Since
January 1998, when the new Health Act came in force, Hungarian citizens have a
legal right to informed consent. That is, medical intervention must not be
applied to an individual,
unless he[i] has given consent to it on the basis of appropriate
information. However, medical failure litigation that in tragic cases becomes
widely publicized and shocks public opinion, makes it clear that, usually, the
patient is not provided with appropriate information. Polls and complaints
invariably point to the same direction: the main issue that burdens the
physician-patient relationship consists in an absence of information.
My research
paper is addressed to the problem of informed consent in the Hungarian health
care system. I will ask the question, how much the principle of informed
consent can be said to be an effective part of medical practices; what are the
factors working against it, and how well the institutions designed for its
protection do work.
An
introductory section will briefly address the characteristics of the Hungarian
health care system, the nature and the outcome of the attempts at reforming it,
and the main indicators of the general health status of the population. The
question of equality of access to health care will also be explored.
The main
sections of the paper will raise the question, what are the issues relevant for
informed consent policy that gave rise to vigorous public discussion (e.g.,
that of HIV testing and treatment, of reproductive procedures, and of
palliative care), and how much the legal and political debate was able to
contribute to an adoption of rules and practices that help to handle conflict
situations in conformity with personal self-determination.
1.
Health Care Reform in Hungary
According
to the constitution of the Hungarian Republic and the Health Act in force,
patients are entitled to an access without discrimination to medical services
that are adequate to their health status.
Every
patient has the right to treatment that is justified by his state of health.
Uninterrupted access to treatment has to be ensured, treatment has to be of
appropriate professional standard and to be provided without discrimination.
The
right to health care imposes the following duties on the state:
-
everybody
is entitled to life-saving care or one that prevents serious or lasting injury,
and the right to such care may not be restricted;
-
a
patient always has the right to receive analgesic;
-
every
patient has the right to treatment that is justified by his state of health and
complies professional and ethical rules;
-
a
patient has the right of freedom of choice of a doctor ((Act CLIV of 1997, the
Health
Act).
But there
is a tension between the declared right to health care and the capabilities of
the health care system inherited from the old regime. There is wide agreement
that the health care system needs a thoroughgoing reform. Many do believe that
such a reform must include the establishment of competitive health insurance
firms, differentiation of medical services according to the type of insurance,
and privatization of health care institutions.
The reason
is this. Nationalized health care systems lack institutions of efficient
allocation of medical resources. They rely on such indicators as the use of
hospital beds which stimulate a maximum use of resources. They do not
distinguish between contribution paying patients and those who do not pay at
all. Thus, they tend to generate deficits that must be covered from the tax
payers' money.
Notwithstanding
of the exacerbation of the tensions due to the above phenomena, no democratic
government was willing or able to come to the fore with a program of reforming
the Hungarian health care system as a whole. The only significant change implemented
since 1990 consists in an offer to General Practicioners to privatize their own
services. G.P.-s now are working on their own account, their activity being
covered by the National Health Insurance (NHI). No initiative has been taken
int he direction of the establishment of a modern health insurance system.
Attempts at hospital privatization were frustrated already at the stage of
legislation.
1.1
Constitutional Challenge of the Hospital Act
The Parliament,
dominated by a majority of the Socialists and Liberals, adopted a law ont he
privatization of certain health care center sin the Summer of 2004. The
President of the Republic refused to sign the law and, instead, he sent it back
to the Parliament for deliberation. Rather than opening a new round of
discussion on the President's points, the majority has immediately put the text
on a revote, and passed the law a second time.
A group of
opposition MPs filed a petition with the Constitutional Court, claiming that
the procedure of adopting the law without any deliberation was
unconstitutional. The Court endorsed their claim, and struck down the law on
this formal ground.
Although
the CC ruling refrained from criticizing the law on substantive grounds, the
majority, intimidated and divided, failed to come forward with a new piece of
legislation, and the issue of privatization fell into olivion.
Sources:
Protocols
of the Parliamentary discussion of the Hospital Bill
Protocols
of the discussion of the Hospital Bill int he Health Care Committee of the
Parliament
Motion of
the President of the Republic
Ruling of
the CC
1.2. The
Directed Health Care Provision System
DHCPS
started in Hungary as a model experiment in 1999. At its start, it affected 150
thousand patients. In 2004, the number of patients involved was up to 1.9
million. The essence of this system is that it inserts a new actor, called the
organizer, between the General Practitioners and the NHI. The organizer is
supposed to take care of "more efficient" health care provision, and to inform
the population on the available prevention programs. Health care providers were
selected to participate in the experiment on a competitive basis. At this
experimental stage, the role of the organizers was delegated to some of the
health care providers themselves, so these people are expected to act both as health
care providers and as organizers. The NHI allocates resources to organizers on
the basis of the number of patients in their jurisdiction. The organizers
fulfill a variety of tasks: they are responsible for making the patients'
movement more rational, they prepare professional protocols of provision, in
co-operation with the physicians in their jurisdiction, they establish training
programs for GPs, they collect and analyze information – in other words, they
are doing things that no other actor of the system does in any methodical way.
But the workings of the DHCPS raised serious
problems.
1.2.1. Doubts as to Data Handling within the
DHCPS
The Parliamentary Commissioner for Data
Protection engaged in an inquiry into the DHCPS, and raised serious doubts as
to its compliance with the constitutional principles of protecting sensitive
personal data. His main objection was that patients' sensitive personal data that
require special protection, become accessible for persons not directly involved
with medical treatment. Such an access to sensitive personal data has no legal
basis, nor is it regulated by law and, therefore, it is unconstitutional. On
this grounds, the Commissioner demanded that the model experiment is cancelled.
Source: PCDP Statement no
1336/J/2004.
1.2.2.
Criticisms Based on Patients' Rights
Civil
liberties and patients' rights groups expressed worries from a somewhat
different perspective. Their criticism targeted the DHCPS for the following
feature of it: Suppose the organizer assigns a patient belonging to his
jurisdiction to a particular medical expert. Then, if the patient chooses to
consult a different medical expert instead, he is not eligible for NHI coverage.
This rule stands in conflict with the principle of free choice of a health care
provider, civil liberties and patients' rights groups claimed.
1.2.3
Report of the State Audit Office
The
State Audit Office carried out an investigation into the efficacy of the DHCPS
in 1991-2004. Its report, published in March 2005 (Report n°0508) made a harsh
judgement on the model experiment against cost-benefit criteria. It judged the
inclusion of organizers unnecessary, and the whole system highly expensive.
According to it, rather than contributing to savings, the system generated
addition costs.
On
the grouds of this report, the Government decided to abandon the whole
experiment, although the Budget for 2005 has already foreseen 2.5 million patients
to be included in it.
1.3
Inequality of Access to Health Care Provision
The
Ministry of Health commissioned an empirical study at a private consulting firm
on the access of economically, geographically, and ethnically disadvantaged
groups to basic health care provision. Already in the research stage, the study
provoked a passionate public controversy and, as a consequence, the results
have never been made publicly accessible. The reason why the study became so
controversial was that its questionaire wanted to test the racial prejudices of
the medical community against the romas. The chamber of General Practitioners
immediately reacted and, following its reaction, the issue received high public
attention. The Ministry took a defensive position, tried to distance itself
from the study, and to evade further attacks by not making the results public.
A
core claim of the study holds that the (mainly roma) communities living in the
poor areas of Eastern Hungary have a significantly lower access to basic health
care than those living in other regions. The patient/physician ration is
unusually high, and many physician's jobs remain vacant. The study suggests
that a special program, providing privileged incentives for basic health care
providers, is to be started to deal with the problems of the region in
question.
It is
against the background of these observations concerning the state of the health
care system in post-Communist Hungary that I would like to address the issue of
informed consent.
2. An
Examination of the Institution of Informed Consent
2.1. Ont he
Social Recognition of the Medical Profession
Research on
the recognition of various social groups in Hungary invariably puts the
professional group of physicians to the top of the list. A similar result is
provided by the GFK Custom Research Worldwide's 2005 research done in 18
European countries. The rating of many important groups, such as politicians,
for example, is almost uniformly low across these countries. Some professions,
however, command a high GFK Trust Index. In all the 18 European countries (as
well as the US) physicians and teachers are consider as the most trustworthy
(their GFK index being 3.2). 84 per cent of the respondents said they trust
physicians, and 82 per cent said the same about teachers.
Source:
GFK Custom Research
Worldwide, Trust Index, 2005.
Int he case
of Hungary, we have strong reasons to find this phenomenon highly interesting.
This is because the general level of health care provision is ways below the
social expectations – a fact publicly discussed even by the medical profession.
A further fact that makes the physicians' exceptional trust index subject to
questions is that the access to (good) provision depends on direct, illegal
payment to the physician – an obvious symptom of corruption which demoralizes
the physician-patient relationship. But the phenomenon becomes easier to
interpret if we take into consideration the high rate of those patients who
willingly waiver their right to information and leave the decision concerning
their treatment and medication to their physician. My assumption is that the
high trust index of the physicians reflects the circumstance that they are in
charge of a service, very important for the quality and duration of life of the
patients, which the latter see as both involving great risks and being, at the
same time, beyond their comprehension. In other words, the high trust index of
the physicians is not related to good experiences with them but to paternalism
and to an escape from taking responsibility. My research will provide an
analysis of this phenomenon, based on a discussion of studies in patients'
attitudes.
2.2. Information
on Institutions of Health Care Provision
As a next
step, I will try to give an account on the state of information the system
provides to the patients: information on health care providing institutions,
and information on treatment.
The issue
of information on health care providing institutions is this: patients need
information on how reliably various different institutions work in general, and
how reliable are the particular physicians in dealing with their illness.
The NHI
published, in March 2005, on its website a rating list of Hungarian hospitals. The
list is coded so that the general public is not in a position to find out which
rating is assigned to which particular hospital. Only the institutional leaders
themselves are able to uncode the information. The only parameter against which
the list has been established is the recovery rate, hospital by hospital, of
patients hit by cardial attack. Even int he absence of any uncoding device, the
list makes it very clear that patients in a country town hospital have the
lowest chance to survive, those in the hospitals managed at the level of
regional centers and the capital having somewhat better chances while those in
national clinics having the best prospects. In 2004, every fifth patient who
suffered cardial attack died if he was treated in a country town hospital;
every sixth of them died in hospitals managed at the level of regional centers,
and every seventh died in a clinic associated to a (national) medical school.
The
Parliamentary Commissioner on Civil Rights made a statement to the effect that
people have the right to know the quality of health care they can expect to be
provided to them in various different institutions. But the NHI refused to
uncode the list.
Even
so, the Alliance of Hospitals threatened with litigation those who prepared and
published the list, on grounds of “damage to reputation". It didn't come to the
trial, however, because the NHI behaved itself very defensively, and stopped
publishing data on the performance of health care institutions.
2.3.
Information on Medical Treatment
The
Health Care Act adopted in 1997 provides for a Patients' Rights Representative
for each hospital. The PRRs have their mandate and salary from the Government.
Their yearly reports testify for the fact that of all the rights of the
patient, it is the right to informed consent which remains most systematically
ignored and violated.
Also,
the Parliamentary Commissioner on Civil Rights identified, in his report on a
general inquiry concerning the state of the rights of the patient, the failure
to provide patients with the requisite information and humiliating treatment as
the two most significant rights violations done by health care institutions. He
suggested that teaching knowledge and skills related to informing patients be
included int he curriculum of medical schools.
The
Hungarian Civil Liberties Union conducted an inquiry on he status of patients'
rights in medical institutions in 2002. Their report points to the absence of
written information materials as one of the most important deficiencies of the
system. Such materials are not to be found even when their availability is
required by law. (For example, psychiatric centers are required to provide the
patient with written information about his rights, particularly in case of a
procedure of civil commitment.)
GFK
Hungary Custom Research Center, in an inquiry made in April 2004, has put the
question, whether the physician offered his patient the choice between
alternative drugs. 72 per cent of the respondents said 'no', only 28 per cent
answering 'yes'.
The
desire to be informed varies most significantly with age and schooling.
Somewhat more than one third of the adult population claim they have a right to
know what are the available alternative drugs. A further 9 per cent claim it is
very important for them to know the price of the drugs because they would like
to take their decision accordingly.
One
third of the respondents claim they do not want to have information ont he
available drugs because they trust their physician "who knows what is best for
me". 14 per cent fails to ask questions on alternative drugs because "I
wouldn't be able to decide anyway".
Respondents
of the age group 20-49 year display an above-average propensity to stand by
their right to know the alternative drugs and therapies. The youngest (those
between 15 and 19) and the eldest (those at 60 or more) are, however,
represented above the average in the group of those who say they don't need any
information, given that they are unable to decide anyway.
Source:
GFK Hungary Custom Research Center, Inquiry on Drug Use, April 2004.
3.
Special Domains of Autonomy and Self-Determination
3.1. On the
Rights of the Chronically and the Terminally Ill People
The Deputy Commissioner
for Civil Rights conducted a research in 2003 on the question, whether and how
much the right to human dignity is respected when it comes to the chronically
and the terminally ill. His main questions were, whether such people have the
opportunity to choose the way they are treated, whether they have the liberty
and power to refuse life-sustaining treatment, and whether they are provided
with adequate pain relief.
In his
March 2004 report to the Parliament, the Deputy Commissioner complained that
hospitals refused to provide him with the patients' medical files which he
would have needed in order to be able to follow the treatment process and the
legal statements made by the patients concerning their treatment. Ironically,
the Commissioner for Data Protection, took the position which, then, became the
dominant one, that a Parliamentary Commissioner is not permitted to see the
medical files o fan individual patient unless his inquiry is based ont he
complaint of the very same patient.
This
statement, if it becomes the legal policy in force, will prevent the
Parliamentary Commissoner's Office or any other public body from conducting
systematic research into the state of the rights of the chronically or
terminally ill. This is because there is no other source which they could draw
on concerning the treatment applied, the state of the patient, and his position
concerning life-sustaining treatments.
3.2. On the
Availability of Palliative Care
In a ruling
on euthanasia (decision no22/2003 (IV.28.) the Constitutional Court
stated that the recognition of voluntary active euthanasia depends, for its
constitutionality, on certain conditions, including the availability of
effective pain relief and palliative care. Unless such conditions are met, so
the Court, there is the danger that the patient's reason for asking for a
physician's assistance to terminating his life not because of a desire to end
his life but because of an absence of humane treatment.
This ruling
served as a starting point for human rights and patients' organizations to
initiate a parliamentary investigation into the state of palliative care in
Hungary in 2004. The inquiry resulted in important observations. First, the
physicians' training fails to provide knowledge on modern methods of pain
relief. Second, institutions of pallative care/hospice are almost completely
absent. The report on this inquiry had tangible effects. Medical schools
introduced a course on pain relief, and the NHI decided to support a model
experiment to establish hospice beds in hospitals.
3.3. Anonymous
HIV Screening
A
group of experts of the WHO Regional Office for Europe conducted an external
review of the Hungarian AIDS policy during June-July 1995. The review team
compiled a report on their major findings, and added their recommendations.[ii] They judged the mandatory testing regime
imposed by the 1988 Decree of the Minister of Public Health as preventing
access to the group which is most vulnerable to the danger of HIV/AIDS and, at
the same time, the hardest to reach.[iii] The
Report argued that the policy of mandatory testing is utterly
counterproductive: "[M]andatory testing of a variety of population groups
is in conflict with the public health approach to the prevention and control of
HIV."[iv] The
recommendations attached to the Report urged for a revision of the regulation
on compulsory testing, and the replacing of it "by accessible testing
services based on the principle of voluntary, informed consent and
confidentiality".[v]
The
WHO review board reminded the Hungarian officials that the Decree of 1988 does
not comply with WHO recommendations, and violates international standards, including
human rights norms.[vi]
It
took almost ten years until the Parliament legislated the rules of anonymous
HIV testing. The law providing for free HIV testing for citizens who fail to
disclose their identity was adopted in the Fall of 2003.
But
not even after this date have been testing sites established where personal
data would be handled confidentially, where the treatment would be based on
voluntary co-operation of the patient, and where screening and treatment would
be provided in combination with counseling. In Hungary, the overwhelming
majority of HIV-tests are carried out in veneral diseases clinics and public
health institutes. Traditionally, these institutions base their practice on
coercion: they compel their clients to appear for examination, for contact
tracing, and for medication. Those who fail to abide by the rules are subject
to coercive measures.
Human
rights organizations and individual persons filed petitions with the Data
Protection Commissioner reporting that testing sites continue to stick to the
practice of making the test dependent on a submission of identity card and
social security number. In May-June 2004, co-workers of the Data Protection
Commissioner were showing up at testing sites belonging to public health
institutions in Pest county, to ask for an anonymous screening as ordinary
citizens. Activists of the Hungarian Civil Liberties Union did the same in six
other counties. Ont he basis of their experiences, the Data Protection
Commissioner addressed the Surgeon General with a memorandum telling him that
workers of the test sites have a legal obligation to inform those asking for a
screening that they have a right to an anonymous screening and, that, if they want the
screening to be anonymous, they cannot be required to submit their identity
card or their social security number.
3.4. On
Autonomous Decisions in Reproductive Services
Here is a
sample of the public debates on legal limits of personal self-determination in
this field.
3.4.1. On
child delivery with Caesarian section.
The
proportion of child births with Caesarian section is steeply increasing since
the mid-70s. While 30 years ago 5.5 per cent of all child births proceeded with
Caesarian section, by 2003 this proportion rose to 25 per cent, according to a
report of the College of Hungarian Gynecologists. The same report established,
besides the dramatic rise in aggregate numbers, a wide variation across medical
institutions in the frequency of and reasons for application of Caesarian
section. The report mentions a wide variety of reasons for the shift. One
obvious reason is that the age of the first child delivery moved from 20-24
years to 29 year, and more and more women over 35 decide for giving birth to a
child. At this age, the risks attending child delivery increase significantly,
no doubt about it. Besides, circumstances which are taken as reasons for
proceeding with the Caesarian by the medical profession (e.g., hip stricture or
incidences of premature birth) are also increasing in number. This increase goes
parallelly with a growing preference for prevention. Another factor is the fear
of malpractice litigation (in Hungary, most malpractice trials are initiated
against gynecologists).
A study in
quality assessment conducted by NHI in 2005 also reveals the presence of a wide
variation across medical institutions. While county hospitals and central
clinics perform Caesarian section in line with the national average (although
clinics have a significantly higher-than-average share in hard cases), the
proportion of the Caesarian relative to all cases of child birth is much higher
in the smaller country town hospitals, according to this study. It is also
reported here that, in these smaller hospitals, some gynecologists are
completely specialized on the Caesarian.
This is a
complex issue with widespread ramifications, many of which are independent of
the problem of personal self-determination. But the latter is also involved,
and it was hotly debated. The question is, whether the mother has a right to
the access on demand to a Caesarian. If so, than the mother's request is a
separate reason for performing a Caesarian, one that is available even if all
the medical reasons recognized by the profession of gynecologists are absent.
The legal rules in force do not leave room for such a case. According to them,
if the surgical intervention is not justified by a professionally recognized
medical reason, the request must be rejected.
3.4.2.
On Anonymity of Sperm Donation
The
rules in force do not allow for non-anonymous sperm donations. This regulation
is criticized on the following grounds. The requirement of anonymity has
undesirable implications both at the level of policy and at that of principle.
The policy implication is that the propensity to decide for this form of
assisted procedure is restricted by the fact that the parents cannot obtain
sperm from a close relative. The implication of principle consists in
infringing on the right of the parents to have descendants with a genetic
profile (including physical outlook) closely similar to theirs. A similar
conclusion has been reached by the Commissioner for Civil Rights in a
recommendation submitted to the Parliament.
3.4.3.
On the Choice of the Gender of the Future Child
In
the Summer of 2005, the Hungarian Government asked ten questions to citizens
who were expected to answer those questions via e-mail or SMS. One of the
questions sounded like this: Should couples have a legal right to select the
gender of their third child and of those to be born after this one? The rules
in force in Hungary do not allow for sex selection in any cases other than
those of grave inheritable and gender-dependent diseases. The raising of the
question provoked an intense public debate where geneticists, demographers and
legal experts took part, among others. Ordinary citizens casted their vote in
much higher numbers on the occasion of a political TV program than in a direct
answer to the Government. 17 thousand votes have been registered in this
program. Almost 80 per cent voted against the legal right of sex selection.
3.4.4.
On Surrogate Motherhood
The
1997 Health Act provided for surrogate motherhood. However, the coming into
force of the relevant section of the law was delayed, under the pressure of the
Catholic clergy and, after the rise of the right to government, it was dropped
altogether. When the Socialist-Liberal coalition won the election in 2002, a
new wave of public debate was provoked by a petition of the Hungarian Civil
liberties Union. As a result, the Government committed itself to create an
appropriate legal framework for the procedure, but the promise was not kept. As
things now stand, the opportunity of surrogate motherhood is not available but
to those very few who can afford the financial costs and legal risks of having
access to the necessary medical interventions abroad. According to a
gynecologist's estimation, there are 40-to-50 Hungarian women in a year who,
because their uterus has been removed, cannot have a baby in any other way but with
the help of a surrogate mother.
The
debate was extended to many other aspects of assisted reproduction as well. For
example, single women or same-sex couples are excluded from the access to such
a procedure iven in that highly limited range where the law makes it permissible.
Human rights organizations judged this to be discriminative.