The script of our life is not written, but we can ensure that, at certain vital moments and when the end approaches, our health wishes are fulfilled. That our decisions prevail and make this process easier for our loved ones are some of the reasons to formalize the advance directive document (DVA). “They are the instructions or wishes regarding the health-related care and treatment provided by a person,” defines Dr. Carles Martin Fumadó, forensic doctor and president of the Catalan Society of Legal Medicine and Toxicology.
Also known as a living will or advance directive document, the DVA is “a legal tool that allows the patient to continue exercising personal autonomy at the time in which said person finds themselves, whenever this ends up happening, in a situation in which “The circumstances do not allow him to personally express his will,” defines Dr. Martin.
Thanks to advance directives we can exercise the right to decide on the medical care desired, the designation of a representative, describe what medical treatments we would accept or reject at the end of life and request palliative care, among others. In the same document, wishes can even be expressed such as organ donation, donation of the body for scientific research or wishes regarding burial or cremation.
“I have thought about my family, about making it easier for them to do what they should do when I am sick, and about myself because I know what I want and what I want to go through,” confesses Lucas Ruíz Ramírez, who at 54 years old already has the ID document. advance wills. “I already knew that document from the palliative unit. One day, my pulmonologist asked me in the consultation if she had decided what she wanted to do. Since she was clear about it then, I did it. It was nothing planned,” he explains.
And Lucas knew that his life expectancy was not going to be like that of the others. At the age of 47 he began to limp and, three years later, in February 2020, he was diagnosed with amyotrophic lateral sclerosis (ALS), an incurable disease that progresses towards progressive worsening. Today, Lucas can no longer write with his hands: he uses the computer by marking the letters with his eyes. This ALS patient, a member of the Luzón Foundation, is very aware of the rapid evolution of his illness, he just wishes that his loved ones did not carry the burden of resolving the end of his life.
“For me it was very simple, since I had been advised before and knew what it involved,” he says. Once he completed the procedure, Lucas felt “very good and calmer, since at any moment my people know how they have to act with me, respecting my decision,” he says. “I recommend everyone do it. In my case, with my illness, it is a way to make my own decisions and not leave that difficult ordeal to my family. In addition, you can revoke the decision you have made at any time,” explains Lucas.
In this sense, the president of the Catalan Society of Legal Medicine and Toxicology highlights that the document “does not become effective until the person who has signed it loses his or her decision-making and communication capabilities. It may happen, therefore, that it never has to be used. In the same way, for many reasons, such as the appearance of an illness, among others, it makes us change our mind. In fact, it is very convenient that it be reviewed and renewed periodically.”
However, despite its advantages, the use of DVA has not yet penetrated sufficiently into our society. The data from the National Registry of Advance Directives – updated as of January 2024 – indicate that, despite the fact that in recent years the number of advance will documents has increased enormously and that in Spain the total reaches 454,533, the population that has of this tool today is less than 1%. Furthermore, there are differences between autonomous communities, with the inhabitants of Navarra, the Basque Country and Catalonia being the ones who have opted for this measure the most.
In the case of Catalonia, where there are already 127,823 records, experts expect the figures to grow thanks to Law 2/2024, amending Law 21/2000, on the rights to information concerning the health and autonomy of the patient, and clinical documentation. “It involves a novelty that we understand will greatly facilitate the formalization process. Previously, formalization was required before a notary with the intervention of three witnesses, and in Catalonia, from now on, a third possibility of formalization is added, before a health professional in the field of primary, hospital or social health care, preferably from the centers of reference for the patient”, explains Dr. Martin.
In this sense, the role of primary care will be key to the dissemination and knowledge of this legal tool among patients. For this reason, the Mémora Foundation, the Luzón Foundation and the Institute of Medical Training and Leadership of the Col·legi de Metges of Barcelona have promoted specific training aimed at health professionals and aimed at raising awareness of the basic aspects of the document of advance wills. Although there is still much to do, “as a society we have definitively embarked on the path towards early decision and we are losing the taboo of death,” says the doctor. There is no one better than yourself to decide about your own life until the end.
This course reflects the firm commitment of the Mémora Foundation to the training of professionals in aspects related to the end of life and improvement of care. Also as a result of its commitment to raising awareness, it has released a video that can be viewed on its website and YouTube channel to resolve doubts about the advance directive document. Actions like these are added to other initiatives for which the Foundation is a reference, such as accompaniment to people and their families, professional support during grief and the development of awareness campaigns so that society perceives death as part of life.
In addition to the DVA, there are also other types of decisions focused on the end of our life, such as pre-planning the funeral. There are many people who have been distressed when having to take on certain procedures at such delicate moments. Planning the funeral in advance is a way to free the family from financial, administrative and emotional burdens. At Mémora they have the Electium service, which allows us to leave everything organized and paid for so that, when the time comes, our loved ones can focus on what they truly need: being with family and friends.