PALLIATIVE CARE VERSUS EUTHANASIA
In this paper1 I will reflect on the question whether good palliative care has an impact on the demand
for euthanasia? Will there be fewer cases of euthanasia if there is sufficient access to professional
palliative care?
The past 25 years I have been working in a hospital for cancer patients which is affiliated with the
Erasmus University Hospital in Rotterdam. Besides my clinical work I’m actively involved in teaching
activities in the field of pain treatment and palliative medicine. In these years I have witnessed an
increase in medical possibilities for palliative care. I have also witnessed how euthanasia developed
in practice before and after the implementation of the so-called Euthanasia Law in 2002.
WHAT EXACTLY IS PALLIATIVE CARE?
What is palliative care? The first association is pain relief; which is indeed an important part. When
we talk about pain, it’s important to differentiate acute and chronic pain. Examples of acute pain
include a broken leg or postoperative pain. Chronic pain – whatever the cause may be – is different.
The presentation differs; instead of pain which is visible from someone’s facial expression, a patient
with chronic pain is often apathetic and feels paralyzed. Furthermore, the patient has few interests in
his environment and might think: “I cannot be helped”. Not only the presentation differs but the
pathophysiology is also different. The nervous system works differently. Some think that patients get
depressed when you show that you are convinced of the seriousness of their condition; when you
say: “That must be awful, how do you carry on?”. The opposite is true. The patient will get a different
perspective – particularly when we explain how we will try to accomplish pain relieve and show the
alternatives if the first approach is not successful. There is not just one way of treating pain since the
causes and presentation of chronic pain can be diverse. Optimal treatment depends on the pain
pattern, which may vary during the day. Furthermore, the relation with the underlying illness is of
particular importance. Pain treatment can be a puzzle at times, but in most cases it is possible to get
relief quickly.
Other problems might be present besides pain: weight loss, intestinal problems, itching, shortness of
breath. Addressing them is also part of palliative care. Besides the physical complaints there may be
other problems. One could have anxiety for possible future events. One could be angry; with the
physician who didn’t refer earlier; with oneself for having caused the cancer by smoking for years…
Concern about children might be present; who will help them keep up their good work at school
once I am gone?
Patient will have to set priorities; ‘What makes your life meaningful? Or what would make it
meaningful again?’ Let us not forget about their neighbors, who are sometimes going through a
rough period. Paying attention to all these aspects is palliative care too.
This approach is much more encompassing than just symptom control. It is much more
comprehensive and customized. Using this approach, the patient is not an object, but a central
person with active input in the decision process. Things to decide include: “Will I die at home?”; “If
1
This paper is adapted from a speech at a hearing in Brussels on 12 November 2014.
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so, how can this be realized?”; “Which arrangements do I need to make?” This is called ‘advance care
planning’. These principles also apply to people with chronic illnesses, such as dementia, heart failure
and chronic lung disease.
Palliative care has a bad image, it is associated with the fact that one will die. Some think it should be
reserved for patients with cancer only. If palliative care would be synonymous with assisted dying,
then the step towards euthanasia becomes small. That would be a mistake, because palliative care is
meant to improve the phase of being terminally ill. It is meant to prevent thoughts like: “I’m not
important anymore, I’m just a burden”.
Palliative care has benefitted much from two international developments. Firstly, it became more
accepted to discuss end-of-life, ending a major taboo. Secondly, there have been major
developments in the modern hospice movement which emerged in England during the same time. It
combined the principle of ‘everybody matters up to and including his or her death’, along with
practical methods for shaping such care.
While palliative care was developed in many countries, it was viewed in The Netherlands as a ‘hobby’
of a minority who couldn’t reconcile themselves with euthanasia as a modern type of assisted dying.
The idea was that euthanasia is straightforward, transparent, testable and politically correct.
Palliative care however would be misleading and – maybe well-meant – letting people die in an
arduous manner.
EARLY EXPERIENCES WITH EUTHANASIA
In the eighties and nineties cautious experiments took place in The Netherlands with small-scale
services where one could stay in the last phase of life. Care was provided by many volunteers. After
2000, some hospitals and nursing homes started small palliative care units. They tried to accomplice
a cultural change. For a long time, palliative care had to fight the image of being soft and nonrealistic.
Education in palliative care has been substandard in The Netherlands for a very long time. In 2001 a
training program for general practitioners started. This is a solid program training 40 new doctors
every two years since the start. This way education is catching up with international standards. This is
of great importance since most patients prefer to die at home. About 70% of patients who die from
cancer, die at home while only 25% die in the hospital. About 5% of patients die in a nursing home
and less than 1% in a hospice.
It is possible for caregivers in The Netherlands to get help from consultative teams. Unfortunately,
the number of requests is disappointingly low. When they are called upon, a crisis situation is often
already in place and the demand for help concerns only the application of palliative sedation. It is
often thought that this plays a role in the high number of euthanasia cases at home. People can bear
a certain extent of suffering, but senseless suffering or suffering which might only get worse without
proper support during exacerbations – makes it unbearable.
Not surprisingly, people fear a painful and upsetting end of life. This is enhanced by the depicted
image of either dying with awful pains and other discomfort or choosing euthanasia.
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When I started working in the cancer clinic in Rotterdam in 1989, euthanasia was being carried out
sparsely – but illegally. In the preceding 15 years – the 1970s and 1980s – the discussion about this
had started. The debate was nurtured by changes in the way of dying. There were great gains in
survival rates for cardiovascular diseases and traffic accidents by improvements in medicine. Longer
survival also imply more discomfort by declining strength, a higher number of deaths in hospitals and
in intensive care units. People began to doubt whether medicine had brought only benefits and
whether it was possible to keep up the respect for life.
After discussing it with their terminally ill patients, some physicians began to give some of them such
an overdose of an anesthetics that the patient passed away immediately. A couple of physicians
provoked lawsuits aiming at a review of this practice but also at influencing public opinion. The
lawsuits against some physicians who practiced euthanasia and made it public resulted in the socalled due ‘diligence requirements’. These requirements for physicians became more and more
decisive for both the medical practice and the legal judgment thereafter. Therefore, one created
rules for euthanizing patients by a physician, also to protect the physician against criminal
prosecution. These rules included that requests must be made voluntarily, should concern an
incurable disease causing unbearable suffering and it should be a terminal illness. The debate about
it went further and further driven by poignant situations of patients who demanded an end to their
lives, family members who addressed the request or a physician who did so. Surveys showed broad
support for actively ending somebody’s life in such cases. People who voiced a contrary opinion were
qualified as ‘unmerciful’. By no means were all of these people who expressed their hesitation from
the traditional group of opponents. There were, for example, physicians who acted as consultantphysicians in cases of euthanasia who declared that they had second thought and may have acted
differently. “If I knew then what I know now…”.
SITUATION AFTER IMPLEMENTATION OF THE EU THANASIA LAW
The 2002 Euthanasia Law was therefore mainly a confirmation of the established practice and was
related to the desire to settle the issue as far as possible. In order to prevent misconduct, attempts
were made to organize it in a transparent way, based on the above mentioned diligence
requirements. In addition, a case review afterwards was added in the procedure. Formally
euthanasia is not legalized, but the perception in The Netherlands is totally different.
Since then there has been an explosion in the number of cases. The number of euthanasia cases
were stable around 1800 cases a year before introduction of the euthanasia law. This rose by 15%
annually during the last years, from 2006 onwards. There are now almost 5000 cases a year.
This rise causes discussion which is parried by both the authorities and the Dutch Medical Association
by stating that it is not unexpected, that there is no ‘slippery slope’ and that it’s within the extent of
the law.
There are, however, many questions:
This rise can be compared to that in another country which also had a liberal legislation concerning
euthanasia, the liberal state of Oregon in the USA. It has had such a scheme for some time, but
nevertheless there were 71 physician-assisted deaths last year. Compared with the number of people
who passed away the number of euthanasia cases in The Netherlands is 16 times higher and rising.
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Euthanasia has become a normal or almost standard way of dying for patients with cancer. It has
become common practice instead of an emergency situation.
In The Netherlands there are advisors for physicians who receive a euthanasia request, namely
independent expert physicians. These expert physicians show retracting movements, because many
choose this position out of compassion with those who really had a difficult dying process. They are
now confronted with a desire for euthanasia on the basis of suffering which they cannot characterize
as unbearable. Furthermore, sometimes there seems to be pressure from the family. Physicians
often feel this pressure with regard to palliative sedation as well. Many physicians are unhappy with
the recent developments, they are generally more conservative than some TV-programs suggest.
The existence of a ‘slippery slope’ is not shown primarily by the overall figures, but even more by the
shift in indications. The Review Committees play a role in this shift, because they qualify cases with
new indications as “due care” while in fact they require a new consideration or weighing by the
lawmaker.
The tendency has become that “being finished with life” should serve as an indication for euthanasia.
This means that elderly over 70 years of age who have a death wish but do not experience
‘unbearable suffering’ according to the original intend of the law, should be able to get assisted
suicide. This happens in hundreds of cases each year. To keep it within the medical terms of the law
they talk of ‘a sum of age-related complaints’. There is discussion about what ‘unbearable suffering
encompasses, or, more precisely, who determines this. Some say that if someone considers their
quality of life insufficient, it can be unbearable suffering for that person. One could argue that it is
exactly this shift and these new cases which causes discussion within the Review Committees. But
these internal discussions rarely come out into the open and are almost entirely reported by
anonymous sources. Among physicians there is discussion about who determines whether the
patient deals with unbearable suffering. For the latter a solution has come from an unexpected
direction, the so-called ‘end-of-life clinic’.
LATEST DEVELOPMENTS
The end-of-life clinic started two years ago and works with a network of teams who perform house
visits to euthanize people whose own doctor wouldn’t go along with the request. Especially people
who consider themselves finished with their life find their way to the end-of-life clinic. This includes
people who are elderly, lonely, who have lost their partner, who are bored. These people are usually
not in the phase of dying at all. The end-of-life clinic doesn’t want people with psychiatric problems
or dementia to be left out in the cold, as they state it.
The number of people with dementia who received euthanasia in The Netherlands has doubled from
22 in 2011 to 42 in 2012 and again doubled to 94 in 2013. These are people who previously had a
good life expectancy.
Also, people with psychiatric problems have easier access to euthanasia now. For many years the
figure was around two per year. But in the last years it has risen to 13 in 2011, 14 in 2012 and finally
to 42 in 2013.
In the meantime the Review Committees which are established to supervise these ‘due diligence
criteria’ clear the way for these new indications. Firstly by the qualification of ‘due care’ for situations
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not thought of by the lawmaker at the time. Secondly by educating physicians on how to interpret
the law. The last annual report clarifies specifically what the law aims at and which misconceptions
physicians have. This clarification comes across like an encouragement.
The shift from ‘unbearable suffering’ to ‘quality of life’ opens the door for even more target groups,
such as severely handicapped new-born babies and the elderly with severe dementia. Both concern
mentally incompetent patients, they cannot clearly express their will. In The Netherlands a debate is
going on whether a will stating that a person wants euthanasia in the case of dementia should be
executed if they have got dementia, even by force. Furthermore, newborn babies with a severe
handicap are allowed to be killed, not only when they suffer, but also in view of the suffering which
they have ahead, according to a directive of the Dutch Association of Pediatrics. The suffering of the
parents may be taken into account when determining this.
The figures show that the majority of euthanasia cases are executed at home, by the family doctor.
This is a physician who works solo and is often not well trained in palliative care. In hospitals, nursing
homes and hospices the figures are much lower.
PRACTICE OF EUTHANASIA AND THE DEVELOPME NT OF PALLIATIVE CARE
At the beginning of the euthanasia debate in The Netherlands, palliative care didn’t get much
attention. To such an extent that the perception still persists that euthanasia is the only way to end
suffering and to die a dignified death. Does the negligence of the possibilities of palliative care result
in a higher number of euthanasia cases? This is not scientifically verifiable because it cannot be
tested as such.
However, it is many people’s estimation or assessment. At least that the order in The Netherlands
has been somewhat strange; to regulate euthanasia primarily and to think about palliative
possibilities only afterwards. Also, euthanasia dossiers often show a lack of palliative care – it was
either unavailable or refused by the patient.
Another important aspect is the experience of many caregivers that providing for palliative care and
discussing it makes the desire for euthanasia fade in many cases. This is also my personal experience.
Nursing homes which invested in good care noticed that as a positive side effect, the number of
euthanasia requests decreased drastically.
In the meantime the Dutch public supports the right to euthanasia. One considers it unfair that you
must get a severe illness for that. A large number of physicians have more and more difficulties with
this trend. They hesitate to express this however. One doesn’t want to be considered old-fashioned.
Furthermore, it touches upon existential matters which not everyone can express easily. Previously,
there was difficulty with applying euthanasia. But now it has become more difficult or shameful not
go along with it to a point that it seems that you have to defend yourself for not going along.
The Dutch Medical Association speaks of a moral duty to refer if a doctor does not want to euthanize
a patient, although there is no legal basis for that. Not yet, as a law aiming at this is being drafted.
However, the popular opinion nowadays is that a physician just has to address the request for
euthanasia because: 1) “I deal with my life myself”, 2) The physician has the access to drugs needed
for this, and finally 3) It is allowed by the law, as it is perceived. In this climate of tolerance a certain
level of intolerance emerges towards the people who do not go along with it.
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Therefore quite a few physicians are secretly pleased with the end-of-life clinic. Not because they
agree with the broad indications for euthanasia, but because they don’t have to deal with it
themselves any longer.
Why do I have great difficulty with euthanasia, as do many colleagues?
1. Fear of suffering, of how dying will be, is of all times. But particularly nowadays there is so
much that can be done about it;
2. The incentive to further develop these possibilities is hampered by offering and promoting
the option of euthanasia. “Why bother…?”
3. New indications are evolving, even incapacitated patients such as newborn babies. “Why
shouldn’t we save people from their suffering who cannot ask for it themselves?”
The Dutch Euthanasia Law has given a false sense of security. Review committees review a case of
euthanasia based on a report written by the executing physician himself. When the committee
qualifies a case as negligent, which has been 61 times in the past 12 years, it has never led to a
judicial review. Besides, the practice of euthanasia has become uncontrollable.
This practice which has got out of hand requires investigation and correction. But recently a
ministerial committee pleaded for a very different kind of investigation, namely to find out how
many healthy elderly people would like to terminate their life over time.
In a culture in which ending somebody’s life is common practice, the palliative approach of problems
faced by severely ill, disabled, elderly and people who are tired of living, becomes superfluous, as it
is increasingly considered unnecessarily expensive.
Paul Lieverse, anesthesiologist – pain specialist
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