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Community Affairs References Committee
Palliative care in Australia

HATHERLY, Dr Chris, National Research Manager, Alzheimer's Australia

JACKMAN, Ms Joan, Consumer, Alzheimer's Australia

QUIRKE, Mrs Lyntara, Consumer, Alzheimer's Australia

REES, Mr Glenn, Chief Executive Officer, Alzheimer's Australia

SINCLAIR, Dr Ron, Consumer, Alzheimer's Australia

Committee met at 08:09

CHAIR ( Senator Siewert ): I declare open this public hearing and welcome everyone who is present today. The Senate Community Affairs References Committee is inquiring into palliative care in Australia. Today is the committee's first public hearing for this inquiry. These are public proceedings, although the committee may agree to a request to hear evidence in camera or may determine that certain evidence should be held in camera. I remind witnesses giving evidence that they are protected by parliamentary privilege and it is unlawful to threaten anybody or disadvantage a witness on account of evidence given to a committee. Such action can be treated as contempt by the Senate. It is also contempt to give false or misleading evidence to a committee. If anybody objects to a question, the witness should state the ground on which the objection is taken and the committee will consider the answer and whether we insist on an answer, having regard to the ground that is claimed. If we determine that we do want to insist on an answer, a witness may request that the answer be given in camera.

I very sincerely welcome representatives from Alzheimer's Australia to today's hearing. Information on parliamentary privilege and the protection of witnesses and evidence has been given to you and I know that all of you are very familiar with this process. We have your submission. It is number 44. Thank you for that. I would like to invite you to make an opening statement and then we will ask you a whole lot of questions.

Mr Rees : With your permission, we would like each of our consumers just to say a little bit about their stories, because we think they will illustrate what is both good and bad in the system and really illustrate three themes that I think are in our submission. The first is that dementia in the context of palliative care raises quite different issues. The second is that there is really a need to review guidelines that exist for palliative care, because we do not believe they are relevant to dementia now. Third, we think the notion of palliative advisers which is in the government's new reform package is a promising kind of development. So those are the three things we would like to come back to. First I will ask Ron to say a little bit about the problems he experienced and the answers as he sees them.

Dr Sinclair : My wife died at the age of 63 after spending five years in a residential aged-care facility. It had taken her more than 10 years to get a diagnosis, primarily because she was regarded as being too young. My daughter, who is now 40 years old, has the same genetic mutation as my wife, and she has lived for the last 10 years of her life in fear of dying the way her mother did. My father died at the age of 93, having had dementia for the last eight years of his life. I am currently caring for my mother, who is 86, who is now in the middle stages of dementia. I am on my fourth road. I am currently chairman of Alzheimer's Australia's Consumer Dementia Research Network and I sit on Minister Butler's Minister's Dementia Advisory Group.

During the five years that my wife was in the residential aged-care facility she was the youngest person in that facility by 20 years. When she entered that facility she could not speak, she could not walk and she could not distinguish between us and strangers. For most of the time in that facility she had little or no quality of life and she had a very poor death. Despite there being an advanced directive in place at the time which specified no intervention other than for pain management, staff, including RNs in the facility, ignored the directive and continually tried to treat her, either by calling locums when she developed sickness or whatever, and towards the end of her life they tried to force-feed her and to force her to take fluids. On the other hand, in the last few weeks of her life, we had to fight to get pain management managed well because the staff there did not use any pain management scales. I provided the staff with published literature on end-of-life issues, including pain management issues about the provision of artificial nutrition and hydration, use of antibiotics and so on, and they told me that they had never seen or been told about this sort of information. Some of them accepted it with thanks; others would not even read it. The reasons for trying to keep my wife alive centred primarily on what they called 'their duty of care', although there were religious and philosophical views as well. They were also not given a choice by their management on whether they could opt out of looking after my wife and complying with the 'no interventions' in the advance directives.

So if there are three things that I think that I would have thought might have resulted in my wife having a better death, one was that there should be acceptance that palliative care for a person with dementia does not necessarily mean that that person has to be kept alive for as long as possible. The second is that there is a very high proportion of people who are residents of aged-care facilities who have dementia, but staff training and support for those people need to include—it should be mandatory—things such as artificial nutrition, hydration, antibiotics, pain management, hospitalisation, resuscitation, differences in cultural values and beliefs around dying, advanced care directives and the law. The third thing is a need for facility managements to recognise that some of their staff do not necessarily always share the same beliefs as maybe other people do in their advance directives and that their jobs should not be jeopardised by not wanting to be involved in those sorts of things. Thank you.

Mrs Quirke : My story is probably more a good news story. It is about my father, Jim, who passed away at the age of 82. He was diagnosed with Alzheimer's when he was around 68 years old. There is a very strong family history of this illness. My father was the eldest of 10 children. He now has three surviving siblings—one of them has Alzheimer's and another is showing symptoms of it. His mum had certainly shown signs of Alzheimer's. Out of the 10 children, three of them, who are now deceased, had Alzheimer's.

My father was showing signs of it at least 10 years earlier than 68, which would have put him in the late fifties bracket. It was always his wish to be at home as much as possible, as I am sure is the wish of many, many people. I am an only child, so we moved him in with us some 14 years ago. It was a very, very long journey, especially over the last three to four years.

I am a registered nurse of over 30 years experience. I have specialised in aged care and mental health and I have held various positions in residential and community services, so I have got a good knowledge of what services are available out there. The good news is that we were able to care for Jim at home until he passed away. He passed away with his family, his favourite cat on the bed and his favourite music playing. And he was still there—the person was still very much there. He was very much in control right up until the very last day, refusing food and fluids by demonstrating to us very forcibly that he did not want to be fed. He was mobile until a few hours before his death, and there was no artificial feeding or intrusive medical intervention. More importantly, he was never physically or chemically restrained, which is what I see happening on an almost daily basis in residential aged care.

We had wonderful support from our family GP, who had known Jim for at least the last 14 years of his life. She was also extremely supportive of me. When I would get quite uptight she would say: 'Okay. This was his wish and you are doing a great job. Carry on.' This was not a view that was held by everyone. There were great challenges and there was a lot of criticism from a lot of areas. We were being badgered to place him in residential care by a number of sources, with people saying, 'You shouldn't be doing this; all people with advanced dementia need to go into residential care.' So there was a lot of pressure coming from professional people to place him in residential care. A lot of people held the view, 'But he doesn't know you,' but we did connect with him right up until the end. He gave my friend a great big wink a few hours before he died. He was still smiling. I have some pictures of Jim. This one is of Jim the young man, the sailor, the person my mum fell in love with; this is Jim taken 10 years ago, when he already had his diagnosis; and this is Jim with the favourite cat about a year before he died.

More importantly, we need recognition that dementia is a terminal illness. The trajectory of dementia is very different from that of cancer: it goes for a very, very long time, with highs and lows. We need more in-home specialist support. We need people to understand that people can remain at home with the correct support; families do not need to be pressured into placing a person in residential care. I concur with Ron: specialised training for staff is absolutely vital.

We need improved response times for after-hours services. For example, the night Jim passed away, our general practitioner unfortunately was away. A locum general practitioner took nearly eight hours to come to the home, because it is not seen as important: an elderly person dying is not important in the wider scheme of things. There needs to be improved understanding of pain management amongst health professionals and increased awareness of the support for advanced health directives and the person's end-of-life wishes. Thank you.

Ms Jackman : Thank you for the opportunity to participate and contribute to the inquiry. I have in fact written a fuller summary of the things that I thought were important about our experience which I am happy to table for the inquiry, if that is of any assistance.

CHAIR: Yes, that would be great.

Ms Jackman : For the purpose of this hearing, I will just briefly raise some of the points from it if I may. I looked after my husband, Michael, who was diagnosed with a younger onset dementia in 2001, just over 10 years ago. Michael was a very fit, very healthy man his entire life. He had been a fitness instructor in the British air force before eventually becoming a remedial gymnast working in the rehabilitation of people with disability. He was an elite sportsman with a love of life and family. When Michael was diagnosed in 2001, we had two children still in high school, we had a mortgage and Michael was no longer able to reliably work already. I worked as the full-time breadwinner. We were a single-income family at that point.

The things that perhaps did not go well in our experience were across the whole continuum of care: community services, residential care and in-hospital care. Initially, we supported Michael's progressively changing needs at home, within the family, for the first four to 4½ years after his diagnosis, but by 2006 we needed an increasing range of community respite services to support him in stimulating and enjoyable outings and activities. Our requirement was always that he would be taken out—no sitting at home—and he would participate in active, stimulating things in the outdoors, which he loved. By 2009 we were using five different respite services across the working week. But unfortunately, due to changes in government funding at the time, we lost 2½ days per week of the respite services. In the absence of suitable available services in our area to replace them, we finally had to make the monumentally difficult decision of placing Michael in residential care. Over the subsequent nine months that Michael was in residential care, he deteriorated rapidly with the introduction of antipsychotic medication because he was resistant to personal care assistance. He had three separate lengthy admissions to acute hospital care due to the ineffective assessment and management of a medical condition and also falls he had as a result of pain medication—a pain patch he was given—which resulted in fractured ribs and an inflammatory response in his right leg and right knee.

After this third admission to hospital, I left my job and brought Michael home to care for him full time myself. He had been deemed to be a palliative patient by the hospital after this third admission, with approximately four to six weeks to live. When we brought him home, there were no community palliative care services in our area that were designated specifically for dementia care. But a local community nurse came fortnightly to provide catheter care, and we got essential equipment from the Commonwealth Emergency Respite Service. We had been waiting about seven months for an EACHD package in our area, but there was nothing available. So the Commonwealth Emergency Respite Service came in with everything Michael needed—a hospital bed, an electric hoist, a pressure care mattress and a recliner wheelchair. There was a waiting list of over six months to get ramps put into the house—temporary ramps so we could use a recliner wheelchair to get Michael in and out of the backyard—so I got assistance from the Grey Army. They came within three days, so we could get him out of the house.

There was a palliative care service for cancer in the local area. They took on an advisory role for the community nurse who was coming in for us and to be at the end of the phone if we needed it. We cared for Michael in that state, at home, for five months. He did not die after the first month; in fact, he actually improved. He regained his swallow reflex slowly, he put on weight and he began to be able to engage with his environment and with us again a little.

However, after five months, with the natural deterioration of his condition and with the return of his agitation, we asked for a review of his medication through the local hospital palliative care unit. They were agreeable to admitting him to their unit for one week for this review. However, on admission through the emergency department, he was considered too good for palliative care. He was in excellent condition and we were excellent carers, we were told. Instead, he was admitted by the ED registrar into the acute medical ward. Within two days, he was placed on a significant dose of pain relief medication. He lost his swallow reflex and developed aspiration pneumonia within five days of that admission. In the entire five months he had been at home with us he had never aspirated once and he retained his swallow reflex. He was treated for this aspiration pneumonia and made a recovery. Within a couple of days, he aspirated again and developed pneumonia again. I brought him home and he died two days later.

This was not the experience or journey of dementia that anyone would want to have or that any of us would want for someone we love. Along the whole continuum of care, there are huge gaps in effective and appropriate care for people with this terminal condition. Most of all, the concept of palliation for the person with dementia is just about nonexistent, particularly for the support of what this condition brings in the severe and end stage. For some, it is truly a living nightmare. This is a disease like none other. People with dementia deserve a carefully considered, planned program of care that is responsive to and supports their continuing changing needs and capacities as the condition progresses to finally a death that is reached hopefully with peace and with dignity. What was important to us as a family and to Michael through this experience was for him to be cared for at home with sufficient, appropriately skilled community support services to enable care at home to be realistic and achievable to the very end. An understanding of dementia by everyone involved, including the family, is particularly important especially as to the cognitive changes that come with dementia—which is absolutely essential, I believe. It is imperative to ensure effective and appropriate care for people with this condition. A case manager in place would make the whole process so much easier from the very beginning, someone who is linked in through every stage of the progress of the condition with the family and can help the family interface with the community services that are needed when they are needed and the appropriate services. And too a GP who is involved, who knows the patient or knows the person with dementia and who cares about them and is prepared to be involved through to the end, particularly when a greater medical response is needed with the changes that come at the end. They are the things we consider particularly important for the person going through this whole process and this dreadful condition. In conclusion, I would like to acknowledge my husband, who I think demonstrated to all the people who cared for him immense courage through the whole condition. Thank you very much.

CHAIR: Mr Rees, we have 15 minutes of time left. Do you want to add anything else or are you okay if we go to questions?

Mr Rees : I think we would like you to ask whatever questions you feel you would like to ask.

CHAIR: I think that would be a good idea. Your submission is very extensive and I think that your consumer experiences have rounded that out really well so if we could go to questions that would be appreciated.

Senator MOORE: I have so many questions, Mr Rees. You have actually all said what you think should change. Has anyone got it right? Is there anyone in the world who is doing better than we are?

Mr Rees : I do not think we know enough about international experience to comment on that. I think when we produced our report the other day on consumer reactions to the Productivity Commission report the overwhelming view of Australian people with dementia and carers was that the system is failing them badly and I do not think it would be terribly different anywhere around the world. I think the experience is universal. In many ways Australia, in policy terms over the last decade, has been ahead of the rest of the world. I think we can be proud of that. The trouble is we have got a huge job still to do. So I would be very surprised if there were an awful lot we could learn from overseas but we would be happy to do a bit of a literature search if you would find that helpful.

Senator MOORE: We have a literature search through a particular process on the internet with your international links with the Alzheimer's groups so I was just wondering if you could share anything with us. I have two other issues. For one, Dr Hatherly, you said we should change the guidelines. You have read the department's submission. They put the guidelines as a positive thing that the government is doing. So where should they change?

Dr Hatherly : Thank you for the question. We would probably need to do a bit more work to provide a specific answer to that question. We would be happy to do that.

Senator MOORE: That would be really useful because it goes to a particular thing that you have said. One of the other submissions—and I am sorry but I have forgotten which one as one reads them altogether—made the same comment. We will be asking the department because when you see their proposition you see they actually raise the guidelines as part of a positive process. Guidelines should always evolve. I would really like to know how you think they should change as you have raised that. The other point, before I hand over to Senator Fierravanti-Wells, is the ongoing interest in advanced care directives. I think just about every submission I have read has given dedicated space to these. I know there was work done with the Attorney-General's Department to try and look at the process. What do you think should happen next?

Mr Rees : I suppose we would like the unachievable, which is universal national laws that use the same terminology that consumers can understand and where they do not find a barrier to moving from one state to another. We understood that there was some mutual harmonisation going on. I honestly do not know how extensive that has been. I do not think the issue is just legal; the issue is obviously cultural and attitudinal, because people do not actually do those things early enough. I suppose one of the things that we would really want to face up to in developing guidelines is truth telling and starting the journey at the appropriate time, because that is really what we should be doing more of when we are counselling people about their diagnosis and what their journey will involve. There are some quite good documents around about truth telling and how you approach people in terms of facing up to the realities without being cruel. I think we need to look a lot more at those cultural and attitudinal things as well as the legal things, but the legal things certainly do not help.

Dr Sinclair : In my case, I was unaware that in fact an advance directive was a legal document. If I had known, I could have perhaps taken legal action against the staff who were forcibly going against the directions within that advance directive. People do not know that you can actually charge people with assault if they do not take notice of an advance directive. I think that is an important point. The other issue, of course, is: who knows that there is an advance directive in place? How do you know that? Should there be some form of registration or available place to register such documents? With the electronic health system coming up, perhaps that is where information like that could be lodged.

CHAIR: A lot of the submissions have said that.

Senator MOORE: Yes. Thank you very much. If we could get from you some views about the guidelines, that would be very useful.

Senator FIERRAVANTI-WELLS: My apologies for arriving late.

CHAIR: We got Senator Boyce on the phone and became quorate so we could get started.

Senator FIERRAVANTI-WELLS: Mr Rees, your submission talks about the need for better care in the community. In relation to the last ACAR and the number of packages that were put on offer, we know that there was a demand for 24,000 packages, of which, I think, only 1,700 or thereabouts were allocated. Are you aware how many of those 24,000 requests were related to dementia specific packages?

Mr Rees : No, I am not. I think we can assume the demand far outstrips supply, because we know that the number of high-care packages is around 6,000. Around 60 to 70 per cent of people with dementia are living in the community. Obviously only a proportion of those would have high-care needs, but it would be probably three or four times more than 6,000. Our view as an organisation is that demand for community care far outstrips supply, and that would apply across the range of care from the low-care packages through to end of life requirements.

Senator FIERRAVANTI-WELLS: Regarding the recent announcements that were made about, in effect, the number of packages—and, whilst I acknowledge the increase, they really are only going to meet in 2015-16 the demand that is in place now—have you done any work in relation to anticipated demand? Obviously the number of people requiring care is increasing. At the moment we have 280,000 people with dementia. If we are not able to meet till 2015 the demand that exists today, how do you envisage that we are going to cope with even more?

Mr Rees : We have welcomed the reform package that has come in. We have also publicly said that we think that, if community care is going to be the driver of reform, it needs to grow more quickly than the government are planning for in the current package. We might be making the same mistake now as we have made for the last 25 years, and that is to regard community care as the Cinderella of the community system which does not have enough priority. It follows that we as an organisation—as do COTA, as do Carers Australia, as do the National Aged Care Alliance—like the idea of an entitlement. I could live just as easily with a ratio that is more generous than the one that is currently being planned. I think there will come a point in the next two or three years, and probably before the five-year review that the government are planning on, when whoever is in power is going to have to face up to expanding community care more rapidly than is currently planned.

Senator FIERRAVANTI-WELLS: Mr Rees, there was an issue and Alzheimer's Australia has run the campaign in relation to the termination of dementia as a national priority. I am sure that you are very pleased to have it reinstated, which I commend the government for doing. The termination of that program was an error in the first place. Do you believe that the termination of that program has caused inordinate disruption, particularly as far as dementia sufferers are concerned and in terms of stalling programs in your sector?

Mr Rees : It is always very hard for anybody outside the government to know exactly where dollars are at any given point. That is not a flippant answer; it is very hard. The minister gave us an assurance following the 2011 budget that funding would not be cut. I have seen no sign that any of the programs, training, dementia collaborative research centres and so on have been cut. As far as I know, the funding is all in place. I last saw a figure of about $170 million a year. That is the knowledge I have.

I think good can come out of evil. As far as we are concerned, the big advance in what has happened in the most recent package is that health issues, particularly timely diagnosis and acute care, have been acknowledged as important issues. I would say—and I think this is relevant to your inquiry—that, if you do not get a diagnosis early, you cannot plan. There should possibly be a very strong link between the important work of your committee and the House of Reps committee which is looking at timely diagnosis, because it would be a miracle if you could get good care and good support if you do not have a diagnosis in a health and care system that is already under pressure. That particular development in the package is very important for us.

Senator FIERRAVANTI-WELLS: Ms Jackman, I take you back to your experiences. You talked about case management. If you looked back and you had had case management coupled with much easier access to the particular services that you needed, rather than having it in a packaged form or a more direct 'These are the services that your husband needs: A, B, C and D'—perhaps directly accessible in the form that the Productivity Commission has indicated, under a form of entitlement—apart from making it easier for you, do you think it would have been more cost-effective in the long run?

Ms Jackman : Yes, it certainly would have been easier. I have a background as a health worker. I considered that I was reasonably familiar with the services that were out there. I work in a disability field, so I thought I was going to be able to navigate what was needed when it was needed as well as anyone could, but I found that I was quite unprepared for what came with the condition and the way it manifested. Everyone's experience with dementia, as you are probably aware, is quite different. You cannot predict what is going to happen and when it is going to happen, as you perhaps can a little more with some of the other neurological disabilities. I was constantly feeling on the back foot as to what was needed, when it was needed and how it was going to be needed. If I had had someone who was travelling with me, who was familiar with our experience and the progress of the condition in the way that Michael was experiencing it, they could have navigated what was needed and when—'You go to BrightStar for this sort of equipment,' 'You can get cheaper incontinence pads here,' 'Go for this sort of incontinence pad now, but these are the ones you are going to need later,' 'Do not worry about the home modification and maintenance scheme; go to Grey Army services.' They will not work to Australian standards, but they will get something in the next day for you and they will come and remove it when it is no longer required.

Those things are important, because you are dealing with something that is very complex and very, very demanding with what the person is going through; plus, you are responding to all the normal needs of life, as we have to continue doing. Life goes on. It is incredibly demanding. Having that partner who could travel with you and help you respond to the needs in an efficient, effective way, where the services are, would be wonderful and would certainly save money. I was spending a fortune on incontinence pads. As one microexample, before I found out about BrightStar, I could get them at a quarter of the cost. There were a lot of errors I made, even though I was somewhat familiar with what was out there. Yes, a good, well-coordinated plan, package of care, with someone who can work with you through the whole thing would be wonderful.

Senator FIERRAVANTI-WELLS: Thank you. For the record, Mrs Quirke nodded throughout that whole process.

CHAIR: I have had a lot of questions, but you have answered some of them, particularly the case management issue. I want to go back to the advanced care directives. Many of the submissions called for a standardised national approach, because there are different approaches in each state. Would you think that would be a good idea? I am particularly looking at our consumer representatives. Would you think that was a good idea, that there was a standardised approach across Australia?

Dr Sinclair : Very much so.

Ms Jackman : Absolutely.

Mrs Quirke : Yes.

Mr Rees : We have been advocating for that for probably six or seven years and based very much on consumer views. They just did not know what the terminology was and, in some cases, moving from state to state was becoming very difficult in terms of barriers.

CHAIR: I would have thought that that was one thing the case managers could help with too, Mr Sinclair. So that, when you found yourself in your situation, you would have known who to go to or been able to get some advice about how to make sure they are kept. I have run slightly overtime, but we did start late. Thank you very much. We have given you a little bit of homework around the guidelines.

Senator MOORE: Mr Rees, if I could just put one more thing on notice. It is about the varying situations you find in states generally. You have links with your sister organisations in every state. I think it is ever state now, is it not? It certainly is in Queensland. It would be useful to get something back from the national organisation, maybe through the states, about the variation in circumstances and treatments across the states.

Mr Rees : In terms of types of services?

Senator MOORE: Yes, and your understanding of the palliative care arrangements that your members and their families have had to cope with. It would be very useful for us to get that information.

CHAIR: That is right. It would be. We actually do not need the homework until the end of May.

Senator MOORE: We will be asking as well, but I think there is a difference between people who are working through the system and their responses to getting something from government agencies.

CHAIR: Exactly. We have got our next hearings in the winter breaks. We have got plenty of time for you to complete your homework. Thank you very much for your time. I thank you also for coming in early so that we could hear from you.