De Kafkabrigade

Lying is the new smoking

When Mijntje is 93 she stumbles over a side table. She arrives at the emergency department of the hospital. Medically, there is little they can do for her at the hospital. But she cannot go home either. For several reasons the transfer of care is delayed. Because of that, she lays in a hospital bed waiting for a little less than a week. However, the longer people wait in a hospital bed – especially the very old –, the slimmer the chances at an independent life in their own homes. Because with very old people like Mijntje, the presence in a complex medical environment quickly causes loss of functional ability, confidence and usually confusion. Are they more or less 'cured' on the first day, after a few the days more the loss of functionality prevails. If we have to wait too long for the aid to live independently in our own homes, we don't come home again! However all organisations involved in this region took a joint initiative to chang this. And to change this in the short run.

Introduction and short description of the case research

In a letter to parliament, the Minister specified she wanted to use the Kafka method, a proven method of action research in which representative experiences – of patients in this case – are used to identify barriers to delivering the public value for which the organisations are established, and to trigger a change process to remove those barriers. Just before the summer of 2015, the Minister of Health in the Netherlands – Edith Schippers – took the initiative to commission case research into dysfunctional bureaucracy in healthcare. In a letter to parliament, the Minister specified she wanted to use the Kafka method, a proven method of action research in which representative experiences – of patients in this case – are used to identify barriers to delivering the public value for which the organisations are established, and to trigger a change process to remove those barriers. The problems are diagnosed from the perspective of the individuals involved, and not from the perspective of the health system. It's a way of finding out the barriers are for service users, and crucially for front-line professionals and public managers who struggle with dysfunction day to day. In our experience, multiple barriers and unintended consequences of well-intentioned policies combine to create a tangle of issues that needs unknotting. The Kafka case method helps to do this. In this specific region – The Zaanstreek one of the oldest industrial areas of the Netherlands just north of Amsterdam – all involved, from the front-line professionals to the board members of various organisations, were willing to take the effort to look into the representative case of Mijntje. Mijntje was 93 when she stubled over a side table and got into the hospital with an ambulance. Medically, there was little that had to be done for Mijntje. However she could not go home. Temporarily the immediate availability of nursing care was needed around the clock. Of several reasons this could not be made available at that moment. This meant she had to wait in a hospital bed for the transfer of care. After her temporary stay in a nursing home, she has been at her own house for a short time. But from day one at her own house it was clear that she needed to go to a care home. She lived there a few months happily before she died.

Mijntje is far from a unique case. The large majority of people that need care or some kind of aid before they can go home are very old. In this region on average 83 years. These people usually arrive at the hospital with a problem that is – in medical terms – almost trivial. But it is acute at that moment. And often they have several medical problems. And because of that, they cannot go home without aid or some form of care. A large majority has to wait in this region.

The reasons why people have to wait, on that the perspectives differed at the start. Just like the question if this is a problem in the first place. That is understandable. Every professional involved is part of an organisational context that influences their perspective. A hospital in the Netherlands has a strong financial incentive to get people out of the hospital and sees in this the public value: the patients have to wait for the continuation of their treatment and the hospital has to divert ambulances regularly because the hospital is full with all consequences that go with that. However the transfer nurses, responsible for the paperwork involved in the transfer of care and who feel the pressure of the hospitals financial interests, question the fact if all this hurry is in the best interest of the patient. Isn't it a good thing to hold them for observation for a while? The cluster manager of the care organisation rather places new patients immediately in the right location. And hurry does not assist a carefull process. The specialist in geriatric medicine doesn't want all that the moving of patients at all. And if that is true, who should have prevented that moving around with patients? The health insurers say they have tried to nudge the general practitioners into calling all their very old patients once a year. However, they don't. The general practitioners say that you need to have an abundance of time to take all the paperwork involved for granted. And the social district teams say that – unless the very old report themselves – they have no idea where to find them. And because the workload is so high, they have no time to reach out to them pro-actively.

Everybody does his very best, and yet the outcome is undesirable. How can that be explained?All involved where gathered in the same room to discuss the case of Mijntje. The professionals, public managers and board members of both hospital, care organisation, health insurer, and municipality, the policy makers of the Ministery and the Minister of Health. After Mijntjes daughter and son in law had told their story and the medical professionals had stated that twice she was diagnosed incompletely and twice she had not received the care she needed nor in a timely fashion, it became silent. Until Ron, son in law to Mijtje, stated that he believed that everybody had done their very best. Everybody does his very best, and yet the outcome is undesirable. How can that be explained?

Problem analyses

In the discussion that follows, those involved make an analyses in which a diversity of problems is identified from the patients perspective.

There already is a somatic problem before the patient is brought to the hospital
Like in the case of Mijntje, quite often the specialist geriatric medicine diagnoses problems other than the acute problem for which the patient arrives at the hospital. It's about low bloodsugars, dehydration, too much medication and alike. Issues that can be part of the cause of the acute problem, such as a fall, and that can be the reason that someone cannot go home without aid or care.

People are moved around too much
When people arrive at the hospital via the emergency department, they are moved within a few days at least four or five times. Every day of half a day they see new faces around the bed. The ambulance, the emergency department, the acute intake department, the nursing department, the nursing home and back to their home. Or not. This can contribute to the confusion, the desorientation and can as a consequence be a barrier for diagnosis and a return to independent living.

Loss of functional ability during waiting in the hospital
In the hospital old people loose functional ability. At the same time there is a lot of knowledge about how this loss of functional ability can be prevented, both physically as well as mentally. The causes are both in the fact that there is too little attention for this in hospitals as well as the delay in transfer of care.

The care is not continuous
The care of the different organisations should join seamlessly, but it does not. As a result very old people wait in a hospital bed for continuation of their treatment, such as revalidation.

Prevention is preferable over cure
In most cases it seems that the prevention of a visit to the hospital could have been better for the patient. There is little needed from a medial point of view, but there is an acute problem nonetheless.

Incomplete communication with patient, their family or caregivers
The patient and the caregivers don't always have the complete picture of what is going to happen and at what moment.

Incomplete and scattered information
Patients and their caregivers, but professionals the professionals that have to inform them as well, have difficulty to clarify from the health insurers or the municipality what care is compensated and what care is available in the region. This kind of knowledge requires to fathom and combine national law, local supply and information from the health insurers. Because of this, it's often unclear what th patient has to do to receive the care and where.

Transfer of information between care organisations is not optimal
In many cases there is no transfer of information and is the patient required to inform the next organisation of the situation. Most often information is tranferred via the patient. This is true for almost every terrain, for passing information about changes to nurses in the district, the specialist geriatric medicine does not get complete nor timely information from the hospital and/or the general practitioner. A general practitioner does not receive the complete information from the hospital and is not always informed about hospital discharge.

Not the right knowledge at the emergency department
At the emergency department should more geriatric knowledge be available. This way hospitalisation could be partly prevented at this point in the chain.

There is nobody responsible for the whole, nobody has sight on the whole
Nobody is responsible for the chain of organisations as a whole, nor is there a unanimous opinion about who that should be.

We don't make agreements on regional coverage of the availability of care
Every care organisation has the responsibility to inform themselves about the availability of care and to make agreements if the availability fall short. This is also true for the week-ends and outside office hours. Only if we do this, there will be options in situations of crisis and only then it will be clear what those options are. The care at home is not yet ready for 24/7. There is lack of good regional agreements.

The availability of care is incomplete
There is a need for new and innovative care. Although there is discussion about how this should be called, there is unanimity about the fact that there is insufficient and insufficiently available temporary care for people that need relatively little care, but need the availability of it. Because of this, people wait in an expensive hospital bed where they could have received better care or less cost.

Common problem definition

all previously named problems are points of engagement for a better outcomeMijntje is representative for the largest group of people that need care or aid after hospitalisation: the very old. Core of the problem is the rapid loss of functional ability if they do not get the right care or the right care in a timely fashion. The odds of return to an independent life in their own home rapidly decreases in such as case. And it's clear everybody in the room believes this is the desirable outcome if it was about themselves. Everybody in the room also agrees that as a collective it's their responsibility to address this problem. There is not a single cause. But all previously named problems are points of engagement for a better outcome. Because all those involved were able to formulate the challenge as a collective challenge, it becomes easier to see differences in interests as an opportunity to support eachother and to be supported in achieving the common goal. Conflicts of interest become opportunities for trades or exchanges. The outcome for the patient helps as well to define a common measure of what is right. A measure that is not attached to a specific or a single organisation. This also makes it easier to improve over the whole of the chain of organisations. The improvent of the quality of care for the patient should become visible in the deminishing of the number of very old people that arrives at the emergency department with a social indication. It should become visible in shorter delays in the transfer of care. And it should be visible in less moments where the hospital has to divert ambulances and make the hospital more accessible. The expectation is also that this will save money.

Solutions

In the second half of the discussion, all involved contributed the actions they could deliver on that would improve the service for cases like Mijntje’s.

Cooperation to create temporary nursing care and prevention of loss of functional ability

A vital first step is that the care organisation and the hospital will jointly create a temporary nursing care service. This could take the form of hospitalisation or 24 hours a day nursing care in the home. Second, professionals from the care organisation will be given open access to the hospital to work with patients to avoid the loss of functional ability. These practical measures should enable both prevention of hospitalisation and a quicker transfer of care as well. To make this happen, a transfer of funds is necessary between the organisations, which is perceived to be a barrieras health and social care are financed by different financiers, the state and the health insurers. The Minister of Health provided clarity during the discussion. She committed to bringing both arrangements under the same law, the health insurance law. This means that savings will be visible for a single financier: the health insurers. As a result of this commitment, the health insurer is prepared to look at a plan that anticipates this change of law. This plan will be developed in the coming months and presented to the competition authority (ACM) to give an assessment in advance. If ACM does raise concerns, the Ministry commits to looking into any such immediately. In the days following the discussion, the Minister made a public announcement that she had appointed a team to look into funding barriers to integrated health and social care solutions for other arrangements and other regions as well.

The information challenge

Professionals, like district nurses, currently have to combine a scattered stream of information from national and local health sources with information from insurers, to be able to adequately inform their patients. This creates unnecessary delays to the development of the right support package that will enable people like Mijntje to return home from hospital as soon as possible. Professionals need easier access to transparent information about local availability of care services, about other aid, and about the funding available for each support option. The health insurer is prepared to take a first step by involving the Association of Health Insurers to standardise their policy conditions.

Prevention
Currently, district social teams do not have a complete picture of which people in their districts should be prioritised are localised. Having this complete picture would lower their workload and increase the time social teams can spend on value-adding activities such as fall-prevention training. The information they need to complete this picture is about identifying old people that are vulnerable, being able to spot if people have / have not visited a general practitioner, and so on.
Health insurers however do have this information, and at the level of the district. For a long time previously, health insurers focussed on general practitioners for the timely signaling of problems and informing the very old. There is budget available for general practitioners to map their clients, but uptake was low. This money will now be made available to a wider group of professionals, including district social teams and district nursing teams. The aim is not to reduce cooperation with general practitioners but to improve the quality of shared knowledge about vulnerable older populations.

Monitoring

The actions documented above are the outcome of a first joint meeting. A first, but very concrete step, has been made that has the potential to both enhance the quality of care as well as realisation of savings. The Ministry of Health will monitor the implementation of these agreements in the months ahead. In May 2016, the Kafkabrigade will organise a second collective performance review (structured workshop) to review progress and results. We hope that this way of working will be continued.

Thanks

We would like to thank Ron and Rina, two citizens that have given their time to help improve our public services. We thank all organisations involved: the hospital, The Zaans Medical Center; the care organisation, Evean; the Health Insurer, Silver Cross;. Even more we thank the professionals. Without their openess and their willingness to be vulnerable and talk about what goes wrong, we would not have gained this much insight in how things work in the real world. We further thank them for their willingness to look beyond institutional boundaries to what should be achieved collectively as well as for their concrete pledges to take these first important steps towards this joint challenge. Finally we thank the minister of Health, Edith Schippers, and her team at the Ministery for her willingness to look at how policy works in practise.