The data
The Organic Law 3/2021 of March 24, on the regulation of euthanasia (LORE) was
published in Spain. The Law established a three-month deadline for its entry into
force, in which the 17 Autonomous Communities (CAs) of the Spanish State had to
appoint a Guarantee and Evaluation Commission (CGE) and organize a Registry of
conscientious objectors. The most important function of the CGEs is to verify each
application for the provision of aid in dying (PAM), to authorize it, if it meets the
requirements of the LORE, or to deny it, in which case the applicant can appeal to the
courts.
Some CAs did their homework on time, but others did not appoint their CGE until
October. Nevertheless, in 2021, 173 applications were processed and 75 PAMs were
made (43% of applications), in an average time of 60 days. In 2022, there were 576
applications and 288 PAMs (50%), within an average time frame of 75 days, and in
2023, 727 applications and 323 PAMs (44%), within a time frame that is likely to be
similar, but has not yet been published.
In relation to the number of deaths this means 0.67 euthanasias per thousand deaths
in 2022 and 0.74 in 2023, with notable variations among the 17 territories that will
have to be investigated (for example, in Navarra 12 times more euthanasias are
performed than in Murcia). In any case, compared with the experience of Canada or
Belgium, these figures are very low. Why? We lack data. We do not know.
One of the obstacles to understanding how the LORE works is the lack of
transparency. According to the law, CGEs are obliged to publish an annual report.
Three years later, a third of the CAs have not published anything and the rest have
published a report with indicators that do not coincide with the others, making them
very difficult to compare. Moreover, the Ministry of Health should make a report with
data from the 17 CAs, but the two reports already published so far (2021 and 2022)
are lousy, with scarce and inconsistent information, which does not answer the
fundamental question of how euthanasia works in Spain.
We suspect that many requests, perhaps double or triple the number of those that
are processed, are rejected in a first consultation and are not counted, with answers
such as: “Oops! Euthanasia, that is very complicated”, “that is not for you”, “I am a
substitute, tell your doctor in a few months when he comes back”, “we do not don’t
do that here”, etc., etc., etc. We have no data, it is a hypothesis based on several dozen
people’s testimonies, which is very worrying.
Up to 2023, 1,476 applications were processed and 686 PAMs were performed. Almost
a third of the people requesting aid in dying died during the process (a fact that
should also be investigated). Another Spanish differential characteristic is the high
proportion of neurological diseases (39%), in relation to oncological diseases (36%).
The reports do not detail how many applications have been motivated by a mental
disorder. The remaining 25% are pluripathology (8%), respiratory diseases (3%),
cardiac (1%) and “other unspecified diseases” (13%). It is in this last section that
mental disorders disappear. Partial data from reports published by some CAs mention
17 requests in 2022 for psychiatric cases. We know that at least 5 ended with
euthanasia, because that is what the relatives reported. Two people appealed the
refusal of the CGE to their request for a mental disorder to the justice system, with
the same result (they do not meet the requirements). We also know that CGEs prefer
a certain discretion about these cases. At least until August 2024, when a judge in
Barcelona temporarily suspended the euthanasia previously authorized by the CGE of
a 23-year-old woman for a mental disorder and a spinal cord injury.
The Constitutional Court does not exclude the mental disorder from the LORE.
In response to appeals filed by Vox (sentence 19/2023) and the Popular Party
(sentence 94/2023), in 2023 the Constitutional Court (TC) made it clear that the LORE
complies with the Spanish Constitution of 1978, provided that it is performed in a
euthanasia context.
In a 119-page argumentation, the TC mentions that “the serious suffering must
always be presented as a somatic disease in its origin, although the constant and
intolerable suffering may be of a psychic order. Thus, the LORE does not include
psychological illness or depression among the serious illnesses”. This statement
caused some initial confusion due to its terminology (somatic illness), which was
resolved by interpreting it as a concrete response to the false idea that any person
with a passing existential crisis or depression has the right to euthanasia. What the TC
does is to make it clear that these persons are not in a euthanasia context, but it does
not exclude serious, chronic and disabling conditions of psychological origin.
Discrimination against people with mental disorders
Persons with a severe mental disorder are persons with psychosocial disabilities. The
capacity for decision making in the health care setting is assessed by medical
personnel. The LORE perfectly defines de facto incapacity as the situation in which
one “lacks sufficient understanding and will to govern oneself autonomously, fully
and effectively, regardless of the existence or adoption of support measures for the
exercise of legal capacity”.
Assuming that people with mental disorders are incapable of understanding their
situation, therapeutic options and decision making is a very serious discrimination,
which is associated with the stigma caused by their diagnoses. Some professionals
claim that their own psychopathology interferes in this discernment, as if
psychopathology and suffering abolish people’s rationality and their right to
ask for help in dying.
Care for people diagnosed with a mental disorder has improved, but many people
still suffer psychic suffering caused by their mental disorder which, despite the
different therapies, psychosocial measures or pharmacological treatments employed
for years, they experience as constant and intolerable, and which it is currently not
possible to alleviate in a way that is satisfactory to them. This absence of
expectations of improvement, together with the non-existence of a limited life
prognosis, increases the anguish and suffering of these people, leading them to a
desperate life.
The Law gives the same relevance to physical and psychological suffering, so that
the intensity of suffering, chronicity, dysfunction, loss of autonomy and dignity in
those persons who, due to a serious, chronic and disabling mental disorder, no longer
wish to continue living, is not discriminated against or underestimated.
The rejection of euthanasia requests from people with severe mental health problems
is a paternalistic and conservative view of mental suffering in which the intensity
and repercussions of suffering are questioned, the chronicity of years of therapeutic
failures is doubted, and attempts are made to impose therapies, sometimes already
tried and tested, that do not prevent recurrences.
Euthanasia context: requirements
The LORE demands certain requirements and formalities that make the procedure a
very safe one: a person of legal age, national, resident or with a census registration of
more than 12 months, capable and conscious at the time of the request, and informed
about his or her medical process, the different alternatives and possibilities of action
(including palliative care and dependency benefits). It must be an autonomous,
individual, mature and genuine decision, without interference, meddling or undue
influence. Furthermore, he or she must be in a euthanasia context, as defined by the
LORE as serious, chronic and disabling illness or serious and incurable disease.
A serious mental disorder does not have a limited life prognosis, and is therefore not
a serious and incurable disease, in a context of progressive frailty (art. 3 c). To be
placed in a euthanasia context, it must meet the requirements of serious, chronic
and disabling conditions (art. 3 b). The Law defines this situation with three elements or requirements.
1) “Limitations that directly affect physical autonomy and activities of
daily living, in such a way as it doesn’t allow to fend for oneself, as well
as the capacity for expression and relationships”.
When the mental disorder is severe, it can result in a person’s inability to live
alone (fend for him/herself). Even if that person performs basic activities, the
difficulties in instrumental activities of daily living are also limitations on his/her
physical autonomy, so that he is unable to fend for himself/herself, express
himself/herself and relate to others.
2) “That is associated with constant and intolerable physical or psychological suffering”.
Suffering is a personal, subjective experience, which is universal, common to
all people, but which can only be known as one’s own in the first person.
Suffering is also “the unspeakable”, the inscrutable. Suffering is not valued, nor
verified, it is ascertained through the account given by the person requesting
assistance in dying during the deliberative process. The role of the
professionals is to facilitate the person’s ability to recount it in a way that is
understandable, to determine its nature (how he/she suffers), to propose
measures to alleviate that suffering or to ascertain that it is constant and
intolerable and meets the requirements of the Law.
In no case should professionals question the person’s values, such as the threat
of loss of dignity, the absence of a life project or of a meaning to continue
living a life that for that person lacks value.
3) “It is certain or highly probable that these limitations will persist over
time with no prospect of cure or appreciable improvement”.
The term “incurable” in the context of mental disorders can be misleading. In
general, many mental disorders are not “cured,” but can be managed
acceptably with therapeutic and psychosocial measures. A mental disorder may
be irreversible, yet there is a possibility of appreciable improvement for the
person.
However, in many other cases some indicators (such as early onset, years of
evolution or persistent symptoms) indicate that a severe mental disorder is
chronic and resistant to all treatments available up to that time. This is a fact,
there are people whose quality of life has deteriorated irremediably due to a
mental disorder, for whom recovery is not possible. Some, fed up with a life of
suffering and limitations, do not wish to wait for hypothetical new therapies in
the future and wish to be released through assisted dying.
During the deliberative process, the physician in charge of the PAM collects
the clinical and psychosocial history, pharmacological and psychotherapeutic
treatments used, long-term admissions, work, family and social environment
and all the important elements that make up the biography of a person. After
consulting the professionals he/she considers appropriate (social worker,
psychotherapists, family doctor, etc.), the responsible physician will draw up a
report with clinical information (diagnoses, therapeutic and care itinerary,
prognosis), the nature of the suffering, treatment alternatives and the
applicant’s willingness to die, without external coercion or pressure. The
consulting physician will independently verify that the requirements are met.
And finally, the CGE will carry out the pre-verification.
Requests for assistance to die for psychological suffering due to mental
disorder occur after years of evolution, so there is no doubt about its chronicity.
Irremediable suffering: the crux of euthanasia for mental disorder.
The request for assistance in dying from a person with an experience of intolerable
suffering, such as a loss of dignity, due to progressive deterioration due to a
neurodegenerative disease, terminal cancer or multi-pathology associated with
advanced age, is much easier to understand than for a mental disorder. This is mainly
due to the irremediability of the deterioration, a differential fact compared to the
uncertainty of the psychiatric prognosis, which is much more complex to define than
in dementia or organ failure (respiratory, cardiac, renal, etc.).
Psychiatrists must raise all reasonable treatment alternatives, which means that
there is a prospect of improvement, in a foreseeable time, that is acceptable to the
patient.
Uncertainty is innate to human life and to the practice of medicine. The practitioner
must confront his uncertainty with the patient’s autonomy. If he or she honestly and
realistically (reasonably) considers that there are treatments and psychosocial
measures capable of improving his or her life, he should raise them in deliberation.
Some people show treatment fatigue, because for years nothing has worked and they
can no longer cope. They have the right to refuse any treatment. In that case, the
prognosis should be redefined respecting the preferences and decisions of the person
asking for help to die. We know that it is not a brain tumor, but we have the obligation
to respect it as if it were, even with the uncertainty that “perhaps”, in the future, she
might have found the personal serenity necessary to endure her mental disorder.
An intermediate approach is to propose to the applicant a therapeutic agreement, a
time frame in which results could be expected, defining the meaning of an
“appreciable improvement” for that person. For example, that she will recover her life,
i.e. her independence, that she will be able to live alone (fend for herself), have a job,
a reference group of people, or whatever it is that will make her experience of
suffering to be tolerable for her. Of course, the agreement is a two-way commitment:
if after these months the person wishes to die, the professional undertakes to process
the request.
Requests for assistance in dying are resolved on a case-by-case basis. No one person
is the same as another, but the value that the professional provides is the knowledge
of how other people have fared in similar illness situations. If we are honest, we must
recognize that there are tragic illnesses, lives broken by illness, that
professionals bear witness. Requests for euthanasia due to a mental disorder may
require several months to process, or the period established in a therapeutic
agreement, but always with the unavoidable commitment to respect the will of the
requesting person.
Noelia, a case that should not have come to court
In August 2024, a judge in Barcelona prevented a euthanasia previously authorized
by the CGE from being carried out. According to the media, Noelia is a 23-year-old
young woman with borderline personality disorder and obsessive-compulsive
disorder, with a spinal cord injury that has prevented her from moving her legs since
2022, after a suicide attempt in which she jumped from a 5th floor.
We do not know how long it took for Noelia’s request for aid in dying to be authorize,
but in 2022 the average was 6 weeks, with some cases reaching 4 months. Some
friends went to court to report that Noelia had doubts and that she had signed a
letter requesting a 6-months deferral of the PAM. The friends took the letter to a
notary and then to court, which is completely unnecessary because it is enough for
the applicant to notify her doctor and sign a form posted on the internet. Noelia
declared before the judge that it was an episode of temporary regret, but that she
wanted to die. The coroner certified that she was of sound mind. Meanwhile, Noelia’s
father went to another court to complain that the requirements of the LORE were not
met.
In this case, on August 1 the judge decided to stop euthanasia. The judge’s perplexity
at a father’s request to prevent the death of his 23-year-old daughter is
understandable. It is reasonable that she asked for time to study an unpublished case.
In agreement with all the parties, in his order of August 9 she decided to maintain the
precautionary measures and send the case to the Superior Court of Justice of
Catalonia. But the judge in her order goes further and maintains that Noelia is
not in a euthanasia context. As the vice president of the CGE of Catalonia said, she
is getting into a mess that does not belong to her, because no judge has the
knowledge to determine whether a person suffers from a serious, chronic and
disabling condition. She will do so on the basis of what the professionals inform
her.
How daring is ignorance! In her order, the judge mentions a video shown to her by
Noelia’s father, in which she is seen walking with crutches, to cast doubt on the
medical reports (by the way, charging the professionals with a crime). This is very
serious, especially when the judge has not seen Noelia. According to her order, “she
was summoned by the administration to appear before this Court, leaving us with her
absence in absolute silence that cannot be repaired with the documentation provided
together with the administrative file on her psychophysical situation.
Why hasn’t your honor come to visit her? Because Noelia’s will to die, her
experience of suffering and her dignity do not move her, nor do they provoke
the slightest compassion. What the judge is trying to do is to twist the Law to
revoke euthanasia, something that only Noelia can do. Perhaps, after the media
circus that her father has put on, without any respect for his daughter’s privacy, Noelia
decides to endure a little longer and postpone her euthanasia, it is her right, not her
father’s and certainly not a judge’s.
No one can request euthanasia for another person. No one can request the
postponement or revoke it. No loved one, family member, friend or any authority
can request euthanasia for you. And no one has the legitimacy to prevent it.
Spain