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Tilburg Research - 2009, volume 6, number 2
Preface
Who will take care of the old and the sick when everyone
is old and sick? Does the introduction of market forces in
the Dutch health care system have the desired effect? How
effective are lifestyle interventions? How can quality of life
for patients be achieved in a cost efficient health care system? What are we prepared to pay?
We all have to address these questions, and so do Tilburg
University’s researchers. Medical psychologists, ethicists,
law scientists, economists, and theologians contribute
through their research which is firmly rooted in health care
practice. Some researchers even work in the care sector
themselves.
In this issue of Tilburg Research on Dutch health care
reform, the views of our researchers show once more how
complex social change is. That is why we keep on investigating it every day. Eventually, we aim to use our research
to contribute to a better understanding of society, on the
basis of which we can seek real solutions.
Prof. dr. Philip Eijlander
Rector Tilburg University
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FEATURES
2
Tilburg Research
Tilburg Research is a magazine for special-interest groups about research at Tilburg University
in the Netherlands. Tilburg University specializes in the social sciences and humanities.
Colophon
Publisher Marketing & Communications, Tilburg
University
Editor in chief Corine Schouten
Editors Tineke Bennema, Reggy Peters,
Annemeike Tan, Ilja Verouden, René Voogt
Photos Cover photo: Joost van den Broek /
Hollandse Hoogte; Research portraits: Ben
Bergmans
Translation Taalcentrum-VU Amsterdam
Layout and graphic design Beelenkamp
Ontwerpers, Tilburg
Printer Grafische Groep Matthys
The patient as consumer
By Marion de Boo
16
Who cares to pay for care?
When I’m sixty-four
By Rik Oerlemans
22
The electronic child database
By Marga van Zundert
28
The loveliest hospital
By Tineke Bennema
INTERVIEW
10
“If quality of life becomes the decisive
factor, the entire health care sector
will have to be overhauled”
By Corine Schouten
Columns
7 1 + 1 should really make 4
By Mike Leers
14
The Times they are A-Changin’
By Chijs van Nieuwenhuizen
THROUGHOUT THE ISSUE
Research portraits
Viola Spek, Martin Smits, Jan Jans,
Maurice Adams, Roland Friele, Carin Rots
news
Young psychotic patients recover better in their
own environments, Informal care not realistic,
Tranzo and health insurer CZ examine lifestyle
interventions, Hospitals undertake very few
market-oriented activities, Mindfulness works
against stress
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Tilburg Research - 2009, volume 6, number 2
Tilburg Research - 2009, volume 6, number 2
3
Privatization and market forces in the new health care system:
The patient as consumer
By Marion de Boo
How effective is the new Dutch health care system? The waiting lists have
become shorter, but transparency and information provision for patients
still leave something to be desired. It is difficult to measure the exact
effect. Interim assessments from three Tilburg University care researchers.
In 2006 a new health care system
was introduced in the Netherlands.
The patient has become a consumer.
Patients know what is on offer and
make deliberate choices – or at least,
that was the intention. What does
the new health care system mean in
terms of the patient’s position? And
do the data flows on quality differences in the care sector really lead to
improvement? These are the questions addressed in research led by
Diana Delnoij, director of the Dutch
Centre for Consumer Experience in
Health Care and endowed Professor
of Transparency in Health Care at
Tranzo, the academic centre for care
and well-being at Tilburg University.
“I think the most important question
is how to make all that information
gathered by scientists helpful and
accessible to patients”, she says.
Patient organizations also benefit
from transparency regarding quality. “With a research report to back
them up, a patient organization can
appeal to the politicians or the management of a care institution”, says
Delnoij. “It’s only when research
results lead to improvement projects
that the quality of care is actually
raised. Research in other countries
has shown clearly that this stimulus
to set up improvement projects is
heightened if the results of comparative research are widely publicized.”
However, this information must
be sound, reliable and valid. “The
professional practitioners and the
hospitals are very insistent about
that, and rightly so”, stresses
the professor. “Sometimes it’s a
political game to publicize research
results. If the Netherlands Health
Care Inspectorate raises supposed
abuses in the public arena, institutions usually come into action
very quickly. Obviously this game
should not go so far that the public
loses its faith.”
A critical look
Are patients better off with the new
health care system? “It’s mainly a
small group of young, articulate,
highly-educated people who search
for the best care”, says Delnoij. “But
a much larger group lacks the skills
or energy to do that, or they are too
old or too sick. Many people rely
on their GPs to arrange things for
them.” For one-off interventions
which are not urgent, such as cataract surgery or a hip replacement,
patients may look around more
critically. For acute health complaints and for chronic disorders
they prefer to choose an address
close to home. Delnoij: “I don’t
think the most articulate consumers are now picking out the best
deals. Increasing public openness
about differences in quality will lead
to a better range of care services
across the board. People who are a
bit less articulate will also benefit
from that.” Over the next few years
(c) Frank Muller / Hollandse Hoogte
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Tilburg Research - 2009, volume 6, number 2
researchers in Tilburg want to
investigate whether things are really
working out this way.
In the near future care provision
will improve mainly through what
Diana Delnoij calls ‘the approach
route’. In the past two years many
indicators have been measured
Increasing public
openness about quality
differences will lead to
better care
Tilburg Research - 2009, volume 6, number 2
5
the basis of costs. And in the long
term the old health care system was
financially untenable. In the new
system the waiting lists are considerably shorter. Health care costs are
rising less rapidly, because there are
more stimuli for insurers, institutions, doctors and also patients to
combine quality with cost-effectiveness. That was one of the main reasons for the new system.”
The hospital’s own shop
The Onze Lieve Vrouwe Gasthuis
in Amsterdam was one of the first
hospitals to draw attention to itself
with a new business model emphasizing both patient-friendliness and
cost-effectiveness. Doctors are held
and client experiences examined
responsible for both the income
in nursing homes and homes for
and the costs of their wards. Canoy:
the elderly. This information has
“This model is increasingly being
been relayed to the management
adopted by other hospitals, because
of the institutions concerned, but
there is growing dissatisfaction
also made available to the (Dutch)
with the respective traditional roles
consumer choice website www.kiesof hospitals and specialists: if the
beter.nl. “We are now investigating
number of treatments increases and
what improvement processes have
the turnover rises, the specialists
been put in place”, says Delnoij.
enjoy the benefits, but do not bear
Cost-effective
the burdens. In a healthy enterprise
entrepreneurship
the specialists also pay the costs of
From the patient’s point of view,
higher turnover. For example, if they
what works and what doesn’t work
want to purchase new equipment
in the new health care system?
they don’t automatically send the bill
“Before you can answer that questo the hospital, but buy it themselves
tion, you first have to remember
at the hospital. This stimulates the
why it was introduced”, says Marcel
specialists to adopt a more cost-effecCanoy, Professor of Economics and
tive purchasing policy. CustomerRegulation of Health Care at Tilburg friendliness is also becoming an
University. “In the old system there
issue. Patients who have to wait for
were very long waiting lists because
a long time are more likely to go to a
treatments had been rationed on
different hospital.”
(c) Arie Kievit / Hollandse Hoogte
Hospitals can get into difficulties
for all sorts of reasons, but that was
always the case. Canoy mentions
examples of hospitals where relations between the doctors and the
Management Board have broken
down permanently – for instance,
at the IJsselmeer Hospitals. Some
hospitals, such as one in Sittard, are
too ambitious and want to invest too
much in quality, so that their costs
have become too high. “More political
‘Good information
provision is still in its
infancy’
attention is paid to problems like this
and the media respond to that”, says
Canoy. “I think that’s a good thing.
However, that increased media cover-
age doesn’t necessarily mean that
hospitals are performing less well.”
In the future Canoy foresees that
hospitals will specialize, while
routine procedures like cataract
surgery and hip replacements will
be carried out in separate, independent clinics. “Then they can
be completely specialized in those
procedures and can plan cost-effectively. For the patient that is a good
development.”
Information about performance in health care
In Canoy’s opinion, information
about performance in health care is
of great importance to both patients
and regulators. “Good information provision is still in its infancy,
although patient organizations and
the Consumentenbond [Dutch consumer organization, ed.] are working on it. Regulatory bodies have to
know which treatments are profit-
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Tilburg Research - 2009, volume 6, number 2
Tilburg Research - 2009, volume 6, number 2
7
Column
able, to make sure hospitals do not
concentrate too much on lucrative
treatments which do not really help
the patient. Insurers are sometimes
already picking up on this by giving
their customers discounts if they go
to the most cost-effective hospital.
Of course, in this respect the new
system still has to prove itself. After
all, differences between institutions
also arise because patient populations are different. Amsterdam is
not the same as the province of
Zuid-Limburg.”
‘The total costs of health
care may still continue
to rise’
However, institutions complain
about the cartloads of paperwork
caused by measuring the quality of
health care. “Sometimes you wonder if it’s all really so helpful and
necessary”, says Canoy. “But a lot of
data are sorely needed for research
into market operation in health
care. For example, in Tilburg we are
investigating obstacles and possible
solutions regarding merger control,
profit distributions and the role of
medical specialists, who are maintaining their own scarcity.”
Three years after the introduction
of the new system Canoy is making a cautious interim review. “Our
performance in health care has
neither dropped nor risen. The
overall quality has remained stable.
The waiting lists are shorter, but
have not disappeared. The costs of
health care are rising faster than we
would like. And the liberalization
of home care was tackled clumsily,
with disastrous results. It is not a
bad idea to let municipalities put
home care out to contract, but if you
award contracts only on the basis
of price, you’re obviously asking for
problems.”
Waiting lists gone
Wolf Sauter, Professor of Health
Care Regulation at Tilburg and also
employed by the Dutch Health Care
Authority, has also observed that
market operation has contributed
to the disappearance of the long
waiting lists. Providers work hard
to be able to compete on the basis of
quality, for instance by integrating
primary and secondary health care
services. There is now a wide choice
of health care insurers and kinds of
insurance. The premiums for health
care insurance are stable.
However, Sauter says that the quality of care services is not yet transparent enough, while the differences in quality are large. “That is
bad for freedom of choice. Moreover,
it detracts from providers’ motivation to improve. The introduction
of price stimuli in pharmacy is
progressing slowly. It is still difficult
to join many care markets. I myself
would like to see foreign hospital
chains to join the Dutch market
with their best practices. And health
care insurers should steer their
consumers in such a way that they
reward the best care providers and
penalize the bad ones.”
According to Sauter the new health
care system leads to more accessibility, affordability and quality for the
consumer, but it is difficult to measure the exact effect. “You might
expect that competition among
providers would keep the prices in
check. But because of factors like
technical developments and new
treatments, the total costs of health
care may still continue to rise.”
A measure to assess new treatments
is the concept of ‘quality adjusted
life years’ (QALYs). However, policy
makers have not yet agreed on what
one added life year should be
allowed to cost. Should it be
€20,000 or perhaps €60,000? “On
this front our methods can do with
some refinement”, says Sauter. “On
the basis of QALYs it is easier to
assess the cost-effectiveness of new
treatments which seem expensive at
first glance. Within TILEC, where
economists, lawyers and other work
under one roof, we try to make it
easier to compare concepts such as
accessibility, quality and affordability of care services.”
1 + 1 should really make 4
By Mike Leers, member of the Executive Board of Tilburg University and former chair
of the Board of Dutch health insurance company CZ
It may be true that prevention has been better
than cure for centuries.
But when it comes to
solid evidence, objectivity and results, there is
still an academic world
to be won. How effective can prevention
be? Which are the best
interventions? And how
can you keep up your
healthier lifestyle longer
than the first few weeks
of your membership at
the gym?
Finding answers to these
questions was a good reason for health insurance company
CZ and the Tilburg University research institute Tranzo
to join forces to develop, evaluate and introduce lifestyle
interventions for individuals at risk and people with chronic
disorders. The motivation is obvious: basic health insurance
covers more individual prevention. For insurance companies, which compete with each other for maximum health
improvement among the people they insure, investment
in the right kind of prevention is becoming more and more
interesting.
To give an example: it has been shown that diabetes care
is much more effective if it is provided in the framework
of integrated care, with practitioners within each discipline
– and there are quite a few involved in diabetes care – working correctly and at the right point in time, and also coordinating their activities smoothly.
CZ is investing a lot in this project and fortunately it is
paying off: it leads to considerable health benefits for the
patients. If this 1 plus 1 can also make 3, then there will be
many prize-winners: patients will be healthier, they will also
benefit as payers of premiums, and the health insurer will
attract more customers. Provided it is properly substantiated, investing in prevention can kill three birds with one
stone.
But it would be even better if the same stone could kill
four birds. After the success of individual prevention, the
healthier diabetic would then have to become more productive, that is, work longer for the benefit of the community
and not get sick so often. Otherwise only the diabetic
himself or herself will have benefited – and the insurance
company a little bit. There would be no gain for society as a
whole. To put it even more strongly – society would have to
contribute, because sooner or later this fellow citizen who
is now living longer and more healthily will need expensive
care and assistance. Society will put up with a lot, but there
are limits. As a society, ultimately we should not expect
the ‘unproductive’ elderly to foot the bill for prevention. If
you do that, then as a society you are inviting cold-hearted
cutbacks in care for the elderly. The benefits of individual
prevention can also be of benefit to society as a whole.
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Tilburg Research - 2009, volume 6, number 2
Tilburg Research - 2009, volume 6, number 2
9
research portraits
“Hardly any sector as complex
as the health care sector”
Self-help via the internet:
an effective alternative
Name: Martin Smits
Position: Associate Professor of Information Systems and Management
Department: Information Management (Faculty of Economics and Business Administration)
Research: Information management in the health care sector
Name: Viola Spek
Position: Postdoctoral researcher
Institute: Medical Psychology and Neuropsychology, CoRPS
Research: Internet interventions
“
Since September 2007, 8,000 people have signed up
for the online depression course Kleur je leven (Colour
Your Life), for which I had conducted an effectiveness
study. It turned out that for people over fifty the internet
course was at least as effective as normal treatment. A
year later the effect could still be observed. Now I see
the consequences of this study in real life.
then there is little chance of it becoming available to
everyone. The good thing about this intervention is that
it is not expensive. Of course there are people who need
more than a self-help course via the internet. But for
some of them this can also be a good initial treatment
while they are on a waiting list, and it can show them
what you can expect from treatment.
I have always been interested in the prevention of health
disorders and self-help. It was more or less by chance
that I became involved in the study of online care provision. Many of the people suffering from depression I
interviewed for my study were not willing to turn to the
mental health service or a psychologist for help. They
thought group therapy was even worse than no treatment at all. That provided additional motivation for my
research. Good self-help is important.
What I would really like to do is develop a preventive or
self-help intervention, run a trial, work together with
medical staff, care professionals and patient organizations, and look into the costs as well: the entire process
from beginning to end. The goal is to develop an effective intervention which appeals to the target group,
which medical staff and care professionals have confidence in and will refer people to, and which can be
funded within our health care system.
Colour Your Life, a course developed by the Dutch
Trimbos Institute, is now being refined for specific target groups such as people with low socio-economic status and the chronically ill. For the latter group not much
is available as regards psychological care provision.
The Trimbos Institute is also developing other internet
interventions to prevent depression and to improve people’s resilience and personal growth.
Self-help treatments are based on the idea that patients
or clients can cure themselves. If self-help is successful,
it gives patients or clients confidence and perspective for
the future. If their problems recur, they can overcome
them again themselves.
I am studying the cost effectiveness of Colour your Life.
Of course I would like to see the existence of this intervention to be justified, and the costs are part of this. You
have to operate within the framework of attainable funding. If an intervention works but is extremely expensive,
”
“
Health care is one of the biggest sectors in the Netherlands, with highly qualified staff. Hardly any other sector
is as complex and information-intensive. New developments such as the introduction of diagnosis-treatment
combinations (DTCs), output-based funding rather than
budget-based funding and the operation of market forces
have resulted in substantial challenges in my discipline.
One interesting finding from our research concerns a new
appointment system for a hospital. The hospital wanted
to make appointments with patients online or through an
appointment agency. What emerged was that an appointment is not just a matter of planning a doctor, a patient
and a room, possibly with a nurse present as well. The
hospital had up to 180 different sorts of appointments.
To implement the new appointment module in the existing information system, 28 interfaces were needed to connect with various sub-systems. These interfaces will have
to be adjusted every time a new version of the information
system arrives. Not only IT experts have to deal with this
– so does the Management Board of a hospital. Decisions
like this have major consequences.
Transparency in the care sector is becoming increasingly
important and it requires a great deal of information.
The problem is that the regulatory body, the minister,
the insurance companies, the patients and overarching
care organizations all want slightly different information.
For example, after careful consultations with all parties
involved, a reporting module was developed for the mental
health care hospitals. This module could be used to establish 27 performance indicators on the basis of 35 ques-
tions. In our study hospitals were only able to answer half
of the questions. As a result, the advantages of the simple
reporting module were lost.
Another example: in mental health care the standard waiting list time is a maximum of 90 working days. In reality
the average waiting time is from 100 to 200 working days.
How can you reduce the waiting lists with the same staff
capacity? Our research showed that, to put it simply, you
should not aim for a shorter waiting list, but for shorter
waiting time. If people don’t have to wait long, it doesn’t
matter if the waiting list is a bit longer. However, in mental health care waiting time is an unknown concept. For it
to be put in place, operational processes and information
provision would have to be restructured. We tested various
options in a simulation model. With this kind of research
we can assist the management in making decisions about
redesigning operational processes.
One very interesting study I did with Richard Jansen
of Tranzo research institute was about the effect of an
electronic auction system on market operation in maternity care. Maternity care providers had to make offers to
respond to customer demand by means of discounts on
the maximum rate. The result was a discount of 10 to
12 per cent on maternity care. But after one or two years
the maternity care providers started to persuade clients
directly to opt for them, so as to avoid discounts. Moreover,
Health Minister Klink was persuaded to raise the standard
number of maternity care hours from 42 to 48 hours, so
that a shortage of maternity care arose. As a result, the
competition disappeared completely.
”
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Tilburg Research - 2009, volume 6, number 2
Tilburg Research - 2009, volume 6, number 2
11
interview
“If quality of life becomes
the decisive factor, the entire
health care sector will have to
be overhauled”
Jolanda de Vries and Jan Anne Roukema are part-time professors, sharing
the chair of ‘Quality of Life in the Medical Context’ in the Department of
Medical Psychology and the research institute CoRPS at Tilburg University.
They also have a firm footing in medical practice: De Vries is a medical
psychologist at St Elisabeth’s Hospital in Tilburg and Roukema is an oncological surgeon at the same hospital. Both regard their patients’ mental
state as at least as important as their physical condition. But in practice it
is not so easy to act in accordance with this view.
By Corine Schouten
What is quality of life?
Jolanda de Vries: The short version is
that quality of life is what patients
think of what they can still do and
particularly of what they can no
longer do.
Jan Anne Roukema: Doctors always
ask: ‘Can you still ride a bike, can
you still walk up stairs?’ But not how
bad a person thinks it is not to be
able to do these things. I used to do
the same thing. But what if someone
doesn’t have any stairs? If you ask
what people think about their situation, the whole picture changes.
De Vries: Then as a doctor you start
to focus only on things that really
bother people.
How does quality of life influence
the disease, or in other words what
is the connection between the body
and mind?
De Vries: That connection exists at
different levels. If people feel well
physically, they feel better in general. The body affects the mind.
But we also know that the mind
(c) Rutger van der Bent / Hollandse Hoogte
affects the body, for example that
stress puts pressure on the immune
system and eventually impairs it.
People who are fearful, for instance
my cancer patients, also have
physical sensations, and if the fear
remains, problems arise. Studies
of wound healing show that the
wounds of people experiencing a
lot of stress heal less well.
Roukema: If fear is the overriding
feeling patients have, such as fear
of cancer, then you are short-chang-
ing them if you ignore that when
treating them. Most doctors look
at how the cancer should be tackled
without realizing that the fear is
actually worse than the cancer.
We have discovered that a woman’s
decision as to whether or not to
have breast-saving surgery is partly
to do with personality. If a woman
who is anxious by nature opts
for breast-saving surgery, ultimately her quality of life will be
poorer.
De Vries: Women who are anxious
by nature and are diagnosed with a
benign tumour often have poorer
quality of life afterwards as well.
Roukema: A woman like that constantly lives with the thought that
it might be cancer. It turns out, for
instance, that she can no longer
enjoy certain things. That means we
have mucked up her life with our
breast cancer screening, which actually was a shocking discovery for us.
We are now asking ourselves how
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Tilburg Research - 2009, volume 6, number 2
many happy lives it may cost to cure
one woman of breast cancer. It’s the
same thing with Swine flu – fear of
this disease is aroused by experts.
The Dutch comedian Freek de Jonge
put it well: ‘This civilization will perish because we are unable to cope
with uncertainties.’
What happens with quality of life in
medical practice?
De Vries: A year ago it became standard procedure here at St Elisabeth’s
Hospital for a screening list for psychosocial problems to be filled in by
women with breast cancer who are
being given supplementary chemotherapy. If any problems show up
– and they are often related to fear
– then the women are referred to a
psychologist at the hospital.
Roukema: It may also emerge during
one of our team consultations about
patients, that a patient is particularly
anxious. Then counselling and support can be offered.
And what happens outside medical
practice?
De Vries: In the Tilburg University
Medical Psychology Master’s programme we teach the oncology block
in conjunction with internists. In
that context we pass on medical
knowledge on the basis of the view
that the body and mind interact with
each other. We show that medicine
and psychology are intertwined.
Roukema: Structural interaction like
this between psychology and clinical practice also exists in the Tilburg
University research institute CoRPS
(Center of Research on Psychology
in Somatic diseases, ed.). Our
Medical Psychology Master’s programme is always over-enrolled, but
it has not yet been set up elsewhere
in the Netherlands.
Shouldn’t things also be happening
at the policy and management level?
De Vries: Certainly. The Management
Board of St Elisabeth’s Hospital has
stated very clearly that medical psychology is important to the hospital.
They have made that choice, but in
many hospitals psychology is a poor
relation.
Roukema: If quality of life becomes
a decisive factor in the discussion of
which treatments we should spend
money on in the Netherlands, then
the entire health care sector will
have to be overhauled. Then patients
themselves would be able to decide
which treatment they will or will not
undergo. Many doctors still have to
learn that patients are perfectly capable of making their own decisions,
even if the doctor doesn’t like those
decisions. I have learnt that myself
over the years, particularly regarding
older women with breast cancer who
do not want any surgery. I hope that
this insight will spread.
What’s so hard about that?
Roukema: The problem is that doctors have just as much difficulty
living with uncertainties as patients
do. For example, there are now international agreements that chemotherapy will be applied if it results
in a 5% higher survival rate, no
Tilburg Research - 2009, volume 6, number 2
matter how much it costs. This was
based on ‘recommendations’ by the
pharmaceutical industry. It means
that we short-change 95 out of 100
patients with our treatment; yet they
all vomit and they all go bald. Why
don’t we have the wisdom to say, ‘we
shouldn’t do that’? Doctors are afraid
of being prosecuted.
De Vries: We also have to do a certain percentage of breast-saving
operations, for example, because
otherwise it reflects on the quality of
the clinic. I think this is absolutely
shocking. Health care is about people, not things.
Has the introduction of market
forces in the health care system also
had an effect?
Roukema: Market forces mean that
people waste energy discussing how
to operate as effectively, cheaply and
efficiently as possible in comparison
with their competitors. Paying attention to the patient, which should be
on the top of the list of priorities, is
closer to the bottom. Attention – in
other words care – costs money and
doesn’t pay anything.
But then how can quality of life
become a decisive factor?
De Vries: One way is to provide scientific proof.
Roukema: One of the biggest
research projects we have running now is about the relationship
between breast cancer patients’
personalities and their prognoses.
We have never been able to prove
a relationship between depression
and cancer, but perhaps there is
a relationship between a certain
personality and cancer or perhaps a
person with that personality doesn’t
survive as long after getting cancer.
We think that personality may well
be one determinant, along with the
size and type of the tumour, and
whether there is anything in the
lymph nodes.
De Vries: The Dutch Cancer Society
is funding another research project
of ours regarding cognitive impairments resulting from chemotherapy
– also known as ‘chemo brain’. The
relation between chemotherapy and
cognitive impairments has never
been conclusively proved. We are
investigating whether chemotherapy
causes these cognitive impairments
or whether they are caused mainly
by fear, fatigue and depression, since
we also know that people sometimes
have memory and attention problems when they are tired or anxious.
And what should change in medical
practice?
Roukema: It is clear that doctors are
constantly failing with regard to providing information and support for
their patients. Doctors have not been
trained in those areas and are always
in a hurry. The new funding structure, which is based on piecework,
does not take them into account
either. However, certain professionals are good at these things: nurse
practitioners and physician assistants. Apparently nurse practitioners
are able to make huge progress with
patients in a short time. I would not
be surprised if over the next few
years the number of doctors does not
rise whereas the number of nurse
practitioners does.
De Vries: That psychosocial screening list for breast cancer patients I
was talking about before is also presented to the patient by a nurse practitioner. The effect of nurse practitioners is so obvious that they are
deployed more and more frequently
for other illnesses. Certain hospitals
are leading the way in this respect,
but breast cancer nurse practitioners are already engaged all over the
Netherlands. However, doctors don’t
like to let go. It will be a long time
before the whole medical practice
has been converted.
Do patients also need to change?
Roukema: Yes. At present we have
an atmosphere of mutual distrust,
with the patient gathering all sorts
of information and going somewhere else for a second opinion. I do
believe that the patient’s opinion can
13
be the decisive factor in decisionmaking about their treatment. But
the patient must also be aware that
all decisions entail risks. It is not
always the case that if something
can be done it should be done. This
requires awareness, and market
forces are not conducive to that.
We are hounding each other into a
health care consumer society which
can no longer be kept in check.
Ultimately not only the patient and
doctor should change, but the whole
of society.
14
Tilburg Research - 2009, volume 6, number 2
Tilburg Research - 2009, volume 6, number 2
Column
NEWS
The Times They Are A-Changin'
Young psychotic patients recover better in their
own environments
By Chijs van Nieuwenhuizen, Professor of Forensic Mental Health Care, Tilburg University,
Department of Tranzo; GGzE, Institute of Mental Health Care Service, Centre for Child &
Adolescent Psychiatry
Some lyrics, such as Bob
Dylan’s The Times They
Are A-Changin', are still
relevant even after forty
years. Many changes are
taking place in health care
and for those working in the
sector it sometimes feels as
though the water is rising
so fast their only option is
to sink or swim. But I am
not going to bore you with the consequences of working
with Diagnosis-Treatment Combinations, the changes in
funding by health care insurers and the ever-widening gap
between health care practitioners and the managers at
the top. I want to talk about another notorious gap – that
between science and practice. The stereotype is of the
unworldly scientist who just can’t understand that a real
patient is never included in an RCT (randomized controlled
trial) and the professional practitioner who refuses to offer
evidence-based interventions and stubbornly adheres to
his or her own way of doing things. Or in other words – the
ivory tower of the university and the daily reality of care
providers.
In my work at a large mental health care institution I have
been trying for years to find the right balance between scientific research and daily clinical practice. That is no easy
task. What helps is the academic workplace arrangement
the Tranzo department, as one of the first university departments, has been working with for over eight years. At an
academic workplace, researchers work in close collaboration with practice-based organizations. Research of this
kind can be conducted by ‘science practitioners’: professionals who work partly in practice and partly on research
– in some cases PhD research – within the university. Every
science practitioner acts as a kind of bridge between science and practice. As a professor at the academic workplace Geestdrift, I supervise several science practitioners
and I frequently see the strength and advantages of this
arrangement. For example, a clinical psychologist is conducting research relating to chronic psychiatric care with a
stepped wedge trial design with a large number of measuring points. Because she works in that field and knows
many patients, she is able to keep the drop-out rate to a
minimum.
To give another example: recently our Forensic Mental
Health Care research group (Tilburg University/GGzE,
Institute of Mental Health Care) was awarded a government grant for a project with the title ‘Prevention of relapse
and recidivism of youngsters with severe psychological
and psychiatric problems: identification of a developmental model based on needs, risks and protective factors’. Obviously – I would like to say – this project will be
conducted in collaboration with several custodial juvenile
institutions and centres for juvenile forensic psychiatry and
orthopsychiatry. In addition to funding for the research
project itself, we also received a practitioners’ bonus. This
bonus is intended to raise the profile of research among
staff. For instance, practitioners who are interested in the
research project can take part in conducting it. I am convinced that things like this – personal contact and involving
care practitioners and patients in research – will lead to
change.
15
Young people with psychotic disorders should be treated
as early as possible, and in their own environments. Care
providers specializing in various fields should work together
to address all of the patient’s care needs. This has emerged
in PhD research on Assertive Community Treatment (ACT)
conducted by Giel Verhaegh. ACT is preventive in nature
and is characterized by pro-active interventions. The results
of this treatment model as regards quality of life, social
functioning and mental condition have proved to be better
than those of standard care procedures. The costs of ACT
are also lower.
For his research, Verhaegh collected information from a
total of 149 patients from the Dutch province of North
Brabant. They were right at the beginning of the recovery
stage and were still suffering a lot from psychotic experiences. The goal of ACT is to prevent patients’ condition
from worsening and also for them to resume their former
roles in society without delay. To ensure that the recovery
process runs as smoothly as possible, informal carers are
actively involved in the treatment.
Mindfulness works against stress
Mindfulness – adopting an open and non-judgmental attitude to life – is a hot topic. Popular magazines frequently
focus on it; but is the hype justified? According to Tilburg
psychologist Dr Ivan Nyklicek it is.
Mindfulness can be described as the conscious perception of ‘what is’, without immediately labelling it as
‘good’ or ‘bad’ and wanting to change it. This applies not
only to events outside yourself, such as finding yourself
in a traffic jam, but also – and particularly – to feelings
such as fear of arriving somewhere late.
Ivan Nyklicek had thirty people suffering from stress who
signed up for ‘attention-oriented stress reduction training’ attend a mindfulness training session. This kind of
training was developed in the 1970s by Dr J. Kabat-Zinn
of the University of Massachusetts. Nyklicek compared
the experiences of these people with those of thirty others who had been put on a waiting list.
Those attending the training session practiced focusing attention on events mindfully and non-judgmentally, with the help of attentive breathing, gentle hatha
yoga and insight meditation. The difference between
attention-focused training and yoga techniques is that
people acquire insight into automatic mental patterns of
thoughts and feelings and learn to release them.
Before and after the training session the participants
filled in questionnaires which provided evidence about
levels of stress and mindfulness. The outcomes, published in the scientific journal Annals of Behavioral
Medicine, showed that the stress levels of people who
had attended the training session had dropped significantly more than those of people on the waiting list.
Moreover, this drop was directly related to and statistically dependent on a rise in mindfulness.
16
Tilburg Research - 2009, volume 6, number 2
Tilburg Research - 2009, volume 6, number 2
17
Who cares to pay for care?
When I’m sixty-four
By Rik Oerlemans
Who will take care of the old and the sick when everyone is old and sick?
In twenty years’ time we will have reached the point that more people
are over than under fifty – a scary situation which is gradually becoming
reality. And because older people also go on living for quite longer than
they used to, we are right to ask if we will still be able to afford the cost of
care and old age pensions when the streetscape is dominated by walking
frames.
Professor Johan Polder of Tranzo,
Tilburg University’s Scientific
Centre for Care and Welfare, also
works at RIVM, a knowledge institute associated with the Ministry
of Health, Welfare and Sport. He
thinks concerns about the high costs
of old age are really nonsense. “The
question is not what good health
care costs, but what it’s worth to
you. If a loved one is sick, no price
is too high for us. If the sick person is your neighbour, you resign
yourself to the situation a bit more
easily. And if it’s a stranger who is
sick, people start to ask if it wouldn’t
make more sense to spend money
on reducing traffic congestion than
on extending human lives.” This
reduces the question to a matter
of mentality. It’s true: since 1985
companies and individuals have
earned loads of money. But where is
it? Hidden away in real estate, spent
on cars and holidays, dormant in
private savings accounts and obligations. Everywhere except in the care
sector.
The economy and the
motives of a healthy nation
Nevertheless, most of us still prefer
to buy a new car every three years
rather than to invest money in better
health care. There is little evidence
of solidarity. We want more and better health care, but no-one wants to
pay for it. On the same basis people
complain about how much their
health insurance costs, considering
they are never sick anyway. But they
complain a lot more when they are
in fact confronted with sickness and
find out how long they will have to
wait for an operation. Many people
actually find it hard to accept that
when they are healthy their health
insurance premiums are used to
make other people better.
Polder would actually like to measure what value society places on
public health. “Everyone wants to
be healthy, that’s the first thing
people say if you ask them what
the most important thing in life
is. But I would like to know what
they are prepared to pay for it. That
would provide an instrument to use
government revenue in a different
way. We are conducting an initial
(c) Joost Hoving / Hollandse Hoogte
18
Tilburg Research - 2009, volume 6, number 2
inquiry for the Ministry of Health
into the social benefits of health:
what benefits are there for society if
people adopt a healthier lifestyle? To
what extent should the government
interfere with people’s healthy or
unhealthy living patterns? And how
effective are certain government
measures? You know, I really hate
smoking, but I can see the point of
view of the owners of small pubs
that have to become smoke-free.
Their incomes are decimated and
their former regular customers just
carry on smoking at home. Tackling
obesity will be even more difficult.
Does the government have the right
to snoop around in our kitchens? I
don’t know about that.”
Paradoxes
A tricky dilemma – as is the fact
that health care is expensive and
always will be, simply because it
is labour-intensive. You can make
a machine to wash a car, but not
to wash a human being. Higher
production with fewer people is not
an option for hospitals and homes
for the elderly. It is becoming even
more expensive, because wages in
the care sector are linked to average
wages. Just because of that, apart
from any other influences, the care
sector must receive one per cent
extra a year in order to stay at the
same level. Moreover, both in good
times and in bad the care sector is
faced with chronic staff shortages.
If the economy is doing well, people
prefer to work in business because
that’s where the best wages are paid.
If the economy is not doing so well,
plenty of care staff are available,
but the sector lacks the resources
to employ enough of them in tough
economic times.
Another ironic paradox is the
feminization of the labour market.
Increasing numbers of women are
training at university and getting
jobs, which means that they have
less time for caring tasks. It used
to be normal to help your ageing
parents by providing informal care.
Now these tasks are outsourced to
the care sector. The result is that
less qualified women care for the
parents of highly-qualified women.
It is interesting to reflect on cutbacks in home care in the light of
this fact.
Who decides what, for
whom and why?
Everyone knows that people in the
lowest strata of society have the
most unhealthy lifestyles. Apart
from that, they do everything
sooner: getting married, having
children, and also dying. But – during their relatively short lives they
do contribute to the pensions of the
highly-qualified people who live
more healthily and on average live
considerably longer. Those people themselves will never benefit
from these contributions for long.
Something jars here. “We have a
good picture of the real lower stratum now”, says Polder. “These days
Tilburg Research - 2009, volume 6, number 2
anyone with a brain can go to university. Those we are left with are
the truly disadvantaged: the people
who were born poor and are guaranteed to remain poor. They are the
ones we should be concerned about.
But what should we do? It’s clear
that if Minister Klink wants to attain
health goals, he will have to tackle
the lowest stratum. But why should
the lowest stratum raise itself up
according to standards imposed by
the government? Does the government have the right to determine
how much jam people can put on
their bread? If you want people to
change their habits you have to do
that on those people’s terms. But we
have absolutely no idea how to do
that.”
Fat is expensive
Things were different in the past.
The way companies like Philips
and Bata used to pamper their
employees by providing housing,
health care and funding for training is unthinkable now. Something
has changed in our mentality and
actions, and we are less concerned
about others than we used to be.
Employers are no longer steady
anchors in our lives, but means of
climbing up quickly. Our way of life
is more opportunistic, more fleeting
and more selfish. The other side of
all this freedom is that nobody cares
what happens to us or how healthily we live. We have become passing ships, without home harbours.
“The NS [Dutch Railways] are still
19
the irony is that people cost the most
money during their last year of life.
“It’s not that expensive to have people grow old fairly pleasantly. The
meter only starts to run in earnest
when they need constant medical
care. Most care costs are incurred
during the last year of life.”
trying”, says Polder. “They are offering their staff all kinds of fitness
programmes and training sessions.
But in practice they still have to take
overweight conductors into account
when making rosters: some are so
big they can’t get up the steps in
the double-decker trains to check
tickets. What are you supposed to
do? Some companies bring up their
employees’ health at job performance reviews and more and more
often being overweight is a reason
for not getting a job. You can hope
this will lead to a form of self-regulation. But on the other hand – when
I had to have a medical examination for a mortgage recently I felt
personally humiliated. If someone
or something intervenes in matters
concerning your health, that deeply
affects your freedom to live as you
want to. That is the dilemma that
always crops up.”
Dying is more expensive than
living
There’s another dilemma: just
imagine that we succeed in getting
people to abandon their unhealthy
habits. That would place a burden on
society too, because the older people
become, the more they cost in care.
But according to Polder this increase
would not be very great – less than
1 per cent a year, he calculates. And
Live long, die fast – that could be the
motto. But fortunately people don’t
have control over that themselves.
Besides, the quality of a society is
reflected precisely in the care it provides for its weak and needy members. At the same time, obviously
people who are healthy can also stay
productive for longer. That means
that people can work longer for their
own pensions and help to care for
people who are no longer able to do
so. If we can also manage to have
some compassion for people who are
unable to live healthily or are confronted with medical problems for
one reason or another, then in twenty
years’ time we will not have changed
into an ageing nation but into a fit,
active and united one. And though
John Maynard Keynes was right
when he said, ‘In the long run, we
are all dead’, our ambition is clear.
20
Tilburg Research - 2009, volume 6, number 2
Tilburg Research - 2009, volume 6, number 2
Legislation on euthanasia is
a rather blunt instrument
Euthanasia:
“The legislator must stay alert”
Name: Jan Jans
Position: Associate Professor
Department: Department of Religious Studies and Theology
Research: Euthanasia in Europe
“
The beginning of my research on euthanasia at the
end of the nineties was inspired by the remarks of some
colleagues at conferences in places like Turku, Padua or
Berlin. They were amazed about the terrible things happening in the Netherlands with regard to voluntary ending
of life on request. In my reply, I discerned that although
I had a general idea why there were indeed reasons to be
worried, my knowledge on the matter was not precise
enough.
At the occasion of a legislative initiative on euthanasia
in Belgium in the autumn of 1999, I was invited to contribute to a German volume on ethics and legislation in
Europe. This publication led to more requests, including participation to expert seminars in South Africa and
Poland. The latter seminar turned out to be a very good
experience, because I was asked to present the Dutch
legislation “sine ira et studio” – without anger or partiality. The result was that those present got a much more
nuanced picture – which was also troublesome for most.
Although they were hesitant to agree with a statement
by mgr. Philippe Bär, former bishop of Rotterdam who
claimed that “in the Netherlands, the evil of euthanasia is
at least well regulated”, a simple black or white rejection or
acceptation of legislation on euthanasia had become more
difficult.
For myself, this points to a main task of ethics, which is to
dare to confront the ambiguity and complexity of reality,
even when it is upsetting. It is better than turning your
back on reality and accept an imposed normative ruling or
simply fall into a kind of voluntarism.
An important conclusion from my research, also building
on responses from people in the field of nursing and medicine, is that legislation on medical-ethical decisions at the
end of life is a rather blunt instrument, and that there is
often no escape from the specific practical questions on
suffering. Although in general rather true, good palliative
care cannot solve the whole problem of dying in pain and
suffering. The ethical point of view one takes is of utmost
importance: it makes a world of difference if one reasons
from a position stressing the so-called autonomy of the
patient or if one builds on the insights of a relational ethics of care.
The broader theoretical issue is not to simply accept the
existing plurality in ethics and strive for a seemingly tolerant multiculturalism, but to keep asking normative questions about the good and the right from an intercultural
point of view. This also shapes the future of some of my
research. I hope an intercultural ethics of care can contribute to the social coherence of society and as such to the
common good.
”
21
Name: Maurice Adams
Position: Professor of General Jurisprudence
Department: Encyclopaedia of Law
Research: Euthanasia and law in Europe
“
In a large number of countries the regulation of euthanasia is still a taboo; usually prohibition of any such
regulation is based on the argument that it ensures better
protection for the weak and vulnerable. But if you want to
protect the weak, good regulation will be helpful because
it makes the decision-making processes much clearer and
more transparent. We should not forget that euthanasia
will occur anyway if it is not regulated, sometimes even
without being asked for. That is definitely no way to protect
the weak.
Large-scale comparative research into the regulation of
euthanasia and termination of life had never been conducted. This is one of the reasons why I examined and documented the situation in eight European countries, in conjunction with colleagues from the University of Groningen.
In most of these countries euthanasia is prohibited. The
results were published in the book Euthanasia and Law in
Europe.
As well as examining and documenting the present regulations, we also investigated the processes of changing the
law, specifically in the Netherlands and Belgium. In the
Netherlands it took a good 25 years before legislation was
passed in 2002. Before that acts of euthanasia were already
permitted on the basis of case law. Some influential factors
in the regulation process were patient and doctors’ organizations, case law, public opinion and political structures.
The regulation process turned out to be a broad social
process. In Belgium, on the other hand, the legislation
was developed and implemented in no more than three
years. The regulation process there was purely political.
Obviously that had consequences for the process of acceptance.
An important factor in the effective operation of this legislation is how it is monitored. In the Netherlands and
Belgium, review committees which include lawyers, ethicists and doctors monitor the operation of the legislation.
In the Netherlands the percentage of euthanasia cases
reported by doctors is now significantly high, which means
that the Dutch policy has proved successful.
We have observed that policy makers in various countries
are reflecting on our research findings; we receive many
requests for information. As a result, in the long term the
situation in the Netherlands and Belgium will serve as a
basis for the transition to legislation in other countries.
But policy must continue to evolve. For instance, we have
seen that the increasing use of palliative sedation – that
is, the deliberate lowering of the patient’s consciousness
during the final stage of life – is distorting the incidence of
euthanasia. The difference between palliative sedation and
an act of euthanasia can be very small. The legislator must
stay alert. We hope that our research will be of assistance
in that respect.
”
22
Tilburg Research - 2009, volume 6, number 2
The electronic child database
Where is the line between
privacy and safety?
In the electronic child database over a thousand items of data can be
recorded about every child. Its introduction was hotly debated in the media
and in the Dutch parliament, but ultimately it was approved. Supporters and
opponents express their opinions once again. Corien Prins, Professor of Law
& Computerization, tells us what research can contribute.
By Marga van Zundert
Tilburg Research - 2009, volume 6, number 2
Against
State paternalism
For
Digitization
‘It’s really a classic dilemma’, says Senator Heleen
Dupuis. ‘The government wants to curtail autonomy in order to protect the population. But to do that
you need very good arguments. To my great frustration, in the Upper House Minister Rouvoet failed
to answer crucial questions such as ‘What will be
recorded’? ‘Who will update the files’? or ‘How long
will it be kept’? Right from the outset, there has
been no consensus about the facts in this discussion, which means there can be no well-balanced
assessment’.
‘The electronic child database is not a revolution,’
says Jolanda van Boven, legal advisor of the Digital
Database Child Health Care Service. In her view the
database is as a logical transition from paper-based
administration to digital administration, with all the
advantages of the digital era. ‘No more illegible handwriting or lost folders, but a clear and structured file
for each child’.
Senator Dupuis and her party – the VVD – are
fiercely opposed to the electronic child database.
In her opinion this database records too much
privacy-sensitive information about too many children. ‘I hope I’m wrong,’ says Dupuis, ‘but I think
it’s incredibly naive to think that so much sensitive information can be stored securely’. Dupuis
gives an example of privacy-sensitive information
included in the database: people’s parenting styles.
‘The parenting style people choose is a personal
value which the government should not interfere
with. There is no such thing as the best parenting method. Moreover, a parenting style cannot be
registered objectively. What one person regards as
authoritarian, another thinks is a matter of setting
clear limits. I’ve heard that they even ask about parents’ sexual habits – that is of course pure insolence
and state paternalism’.
Security
Dupuis is in favour of a system which does not
entail creating a complete electronic file for every
child. A file should only be set up if there are indications that a child is at risk. ‘To record 1200 items
of data about every single Dutch child in a system
is disproportionate. Ten per cent of children at the
most are at risk, so limit the electronic child database to that group’.
Child health care physician Lucy Arntzenius endorses
this view on the basis of everyday practice. ‘The
electronic child database is a confidential medical
database, and therefore may not be shared with the
police or other government agencies. It is simply the
digitization of my work’. But there are differences in
comparison with paper files, Arntzenius admits. For
instance, it is now easy to analyse anonymized data
at the district or neighbourhood level. How many
mothers breastfeed in a particular area? What is de
composition of the population? ‘I see that as a great
advantage. It means we can identify issues and anticipate them’.
Another difference is the uniformity of the electronic
database. Child health care physician follow the electronic child database, so that they work in a more
structured way than before. Arntzenius does not
think this has changed her work fundamentally, but
she has observed that she has more discussions with
colleagues about the content of their work. ‘For example, we talk about when you tag something as a point
of concern and how. I think this only raises the quality of our work and makes us more professional’.
Turnaround
But isn’t recording 1200 items of data about each child
going very far? Van Boven: ‘I can see a turnaround in
mentality in society. We don’t want to intervene too
late, and this is an instrument which enables you to
identify signals early’. Arntzenius: ‘We don’t record
23
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Tilburg Research - 2009, volume 6, number 2
One important reason for this is that Dupuis thinks
the system is not secure. ‘According to experts a
system like this cannot be protected and it is practically impossible to remove information from it or
to delete a file after the retention period – which is
also very unclear – has expired. I distrust the system, not the child health services or the child health
care physician’.
Dupuis also has serious doubts as to whether the
electronic child database is able to achieve its original objective, namely to prevent another Savanna
case. ‘In its present form the electronic child database is a purely medical file; that would not have
saved Savanna’. Savanna was a three-year-old Dutch
girl who was abused and eventually killed by her
mother. She became a symbol of the danger of scattered information in child care services.
Reference Index
The senator does see the point of the Young People
at Risk Reference Index, a new digital system in
which child health care physicians, the police, teachers and other people can report their concerns about
a certain child. If there are more than two reports,
the care workers involved consult with each other as
to whether action is needed. ‘Obviously we all want
our children to grow up safely and happily. Broadly
speaking I can go along with the Risk Reference
Index, because it doesn’t include all children, only
those who may be at risk’.
Heleen Dupuis is party chairman of the VVD in
the Dutch Upper House and Emeritus Professor of
Medical Ethics (Leiden University).
Tilburg Research - 2009, volume 6, number 2
25
1200 items about any single child, but the database
needs to make it possible for us to record any unusual
detail. If a child of four has pubic hair, that is strange
and I have to be able to record it, that’s why that notorious question is in there. But I would never ask questions
about the parents’ sex life. I do ask, for example, how
they are doing. If any problems emerge, I ask if they
want help. The electronic child database or any other
measures we take will never be able to prevent all cases
like Savanna’s, but before people see absolutely no way
out there may be signals. I always ask “How do you like
being a parent?” Parents respond very openly to that’.
Arntzenius has now been working with the child database for three years and in her consulting room she has
never heard the critical questions or protests which are
highlighted in the media. ‘I turn the computer screen
so that parents can see what I am recording. And when
I make a summary, I first run it past the parents. “Have
I understood correctly that...” This gives parents a
chance to correct what is recorded on the spot’.
Integrity
Van Boven constantly reminds organizations that discipline is essential in using the electronic child database. Paper files can lie around, but so can passwords
and laptops. Van Boven: ‘If staff can log in at home,
of course that’s very convenient and there is no law
against it. But before that point is reached, the organization will need to set up a lot of security guarantees to
prevent abuse or leakage of data’. Arntzenius: ‘I think
with paper files the risks of abuse are underestimated,
but with the electronic database they are overestimated. Ultimately you are dependent on the integrity
of staff. No-one is allowed to take a peek into their
neighbour’s file. We learnt that in regard to paper files
and we’ll have to continue learning it for the electronic
child database’.
Jolanda van Boven is a lawyer and advises the Child
Health Care Service on matters of privacy. Lucy
Arntzenius-Smit is a child health care physician in
Haarlem and a board member of AJN, the association
of doctors who work for the Child Health Care Service.
Current discussions about health care & privacy
• Electronic patient database (EPD) over 300,000 people have lodged objections
• Use of stored body material
body material from 14 million Dutch people is in storage, the rules for using it are unclear
• Privacy in mental health care psychiatrists and psychologists are protesting about
the obligation to report their diagnoses to health
insurers
Corien Prins,
Professor of Law & Computerization:
‘It’s about so much more than privacy’
‘Discussions about new technology such as the electronic
child database are often only about privacy’, sighs Corien
Prins. ‘But privacy is just the tip of the iceberg, there are so
many more implications’. By comparing technologies and
examining them in relation to each other, Prins and her fellow researchers at the Tilburg Institute for Law, Technology
and Society (TILT), are trying to identify and document
these consequences and draw society’s attention to them.
‘Often fierce debates arise about one system’, says Prins,
‘but we’re well on the way to linking all sorts of systems
together technologically. For example, the electronic child
database will later be linked to the electronic patient database, and data from the Reference Index and the police
database Prokid will be recorded in the child database.
Technically databases are separate systems, but in practice
everything is connected. That also means that the person
ultimately responsible disappears from the picture. If you
want something from a system, who should you turn to
and where else have the data ended up in the meantime?’
Another worrying trend Prins has observed as a researcher is that due to technology professional autonomy is
starting to crumble. If there are two reports about a child
in the Reference Index, child welfare has to come into
action. If it doesn’t, the municipal coordinator will be
alerted. Whereas doctors or care workers might decide
on the basis of their own insight and experience to keep
an eye on the situation for a while or solve the problem
informally, now they have to account for themselves professionally. ‘Technology is starting to dictate,’ says Prins,
‘and that is eating away at the autonomy of professional
practitioners, not only in the care sector, but in a wide
variety of fields’.
For more information see www.ddjgz.nl
26
Tilburg Research - 2009, volume 6, number 2
Tilburg Research - 2009, volume 6, number 2
Academic evaluation of
policy may change legislation
“We need different kinds of
research for evidence-based
care”
Name: Roland Friele
Position: Professor of an endowed chair at Tilburg University, Deputy Director of NIVEL
(Netherlands Institute of Health Services Research)
Department: Tranzo, Scientific Centre for Care and Welfare
Research: Sociological aspects of health care legislation
“
It is difficult to ascertain the effects of legislation. There
is rarely a baseline measurement, obviously there is no
control group, and the legislator is not always very clear
about the exact goals of the legislation. Take for instance
legislation intended to increase patient assertiveness. How
can you measure the effect? Fortunately we have research
– conducted by my colleagues at NIVEL – regarding the
numbers of questions patients ask. A low number of questions indicates a more dependent position vis-à-vis the
doctor. It emerged that in recent years patients have been
asking fewer questions than in preceding years. This may
indicate less patient assertiveness.
concerning the right of complaint and the legislation on
safe blood supplies.
Changing regulations does not always have the effects
people expect. Our decision-making system for donor
organs is a good example. Many are in favour of introducing a system whereby explicit consent to donate organs is
no longer required, so that more organs will become available. We compared systems in neighbouring countries,
since it is often suggested in the debate about the donation of organs that those systems are more successful.
It was striking that far more people donate organs in
Belgium than in the Netherlands. We came to the conThe legislator’s task is to identify social problems, find
clusion that it is often the survivors who make the final
solutions to them and design legislation. These days that
decision. The majority of donor organs come from people
legislation is also systematically evaluated. In the health
who die in traffic accidents or after a stroke. In Belgium
care sector a great deal has changed over the past twenty
the number of road deaths is twice as high as in the
years. The legislation has become increasingly ambitious.
Netherlands and that is an important reason for the high
For instance, the recent change to the system had three
number of donor organs. In other words, it is not due to a
goals: to provide higher quality, and at the same time to
make health care more accessible and more affordable. The different consent system, and introducing a different system in the Netherlands will not change much.
effects of the change will only become clear in the long
term.
On the basis of our evaluation the minister can adjust laws
We have now evaluated several Dutch health care Acts and and ensure that policy is implemented more effectively.
For example, a new Act now under preparation is intended
submitted the reports to the health minister. One is the
to provide better safeguards for the rights of patients. The
Medical Treatment Contracts Act, which explicitly states
results of the evaluation of the Right of Complaint Act will
that a patient must give a physician permission for treatbe taken to heart in this new legislation.
ment. We also examined the consequences of the Act
”
27
Name: Carin Rots
Position: Science Practitioner
Department: Tranzo, Academic Workplace for Public Health
Research: Evaluation of preventive interventions for children and youth at risk
“
As a science practitioner I have one leg in practice
and the other in the university. Since 2003 I have been
seconded by the Municipal Health Service (GGD) to
the Public Health Care Academic Workplace run by
Tranzo, Tilburg University’s academic centre for health
care and well-being. It was a very positive step for me,
because at the university I have access to much more scientific knowledge and a network of experts. Vice versa,
I can put knowledge and research questions facing the
Municipal Health Service on the academic agenda.
For my PhD I am looking into ways of combining different kinds of knowledge, so that they can reinforce
and complement each other.I am in favour of broader
research. I myself examined two intervention programmes devised by the Municipal Health Service to see
if they were feasible, if they were accepted by the target
group, if they reached the target group, what the results
were and if they could also be implemented elsewhere
in the Netherlands. One was a programme for health
care provisions for families living in poverty, and the
other for assertive outreach to families with problems
who are otherwise not reached by welfare services. My
research provided a theoretical basis for the programmes
and improved their practical application. We made
manuals to go with them which can now be distributed
more widely, and in collaboration with social services a
national training scheme was developed for the poverty
programme.
Through my bridging role between academic research
and practice I have realized that the two can help each
other a lot. My theoretical and methodological expertise
helps practitioners to write things down and to identify
and document them. Conversely, their knowledge helps
me to get a clear picture of what is actually going on and
where connections can be made to improve service provision. This collaboration is extremely motivating.
Sometimes it can also be tricky: in the academic world
you have to publish and in actual practice the most
important thing is to help the client effectively. These
are two worlds with different norms and professional
standards, with different ways of thinking. I write manuals for practitioners, but I also write academic articles
and am working on a PhD thesis. I have to switch over
completely every time, because otherwise I’ll write
things which will not be understood.
At RIVM (Dutch National Institute for Public Health
and the Environment) they are now working on a quality
mark for interventions, which is intended to stimulate
more research into interventions. But in my opinion this
is impossible without using different kinds of knowledge; different research designs should be used, clients
should be involved, and the knowledge of professional
practitioners should be valued more highly. We still have
a long way to go.
”
28
Tilburg Research - 2009, volume 6, number 2
Tilburg Research - 2009, volume 6, number 2
29
The loveliest hospital
backed by research
The ambition of St Elisabeth’s Hospital in Tilburg is to be the most caring hospital, in short: the loveliest hospital (‘Liefste ziekenhuis’ in Dutch). In recent
years humanity and relationships between patients and carers have been
under strain. But after rationalization and efficiency operations in the health
care sector, the human being behind the patient is due to receive more attention. A five-year programme is expected to result in a hospital which provides
professional loving care. The hospital is developing this programme in conjunction with Tilburg University. The two partners hope to arrive at an evidence-based model which can also be used by other hospitals.
By Tineke Bennema
Rita Arts is a care group manager at
the hospital. She has a lot of experience as a nurse and has been working in the field for a long time. As
a result, she has seen in everyday
practice what has changed over the
years. “The introduction of the new
health care system has meant that
hospital policy and structuring have
focused mainly on administrative
aspects: how can a hospital operate
more rationally, more efficiently,
with higher quality, and also more
economically? Both patients and
health professionals (doctors and
nurses) increasingly came to feel
that attention and human compassion were no longer priorities,
‘Attention and human
compassion are no
longer priorities’
while we think they are important
core values of a hospital.” Patients
feel they are products, that they
are powerless and not taken seriously. Doctors and nurses on the
other hand are always in a hurry
to perform tasks which have to be
completed and tallied within certain
time limits.
Two years ago a discussion arose at
St Elisabeth’s hospital about how to
restore the balance between providing high-quality care in the techno-
logical sense and paying attention
to the patient. Along with care
ethicists at Tilburg University, Rita
Arts devised a way of bringing these
values back among care workers.
Not through courses, not through
top-down methods, but by using
the knowledge and skills that were
already there, but had been overlooked – practical wisdom.
The care workers’ experience was
retrieved by setting up ‘learning
communities’. In a learning community a group of doctors, nurses
and other care workers work for
a few years on a certain theme or
problem which they themselves
think stands in the way of proper
(c) Frank Muller / Hollandse Hoogte
30
Tilburg Research - 2009, volume 6, number 2
Tilburg Research - 2009, volume 6, number 2
market players.”
Kindness, compassion, commitment
and permanency were regarded as
soft and weak. Taking a different
perspective, Van Heijst, Baart and
Vosman think in terms of patience
and loyalty rather than speed and
efficiency. It is difficult to treat care
as a trading commodity because
the exchange relationship between
a dependent individual and a care
worker is not equally balanced.
care. “You should get knowledge
from the professionals themselves
and share that knowledge”, says
Arts. “Awareness of the care professionals’ role in the primary process
is possibly the most important concern. If we talk about it every day, it
will become widely recognized.”
Backed by research
Tilburg University supports the
hospital in its works with learning
communities. ‘Professional loving
care’ is a concept based on evidence
from ten years of academic research.
Three professors are conducting
this research in conjunction with
Associate Professor Dr Carlo Leget
and project leader Dr Gert Olthuis.
Frans Vosman is Professor of
Christian Ethics and Spirituality
and Annelies van Heijst is Professor
of Care Ethics and Caritas at the
Faculty of Humanities. Andries
Baart occupies the endowed chair
of Presence and Care at the same
Faculty. In this team setting they
developed the Tilburg version of
care ethics, partly on the basis
of Catholic care traditions. They
think that a caring attitude and
professional conscientiousness go
together. “It’s not a kind of sauce
we pour over health care,” explains
Baart. “Care ethics is an integrated
approach, moral and relevant. We
are engaged in philosophical care
ethics and reflection.”
Vosman: “Care ethics is essentially
anti-authoritarian, from the bottom
up: you start with practical reality. It
is not to be confused with sociology,
or with behavioural sciences, which
are practice-oriented. The kinds of
issues we focus on are the relationship between the patient’s passivity
and pride, and what the patient’s
illness means in his or her life.
And then we go on to ask whether
patients can be regarded as customers, and care institutions merely as
Theory of presence
One thing that fascinates them is
to examine carefully, by means of
qualitative empirical research, exactly what happens in the relationship
between care workers and patients if
it is nevertheless assumed that that
equality does exist and it is manifested (‘you have to make your own
choices, we provide the information
and we implement decisions’).
This different approach to care
partly builds on Baart’s theory of
presence. Care providers enter into
meaningful relationships with people who are dependent on them and
do so with commitment. Presence
is a key element, and attention paid
to the patient by the care provider is
part of that. Detachment and rationalization are the exact opposite.
A new element in Baart and
Vosman’s work is that they also want
to test this promotion of presence
by means of what they refer to as
transformative research – research
which is qualitative and empirical.
“To some this is anathema,” says
Vosman, “because it is not research
done in a laboratory with fixed
parameters and quantitative results.
But all the same, qualitative empiri-
cal research produces excellent,
objective and universal results.”
They will follow the learning communities closely, for example by
joining participants to work day and
night shifts.
The knowledge acquired in this way
will be spread among other care
providers and disseminated through
conferences, publications and
documentaries. A website, www.
liefziekenhuis.nl, has been set up
where the public can also respond.
On the university website www.zorgethiek.nu scientists are now shedding light on the scientific research
associated with the Professional
Loving Care programme. Several
hospitals and consultancy firms
‘It doesn’t have to be
more expensive’
have already expressed interest in
the Tilburg care concept.
Nevertheless, one does wonder
whether the concept might not prove
to be difficult to handle in practice.
After all, the pressure on medical
and nursing staff is high, because a
fixed level of performance has to be
achieved within fixed budgets. And
now the academics and the management of St Elisabeth’s Hospital want
to demand even more of them. Is it
realistic to apply this Tilburg version
of care ethics? And isn’t it all going
to cost too much?
Instrumental care
“It doesn’t have to be more expensive”, says Annelies van Heijst. “The
crucial thing is to take another look
at what the whole health care sector
31
is actually for. In our country we
don’t want people to suffer unnecessarily. But they do all the same.
Because professionals are fixated
on purely instrumental and technological care, they sometimes add to
people’s suffering. Something that
remains outside the figures is what
goes wrong due to care provided
too hastily, which in fact frequently
results in wrong diagnoses and
incorrect medication. Little attention is paid to who the patient is and
what history he or she has. In the
past the GP and district nurse used
to know people and their circumstances. They provided care on the
basis of relationships. One should
not underestimate the consequences
of the lack of trust in professionals
(because the patient doesn’t get to
know them). It is one reason why
people are more and more often asking for second opinions, which is
of course expensive. It has turned
out that market forces don’t provide
a solution to rising costs in health
care at all. We need a change in
culture.”
In Van Heijst’s experience medical
and nursing staff are keen to work
in a different way. “Most people
who choose to work in care want to
help people, to do something good.
They all say that they get so much
in return. That is the fruit of their
labour and the source of their professional pride. To them, the present
structures feel like a straitjacket.
That’s why I’m optimistic that it
can be changed. Policymakers
and health insurers have already
responded and expressed interest.”
32
Tilburg Research - 2009, volume 6, number 2
Tilburg Research - 2009, volume 6, number 2
33
NEWS
Tranzo and health insurer CZ examine lifestyle interventions
Informal care not realistic
Due to ageing, the demand for care in the Netherlands is
rising. The requirements to be eligible to receive professional
care are becoming increasingly stringent. The government
expects people in society to take care of each other, but is
that realistic? In her PhD thesis Riet Hammen-Poldermans
concludes that it is not.
For the past few months Tranzo, the Scientific Centre for Care
and Welfare at Tilburg University, has been working in tandem
with health insurer CZ at the academic workplace ‘Preventie
verzekerd’. In this collaborative project researchers and
practitioners will join to develop and implement interventions
relating to individual prevention.
In the future people with care needs will more frequently
have to rely on informal care and voluntary carers. Riet
Hammen-Poldermans investigated the extent to which
various generations of ethnically Dutch women and
women from ethnic minorities are aware of this and
whether there is anyone, either inside or outside their
own families, they could turn to for informal care.
Among all the groups of women involved in the study
awareness of the problem turned out to be low. Care
expectations and care obligations within the various
cultural groups seem to be in transition. Within the
migrant groups the increasing number of working
women is having an impact on natural family care. While
the Moluccan group wants to hold on to their traditional
culture of care, among most of the other migrant groups
in the Netherlands ‘Hollandization’ seems to set in in the
third generation.
The government’s expectation that people who are
not related will take care of each other is not realistic,
concludes Hammen. Willingness to help is present in all
the groups, but the care given has to fit in with family and
work obligations. Those requiring care have boundaries
as well: they do not want to end up in a relationship of
dependency. When it comes to assistance with daily
living needs, people prefer professional help. According
to Hammen, in order to deal with labour shortages in
the care sector the government will have to invest in
developing neighbourhood networks and facilitating the
combination of work and care.
CZ and Tranzo are focusing on the development, evaluation
and implementation of lifestyle interventions for individuals
at risk and people with chronic ailments. Now the Ministry
of Health, Welfare and Sport wants to include more
individual prevention in the Health Care Insurance Act,
health insurers have more room to offer their customers
preventive services. The academic workplace ‘Preventie
verzekerd’ concentrates on preventing disease in people
at risk and also on reducing the burden of disease and
preventing diseases which are already present, such as
cardiovascular diseases, chronic respiratory disorders and
diabetes, from becoming worse.
Hospitals undertake very few market-oriented activities
Small hospitals and hospitals which are affected specifically
by patients and much less by the government, are taking more
steps to explore their market environment than others. But
on the whole hospitals are not undertaking much in the way
of market-oriented activities. This is the conclusion drawn
by Anne-Marie Laeven in her PhD thesis 'Een gezonde blik
naar buiten. Een onderzoek naar oorzaken en gevolgen van
marktoriëntatie bij algemene ziekenhuizen' (A Healthy Look
Outside: A Study of Causes and Consequences of Market
Orientation among General Hospitals).
When the Dutch government introduced market forces in
the health care sector in 2005, its objectives were to make
the sector perform better and operate more efficiently,
and to offer patients a wider range of options. Before
then the health care sector had been regulated mainly
by the government. The hospitals now find themselves
in a transitional situation in which the influence of the
government is waning and that of market forces is growing.
Hospitals need to become more oriented towards players in
their market environment.
Laeven developed an instrument to measure market
orientation – the degree to which hospitals are oriented
towards patients, GPs, health insurers, competitors and
health care organizations. It turned out that while the
41 general hospitals she examined have started to turn
their attention to the market, this consisted of gathering
and disseminating information rather than taking action.
Nevertheless, the hospitals think they are more marketoriented than average.
Hospitals are mainly oriented towards tertiary health care
and the government. They negotiate most with health
insurers and their own medical specialists and much less
with patients and patient organizations. Although one of
the objectives of introducing market forces was to increase
patient input, patients still have little influence on the
services provided by a hospital.