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Community Affairs References Committee
Palliative care in Australia

BOYLE, Associate Professor Frances AM, Former Executive, Medical Oncology Group of Australia

FRANCIS, Ms Kay, Executive Officer, Medical Oncology Group of Australia

ACTING CHAIR ( Senator Moore ): We reconvene our hearing and I now welcome representatives of the Medical Oncology Group of Australia to today's hearing. Information on parliamentary privilege and the protection of witnesses and evidence has been provided. If you have any questions about that, please ask any of us or the secretariat. We have your submission, No. 4, so you must have got in very quickly. I now invite either or both of you to make an opening statement, and then we will go to questions.

Prof. Boyle : Thank you very much for the opportunity to speak to this subject, which is dear to the hearts of all oncologists. Cancer in the past of course was synonymous with death. That was what happened when you got cancer and, until fairly recently, survival rates in Australia, as around the world, for many cancers have remained poor. As we have become better at treating cancer earlier and diagnosing it earlier, of course we now have more cancer survivors, but they may have significant symptom burdens related to their disease, even after their treatment has finished, which may require specialised intervention to manage. We also have the problem that a number of people with advanced cancer, cancer that has spread away from the original site, are inevitably going to die of their disease, but they often survive for much longer than they did in the past, as particularly drug treatments have become available that have extended their survival. They may of course have hopes for cure that are dashed as time goes by, but significant symptoms which may come and go over that time. So many people with advanced cancer live with the disease for years. The end-of-life phase, which is the traditional place of palliative care, may in fact be quite short as they are maintained at home, hopefully with better quality of life by better treatment. So what we are seeing is a trajectory where people may have symptoms that extend over a long period of time and their carers need assistance in managing those over a longer period of time, but then they have a fairly rapid decline and a need for more intensive end-of-life care.

In Australia we have two problems. The first is that in that area of traditional end-of-life care there is a great lack of conformity around the country in terms of access to specialised palliative care services, and the heart-wrenching comments that have come to us from our members who work in regional and rural Australia really reflect that devastation of the oncologist trying to manage these patients right to the end, often as the only oncologist in town without the back-up of hospice facilities and community nursing and sometimes even access to basic drugs in local pharmacies that you would need for end-of-life care. So that is one problem. In the city, it is not so bad for that traditional pointy end of palliative care, but in the country it is a big problem.

The second issue that we have is that there is now increasing evidence that early referral to palliative care can not only help to keep people out of hospital, help manage their symptoms and assist their carers; most recently there is evidence that you can prolong their survival if you actually manage their symptoms better, and that is a massive change in the way we have looked at palliative care—pulling them right forward to much earlier in the game rather than just waiting for those last five minutes when you are 23 nil and about to go out the back door. For both of those reasons palliative care is going to need to have a significant upskilling, a change in the way it is delivered and a change in workforce. That is why we are passionate about doing whatever we can to help.

ACTING CHAIR: Thank you.

Senator BOYCE: You were saying earlier that you might be the only oncologist in town. You have noted the report of the inquiry into access to palliative care services. Of course, there are situations where there is no oncologist in town.

Prof. Boyle : Correct.

Senator BOYCE: Could you talk a little about what you see as some of the best practice in terms of providing palliative care services in areas where there is nothing local?

Prof. Boyle : In local areas where populations tend to be fairly small, I guess, the local doctor, the GP, is usually the first port of call. There are towns that do not have a GP and where specialist nursing staff may be of assistance. A lot of palliative care problems can be relatively quickly sorted out by nurses who are properly trained, but they still need access to prescribers. You basically cannot run a non-prescribing service in palliative care and you also need pharmacy back-up—

Senator BOYCE: You have almost hour-to-hour changes in medication needs.

Prof. Boyle : Absolutely. And your little kit of drugs, for instance, that you might need to manage someone dying at home is mostly tightly regulated as schedule 8 drugs. So they are not the sorts of things that your community pharmacy is going to be happy to supply without appropriate authority and in the kinds of amounts and volumes that might be needed. Specialist nursing staff can do a lot but they cannot do that without prescribers. We think that some of the newer technologies might be able to assist. We have a project with the National Broadband Network, for instance, which has called for research projects to look at delivery of care using telemedicine, and things like managing people's pain using the broadband network in rural areas might well be feasible. We do not know whether that will get funding, of course.

Senator BOYCE: What do you mean when you say 'use the broadband network' to manage someone's pain? What are the actual practicalities? Is the network in their bedroom, or at the GPs or where?

Prof. Boyle : At its most basic, if you have a little Skype camera sitting on your laptop at home, you can interview a patient. From a regional cancer centre a specialised nurse, for instance, would be able to interview a patient and a carer, look at what pain levels they have, look at the medications they are taking, make suggestions about altering those and then check back in with that patient 24 hours later to see what has happened. A group of us in Australia are working on some national guidelines for cancer pain management and trying to pull together all the evidence and turn that into a program—if this, do that; if that, do that.

Senator BOYCE: This is a group within medical oncology?

Prof. Boyle : There are a number of medical oncologists involved.

Senator BOYCE: I just wanted to know who the group was.

Prof. Boyle : The University of Sydney.

Senator BOYCE: You are not the only organisation—I think Blue Care also—that mentioned getting drugs from the local pharmacy can take a number of days and that in-home oxygen may not be available. These all seem like pretty simple things to fix. Whose job should it be to fix it? How should it come into the system to get fixed?

Prof. Boyle : Some of it is about funding, clearly. For oxygen, we need a system where the prescribing of oxygen for palliative care patients does not vary from state to state and where the funding of that is feasible for patients across a number of different backgrounds and health funds, repat, et cetera. But everybody has a different system. Some palliative care community services fund oxygen and others do not. There is no uniformity about that. The issue about drugs in regional pharmacies, for instances, is somewhat about the cost of those drugs. Morphine is cheap but some of the other new opioids are quite expensive.

Senator BOYCE: Do they have short shelf lives?

Prof. Boyle : No, not particularly. Pharmacists will not hold duragesic patches on the shelf in 16 different sizes and doses because they are drugs that are expensive. Something that allowed pharmacists to hold those would be easier. I do not know what mechanism you would use for that.

Senator BOYCE: You should be able to say that there is an 80 per cent chance that this patient will need this next week.

Prof. Boyle : Correct.

Senator BOYCE: So we need a system that would allow that to happen and without a cost if it did not.

Prof. Boyle : At the moment, as you are probably aware, most opioids are available on authority prescription in increased quantities, but the number of GPs who are willing to use that seems to be small and requires a phone call. You cannot get repeats. If you ring you can only get one month's supply of most strong opioids so, of course, for oncologists it is one more thing to pick up the phone, yet again, in the middle of a busy consultation, whereas you can get a week's worth with an ordinary script. Some of the regulations around the time-consuming nature of patients only being able to get a week or a month at a time just wastes time.

I know why those rules are there. Obviously they are there to prevent diversion of opioids. Clearly there is a lot of community concern about opioids. Getting people to take them is a relatively major barrier. One of the things a group of us have worked on in the past is education for patients and families about cancer pain management. I have brought some copies of that for you. One of the key messages coming from our research is that people are worried about addiction. That is one of the barriers to them taking opioids. When the community newspapers start talking about drug diversion and people being hooked on opioids, it just feeds that paranoia amongst cancer patients. Systems to try to educate patients and carers, as well as managing GP education, are vital.

Senator BOYCE: It is as much about educating the carers as the patients, I would have thought, in those situations.

Prof. Boyle : Carers can often be a barrier to the delivery of pain relief.

Senator BOYCE: Do you as a group have a view on the interaction of advanced care plans and health directives?

Prof. Boyle : It is something that we have not developed a formal policy on. But from the point of view of the practicalities, different states have different approaches to this. If you say to a patient—if you want an advanced care directive, different hospitals have different approaches. Then, when you have gone to the trouble of writing your directive and it sits in the oncologist's file, in the rooms, but you are admitted to the local emergency department there is no way of carrying that piece of information. The intern or resident faced with giving that patient antibiotics, resuscitating them or putting them on a drip or ventilator does not have access, even in the best-laid plans. This factors into the whole idea of patient-held record. E-health issues will need to include a section on advanced care plans.

We have also done some research looking at, once again, education of patients and carers, to try to encourage them to take up doing those things. But even if they have gone to that trouble, not all the necessary people need to find those documents at a time when the rubber hits the road.

Senator BOYCE: Is there any tension between the fact that your care plan is probably a moving feast and in many cases the directive is a static document?

Prof. Boyle : It is, but if they are written carefully they can allow a certain amount of clinical judgment. Most sensibly written plans will say: 'If I have a life-limiting illness like cancer and there comes a time when specific anti-cancer therapy is no longer useful to me and measures to extend life…' rather than saying something like, 'If I get cancer, just let me die.' The length of time people live with advanced cancer, with the ups and downs, is not relevant to how we used to think about that.

Like many awkward conversations in life, raising with a cancer patient—who you might have known for some years—that this might be a good time to think about making advanced care directives will upset them if they have been still hoping for an extension of life. There comes that day when you start talking about palliative care and talking about advanced directives: 'Not for resuscitation' orders, et cetera. We know that busy oncologists avoid those conversations because it is just easier to give another round of chemotherapy than it is to sit back and say, 'Today's the day we need to think about these things.' Kay helps to manage a lot of training with our trainees in medical oncology about the communication skills that are needed to bridge that very difficult conversation. We know that junior doctors get almost no training and they are sometimes faced with a patient who lobs into hospital unwell, unexpectedly, and their skills are often lacking. It is a very upsetting and difficult conversation.

We did some research recently to prove that you can train people to do that and I have brought copies of that paper for you. It has just been published. But it is a resourcing issue. Yes, we know how to train people. Show us the money and we can do it!

Senator BOYCE: Do we have a copy of that report you did in Tamworth and wherever? It is the David Goldstein study on improved access to specialised palliative—

Prof. Boyle : The Dubbo, Tamworth, Albury and Bega one. That is being written up for publication at the moment but we can certainly—

Ms Francis : We can make that available to you.

Senator BOYCE: Thank you.

Senator FIERRAVANTI-WELLS: I want to explore a little bit more about your comments on the complementary medicines. You say in your submission the 'clear lack of appropriate legislation and monitoring regarding complementary medicines'—do I read in that it is not the issue of being complementary but actually how they work in conjunction with other medication that people may be taking? Could you just—

Prof. Boyle : There is a number of different issues around the whole complementary sector in oncology which is one of the big areas where people use complementary medicines. It is caused by a number of things. It is caused by the fact that not all cancers are curable—

Senator FIERRAVANTI-WELLS: Professor, can I just stop you. It is a sort of classic situation: they hear, 'If you take this substance, it's good for avoiding cancer,' and so all of a sudden an older person might go out and buy packets of this stuff and be taking it, and perhaps not even tell their doctor that they are taking it. Is that the classic situation?

Prof. Boyle : I think cancer patients are vulnerable. They are increasingly using the internet and are not always savvy in that regard. Traditional cancer treatments commonly have significant side effects, so most of them are looking for things that look simple, do not have any side effects and that you do not need to have injected intravenously. So they use a lot of complementary medicines and they often do not communicate with their oncologist about those. There can be the potential for several things. One is side effects in their own right. The second is that they can interfere with the activity of standard anticancer treatments. The third is that they often reflect that people have not been having the difficult conversations about what is actually happening and that, as patients become increasingly desperate, if they are not offered appropriate support from palliative care then they become more vulnerable to the shark cartilage merchant, the trip to Mexico and other sorts of things that are not going to be very helpful to them.

Complementary therapy use in breast cancer, for instance, which is an area that I work in, is associated with anxiety. The more anxious you are, the more likely you are to use complementary therapies—and they do not work at fixing your anxiety. It continues, and you continue to consume. So in the advanced cancer setting where anxiety is a major problem for patients and families, they are often wasting a lot of resources on things that are not helpful to them because they do not have good backup and support to manage the emotional difficulties associated with the cancer.

Senator FIERRAVANTI-WELLS: Tell me: do you think that there should be some sort of inquiry, at least, into how those complementary medicines can work in complement with other treatments, but at the same time find that balance? That is really where I am coming from, Professor. I think there will always be use of complementary medicines. It is quite prolific in our community but, if I understand correctly, it is that balance and that understanding that you are underlining. Does that—

Prof. Boyle : Also a lack of research, and that is something that could readily be addressed. The NHMRC has this year an additional section for a different panel, for instance, looking at complementary therapies research. There are a number of groups around the country who would have the appropriate scientific rationale and background to do appropriate research in that area. It is still hard to combat the internet and 'my friend told me across the back fence'—but if there is genuine benefit to some of these things then fostering research in that area may be helpful.

Senator FIERRAVANTI-WELLS: In the cancer area, what are the most common forms of complementary medicines that people are taking?

Prof. Boyle : Probably herbs and vitamins would be among the most common. They might range from Chinese herbs to, sometimes, things prescribed by general practitioners who also have complementary therapy practices. Often the difficulty is that they are not labelled with what is actually in them, particularly if they come in a bottle with black liquid in it. It is almost impossible then to work out what the interactions might be with chemotherapy drugs. Many chemotherapy drugs are made from plants and for that reason they have the potential, in the liver, to interact and change each other's metabolism. We have the greatest respect for medicinal plants. We cure a lot of cancer with them—but by knowing what the active ingredient is and purifying it rather than by having something that you are taking orally, with poor labelling. The other thing, of course, is that there is increasing evidence that things like meditation, relaxation and so forth are beneficial to cancer patients. I do not think that the herbs and spices really fall into the same category as many of the other mind-body type things where there is clear evidence of benefit. We encourage patients with advanced cancer to become involved in those things.

Ms Francis : On the issue of regulation of complementary medicines, this is something that has long been a concern for Medical Oncology Group in that no-one is responsible for complementary medicines in this country where there is an enormous amount of regulation around approval and access to drugs. We have open slather when it comes to bogus treatments, as Fran said, from a heart palpitator from Mexico or a pill that someone is recommending. The media are constantly hyping up all of these quite often bogus treatments and recipes for a 'solution' to cancer or any number of diseases. But we have a totally unregulated market. It is absolutely extraordinary, when we have such an effective health system and controls in place in all other areas of drug access in this country.

Senator FIERRAVANTI-WELLS: Your comments do not appear to deny that there should be complementary medicines—

Ms Francis : No, not at all.

Senator FIERRAVANTI-WELLS: There is a role for them but it is part of a more holistic and a more—

Ms Francis : Exactly. We need to have, whether it is the Therapeutic Goods Administration or some other new body that needs to be established in the Department of Health and Ageing, I think it is time at a federal level that we address this.

Senator FIERRAVANTI-WELLS: I think there is now quite a high usage of complementary medicines in Australia.

Ms Francis : I think that something like 75 per cent of patients across the board in Australia use some form of complementary medicine, regardless of their condition.

Senator FIERRAVANTI-WELLS: Yes. I am not sure if this was dealt with before I arrived, but I just wondered if you had any comments in relation to the Productivity Commission's findings and in particular its comments and recommendations in relation to palliative care. This is the Productivity Commission's report Living longer. Living better.

Prof. Boyle : Certainly it is raised by our palliative care physicians on a regular basis that people who are dying quickly of cancer are actually no great problem to anyone, because they are either in hospital or they are in specialist palliative care services, and at least in the city there is some backup around those issues. What there is very little support for is people who have cancer as a co-morbidity along with three or four other conditions where the cancer may not be the only cause of their death but is an important cause of symptoms, and where they are in aged-care facilities because they are not dying fast enough to be in a palliative care unit and they do not have family support to die at home. Usually this is the surviving member of a couple. The first person who dies has the second one to look after them, and that is managed reasonably well. The second one, who dies perhaps a few years later, may have co-morbidities and nursing home placement and there are a lot of concerns about whether patients in nursing homes get adequate pain relief, for instance, particularly with medications that need to be given as needed rather than on a regular basis.

My understanding is that there is a great use of some of the long-acting opiates—things like the patches that you put on your skin once a week, and if somebody forgets to put them on you are in deep trouble, because you get withdrawal symptoms over the next day or so if you have got dementia or if there is a communication problem because of a stroke. Remembering that the patch has not been replaced is a big problem, and those are used really as an alternative to what would say PRN medications, because for patients who cannot communicate well, flagging that they are in pain and getting attention from nursing staff, particularly with opiates, where you have got only maybe one registered nurse on in a nursing home after hours, so the signing out of PRN opiates is very difficult. Those people are mostly on a patch every three days or once a week, and that does not really give good care for those fluctuations of cancer pain that can happen. I know it is the thing our patients fear more than anything: being not independent at home and in a place where you are needing care but you are not getting adequate pain relief.

Senator FIERRAVANTI-WELLS: Increasingly, as more and more people want to stay in the community, this is going to be not just an issue in the aged-care facilities; it will be in the community. With the suggestion of the Productivity Commission to move to an entitlement based care system, do you see scope, Professor, for items in whatever schedule that that could cover which are a bit more specific to dealing with these issues in terms of palliative care? I am talking specifically now about older Australians, because that is the area that was covered by the PC report. Do you have some thoughts in relation to the practical items that you would see on those sorts of schedules?

Prof. Boyle : I think something that allows it to be financially viable for palliative care physicians to see patients at home and for specialist nurses to be able to be appropriately recompensed. These are not quick consultations, when you have got somebody who has got three or four other medical problems and a serious cancer issue. If you look at how productive you and your car might be traipsing around the northern beaches of Sydney, you might see four of five patients in a day, whereas, if they came to the office to see you, you might see 10 or 20. Clearly, that is not a way to earn a living with the way that things are structured at the moment.

Senator FIERRAVANTI-WELLS: Certainly not with the roads on the northern beaches, which is where I live, so I do understand your comment!

Prof. Boyle : Not with the roads on the northern beaches. If you were Peter Moore traipsing between the Hawkesbury and North Head over the course of a day, it would be impossible to be productive and financially viable across that setting. Even getting a system where palliative care physicians feel comfortable actually charging patients anything has taken the last some years of mind set change. Palliative care has grown in Australia very much from the charity sector, from a public hospital but more than a public hospital sort of mentality—particularly the UK hospice movement. Even encouraging people to think that patients might value their service to the extent that they might be willing to be out of pocket to even a small extent to get better care has taken a mind set change within palliative care physicians.

Senator FIERRAVANTI-WELLS: But hypothetically it could be an MBS item with a rebate number and it could be available just like a home visit. I think people do not have the same sort of view if it is a home visit by a doctor—not that they happen very often, but it is the same sort of thing. What you are saying is that there is an additional hurdle. They might call the doctor at home, but a palliative care physician is a different ball game.

Prof. Boyle : We see an increasing need to have specialist palliative care doctors and nurses integrated at every level of cancer care in Australia. We are willing to do what we can to help. It is not a matter of just demanding solutions and then sitting back. We know that people who train in palliative care need to spend some time in oncology. They cannot be not cognisant of the way cancer treatment is happening now. It is often difficult to find oncology training positions to rotate them into. If we are talking about an expansion of the palliative care workforce, we have got to do our bit to make sure that those training positions are available at our end to pull them in so that, if they are going to be involved earlier in the care of cancer with patients, they need to know more about chemotherapy, more about radiotherapy, and they need to be involved in communication training with our trainees, not just on their own. So we would be certainly very willing to look at methods to increase access to training. For instance, at our hospital, which is a private hospital, we have put in an application for an extended settings job to rotate the palliative care trainees into. Like everybody else, we are waiting to find out what happens about that funding, but certainly there are an increasing number of oncology units in Australia that could be providing some training for palliative care physicians.

Senator FIERRAVANTI-WELLS: How many oncology patients are in some form of aged care, whether it is residential—how many are over 65 is basically what I am asking.

Prof. Boyle : I do not know the answer to that, but we can look.

Senator FIERRAVANTI-WELLS: Thank you. It is just so that we can understand how many would be captured by the aged-care system as opposed to those who are less than 65.

ACTING CHAIR: I have just one question, about the e-health training modules that you developed. There is a sentence in your submission that jumped from the page: 'as viable funding options expired.'

Prof. Boyle : They were set up with the rural health support education and training program and then, to some extent, sadly, withered on the vine, because they require ongoing support.

ACTING CHAIR: So you have the basic module but there is no money to update them and keep them.

Prof. Boyle : Correct.

ACTING CHAIR: Is there anything that you wanted to tell us that we have not got from questions.

Prof. Boyle : No, I will just leave these with you.

ACTING CHAIR: Thank you, very much. Senator Siewert has come back, so I will call the witnesses from Palliative Care New South Wales.