Palliative care for special needs groups
Palliative care services need to be sufficient flexible to meet the
needs of groups that may have different values or needs around death and dying.
A range of witnesses expressed concern about the accessibility of palliative
services for particularly Indigenous Australians, and children and adolescents.
Palliative care for Aboriginal and Torres Strait Islanders (ATSI) was
raised by numerous submitters and witnesses, with most of these identifying both
the availability and appropriateness of care as key concerns. Greater
engagement with Indigenous communities and health services, as well as more
funding and specific training for people engaged in palliative care delivery
were offered as possible solutions to help overcome these barriers.
Cultural appropriateness of care
The cultural appropriateness of care was an issue that was raised
repeatedly in the context of the delivery of palliative care in Aboriginal
communities. Many contributors attributed the relativity poor engagement by
Aboriginal Australians with palliative care services to health professionals'
lack of cultural knowledge around death and dying.
Carers NSW specifically discussed the issue in terms of the spiritual
and cultural rituals associated with dying:
Aboriginal people often have different cultural understandings
and values which influence the types of services they are willing to access.
This includes different understandings of concepts such as kinship and family
relationships, caring, place, healing, communication styles and death and
dying. These differences are particularly significant in the context of palliative
care, when a loved one is dying and spiritual and cultural rituals can be
Ms Sarah Brown, Chief Executive Officer of Western Desert Aboriginal
Corporation and Manager of the Purple House, provided the committee with an
example of the cultural and spiritual rituals that palliative care service
providers in Aboriginal communities must take into consideration:
We were talking about cultural considerations before. Culture
is not static. There is an issue of payback for some communities, and that is
that traditionally no death is ever blameless; every death is the result of somebody
doing something wrong or the wrong way. That can have implications for
palliative care. If a person really wants to go home, their partner, their wife
may suffer payback from the deceased person's family after the death, and that
is really difficult to deal with. In our experience, it can be used an excuse
not to provide palliative care and for that person to die in hospital. Then the
person who is going to pass away is always the one who is really keen to be
back on country, and often it is a matter of them being able to persuade their
family to provide that support.
But it varies. It could easily be used as an excuse not to do
palliative care on community, because it is too hard. The family might get
payback or the nurses might get payback for that death. This is a topic that
the directors of our committee have had to deal with and talk about a lot over
the years because there will be a time when someone we take home for dialysis
dies either on a dialysis machine or in the community while they are home. A
lot of it is about communication. It is about all the family and the extended
family understanding that that person is very sick, that this is their wish to
be on country and that their death is not going to be anybody's fault and
everyone is doing the best they can for them.
So sorry business and the cultural issues can have an impact
on what care is provided. We have had families where the person is desperate to
go home but the family is scared of what will happen after the death, scared of
payback. In some cases it has been a matter of the palliative care revolving
around getting the person home for a few days to say goodbye and then back to
hospital to die. But it is great if people have got those choices and the
professionals have the skills to be able to have those conversations with
The Australian Nursing Federation (ANF) emphasised the general importance
of respecting the 'cultural, spiritual and community needs' of Aboriginal and
Torres Strait Islander peoples in mainstream health care:
Health care professionals from all disciplines involved in
palliative and end of life care must learn to be respectful, mindful and
dedicated to providing care within the cultural and spiritual beliefs of the
individuals they care for. Such health professionals do not need to know the
culture and spiritual beliefs and knowledge – they need to respectfully follow
the guidance of those community members who are experts.
KinCare concurred, highlighting the need for better training in
understanding the cultural preferences of Aboriginal groups:
Mainstream services may not provide culturally appropriate
care due to a lack of understanding of Indigenous culture, rigidity in systems,
and a lack of training of staff in cultural competencies and person centred
care. Cultural preferences relating to death are particularly important.
More broadly, it was widely recognised by submitters that '[i]mproving
the cultural appropriateness and sensitivity of mainstream organisations',
as well as better engagement with and utilisation of ATSI community and health
services, would help to improve palliative care for Indigenous Australians.
Carers NSW discussed the 'Practice Principles' developed by the National
Palliative Care Program as a 'useful guide' and highlighted the 'concept of
cultural safety, which emphasises respecting and empowering the cultural
identity and wellbeing of an individual'.
Similarly, Palliative Care Australia (PCA) argued a case for 'all
policies, procedures and processes of health care' to 'respect and reflect
different cultural and ethnic values, beliefs and practices that surround
death, dying and end of life care'. A key element in their argument is that commitment
is made to education and training that includes:
- significant investment by government to increase the number, qualification
levels and professional registration of Indigenous peoples in the health
appropriate training and education about cultural perspectives relating
to palliative and end of life care issues, in core curricula for all health
workers and health practitioners providing services to Indigenous people; and
- inclusion of palliative and end of life related topics in the
core curricula for Aboriginal health worker Certificate III and IV continuation
of PEPA to build on or develop cultural appropriate education for Indigenous
The Commonwealth currently has a significant number of initiatives
targeted at increasing Indigenous participation in the health workforce.
In addition to the commitment to education and training, PCA emphasised
the need to work with Indigenous organisations themselves to develop models of
care that meet the needs of the community. Concrete measures would include:
support and funding of an increase in the availability and accreditation
level of interpreters to communicate with indigenous Australians;
- support and funding for culturally specific research on the nature
of grief and bereavement in indigenous communities and the implications for
this in the development of appropriate support services; and
- the development of strong linkages between community controlled
health services and specialist palliative care services.
The Australian General Practice Network (AGPN) similarly offered
specific recommendations intended to improve the cultural appropriateness and accessibility
of palliative care that also included fully funded and supported training and
education programmes for health care professionals to address the specific
needs of Indigenous communities.
Accessibility of palliative care
According to many submitters there are specific barriers to the
accessibility of palliative care to ATSI people. In addition to concerns
relating to the cultural appropriateness of care, there are other specific
barriers ranging from mistrust of mainstream services, there being no services
available, or that treatment is not available close to hand, and people do not
want to leave their homes or communities to receive treatment. KinCare and
Carers NSW both raised mistrust as an issue:
Many Aboriginal people mistrust mainstream services and
medicine, preferring to access services delivered by Aboriginal organisations
or individuals. This reduces their access to diagnostic and treatment services,
delays identification of the need for palliative care, and may result in a
decision not to take up services available. 
Many Aboriginal people are reluctant to access mainstream
health services. This is often linked to past experiences of discriminatory
policies and practices directed towards Aboriginal people, such as removal of
children and a lack of rights and choices, the impacts of which continue to
shape the lives of Aboriginal people today. Mainstream services may also be
perceived as culturally inappropriate, as they may be unfamiliar with the
values and traditions of the local Aboriginal communities or engage in
practices which appear insensitive. For these reasons, Aboriginal people often
prefer to use specific Aboriginal community services, although in the case of
palliative care this is often not available. 
The ANF provided an example that demonstrated some of the challenges
facing indigenous Australians who require palliative care and service providers
who deliver that care:
One example was that they have come to an arrangement for one
of these women that she goes to Alice Springs for three weeks and comes back
out to the community for one week. That is the cycle. That involves a road trip
every time she does that. That seems in some ways to be working, but in terms
of being able to do that better in the community they just do not have the
resources to support them in their homes. It comes back on the remote area
staff, who are remote area nurses and Aboriginal health workers. Whilst they
might say it is certainly within their remit to provide all sorts of care for
people, they are not resourced well enough, as you would know, to provide that
for someone in their home. End-of-life care requires a lot of resources, time
and commitment. That was just an example of how when people have to go and
access things there is a distance factor. Things like HACC services and those
other things that have been talked about are just not available in those
communities and it comes down to a very small amount of health resources to
provide that additional care. It just seems that people are then disadvantaged
because they cannot die in their own home as they would choose to.
Ms Sarah Brown gave examples of the practical difficulties of providing
palliative care, particularly for renal dialysis patients in remote
communities, where resources are scarce:
I was a remote area nurse for a long time, and the times
when people palliating in communities worked really well were when there were
enough resources for the primary healthcare service to dedicate a nurse to be a
support person for the family for the period of that palliation. It works
better in bigger communities where you have a big team. I managed a palliative
clinic for a couple of years and had a fellow with end-stage renal failure who
opted not to start dialysis in the first place. He went home to die, and I was
able to provide that family with a nurse 24 hours a day when they needed him.
To know that family really well and to take over pain management a whole lot
was fantastic. So that is about resources and remote communities.
Certainly at the moment people by default will often end up
in hospital for a long time. There is a big gap in Alice between hostel
accommodation and nursing home accommodation, and there is nothing in between.
In hostels you have to be incredibly independent to stay there. There are few
resources supporting people in hostels Nursing homes are full of old people,
which is not necessarily our client group, and there are not many beds. So we
are in the situation where people can be in the continuous care ward for 12
months or 18 months, in the hostel, going across for dialysis, coming back—that
is their life, and it is no life.
Ms Brown explained that the resources required by Aboriginal people and
their communities may not be typical and as such are not funded by the
In terms of issues, it is all about resource provision and
about the difference between what a government service thinks should be
provided and what Aboriginal people and their families think should be provided.
For example, often we will have trouble sourcing the resources for travel, for
a bed that is off the ground, for blankets, for extra food for the family while
they are looking after the person. The government may support the process of
discharging someone from hospital. It may provide travel for that person to get
home, but, in terms of paying carers in community to provide extra support, the
only organisation that I know that has some resources for that is NPY Women's
A personal account of the challenges facing Indigenous Australians was
given by Ms Cherie Waight, Victorian Aboriginal Care Project Coordinator for
the Victorian Aboriginal Community Controlled Health Organisation. Ms Waight
Palliative care is not a word for us in the Aboriginal
community. It is very foreign to us...Traditionally in our culture—and, I am
aware, also in many other cultures; though I am here to talk about our
people—we just took care of our own people. We did not know that there were
other services available, and we did not know that we could have assistance.
Many of our people managed and struggled within their own home environment.
Ms Waight's story described the lack of understanding between palliative
care providers and Indigenous people, specifically around communication and
information sharing, as well as the cultural barriers she faced while caring
for her terminally ill husband. Her full account is included to reflect the
issues that arose in the relations with the service providers, but also to
illustrate the expectations of her extended family around her husband's
I want to share my personal experience with you. I am a
49-year-old woman. Going back 23 years, I lost my husband. My husband had
cancer. He had a brain tumour. There were two different cultures at play. My
late husband was a non-Aboriginal man, but I was an Aboriginal woman. I was
only very young and would not have known what the word 'palliative' meant. I
came from a little country town, as it was at that time—it is very big
now—called Shepparton. I came to Melbourne and I met my late husband. Within a
short time we found out that he had cancer. He was 24 and I was 21. During that
time my late husband went through chemotherapy and radiation, and I had no
understanding about chemotherapy. I had no understanding of what that did. I
had no understanding of what radiation was all about.
I would take my husband to treatment, I would take my husband
to hospital, I would go to work—however I fitted work in—and I would take my
12-month-old baby between home and my place and my work and my mother-in-law's.
Then I would bath and feed my husband, because he had come to a stage where he
could not bath himself and he could not feed himself—and we are talking about a
30-year-old man. I did not know about, and I was never offered, palliative
care. I was never told that I could have my husband cared for, other than "Ms
Waight, you need to bring your husband in because we've got to give him some
morphine. You cannot administer that." That is all I knew. So, okay, Alex
would go in for a couple of days and then I would have to pick him up and I
would take him home, I would bath him and I would feed him. He had been a very
strong man who had been totally independent.
He became a little bit more permanent in the Heidelberg
Repatriation Hospital and I thought: "If he's okay why can't I bring him
home?" — because that is what I did; I always brought him home. But when I
walked in there they said to me, "We're going to transfer him to Caritas
Christi. That is in Kew, Ms Waight. We have to as we can no longer care for
him." I wondered what Caritas Christi was, as I did not know. I challenged
that. I was 24 years of age and I never ever challenged anything. I had always shown
nothing but respect, because that is what I was taught by my elders and my grandparents
and my community: "You listen and you hear. You respect everything that
you hear from a non-Aboriginal person." But I decided to say, "Well,
what does that mean? I don't understand. I don't know what that means." My
late husband used to always say to me, "The last thing I want to do is to
be put into somewhere where I am just going to die." So I would often say
to them, "No, I need to bring him home." The choice was taken out of
my hands. I would say, "No, as Aboriginal people we take care of our
own." That is all I know. We did that with my grandfather when I did not
even know what a palliative approach was. In the end, they said to me, "You
just need to go and have a look at Caritas Christi in Kew and tell us what you
think. This is the address." I dropped Nerita, my daughter, off to her
grandparents and said, "This is what they have decided to do. This is what
I am going to do. I am going to go over and have a look."
I went over to Caritas Christi, had a look and walked out in
tears. I was traumatised, absolutely traumatised. As soon as I walked in, I saw
two elders come out of there who had passed away. I asked the nurse to tell me
what this place was about. She told me, 'This is where you come and have your
last breath really. We take people beforehand so they can die here.' I said,
There were cultural differences. I went home to the in-laws
and explained to them I want him to come home. What you call palliative care
was called hospice care at the time. I challenged the situation and they said,
'He must stay here. You cannot take care of him.' I said, 'How do you know I
cannot take care of him? I have been washing and cleaning him, feeding him,
dressing him and getting him to his parents, who were also totally
incapacitated and unable to assist in things because they had no transport and
were a low-income family. The father had very serious chronic illnesses too. I
wanted to talk to them about some cultural issues, which went in one ear and
out the other. They did not want to know about it.
Anyway, my husband stayed in Caritas Christi. I respected
what the doctors had chosen. I respected that they knew best what had to be
done. I asked for some culturally appropriate things for me. I explained to
them that I have a very big family and am going to have family coming here
because my husband was accepted into this very big Aboriginal family. They
said, "No, you cannot have that. You are only allowed a couple of people
in and out." Often my family would travel down from Shepparton to visit my
husband and myself. Alex was in Caritas Christi only for two weeks. My spirits
came and told me that my husband would not last more than two weeks in Caritas
Christi because it was a place where he did not want to be.
I asked for some things to be done so that, culturally, my
daughter and I could be protected, and so I would know my husband's journey
would be okay. Those things were not allowed to happen. In the last few days of
my husband, I had a lot of family come to visit him. Alex came from a very
small direct-sibling family. I used to hear the nurses say, "There are too
many black people in here. What are we going to do about it? You need to go and
tell her." They did not know that I was listening. "You know she
smells. She needs to go home and have a shower. Are you going to tell
her?" Of course I am not going to leave my husband. I was newly married.
You knew it was all about the differences of colour. And no, my husband did not
last more than two weeks in there. The last two nights of my husband's life my
family was in and out and nurses would come to me and say, "You have too
many people here." I would say, "I come from a very big Aboriginal
family. Somewhere along the line you have to accept that." "No, you
can only have one or two." I understand it can be uncomfortable for other
people going through that journey. I understand there are families who like to
do their journey very quietly. I get all that but it is about making a
difference and making palliative care services understand. I am going back 23
years because my daughter was one. She turned 1½ when her dad died. That was my
Palliative Care Australia (PCA) outlined some examples of 'positive
activity' with regard to palliative care for Aboriginal and Torres Strait Islander
peoples in some parts of Australia:
We are certainly linked in and very aware of the delivery of
palliative care in certain areas that predominantly have an Aboriginal
clientele, such as in Alice Springs, where it is quite a different model of
care, and it is usually a different disease model also. It is predominantly
end-stage renal as opposed to cancer, which is what you see in most of the rest
of the country. Efforts have gone in there to ensure that people can die on
country and, as you were also saying, that they do not have to leave country.
There is a lot of effort made to achieve that, but there is not necessarily the
funding and support to make sure that that happens. I think, as you mentioned
earlier about the potential for Closing the Gap funding to be used in that
area, that is a great opportunity.
...and there are different locations where there has been lot
of very positive activity. I would speak to Victoria as being an area where
they are really trying to address Aboriginal issues as well in the delivery of
palliative care. They have very active groups there. Also, in some areas some
of the Indigenous health workers have taken on additional training in
palliative care. I am aware of people on the Torres Strait Islands and up
around the Cairns area who have certainly done that.
The desire of many indigenous Australians to return to country at the
time of their death was consistently raised during the inquiry.
The Purple House explained the importance of helping Aboriginal people with a
limited lifespan to return to country and how their 'purple truck' was
The emphasis is all about getting people with a limited
lifespan back to country, to spend time with their families, to pass on the
cultural knowledge and to contribute to community for as long as possible.
The AGPN recognised that the desire to remain at home during end-of-life
care was not unique to Indigenous Australians but presented more challenges for
Aboriginal and Torres Strait Islander peoples:
...whilst Indigenous Australians, like non-Indigenous
Australians, overwhelmingly prefer to die in the familiar surroundings of home,
in some communities there can be added complexity to providing effective,
quality care associated with the poor standard of/limited access to basic
services in these communities.
Aged and Community Services Australia (ACSA) shared this view:
There is a general preference in Indigenous communities to
remain in the family unit, often with the involvement of traditional healers.
Caring for older Indigenous people who are dying in these circumstances can be
challenging due to the often poor standard of accommodation and basic services
in many communities, and the crossover of western and traditional approaches to
medicine. These circumstances call for considerable flexibility in service
delivery, preferably in partnership with the informal carers. Training and
employment of more Indigenous people to deliver aged care would assist.
National Disability Services provided a case study where the Ngaanyatjarra
Pitjantjatjara Yankunytjatjara (NPY) Women's Council facilitated the return of
an indigenous woman ("BL") to her country just prior to her death:
NPY received a referral from NT Palliative Care team and
Purple House Renal Dialysis Unit requesting assistance to return BL to her
remote community to pass away. After being on dialysis for 15 years doctors had
decided she could receive no more treatment. She had only a short time to live.
BL had lived in a hostel in Alice Springs during this time and
had had little contact with family and had only been out on the lands once for
a visit. To return her home, there were many things to put in place:
Locate family: Because BL
had been in Alice Springs for so long she had lost touch with most of her
Liaise with remote clinic
staff: Because of shortage of staff, the remote clinic was dubious about
having BL back in community to "finish up"...
Discharge Planning: Royal
Flying Doctor Service was notified...
Organised for new bedding and mattress
to be sent out for BL.
Spoke with remote Centrelink team
and set up carer payment immediately for main carer.
Gave purchase orders for fuel to
family members from other communities so they could drive over to visit BL.
Contacted prison in Perth so BL’s
son could have phone link up with his mother.
Gave purchase order for community
store so family could buy extra food.
Final Days: When BL flew
into community there many family members present to meet the plane. BL was
happy and aware of her surroundings...
BL spent 8 days in her community and died peacefully
surrounded by family.
The option to return to country was also endorsed and recommended by PCA
who suggested that 'clear policies, procedures and mechanisms are established
to support "return to country" for Indigenous Australians who are
approaching the end of their life'.
With respect to a collaborative approach to palliative care for Indigenous
Australians, the Australian and New Zealand Society of Palliative Medicine (ANZSPM)
recommended that the Commonwealth government 'support doctors working in
Aboriginal Medical Services throughout the country in all practical ways'.
The ANZSPM continued:
The development of a palliative approach for Indigenous patients
with non-malignant conditions requires active collaboration between Aboriginal
health providers, primary care providers servicing Aboriginal communities and
specialist physician groups. The Commonwealth through the various peak bodies
could facilitate the development of such models of care. Pilot programs have
already been developed in some jurisdictions e.g. The Northern Territory Renal
Palliative Care Program.
Mercy Health also suggested that a collaborative, inclusive approach was
required and that there is a need for health professionals to actively engage
with the communities in designing those services:
There is a need for palliative care health care professionals
to engage with Aboriginal Health workers and Aboriginal Health Centres.
Together they should meet with community Elders to develop relationships and an
understanding of palliative care and support services available. This would
further enhance the care staff’s understanding of the spiritual and cultural
traditions of the Indigenous community, which has been demonstrated through
The Victorian Aboriginal Community Controlled Health Organisation
emphasised the important work of the Program of Experience in the Palliative
Approach (PEPA) with Indigenous communities. Ms Waight stated:
One of the most important factors that we have found is to
provide education and training to our Aboriginal health workers. One of the
things that has been a success—that is what I would call it—over the last four
years is having the opportunity to continue to train our Aboriginal health workers.
We have done that through the PEPA training. That PEPA training has been
designed to be culturally appropriate. One of the most important things is
making our Aboriginal health workers and our Aboriginal hospital liaison
officers that work within hospitals comfortable with dealing with what you call
'palliative care'. With that, we have had the opportunity to develop
specifically culturally appropriate Aboriginal health worker PEPA training. In
saying that, the importance of that is that we have been able to train 135
Aboriginal health workers across the whole of Victoria.
Other witnesses were equally positive about the work of PEPA with
however, several submitters argued that further government support and an
expanded role for PEPA were needed. For example, the Cancer Council NSW and
LifeCircle recommended that the Commonwealth government continue to enhance
PEPA's 'focus on Aboriginal and Torres Strait Islander palliative care,
incorporating Aboriginal and Torres Strait Islander cultural awareness for
specialist palliative care providers and generalist health workers involved in
The Little Company of Mary Health Care was concerned that 'Current funding
levels for PEPA are inadequate to meet existing demand and as more people
require care in non-specialist setting this demand will only increase'.
The Department of Health and Ageing submissions discusses palliative
care services for Indigenous Australians at a number of levels. The department
stated that palliative care service is included in the National Strategic
Framework for Aboriginal and Torres Strait Islander Health (NSFATSIH) 2003‐2013 which
includes, as one of its key principles, 'activities to improve the access to, and
quality of service delivery (including palliative care where appropriate) for
all Aboriginal and Torres Strait Islander people'. 
The Department also submitted that '[t]he palliative care needs of
Aboriginal and Torres Strait Islander people with a life‐limiting illness are considered and
addressed in all the work progressed under the National Palliative Care Program
This program includes support for numerous projects including funding
the Wodonga Institute of TAFE to develop of an Aboriginal and Torres Strait
Islander palliative care resource kit.
The kit included:
Practice principles for staff at all levels who provide care to
terminally ill Aboriginal and Torres Strait Islander people in mainstream
palliative care services or hospices;
- Education and training resources to support the Practice
- A discussion paper on the existing literature relating to
Aboriginal and Torres Strait Islander peoples’ perspectives on death and dying.
The committee understands that there are important cultural
considerations around death and dying that must be considered in the provision
of palliative care to Aboriginal and Torres Strait Islander Australians. The
committee takes the view that every effort should be made to ensure that the appropriate
needs and wishes of the person requiring such care in these communities are met
and that Indigenous Australians should have access to the same standard of
palliative care as non-Indigenous Australians.
The committee acknowledges the evidence it received during the inquiry
that specifically cited the importance of supporting Indigenous people to
'return to country' in their palliative care journey and spend their final days
with family. In view of that evidence the committee strongly supports efforts
to ensure this is possible.
The committee endorses the recommendations of Palliative Care Australia
that, in relation to Commonwealth funded programs, it support:
- appropriate training and education about cultural perspectives
relating to palliative and end of life care issues, in core curricula for all
health workers and health practitioners providing services to Indigenous
- inclusion of palliative and end of life related topics in the core
curricula for Aboriginal health worker Certificate III and IV continuation of
PEPA to build on or develop cultural appropriate education for Indigenous
The committee recommends that the Australian government increase funding
to palliative care programs for Indigenous communities in rural and remote
areas, with a particular emphasis on return to country.
Children and adolescents
The palliative care needs of children and adolescents were the subject
of discussion during the course of the inquiry. In particular, the need for and
availability of specialist palliative care services for babies (both perinatal
and neonatal) and children and adolescents, as well as the transition from
services for children to those available for adults, were raised.
Perinatal and neonatal palliative
A number of submitters were concerned about a lack of specialist
perinatal and neonatal palliative care in Australia. The committee heard several
case studies demonstrating the need for perinatal palliative care, including one
in which a woman and her family received appropriate care and support and another
instance where a woman and her family experienced 'misunderstanding,
miscommunication, suspicion and [...] neglect from medical professions'.
Associate Professor Dominic Wilkinson of the University of Adelaide
There is an urgent need for more research into neonatal and
perinatal palliative care in Australia. Attention needs to be paid to ensuring
that palliative care is available in all major perinatal centres and neonatal
intensive care units, and that women and infants are referred appropriately.
Palliative care in Australia currently provides very valuable
support to many children and adults with life-limiting conditions.
Dying newborn infants and their families need support too.
Associate Professor Wilkinson also identified what he believed to be the
barriers to perinatal palliative care in Australia:
I would like to suggest that there are at least four barriers
to the provision of good neonatal and peri-natal palliative care. These
include, first, a simple lack of awareness of the problem and of the needs of
these infants and their families; second, negative attitudes, including
implicit and sometimes explicit criticism of women who choose to continue their
pregnancy in the face of a serious malformation; third, ethical concerns and
misunderstandings, particularly discomfort or fear associated with the care of
dying newborn infants; and, fourth, a lack of necessary resources.
Palliative care for foetuses and newborn infants is just as important as
it is for people with life-limiting diseases at any other age. Associate
Professor Wilkinson emphasised the need for education to inform parents and families
of the best support available and a need for research in this particular area.
He finally stressed that parents and families of newborn infants with
palliative needs are able to access the appropriate services:
...there is a need to acknowledge that palliative care is
important for foetuses and newborn infants with life-limiting illnesses, just
as it is at any other age[...] Second, there is a need for research into the
needs of families of dying infants in Australia and into how best to support
them. Third, there is a need for education in palliative care for those
involved in the care of dying infants. Finally, and most importantly, we need
to make sure that pregnant women and newborn infants, wherever they are cared
for in Australia, are able to access palliative care if required and if
The committee recommends that the Australian government give increased
attention to the need for improved research, education and services to support
the perinatal and neonatal palliative care needs of health professionals,
pregnant women and their families and newborn infants.
Children and young people
Palliative care for children and young people in Australia was also discussed
during the course of the inquiry. Again there were examples provided of
excellent palliative care for children and young people, and their families, as
well as evidence that access to care was disparate and difficult to access.
The Paediatric Palliative Care Australian and New Zealand Reference Group
(PPCANZRG) discussed the level of palliative care currently required for
children in Australia and whether it is currently being provided:
[I]t is estimated that 5300 children require palliative care
each year. The numbers may be relatively small in comparison to the adult
population but the needs are great. These children require specialist care and
although efforts are underway to improve the care of this patient group, they
continue to "fall through the cracks". They often find themselves unsupported
by a local community that is fearful of and ill-equipped to deal with the death
of a child. They may not be able to access specialist care. And they are often
unable to access basic supports such as respite, equipment and financial assistance.
There are also ‘cracks’ in the evidence base due to a lack of basic research.
Palliative Care Australia supported the view that the palliative care
needs for children and adults are very different:
There is a need to recognise that palliative care for children
and adolescents is different from palliative care provided to adults. The
provision of paediatric palliative care varies widely across Australia, with some
states and territories not having dedicated paediatric services. There is a need
to ensure that families know what services are available, care is well
coordinated, high quality and supported by the best available research and
The PPCANZRG also highlighted the need for better support to be provided
to the families of those children:
The trauma experienced by parents, siblings and the wider
family from the death of a child is also profound with increased potential for
complicated grief reactions, impaired long-term adjustment and even increased
mortality. The provision of effective palliative care can be expected to
directly benefit the child but also has the potential to be a preventive health
intervention for the family, with long term implications for family
functioning, mental health, education and employment.
The reality for children with a life-limiting illness and their families
was discussed by the families in evidence to the committee. Mr Burnet has two
terminally ill sons, Sebastian and Charlie, and described some of the
challenges he and his wife have faced in their endeavours to find suitable care
and support in Victoria:
In term of the resources available to help, in what has been
one of the most complicated and confusing systems ever, we have really
struggled trying to understand what organisations do what, what funding is
available to help us with purchasing disability equipment or to help with
specialist care and who to call for all the issues that we have. I am sure many
families in our situation would have given up in frustration. We have really had
to treat looking after our boys like a semi-permanent job. Thankfully, though,
through a lot of persistence and with a lot of help from the [Royal Children's
Hospital] palliative team, we have been able to source special disability
strollers, bedding, baby equipment, car seats et cetera, et cetera—the list
goes on—and this help has been invaluable.
[T]here are so many areas of support parents of dying kids
need that general medical facilities are unable to provide. Whether it is
struggling with nights on the weekend like the one we have just had, or the
much tougher times we have ahead, we will be incredibly reliant on and thankful
for the palliative support we have found.
Mrs Fiona Engwirda shared her family's experience in Queensland:
Due to Kate’s complex medical requirements she required
intensive 24 hour care, which was provided by my husband and I, with no outside
nursing help and minimal respite funding...These care requirements had a profound
and devastating impact on our family.
The precarious balance between home life and hospital
management of a baby so complex was extremely difficult...In order to manage life
at home for Kate’s siblings, (James and Harrison) my husband (who has runs a
small business in Building Design) relocated his office to home so he could
provide continuity of care to our boys whilst I managed Kate, including her
admissions and 24 hour nursing requirements. This move (coupled with the GFC)
has had a profound impact on the business’ ability to continue to earn income,
and we suffered significant financial hardship.
The hospital system did not distribute information about
respite or make an attempt to link us with any service until Kate was 6 months
of age – we were granted emergency funding by DSQ as I presented (in tears) to a
local DSQ office, obviously stressed, exhausted and overwhelmed with the
situation we found ourselves in.
It was through my own research and talking to other parents
that I became aware of HACC (Home and Community Care) funding and located a
service directory (after many hours of internet searching) online. I proceeded
to ring every service provider in our local area, in order to see if they could
provide us with funding for respite – after days of phone calls. I had 3 service
providers lined up for interviews, after a lengthy and exhaustive process,
these interviews translated into a total of 16 hours of in-home assistance per
week. Not even 1 night per week. I proceeded to fill in the 70 page application
form for Centrelink’s disability funding in my spare time. The paperwork and
process driven system of obtaining funding on top of the emotional and physical
demands of caring were relentless.
In a bid to provide our family with respite options, [Royal
Children's Hospital] Paediatric Palliative Care Service referred us to a
facility in Sydney that provides end of life care to children at no cost to
families. Funds were sourced (approx $600) via Xavier Children’s Support
Network as part of their HACC funding for family "breakaway
packages" to contribute towards our airfares.
In 2010 we travelled interstate to NSW to visit Bear Cottage
a purpose built facility that could provide appropriate paediatric care for
children like Kate who were required specialist palliative care -while our
family enjoyed some much needed respite. We valued this experience and the full
nights of sleep that came with it.
To assist families to navigate paediatric palliative care services, Mr
Burnet recommended a 'single point of accountability':
If there was one thing I had to say, that is it: the last
thing you need when you get this sort of news is having to struggle. As we
would call it at work, it is a SPA—a single point of accountability where we
will be able to point you in the right direction for everything rather than having
to either do it all yourself or use organisations that may have part of a
puzzle but not have a complete puzzle...My wife often says that she dreams, if
she ever had the time, once the boys pass away, of getting 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.
Bear Cottage and Very Special Kids were praised in evidence to the
committee, and witnesses expressed a desire to see a similar model adopted in
Bear Cottage is the only children's hospice in NSW and offers respite and
palliative care to children and young people:
In addition to providing palliative care facilities for
children, Bear Cottage contains the amenities of a comfortable home, with 10
children's bedrooms, family accommodation and a quiet room. There are also
areas for recreation including a spa room, multi-sensory room and teens' room.
Families do not pay to stay at Bear Cottage.
The location of Bear Cottage at Manly ensures children and
families can rest in quiet surroundings or enjoy the attractions and amenities
nearby of one of Sydney's traditional beach holiday destinations.
Most families staying at Bear Cottage come here for respite
with the length of stays up to two weeks. Families using Bear Cottage for end
of life care may stay as long as necessary.
Bear Cottage was established entirely by the community and
continues to rely on the community for funding.
Very Special Kids provides similar services in Victoria:
Very Special Kids provides counselling and support services
to families caring for a child diagnosed with a life-threatening illness.
Following the death of a child families are supported through the bereavement
[Very Special Kids] also operate Very Special Kids House an
eight bed children’s hospice, providing planned and emergency respite and
Very Special Kids was established in 1985 after two families
recognised there was a need to support other families experiencing the loss and
grief associated with having a child diagnosed with a life-threatening illness.
Very Special Kids depends on the community and our
fundraising activities for more than $3.3 million of our annual income. All
services are offered free-of-charge to families.
The transition from paediatric to adult palliative care services was
identified as another challenge for young people. Palliative Care Victoria
outlined several case studies, including Guilia's story which raised some of
the difficulties experienced when transitioning to adult palliative care
Giulia is an 18 year old young woman with Rett Syndrome who
lives at home with her mother, Ursula, and her sister. Rett syndrome is a
neurodevelopmental disorder that affects girls almost exclusively...
While Giulia was under 18 she attended the Glenallen Special
School and she and her family received support and services through Very
Special Kids and a state government program called Family Choices. Turning 18
meant that she had to transition from the paediatric system to the adult
service system and she and her family could no longer access the respite they
had been receiving through Very Special Kids, the special school which had been
her daily activity for 13 years or the services through the Family Choices
When Giulia was 16 her mother began the search for comparable
respite in the adult system and placed her name on a waiting list; she also
looked for an adult day activity centre; she had to apply for an Individual
Support Package (ISP) to replace the Family Choices program and there was no
guarantee that there would a package available when Giulia turned 18. Ursula
wonders how people who are not as familiar with the system cope.
Problems with funding different aspects of care were highlighted by the
Centre for Cerebral Palsy in WA who explained in their submission that the
delivery of palliative care funding in WA is highly complex:
The Centre’s residential adult clients are funded by the
State’s Disability Services Commission (DSC) on an individual basis. Each year
there are two opportunities for The Centre to assist clients requiring
additional funds to apply for increased funding. This option for increased
funding is available for clients receiving palliative care. On the other hand,
block funding rather than individual funding is provided by DSC for clients
requiring therapy and health services. All of The Centre’s services for
children are located in the therapy and health services program. Increases in
funding to this program are through growth funding, based on ‘blocks’, which
means there is currently no option for receiving more funding assistance for
children in palliative care, even though there is a recognition that they
require additional and extended support and services.
Advance care planning and children
Dr Jenny Hynson from the Australia and New Zealand Paediatric Palliative
Care Reference Group spoke of the difficulties of discussing both palliative
care and the subject of death in the cases of children:
This is where, really, it becomes specialist territory. There
is probably a whole half an hour conversation, but to put the barebones around
it the natural instinct of parents is to protect their child from knowledge
about scary things. But the evidence and the experience we have would suggest
that children are very clever and very sharp and often work things out for
themselves...The other evidence that we are aware of is that children who are in
that situation who feel that they cannot communicate with others and cannot
share their concerns do feel very isolated and often develop anxiety as result
Dr Hynson expanded on the importance of communication and the sharing of
information on both the child and their family:
If we take symptoms management, which is the piece I know
best, there are still a lot of children who are not having simple things like
pain managed because they are not able to access specialist input. If they have
a difficult moment of death, that haunts their parents for years into the
future. We know that from the literature. That has an impact on the parents'
grief, mental health—it has all these ramifications. You try to achieve the
best possible life, a peaceful moment of death, support for the family and good
The ANF provided the committee with their policy on nursing care of
children and young people with a terminal illness which includes specific
reference to the communication of information:
Children and young people with a terminal illness should be
informed and consulted and their wishes considered in any decisions made
regarding their care and treatment. These decisions should be regularly
reviewed together with the child or young person with the terminal illness and
their selected family members. 
The ANF's policy also highlights the importance of including the parents
and families in the overall palliative care process, and that the care is
provided in an appropriate setting:
The availability of a parent or significant other to support
the provision of care and to support the child or adolescent requiring
palliative care services is paramount. Parents and families should be supported
to keep children and adolescents at home for palliative and end of life care
wherever possible. Being in their own environment with their family, friends and
pets nearby, reduces the stresses associated with palliation and facilitates
dying with dignity...
Where it is not possible for children and younger adolescents
to remain at home, a dedicated paediatric hospice should be available in all
states and territories. We consider that it is not appropriate for
children/adolescents to be cared for in an adult hospice environment.
Palliative Care Australia echoed these points through requests that
funding is provided to ensure that appropriate care is available, and that a National
Paediatric Palliative Care Strategy is developed:
That funding is provided to ensure that children with life
threatening conditions and their families have equitable access to quality
information and responsive and appropriate palliative care services...
That the Australasian Paediatric Palliative Care Reference
Group be funded to develop and implement a National Paediatric Palliative Care
The Clinical Oncological Society of Australia and Cancer Voices
Australia submitted that paediatric palliative care had been reviewed in 2002
but the findings have not been implemented:
In 2002 the Department of Health and Aging funded a review of
Australian paediatric palliative care (the Paediatric Palliative Care Service
Model Review) which found that the needs of dying children had not been
addressed within the palliative care system. It is unclear if these needs have
been considered in current palliative care service arrangements. We recommend
that the senate committee revisit this review to compare its findings with
palliative care services currently available to young people. 
Palliative Care Victoria (PCV) pointed out that many children requiring
palliative care suffer from multiple disabilities compounding their care needs:
Many children and young people with palliative care needs
also have multiple disabilities. The risk, or certainty, of death in childhood
or young adulthood and their changing and often complex care needs add a degree
of complexity and urgency to their care and associated family support. The
disability service system is not equipped to meet all their needs. 
PCV also discussed the review into paediatric palliative care, saying
that resourcing and funding are required to fully implement the
One of the key findings of the Commonwealth’s Paediatric
Palliative Care Service Model Review 2004 was a proposal to establish a
Paediatric Palliative Care Reference Group to “develop the evidence based
national, definitions, standards and policies that are required to implement
integrated paediatric palliative care models, including developing information,
education and research strategies aimed at improving delivery.” Those in the
field took up the challenge and formed the reference group without any
resources or Government support. Resourcing is needed so that further progress can
be made on outstanding work particularly in the areas of neonatal and ante
natal palliative care, services for young adults and data collection. 
Questions were put to DoHA specifically on how the department funds and
resources palliative care needs of children and young people. DoHA responded
that they had provided funding for a number of projects that focussed on the
palliative care needs of young people:
The Australian Government has also developed a valuable
resource that assists families, carers, clinicians and health workers to better
prepare and equip for the many situations they may face as they live with a
child’s illness. The paediatric palliative care resource Journeys
–Palliative care for children and teenagers was updated by
Palliative Care Australia in 2010-11 with funding from the Department of Health
and Ageing for the Australian Government.
DoHA also submitted that they provide specific funding for children and
young people with cancer:
The Youth Cancer Networks (YCN) program is a 2008 Federal
Budget Measure providing $15 million to CanTeen for the establishment of Youth
Cancer Networks, from 2008-09 to 2011-12, to improve services, support and care
for adolescents and young adults (aged between 15 years to 24 years) with
The committee agrees that the palliative care needs of babies, children
and young people are distinctive from the needs of adults. The types on
conditions involved, as well as the communication and support needs of the
children and their families make this a highly complex area. The committee is
of the view that the first step that should be taken is that the
recommendations of the Paediatric Palliative Care Service Model Review that was
conducted around 10 years be revisited to investigate whether they were fully
implemented and evaluated.
The committee is also strongly of the view that palliative care should
be delivered in appropriate care settings specific to young people and the
needs of their families.
The committee recommends that, within twelve months, the Australian
government review the implementation and evaluation of the recommendations of
the Paediatric Palliative Care Service Model Review, and publish the findings
of that process.
The committee recommends that there be appropriate formal recognition of
the Australian and New Zealand Paediatric Palliative Care Reference Group, and
that the Australian government work with the organisation on the development of
a paediatric addendum to the National Framework for Advance Care Directives
The committee recommends that the Commonwealth, state and territory
governments consult with palliative care organisations, and existing children's
palliative care support services Bear Cottage and Very Special Kids, about the
feasibility of, and funding required for, establishing similar facilities in
People of linguistically and culturally diverse backgrounds can face
additional barriers in accessing care. These can be due to lower levels of
awareness of services, linguistic barriers, cultural differences, and lack of
appropriate services. CALD communities themselves are diverse, including
relatively recent migrants, established migrant families and communities, and
groups that have arrived under humanitarian programs.
Palliative Care Australia (PCA) outlined some of the key issues involved in
considering the provision of care for people of CALD background:
The consequences of culturally inappropriate care can include
psychological distress and unnecessary suffering for the patient, family,
carers and community. As Australia’s cultural diversity increases, cultural
misunderstandings resulting in the provision of inappropriate end of life care
to people from CALD backgrounds has the potential to grow. There can be issues
with translators and medical interpreters where they do not feel able to
honestly relay information due to their own cultural beliefs.
Respecting and being sensitive to people from CALD
backgrounds and their community ties is integral to the delivery of quality
care at the end of life. Cultural practices are not the sole determinants of
patient preferences and there may be significant individual differences within
The needs of older people from CALD communities, and new and
emerging communities, raise broad equity and access issues. The cultural
implications of patient autonomy in regard to decision making, acceptance and
use of advance care directives, and truth telling must be understood and
respected on a case by case basis.
The committee asked PCA about its work with culturally and
linguistically diverse communities. PCA stated:
We have different organisations represented on the steering
committees of our different programs that we run. We translate some of our
consumer resources into 21 different community languages in order to ensure
that the message is getting out there. One of the things that we are aware is
problematic with different community groups is that the tools that are used,
what we call audit tools, to ensure that the best possible care is being given
are not always validated for different cultural groups. This is something that
we are quite aware of that is a concern. For instance, we have a patient and
family carers audit tool where we check back that people really received
high-quality care. It is validated for your Anglo population but not validated
for all other community groups. So there really needs to be some time, effort
and money put into extending testing and validation of these kinds of tools and
ensuring that they best meet the needs of the entire community and not just the
quite narrow field that they do now.
Senator FIERRAVANTI-WELLS: In terms of reaching out to
organisations, we do have in our ethnic communities whole myriad groups and
different associations, many of which have been welfare based, that had their
origins in welfare and then expanded to education in other areas but still
retained their welfare base. Most of the main communities certainly have those.
How have you worked with those, and do you see scope with greater flexibility
in the system for you to do a lot more with those groups and to tap into them?
Dr Luxford: Yes.
Senator FIERRAVANTI-WELLS: Because one of the things that
concerns me is the inflexibility of the system. To what extent would you like
to see greater flexibility in the system to enable you to be a lot more
creative in terms of outreaching that work?
Dr Luxford: Thus far we have predominantly worked with those
groups through the translations of the different resources.
Senator FIERRAVANTI-WELLS: It has really been a basic
Dr Luxford: But also in getting their input into the
reference committees of the National Standards Assessment Program, so ensuring
that we have representatives there from different community groups. But it is
certainly an area that we would love to expand as well.
Palliative Care Victoria noted that the number of people accessing
palliative care services from CALD communities was lower than for the community
as a whole. When Victoria's Strengthening Palliative Care Policy 2004-2009
was evaluated, it was concluded that 'there was a need for more specific
engagement with them to improve their awareness of and utilization of
palliative care services'.
Like PCA, KinCare and other submitters identified the availability of
translators as an ongoing limitation in service provision,
and increasing these services was an explicit recommendation by PCA.
The government indicated that additional money had been put into translation
services in the aged care sector, but that 'we acknowledge in this package that
we need to do more to support the very diverse demographic that will be coming
The Centre for Cerebral Palsy identified that problems can arise where
there is a tension between clinical and cultural priorities:
Hospitals are often unable to balance clinical practice with
cultural need, with the former always getting an undue prominence in service
provision, even where the cultural element may be of great importance to the
receiver of services. It might also be the case that mechanisms for making an
individual ‘comfortable’ in a clinical sense might contradict being comfortable
in a cultural sense. This type of contradiction can cause irreparable harm to
the emotional and psychological wellbeing of an individual and needs to be
avoided as far as possible.
There were a range of proposals for addressing the diverse needs of CALD
communities, beyond provision of translation services. The Australian and New
Zealand School of Palliative Medicine recommended that 'a CALD (Culturally and
Linguistically Diverse) training module for registrars training in Palliative
Care Medicine' be developed.
The Palliative Care Nurses Australia recommended that consideration be given to
acknowledging CALD community needs in palliative care standards.
The committee notes that the Australian government recently 'provided funding
to the South Australian Partners in Culturally Appropriate Care (PICAC)
provider to develop a CALD palliative care training package'.
As the submission from GLBTI Retirement Association Incorporated (GRAI)
pointed out, gay, lesbian, bisexual, transgender and intersex (GLBTI)
individuals face some particular challenges in both aged and palliative care.
GLBTI elders have grown up in an era when homosexuality was
criminalised or regarded as a mental illness. Consequently, GLBTI elders tend
to have deeply internalised fears of homophobia, be profoundly concerned about
exposure and are often very adept at identity concealment. The ramifications of
these patterns are an increased incidence of stress, depression and social
isolation. Of special relevance to this inquiry is that GLBTI elders are also
less likely to access health care and other services as a result of their fears
Identity concealment and ignorance amongst service providers can be can
be a part of a vicious cycle of invisibility. Dr Jo Harrison observed that
'consumers who are GLBTI remain largely invisible and are therefore assumed by
service providers to not exist'.
When GRAI surveyed aged care facilities in Western Australia, the overwhelming
majority of centres said they were unaware of GLBTI people in their facility,
with the typical response being "We don’t have any of those people here".
However, most facilities almost certainly do: GRAI suggested that between 8 and
10 per cent of the 900 000 people in aged care will have non-heterosexual
The palliative care needs of GLBTI people are not homogenous, any more
than for other large groups of palliative care clients.
However, Lesbian and Gay Solidarity, and GRAI, both indicated that palliative
care providers need to show recognition and acceptance of GLBTI clients. GRAI
indicated that it had worked with residential aged care providers to produce a
set of best practice guidelines. These included providing a safe and inclusive
environment; open communication; GLBTI-sensitive practices; staff education and
training; and GLBTI-inclusive organisational policies and procedures.
The committee also notes that the Guidelines for a Palliative Approach for
Aged Care in the Community Setting consider the needs of GLBTI people.
Dr Harrison indicated that the Australian government is funding some
'GLBTI cultural awareness in aged care training, and... GLBTI targeted aged care
packages to provide services to people living at home'.
Several submitters pointed out that faith-based organisations are
significant providers of both aged care and palliative care services. They
expressed concern about the possibility that such services could be exempted
from anti-discrimination laws in respect of GLBTI staff or clients, and that
this should be prevented.
Dr Harrison pointed out the importance of a:
member of staff who is openly GLBTI or GLBTI-friendly in
approach. Often this provides a lifeline from complete isolation, withdrawal
and depression. It can also prove to be critically important when end-of-life
There is also little understanding of the needs of carers for LGBTI
people. Carers NSW noted that '[t]here is also a lack of information about the
needs of carers of persons with a life limiting illness who identify as
People from CALD communities and with GLBTI identities represent
significant numbers of palliative care service users, both as patients and as
carers. The committee notes that the Australian government is involved in
ensuring recognition of the identities and needs of both these groups, through
for example guidelines that identify specific needs, translator services, and
targeted awareness training. The committee notes the government's acceptance
that more will need to be done to provide for the diversity of people coming
into aged and palliative care. It is important that the government ensure that
the needs of all palliative care service recipients are addressed sensitively
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