible e.g. NFR orders, Resuscitation Plans, 7 Step Pathway Clinical Team Plan Palliative Care Plans/Pathways holistic palliative care treatment plan developed after a decision to pursue palliative care e.g. Liverpool Care Pathway 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

A The End Of Life Care Equation 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 Equals Access to palliative care - generalist and specialist Equals X X 8

Advance Care Directives Act 2013: Simplification into one form Consent Act Medical Power of Attorney Anticipatory Direction Guardianship Act Enduring Power of Guardian Advance Care Directives Act One Advance Care Directive Form One form to rule them all.. 9

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 itdoctors, 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