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Serious Disease and the Family
A sick body, a person who suffers, a family distressed Medicine face to face with a complex reality

M. Vannotti[1], M. Gennart
  1. The basic limits to the biomedical model
  2. A systemic paradigm in medicine: the bio-psycho-social model
  3. A phenomenological approach to the bio-psycho-social mode
    1. "Pathic" experience of disease
    2. The responses of the family to illness
    3. Health care: an encounter between health care professionals and the patient
  4. The role of the health care system
  5. Conclus​ion

Summary

Our contribution throws a phenomenological light on the biopsychosocial model of serious disease. Whereas in the biomedical model, data concerning the patient's human environment are considered to be of lesser importance in the field of science, the bio-psycho-social model claims that personal, interpersonal and social aspects of the sufferer's life must be treated with the same rigor as biological aspects. The authors wish to show how significant the impact of serious disease is on the patient's relatives, a fact which is often underestimated by care providers. They highlight how the disease of a parent influences the development of children. The authors outline interventions for practitioners, in particular concerning information given to the patient and his family circle.

Keywords : serious disease, family, biopsychosocial model, phenomenology

The basic limits to the biomedical model

The biomedical model represents the application to medicine of the reductionist factor-analytic approach traditionally applied to the natural sciences. The underlying concept of this method - and its deceptive promises - is that it will be possible to solve all the mysteries of life and acquire clear-cut, infallible knowledge by dissecting this reality, bit by bit, in ever smaller elements. The adoption of the analytical method in medicine is accompanied by an initial decision, which can be succinctly illustrated in the following terms: to be ill (to suffer, feel unwell, be upset...) can be reduced to having a disease, an unhealthy entity within one's organism. The medical approach therefore follows along lines which lead from the sufferer who is seeking the physician's help to unhealthy processes and states that latter can be identified in the patient's body.

Thus, there is a basic problem inherent in the biomedical model which is largely responsible for the unease sometimes experienced by patients towards medicine, as well as the uneasiness of physicians themselves when confronted with situations where their traditional models of thought and action leave them somewhat at a loss. "The crippling flaw of the model is that it does not include the patient and his attributes as a person, a human being." (Engel, 1980, p.536)

A scientific paradigm defines both the field it deals with and the methodology to be applied to this field, so that it can be known and modified. The formulation of a scientific paradigm is always predicated on an initial decision concerning the real "object" of medicine: the organ or its dysfunction? The functioning of the body as a whole? The person as a psychophysical individual? The person as a member of a social group? The method requires a decision concerning the means of tackling the specific object and treating it.

A systemic paradigm in medicine: the bio-psycho-social model

The basic idea of the systemic paradigm applied to the sciences of the nature is, to put it simply, that nothing in the world of the living exists in isolation. Every living creature (cell, person...) is a complex system comprising "sub-systems" and is itself one component of larger units, which make up its environment.

In the biomedical model the data concerning the patient's human environment does not come within its scientific field, nor that of its critical enquiry. The bio-psycho-social model maintains that it is important to take into account the personal, interpersonal and social aspects of the patient's life with the same rigor and critical scrutiny as those applied to biological phenomena. In practice, this means that "the physician identifies and evaluates the stabilizing and destabilizing potential of events and relationships in the patient's social environment, not neglecting how the destabilizing effects of the patient's illness on others may feed back as a further destabilizing influence on the patient (Engel, 1980, p.543).

A phenomenological approach to the bio-psycho-social model

Phenomenology is one of the most important branches of twentieth century philosophy. It was the starting point of a new paradigm in psychology and psychiatry (L. Binswanger, E. Straus), as well as biology and medicine (V. von Weizsäcker, F.J.J. Buytendijk). It is the adoption of the same methodology rather than a unity of doctrine that the adherents to phenomenology have in common.

In a phenomenological perspective, the starting point is the idea that disease can be defined as the specific process by which the subject suffers from a lesion on his body. As noted by Engel, modifications may occur in cells, tissues, organs, organic systems or even the nervous system, but illness and patienthood become real phenomenological factors only when the personal aspect is involved, that is, when the subject experiences discomfort or distress, or shows signs of what can be interpreted as indications of illness (Engel, 1980, p.539).

Illness, thus defined, is never a purely biological phenomenon. It attacks an organism that, before it can be objectively described as a physical body, is a person's body, a body that is lived in. By disturbing the way in which the person lives in his body, by modifying in this way his relationship with himself, his relations with others and with the outside world are disturbed. This is undoubtedly the most significant and ineluctable aspect of the human condition in medicine: his body is the starting point of man's actions, feelings and expression - not merely the means of carrying them out - so that any occurrence which affects his body immediately influences all his basic potential activities in life.

In a phenomenological perspective, illness is an event which attacks a living body inhabited by a subject, but also a living socialbody; an organism influenced by exchange with others, and more specifically by communication. From an anthropological point of view, exchange is the cement that seals social links and, at the same time, insures the individual's survival and the recognition of his own identity and his place in society in general, in its cohesion and permanence. These exchanges represent a fundamental contribution to supplying its needs in organization, maintenance and development, for the individual and for the group. The principle whereby disease affects always a social being has a double significance. It implies that:

  • disease, by disrupting biological functions, disturbs man in his partnership with his environment;
  • inversely, as biological functions are an integral part of the structure that links him to his environment, patient-human environment relations affect the evolution of the disease.

In the course of the complex process of events that determine the patient's clinical evolution, three aspects strike us as being particularly significant: they influence the seriousness of the disease in that, interacting with the biological factor, they co-determine the future for the sufferer. They are:

  • the "pathic" experience of the disease,
  • the response of the family to the disease,
  • health care, seen as an intersubjective encounter between health careers and the patient.

"Pathic" experience of disease

The concept of "pathic" experience may be summed up as everything that the patient suffers as a result of his disease. Now, this suffering may be extensive and complex; it is far more than mere proprioception.

Initially, disease appears as an assault on the person, originating in his body. When we are in good health and we "feel well", we can forget our body; we count on it to enable us to live independently of it, to devote our interests to the objects and beings in the world around us. In good health our bodies work for us "in silence and discreetly" (cf. Buytendijk, 1951). The first signs of illness are seen when something in our bodies, abandoning their latent state, and persistently imposing itself on us, disturbs us or causes pain. In doing so, disease creates a remarkable separation, even a dissociation between "ourselves" and the painful part of our bodies. So the first pathic experience can be described as a revolt against a part of the sufferer's body, in which he is both a prisoner unable to escape, an "alienated" being, for everything proceeds as if that part of our bodies were no longer ourselves.

But the pathic experience does not take place only in the presence to ourselves. To be ill modifies our "world" - in the phenomenological sense of including what, for each subject, represents "others". The painful nature of the disease comes not only from the fact that we are troubled by something within our bodies, but also that something which affects us bodily affects other possible activities, limiting our horizons in life, our "world". When we are in great pain or feel very ill, we are incapable of doing anything - other than suffer the pain of whatever is wrong with us. Such an experience is, moreover, complicated by fear. For this disorder in our bodies, though in us, escapes our control and threatens to lead to destruction and imminent death (Lévinas, 1947).

Our illness handicaps us by reducing our world and impoverishing it by retracting the limits to the capacity of our bodies - even to the point of death, which alone confines the person to his physical state, without any hope of escaping it.

But insisting on the way disease transforms the presence of one's body by causing a separation between one's self and an alienated part of oneself is equivalent to saying that disease cannot fail to affect the patient's relational life. The pathic experience of disease presents a third dimension, his relationship with others. In its most painful and critical forms, illness considerably reduces the patient's ability to be open-minded and his ease of contact with others. It may then become a burning subject, the center of attention, gestures and exchanges between the patient and the members of his family circle. In general, illness disrupts the patient's relations with the family, his ability to assume his usual functions within his professional and family milieu; it results in a modification of roles, a change in the sharing of responsibility etc. The sudden onset of illness, in this sense, is an event which is seen as a crisis, not only for the person who is subjected to it, but also his family and close friends (Vannotti, Célis-Gennart, 1998, 1999).

The responses of the family to illness

As the family is where the subject feels he most belongs, it occupies a privileged place in his affections and is therefore important as a base, decisive in determining the degree to which he feels security or insecurity. It therefore occupies, in this context, a particularly important place. Illness, in fact, especially when it is serious and life threatening, even if it is considered as a far-off threat, makes the family suffer and causes a crisis in family links of affection. If the serious disease threatens patient's own life, it constitutes for the family a threat of separation and loss (Rolland, 1990).

If the illness results in a distressing breakdown in the customary relations between the subject and his environment, in most cases it also produces a "protective regrouping" of the family, encouraging them to share in supportive and reparative behavior.

But the way in which the family system faces up to the illness of one of its members is by no means unbiased with regard to the patient's clinical evolution. In particular, in serious cases - which are characterized by the necessity, on the part of both patient and family, to reorganize their relationships and roles, with no possible hope of a return to a situation without illness - the way in which the family accepts this undesirable "visitor" affects the patient's vulnerability and personal resources. There is, therefore, a close interconnection between the patient's individual capacity to cope, and the means of coping provided by his family system.

We must insist here on the necessity for the systematic integration in the ongoing treatment of patients suffering from a serious disease, of sustained attention to the family circle - the essential horizon determining the patient's resources, and the scene of a large part of his suffering.

In our experience, minors whose parent is suffering from a serious disease are still too badly affected by it. Parents have a duty to care for, protect and educate their children in such a way as to ensure their growth. The child himself realizes his own need for protection, he knows that without the presence of a protector, he cannot grow and develop. But if his sick parent does not fulfill his parental function adequately, by reason of his serious disease, the child may himself take over his parent's protective role - termed "repair" behavior. Many children seem to be called upon to fill in for their parents in this way. As these children are particularly sensitive to their parents' suffering and frailty, they feel obliged to take care of their parents and are fully aware that, in the situation, they can ask for nothing for themselves (Vannotti, 1998).

There has been very little empirical research to evaluate the potential impact on children of a parent's serious illness. A recent review of the existing literature (Kahle & Jones, 1999) suggests that the few studies so far carried out do not provide statistical evidence that chronic illness interferes with parental functions, or has a harmful effect on children. Nevertheless, our clinical experience among families shows clearly that serious illness represents a considerable stress factor for children of seriously sick parents, and that a minimum of protective medical measures is essential (Vannotti, 1998).

Furthermore, the encouragement of research into the contribution of the systemic model in the field of general health care - with an evaluation of the effectiveness of integrated medical treatment of disease on bio-psycho-social principles (see a review, cf. Pinsof et al. 1996; Schiepek, 1999) - would assist in proposing the most suitable treatments, and would help to improve, in the long term, the health care system by economically and socially acceptable means.

A study carried out recently at the Policlinique Médicale Universitaire, Lausanne (Célis-Gennart, Vannotti, 2000) has revealed how often the patient's most important data concerning long-term medical treatment - diagnosis and prognosis - proved to be very difficult to "accept", on the part of the patients. Even when the physicians assured they had given all the relevant information, patients clamed they were not fully informed, particularly on the subject of the risk of dying; besides, many refused the physician's offer to answer any questions about points that worried them. A fortiori, family members do lack medical indications that would help them to establish the most favorable attitude towards the patient, and to accept the idea of a possible loss. Moreover, imagining that a loved one is going to die, while living in uncertainty as to when this tragedy will occur, is an enormous challenge to the families concerned during the whole period that a fatal, chronic illness lasts.

The refusal to accept affective states that are hard to bear, and fear of premature death, is one of the recurrent characteristics observed in the families studied. These factors are ignored in order not to increase the supposed suffering of others. Thus, parents often refuse to speak openly about the illness of one of the family, clearly wishing to protect them as if speaking of the illness made it more present, more of a reality. But this silence also results from the fear of facing up to his own decline in health and the possibility of dying, as well as that of being abandoned.

Health care: an encounter between health care professionals and the patient

The third dimension modulating long-term evolution in patients with a serious disease is the health-care function itself. Any medical act, whatever the level of the intervention, forms part of an intersubjective relationship, health-care being based on the encounter and the shared experience involving the patient and the health-care system (Onnis, 1998). Once this meeting has been initiated between the two participants, the disease itself is subject to a new condition - the therapeutic network - at a higher level in which health-care professionals and patients are caught up together in a process of co-evolution. Thus, the care-giver is not only involved in the evaluation of medical situations, but also in their evolution; and he or she is involved not only by reason of what he or she does or thinks, but also because of what he or she does not do or does not think.

The importance of communication with the patients - that most elementary of medical procedures - has been highlighted over the past 20 years, but medical education may not have sufficiently addressed the complexity of this task when it is applied to severely ill patients.

And in particular the many excellent training programmes available today emphasize cognitive-behavioural strategies, while the phenomenological dimension, the importance of which we have highlighted, is to a large extent sidelined.

The role of the health care system

How can a phenomenological approach help the physician when undertaking the care of serious cases? To be able to benefit from a pathic approach to illness and to attempt to use it curatively, the physician must legitimate suffering. To monitor the family repercussions of a serious disease, and to avert, as far as possible, the destructive effects on family relationships, the physician must give the family full information. To this end, he is encouraged to consider the structure of the family and its specific needs, and to take serious account of the suffering of each of its members. This seems to us to be of even greater importance in view of the repercussions on the development of each one, especially the younger members of the family.

The physician should realize that explaining the diagnostic and prognostic to the patient in no way ensures that the information will be passed on to the family. The results of our study suggest that the physician should always encourage important members of the family to sit in at discussions (even young children can only benefit from being included and recognized as having a right to such a participation).

In the context of chronic disease, the role of the physician is to ensure that the members of the family are present at least for the initial diagnostic. Then is the following information to be communicated, with great attention that it is fully understood:

  • the diagnosis of the disease,
  • how it may evolve,
  • its disabling aspects and the treatment they necessitate (does what the patient can no longer do translate into extra duties for the others?),
  • the prognosis and its repercussions in terms of life expectancy.

The meeting with the family at the initial diagnosis and at critical points of transition in the patient's medical history should be made an integral part of the physician's duties in every serious situation. Such meetings constitute for the family an event which comes within the framework of treatment, and have a preventive function: by helping the family early on to establish functional patterns, the physician facilitates later adaptation to the illness for each member.

A better understanding of the family set-up in serious cases (in particular, the tendency to "repair" and the phenomenon of anticipatory loss) should help the physician to increase the resources at his disposal, by using the resources of the patient's family, at the same time taking into consideration the suffering and destabilization that may result for them.

It should be noted that the medical code of ethics excludes the possibility of giving the family information without the patient's consent - which some patients refuse! Therefore the family cannot be informed without the patient's knowledge, without it having been clearly explained to the patient himself. This rule may seem self-evident but, in practice, many families try to obtain information without the patient knowing - which often leads to misunderstandings or even disagreements. For the health care system, this problem is illustrated by a frequent lack of experience in the ability to coordinate differing opinions within the family. Competence in this field often enables the physician to deal constructively with requests for information behind the patient's back. With suitable mediation, the physician can effectively channel the family's anxiety concerning the patient in such a way as to create an opportunity to provide shared information in the presence of the various people involved.

It is clearly impossible to solve all the complex problems the family faces at the onset of a serious illness in merely one or two consultations. The following proposals attempt to provide an outline for the various steps to help health carers in their ongoing treatment of serious long-terms patients:

  • Evaluate the emotional suffering experienced by each member of the family:
    • investigate the pathic aspects of the illness,
    • discuss the threat of death with the patient,
    • elaborate the distress for the family caused by an "anticipatory loss".
    By confronting suffering explicitly, each one can effectively become, at the same time, a giver and receiver of consolation.
  • Identify each member's contribution to the demands made on them because of the illness, and the extra work, often not realized as "repair", at the same time encouraging an expression of gratitude for the merits of each one.
  • Encourage the development of the patient's children so that they are not "sacrificed" in the support and "repair" of the patient.
  • During periods of transition - either in the lives of the patient or the family - help all concerned to recognize the possibility of having to adapt to an anticipatory loss, and to readapt to new demands when they become necessary.

Conclusion

The proposed methodology aims at promoting an integrating medical approach. While fully recognizing the importance of strictly biomedical methods, it refuses to reduce human suffering to a mere molecular deterioration or anatomic dysfunction.

In a phenomenological perspective, understanding a patient demands consideration of and respect for the overall configuration in which the illness takes place and where the various aspects already discussed, i.e. "pathic" experience of illness, family responses to it and their encounters with the health care system, interact and have a reciprocating influence.

Therefore, we maintain that the task of the physician should take into account the numerous repercussions that chronic illness exerts over the patient's social and family environment, and, inversely, of the destabilizing effects that a family organization disrupted by illness may have on the patient. Thus, it is important for physicians to work out the best means of coordinating the care they offer with the measures of solidarity necessary for the support and development of the life of the family.

The aspects of treatment we propose for physicians should encourage information and communication between the different members of a family circle. In doing so, they aim, above all, to help each member of the family to continue to develop in spite of the debilitating influence that illness exerts on personal relationships. By helping the family members to face up to the threat of death and to cope with the disease, the physician also helps the patient himself.

By proposing that we pay special unbiased attention to the experiences of patients and families, the phenomenological method can revive our ability to listen to others, so that we hear what the person who is suffering, in his body and in his relationships, has to teach us about the truth of our common human condition.

Bibliography

  • Buytendijk, F.J.J. (1948) : De la douleur. Trad. franç. Paris : PUF, 1951.
  • Célis-Gennart, M. & Vannotti, M. (2000) : L'expérience intersubjective de la maladie chronique. Ces maladies qui tiennent une famille en haleine. Lausanne : Institut universitaire de médecine sociale et préventive (Raisons de santé, 52).
  • Engel, G.L. (1980) : The clinical application of the biopsychosocial model. Am. J. Psychiatry ; 137 (5) : 535-544.
  • Kahle A., JONES G.N. (1999) : Adaptation to parental chronic illness. In : A.J. Goreczny A.J. & M. Hersen (Eds) : Handbook of Pediatric and Adolescent Health Psychology. Boston : Allyn & Bacon ; 387-399.
  • Levinas, E. (1947) : Le temps et l'autre. In : Le choix, le monde, l'existence. Grenoble-Paris : B. Arthaud, pp. 125-196.
  • Pinsof W. M., Wynne L. C., Hambright A.B. (1996) : The outcomes of couple and family therapy : Findings, conclusions and recommendations. Psychotherapy. 33 (2) : 321-331.
  • Rolland J.S. (1990) : Anticipatory loss : a family systems developmental framework. Family Process. 29 : 229-244.
  • Shiepek G. (1999) : Die Grundlagen der Systemischen Therapie. Theorie - Praxis - Forschung. Göttingen : Vandenhoeck & Ruprecht.
  • Vannotti, M. & Célis-Gennart, M. (1998) : Liens et chiasmes entre les dimensions personnelles, familiales et sociales de la maladie. In : M. Vannotti, M. Célis-Gennart (Eds.) : Malades et familles. Penser la souffrance dans une perspective de la complexité. Genève : Ed. Médecine et Hygiène, pp. 1-20.
  • Vannotti, M. (1998) : Maladie et compétence parentale. In : M. Vannotti & M. Célis-Gennart (Eds.) : Malades et familles. Penser la souffrance dans une perspective de la complexité. Genève : Ed. Médecine et Hygiène, pp. 235-251.
  • Vannotti, M. & Célis-Gennart, M. (1999) : L'expérience plurielle de la maladie chronique. Maladie pulmonaire et famille. In :Corps et thérapie familiale. Bruxelles : De Boeck Université, Cahiers critiques de thérapie familiale et de pratiques de réseaux, pp. 113-137.

[1] Policlinique médicale universitaire ; Service de Psychiatrie de Liaison, Lausanne, Suisse.