A dignified end in Spain

Since June 2021, Spain has a law on euthanasia. Voluntary termination of life is therefore legal in Spain, but it remains a sensitive issue. Euthanasia arouses many emotions in patients as well as in health professionals.

We see more and more cases related to a dignified end that deserve more attention - regardless of your age! We explain everything here and have divided the text into three chapters.

1. Advance directives in Spain
2. Euthanasia and sedation
3. Application for euthanasia

Important:

The following information is a compilation from various sources (as indicated in the text) and is intended solely to inform our patients about a dignified end in Spain. This text has been written in response to patients' questions and is not based on any ideology or personal preference. We are not responsible in any way, nor can we be held liable for any harm that may arise from this text. We are not responsible for future changes in procedure, conditions and provisions, and refer to our sources for the most current and complete information. We also ask everyone, in case of doubt, to consult the sources first. If you are still in doubt, you can ask your questions to the SAIP Denia (see below). It is absolutely not our intention that patients from other practices come to us with a request for euthanasia. If you have any questions about euthanasia, please do not hesitate to make an appointment with your GP. Euthanasia is a serious matter and advice should be provided by your own GP.

SAIP Denia: hd*********@*va.es (only patients from the Denia region; for other SAIPs, please see this list).

Part 1. Advance directives

It is not very common, while enjoying sunshine, friends and the good life, to think about what you want when, in the future, things are no longer going so well. Like most people, you probably prefer to postpone it, which is totally understandable.

However, it would be good to reflect for a moment on the fact that you may reach a situation where you can no longer decide for yourself about your own life, about the treatments you need and about the quality of life you have left. Perhaps you have a partner, a family member or a good friend you can trust, someone who can help you and who can decide for you what to do when you can no longer do it. But does that person know exactly what you want?

Many people already have one: a self-drafted living will or a Dutch living will (attention, this is different from a will or a codicil) in which you state how you want to be taken care of when you can no longer take care of yourself. It is a good idea to put your wishes in writing, and also to think about that next step, when you can no longer do it yourself. In this way, you ensure that you do not find yourself in a situation where you can no longer have recourse to euthanasia or other forms of help in the last phase of your life, simply because you can no longer express yourself due to dementia, an accident or a coma. It is therefore important to take action before something happens. And if you live in Spain, make sure that your wishes are written down on paper, according to Spanish rules, and that they are written in Spanish, but first read on.

There are broadly two situations:

1) Due to an accident or a sudden illness, you find yourself in a situation where you can no longer decide about your own well-being. An operation or intervention is necessary to save your life, but it is not clear whether this will make sense. You cannot participate in the decision about treatment, nor can you say what you want. Your partner, a family member or a good friend must make very important decisions about you, without being able to consult you. It is above all a question of whether or not he should be actively treated.

2) Due to a serious illness with no possibility of cure, your condition is getting progressively worse and, at a certain point, you are in unbearable suffering. Of course, you receive good palliative care, but you know that you are no longer going to get better. Are you still capable of making a considered decision about treatment, or even about the end of life, i.e. euthanasia? It is therefore the decision whether or not to end one's life.

The boundary between these two situations is not clear, indeed they sometimes overlap.

Spain has an online register of declarations of intent. The advantage is that this register can be consulted directly by a doctor whenever necessary. Your wishes are known immediately, even if you are no longer able to express them yourself. You can use the register of advance directives by filling in a form: the Advance Directives. In it you write what you want to be done if you can no longer express yourself with regard to:

1. Consent to the medical treatment you need.
2. Donating your organs or your body to science.
3. A request for euthanasia.

Registration requires two witnesses. More information is provided below. When filling in the form, please make sure that the comments you write on the document are written in correct English and in a clear handwriting. Below are some examples of what you can write as comments.

What to write in your living will? Here we offer you the tips of the foundation "Right to die with dignity": https://derechoamorir.org/testamento-vital/#cvalenciana. If you wish, you can also consult the official instructions of the Generalitat Valenciana, which you will find on this page (translate the text by right-clicking on it): https://www.gva.es/es/inicio/procedimientos?id_proc=2709&version=amp.

Start by downloading here the Generalitat Valenciana's model declaration of will (each autonomous community has its own declaration of will) and fill it in with your details and preferences: https://siac-front.gva.es/siac-front/public/descarga/es/F53294.

An (unofficial) translation of the form into Spanish can be found here: https://clinicabenissa.com/wp-content/uploads/2024/03/Voluntades-anticipadas.es_.nl_.pdf.

Make sure that you are familiar with the contents of the declaration of intent, that you understand what it is for and, above all, that you think carefully and calmly about what you are writing. Don't forget that the declaration of intent is yours alone and that it reflects your personal wishes and decisions, as you wish to express them.

Under the heading "Other instructions", you can include, if you wish, the suggestions (in Spanish) of the foundation "...".Right to die with dignity". Below, we have included them in four points in Dutch (see the original English text at the end of the document).

1. I request that my life be ended as soon as possible by euthanasia.
2. I consider it to be a continuous and unbearable physical or psychological suffering, incompatible with my personal dignity, that certain serious, chronic and incapacitating diseases, such as neurodegenerative diseases (dementia such as Alzheimer's or another form) cause such a deterioration of my personality and my mental capacities that they prevent me from being aware of my own illness and my values. Therefore, even if I do not express it, even if I do not remember it or even if, in the opinion of others, I do not show outward signs of suffering, as soon as I can no longer care for myself or as soon as I no longer recognise my relatives or friends, or when I am in a clinical situation comparable to moderately severe dementia (GDS-FAST 5, according to the Reisberg scales, see endnote). [i] that my wish to end my life as soon as possible by euthanasia be respected.
3. During the period necessary to process my request for euthanasia, or in the event that the request is denied, I refuse any life-sustaining measure, treatment, intervention or procedure that would contribute to keeping me alive (administration of antibiotics, feeding or fluids by gastric tube or gastrostomy, placement of a pacemaker or use of a defibrillator, etc.). I also request that my suffering be alleviated by all available means and, if I am in an advanced or terminal state, I wish to die under deep palliative sedation, which will be maintained until my death. Should there be any doubt about the irreversibility of my actual inability to decide, I wish to make it clear that such a possibility does not in any way affect my firm decision that I do not wish to live a life in which I am dependent on others for the activities of daily living.
4. If a health professional declares that he/she has conscientious objections to any of these instructions, I request that he/she be replaced by another health professional, in order to guarantee my right to decide freely about my life and death.

What next?

Find two witnesses. One of the two witnesses must be a person who is not related to you and who has no economic, financial or property relationship with you. The two witnesses must declare that you have drawn up the living will freely and in full use of your mental faculties. You will need a photocopy of your identity documents. Witnesses do not have to be present when the document is handed in. A patient at our Clinica Benissa practice who has problems finding a second witness can ask one of the doctors at our practice to sign as a witness. One person can be a witness in several declarations of will. And they can also be witnesses for each other. A witness simply signs that someone is capable of expressing his or her will and that he or she fills out these documents without pressure. Therefore, it is not a question of assessing the specific wishes of the form, it is up to the individual to decide for himself. Therefore, there is the possibility to discuss this with the people around you, to be witnesses for each other and to hand in the documents together.

Sometimes people also choose to appoint a representative. The function of a proxy is to defend your declaration of intent to the medical team at the time when you are no longer able to do so. We recommend that you choose someone whom you not only trust, but who, if possible, is younger than you. Ask this person to sign your declaration of intent (i.e. in addition to the two witnesses, another person will sign: your proxy) and make a photocopy of this proxy's identity card.

Who can be your representative? This can be any person of legal age (who is legally capable), but not one of the following persons:

- Neither of the two witnesses who sign your declaration of intent.

- The notary who authorises the deed.

- Not the public officer or agent responsible for the registration of the Advance Directives.

- Not the health personnel who have to carry out the Advance Directives.

- In private health care: not staff who have a contractual relationship, service or similar with your private health insurer.

Where is the declaration of intent registered?

Once signed, the Advance DirectivesYou can register in three different ways, according to your choice:

1. At a service point: a Patient Care and Information Service (Servicio de Atención e Información al Paciente - SAIP). You will find them in public hospitals, for example at the hospital in Denia (see below for address).
2. By means of a public deed before a notary in your municipality. This entails costs. Prepare well for your visit to the notary. Read, for example, the translation of the Advance Directives and also read the suggestions for additional texts below.
3. Online. To formalise the registration, you will need a Spanish digital ID of yourself, the two witnesses and the possible co-signing representative. Here you will find the direct link to the login page of the website: https://www.tramita.gva.es/ctt-att-atr/asistente/iniciarTramite.html?tramite=VOLANT-SOL&version=1&idioma=es&idProcGuc=2709&idSubfaseGuc=SOLICITUD&idCatGuc=PR. The easiest way seems to be through the Cl@ve application, which must be installed on each person's mobile phone. Instructions in English can be found here: https://clave.gob.es/clave_Home/en/Clave-Movil.html.

If you choose the Citizen Service Point (SAIP), what do you have to present? Two things:

A The completed form with the signatures of all participants (yours, your two witnesses and, if you have one, your representative).

B Copies of official identity documents for you, your two witnesses and, if you have one, your representative. An official identity document is: DNI or NIE, passport or identity card (copy of the front and back). Therefore, the two witnesses do not have to accompany you to the SAIP. It is also not necessary for the representative to accompany you, if you have one.

The SAIP window is located in the Dénia HospitalAv. Marina Alta, s/n., next to the CV725 road, and is open from Monday to Friday from 9 am to 2 pm.

Modify or revoke. If you have registered a declaration of intent and wish to change or revoke something, you can do so with this document: https://siac-front.gva.es/siac-front/public/descarga/es/F132153. The first option in this document (WITHDRAW) is the withdrawal of the declaration. The second option is the modification of the declaration (MODIFY). In the latter case, you must also complete a new declaration of wishes (Advance Directive) in full and have it signed by the witnesses and, if applicable, the representative. See instructions above. Once signed, return the document and the new declaration of wills (with all identity documents) to the SAIP of Dénia Hospital.

Note: It is not obligatory to record the declaration of intent, but it is advisable. In this way, the declaration of intent will be quickly at hand in case you, or your doctor, need it. If you do not have a declaration of intent and wish to write one quickly without registering it, please write it down, preferably using the document official (in English), but remember: do it in the presence of witnesses, keep the declaration of will safe, inform someone where you are and make a copy for your witnesses.

Part 2. Euthanasia and sedation

Euthanasia and sedation are terms used to alleviate the suffering of seriously ill patients, but they differ in their purpose and method:

1. Euthanasia: refers to the deliberate termination of a patient's life by a physician, usually at the patient's own request, to end unbearable suffering. Euthanasia is carried out by administering drugs that alter consciousness and then stop the respiratory system, resulting in the patient's death.
2. SedationSedation is the administration of drugs to put the patient into a state of reduced consciousness, often to relieve severe suffering that cannot be effectively controlled by other means, such as analgesics. Sedation may be used in palliative care to provide comfort to terminally ill patients, without the goal of ending their life.

Therefore, the main difference between the two is that euthanasia aims to actively end the patient's life to relieve suffering, whereas sedation aims to reduce consciousness to provide comfort and relieve suffering, without the specific goal of ending life.

Sedation is part of palliative care, is not regulated by the Euthanasia Act and can be performed as a treatment. Most physicians in this region have extensive experience in sedation in the domestic setting and can, if necessary, relieve a patient's pain or other suffering in the short term.

If there is a request for assistance in dying and the patient wishes to request euthanasia, we follow the Euthanasia Act. In that case, a number of steps have to be followed. These steps take between 30 and 40 days and are intended to demonstrate as precisely as possible that the patient's request is personal, firm, free, meditated and in accordance with the provisions of the Euthanasia Act.

Part 3. Application for euthanasia (Organic Law Regulating Euthanasia (LOR)

In the text below, reference is made several times to forms (the application for euthanasia, a form to file a complaint about a refusal, etc.). These documents can be find grouped together: here. More information on the procedure is also available here.

Step 1. Find a responsible doctor

Talk to your doctor first and ask if he or she is willing to help you die before you apply. You can ask any registered doctor you have access to, whether in primary or specialised care, in the public or private system. Take this form to the doctor's office in order to request euthanasia and sign it in the presence of the doctor. This is the "first application form".

A doctor can never refuse to accept the "first application". If he or she has personal objections, he or she must communicate this immediately and give your signed request to a colleague or superior.

Note: If the doctor who had objections has passed on your request to a colleague, you should receive a reply within a few days. If not, file a complaint (to a superior, a coordinator, the director of the health centre, the patient care service or the administration). See here for examples of how to write a letter: https://derechoamorir.org/eutanasia-en-espana/

Once the doctor has agreed to treat your request for euthanasia, he or she becomes your "responsible doctor". This doctor will include your request in your medical record, after which the process of care will begin, within the time limits established by law.

The "responsible physician" checks the following requirements:

1. You are a citizen, resident or have been registered in Spain for more than 12 months.
2. You have submitted your application voluntarily (and in writing), and your application is not the result of any "external" pressure.
3. You are suffering from a serious and incurable disease or a serious, chronic and disabling illness within the meaning of this law, certified by the "responsible physician".

If you meet these three requirements, your "doctor in charge" will have a consultation with you within two days about the diagnosis, treatment options and expected outcomes, as well as possible palliative care. Make sure you understand the information provided. The "doctor in charge" will explain the information directly to you, but will also provide it to you in writing (within 5 calendar days).

To facilitate the consultation, think carefully beforehand about your situation and your request, trying to answer these two questions (you can also respond in writing or by audio recording):

1. Why is their suffering constant and unbearable, with no possibility of cure or appreciable improvement?
2. How do you justify that your willingness to request euthanasia is serious, firm, repeated and unequivocal, without external pressure?

For more information Spanish.

Note: The doctor in charge can refuse the requested euthanasia within 10 days of your first request. You can lodge a complaint about this with the Commission for Guarantees and Evaluation (CGE) within 15 days of that date.

Step 2. Submit a second application after 15 days.

If the application is accepted, you can continue. No later than 15 days after the "first application", submit the "application form".second request"to the "responsible physician". Within 2 days, this doctor will resume the decision-making procedure, in which the information obtained will be elaborated. 24 hours after the consultation, repeat your wish to continue with the procedure. The "doctor in charge" will inform, if he/she has not already done so, the relatives of your choice and, if you are admitted, also the nursing service. You will then sign a form indicating that you have been duly informed and thus give your consent to the next step.

Step 3. Examination by the consultant physician

The "responsible physician" must consult a "consultant physician". He or she will examine your file and confirm that the legal requirements are met. A report will be issued within 10 days after the "second request". The "consultant doctor" is trained in the field of the disease(s) from which you suffer. The "consultant doctor" can be a primary care doctor or a specialist, but cannot be a member of the same team as the "responsible doctor" and cannot have had any previous health care relationship with you.

Step 4. Evaluation by the Evaluation and Assurance Commission (EAC)

The "responsible doctor" sends all documents to the Commission (CGE) within 3 days. Within 2 days, the President of the Commission appoints two people (a doctor and a lawyer) who re-examine your records and interview you and your health care team. A report is issued within 7 days.

Note: The Foundation "Right to die with dignity". recommends accepting only a face-to-face interview, and not an interview by videoconference or telephone. The reason is that these may give a distorted picture of your deteriorating health. The two people from the Commission have access to a file with all the information about you. If they do not trust the favourable reports of the "responsible doctor" and the "consultant doctor" and want to see you in person, they should come to your home. Tell the members of the Commission that your will is unequivocal, clear and irrevocable, because of an experience of suffering that is constant and unbearable for you, with no prospect of improvement.

Within two days, the President of the Commission will inform you of the result, as well as your "responsible doctor". If, against all odds, the result is unfavourable, you can lodge a complaint within 15 days with the plenary meeting of the CGE, which has 20 days to reply (if you do not receive a reply within 20 days, you can expect it to have been rejected). Use this document to do so: https://www.san.gva.es/documents/d/assistencia-sanitaria/modelo_9_reclamacion_contra_denegacion.

Decisions of the CEM can also be appealed before the Administrative Court. On the other hand, it is likely to be more convenient and quicker to file a new application immediately after the refusal.

Note: The Foundation "Right to die with dignity". recommended: Depending on your illness, you may be a candidate for organ donation. To do so, you must die in the hospital. If you are interested in donating organs after your death, or your body, please ask the transplant coordinator at the hospital.

Step 5. Aid in dying

If the CGE's opinion is positive, you decide when, how and where to die. The law does not establish a time limit. The so-called "Good Practice Guide of the Ministry of Health" recommends requesting a postponement of 1 to 2 months after about 15 days, but ultimately this also depends on the "responsible doctor" and his or her possible care team. A deferral gives you the possibility to really choose the moment, even if you have initiated the request well in advance.

Agree on the day and time with your doctor in charge and your care team, if you have one. You choose how and where you want to die. It can be at home, in your bed or on the sofa in the living room, on the terrace or in the garden, but also discuss this with your "doctor in charge" and your care team, if you have one, so that they can work in the best possible conditions. Choose the people you want to be with you, before and during euthanasia, and choose if you want to listen to music, let them know how you want it. Die the way you want to die. You can drink the pentobarbital syrup yourself, or you can open the intravenous line containing the drugs yourself, or you can indicate that you want to be put to sleep so that the team can take care of everything.

Note: The Foundation "Right to die with dignity". recommends: If you receive a positive response from the CEM, think about your funeral rituals. If you have any wishes, communicate them to your loved ones or, better still, clarify them in advance with a funeral home.

We hope you have found this information useful. If you have any questions about euthanasia, do not hesitate to make an appointment with your family doctor. Euthanasia is a serious matter, and you should be accompanied by your (family) doctor who has known you for a long time.

The above information is a compilation from various sources (as indicated in the text) and its sole purpose is to inform our patients about how to have a dignified end in Spain. This text has been written in response to patients' questions and is not based on any ideology or personal preference. We cannot be held responsible in any way, nor can we be held liable for any damages that may arise from this text. We are not responsible for future changes in procedure, conditions and provisions, and refer to our sources for the most current and complete information. We also ask everyone, in case of doubt, to consult the sources first. If you are still in doubt, you are welcome to submit your questions to the SAIP Denia (see below). It is absolutely not our intention that patients from other practices come to us with a request for euthanasia. If you have any questions about euthanasia, please do not hesitate to make an appointment with your GP. Euthanasia is a serious matter and advice should be provided by your own GP.

SAIP Denia: hd*********@*va.es (only patients from the Denia region; for other SAIPs, please see this list).

Note 1

The degree of dementia according to Reisberg (see all stages 1 to 7): https://btsg.nl/wp-content/uploads/2020/03/GLOBAL-DETERIORATION-SCALE.pdf). Stage 5 involves: moderately severe cognitive impairment (early stage dementia or moderate Alzheimer's dementia). The patient is no longer able to look after himself/herself. In an interview, he/she is no longer able to remember facts he/she used to know, such as an address or telephone number, the names of close relatives (grandchildren) or the name of the school he/she used to attend. There is often a temporal (date, day of the week, season of the year...) and spatial disorientation. A patient with a good academic background has difficulties in performing simple and repetitive arithmetic operations (subtracting 4 from 40 or 2 from 20). At this stage, the notion of important personal facts about oneself or close relatives is often still preserved. He still remembers the name of his partner, his children and his own name. He/she does not need help with personal hygiene and feeding, but sometimes has difficulties in dressing appropriately.

Note 2

In a living will sets out what should be done medically at the end of your life. This document is important if (due to illness or accident) you are no longer able to express this yourself. You can also describe in which situation life no longer seems worthy or valuable to you and whether you wish to end your life in this case, for example by a declaration of do not resuscitate or a wish for euthanasia. You can also record your wishes regarding organ or body donation. Make sure that your wishes reach your family and doctors.

A living will refers specifically to the situation where you are still alive, but can no longer take good care of yourself due to illness. Like a will, it is primarily concerned with financial matters. Think, for example, of the management of your bank accounts. Personal matters, such as who will take care of your home and pet if you are hospitalised or no longer able to care for them properly, can also be included in a living will. You can also write down your wishes regarding your farewell. Make sure your family members know your wishes.

A will is drawn up by a notary. A will comes into effect after your death and mainly concerns financial and legal (property) matters. Wills are entered in a national register, so that any notary in the Netherlands can consult wills drawn up elsewhere. You will receive a copy, so that the original can always be traced.

A codicil is a document (often handwritten) in which you can write down what is to be done with your personal affairs after your death, such as your jewellery, a particular painting, your stamp collection or your clothes. You cannot bequeath money or a house by codicil. Matters of financial importance are part of the estate and are allocated or distributed by will. However, you can write in your codicil what your wishes are regarding your farewell.

Make sure that your wishes and last wishes are written down somewhere where your relatives can find them.

Note 3

The suggestions of the foundation "Right to die with dignity"in the original Spanish text.

1. I request that my life be ended as soon as possible by euthanasia.
2. I consider constant and intolerable physical or psychological suffering, incompatible with my personal dignity, when serious, chronic and incapacitating illnesses, such as neurodegenerative diseases (dementia of the Alzheimer's type or any other), cause such a deterioration of my personality and my mental faculties that I am incapable of being aware of my own illness and my scheme of values. Therefore, even if I do not express it, do not remember it or, in the opinion of others, do not show outward signs of suffering, as soon as I am unable to look after myself or do not recognise my relatives or friends, or am in a clinical situation comparable to moderate dementia (GDS-FAST 5, according to the Reisberg scales), I wish that my wish to end my life as soon as possible by euthanasia be respected.
3. During the period of time required to process my request for euthanasia, or in the event that it is denied, I refuse any life support measure, treatment, intervention or procedure that would contribute to keeping me alive (antibiotics, nutrition-hydration with fluids, nasogastric tube or gastrostomy, pacemaker or defibrillator, etc.). I also request that my suffering be alleviated by all available means and, if I am in an advanced or terminal condition, I wish to die under deep palliative sedation, maintained until my death. Should there be any doubt about the irreversibility of my de facto incapacity to decide, I wish to make it clear that such a possibility does not alter my firm decision not to endure a life in which I am dependent on others for the activities of daily living.
4. Should any health professional declare themselves to be a conscientious objector with respect to any of these instructions, I request that they be replaced by another professional, guaranteeing my right to decide freely about my life and death.

Thanks to Fred and Gerda Assink for their contributions and to Wendy Scholte Hendriksen for the thorough review of this text!

Information for the responsible physician: https://www.san.gva.es/es/web/assistencia-sanitaria/professionals