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Community Affairs References Committee
Palliative care in Australia

CLEASBY, Mr Peter, President, Palliative Care New South Wales

HANSEN, Ms Linda, Chief Executive Officer, Palliative Care New South Wales


CHAIR: Welcome. I presume that you have been given information on parliamentary privilege and the protection of witnesses and evidence?

Ms Hansen : Yes.

CHAIR: We have your policy statement. I invite either or both of you to make an opening statement and then we will ask you some questions.

Mr Cleasby : We will share one, if we may.

CHAIR: Of course you may.

Ms Hansen : I will give you a little bit of background about who we are. We are Palliative Care New South Wales; you have had Palliative Care Queensland as well, today, so you will have an understanding of our structure. We are basically a not-for-profit, non-government organisation in PCA and we represent the interests of healthcare professionals who work in end-of-life care across a full range of settings, including specialist palliative care. We also seek to represent the interests of people with life-limiting illnesses and their carers and families. We are managed by a management committee of volunteers, most of whom are palliative care specialists; an accountant, helpfully, and a consumer representative. We have one full-time employee, normally; we currently have another person temporarily who is a staff member. We have a small NGO grant now to operate on. Our main interest is in providing information and awareness to our members and to members of the public. We produce some educational opportunities for members throughout the year.

We developed this policy statement because we wanted to present a united voice, if you like, for palliative and end-of-life care to government, based on input not just from palliative care people but from other people in the end-of-life care spectrum, if you like. We conducted a number of consultations with service providers and other interested stakeholders. We think this policy statement reflects the views not only of our members but also of a range of other people around New South Wales. The policy statement has come up with 33 recommendations, which I am sure you have all examined carefully in the short time that you have had it. We thought we might pull out a few of those recommendations to focus on today to give you more insight about what we are about in terms of some key recommendations. Can I apologise for Carolyn Walsh, who was supposed to be here as well, the main author of the policy statement who has been unavoidably detained.

Mr Cleasby : The vision of Palliative Care New South Wales is that every person in New South Wales who is diagnosed with a condition that will result in death in the foreseeable future will have access to quality care that addresses their physical, psychosocial and spiritual needs—which is not surprising, I would, imagine that we would think that. May I take the opportunity, belatedly, to welcome you to this the still most populous state, but maybe for not much longer.

In New South Wales, we have significant issues in palliative care service delivery, as you have no doubt heard from other areas as well across this land. There are several key issues but I suppose the central one is that every person in New South Wales does not have access to quality care as they approach and reach the end of their life. There is no equity of access. It is obviously the tyranny of distance in terms of many of our rural and remote areas but there is also significant variation even in metropolitan areas about the type of palliative care you get, the range of palliative care that is accessible and the conditions that are addressed by palliative care providers. There is great, great variation. So the quality of the care that is received is really dependent upon where you live and that is a level of variation that we find not acceptable.

Specialist palliative care services and their expertise remain the foundation stone for quality palliative and end-of-life care, in our view. Those services have to deliver service directly where their expertise is required but they are also there to support non-specialist providers. There can be no quality end-of-life and palliative care in this country if we allow specialist palliative care to be lost, to vanish, to just simply fail to thrive—as, unfortunately, it is doing in New South Wales, failing to thrive that is.

The historic cancer funding model is a great issue in New South Wales. All palliative care services are historically funded and that historical funding model was based on a view of cancer and cancer as the primary palliative care diagnosis. That is not the case any more. You have heard that elsewhere. It has been our lived experience here too. The variations raised are many but our operating view at the moment is that about 35 per cent of palliative care work right now should probably be from non-cancer areas. Some of our services have exceeded that—a couple in metropolitan Sydney have exceeded that—and many are struggling to go anywhere near that. But if you look at people's care needs across this land and across New South Wales, that is about the number that it should be. We also think that there is unmet need in cancer itself. There are still wide variations in the referral patterns for various cancer tumour groups in New South Wales. Palliative care in New South Wales has been funded on this historical cancer model, which makes no account for the additional demand that we are trying to meet. That is a local problem obviously.

In regard to current service models, there has been a silo approach to funding. That is not unusual, I suppose, and I guess there is also a sense in which palliative care is valued in a different place in each of the former area health services and now local health districts. We find that in few places it is seen as an integral part of total healthcare service delivery. In many places, it is an afterthought and in some places it is a reluctant afterthought at that. I think that was partly reflected in the way some of the COAG funding that came through for subacute was distributed within New South Wales—highly varied and, with one exception, it was mainly well established services that seemed to attract some additional funding. Places that were underrepresented in service did not seem to do very well and one area of large rapid growth where there is huge demand got as much funding as to provide for half a social worker, and that was the only palliative care funding. I did hear our Queensland colleagues earlier also mention that they saw very little COAG funding. I think it was a great disappointment but there were local decisions—the Commonwealth provided the money. On data collection, we know that there are constantly arguments about what the need really is out there for palliative care specialist services, as opposed to other services. We have problems with data. In New South Wales the ministry cannot give you good palliative care data. They do not collect it very well. The palliative care data that is there is contaminated by a range of different artefacts within the hospital system in particular. So we need to fix data collection so we can have a meaningful discussion about what is and is not happening and what is and is not needed. In the meantime, though, people need services regardless of whether we can get the data around it appropriately.

Fundamentally, access to services and the provision of services is our real issue in New South Wales. We want to see greater equity, not one size fits all, not a single model. We think it has to be highly varied to meet local needs and local variations. However, there has to be a minimum level of expectations of what constitutes access to quality palliative care service and support.

A number of the recommendations that we made that we think may be of interest to this inquiry relate to our belief that we need to move towards a model of funding specialist palliative care services that encapsulates the changing demand pattern, such as the non-cancer group, and especially in the area of consultancy advice for other care providers. Some of our busiest palliative care services are in fact acute hospital consultation services. They are providing extraordinary support upon request to people with significant palliative care needs within our acute hospital sector. They are very, very busy people, and yet we are concerned that activity based funding may in fact work against the funding of consultation services in that important area. We believe we make a significant difference in that area.

One of our recommendations, No. 6, is about our belief that there are issues about understanding palliative care services, accessing palliative care services and the complexity of those services. We think that something like a one-stop shop within each state would be of benefit. Of course, we would be of the view that the local state peak bodies would be well positioned to undertake that role, but we are still trying to convince others of the funding for that.

In New South Wales we have had an issue in the past that we believe is on the verge of being addressed, finally, but I mention it for your interest. That is the concept of dying at home where dying at home becomes a coroner's case. If you have not heard of this before, at first instance it sounds terribly horrific, but the story is simply this. Upon dying at home, if a certification of death cannot be undertaken by a medical practitioner and if ambulance services are called, the ambulance services have to go through their protocol. If a medical practitioner who can certify death is not locatable at that time, then they are obliged to contact the police. The police then have to go through their protocol, and if a medical practitioner who can certify the death is still not available at that time the police, with due regard to the coroner's requirements, have to consider it a suspicious death until proven otherwise.

CHAIR: How often does that happen?

Mr Cleasby : I think there has been a lessening of it over the last 12 months. We have certainly been raising a lot of awareness about the issue and we have been doing what we can in the community to better prepare people for this. However, I would say that it is still happening at least on a monthly basis somewhere in metropolitan Sydney or New South Wales. If I went back four years, I would be saying it was happening multiple times a month, but we seem to have gotten a bit better. I think the police and ambulances in New South Wales have also done a good job of saying, 'I know this is our protocol, but surely we can find a way to deal with this matter,' which is good and we are trying to facilitate that.

One of the problems has been that doctors are not immediately available at two o'clock in the morning to come out and certify a death. The strategy in New South Wales to try to complement that scenario is called the assessment of the extinction of life, which says that an appropriately trained registered nurse can tell that someone is dead. It seems like a fair and reasonable assumption, and maybe common sense is finally coming into play.

There was a policy released in 1999 by New South Wales Health to try and do that, but it had so many holes in it and New South Wales Health failed to consult with the other jurisdictions, such as coroners, so it became a dog's breakfast immediately on its release and has not helped the matter. It has taken since 1999 to get that policy reviewed. The current minister has indicated an intention to expedite its outcome in the next couple of months and we look forward to that being delivered. But it has been a bit of a sad saga, that one. I am sure that if newspapers had gotten on to these stories earlier there may have been more of a public outcry but is one of those quiet things because it is about dying. That is item 7. We have mentioned data.

On rural services, we recognise that it is pretty much impossible to have a specialist palliative care medical person at every country town or even major regional town. We have struggled in New South Wales. There was a time when we had one specialist trained palliative care doctor outside the Newcastle-Sydney-Wollongong metropolitan basin; there was only one for the rest of the state and she was up in Lismore. There are now two between Newcastle and Lismore and there is no-one west and there is still no-one south. So specialist palliative care physicians in regional and rural New South Wales is a significant issue still not addressed. That is part of our major workforce issue. In most of those rural and regional areas we currently have fabulously experienced and appropriately trained specialist palliative care nurses doing a great service. There are limitations to their services. As the presenter in the session before us said, nurses cannot prescribe so they have to rely on another prescriber to accept the thoughts that they are offering and to act upon them. Those rural nurses, who are, as I say, the backbone of good palliative care in those areas, have themselves expressed concern about succession planning. Many of them are older, nearing the end of their career, and the system is not allowing opportunities for people to be trained up to replace them. That is a major concern in New South Wales about how one is going to go about doing that when budgets are so tight.

Two other things, and I will finish on these. I am sure that the members of the committee have heard many expressions about what palliative care is and where palliative care is delivered. There is the subacute argument and all of that. The language has been a problem in palliative care for as long as I have been involved with palliative care, which is since early 1980s. What I would like to say to you is that, regardless of whether more people die at home, and that is a desirable goal but there are issues about why it can be problematic and complicated, regardless of whether more people can receive better palliative care in residential aged care facilities, we will still have a significant number of people approaching the end of their life in our acute hospital spaces. It is unavoidable. Whether the proportion can go down we will see over time, but at the moment it is over 50 per cent for Australia, certainly over 50 per cent for New South Wales. Three-quarters of the group have an anticipatory period before their death, so in other words there is a sense in which they are not dying acutely or quickly as in suddenly and unexpectedly, they are dying and dying can be anticipated to come. The single thing that will improve the quality of dying in our hospitals—dying happens in our hospitals, dying is one of the core businesses of our hospitals, it is just one they do not want to recognise—is that those hospitals need to become dying friendly. We had baby friendly hospitals a couple of decades ago, did we not, and we need dying friendly hospitals now. I am not saying they are the places where people always have to die, but if they do die there they need to die safely and sometimes people do not die safely due to the lack of appropriate clinical approach to their care at the end of life. So hospital-based palliative care consultation teams, which have a long history in the UK and a fairly long history in Australia too, I think are vital to quality end-of-life care in our acute hospitals. Yet not every hospital has them. One of the major referral hospitals in New South Wales up until year ago had a palliative care service that came in and did consults one afternoon a week. That does not contribute to quality palliative and end-of-life care. You need an on-site consultative palliative care team to support everybody in that hospital and particularly to deliver good quality information and care to the patients in the hospital, to improve the quality of dying and to help people die safely. That is something that we believe should be an essential. I do not know whether MyHospitals includes the availability of a palliative consultation team on a daily basis rather than an ad hoc basis. I think it really is important. In those overseas studies that have shown increasing quality-of-life for people even earlier in the disease phase, it is acute hospital palliative care teams that are providing that kind of input.

The last thing I will say is about advance care directives. There has been significant palliative care money put into advance care directives historically. While they are to be encouraged—it is hard to argue against the notion of advance care directives; it would be like arguing against motherhood since it looks like common sense—they are not in any way a guarantee of quality end-of-life care. They may appear to be something that we can do, and there has been much busyness about advance care directives, but they do not address the issues contributing to quality end-of-life care. Without having an appropriate specialist palliative care capacity across all care settings quality end-of-life care is not going to be realised.

I might just mention in passing that I know I am here in my capacity as president but I also put in a submission, submission 75. So if you thought you saw my name before, that is where it was. I put that submission in as an individual.

Senator MOORE: You have covered a lot.

Mr Cleasby : There is a lot there.

Senator MOORE: Were you here for Catholic Health Australia's evidence this morning?

Mr Cleasby : No. I unfortunately had trouble getting down from the Central Coast.

Senator MOORE: Catholic Health Australia put in a very significant submission, as you would expect. Their core recommendation was that they felt there should be developed a national standard for palliative care which is linked to accreditation so that there would be a standard that would be linked to the accreditation of hospitals, the accreditation of aged-care homes and the accreditation of services. Is that something that you have considered? You almost touched on it when you mentioned MyHospitals. If MyHospitals had a component for palliative care I think that would link to a standard. Have you or your organisation given any thought to the idea of an approved standard?

Mr Cleasby : Certainly under the current accreditation processes for New South Wales hospitals there is one that relates to the quality of dying, which is 1.1.7 in the schedule. That will be carried forward in the new version. Palliative care, regardless of what else it contributes, has a component that relates directly to the quality of dying. So I would say in part that that is addressed. Certainly when palliative care organisations such as ourselves think about a standard we have the National Standards Assessment Program that was funded and is coordinated through palliative Care Australia, which is designed for palliative care services. There is some talk about taking it further, which is not something that would be necessarily useful. That is a very complex set of issues. We as an organisation have not advocated specifically around it, but we have spoken to supporting NSAP for palliative care services.

In New South Wales I am aware of the fact that the Clinical Excellence Commission, which is one of the four pillars that we have here, is starting to look at the quality of end-of-life care across the system and will start doing some reviews around that in the coming six months or so.

Senator MOORE: You have a review in New South Wales coming up fairly soon. I saw in one of your recommendations a review of the New South Wales palliative care role delineation framework in November 2012.

Mr Cleasby : Yes. That is specifically about who is doing what where.

Senator MOORE: A good start.

Mr Cleasby : It should be, but it has to be linked to a concept of what might be considered a minimum level of service provision and how we do that in an equitable way. I believe that the accreditation processes for all healthcare services that include within their jurisdiction people with symptom related needs, support related needs, bereavement related needs—we see that as an integral part of palliative care—and end-of-life related needs should reflect the expectation of a minimum level of quality for that care. We say that that should happen, but we have not got a specific recommendation around it, I am sorry.

Senator MOORE: What is the Statewide Centre for Improvement of Palliative Care?

Mr Cleasby : It is extinct now.

Senator MOORE: That is unfortunate.

Mr Cleasby : Possibly. It is about to be resurrected as part of the great restructuring in New South Wales. The Statewide Centre for Improvement of Palliative Care was, as we have described it, an outsourcing of Commonwealth Palliative Care Program funds in New South Wales at a time when—forgive me, minister, or the past health department—the New South Wales department of health was looking at downsizing. They created this subunit using those funds and, regardless of the process, they were meant to undertake activity designed to improve palliative care service provision across the state. I think any objective telling of the history—which was three or four years—would say that it was a mixed outcome. In the latest restructuring the State Centre for Improvement of Palliative Care has ceased to exist and those responsibilities will be transferred to the new Palliative Care Network under the Agency for Clinical Innovation, which is one of the other four pillars.

Senator MOORE: I thought it sounded like a good thing.

Mr Cleasby : Much of the work plan for SCIP was in fact a good thing. It had a chance to see only some of that through, but we are not yet willing to say—

Senator MOORE: Do we think the work they have done should be sent back through the system?

Mr Cleasby : We believe that may happen but we are yet to see the reality of that for the network—it has not yet to be informed.

Senator MOORE: Are you part of that?

Mr Cleasby : I do not know.

Senator MOORE: Were you part of that before? Did they consult regularly with you? Was that part of their job?

Mr Cleasby : SCIP used the New South Wales Palliative Care Advisory Group for a lot of consultation and feedback and Palliative Care New South Wales historically has supplied the chairperson for that group. Again, that group does not exist at the moment, so we wait to see.

Senator FIERRAVANTI-WELLS: I want to take you to your recommendations, most of which appear to be New South Wales focused, taking on board that we cannot direct the New South Wales government how to do its business, although we can when there is money from the feds. To focus on the recommendations pertaining to the aged care sector, you may have heard some of my questioning earlier about the recommendations of the Productivity Commission. Indeed, you specifically pick those up in your submission. You obviously favour the suggestions made by the Productivity Commission in relation to an entitlements system. Have you given some practical thought as to how that could occur?

Mr Cleasby : I think the short answer is no. We have a number of examples of collaborative and maybe relatively innovative, for New South Wales, models of influencing care within the residential aged care space. Many of our views on the things we felt we were responding to where an acknowledgement within the Productivity Commission report that end-of-life care is a core business for residential aged care, that people need to be appropriately trained in competencies that supported that—we value that. Clearly we would take the view that all non-specialist providers of palliative care should have competency to appoint. They cannot be expected to do absolutely everything if someone becomes more complex. So they should have some form of relationship or buying in—I do not know what it is—with specialist palliative care services. Possibly relating to the answers given by the previous presenter in relation to your question, I know that in New South Wales we have an interesting mix of publicly funded palliative care services as in they work for the New South Wales Ministry of Health and the third schedule palliative care providers as in non-government entities, mostly of a charitable religious nature, who tend to be the ones associated with many of the beds for palliative care, the historic hospice model. For publicly-funded palliative care services, we often take the view that we just go wherever the need is. So, for example, the service that I am personally associated with sees people in residential aged care if that is what the general practitioner wants. We do not see it as a hard or soft barrier; we just go and provide our expertise to try to support the services to deliver. In the current arrangement, we would say that should be what happens because we have expertise that can help and we should take that expertise where it is needed. Because the Commonwealth pays our salaries, we do not see any reason not to flexible about that. If we had to generate funding for ourselves by some other model, then we might be rather more selective about who can and cannot buy our services. That would be a terrible arrangement as far as we are concerned because of our belief in broad access and equity of that access across the system. So I guess the other answer is, no, we have not really thought about that operational detail in relation to the proposals, it is just the general broad picture that we felt positive about.

Senator FIERRAVANTI-WELLS: It was clear from the Productivity Commission, in their considerations et cetera, that their entitlement system would probably be something like a Medicare schedule, with an item on which a whole series of other items go. If that were the case, do you think that that is going to be an opportunity or an avenue by which it is going to help the sector develop workforce generated spin-offs. If you have got an MBS item, then there is a funding source and therefore you are going to be able to attract more people into that workforce or you are going to be able to better pay those people in that workforce. Do you see those workforce spin-offs—if I can put it that way—as one positive way of moving to an entitlement system?

Mr Cleasby : Yes, if it looks at more flexible thought about who might be providing those services.

Senator FIERRAVANTI-WELLS: Presumably there will be a list of items, with various people in the profession, whether they be general practitioners, palliative specialists, allied health professionals et cetera, who could get those MBS items.

Mr Cleasby : Indeed, particularly if that included nurse practitioners.

Senator FIERRAVANTI-WELLS: Sorry, it was not an exhaustive list.

Mr Cleasby : I appreciate that, but we think that nurse practitioners are an under-explored service delivery model, particularly specialist palliative care nurse practitioners.

Senator FIERRAVANTI-WELLS: Particularly out in the community?

Mr Cleasby : Out in the community and in residential aged care, but of course there are some delicate negotiations that have to happen with the general practice workforce in relation to that. I am a realist after all my years in the sector, I am afraid, Senator.

CHAIR: If we had a buck for every time we have heard that in this committee, this committee could fund a lot of charities.

Mr Cleasby : I understand that.

Senator FIERRAVANTI-WELLS: However, that nurse practitioner could be part of a general practice, a general practice surgery, and be on a retainer or whatever—I am just thinking off the top of my head, but there are ways and there are ways.

Mr Cleasby : It could be a memorandum of understanding between the specialist service and the general practice.

Senator FIERRAVANTI-WELLS: Or whatever, but I take very much your point, yes. Sorry I interrupted.

Mr Cleasby : No, I may have confused myself. I think I have lost my train of thought, I am sorry, Senator.

Senator FIERRAVANTI-WELLS: I was just asking in terms of exploring that, but I think you have answered that. Also, as part of recommendation 25 you talk about the need to:

... strongly engage with the Australian Department for Health and Ageing in the proposed review of barriers to the provision of short term intensive health care services in the aged care setting.

Do you mean by that that aged care facilities be able to provide a lot more services than what they otherwise are now able to do, under more flexible arrangements where funding could go to the aged care facility to do certain things? Is that the sort of thing that you are talking about?

Mr Cleasby : I am, and possibly if I could use an example: currently my experience is that we have the high-care/low-care divide, which is possibly a divide to be lost over time, but at the moment it exists. One of the challenges we find as a palliative care service that works in the community is that many low-care services that are trying, quite rightly, to operationalise ageing in place eventually come to the point of dying in place. Our experience, particularly for freestanding low-care facilities at the moment—and this has been an issue raised with Palliative Care New South Wales from both rural and metropolitan areas—is that they reach this point and want to keep the resident and want them to die in the facility.

CHAIR: Won't they have moved into high care by then?

Mr Cleasby : They should be able to be reclassified as high care, and you would think that that therefore would bring a change to the funding model. Unfortunately what we discover is that they do not know what they do not know in terms of the requirements around 24-hour end-of-life care. For example, who is going to be there to address a symptom need if a symptom need occurs in the evening or the early morning? One of these facilities recently advised that they had a care manager who was a registered nurse who came in one afternoon a week.

Senator FIERRAVANTI-WELLS: Like retirement villages where people are ageing in place in the retirement village?

Mr Cleasby : Yes.

Senator FIERRAVANTI-WELLS: That brings into question, for example, whatever the requisite New South Wales legislation is—or Victorian or whatever, because they are not all the same.

Mr Cleasby : Yes. I guess what we were touching on there was: to support that notion, there needs to be some flexible and quick-to-generate ability to say, 'We actually are going to need to pull in some extra nursing hours for overnight,' or 'We're going to have to get a registered nurse here on at least a daily basis to look after the initial medications and then someone else to do some checking at various times.' So there is obviously a change to the resourcing required to look after this person, which ideally should be met simply by their modified care needs, but we often find there are additional things on top of that.

Senator FIERRAVANTI-WELLS: Which the facility may not be—

Mr Cleasby : Experienced with.

Senator FIERRAVANTI-WELLS: Or have provision to provide. In an entitlement system, they can bring the service in—

Mr Cleasby : That would be right.

Senator FIERRAVANTI-WELLS: because Mrs Smith in unit 15—leaving aside reassessing her or whatever, and one assumes that that process will occur and she is under whatever assessment mechanism—is reassessed as needing certain services and so they bring them in. But, under that system, effectively somebody has got to coordinate it. Let us assume it is a retirement village setting. Are they the ones that do that? In that situation, do you see a role or an item number for an appropriate person in that residential aged-care facility to be the coordinator of that care? How do you see that? Can you just think about that for a moment? Do you have some thoughts on that?

Mr Cleasby : We certainly would not be advocating that the palliative care service becomes the coordinator in that context, because they know the context, they know what resources they have, they know what their experience is best. I think that would be completely appropriate for there to be an item number for them to pull together, to identify. Clearly it is normal process in an aged-care facility to generate a care plan. It is the detail in that plan and the operationalisation of the elements in that plan that are where it gets a little bit less than comprehensive or less than complete at times. They could then be linked to a new schedule of items that could be almost like a buffet, I suppose—that is what it is ultimately, I suppose: pull in this, pull in that. We are the ones doing the coordination, so we need to have some recognition for doing that, being the local place. So I see that as working pretty well.

Senator FIERRAVANTI-WELLS: Is it likely to work better if your retirement village is adjacent to an aged-care facility, where there is that synergy between the two? Is it more complicated where it is a stand-alone retirement village?

Mr Cleasby : Absolutely, and that is our experience now. In one example in my region, a low-care facility that was freestanding entered into a formal agreement arrangement with a high-care facility so that they had a pathway should the need arise and they identified that they could not achieve end-of-life care. There was a rapid transfer over to their high-care facility under their agreement, which we thought was very innovative and a great idea.

Senator FIERRAVANTI-WELLS: An entitlement system would facilitate that even more. Chances are that that retirement village could also enter into potentially some sort of arrangement with a nursing, community care or whatever organisation and do it that way. I am conscious of time.

CHAIR: Have you got one more question?

Senator FIERRAVANTI-WELLS: My question is in relation to your case study, Mr Cleasby, that very well illustrates some of the issues that we probably touched on to do with the interface with the residential aged-care facility. Is there anything further that you wanted to add?

Mr Cleasby : Not really. Before leaving the issue of aged-care facilities, I would like to quickly touch on what might be considered double discrimination. We very much want people to receive the right care for them in the place of their choice wherever the resources permit that to happen, whatever that might be. We have a situation now in New South Wales where, with people who are simply registered with a palliative care service, somehow a suite of clinical decision-making processes gets turned off because of that label when they perhaps present at accident and emergency.

Our accident and emergency areas are very difficult places. I would hate to work in their personally; I acknowledge that they are tough gigs. Very often there is a feeling of, 'Why is this person arriving from the residential aged-care facility?' Good palliative medicine and good palliative care always says: 'Hold on. What is this person's clinical situation? What is reversible? Let's reverse that if there is no great burden in doing so, because that may contribute to an improved quality of life.' Because we know that they are expected to die in the coming months does not mean we do not deliver care now if that care makes a genuine difference to their quality of life and wellbeing. Yet we see this creeping in because of the pressure in the system. I think a palliative care residential aged-are person has the risk of being double discriminated against in terms of unintentional clinical biases in people's thinking about, 'What are we going to do for this person?' I think it is a real risk. We are seeing it now. With due respect it is a product, I know, of the great business and pressure in a number of our clinical areas, but it does rile a number of palliative care clinicians when there is a possibility of introducing a treatment or an intervention that will contribute to improved quality of life for the time remaining, and there is in fact no great risk in doing this, and it does not get considered. It really does our head in, and it is not right for the patient. Again, it should come back to every individual person—what are their care needs and what is our ability to meet those care needs and what can we marshal to do that?

Senator BOYCE: I have a couple of questions on the definition of palliative care. I think the Royal Australasian College of Physicians initially suggested using the WHO definition. You have given us quite a lot about the various views on what palliative care is. But where does Palliative Care New South Wales stand?

Mr Cleasby : I made comment to you that you have met much in the way of language and, again, as a clinician since the early eighties, I have been stunned at how often even the palliative care sector itself can invest so much time in trying to figure out who we are and what we do, when to me it has always been bleedingly obvious anyway.

Senator BOYCE: Like the four pillars.

Mr Cleasby : There were the four pillars of palliative care. Has anyone mentioned those to you? The Commonwealth is to blame. The four pillars of palliative care funded by the Commonwealth are the PEPA program, the PCOC program, the CareSearch program and NSAP. We decided when we put this document together that we would get into trouble one way or another, because we consulted with the palliative care community in New South Wales and found that they were actually divided. There were those who viewed palliative care in a particularly narrow way. I had a palliative care physician once say to me that the definition of a palliative care patient is someone who has registered with a palliative care service; if they not registered with a palliative care service they are not a palliative care patient. I thought that was exquisite in its simplicity but sort of missed the point. So we decided to do this. I think the biggest problem has been more about defining the role of specialist palliative care services in relationship to other services which do meet palliative care needs in different ways and in different situations.

Senator BOYCE: For the HACC type services? You are not thinking about the ones where they might service people who are also not high-care patients or are you simply talking about the other healthcare ones?

Mr Cleasby : We had that problem in New South Wales, about HACC not doing palliative care patients. We thought we resolved it. Is that what you are talking about?

Senator BOYCE: No. I am just saying organisations that might have patients who are palliative care and patients, or clients, who are not palliative care. Is that what you are talking about or are you talking about the allied health groups such as OTs et cetera.

Mr Cleasby : No, we are actually talking about the care provided by a group of clinicians whose full-time job is to deliver palliative care versus the palliative care work that is undertaken by oncologists in certain situations and general practitioners in certain situations and renal physicians in certain situations. They help to meet palliative care needs. That is our role with the delineation framework model in New South Wales. All those other clinical providers meet certain palliative care needs but cannot be expected to meet complex palliative care needs and at times they will need support to deliver the palliative care that they currently have responsibility for.

Senator BOYCE: By a palliative care physician?

Mr Cleasby : By a non-palliative care physician. All they need is a proper palliative care team to do their work. This should have been clearer, and I apologise for not making it clearer. The rollout of the actual framework in New South Wales, which is the model we are meant to be operating under, says that there is a group of people who have palliative care and end of life care needs and who only ever need to be seen by their general practitioner or their gerontologist and they do not need anything from a palliative care service. Then there is a specialist palliative care service, so the next group mainly get looked after by these other sources but sometimes need help from a specialist palliative care service. The last group—which of course is the smallest group—have complex needs and their needs are only best met by a specialist palliative care service. It is a wonderful little pyramid with nice lines, but it fails completely. What we find is that, for example, the assumption that general practitioners have capacity to do general practice palliative care is a mixed picture. If they only see two or three deaths a year we cannot really expect them to be totally on the ball about everything that they might encounter and if a person has a particularly difficult clinical presentation then it is not necessarily within their scope and experience to be able to meet that person's palliative care need. If their pain is not being readily resolved or if their nausea is a little bit more tricky than usual, then they need to be talking to the specialist palliative care service to get some support and to input. So this is why we said in our submission earlier that specialist palliative care is the bedrock of all palliative care but specialist palliative care is not delivering all palliative care—we understand that and so we try to make that distinction in our language, to separate that.

Senator BOYCE: Do you see any difficulties in going about funding or setting standards for palliative care if we do not agree on a common definition thereof?

Mr Cleasby : Absolutely. It is problematic. At the end of the day you will never please everybody, so if someone wants to move ahead and make a decision I might like it or I might not like it but I have got to live with it regardless and work with it. Also, this is a New South Wales one. As I said, we consulted the palliative care community in New South Wales and they were divided about what should be called specialist palliative care and what should be called palliative care. Palliative Care Australia itself put out a glossary nearly 10 years ago to try and control the language in this space. That was ignored. Different people still take it to mean what they think. This actually has a bearing because when bureaucrats or even governments talk about initiatives in palliative care, I always ask myself which palliative care they are talking about and if it is actually going to benefit my service—my specialist palliative care service—or if it is about meeting other types of palliative care needs. I believe in the UK—and it is language that I tend to adopt, though it is not necessarily the language here—it is about specialists and nonspecialists. Specialists are simply people who work full-time in delivering palliative care.

Senator BOYCE: Medical specialists?

Mr Cleasby : Again, the word 'specialist' is loaded, isn't it?

Senator BOYCE: Absolutely.

Mr Cleasby : To me, 'specialist' means being focused, disciplined—what I do full time. It does not mean medicine only; it means medicine, nursing, allied health and all of those things.

Senator BOYCE: But to some people it will mean medical only.

Mr Cleasby : Yes, absolutely, and that is problematic.

CHAIR: We are going to have to move on, Senator Boyce.

Senator BOYCE: I am happy to stop there, Chair.

Mr Cleasby : I would just recommend that, in your marvellous output—whatever that might be at the end of the day—you agree amongst yourselves what you mean by the word, regardless of who does or does not share that understanding. When I read your document and your findings, I will know what it is you mean, and that is what matters.

CHAIR: Yes, that is a good point.

Mr Cleasby : Which is what we tried to do in ours.

CHAIR: Senator Smith.

Senator SMITH: I have a question about something you mentioned a moment ago. Throughout the evidence today, I have been conscious that people have often referred to the palliative care experience in the United Kingdom. In your experience, is the United Kingdom model one Australia can look to when trying to find some international experience?

Mr Cleasby : We view England as the home of the modern palliative care movement. We very much see it as where so much experience started and has grown and spread out to other Western areas. Canada, Australia and, to a different extent, Ireland have models that are not dissimilar to the English model of palliative care. Certainly, England itself has a much more developed palliative and end-of-life strategy. They have spent a lot more time working on these things. They have some very solid documentation. They do not have a federated system in the way that we do, of course, so that in itself allows them to do things that we maybe struggle a bit to achieve. So, yes, we do look to England. Not everything in England translates, though.

For example, they developed the End of Life Care Pathway, which was also a document, to help clinicians understand what the care needs are in the last days of life. It was a great idea and it transfers readily. A lot of Australian places are using the End of Life Care Pathway, and that is fine. The English also have something called the Gold Standards Framework, which is designed to support, in particular, advanced cancer patients in the community. So it is focusing very much on their community care, not their care in hospital. The problem with the Gold Standards Framework is that a fundamental assumption in that is what the general practice will do—and the relationship between government and general practice in the UK is markedly different from the relationship between government and general practitioners in Australia. For that reason, while the GSF has some good tools and processes, the assumptions 'you will do this' and 'you will take responsibility' do not translate. So it is difficult to translate some things.

I might mention to the committee—I should not but I will—that there is a new initiative in the UK that we are currently looking at bringing across, and it is called Amber Care, 'amber' as in the middle light of traffic lights. It is basically an attempt to bring what we in Australia have sometimes called the palliative approach—another bit of jargon—to acute care hospitals to try and help manage people who may be in the last year of their life but are not acutely dying. We really need to have a trigger to start putting some other plans in place for these people so that we do not leave it to the very last minute. It is a nice program, and we are hoping to see some piloting of that in New South Wales soon.

So the short answer is that there is much that we do learn from the UK. But, quite interestingly, when some of our clinicians go over to the UK now to talk about the way we do palliative care in Australia, the UK people are just stunned about our set-up. For instance, our access to medications in Australia is great. It is something that was done early and has been really excellent. While there may be issues in some locations, access to palliative care medications generally works very well in the community for many people, provided everyone plays their role.

In the UK they are also stunned by the fact that, where family is willing, many community palliative care services will support and teach family how to administer medications on a needs basis in the home for the person they are caring for—not when they cannot but when they do have capacity and when it is something that they are willing to do because it means that certain flexibilities and appropriateness in the timing of medication can be achieved in the home. Great swathes of the UK do not do that. They have nurses who go out and give medications. We could never afford that in Australia and have the number of people we have dying at home that we have now, even though we would like to see that number increase. So, yes, there are some things that just do not translate well from the UK system, but some things do.

Senator SMITH: In your evidence you suggested that there might be a risk in defining palliative care to close to the end of someone's life. Is there not a risk that we might define palliative care too far away from the end of someone's life?

Mr Cleasby : I think we are beginning to see evidence of that starting to happen now. The term 'supportive care' is creeping in.

Senator MOORE: Supportive and palliative.

Mr Cleasby : Yes—supportive and palliative care. The cynic says, 'I do not wish to be cast as such,' and suggests that supportive care is sometimes used because we do not want to scare the horses, because palliative care has become this—

Senator BOYCE: Someone said that this morning.

Mr Cleasby : And I think that is incredibly disappointing. About five years ago we talked about whether we should change our name, but I thought, 'What are we going to call ourselves? Orange Care or Rhinoceros Care, or something like that.' Eventually people associate whatever the word is with end of life, dying. That is just a reflection on us as a society, where we are at with their comfort zone about our inevitable mortality. It is not something that we entertain on a daily basis and we seek not to entertain it unless we really have to do. The evidence certainly is that good, specialist palliative care processes improve the quality of life for people even early in their treatment regime. So, if there is evidence around that, it suggests that it is an appropriate thing to do; however, specialist palliative care services are very stretched at the moment and a number of them have retreated towards the end-of-life space simply as a matter of survival.

Senator SMITH: As a resourcing decision.

Mr Cleasby : As a resourcing issue, yes, where they know that they can do what they can do for the greatest number for most of the time. That is what most clinical services can hope to achieve. It does not matter where you draw the line. I think the important thing from a health care systems perspective is: is the patient getting the best information and the best advice about their clinical management and their support, at whatever point they are in the journey? And: who are the people who can provide that? It is going to be a mixed model. There will be different people at different places at different times. We need to focus on the individual and their journey and meeting their needs. That is the better way to answer. Specialist palliative care will play a role, but the point at which they play that role may vary.

CHAIR: Thank you. As you did not take anything on notice, you might be the first ones today to get away without any homework.

Mr Cleasby : We are happy to respond to anyone else's comments at any time. I would like to quickly make a final comment. I know that my colleague would like me to make this comment. As long as we have a federated model, there will clearly be issues about who is responsible for what. What we want to say is that we have the situation in Australia where Palliative Care Australia, which works primarily with the Commonwealth, is the national entity and a good number of great things have been delivered—there may be some I might disagree with—and it is a strong relationship, but, unfortunately, at the state level across the country, the state bodies are struggling big-time to play their role with their local jurisdictions.

The comment was made earlier that you are not in a position to give directions to states, and we respect that, but I think this is a forum where I need to say that the state peak bodies, and New South Wales is certainly one of them—but we are not alone; it is, in fact, at least half the state and territory peak bodies—are struggling to survive for the next couple of years, having had decades of contributing to government, giving advice to government, giving advice to the community, supporting people in their search for palliative care services and delivering.

We have been given the opportunity by the Commonwealth to produce a document around advanced care planning, forward planning, for people with dementia specifically. The Commonwealth funded us to do that. We were delighted with that and we delivered on that as a state body. But, unfortunately, like a great number of projects funded over the last 12 years under the Palliative Care Program, it is not going any further, because there is no mechanism for it to go further and, instead, other bodies are now being funded to do the work that we have done. There is a problem with the coordination and I think the Commonwealth is missing out on an opportunity to get a better return on investment. There does not seem to be an overall strategic management of these projects and taking them elsewhere, and finding out what has developed in one state actually can be translated to another state without each state having to do it themselves.

Senator BOYCE: There is a real need to inquire into palliative care.

Mr Cleasby : It has been some missed opportunity and it is unfortunate for the sector because we are such a small sector and yet the work that is done in many of these things could make a real difference elsewhere if only other people could become aware of it and have the capacity to utilise it. We would like to leave you with some copies of that kit.

CHAIR: Thank you. Do you get any federal funding or do you get your funding from the state?

Ms Hansen : From the state. Most NGOs in New South Wales which are funded under this grant get the same amount of money, so it is an $80,000 grant per annum. That is all we get.

Senator FIERRAVANTI-WELLS: Are you the New South Wales chapter of Palliative Care Australia or a separate entity?

Ms Hansen : We are separate autonomous body and we are a member of PCA, as all the states and territories are.

Mr Cleasby : Members but not chapters, because we are separate identity under a separate constitution and separate incorporation.

Ms Hansen : The Northern Territory, Tasmania and now Western Australia to some extent do not have a funded association, it is all volunteer run. Queensland are in the same position as us with an $80,000 grant. Victoria and South Australia are slightly better off.

Senator FIERRAVANTI-WELLS: In other words, if Palliative Care Australia takes a particular stance on an issue it is often independent of seeking your views in relation to that particular approach, is it?

Ms Hansen : No, we are the members of PCA so we are effectively PCA.

Senator FIERRAVANTI-WELLS: So at least they have some accountability to you.

Ms Hansen : Absolutely, yes.

Mr Cleasby : Where they consult us, yes, they would be representing our collective view.

Senator MOORE: Basically their accountability is to consult their membership?

Ms Hansen : Yes.

CHAIR: Thank you. We will gladly accept your documents. You do not have any homework so I do not need to tell you when that is due. Thank you very much for your comprehensive rundown and evidence.

Proceedings suspended from 15:37 to 15:52