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A dignified end in Spain

Since June 2021, Spain has had a euthanasia law. Termination of life on request is thus legal in Spain, but it is still a sensitive subject. Euthanasia raises many emotions among patients, and also among caregivers.

We see around a dignified end of life several issues that deserve attention. Regardless of your age! We list everything for you here and have divided the text into three chapters.

1. The Spanish Declaration of Will(Voluntades Anticipades)
2. Euthanasia and sedation
3. Requesting euthanasia

Important:

The information below is a compilation from various sources (as mentioned 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 patient queries 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 suffered as a result of the following text. We are not responsible for any future changes to the procedure, terms and conditions, and refer to our sources for the most current and complete information. We also ask everyone to consult the sources first in case of doubt. If you still have doubts by then, you can direct your questions to the SAIP Denia: (only patients from the Denia region, for other SAIPs please refer to this list). It is by no means our intention that patients from other practices come to us with a request for euthanasia. If you have questions about euthanasia, please do not hesitate to make an appointment with your own general practitioner. Euthanasia is a serious matter and guidance should be provided by your own doctor.

Part 1. The Spanish will (Voluntades Anticipadas)

It’s not so obvious, enjoying the sun, friends and the nice life, to think about what you want when, one day, in the future, things don’t go so well for you. Like most people, you probably prefer to put that off for a bit longer, which is completely understandable.

Still, it would be good to take a moment to reflect on the fact that you may find yourself in 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 that remains. Maybe there is a partner, a family member or a close friend you can count on, someone who helps you and who can decide for you what should happen at the moment you can no longer do it yourself. But does that person know exactly what you want?

Many people already have one: a self-written will  that states how you want to be taken care of when you are no longer able to do so yourself. It is a good idea to put your wishes on paper, and when doing so, think about that little step further, about the moment when you no longer can do it yourself. This will ensure that you do not end up in a situation where you can no longer call on euthanasia or other forms of help in the last phase of life, simply because you can no longer express yourself due to dementia, an accident or a coma. So it is important to make arrangements before anything happens. And if you live in Spain, make sure your wishes are written down according to Spanish rules, and that they are written in Spanish, but read on first.

There are roughly two situations:

1) An accident or sudden illness puts you in a situation where you can no longer judge your own well-being. Surgery is needed, or life-saving treatment, but it is unclear whether it will be useful. You cannot have a say in the treatment yourself, nor can you express what you want. In fact, your partner, a family member or a close friend has to make very essential decisions about you, without being able to discuss them with you. So this is particularly about whether or not to actively treat you.

2) Due to a serious illness without any chance of cure, you deteriorate more and more, and at some point you enter a situation of unbearable suffering. Of course you get good palliative care, but you know that things will not get better. Are you still able to make a well-considered decision about treatment, or even about ending life, i.e. euthanasia? So this is particularly about whether or not to actively end life.

The boundary of these two situations is not sharp, indeed, sometimes they overlap.

Spain has an online register of living wills. The advantage is that this register can be consulted instantly by a doctor at the moment of acute need. One knows immediately what your wishes are, even if you can no longer tell them yourself. You can use the register of wills by filling in a form: the Voluntades Anticipadas. In it, you write what you want to happen if you can no longer express yourself with regard to:

1. The consent for the medical procedures you need.
2. Donating your organs or your body to science.
3. A request for euthanasia.

Registration requires two witnesses. More on that later. When filling in, make sure that any comments you write in the document are written in good Spanish, and in clear handwriting. Below are some examples of what you can write as comments.

What do you write in your will? We give you the advice from the foundation ‘Derecho a morir dignamente‘, in Dutch: ‘The right to die with dignity’. If you want, you can also grab the official instructions from the Valencian Generalitat, you can find them on this page (translate the text by right-clicking your mouse).

Start by downloading – here – the Valencian Generalitat’s model will form (each autonomous region has its own will form) and fill it in with your details and preferences. You can find an (unofficial) translation of the form in English here.

Make sure you are well versed in the contents of the will, that you understand what the will is for, and above all, think carefully and calmly about what you write. Remember that the will is yours alone, and that the declaration reflects your personal wishes and decisions, exactly in the way you want to express them.

Under the heading ‘Other instructions’ you can adopt the suggestions (in Spanish) of the ‘Derecho a morir dignament‘ foundation if you wish, we have listed them below in 4 points in Dutch (See the Spanish, original text at the end of the document).

1. I request that my life be ended by euthanasia as soon as possible.
2. I consider it continuous and unbearable physical or psychological suffering, incompatible with my personal dignity, that certain serious, chronic and disabling conditions such as neurodegenerative diseases (dementia such as Alzheimer’s or another form), among others, cause such a deterioration of my personality and mental faculties that I am unable to be 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 any outward signs of suffering – as soon as I can no longer take care of myself or as soon as I no longer recognise my family members or friends, or when I am in a clinical situation similar to moderately severe dementia (GDS-FAST 5, according to the Reisberg scales, see endnote)[i] I want my wish to end my life as soon as possible by euthanasia to be respected.
3. During the period required to process my request for euthanasia, or in the event that the request is refused, I refuse any life-sustaining measure, treatment, intervention or procedure that would contribute to keeping me alive (administering antibiotics, nutrition or fluid via gavage or gastrostomy, placing a pacemaker or using a defibrillator, etc.). I also request that my suffering be relieved by all available means and, if I am in an advanced or terminal condition, I want to die under deep palliative sedation, which will be maintained until my death. Should there be any doubt about the irreversibility of my actual incapacity to decide, I wish to make it clear that such a possibility does not alter my firm decision not to want to live a life in which I depend on others for the activities of daily living.
4. If a caregiver should declare that he or she has conscientious objections regarding any of these instructions, I request that he or she be replaced by another caregiver so that my right to decide freely about my life and death is guaranteed.

How to proceed now?

Provide two witnesses. One of the two witnesses must be someone other than a family member, and that person must also have no economic, financial or property relationship with you. The two witnesses must certify that you made the will freely and with full mental capacity. You will need a photocopy of their identity cards. The witnesses do not need to accompany you when submitting the document. A patient at our Clinica Benissa practice who has a problem finding a second witness can ask one of the doctors at our practice to co-sign as a witness. A person can be a witness on multiple wills. And you can also be witnesses to each other. A witness does nothing more than sign that someone is competent to make a will and fill in these papers without pressure. So it’s not about assessing specific wishes on the form; that’s something each person decides for themselves. So there is an opportunity to discuss this with people close to you and witness for each other and submit the documents together.

Sometimes people also choose to appoint a representative. The role of a representative is to defend your living will to the medical care team at a time when you are no longer able to do so yourself. We recommend that you choose someone you not only trust, but preferably also someone younger than you. Have this person co-sign your living will (so: in addition to the two witnesses, another person will sign: your representative), and also make sure you have a photocopy of the representative’s identity card.

Who can be your representative? This can be any adult (having legal capacity before the law) but not one of the following persons:

– Not one of the two witnesses co-signing your will.
– Not the notary who authorises the document.
– Not the civil servant or government official responsible for registering the Voluntades Anticipadas.
– Not the healthcare personnel who are to carry out the Voluntades Anticipadas.
– In the field of private healthcare: not the personnel who have a contractual relationship, a service or something similar with your private healthcare insurer.

Where do you register the will

Once the Voluntades Anticipadas is signed, then you can do the registration in three different ways of your choice:

1. At a service point: a Servicios de atención e información al paciente (SAIP). You will find these in state hospitals, for example the hospital in Denia (see below for the address).
2. Through a public deed at a notary in your municipality. There are costs associated with this. Prepare your visit to the notary well. For example, read the translation of the Voluntades Anticipadasand also read the suggestions for the additional texts we give below.
3. Online. To formalise the registration, you need a Spanish, digital ID of yourself, the two witnesses and any representative co-signing. You can find the direct link to the website’s login page here. The easiest way seems to be through the app Cl@ve that needs to be installed on everyone’s mobile phone. You can find instructions in English here.

If you choose the service point (SAIP), what do you deliver? Two things:

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

B The copies of the official identity documents of yourself, your two witnesses and – if you have them – your representative. An official identity document is: DNI or NIE, or passport or identity card (copy front and back) The two witnesses do not have to come to the SAIP. The representative does not have to come along either.

The SAIP ticket office is located at the Hospital de Dénia, Av. Marina Alta, s/n. along road CV725 and is open Monday to Friday from 9am-14pm.

Amend or revoke. If you have registered a will and want to amend or revoke something, you can do so using this document. The first option on this document (REVOCAR) is to revoke the declaration. The second option is to amend the declaration (MODIFICAR). In the latter case, you must additionally complete another new declaration of will (Voluntades Anticipadas) in full and have it signed by the witnesses and any representative. See above for instructions. After signing, bring the document and any new declaration of will (with all identity documents) back to the SAIP of the Hospital de Dénia.

Note: it is not compulsory to register your will, but it is recommended. That way, the will is quickly to hand in case you – or your doctor – need it. If you don’t have a will and want to make one quickly without registering it, write it down, preferably with the official document (in Spanish) but then again: do it in front of witnesses, keep the will well, tell someone where it is and make sure you have a copy for your witnesses!

Part 2. Euthanasia and sedation

Euthanasia and sedation are terms used in relieving suffering in critically ill patients, but they differ in their purpose and method:

1. Euthanasia: This refers to the deliberate termination of a patient’s life by a physician, usually at the patient’s own request, to end intolerable suffering. Euthanasia is performed by administering medication that disrupts consciousness and then shuts down the respiratory system, resulting in the patient’s death.
2. Sedation: Sedation refers to the administration of medication to put a patient in a state of diminished consciousness, often to relieve severe suffering that cannot be effectively controlled by other means, such as painkillers. Sedation can be used in palliative care to provide comfort to terminally ill patients, without the aim of ending life.

Thus, the main difference between the two is that euthanasia aims to actively end the patient’s life to relieve suffering, while sedation aims to reduce consciousness to provide comfort and relieve suffering, without the specific purpose of ending life.

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

If there is a request for help in dying, and the patient wants to apply for euthanasia, we follow the Euthanasia Act. There are then a number of steps to go through. These steps take between 30 and 40 days, and are designed to demonstrate as carefully as possible that the patient’s request is personal, firm, free, deliberate and in accordance with the provisions of the Euthanasia Act.

Part 3. Applications for euthanasia(Ley Orgánica de Regulación de la Eutanasia (LOR)

The text below makes a few references to forms (the application for euthanasia, a form to complain about a rejection and so on). You can find these documents grouped together here. There are also more details about the procedure here.

Step 1. Find a responsible doctor

Talk to your doctor first and ask if they are willing to commit to helping you die before you submit your application. You can ask any registered doctor you have access to, whether primary care or specialised care in the public or private system. Do bring this form with you at the interview to apply for euthanasia, and sign the form in front of the doctor. This is the ‘initial application form’.

A doctor can never refuse to accept the ‘first request’. If he or she personally objects, this must be made known immediately, AND your request must be signed and given to a colleague or supervisor.

Note: If the doctor who objected gave your request to a colleague, you should hear something within a few days. If not, file a complaint (to a supervisor, coordinator, health centre director, patient care or administration). See examples of how to draft a letter here:

Once the doctor has accepted your request to treat euthanasia, he or she becomes your ‘responsible doctor’. This doctor puts your request in your medical record, after which the care process starts, within the time limits set by law.

The ‘doctor in charge’ checks the following requirements:

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

If you meet these three requirements, your ‘responsible doctor’ will consult with you within 2 days about the diagnosis, therapeutic options and expected outcomes, as well as possible palliative care. Be sure you understand the information provided. The information will be explained directly to you by the ‘doctor in charge’, but it will also be provided in writing (within 5 calendar days).

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

1. Why is your suffering constant and unbearable, and with no possibility of healing or noticeable improvement?
2. How do you justify that your willingness to ask for euthanasia is serious, steadfast, repeated and unambiguous, without outside pressure?

For more information in Spanish.

Note: The doctor in charge can refuse the requested euthanasia within a period of 10 days from your initial request. You can complain about this to the Comisión de Garantías y Evaluación (CGE) up to 15 days afterwards.

Step 2. Submit a second request after 15 days.

If the application is accepted, you can proceed. No later than 15 days after the ‘first application’, you submit the ‘second application‘ to the ‘doctor in charge’. Within 2 days, this doctor will then resume the decision-making procedure, elaborating on the information obtained. 24 hours after the consultation, you then reiterate your wish to proceed with the procedure. The ‘doctor in charge’ informs, if this has not already happened, your chosen family members and possibly also the nursing ward if you have been admitted. You then sign a form indicating that you are well-informed, thus giving your consent to the next step.

Step 3. Examination by the consulting physician

The ‘responsible doctor’ must consult a ‘consulting doctor’. The latter studies your file and confirms that the requirements of the law have been met. A report is issued within 10 days of the ‘second request’. The ‘consulting doctor’ has training in the field of the disease(s) you are suffering from. The ‘consulting doctor’ can be a primary care or specialist doctor, but he or she must not belong to the same team as the ‘responsible doctor’, and he or she must not have had any previous healthcare relationships with you.

Step 4. Assessment by the guarantee and evaluation committee (CGE)

The ‘doctor in charge’ sends all documents to the Commission (CGE) within 3 days. Within 2 days, the chairman of the Commission appoints two people (a doctor and a lawyer) who examine your history again, they also interview you and your care team. A report is issued within 7 days.

Note: The ‘Derecho a morir dignamente’ foundation recommends: only accept a real interview, and not an interview via video link or over the phone. The reason is that these can give a distorted picture of your deteriorating health. The two Commission people have access to a file with all the information about you. If they do not trust the favourable reports of the ‘doctor in charge’ and the ‘consulting doctor’ and want to see you themselves, they should come to your home. Tell the Commission members 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 2 days, the President of the Commission communicates the result to you, and also to your ‘responsible doctor’. If the result is unexpectedly unfavourable, you can file a complaint with the CGE plenary within 15 days, which has 20 days to respond (if you do not hear anything after 20 days, it is to be expected that it has been rejected). To do so, use this document.

The decisions of the CGE can also be appealed to the contentious-administrative Court. Incidentally, it is probably more convenient and quicker to file a new application immediately after the rejection.

Note: The ‘Derecho a morir dignamente’ foundation recommends: Depending on your illness, you can qualify as an organ donor if you want to. To do so, however, you will have to die in hospital. If you are interested in donating organs after your death, or your body, ask for the transplant coordinator at the hospital.

Step 5. Dying aid

If the CGE’s opinion is positive, you decide when, how and where you die. The law does not regulate a time limit. The Ministry of Health’s so-called ‘Good Practice Guide’ recommends applying for a postponement of 1 to 2 months after about 15 days, but ultimately that also depends on the ‘doctor in charge’ and your care team, if any. A deferral allows you to actually choose the moment yourself, even if you may have started the application very early.

Agree the day and time with your responsible doctor and any care team. You choose how, and where you die. This can be at home, in your bed or on the sofa in the living room, on the terrace or in the garden, but also consult with your ‘doctor in charge’ and your care team, if any, so they can work in the best possible conditions. Choose the people you want to be with you, before and during the euthanasia, and choose whether your music that you want to hear, let them know how you want it. Die the way you want. You can drink pentobarbital syrup yourself, or you can open the drip that the drugs are in, or you indicate that you want to be put to sleep so that the team takes care of everything.

Note: The ‘Derecho a morir dignamente’ foundation recommends: if you get a positive message from the CGE, think about your funeral rites. If you have wishes, let your loved ones know or, even better, arrange it yourself in advance with a funeral home.

We hope to have been of service to you with this information. If you have questions about euthanasia, feel free to make an appointment with your own GP. Euthanasia is a serious matter and counselling should be in the hands of your (GP) who has known you for some time.

The information above is a compilation from various sources (as mentioned 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 patient queries 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 suffered as a result of the following text. We are not responsible for any future changes to the procedure, terms and conditions, and refer to our sources for the most current and complete information. We also ask everyone to consult the sources first in case of doubt. If you still have doubts by then, you can direct your questions to the SAIP Denia: (only patients from the Denia region, for other SAIPs please refer to this list). It is by no means our intention that patients from other practices come to us with a request for euthanasia. If you have questions about euthanasia, please do not hesitate to make an appointment with your own general practitioner. Euthanasia is a serious matter and guidance should be provided by your own doctor.

Note 1

The degree of dementia according to Reisberg (For all stages 1 to 7, see https://btsg.nl/wp-content/uploads/2020/03/GLOBAL-DETERIORATION-SCALE.pdf). Stage 5 involves moderately severe cognitive decline (early dementia stage or moderate alzheimer’s dementia). The patient can no longer function independently. He/she can no longer remember normally known facts when interviewed, such as an address or well known telephone number, the names of close relatives (grandchildren) or the name of the school he or she used to attend. There is often a disorientation in time (date, day of the week, season…) and space. A patient with a good schooling has difficulties in doing simple repetitive subtraction sums (with 4 from 40 or with 2 from 20). At this stage, there is often still notion of important personal facts about himself or close relatives. He or she still remembers partner’s name, children and own name. No help is required with personal hygiene and feeding, but there are sometimes difficulties in dressing neatly.

Note 2

A will states what should happen medically around your end of life. Such a declaration is important if (due to illness or an accident) you can no longer tell yourself. You can also describe the situation in which life is no longer worth living or valuable to you, and whether in that case you might want to end your life by, for example, a non-resuscitation declaration, or a wish for euthanasia. You can also record your wishes around donating organs or your body. Make sure your wishes can reach your family and doctors.

A living will specifically deals with the situation when you are still alive but can no longer properly look after yourself due to a condition. Like a will, it deals primarily with financial matters. Think, for example, about managing your bank accounts. Personal matters, such as who will look after your house and pets when you are in hospital or no longer able to look after them properly, are also written in your living will. You can also write down your wishes regarding your farewell. Make sure your wishes are known to your next of kin.

A will is drawn up by a notary public. A will takes effect after your death, and deals primarily with financial and legal (property) matters. A will enters a national register; any notary in the Netherlands can also view wills drawn up elsewhere. You will receive a copy, so the original can always be found.

A codicil is a (often handwritten) document in which you can write what should happen to your personal items after your death, such as your jewellery, a particular painting, your collection of stamps or your clothes. You cannot bequeath money or a house through a codicil. Things of financial importance are part of the inheritance and are allocated or distributed by will. However, you can write in your codicil what your wishes are regarding your farewell.

Make sure your wishes and your last will are listed somewhere where they can be found for your next of kin.

Note 3

Foundation’s suggestions ‘Derecho a morir dignament‘ in Spanish, original text.

1. Solicito que se ponga fin a mi vida cuanto antes mediante una eutanasia.
2. I consider constant and intolerable physical or psychological suffering, incompatible with my personal dignity, when serious, chronic and disabling conditions such as neurodegenerative diseases (dementia such as Alzheimer’s 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 value system. 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. If any health professional should 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.

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