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Community Affairs References Committee
Palliative care in Australia

HABERECHT, Mr John, President, Palliative Care Nurses Australia

MILLS, Mr Jason, National Committee Secretary, Palliative Care Nurses Australia


CHAIR: I welcome representatives from Palliative Care Nurses Australia. You have been sitting down the back for quite a bit, so I know you know my spiel. You have information on parliamentary privilege and the protection of witnesses and evidence?

Mr Haberecht : Yes, thank you.

CHAIR: We have received your submission, which is our No. 45. I invite you to make an opening statement. We have a copy of your submission here, if you want to go through the main points.

Mr Haberecht : I will. I thank the committee for inviting Palliative Care Nurses Australia to make a submission and to give evidence. I will briefly go through the points here. Palliative Care Nurses Australia represents all nurses working with people who are dying and with their families. Our representation includes specialist palliative-care nurses and those working in other settings at end of life, such as aged care. As palliative care nurses we provide holistic care—that is, to body, mind and spirit—to patients and families at end of life. In many settings, palliative care nurses work autonomously and demonstrate leadership to other nurses and health professionals. We advocate for patients, families and communities and we participate in and lead research in the area.

On our recommendations, I have gone to our original submission and pull some of them out, but I have added some material. We recommend palliative-care education for all health professionals, including Aboriginal and Torres Strait Islander health workers and personal carers in the aged-care setting, at both undergraduate and postgraduate level. I have used one example of postgraduate education, which is not formal education. It is the Program of Experience in the Palliative Approach, which I imagine the Department of Health and Ageing mentioned in its evidence. That is an excellent example of education in palliative care for nurses and other health professionals who do not have a specialist palliative care expertise but have an interest in the area. We also recommend that that education be available through different modes, such as distance education, webinars et cetera, so that health professionals in rural and regional remote areas have access.

The wishes and needs of the patient and family are central, of course. To help remedy the workforce situation—because, as with other health professionals, the numbers of palliative care nurses are not expected to keep pace with the increasing need—we recommend embedding palliative care principles in undergraduate health programs, such as through the PCC4U program. We have heard, I think it was from the ANF representatives, about the crowdedness of the undergraduate curriculum, but we think palliative care really should be a basic part of all health professional curricula, as well as the establishment of professional mentor programs.

Improved funding for palliative care is another recommendation. At present, that funding comes from the Commonwealth to the states, who then decide how that funding is disbursed in that state. Most palliative care takes place in the community, but the funding break-up does not always reflect that. While this is anecdotal—they do not have statistics to back it up—a lot of palliative care funding goes into the more acute areas, rather than the community.

The GP is a very important part of palliative care in the community, and we recommend adequate remuneration of GPs because of the complex care that is involved. At the moment, many GPs are reluctant to take on palliative care clients, for various reasons, and we see this as one way to remedy that situation. We also recommend a greater role for palliative care nurse practitioners working with GPs in specialist palliative care teams and in residential aged care.

We recommend a nationwide rollout of the Palliative Approach Toolkit, which was developed as part of the comprehensive evidence-based palliative approach in residential aged care, incorporating an end-of-life care pathway that was specifically developed for the aged-care setting. I have included a paper from the Brisbane South Palliative Care Collaborative, who developed that; I think you should have that in front of you now. A major expected benefit of such a rollout would be fewer inappropriate presentations at emergency departments and admissions to hospitals. We would anticipate that, through such a rollout, there would be benefit not only to the patients and families because of decreased stress and trauma but also to the health system generally because of decreased costs. We also recommend, as in our original submission, that all major hospitals have a service such as Hospital in the Nursing Home, which was established to help prevent those inappropriate admissions at the emergency department level. So, if people are not stopped from being sent to hospital in the first place, hopefully we will have teams in the emergency department or associated with it that can be more or less a safety net to prevent those inappropriate admissions. We recommend creation of a credentialling program to recognise specialist palliative care nurses and a national rollout of the existing competency standards for specialist palliative care nurse. Finally, we recommend that advanced care planning be made an integral part of the health system and that it be built into the personally controlled electronic health record.

CHAIR: Mr Mills, did you want to add anything?

Mr Mills : No. Thank you.

CHAIR: Senator Moore.

Senator MOORE: Thank you and thank you for the submission. In terms of palliative care nurses, you say in your submission that it is open to any nurse. They do not need to have specialist palliative care credentials as long as they are working in the field. Is that right?

Mr Haberecht : What I am saying there is that membership of Palliative Care Nurses Australia is open to any nurse. In terms of what we describe as palliative care, generally specialist palliative care nurses would see that for a nurse to be described as a palliative care nurse they should have that specialist preparation. That is why we make the distinction between palliative and end of life care, for example. Anecdotally we hear many people who work in aged care who say, 'Oh yes, I do palliative care,' and certainly they look after people at end of life, but they do not have that specialist knowledge generally. Did that answer your question?

Senator MOORE: We had evidence earlier today from an aged-care specialist nurse who made the comment—I do not want to verbal her, but along the lines that the issues of palliation actually are the issues of sound nursing that you maintain with people without pain, with respect, and you look after their issues. Is that not true? I do not want to get into a philosophical debate but that was one of the things that was put on record, that sound nursing practice—

Mr Haberecht : Yes. Palliative care at its essence is good nursing care, but it certainly goes beyond that in terms of the specialist knowledge that is needed for excellent symptom management. For example, pain management: yes, all nurses would have a level of knowledge about pain management. However, the specialist palliative care nurse would be able to distinguish between neuropathic pain and other sorts of pain and know that the medications that would be used for those other sorts of pain would not necessarily work for the person with neuropathic pain. You would not rely so much on your opioids—

Senator MOORE: Sure. And when you add that to the dementia—Alzheimer's Australia submission about people who are non-verbal—there is another level of skill to be able to acknowledge, identify and respond to pain which people cannot describe or complain about.

Mr Haberecht : Yes.

Senator MOORE: I did ask the other group of nurses who appeared before us about the education processes in Australia—and we are going to follow up on those. You did mention that in your opening statement and also in your submission. I am interested in the priority which it has given to palliative care in the range of nursing opportunities that are around the country and also how it compares overseas. It is a marvellous and critical area of nursing and I am not absolutely sure that it is given that priority in the training. Your understanding of options post-graduate?

Mr Haberecht : I think the post-graduate options are limited generally, but I think I will hand this over to Jason, who is a relatively new graduate and probably can answer it better than I can.

Senator MOORE: Mr Mills, where did you train?

Mr Mills : I actually studied here in Canberra, at the University of Canberra. I did my graduate year in Victoria.

Senator MOORE: Right. And at either of those institutions was palliative care seen as a core part of the training?

Mr Mills : Yes and no. I was present during the ANF's submission and I was listening with interest and I can probably speak a little to some of the discussion there as an early career nurse, someone who has just been through undergraduate and postgraduate education. In the curriculum where I studied palliative care was not an elective and it was not a core unit, per se. It was imbedded within a subject of chronic illness.

Senator MOORE: Okay

Mr Mills : So, as was referred to before, there is discrete representation and it does differ across the university sector across the different states. For example, some universities have a subject on spiritual care whereas others do not. I completed a graduate certificate in palliative care during my graduate year and, as was discussed this morning when you were asking about the costs, I received a scholarship from the state government DHS in Victoria. It was administered through Palliative Care Victoria. That was about $2,600.00 and the course was about $7,500. So it is a contribution; it does go some way.

Senator MOORE: Is the other five grand associated tax deductible?

Mr Mills : It would be, yes.

Senator MOORE: I was checking; there would have to be something with that gap.

Mr Mills : Yes, you get a bit of a tax—

Senator MOORE: Did you have to compete for that scholarship?

Mr Mills : It was a competitive scholarship.

Senator MOORE: They were advertised and people competed for them? My understanding is that there would be fairly limited numbers. Is that right?

Mr Mills : That is right. I completed that last year. I was interested in upgrading that qualification to a master's level and I did apply. I think we did make reference in our original submission that there was a larger scholarship which is administered through the Royal College of Nursing Australia. It is provided by the Commonwealth and that is extremely difficult to get, anecdotally. I applied for it myself. That is why we are suggesting that you have many different specialty areas of medicine practise competing for one pool of funding. I think some dedicated funding would go a long way to nurturing the future workforce in palliative care.

Senator MOORE: What sparked your interest, in a nursing school where the core subject was chronic disease, which is an extraordinarily important area with so many areas of chronic disease being identified and having specialist treatment, and then a subset of that being the whole area of palliation? What struck your interest as a young student to make you want to do more in this area? What was the grab?

Mr Mills : I decided I wanted to be a palliative care nurse after I volunteered in a hospice, so I entered into studies in nursing with the view specifically that I wanted to be a palliative care nurse. That may or may not be unique but certainly, among the cohort that I studied with, my peers, I did see that flame being sparked within the subject. It was very well articulated in the course and I witnessed it amongst my peers. I was pleasantly surprised that there was within the future generations of nurses a passion there if it were given a chance to be linked. In my graduate year I in some ways met some resistance. There seems to be a perception, which perhaps stems from a society with the view of protecting young people from death, that we need to shield people from it. That runs counter to it; it is not so productive. I came across the view in many forums that you should not and cannot work in palliative care until you have at least ticked off five or six years in general medical surgical nursing. I was a little shocked at that because that was the whole reason that I wanted to become a nurse.

Senator FIERRAVANTI-WELLS: You refer in your submission to the effectiveness of a range of palliative care arrangements. You say improving communications with and between all stakeholders involved in the care of the resident client is vital. You make reference to mandatory palliative care case conferences and automatic ACFI claims for palliative care. Do you mean additional ACFI funding specifically for palliative care group conferences between doctors and the various stakeholders?

Mr Haberecht : My understanding is that there is already funding available for those case conferences.

Senator FIERRAVANTI-WELLS: You are saying make them mandatory?

Mr Haberecht : Yes.

Senator FIERRAVANTI-WELLS: For all palliative care cases?

Mr Haberecht : Yes. I must admit I cannot remember exactly what we said about the frequency with which those case conferences should happen. My position would be that good professional practice—

Senator FIERRAVANTI-WELLS: Would dictate it in any case?

Mr Haberecht : Yes.

Senator FIERRAVANTI-WELLS: You make an interesting point about the implications of the high number of staff from non-English-speaking backgrounds providing the bulk of end of care in aged-care facilities. This has not been an issue that we have touched upon today, but I must say it certainly is an issue as I have travelled around and visited aged-care facilities. It often leads to not only issues about language difficulties, but also issues about culture and also prejudices, if I can put it that way—for example, with a returned soldier and a worker from an Asian background. It has been put to me that these things do cause issues. Tell me a little bit about that. You say consideration needs to be given, but how do we practically deal with that?

Mr Haberecht : I might have to take that on notice. This was actually put in the submission by one of our nurse practitioner candidates from the aged-care area. I can certainly talk to it, but I—

Senator FIERRAVANTI-WELLS: Please, by all means, do take that on notice. It is an issue in aged-care facilities and particularly in a palliative setting. We have raised it this morning. My question is not only about the comment that was made about the bulk of the end of care. There are two components to my question: there is the issue about language and communication between the residents and the workers; and there also potentially the issue of the sensitivities that could arise as a consequence of the views of, in particular, the resident and how that is a reaction that can happen. Please, by all means, take that notice.

Mr Haberecht : Yes.

Senator FIERRAVANTI-WELLS: Also, in your opening statement you made reference to adequate remuneration of GPs for palliative care. There are rebates there for home visits. Are you suggesting that it should be an additional MBS item?

Mr Haberecht : Yes. The nature of palliative care is that it is very complex care, as I think I mentioned. If a GP goes out to do a home visit, they would be likely to have a number of symptoms to have to deal with. They would be looking at the emotional, spiritual and psychological welfare of the person. It is not something that they are going to be able to do in a 10- or 15-minute visit. There may be some visits where they can do that, but if it is an initial visit or a visit where they are called out because of some issues, they are likely to need to spend considerable time with the patient and family.

CHAIR: One suggestion that was made to us this morning—I am not sure if you were here then—was that the GPs become essentially the case managers, or certainly originally draft the care plan. Is that something you have considered?

Mr Haberecht : Knowing the workload of most GPs and their reluctance to take on anything extra, I do not think many GPs would be keen to take on anything extra. Nurses certainly do take on the role of being a case manager, a case coordinator, even if they do not have that actual title. For example, when I worked at the Princess Alexandra Hospital with their palliative care consultation liaison team, a very big part of our role was coordinating complex discharges. That was very much a coordination, case management type role, except it did not extend beyond the hospital boundaries. If we were looking at a role where somebody took on the coordination role across settings—that is, from the acute setting into the community and back again—there would be a lot of value in that. I think nurses are admirably equipped to take on the role of case manager.

Senator FIERRAVANTI-WELLS: The next point you made was about the greater role for palliative care nurse practitioners. I am not sure if you recently saw a program that examined quite a successful pilot by Parkinson's Australia. There was a nurse practitioner and it was in the Nowra area, in Gilmore.

Senator MOORE: They came and talked to us about that. It was fascinating.

Senator FIERRAVANTI-WELLS: It seems to me that there is a similar role there. That is what you seem to be pointing to, where you have nurse practitioners going to people's homes and managing pain, obviously as part of a team. That is the sort of thing that you are thinking about. And there would be a Medicare rebate for that—is that what you—

Mr Haberecht : Yes, that is correct. Some nurse practitioners are already working with GPs. They are in the GPs' surgeries seeing people and going out to visit them as well. They can take a lot of the load off the GP for the more run-of-the-mill issues that might arise. If somebody's pain management needs changing but nothing is really new apart from a slight increase in pain, then the nurse practitioner is able to just increase the current medication.

Senator FIERRAVANTI-WELLS: There is an extension to that—for example, Mrs Smith is at home and has a series of things that need to happen around her to keep her comfortably at home. At times, it could be a combination of, in the medical sense, a GP and a nurse practitioner. The nurse may not be at a nurse practitioner level, but nurse facilities could go out to assist as well, as long as it is part of a coordinated team with the GP or the nurse practitioner.

Mr Haberecht : Yes. Having worked as a clinical palliative care nurse in the community, that is very much part of our role: going out, seeing how the patient and the family are managing and organising extra services for the family. Often they struggle with the amount of care that is required for the person with an end-of-life-stage illness at home. When I was working with families and patients, before discharging them from hospital I would say to the family, 'You need to have three able-bodied adults available to be able to do this at home,' because some people would think, 'I can do it by myself,' but they will burn out very quickly. So it is a big ask for families, and as health professionals we recognise that and are very alert to the signs that they need more help.

CHAIR: I have a couple of questions. Senator Fierravanti-Wells covered the case conferencing; I thought it was a very interesting concept. We have also touched on the role of—I am not even going to try to say the acronym—what you just referred to as the palliative approach and residential care tool kit. You know I have been asking this question of several people: have you looked at, or would you take on board looking at, what the government has now suggested is part of its new aged-care package and whether that is going anywhere near what you think needs to be done in terms of residential care?

Mr Haberecht : Yes, I would need to take that on notice.

CHAIR: Absolutely.

Mr Haberecht : I must admit that I have looked on the various websites and have not found any mention of palliative care as yet. I understand it is in there.

CHAIR: Yes, there is masses to wade through.

Mr Haberecht : Yes.

CHAIR: If you could take it on notice, that would be great.

Mr Haberecht : Thank you.

CHAIR: I also was attracted to your idea of a unit of funding. It goes back to the comment you made earlier about how more money goes into acute than into community. I was quite attracted to your idea that 'a unit of funding for palliative care in the community should be developed that takes into account the nature'—and it goes on. Have you worked with anyone on that concept or done any work around that concept?

Mr Haberecht : I have not done any myself. There are people within my networks who I would be able to talk to, saying, 'How would you go about this? How would you start doing that?'

CHAIR: That would be useful if you could, because I think it goes into this case management. I would like to tease out this issue around case management a bit more, because when it first came up this morning it was from a consumer who was taking us through her experience with looking after her husband. She said she came from the healthcare professions and she thought she knew what to do, and it quickly turned out that she did not. She said, on the example of incontinence pads, 'I didn't know where to get them; I didn't know you could get them for'—I think—'a third of the price.' She said, 'I didn't know who to go for support.' It is 10 to one that most people in the community would not know where to start. She was talking about case management. There is the case management from that perspective, but there is also the case management as in how somebody is progressing. Mrs Paschuk-Johnson talked about that—eight weeks and three months out and what sort of care they are providing. Of course we are talking about a multidisciplinary team, but it seems to me we are talking about case management on a number of levels, aren't we?

Mr Haberecht : I think so, yes.

CHAIR: So, when you are talking about community in community care, there is the clinical management and then there are the day-to-day care requirements where you are accessing care and respite. There are those sorts of case management too, aren't there?

Mr Haberecht : Yes. The care of somebody in that situation is complex, and it can change very quickly. So a big part of the role of the palliative care nurse is being able to anticipate what might happen and talking to the family and saying, 'All right, if your relative deteriorates then these are some of the things we might have to look at—for example, putting the person into respite.' So it is helping the family come to terms with the fact that they may have to do that in the very near future. It might not happen, but at least if they have thought about it then they have been able to mentally prepare themselves to some extent.

CHAIR: Throughout the day this has been running through my head too: it takes special skills to do that. I remember that when my father was ill there were some health professionals who I have no doubt were brilliant but who, quite frankly, in terms of personal communication were hopeless. It is a personality thing—not that they were awful people, but it takes a special skill to be able to do what you have just said for people who are doing the caring. There is also a great ongoing grieving process going on, so not just anybody can do that case management and that emotional support.

Mr Haberecht : Exactly. I am glad you brought up the topic of communication skills, because I think that is fundamental to what we do in the area of palliative and end-of-life care. A lot of the problems that arise, particularly in the acute hospital setting, are because many health professionals, particularly medical specialists, are just not comfortable having those conversations about end of life and their communication skills are not necessarily excellent, shall we say.

CHAIR: It seems to me this is a particularly important area. We have not touched on it much, I have got to say. We have talked about education, but we have not talked about how that education happens, in a way.

Mr Haberecht : Yes. It is a whole other conversation, isn't it?

CHAIR: Yes. We have given you a bit of homework. Are there any other questions?

Senator MOORE: No. The submission was great and we have sent you home with homework!

Mr Haberecht : Thank you.

CHAIR: Again, it was really good to hear your personal experience, Mr Mills. That always helps us. Thank you. We will have a short coffee or tea break before the next witnesses.

Proceedings suspended from 15 : 26 to 15 : 48