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Community Affairs References Committee
Palliative care in Australia

PHILLIPS, Professor Jane, Professor of Palliative Nursing, University of Notre Dame and St Vincent's Sacred Heart, Sydney

CHAIR: I understand that you have been given information on parliamentary privilege and the protection of witnesses and evidence. Do you have any comments to make on the capacity in which you appear?

Prof. Phillips : I am here representing the submission compiled by COSA, the Clinical Oncology Society of Australia, in partnership with Cancer Voices, a consumer agency.

CHAIR: We have your submission. It is No. 101. I invite you to make an opening statement and then we will ask you some questions.

Prof. Phillips : Our colleagues from Cancer Voices send their apologies as they are unable to attend. John Stubbs, the CEO, may come at the last moment. On behalf of COSA and Cancer Voices, we thank you for the opportunity to respond to this submission. Though the focus of our submission was on cancer, we do recognise the need for palliative care to be more available to all people with a life-limiting illness and that the delivery of palliative care is not just the responsibility of specialist palliative care providers but that of all health professionals involved in caring for Australians who die regardless of the care setting. In response to our submission, we believe that to be able to achieve this we need to continue to build strong, responsible specialist palliative care services that are able to partner with our other healthcare colleagues to support the delivery of best evidence based palliative care—that is, care that is based on the patient's needs regardless of care setting.

We also need to be able to build the palliative care capabilities of the current and emerging healthcare workforce, to meet the continuing demand for end-of-life care.

We acknowledge the Commonwealth's commitment to palliative care and that this is an opportunity to strengthen the delivery of palliative care across Australia by focusing on improving outcomes for our patients and their care givers and probably by focusing on four essential pillars: research, education, commitment to clinical practice and maintaining a positive public policy. We also acknowledge that the Commonwealth is not the provider of direct service delivery but is in an ideal situation to utilise the levers of government, to drive reform, to build capacity and to improve care outcomes.

Having looked at a number of the submissions, I think one of our points of difference is that we have suggested we need to enhance the delivery of palliative care, strategically, at the Commonwealth level, either through a lead agency or through an enhanced palliative care division. That is really looking at the ways in which the Commonwealth needs to be able to work across operational boundaries, to focus on improving palliative care. If we look at the many reform documents that have been published, palliative care gets a mention in many of them, but it actually requires reform in primary care, aged care, acute care services and community based programs. I am happy to take questions.

Senator MOORE: You have probably read the Catholic Health Australia submission. They gave evidence this morning. I am following up on their key recommendation. They thought there should be the development of a national standard for palliative care through the standards process that is now happening across health in our country and they said that it should be linked to accreditation. If you have a national standard for palliative care that includes access to treatment, training and those things—then hospitals, residential homes and state governments would not be able to get accreditation without meeting that standard. Is that something that your combined organisations have looked at or is it something out of left field?

Prof. Phillips : No, not all. I cannot recall what page numbers but we definitely talk about standards. I am here representing an organisation but in fact a number of people were involved in developing the proposal. There was a strong feeling that standards are really important to reduce variations in practice and to get some consistency. As you know, the Commonwealth has invested quite significantly in palliative care services across Australia but we have varying levels of depth and breadth of those services.

Senator MOORE: And access.

Prof. Phillips : And access. And you cannot assume that what happens in one area will happen in another area. In many respects what we have in palliative care is a postcode lottery. Having said that, I do not necessarily believe that everybody needs to have access to specialist palliative care, but specialist palliative care needs to be available to support our other healthcare colleagues who are delivering it. Standards are definitely one way of starting to get some consistency in practice and the way in which services are organised.

If we look at the data, which I am sure you have, the vast majority of deaths in Australia happen in our acute care setting. Fifty-six per cent of Australian deaths happen in acute care—that is, in our hospital—and yet they are not required to deliver palliative care in accordance with standards. The same could be said for aged care which, in many respects, is a de facto hospice. By the time we end up going to residential aged care the vast majority of people's care needs exceed community services and the length of time that they will be in care is really reduced. Twenty to 25 per cent of people will die within six months of admission to aged care.

It is a very small number of people who will end up at specialist palliative care units or inpatient facilities—for instance, Sacred Heart. When we look at the data of patients who end up in that facility it shows they are predominantly people who live within a 10- or 15-kilometre radius. That provides a service to a fairly tight population base. In summary, yes. COSA is supportive of the implementation of national standards.

Senator MOORE: We heard evidence this morning from someone who was reinforcing the difficulty of navigating the system if you are a patient or family of a patient. They talked about the extraordinary difficulty of finding out what is available, where and how, and it adds to the trauma of the situation. I know that is something that Cancer Voices talks about all the time, and they act as a voice for people who are trying to find their way through the system. Are you aware of any changes or any developments within that process of coordination of services, or at least support for people who are trying to find their way through the services, that has come from the extensive work of organisations like Cancer Voices over many years?

Prof. Phillips : One item that we have is a national palliative care directory, which is housed on Palliative Care Australia's website. The degree to which that is up to date and reflects service delivery is probably questionable and probably quite difficult to maintain on its current platform. I think the people who probably have the most difficulty finding their way to palliative care services are people with non-malignant diseases. The pathway for most people with cancer is probably reasonably well set out but many people, even with cancer, would find difficulty getting a referral, potentially, to palliative care. I think it is much harder for people with end-stage heart failure, perhaps for many people with chronic obstructive pulmonary disease and some who have neurological conditions and disabilities. I think there is still an enormous amount of work to be done there.

The other issue, as I have said before, is the way in which palliative care partners with people with other illnesses. It may not necessarily be about palliative care taking over the care but rather working with the health specialists that those patients have known for a long period of time. Many of those patients would actually be quite dependent on their healthcare provider referring somebody on.

Senator MOORE: I have lied to the chair. I want to fit one more question in. Your submission talks about workforce and training. It concentrates on doctors, which worries me; but nonetheless I would really like to give you a chance, because of your position in the nursing profession, to talk about the issue for nurses in palliative care—the training available and the cost of training. If someone does make the choice that this is an area they would like to work in, what are the costs and limitations to their making that choice and getting that experience?

Prof. Phillips : First of all, it was not COSA's intention, and being a nurse—

Senator MOORE: No, I know—

Prof. Phillips : I am sorry that slipped by me, so it was good editing—on your part, not ours. Nurses really will be the main carer for the majority of people who are dying, regardless of care setting. A couple of things have happened that make it really important that the Commonwealth maintains its commitment to education—I will speak initially about the emerging workforce—and that is the development of the palliative care 'PCC for you' curricula. I am delighted to say that at the university I am associated with, which has a relatively new curriculum—so it is much easier to manage—all of that content and palliative care is actually embedded across the three-year nursing degree. There are also opportunities for medical schools and allied health schools to utilise that content, which is invaluable. I think is a great example of some of the work that is being done to expose emerging clinicians to palliative care.

In terms of clinicians who already have graduated, there is the PEPA program—the palliative approach experience. I think that is an invaluable educational opportunity for people to have. But if we were talking about higher degrees, which I think you might be alluding to, or to coursework, then in fact for nurses to undertake postgraduate qualifications—either a postgraduate diploma or a master's level—coursework is actually very expensive and I think it is particularly prohibitive for many nurses. However, if I could convert them to considering undertaking research into palliative care work, there is a different funding mechanism and they would be much more supported by the Australian tertiary sector, as opposed to those undertaking coursework.

Senator MOORE: And that is an option?

Prof. Phillips : Yes, but it depends on their prior training and whether that is the pathway that they would like to undertake.

Senator FIERRAVANTI-WELLS: I would like to take you to the aged-care component of your submission in particular. You only just arrived, so you would not have heard some of the questions that I asked earlier. Are you familiar with the recommendations that were made by the Productivity Commission in relation to the Living Longer, Living Better package?

Prof. Phillips : Yes, I have some understanding of that.

Senator FIERRAVANTI-WELLS: A key underpinning of those recommendations was a move to an entitlement system in terms of delivering aged care services. I wonder if you have some views in relation to those recommendations and what they would mean from a palliative care perspective. Have you given any thought to how they could practically translate?

Prof. Phillips : I must say, in terms of the sequencing of these documents, our submission was submitted prior to that policy being delivered.

Senator FIERRAVANTI-WELLS: Do you have any thoughts?

Prof. Phillips : They would only be personal thoughts and they may not necessarily reflect the views of my colleagues at COSA.

Senator FIERRAVANTI-WELLS: We are happy to take a professor's personal thoughts.

Prof. Phillips : I do not believe that the changes to the funding ought to influence palliative care, because I believe that we should all be able to get excellent, evidence based end-of-life care regardless of the bed we find ourselves dying in.

Senator FIERRAVANTI-WELLS: In other words, you support the concept of entitlement. So the service provider potentially has a situation where there is a schedule of items that are particularly pertinent for aged-care services, which would include items specific to palliative care, so that that care can be delivered irrespective of where that setting is, whether it is an aged-care facility, in the community or wherever.

Prof. Phillips : Thank you for clarifying that point. I thought you were referring perhaps to the financial contribution of people entering aged care. I am not an expert in aged-care funding, but in terms of the funding items for palliative care, I think there does need to be some reform. It is extremely difficult for residential aged-care providers to provide the level of care that we would expect our parents or grandparents to be receiving in residential aged care. The other thing is that the majority of people in residential aged care have really very complex care needs. I am not entirely sure that the current items reflect the level of need.

Senator FIERRAVANTI-WELLS: I will take you back to the submission, home and community care and some of the comments that have been made in relation to that. You make the point that there is a need for more equitable and rapid access to palliative care and also for greater support for community services to complement that specialist care. So you have in mind a situation where somebody is in the home setting and currently they are probably relying on HACC services to complement that. Perhaps an entitlement system that looks at those sorts of services would be helpful.

Prof. Phillips : Reviewing the way in which HACC is made available to people with palliative care needs is a really important priority. There is great variability, as you have no doubt heard as you have travelled around Australia, in the way in which people can access HACC services. Sometimes for palliative care patients they are not necessarily available, and that may be because an area has exceeded its available funding and there is a waiting list. The thing is that for palliative care there cannot be a waiting list. When we think about HACC services, they are not only for the patient; equally importantly, they are quite often there to support carers to be able to manage. I think one of the things that is not necessarily clearly articulated in a lot of palliative care policy is that people can only stay at home with an invisible network of people supporting them to remain there. That is unpaid carers, augmented with paid carers.

Senator FIERRAVANTI-WELLS: We have had a discussion today about a greater role for the nursing fraternity, particularly in terms of more services in the community palliative care space. What are your thoughts about that? Is extending MBS items that nurse practitioners, perhaps not on their own but as part of a GP surgery or a network, can claim for vital to continuation of community palliative care?

Prof. Phillips : It is probably not vital in terms of continuation but in terms of strengthening community palliative care delivery it would be an important adjunct to—

Senator FIERRAVANTI-WELLS: How would you see it better extended?

Prof. Phillips : I think that nurse practitioners are an exciting and evolving role, but it is a role in which we really want to make sure that nurses are working in partnership with other members of the interdisciplinary team. It is not necessarily about being an independent practitioner. There is great scope to be thinking about nurse practitioners integrated into Medicare Locals. I also think it is really important to make sure that we do not make regional differences with nurse practitioners being in only rural communities and not necessarily in metropolitan communities. It should be based on where their skills would be best utilised. Yes, some of the issues around prescribing items are really quite important because you do not actually want to penalise patients by not being able to access their medication because they are seeing a nurse practitioner.

Senator FIERRAVANTI-WELLS: You made some comments on the efficient use of palliative health and aged-care resources. Can you give me a practical example of where we could see greater coordination? I know you talked about it, but give us a practical example of where the current system is falling.

Prof. Phillips : I think there are many levels. One of the challenges for specialist palliative care services as we move forward is to think about how we deliver services. We talk a lot about a population based approach to palliative care delivery, which is that specialist palliative care services ought to be reserved for people with the most complex needs and then they ought to be available to work with colleagues in perhaps cardiovascular disease or renal disease to provide consultancy services but not necessarily take over management of the patient. Or they might be needed to support GPs to be able to deliver palliative care. I have lost my train of thought!

Senator FIERRAVANTI-WELLS: I was asking about coordination between palliative health and aged-care resources.

Prof. Phillips : Yes, that is right. For specialist services it is important that we are able to determine which patients would most benefit from our expert input and whether that is going to be ongoing or just on a short-term basis. Then I think it frees up palliative care services to be more available to others. I would see the same model working in residential aged care, because what you really want to do is build the capacity of a whole range of healthcare providers so that they feel more confident and capable in providing end-of-life care. For example, in some jurisdictions in Australia some area health services may view that residential aged care is funded by the Commonwealth and, therefore, if you are a state funded palliative care nurse it is not your responsibility to be going into aged care. Whereas I would actually say it is a really important role for a specialist palliative care service and/or nurse to be partnering with aged care, GPs and care workers to enable them to be delivering better care. That is not necessarily for all residents but for those with specific palliative care needs that are more complex and that the facility cannot not manage itself. Perhaps that is an example.

Senator FIERRAVANTI-WELLS: Can I take that one step further? In that sort of instance where you have those sorts of specialist palliative-care services and you have MBS services attached to those services—would that assist?

Prof. Phillips : Are you saying that if there were—

Senator FIERRAVANTI-WELLS: Yes, if there were. That way there would be services that could be brought in for a particular person by a service provider and that person could claim that MBS item.

Prof. Phillips : I am wondering if you are thinking more of a nurse-practitioner model that is available to enter multiple aged-care facilities across a geographical area. Yes, but they need to be working in partnership with geriatricians and GPs.

Senator FIERRAVANTI-WELLS: So the definitions of those sorts of items have to be very specific in order to be able to attract the rebate; that is how you would do it. You are basically saying that you have to set out very specific descriptors to be able to attract the MBS item.

Prof. Phillips : Yes.

Senator BOYCE: Professor Phillips, you have spoken about various collaborative efforts. I note that one of your recommendations is the integration of palliative care as a fundamental part of cancer care. Are you suggesting that palliative care within cancer care should be separate from other sorts of palliative care? What do you mean by that?

Prof. Phillips : I think that really speaks to the variation we see in palliative care services across Australia. There are many examples of—

Senator BOYCE: And the history of where it has come from.

Prof. Phillips : Yes. There are many examples of cancer services were palliative care is very well integrated into the service, but, no, we would not actually see it as being just palliative care just for people with cancer—definitely not.

Senator BOYCE: When you say integration as a fundamental part of cancer care, you would see this as a discrete palliative care coming into the care of that particular patient?

Prof. Phillips : Or being available. Palliative care does not always necessarily have to be just at the end of the life; many patients having cancer treatment might have a significant symptom burden would benefit from perhaps having a visit at home from a home based palliative-care service—not with the intention of managing their end of life care but rather around symptom management—and then the patient would be discharged.

Senator BOYCE: I think someone talked earlier about symptoms that come and go with some particular cancers. I am asking most witnesses about the definition of palliative care. I have an obsession about standards and definitions, and it seems to me that if we cannot agree as to what palliative care is it is a little hard to do much else. Has your society looked at the issue and, if so, do you support the WHO definition, which is one that was suggested earlier today, or do you have an option?

Prof. Phillips : I think the WHO definition is probably the most widely accepted definition. There are a few key words in the WHO definition which I am sure others will have pointed out to you. The key one is that it says that palliative care is an approach; it is not necessarily saying that it is just for specialist services but rather saying that it is an approach to care. There is probably the definition of palliative care and there is a definition about what constitutes specialist palliative care and a better understanding of what a palliative approach is.

Senator BOYCE: In terms of specialist palliative care, your members would provide specialist palliative care, because, again, we got a bit stuck in the—some people use the term specialist within the health framework to mean a medical specialists.

Prof. Phillips : This would be doctors and nurses predominantly working in palliative care.

Senator BOYCE: Your membership base—is that right?

Prof. Phillips : Probably not everybody with COSA would consider themself to be a specialist palliative-care provider.

CHAIR: It could be allied health as well, because you get people in allied health also.

Prof. Phillips : Yes.

Senator BOYCE: That is what I was trying to get to.

Prof. Phillips : That is quite correct. It is really about the percentage of time that you are working in that area.

CHAIR: I think we have covered it pretty well. Thank you, very much.