Should we tell a terminally ill person that he is dying?: how doctors act in Spain

How do health professionals approach the end of life of patients, and their knowledge about death? “Terminal patients have as much right to know as not to know,” says a psychologist expert in palliative care In Spain, laws and ethics regulate communication with the patient, but there are no specific protocols that allow knowing how much information each patient wants When the case arises Would you like to know that you are going to die? Or, would she prefer to leave this world without knowing it? These are questions that most will surely have asked themselves at some point, or will at some point in their lives. Thousands of professionals deal with these issues daily, those who communicate bad news, or the end of a life. Doctors, psychologists, therapists who treat the terminally ill, people who sometimes die in hospitals, and who must know how to distinguish how much information each patient wants. It is not easy, but it is necessary. Because, as Helena García-Llana, psychologist and vice president of the Spanish Society for Palliative Care (SECPAL), says, “people have as much right to know as not to want to know.” The key is to distinguish that desire, and adapt to it without cause added pain to what is surely the worst moment of someone’s life. “It is very studied, it is a very stressful communication and sometimes there is not enough training in the professionals to report this type of news,” says García-Llana, who also recognizes that these difficult conversations raise unanswered questions that all professionals would like to be able to answer. .Elia Martínez, an oncologist and member of Communication for SECPAL, has had too many times to tell someone that they are not going to live anymore. She sighs deeply when she affirms that “it is very difficult, one of the most complex aspects of medicine. It is easier to apply a treatment and speak little.” But she doesn’t, because she doesn’t think it’s the right thing to do and because her experience and her training say it’s better to know. As far as one wants, but knowing: “My opinion is that the patient must, if he wants, know that he is going to die. In an appropriate time and manner, of course. What I am not in favor of is giving deadlines, because it generates an emotional charge that is sometimes not fulfilled because each illness and each patient is different. I challenge them to live day by day. But knowing your illness is a right: to decide whether or not to treat it, to solve pending issues. If I don’t tell him how he is, he will have things pending, he is closing his life cycle without meeting needs. It’s not fair and it shouldn’t be done.” How to know what each one wants to know And that is, perhaps, the greatest difficulty: knowing what the patient wants to know. “Accompaniment is very important, and being able to work with both the patient and the family on that need for information: create a warm, safe environment where emotional expression is facilitated. And not fall into the avoidance of death that is so cultural” , values ​​the SECPAL psychologist. Because information reassures: “It must be understood that all studies support that information reduces anxiety. Although at first it can increase it, in the medium and long term it promotes control, because no one can adapt to what they do not know. that knowing generates serenity, so the important thing is to accompany the contents of the information but also the feelings it generates” says García-Llana. And many times the only way is to ask, directly. It seems hard, and it is, but the professionals involved say that it is the best. “We know to what extent a patient wants to know, generating a relationship of trust, respect, bond, exploring, asking open and focused questions: how far you need information, help us inform you, how far you have been told so far”, outlines the psychologist . And the SEPAL oncologist agrees: “In oncology consultations we make a preliminary approach, sometimes we ask the patient directly how far they want to be informed. There are some who want to know everything but others say that they should tell their wives, the And when this express wish is not fulfilled, we rely on our experience, knowledge.” And sometimes the most difficult question is asked when death is not even close, when it is just glimpsed as inevitable: “What would you think you palliative sedation?”, Elia Martínez has had to ask, more than once, to patients who were not terminal, but who also had no chance of being cured. And it is at this point that this previous work, affirms the doctor, demonstrates all its relevance: “It depends on the neurological situation, on their manifest desires, on the feedback from the family. We base everything on a very fluid communication, on having a relationship of broad trust, in knowing the patient beforehand”. The communication of bad news, the pending issue in the García-Llana studies is clear and forceful when she affirms that more specific training is missing in the curricula of health professionals on the communication of bad news. “All palliative care professionals are trained in communicating bad news. Oncologists are also aware, but it is only formally included in the curricula of palliative medicine, and in reality there are many professionals who face such tough interviews in their practice. You cannot go only to the law, or to the code of ethics, because they do not address more than the minimum of the right to information and the doctor’s duty to give clear and truthful information, “he considers. And in hers day by day, Martínez misses documents that help her know what to ask to find out the patient’s desire for information. Because “there are external, general protocols, but there are no specific documents adapted to the specific population of each center, or there are very few. And above all, we have no way of knowing exactly the feeling that we generate in these patients. For example, there are questionnaires to address many problems in oncological processes, to be able to adjust them to the patient. There are psychological health, nutrition… But there is no questionnaire that helps us to be able to adapt the communication of bad news to the specific circumstances of each patient “. It is a delicate issue, since she herself recognizes that “not all people are the same, they have their personality, their history, their past, their circumstances. With this, the way of giving information cannot be generalized. And we have no way scientific, protocolized, measured, to know if that information has been given correctly, if it was what the patient needed, or not”. She repeats that she is in favor of talking, of communicating, since “we do not practice the paternalistic medicine of hiding what is emotionally painful. But it is important to know how to manage information, how to communicate it. Information management is important.” What the laws and ethical codes say The law and the code of ethics for doctors establish a minimum, a framework in which there is enormous room for manoeuvre. Rebeca Mondéjar, member of the Continuous Care section of the Spanish Society of Medical Oncology insists that the patient, if he is trained, “is the one who has the right to receive information from the people involved in his diagnosis and treatment. And it is done this way because the norm determines it that way”. The patient autonomy law defends patients whether they want to know or not, and reads: “Patients have the right to know, on the occasion of any action in the field of their health, all the information available about it (. …). In addition, every person has the right to have their wish not to be informed respected”. And in the medical code of ethics, in article 15, it is specified that “information must be transmitted directly to the patient, to people by designated by him or his legal representative. The doctor will respect the patient’s right not to be informed, leaving a record of this in the medical record.” Mondéjar explains that in practice these ambiguous legal and ethical frameworks are based on four aspects: Human: we must transmit the information gradually and with empathy and from the deepest respect for the patient and their environment. Technical: covers the medical knowledge of the process and the final diagnosis together with a treatment or care plan s.Ethical: based on the principles of bioethics: Principle of Autonomy: right to decide knowing the information. It is the basis of informed knowledge. Principle of non-maleficence: do not do evil and avoid it. Principle of beneficence: promote the good of the patient. Principle of justice: ensure equity. Legal: law of autonomy of the patient. “First, the patient’s capacity is evaluated and if he is capable (in most cases), the first thing we do is make sure how much information the patient wants to receive by asking open questions exploring these wishes, and we ask if he delegates to a family member. Once defined this, we transmit to the patient or family member defined by the patient, the information in a gradual, empathetic way and leaving space for the emotions that may arise and to resolve medical doubts”. Because, yes, emotions are part of a patient’s relationship with her doctor. The three professionals in this article have dealt many times with the pain of their patients, their families, and duels. In a culture that closes its eyes to death, it is part of the daily life of these professionals, who do not pronounce on whether or not someone should be told that they are dying, but rather adapt their responses, such as their work, to each patient. To each person.