Whatever it takes

Whatever it takes
I’ve been reading about the L’Hopital General, a very old building in the small city of Uzes where we stayed a few nights ago, on our cycling tour around Provence. It was established in 1214 as a ‘hospital for the poor, thanks to a generous donation’. Most of its functions were convalescence, a place to die quietly, or isolation when infectious disease was about. In 1720, almost all of its patients and staff were killed by the plague, so no-one went near the place for decades.

The story set me thinking about my own brief foray into a modern attempt to keep people out of hospital, unless they really needed to be there. I was the first and only CEO of the Advanced Community Care Association, begun in 2003 and voluntarily wound up by administrators in 2006. During 2002, our enthusiastic Minister of Health had announced a “Generational Review’, a ‘root and branch analysis’ of the health system in South Australia. I was brought in as one of a number of senior people who would hold consultations, sift the evidence and write position papers on how services could and should change. Unfortunately, it degenerated into a very expensive talk-fest followed by fiddling with the organisation charts, none of which actually promised to give anyone a better health outcome. Within a few months I was desperate for a real job, somewhere I could improve the experience and survival chances of actual people dealing with serious health issues.

An old friend rang me out of the blue, suggesting I apply to run the newly formed Advanced Community Care Association (ACCA), an NGO created by three leading community health organisations. The three CEOs wanted to reduce what they saw as widespread unnecessary hospitalisation. They had already managed to talk the Government into giving them a small grant to provide care to people in aged care facilities as an alternative to a trip to hospital. Two phone calls, one interview, and within about a week, I had the job.

I started with just a desk, a phone and a small budget. I recruited two colleagues who had the skills and networks I needed for ACCA to have an impact in the system. There was a lot of reading and talking to do, in an effort to get up to speed with current practice, evidence of what did and didn’t work, and at what comparative cost. I quickly encountered the basic conundrum that hampers these programs. A Treasury official told me coolly, ‘Your new program will only interest us if hospital beds close as a result—and that will never happen.’ In general, history since then, in Australia at least, has proved him right.

So I decided early on not to argue that we would save public money, but instead to show that people/patients wanted these new alternatives, and that they were not very expensive to provide. The evidence, from Australia and several other countries, was certainly there. More than 90% of people facing hospital care, if asked whether they would prefer some or all of their care to be at home, say yes, as long as their GP is supportive. This strong preference holds up across gender, socioeconomic status and age, but is routinely ignored, especially in a crisis, resulting in large numbers of people in most hospitals being there more often, and for longer than they need to be.

The ancient hospital in Uzes demonstrated a simple principle; people only went to hospital when there was no acceptable alternative. They knew even then that putting together a lot of people with serious diseases, away from their family and friends, could be a risky proposition, but sometimes poverty and/or the severity of your condition leaves little option. Today, rich countries vie to provide the best hospitals they can, at huge cost, with full support from public opinion. For many conditions and treatments there are complete or partial alternatives to hospital care, but closing beds to provide home care is still seen as political suicide.

In ACCA, we started by getting to know emergency department leaders. Everybody knows many of the people presenting in the ED don’t need to be there, and in some cases definitely shouldn’t be there because of the health risks involved. So it wasn’t controversial to ask about who might be candidates for diversion to home care. ‘Do something about the psychos and the wrinklies’ came up often. Blunt but honest. ‘We can’t help the psychos and we hate seeing the wrinklies falling apart under the stress of ambulance trips, waiting around on stretchers and getting infections.’ Because we had the small grant I mentioned, we decided to have a go at reducing the number of people from aged care homes that were taken to EDs.

It was easy. We advertised to community nursing agencies, looking for competent people prepared to be on call at short notice when either a GP; a nursing home or a paramedic felt that good nursing care would be a better alternative than a trip to hospital. In the first month, we had about two calls a day to our telephone hotline; within six months it was up to 50 a day. GPs loved the service, because the first thing our call centre operators did was call them and ask for advice about one of their patients. Aged care staff, paramedics and ED staff were all equally enthusiastic. And the private nursing operators were ecstatic about so much new business that they didn’t have to chase. Most important, residents and their families spoke highly of this new home care, with wonderful new stories coming in every day.

The disruption and anxiety created by a trip to an ED in an ambulance was only part of the problem we were trying to solve. Even when the health issue is relatively minor to start with, like being dizzy after a fall, or having a cut that needed more than a band-aid, when someone who is extremely old and frail comes into a system geared to diagnose and manage all health risks, getting home any time soon is unlikely. OK, sometimes people get lucky when a previously unknown and easily fixable problem is uncovered. Much more commonly, questions lead to tests and more tests, each taking time to arrange, deliver and analyse. Precious time, when an unhappy, anxious person, possibly already coping with some dementia, deteriorates rapidly, sometimes dying within less than a week. It’s hard to imagine a more lonely, frightening and confusing way to die than this. Most health professionals agree, but seem incapable of coordinating their activities to stop it happening. We made it easy for them. Call ACCA and someone will be there to provide an alternative within the hour. Whether it was to prevent the trip to hospital, to get them out of the ED, or to get them home a few days earlier, we made it all as easy as a phone call.

The best statistics we could find came from the ambulance service. With their help, we could track the impact of the new program on each aged care facility, on each hospital and even on individual residents over time. Within six months, the overall number of ‘carries’ from aged care to EDs was down by 15%. Some patterns began to emerge. For example, some facilities were dramatically more likely to call an ambulance than others; some 10 times the average. We began to dig a little deeper, and found these were all privately owned, and known for penny-pinching on staff selection and training. All too often, their policy when a resident had a minor accident or became unwell was ‘When in doubt, ship them out’. So we offered extra training in first aid and wound management, at no cost to the proprietors. Some took it up, and hospital transfers began to reduce almost immediately. Some turned down the offer because they wanted us to pay for replacement staff while theirs were being trained for a day. We just couldn’t bring ourselves to reward that level of selfishness.

The good stories came in thick and fast. One night-duty nurse rang in to say a very old lady had become delirious and paranoid, and was disturbing the other residents. She couldn’t do anything, because she was on her own, and couldn’t sit with only one of her 75 residents for hours. About to call an ambulance, she remembered ACCA, and rang to talk it over. One of our staff asked who the lady trusted most, and it was a cleaner. We asked if the cleaner would be interested in a few hours overtime to sit with the lady, with us paying. She was, she did, and within an hour the resident was calm and going to sleep.

A hospital rang with a different problem—one of the famous ‘bed blockers’. These were people who resisted all efforts to leave hospital because they were afraid of or simply didn’t want what they were being offered. At a cost of more than $1000 a day, and people waiting in corridors for a bed, this gave hospital administrators nightmares. This patient was too unwell to go home, was eligible for aged care, but kept refusing to consider the places she was offered. So, on day 88 of her stay in hospital ($88,000 and counting), we visited the lady. She told us immediately that people who ran nursing homes were all dreadful and uncaring. She had arrived at this conclusion by talking with other patients, but had never actually met anyone who worked in such places. She agreed to let us find three in suburbs near her relatives and friends, and get someone from each to visit her. We would pay the aged care facilities for their time. She liked the first person who visited, and asked if she could come back next day to continue the discussion. She did, and they got on wonderfully. With her visitor still there, she called in the ward nurse and told her she would be leaving to live in her new friend’s facility as soon as it could be arranged. Face-to-face, caring human contact was all it took. The cost to us was less than $150.

Successes like these meant we were offered more funding to work with anyone, not just aged care residents, who might be able to spend less time, or no time, in hospital with the right community supports. With thousands of people a year using our services, it’s hard to select just a few examples that give the flavour of what could be achieved, but here are three:

Bowel preparation: the CEO of an Adelaide hospital rang me to ask if we could take a look at his ‘colonoscopy ward’. It turned out that the surgeons involved had a policy that people over 75, living on their own, had to come in the night before, for their ‘bowel prep’, and stay the next night in case there were any post-procedure complications. Since no other hospital required any in-patient time for such people, and he had a whole ward full staying for two nights, the CEO wondered if I could talk some sense into the medical staff.

Somehow, I managed to get myself invited to the monthly surgeon’s meeting, where I politely asked about the reasons for the two-night policy. The first was that ‘older folks on their own sometimes stuff up the bowel prep, and we can’t do the procedure with bowels full of faecal matter’. The second night had been instituted many years before because someone had a haemorrhage at home alone, and nearly died before they were discovered. I asked what they would think about us providing a trained community worker to spend a few hours with their patients on each of the two nights. The chief surgeon cut short discussion and said it ‘Sounds like a bloody good idea, and I’m all for it unless any of you have any objections.’ All heads nodded, and that was that. Within a couple of weeks, the ward was empty. With one short discussion, hundreds of people each year would not be going to stay in hospital for a colonoscopy. The cost to ACCA? $200-$300 per patient.

Parklands stand-off: one evening, our call centre was contacted by a policeman about a ‘current situation that’s going pear-shaped.’ A young woman lived in a small van, usually parking in the West Parklands at night, driving in to the city each day for a wash and meals. Right now, she was in a tense stand-off with a police patrol. She and her dog, a Doberman, had returned from a walk to find the van’s windscreen smashed. She became mentally unwell very quickly, screaming at passers-by, accusing them of doing it, which soon resulted in a triple-0 call that brought the police. They were confronted by an obviously psychotic person, being fiercely protected by a large dog. Plan A was to separate her from the dog (it was going to be messy) and take her to an emergency department for a psychiatric assessment. The police call centre people agreed with their plan, because she was a ‘well-known mental patient’ who had been in secure care several times in the last couple of years, with a total of more than 100 nights in hospital.

Amazingly, the policeman thought of us in that moment (maybe it was worrying about how to control the dog) and rang to see if we had any other ideas. He said he thought the big problem was her fear of sleeping in the van with no windscreen. We asked him if it would help if we replaced the windscreen. He liked the idea as long as it could happen quickly. It took an hour and the job was done. The woman and her dog drove off in the van, and the police patrol left for another call. The total cost to ACCA? $244 for the windscreen. In a lovely post-script, the next day the manager of Windscreens O’Brian called to ask if the woman was OK, and to say he was reducing the amount owed to cost-price only. Turns out his son had schizophrenia, and he was happy to have been able to play his part in getting this woman out of a crisis, that he knew all too well could have ended very badly. Even if Plan A had gone reasonably smoothly, the woman would have been in hospital again, terribly distressed, probably for a long stay, her choice of lifestyle ruined.

Door locks: a senior nurse from a large psychiatric ward in a teaching hospital asked us to visit to discuss a ‘bed blocker’ who had been there for about 35 nights. She came in as a voluntary patient, during a period of mania due to her bi-polar disorder. A change of medication had calmed her down, but she had remained highly anxious about going home, because she believed that people had broken in and changed the locks. Stronger anti-psychotic medication combined with individual and group therapy had not shaken this belief, so every time they suggested she go home, she became hysterical. The hospital administration was now breathing down their necks about the back-up of people in other wards and the emergency department, needing a bed in the psych ward. In desperation, they called us.

We sent in a nurse who sat with the woman, and asked what we could do to help. She asked us to get her locks changed. We did, at a cost of about $150, and went in the next day to tell her it was done. She asked us to accompany her to her home when she left the hospital that day, so that she could check the locks with us there. We did that, all was OK, she thanked us and told us we could leave.

Of course, there were many times we just couldn’t make any headway, even though we knew community care would be effective and preferable to the individual and their family. Such as when respiratory surgeons insisted that children with cystic fibrosis come into hospital for every appointment, when the wider trend was to keep people with such compromised resistance to all sorts of infections as far away from hospital as possible. Why? Because they didn’t trust GPs. No discussion was even countenanced.

But with such a huge number of people we could help, with full cooperation from the person themselves, their GP and all other clinicians involved, we learned to be patient, and not use up much energy on the ones we couldn’t win. Every hospital, every GP was different, and often the right mix of people would coalesce out of the blue, enabling the previously unthinkable to become what everyone wanted.

We had absorbed some key lessons from all this.

First, most of the reasons for unnecessary visits to or long stays in hospital were not clinical. They were social and psychological. The majority of our interventions were about companionship, practical help with food, transport and negotiating new options in the community. It rankled many health bureaucrats and professionals, but this was just as much about ‘welfare work’ as it was about new ways of delivering clinical services

Second, people didn’t need to be assessed, re-assessed and re-assessed every time they needed help. Virtually all our clients had extensive records in the health system, and we almost never started a new investigation. That took time, and if decisions about alternatives were not made immediately, hospital was the default. We used the information that was already available, because there was usually more than enough.

Third, the slogan we had was the right one—’whatever it takes’. We gave our people the mandate and the means to follow their nose to quickly available solutions, doing things that were just not possible for clinicians in any setting. Usual practice in health systems, then and now, simply doesn’t have all the answers.

After a little more than three years, the government contracts for all this work—by then worth about $7 million a year—were put out for tender. We lost the lot to a for-profit nurse-run company that went on to ignore all three of the lessons above. The delays, unnecessary costs and narrowly clinical understandings were back, and the impact was quickly obvious. The Consultant in charge of one emergency department lamented to me a few months later; ‘David, the wrinklies and psychos are back, and the ambulance gridlocks are back and what the hell was the Department of Health thinking?’

It was hard for me for a while. I suppose it dented my faith in progress. Things don’t always lean towards gradual improvement. This was some of the most satisfying work I’d ever been involved in, in terms of giving people a better health service. But health tribalism, clumsy bureaucracy and some silly interpersonal issues between key players undid most of our work overnight. More than ten years later, I have to admit it still grieves me to think of how all that ended. There are parts of the world—Canada and New Zealand are leading examples—where the lessons we learned underpin widely accepted policy and practice. But in Australia community programs that provide alternatives to unnecessary hospitalisation are still painfully slow to develop; front and centre in every policy document, but usually lucky if they get the small change left over from running hospitals. The age of hospital dominance of health systems has many years to go yet.

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