Note: Where available, the PDF/Word icon below is provided to view the complete and fully formatted document
Community Affairs References Committee
02/07/2012
Palliative care in Australia

COLE, Associate Professor Andrew Malcolm Dermot, Chief Medical Officer, HammondCare

MACLEOD, Professor Roderick, Senior Staff Specialist in Palliative Care, HammondCare

MCVEY, Dr Peta, Clinical Nurse Consultant, Palliative Care, HammondCare

RAGUZ, Ms Angela, General Manager, Residential Care, HammondCare

CHAIR: I welcome representatives of HammondCare to today's hearing. I understand information on parliamentary privilege and the protection of witnesses and evidence has been provided to you all. We have your submission, No. 41. I invite you to make an opening statement and then we will ask you some questions.

Prof. Cole : We, members of the staff of HammondCare, would like to thank you very much for the opportunity to appear before the committee today to explain and clarify the submission made to this committee on behalf of our organisation. Each of us works in HammondCare and is linked with other organisations in varying ways to address the different issues we have raised in our submission to your committee. I am conjoint associate professor at the University of New South Wales. I work mostly in the areas of oversight of research, study teaching, training and funding arrangements for patient care in our subacute hospital and community settings.

Two nursing colleagues are here today. Ms Raguz is the manager of our extensive network of residential aged-care facilities and she has particular responsibility for the launching and operation of a dedicated, high-level nursing care/palliative care suite within our flagship aged-care site in the Hammond Village in south-west Sydney.

While much palliative care rightly focuses on the needs of individuals with cancer and progressive serious medical diseases that cannot be cured in the healthcare system, similar needs of frail, elderly persons in residential aged care remain unmet at anything like the same level of intensity. This is despite the fact that almost all of our aged-care residents will die within their residential aged-care setting.

Dr Peta McVey, our palliative care clinical nurse consultant and conjoint lecturer at the University of Sydney has worked and published extensively on the need to identify individual people with declining health and palliative care needs in residential aged care, particularly in lower level care settings. This has been both to identify needs and put in place training programs to provide better skills for nursing and other members of staff providing care for these individuals as well as identifying local clinical champions at residential aged-care sites who can advocate for care and support other staff in that facility to provide care.

Both Dr McVey and Professor Rod MacLeod have recently commenced work within the new HammondCare clinical training centre at Greenwich Hospital, one of three workforce training and research centres recently established within the HammondCare network. Professor MacLeod has a conjoint professorial appointment with the University of Sydney and extensive experience in developing and supervising undergraduate and postgraduate teaching programs in palliative care.

All of us are most concerned about the very small amounts of clinical teaching time given to healthcare students—medical, nursing and allied health—as they learn about end-of-life care compared with, for example, the time given to learning about the care of infants and children. In my own university, the medical students would spend a term in each of first, second and third years learning about beginnings, growth and development and they would spend about a week learning about palliative care and care at the end of life. At Sydney university, they spend about half a day.

Professor MacLeod is particularly interested in spiritual and emotional aspects of care towards the end of life, where discussions around the advanced planning of care and the accurate and consistent recording of individual family wishes about care at the end of life, using both traditional paper based and new electronic forms, are very important. That gives you, I hope, an idea about our areas of interest. If you wish to ask questions on our submission as we go through, we will answer according to our expertise.

CHAIR: Thank you. Does anybody else want to make an opening statement? No. Senator Moore.

Senator MOORE: I do not know HammondCare well but from your submission I take it you specialise in aged care. Is that right?

Prof. Cole : We are an organisation that has both subacute hospital services and residential aged care. Two halves of the organisation came together about four years ago. Our hospital services, particularly in palliative care, have been going since 1907 and our aged care services have been running since the early 1930s.

Ms Raguz : We have our home care services as well.

Senator MOORE: And that is New South Wales-based?

Prof. Cole : Yes, entirely New South Wales.

Senator MOORE: I think I have in mind a similar organisation in Queensland, which is where I am from. In terms of end-of-life care and palliative care for high-care placement in aged care, I want to see whether you agree with my view that most patients who are actually going into a high-care facility are in fact palliative care patients in that once you have been defined as high care the current stats are such that people are not in aged care high care for extensive periods of time, they are there at end of life. Is that a fair assessment?

Ms Raguz : Probably yes for the most part, but one of the areas of specialty that HammondCare also has is in dementia care. So there is often the person with high-care needs in dementia who may not necessarily be terminal at that stage. Even though we know that it is an illness that will lead to death, it could be two or three years or five years or seven years down the track. But mostly yes.

Senator MOORE: Ms Raguz and Dr McVey, you are the ones who took the particular program in your one facility with the specialist dementia area. Can you tell me how that works as contrasted with your standard high care facility, as you describe it in your submission. What is the difference between going from high care into this particular unit?

Ms Raguz : Into the palliative care suite. The difference is firstly and foremost in the training and skill level of the staff. The staffing levels are greater within the palliative care suite. Access to specialist nursing and specialist medical support is there because of our link with Braeside Hospital and the palliative care team. We have set up a partnership where there is a 24-hour on-call telephone advice line which provides the nursing staff immediate advice about what is happening rather than waiting, which is the norm in aged care. It is really about time and expertise, the gaps that we face. Time is not just that nurses in aged care are time poor; we all know that. It is more the turnaround time for a person who is deteriorating. As Dr McVey will say, the identification of that is critical in and of itself. A person is deteriorating and then the nursing staff need to call the GP, who may not be available on that particular day and it may take 24 hours before the GP arrives. The GP may write an order for symptom control of some form of medication. That needs to then go to a pharmacy, which is often off-site. That needs to then come back to the aged-care facility and it is not unrealistic to expect that 48 hours have passed from the initial determination that the person is deteriorating.

The facility has two options: either do our best to be kind and caring to a person, which we all know is not enough, or send the person through to the acute system via the accident and emergency department, and we all know that is not ideal either. So what we have tried to develop is a process and expertise level that circumvent that time issue. We have acquired a drug licence for that unit, which means we are able to hold stock within the residential aged care facility of medications that is not the norm. I have to say it was quite an interesting process getting that drug licence because I do not think there are that many requests of that nature anymore. So there was surprise coming from the pharmaceutical branch of 'Do people still do that, actually get drug licences?' That meant we could have medication on site. Specialist support and a dedicated GP that has been working with the specialists to make sure the GP is actually aligned with the treatment plans.

Senator MOORE: Have you costed that program?

Ms Raguz : We have. At the moment it is being cross-subsidised because we are able to put that in the larger facility, so we have put that into a 124-bed facility and we dedicated nine beds, so there is cross-subsidisation. We do get Commonwealth funding for people, but the additional cost is approximately $50,000 per bed per annum. That is on top of what we would get in Commonwealth funding, which is—sorry; I do not have that costing right in front of me.

Senator MOORE: Could you get that for me on notice?

Ms Raguz : Yes.

Senator MOORE: It is interesting to me, because you have put a special model in your aged-care facility and it would be useful to know exactly how much greater the operational costs would be for the services you provide. You also said that you have more beds available so that family can stay—

Ms Raguz : Yes.

Senator MOORE: which is not common. Even in the best aged-care facilities, where you know the person is very frail, people do not often stay. They come in and out and they hang around but they do not stay. But you actually have that facility.

Ms Raguz : Yes.

Senator MOORE: Thank you. The two professors expressed concern about the lack of dedicated training in end-of-life care palliative services in the medical, nursing and other allied health services. Has that always been so, or is this recent? I do not know whether it has changed. When you three went through medicine—at different times!—what was the amount of specialised training in this sphere at that stage, compared to today?

Prof. MacLeod : Well, there was none.

Senator MOORE: There you go! No, I should not be laughing.

Prof. Cole : There was none in the UK and there was none in Australia.

Prof. MacLeod : As part of my own PhD work, I looked at the delivery of undergraduate medical education across the world. I think at that time, which was about 10 years ago, there were elements within North America where it was good and there were some pockets in England and Scotland where it was relatively good. But, despite the recognition that there is inadequate training, the medical schools have failed to take it on. About 10 or 12 years ago, ANZSPM, the specialist society, wrote a curriculum for medical undergraduate training which was accepted and endorsed by all the deans of the medical schools in Australia and New Zealand, but almost nothing happened. I think that my appointment to the University of Sydney was in part because they recognised that there was a need to increase education for medical undergraduates, and not just in the way that you manage medications, because in some senses that is really easy. What is hard is to develop practitioners who are comfortable about sitting with somebody who is dying; who understand that meeting that person's spiritual needs is just as important as meeting their physical needs; and who understand that, because we are living in a multicultural society, our own individual cultures impact on the way that we deliver care and that the recipients of care have cultural needs that we do not always address.

Palliative care has grown out of a westernised medical model which actually does not suit a lot of indigenous peoples. It does not suit a lot of people from South-East Asia, for example.

Senator MOORE: It does not suit a lot of us.

Prof. MacLeod : No. If you are looking after me and I do not know anything about your culture, you have to understand what my culture means to me in the same way that you have to understand what gives my life meaning, because at the end of life that surely plays a much bigger part than it would today. I think that is part of what we have to try to get into the hearts and minds of the medical students—and that is my remit—so that they can understand the person.

In 1927, the editor of the Journal of the American Medical Association wrote an editorial that was particularly poignant because he was dying. He pointed out, in 1927, that medical education was too focused on the mechanics of disease. He said then that the secret of caring is in knowing the patient. That is what happens in aged-care facilities. It is what should happen in hospitals. It does not take a lot of time, but it takes an understanding of how you have to be in those intimate moments that you get with people who are really sick and their families.

I think that is the important thing that we need to for undergraduates. For postgraduates, it is the same, because the one thing that every doctor can be guaranteed of having to do at some point in his career is look after somebody who is dying. They are not all going to deliver babies, they are not all going to look after children and they are not all going to be—

Senator BOYCE: But even those (indistinct)—

Prof. MacLeod : Exactly right.

Prof. Cole : With respect to my experience at the University of New South Wales, just the process of bringing about curriculum change was very complicated. Immediately after that report was endorsed, about a decade ago, we happened to be going through major curriculum change at the university. We were able to restructure the first three years of the curriculum so it was based around four terms that were called, a bit unimaginatively, society and health, so everyone is in a context; beginnings, growth and development; adult health; and ageing and endings. It was originally called 'regression and endings' and people did not like that, so it became 'ageing and endings'.

The 'ageing and endings' term was basically four weeks about cancer and palliative care and four weeks about ageing and a bit of palliative care. The effort involved to get the four weeks of teaching recognised in each of those terms as an integral and important part of that teaching was huge. We had people who believed in it. It is even more difficult within the area. People are saying, 'There is so much that these people have to learn about medicine, nursing and allied health. Why are you doing all this?' It is not easy, even with a recognised curriculum to operationalise it.

One thing that I think is important is that the Australian Medical Council when they are reaccrediting and re-evaluating and reviewing, in particular, medical school curricula, should be looking at that as a marker of what is being taught and for how much time it is being taught. Because everyone is born and everyone is going to die. The one thing that I initially see in the medical students whom I teach is considerable anxiety in being around dying patients. People want to run away. Doctors want people to get better; that is what we are trained to do from early on. It is much harder to sit with a person when you cannot do much more than sit with them, listen to them, comfort them and support them. You cannot necessarily prescribe things that will fix the problems.

Dr McVey : My experience at Sydney University School of Nursing is similar. They reviewed their curricula at the end of last year and they did add in palliative care components but, in my opinion, it is still quite low and more like a token gesture. They have now started undergraduates again this year, so it will be interesting to see the component there. Hopefully, me working there will help influence a higher profile.

Senator FIERRAVANTI-WELLS: Can I get you to extend your comments in relation to the difficulties. If we had a system similar to what the Productivity Commission is talking about: an entitlement based system—and, for the record, Ms Raguz is nodding her head—it will obviously change in terms of the system and the funding arrangements so that what you have developed at HammondCare could be a model that would, in the end, probably benefit much more from an entitlement based system. But, Professor, would that not also have the other effect that there is nothing like rebates under Medicare, if I can put it that way, to encourage the medical profession to think in terms of potential funding sources and perhaps that might be a way—it might be a back- door way—of achieving at least some thinking that palliative care—end-of-life care—and dealing with older Australians is probably another source of funding. I hate to put it that bluntly, but maybe that is the reality.

Prof. Cole : I think it absolutely is the reality. A student always asks: is it in the examination? And people who are in private practice are always thinking: is this worth my while to do? One thing we address in our submission is the difficulty of funding schedules that make it very difficult for private specialists, unless they are really passionate about the care of a particular patient to actually visit them at home or visit them in a nursing aged-care setting. One of our three clinical training centres is at Hammondville. I believe it is the first on the eastern seaboard that is an academic unit, based primarily in an aged-care village. I have my primary office there.

Senator FIERRAVANTI-WELLS: That is at Greenwich?

Prof. Cole : No. It is at Hammondville.

Senator FIERRAVANTI-WELLS: I have seen what you have done at Greenwich and it is very good as well.

Prof. Cole : At Hammondville we have a professor of positive ageing in care. Nevertheless, that still leads to a situation where you cannot continue positively ageing on a certain trajectory. When we were appointing staff to that position, we asked people, 'Do you want to come and work with us?' Most of them said, 'No, I don't want to work outside a teaching hospital.' Getting students into the space in aged care and in people's homes, where the 98-point-something per cent of most older people and those in need of this care live, and getting them out of teaching hospitals into new care environments is critical in terms of attitude formation. Then it is a question of getting them in their professional training—whether they choose specialist or general practice training—into those environments and then once they are in practice, as you correctly say, providing the fees and the support structure that actually make it worth their while. I had a plumber to my place to unblock a drain and he wanted $400 to walk in the door. I have never charged that for a home visit in my life and I would not be game to. That is the craziness of what is happening.

Senator FIERRAVANTI-WELLS: Just following on from that, the concept of the teaching aged-care facility has been talked about but it has not progressed, certainly not in recent years, despite the discussions about it. But certainly from what you are saying that would be part of the mix.

Prof. Cole : Absolutely. Ours is very new—we have only been there for 12 months and we are still just getting our staff in place.

Senator FIERRAVANTI-WELLS: Might I say that Dr Stephen Judd, your head, has certain good views on food in aged-care facilities which I share. I think that is part of the philosophy.

Prof. Cole : The microwaving of eggs and other things!

Senator FIERRAVANTI-WELLS: Don't start me on it! Ms Raguz, on the concept of the entitlements system, you are aware obviously of what the Productivity Commission has said. Can you take on notice to look at some of the items that you would see as being part of an entitlements schedule, particularly in the palliative care space, drawing on your experience in the model you have. Bearing in mind the 50,000 extra, presumably some of that would be offset by savings in the hospital system in the acute setting.

Ms Raguz : Absolutely.

Senator FIERRAVANTI-WELLS: How much more could you do in your residential aged-care facility settings, bearing in mind the framework that the Productivity Commission has outlined and particularly in view of the experience that you have with the model you have developed?

Ms Raguz : The Productivity Commission has done a good job in understanding and looking at what the issues are that are facing aged care and the reality of how this industry is going to be sustainable over the period of time where we have an explosion of older people. What is lacking is the answer to the workforce question. What Professor Andrew Cole, Peta McVey and Rod have been saying is that we can do a lot in our aged-care services and we can certainly do that at a more efficient price for a long period of time, especially with the entitlements system coming into place, than what the public health system is able to offer.

The challenge is making sure we have got the people with the skills, the knowledge and the experience to do that across a broader base. Without that, it can get stuck. We have seen it with our palliative care suite: if we were not an organisation that had a schedule 3 hospital that provided specialist palliative care services, it would really not be that easy to get those things up and running and off the ground. It is about how we get those experts to come on board and to move beyond that view: 'Oh, it's aged care—that's a bit daggy. I don't want to spend time in aged care.' For young doctors and nurses it is not the sexiest part of the industry to select. So it is about getting it within undergraduate training, looking at training people on the ground in the nursing homes across a broad scale. And it is not just about setting up distinct units, even though that is an ideal. It is about lifting the bar across the whole of aged care, be it in people's homes or in facilities.

Senator FIERRAVANTI-WELLS: Which is where the Productivity Commission thinking is going. In terms of the concept of the workforce, the government's response has been—

Ms Raguz : I could not help but notice when we entered this room there was some discussion around GPs or general practice and the difference between whether or not a geriatrician or a GP is in the picture. Hopefully I am not stepping out of line, but my opinion is that there is an awful lot of work to be done at the GP level in order for that expertise to develop. From first-hand experience of running 750 aged care beds and 1,500 odd beds in our community services, we do struggle to get GPs who have the knowledge and the expertise to be able to deal with people at the end of their life well. It is not just 'we will prescribe a low dose of morphine and hoped that does the trick'. I think we have to name that and say it is a bigger problem than just small palliative care suites. It is a whole-of-system question that needs to be answered. If GPs are the primary care physicians, there needs to be a lot of effort and emphasis put at that level as well.

Senator FIERRAVANTI-WELLS: How much of your workforce is just palliative care?

Ms Raguz : We would be very lucky if any of our registered nurses have palliative care experience or knowledge. We developed a specific training program for all of the staff that were going to work within the palliative care suite, that nine-bed unit. Our idea is that that will have organic impact across the whole site because it is a hub of expertise. We have put a lot of focus on the training through the Program of Experience in the Palliative Approach (PEPA). Peta McVey has developed some training packages and we have delivered those consistently. It is about peer learning. It is training the trainer: I know something, you ask me and when you ask me the third time then you know something. That is how we have looked at that particular site.

We do not have a lot of palliative care trained nurses. In fact, in aged care, your ratio of registered nurses to direct care staff is, in a good nursing home, one registered nurse for probably 25 residents. In some nursing homes you may have one registered nurse looking after 70-odd residents. We need to have good GPs. We need to have good registered nurses. We need to also develop training that addresses that care worker level. Dr McVey has been very involved in pitching it at the right level so that staff understand what a six means on a pain rating scale. How do we get a care worker to know? They are the people in the bathroom, in the bedroom providing people personal care, spending most of the time with residents and clients. If they do not understand where the triggers are, the experts do not get involved.

Senator FIERRAVANTI-WELLS: Have you assessed how the recent ACFI changes are going to impact in that high care area? Blue Care shared with us what they thought an estimate would be on the impact on their funding. Secondly, do you envisage that the requirements for you to comply with the new proposed framework for funding are going to differ from what you are now doing for the cap?

Ms Raguz : To answer the first question, we have done some modelling as far as what the ACFI changes will do. It will be about a three per cent change in our funding based on just the changes in the ACFI. But the real impact is we will not get the Commonwealth funds, the 1.49 per cent. So it will be a real slowing. As an organisation, we have looked at it and said the government is in the position that it is in and it is not going to close our business. We do not think we will be affected to the point that is going to have a negative effect on care. We will make sure that we provide those services but it will have an impact.

Senator FIERRAVANTI-WELLS: The second question was about the workforce compact.

Ms Raguz : We are not really sure what that means yet. I know a task force has just been developed to start looking at that. I do not think we are going to see any real benefit from that for the next two years.

Senator FIERRAVANTI-WELLS: Are you on an EBA at the moment?

Ms Raguz : Yes.

Senator FIERRAVANTI-WELLS: Are your workers all a part of the union?

Ms Raguz : No, not necessarily. Aged care is not a highly unionised workforce—registered nurses perhaps but in general aged care it is not highly unionised. We have certified agreements in place with our care workers and did have before the modern awards started to kick in. I know a colleague of mine is sitting on the committee looking at that workforce compact but we do not know what the impact will be—how that 1.1 billion from here will go over here and what that will mean. I do not know the answer.

Senator BOYCE: We have had already some suggestions—and your submission makes this point—but we have not really nailed down what palliative care is. The Royal College of Physicians has suggested using the WHO definition. Do you think that is acceptable and is it certainly something which should be nationally acceptable?

Prof. MacLoed : I would say so, yes it has been revised a couple of times by the WHO but the latest one from 2002 serves the purpose.

Senator SMITH: The specialist palliative care unit which you have, where did the inspiration for that come from? Had you seen it in an international context or was it from you creative thinking?

Ms Raguz : We have known for a long time that the care of older people, particularly in nursing homes, during the dying phase is not done universally well. A lot of aged care providers will say that they do palliative care really well. That really is based on a lot of good people who care but it is not necessarily technically competent. As I said, being an organisation that had the benefit of schedule 3 hospitals, palliative care hospitals, it was an opportunity to say that the purpose of acquiring those hospitals was to be able to say, 'We want to provide older people with the right care throughout the various stages of their life and we need to make sure we can cross over those areas of expertise. So our aged care services were fabulously expert in dementia care and we had hospitals that were expert in palliative care. So how do we bring the two together?

It was only about creative thinking; it was a good idea. We sought funding, which we did not get ,and we thought, 'We'll do it anyway.' It has been operating since November last year, so we are just starting an independent evaluation. We have commissioned that again—HammondCare is bearing the cost—it in order to demonstrate not just the cost-effectiveness but the better outcome for the people and their families. Anecdotally again, we have had so many families which have just felt better given that that was an option. So the answer to your question is: good idea but it was an opportunistic idea.

Prof. Cole : We have had experience running a unit specialising in dementia care with people with behavioural disturbance and need for care. That unit had developed the link between the hospital unit in the aged care unit. We thought, 'Why don't we try to develop that model in the palliative care space? And it worked.

Senator SMITH: Were you unsuccessful in the funding because there was no funding program that encouraged innovation were there was a program and you are just unsuccessful in it?

Ms Raguz : There are few opportunities to go out there and propose. One of the areas we looked at was for a nurse practitioner role that we thought would link quite well. There was also another program which provided equipment for palliative care. We were looking at lining up the two. I cannot tell you why that funding application was not successful. Sometimes those funding rounds are about who writes the best essay. So we were not successful but it did not alter the outcome.

CHAIR: Could I follow up on that? In your recommendation 4 you talk about examining the feasibility and expanding the suite model. Have you raised that with the government?

Ms Raguz : Which government? The Commonwealth—

CHAIR: Commonwealth and also state.

Ms Raguz : We certainly have raised it with the Commonwealth. I would have to ask Stephen Judd, our chief executive, whether or not he raised at the state level, but we certainly raised it with the Commonwealth, because it is an area that we do not think can be ignored. I think we need to be looking at innovative models, and there are opportunities through flexible funds programs and whatnot to get these things up and running and off the ground. We just started that before that was actually open—the flexible funds round last year.

CHAIR: What was the response?

Ms Raguz : The response is that absolutely there is a need, but like any response the government is saying, 'We think we are putting enough into aged care so there is not really an option for a lot more top-up'. It costs more than aged care but it costs less than subacute care, and so it is that in-between land. In the state health system there is that very real truth that, even if a person is out of that subacute bed or acute bed and in an aged-care bed, another person very quickly fills that, so there is not a real dollar saving. It is just that the cost of care for this person is less than what it would have been there. So it is hard to actually get people to come on board.

CHAIR: Which takes me to the issue we were discussing earlier around data. You made the point that the bed is filled anyway so we are going to be paying out the same amount of money for acute care. Have you done any more data collection around that—figures specifically around whether you can put a dollar figure on—

Ms Raguz : That is what we are doing. In July we have started an independent evaluation. That will run for six months. What we are hoping to have at the end of that six months is an accurate evaluation of the service both with costings and in outcomes. But we do not have that yet.

Prof. Cole : That is in the aged-care space. Certainly we have costed very accurately what we do in the subacute space and compare that again with the acute space, and compare that again with the per diem cost of somebody in an emergency department. And there is frankly no comparison. But, as Angela says, in wintertime, once the palliative care patient goes back to the nursing home there is somebody else in the bed and the poor hospital has still got the same cost no matter who is in that bed. The difficulty is that it always seems to be the other person's job. The state says, 'Talk to the Commonwealth' and the Commonwealth says, 'Talk to the state.' But, within the aged-care space, to the extent that the Commonwealth does have the responsibility of ambulatory care funding for medical services and the support of the aged-care system, yes, that is the space that our CEO spends a lot of time talking with people in Canberra and building doors and so forth. This we thought was something that was too important not to do, even if it is a cost to where we are at at the moment.

CHAIR: Are there any final questions?

Senator BOYCE: Could I just ask: when you have finished that evaluation, I think the committee would love to receive a copy.