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Community Affairs References Committee
Palliative care in Australia

BOLITHO, Dr Leslie AM, President, Royal Australasian College of Physicians

VORA, Associate Professor Rohan, President-Elect, Australasian Chapter of Palliative Medicine


CHAIR: Welcome. I understand that information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. We have your submission, No. 29. I invite one if you or both of you to make an opening statement and then we will ask you some questions.

Dr Bolitho : The College of Physicians welcomes the committee's inquiry, and thank you for this opportunity to appear before the committee today. The college accepts the World Health Organisation's definition of palliative care as an approach that improves the quality of life for patients and their families facing the problems associated with life-threatening illnesses through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems—physical, psychological and spiritual—and this spans the spectrum of age groups, from children and adolescents through to old-age care.

The college advocates strongly for the shift of palliative care services from the hospital to the community. This reflects principally the patient's preferences and benefits the health budget as result. It is well-known that we face the perfect storm of an ageing population: increasing rates of complex and chronic disease and ever-tightening resources which are required to address these problems. Palliative care is clearly an important component of the health system for an ageing population, and for this reason we welcome the inquiry.

Palliative medicine, the medical care of patients whose disease is not responsive to curative treatment, requires a broad range of clinical and administrative skills. The only specialist training program available in Australia is administered from the college. It supervises and trains consultant physicians in palliative medicine and awards diplomas for palliative medicine to our general practitioner colleagues. There are currently 230 palliative medicine physicians and an increasing number of general practitioners who have been trained to provide the palliative care services. Approximately 50 per cent of patients would prefer to die at home or in their place of abode, including residential aged-care facilities, if they have the opportunity and the care. In addition, palliative care should be introduced early in the patient care process. Nearly 50 per cent of my patients are discharged after initial introduction to the palliative care services and are reintroduced at a later stage when they may require them later.

The focus of the college's contribution to this inquiry is on the terms of reference relating to the funding arrangements, the effectiveness and the range of palliative care arrangements, the composition of the palliative care workforce and advanced care planning. I will briefly address each of these points after which Professor Vora will make comments, and then we will be happy to answer your questions.

The funding arrangements have been in place for some time. Cicely Saunders initially introduced palliative care in the United Kingdom back in the 1980s. In the 1990s subacute care services were developed in Victoria and expanded to include palliative care arrangements for ambulatory and community care.

Funding arrangements for palliative care must be suitably flexible so as to encourage innovative service delivery, ensuring that the population has access to the right care at the right time and in the right location with the right provider. It is particularly important to respond to vulnerable populations with specific care needs, such as the older patients with dementia living in the residential aged care facilities. Funding arrangements must encourage palliative care services in a location that best reflects the patient's needs and the patient's choice. The college fully supports adequate funding for modern, responsive palliative care services which allow for this quality service. We welcome the Independent Hospital Pricing Authority's invitation to form a subacute care advisory committee comprising palliative care medicine specialists, geriatricians and rehabilitation positions. Many patients require palliative care which can be delivered by a multidisciplinary team. Specialist palliative care is required for those patients with chronic and complex conditions and it is clear that such cases are on the rise, increasing the demand for these specialist services. People nearing the end of life should have access to specialist medical care, including palliative care, in the most appropriate setting according to their needs.

The college recommends that specialist medical and palliative care services should be increasingly available in the primary, ambulatory and community care settings. This is particularly the case for our elderly patients in aged-care facilities and this requires particular attention. There is a need to enhance the delivery of specialist palliative care in these facilities so that they can be supported to die in their abode and in place of residence. We note that there are many exceptional local initiatives operating to link specialist care in these aged-care facilities and that funding should also follow with these processes.

The palliative care workforce consists of a multidisciplinary team including our specialist medical physicians, general physicians, general practitioners, nurses and other carers. It is clear there is currently an undersupply of our specialist palliative medicine physicians and, although there is a clear training program, there is need to encourage more people into these services. We have to also take into special consideration the rural, remote and culturally sensitive communities, including Indigenous health, and children and adolescent palliative care is another specific area requiring attention. We see the federal government specialist training program and the potential of tele-health's role in the training and supervision of trainees and provision of services to our patients as a step in the right direction. Many of the members of this committee will be familiar with the dual training pathways which the college is promoting in order to address underprovision of specialist services in rural areas. While this model currently focuses on general medicine paired with other specialties, there is potential that this could also include palliative care services in the future.

Advanced care planning allows patients with a terminal illness to set out their preferences regarding their end of life care and other affairs. The process is led by the patient, ideally in consultation with the family and their treating health professionals. Advanced care plans record the medical treatment the patient wishes to receive, the location of that treatment as well as the legal and spiritual wishes. An advanced care plan applied with the right advice in the right circumstances can significantly improve the patient's experience in the last phase of their life as well as assisting in the grieving process for family and loved ones. However, I have recently assessed these online services and found them difficult and cumbersome. There is a need to redevelop the websites and ensure that they are designed in a more friendly and useful way. However, it must be recognised that a patient's preferences may change, which can be complicated further if the patient has significant cognitive impairment.

Finally, I would like to mention to the committee that the college is commencing a project developing a comprehensive strategy towards the end-of-life care particularly focusing on the last 12 months of a patient's life. This will include the experience and expertise of our palliative care physicians, geriatricians, rehabilitation and general physicians. I would like to thank you for the opportunity to address the Senate Standing Committee on Community Affairs and ask Professor Rohan Vora to address the committee. We would welcome your questions.

Prof. Vora : Thank you very much. What I will do to follow on from Dr Bolitho, our president, is to run you through a series of dot points from what I would address as the coalmines of specialist palliative care, talking to many of my colleagues around the country. Most of us really see it as the coalmines, with the volume of work that has increased dramatically over the last few years and will continue. We see no light at the end of the tunnel.

Most of us who are service directors face the question of: do we face burnout amongst a lot of our clinicians—not just doctors but nurses and allied health as well—or do we decrease access further? I noticed earlier you mentioned three months. There are various ways of decreasing access, with various rules. Unfortunately, if we do not want our staff to burn out we have to adopt them.

End-of-life care for many of us is seen as the tyranny of the 'unknown unknown'—a phrase Donald Rumsfeld coined. Many patients do not get access to expert assessment, diagnosis and multidisciplinary team management. End-of-life care is often given with curative, not palliative, intent these days. Curative intent is often based on disease progression and length of survival as the measures; whereas palliative outcomes are based on expert symptom management, assessment of functionality, assessment of mood and cognition, carer support and advanced care planning as the core business of specialist palliative care. Community 24-hour care is seen somewhat as an aspirational gold standard. If patients need to be treated out of hospital adequately, we need to see it as a baseline requirement. Non-cancer patients require as much access to specialist palliative care as cancer patients, and all of us recognise that. Residential aged-care facilities need easy access to specialist palliative care.

If we are to achieve all of this, most of us are going to have to be funded to spend at least 25 per cent of our time, as the College of Physicians in the UK has said, educating and building capacity amongst the non-specialist workforce in end-of-life care. But this needs to be purchased under the new activity-based funding arrangements. All advanced disease multidisciplinary team meetings and clinics should have specialist medicine physicians attending. For example, in cancer, tumour stream MDTs and ward case conferences must have a palliative medicine physician attending. In non-cancer, heart failure, COPD and renal failure clinics, and multidisciplinary team case conferences once more must have a specialist palliative medicine physician attending if we are to get the early referrals and get appropriate referrals.

Mortality reviews are usually there to see whether you should have informed the coroner or done something different to avoid death. We have introduced a different type of mortality review and continue to do that. Mortality reviews, we believe, should also include expected deaths—that should be audited for quality of care, carer support and bereavement follow-up plans.

A sustainable specialist workforce needs to take into account an ageing workforce amongst our specialty, looming retirement and sustainable after-hours rosters. Funding, with block grants, needs to be ring-fenced for palliative care. The removal of the ring-fencing and putting it in as a general funding of sub-acute care does not work for palliative care. It tends to go to other areas. It needs to be population based, it needs to be based on geography and it needs to be based on demographic principles around socioeconomic groupings, Indigenous groups and the age profile of the population.

In terms of funding, the Independent Hospital Pricing Authority needs to look at purchasing palliative care activity, in-patient consultancy and community. And it must reflect the multidisciplinary team nature and the different settings of care. It needs to be based on outcomes. The National Health Performance Authority must look at clinical indicators around evidence-based end-of-life care performance measures.

Around the local health and hospital networks, which Queensland has decided to call the health and hospital service, every HHN—or HHS in Queensland—must be required to develop and end-of-life strategy covering the last 12 months of life. ANZSPM, a specialist society, has had a clinical indicator working group that has tried to develop these indicators, looking at evidence from around the world, and has basically developed five main domains. We are working closely with the college, as Dr Bolitho pointed out, to now look at a college wide, end-of-life strategy to cover the last 12 months of life. We are hoping that a clinical indicator set will follow this work. Thank you very much.

Senator MOORE: Your submission has some content about how you do training and what training is required for people who choose to be a specialist. I would like to get something on record about where the choice operates if you are a GP, a nurse, a physiotherapist or an occupational therapist. When you have your basic training and are working, what degree of that basic training engages with palliative care? It is my view that it should, but I would like to get some indication of what the basic training is. I would also like something on record about what you have to do by choice and by cost to develop into a specialist? Professor, in your dot points there were a lot of 'there must be's'. How do you get the people who must be trained and in place?

Prof. Vora : I will answer some of those. Putting on my hat as a service director, I can probably provide something on some of the other disciplines—

Senator MOORE: I understand you are concentrating on the medical side.

Prof. Vora : but it would obviously be worthwhile talking to Palliative Care Nurses Australia—

Senator MOORE: We will be.

Prof. Vora : and allied health in that field. We work very much in a multidisciplinary team. I will deal with medicine initially. With GPs, we are trying to look at general practice training also incorporating some amount of end-of-life care. A few years ago, within the college of GPs as part of the curriculum we developed two new components—one was oncology, which includes an end of life component; the other was specifically on palliative care as a component of the GP curriculum. How much of that gets taken up by the training providers is hard to determine. But it is there as a curriculum and it needs to be constantly updated and promoted.

Senator MOORE: Is it compulsory or optional?

Prof. Vora : I guess it is up to the training provider. The college no longer has control of its training program. It can provide advice but that is now by the training providers. How they engage with that? I guess the way the college of GPs can engage with that would be to look at that through their exam process. From the College of Physicians side, what we offer is a diploma for GPs.

Senator BOYCE: How long does that take?

Prof. Vora : That diploma takes six months. There has been some talk about whether there are other ways of doing it so that they do not have to give up practice for six months. That is something we will need to discuss in the chapter and work out. At the moment with the GPs who do it—and there have been a significant number; I cannot give you that number off the top of my head—there are certainly a lot of advanced training GPs who take it up as a special skills post and will go out often into rural general practice with that level of six months training and have a diploma.

Senator MOORE: What does that cost? You can take that on notice. Also, could you take on notice how many have done it?

Prof. Vora : Yes, I can take it on notice and I can get back to you about how many have gone through and done it. In terms of the chapter and training for specialist palliative care, it is three-year training program. Well over 50 per cent come from the general practice route and others come from the physicians training program or a small number that come from other specialists with a fellowship. It is a three-year program. It is like any three-year program; there are certain costs with it around communication modules and things, but they are not excessive. And you get paid as a registrar like any other advanced training program. We have GPs coming into it. Obviously, they have to decrease their income significantly for those three years.

The speciality of palliative medicine was recognised by the Australian Medical Council in 2006. I think it was recognised by the college in about 1998. It actually started going through the college in about 1988.

Senator MOORE: That is a bit of a gap, isn't it?

Prof. Vora : Yes. It is quite a process getting it through the AMC.

Senator MOORE: I am sure it is.

Prof. Vora : Unfortunately, when we talk about other disciplines, it is the only discipline that has a specialist palliative care training program. The nursing side in all our services is a real struggle because, if nurses want to train and have some sort of paper trail that shows they do have qualifications in specialist palliative care, they usually have to enrol in some sort of a master's program, which is expensive. It may not necessarily train them in the practicalities of providing symptom management, support and so on. It is much more an academic program. There are benefits, but there are also downsides. There is very little subsidy for nurses wanting to do that.

When you then move to allied health it is even more problematic in terms of trying to find that. Palliative care Nurses Australia has a set of competency standards which they are looking at once more to try and put some meat around it and hopefully then having some online modules and things. I would greatly encourage people to forward that process.

Dr Bolitho : Could I make a comment as a general physician in a rural community? We have supported three people to do their nurse practitioner in palliative care. Northeast Health Wangaratta was one of the leaders in promoting nurse practitioners in a number of different areas including emergency care, critical care, geriatrics and palliative care. We have been very actively involved and we have a very active group. It is all done by supervision from a distance. Our nearest palliative care resource is Barwon, which is in Geelong, which is 350 kays away. That leads to the problem, as you mentioned, of after hours when we get passed between the various after hours people who are oncall. It is often Caritas Christie at St Vincent's in Melbourne. You will often get a complete difference of opinion for your patients depending on what is going on.

We rely heavily on our multidisciplinary team for introduction. As I said, we introduce patients early, whether it be oncology patients, or patients with advanced cardiac disease or advanced lung disease. That is why I think that probably 50 per cent of my patients end up being discharged from palliative care because they become stabilised and we are using them for the increased resources and the family support that is required in a non-curative illness.

The oncology side of it is certainly one, but by introducing palliative care very on in the multidisciplinary team, they get to see you soon after your diagnosis, perhaps soon after your surgery or soon after your first presentation to oncology for chemotherapy or radiotherapy. Then it follows through. Once that phase gets through and the person is very comfortable and their family is comfortable we can then put them back in the community and reintroduce it at a later stage if we need to.

Senator MOORE: I was going to go a different way, but I want to follow up on that, and other people jump in as well. The term 'palliative' is certainly one that can be used in many different ways. The World Health Organisation one is fine. The fact that a patient and his or her family can have definition palliative and then move out of it and then back in is one that I do not think the system accepts.

Dr Bolitho : No.

Senator MOORE: I think the systems says that you actually are palliative and you had better die, and in Queensland it should be within three months.

Dr Bolitho : I strongly recommend that, in my personal opinion, palliative care is not terminal, end-of-life care, and convincing people that it is not end-of-life care and that we are not assigning them to the exit strategy. Can we change? We have looked at it for years to change the term 'palliative care' to a better term so that people understand.

Senator FIERRAVANTI-WELLS: Can I take you back to the comment and your definition? You talked about curative versus palliative and about 25 per cent of that is involved in the education process. Are we looking at a sustained community education program that has to face the difficult hurdle of families making the decision that palliative is not just about end of life but is about managing whatever is left of life and quality. That does include a quality component to it. Secondly, we have to engender into the system some degree of flexibility, which is hopelessly lacking at the moment. If I understand correctly, you are really talking about education plus a structural change. It is a combination of both those factors that will lead us to a better understanding that palliative care is not just the end of life.

Dr Bolitho : We talk about subacute care services in Victoria, which are probably the most developed in Australia. It is a completely different ballpark to what is in Queensland and New South Wales. I think you have to look at that. The subacute services are there to keep people in the community, in their homes, in their own place with whatever resources. It is a significant cost saving to the hospital system. We do not need to have these people in hospital and it is a travesty if we cannot keep them in the community. So we are looking at that funding stream to go into subacute care services. Admittedly, Rohan tells us that there is a competitive problem in the community in Queensland as to where the services go to. Increasing ambulatory care is the way to go and it is across the whole spectrum.

Senator FIERRAVANTI-WELLS: Isn't it also a situation where we naturally believe that the hospital is the best place for our loved ones? We have to get over that hurdle in the community, because I think that for families the tendency is always to think the hospital will help them get better. Isn't that part of the education process that is sadly needed to re-educate Australians, if I can put it that way, to get rid of some of that guilt? I think that is part of the process. We naturally feel that our loved ones should go to hospital because we are not doing everything possible if we do not keep them in hospital. I am just putting that to you as another hurdle.

Dr Bolitho : The cultural differences in family groupings are amazing. I have practised in and go on outreach to different areas. In one there is a big Mediterranean group, in the Ovens Valley, Myrtleford and around there.

Senator FIERRAVANTI-WELLS: I was leading that way, as you can tell.

Dr Bolitho : They would much prefer to care for their families at home. Just as an anecdote, we have recently been caring for a 92-year-old who has gone into an aged-care facility. He was complaining about the fact that there were no Australian nurses there. They were Mediterranean, they were from Asia and they were from everywhere. We said, 'They are the people who look after families by far the best,' and he went home later and said, 'I like this place now.' So it was a change in attitude. The educational component is about bringing in the issues of where the best care is, how we can support people in their homes, how we can get the families to look after them and what support they need.

I think the Indigenous people have taught us that you only go to hospital to die. They do not like going. Talk to them up in Darwin. They do not like going to the hospital, because you only take your relatives there so they can die. That is an education process in the community too.

Prof. Vora : I think it is a cultural change. The cultural change also needs to occur amongst doctors. In our service in Queensland we have renamed ourselves the Supportive and Palliative Care Service, the idea being that we get introduced very early as a supportive care service which looks at shared care, symptom management and all of those sorts of features. Along with it will obviously come advanced care planning goals of care and discussions around that, trying to get a surrogate decision maker selected. But we often find that we come along and even though we are called supportive and palliative care they think the undertakers have been introduced to come in and talk to them. It then requires a lot of discussion. When they realise what we actually offer, the families are okay with it.

I think the advantage of a specialist palliative care service is it can also talk to families about the possibility of getting some of this care out in the community. They do not have to come to hospital. Also, if we have the capacity, we can offer direct admissions into a palliative care unit without them having to queue up at an emergency department. We can do home visits, if we have the capacity to do it. We can do nursing home visits, if we have the capacity to do it. People get used to the idea that they can get expert care out of hospital.

Senator FIERRAVANTI-WELLS: That leads on to the questions that I asked Blue Care, and I would like to put the same to you. As you are aware, the Productivity Commission made certain recommendations about moving to an entitlement system. I have two questions in relation to that. Where do you see the sorts of items that can be put on an entitlement system? Do you see that we are going to ultimately be able to deliver more services if they are on an entitlement based system? Will that help both in the residential aged-care setting and in the community setting? Leading on, Professor, from the comments that you have just made, by having services available in the community if they are available to all Australians on an entitlement based system, as the Productivity Commission indicated, isn't that ultimately going to at least lead towards a better way of ensuring the sorts of outcomes that you are talking about?

Prof. Vora : Can I just clarify something? By 'entitlement' do you mean flexible care packages—

Senator FIERRAVANTI-WELLS: The Productivity Commission made certain recommendations and one of the recommendations that it made was to put aged-care services on an entitlement footing—whether that be, for example, like a Medicare type system. If the services were broken down in palliative care to a range of different items, say on a Medicare schedule, would that assist in terms of delivering more services and in terms of the comments you made earlier about the funding component of it being available to practitioners, whatever the speciality in relation to delivering those services? At the moment it is very inflexible. That is the Productivity Commission's sort of leaning and I am just asking you what your thoughts are in relation to that.

Prof. Vora : I am glad Les brought up the nurse practitioners, because that is an absolutely vital side. I see the nurse practitioner up there along with the palliative medicine specialist working side by side. It is what happens along the way. What happens to all the other nurses that are working their way towards that? I think the same thing with all the other disciplines. It is absolutely vital that we look at palliative care as a multidisciplinary sort of thing.

As to whether having a whole series of item numbers is going to solve that problem, it needs to be around the setting and it needs to be around the hours of care—if it is a two o'clock in the morning visit versus a morning visit versus a 10 o'clock in the morning visit or on the weekend—and you start to get into a range of other things. Another way perhaps of thinking about it is an entitlement around a package of care—for instance, 'This is an average package of care'. Certainly in Queensland, with paediatrics, they are starting to look at that.

Senator FIERRAVANTI-WELLS: It is like a hospital stay—it is worth X dollars per day for a person who has palliative care, and that includes a range of items.

Prof. Vora : In the US they have, say, six months and you can then renew it. So there are those sorts of ideas. If you have, say, six months in a palliative care journey, you list the sorts of things that you can have—for example, home visiting, home physios and a range of different things. That is probably a way of looking at it rather than each individual person going out and getting a fee-for-service type arrangement.

Senator FIERRAVANTI-WELLS: What is your ideal assessment team in terms of palliative care at the beginning of the process? This is a wish list.

Prof. Vora : A model was put out by the National Aged Care Alliance that included a lot of work from quite a few geriatricians, palliative medicine physicians and so on which was given to AHMAC back in 2006 or something. It talked about an extended aged-care team in the community that could look at elderly patients and palliative care patients and have a multidisciplinary team assessment. But, rather than the current ACAT team, which is really a gatekeeper to getting into nursing homes, it was actually seen more as a therapeutic team and it was there for GPs to be able to use. GPs could use lots of different components of it and the team would work very closely with both the GP and the primary care providers in the community. Along with it you would have the ability for expert care, with a range of different disciplines, because it is not just palliative medicine physicians or geriatricians; it is also a case of, 'What about an OT, what about a physio, what about a social worker?' They also need to be part of the case conferencing.

Senator FIERRAVANTI-WELLS: But isn't that going to be easier if, at various stages of the process—one would assume the Productivity Commission was thinking along those lines—you have got the flexibility of being able to introduce those various items as part of your plan? It is going to make it a lot easier to do than it is with the inflexibility of the current system.

Prof. Vora : I agree. And I guess activity based funding is looking at some of that, and the Independent Hospital Pricing Authority really needs to look at what it purchases, and that is where the item numbers are going to be important.

Senator FIERRAVANTI-WELLS: In terms of the College of Physicians, do the geriatricians come under your umbrella? Having gone through the process myself recently with elderly parents, geriatricians are very hard to find. How are we going to encourage more practitioners to go into these strands? With an ageing population, for older Australians to have to wait up to three months to have to see a geriatrician is a very—isn't this a major starting point here?

Senator MOORE: Can you just put on record what a geriatrician's pathway is. You have told us what it is for a palliative specialist.

Dr Bolitho : Can I make a comment as a general physician. Anybody over 90 is admitted to me automatically, as a general physician, in the hospital.

Senator BOYCE: Anybody over 90?

Dr Bolitho : Just as a round figure. I have active people. We took a 94-year-old grandma out yesterday for her afternoon tea. She walked in and had a great time. I have got 96-year-olds driving to the rooms to see me. I have got a 100-year-old who bounced in after an aortic valve replacement to see me—she literally ran up the steps. Age is not the determinant. If we could get rid of age as the determinant for seeing a geriatrician it would be fantastic. You do not have to put them in over 65—which is fairly sensitive for some people around here!

Senator MOORE: It is not automatically geriatricians. I think people have special needs with ageing.

Dr Bolitho : They have special needs, but it can be coordinated across the community by general practitioners—the same with palliative care. Our general practitioners are experts in palliative care. Some of them have done the course; some of them have not—they have picked up the modules. As a group of six general physicians, we provide the majority of palliative care and aged care in the region. We have not had a geriatrician in the last two months; we have got one who has come recently. We need general training across the spectrum of age that is not specific for an age related problem with geriatrics. It is a disease process and it is a dementia process, as we were talking about last week. It is a cognition problem. It is providing the services in the community across the spectrum, and it includes those who are much younger who have these problems too.

Prof. Vora : I would like to add that, whatever it is, whether it is the elderly population or the palliative population, ultimately it is all dependent on what the outcomes are that you are measuring. If you go under a paradigm of measuring acute care outcomes you are not going to be able to provide palliative care. You are going to be measuring different things. It is exactly the same, I would think, with the elderly population and pal care—we have talked about when palliative care should be introduced. Maybe it needs to be introduced really early and then it goes away for a while and then it comes back in again. Geriatrics is the same. With a diagnosis of dementia maybe that is where you need that sort of intense input, and then you do not need it again. It is fine under the generalists and everything else until it all of a sudden starts becoming a complex problem that does not seem to be managed properly. You need those outcomes measured along the way so that you do not go back to what I talked about—the tyranny of the unknown unknowns. People are supported, they know who to phone to get advice and they know they can phone at any time, day or night, to try to get that advice because there is an identified area for which those geriatricians or palliative medicine physicians are on-call and can offer that sort of advice.

Senator MOORE: But within the dementia and Alzheimer's groups one of the core concerns is about someone being appropriately diagnosed. There are great complaints from the community that that diagnosis takes too long. My understanding is that formal diagnosis goes to a geriatrician. I am happy to be told I am wrong, but we get people coming before us all the time from the dementia and Alzheimer's groups. I am happy to leave that and we can take it up at another time, but it seems to be something that this committee has had—

Dr Bolitho : As a general physician, that is part of our background. We work very closely with our psychogeriatricians on the diagnoses and services, but it is a general physician area. Geriatricians have one focus on it. It is the same with palliative care physicians. They have one focus on it. But there are a lot of other people who are very well equipped in the community to be involved with that.

Senator SMITH: Gentlemen, your submission speaks to the variability between states, and you mentioned the good delivery of subacute services in Victoria. What states should we be looking towards as setting a high standard in this area?

Prof. Vora : Yes, I think Victoria is setting the gold standard. There are aspects of the South Australian model with their palliative care plan from 2009 to 2016 that are excellent. Even within Victoria it is very patchy. Once you then move to Queensland or other states it gets even more patchy. Metro South is very different from Metro North. As soon as you move out of Metro-anything you suddenly start thinking that maybe you have got to a rural area. It all depends. It is a question of Victoria having a process of consortia and trying to work out how all the population within that consortia area is managed from generalist to specialist for their end-of-life and palliative care? I think that is a model that really needs to be looked at seriously so that you can guarantee, for instance, in Queensland or wherever you are in Australia that you will get a high quality of palliative care. We are about to move to split everything up into all these health and hospital networks or services. I am not sure whether the variability is going to increase with those or whether there is some way of having the systems manager develop consortia to allow for some sort of data collection around palliative outcomes and measurement of performance with the National Health Performance Authority and funded properly through the Independent Hospital Pricing Authority purchasing arrangements.

Senator BOYCE: That leads into what I was going to ask you about. In your submission you talk about the variability of services even in one city. Is that because the hospitals tend to be the source of palliative care funding? Are you talking about Queensland? Can you give me an example.

Prof. Vora : I guess the most easy example to talk about is on the Gold Coast, because I work there everyday. On the Gold Coast we had to make the decision to cut beds and services because we just did not have the capacity without burnout. So we do not see nursing home patients. We do not really see any Indigenous patients, because we do not have community outreach that is able to do that. We do not have outreach to private hospitals. Our bed block has got worse because around 25 per cent of the time it is private hospitals taking up our beds.

We are the source of funding. We work very closely with Blue Care, Anglicare and Ozcare. We have really good arrangements and partnerships to do that. So with the very small amount of funding we think we provide across the population of some 550,000 a reasonable palliative care service except that there are these huge gaps. We are non-cancer. We see people with motor neurone problems and nobody else. With residential aged care we do not go into that 89 of them. We just do not have the capacity. These are the gaps which occur. If you then take it to each service, there are services which say, 'Yes, we will only see patients in the last three months of life. If they are not terminal, we cannot see them. That is not what we're trained for. We are trained to deal with a complexity of issues in the last several years of life.' You end up limiting it to that.

Senator BOYCE: You also speak of the fact that only about a third of patients who have life-limiting illnesses receive special palliative care and you think there are probably more who should receive it. Can you quantify that in any way? Is there anybody who is currently working on quantifying that in any way?

Prof. Vora : New Zealand has a very good study and certainly I can get details of that. A similar study in Australia would be fantastic. The UK has done a lot of work around their palliative care funding review which they had that last year.

Senator BOYCE: It would be useful to have a sense of who we are missing, which leads to the next question: how many palliative medicine specialists should we have per 100,000 population? Are you agreeing with Palliative Care Australia, 1.5?

Prof. Vora : In ANZSPM, the Society of Palliative Medicine, we generally go with a figure of about one per 100,000. PCA has a figure of 1.5 per 100,000. Most people think that figure is reasonable because you need to take into account, as I said before, a range of different issues: the age of the workforce, the retirement potential of the workforce, the increasing ageing of the population and chronic disease. We would say it is somewhere between one and 1.5 per 100,000, that would be a minimum. That is full-time equivalents, not people working part time.

Senator BOYCE: I am not sure we know the exact figure, but what do you think the Australian figure is currently?

Prof. Vora : There are varying figures. There is around 200 and there is 162 from Health Workforce Australia. We do not have the data to know what that is in full-time equivalents. The other issue is we really need to look at time being spent building capacity in the generalist workforce. That has to be purchased and with that we would probably be able to get away with that 200 or 300 figure quite reasonably and we are looking at replacing—

Senator BOYCE: So 200 to 300 full-time equivalent palliative care specialists nationally?

Prof. Vora : Yes, is probably what is needed nationally. The issue then becomes: are they all going to be in Sydney, Melbourne or Brisbane, or are we going to be able to get them out?

Senator BOYCE: Yes, I think is the answer.

Prof. Vora : And are we going to divide them into consortia so that, even if they are in Sydney, Melbourne or Brisbane, they have to provide a service to a big area?

CHAIR: I have a question for you to take on notice. Are you able to provide the AHMAC paper?

Prof. Vora : Yes, certainly.

CHAIR: That would be appreciated.

Senator MOORE: What about your leaflet—you were waving it earlier?

Dr Bolitho : I was going to talk on advanced care planning and the difficulty in accessing that and then on the other one from the Cancer Council on how to access those services. I can leave those with you.

Senator BOYCE: That is good because I was going to raise the advanced care planning/directives with other witnesses.

Dr Bolitho : And the Medical Treatment Act, which says that if you have not signed in for it, it does not count.

Prof. Vora : In Queensland, it is a 24-page document.

Proceedings suspended from 10:33 to 10:5 0