'Beyond Bricks and Mortar - Building Quality Clinical Cancer Services' Symposium 2011

Dignity & Distance: A Consumer Perspective on Systems & Processes - Dr Ian Roos

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Chair of Cancer Voices Australia

Download presentation by Dr Ian Roos (PDF 684 KB)

Introduction by Norman Swan:

I mean, these are important issues and I think that one of the advantages of a meeting like this is that there is a network of these regional cancer centres which share similar problems, similar issues, so lots of nods around the room. The question is, is there something that, that come together in terms of the network, which can make it easier between groups and come up with the same message for jurisdictions and others. And it comes back to David’s point also, with that last point about Queensland, if you don’t get primary care involved and integrated into the system the last minute of the treatment process can be the most trivial, compared to the delays earlier on. But you all know that anyway.

My next speaker is Ian Roos. Ian is Chair of Cancer Voices in Victoria and current Chair of Cancer Voices Australia, our leading cancer consumer organisation. He’s also consumer advocate and volunteer with Cancer Connect and he has been very involved in many Government bodies, both local in Victoria and nationally and most recently the consumer framework for engagement in cancer services. Please welcome Ian Roos.

Dr Ian Roos:

Thank you for the opportunity to give a few perspectives on what we, as consumers, would like from processes and systems in a cancer centre and the impact of distance on this. Now. I’m not going to talk about what those processes or systems should be. I’m not a process consultant. I’m not a system designer. I’m someone who went to visit their General Practitioner and found out that I had cancer. Nor am I going to tell you my story. Those of you who were at this conference last year will remember the brilliant story of Isabel Harvey. I can’t compete with that, I’m not even going to try.

There are many sources that have collided in my reflection on this topic. I say collided because not everything fits neatly together, but there are patterns which keep repeating whenever I talk to others who have been affected by cancer. Over the years I have attended a number of forums, workshops and conferences, where others like myself have expressed their views. There have been a number of formal projects that have consulted people, like the CanNET Victoria consultation, where 200 people were asked to tell the stories of their cancer journey; the Public Private Pathways project of the North Eastern Metropolitan Integrated Cancer Service. There is literature on this topic and people have made me aware of this and I have asked a number of people in regional areas about this. But essentially, you are going to get a personal perspective.

What we are looking for is delivery of cancer care to obtain improved outcomes, not only for those with cancer but also for their families and their carers, volunteers and staff of the centres. We are looking at redistribution, to share things in a different way. This lies behind the national framework for consumer involvement in cancer control that Norman mentioned. What are the intangibles to ensure that the way a centre operates will be a partnership between professional staff, volunteers and those affected by cancer. I mention volunteers because increasingly we do have to tap into the goodwill of the community and creatively use volunteers. On a Monday, if you travel east from here, you will come across a little tourist steam railway and you will find me there with a white flag, waving trains off as the fat controller. We have 850 volunteers and we use a volunteer management system which was developed for Canadian hospitals. If others can creatively use volunteers, so can we.

I had hoped that the national framework for consumer involvement would have been available for you at this meeting, unfortunately printers don’t always deliver when we hope. But this was a partnership between Cancer Voices Australia and Cancer Australia and it involves some very good research based on interviews with over 40 organisations and a Delphi survey of over 200 consumers. It addressed both individual and organisational imperatives and it identified four key elements. Organisational commitment – the organisation has to be committed to meaningful consumer engagement, in practices, processes and systems. Capable consumers – consumers who are supported, trained, selected for their capability to meaningfully engage with the system and talk on behalf of other people, not themselves. Inclusive groups – effective consumer engagement incurs in groups and teams and therefore that’s where we have to put a lot of focus. And a shared focus that consumers and professionals working together will have mutually beneficial outcomes.

Our framework is, however, what we hope will act to develop shared systems and process to improve outcomes. As consumers we hope that any processes and systems will provide us with dignity; that we will obtain the necessary information which is relevant to us as individuals and in the most appropriate fashion; that we will have supportive care before, during and after treatment, regardless of the outcomes and that that will be extended to our families and carers. Finally, that those transitions that David Currow mentioned will be managed and handled well and that we will not be left hanging. The tyranny of distance, of course, impacts all of these and acts to exacerbate the situation.

I was being wheeled into theatre, I was on the receiving end of an epidural with my legs up in stirrups, about to have long needles inserted into my perineum, guided by a rectal ultrasound probe. Not the most dignified position. I commented something about this, to the orderly, as they were wheeling me in, who said, ‘Ah, dignity, it’s a nice concept’. Nevertheless, during that treatment I was treated with dignity and respect. I was included in conversations, I wasn’t just a slab on the table, the anaesthetist kept talking to me, the oncologist told me what she was doing at every stage, the theatre nurse kept up a running commentary, I was informed, treated as intelligent, reassured and given respect. Dignity is about being treated with honour and respect. It’s not about being liked or disliked, it’s about being treated as a responsible human being. It is also about modesty and about preserving people’s modesty. Yes, we do have to undergo procedures that challenge our modesty but there are ways of treating us appropriately. It’s about being treated as a person. I might be wearing a bracelet with a bar code on it, but I’m not that bar code – I’m that person. I’m also an intelligent human being, I didn’t have a lobotomy when I walked into the centre. I don’t have to be treated as a child. I can make my own decisions and have the right to do so. Be careful how and when you use my name.
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There are times when it’s appropriate to use my given name, if I’ve given you permission to be that familiar, but formal and public situations require more formality and please respect my privacy. One of the most horrific situations I saw was in a waiting room, where a person was standing there in a backless gown and somebody came out and said, ‘Mr Jones, you’ve got cancer, you’re booked for surgery on Thursday’. And how many of these new centres we’re building have large waiting rooms? There is a view that large waiting room signifies failure. We have failed to manage our professionals time and we do not show respect for the value of the patient and carers’ time. Why have people travelled three hours for a 15 minute consultation, then expect them to wait around for another two hours for them to be seen?

There is little dignity and respect when we insist on backless gowns. The sight of an elderly lady in the middle of an Emergency Ward, standing there in a backless gown that doesn’t go anywhere near covering her ample figure is not treating her with respect and honour. If there is anything that indicates we do not treat patients and dignity, it is putting elderly people into mixed gender wards. They’re a convenience of the system. Just think of your mother, or aunt, or sister – how would they like it. So why do we do it?

Some years ago I took my adult son, who suffers from chronic neuropathic pain, into emergency at a hospital that has the words Compassion Justice Dignity and Excellence set in bronze in the paving as you walk into the Emergency Room. There was no compassion, justice, dignity or excellence in the way he was treated. He was in pain and needed to be admitted but he was treated as if he was a drug addict, faking a need for opiates and I was aiding and abetting that. I thought this was an isolated case, but when I was in a country regional centre and we had an introduction session with a group of patients, it suddenly became an issue centre of the way that cancer patients in pain and palliative care patients in pain were treated in that local emergency centre. When I asked our regional representatives, I received a response from one of them about the times we offer services and people who are struggling to work whilst they receive treatment. She made the point that in hospitality you wouldn’t do this, you wouldn’t say to people “Oh, you’ve got to leave work and come before 5 o’clock if you want dinner”. The timing of appointments – for rural people, consideration does need to be given to the added stress - emotional, physical and financial - that accompanies long travelling times. As mentioned, you travel for four hours and then you have to wait around for two or three hours and that can make an eleven hour day for people.

When we set out to treat everybody exactly the same, in reality we discriminate against people who aren’t exactly the same. We need to take into account individual circumstances and unless people’s individual needs are taken into account, we’re not treating them with dignity. Twice I have been under pressure to consent to an inappropriate and irreversible procedure on my way into theatre. One was rather appalling, it was 11 o’clock at night, I had been booked for theatre at 2pm, I had been on nil by mouth since 8am. The other was when I refused to sign a consent form for a procedure which I knew was wrong. Now if that can happen to me, who is well educated, articulate, forthright and knowledgeable, it also happens to other people.

Sometimes I wonder if there is no end to the different booklets, pamphlets and guides produced about cancer in general and specific cancers in particular. It is very easy to get information overload. Face to face information, however, is highly valued. Having someone sit down with you and tell you what and why and how, to have a two way conversation, is of immense help. Doesn’t have to be a time poor consultant, doesn’t have to be an over-stretched nurse, it can be a trained volunteer who has been through the experience. This happens with Cancer Connect. It happens in the breast cancer area of some hospitals – there is a trial at a major Melbourne hospital with prostate cancer for this very thing. My own General Surgeon was brilliant in this way. At the start of each consultation he would put notes onto a sheet of paper, with an anatomical diagram on it. During the consultation he would circle bits, he’d put arrows there, he’d make notes, he’d put things there and at the end of the consultation he’d give it to me to take home to think about. He’d tell me, when I next see you, bring it with you and what questions you will have.

Recently I was at a training workshop and an elderly lady – now elderly is relative, what it means is she was a little bit older than me – told me that her specialist had taped the consultation and when he told her she had cancer and what the most appropriate treatment would be. He gave her the tape and her comment was, "I have played that tape at least ten times. It was good to be able to listen to it over and over again". We need interaction when it comes to getting information, because we don’t know what we don’t know. Remember Donald Rumsfeldt – “there are no unknowns, there are known unknowns, but there are unknown unknowns”.

So when it comes to information, be personal – nothing beats the face to face. Listen to the family and carers, they have needs. In one of the CanNET Victoria studies we would often come across the situation where a patient would say – “No, we’re fine, no problems”. Soon as the patient was out of the way, the carer would say “Look, I’m at the end of my tether, I’m not coping, I need help”. Give people something to take away. Use good quality, evidence based information and trickle it out, don’t flood it. I was impressed at a conference in Lyons, where the French were talking about their patient information for breast cancer and they had four pieces of information. One, an overview; one, for before they went for surgery; one for before they went for radiotherapy and one for before they went for chemotherapy. They didn’t overload them with everything at the beginning. And internet...in your patient information area, and I assume you have one, why not have internet linked computer terminals with portals which direct to quality evidence based sites. Why not go further and have some trained volunteers to assist people to direct them to good websites and help them discriminate good from bad. Knowledge is power and we should assist people to have knowledge when they want it.

One of the priority areas these days is supportive care. Supportive care screening is receiving a lot of attention, but supportive care screening at the beginning of our journey is only part of the issue. We need someone who will work with us to ensure that things happen, that our care is co-ordinated, that takes into account the impact of cancer on our financial, emotional, employment and family situations. Will someone tell us that it’s OK to see a psychologist or a counsellor? I know I left it too long. Who is going to tell us where we can access supportive care services and how to deal with Centrelink? Is there a role for volunteers here? Can more use be made of existing services such as the Cancer Help Line and Cancer Connect to provide a road map. Supportive care screening is wonderful, I’m all in favour of it, but it is a bit like checking that I can drive and the car is OK before I set off.

When I’m driving out there and I come across this sign, what do I do? Turning back is not an option. In the CanNET Victoria studies, the challenges facing patients and their carers were an order of priority up there. Travel, including parking, was number one. The financial impact of cancer is an enormous stressor, the cost of treatment, needing to pay up front, impacts of the loss of income. In a regional area if you’re a small business person and a member of your family gets cancer, you are likely to go out of business. Isabel didn’t tell the story of the family business last year, but Keith Harvey had to shut up a business in Echuca and a business in Kyabram and sack 40 people. What’s the use of a patient assisted transport scheme if it takes 16 weeks to get a reimbursement? One of the people interviewed in the Victorian CanNET study described her family’s cancer experience as a chase pyramid. First there was the discovery chase, what am I going to do now, how can I get through this, where do I start and where do I go. That was followed by the money chase – how am I going to afford all of this, is this a pay up front bill or can I just pay the gap? Why is the cost different at each service I use. The treatment chase – how do I arrange my appointments to fit in with my travel arrangements? Why is it so hard to find what I need to in hospitals? Where do I find accommodation when I need it?

Then the paper chase – how do I find out information? How can I ensure that my health information is at each service I use and how do I sift through the information I get?

The help chase – where do I go to find help and eventually when I’ve got to the top of the pyramid, can I survive, will I get through all this? This reminds me a little bit of Maslow’s Hierarchy of Needs. The lower levels, the physiological and security needs – not much use addressing the higher levels if you don’t address those lower levels. Unfortunately a lot of the discussion about supportive and psychosocial care is aimed at the top of the pyramid, not at the bottom. We don’t consider too often the stress that is actually caused by the cancer diagnosis and the financial impact. And of course, distance impacts dramatically on these. I have often said, when we use the term psychosocial care, if we focused on the social, we would not be needing the psychological nearly as much. And of course, we’ve started on a journey, we’ve arrived somewhere and we’re not sure where. We’re a long way from the places we used to know and we have to continue on this road in rather strange territory.
After a long time of avoiding it, I finally made an appointment with a psychologist. She sat and listened to me, asked some questions, made another appointment and during those times we talked about my cancer journey, my family, the impact on things and how to deal with the monster in the room, the shadow that kept trying to break out and overwhelm me as I frantically tried to nail more planks across a bulging doorway. At one of these meetings, she quietly commented, “You don’t have depression, you have a lot to deal with and you’re in a time of transition. Times of transition are always uncomfortable. Let’s see if we can break that monster up into smaller pieces and deal with them one by one”.

Transitions are the ending of one thing and the beginning of another. Finishing radiotherapy and starting chemotherapy, finishing treatment and moving to the follow up phase, finishing the follow up phase and then going out with no more links with the treatment centre, or no more treatment and into palliative care. Transitions should be well managed and we shouldn’t be left hanging. They aren’t just the big one when treatment finishes.

At the start of treatment, is quite a confronting one. One New South Wales hospital has volunteers in the waiting room who provide cups of tea and biscuits to new patients and sit and chat with them to ease the transition into being a cancer patient. You build up relationships during an extended phase such as radiotherapy and suddenly you walk out and you’ve got to build up new relationships in chemotherapy. You’re just expected to move onto the next phase. We need to be given permission to celebrate the ends of phases of treatment and maybe share this with staff, for example at the end of chemotherapy. There are stages on the journey that signify the next phase to begin, so that we feel we are on a main road, not wandering off down some side road.

In his analysis of patient narratives, the sociologist and cancer survivor Arthur Frank described three types of narratives: Restitution – I was healthy, I am now sick, but I will be healthy again; Chaos – things are out of control, I can never see them getting better again; and Quest – I’ve incorporated what happened to me and I’m now getting on with my new life. For cancer patients, restitution is not our experience. To quote the former Test cricketer, Simon O’Donnell, 20 years after his cancer treatment – saying you actually live with it every day, even if you survive it, you still live with it everyday and that I think is the true life sentence of cancer. But the medical model is predicated on restitution. Many of the stories we hear are chaos stories. What we need is help to make that transition from chaos to quest.

I would like to finish off with this quote from Susan Sontag – Metaphor as Illness. “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. “

The metaphor of passports and citizenships is a powerful one. We identify ourselves as citizens of a country, we carry that passport of that country around with us. Before cancer, we were citizens of the kingdom of the well. We may have occasionally have travelled in the kingdom of the sick but we were there on a visa. Our passports were stamped at border control with the expected length of time we would be there. Sometimes that stay was extended but we always returned to the country of our citizenship. But we are no longer citizens of the land of the well, occasionally visiting the land of the sick. We are now citizens of the land of the ill. We may travel in the land of the well, but it is on the passport of the kingdom of the sick. We travel back to our country, we visit the town of regular check up and if it’s a good visit we can travel back to the land of the well on a visa that says ‘next time’. If it is not a good visit, we travel onto the town of more tests, to the city of further treatment and perhaps the shire of rehabilitation. After cancer, our culture, language, myths and legends have changed. The people we meet and associate with are more likely to be fellow citizens who have had that experience. We lose contact with those that we once had contact with when we were well. We now belong in that other kingdom and somehow the processes and systems of your cancer centres have to prepare us for that.

Thank you.
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Norman Swan:

Thanks Ian. If I could remind you to come up to one of these microphones to make a comment or ask a question. Yes, you want to ask....

Question (Chris Hamilton):

Chris Hamilton, Olivia Newton John Cancer Centre in the Austin, in embryonic form, I’d have to say. Quick straw poll – who knows clinicians in Australia today that are regularly audio-taping consults, be they doctors, nurses, whatever? Hand up...high... Who knows whether a CD costs more than 50c? Who knows of any credible medicolegal impediments to regular consultation and handing out a CD of patients? In 2011, in my view, there is no excuse for clinicians not CD-ing consults and offering that CD. The evidence has been there for ten years, I spent 15 years not doing it because Martin Tedersel and Jeff had annoyed me and I thought it was a waste of time, but it isn’t. We should absolutely be doing it. So the technology is there, I’ve been doing it for three years and it’s very, very valuable and eases the journey, I would absolutely agree with our speaker.
Thanks, a comment on that.

Dr Ian Roos:

Look, I totally agree, it’s not an expensive process, not an expensive process to do as my surgeon did, write on a sheet of A4 paper with things. And I’d agree, there’s no medicolegal reason why it shouldn’t be done.

Norman Swan:

Just for those people in the room who are not doing it – what’s the technology used? Do you just use the microphone and computer and straight onto the CD.

Question (Chris Hamilton):

You have an audiotape on which you do your letters, or you have an iPhone. You have a cheap MP3 production, you burn it to CD using freeware and you post it to the patient. You ask the patient do you want it, you identify yourself, you identify the date, the UR Number, easy as falling off a log.

Norman Swan:

Put it up on iTunes even?

Question (Chris Hamilton):

Absolutely.

Norman Swan:

Tell us a little bit more, because a lot of people in the room are from regional cancer centres, who are just getting going and we talked a little about it last year, but the consumer framework and how that can help people engage consumers, which will modulate just some of their planning around some of the things you are pleading for.

Dr Ian Roos:

As I said, we developed the consumer framework, we identified and I wish that we’d had copies here for you – we identified those four elements, the organisational elements, the organisation has to be committed to involving consumers. If there’s not that commitment, you’re not going to get far. But also within the working groups where consumers are involved within the organisation, there has to be a commitment that people will be treated equally, the same opportunities for professional development will be offered to them and so on.

But equally well, there’s an onus on consumers. To make sure that they are representing other people, not themselves, to have mechanisms whereby they can access the information from other people and the views of other people, to be willing to undergo training and professional development and be willing to understand the context in which they are operating.

And then there’s that fourth element of a shared focus, common throughout, to achieve outcomes and to want to make this thing work. And so they are the four elements, but we’ve also put down at an organisational level, what are the requirements for different types of involvement. Whether it is just being kept informed, whether it is being consulted, up to whether it is being seen as an expert and a partner. So they are there and it is an excellent guide. It’s not a how to guide, it’s not a tick the box to show that you’ve done it. It is a framework which you can hang things on to get things to work.

Norman Swan:

There are people in this room thinking, this is just a big waste of time, to be ideologically sound and tick the box. What tangible benefits are there, if any.

Dr Ian Roos:

Yes, there are going to be situations where people just want to tick a box, I have got to have a consumer involved, that’s it. That’s short changing yourself, actually, because consumers have enormous skills not only from the experience of the illness, which nobody else can share, but also from the other skills which they bring from their lifetime experience and their own professional experience. To not make use of those is really short changing yourselves.

Norman Swan:

That’s fine you say that, give me a tangible example of where consumers have made a difference to a cancer service, where it counts. Better care, better transition through the system, things that matter, things that everybody in this room is struggling with where they might think it’s just another committee I’ve got to deal with, dealing with consumers and not getting on with business. Tell me of examples where the business has been improved.

Dr Ian Roos:

I could give you a number of examples. Let me give you one in Victoria from the breast cancer field. That was the access of breast cancer prostheses, moving it out of just other aids and equipment type stuff, into a one stop shop where people could go to and get their applications dealt with, it made the system much simpler to administer and it made it much better for consumers. Or I could give you another example from the breast cancer area, the influence of consumers on the single node trial. How much better the trial was.

Norman Swan:

Is that the sentinel node biopsy?

Dr Ian Roos:

Within the processes and systems, understanding the impact of diagnosis on cancer, on flow through, Chris talked about the Olivia Newton John Centre and the impact of consumers. Let me give you a really good example that in the radiotherapy area, every toilet cubicle is now going to have a wash hand basin in the cubicle. Not out there, but actually in where the pan is. People need to be able to wash themselves in private and treat prostheses and these sort of things as a result of that. That came directly from consumer involvement in the design of that process.

Question (Thomas Kron):

Thomas Kron, I’m a radiation physicist at Peter MacCallum Cancer Centre. I should sort of also highlight that consumers encourage researchers and encourage professionals and the example is the ACDS, the Clinical Dosimetry Service. Without the encouragement of a consumer, and I think John is here, who has sort of followed that long struggle through to get that centre, we would not be where we are now. So it is freely in many, many different aspects where consumers interact with the health services. Sometimes in rather unfamiliar and highly technology based things. More about the ACDS tomorrow.

Norman Swan:

Thanks Thomas and thanks Ian. Please thank Ian for us. That was great.

A copy of the National framework for consumer involvement in cancer control can be found at: http://www.canceraustralia.gov.au/about-us/news-and-notices/national-framework-consumer-involvement-cancer-control-released

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