This chapter looks briefly at other important issues that arose
throughout the committee's inquiry yet which did not fall specifically within
the terms of reference.
Throughout the inquiry the committee received evidence suggesting that
palliative care service provision could indeed be improved if Australia were to
consider implementing approaches to palliative care that had proven effective
in international jurisdictions.
Gold Standards Framework
One approach to care that was raised throughout the inquiry by numerous
stakeholders was the Gold Standards Framework (GSF) developed and used in the
Palliative Care New South Wales informed the committee that the GSF,
which was designed to support advanced cancer patients in the community,
focuses on community care rather than hospital based care. PCNSW however
suggested that its translation to the Australian context may be difficult as
the relationship between the government and general practitioners (GPs) in the
UK is different to that in Australia. PCNSW told the committee however that in
their opinion the 'GSF has some good tools and processes.'
Palliative Care Australia (PCA) informed the committee that they too
advocated for the adoption of the GSF by GPs:
We were certainly part of their consultation process around
setting up the Medicare Locals and we are certainly advocating with them at the
moment for a national program for GPs that is modelled after the Gold Standards
Framework in Britain.
However, the committee heard that some care providers in Australia are
in fact already applying the framework. Alzheimer's Australia informed the
committee of a pilot being trialled by Tasmania's Cradle Coast Council.
Representatives from Tasmania further explained the pilot to the committee:
The project is really based on the United Kingdom Gold
Standards Framework, which has been adapted to Australian conditions. It is
used in the UK in over 1,000 care homes, and has been since 2004. There is a
lot of evidence showing that it gives better end-of-life care and better
assessment and management of symptoms. There is more attention to those parts
outside of physical medicine, such as the psycho-social, cultural and spiritual
aspects. One of the important things is that it reduces avoidable
hospitalisation. In fact, it promotes communication. We get better
communication between the residents, all of the staff members within the
institutions and the carers outside of the institutions.
As well as Cradle Coast Council in Tasmania, Amaranth Foundation informed
the committee that they too use the GSF in the provision of care:
We actually use the gold standards. The NHS in the UK use
that prognostication question—just the basic one, that no-surprise question:
'Would you be surprised if this person were to die sometime in the next 12
We applied that basic question across all the people with
advanced chronic illnesses who attended a GP practice. We then identified those
people and, within that 12-month period, we brought them in for their usual
chronic disease screening process. The nurse would take their blood pressure or
do their diabetes, spirometry or whatever check they were doing and I would sit
down and have a chat with them. I would ask: 'How do you feel about what is
happening to you? What are some of the issues in your life?'
Nursing Home Doctors
Another model that was suggested be looked into for adoption in the
Australian context was that of the Nursing Home Doctor model used in the
Netherlands. BlueCare suggested that the committee:
...look at the model used in the Netherlands, which is a
nursing home doctor model [and] ...think about a feasibility study of the
introduction of a medical specialty in aged-care medicine in residential
aged-care, which is different to our current geriatricians. These specialists
would be specifically trained and employed in residential aged care. I recently
had the privilege of visiting the Department of Nursing Home Medicine, at VU
University in Amsterdam. There they use a teaching nursing home model and they
provide two-year training, which has been offered in the Netherlands since
1990, when they realised that reliance on GPs for care of their elderly was not
adequate. So whilst it is a more expensive model, compared to using GPs, they
find that cost savings are realised, with an almost 95 per cent death rate, in
the nursing home setting, as opposed to transferring people to acute care,
which is what often happens in Australia.
BlueCare explained that in addition to helping achieve the outcome of
deaths in the community setting rather than hospital, the model used in the
...also about quality of life and promoting residential
aged-care facilities as homes where people can maintain quality of life and be
well until they die—which is the palliative care philosophy. You need to have
personnel who can not only do good assessments, order the right medications or
stop the wrong medications, and look to the future to make sure the care people
receive is the best that it can be but also support the family through that. So
it is partly about stopping people inappropriately going to hospital. We also
do not have any data comparing the outcomes for quality of life between that
system and others. It is such a unique system that they do not tend to match it
with that of other countries.
BlueCare did however explain that at present the model used in the
Netherlands could not be implemented in Australia given the Australian system's
requirement that a patient choose their general practitioner:
At the moment, legislatively we cannot oppose somebody having
a particular doctor. I have done research in organisations where I have had to
write 40 letters to 40 GPs to tell them that we were doing some research in a
particular facility and could they participate. If one or two registered nurses
have to deal with 40 GPs, administratively that is a major challenge.
The committee considers that the ongoing development of the provision of
palliative care service and models of service delivery in Australia should be
informed by international best practice. The committee however considers that
this is occurring largely as a result of the dedicated practitioners and
academics who work in this field to achieve these outcomes.
In view of the evidence the committee received concerning the
effectiveness of service delivery models that focus on 'dying in place'
(covered in Chapter 7), the committee would like to see further research on the
appropriateness of introducing a Netherlands-style 'nursing home doctor' model
Access to and use of schedule 8 drugs
Throughout its inquiry stakeholders discussed the importance of ensuring
access to schedule 8 drugs for palliative care patients. Schedule 8 drugs are
Schedule 8 (Controlled Drug) – Drugs of addiction. This
category is for substances that should be available for use but require
restriction of manufacture, supply, distribution, possession and use to reduce
abuse, misuse and physical or psychological dependence.
The committee heard that the use of schedule 8 drugs is common in
The use of morphine and other opioid medications is common in
palliative care, as well as in the management of pain more generally, for
example for people with chronic pain of all types. These 'drugs of dependence'
are listed on Schedule 8 of the Poisons Standard published by the National
Drugs and Poisons Schedule Committee and are thus commonly known as Schedule 8
(or S8) drugs.
Although the use of schedule 8 drugs is common and necessary for pain
management in palliative care, the committee consistently heard that access to
these drugs is at times problematic.
The South Australia Advanced Practice Palliative Care Pharmacists (SAAPPCP)
stated in their submission that although the addition of pharmaceutical
benefits for palliative care had improved access to a small number of listed
medications for some patients:
...there is an evidence base for a number of medications for
patients with some symptoms, such as neuropathic pain and bowel obstruction
that are difficult or even impossible to access by many patients. The use of
these medications is often endorsed by national and international professional
organisations in clinical guidelines; however, health professionals can have
difficulties using the guidelines as the medicines concerned are not always
available to the patient.
The SAAPPCP went on to explain that:
An additional problem associated with the non-PBS listing of
many relevant palliative care medications has implications for pharmacists and
medication safety. The standard consumer information provided does not include
non-PBS medicine use. Pharmacists have to ensure that patients and carers are
provided information about medication options, benefits and associated risks in
a format that meets the patients/carers needs. Where evidence is available for
additional use of medicines, inclusion of expanded indications on the PBS would
facilitate improved information provision.
They suggested to the committee that what was required was a 'full
review of the medications available on pharmaceutical benefits for palliative
care' given that a 'lack of standardisation in prescribing practices across
Australia has significant flow on effects to other aspects of the patient
management, including supply and administration of medicines in a timely way.'
In addition to these concerns, Aged and Community Services of Western
Australia spoke of the jurisdictional inconsistencies that also led to access
Legislative jurisdictions also impact on a nationally
consistent approach to providing health care because of differences in
regulations relating to who is able to administer medicines (such as Schedule 8
drugs) and the use of syringe drivers to manage pain, and indeed, access to
certain drugs that are funded under the Pharmaceutical Benefits Scheme and
public hospital system.
The Pharmacy Guild of Australia (the Guild) also raised these concerns:
...there are differences that apply across jurisdictions that
can hinder the access of palliative care patients to medicines. This is
particularly problematical in communities on the border or across territories
where patients may travel across jurisdictions to access appropriate care ... If
you are going to have a national monitoring scheme for opioids, you should have
regulations in a standard format in place before you start. ... To have this
legislation in common across jurisdictions would facilitate the care of
The Guild suggested that having a safe disposal system in place could
assist in the control of schedule 8 medications:
The disposal of controlled drugs in a proper manner could be
achieved by having a safe disposal system put in place. Safe disposal is
essential to avoid accidental poisoning of household members, particularly
children, medicine abuse and toxic release into the environment. As such, the
guild would recommend that a return system be considered. That would assist in
removing high-risk medicine such as schedule 8 medicines and cytotoxic
medicines from households where they are no longer required.
When asked who they consider should address this problem, the Guild
explained that action was required at the federal level as the federal
government could ask the states to introduce 'uniform regulation for the supply
of schedule 8s:'
It is a common-sense approach and a lot of other things under
COAG have been established to deliver a uniform set of rules. Providing the
Commonwealth were putting a strong case that this was needed for a universal
control system as well as for other more humane and medically based conditions,
that argument should certainly win the day. I think the Commonwealth would need
to take the lead role.
The Guild went on to explain that in their opinion there should be no
arguments against such a reform although the states may resist any such changes:
There is no argument against it, except the states like to
control what goes on. The argument the states could run is that, even though
there would be a centrally based scheme of approval, if something went wrong
they would have to clean it up. They would like to have control within their
own states to make sure nothing goes wrong that would be adverse to the
patient. So you have an issue there of the cost to the state if there is a
misadventure, as opposed to an argument about the universality of availability.
You would probably need to address those questions about what the funding
mechanisms are to monitor at a state level, as opposed to having regulations that
are all-encompassing across state borders.
They informed the committee however that steps were being taken to
improve standardisation and national consistency:
...the first step in the process has been put into place. We
now have national registration of health professionals. We all have a number,
whether we like it or not, and that is already in place. There are linkages in
our dispensing systems and our recording in Tasmania and narcotics are recorded
live to the state health department. It is a model that is going to be rolled
out around the rest of the country as a government initiative.
The Pharmacy Guild explained their 'hope for global palliative care
funding being made available to include such things as wound care, compound
medicine and nutritional assistance:'
We believe that this could be achieved by the expansion of
the palliative care schedule that already exists. Any controlled drug
monitoring system should take into account that there will be high use of
opioids by this particular group of people during the palliative care phase.
The committee also heard that difficulty accessing medication is an
issue in rural areas, particularly where medical practitioners are few and
nurses do not have access to the necessary drugs:
...where populations tend to be fairly small...the local doctor,
the GP, is usually the first port of call. There are towns that do not have a
GP and where specialist nursing staff may be of assistance. A lot of palliative
care problems can be relatively quickly sorted out by nurses who are properly
trained, but they still need access to prescribers. You basically cannot run a
non-prescribing service in palliative care and you also need pharmacy back-up...
your little kit of drugs, for instance, that you might need to manage someone
dying at home is mostly tightly regulated as schedule 8 drugs. So they are not
the sorts of things that your community pharmacy is going to be happy to supply
without appropriate authority and in the kinds of amounts and volumes that
might be needed. Specialist nursing staff can do a lot but they cannot do that
without prescribers. We think that some of the newer technologies might be able
Professor Boyle went on to explain that new technologies may assist in
the delivery of palliative care, including pain management, to rural and remote
areas. He cited a possible role for the national broadband network:
We have a project with the National Broadband Network, for
instance, which has called for research projects to look at delivery of care
using telemedicine, and things like managing people's pain using the broadband
network in rural areas might well be feasible. We do not know whether that will
get funding, of course.
Although these problems of access are greater in rural areas, the
committee heard that they also extend to residential aged care facilities where
problems accessing medication often arise as a result of a limited workforce:
Where we have difficulty is if that aged-care facility does
not have a registered nurse and we are requiring morphine or some schedule 8
medications. If there are untrained staff—and I am talking about PCAs—then we
will not train them on that.
What we will often do is train a family member, just like in
the home. Just like when you are in your own home, we will train a family
member. We find that facilities will not allow a family member to give
medications because that confuses their regulations, but we will actually
educate a family.
Professor Jane Phillips spoke of this problem and suggested that the
concept of nurse practitioners who can dispense controlled drugs could assist
in both rural and regional areas and residential aged care facilities:
...it is really important to make sure that we do not make
regional differences with nurse practitioners being in only rural communities
and not necessarily in metropolitan communities. It should be based on where
their skills would be best utilised. Yes, some of the issues around prescribing
items are really quite important because you do not actually want to penalise patients
by not being able to access their medication because they are seeing a nurse
Palliative Care Australia went further and suggested that registered
nurses be authorised to provide the 'full range of symptom and end‐of life support including:'
...symptom assessment, the ordering and administration of
medications, particularly schedule 8’s and to be able to provide p.r.n.
PCA suggested that this may assist with limiting the:
...many occasions staffing shortages lead to unrelieved pain
and admission into an acute care facility, often through Emergency Departments
with unnecessary trauma for both the patient and family. Rural RACFs can only
manage patients with complex palliative care needs if they are able to access
support, consultation and medications from specialist palliative care teams.
This requires more staffing of specialist palliative care teams.
When these matters were raised with the department, DoHA explained that:
Each state and territory has its own legislative requirements
on the matters that must be included on a valid prescription for a Controlled
Drug (Schedule 8) medicine which differ between states and territories. the
Therapeutic Goods Administration (TGA) does not regulate prescriptions. Note that
the technical requirements for prescription validity is a small aspect of
regulation of Schedule 8 medicines by states and territories, which have
differing approaches to the public health management of Schedule 8 medicines in
drugs and alcohol treatment programs, attention deficit hyperactivity disorder,
and longer-term use.
The TGA is aware that states and territories have given
priority to assisting the delivering of the Electronic Recording and Reporting
of Controlled Drugs (ERRCD) initiative. This initiative is funded by the
Australian Government Department of Health and Ageing as part of the Fifth
Community Pharmacy Agreement between the Commonwealth and The Pharmacy Guild of
Australia. A move from manual to electronic recording and real-time reporting
will improve the ability to efficiently monitor the prescribing and dispensing
of Controlled Drugs to ensure appropriate access to these medicines. Real-time
access to accurate dispensing information will improve the efficiency by which
state and territory regulators, prescribers and pharmacists identify problems
of forgery, abuse and doctor shopping and improve public health outcomes.
Another matter raised with the committee was the issue of 'off-label'
use of drugs which stakeholders suggested occurs frequently in palliative care.
According to the Pharmacy Guild of Australia, between 30 and 45 per cent of
prescriptions are used 'off-label':
I would respectfully suggest you could be looking at between
30 and 45 per cent of prescriptions that are dispensed in this space could well
be for off-label use. For example, the hypnotics and benzodiazepines that are
used have often been approved for sleeplessness or anxiety but in fact in this
space are used for delirium, tremors and something similar, and on and on it
goes. Quite a substantive volume of the drugs that are used in this space are
used for so-called off-label use.
The Guild explained that although the use of drugs 'off-label' is not
illegal it requires additional work for prescribers:
It is quite a legitimate use. There are some connotations out
there that it is illegal. It requires extra work on behalf of the prescribers
to provide adequate patient information and that is that you need, as I
understand the law, to have an informed patient in this instance. In the case
of palliation, that is sometimes quite a difficult space to go into—to have a
patient who is informed, if you are using an end-of-life drug for something
like delirium, is an extraordinarily challenging circumstance; good luck.
When questioned about these matters the department explained:
...there is a project that we are funding that is looking at a
number of different off-label drugs for use in palliative care. I think at
present there are 26 drugs on the PBS in 50 different forms that are available
for palliative care services. They are under the PBS, but obviously the
decision to place a drug on the PBS requires a recommendation by PBAC before
the government takes action.
The department further explained that:
The practice of prescribing registered drugs outside of their
approved indications is not regulated or controlled by the Therapeutic Goods
Administration (TGA), as it is at the discretion of the prescribing physician.
In these circumstances, the TGA is unable to vouch for the safety and efficacy
of this use for an unapproved indication and its use is therefore regarded as
experimental. It should also be realised that the Australian Government, the
Secretary or a delegate of the Secretary cannot be rendered liable to a person in
respect of loss, damage or injury suffered by the person as a result of, or
arising out of the use of a therapeutic good for a non-approved indication.
The committee was concerned by the evidence it received suggesting that
palliative care practitioners often encounter barriers when trying to prescribe
medications for their patients. The committee considers that these barriers to
access are the result of a number of factors and therefore to overcome the
problems a multifaceted response is required.
The committee acknowledges the importance of controlling the use and
disposal of schedule 8 drugs, however considers that the need to control these
drugs must be balanced with recognition of the important role they play in
providing relief to both patients and families, where a loved one is passing
through the latter stages of life. The committee takes the view that this
cohort of patients has unique needs that require flexibility. Impeding access
in these cases may in fact cause more pain for both the patient and their
The committee also takes the view that the current mechanisms in place
to control schedule 8 drugs is resulting in greater off-label use of medications.
The committee considers that as off-label use is not regulated by the TGA,
steps should be taken to look at improving access to schedule 8 drugs so that off-label
use is minimised.
The committee recommends that the federal government initiate a full
review of the medications available on the pharmaceutical benefits scheme for
palliative care, particularly schedule 8 drugs.
The committee recommends that through the Council of Australian
Governments the federal government expedite the introduction of uniform
regulations for the supply of schedule 8 drugs.
The committee recommends that the federal government review the role of
nurse practitioners and registered allied health professionals in prescribing
palliative care medications to remove barriers to accessing such medications in
settings of care where these professionals have a central role in care.
The role of private health insurers
Throughout its inquiry the committee heard that there are limited
private health funds that cover the provision of palliative care in Australia.
Palliative Care Australia (PCA) explained that this was the result of it
(palliative care) being seen as a 'bottomless pit' rather than a 'prudent investment'
not because of any legislative barriers:
There is no legislative barrier to the private sector
providing palliative care and the patients claiming for these services through
their health insurance. However, insurance funds do not see why they should
place it on their schedules. It is seen as a ‘bottomless pit’ rather than a
prudent investment where they could save on inpatient and drug costs.
PCA went on to explain to the committee that although some private
palliative care service providers had managed to receive funding from private
health insurers, federal government leadership was necessary to encourage
greater participation by private health funds in the funding of palliative
...the general lack of willingness of private health insurers to
fund more cost‐effective
palliative care reduces the overall efficiency of the health system and
inhibits equity of access. This is an area where national leadership by the
Australian Government in relation to demonstrating the business case and
negotiating greater participation by private health funds in the funding of
palliative care, could be very helpful and productive.
PCA informed the committee that the National Hospital Morbidity Database
(NHMD), which provides information about the main funding sources for health
care in terms of admitted patients separations, identified that:
77% of palliative care was for public patients; 16% of these cases were funded
by private health insurance and 7% by the Department of Veterans’ Affairs.
There are marked differences in funding sources for
palliative care in public hospitals across jurisdictions ranging from 68%
public funding in New South Wales to 96% public funding in the Northern
Territory. The proportion funded by private health insurance ranges from less
than 1% in the Northern Territory to 23% in New South Wales.
The main funding source for palliative care in private
hospitals is significantly different from that in public hospitals. Private
health insurance pays for 54% of palliative care in private hospitals of which
31% is for public patients, and the Department of Veterans’ Affairs funds 12%.
There are also clear differences in the main funding source by jurisdiction in
private hospitals. For example, the proportion of palliative care which is
designated for public patients and provided in private hospitals ranges from
less than 1% in Victoria to 61% in Western Australia.
the only 'specialist palliative care service in Australia delivering care to
patients and families who have private health insurance' also noted the
reluctance of private health insurers to participate in the provision of
palliative care are:
...resulting in patients needing palliative care being
transferred into the public sector at end of life, or the needs of patients and
families not being met at this time.
They went on to explain that:
This gap in services means that the privately insured patient
who receives active treatment for their cancer or other chronic illness from a
private specialist and private hospital, is not able to readily access
palliative care through the private sector. It is reasonable to assume that
privately insured patients generally have an expectation that their private
insurance will cover them through all aspects of their illness journey, and not
end when curative treatment is no longer appropriate. Some privately insured
patients may be able to access private inpatient palliative care, but are
missing out on opportunities for comprehensive palliative care in the home
because the current funding arrangements favour in-hospital care.
As a result, Cabrini recommended that the role of the private health
sector in providing comprehensive palliative care to privately insured patients
and families be the subject of further inquiry.
In its submission PCA went on to explain that '[w]ith appropriate
arrangements in place the private sector could play a useful role in providing
more choice and access, as well as diversifying the funding sources' for
palliative care. It suggested that the main impediments to the greater
participation of private health insurers in the provision of palliative care
- A fear of cost shifting where the public purse may have funded these
- Defining end stage palliative care.
- Assessing patient functionality and the capacity of carers.
- Allocating a budget.
- Managing the private‐public
mix of services and subsequent funding.
- Locating the required services.
The committee acknowledges that in the future demand for palliative care
services will increase as the population ages. As more Australians invest in
private health insurance, the committee calls on the private health sector and
private health insurers to contemplate the role they might play in helping meet
the growing demand for comprehensive palliative care.
The committee considers that further research into the potential role of
the private health care sector, including private health insurers, in providing
palliative care services is required and suggests that the federal government
initiate such a review.
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