Deontological responsibility for Alzheimer's patients

Gonzalo Herranz, department of Bioethics, University of Navarra
Intervention in the Symposium "Ethics, legal aspects and palliative care".
Organized by the National Alzheimer's lecture
Pamplona, Saturday, November 8, 1997, 17:30. Hotel Iruña Park, conference room A.

Greetings and thanks

Introduction

It falls to me to talk about the deontological responsibility towards the Alzheimer's patient. So, the first question could be: what do the codes of ethics and deontology say about this?

To begin with, it should be noted that, as expected, none of the codes makes reference letter specific to Alzheimer's disease. This is the conclusion to be drawn from a review of the Codes of Medical Ethics and Deontology in force in 40 countries in Europe, the Americas and Oceania. However, they do contain some ideas that can help us to determine the extent and intensity of the physician's duties towards the Alzheimer's patient.

These are three standards that, more or less explicitly, articulate the terms of deontological responsibility to Alzheimer's patients:

the first is the non-discrimination mandate;

the second is the rule of proportionality between medical respect and weakness;

the third is the canon of therapeutic compliance.

These three deontological norms have much to do with the bioethical principle of justice. I prefer to consider them as manifestations of the medical virtue of justice.

1. The mandate not to discriminate

In 1948, the World Medical Association ( association ) promulgated its fundamental Declaration of Geneva. The text of 50 years ago stated: "I will not allow considerations of religion, nationality, race, party or social class to come between my duty and my patient". The passage of time has improved it. The text in force today, from 1994, says: "I will not allow considerations of political membership , social class , creed, age, illness or disability, nationality, ethnic origin, race, sex or sexual orientation to come between my duties and my patient".

Since 1948 and with rare unanimity, all the codes have accepted, more or less literally, this duty, so human but sometimes so difficult to fulfill, of the physician to refrain from any discrimination towards his patients.

Two of these non-discrimination criteria are of direct concern to us:

I will not allow age considerations to come between my duties and my patient. Thus, whether one is ten, fifty or ninety years old is ethically irrelevant: one cannot separate the sick into different categories of ethical respect linked to age. Human beings of all ages are equally worthy and ethically significant.

I will not allow considerations of illness or disability to come between my duties and my patient. Dementia may impoverish brain function and sap the capacity of my patient's personality to flourish, but no illness or disability can create in me ethical repugnance or diminish the ethical respect I owe him.

The physician who lives the virtue of justice aspires to treat all his patients according to a principle of equity, which is independent of their age or the disease they suffer from. Moreover, he or she is convinced, both theoretically and operationally, that caring for everyone, including victims of Alzheimer's dementia, is part of what society demands of the physician, of what the physician must contribute to the construction of a just community free of discrimination. This means that the physician must have and show the same interest in an Alzheimer's patient as in a child, that he/she must explore one as diligently as the other, that he/she cannot let himself/herself be carried away by the inhibition, discouragement, pessimism that the combination of senility and dementia so easily evokes. Thus, deontologically, all human beings are equally worthy, all equally respectable. To each must be given his due.

What happens when a doctor excludes an Alzheimer's patient from treatment? Several things can happen. The physician may commit a gross injustice if he denies intervention simply because the patient is an elderly demented person. Such an injustice occurs when the physician is not interested in or does not treat an Alzheimer's patient with pneumonia caused by germs sensitive to an antibiotic available. But he is not unjust and acts with deontological correctness when he omits an intervention, not because he despises the patient and considers him unworthy of it, but because, for serious biological reasons, he knows that such an intervention is useless. For he is not unaware that men and women, children and the elderly, while ethically equally worthy, are biologically different. As the Code of Medical Ethics of the American Medical Association association states, age and, in our case, Alzheimer's disease can act as criteria for making judgments about therapeutic indications. But great care must be taken to ensure that these criteria are genuinely medical. If they are non-medical criteria that create a medically unjustified inequality of opportunity, then they are an unacceptable instrument of injustice and discrimination.

But medical justice does not consist only in distributive justice, in therapeutic equanimity. There is in the medical vocation, in medical ethics, a second essential element that imposes, beyond justice, a kind of preferential option for the weakest: the duty to care for them with special dedication and care. It says with great ethical courage the article 34 of the Deontological Code of the Spanish Nursing: "In the establishment of health promotion programs and in the distribution of available resources, the Nurse will be guided by the principle of social justice to give more to the most needy". And concludes with fearlessness: "The concepts of social justice are something more than paternalism".

2. Proportionality between ethical respect and human weakness.

We are not able, for the moment, to prevent or cure Alzheimer's disease, but we can alleviate it. It is therefore, for the time being, much more a matter of palliative than curative medicine.

The inevitable question is: how to ethically justify a medicine that does not cure and that, sometimes, in the face of advanced Alzheimer's, leaves us in doubt as to whether it comforts or relieves? How to justify a medicine that is often aimed, as much or more than treating the patient, at giving moral support to those who care for him or her?

Curiously, the codes of medical ethics of 29 of the 40 countries studied impose palliative medicine as an unavoidable obligation. These are the most modern codes, those fifteen years old. In the remaining cases, i.e., in the oldest codes, the duty not to abandon the patient is established. Only the code of the Royal Dutch Society of Physicians refrains from referring to attendance to the incurable patient.

The medicine of palliation and consolation emerges, in my opinion, from a basic component of the physician's ethics: the respect and typically medical care for extreme human weakness. The physician cannot ignore the victims of incurable disease, the terminally ill. In a certain sense, the time has passed when one could say: There is nothing more to be done.

The reason is obvious: Medicine and the physician are for the weak. This is a mother idea, a fruitful principle, which is at the anthropological root of Medicine, as well as in the impulse for, and in the advancement of, medical science. The presence of the weak has been the permanent impulse to awaken in many the professional vocation of doctor or nurse; it is the social stimulus that pushes to try to improve the attendance that we provide; it will be more and more the incentive that moves to investigate the causes and remedies of the disease.

In the Christian deontological tradition - one cannot say Hippocratic, since respect and care for the incurable was something totally foreign to pre-Christian medicine - being weak is degree scroll sufficient to receive protection and respect. The doctor/patient-incurable relationship presupposes the recognition of the essential fragility of man: of the deterioration of the body, of the humiliating symptoms, of the status of total dependence, of the inevitability and proximity of death (or, sometimes and paradoxically, of its sometimes exasperating remoteness).

Faced with the Alzheimer's patient, it is necessary to solve an enigma: that of discovering and recognizing, under such an impoverished and weakened appearance, all the value of a human being. Dementia eclipses the previous dignity of the man or woman who is its victim. And it also destroys the project of noble old age that each of us dreams of.

The Alzheimer's patient requires a specific interpersonal relationship from the physician and relatives, which includes both technical care and, above all, human presence. There is an expression, res sacra miserwhich expresses in a magnificent way what is special about man in this status, as it translates marvelously the coexistence of the sacred and dignity of every human being with the misery caused by psychic and organic deterioration. This felicitous expression shows us the patient as someone simultaneously invested with nobility and indigence, as someone who is inviolable, but for whose ills we have no other remedy than palliation and accompaniment.

This is, in my opinion, the ethical basis of palliative care, never useless, never economically unjustified. In medicine, there is an ethically binding proportionality between weakness and duty of care: the greater the weakness, the greater the duty. This was magnificently expressed by the French committee Consultatif pour l'Ethique des Sciences de la Vie et de la Santé when, in 1986, in its report on experimentation on patients in a chronic vegetative state, it said, contrary to the opinion of some, that "these patients are human beings who are all the more entitled to the respect due to the human person because they are in a state of extreme fragility".

I will now turn to the third point:

3. The canon of therapeutic compliance

Dementia is something much more serious than the cellular, organic and psychic disorders in which it manifests itself. Above all, it is a crisis of humanity, a crisis final that puts Medicine and physicians at test . Alzheimer's disease puts medical ethics at test , as evidenced, on the one hand, by the utilitarian rationalization of the patient's withdrawal .

A certain utilitarian ethic rejects the sacredness of the incurable patient. In Alzheimer's patients, it sees only their negative economic balance, their disturbing uselessness. It is blind to their human dignity, real though eclipsed, during that long and painfully sterile twilight of life. Euthanasic death is presented to the utilitarian as the ideal solution, dignified and compassionate, efficient and neat, both for the precariousness and dependence of the patient, and for the sterile and dead-end application of the caregivers.

Along with the danger of withdrawal, there is the danger of therapeutic zeal. This rejects the incurability of the hopeless patient. Leaving the straight path of the clinical essay , it exercises an exasperated, voluntarist activism, blind both to the obvious fact of the biological ruin of the patient and to the imperatives of biomedical experimentation. If respecting life means accepting it in its limitation and finiteness, stubborn obstinacy is, at bottom, a lack of respect for persons, a capricious abuse of the professional degree scroll .

The abandonist and fierce positions coincide in two things: in not understanding the value of palliative interventions, and in being refractory to the hope of the scientific research .

The physician needs a kind of binocular vision that allows him to integrate and superimpose the image of biological precariousness of an injured system beyond repair, with that of a human being who cannot be abandoned, who must be respected and cared for until the end. This double vision is necessary in the physician, as required by his double condition as a caregiver of mankind and a cultivator of natural science.

But medicine cannot resign itself. It may lose the battles of lives for which it has not yet found a symptomatic remedy, but it will win the war of palliative medicine. It has always been stimulated by the presence of suffering to try to clarify the causes and mechanisms of the disease and to find a remedy. The extensive demographics of Alzheimer's dementia and the human intensity of the handicap it causes are promoting efforts by research that have already begun to bear fruit. It is becoming clearer every day that it is urgent for the patients who suffer from it, and a priority for society, to develop a policy of research that, while respecting the freedom of researchers, tries to clarify the biological, preventive, therapeutic and humanitarian aspects of the disease and of Alzheimer's patients. Ethics has much to do here, because the Alzheimer's patient, as a subject of experimentation, forces us to review core issues of biomedical ethics: we must develop safer and, at the same time, more effective mechanisms to replace informed consent, which can never do without the rectitude and responsibility of the team researcher. These and other issues can be discussed at discussion.

Thank you very much.