End of Life Care: Leadership and Quality in End of Life Care in Australia

End
of
Life
care.
Leadership and quality in
end of life care in Australia
Round table recommendations
February 2013
Dr Zoe Keon-Cohen
Monash University, Melbourne
Steering Committee:
Dr Zoe Keon-Cohen Specialist Anaesthetist, Research Fellow
Professor John McNeil, AM Head of Department of Epidemiology & Preventive Medicine
Head of School of Public Health & Preventive Medicine
Mr. Neill Batt AO Australian Centre for Health Research, Melbourne
Professor Paul S. Myles Chair, Dept of Anaesthesia and Perioperative Medicine,
Alfred Hospital and Monash University, Melbourne
Professor William Silvester Director
Respecting Patient Choices, The Austin Hospital
Heidelberg, Victoria
Professor Peter Brooks, AM School of Population and Global Health,
University of Melbourne
Participants:
Mr Rod Young CEO Aged Care Association Australia
Dr Paul Bates CMO Bupa
Professor Jeffery Zajac Physician Austin Health, Melbourne Brain Centre.
Ms Carol Bennett CEO Consumer Health Forum
Ms Bernadette Tobin Director Plunkett Centre for Ethics, St Vincents Hospital Sydney
Professor Geoff Mitchell General Practice and Palliative Care, University of Queensland
Dr. Brendan Murphy CEO Austin Health
Professor Richard Larkins, AO Chair EMBL Australia
Mr Mark Valena General Manager GMHBA
Mr Alan Castleman Chairman Australian Centre for Health Research
A/ Professor Justin Oakley Monash Deputy Director Centre Human Bioethics
A/ Professor Dominic Wilkinson A/Professor of Neonatal Medicine and Bioethics,
University of Adelaide
Professor Ben White Director, Health Law Research Centre, Faculty of Law,
Queensland University of Technology
Mr Stephen Parnis Vice President AMA
Professor Rinaldo Bellomo ICU Consultant Austin Health
Professor Russell Gruen Director of Surgery and Public Health, Alfred Health
A/Professor Peter Hunter Director of Sub-acute Medical Services, Division of Rehabilitation,
Aged and Community Care, Alfred Health
Professor Patsy Yates Queensland University of Technology
Ian Maddocks AO Emeritus Professor Palliative Care Flinders University
Professor David Story Academic Chair Anaesthesia, Melbourne University
Leadership and quality in end of life care Australia:
Round table recommendations
Melbourne February 27th 2013
ACHR Paper
Leadership and quality in end of life care Australia: Round table recommendations
February 2013
ISBN: 978-0-9923743-1-0
Contents
2 INTRODUCTION
4 EXECUTIVE SUMMARY
7 THE PROBLEM AND THE CASE FOR CHANGE
7 The aging population and burden of disease
8 Culture within the medical profession
8 Administrative challenges amongst health care systems
9 The vision: Potential benets with improved end of life care
10 THE WAY AHEAD: Recommendations of the Round Table
10 1. Advance care planning
12 2. Education and role of medical professionals
14 3. Health care resources, policies and support structures
16 RISKS AND CONCERNS WITH IMPLEMENTING CHANGE
17 CONCLUSION
18 Focus 1A: Primary Care & Community Short Term
19 Focus 1B: Primary Care & Community Medium & Long Term
20 Focus 2A: Hospital and Community Care interface Short Term
21 Focus 2B: Hospital Entry & Ambulance Medium & Long Term
22 Focus 3A: Education Short Term
23 Focus 3B: Education Medium & Long Term
24 REFERENCES
1
ACHR Paper
February 2013
Introduction
Human quality of life up to
and including end of life is
extremely important to
both the individual and their
families. However, many
Australians do not experience
a good death.
1

2
ACHR Paper
February 2013
The practice of medicine has changed and evolved. We have
experienced a golden era of healthcare with rapid technological
advancement enabling us to treat many medical ailments and
allowing us to live into the advanced years. This creates new
challenges for medical practice in particular, balancing the
imperative to cure with the personal, social and nancial burden
it can create. A limitless pursuit to cure may result in diminishing
benets in terms of health outcomes and an increasing emotional
and physical burden for the individual. There are also missed
opportunity costs and greater burden for society at large.
End of life care implies an awareness of this balance with respect
to the decreasing marginal benets of medical treatment for the
extremely sick and frail: in short, an awareness of the futility of
certain types of medical care. Futility is extremely difcult to
dene, but must be based on the best interests of the patient.
A futile treatment can be a treatment that:
(a) That is highly unlikely to produce the desired effect, or
(b) May provide some short-term respite, but at a high cost in
discomfort or further impairment of quality of life.
Each type of futility requires complex decision-making. Improving
end of life care requires clinical leadership, early recognition,
collaboration and system change, all of which is challenging, but
this does not dismiss the urgency and magnitude of the need.
A panel of diverse professionals met in Melbourne in February
2013 for a Round Table and sought answers to these topical and
challenging questions surrounding end of life care in Australia.
The panel, which included representation from legal, political,
medical, surgical, general practice, healthcare administration,
consumers, AMA, ethical, and academic groups, engaged in hearty
open discussion to create impetus for community debate and
support for political and practical action. This article summarises
the background of the current problem in Australia and the
discussions and recommendations of the panel.
3
ACHR Paper
February 2013
Executive summary
The practice of medicine must adapt to meet evolving practical
and ethical challenges of an aging population, in addition to
ongoing improvement in the technological capacity to prolong life.
To meet these challenges, doctors need to incorporate better care
at end of life into routine practice.
These issues were addressed at a roundtable convened by Melbourne and Monash
Universities in conjunction with The Australian Centre of Health Research. The
panel included diverse health professional leaders assembled in Melbourne early
in 2013. These representatives were from backgrounds of legal, political, medical,
surgical, general practice, healthcare administration, consumers, the Australian
Medical Association, ethical and academic groups. The panel engaged in vigorous
discussion to identify practical solutions to improve end of life care and how to engage
community and political support. This paper is a summary of that discussion.
Community engagement, legal cohesive supports, workow processes.
The key recommendations were:
1. Enhanced leadership and education in respect to end of life care
in healthcare profession and the wider community
Medical leadership and education:
Creater coordnaton ol care by generalst clncans lor complex elderly patents.
Provson ol tranng and resources lor general practtoners lor better care.
Medcal specalst colleges .e.. surgery, physcans, anaesthesa and lCU, psychatry} should
include end of life care communication and decision making training in their curriculum
and revalidation processes.
Senor practtoners wthn unverstes, hosptals and colleges} should demonstrate
leadership in collaborative patient-centred care.
Creater support lor |unor doctors to mprove communcaton sklls, recognse dyng
patients and enact appropriate and timely changes in goals of care.
lmproved avalablty ol documentaton regardng treatment lmtaton and advance care
plans for MET (Medical Emergency Team) calls.
Partnerng wth care lacltes to educate nursng home stall to provde ACP.
Enhanced research nto predcton ol poor qualty outcomes, and longtudnal studes ol
elderly patients undergoing surgical procedures.
Community education
Ensure clarty and consstency n explanng the scope and purpose ol advance care
directives and application in different clinical settings.
Partner wth proht and not lorproht groups lor publc awareness campagns smlar to
Engage with age.
Use senor Australan ol the year to talk about qualty ol lle, medcal wlls and ACP.
Creaton ol a central ACP webste and educatonal vdeos to promote and educate patents
about ACP for use in medical waiting rooms and other healthcare sites.
4
ACHR Paper
February 2013
The meeting process highlighted three key points for change:
1. Enhanced leadership and education in respect to end of life care in the healthcare profession
and the wider community.
2. Improved implementation of Advance Care Planning (ACP) and Advance Care Directives (ACD).
3. Legal, governance and national resources for support of improved end of life care
Research nto ellectveness ol possble publc polcy and campagns, encouragng the use
of social media to improve awareness of the issue.
Creaton ol a 1ED talk a notlor proht webste based on technology, entertanment and
design to spread talks and ideas, www.ted.com) about a good death to increase community
understanding and promote discussion around quality end of life care.
2. Improve implementation of Advance Care Planning
We need to implement Advance Care Directives (ACD) at appropriate points in the care
pathway and ensure that these are respected and followed by clinicians and recorded in an
up to date format for easy communication.
Community
Support lor general practtoners to perlorm advance care plannng wth traned advance
care planning educators.
Use ol teleconlerencng and other l1 solutons to support nursng consultatons wth
patients in their home.
Ensurng ambulance stall request ACP documentaton lor patents andor take smart phone
copies of plans to emergency departments.
Create a natonal regstry lor ACP wth patent controlled electronc health records.
Creaton ol ncentves lor people to ntate ACP at healthrelated lle events. e.g. durng
annual health check, private health insurance renewal, organ donation, admission to
nursing home, writing a will, drivers license renewal (see Table 1).
Engagement wth prvate nsurers to add ACP servces upon renewal ol prvate
health insurance, and to promote education for patients with referral to medically
supported websites.
Hospital
lmprove recognton and applcaton ol Advance Care Plannng ACP} n the acute care
setting.
Standardse crtera lor treatment lmtaton documentaton n hosptals.
Ensure early twoway communcaton ol advance care plans wth general practtoners and
aged care providers
Encourage use ol ACP practtoners lor npatent and outpatent hosptal relerrals
lncorporate ACP dscussons nto preassessment clncs lor surgery and outpatent chronc
disease clinics and rehabilitation units.
lncorporate ACP to surgcal consent process.
lnclude ACP on hosptal dscharge nlormaton lor CPs.
Audt and lollow up on mplementaton changes.
3. Improved policies and governance within the healthcare system
Support acute system changes for advance care planning in the community and hospitals.
Ensure consstency ol natonal legslaton regardng end ol lle care and Advance care
planning.
lmplement recommendatons lrom recent Relorm lor the Cuardanshp Act }an 2012.
(eg. section 11.38)
Support educaton ol legal prolessonals regardng the scope and purpose ol Advance care
directives. (ACDs)
lnclude standards lor hosptals and health care lacltes to oller support and respect
Advance care planning and accreditation requirements.
Provson ol resources and lundng lor pallatve care across acute, communty and prvate
and public sectors.
5
ACHR Paper
February 2013
6
ACHR Paper
February 2013
The problem
and the case for change
The days discussions commenced with three salient case studies
by senior clinicians to highlight the clinical end of life issues
Professor Paul Myles of Alfred Health and Professor Rinaldo
Bellomo, of Austin Health.
These examples highlighted the signicant distress and suffering for families, patients
and staff created by unnecessary and burdensome care in our system. As one clinician
described the pressure to keep treating:
I tried to explain all the complications (affecting the patient) and the reasons why
(but) there was absolutely no progress from this discussion. So in the middle of the
night, the patient deteriorated further and I chose to continue to treat him - despite
my wishes, despite my perspective, despite my professional opinion - because I felt
that any decision to the contrary might expose me to all sorts of legal and emotional
dangers that I do not wish to face.
The question was raised: Would it have made any difference if the patient had completed
an Advanced Care Directive?
In response: I think if he had an advance care directive and it clearly stated that he
didnt want to be on life support for a long time and he didnt want extraordinary
efforts to the level then being made, it might (have made it) easier for me to have a
discussion along the lines of, this is an act of love by pulling out. By stopping the
articial life support, youre actually delivering the last act of respect and love towards
this person whos so important to you.
The aging population and burden of disease
People are living longer and consequently the practice of medicine and the way we live and
die has changed. Therapeutic and technical advances have improved and extended lives of
many Australians, but at a cost. A new older generation of people is living with more complex
disease and gradual decline in quality of life.
The Australian Institute of Health and Welfare
4
projects a shift from 1:8 to 1:4 of the
population aged over 65 years and for deaths by chronic disease to dramatically increase to
250,000 per annum in 2036. More than 52% of Australians now die in hospital, despite the
fact that more than 90%
5
would prefer to die at home.
6-8
Despite the overall reduction in the
national death rate, the number of deaths in hospital is increasing by 0.6% annually for males
and 1.2% for females. In 2011, more than 146,000 people died in hospital in Australia.
9
As the
population ages, we are seeing an increasing amount of surgery that is of marginal benet.
1

We now know that 20% of surgical patients over 70 years of age will have complications
following surgical procedures resulting in extended hospital stay and increased mortality.
10
7
ACHR Paper
February 2013
Culture within the medical profession
The training and culture of different medical specialties have an impact on the delivery of care
and management of patients at the end of life.
10-12
Stopping treatment because of inevitable
death is sometimes felt as a failure, especially if the patient-doctor relationship has been
over the long term. In the surgical setting, deaths are compulsorily reported in morbidity
meetings and valiant attempts to prolong survival fervently defended. Few incentives exist for
appropriate discussions regarding patients overall goals of treatment.
From an ethical point of view, doctors have an internal conict between the preservation of
life, the Hippocratic oath and the concern to fulll the perceived duty of care to patients.
12

There is also an ongoing tension between the principles of patient autonomy, which is desired
by modern informed patients, versus medical paternalism. In many end of life situations,
the patient may not have the cognitive ability to participate in treatment discussions, which
adds the difculty of identifying who is responsible for a patients care. Additionally there
is sometimes a conict between the physicians role as patient advocate and that of the
hospitals role in providing for the community with maximum justice and equality.
To compound this, there are no clear ethical and professional guidelines and the legal
situation differs from state to state. This contributes to a general misunderstanding amongst
doctors of their rights and obligations.
13
The Medical Board of Australia code of conduct states:
You do not have a duty to try to prolong life at all cost. However, you do have a duty to know
when not to initiate and when to cease attempts at prolonging life.
14
However, knowing there
is a duty does not help physicians to make decisions on an individual basis.
Administrative challenges amongst health care systems
Unfortunately issues surrounding fragmentation of care, a culture of denial towards dying
and death, unrealistic media perceptions, inconsistent legislation and inappropriate funding
models hinder proper end of life care and advance care planning. The acute care hospital
system is designed for rapid diagnosis and treatment, maximal efciency and an ingrained
culture to save lives at all cost. The organisational structures,
15
especially after hours often
leads to end of life decision making defaulting to junior staff who dont have the authority
or condence to make tough decisions, conveyer belt emergency
16
management with
unnecessary transfer to specialty departments, and care that is reactive, unwanted and
unnecessary without adequate consultation with family is common. For instance, the role of
medical emergency teams (MET) has been perhaps inappropriately expanded within hospitals
to rescue dying patients
17
. Thirty percent of a typical MET team workload has been attributed
to end of life care.
18,19
For MET teams to perform their appropriate task, patient treatment
limitations should have already been claried.
Despite deterioration in condition to death often not being unexpected , there is often a
lack of documentation of Not-for-Resuscitation (NFR) orders or Advance Care Directives
(ACDs) available for the MET team.
20
A lack of recognition of realistic patient goals inuenced
by misperceptions of CPR capabilities from TV series and other media
21,22
may sometimes
resulting in confusion, crisis-led treatment, and failure to adequately meet the needs of
patients up until death. This problem is often present in aged care facilities, resulting in
unnecessary, unwanted and unsuccessful resuscitation attempts, with poor survival rates
and sometimes inappropriate transfer to emergency departments.
23
8
ACHR Paper
February 2013
There is currently a lack of available resources to enable improvement of end of life
care. These resources should include available, accessible trained staff to provide timely,
collaborative discussions towards end of life. Demand for specialised palliative care services,
which provides expert guidance for complex cases, has increased yet the availability of these
resources is unequal and insufcient, in both the private and public healthcare setting.
Australia does not currently have quality assessment tools such as the End of life Care Quality
Assessment Tool,
24
Gold Standards Framework: Enabling a gold Standard of care for all
people nearing end of life
25
and NICE Quality Standards national data collection in The UK
and Ireland.
26,27

The consequences of all of these challenges are signicant: Costly and often futile treatment,
repeated ICU admissions, high-risk surgery, an increased length of stay, multiple readmissions
and poor family communication and care.
The vision: Potential benets with improved end of life care
The benets of improving the system to address the above issues are multiple. For patients
and families there will be improved quality of life-before-death, maintenance of dignity,
prevention of psychological burden and less likelihood of unexpected conict or distress.
Allowing for time to say goodbye is critical. Early involvement allows for the patient to
participate as much as possible while they are still able to do so. There will be less pain and
suffering caused by futile emergency and inappropriate invasive care escalation18 in acute
hospital settings.
19,28
Secondly, for medical teams and carers, it will alleviate psychological,
moral and emotional distress and conict,
29
increase satisfaction, engagement and
relationships,
30,31
and improve accuracy of decision making in crises.
15
Thirdly, there will be
improved appropriate allocation of resources and positive examples of good end of life care
for within the health care system as a whole.
9
ACHR Paper
February 2013
The way ahead: recommendations
of the Roundtable
The major focus for change during the round table session was
education, but other key issues were discussed such as clinical
behavior, clinical leadership, practitioner condence, and hospital
procedures. The overall conclusion was end of life care is an
important part of medical practice. Areas of change evolved into
three themes:
1. Advance care planning implementation,
2. Education of medical professionals and the community, and
3. Improving policies and governance in the health care system.
How to best promote and provide these was debated.
1. Advance care planning
Hope for the best, but prepare for the worst.
32
The decision about whether to continue to offer life-prolonging care is ultimately a medical
decision, but the continuation of care must incorporate the individuals perception of the
impact of his/her burden of disease.
33
To do this requires discussion in an appropriate way and
at an appropriate time in the patients overall medical process and progress. This is the role of
advance care planning (ACP) and (ACDs). ACDs are written statements by competent persons
expressing their desires about their future medical treatment should certain conditions arise.
This covers the time when they may no longer be competent to make their own decisions.
It also allows them to appoint a substitute decision maker. ACDs are now recognised in
Australian legislation and have been considered binding in common law in the case of
A v Hunter and New England Health Authority
34
echoing that in Canada and the UK, where
failure to consider and follow a directive has been interpreted as assault.
ACDs were initially introduced into Intensive Care Units
35
and in palliative care. They have
also evolved into psychiatry, general practice, general medicine, geriatrics, renal dialysis
units, oncology and recent anesthesia clinics. Early efforts to improve end-of-life care were
focused on increased documentation and not-for-resuscitation (NFR) orders.
36
Subsequently
end of life care has become better coordinated, using pro-active patient-based discussions
regarding values and limitations to treatment.
37
Hospital-based trials including terminal
medical patients
38,39
and some in the perioperative setting,
40-42
have led to a reduction in futile
interventions, improved quality of care and increased patient and staff satisfaction. Other
physician-directed programs include the Respecting Patient Choices program at the Austin
Hospital in Melbourne, and the Enough is Enough resident training program introduced at
Geelong Hospital. A randomised trial in medical patients at The Austin Hospital Melbourne,
showed that greater benet may be achieved through end of life care that is timely,
appropriate, coordinated,, well communicated, and sensitive. It addresses an important
emotional and psychosocial need, and relieves distressing symptoms occurring during the
natural dying process.
10
ACHR Paper
February 2013
Trigger points for advance care planning
There are various points in the patient care pathway where a trigger could be created to
prompt care teams to suggest opening the discussion and commencing patient education
about advance care planning. These events cover the three stages of a persons life and
their health care pathway: the well patient in the community under the care of general
practitioners, the patient in the acute hospital care setting with decline in chronic disease
and the patient approaching end of life (Table 1). The NHS gold standards framework provides
a prognostic indicator guide to identify appropriate patients. {Gold standards} For the
majority of patients, advance care planning is most appropriately done in the community
setting, at times of relative health, with appropriate reection and medical guidance. The three
triggers identied by the NHS are rstly the Surprise Question: would you be surprised if the
patient were to die in the next 6 to 12 months? Secondly, the presence of a clinical indicator.
Thirdly, a patient choice. A collaborative timely and effective partnership must be developed
for delivery of care to these patients between the community and the health care institutions
and various settings.
In acute care, for elderly or high risk patients undergoing major surgery, an obvious setting
for initiation ACP discussions is during the surgical consent process or in the pre-admission
clinic.
43
Recently, the surgical pathway has incorporated timeout procedures to prevent
errors, ths concept could be brought nto the preoperatve settng as a tmeout to check
whether patient treatment goals and substitute decision makers have been discussed and
claried. Concerns however, have been raised that there is already a lot of difcult talk going
on in planning for the surgery itself, and adding end of life discussions may exacerbate the
patients stress, or may not be fully or accurately comprehended. Some kind of simplied
patient stratication in terms of their views on end of life care may be helpful, for example
the patient who wants all, versus the patient who is happy to be guided by clinicians, versus
the patient who wants minimal medical intervention.
Non-medical care or general community trigger points such as drafting a will, registering for
organ donation with drivers license renewal, renewal of private health insurance, or signing
enduring powers of attorney were also suggested. Many of the suggestions would benet
from integration with existing electronic records and computer databases (both public and
private) and the currently implemented Patient Controlled Electronic Health Record (PCEHR).
These also require engagement and buy-in from groups such as licensing authorities, private
health insurers, legal professionals and other paramedical providers. This type of program
would likely need a local Australian personality, in addition to support from the Council of
Australian Governments.
Most major hospitals are developing or have developed ACP units, as are hospices,
residential and palliative care facilities. ACDs have also been included in on-line self-registering
sites and government initiatives in Queensland and NSW44 for allocation of surrogate
decision makers.
45
11
ACHR Paper
February 2013
Limitations of advance care planning
Surrogate decision makers need to be trained to act in the best interests of the patient
and linked to ACP units. This was reected in the 2012 (NCEPOD) report on in-hospital
cardiopulmonary resuscitation in the UK.
46
One outcome of this report has been that
resuscitation orders of various hospitals are now stratied into categories such as Not for
intubation, not for inotropes, not for ICU, or not for chest compressions, however easily
reversible causes may be interpreted as appropriate treatment. Better approaches to consent
for these orders were suggested, including and opt-in consent. Failure to do this (as in
the current opt-out default position to treat) might constitute assault.
47
Many hospitals
now routinely document a patients NFR status and limitations to treatment on medical
admission with highly visible coloured documents as part of the patients medical record.
Table 1: Potential trigger points for initiation of advance care planning discussion.
GP/community/
social
Hospital/surgical/
procedural
Approaching
end of life events
Flu shot
>70 years age check up
Electronc health record
1akng out a prvate
health insurance plan
PBS salety net and
age trigger
Regsterng lor
organ donation
1urnng 75 lnked
with tax rebate?
Psychatrc patent
programs.
Medcal clnc patent
with new diagnosis or
deterioration of cancer or
chronic disease or requiring
referral to acute service e.g.
renal referral for diabetes
Preadmsson clnc lor hgh
risk surgery or patients
Spechc nhosptal support
team for potential medical
futility decision-making
Cyber rounds ol potental
patients requiring ACP support
ACD status ncluded n
discharge summaries
Makng a wll
Requestng a senors card
Commencement ol long
term organ support e.g.
dialysis, home oxygen
Dsablty support
pension application
Commencement ol
home support services
Admsson to nursng home
every patient should
have an ACP discussion
2. Education and role of medical professionals
A signicant increase in medical education and awareness is required to change attitudes
to make end of life care core business for most clinicians dealing with elderly patients. Not
all physicians will be willing and able to provide expert end of life care. However, there is a
clear need for more leadership by senior clinicians in hospital settings. All Doctors should be
expected to identify futility scenarios and initiate early discussion or referral with the treating
team, patient and family. Doctors need to enable, initiate, educate and support development
of ACP and the identication of substitute decision makers and to make this a routine part of
everyday practice.
One of the barriers has been the increasing sub-specialisation in hospital practice, which has
resulted in a loss of generalist physicians who may be able to take a more holistic view of
appropriate treatment.
Traditionally health was considered as multidisciplinary, however, much of that
multidisciplinary behavior has now been lost in busy hospitals. We have medical ward
rounds done without nurses and separate discussions between different members of
the core team. Existing structures work against input from the worried nurse who may
believe that a physician is doing something thats futile. Ideally, that discussion would
have happened on the ward.
48
12
ACHR Paper
February 2013
The roundtable consensus suggested that the ageing population demanded the training of
more generalists who can link, coordinate and direct the care of complex medical patients.
There is a need to ensure the generalist global perspective can coordinate care, rather than
a series of specialists with a lack of overall perspective of treatment goals. Generalists should
provide continuity and coordinated transitional care with referral to designated inpatient
end of life care teams who take into account patient goals and values. This model also
needs to be applied in private hospitals where access to adequate end of life care has been
traditionally limited.
49

To achieve the above goals requires education and training of medical professionals at
multiple levels, as well as increased community awareness. Allied health and other afliated
medical professionals also require increased education and training to perform ACP.
Suggestions included:
Postgraduate tranng opportuntes should ncorporate end ol lle care and adopt a
common approach in terms of curriculum planning.
Some tranng programs provded by health care networks already nvolved n tranng n
end of life care and could be expanded nationally for resident and internship programs.
Junior doctors should feel comfortable with the concepts of palliative care, the concept of
referral to palliative care and the concept of end-of-life care..
Senor medcal stall may value a plot group ol expert clncans to provde and nternal
leadership and support in end-of-life care.
Reaccredtaton and revaldaton CME programs should also provde avenues lor ncreased
within colleges and craft groups.
ACP rapid response or STOP referral teams
There is a role for an advance care planning service within hospitals to support clinicians in
providing timely, appropriate collaborative plans for patients throughout their care and allow
for a graded care pathway towards end of life and palliation. Their major role would be to
educate and empower all staff to apply advance care planning in their individual care settings
The team could also support education for appointed decision makers to perform an end-of-
life support role in the best interests of the patient. Within the team, Specialists allocated to
individual hospital units can be used to assist to tailor individualised care plans, e.g.: surgical,
oncology, renal dialysis, ICU, MET teams, geriatrics, acute medicine, respiratory and heart
failure clinics. The benets of this supportive care pathway and specialist engagement are
likely to result in improved quality of care for many patients and avoidance of early resolution
of family and inter-specialty disputes. Finally, preventing late or after hours referrals with
earlier end of life discussions would also greatly reduce stress and allow for rational reection,
consideration and a collaborative approach to aligning patient and physician goals of care.
18

In general, there is a lack of opportunity for collaborative team forums to allow the
intensivist, anaesthetist, physician and surgeon to discuss - outside of that heat - how
they might commonly approach matters. A framework needs to be developed to
provide for these discussions in health services to enable building of a sense of trust and
agreement on general principles for ICU admissions.
50
13
ACHR Paper
February 2013
In community services ACP referral teams can provide a similar role in nursing homes
and other community hospice settings. At Barwon Health these teams in conjunction with
Medicare local services have dramatically increased the uptake of Advance Care Planning in
the local community. Additionally, the Alfred Hospital in Melbourne has medical registrars
visit nursing homes, reducing the rate of emergency department transfers. Further, access
to outpatient palliative care improves the likelihood of patients being cared for during
their last days at home, rather than in hospital. Remote and regional care facilities also
experience a lack of resources for appropriate and timely end of life care. Developing
outreach and specialist links for video conference referrals could improve care provision.
A new and improved framework should include
Clarhcaton ol governance, roles and responsbltes, communcaton processes, resources,
training, evaluation and audit feedback processes and arrangements for collaboration with
other health care providers. ICU admission guidelines need to be improved.
End ol lle care programs should receve greater emphass n current qualty and
safety structures.
Approprate documentaton and accredtaton ol care plans, treatment lmtatons,
surrogate decision makers and family discussions critical to emergency and non-emergency
treatment accurately reecting patients wishes, should be accessible and current for all
clinical care teams.
Collaboraton between treatng teams should be lacltated by better documentaton and
planning and resources to allow after-hours availability when necessary.
3. Health care resources, policies and support structures
As well as education and culture change driven by the medical profession, support from
government and regulatory bodies are required to develop the infrastructure necessary to
provide appropriate end of life care. For instance initiatives such as the PCEHR
51
can greatly
increase coordination of care and communication between different health providers such
as nursing homes and emergency departments. The PCEHR have now received funding to
include ACP as a part of their format. Technology advances, such as the use of smart phones
and mobile scanners for ambulance staff can be linked.
Increased research data is needed in this area to investigate what is currently happening and
to determine where improvements can be made. Longitudinal approaches such as registry of
surgery outcomes for all those over 80, and data to better measure the benets of individual
surgical procedures in the elderly should be instituted. There is also need to evaluate the
effectiveness of end of life care and patient and relative satisfaction with care planning,
communication awareness and education programs. There is also a need to improve the
accessibility of advance care directives, among minorities. Further development of effective
and standardised approaches to advance care planning discussions, including how best to
present prognostic information to patients is also required.
The Federal Government should engage Medicare reform to provide reimbursement for GPs
to initiate ACP discussions, similar to the way in which they are now paid for coordinating
care teams. It has also been recognised that there is an increasing need for palliative care
services across Australia. This has been represented in the Senate Palliative Care Enquiry
2012
6
, Victorian Policy and strategic directions for Palliative Care 2011 2015, Clinical Practice
Guidelines for communication in End of Life issues, June 2007 and National conference
Brisbane 2012.
14
ACHR Paper
February 2013
Palliative care combined with advance care directives has been demonstrated in studies from
the United States, Spain and UK to reduce health spending and decrease the likelihood of
in-hospital deaths.
52
Workow structures and the institution of national guidelines are needed
to make it easy to make the right decisions. Current guidelines for palliative health care
teams, patients and families such as PREPARED, can inform a better model.
53
Finally, we need
to ensure that reform is supported by consistent simplied national legislation, denitions,
and legal boundaries throughout Australia.
54
The recent reform of the Guardianship Act of
2012 section 11 referring to advance care plans and case law, A v Hunter New England Health
Authority 2009
55
provide support for Advance Care Directives in law. A community education
program to empower surrogate decision makers to be assertive needs clarity within each
jurisdiction and a well-dened hierarchy of decision makers.
Standards and accreditation
The Australian Commission on Safety and Quality in Heath Care is developing a national
standard for end of life care accreditation.
50

50
End of life care recommendations are now
included in the National Safety and Quality Health Service Standards. They include the
national consensus statement regarding the recognition and response to clinical deterioration
4.4
56
and reects the need for organisations to take a patient-centred approach, supporting
and informing patients and their carers to enable informed consent to treatments
57
.
Standard 9, Recognising and responding to clinical deterioration in acute health
care specically 9.8, refers to a need to ensure information regarding advance care
plans and treatment limiting orders are available in the patient clinical record, where
appropriate, that a system is in place for preparing and/or receiving advance care plans
in partnership with patients, families and carers, and that these are appropriately
documented in the patient clinical record.
57
Standard 2 refers to Partnering with Consumers and reects increased community
engagement, and feedback to help improve safety and services. However a more specic
focus on end-of-life care, access to palliative care, and a structured approach to advance
care plan would be benecial.
57
To achieve all this we need a central platform (a name and a face!) through which to market
the message. Consistency of language is important also, particularly in legislation where
different terms have been used in the past to describe a similar concept. In the longer term
community education, led by clinicians and identied community leaders is a primary
necessity. Senior clinicians should lead the program. Political will and courage is needed to
ensure public support.
15
ACHR Paper
February 2013
Risks and concerns
with implementing change
This challenging area of medicine is of course not without
signicant risks and concerns with implementing changes.
Broadly these fall into several categories:
1) Protection for the vulnerable and the sanctity of life
Safeguards must be in place to protect vulnerable patients and allay concerns and their
families of possible neglect, abandonment, exploitation or elder abuse. A thorough
understanding of the purpose of an advance care directive by patient, family and physician
must be sought. There should be an acceptance that the clinician will err towards the side of
caution to preserve life. A value-based assessment may be more benecial for understanding
the wishes of patient and distinguishing between acting in patients best interests not just
family interests. Non-English speaking, regional, migrant or remote communities must also
be provided access for appropriate and high quality end of life care.
2) Flexiblity and respect for patient autonomy and dignity
Respect for patient autonomy and dignity are fundamental ethical principles that intersect
with end-of-life decision-making.58 Patients must be allowed to refuse treatment and maintain
the right not to be involved in active care. On the other hand, patients do not have a right to
demand napproprate care lrom any care provder, physcan gudelnes create reassurance
and legal support for the medical authority to refuse patient requests for inappropriate care
and must be clear and robust. Care must be taken to prevent patient ordered or dictated
medicine and preserve medical judgment and the appropriate identication of futility.
Following from this, plans must have the exibility to change, yet maintain authenticity in
documentation. Ensuring physician condence in the up to date validity of end of life plans
and directives will be challenging. In addition, incorporating these plans into continuous care
models and understanding the difcult nature and changing desires of patients and families
will need further renement. These plans must not be prescriptive for specic events but
rather focus on a description of patients values and quality of life goals and allow for exibility
and incorporation of differing philosophical values and religious belief.
3) Education and promotion
Media representation and marketing should be encouraged to support positive messages
about end of life care to prevent possible media misrepresentation e.g. death panels.59
Much stigma and myth is associated in the public domain with palliative care. Sensitivity and
discretion is needed to approach discussion about death in a positive framework to combat
fear and resistance to change and increase the willingness of the medical profession to open
discussions. Medical myths surrounding perceived heroic treatment attempts and fear of
losing business need to be combated to allow care to be improved.
16
ACHR Paper
February 2013
Conclusion
Leadership by clinicians in end of life care is needed to
encourage the medical community to make it a routine part of
everybodys routine practice. A return to a holistic focus, revival
of the generalist, and support for families is needed. To quote
Hippocrates, the purpose of medicine is To cure sometimes, treat
often, comfort always. This round table meeting has provided
valuable guidance and progress towards viable practical strategies
to improve and embrace end of life care in Australia.
We are now in a position to act upon these recommendations and
improve the lives of many Australians and the quality of health
care delivery of much of our health care system. This privilege
comes with responsibility to provide realistic, achievable care goals
for our patients. Clinical professionals must take action to improve
self-education, re-examine and restructure health care services
and provide appropriate resources to enable patients and their
families to have a positive experience at the end of life.

To cure sometimes,
treat often,
comfort always.
17
ACHR Paper
February 2013
Focus 1A:
Primary Care & Community
Short Term
Broad Strategy Possible Tactics
Engage GPs to
encourage patients to
plan for old age
Trained nurses in end-of-life discussions to
regularly visits GP surgeries to consult patients and
promote advance care planning education.
Expand the existing model with some
nursing homes to include local GPs.
A Respecting Patient
Choices outreach to
nursing homes
Nurses trained in end-of-life discussions to
provide ongoing training for nursing homes
staff and assist patients to prepare ACPs.
Consider requiring Nursing Homes to implement
end of life care planning programs.
Use nursing home
admission as the
trigger for a discussion
about ACPs and ACDs
Advise political and executive decision-makers to insert
this requirement into the existing accreditation Scheme.
Encourage a holistic approach towards care
to collaborate between sub-speciality care
units. And multiple healthcare providers.
A checklist or tick-the-box strategy
Publicise the above
programs for enhanced
community engagement
and promotion of
awareness in quality end
of life care
Enlist a promotional gurehead
e.g. the Senior Australian of the Year.
Generate a motto such as engage with age.
Develop a set of agreed messages and target audiences.
Add publicity through an assigned promotional
week e.g. Palliative Care Week to focus
on the need for wider discussion.
Generate reliable patient
data
Encourage and promote more eHealth records
Develop a robust and acceptable denition of good end of
life care to measure current practices against.
Consider creation of a registry for audit and research of
effectiveness and development end of life care treatment.
Encourage health services management research into
improving the patient care pathway at end of life.
Involve key NGOs in the development of IT technologies.
18
ACHR Paper
February 2013
Focus 1B:
Primary Care & Community
Medium & Long Term
Change the wider
communitys attitudes
to death and dying
Implement a long-term attitudinal change program
Clarify consistency and positivity in language around end of
life and a good death.
Assess and test effectiveness of promotional actions and
impact.
Create realistic time frames and goals for the program
implementation in the medium term.
Implement simple
changes with improved
and rapidly evolving
technology and ehealth
records
Enable more people to stay in their homes as they age.
Support for communication of patient histories, and
medical decision-making.
Increase rapid, accurate and reliable communication of up
to date or live condential, information between points of
care and health practitioners.
Allow for eConsultation and faster delivery of information
through Internet resources.
Create a central Internet platform for coordination of end of
life care and resources for medical and public education.
19
ACHR Paper
February 2013
Short Term
Identify time points for
patient entry to hospital:
These are:
1. Presentation to the
emergency department: by:
a. Self-referral
b. Ambulance
c. Health practitioner,
specialist or GP from
an outpatient clinic.
2. Presentation to hospital
clinics for
a. Elective surgery or
b. Treatment of chronic
medical diseases.
In Emergency department:
Educate GPs, patients and nursing homes about increased
awareness for boundaries of care with chronic functional
decline to reduce need for emergency care, through
education of surrogate decision makers, and increase
outreach services in homes.
Monitor nursing home referrals and inappropriate use of
emergency services.
Initiate discussions and seek ACP documentation for at-risk
patients prior to referral to inpatient teams on presentation
to hospital.
Encourage paramedical staff when attending nursing
homes, to seek and collect current ACPs for patients and use
smart phones to record this documentation for emergency
department and hospital documentation.
In elective pre-admission clinics
Introduce Advance Care planning practitioners and screen
patients for referral.
Refer appropriate patients for ACP consultation.
Engage ICU teams for early discussions of realistic treatment
limitations following surgery.
In medical and surgical outpatient clinics:
Identify frequent yer patients and encourage appropriate
referral to ACP teams and discussions between specialist
physicians .
Patients with newly diagnosed terminal illness or rapidly
progressing chronic disease (e.g., requiring dialysis, end
stage heart failure or new cancer diagnosis) to Advance Care
Planning teams.
On hospital discharge: Add to discharge summaries a tick box to prompt asking
if an ACD has been created in hospital, and enhance
communication with general practitioners and promote
ongoing advance care planning.
Ensure patients with newly identied chronic disease
or approaching end of life have end of life care planning
commenced and communicated effectively to GPs
Engage the private health
insurance industry
Reiterating the need for care in this process, the suggestion
was to encourage private health funds to begin a discussion
with their clients.
Focus 2A:
Hospital Entry
20
ACHR Paper
February 2013
Medium & Long Term
Increase use of
electronic health
records
Continue to improve application of electronic health records
to allow for rapid reliable communication of up to date
patient treatment plans between acute and primary care
providers.
Provide a platform for collaborative care discussions and
real-time rapid communication between specialists, patients
and families in different locations.
Promotion of
generalists
Engage generalists to assist specialist outpatient clinics
including surgical pre-admission process, particularly for
patients with multiple health issues
Audit and review Create a database of surgery and outcomes in all patients
with signicant frailty or the age of 70.
Establish a database of advance care plans and prompts for
annual reassessment, and the identication of appointed
surrogate decision makers.
Focus 2B:
Hospital Entry
21
ACHR Paper
February 2013
Short Term
Address Gaps in
Education at three levels:
1. Undergraduate
2. Postgraduate
3. Senior practitioners
Undergraduate:
Reassess nation-wide current university medical teaching
curriculum and integrate a common approach to the
curriculum on end-of-life issues and practice.
For post-graduates
Generate a national agreement for basic management of
end-of-life care to become a key objective of internship
training.
Encourage specialist colleges to incorporate teaching and
skills development of ethics and successful end of life
communication into their accreditation and training.
For Seniors
Focus on core groups of interested informed and engaged
medical specialists to become leaders and advocates. Their
role is for promotion of change, referral for complex and
more demanding cases, and promotion of quality end-of-life
care.
Encourage quality end of life care as part of re-validation
and accreditation through regulatory authorities.
Encourage hospitals to address the need for requiring
quality health care at end of life in all institutions.
Acute hospital clinical
bedside interface
Develop an Advance Care Planning help referral teams or
STOP teams to provide collaboration and education and
allow for advance care planning discussions.
As a nal alternative to the MET team, this would provide
a 24hr service like an organ transplant coordinator to be
available to coordinate and assess the need for referrals.
This may provide support for junior staff after hours as a
last resort and escalate and support rapid senior clinician
decision-making.
Encourage an informed and expert third party to facilitate
resolution of difcult discussions, in particular where
conict over best treatment pathways may arise between
clinicians.
Develop an open culture and framework for support and
discussions within health services about end of life care.
Rebuild the multi-disciplinary team, in particular, re-
introduce the generalists.
Focus 3A:
Education
22
ACHR Paper
February 2013
Medium & Long term
Develop and implement a
clinician led community
education and
engagement program
Generate political support.
Perform community research to understand current
community attitudes, regional variations and the
signicance in different ethnic groups in end of life
planning, Identify effective methods of communication to
appropriate target audience, i.e.: community centers, at
annual u shot, annual events.
Look at low-hanging fruit, easy solutions e.g. tap into
the process of preparing a Will or align with funeral plan
insurance.
Examine the legal
framework
Codify and simplify the legislation.
Encourage national reform for consistency between
different jurisdictions and avoid ambiguity.
Establish a clear hierarchy of decision-makers for legal
issues and conict resolution.
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23
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February 2013
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