Studi Umbri

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Science

A Good Opportunity. The Act of Care at the End of Life

Vol. 10, n. 1 (2018)

A 21-minute read


In the past I took an interest in the psychological aspects that come into play in the field of oncology, and this happened just after my father's death from hepatocarcinoma.
The adjective that seems to me most fitting to convey what my experience was in that situation is Devastating.
And yet, I feel a sense of deep gratitude toward my father, who allowed me to seize the opportunity, the "good opportunity," to take part, for the first time, in the process of a person's detachment from existence in life.
A few months before this event my son had been born, and I had had the "good opportunity" to take part, for the first time, in the process of a person's rooting into existence in life.
The adjective that seems to me most fitting to convey what my experience was in that situation is Exhilarating.
In both situations I felt emotionally involved through the family bond and, at the same time, called upon to keep my professional gaze active.
In one case (my father's death) I was in my own home, the home of my family of origin, and, back from the hospital where "there is nothing more to be done," I had turned my parents' room into a hospital hybrid with an IV stand, syringes, a stethoscope, a sphygmomanometer, a chemical toilet and so on.
In the other (my son's birth) I was in a hospital, but comfortably lodged in a room furnished like a hotel, with a double bed, a large bathroom with a birthing tub, a stereo, a bookshelf, a refrigerator and a telephone.
Everything was arranged so that the birth would take place in the least medicalized way possible, while still ensuring an adequate and ready level of intervention should the need arise. The welcome in a domesticated area (read: with the atmosphere of a home), extended to both spouses, was very reassuring, but opening the door and finding oneself in the middle of the ward of a traditional hospital also contributed appreciably to our peace of mind.
In the first case, by contrast, that "there is nothing more to be done" decreed the exit from the scene of medicine as an organized system of knowledge, practices and procedures meant to counter, antagonize, fight the disease, and it left me, the sole and last outpost with blunted weapons, to delay the event as long as possible, to assist, to monitor, to guide the course of the illness?
As I set up the room with the material kindly provided by the hospital, with my father, swollen with ascites, already in the bed, I felt that we were like those soldiers left behind to slow the enemy's advance, waiting, without hope, for an inevitable capitulation.
From that moment, and during the countless sleepless nights that followed, I gradually became aware that I had been trained and drilled to practice a "belligerent" medicine. A medicine made of "the fight against this or that disease," of "the defense of health," of "health, therapeutic and preventive safeguards," of antibodies as smart missiles seeking the antigenic "target," of inflammations as fires, of neoplastic cells as raiders, of metastases as outposts capable of opening conflicts on new fronts.
A medicine capable of pumping up the physician's heroic omnipotence to unbelievable degrees, but also of bestowing immense frustrations like oceans of boundless powerlessness.
A medicine, a system of knowledge, that by keeping me focused on the symptoms and on the disease to be "fought" helped me, in that circumstance so particular for me, to defend myself against having to consider the person of my kinsman in his need to be accompanied through the experience of the last stretch of existence in life.
Unlike the other family members, I could take refuge in my professional role and avoid, at least in appearance, letting what my father was going through evoke in me the specter of mortality, of my own mortality, reflected in the undeniable evidence of his own, which was drawing to its fulfillment.
Quoting Savater "Other men will die, but that happened in the past/which is the season (as no one is unaware) most propitious to death"[1].
Borges says, at the beginning of a short and magnificent apocryphal poem:
"Is it possible that I, a subject of Yaqub Almansur,/should die as the roses and Aristotle had to die?".
However irrefutable the statistics may be, and however much our own body never stops sending us unmistakable signals, our death seems to each of us little more than a hypothesis, inwardly rather implausible. If you will, we know that we will die, but we do not believe it.
On this subject Sigmund Freud is assertive:

"Indeed, one's own death is unrepresentable, and every time we try to imagine it we can observe that in reality we go on being present as spectators. This is why the psychoanalytic school has even been able to affirm the assertion that there is no one who, deep down, believes in his own death, or, what amounts to the same thing, that in his unconscious each of us is convinced of his own immortality"

(S. Freud, 1915: Considerazioni attuali sulla guerra e la morte. in Id., Opere, vol. 8, Boringhieri, Torino 1976. p.137)

I cannot quite define, today, how far I was then acting in the role of a physician when I proceeded to measure various biological parameters, to devise complex strategies to prevent the collapse of serum protein levels and the further spread of fluids into the peritoneum.
Why was I doing it? And why did it seem to me inevitable that I had to do it?
Was I attending to the person of my father, or to his disease?
Was I trying to counter his illness in the omnipotent illusion of being able to slow, if not to cancel, its outcome?
By pre-occupying myself with his disease, was I perhaps granting myself the psychological ease of not attending to his imminent death and to our own, his as well as mine, undeniable mortality?
And above all, did that component of my action, technical-scientific let us say, correspond to something that, even if only in part, I could call "care"?
To care for the disease, for its course, for its progress through the body, or to care for that person who, in turn, with such care had raised me?
And the two things together, since they both appeared necessary, would it have been humanly possible to enact them at the same time?
Thus Hyginus narrated:

"Care," while she was crossing a river, caught sight of some clayey mud; pensively she gathered a little of it and began to give it form. While she is intent on establishing what she has made, Jove intervenes. "Care" begs him to breathe spirit into what she had made. Jove willingly consents. But when "Care" claimed the right to impose her own name on what she had made, Jove forbade it and demanded that his own be given instead. While "Care" and Jove were disputing over the name, Earth too intervened, demanding that her own name be given to what had been made, because she had given to it a part of her own body. The disputants chose Saturn as judge, who conveyed to the contenders the following just decision: "You, Jove, who gave the spirit, at the moment of death shall receive the spirit; you, Earth, who gave the body, shall receive the body. But since it was "Care" who first gave life to this being, as long as it lives let "Care" possess it. As for the controversy over the name, let it be called "homo," since it is made of "humus" (Earth)[2].

What Hyginus expressed is a poetic intuition that some twenty centuries later found confirmation in ethological and psychoanalytic observations of great and fascinating importance. First of all, the observations of René Spitz (from the 1950s) on the deficiencies (total or sub-total) of maternal affective care affecting newborns. I am referring here, in the terms of "maternal affective care," to the carrying out of affectively significant actions that result in gratifying sensory experiences such as touch, embrace, gaze, voice, and so on.
Spitz carried out his research in institutions for abandoned infants.
Where he could not find a substitute mother for each of the little guests, even had that person been a man, he proposed mechanical feeders; but he had to observe that, even in the presence of food, warmth and cleanliness yet in the absence of maternal affective care or of an adequate substitute, the infant nonetheless developed an "anaclitic depression," also called abandonment syndrome or hospitalism, clinically characterized by the constant succession of the following phases:

  • the child's crying becomes more monotonous and less modulated; it turns into a scream;
  • after 2-3 months, in the absence of maternal affective care, the child becomes sleepless, refuses contact, suffers an arrest of psychomotor development; the expression of the face becomes rigid; it frequently assumes the position that Spitz considered "pathognomonic": it lies for long hours face down with little reaction to stimuli. Meanwhile it undergoes weight loss and a collapse of the immune defenses;
  • if it persists beyond 3 months this condition can lead to irreversible mental impairment; at times also to severe general organic decline (marasmus) and even to death.

In relation to Spitz's studies, and to their integration with the findings produced by John Bowlby and known as "attachment theory," we have come to place the child's affective need at the level of fundamental biological needs and to define the vital dependence on maternal care in the essential terms of "primary hunger for love" (Levy).
Thus, even while providing for fundamental biological necessities such as water, food, warmth and adequate hygiene, which can be obtained by organizing and administering a "sufficiently good" hospitality according to logical and technical-scientific criteria, in the absence of any conveyance of affection, in the absence of those elementary affective functions that account, not by chance, for our belonging to the group of the mammals, "life," having ascertained the "bio-illogicality" of the environment, carries out a progressive disinvestment from the biological body, gradually declining, with ever less reparable harm, until it dies out.
In other terms, if a "human organic device" (but also a merely organic or living one) is left without care it goes into suffering, and the harm that may result will be all the more serious the tenderer the age of the deprived one and the more prolonged the absence of care or of its vicarious replacement by another mammal.
Among the animals, man, having presumed that he could change his postural arrangement, that is, having been compelled by evolutionarily significant contingencies to pass to bipedalism, underwent a number of transformations:

  1. Restriction of the diameters of the pelvis so as to ensure valid support for walking;
  2. Transformation of the forelimbs of the quadrumana into the upper limbs of the bipeds. With the exemption of the upper limbs from bearing weight and their specialization in the exploratory/manipulative function. Exploration which, when directed at living matter, becomes interaction and therefore relation. Exploration, interaction and relation require ever greater complexity and specialization which, in order to be functionally integrated at the level of the central nervous system, require a fundamental bio-structural prerequisite: an increase in the size of the cephalic vesicle and therefore of the head of the unborn child.
  3. It follows: a relative "decrease" in gestation time so as to prevent the ratios between "increased" cephalic diameters and "reduced" pelvic diameters from conflicting, at the moment of birth, to such a point as to prevent the passage of the offspring through the birth canal.
  4. It follows: an "anticipated" birth of offspring that turns out to be the "most" helpless of all mammals, reaching independence in movement after about 12 months.
  5. It follows: a vital necessity to continue to be assisted and protected once outside the belly, a vital necessity for care, to remain as much as possible in contact with the sounds of the maternal body (voice included!), with the temperature of the maternal body, with the softness of the maternal body, and, as the sensory apparatuses develop, with the smell of the maternal body, as well as with the maternal gaze and expressions in all their expressive and therefore emotional modulations.

The first environment of life must therefore:

  • respond as much as possible to the fusional nostalgia for the "maternal flesh, lavish with care" (Irigaray, 1989);
  • be consistent with and congruous to the experience of "total care" undergone in the prenatal phase;
  • be cause, function and stimulus of the very gradual progress toward independence.

Care, then, as a function peculiar to the species; a fundamental attitude, necessary to the survival and development of the offspring.
Nourishment of the "primary hunger," maternal care roots in us the first essential "engrammatic tile"[3] necessary to survival: that of love.
Returning to the experience of my son's birth, everything unfolded in harmony and we were able to spend the night together in the most hospitable room. Except that the birth, premature by a month, and a faint veil of jaundice prompted, according to protocol, the placing of the "little premature one" in an incubator, to irradiate him with an ultraviolet lamp. It was May, and it would have been enough to expose the baby to the sun during the warm hours, through the open window, for the ultraviolet rays, naturally produced by the sun, to break down the bilirubin molecules on the skin surface. Despite my scientific knowledge as a young physician, it took me a couple of days before I resolved to voice a reasoned dissent regarding the technical considerations, otherwise unexceptionable from a procedural standpoint, expressed by the pediatrician; to sign the medical record and "release" the infant from the scientific rationale that, heedless of the harm that might occur, was holding his body in the incubator in order to carry out its (…our) protocols in total alienation from the most elementary principles of care.
Looking back today at these passages, I am surprised to observe that:

  • in the case of my father's death, in a "hospitalized" home, the medical role, the technical-scientific and procedural action, had offered themselves to me as an escape from the tensions caused by what, through the disease, was taking shape. If, as happens to many, my need to flee from the frightening, inevitable event had prevailed, that is, if my father had not had the lucidity to ask to die in his own bed, I would very probably have demanded and obtained that he be treated according to the best procedures in a specialist ward and finally in intensive care, hooked up to machines until the end.
  • in the case of my son's birth, in a "domesticated" hospital, the technical-scientific considerations of the head of pediatrics, offered in good conscience and to the best of his knowledge to prevent harm and disease, scotomized and concealed the actual priorities of the newborn person, which, evidently, were to be in close contact with the mother. If, as happens to many, I had simply entrusted myself to the "procession of procedures," the newborn would have remained in the incubator to avert a risk made tangible by the yellowish coloring of the skin, ending up exposed to another risk, less tangible but no less far-reaching for that, namely separation from the mother's body in the first period of life.

Just as an action of protection, when it becomes invasive, no longer answers to the principle of care, so an action that destroys does not necessarily have a negative valence if it qualifies as the deconstruction of symbolic worlds or of relational practices that reduce the space of self-realization of the other.[4]
Continuing to inquire into the sense and meanings of care, I like to include a few lines from the entry Cura of the Enciclopedia Einaudi:

Care, presented by liberal logic, formally respectful of the individual's freedom, as a right of the citizen, translates into an illusion that permits -through the deployment of (new) techniques- the expropriation of the sick person's body. If, indeed, disease has become a mediation to be fought against in order to avoid death, if, that is, the fear of death has been translated into the fear of disease, it is not the sick man who fights against his disease, even with the physician's help, but rather the Technician who appropriates it as an object of his own competence, excluding any participation of the man who, in this way, finds himself expropriated not only of the disease, but of the very body of which others take possession[5]

Notes

The great richness that, in my view, unconventional medicines bring as a dowry to medical science, through the proposal of Integrated Medicine, consists precisely in producing a point of view capable of repositioning the physician with respect to the "object of his competence" which, as things stand, would seem able to be only the disease.
To relocate its point of view in such a way that it includes the person as well as the disease. I repeat: as well as the disease, not In Place Of The Disease!
What stirred in me the professional interest and led me, by then mature, to take up again the study of medicine in its variants of Homotoxicology first and Homeopathy afterward, was the fact that, in the encounter with the patient, one had to aim first of all at bringing out the constitution, the bio-typical substratum of the latter. As if to say that, in the encounter with the sick person, the first question the physician is bound to ask himself is not: "what symptoms does he express, or what disease does he have?" so as to compose the diagnosis quickly and pass swiftly to therapy with the pressing question already in mind: "with which category of drugs, machinery, operative maneuvers, can I attack the disease?".
Rather it becomes essential to ask oneself, ahead of these nonetheless legitimate considerations: "Who is he? How does he stand in the world? What is his posture? How does he walk? To which experiences is he inclined? To which emotions? What Constitution underlies his way of being? What biotype? What character?". And next: "Which group of remedies, submitted to proving, has given evidence of prompting that constitution to move toward a state of greater well-being?" And finally, after cross-referencing these data with the analysis of the symptoms and inquiring into the way, at times entirely personal, of suffering from them: "How can I cultivate the causes of his health?", which is not only very different from waging battle against the disease but, cultivating the causes of health, is something that closely resembles what mammal mothers do instinctively and which, as we have seen, can be considered operatively foundational of the concept of care.
And so, finding ourselves dealing with operative functions, can we come to say that care can be enacted?
Certainly! Care is an enacted thing.
An enacted thing widespread throughout the animal world, specific to the class of mammals, particularly developed and essential for the human species. Primary care, suitably enacted by mothers or by adequate substitutes, inscribes itself in our organism as mnestic-sensory traces founding the absolute precondition of existence in life and, thereafter, of its declensions and representations in love, in pleasure, in well-being, in health.
The thermal, rhythmic, vibrational qualities, in a word sensorimotor, that give substance to primary care within the mother-newborn relationship are the only ones capable of triggering, where of course the biological preconditions are sufficient, our emotional/sensory instrument, the body, in-forming it according to the biological and zoological principles of Kingdom, Class and Species, but also according to the cultural and relational styles of ethnicity, tribe, family, dyad and, of course, of the individual. The process can take place in various ways, more or less qualitatively congruous or defective; what is demonstrated with certainty is that it stops completely through the reduction of the "times of exposure to maternal love" below a quantitatively critical limit which, at least in the 1950s of the twentieth century, was measured by Spitz on the order of 6 months of continuous absence in the course of the first year of life.
From this it is deduced that, if care is an enacted thing, the essential requisite of care is the presence of a being capable of enacting it.
What, then, can we mean by presence?
If the physical person of the caregiver (one who lavishes care.) is lacking, obviously there is no agent and there can be no care. If the caregiver, or supposed such, is there physically but with the flow of his thoughts is in memory or in anticipation, when not instantly transferred into an "other present" by the instruments of telecommunication, what he will be able to enact will be, at most, an activity of care, often standardized and routine but, if the agent is expert, also unexceptionable on the formal technical level. If instead the caregiver manages to be present to himself and therefore to the other, if he is capable of renouncing his own absence, if in a deontologically and ethically measured manner he manages to enact his own "half part" in the dual phenomenon of the relationship, then he has some probability of finding himself carrying out an action of care that is synergically therapeutic (if he is technically competent) and thaumaturgic (if he is relationally competent).
To perform an action of care is therefore not simple; here, as with other phenomena difficult to measure, what counts is not only the amount of time that, as a carer, one spends in the presence of the other, but also and above all the quality of the presence. The action of care as a qualitatively detectable act of presence, besides being technically competent, can account for a "homecoming" of medicine to its original function as the art of care. An art of a performative kind which, like all the performative arts, needs, besides a theoretical training and adequate practice, a system of constant and continuous training that procures, fosters and elicits the performer's need to find himself in a certain existential state of particular psychophysical readiness for the execution of the act of art: in this specific case the exquisitely relational act of care.
To conclude, I would like to propose a further semantic displacement that could serve as an introduction and a spur to a real change in the state of the art. Let us try to see what happens if we regard as a legacy of medical-scientific "bellicism" also the term centered which still resembles targeted and which evokes a pointer and a target. Let us try to imagine what can happen by replacing "medicine centered on the person", an expression to which, as experimenters of medicines complementary to traditional Western medicine, we are already sensitized and loyal, with the term "medicine based on the person" or, better still, "founded on persons".
It could be, if I may be permitted the comparison, like when the system of the veins and the arteries was discovered: it was already there but we had not yet considered it; once we took it into consideration an updating was produced that concerned the whole system of scientific knowledge on the functioning of animals.
Today, wishing to affirm this as a discovery and to update the object of application of medicine from the disease to the sick person or, better still, to the person, we would carry out a necessary and providential "paradigm shift" and we might find ourselves radically overturning the system of knowledge with a domino effect. The moment we come, even as technicians, to take the person into consideration, without reducing the field of attention to the mere object disease, we will have to acknowledge that we are opening a relationship with it. Little symmetrical on the plane of roles, powers and knowledge, but wholly mirror-like on the plane of subjectivity: there will no longer be a subject who performs technically and scientifically validatable operations on an object, but two subjects who relate to each other in order to produce health, or better, to cultivate health.
My impression is that, by finally accepting to enact a medicine of relationship and to cultivate the other by lavishing care, in the proper sense of the term, we might find ourselves opening up the medicine of the future, restoring to the carer's remit the refined and ancient art of thaumaturgy, to stand alongside the tried and efficient technique of therapy.

[1] Fernando Savater: La vita eterna, Laterza, Roma-Bari 2007. p.35

[2] In Martin Heidegger, Essere e Tempo, Milano, Longanesi, 1976, p. 247; translation of the Fabularum Liber by the Latin author Hyginus, 2nd century AD.

[3] An engram is a hypothetical neurobiological element that would allow memory to recall facts and sensations by storing them as biophysical or biochemical variations in the tissue of the brain. The term engram goes back to the German biologist Richard Semon (1904). The engram was, for the author, a permanent change in the nervous system, the mnestic trace that preserves the effects of experience over time. (http://it.wikipedia.org/wiki/Engramma)

[4] Luigina Mortari: La pratica dell’aver cura, Paravia Bruno Mondadori Editore, 2006, p.33

[5] Cura, Enciclopedia Einaudi, Torino, 1978, vol. 4, p. 306; entry written by Franca Ongaro Basaglia

Maurizio Venezi, ecologist, homotoxicologist physician, psychotherapist specialist in psychiatry. He lives and practices in Perugia, where he founded (2018) and coordinates, in the capacity of master, the "Bottega artigiana della Cura" (maurizio.venezi@gmail.com).