Chapter 6 - Future directions for cancer care in Australia
6.1
This concluding chapter summarises the major issues examined
by the Inquiry as discussed in the report and reviews the actions that have
been proposed to improve access to and advance best practice cancer care in Australia.
The primary focus of this chapter will be on
the cancer journey as it progresses through a number of stages; though there
are also issues raised which apply at some or all stages of the journey, such
as the need for information and support, workforce shortages, data shortfalls
and access to best practice care for regional and Indigenous Australians. This
chapter should be read in conjunction with the summary
of recommendations.
6.2
The Committee heard that the Commonwealth, Cancer Institute
NSW, Victorian Department of Human Services and the Department of Health
WA are undertaking initiatives which will continue
our success in providing cancer treatment in Australia.
While it is apparent that institutions, organisations, practitioners, support
groups and consumer advocates are doing their best to provide and promote services
which realise the best outcomes for the cancer patient, there are still issues
needing to be resolved.
6.3
Though acknowledging Australia's
treatment record and the goodwill from all involved to improve the cancer patient's
journey, the Committee was concerned at the current gap between what is known
to be best practice and what is the reality for many cancer patients as told to
the Committee.
6.4
The needs of cancer patients for improved information
to make informed choices about conventional treatment and complementary therapies
and for better access to coordinated care and psychosocial support have been
well documented. Not only are these needs well known but there is evidence
available to show that better outcomes accrue when these needs are addressed. The
question therefore remains as to why cancer care in Australia
is still described as a 'lottery' for the many people who take that journey?
6.5
As described in many reports and by witnesses, the
Committee considers that Australia
is at a crossroads in cancer care and the direction in which to proceed has
general agreement. Indeed, many cancer patients are voting with their feet by
making their own enquiries in order to find health practitioners and
institutions which provide them with the care that is most appropriate to their
needs. The direction is clear and it just seems to be a matter of time before
the momentum of evidence and change, together with consumer advocacy, carries
us there.
6.6
While Australia
is doing well in cancer control across the continuum, improvements could be
made through the systematic implementation of best practice treatments for
people with cancer. The evidence from overseas witnesses from the USA
and UK, indicated
that Australia
is lagging behind current best practice especially in areas such as
multidisciplinary care and integrative medicine. The Committee sought advice
from these witnesses, who are all leaders in their fields, on how Australia
can learn from their experience to expedite the natural evolution and overcome
the barriers to best practice more quickly. As discussed through the report, this
information has been combined with recommendations from Australian witnesses and
findings from other reports, to provide the following plan to guide
improvements to the provision and delivery of care during all stages of the
cancer patient's journey. The plan needs to be read in conjunction with the
Committee's summary of recommendations.
Diagnosis and referral
Referral guidelines
6.7
From the very start of the cancer journey, witnesses
raised concerns that referrals were largely ad hoc. The Committee accepted that
the development of referral guidelines would provide GPs with the information
on who best to refer a patient to and would reassure patients that they are accessing
the best possible care. The Committee considers that it is vital to ensure
patients are referred in a timely manner to high quality treatment services. The
Committee noted that work is underway in a number of States to develop referral
pathways and recommended that Cancer Australia in conjunction with the States
and Territories develop appropriate referral pathways for the management of all
cancers.
Empowering cancer patients through
provision of information
An informed and empowered health consumer is critical to good
outcome of care.[363]
6.8
The Committee heard that people want to be more
involved in their health care and be able to make informed decisions, and that practitioners
must respect the fact that people want to be involved. Witnesses told the
Committee that they were concerned about the lack of information available for
both the general practitioner and the cancer patient at the diagnosis and
referral stage. Many patients want to be more involved in choosing their
specialist and want information to enable them to engage in an informed
dialogue with their GP about who would be best suited to treat them and what
their treatment options are. Supporting this view, Professor
Currow stated that:
As I reflect on the cancer journey, you have raised the
important issue of how do people win the lottery. At a whole-of system level,
we have a couple of options: one is to change the way we deliver health care;
the other, in which I believe we can invest substantially, is to have better
informed patients. That is to have accessible information specific to each
cancer available to people so that they can ensure that the care they are
getting is genuinely interdisciplinary...is timely and is credible. We need to
complement any change to the health system with ensuring that health consumers
themselves are adequately informed – not only the person with cancer because
the effect does not finish there, but the people around them: their family and
friends.[364]
6.9
This call for information has led to the publication of
a directory for breast cancer treatment and services in NSW which is very well
regarded. The Committee recommended Cancer Australia
assist with the coordination of a directory of cancer treatment services in each
State and Territory.
6.10
Witnesses told the Committee that from the outset many
of them had had little exposure to the health system before they or their
relative was diagnosed and they needed assistance to navigate their way through
their cancer journey. The Committee considers that in conjunction with more
information being made available through care co-ordinators, a common entry
point for information for people with cancer was required which would include
the development of a website and resource pack which consolidates and provides
people with information about various cancers, treatments, support groups and
advocacy groups. The Committee considers that the establishment of Cancer Australia
provides an opportunity to have an authoritative body that can facilitate
access to this kind of information so it is easily available and visible. The Committee
therefore recommended that Cancer Australia provide access to authoritative,
nationally consistent evidence based information on services, treatment
options, government assistance and links to appropriate support groups which
can be made available in different forms.
The need for support
6.11
Witnesses emphasised that they needed support right
from the time of diagnosis. Evidence has shown that emotional distress is very
common in cancer patients and that effective psychosocial support programs are
associated with an enhanced quality of life and longer survival. The Committee
heard that if a patient feels supported through their cancer journey they
comment less negatively on every other aspect of their life and care. The
Committee agreed that more options to provide psychosocial support should be
pursued and this is further discussed in the section on psychosocial care below.
Improving delivery of services and treatment options
Development of multidisciplinary
care
6.12
All witnesses acknowledged that a multidisciplinary
approach to cancer care is best practice. There is evidence to show better
patient outcomes in terms of survival and emotional well being. Despite this, evidence
to the Committee indicated that it is not being widely practiced in Australia.
This is due to a range of factors including the way in which services are
organised and resourced in different parts of Australia.
The Committee recognised that a range of approaches and models to
multidisciplinary care are required for different parts of Australia.
6.13
The Committee noted the 1994 House of Representatives
Community Affairs Committee Report on the Management and Treatment of Breast
Cancer which found that the management and treatment process for women with
breast cancer was fragmented and uncoordinated and recommended multidisciplinary
care as best practice for women with breast cancer. In 1995 the National Breast
Cancer Centre was established and has been a driving force in improving
outcomes for women with breast cancer, advancing multidisciplinary care and producing
clinical practice guidelines. It is argued that what was true for breast cancer
in 1994, could be seen as true about other cancers in 2005 and inspires the
question of why it is taking so long to apply the advances of the breast cancer
model to the management of other cancers.
Measures to increase the practice
of multidisciplinary care in Australia
6.14
The treatment of breast cancer provides the health
system and health providers with a working model of multidisciplinary care
which can be adapted for other cancers. The Committee commends the work undertaken
on the National Multidisciplinary Care
Demonstration Project which obtained information applicable to other
cancers and made recommendations on the implementation of MDC, and the Sustainability of Multidisciplinary Cancer
Care Study. There are, however, a number of systemic issues needing to be
addressed to progress the practice of multidisciplinary care in Australia
including those discussed below.
Multidisciplinary care needs to be
better supported by the health system
6.15
Witnesses told the Committee that a multidisciplinary
approach is not well supported by the health system and that practitioners have
to contend with inflexible funding models. The Committee heard that the current
structure of the Medical Benefits Schedule provides minimal financial incentive
for clinicians to be part of a multidisciplinary approach. This is even more
pronounced in the private system where some clinicians providing treatment to
private patients are not funded to participate in MDC meetings. The Committee considers
multidisciplinary care must be adequately and explicitly resourced by those
funding health services and recommended:
- adherence to clinical guidelines be included in
the accreditation process; and
- the enhancement of current MBS arrangements for
relevant multidisciplinary care team members.
Accreditation of cancer services
and credentialing of practitioners
6.16
It was strongly argued that two systemic changes are
required if Australia's
cancer treatment services are to continue to improve and meet the increasing
demand of the rising incidence of cancer in the Australian community. These are
accreditation of cancer services and credentialing of the health professionals
who work within them. It is accepted that these systems will take time to
introduce which makes it more important that their development is afforded a
high priority. The Committee considers that the accreditation of cancer
services and credentialing of practitioners is a fundamental priority to ensure
that multidisciplinary care is incorporated as a key component of best practice
care.
6.17
Work has already commenced on the development of an
accreditation framework and the Committee recommended that work should commence
on the development of a credentialing process as soon as possible. The
Committee also recommended that the practice of multidisciplinary care be
included as a criterion for assessment in an accreditation process. The
Committee notes that the support of the medical Colleges is fundamental to
progress both these issues and they were disappointed by the lack of input from
the professional Colleges to the inquiry.
A multidisciplinary team must
include non medical health providers
6.18
The issue of including non medical providers in a
multidisciplinary team goes to the heart of recognising that a diagnosis of cancer
provides the patient with not only physical challenges but practical and
emotional issues as well. The Committee accepts that a multidisciplinary team should
include not only providers of conventional medical treatment but also health
professionals providing psychosocial support and services. The composition of
this team would vary according to the medical and social needs of the patient
at any one time.
6.19
The Committee also recognises that there are health
practitioners who are able to assist cancer patients to better cope with the
side effects of conventional treatment, and who can provide an improved quality
of life and increase patient well being.
National adoption of clinical
guidelines
6.20
Over recent years, Australia
has produced a suite of clinical guidelines to support medical professionals,
health practitioners and patients on the cancer journey. There is evidence to
show that they are effective in improving the quality of clinical practice and
the outcomes of care. The Committee considers these to be an important,
evidence based resource, endorsed by the National Health and Medical Research
Council and that their use should be encouraged nationally using accreditation
as a vehicle. The Committee has recommended that the development of an
accreditation process should include the use of clinical guidelines and
encourages the professional Colleges to promote their use. Translating
guidelines into clinical practice and services in both the public and private
sectors was agreed by the Committee to be critically important.
Conclusion
6.21
Australia's
cancer treatment record is good but services could be considerably enhanced. The
introduction of well structured and well funded multidisciplinary care is of
vital importance to achieving good outcomes for cancer patients in Australia.
The Committee recognises that given the diversity of health care services operating
throughout Australia
and combined with its diverse geographical spread, it is not appropriate to
encourage a fixed approach to multidisciplinary care and has recommended a
flexible approach.
Improving care co-ordination
6.22
Witnesses reported experiencing fragmented care during
what was often a very complex journey. Evidence demonstrated that a care coordinator
has a very valuable role to play in ensuring continuity of care to deliver the
full benefits of the multidisciplinary model. The Committee noted that breast
care nurses provide a successful model from which to develop care coordinator
positions but acknowledged that the person fulfilling the role could vary
according to the location of the cancer patient and the availability of
services and staff.
Improving access to psychosocial
care
There tends to be a void in the area of meeting psychosocial
needs with the physical/tasks often being easier to address by healthcare
providers.[365]
6.23
Cancer affects every aspect of a person's life. It
affects the patient, family, friends and their physical, mental, emotional and
spiritual life. Surveys have found that over 50 per cent of cancer patients
feel that the practical and emotional consequences of dealing with cancer were
harder than the medical issues. The Committee noted that there is a need to
shift mindsets and understand that more and more individuals are going to be
living with cancer for longer. There is a need to treat the individual as a
whole and not just the disease.
6.24
The Committee also heard that psychosocial support is
as much part of multidisciplinary care as surgery, radiotherapy or
chemotherapy. Some patients will require more assistance than others, but the
Committee agreed that people should be able to access support to assist them
cope with issues when they need to and not only when they are in crisis. The
Committee recognised that psychosocial support should be given equal priority
with other aspects of care and be fully integrated with both diagnosis and
treatment. As part of developing multidisciplinary care it is essential that
immediate steps are taken to ensure that State and Territory health services
address providing psychosocial support for cancer patients, taking into account
the NHMRC approved Clinical practice
guidelines for the psychosocial care of adults with cancer. The Committee considered
that the recent changes to Medicare that allow five allied health consultations,
including psychological counselling within a registered care plan, need to be promoted
and evaluated.
The need for information during the
cancer journey
The most commonly mentioned unmet need is for information. The
top seven of the unmet needs from a list of about 30 or so in the
questionnaire, were for information and about 20 percent of people had unmet
information needs. I think a very big message from that is that there is still
a lot of work to be done in providing cancer patients with the information that
they need.[366]
6.25
As noted earlier, cancer patients told the Committee
that one of their biggest challenges was finding and accessing appropriate,
authoritative information. In addition to the need for information to make an
informed choice about their treatment and care at the commencement of their
journey, cancer patients also need information further along the cancer journey
about support groups, complementary therapies and other treatment options, and
government assistance. The Committee considered that as a part of their role, the
care coordinator should be a vital source of information for cancer patients
during their cancer journey. The Committee also considered that communication
skills training for health professionals was an issue that needed to be
addressed at the undergraduate and postgraduate levels and through the Colleges.
The needs of regional and
Indigenous Australians
6.26
Access to best practice treatment for regional and
Indigenous Australians is challenging. There is little information about how to
provide appropriate cancer care for Aboriginal and Torres Strait Islander
people. The Committee heard many suggestions on how to provide better services,
such as outreach services, developing links with centres of expertise and
better access to tele and video conferencing, which they supported. The
Committee understands that for logistical and other reasons not all services
will be available locally for regional and Indigenous Australians. A major
concern raised with the Committee was the disparity in the State and Territory travel
assistance schemes. The Committee was advised of and supported the findings of other
reviews that there needs to be a standardisation across jurisdictions. For
Indigenous Australians the Committee noted the need for culturally appropriate
care and recommended Cancer Australia,
in consultation with Indigenous people, auspice work to improve access to
cancer screening, diagnosis and treatment.
Complementary therapies
6.27
Evidence presented to the Committee showed that a high
rate of cancer patients and Australians generally access complementary
therapies, though many of them do not inform their medical practitioner as they
expect scepticism and little support from them. The Committee heard many
stories of this great divide between conventional and complementary medicine
and therapies.
...the thing that sticks in my mind is the difficulty in finding
help, support and wishing like crazy that the doctors and the alternative
medicines could see each others values instead of being against each other. I
am sure it has a lot to do with fear and lack of knowledge but for the patient
it causes even more stress and anguish.[367]
6.28
Clinicians are rightly wary of therapies and products
making claims to cure cancer, but medical professionals in Australia
seem to be particularly wary of even evidence based complementary therapies which
have been embraced overseas. Overseas witnesses told the Committee that about
90 per cent of cancer treatment centres in the USA
and UK offer
some form of complementary therapies, even if it is on a small scale. Numerous
witnesses argued that this situation disadvantages the many cancer patients
being treated in Australia.
6.29
The Committee heard from institutions such as the Peter
MacCallum Cancer Centre and the Brownes Cancer Centre where complementary
therapies are offered. The programs offered by these centres seem to be the
exception rather than the rule and even in those settings, the offering of complementary
therapies does not constitute a fully integrated service.
6.30
The Committee agrees that complementary therapies must
be evidence based and adhere to the same rules as conventional medical treatments.
As noted by Professor Zalcberg
from the Peter MacCallum
Cancer Centre:
The important thing for people looking after patients with
cancer to remember is that they are our mothers, our sisters and our wives.
Like everybody else, there is nothing we do not want to give to people that we
think works, but we certainly do not want people to go off and have treatments
that we think are a waste of time and their money and, in fact, sometimes
denies them the actual treatment that does work. So there is not any a priori
reason why we do not want to move forward here, but the rules have to apply to
everybody for the public's sake.[368]
6.31
However, the Committee acknowledges that there is a
case for therapies which intrinsically enhance quality of life, such as meditation
and massage, to be more readily accepted.
6.32
The Committee considered that a first step to greater
acceptance of complementary therapies in Australia
should be the clarification of the terms used to ensure that health
practitioners speak the same language. The Committee suggested that
complementary medicines and therapies be defined as those which are used in
conjunction with conventional treatments to assist with, for example, the
alleviation of side-effects. Alternative medicines and therapies are those
which would be used instead of conventional treatments or whose affects are as
yet unproven.
The need for more information on
complementary therapies
6.33
The Committee heard that cancer patients want access to
authoritative information on complementary therapies so they can discuss
possible benefits with their medical practitioners and make informed decisions
about their use. Given the large numbers of Australians using complementary
therapies, the Committee considers that government has a duty of care to provide
such authoritative information on an ongoing basis and suggested Cancer Australia
as the vehicle.
6.34
The ready availability of information internationally presents
an immediate opportunity for Australia
to provide patients and carers with authoritative information to help them make
informed decisions about the utilisation of complementary and alternative
therapies and products. This would go some way towards addressing government's
duty of care and responsibilities in this sector.
6.35
The Committee noted the intense interest in the inquiry
from organisations representing complementary therapies. It considers that the
formation of an umbrella organisation which would be able to represent the
sector to government and discuss such issues as standards and regulation is a
necessary step towards greater visibility and acceptance of complementary
therapies.
6.36
The Committee was concerned that, in Australia,
the utilisation and wide acceptance of complementary therapies in order to
achieve a better quality of life, relief from the side-effects of conventional
treatments and possibly prolonged survival is demonstrably behind the situation
in the USA, UK
and some European countries. The Committee considers that a critical factor is
the lack of authoritative information for medical professionals and cancer
patients. As emphasised by witnesses, cancer patients need to use every
possible resource to get the best results and it would appear that Australia's
conventional treatment sector is reluctant to adopt all that is best for
patients from the range of complementary therapies that are available.
Towards Integrative Medicine
6.37
The Committee heard evidence about overseas hospitals such
as the Memorial Sloan-Kettering Cancer Center that are using integrative
medicine which combines the best evidence based treatments from conventional
medicine with the best evidence based therapies from complementary practice to
treat not only the disease but the whole person. The Committee supports the
following suggestions from witnesses to advance the acceptance of complementary
therapies in Australia:
- Therapies should be introduced progressively to
facilitate acceptance;
- Developing a shared language is important to
facilitate communication between conventional and complementary therapists;
- There is a need to engage local champions with a
solid orthodox background who are willing to be actively supportive;
- Australia should make greater use of and adapt
information from overseas;
- Complementary services should be located near or
next to conventional treatment centres; and
- Education, training and information for
conventional medical practitioners has an important role to break down
barriers.
The need for more investment in research
into complementary therapies
6.38
Witnesses told the Committee that the vast majority of
research on complementary therapies has been conducted overseas, especially in
the USA with
significant funding made available from government. To address the research
shortfall in Australia
the Committee recommended a dedicated funding stream for research into complementary
therapies. The Committee also considers that there is an opportunity for Australia
to access and utilise the research conducted overseas as a first step to
providing greater information to consumers.
6.39
The Committee also heard about the difficulties
experienced by researchers in the sector to obtain funding from the NHMRC. This
was acknowledged by the NHMRC which suggested providing mentoring and advice
from experienced NHMRC recipients to improve the quality of applications. The
Committee agreed with this strategy and recommended that representatives who
have a background in complementary therapy be involved in the assessment of
research applications received by the NHMRC. The Committee agreed with the
recommendation of the Expert Committee on Complementary Medicines in the Health
System to establish a working group to identify research needs. The Committee further
recommended that this group establish a mentoring program and develop a
strategy to coordinate and prioritise research into complementary research in Australia.
Palliative care
6.40
The increasing numbers of people with cancer and who
are living longer with cancer means that long term support and palliative care
is an area which will require continuing attention. Witnesses noted that as
this need continues to grow, planning for associated resources needs to be
undertaken. The Committee recognised that the provision of good palliative care
affects not only the cancer patient but the carer as well.
Conclusion
6.41
This report provides information on current practices and
policies in the area of cancer care in Australia.
Firstly, taking a broad perspective, the Committee heard that with the
increasing numbers of cancer patients, there is a need to ensure the most
efficient and effective use of scarce resources. As described by one witness:
I get very frustrated by the fact that we could co-ordinate our
few resources and our relatively few experts in this country into a more
co-ordinated approach to developing and delivering information, and developing
and delivering care. I think there is a lot of waste in the current situation.[369]
6.42
The Committee noted that there are many organisations
in the cancer sector, some of them sustained by government funds, which appear
to be either doing the same thing or competing with each other. It is
recognised that this is partly caused by the different types of cancers,
especially in the non government sector. However, in the best interests of
efficiency and better use of funds, it is important that some re-organisation
takes place and this is discussed in chapter 1.
6.43
Looking at cancer treatment and services, it is evident
to the Committee that while many improvements in the area of cancer treatment have
been made, resulting in better survival outcomes and more people living with
cancer for longer, there are areas of cancer treatment services which can be
significantly improved.
6.44
From the evidence received by the Committee it is clear
that many cancer patients still face fragmented and uncoordinated care along
their cancer journey. Many witnesses spoke of their distress when referred from
specialist to specialist and left to navigate their own way through the health
system. This is particularly an issue for cancer patients living in rural and
regional areas who have problems accessing specialist services and also face
higher travel costs. This problem is compounded for Indigenous Australians who
not only face the difficulties of regional and rural Australians but also
cultural and linguistic barriers. Improving access to multidisciplinary care
and greater co-ordination of care was discussed in chapter 2.
6.45
The Committee also found that there is a great unmet need
for psychosocial support for cancer patients. For those who have cancer the
impact is multifaceted. There are not only physical challenges but also
emotional and practical issues to be dealt with. It is therefore imperative
that cancer patients receive optimal psychosocial support as they need it. Improving
access to psychosocial support is discussed in chapter 2.
6.46
From evidence received by the Committee it is clear
that Australia
is behind best practice in the USA
and UK, where
integrative medicine is practiced which combines the best of evidence based conventional
treatment and the best of evidence based complementary therapies. Evidence also
shows that many Australians, and many with cancer, are using complementary
therapies but do not discuss this with their medical practitioners. Witnesses
spoke of their desire for authoritative information on complementary therapies
and the Committee considers that government has a duty of care to provide this
using Cancer Australia
as the vehicle.
6.47
The Committee considers that more information is needed
not only for cancer patients but also medical practitioners and that research
conducted overseas provides an opportunity to access and adapt the information
for Australia.
The Committee would also like to see greater organisation of and collaboration
in the sector, including the formation of a national body representing complementary
therapies that can interact with government and guide development of issues such
as regulation. The Committee also acknowledged the need for further research in
the sector and recommended a dedicated funding stream, with more collaboration
and assistance from the NHMRC.
6.48
The Committee considers it is evident that without the
presence of motivated consumer groups much of what has been achieved would
either not have happened or still be in a developmental phase. This is well
illustrated in the treatment and support of breast cancer patients. It is
important that consumers and consumer organisations continue to be empowered in
order to help drive change.
6.49
The Committee believes that the recommendations and
plan that it has proposed will greatly assist the delivery of services and
options for the treatment for persons diagnosed with cancer as they travel the
cancer journey. The successful outcome of these proposals will hopefully be a
more informed population that leads to an improved quality of life and
prolonged survival time for cancer patients.
Senator Gavin Marshall
Chair
June 2005
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