Walking in the shoes of others

Haven't posted for awhile, busy pushing health literacy in my workplace, in the community, even in Kyabram. Kyabram? It's a smalll town in the North of Victoria (which is a large state at the bottom of Australia). Kyabram and it's district towns were beginning to experience some nasty flooding on the day I visited. Just a few days later the nearby town of Numurkah had to replace its hospital with tents. I was there talking health literacy to health professionals and I did wonder in the days that followed what the "information" response would be to people managing inundation and evacuation. Many folk refused to leave their homes for reasons I can well understand; why leave when there is still work to be done? But even now, what information are people getting about the process of recovery, avoiding illness, mental health, survivial.
Dr Rima Rudd told me a story once about the Len and Ceci Doak and their "first response" efforts after Hurricane Katrina in New Orleans. A tree of health literacy "experts" were at the ready to volunteer their efforts to make information that would reach communities in need, survival information, accessible information.

I really like that idea.
Next time I'll post on our forum - In their shoes.

Health literacy and palliative care

Today I spoke to palliative care workers from across Victoria and this is the story I told.

As palliative care workers – and associated professionals, I’m sure that everyone wants to tell you their death and dying stories. So today I’m going to tell you mine and hopefully illustrate the role of health literacy in my family’s confrontation with the process of dying.

A decade ago my Dad was diagnosed with mesothelioma and died nine months later, he was 64. I recall that I often, quite accidently, referred to his palliative care worker as “the midwife”. I would ask mum, what time is the midwife coming, or dad, what did the midwife say? I didn’t think about it too much at the time, but in retrospect it occurs to me that midwives and palliative care professionals play very similar roles, guiding people through the big transitions – through pregnancy and birth on the one hand and death and dying on the other. One of the big differences between these two transitions, apart from the obvious - the potential joy inspired by the one event and the terrible sadness associated with the other - is the openness of communication and the flow of information.

There is so much information for women who are pregnant. There is a general hubbub of talk and chatter and gossip; there are endless books and brochures and web sites. There are telephone apps that tell you what your baby looks like week by week; there are bulletin boards, blogs and bibles – telling you how to manage from one stage to the next. Indeed, it’s probably fair to say that pregnant women - particularly white, middle class, Australian pregnant women - are subject information pollution. A plethora of opinion, comments, judgements and urban myth – from every which way; health professionals, family, friends and perfect strangers.

Dying on the other hand is the elephant in the room – in dying there is a silence of information and in that silence there often breeds great confusion, misunderstanding and misery. I am not suggesting that the information isn’t available, or that the books and brochures don’t exist, but it doesn’t flow with the same ease. I’m suggesting that the barriers to information that are everywhere across health and healthcare – barriers brought about by the many social determinants I mentioned earlier - are even more impenetrable when you add the reverence and fear and the cultural silence engendered by the process of dying.

My family is a typically dysfunctional Irish-Catholic brood of seven and each of us had our own strong reaction, opinion and understanding of my Dad’s condition and what it meant. My mother told us that dad was diagnosed with something called “miso something-or-other theloma” and it was lung cancer but it was only in his right shoulder. At one point she even threw in that it usually only affects tall people. We had no idea he had worked with asbestos, he did and he had also wondered over the years if it would eventually catch up with him.

Mum told us he would be able to live with “his condition” for years and that treating it would just make it spread and grow. The reality of course was that his prognosis was poor and treatment was just plain useless. My mum simply interpreted everything the doctors told them according to how she wanted things to be and God help us if we were to question it or suggest otherwise.

Dad said nothing. I think he knew he didn’t have long and was resigned to just quietly coming to terms with it and managing his death as best as he possible could. Deep down, Mum probably knew the reality too, but she nevertheless fully expected dad to continue unaffected, and despite the increasing doses of morphine, she would get frustrated because he forgot to pay bills or the put the bins out or water the garden.

Then there were the siblings; one brother tried to pack Dad off to Perth to participate in trials for a new treatment, a sister decided that the medical profession were lying to us and contacted them all to tell them so, another brother thought he could be treated with breathing exercises and another wanted to delay introducing oxygen because that was “giving in to the disease”. All of us fought over what was best at any given time. We wanted Dad to die at home but he (unsurprisingly) wanted to go to hospital. In his final hours, in a tiny hospital in South Australia, while my brothers drank themselves silly in the car park – Dad was still trying to manage his dying in his own way. His level of discomfort was so great that we asked the staff to increase his morphine but Dad, in his delirious state, said no, no more because he didn’t want his death to be . . . induced.

There was a whole other level of complexity because Dad was entitled to compensation but his case had to be heard while he was still alive. He was determined to do everything he could to make sure that Mum would be paid out before he died and so there were legal documents piled on top of medical forms and prescriptions, bills, appointment slips and instructions for a whole range of medical paraphernalia. We were all learning a whole new language that we had to master in a short time.

I thought Dad’s “midwife” was wonderful given what she had to deal with but nevertheless there are things that may have made our journey and therefore Dad’s journey a little easier. While grief was the overriding factor impacting our ability to function normally, each of us also brought different understandings within the different health literacy domains – and of course none of us was really willing to listen to the other and so really, it just got ugly.

What would have helped us? At the time I couldn't have told you, but in retrospect and with the benefit of hindsight and ten years of working in consumer health information, and the my recent whirlwind tour of the world this is what I can tell you:

• · Good, accessible, timely information about the disease delivered by a health professional to all of us. Information on what to expect, the prognosis, what the current treatments are and when treatment is actually useful. Information about the progression of the disease and how the dying is managed, when oxygen is introduced, the affects of morphine and how that can be managed etc., etc.
• · Good quality, interactive information online – maybe even the capacity to talk with other sufferers or families and facilitated by health professionals. My dad spent a lot of time on the internet searching for information and getting frustrated (a decade ago remember)
• · Information for all of us, family, partners, children and friends on how to support the dying and how to talk about dying, how to acknowledge the elephant in the room and its impact on everyone.
• · Information that is bite sized, accessible, easy to manage, with short, active sentences and limited medical language that can be read and shared with others. Information that refers to and directs readers to the evidence; to more complex information for those who need to go there.
• · Information about what is available in the community for the patient, for the family, as well as easy, accessible pathways to support and care.
• · Structured, inclusive, support sessions where all of the above takes place.

patient satisfaction unsatisfying

Patient satisfaction surveys provide a way for patients to feedback on the quality of a hospital service. They are very influential because we take them very seriously.

Last week I was working with a group of young women who are experimenting with walking tours to assess the health literacy environment of a hospital. We are using tools developed by Dr Rima Rudd at Harvard university. The young women are in years 10 and 11, so anywhere between 15 and 17 and we had lots of discussion about how to use the tools and what we might learn about the hospital environment. The idea is that they will ask a friend, who has never been to the hospital, to come on the walking tour and to find their way from point A to point B. All the friend will comment on the decisions they make, why they choose one way over another and how easy or hard the signage is to use. The young women found the idea a little difficult, and as earnest young women, were concerned also about getting it right. So we decided to do a dry run - I would be the observer and the tourist/patient would be one of the young women, who just happened to be a relatively newly-arrived Muslim, African woman, quietly spoken with a reasonably strong accent and a little shy (though scarily astute and confident in her discussion afterwards). So we asked her to find her way from the emergency lobby to the pregnancy clinics. She found her way first to the front information desk - choosing people over signage to find her way around and to elicit information. She asked the lovely woman at the front desk "where do I go to for a pregnancy clinic?". Unsure what she had said the woman asked "you want to go to Women's Clinics?" To which our 'patient' answered "yes". So off we all went, to Women's clinics - which is where women go for appointments for everything but pregnancy.

When we arrive, we hang back while our 'patient' goes into the waiting and check in area. She comes back out again within seconds because she is not sure if she is supposed to just sit and wait, or if she is supposed to go to the counter. I go in and I can see her problem - and I can see she is not the first to have had it because the desk staff have tried to rectify the confusion by creating their own signage on bits of paper stuck with tape to the barrier that keeps everyone from naturally approaching the desk.

Our patient approaches the desk and we watch from a distance. Our patient asks "is this where I come for a pregnancy clinic" and the woman behind the desk stands and says in a tone that can only be described as grumpy, rude and ever so impatient "No, pregnancy clinic is over there!" I'm a little shocked. To be honest, I have never seen our desk staff behave like that - indeed I'm always quite impressed by their patience and courtesy. I'm not sure I could maintain it over such a long day. It's possible too that it was a bad moment, a bad day and I think we're all entitled to them - but the interesting thing is what happened next. When our "patient" came back I asked her how that made her feel. Expecting of course that she would say how awful it was, or how the person behind the desk made her feel small, bad, stupid etc etc. What she said was "that was OK, she was just a bit busy." Our patient was completely unaffected by that interaction and I suspect the reason she was unaffected by it was because that's what she is accustomed to.

So, if our patient was asked to complete a patient satisfaction survey - what would she write in answer to the question "were the staff courteous?" She would answer "yes", and we would never know or be driven to work with our desk staff about how to address young African women who don't necessarily have the right information about where they should be going!

Bringing home the learning

It takes awhile to process a journey like the one I just had. And the processing is constant - every day the penny drops and then it drops again. For a moment I'm certain I have all the answers and then I have another epiphany. I've written so much about how we could apply some of the things that I have learnt - and I do keep coming back to the same themes (which I will talk about a bit later). But it's not so much about the interventions and strategies that we could adopt, it's how to make them fit, to slip smoothly into the many other pressing priorities of a major hospital - this is the challenge.

While I was travelling, my focus was really about how to build the health literacy of a hospital. Especially one that isn't necessarily central to its geographical community. The big hospitals that have patients across a city, or a state. Hospitals that specialise in a population (women, children) or a set of diseases (cancer); hospitals that are "leaders" or "advocates" but not necessarily strongly linked with their local library, adult education provider or language centre. I set out to learn about how I could support my organisation to become more health literate in a way that was sustainable and useful and aligned to the business, reputation and standing of the hospital in the broader community.

So after two months of mulling it over, what are the key themes that I keep returning to? Collaboration, partnerships, capacity building in staff (training and access to information about health literacy) and good patient engagement. My view is that once all of that is working and working well, then good patient "information" and communication will follow. And whether you are a hospital in a tiny rural community or a major teaching hospital with a statewide focus the models for engagement and communication should be evaluated and written up to be adapted and replicated anywhere.

we are currently piloting an engagement project with young women - to inform our work on health literacy barriers for that population.

More on that later.

Heading home

Flying home last week, via an unexpected and unwelcome detour to Sydney, I started to wonder how I might go about communicating the massive amount of information I have gathered. Health literacy is a poorly conceived notion in many ways. There are many definitions - all involving abilities and capacities to access, understand, communicate, use and evaluate health information. But the jury is very much out on what it is about health that is so tricky to access, understand, communicate, use and evaluate. Why is it that some people are able to manage relatively well? Is it cognitive ability, education levels, socio-economic status - empowerment, confidence? Or is it an increasingly complex health care system, together with an increase in chronic disease and the necessity for people to manage their own health. Is it a bit of all of those things? At the Health Literacy UK conference that I attended in Manchester, Don Nutbeam (health literacy guru in the UK) pointed out that the broader notion of literacy has struggled for a theory and measurement for many decades. So we needn't panic. The debate will continue and theories and measurements will come and go but in the meantime we need to apply what we do know and in doing so we need to feed the development of those theories and measurements.

So how do we act? What do we put in place to cover all possible reasons for why health literacy might be an issue. Actually, there are some very good starting points - the Calgary Charter, the American National Action Plan, the plain language movement (yes, I know, It's a start but not enough). Rima Rudd's work on health literate environments and the many, many interventions that encourage better communication from health professionals and better access for people who, for whatever reason, have been disconnected from health. As health professionals we do have a role to encourage what Christina Zarcadoolis refers to as generative health literacy - applying information to new or novel situations. And that requires a new understanding of how we all work as patients. How, as patients, we access, understand, use, communicate and evaluate information. And that's hard, because we all do it differently. It's hard but necessary.

Leeds - Wakefield - Yorkshire

Some great work going on at the University of Leeds. Particularly interested in some research with a critical health literacy bent. One study looking at the links between health literacy and women's decision making about pain relief during childbirth and another study about women, diet and exercise. Researchers here are also looking into diabetes, self management and some really interesting work on the information that comes with the various medical devices that people need to self manage. The findings, rather unsurprisingly found that the misuse of such devices can lead to incorrect readings. Really? (Said with irony!) And what are the consequences of having incorrect readings of your blood sugars and insulin? The European Union requires that information provided to patients passes a usability test but this kind of information slips through some kind of loop hole and is consequently excluded. Crazy.

In Wakefield I met with Sam who has led a health literacy program in the local Primary Care Partnership over the last three or so years. Wakefield and its five towns - are nestled between between Leeds and Sheffield and the population is almost as stable as the beautiful old cathedral that sits in the the town's centre (above). But towns like these bear the brunt of economic crisis and consequently there is a lot of disadvantage. Indeed the town has probably been beset by social issues long before us city dwellers ever used the words economic and crisis side by side in a sentence. Sam comes at health literacy through adult education and, in her pre-Trust life, her job was to develop info and resources for adults to develop skills using their interest in, say, football. Again it is this approach to adult learning which manages to move away from the "threat" of learning - and learning is a threat if you have been disempowered by the experience of education - and instead finds common ground that the adult learner can engage with. Sam's passion has lead to the establishment of the "Barge project". The idea dawned on her one day when she realised that the canals ran through the backyards of some of the most disadvantaged communities. The project has developed its own legs over time and successfully takes out groups of locals; distracts them with the driving of the boat and the sheer novelty of being out and about - a holiday at home for people who just don't holiday - and whether they know it or not these people are developing their health literacy. How? Through cooking on the boat, using a knife, cutting a vegetable, talking about stuff, sharing information. Rules around smoking and using electronic gadgets have the affect of making people realise the benefits of being busy and distracted. Strong community development work - not necessarily stuff that can be taken to my workplace, well not beyond what I have been already gathering on the best ways to engage and to pass on information to people and to create environments that encourage generative health literacy. But certainly this illustrates the obvious benefits of such an approach.

Turku - Finland

In the old Finnish capital of Turku, remnants of its former glory are tucked amongst many less elegant structures from the latter half of the last century. There are big cobblestone squares and buildings that have stood for so long they slouch. But there are also big soulless concrete blocks lining the city’s centre; functional, living spaces, businesses etc. But I saw very little of it really, beyond the well worn path from my hotel to the conference centre and the never-dark view from my window. And Turku needs time I think.

I was there for the International Health Promoting Hospitals Conference where a surprising number of doctors and senior hospital administrators, as well as a handful of academics and health promotion practitioners have gathered to nut out the role of the hospitals in promoting health as well as treating illness. The theme of the conference was salutogenesis – which, as I understand it, is a shift of focus from the risks of ill health to the resources for health. So rather than research what makes people take up smoking, consider what it is about the people who never take it up, or drives people to give it up. That’s it in a nutshell. Indeed it is rather similar to the way that Christina Zarcadoolis talks about health literacy. Let’s not focus on what is wrong with people – let’s find what is right about them and build our efforts to communicate around that.

At this conference, I was struck by how many of the health professionals, particularly the clinicians, had developed their interest in health promotion. It really was like a bolt from the blue, like they had suddenly started listening to their patients and realised that there was something wrong with the way that healthcare was being delivered. The classic “aha” moment, where the pieces all fall into place .

Some quotes . . .

“what is the point of treating these people over and over again without addressing the issues that are making them sick in the first place.”

“Health is no longer a thing of its own. It is connected and takes a part in shaping society”.

“The health care system has made massive gains in keeping people alive but not increasing healthy life years”.

It all makes sense – now for the mechanisms.