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Advance Care Planning and Goals of Care at
Royal Melbourne Hospital
Rohit D’Costa: ICU Specialist and State Medical Director for Donatelife Victoria
Jo Slee: Advance Care Planning Project Officer, Royal Melbourne Hospital
Overview
• Advance Care Planning at RMH
– Background
– Advance Care Planning in 3 Steps
• Goals of Care
– Background
– Implementation and evaluation
• A process of planning for future health
care and personal care needs
• A person’s values, beliefs and preferences
are made known
• A guide for future decision-making, if the
person cannot speak for themselves
Advance Care Planning
• People live longer with chronic illness
• 54% of deaths occur in hospital despite a majority of people expressing a desire to die at home
• Up to 50% of deaths are clinically expected
• People are often unable to speak for themselves when medical decisions need to be made
• Few families have discussed end of life issues in-depth
• Many patients receive care that is inappropriate or
futile at the end of their life
Why is ACP so important?
AIHW 2012, ABS 2012, Bloomer et al 2010, Scott et al 2013, Swerissen and Duckett 2014
• Improved medical care
• Improved end of life care
• Improved patient and family satisfaction
• Less stress, anxiety and depression in the surviving
relatives
• Potential improvement in staff well being
• May act as a catalyst to improve communication
between cultures
• Reduce inappropriate transfers from residential aged
care facilities (RACF) to hospital
Benefits
Detering et al 2010, Riggs et al 2004, Caplan 2006, Sudore and Fried 2010
Providing opportunities for
Advance Care Planning
is now an expectation
• National Safety and Quality Health Service
Standards (NQHSS)
• Federal Government – National Framework
• Victorian Department of Health
– ACP Strategy 2014-18
– Statement of Priorities
EQuIPNational – Advance Care Planning
Standard 1 – Governance for Safety and Quality in Health Service Organisations
1.18 Implementing processes to enable partnerships
with patients in decisions about their care, including
informed consent to treatment
1.18.1 Patients and carers are partners in the
planning for their treatment
1.18.4 Patients and carers are supported to
document clear advance care directives and/or
treatment-limiting orders
Standard 9 – Recognising & Responding to Clinical Deterioration in Acute Health Care
9.8 Ensuring that information about advance care
plans and treatment limiting orders is in the patient
clinical record, where appropriate
9.8.1 A system is in place for preparing and/or
receiving advance care plans in partnership with
patients, families and carers
9.8.2 Advance care plans and other treatment-
limiting orders are documented in the patient clinical
record
Standard 12 – Provision of Care
Criterion 4 The care of dying and deceased
consumers / patients is managed with dignity and
comfort, and family and carers are supported
Advance Care Planning and treatment limiting
orders are included in:
• organisation- wide policies/procedures and
systems for end of life care
• ongoing professional development for staff
AIMS • Promote ACP in the community
• Standardised approach/lexicon
• Increase transferability of ACP
across Australian states
• ACP a routine part of care
• Health care consistent with
patient’s expressed values and
preferred outcomes
Advance care planning: have the
conversation. A strategy for Victorian
health services 2014-2018
Four priority action areas: 1. Establishing robust systems so that
organisations can have the conversation.
2. Ensuring an evidence-based and quality
approach to having the conversation.
3. Increasing workforce capability to have the
conversation.
4. Enabling the person being cared for to have
the conversation.
Department of Health and Human Services (DHHS) Victoria
Facilitating advance care planning across the health and disease spectrum
Who can have an ACP?
• Anyone over the age of 18
• Particularly relevant for some patient groups
– People with life-limiting conditions
– Older people admitted to hospital with an acute
medical or surgical condition
– Anyone for whom you would answer “No” to
“Would I be surprised if this person died within 12 months?”
Cancer COPD Cirrhosis CCF CKD Dementia and other
Neurodegenerative disorders
Source http://www.cmaj.ca/content/early/2013/07/15/cmaj.121274.extract#
ADVANCE CARE PLANNING IN 3 STEPS
Appoint an agent
Communicate your wishes
Put it on Paper
APPOINT AN AGENT
Appoint an Agent
The competent patient can:
• Consent to or refuse treatment
For the non-competent patient:
• an Enduring Power of Attorney –
Medical Treatment (MEPOA) can
consent to or refuse treatment on the
patient’s behalf
OR
• The Person Responsible can consent
to treatment on the patient’s behalf
*Ask patients if they have a Medical Enduring
Power of Attorney and make sure this is
clearly documented in their medical history
COMMUNICATE YOUR WISHES
Communicate your wishes
*Encourage the patient to speak with their
Substitute Decision Maker, family and
health care team about
• Their values and beliefs
• Future situations they would find
unacceptable or too burdensome
in relation to their health
• Specific treatments that they have
said they would NOT want
considered
• Who they said they would like to
be involved in medical decisions
• Their current and future health care
needs
PUT IT ON PAPER
Put it on Paper
*Ask if the patient has written down their
wishes and ask to see the document/s.
This may include:
• Refusal of Treatment Certificate
Legally binding
• Letter or Statement of Choices
Consider if:
• Intentions are clear
• Written wishes still current
• Apply to current situation
• Freely written
*Document your discussions in on Record of
Advance Care Planning Discussions form
RMH Statement of Choices
Refusal of
Treatment
Certificate
Record of
Advance Care
Planning
Discussions
Advance Care Planning
Patient Information
Translated into
- Arabic
- Traditional Chinese
- Greek
- Italian
- Turkish
- Vietnamese
Available MH Intranet and
RMH internet
GOALS OF CARE
Voltaire (1694-1778)
“The role of the
physician is to
amuse the patient
whilst nature takes
its course”
What to offer?
• Availability of therapies
• Efficacy
– No requirement to offer futile treatment
• Risks/Burdens to patient
• Cost
• Patient expectations and desires
• Family expectations and desires
– Patient/Family cannot demand treatments
Goals of Care vs LOMT
LOMT form satisfactory but…
• Ad hoc process
• Patient and family complaints
• Only small proportion of patients with LOMT forms (?Appropriate)
• No where to document in the form a curative approach (assumed)
• ‘LOMT’ confusion with ‘Palliation’
Goals of Care
Brings together:
Person Centred Care
Advance Care Planning
Raising awareness
Implementing prior-planning
Shared decision-making for potential clinical
deterioration
Medical Treatment Goals
Emergency Treatment Escalation (CPR/MET)
CPR/NFR decision-making
Heyland, D., et al., Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Internal Medicine, 2013. 173(9): p. 778-787.
Patient preferences Vs
prescribed goals of care
Audit showed only 30% agreement between patients’ expressed
preferences for end of life care and documentation in the medical record.
Patients tended to express a preference for less aggressive care than that
prescribed. Similar results for substitute decision-makers.
1 = no treatment limitations; 2 = no CPR; 3 = comfort measures; 4 = mix of options e.g. try to fix
problems but move to comfort care if not getting better; 5 = unsure
International experience with GOC
• United States
– Physician Orders for Life sustaining
treatment paradigm (POLST)
• United Kingdom
– Universal Form of Treatment Options
POLST
• USA
– State specific
– Legal standing
– For patients where
death would not be
unexpected in the
next year
Fritz Z, Malyon A, Frankau JM, Parker RA, Cohn S, et al. (2013) The Universal Form of Treatment Options (UFTO) as an Alternative
to Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Orders: A Mixed Methods Evaluation of the Effects on Clinical
Practice and Patient Care. PLoS ONE 8(9): e70977. doi:10.1371/journal.pone.0070977
http://127.0.0.1:8081/plosone/article?id=info:doi/10.1371/journal.pone.0070977
UF
TO
UFTO
“Control” Period
(DNACPR)
Introduction of UFTO and embedding
UFTO evaluation
Fritz Z, Malyon A, Frankau JM, Parker RA, Cohn S, et al. (2013) The Universal Form of Treatment Options (UFTO) as an Alternative
to Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Orders: A Mixed Methods Evaluation of the Effects on Clinical
Practice and Patient Care. PLoS ONE 8(9): e70977. doi:10.1371/journal.pone.0070977
http://127.0.0.1:8081/plosone/article?id=info:doi/10.1371/journal.pone.0070977
Reduction of harms identified on
Global Trigger Tool (GTT)
Table 6. The frequency of each type of harm for trigger categories within UFTO and DNACPR
groups.
Fritz Z, Malyon A, Frankau JM, Parker RA, Cohn S, et al. (2013) The Universal Form of Treatment Options (UFTO) as an Alternative
to Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Orders: A Mixed Methods Evaluation of the Effects on Clinical
Practice and Patient Care. PLoS ONE 8(9): e70977. doi:10.1371/journal.pone.0070977
http://127.0.0.1:8081/plosone/article?id=info:doi/10.1371/journal.pone.0070977
Australian experience
Royal Hobart
Form introduced 2011
• 6 month post implementation
audit
– 75% completion in Assessment
+ Planning Unit vs 34% NFR
completion 2 years prior to
form
•18 month 1-day Point prevalence
– 52% of in-patients (85% of
medical patients)
– All patients who died had a
form completed
The Northern Hospital
Form introduced 2012
• Increase in limitations being in
place prior to MET
(Nov 12 – Jun 14)
– Surgical patients: 8.2% to 20.7%
– Medical patients: 38.1% to 69.4%
• Fewer limitations initiated by MET
in medical patients:
– 3.4% vs 13.1%
Thomas R et al. MJA 2014 201 (8): 452-455 Dr B Hayes, personal communication 2014
Goals of Care
Step 1 and 2
• Identifies: the Agent/Person Responsible;
people involved in the decision; and any
previous advance care planning.
Goals of Care
A. Curative (for CPR and all life sustaining
treatments)
B. Curative or restorative but treatment
limitations apply
C. Primarily non burdensome treatment
and symptom management
D. Comfort during dying – terminal care
Step 4
• Decisions to limit treatment should be
discussed with Consultant responsible for the
patient (or their delegate)
GOC – uncertain goals
• If there is uncertainty, treatment goals should
default to a higher Goal of Care category.
Either:
i. ‘Category A. Goal of care is curative or
restorative - No limitation of treatment’
OR
ii. A Goal of Care Category that only has limits to
treatment that can be determined confidently
despite the patient’s uncertain clinical condition
Review / revise as more information becomes available
Medical treatment goals based on -
…then within those constraints
…leading to
i. A medical assessment and a medical
decision about what is possible
ii. A shared decision-making discussion between
clinician
and patient and/or Person Responsible
An agreed medical treatment plan including:
- Overall medical treatment goals and
- Specific emergency medical treatments/limitations
Implementation
• GOC form completed for all patients admitted to
RMH
– Within 24-48 hrs of admission
• An accessible summary of the agreed medical
goals of care
• Pro-active decision:
– general guidance about the ‘big-picture’ and medical
treatment that is appropriate
– specific instructions about CPR, Respond Blue and
MET Calls
Evaluation and monitoring
• Post-implementation audit – point in time, by ward
– Proportion of patients who have GOC form in file
• Proportion of forms fully/correctly completed
• Repeat audit of consecutive deaths
– Compare with 2011 LOMT data
• MET Call data available from Riskman
– Pre- and post-implementation of Goals of Care
• Treatment limitations initiated at MET call
• Length of stay prior to MET Call
• Australian Health Minister’s Advisory Council. A National Framework for Advance Care Directives.
Sept 2011 http://www.health.gov.au/internet/main/publishing.nsf/content/acp
• Advance Care Planning in 3 Steps (Copyright Northern Health 2009)
• Brimblecombe, C., et al., The Goals of Patient Care project: implementing a proactive approach to
patient-centred decision making. Internal Medicine Journal, 2014. 44(10): p. 961-966.
• Department of Health and Human Services. Advance care planning - have the conversation: A strategy
for Victorian health services 2014-2018 http://www.health.vic.gov.au/acp/strategy.htm
• Department of Health and Human Services. Frequently Asked Questions on Advance Care Planning.
http://www.health.vic.gov.au/acp/faq.htm
• Fritz, Z., et al., The Universal Form of Treatment Options (UFTO) as an Alternative to Do Not Attempt
Cardiopulmonary Resuscitation (DNACPR) Orders: A Mixed Methods Evaluation of the Effects on
Clinical Practice and Patient Care. PLoS ONE, 2013. 8(9): p. e70977.
• Heyland, D., et al., Failure to engage hospitalized elderly patients and their families in advance care
planning. JAMA Internal Medicine, 2013. 173(9): p. 778-787.
• Victorian Quality Council. The Next Steps Conversations on end of life.
http://docs2.health.vic.gov.au/docs/doc/The-Next-Steps:-Having-Conversations-on-Life-and-Death--
Education-and-Training-Manual-February-2012
• Swerissen H and Duckett S, 2014, Dying Well. Grattan Institute ISBN: 978-1-925015-61-4
http://grattan.edu.au/wp-content/uploads/2014/09/815-dying-well.pdf
References