This chapter will examine the valuable role played by carers in the
palliative care environment, the support currently offered to them from
government and other sources, as well as how existing services such as respite
care, counselling, bereavement support and information services could be
improved. The chapter will also consider some issues around recognising the
work of carers in palliative care funding models.
The valuable role of carers
Carers of people receiving palliative care make up a significant part of
the palliative care workforce. They are in a sense separated from the
professional palliative care workforce because they are often unpaid, untrained
volunteers who are also usually close family members of patients. The work
undertaken by carers goes largely unseen and unrewarded by society. The
committee heard that this lack of recognition of the vital role of carers was
reflected in the absence of well-coordinated support and funding arrangements
which would be beneficial to carers and the challenges they face.
Palliative Care Australia noted that:
Regardless of the place of death, it is estimated that up to
90% of people in the terminal phase of a life threatening illness spend the
majority of their time at home supported by a carer.
The Eastern Palliative Care Association (EPC) described carers as 'the
lifeblood of community palliative care'. Ms Jeannette Moody, Chief Executive
Officer of the EPC, told the committee:
Without carers, the care of the person with a terminal
illness cannot be managed at home. Carers can be partners, family, friends,
neighbours, church groups or local tennis clubs—in fact, any person you see as
being able to provide support, help and assistance at your time of need. As I
have stated in my submission, care for the carer is critical to people being
able to die in their place of choice...
Many of our carers, particularly co-resident carers, are
older themselves. If we have an 80-year-old client who has a terminal condition
and lives with a partner, that partner is likely to be pretty much the same
age. The carers themselves may have a chronic illness. For Eastern Palliative
Care, 60 per cent of our clients have a co-resident carer and another 10 per
cent have a non-resident carer. Just under 26 per cent of our clients have no
carer whatsoever, and that is a huge proportion and a great worry for us. The
options available to these clients are very limited, unless they can afford to
pay a live-in carer.
Noting that a lot of palliative care and aged care is provided by a non-remunerated
older workforce, Mr Trevor Carr, Chief Executive of the Victorian Healthcare
Association, stated there would be some challenges into the future around
As we all live longer and live longer more healthily we are
also more likely to work longer ourselves, so that is likely to create a
deferral of opportunity for people to engage in volunteerism. Some of these
elements certainly need to be taken into consideration in looking at where the
hours of care are provided to these sorts of services and who is providing it.
The committee notes that an ageing workforce should not be seen as only
posing challenges, but also opportunities to harness the wisdom and experience
of older people who take on the role of carer.
Ms Moody emphasised that carers themselves undergo a great deal of
change in their own lives as part of the experience of caring for someone with
a terminal illness. Carers experience:
...the reality that the person they care for is going to die,
the dynamics of having to provide 24-hour care and the sense of loss and grief
that they are experiencing.
Carers must be supported by all levels of the community and
government. The need for registered nurse respite is critical to assisting
carers to manage as death comes closer. Physical care at end of life can be
very complex, with medications, turning and continence issues. Carers need to
be able to access out-of-hours support and assistance as they need. Eastern
Palliative Care has out-of-hours services, triage and visits by nurses as
needed. We encourage clients and carers to ring if they have any inquiries—we
actually encourage them. We do not say to them, 'Only use us as an emergency
service;' we actually encourage them. The more we can keep them comfortable at
home, the better for them.
The challenges faced by carers
Carers are usually individual family members, an caring is a role frequently
taken on by a partner, parent or child. As carers shoulder these
responsibilities, pressure and exhaustion can easily build up and affect both
the carer and the person being cared for, despite carers' genuine preference
and desire to care for the person themselves.
Ms Brynnie Goodwill, Chief Executive Officer of LifeCircle Australia,
noted that knowledge of how to support people with palliative care needs used
to be more prevalent throughout whole communities:
There are still communities where this is normal course of
business—someone gets sick and everybody rotates and looks after them. People
know where to turn to get support from the community, whether it is practical
like who can mow the lawns, because everyone is too busy, or who can do the
grocery shopping or which palliative care, if there were a palliative care
helping, who could help out to do this sort of looking after somebody at the
very end and provide support.
The EPC noted that the presence of carers was crucial to be able to
supplement specialist palliative care services. For example, regarding pain
relief medication, the EPC explained:
We will not visit and provide injections for medications if
there is no-one to stay with the client for at least four hours after that
medication. We cannot leave a client unsupervised during this time and we do
not have the resources to stay with them. So if they do not have a carer we cannot
provide that service.
The committee also heard that people generally still want to provide
care at home but that there are also caveats on the capability to do this, such
as practical limitations:
One of the caveats is that between seven and nine per cent of
people cannot identify a primary care giver—not theoretically but as they face
a life-limiting illness. Secondly, many people say, 'I'm really happy to look
after you at home while ever I can,' or, 'I'm happy to look after you at home,
but if you become unconscious that's just not going to be a time that I can
continue that care.' The third caveat is the practical issues of home based
Professor David Currow, Professor of Palliative and Support Services at
Flinders University, emphasised to the committee that the experience of caring
for someone with a terminal illness should not be 'romanticised':
For a spouse to look after their partner and have to come
home to that same double bed that night as the only place in the house to sleep
when someone has died there earlier in the day is not to be underestimated. The
number of hats that any person can wear at any one time is finite. To be nurse,
cook, cleaner, bottle washer and everything else and then try to be friend,
confidant and lover is just not possible for many people. In fact, the
transition to inpatient care at times allows for conversations that just have
been blocked out by the busyness of 24-hour care, seven days a week.
Professor Currow also told the committee that the ageing population
would pose challenges for the provision of home-based care. In the next fifty
years, there will be many more people living alone who simply may not have a
person to take on the role of primary care giver if required. He noted that
having someone who identifies as a primary care giver is the most important
predictor of home-based care.
The committee also discussed with Professor Currow the issue of carers'
expectations when faced with the reality and difficulty of providing care:
Senator SMITH: ...I thought that your comment at the
beginning about romanticising palliative care at home was very powerful.
Senator BOYCE: I do not imagine that anyone who has
ever done it has romanticised it, though.
Prof. Currow: No. But when we poll people in Macquarie
Street everyone says that they want to die at home. What is the reality of
that? We have looked at it longitudinally. We have watched people's decisions
change. It is for the practical stuff. It is not that services are not
Senator BOYCE: Bed pans.
CHAIR: If you ask people their opinion about caring
for someone dying at home, do you get different responses?
Prof. Currow: We ask them quite separately. We ask the
person with the life-limiting illness. At a separate time, out of earshot, we
ask the carer. The answers do not always line up. It is not as though the
patient is always going to say, 'Yes, I wanted to stay at home,' and the carer
is always going to say, 'Yes, I want to look after this person at home.' It is
far more complex than that. As we think about policy, there is a tendency at
the moment to say that home death is a good death while institutional death is
a bad death. That changes so easily into the idea of us having to put funding
models in place to enable that. That is a huge cost shift.
Professor Katherine Clark of Catholic Health Australia observed the
urgent need for appropriate palliative care services to encompass the carer's
needs at the same time as those of the patient. She noted that not providing
adequate support to carers has 'public health implications for bereaved
Australians' and that 'there is significant morbidity associated with being a
carer'. Professor Clark also stated that the carer's role is one that 'a number
of people who have been carers are choosing not to take on again, because the
implications are so significant'.
The Cancer Council NSW and LifeCircle's submission also noted that
caregiving is often associated with a negative impact on financial security and
wellbeing, as the primary caring role reduces a person's chances of being
employed, or they may have to work fewer hours or be employed in a lower paid
job. The submission also noted that over half of primary carers report a
government pension or allowance as their principal source of income.
Associate Professor Rohan Vora, President of Palliative Care Queensland,
acknowledged the risks of stress, depression and burn-out for carers. He noted
that for many ageing carers, a key question that the health system faces is:
'At what stage does the other person become a patient, and do they really have
the ability to care?'
Carers NSW summed up the challenges that carers
encountered and also highlighted the importance of recognising and
acknowledging in practical ways the rights and unique role of carers:
The role of caring for a person with a life limiting illness
and providing care for someone nearing end of life can be both deeply rewarding
and extremely challenging, and carers require support themselves in order to
sustain this role. Carers deserve recognition for their work and respect for
their knowledge and experience.
Carer recognition is especially important in palliative care,
as often carers of people who are dying feel disempowered and undervalued in
their role as a carer by the health services and professionals they are dealing
...The Commonwealth Carer Recognition Act 2010 and the
National Carer Strategy provide a national framework for improving the rights
and recognition of carers in Australia. In line with the principles of the Statement
for Australia’s Carers, carers ‘should be considered as partners with other
care providers in the provision of care, acknowledging the unique knowledge and
experience of carers.’ With consent from
the patient, services and health professionals must work in partnership with
carers in order to ensure the best possible outcomes for the patient, must
respect the relationship between carers and the persons requiring care, and
must recognise the unique knowledge of carers.
National Carer Strategy and other government support for carers
The National Carer Strategy, launched in August 2011, sets out
the Commonwealth Government's plans to provide better support for carers and
included the announcement of $60 million in new funding over four years. The Strategy
has the support of all state and territory governments. 'Carers'
are defined under the Strategy as 'people who provide personal care, support
and assistance to people with a disability, medical condition (including
terminal or chronic illness), mental illness, or frailty due to age'.
Some of the new funding announced under the National Carer Strategy will
support the following initiatives:
- $10.3 million to continue the Carer Adjustment
Payment, a one-off payment for families who, following a catastrophic event
involving a child aged 0-6 years, need additional support to cater to the needs
of their child;
- $2.9 million to improve access to the Carer
Supplement for carers who are working when the Supplement is paid in July each
year, which will help carers to maintain paid employment;
- $2.1 million to ensure fairer access to Bereavement
Payment, which will provide some assistance to carers receiving Carer Allowance
and an income support payment at the difficult time following the death of the
person they are caring for; and
- $1.6 million for a national and targeted campaign
to raise awareness of the role of carers.
The Commonwealth Government also noted its support for Australia's
carers through some of the initiatives set out below:
- Australia's first national Carer Recognition
- increases to the Carer Payment delivered in 2009,
now worth $128 extra per fortnight for singles on the maximum rate and $116
extra for couples combined on the maximum rate;
- a permanent $600 annual Carers Supplement; and
- a simpler and fairer assessment process for Carer
Payment (child) and Carer Allowance (child).
As part of its aged care support package announced
in April 2012, the Commonwealth also committed $54.8 million to help carers
access respite and other support.
It appears that the support for carers announced in this package covers carers
of people who are over 65 or who have a disability. This may include people in
these groups who have terminal or life-limiting illnesses and who may be
receiving palliative care.
Palliative Care Victoria's submission also outlined
to the committee the Victorian Government's support for carers:
In the 2011 Victorian Budget, the $34.4 million in new
funding allocated over 4 years included $500,000 additional funds to be added
to existing flexible funding to support the specific needs of carers with costs
of caring such as respite, equipment, and other out-of pocket caring expenses.
The funding also covers improved after-hours support for carers across all
regions, drawing on the findings of several successful regional pilots and
feedback from carers on the need for improved access to support outside usual
Palliative Care Australia's submission made comments regarding
Commonwealth, state and territory support for carers, noting that the National
Carer Strategy is:
...an integral part of the
Australian Government’s broader social inclusion agenda and it sits alongside
and complements the National Disability Strategy. In conjunction with the Carer
Recognition Act 2010, it forms part of the Australian Government’s National
Carer Recognition Framework. Within the National Carer Strategy, carers include
family members, friends, relatives, siblings or neighbours, grandparents or
foster carers providing care to a child with disability, medical condition
(including terminal or chronic illness) or mental illness are included as
carers. Most states and territories also have carer recognition legislation.
There is still much to be done to improve access to timely
and appropriate information and support for carers by the Commonwealth and
State/Territory Governments. For the most part, the strategies have been
identified and articulated; the priority now is for adequate resourcing so that
they can be implemented effectively. It is important that implementation is
responsive to the diversity of our communities, including cultural and
linguistic differences, rural and remote locations and special needs.
The Australian Government needs to ensure that the National
Carer Strategy, the National Palliative Care Strategy 2010 and the National
Disability Strategy are resourced so that the priorities to improve information
and support for carers are addressed. This will impact on the sustainability of
community based, out‐of‐hospital models of
care, which align with most people’s preferences for place of death and more
effective use of health resources.
Other support services for carers
The committee heard that carers of people with palliative care needs
often themselves require specific assistance and support while undertaking
their caring role. Different forms of support can involve respite care as well
as information, education and telephone helplines. Witnesses called for
improved support services for carers and families including: better access to
counselling and bereavement support; additional respite support for families of
children, young adults and older people with terminal illnesses; funded
volunteer support programs; and high-quality training for people working in
palliative care as volunteers.
Respite services for carers
Many carers benefit from access to respite care as they are afforded a
break from their caring responsibilities. This can involve 'in-home respite'
where the carer may be 'relieved' of duties by a registered nurse, or overnight
stays for the carer over one or a number of days in a place outside of the
home, while alternative care arrangements are provided for the patient. The
committee heard that the availability of more respite services would help to
'reduce carers' long-term stress'.
The urgent need for respite to be available to carers was described by
Ms Jeanette Moody, Chief Executive Officer of the Eastern Palliative Care
Association. She noted that professional support which allowed the carer to
rest and recover was essential and often critically important for issues like
Often carers are exhausted; they just cannot go on. A client
may need care every one to two hours; there is no rest for the carer. The carer
needs to be relieved to have a rest knowing that looking after the client is a
professional who can particularly manage medications. Often in palliative care
we use medications at a very high level. It is not appropriate for a
non-trained staff member to look after the client in this condition. In some
states trained nurses are available for up to six nights per client to support
the carer. If this was available across Australia, I am sure a number of
clients would be able to be supported to die at home much more than currently.
Ms Moody also told the committee that sometimes families and carers need
extra support during the very last few days of their loved one's life:
Sometimes that last little bit families just cannot cope
with, and that is a lot to do with the exhaustion I was talking about. If we
could have access to respite right up to the very end, I really seriously
believe that the family's journey would be easier, the carer's journey would be
easier and we would be able to have more people dying in the community.
The availability of Home and Community Care (HACC) services, sometimes
believed to be only for patients themselves, is critically important for
carers. Professor Jane Phillips, Professor of Palliative Nursing at the
University of Notre Dame and St Vincent's Sacred Heart, Sydney, observed that
palliative care policy does not necessarily articulate that 'people can only
stay at home with an invisible network of people supporting them to remain
there. That is unpaid carers, augmented with paid carers'.
For example, Mr Gary Coleman, whose partner, Ms Kim McCartney, has a
terminal brain tumour, told the committee that through Ballarat Hospice there
were trained carers available to take over from him if he needed a break from
his caring role:
Mr Coleman: ...Nurses give us a call and come around once a
week just to help with any medical questions or issues we might have. Everybody
has been really good. We go and see the doctors in Ballarat Base Public
Hospital, and, because we have been doing it for so long, they are almost part
of the family. So it is all good there. Kim is now doing treatment up in
Melbourne, and they are terrific up there. They give us all support. Whenever
we ask them something, they have answers for us or, if they do not, they find
Senator MOORE: Do you feel as though the service is
there for you as much as for Kim?
Mr Coleman: Yes, I do...When the nurses come around they
always ask me how I am going and whether I need any respite. They say, 'If you
want half a day off, we'll get a nurse to come around and look after Kim for
you.' They are great.
The EPC noted that respite 'enables carers to stay focused' and that
because a carer has usually been with the sick person for such a long time,
they are best suited to remain as the carer 'as long as they can get backup
support'. Organisations like the EPC provide specialist support, understanding
and information which helps the patient stay at home for much longer.
The Commonwealth Government is providing $1.1 billion over five
years for the National Respite for Carers program. A network of Commonwealth
Respite and Carelink Centres, which are run by a variety of community
organisations in metropolitan, rural and remote regions across Australia,
assist carers by offering a single contact point for assistance to organise,
purchase or manage respite assistance packages for carers.
Carers NSW commented that waiting for respite assistance packages
to become available was sometimes difficult:
In some cases patients and carers have to wait until a care
package becomes available, which could take weeks or months. One service
provider explained to Carers NSW how patients and families often struggled to
access the support that they had been assessed as eligible to receive due to
the limited number of care packages available.
Respite for parents
Mr Richard Burnet, parent and carer of two children with terminal
illnesses, appeared before the committee. He stressed the real need for respite
care to be available for parents in his situation across all states and
territories, acknowledging the very good existing work of Very Special Kids,
who run a children's hospice in Victoria and provide family and sibling support,
and the work of Bear Cottage at Westmead Children's Hospital NSW.
Regarding the respite services offered by Very Special Kids, Mr Burnet said:
I do not know what other parents would do when they
desperately need respite, although I do know what you would have to do: you
would probably have to pay for a live-in carer or somebody like that to come
and stay at your house while you go away. That is if you can afford it. With
Very Special Kids it is probably $800 or $900 a night, as the equivalent cost,
to send a child there where they are paying for having medical staff handy—and
that is not cheap. They do a great job, but their share of voice in the
community is in many ways lost by the breast cancers of the world or the things
that are much more prevalent. So they find it hard to get cut-through to get
the support from not only the community but also from the government.
He praised the services offered by Very Special Kids as helping to ease
the caring responsibilities of him and his wife:
Because of their medication and feeding needs, we cannot
leave them with family when we need to take a break, so Very Special Kids give
us the comfort we need that the boys will be more than looked after while we
are away and they will be genuinely loved. A full night's sleep is becoming
increasingly rare as Sebastian needs to be turned and often wakes up in pain,
and when Charlie gets worse it will be pretty tough, so taking a break is
really important for our sanity and also for our marriage.
Other support services for carers
The committee heard from a number of organisations whose role is to
These include LifeCircle and the Amaranth Foundation who gave evidence at
public hearings. LifeCircle is a volunteer-based counselling and support
organisation that is funded through organisational and individual donations and
Amaranth Foundation provides 'support and assistance to people living in rural
communities, who are living with serious and advanced life limiting diseases'.
It has received a number of Commonwealth grants that have funded some of its
LifeCircle explained that its primary role is to support carers of
people who are terminally ill, as well as to support the family and community
more broadly. Its services include a mentoring program, telephone counselling,
information events and an annual conference. Its submission highlighted a
number of challenges faced by carers, such as poor access to support services
including 24-hour support; the need for increased access to respite care and
other types of in-home support; and bereavement support.
LifeCircle's submission also provided data about difficulties faced by carers
in NSW in getting access to in-home support through Home and Community Care
Ms Brynnie Goodwill, Chief Executive Officer of LifeCircle, explained
that their support of the carer does not abruptly end following the patient’s
death but continues on for 13 months
(past the first anniversary of death). Mentors stay involved, providing
As you would know if you have had someone near you pass away,
right after the funeral everything drops off. People go back home and families
reconvene in their own circles. So the mentor stays involved all the way
through. The mentor does not provide everything. They are not a trained
counsellor. They may say: 'Gee, maybe it's time to see a bereavement
counsellor. I can take you this far.' They will continue to look for issues and
spot how the carer can best be supported through the transition period, and
often carers and mentors stay connected long afterwards.
LifeCircle explained how the hospital system is increasingly being put
under pressure as the population ages and that carers should be offered better
support to enable elderly and dying people to remain in their homes or in
high-care facilities where family and carers can be close by. Ms Goodwill
So we are saying that if the healthcare system of hospitals
is not going to be able to cope from a practical point of view and a financial
point of view, where are people going to die, how are they going to be cared
for? What LifeCircle is endeavouring to do, with tremendous support from the
Cancer Council, is to actually make it possible for communities to re-engage in
this whole process so that people can die at home. It could be in a retirement
village, it could be in high care facility, but they have community around them
and the tools and resources to be able to help that happen. With our increasing
ageing population at this point it is probably a pretty realistic place to go,
and other developed countries around the world are beginning to look at these
models, especially the UK.
...Again, it has been identified in report after report that it
is the carer who is the material piece in this picture—that, if the carer has
support, stress, burnout and all of that is reduced, their access to
information services changes and they are able to utilise the dollars spent in
the healthcare system much more effectively. So it is creating that model that
actually allows the interface between community and a healthcare model that
will help provide for our ageing and our dying population at whatever age.
Ms Goodwill also explained how LifeCircle supports carers in what
traditionally was a role supported by the wider community and how its telephone
counsellors will speak to anyone affected by a patient's illness:
They will talk to anyone and help support them through what
is happening—provide personal support, practical ideas, be an independent
sounding board, someone who [has] no skin in the game. They are an independent
sounding board. And they will also help you link up with local services.
The mentoring service provided by LifeCircle was spoken of highly by Mrs
Oxana Paschuk-Johnson who cared for her mother who had motor neurone disease:
They matched me up with someone called Caroline, who had been
through a similar process to me. She understood. Her mum had already passed
away. In fact, all LifeCircle mentors have been through this experience. It is
something that they care passionately about and it is something that they want
to give back to other people. I saw Caroline walk into the coffee shop. I took
one look at her and I knew it was going to be a really good, really special
She helped me mentally, physically, emotionally and
spiritually. And probably one of the most important ways she helped me with all
that was through information that I could not get my hands on from anybody. At
the fantastic place where my mum was, at the war veterans home, she got great
care. I kept asking, when it was really towards the end of mum's life, 'What's
happening? How come mum is like this? Should we send her to hospital? How come
she can't breathe properly?' I asked these questions to my mentor and she said,
'Oxana, I'm going to send you a brochure about the carer's last farewell.' She
gave me this document and it told me everything I needed to know. It told you
what would happen with your loved one eight months out from when they pass
away; what to expect; what not to worry about. It told you how to make that a
good experience; what happens four weeks out and the differences in your loved
one. It told you what not to worry about two weeks in, one week in, a few days,
a few hours, and right up to the time they pass away.
Because I am an only child every time my mum sneezed I would
worry. After being with my mentor—I could call her any time: text, phone or in
person, it did not matter—I could stop worrying about what was happening with
mum. I could just enjoy being with her and saying goodbye to her. It was
precious. It was probably one of the best experiences I have had with my mother
in all the years that I have known her. I know she loved me, but this was
special. LifeCircle and Caroline—she was totally a volunteer, did not know me
from a bar of soap—gave me one of the best experiences.
The committee heard from the Amaranth Foundation and its Director, Mr
Gregory Santamaria, who spoke to the committee about his experience of being a
five-year home carer (with his family) for his father who passed away from
cancer. He described the blockages and 'miscommunication' that carers
encountered within the health system:
That whole five-year journey lacked support. We do not have
the disease, but we have the mental anguish that comes with dealing with the
vast array of services that are available. Don't get me wrong: the department
of health funds an enormous number of services, but it is very inconsistent. It
is dictated too much by GPs and there is a lot of miscommunication between your
specialist all the way down to a case manager. We found that the case managers
worked for the family or tried their best to work for the family, but the
blockage was at the GP and specialist level.
Mr Santamaria told the committee that the Amaranth Foundation's model of
support is based on having essential information being given to carers. He
described carers as having different needs to the patient and a different focus
from the clinicians who care for the patient:
You are not given information to assist what you are trying
to deal with, which is not the disease; it is the person. The eye is on the
disease for the clinicians, but for carers the eye is on the person. That is a
fundamental difference in the way we tried to access palliative care services.
I must say that, for an educated family, we were very, very unsuccessful.
Mrs Julianne Whyte, Chief Executive Officer of the Amaranth Foundation,
emphasised that support for the carer through coordination with the patient's
GP was critical, especially recognition of any of the carer's mental health
As part of [the Amaranth Foundation's] responsibilities to
Medicare we often have to write to the GP. We have to state what some of the
issues are and on many occasions we have said that perhaps the carer could do
with another mental health referral, so that in the bereavement process they
can access 10 psychological based therapeutic approaches.
Mrs Whyte also explained the support given to the carer in terms of
'bereavement training'. The Amaranth Foundation starts family conversations
around bonding, grief and loss. They 'normalise the conversations' about death
and after death has occurred, follow-up support is provided.
Information for carers
The committee notes that one of the stated priorities in the National
Carer Strategy is that carers should have access to appropriate and timely
information which makes it easier for them to get support.
The Palliative Care Outcomes Collaboration (PCOC) highlighted the
website, which is funded by the Department of Health and Ageing, and is a
'one-stop web-based resource' which provides evidence-based information on all
aspects of palliative care for clinicians, researchers, educators, students,
health professionals, carers, families and patients. For carers specifically it
includes information on finding support and self-care.
The PCOC's submission described CareSearch as:
...an online resource providing health professionals and
patients, their carers and families with access to palliative care information
and evidence. Evidence is important in quality improvement and change
management as it can help services learn about what has been shown to be
The Commonwealth also funds the National Carer Counselling Program,
delivered through the Network of Carer Associations around Australia, which
offers short-term counselling and emotional and psychological support for
The committee heard however that the manner in which some patients,
their carers and families are receiving information is not appropriate:
I was diagnosed with a terminal, malignant, incurable brain
tumour in December 2008 and went down to the Royal Melbourne Hospital to have
it removed. On leaving the Royal Melbourne, we brought home, I think, three or
four show bags full of brochures on how to deal with chemotherapy, how to do
this and how to do other things...
The second time ...they were sending us home and I dug my heels
in this time. I said, 'I'm not going home, because last time you sent us home
it was a nightmare. You sent us home with show bags full of brochures that I
didn't want to look at. We had no idea where we were going, what we were doing,
what would happen next and how we were going to deal with this.'
The submission from the Cancer Council NSW and LifeCircle called for
better bereavement support services, including more intensive support for those
considered 'at risk of complicated bereavement reactions'.
It cited the findings of a survey of palliative care bereavement services:
An Australian survey of palliative care bereavement services,
conducted in 2007, found that the most common obstacles to bereavement service
delivery were lack of sufficient staff time (73%), funding pressures (44%),
lack of personnel (35%), lack of organisational support of bereavement services
(29%). The work of bereavement care was commonly co-ordinated by a nurse, often
on top of his/her other duties and in some cases it was co-ordinated by a
social worker. Most organisations surveyed reported that less than 5% of the
palliative care budget was allocated to bereavement services.
Noting that the National Palliative Care Strategy 2010 includes an
action area directed at ensuring that palliative care providers offer
appropriate 'bereavement expression' support, LifeCircle encouraged all
governments to work together with key stakeholders to establish and fund
minimum levels of bereavement service provision to families and carers of
people with a terminal illness.
The committee was glad to hear of the high-quality support services
available to carers of terminally ill people through organisations such as
LifeCircle, the Amaranth Foundation and Very Special Kids. The range of
services offered such as in-home support, respite, mentoring, telephone
counselling and information on grief and bereavement is critically important to
support carers and should make up the suite of measures for best practice
palliative care provision. The committee agrees with witnesses who called for
improvements in these support services for carers.
As outlined above, many carers find access to relevant information about
palliative care services very difficult to locate. Mr Richard Burnet told the
committee about his wife's suggestion of a 'simple website that has everything
you need that you can go to, work out what your steps should be and how you
should follow some sort of a process to work out who is going to help and
when'. He noted that existing services, while very good, are 'disparate and all
over the place'.
The committee notes the CareSearch website helps to address this need and
encourages the provision of simple, timely and relevant information, through
this website and other appropriate media, to families and carers, consistent
with the aims of the National Carer Strategy.
The committee also considers that better provision of bereavement
support services should also be prioritised in recognition of support for
carers needing to continue after a patient's death.
The committee recommends that the government, with the assistance of the
Council of Australian Governments, take steps to improve the provision and
timeliness of information to palliative care patients, their carers and
families. Processes should be put in place to ensure that patients, their
carers and families are provided with the right amount of information, in the
right format, at the right time and that a 'show bag' approach be avoided.
The committee recommends that this process begin with a review of the
The committee recommends that all governments work together to fund
minimum levels of bereavement service provision for all families and carers of
people with a terminal illness.
Other issues for carers
The committee heard comments from a number of witnesses about Carer
Allowance which is a Commonwealth supplementary payment for
parents or carers who provide additional daily care to an adult or dependent
child who has a disability or medical condition or is frail aged.
If a person is caring for someone who is 16 years or older, eligibility
for Carer Allowance is described as follows by the Department of Human
You may receive Carer Allowance (caring for a
person 16 years or over) if you:
- are looking after a person aged 16 or more who
has a disability or medical condition or is frail aged and needs additional
care and attention on a daily basis and
- provide the care for that person in either your
home or that person’s home.
You may receive Carer Allowance for up to two
adults in your care.
If the person you care for goes into respite care or
hospital, you can
still receive Carer Allowance for up to 63 days in a calendar year when the
person you care for:
is temporarily out of your care or
- is in hospital.
[In relation to medical reviews]
the person you care for will generally be reviewed every
two years to check whether there are any changes to his or her medical
If the person you care for has a disability or
medical condition and requires high care, he or she is unlikely to have many
If a person is caring for a child under 16 years, eligibility for Carer
Allowance is described as follows by the Department of Human Services:
You may receive Carer Allowance (caring for a
child under 16 years) if:
- you look after a child with a disability or
medical condition who needs additional care and attention on a daily basis or
- care for two children with disabilities and the
children do not individually qualify you for Carer Allowance (child) but
together create a substantial caring responsibility and
- you live with the child (or children) you are
can take a number of breaks from caring, up to 63 days per calendar year (1
January to 31 December) for respite, and still be eligible for Carer Allowance.
If the child goes into hospital...you can
continue to receive Carer Allowance if the child you are caring for goes into
hospital, as long as you continue to provide care for the child while he or she
is in hospital and you intend to resume caring for the child when he or she
...To check your eligibility for Carer Allowance,
the child you care for may be required to have a medical review on reaching
these developmental milestones:
- four years and eight months
- 10 years
If the child’s disability or medical condition
is on the list of recognised disabilities, he or she will not have milestone
The payment rate of Carer Allowance (caring for a
person 16 years or over) is $114 per fortnight. The payment rate of Carer
Allowance (caring for a child under 16 years) is either a fortnightly payment
of $114 and a Health Care Card for the child, or a Health Care Card for the
child, depending on the child's care needs.
Professor David Currow noted that Carer Allowance constituted a 'thorn
in the side in Commonwealth paperwork' where the onus is still on the family of
the patient to follow up with Centrelink for the payment to flow on after an
assessment has been made by a health professional. He commented:
As we think about entitlements, we are talking about the
ability to actually say, 'This person now has a life-limiting illness.' At a
community level, that will be a huge shift. I think the United Kingdom,
particularly England, have made that shift in the last few years, and they have
started to create primary-care registers, which have a whole lot of flow-on
effects in terms of the entitlements for that person and their carers.
The committee also heard from Mr Richard Burnet, the father and carer of
two young children with terminal illnesses, who is not eligible for Carer
Allowance, although his family does receive the childcare rebate. He told the
committee that if stopped working he would become eligible for Carer Allowance:
Mr Burnet: ...It would allow our costs for the full-time carers and maybe
$45,000 a year, and we would get $15,000 of that back through the childcare
rebate—$7,500 per child.
CHAIR: But if you got the allowance you would not be able to pay for all
Mr Burnet: Yes. You would pay for your carers, but I do not know what you
would live on.
Senator BOYCE: I am still trying to work out how we get to the situation where we
stop forcing people to become impoverished before we help them and at the same
time satisfy the taxpayer that they are not supporting people to live in
Mr Burnet: Exactly. The recent news that scared the daylights out of us was the
possible abolishment of the childcare rebate or having it means-tested, because
that would include me. The government would not say, 'You're a special
exemption because you've got disabled children.' They do not do that. That is
not the purpose of the childcare rebate, but luckily for us it is the only
support we get from that perspective.
Although the committee did not receive evidence concerning the adequacy
of the Carer Payment, it acknowledges that monetary support is provided by the federal
government to carers who are unable to work as a result of taking on that role.
Such support is provided through the Carer Payment. The Carer Payment:
provides financial support if you are unable to work in
substantial paid employment because you are providing full-time daily care to
someone with a severe disability or medical condition, or to someone who is
The Department of Human Services identifies the eligibility
You may be eligible for Carer Payment (caring for a person 16
years or over) if you provide constant daily care in the home of the person you
care for and he or she:
- is aged 16 or more with a severe disability or medical condition or is
frail aged, or
- is aged 16 or more with moderate care needs and has a dependent child
who either is under six or is aged 6–16 and eligible for Carer Allowance.
The person you care for must also either:
receive an income-support payment from us or from the Department of
- be unable to receive an income-support payment from us or the Department
of Veterans’ Affairs because they have not lived in Australia long enough to be
- meet the care-receiver income and assets tests.
The committee has concerns about how families in circumstances such as
those of Burnet family with terminally ill children may become vulnerable if
changes to eligibility are made to Commonwealth family and carer payments in
the future. The committee emphasises the need for any changes to Carer
Allowance and/or the Child Care Rebate
to account for the special circumstances of families in these extremely
difficult situations. In particular, the committee notes that any move to
abolish or means-test the Child Care Rebate may have significant financial
impacts on families such as the Burnets who care for terminally ill children.
The committee recommends that Government give careful consideration to
the special circumstances of families caring for terminally ill children when
considering future changes to the eligibility criteria for the Carer Allowance
and/or Child Care Rebate.
Recognising carers in funding
The committee heard that the activity-based funding (ABF) model for
sub-acute care (coming into effect on 1 July 2013, as described in chapter
seven) does not accurately reflect the nature of palliative care, nor place
enough value on the role of carers. Dr Yvonne Luxford, Chief Executive Officer
of Palliative Care Australia (PCA), noted that an activity-based health funding
model assumes that 'a service event is one patient with one clinician'.
The submission from PCA argued that the pricing model for activity-based
funding should include an expanded notion of the 'patient' to include family
The concept of the patient in palliative care is unique
within the health system. In addition to the person with a terminal illness,
palliative care treats and supports the family, carers, loved ones, and others.
This care delivery to all related individuals, and inherent expansion of
meaning of the concept of the term patient is integral to the philosophy of
palliative care. It is essential that this expanded notion of a patient is
recognised within the funding models.
Given that the plans for ABF indicate a service event is
between one patient and one health professional, it is essential that an
expanded concept of patient be applied to palliative care. PCA understands that
it is already the intention of the Independent Hospital Pricing Authority
(IHPA) to treat bereavement services delivered to the carer/s and loved one/s
of a deceased patient as a service event, this conceptual expansion may offer a
mechanism to expand the overall concept of patient in palliative care delivery.
PCA argued that non-clinicians such as a care worker assisting with
showering or a volunteer carer who needs funding for training needs should be
properly recognised within the costing model.
Similarly, the submission from the Eastern Palliative Care Association
drew attention to the problems with activity-based funding in being unable to
recognise the complex contributions of carers:
Activity Based Funding in sub-acute care as proposed pays no
attention to the needs of carers. As stated previously, the needs of carers
are critical to allowing the clients to die in their place of choice. To only
count face to face treatment with the client does not acknowledge the support
needed for the carer. Work with the carer needs to be recognised and funded
accordingly in the new funding system.
Associate Professor Rohan Vora, President of Palliative Care Queensland,
illustrated to the committee the estimated costs of institutional care,
compared to the costs of home-based care:
Prof. Vora: ...If you are talking about an acute bed in a
hospital it is probably around $1,000 to $1,300 a day for an acute bed. We know
that a palliative care bed in Queensland is costed at about $950 a day. We know
that if you go down to a step-down facility where maybe you do not have as much
need for acute intervention, pain management and a whole lot of ancillary
services, it is probably around $600 or $700 a day. And in a nursing home, as
we heard before, maybe it is $150 to $200 a day above what is already
subsidised to put in the extra care. So it all depends on where the person is.
Of course, we know that, if they are at home and looked after
by a carer and want to exploit the carer and pay them nothing, it may be $60 or
$100 a day—
Senator BOYCE: For them.
Prof. Vora: That is right—and then the carer gets
stressed, depressed and all the issues that go around that, so how do we pull
those costs in? You might do that and exploit all the carers. They get burnt
The committee commends the work of unpaid carers around Australia who
put tremendous effort and energy into caring and serving those receiving
palliative care. These carers are often the very close family members and loved
ones of the patients. The strain experienced by carers often goes unnoticed and
the committee heard that the experience of caring is often an escalating,
stressful burden which does not end when the patient dies, but continues during
the time of grief and bereavement. The committee especially thanks the carers
who took the time to share their experiences during this inquiry.
The committee agrees that the new activity-based funding model for
healthcare should take into account the complexity of palliative care provision
(that is, not just one patient and one clinician) and recognise the crucial
role played by carers in relieving additional healthcare cost burdens on
governments and society. Carers volunteer countless hours in the service of
patients and loved ones with terminal illnesses and this contribution should be
reflected in the design of appropriate funding models.
The committee recommends that processes be put in place by the
Independent Hospital Pricing Authority to ensure that the calculation of
activity based funding for the provision of palliative care takes into account
its complexities, including the contribution of carers, and the desirability of
its provision across a range of different settings.
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