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Community Affairs References Committee
Palliative care in Australia

CURROW, Professor David, Professor of Palliative and Supportive Services, Flinders University


CHAIR: Welcome. I understand information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. We have your submission, which we have numbered 123. I invite you to make an opening statement and then we will ask you some questions.

Prof. Currow : Thank you for the opportunity to appear before this committee this afternoon. Palliative care continues to make a very positive impact on the health of people right across the country. Services have grown up over the last 30 years and Australia is now quite genuinely an international leader in the provision of palliative care. The key challenge as we look to the next couple of decades, however, is that, to date, palliative care has been funded as a social good, as something that helps us all to feel better about the support we offer people at a very vulnerable time of life, but I would suggest it has not been funded at a level that genuinely reflects the improvement in health that can be delivered across the community by good palliative care.

Death is rarely a failure within the health system, but the process of dying can be managed incredibly poorly. As we look at resource utilisation today, we can improve the care that we offer within our current budgets. This is not about more money; this is about ensuring that we distribute that money in a way that genuinely engages in ensuring that the health of the whole community is a focus.

We also need to be incredibly clear about the demography of the people who are seen by palliative care services—that is, the people who die expected deaths in our community. One in three of those people are under the age of 65. It is important that we acknowledge the full age spectrum as we start to think about the services that need to be provided. Excluding dementia, for every two people seen with cancer it would be expected that a person with a non-cancer diagnosis would also be seen. We have a national strategy; we need to back that, to resource it and to implement it.

We need to improve the quality of care that is offered to people at the end of life in the same systematic way that we go about improving care in every other part of the health system. Specialist services do not need to see everyone who is dying, but they do need to influence the care of everyone who is dying. And they need to be able to say, hand on heart, to the community that they are seeing the people with the most complex needs and addressing those needs in a way that makes a difference.

In terms of outcomes beyond the patient, we need to focus on the caregiver, and not simply while in the role. There is a huge hangover effect that lasts for years after having provided care for someone at the end of life—and if we are not sure of the magnitude, let me share it: one in three people will have had someone close to them die of an expected illness in the last five years; one in 10 people in our communities will have provided care for someone dying an expected death in the last five years; and one in 30 people across our communities will have provided intensive day-to-day care for someone who died an expected death in the last five years. That has enormous health consequences.

Caregivers do not look after their own health in the same way as they look after the person who is their care recipient. They often forgo routine care that would maintain their health, and there is excess mortality for caregivers in the couple of years after they have relinquished the role. They are real concerns, and we need to invest in a health system that actually provides support for caregivers. The ultimate cost shifting is not between the Commonwealth and the states and territories; the ultimate cost shifting is to caregivers who are unsupported in the community, who bear an enormous financial and personal burden, an enormous health burden, in providing this care. It does not mean they would not do it, but it does mean that we as a community need to reach out and support them.

In terms of language, I just want to draw attention to a distinction between a palliative approach, something we ask of every health professional—and we need to acknowledge this afternoon that there is a generation of health professionals for whom palliative care was in no way part of their training; I think that is a far bigger challenge than the next generation—and those people who need specialist palliative care, a team that comprises allied health practitioners, physiotherapists, occupational therapists, pharmacists, social workers and a range of other allied health practitioners, nursing and medical specialists.

For specialist services, it is very tempting to simply focus on the clinical, but if we do that we do not progress the research evidence base that will improve the models of care and the clinical care we offer, and we will not progress the education that needs to be provided to colleagues who are currently in practice and for whom this was not part of their training.

Ultimately, palliative care can now say that it does make a difference to people who are facing a life-limiting illness, to their carers and to the health system that provides good palliative care. We as a community need to look at our level of investment in that and ensure that it is reflecting the health outcomes that can be achieved, not simply a social good. I am happy to take some questions.

CHAIR: Professor, the school that you are at, in Adelaide, is called Palliative and Supportive Services. Has it always been called that?

Prof. Currow : No. It changed when I took the chair.

CHAIR: What was it called before?

Prof. Currow : It was Palliative Care.

CHAIR: Why the change?

Prof. Currow : The change was quite deliberate. I think any name in this area has a shelf life of about 10 years before people think you are part of the group of people who only look after the imminently dying. I think the other important thing is that the competencies required in supportive care—that is, the care of people irrespective of their prognosis but running in parallel with disease-modifying therapies—are the same as for palliative care. It does allow the provision of earlier contact without knowing that person's prognosis. As I point out in the submission, one of the important things in Australia is that our documentation in this area is independent of diagnosis and prognosis.

As we think about that in practical terms, what difference did it make? We trebled the time from referral to death, within the first 18 months in the role that I had as a service director as well as an academic. A lot of that was because our colleagues in oncology and cardiology and respiratory medicine were then able to refer and say, 'Look, you've got some symptom control problems,' or 'You've got some psychological issues at the moment; you've got some existential issues; why not talk to this team?' Talking to one of the members of my team in that circumstance has no secondary gain or loss, and I think that is incredibly important.

What do I mean by that? If you are having therapy that you hope will improve your life expectancy and you go to your oncologist and you have some increasing pain, a lot of patients are really concerned that, if they share that symptom in detail, they may well be told that their disease is progressing, that further treatment is probably not indicated. They tell me there is no secondary gain or loss. I am there to control their pain, and I can do that. So, yes, it was quite deliberate in making that change. It was to allow for earlier referral, in line with the World Health Organisation definitions, and it certainly has done that. More recently, I have seen data from the veterans administration in the United States which has said that you can change the time from referral to death by changing the models of care in exactly that way.

Senator MOORE: Your submission talked a lot about carers, and the data you gave in your opening statement did as well. Has that model changed? Certainly my own experience, from the background that I have, is that people did care for people who were going through illness at home. Very rarely did people get sent to hospital. Parents in particular were nursed by the youngest daughter. That was just the accepted model of care. With the data that you provide, has there been any benchmarking of that against what would have happened 50 years ago?

Prof. Currow : No, not to my knowledge. I think people in general still want to provide care at home, but there are caveats on that. One of the caveats is that between seven and nine per cent of people cannot identify a primary care giver—not theoretically but as they face a life-limiting illness. Secondly, many people say, 'I'm really happy to look after you at home while ever I can,' or, 'I'm happy to look after you at home, but if you become unconscious that's just not going to be a time that I can continue that care.' The third caveat is the practical issues of home based care. I do not think we want to romanticise the enormous challenge of that. For a spouse to look after their partner and have to come home to that same double bed that night as the only place in the house to sleep when someone has died there earlier in the day is not to be underestimated. The number of hats that any person can wear at any one time is finite. To be nurse, cook, cleaner, bottle washer and everything else and then try to be friend, confidant and lover is just not possible for many people. In fact, the transition to inpatient care at times allows for conversations that just have been blocked out by the busyness of 24-hour care, seven days a week.

So there are challenges in that. Yes, we are seeing challenges within the community and the projections for the next half-century are that we will see many more people living alone in our communities with the challenge of what that means in terms of someone who will take up the role of primary care giver. Certainly, data from around the world are very consistent. As Professor Phillips has pointed out, having someone who identifies themselves as a primary care giver is the most important predictor of home based care. Without that, we are not going to see those rates change substantially.

Senator MOORE: In your submission you mention two particular programs. One is the Palliative Care Clinical Studies Collaborative and the other is the Palliative Care Outcomes Collaborative. Both of those depend on people being involved. We heard today evidence from a large Queensland based organisation. In their opinion, the Palliative Care Outcomes Collaborative has been jeopardised to an extent by large organisations who are involved not being prepared to do the data collection that is required. It will be in the Hansard transcript. They said that one of the largest providers in Queensland is not involved in this program simply because it is too onerous with the data collection basis. Also, I had not heard of the Palliative Care Clinical Studies Collaborative, and it goes on to talk about the passion that we all share in this committee for clinical trials but clinical trials within the palliative care framework. Your opinion on those two matters would be appreciated.

Prof. Currow : Let me declare an interest: I am an investigator on both programs; I just need to put that on the record. In terms of the Palliative Care Outcomes Collaborative, we are asking for a data naive clinical community to very rapidly collect data at point of care and start to compare with each other in a benchmarking process. That is a difficult issue for any community. If we look across clinical care, we can look to emergency medicine, intensive care, some of the surgical subspecialties, neonatal care and, to a lesser extent, maternal and child health as the only other areas that are really taking on data collection at this sort of level of granularity.

It is not particularly onerous and we have seen small, relatively poorly resourced teams not only come on board; most importantly, their key success factor has been embedding this into their day-to-day clinical work. This is not esoterica out here; it is actually practical stuff. It is stuff that we say to the community we do well—things like, 'What is the pain control like for this person today?'

We have complemented the direct point-of-care data collection with periodic snapshot collections from patients and their carers. There is an 18-month cycle here. We provide reports back every six months so, when a new service comes on board, the first six months they say, 'I don't know where you got that data but it is not ours.' Then in the next six months we have, 'Perhaps there is a problem here and we're not as good as we thought we were,' and in the next six months they say, 'We can see that there are areas where we need to work.' Within a very short space of time, 2006 to 2012, to have this up and running, where we estimate that 80 per cent of all people referred to specialist palliative care services are covered, is a tremendous engagement of the sector.

We have seen lots of services who can now say, 'We've collected the data for the first time systematically. We've seen a problem. We've put a program in place to address that problem and we've seen our outcomes improve.' There were lots of people who said, 'You can't measure outcomes in palliative care.' Clearly we can and they are patient centred outcomes: 'What is your symptom control like? What are we doing to better maintain your level of function in the face of inexorable decline?' And, yes, there are a couple of very notable services across the country that are not participating, but they are the exceptions now.

Senator MOORE: Why are they not? What do they tell you? You just marketed it to us as to why it is good, and it sounds good. Why would a service that is dedicated to providing palliative care—that is their reason for being; they get funded to do it—say, 'No, we're not going to participate'?

Prof. Currow : I think there are a number of reasons. Firstly, for example, there is one large service in another state—not Queensland—where it would require double data entry for the local data system that they have in place. That will be addressed by the end of this year. It has taken us 3½ years of negotiation with that state department of health to get that in place. We have offered resource on the way. It is not as though we have asked for a charity in that process. That has been one thing. There has been a fundamental, philosophical challenge for some people in saying, 'We're not sure that we can actually collect data on outcomes.' I think there has also been a reticence at times, if we are brutally honest: comparing to other services may be far less comfortable than people would want to admit. We have seen groups within the collaborative who have really been challenged by some of their results. This is not a comfortable place for every service to be. If we look at a median, half the services are going to be below the medium. So the investment has been to work alongside services to look at how the quality of that care can be improved, and that is what we are starting to see now.

I, like you, I am mystified. If people say, 'This is what we are here to do and this is core business,' the opportunity to measure that, to benchmark it and to improve the quality of care seems obvious.

Senator MOORE: Has there been any attempt to link this data to funding? Would you be afraid that, if you gave data and it did not look good, you might not get funding?

Prof. Currow : It is a voluntary program at the moment and it has been deliberately voluntary for a couple of reasons. You have absolutely identified the major one. There is another large service provider that is participating in yet another state, and they were already collecting much of this data and their funding was contingent on it. They have had to look at how they collect their data so that they are actually reflecting patient centred responses. It has been a big change for them. So, yes, there are challenges in that space. Did you want to hear about the palliative care clinical service providers?

Senator MOORE: I would really like to hear about it.

Prof. Currow : As you are aware, there has been a National Palliative Care Strategy for more than a decade. One of the key platforms identified very early on was the community availability of medications. I think the Palliative Care Clinical Studies Collaborative is the most exciting example I have ever seen of whole of government actually addressing issues. Meetings were brokered. The Cancer Strategies Group, appointed in the late 90s, put this on the agenda. It was then taken forward by a committee that had representation from the Pharmaceutical Benefits Branch; Pharmaceutical Benefits Advisory Committee; Therapeutic Goods Administration; Clinical Oncological Society of Australia; Palliative Care Australia; Cancer Australia, as it came into being; cancer consumer organisations, which were not Cancer Voices in those days; and various professional organisations as well. They identified that there is no mechanism for government in Australia to actually place something on the Pharmaceutical Benefits Scheme; it needs a sponsor—that is the legislation. Because of that, were the World Health Organisation, for example, to say, 'Here is an essential medication,' we would rely on a sponsor, which 999 times out of 1,000 is from the industry.

From a national survey in 2000, a number of medications were identified as critical to community based palliative care for which there was not an evidence base and there was not a sponsor because these were off-patent medications. So there was no incentive for the generic companies or for the proprietary companies to invest in taking that forward. The working group was formed. It importantly identified a number of medications where the indication, formulation and route of administration were acceptable—that is, the TGA had registration for all three, and all three have to line up—but there was no subsidy. That was dealt with and in February 2004 a new section of the Pharmaceutical Benefits Scheme was initiated. It was the first patient defined section of the Pharmaceutical Benefits Scheme and it is in palliative care, and has since been replicated in Aboriginal health and in paediatrics.

That same working group identified a number of medications for which there was not evidence but which were in widespread use. The Commonwealth then put out a tender for an organisation to lead national, collaborative, multisite research for clinical trials at a level of quality that would inform both registration with the Therapeutic Goods Administration and importantly subsequent subsidy, were they to be positive studies with the Pharmaceutical Benefits Advisory Committee.

I want to go on record as saying that, as those studies were developed, the TGA and the PBAC offered to every company, every new triallist, the opportunity to talk about the design. We have done that ahead of these ever going to ethics committees and their input has been absolutely invaluable in refining that process. At the moment, there are 12 sites across Australia who are participating in these studies. They cannot be done in other populations. We cannot take information from a population of people who are relatively well and extrapolate it into this populations who are frail, on many medications and need to have evidence developed for them. Two of those studies have already been completed and are being reported at the moment. Importantly, some of these findings will be able to be extrapolated to other areas of health care.

I think I drew attention in the submission to delirium—something which costs the health systems of the world billions of dollars a year and yet we do not have good evidence on the benefit of antipsychotic medications, which are prescribed thousands of times each day for people who are acutely confused. We do not have any evidence that their benefit over and above good nursing care is there and, in fact, for some people they may be detrimental. We need to answer those questions and that may have important consequences for other parts of health care, particularly aged care, the acutely unwell as people come in from trauma or people in the post-operative setting. This is high-quality, internationally leading work. It is the largest such collaborative work in the world. It is delivering studies that people said could never be done and it is directly informing the quality of care that we offer to people at the end of life in a way which will translate into improved care.

Senator MOORE: Can we get on notice the funding and the time frame for that, because it has been going since the late nineties?

Prof. Currow : For the Palliative Care Clinical Studies Collaborative, the first direct funding was in fact for the work in 2002-03 to prepare for the new section of the Pharmaceutical Benefits Scheme, and the clinical trials component of that essentially started in late 2005. That would be my best memory.

Senator MOORE: And funded into the future?

Prof. Currow : Our funding goes through till mid-2014 at the moment, but I would like to suggest that there has been a fantastic return on investment here, not only in the direct benefits that will be accrued from these studies. We were delighted last year, for example, to have three sites where the Australian Council on Healthcare Standards—and these were not sites that were just palliative care; they were across the range of clinical care—singled out the palliative care units for the quality of the work that they were doing as the most highly commended on site, and that was because of the Palliative Care Clinical Studies Collaborative. So there are direct collateral benefits that patients, their families and staff will experience because of that investment by the Commonwealth.

Senator MOORE: Thank you.

Senator FIERRAVANTI-WELLS: Senator Moore asked you about the change of name. Does that indicate to us that we have a long way to go in educating the community about issues about dying? There is the slow approach or there is perhaps a more direct approach. Do we really need to see a fairly confronting campaign out there? I am asking your thoughts about it. I am not suggesting it; I am just simply asking you, about the softly, softly approach: do we need to see something a bit more drastic to really get people focused on this issue?

Prof. Currow : We as a community need to have a conversation, Senator; I could not agree more strongly. We need to embed it into something that each of us does every year. I do not mind whether it is the Boxing Day lunch or our post-Easter get-together, but families need to have these conversations. We have seen a very positive response to organ transplantation in terms of having a conversation that people said was going to be difficult to have.

By contrast, I draw your attention to an article which I do not have with me but which appeared in the New England Journal of Medicine some years ago. People get paid to do all sorts of research, don't they? They had sat down and watched all of the medical shows of an evening on American television and they had looked at the outcomes, and the outcomes were fantastically good. People were brought back from the brink time and time again, and almost no-one died. Certainly no-one died in proportion to the health systems in which we live and work.

So we have a very limited view of death and dying, and that is compounded greatly by the increase in life expectancy of the last generation, unprecedented in human history. I have looked after people in my working life who are attending their first funeral of someone close to them that they love, and they are in their fifth or sixth decade. Their grandparents died when they were very young; their parents are still alive and well; their siblings are alive and well; and here they are burying their spouse—and it is the first funeral they have been to of someone that they really love. That for us is a huge challenge. We have lost many of the traditions—and those traditions came about for lots of good reasons—around death and dying. We have lost the language. We have lost the ability, often, to reach out.

One of the projects that I referred to in my submission was someone we called a community facilitator. They were there just to make sure that the lamb casseroles came on Monday, Tuesday and Wednesday rather than five lamb casseroles on Friday and to make sure that the kids were taken to sport and that someone was going to pick them up after day care—all of the practical things that we say we want to do for people, but people find it hard to ask. People are not sure how to reach out to someone who is dying or is supporting someone who is dying.

So I think there is a role for a community conversation that we have not had, and it needs to be through many different approaches. We have seen some very high profile people die in the last couple of years. Money does not buy you immortality. Look at Steve Jobs and people like that. We need to take that as an opportunity as a community to actually talk about what is important. People facing life-limiting illnesses are really clear about what is important. It is about relationships. It is about ensuring that we have said the things we need to to make those relationships right. Who of us would not have a phone call or two to make if we knew we were not going to see the end of the football season? We have all had relationships that need mending or that could be a little stronger than they are. And it is about legacy issues. All that specialist palliative care is there to do is to make sure that we are supporting people so that they can do those things.

Senator FIERRAVANTI-WELLS: Professor, there are a couple of things that I would like to focus on. You mention needs based care. You mention that in the context of definition. I take it that that would then need to be extended towards being needs based and providing items on an entitlement basis? I do not know if you heard some of the conversation before in relation to the Productivity Commission one recently announced and the government's response. Do you have a view in relation to an entitlement based system, in particular to include palliative care services in the entitlement system, and then of course going on to MBS items to provide those services?

Prof. Currow : The issue is that palliative care permeates the entire health and social system. The question is: how do we best ensure that people, wherever they have contact with services, are going to be able to get timely, well-planned, proactively considered services? As we think about entitlements, we are talking about the ability to actually say, 'This person now has a life-limiting illness.' At a community level, that will be a huge shift. I think the United Kingdom, particularly England, have made that shift in the last few years, and they have started to create primary-care registers, which have a whole lot of flow-on effects in terms of the entitlements for that person and their carers.

As I pointed out, the one thorn in the side in Commonwealth paperwork at the moment is the carers allowance, which asks a professional to actually prognosticate—and we are either very good at that or very bad, depending on which literature you read—and then hand it back to that family to take to Centrelink. We have to change it.

Senator FIERRAVANTI-WELLS: Absolutely, Professor. I have just gone through that experience in my own family situation—precisely that.

Prof. Currow : We need to change that. If there is one really practical thing we can do today, it is to change that Centrelink paperwork, because it is abhorrent.

By way of how we best provide services, we need to ensure that there is continuity and that there are no perverse incentives, as we think about an entitlement system. We need to think through that very carefully. There are times that hospital—not a hospice, not an aged-care facility—is actually the best place to provide care. And we need to make sure that we do not go down the path of the American system, where their entitlement system has in fact limited hospice and palliative care services and led to some very perverse incentives in how those services then work.

You may remember that in the early 1980s Congress passed a bill allowing for US$100 a day for people who were on their hospice program, which is their community palliative care program. It is not the inpatient program. That was a huge step forward in the United States. But US$100 a day was for all health care. That does not go very far, and it was six-month limited, so people would say, 'Look, you're probably not sick enough yet.' It led to the fact that, on average, the time from referral to death under that program was between 22 and 26 days only. That means that those people, a whole generation of people, have not had the benefit of early referral.

Going back to the World Health Organisation definition, it is really clear: it is the prevention and relief of suffering; it is not just the relief, a reactive process. It is the prevention, a proactive process.

Senator FIERRAVANTI-WELLS: In terms of those services, what suite of people do you see as being the assessors—I do not want say 'gatekeepers'—of that need? Assuming you have a definition, who do you then give that responsibility to? Currently in the aged-care system there is an ACAT team. What do you see in terms of palliative care?

Prof. Currow : I think it depends on the level of complexity and need for that person. If we look to the national documents that Palliative Care Australia put out earlier, in the last decade, we see there was a very clear recognition that there is a small group of people with complex needs from the time that they are diagnosed with a life-threatening illness through until death and, in fact, long after death for their families and carers. There is a group of people who probably have episodic needs and there is a group of people who already get fantastic care from their general practitioner, from their community nurse or from their community physiotherapist. We need to make sure that the process does not take it away from a limited workforce to do a whole lot of assessments for that last group who are already getting excellent care. We need to make sure that if there is going to be an assessment process it is going to be simple, transparent and reproducible and does not detract from the process of actually providing that care.

Senator FIERRAVANTI-WELLS: I actually have more questions but time precludes them.

CHAIR: You may want to put them on notice. Professor, would be happy to take some questions on notice?

Prof. Currow : Sure.

Senator BOYCE: I do not have too many questions, Professor Currow. You were talking before about some levels of care from the time of diagnosis to death et cetera. I was wondering if you could relate that also to views on advanced care plans and advanced health directives and the tension between the two and what we should do to ensure that as far as practical or possible a patient's wishes are communicated right through the system.

Prof. Currow : I think there is a number of wonderful opportunities to get this right and some barriers to overcome, but the barriers are relatively small compared to the opportunities that will be delivered as a result.

Senator BOYCE: I am thinking of the collaboration or whatever, so the types of frameworks that perhaps this could be brought into.

Prof. Currow : I think that the Commonwealth has invested in Respecting Patient Choices as a national program. The thing that I would draw to the committee's attention from that is the values conversation, so what are the values that underpin this advanced care directive and hence the advanced care planning? I have been faced clinically with people coming in with incredibly long and complex advanced care directives and I could challenge them in about 30 seconds, unfortunately, with a scenario that either does not cover it or has an unexpected consequence for what they have put down there in very specific terms.

Senator MOORE: Professor, could you give us an example of that?

Prof. Currow : It is very easy to give an example.

Senator MOORE: It would be just to make that clear.

Prof. Currow : Yes. I was asked by a urologist colleague to see a patient of his who was very keen to do the right thing and have an advanced care directive so that the family was in no doubt as to what was happening. He had early-stage metastatic prostate cancer, so his life expectancy was measured in years at that time. He was in good health. He had a level of function equal to any of us in this room. So he put together an advanced care directive which said, 'If at any time I am unconscious I want nothing done, including intravenous fluids, intravenous antibiotics or blood transfusion.' It was very clear. It was quite explicit. I said, 'So this afternoon you go out of here and you are knocked over by a bus.' He said, 'Oh, that's not what I intended. This is only if I am unwell.' 'Okay, so how unwell would you need to be?' Then you have got a huge issue which is well documented and is well outside palliative care in lots of other areas of health care where people shift the goalposts even then: 'If ever I become paraplegic I will shoot myself.' The person becomes paraplegic and, in fact, a year later they rate their quality of life as better than it has ever been. So that is why Respecting Patient Choices is so powerful, because it has been about the values: what are the values that underpin the sorts of decisions so that we can reflect those if we are called on to do so? That is rather than a long list of highly codified directives. You may want antibiotics to relieve the symptoms of a urinary tract infection without it in any way affecting your prognosis. That can make you comfortable almost instantly in a way that almost no other therapy can. So to say, 'I never want antibiotics again,' may not actually reflect that person's genuine underlying values. Let us look at values. Let us have that broader community conversation. Let us make sure that we tell the people around us who are likely to be asked 'What would David want in this circumstance?' what our values are so that they can articulate those values that would be the foundation of the decisions that I would make were I able to do so.

Senator BOYCE: Nevertheless, this is not the way that we currently go about it in the vast majority of cases, is it?

Prof. Currow : We can improve tremendously.

Senator BOYCE: What about national inconsistency? What is the affect of that?

Prof. Currow : We are asking people to redo whole documents as they shift between states, because we say that they do not carry through. We have hospitals that say that they cannot take a decision made in one admission and assume that it would be the same in this admission. If that is underpinned by an independent advanced care directive that was not made during that admission, I worry that we are unreasonably burdening people in the community—and patients particularly—with those process. We need a simple and nationally consistent process that allows people to make these decisions and talk about to their families and loved ones.

Senator BOYCE: You spoke earlier about the time from diagnosis to death being extended. I hope that at the same time you were measuring the quality of the extension, so to speak. Is that correct?

Prof. Currow : Absolutely. This is not about quantity in any way, shape or form. One of the challenges for palliative care, and in particular for palliative medicine—and I make that distinction, given all of the conversation this afternoon—is that, with targeted therapies for cancer and with some of the new supportive therapies for heart failure, we are seeing people live much longer than expected with good quality of life but with a much sharper decline. One of the differences that we see between people who are dying of cancer and people who are dying of other life-limiting illness is that the precipitous decline in cancer is one of the factors that sees fairly late referral and has people reaching out for resources quickly. Things may have been on a plateau; things may have been going pretty well. Once that change starts, a person often experiences a very rapid decline. That has implications as we think about quality of life. Quality of life is being maintained better for a lot of people, but the decline that does occur happens more quickly and that requires some different thinking about parallel care in those months leading up to the decline and also about the resources that we make available once that decline starts.

Senator BOYCE: We heard evidence earlier today that about a third of people with life-limiting illnesses receive specialist palliative care. The point was made that not all of the rest of the other two-thirds need care but that there is certainly a level of unmet need around care, whether that be for quite short periods, as has been the habit, or for a more extended period. Do you have any comments at all about what you perceive that level of unmet need to be or any useful statistics? That might have been measured in pockets.

Prof. Currow : We have measured it in South Australia. Our group has had a special interest in the people who are not referred to palliative care. We can safely say that we are the only group in Australia and one of the handful of groups in the world who are deliberately going out and finding people who have not been referred to palliative care and finding out what happens to them. Our figures would differ somewhat from those numbers. Our figures show that close to 60 per cent of people with a life-limiting illness will have contact with a specialist palliative care service at some time. Importantly, we wanted to look at accuracy. What we asked was whether they perceived that they needed a palliative care service and, if so, did they get it. We also asked whether they perceived that they did not need a palliative care service and did not get it. If you looked at the accuracy, our accuracy across the community—with the exception of people who do not have cancer as their life-limiting illness—is sitting in the high 80 per cents; 87 or 88 per cent.

Senator BOYCE: Of people with cancer.

Prof. Currow : Of people across the board with palliative care needs. People from culturally and linguistic diverse backgrounds are not different to the rest of the community when you ask about accuracy in that way. There is not an age difference if you ask it in that way. The one difference is that only 69 per cent of people with life-limiting illnesses other than cancer would say that they got the services that they needed. With cancer, it would be in the high 80s, as it was with all of the other numbers. We have gone out and sought to quantify unmet need. We have asked caregivers what the specific parts of unmet need are.

We have categorised that by level of care giving—the level of care giving of someone who provides it on a day-to-day basis versus someone who provides that care as they go to and from work and at weekends looking after Great Aunt Maude versus those who provide some less intense care. Importantly, the unmet needs change in each of those groups. The intense day-to-day hands on care is very much about physical care, managing medications and practical issues. Those who providing care to a generation above them but who are continuing to work are much more interested in information. They do not get to the same appointments with health professionals. They are not in the picture enough. They have informational needs more than physical needs.

Senator BOYCE: Around illnesses or services?

Prof. Currow : About the disease and about services—absolutely. We asked about those things separately. It is really important that as we tease this out we are clear about whose needs we are meeting and how we can better meet those needs.

Senator SMITH: I have no questions, but I thought that your comment at the beginning about romanticising palliative care at home was very powerful.

Senator BOYCE: I do not imagine that anyone who has ever done it has romanticised it, though.

Prof. Currow : No. But when we poll people in Macquarie street everyone says that they want to die at home. What is the reality of that? We have looked at it longitudinally. We have watched people's decisions change. It is for the practical stuff. It is not that services are not available—

Senator BOYCE: Bed pans.

CHAIR: If you ask people their opinion about caring for someone dying at home, do you get different responses?

Prof. Currow : We ask them quite separately. We ask the person with the life-limiting illness. At a separate time, out of earshot, we ask the carer. The answers do not always line up. It is not as though the patient is always going to say, 'Yes, I wanted to stay at home,' and the carer is always going to say, 'Yes, I want to look after this person at home.' It is far more complex than that. As we think about policy, there is a tendency at the moment to say that home death is a good death while institutional death is a bad death. That changes so easily into the idea of us having to put funding models in place to enable that. That is a huge cost shift.

Senator BOYCE: It is still surely cheaper to have a government funded and supported home death than to have an institutional death. It is not a freebie death at home with the poor harassed carer versus an expensive hospital death. They are not the only options, really, are they?

Prof. Currow : We need to look at the spectrum. If we are talking about reducing the number of people who have an intensive care admission as either their last admission to hospital or in their last six or 12 months of life where that is likely to be clinically futile—not socially futile, but clinically futile—then we could free up enormous resources. But if we either take a notional value for the carer's cost and look at work forgone or attribute a value to it, we need to be really careful in looking at the economic model. We need to ensure that there is genuine support for that role. I think there are some jurisdictions around the world that have thought very imaginatively about how to do exactly that.

CHAIR: Thank you. Senator Fierravanti-Wells has some questions on notice. We will forward those to you when we get them.

Prof. Currow : I look forward to them.

CHAIR: Thank you very much for your time and your submission.

Committee adjourned at 17:10