One of the questions on my final Internal Medicine specialist exam dealt with Amyotrophic Lateral Sclerosis (ALS), a neurological disease with no specific treatment or foreseeable cure that progressively limits the person’s movements without affecting their cognitive level and with a fatal outcome. in about two years. It is the disease suffered by the British theoretical physicist Stephen Hawking and that, thanks to technological gadgets created in an exceptional way for him, it was possible to achieve a long survival.
A few years after graduating as a specialist, while practicing Emergency Medicine, I had to face the diagnosis of this disease in a middle-aged woman from Matanzas. Together with the neurologist and with the result of the electrophysiological examination that allows us to identify ALS, I had to tell him about the irreversible course of suffering and certain death in a few years.
But, what happens in Cuba and many parts of the world with people who suffer from ALS and other fatal diseases without having the privileges of the famous scientist?
With diseases that cause suffering and agony in my patients I have had to deal for twenty-nine years of professional practice and also in my personal life. In many cases, palliative care does not even work and it is not uncommon for intensive care to be provided in our country due to the complications it produces.
Is it ethical for a person to know in advance the irreversible course of an incurable disease and not be able to exercise the human right to end their existence in a dignified manner? Is it a moral value to subject family members and caregivers to such agony? How many real benefits justify the allocation of resources for the treatment of these ills?
These and other questions arise when we consider death as a close possibility, despite the fact that it is a cultural and historical construction that can have different interpretations and is, above all, a potential fact from birth.
Death is constitutive of vital experience. Our existence is traversed by the finitude of life; but our culture is impregnated with mournful meanings about death. She is loss, sadness, emptiness, nostalgia and silence. It is part of our ontological vulnerability (related to our existence).
In Cuba, the way in which, culturally, we experience death does not come directly from Spanish colonization, but from the Greek ethical tradition of Aristotle and Hippocrates. Although not all Greek philosophers approached death and suicide in the same way, opposition to offering a painless and dignified death or suicide for those suffering in agony from incurable diseases prevailed.
For Aristotle, suicide and causing the death of those who suffered from fatal and irreversible morbid processes were an offense against the State, while staying alive was a civic duty.
For his part, Hippocrates, the father of contemporary Western Medicine, included in the oaths of its exercise the prohibition of euthanasia and the aid to suicide.
Later, with the rise of stoicism, its highest representative, Lucio Anneo Seneca, equated euthanasia with dignified and glorious death, as well as justifying suicide to avoid a worse death.
The Christian personalist ethic has influenced the absolute value of life to this day. Values about life and death run through our culture and all social structures.
However, as a cultural construction, death has been resignified in our imagination. I have perceived it in my professional practice and in the opinions on the death penalty and euthanasia issued when the preliminary draft of the Constitution of the Republic was debated.
It was recently learned, through the Minister of Public Health, that the draft of the new Health Law will include euthanasia (Broadly stated as the human right to a dignified death through professional medical procedures).
What the Minister of Public Health defines as “revolutionary” represents a profound paradigm shift towards respecting patient autonomy and will face great challenges. Some of them are explained below.
Paradigm shift
The Cuban model of health care is based on a predominantly authoritarian and paternalistic paradigm, which imposes beneficence (doing good, even if it is to the utmost) over the autonomy of the patient. Concealment, silence, strict adherence to action protocols, biologicism, evasive attitudes, and poor communication between professionals and users undermine the patient’s autonomy in making responsible decisions. The right to die with dignity is attached to autonomy and is an act of justice.
Although the relatively recent use of informed consent to perform certain high-risk procedures seems to give patients greater participation in joint decision-making, in our context it is formally applied and is perceived as an instrument of “legal protection” against complaints. , damages and complications.
The use of informed consent should be extended to decisions that protect patients, without coercion, with transparency and the possibility of revocation, especially when it comes to ending life through medical procedures. More than informed, consent would be a process (not the mere signing of a document) that turns it into educated consent.
Euthanasia and assisted suicide are procedures that emerge solely from the will of the patient, but that depend on legal regulations that would have to be modified in Cuba, especially in the Penal and Civil codes. We have a Penal Code that legalizes the death penalty, but makes euthanasia and assisted suicide illegal.
If these procedures and the necessary regulations to carry them out are approved, in the case of the patient with ALS who heads this text, none of these alternatives should be prescribed or enunciated by myself or another health professional, since in principle it depends of the will and responsible autonomy of the patient.
It is probable that the exercise of the human right to a dignified death in Cuba will be made possible through a court ruling to be applied by professional personnel trained for such purposes, and not linked to patient care.
The place of bioethics
Another challenge is the poor ethical training of our health professionals. Whoever has reached these lines is likely to have perceived philosophical elements that are not well received even by many professionals in our field. In the best of scenarios, medical ethics in our environment is reduced to the enunciation of the ethical principles of autonomy, beneficence, non-maleficence and justice; or to the deliberation of relational and personal conflicts between the professionals.
If the teaching of Medical Ethics or Bioethics (as new knowledge) gained more importance in curricular designs, these principles could begin to be used for moral deliberations in all end-of-life care processes.
In this order of things, the existence of the Unesco Declaration of Bioethics and Human Rights (2005) is not generally known by the biomedical and legal profession; which, in addition to the aforementioned principles, endorses respect for human dignity and human rights, benefits and harmful effects, consent, people lacking the capacity to give their consent, respect for human dignity and the personal integrity, privacy and confidentiality, equality, justice and equity and non-discrimination and non-stigmatization, among others.
The application of medical procedures that could end life would be more comprehensively based and would recognize human dignity as a guiding principle in making such a complex decision.
From the legal and biomedical point of view, the implementation of respect for advance directives is required as a central element of the recognition of autonomy and responsibility, as long as the person enjoys rational capacities that allow them to make future decisions about the end of their life. before natural deterioration from the disabling disease occurs.
Other challenges
There is a danger of misdiagnosis, difficulty in knowing when the request is rational, or if the patient is free from coercion by family or physicians.
The legalization and implementation of euthanasia requires paying attention to the quality of palliative care; that is, to non-curative actions and interventions that alleviate the suffering of the bereaved at the end of life.
Many people do not accept suicide or euthanasia because of their religious beliefs or mere conscientious objection; others would always have the benefit of quality palliative care and not death as the definitive solution to their suffering.
Our Health System faces the challenge of not having accessible or protocolized palliative care services at all levels of care.
These minimal care are less expensive than intensive care. The relief of suffering includes, among many measures, nutrition, the treatment of chronic pain and respiratory distress, the limitation of diagnostic and therapeutic actions that are not useful, comprehensive psychological assistance and the administration of sedatives with palliative intentions until death. natural arrival of death.
The latter is frequently confused with euthanasia and many professionals and patients are unaware that it is a legal treatment in our environment for the final course of chronic diseases.
It should be remembered that in Cuba cancer is among the leading causes of death, but it is not the only one. He also died of pulmonary emphysema, chronic heart failure, liver cirrhosis, among other diseases.
With the aforementioned diseases, treatments are frequently applied that do not alleviate the intensity of the agony, but rather, in clear violation of the principle of human dignity, prolong it and cause a poor quality of life.
The new Public Health Law promises to include ethical and values training and hopefully it will be a legal instrument with a human rights approach, based on a new end-of-life care paradigm.
Euthanasia in Cuba would be applicable when the right to live with dignity is respected until the last minute and the right to leave life in a dignified manner.
