Note: Where available, the PDF/Word icon below is provided to view the complete and fully formatted document
Community Affairs References Committee
Palliative care in Australia

LUXFORD, Dr Yvonne, Chief Executive Officer, Palliative Care Australia

WHITE, Dr Ian, National Policy and Communications Manager, Palliative Care Australia


CHAIR: Welcome. I know that you know this process but I will take you through it anyway, because they are the rules. You would be aware of the issues around parliamentary privilege and the protection of witnesses and evidence.

Thank you for your very substantive submission. I now invite you to make an opening statement and then we will ask you some questions.

Dr Luxford : Thank you. I will start with a short opening statement so that we will have plenty of time for questions. I am sure that every person in this room agrees that our goal is to ensure that all Australians will be able to die with their preventable pain and other symptoms well managed, with the people they wish to be present, their cultural needs met and, wherever possible, in the place of their choice. Given that 49 per cent of the countries in the Asia-Pacific region have no palliative care provision, we are far closer to achieving our goals than most. In fact, we are amongst the world leaders in many aspects, yet this position does not change the fact that Australians continue to die in pain and distress, leaving a legacy of guilt and painful memories for their loved ones.

Access to palliative care in Australia is nothing short of a lottery, predominantly determined by your location but also affected by your diagnosis, the education of your health professional, your cultural background and your age. Palliative Care Australia is grateful that the committee has launched this inquiry into palliative care in Australia and suggests that improvements in a few key areas will provide a solid foundation for a contemporary palliative care system in Australia that enables all Australians to die well and to live well until the end.

We need to foster awareness across the general community and the healthcare workforce of death and dying as a natural part of life and that appropriate care for the dying and their loved ones and carers is a critical component of our health system. Supporting this understanding with resources suitable for our diverse population will empower people to make appropriate and considered choices about their end-of-life care. We need to ensure that all members of the healthcare workforce receive education in quality end-of-life care within the core curriculum of their studies and are further supported by ongoing, continuing professional development.

We need to provide equitable access to quality palliative care services when and where they are needed, and this includes both generalist and specialist clinical services in hospitals, hospices, residential aged-care facilities and private homes. Access must be available across populations, settings and disease categories, including dementia, motor neurone disease, cancer, heart disease, COPD, kidney disease, stroke, diabetes and all other complex chronic disease. Access should also include support to make and enforce an advance care plan and appoint a substitute decision maker. With such a plan included in any e-health records, an all advanced care plan should be recognised in law throughout Australia.

We need all levels of government to fund palliative care services using appropriate, equitable and needs based models. Funding needs to be flexible and delivered both as block funding and as activity based funding. Development of the new activity based funding models must recognise that palliative care is unique in its holistic and multidisciplinary nature and that its caring encompasses loved ones and carers in addition to the person with the terminal illness. We need to maintain an effective and appropriate high quality service through ensuring that all locations engaged in end-of-life care adhere to the national palliative care standards. Such national standards will ensure a basis for uniformed consistency in approach to palliative care across the country.

We need to prioritise palliative care in our research agenda, with appropriately funded and targeted research to address end-of-life issues in the clinical health systems and social domains. Palliative care in Australia needs to be recognised as integral to the provision of person focused care and also integral to the provision of care, comfort and dignity to all Australians as they live with a life-limiting condition. Palliative care in Australia needs to be recognised as integral to our health system.

PCA trusts that this Senate inquiry will be the start of a process of reform in palliative care in Australia, and we look forward to a positive outcome for palliative care patients, their families and carers. Care at the end of all our lives is far too important to be left to a lottery.

CHAIR: Thank you.

Senator MOORE: Dr Luxford, you said you hoped the inquiry would be a start. I am interested as to how your organisation, which is the core umbrella organisation for palliative care, sees the kinds of relationships with governments that there have been in the last 10 to 15 years, when palliative care really came on the agenda and programs started—palliative care plans, specific palliative care strategies and funding. It looks as if there have been those areas within government systems from about 2000. I am interested to see how the organisation views what has happened before this inquiry and whether you actually see this as the start of what is going to be a positive process.

Dr Luxford : Of course there has been an ongoing reform over time. Some states and territories are certainly addressing the need for reform very effectively, and there are various Commonwealth initiatives that are also addressing that need for reform, right up to as recently as last Friday with the aged-care package that was released, which also clearly recognises palliative care as important in aged care. However, there is still a lot of work to be done. We do tend to sit back on our laurels, in that we rate very highly internationally in delivery of palliative care but there is still a lot of work to be done. Palliative care is still not recognised in the integral way that it needs to be across the system. Part of that can be seen in the way that the subacute funding was delivered by the states. As far as we can see, palliative care received a very small part of the subacute funding. If you look at the implementation plans that the states released around the division of that subacute funding, one state was not intending to put any of the money towards palliative care. So there is still a long way to go.

Senator MOORE: That high rating which has been mentioned in a couple of submissions is really because it has been done poorly elsewhere. I know that is very simplistic. We do not rate second in the world in very many health areas. We are pretty well up on many, but second in the world is one of the highest ratings in any area of health delivery. The view is that that is great, but that is because it is so lousy elsewhere. Is that too simplistic?

Dr Luxford : That is certainly partly the truth. It is also the fact that there is Commonwealth government support for palliative care and there has been for several years now. That is also one of the reasons that we rate very highly: the national government supports it strongly.

Senator MOORE: You have an extraordinarily detailed submission, as we would expect because this is your business. Your PCA is very well regarded for the work it does. It has a large number of recommendations. The issue is that we are trying to find out exactly where the money is. You raise that and try to find the dollars. One of the core issues raised is the great variation used. It is like a lottery in that where people are, what conditions they have and, to a large extent, what advocacy they have around them determines what services they get. What would be the best way to stop that lottery? How should governments operate to achieve that? There will always be variation, depending on who you have, which doctor you have and those sorts of things. But what is the best way for our government, or for a Commonwealth government of any flavour, to respond to the huge discrepancies that you describe in your submission and which are echoed in others?

Dr Luxford : There are a number of aspects to the response. One is that we need to find out and get good data about how and where palliative care is delivered now. We do not really have good data at the moment. I understand that AIHW are doing some work at the moment around community based care. Last year they released something on hospital based care—in-patient care, including hospices. Even that data collection was, let us say, inaccurate, which I think they also would admit because it is the nature of the coding et cetera. We need to know how it is delivered now so that we know exactly how large the gaps are and where the gaps are.

We know it is difficult with most health care in rural and remote areas. There are just not enough services out there. Improvement in some telehealth type models will certainly help, and there is targeted funding at the moment around that with the NBN. That has not yet been released, but there is a call for tenders at the moment. Another way that we can look at it is to ring-fence some funding for palliative care in the funding that goes out to the states. If there is money going out in the subacute bucket, we need to ensure that there is money ring-fenced for palliative care. It is not necessarily the easiest thing for states to disseminate funding in palliative care. It is often easier to build a bed in a rehab ward than it is to set up a good palliative care service that reaches into the community or to better support such a service.

Dr White : In terms of shifting palliative care towards a primary healthcare area, into the community, it would be interesting to see how the Medicare Locals might fare in this new world that we are talking about. Of course, we all know that we are not too clear on what the functions of Medicare Locals will be, but ultimately you would think that they would be addressing the continuum of care, which we include palliative care in. Hopefully you would see the Medicare Locals working cooperatively and closely with the local hospital networks as well to ensure that continuity of care, and palliative care is at that level as well. I would be interested to see how they envisage themselves operating in this area of palliative care, end-of-life care.

Senator MOORE: Has there been any involvement with PCA in the development of Medicare Locals and local area networks? They have all gone out in the first round and have been operating for a couple of months. Has there been any interaction at this stage with various Medicare Locals, which all have their own individual identity? Are you aware of whether palliative care has been an issue that has been raised with them?

Dr White : Because, as you say, they are independent entities, they do have their core performance criteria to address according to the Commonwealth contract. Outside of that, they are quite free to look at the local priorities. Some have looked at palliative care. Personally, I can speak from the ACT perspective because I am on the ACT Medicare Local Board.

Senator MOORE: They have possibly considered it, then?

Dr White : I should think so, over the last couple of months or so. In that position you get to know what other Medicare Locals are doing around the country.

Senator MOORE: Sure, and the networks talk to each other.

Dr White : Yes, exactly. Hopefully that will continue, so we will have dialogue continuing as these Medicare Locals develop and evolve. Because palliative care is not that high profile, if you like, in the healthcare sector, there is a considerable amount of advocacy that needs to be done in this area, through Medicare Locals and through the boards being advised that palliative care is an important issue and that end-of-life care must be considered. It comes down to advising those boards about palliative care, and hopefully the process we are going through now is one measure to do that.

Regarding your question about other Medicare Locals, I have had discussions with other members of boards of Medicare Locals around the country. Certainly, when you talk about palliative care, it is like: 'No, we haven't really thought about that because we have a list of hundreds of other things that we see as priorities locally.' But, when you start to discuss palliative care in the sense that it is a public health issue and that it is an issue that really needs to be taken on board from a primary healthcare perspective, then they start to think, 'Yes, this is something we need to consider.' This comes back to the notion of Medicare Locals and local hospital networks becoming a bit more involved in it through our advocacy with, say, the AGPN and local hospital networks.

Dr Luxford : It should have been part of the terms of reference for Medicare Locals. It is illogical that it was not.

CHAIR: Have you provided that feedback to government?

Dr Luxford : Yes.

CHAIR: What did they say?

Dr Luxford : There was not a response. We certainly put in a submission around the terms of reference and the governance structure of Medicare Locals. We felt quite strongly that they had not dealt with end-of-life care. With the way it is set up, given that it is not set within the terms of reference, it is just an ad hoc arrangement if they are linked in with the local palliative care services.

Senator FIERRAVANTI-WELLS: On that point, what arrangements do you have with the divisions of general practice?

Dr Luxford : With the old AGPN, I have forgotten what they are called now—

Dr White : The Australian Medicare Local Network.

Dr Luxford : Thank you. They have just changed. We were certainly part of their consultation process around setting up the Medicare Locals and we are certainly advocating with them at the moment for a national program for GPs that is modelled after the Gold Standards Framework in Britain.

Senator FIERRAVANTI-WELLS: There are a couple of areas which I would like to explore if I may. Palliative care is closely associated with cancer. Do you have a handle on the percentages of how many people out there today need palliative care, how many of them have cancer and how many who have other than cancer?

Dr Luxford : Certainly anybody who has a complex chronic disease, which is ultimately terminal, can benefit from palliative care. That is not often recognised, as you heard this morning with the people from Alzheimer's Australia regarding dementia and various other chronic diseases. So basically everything except people who are dying from a sudden death can certainly benefit from palliative care.

Senator MOORE: Some of the submissions have numbers of how many people died last year.

Dr Luxford : Our submission tells you how many people died last year.

Senator FIERRAVANTI-WELLS: Is it between 36,000 and 72,000? I was trying to come to terms with that statistic. How many people are we actually talking about in a given year? Dr Luxford, do you have a handle on that?

Dr Luxford : Deaths in the last counted year was something around 140,000. I am just finding the page. There were 143,000 deaths. That is on page 35 of our submission. Realistically at least 80 per cent of those people could have benefited from palliative care in some form. That does not mean they are utilising a specialist palliative care service, but they could have benefited from palliative care from their primary care provider.

Senator FIERRAVANTI-WELLS: Taking you back to the evidence given by one of the wives who gave evidence before. I posed to her the question about care management and also the ability to draw from the system those specific needs that he had and whether that would have been, apart from beneficial to her and to him, ultimately more cost-effective in the system. Is that your view? The Productivity Commission has explored very much, certainly in terms of aged care, that possibility of entitlement. Have you done any work in relation to whether you think that ultimately that is going to be the most cost-effective way of dealing with palliative care issues in Australia—much more targeted?

Dr Luxford : To keep people at home and to have an adequate case manager et cetera at home and to be well cared for at home has to be more cost-effective than having somebody receiving what is ultimately futile treatment and investigations in an acute hospital setting. The reason that we spend more in healthcare on people in their last year of life is because they are receiving those extremely expensive treatments and investigations that they might not wish to have and are potentially of no benefit to them.

Senator FIERRAVANTI-WELLS: How would you practically see that happening? Explore that with me a little bit more.

Dr Luxford : There are a number of aspects, again. There is certainly a shift in the way that we think about provision of care, and that largely comes to education of our head healthcare professionals. Most healthcare professionals do not actually receive any education in palliative care. It means that in providing the best possible care that they can for their patients they are continuing to treat as opposed to actually referring to palliative care and recognising the needs of patients in that way.

Senator FIERRAVANTI-WELLS: Is part of that because of the way the MBS is structured—that there are certain areas where they can claim rebates in relation to that?

Dr Luxford : No, I really do not think it is about financial incentive at all; I actually think it is about just trying to provide the best possible care for your patient. If you have never received any education around palliative care, you are not going to recognise that is one of the tools you can use to provide that best possible care.

Senator FIERRAVANTI-WELLS: I guess it is looking at mental health. If you use mental health as an example, there was the expansion of mental health services through Better Access. By incorporating into GPs' daily workload mental health plans and referral of people through those plans, it has certainly made a lot more of our GPs aware in that way. Is that the sort of thing that you are thinking? I really just want to explore with you and use the time to ask you how you would see practical ways that you could achieve this.

Dr Luxford : That is a good point—looking at it from that viewpoint of the plans—because if you had GPs receiving a specific payment for helping with advance care planning, which at the moment they can access through various MBS items but there is no specific item number which would certainly raise awareness, it would raise the profile and it would also, hopefully, adequately compensate them for the time that goes into that. That may assist in helping general practitioners being more aware of the need for advance care planning and the need to recognise end-of-life requirements.

Senator FIERRAVANTI-WELLS: Is another problem the lack of specialists. Yes, we have our GPs, but at the end-of-life spectrum there does not seem to be too many specialists. Finding a geriatrician is like finding hens' teeth. I speak from practical experience at the moment. With an 83-year-old father and 82-year-old mother I am going through this process myself. It seems that we really do lack at that end of the spectrum people who are adequately qualified. Do we need to give serious consideration to deliberate ways to train more people in that specialty?

Dr Luxford : To build the workforce, definitely. We definitely need to make it attractive both for nurses, doctors and all allied health professionals to move into palliative care. They need to see that as an attractive career choice, definitely. But the thing is: if you are never exposed to palliative care in your undergraduate training, how are you going to know that this is an attractive career choice that you might want to move into?

Senator FIERRAVANTI-WELLS: Have you had this discussion with the colleges?

Dr Luxford : Obviously the College of Physicians includes palliative medicine as part of that college, although even within the College of Physicians palliative care is not taught across all the curriculum—they are separate curricula for each specialty. But there is certainly a program at the moment that is sponsored by the government called PCC4U—Palliative Care Curriculum for Undergraduates—and it has some reach into the various undergraduate curriculums of health professionals, but not nearly enough. It needs a lot more.

Senator MOORE: It is only a couple of schools, isn't it? In one of the submissions it actually says how many schools it is at and it is quite low.

Dr Luxford : It is quite low. It is taken up more by the nursing faculties. It needs to be much more broadly taken up.

Senator FIERRAVANTI-WELLS: Sorry, Senator Siewert, I just thought that was worth exploring.

CHAIR: Do you have a question, Senator Moore.

Senator MOORE: No, it is just the whole issue of training as it came up. One of the things that I think is something that needs to be looked at is the advance care directives. You have dedicated a significant chunk of your submission to it—and a number of the others have as well. We have had that discussion with the department. There seems to be some of those agreements nationally that it is a good idea, but how you actually do it. The evidence from one of the gentlemen from the Alzheimer's group was devastating: there was an inability to have the carers of his partner take any notice of what her clear wishes were. It puts it into perspective. You have recommended that there be a national system. I know Senator Siewert has asked that question a number of times.

CHAIR: Yes. I think you were here when the department gave the answer to my question. What is your opinion on how that is being rolled out nationally?

Dr Luxford : Can I first of all say—I am really embarrassed—but on page 12, we have had spelling gremlins in PCA this week. It says 'advanced' instead of 'advance'. I am very embarrassed by that.

Senator MOORE: We all read 'advance'; do not worry.

CHAIR: Yes, exactly. That is what your brain does.

Dr Luxford : I think it is fantastic that there has been the group which has looked at harmonisation of the legislation. It does not go far enough. We absolutely need single legislation across the country. Even though this is something that sits within the states and territories, in thinking about it, there is not really any reason why we cannot use the same model that we use for achieving national registration and accreditation of health professionals, where we had model legislation that was adopted in each of the states and territories with only minor variation. We have ended up with basically national legislation. I cannot see any reason why we cannot do that with advance care planning as well.

Senator MOORE: Are you aware of any opposition? Certainly, from your position you hear what the industry is saying. Is there any group that is opposed to it?

Dr Luxford : No.

Senator MOORE: There is no doubt that there is agreement amongst all the submissions. There is not one that has not said this is an issue. It has been taken up by governments as well. My understanding is that, when the health ministers of all flavours got together and the Attorneys-General of all flavours got together, they acknowledged it was a good idea. It is just moving it forward. It has come up everywhere. There is also linked with your submission the need for wider awareness and education on not just on this but the whole work that you do on making people more confident and aware in talking about death. That quite confronting breakthrough of the reluctance we have to talk about things, like preplanning for death and the whole issue around that it is going to happen, is one of those things that your organisation sponsors through the various processes. That continues to need to happen.

Dr Luxford : Yes.

Senator MOORE: It is also very sad, when you talk to people who do not know about the whole idea of an advance care directive, that they have no knowledge that it even exists.

Dr Luxford : That is right.

Senator MOORE: The Aboriginal and Islander stuff is another thing that I want to talk about. At this stage, we have not got any specific submissions only on that, although it has been mentioned in a number. But we do not have a specific submission from an Aboriginal organisation. From your work within PCA, do you have links with Aboriginal organisations that work with you about their needs, in particular, about what we should do nationally in this area?

Dr Luxford : Yes, we do. We link in with PEPA, which is Program of Experience in the Palliative Approach. I sit on their Indigenous committee. I am also fortunate to sit on the Close The Gap Steering Committee as well. We link in with various Indigenous organisations through those mechanisms. A couple of years ago PCA produced a position statement around the provision of palliative care for Australian Indigenous peoples, which we are updating at the present moment after a very large and energetic stakeholder forum, which we held in Cairns last August, that went very well. 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.

CHAIR: Do you have experience outside of Central Australia? I am aware that in Central Australia there is a group of dedicated people that are making sure that what you have just described happens. I am not convinced that it is happening elsewhere, where we still have end-stage kidney disease and other issues. Do you have experience outside Central Australia?

Dr Luxford : Sure, 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.

CHAIR: That takes me to another question. I said this yesterday as well: with all these submissions, you remember what they said but you do not necessarily remember who said what. This also crosses into one of our other inquiries, which is provision of health workforce and health services in regional and remote areas. When we had our hearings for Alice Springs for that inquiry the issue that has come up time and again is Aboriginal health workers and the fact that we have an ageing population of Aboriginal health workers and that it is hard to recruit more. There are issues around the fact that, since the certifications have changed, it is hard for people that are already working in the system to get out and to have time to access additional training. So when I read that submission talking about needing to skill up Aboriginal health workers, that is on top of the already very significant problem we have with recruiting and maintaining Aboriginal health workers. It is a really big issue that we are facing and we are about to face even more problems.

Dr Luxford : That is true. The PEPA program does specifically address issues from an Indigenous viewpoint and is specifically geared to take Indigenous health workers through that process, so it has a whole Indigenous stream as part of it that actually has location-specific resources in recognition that there are so many different needs around the country. Yes, I do also completely agree that we overburden the Indigenous health workers in the expectations of what we need them to do.

CHAIR: I entirely agree that they would be the best placed in many, many cases. I am just concerned that we are going to face a bit of a crisis there in the not-too-distant future.

Senator MOORE: Dr Luxford, you also talked about going down to the detail, and we heard about some of that from some of the previous witnesses about the determination of some people to stay in their homes, which is so important—if people have a home they can stay in. We get starry-eyed about how many people want to stay in their homes, but there are a lot of people who do not have homes to stay in. For people who do have that option, the amount of support they need around them to make that happen is quite significant. It is the availability of not just trained staff but the equipment and stuff they need around them. Your submission makes the point of access to that, for what period of time you get support in it and also the great variation in states about what the seeming definition of palliative care is. It certainly is a worry for me that states put a time limit on access to these services. It is bad enough that you are working it through with a family member or friend that you are caring for, but then you are told you can get the services for a set period of time. That is a factual circumstance, isn't it—

Dr Luxford : Yes, it is.

Senator MOORE: in some states like my own. How does that work?

Dr Luxford : Perhaps we can talk about a model that is doing it well.

Senator MOORE: Good, that would be great.

Dr Luxford : It might be, and then we contrast it. Silver Chain in Perth—

Senator MOORE: In WA. They are fantastic.

Dr Luxford : Yes. They are the only service delivery community based palliative care in the Perth metropolitan area, funded by the WA government through the various funding mechanisms. They have a fantastic service that supports multidisciplinary teams. It is predominantly a nurse-led service, and I am sure they can speak themselves further to it. They have figures of over 60 per cent of their clients dying at home—who want to die at home, obviously. Sometimes needs can change at the very end of an illness; people can change their minds about what they might want. They are certainly able to provide service that ensures that people can stay at home as long as they want to and to die at home also if necessary.

Senator MOORE: That is funded through the state government?

Dr Luxford : Yes.

Senator MOORE: There is no limit to how long that takes?

Dr Luxford : Not in my understanding although I cannot guarantee that. Not that I am aware of.

Senator MOORE: Whereas if you contrast it to my state where, at the moment, there is a limit to how long you can have the services. What is the limit?

Dr Luxford : Three months.

Senator FIERRAVANTI-WELLS: Dr Luxford, obviously you have put in a lot of work. It is a very, very good submission. I congratulate you. Can I just step back and ask you this question: do you think that, ultimately, palliative care should be Commonwealth funded rather than state funded? Do you think that part of the reason why there are issues, particularly in relation to service delivery, is because it is run through the states? That is a big question.

Dr Luxford : I guess there are two ways of looking at it.

Senator FIERRAVANTI-WELLS: But you can appreciate why I wanted to ask the question.

Dr Luxford : Yes. I think there are advantages and disadvantages. In one way a lot of palliative care is delivered through the hospital system, which is going to continue to be state based. It would be rather unusual for that to be purely Commonwealth funded and to be taken away from the others. There are some services which are now Commonwealth, such as aged care, and that is also variable in its delivery of care. Just having one funder does not guarantee that you get the best possible care or the best possible equitable division of funding. Perhaps what we need, rather than moving towards one funder, is for the funding to really recognise what is needed and the level of need out there and to ensure that the funding is fairly distributed.

Senator FIERRAVANTI-WELLS: If you had a case management situation and if you had, for example, Mrs Smith out in the community. In terms of her needs she has a case manager and she has certain needs. The concept of the funds following Mrs Smith rather than looking at her particular needs is still going to be very complicated to deal with because there will be times when she is going to have to draw as needs from a Commonwealth funding pool, then she is going to have to draw from the state funding pool. That is always going to be a complication in this area. Is there any way around that? That is really the question I am asking you. Will we continually have that issue? We are not going to ever be able to say, 'Well, this is Mrs Smith. If we gave her a package that could help her, but it is never actually going to be that way.' Do you see what I am getting at?

Dr Luxford : Yes, I do. I guess one could hope that, when the new gateway system is set up, if you are assessed through the gateway system as requiring palliative care, you would receive a package that would enable you to receive that care in an appropriate manner. One would hope that you will not need to keep running around to different locations. Of course, in that case I am only speaking about people receiving palliative care through the aged-care mechanism because the gateway is specifically directed at aged care. Therefore, with younger people receiving palliative care there may still be different avenues that you would need to look at. Potentially a case coordinator could be of assistance there. If that case coordinator is your general practitioner, we need to look at how we compensate them for that work because that involves a lot of time and effort.

Senator FIERRAVANTI-WELLS: In that sort of scenario is the general practitioner the best case manager?

Dr Luxford : They may be in that they may have the connections throughout the local system, or perhaps it could be the Medicare Locals who are the best people to provide those case coordinators.

Senator FIERRAVANTI-WELLS: That is not going to work. I do not want to get into a philosophical argument. The coalition's position on Medicare Locals has been very clear. I think Dr White said their areas of work at the moment are so great. I would not see palliative care being given to them as a way of achieving the need that is out there. It is very clear from the conservative figures that you have quoted. I assume those figures are conservative rather than being actually reflective of the need out there. I just cannot see Medicare Local coping with that system.

Dr Luxford : At the moment where it is working well in terms of coordination of care, such as the Silver Chain model that I mentioned before, it is usually a nurse-led model in terms of case coordination. But it really does include an entire multidisciplinary team that sits down and meets. So there is all that back-end work that goes into ensuring somebody receives the best possible care.

Senator MOORE: Dr Luxford, at some of the specialist hospitals that do provide the service, from my experience in Queensland, they do have the teams. They have the hospital based people that for whatever reason are in the hospital facility, but they do have the community based teams that are linked to that. I can think of three different services in Brisbane that are specialist hospital or hospice based but also have the community. They have that kind of team management model. They are nearly all nurse-led but have access back, as best systems do, to all the other medical, social worker and therapist help that they require. But they are all struggling for the effective funding. They already have the team model which is effectively based on any outreach model. I would have thought that that is probably what is happening across the country, where you have that sharing of resources. I am thinking specifically in Queensland of St Vincents in Brisbane, Canossa and a Buddhist based centre on the north side.

Dr Luxford : Karuna?

Senator MOORE: Something like that. Honestly, my mind is just not working well. They rely on having that intersharing of knowledge and commitment. They also run a big training process for volunteers. I know that your submission talks a lot about that level of engagement, where people who have some time and dedication come on as volunteers. Your submission talks about the fact that you need all people involved. You need the medical people, but it does not need to be formally medicalised. You need the people who have the community links. And you need the volunteer base. And they all have a role to play as required. That would all link back to how you have some form of case management, though. They are the kinds of models people have got to work with. They are not age specific; they are needs specific. I think that is also what your submission talks about. Every person needs their own case.

Dr Luxford : Sure.

Senator MOORE: Is that the kind of thing? You would be very much aware of these different things. But I think Silver Chain also has that. They can put people into care if they need it, but they have the community base. We have met with them a couple of times in this committee and they are very impressive.

Dr Luxford : Absolutely. Palliative care is inherently multidisciplinary in nature. That is simply the way it is delivered. You cannot detract from that. That is how it is. You put it very well. Thank you, senator.

Senator MOORE: It is also linked to the families.

Dr Luxford : Very much so.

Senator MOORE: You can talk about the person who is going through the illness or condition, but your submission and others talk about the fact that the palliative care is not just for that person. It is the interaction for all the other people who are caught up in the process. My discussions with people who work in the field say that a lot of their time is actually with the family. The people themselves are working through it in their own way but the family are the ones that need that quite specialist support—social worker, psychologist and even, to some extent, psychiatrist. You have to have that link. How do we fund it?

Senator FIERRAVANTI-WELLS: It was interesting to hear the comments that were made earlier by the lady who gave the evidence that the gentleman who was receiving care and the cat seemed to be quite content together but everybody else around them was stressing.

Dr Luxford : One of the concerns we have dealt with in the submission is around activity based funding, that the activity based funding model is very much that a service event is one patient with one clinician. It has to take into account that palliative care is not like that.

Senator FIERRAVANTI-WELLS: Can I just extend that to look at our culturally diverse community and the concept of the family and the extended family. You touched on it with the Aboriginal community. In the culturally diverse spectrum, family and extended family is very important. Dr Luxford, you obviously do work with different community organisations. Can you tell me a little bit about that work, if you do not mind?

Dr Luxford : Certainly we do. 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 exercise.

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.

Senator FIERRAVANTI-WELLS: How much more flexible do you need the system to be to enable you to do that? How much more flexibility would you like to see in the system?

Dr Luxford : I do not think there is anything systemic that is preventing us from engaging with those groups at the moment on an awareness-raising and advocacy level. It is probably around the level of funding that we have. Prioritising and connecting up with different groups is just something that we have not had the capacity to do to the extent we would like to thus far.

CHAIR: I do have a question around the aged-care announcement on Friday. Basically it is a question on notice. Your submission was obviously prepared before that. The committee would very much appreciate your thoughts on the announcements about the package, particularly for palliative care. You make quite extensive comments around how we think the aged-care system should be fixed. If you could take it on notice, that would be really appreciated. It would help us a lot. You have made comments here, some of which have already been picked up and some have not. Some you might think are adequate or whatever. Is that okay?

Dr Luxford : Absolutely.

CHAIR: We are all still getting our heads around it and I am sure you are still getting your heads around it, so some considered thought would be appreciated. I have a few other questions and I just have to go and find them. Did you want to say something, Dr White?

Dr White : Yes, and it goes back a couple of questions. It is about your questions about the role of GPs and Medicare locals. It struck me that one of the Commonwealth KPIs for the Medicare locals is the development of population health plans locally and I think that is probably where we have got inroads into at least alerting or making people aware locally and the GPs that there is a place for palliative care in the development of those plans.

CHAIR: I must admit that is where my mind was going when you were talking about limited inroads. It seems to me that that would be an area that you would have to deal with if you were doing that properly.

Dr White : I think so. That is the system's way of getting GPs to acknowledge and then get them involved somehow through the processes that come out of that planning.

CHAIR: Can we go back to the comment you made about getting GPs to start doing those advance care directives. Are you seeing the GP as being the person you go to—and, obviously, you initiate it—to start the discussion and then coordinate that?

Dr Luxford : It would be really valuable if GPs were involved in that process—and practice nurses as well. It could be devolved to the practice nurses. It is important that a healthcare professional be involved in the process. That would give potentially greater structure to the plan itself and would ensure that the discussion is kept to what is possible and what is not possible, so a realistic discussion about medical processes et cetera and what people might want. I think also that if it is initiated or encouraged by the general practitioner it is going to raise awareness for the general practitioner of what the needs of this person are and ensure person-centred care, which we are all hoping for. In general, it also ensures that there is that linkage between the patient and their primary care giver in those discussions. Perhaps it could be something that is flagged for every five-year update kind of thing, like your tetanus shot, so you just make sure that you keep getting an update—and it is a 10-year update for tetanus—because obviously your wishes may change. It needs to be a fluid process.

CHAIR: And you learn there have been advances in technology as well in care. So you learn through your experience.

Dr Luxford : Absolutely. Some of the best plans are not about specific things: 'I don't want this' or 'I don't want that'. They are more about what your beliefs are and what your goals of care are, rather than just specific medical processes.

CHAIR: Can I take you to the questions I asked earlier about HACC and what your experiences are around people being able to access HACC services to support palliative care.

Dr Luxford : We are hearing that there is a lot of confusion out there as to what people's eligibility is to the different packages. There is no clarity across the country. I think that is quite clear. It is unclear whether you can get HACC and still be receiving other funding on top of that. Some people are told they cannot receive funding for palliative care if they are already in receipt of HACC, so there is mixed understanding.

CHAIR: And that is through the states and territories? They are obviously getting those messages from the states and territories?

Dr Luxford : Yes.

Senator FIERRAVANTI-WELLS: One would hope though that now that it is all going to come under the Commonwealth umbrella those things would have been ironed out.

CHAIR: The problem is aged care is coming under the Commonwealth and disabilities are not except in WA and Victoria, which have not agreed to that. So I can understand where the confusion lies. Dr Luxford, if you have any other thoughts on that if you would send them in that would be appreciated.

Dr Luxford : Sure.

Senator MOORE: Dr Luxford, I want to get something on record about this. We were very clear when we were discussing the terms of reference that this is not an inquiry into the issues of euthanasia, and we have had many discussions about how we actually looked at the terms of reference and responded to the large number of submissions that still came in talking on that issue rather than on palliative care. So the PCA's point of view would be really useful about how the issue of euthanasia and people's very strong views about that impact on the discussions that we are having in the community about palliative care. When we are talking about issues of palliative care—and there is a lot of interest, as you well know—and also around the issues, perhaps, of advanced care directives, can that be coloured or impacted by the other range of debate about euthanasia? It would be just useful for our inquiry.

Senator FIERRAVANTI-WELLS: And, effectively taking it to the next step, do people see palliative care as equating to euthanasia?

Senator MOORE: Or get confused?

Senator FIERRAVANTI-WELLS: Or get confused?

Dr Luxford : It is interesting. To take the last question first, we did a consumer survey last May and we found that almost no people—I think it was only something like four per cent of people—confused palliative care with euthanasia. There is not that confusion. I know people tend to put scaremongering out there—

Senator MOORE: They do.

Dr Luxford : but in fact there is really not a confusion with the general public. They understand that palliative care is about helping you to live well to the end of life and providing that symptom and pain management. They understand that euthanasia is something quite different.

Palliative Care Australia is quite clear that euthanasia is not part of the practice of palliative care, but Palliative Care Australia does not take a position on euthanasia. We are a member based organisation and obviously there are a broad range of views of individual members within the organisation.

In terms of the discussion of euthanasia and how that impacts on palliative care, in some ways any discussion about death and dying means that people have a greater awareness of what people's needs are at the end of life, so that certainly has value if it is making people think about palliative care and ensuring that we get better access to palliative care and better funding for palliative care. So in that way the discussions about euthanasia have a positive impact. But it is interesting, when I speak to clinicians who are working directly in palliative care provision, that they tell me that it is very, very rare for a patient who is receiving palliative care to actually discuss euthanasia or request euthanasia. That is quite an interesting comment as well.

Dr White : PCA do have a position statement, and I think it is quite clear there that we are at arm's length with the notion of euthanasia being part of palliative care. Internationally, the evidence is quite clear that, where you have quality palliative care in place, there is very little need for alternatives like euthanasia. The evidence, as I said, is overwhelming that that is the case. It is only where you do not have that quality palliative care that these alternatives arise. It is probably good for me to raise that.

Senator MOORE: And to put it on record, because our own experience, as you know, with the friends group here is that we have had some extraordinarily interesting events, but at every one there has been at least one question about euthanasia. I do not think we are that different here—and they are different people. Also, when this inquiry was put out to the wider public, one of the things that happened almost immediately was a flood of submissions that wished to talk about their views about euthanasia rather than their views about palliative care. So it is very helpful for the committee to have your views about what is happening when we are putting our report together. Thank you for that.

Dr Luxford : Sure.

Dr White : Thanks.

CHAIR: Thank you very much. It has been a really useful discussion for us. Your submission is extremely useful and very detailed. We have given you some more homework. We do not need it back until the end of May, because it would be useful to inform our subsequent hearings and our next set of hearings is not until the winter break. If you could get it to us by the end of May, that would be appreciated.

Senator FIERRAVANTI-WELLS: Chair, I am just wondering whether we could leave the possibility of Dr Luxford coming back later—


Senator FIERRAVANTI-WELLS: depending on how we go.

Dr Luxford : We would like to return and I would like to bring back a clinician and a researcher into palliative care to speak with you too.

CHAIR: We will snap that offer up. We are getting the department back, so that would be very useful. We tend to finish up not necessarily always with a full day in Canberra but at least half a day, hearing from a number of people, so your offer is appreciated and accepted, thank you.

Dr Luxford : Thank you very much. Thank you for your time.

CHAIR: Thanks.

Proceedings suspended from 10:50 to 11:11