Special Section: International Voices 2010

Autonomy, Human Dignity, and the Right to

Healthcare: A Dutch Perspective
MARTIN BUIJSEN

Dutch medical ethics policy is renowned for being highly liberal, due largely to
the Dutch law on euthanasia. The Netherlands is one of the very few countries in
which euthanasia performed by physicians and physician-assisted suicide (PAS)
has been legalized. Acts of euthanasia and PAS go unpunished, provided certain
conditions are fulfilled.
The law on euthanasia came into force in 2001. Its evaluation revealed a number
of misconceptions about the law on the part of the Dutch. For instance, a large
part of the population seems to think that there is a right to euthanasia. The
results prompted the State Secretary for Health, Welfare and Sport to commission
additional research into the practice of euthanasia and provision of palliative care
in the Netherlands.1
Irrespective of the merits of the Dutch law on euthanasia, the way the Dutch
generally perceive it testifies to the importance they attach to the idea of personal
autonomy (or individual self-determination). In fact, Dutch medical ethics policy
in general is profoundly informed by this idea. Recent developments in the
Netherlands cannot be explained without a proper understanding of the key role
it plays.

Autonomy
In the Netherlands, the debate on end-of-life decisions ran a somewhat peculiar
course. Palliative care only drew attention after the law on euthanasia took effect.
The Dutch government itself admitted this when it stated that in 1996—prior to
becoming a frontrunner in 2006—the Netherlands compared rather unfavorably
with other countries as regards the quality of palliative care.2 Prior to 2001, the
debate was more or less dominated by questions relating to the moral and legal
permissibility of euthanasia and PAS. The debate in other countries has run
a very different course. In Belgium, for example, a similar law on euthanasia was
implemented shortly afterward, but within a preexisting culture of extensive
palliative care. Undoubtedly, one of the explanations for this seemingly illogical
order of events is a very specific understanding of the notion of autonomy.
Traditionally, Dutch legal scholars have accepted the principle of personal
autonomy (or individual self-determination) as the dominant principle of healthcare
law. In one of his extremely influential textbooks, the founding father of Dutch
academic healthcare law, Henk Leenen (1929–2002), spoke of ‘‘a right to which every
human being is entitled’’ and of ‘‘an individual and original right not derived from
the state or the community, which has its basis in the free and autonomous human
being to whom dignity is inherent and which merits unconditional respect.’’3

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In speaking of personal autonomy in this manner, cloaking it in such terms,

Leenen suggests that it is a human right. As we will see, however, it is not.
Additionally, autonomy cannot be identified with the dignity inherent to every
human being. It is something quite different.
Leenen had more to say about personal autonomy. It is also ‘‘the right of
everyone to ‘live out’ their own life plan,’’ as well as the right ‘‘to choose one’s
own norms and values with regard to one’s own life, even if these differ from
those generally accepted.’’ In short, it is the right ‘‘to dispose of one’s life in ways
different from those prevailing in society.’’4
Leenen’s ideas about the foundations of health law are quite peculiar. First,
they do not amount to an adequate legal theory. The identification of the
principle of autonomy as the most fundamental principle of health law does
not explain that much, as several Dutch health lawyers have pointed out in the
past.5 In plain words, too many rules governing healthcare are at odds with
the principle. Stressing the importance of patients’ self-awareness and self-
control may very well have been sensible from a policy perspective, especially in
the 1950s and 1960s, when patients’ rights legislation was nonexistent in the
Netherlands, but—from a jurisprudential point of view—upholding the principle
of autonomy as the principle of healthcare law would be unwise.
Second, Leenen seems to have had a very special notion of personal autonomy.
The underlying anthropology is worth exploring. In an exceptionally good
history of ideas, written, as it happens, by current State Secretary Bussemaker
for Health, Welfare and Sport, two kinds of individualism are identified. The
individualism that originated in the Enlightenment emphasizes reason, self-
interest, and individual well-being. It perceives the self as the sum of individual
preferences and collective morals resulting from general will and consent and
appeals primarily to liberty rights. The individualism of the Romantic era, on the
other hand, stresses the importance of sentiment and phrases the self in terms of
uniqueness and authenticity. Man focuses on self-realization, and autonomy is
hard won. Romantic individualism underlines individual morality and is
characterized by an appeal to positive rights. Quite accurately, Bussemaker
prefers to speak of expressive individualism, as opposed to what she calls
utilitarian individualism (i.e., the individualism of the Enlightenment).6
Although it is not difficult to see that Leenen’s ideas on personal autonomy
seem to have a strong affinity with expressive individualism, does the expressive
individualist to whom the dignity is inherent truly merit unconditional respect?

Human Dignity
Although Dutch health lawyers and health ethicists do indeed tend to closely
relate personal autonomy and dignity, human dignity is a different notion
altogether.
It is not personal autonomy but human dignity that underlies all internation-
ally recognized human rights. The preambles of human rights treaties, whether
framed by the United Nations or the Council of Europe, always refer to human
dignity, but never mention autonomy or self-determination. As regards legal
norms, human rights—all human rights—are designed to promote respect for
human dignity. Legal literature refers to human dignity as ‘‘inviolable and
inalienable dignity,’’ which is ‘‘inherent to the existence of human beings.’’

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Furthermore, it is not ‘‘the product of convention’’ nor is it ‘‘a consequence of

the recognition by others.’’ Respect for human dignity is said to be completely
independent of any factual reciprocity. Human beings can claim it as an
innate right.7
But what exactly is human dignity? Human dignity is attributed to individual
human beings as well. That much can be said. In and of itself, however, the
concept does not lend itself to definition. Human dignity is an open concept. The
meaning of human dignity varies with the development of the apparatus of
human rights protection. Those who are unable to resist the temptation to define
always shed light on just one aspect: the aspect they consider most important. In
a way, they expose themselves morally.
Although definition is impossible, description is not. When asked to give the
precise meaning of human dignity, every jurist can do little else than quote
extensively from legal sources that address human rights. In general, the only
accurate description of the meaning of human dignity consists of the entire body
of human rights (universal, indivisible, interdependent, and interconnected,
according to human rights doctrine) insofar as it is part of the legal system.
Furthermore, every lawyer is capable of indicating if and when human dignity is
not respected. Dignity is not respected if one or more of someone’s human rights
are violated. When an individual experiences discrimination, when someone is
denied freedom of speech, or when someone’s privacy is violated, human dignity
is not respected. The same holds true if someone is deprived of an education or is
denied access to healthcare. As far as human dignity is concerned, the violation
of a social right is no less an offense than the violation of a liberty right.

The Right to Healthcare

The Netherlands is party to several human rights treaties, which not only lay
down liberty rights but also social rights. In the Netherlands, a certain outlook on
the latter traditionally prevails. Dutch law students are made to understand quite
early that liberty rights impose negative obligations on governments, whereas
social rights involve positive obligations. In this view, the latter also only involve
‘‘soft’’ government obligations. Liberty rights on the other hand entail ‘‘hard’’
obligations.
In the Netherlands, social rights are not considered enforceable. In the courts,
the ability to appeal to human rights protected by the Constitution or in-
ternational treaties is limited. The Dutch Constitution does not allow courts to
review laws with respect to their constitutionality. The Netherlands does not
have a constitutional court. In addition, the Constitution also limits the direct
impact of provisions of human rights treaties to classical rights. As a result,
individual Dutch citizens cannot appeal directly to social rights in Dutch courts
of law. Unless applied in terms of national laws, these rights are virtually
meaningless as regards enforceability. On the whole, human social rights in the
Netherlands are generally regarded as somewhat second-rate.
This view on human rights lacks subtlety. First, liberty rights can and do
impose positive obligations on governments as well. The Dutch government has
to do a great deal to ensure the privacy of its citizens. It has to legislate, create
a supervisory agency, enforce rules, and so forth. Social rights on their part can
and do impose negative obligations. In General Comment No. 14, the authoritative

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interpretation of Article 12 of the International Covenant on Economic, Social and

Cultural Rights, the supervising committee recognizes an entirely different series
of state obligations. The committee differentiates between ‘‘obligations to re-
spect,’’ ‘‘obligations to protect,’’ ‘‘obligations to facilitate,’’ ‘‘obligations to pro-
vide,’’ and ‘‘obligations to promote.’’8 Article 12 of the Covenant provides for
‘‘the right of everyone to the enjoyment of the highest attainable standard of
health.’’9 This ‘‘right to health’’ includes access to healthcare. The very first
obligation imposed on governments by this social right happens to be an
obligation to respect: the obligation to refrain ‘‘from denying or limiting equal
access for all persons, including prisoners or detainees, minorities, asylum
seekers and illegal immigrants, to preventive, curative and palliative services.’’10
The first obligation imposed by the social right protected by Article 12 is therefore
a negative obligation.
Second, social human rights are not second-rate. We have already seen that
human dignity is attributed to individual human beings. Social rights are
therefore accorded to individuals as well. Social human rights do not differ
from liberty rights in that respect. Furthermore, enforceability and force of law
are two very different things. Reducing force of law to enforceability would be
the same as reducing morality to the chance of being caught. Although the Dutch
Constitution virtually denies the enforceability of social rights, this has no
bearing at all on the legal force of the state obligations imposed by these rights.
Their lack of enforceability does not in any way detract from their status as
obligations imposed on the state. Seen from that perspective, social rights—
including the right to healthcare—are as important as any liberty right.

Again: Autonomy and Dignity

Although autonomy must not be confused with dignity, it undoubtedly cannot be
treated separately. As we have seen, however, the notion of autonomy can be
based on very different anthropologies.
In the explanatory memorandum attached to her recommendations on the
protection of the human rights and dignity of the terminally ill and the dying,
special rapporteur Gatterer of the Council of Europe stated that autonomy is
‘‘rooted in [individuals’] inviolable and inalienable dignity.’’11 In contrast to
Leenen, dignity is not rooted in the principle of free and autonomous individuals,
but rather the opposite: autonomy is based on the dignity to which every human
being is entitled. If autonomy originates in the latter, both notions cannot
coincide. Dignity is the all-encompassing concept, implying that dignity is not
the exclusive domain of autonomous individuals, but that newborn children, the
terminally ill, and the dying have a claim to it too.
Gatterer also characterizes autonomy as ‘‘the right to be protected against outside
influences.’’12 This clearly indicates more affinity with utilitarian individualism.
This notion of autonomy is certainly more accurate than Leenen’s. With respect to
healthcare, it indicates that dignity should be understood mindful of the fact that
human beings only have a right to healthcare. Governments have to ensure equal
access to healthcare for everyone; no one is ever under the obligation to receive or
accept care. For the terminally ill and the dying, these notions of autonomy and
dignity imply the right to abstain from further treatment as a means of avoiding
prolonged suffering. More radical views with regard to end-of-life decisions (e.g.,

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the claim of a right to euthanasia and PAS—an idea clearly in line with Leenen’s
thoughts on autonomy and dignity) refute these.

The Drawbacks to Autonomy

The identification of dignity with autonomy can have serious consequences, as
was the case in the Netherlands. It is one thing for academic lawyers to be guilty
of such a mistake but quite another if policymakers and even medical profes-
sionals make it. A few examples will suffice.
In the Netherlands, physicians are naturally bound by professional secrecy.
The adage ‘‘confidentiality is the patient’s right’’—often heard in discussions
about medical confidentiality—is quite telling of the way it is understood by
Dutch physicians. The proverb, however, oversimplifies medical confidentiality.
The physician who feels confidentiality serves the purposes of the patient’s
autonomy, irrespective of how it is understood, is inclined to breach it only with
the latter’s consent. Historically, however, medical confidentiality precedes the
idea of human rights. Medical confidentiality is not the same as informational
privacy. It dates back to at least the days of Hippocrates and facilitates access to
healthcare. Patients need have no qualms in seeking medical help, as the
information provided to the doctor remains with the doctor.
Ultimately, medical confidentiality serves health interests. Justification for
breaching it can only be found in those interests. This explains why Dutch
physicians are legally bound to report occurrences of certain infectious diseases
and why the obligation for medical confidentiality is overridden if it serves the
weightier health interests of a third party. In what is known as a ‘‘conflict of
duties,’’ the physician is simply faced with a more compelling duty than
maintaining confidentiality. In short, the idea of only breaching the obligation
of medical confidentiality with the patient’s consent is blatantly incorrect. Even if
patients explicitly indicate a desire to have confidential information transferred
to third parties, physicians may well decide to remain silent if they suspect that
not maintaining confidentiality is not in the interest of access to healthcare.
A physician may be confronted with duties that are incompatible with
maintaining confidentiality. In conflicts of duties, the obligation of confidentiality
should not be disregarded easily. There are conditions to be fulfilled. The
physician must have done everything possible to obtain patient consent. Doing
so would overcome the conflict. Maintaining confidentiality would result in
serious injury to a third party. Preventing or reducing the harm caused in
breaching this obligation is the only option; doing so may, in fact, prevent injury
or reduce the harm. Finally, the information provided must be limited to that
which is necessary: confidentiality must be maintained as much as possible.
Because of the importance attached to autonomy, Dutch physicians have lost
sight of the rationale of their professional obligations regarding confidentiality. As
a consequence, they tend to take up an excessively defensive position in situations
involving conflicts of duties. The questions they should ask themselves rarely
come up, with very serious consequences, particularly in cases of child abuse.
In the Netherlands, approximately 100,000 children fall victim to abuse each
year. Furthermore, only a very small number of cases of suspected child abuse
(2%) are reported by general practitioners and pediatricians. Over the past few
years, both the government and the medical profession have come to the

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realization that—because of misconceptions with regard to medical confidentiality—

too many abused children have been denied access to healthcare for too long. It was
only in 2008 that the Royal Dutch Medical Association finally issued more balanced
guidelines. Medical practitioners who suspect abuse are now required to contact
staff of special hotlines and, if their concerns persist, are obliged to make an official
report.13
Another drawback in the Netherlands is the resulting acute shortage of donor
organs. On May 1, 2008, 1,319 patients were on transplant waiting lists. These
patients often face life-threatening circumstances. In 2007, 152 people died while
waiting. Fifty patients were removed from the lists because their condition had
deteriorated to the point that a transplant was no longer feasible. The 729 patients
who did have an operation in 2007 waited 4 years on average for a donor kidney
(1 year for other organs). However, not everyone who is medically fit enough to
undergo a transplant operation is placed on the waiting lists because of the acute
shortage of donor organs.14
At the same time, the Netherlands is one of the few European countries—
together with Germany and the United Kingdom—that continues to maintain the
principle of ‘‘opting in.’’15 As countries with ‘‘opting out’’ systems tend to have
shorter waiting lists for postmortem organ transplants, experts have repeatedly
urged the Dutch government to consider a change in regime. In 2008, however,
the government once again rejected the idea, arguing that explicit consent is most
consistent with the idea of self-determination. Once again, it failed to take human
rights into account. Treaty law does not favor a particular transplant system.
Parties to the appropriate treaties, framed within the Council of Europe, are free
in their choice of system. They are only bound to respect the provisions of those
treaties. These provisions see not only to the protection of specific liberty rights
but also to access to healthcare. For this reason, the system generating the most
postmortem donor organs while respecting applicable liberty rights is arguably
most consistent with international human rights law and the idea of human
dignity. ‘‘Opting out’’ systems do not violate liberty rights, but apparently do
result in shorter waiting lists.16
Of course, the problem of long waiting lists remains unresolved. Holding on to
the principle of personal autonomy has led to peculiar social debates. Finding
solutions to the problem, while adhering to the principle of personal autonomy at
the same time, automatically leads to thinking about ways of influencing people’s
choices. All manner of incentives, financial and otherwise, have been suggested,
including discounts for funeral insurance for those who register as postmortem
organ donors, exemption for living donors from paying compulsory healthcare
insurance premiums, and preferential treatment in allocating organs to registered
postmortem donors. Organ trafficking has even been considered seriously.
Although these proposals fit the logic of autonomy, each and every one patently
conflicts with the liberty rights laid down in Council of Europe treaties on human
rights.17 In other words, they are inconsistent with the idea of human dignity.
Fortunately—and quite out of character—the Dutch government has rejected
them as well.
Perfectly fitting the logic of autonomy is the new system of healthcare the
Netherlands introduced on January 1, 2006. Known as a ‘‘consumer-driven
system,’’ this regime is in fact run by a handful of private healthcare insurance
companies, competing with each other on the market for compulsory healthcare

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insurances. Market forces are also introduced in healthcare procurement. Health-

care providers compete with each other for contracts with the insurers. The new
system is meant to improve quality and reduce costs. Ultimately, the reform is
designed to bring about a financially sustainable healthcare system: a system able
to withstand anticipated demographic and economic developments.
It comes at a price, however. Although the new system provides for solidarity
up to a point, market forces introduce a different idea of justice. According to
international human rights law, access to healthcare needs to be equitable. Article 3
of the European Convention on Human Rights and Biomedicine in particular
incorporates very specific notions of justice and equal treatment. In healthcare,
differences in treatment are permitted, but only if they can be justified by
differences in need (i.e., objective need: need for healthcare determined on the
basis of accepted medical criteria). Distribution of healthcare using other criteria
amounts to unjustifiable unequal treatment (discrimination). For this reason,
according to Article 3 of the Convention on Human Rights and Biomedicine, the
adage in healthcare seems to be ‘‘to each according to need.’’
The new Dutch system seems to abandon this principle. The law encourages
behavior that brings about differences in treatment that cannot be justified. In the
Netherlands, access to healthcare increasingly depends on factors other than
medical condition. Access to information (e.g., about the quality of services
provided by the insurer, about the quality of the services provided by the
contracted provider, about the current and future health of the applicant), ability
to choose, socioeconomic status, and income increasingly matter. ‘‘To each
according to need’’ is gradually being replaced by ‘‘to each according to merit.’’18
Recently, incidents of queue jumping led to public outrage. Some Dutch
healthcare providers accept payments by employers to offer their employees
preferential treatment. Other providers have been contracted exclusively by
healthcare insurance companies so that their policy holders do not have to wait
for treatment. The contracts concerned see to necessary care, not to what is
sometimes referred to as luxury care. Of course, discrimination is also at odds
with international human rights law and is an affront to human dignity.19

Final Remarks
On September 17, 2007, the State Secretary for Health, Welfare and Sport
published a document in which she outlined future medical ethics policies. She
opened the letter to the Dutch Parliament by identifying human dignity as the
guiding principle. She also stressed the importance of treaties such as the
Convention on Human Rights and Biomedicine.20 Few have noticed the signi-
ficance of these statements, but they do seem to indicate a more fundamental shift
in Dutch medical ethics policymaking. The value of autonomy as a basic principle
is not in question. But overemphasizing autonomy in the context of healthcare
can come at the expense of the right to healthcare itself. It is to be hoped that the
policy document marks the beginning of a more balanced approach to issues in
medical ethics in the Netherlands.

Notes
1. Kamerstukken II [Parliamentary Proceedings]. 2007/08, 31 036, nr. 2.

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2. Speech by the Dutch State Secretary for Health, Welfare and Sport, held on 1 November 2006,
available at http://www.minvws.nl/toespraken/cz/2006 (last accessed 15 Jan 2009).
3. Leenen HJJ. Handboek gezondheidsrecht. Deel 1. Rechten van de mens in de gezondheidszorg [Textbook
on Healthlaw. Part 1, Human rights in healthcare], 3rd ed. Alphen a/d Rijn: Samsom; 1994:3.
4. See note 3, Leenen 1994:31–2.
5. Sluyters B. Geknipt verband. Deventer: Kluwer; 1985:16–22; Buijsen MAJM. Autonomie in het
gezondheidsrecht [Autonomy in healthlaw]. Ars Aequi 2004;6:425–9.
6. Bussemaker M. Betwiste zelfstandigheid. Individualisering, sekse en verzorgingsstaat [Autonomy
Disputed. Individualization, gender, and the welfare state]. Amsterdam: SUA; 1993:28–9.
7. See, for instance, Council of Europe, Protection of the human rights and dignity of the terminally
ill and dying. Report to the Social, Health and Family Affairs Committee of the Parliamentary
Assembly 21 May 1999 (Doc. 8421), para. 2–5.
8. CESCR (Committee on Economic, Social and Cultural Rights). General Comment No. 14. In: Note
by the Secretariat, Compilation of General Comments and General Recommendations adopted by Human
Rights Treaty Bodies; 2004. UN Doc HRI/GEN/1/Rev.7, para. 33.
9. International Covenant on Economic, Social and Cultural Rights (adopted 16 Dec 1966, entered
into force 3 Jan 1976) 993 UNTS 3 (ICESCR).
10. See note 8, CESCR 2004:para. 34, 43.
11. See note 7, Council of Europe 1999:para. 19.
12. See note 7, Council of Europe 1999:para. 19.
13. KNMG. Artsen en kindermishandeling. Meldcode en stappenplan [Physicians and Child Abuse.
Reporting procedure]. Utrecht: KNMG; 2008.
14. Coördinatiegroep Orgaandonatie. Masterplan orgaandonatie [Master Plan Organ Donation]. De
vrijblijvendheid voorbij. The Hague: Ministerie van VWS; 2008.
15. Nys H. European biolaw in the making: The example of the rules governing the removal of organs
from deceased persons in the EU member states. In: Gastmans C, Dierickx K, Nys H, Schotsmans
P, eds. New Pathways for European Bioethics. Antwerpen/Oxford: Intersentia; 2007:176.
16. Akveld JEM, Buijsen MAJM. Een juridische verkenning inzake alternatieve beslissystemenrondom
orgaandonatie en inzake financiële incentives. The Hague: Ministerie van VWS; 2008.
17. Convention for the Protection of Human Rights and Dignity of the Human Being with regard to
the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (signed
April 4, 1997, entered into force December 1, 1999) ETS 164. See also Additional Protocol to the
Convention on Human Rights and Biomedicine concerning Transplantation of Organs and Tissues
of Human Origin (signed January 24, 2002, entered into force May 1, 2006) ETS 186.
18. Buijsen MAJM. The meaning of ‘‘Justice’’ in health care. Medicine and Law 2008;3:535–546.
19. Buijsen MAJM. Politiek is zelf schuldig aan discriminatie in de zorg. De Volkskrant 2008 20 Nov.
20. See note 1, Kamerstukken II 2007/08, XVI, nr. 126.

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