Sandro Spinsanti

Obtaining Consent from the Family: A Horizon for Clinical Ethics

in The Journal of Clinical Ethics

n. 3, fall 1992, pp. 188-192

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Theoretical Aspects

OBTAINING CONSENT FROM THE FAMILY:

A HORIZON FOR CLINICAL ETHICS

Translated and edited by Patricia Mazzarella

Introduction

In clinical ethics, bioethicists are faced with the often difficult task of procuring the physician’s “consent” to cooperate with those who do not belong to the medical corpus but who attend to what occurs in medical practice. I believe that it is an experience common to many of us who are “outsiders” ― philosophers, bioethicists, theologians, and jurists ― that the physician’s first reaction with regard to our intervention in the medical field is one of diffidence and skepticism.

As we are laypersons from the doctor’s perspective, we must overcome a subtle barrier, which often can be seen in a small backward movement of the head, a raised eyebrow accompanied by a questioning look, and a barely detectable twitch of the mouth followed by a slightly ironic smile that says: “What makes you think you know medicine?” It is an invisible barrier, but one that is nevertheless real.

Some time ago, I mentioned to a physician friend that I was planning to participate in a conference on the topic of gaining consent in clinical practice. Immediately, I saw that skeptical expression (which I now know well) appear on her face.

At the same time, her mouth was formulating the question: “Consent, what is that?” I tried to explain briefly what I meant. It was not so difficult to overcome the barrier — at least that time. With a smile that signified insight, she told me that the week before there had been a case in her hospital, in which it was necessary to obtain consent from the family for one of the patients. It had been difficult, but ― after a long discussion-she had succeeded. Then she related the following story.

Case Study

Mr. M, aged seventy, was hospitalized in our unit, a clinic specializing in lung diseases. A bronchoscopy showed a pulmonary tumor in an advanced stage, having already reached the two bronchi and the trachea. Severe dyspnea [difficult or labored respiration] was slightly and temporarily relieved by an immediate laser resection. Four days after Mr. M’s admission, he was getting worse and death was imminent. I called his family, which included his wife, two sons about forty years of age and their respective wives, and a daughter of about thirty.

The elder son spoke to me first and asked to know the details of his father’s condition. I said to him that, as he already knew, his father was affected by a progressive malignant tumor. The son reacted strongly to this statement, claiming that he didn’t know, and that no one had informed him. When I checked with the nurse, however, she told me that she had been present at the discussion during which the two sons had been informed. I tried to explain the situation to the son once again. I told him that his fatherwas affected by a tumor of the bronchi in an advanced stage, that there was no possibility of treatment that would benefit him, and that death would probably occur in a few hours. He seemed astonished. He repeated several times that this was not possible. Just the week before, he said, his father had been sitting in the garden. It might well be a malignant tumor, but such a rapid death was not possible.

He pleaded with me to do everything I could for his father. Medicine today has made such progress, he said, that it must be possible to do more. Couldn’t we use laser treatments again? Or transfer him to the intensive care unit and let him breathe by a respirator? He insisted that every known therapy be tried for his father. The other son agreed with his brother that aggressive treatment ought to be attempted. Even a talk with the chief physician failed to dissuade them. The medical team discussed whether there might still be some benefit from laser treatment and came to the conclusion that the burdens would outweigh the benefits. Even if the treatment were successful, it would extend the patient’s life for only a very brief period. He would suffer from extreme dyspnea and would still not be in a condition to be discharged from the hospital. We agreed that none of us would have consented to the treatment if this were the father of any of us.

Meanwhile, the global respiratory insufficiency increased, and Mr. M went into a coma. We discussed the situation once more at the patient’s bedside. As simply and clearly as possible, the doctors told the family the opinion of the medical team. The chief physician explained that the surgery required anesthesia, which meant a high level of risk for a moribund patient. For that reason, it was not recommended. He then turned to the nurse and asked for her opinion.

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She replied spontaneously that she would let the family decide.

The chief physician once again outlined the two scenarios. If the medical team administered no additional treatment, the patient would be drowsy, very likely without pain, close to death, and surrounded by his extended family (many other members of the family had begun to arrive). If the team pursued aggressive treatment, however, the patient would endure a procedure during which he might die on the bronchoscopy table. If he were to survive, it would be with a respiratory insufficiency, and his condition would continue to deteriorate. There was no possibility that he would be able to return home. The physicians believed that the best decision would be to do nothing. However, they would treat aggressively if the family insisted upon this course of action.

The family talked among themselves for about half an hour, after which they informed us that they did not want any further intervention. The wife and daughter told us clearly that they agreed with us; it was the sons who found it difficult to accept the choice not to do something. Mr. M died an hour later. The family thanked us and left the hospital in great sorrow, but without any anger.

The Gestalt Phenomenology

When my friend finished relating the case, I told her that, in my opinion, she and the other members of the medical team had used an excellent approach to obtain the family’s consent not to treat. The family had acted as an agent in a double sense: as the representative of the patient, who was not in a condition to decide for himself, and as an agent for family members themselves, who were experiencing emotional pain and the need to grieve. “There”, I said, “these are the sorts of things we will speak of at the bioethics meeting”. She responded with what seemed like a non sequitur. “Well”, she said, “what happened to me is just like what happened to Monsieur Jourdain”. I was expecting another clinical case, this time concerning Monsieur Jourdain. My friend smiled at my ignorance and reminded me that Monsieur Jourdain is a character in Moliere’s comedy Le Bourgeois Gentilhomme. In the play, Monsieur Jourdain becomes rich and employs a tutor to teach him the things a gentleman should know. The first lesson includes an explanation about the difference between poetry and prose. After hearing what differentiates poetry from prose, Monsieur Jourdain reacts with amused surprise: “So, for forty years I have been speaking prose and I did not know it”. And then my friend made her point. “All of these years”, she said, “while I have been carrying out my daily work as a doctor, I have been obtaining informed consent and did not know it”.

This coincidence between the practice of medicine and the practice of ethics deserves something more than a bon mot. I maintain that those who practice ethics as a profession do not always realize that they are not importing ethics into the health field as a foreign product. They are, instead, utilizing the conceptual elements of ethics to highlight what is already being done as an intrinsic dimension of the practice of medicine.

Support for this position can be found in the notion of Gestalt as applied to perception. We do not perceive single elements separately, but we arrange them in structured systems: Gestalten. We then distinguish the elements that compose the figure from those that form the background, with the possibility of inverting their role, so that what was first a background becomes the figure ¹. This notion gives rise to the “ambiguous figures” that were spread by the German current of Gestalt psychology. In these figures, the same item can be seen differently, depending on the relative role that is given to the figure or to the background. One well-known figure, for example, can be seen as a vase or as two facial profiles looking at each other; another can be seen as an old woman or a young one. No new element has been introduced; there is only a change in the interplay between the figure and the background.

It might be possible to describe the relation between the scientific aspect and the ethical aspect of medical practice from the perspective of Gestalt psychology. Good medicine carried out as a technical science and good medicine carried out as a humanistic and ethical endeavor are interrelated as figure and background. To conceptualize medical practice one way or the other does not require the introduction of new elements that are not already present in medicine. In order to practice medicine ethically, physicians do not have to change occupation or learn a conceptually different body of knowledge. Ethics is already an integral part of their profession. When bioethicists become aware of this state of affairs, they avoid behaving as missionaries who move about the medical field preaching to the ignorant. At least, they avoid the pedantic approach of Monsieur Jourdain’s tutor. As a result, they decrease the risk of prejudicial resistance from physicians and facilitate the insight that ethical behavior is part of the Gestalt of medical practice. I have called this the formation of “physician consent”. The ability to obtain this consent is not only necessary for successful acceptance by the medical community, but it is a standard of good practice for the bioethicist.

The Place of the Family in Bioethical Guidelines

We may now focus our attention on the role of the family in the decision-making process. From the case study we see that, in good medicine, the physician usually considers the family. Do we need to take this relational network of the

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patient into account when developing ethical guidelines for the physician? In order to answer this question, let us first take a look at the documents that have traditionally directed the conduct of European physicians on this matter.

On 6 January 1987, the “European Guide of Medical Ethics” was approved at the Conference of the European Economic Community Medical Order ². If we look through the document, we do not find any references to the patient’s family. The guidelines presume, theoretically, an absolutely individual conception of the physician-patient relationship. The primary notions that are to guide the decision-making process are patient benefit and physician autonomy. The concept of physician autonomy removes the physician from the realm of social regulation regarding medical practice. As a result, problems of cost have no relevance when looking at the matter of consent from this perspective only. On the other hand, the strong emphasis put on beneficence implies an anthropological concept that considers the person as an individual instead of in relational terms.

The type of physician-patient relationship that inspired the European Guide is described as a contract between two autonomous individuals who can agree only by compromise. In contrast to this approach is the relational model, in which a human being constitutes himself or herself, from birth to death, in a network of relations of which the family is the symbolic referent. The first model, as instantiated in the European Guide, is the most successful attempt to integrate the principle of autonomy as developed in the American bioethical milieu ³. The second has been a de facto practice in the Mediterranean cultural environment throughout history.

It may seem as if, in the Latin context, the family occupies a more important position than the individual in medical decision making. The professional code of Italian physicians contains explicit mention of the family in the chapter that guides the physician-patient relationship. This is brought to the forefront in the situation that, for a doctor in a Latin culture, constitutes the ethical dilemma par excellence: Should an unfavorable diagnosis or prognosis be communicated to a patient? On this question, the Italian Medical Association stated in 1978, in Article 30: “A serious or unfavorable prognosis may be kept hidden from the patient, but not from his or her family”. A more recent version of this professional code, approved in 1989, stated in Article 39:

The doctor may take the opportunity, after evaluation, to minimize or hide from the patient the seriousness of an unfavorable prognosis; but it must be communicated to the intimate others. In any case, the wishes of the patient, expressed freely, must represent a determining element for the doctor, and his or her own behavior shall be inspired by the same.

From the comparison of these two versions, formulated ten years apart, some interesting observations arise. First of all, the word “family” has been replaced by “intimate others”. Evidently, even in Italy the traditional image of the family—in which the existing relations substantially reflect the close support system as legally registered-has given way to include more fluid and irregular situations. The new formulation would, in fact, include anyone who has a significant relationship with the patient.

A second element, which is substantially more important, is the section that refers to the patient’s wishes as an indicative standard. This is a new element in Italian medical professional ethics that implies the overcoming of two traditional attitudes: medical paternalism {the belief that the doctor knows what is best for his patient) and “familism” (the attitude that places the preferences of an individual second to that of the related group). With this concession to the principle of autonomy in the Italian physician’s code of ethics, there still remains culturally a relational orientation that makes it necessary for the doctor to take into consideration not only the wishes of the patient as an individual, but also the wishes of the patient’s family or intimate others, if possible. We may imagine two different models of consent: one is centered on the individual person and is intended to protect that individual’s autonomy; the other is oriented toward the person in his or her relational dimension and is intended to promote greater caring.

Ethics of Care and Ethics of Justice

As often happens in ethical thought, our first effort must aim at avoiding any form of dualism that tends to place good and evil on opposite sides. We must also be careful not to surrender to the temptation to value one model more highly because it is more “modern”, while devaluing the other because it is a continuation of a tradition that is “destined” to give way to a more progressive conception.

Certainly today it has become a trend in bioethical thought to denounce the limits of an “ethics of justice”, which does not integrate the “ethics of care” as first presented by Carol Gilligan ⁴. This ethics of justice, the final aim of which is to instantiate the principle of autonomy, does not lead to the strengthening of interpersonal ties in family and community; it perpetuates fragile relations based on utilitarian reasons. The ethics of

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care, however, is based on the assumption that persons are dynamically interconnected and that each situation requires a joint evaluation of the interreactions. Therefore, fairness in the consent process is not enough; the consent must be a factor in preserving the relations. As with any moral judgment, the process of forming consent cannot be reached by a solely rational method; it must also include a relational method.

Whatever credit might be given to the ethics of care as a corrective of the unilateral aspect of the ethics of justice and the application of autonomy, I believe we must never try to discredit the principle of autonomy. Autonomy is an important value and it must be promoted, especially in those cultures in which medical ethics still tends to be dominated by paternalism. I believe that in my country, Italy, considering the patient to be an autonomous agent is still not part of “good medicine”. Rather, informed consent is “optional”. The promotion of autonomy is not limited to the countering of medical paternalism; it is also an effort to protect the patient from intrusions of the family. We cannot afford to lose sight of the individual’s best interest. There is a need to be sensitive to the chance that the consent that the physician obtains from the family might be the result of a collusion (knowing or unknowing), that will work to the patient’s disadvantage.

When speaking of collusion, we must not only think of situations in which the family agrees with the doctor about one or another therapeutic strategy that will affect the survival of the patient. We must also consider, when there is agreement, what the material interests might be ― such as a will or inheritance. Such cases involve legal questions, and not just questions of ethical principles. There are, however, situations in which the physician’s collusion with the family is much more subtle. A convincing example of such a situation is offered in a detailed anthropological study carried out by Deborah Gordon, an American anthropologist, on physicians’ communication of the diagnosis of breast cancer to women in Italy ⁵. Gordon found confirmation of what had already emerged from other research involving patients with tumors: the diagnosis was not generally communicated to the patient but to the family. Even when the diagnosis was relayed to the patient, the conversation could not be truly called a communication because it was full of euphemisms, reticence, and — at times — intentional lies. In these cases, Gordon found that invariably the family chose, in agreement with the physician, to withhold information from the patient in order to protect the patient from shock. Families always considered this to be for “the patient’s own good”.

The Beneficence Model of Caring from a Justice Perspective

Anthropological studies have made a contribution by analyzing the cultural mechanisms underlying choices to withhold information, choices that appear prima facie to be ethically motivated. In the Italian culture — where there is still a strong association of cancer with death, suffering, and lack of hope ― the noncommunication of the diagnosis is equivalent to a mechanism that is designed to keep the “condemned” patient “with us” in the social world while leaving death and suffering in the “other”, distant world. Informing a patient of the diagnosis is equivalent to social death. Gordon observes:

This non-disclosure augments the experience of a divided world for many patients. In many ways cancer is an illness of divisions, of disunity, of otherness. The illness itself is often lived as “other”, the person with cancer the same. Both medical and popular accounts present a battle between the “good” and the “bad”, the “benign” and the “malign”, reasserting the orderly dichotomous understanding of the world that cancer in fact defies ⁶.

If this interpretation can be confirmed — if, in other words, the noncommunication of the diagnosis can be seen as the elimination of the “other” (a symbol of death that threatens the social body) from the fabric of the community — then what is apparently a caring model, in which the doctor seeks the consent of the family in order to protect the patient from the anguish of death, shows all of its ambiguous nature. Such an alliance becomes a collusion that will cost the patient great anguish and even extreme isolation.

Such an “ethics of care” needs a good injection of autonomy as a corrective agent. And the physician, instead of seeking the consent of the family, should try to face the family’s disapproval in order to protect the patient’s right to manage his or her own life. Obtaining the consent of the family, instead of always being a guarantee of good medicine practiced with a high ethical profile, may become instead a form of prevarication.

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Conclusion

What should we conclude from these considerations? As nearly always occurs when, in clinical practice, ethics acquires the importance of the Gestalt figure while scientific problems become the background, we cannot speak in terms of a unified theory that is universally valid. We cannot simply state that the involvement of the family in obtaining consent is an optional extra, as bioethical models centered on autonomy would lead us to imagine. In fact, in most of the protocols that are inspired by these models, there is no place for family involvement. As noted, however, we also cannot state that the consent of the family is always the most beneficent choice. Perhaps it is closer to reality when we state that the two ideal models must be integrated. Edmund Pellegrino and David Thomasma have offered a basis for this integration in a principle they term “beneficence-in-trust”:

But healing, as we define it, is a form of assistance in making the patient whole again by working through his or her body. If the values of patient welfare and patient autonomy remain in conflict, then authentic healing cannot take place. A physician, therefore, must become both a moderate autonomist and a moderate welfarist. This can be enhanced in a beneficence model such as the one we suggest ⁷.

The integration of beneficence and autonomy is not an easy process. Scientific medicine believes that informed consent is superfluous, claiming that the physician, in his or her experience with sick patients, has learned more about the sphere of human relations than other interested persons. Bioethicists have had greater success in providing for informed consent, and the benefi- cence-in-trust model is a unique theoretical approach to the integration of beneficence and autonomy. Most models, however, are not built on a relational basis and do not offer even a theoretical framework that might take the family into account.

After having looked at some of the considerations involved in developing such a model, we can conclude that the inclusion of the family in the informed-consent process is both caring and just. It is caring in that it reminds us that, without consideration of the human being as a relational being and without making decisions concerning the patient in the context of a network of interpersonal relations, respect for the person is not honored. It is just in that it includes those who are part of the patient’s Gestalt, those who form the network in which the patient lives and finds an identity. Without such a consideration, the patient is not seen and treated in context. It is only possible to practice “good medicine” in the clinical sense when the patient is understood from this wider perspective. And without good clinical medicine, there can be no ethical practice of medicine.

NOTES

1. F.D. Perls, R.F. Hefferline, and P. Goodman, Gestalt Therapy: Excitement and Growth in Human Personality (New York: Julian Press, 1951).

2. Conference of the European Economic Community Medical Order, “European Guide of Medical Ethics”, 6 January 1987. The guide has been published in l'hôpital Belge 185 (1987): 285-87. The guide makes two types of recommendations, relating to (1) general duties and (2) specific rules governing biomedical innovation encountered in such activities as human research and genetic screening. In the history of medical ethics, the first category was developed from the Hippocratic Oath and subsequent tradition. The second category, however, has been only vaguely defined, without specific reference to the directives of the Council for International Organization of Medical Sciences (Geneva) or to the International Code of Medical Ethics formulated by the World Medical Association in London (1949) and Sidney (1966).

3. Recently, some American bioethicists have expressed concern about the prevalent principle of individual autonomy, which ignores family interests in medical treatment decisions. See John Hardwig, “What About the Family?” Hastings Center Report 20 (March-April 1990): 5-10.

4. See C. Gilligan, In a Different Voice: Psychological Theory and Women’s Development (Cambridge, MA: Harvard University Press, 1982). For the consequences of this approach as applied to society and health care in Italy, see S. Spinsanti, ed., Maschio, femmina: dall’uguaglianza alia reciprocità (Milan, Italy: Edizioni Paoline, 1990), 177-200.

5. D. Gordon, “Embodying Illness, Embodying Cancer”, Culture, Medicine, and Psychiatry, special issue: Traversing Boundaries Between Inside/Outside, Individual/Society, and European/North American Anthropology vol. 14 (June 1990): 275- 97. See also, E. Paci and A. Venturini, eds., Donna e salute. Dall'esperienza di malattia a una diversa cultura (Florence, Italy: Centro per lo studio e la prevenzione oncologica, 1989).

6. Ibid., 292.

7. E.D. Pellegrino and D.C. Thomasma, For the Patient’s Good: The Restoration of Beneficence in Health Care (New York: Oxford University Press, 1988), 35. For a valuable contribution to the integration of the models of autonomy and beneficence that arise from the “Mediterranean tradition” of sensitivity to family, see D.G. Guillen, “Una barriera tra stato e individuo”, Famiglia Oggi 37 (1989): 88-90.

I believe that in my country, Italy, considering the patient to be an autonomous agent is still not part of “good medicine”

We can conclude that the inclusion of the family in the informed-consent process is both caring and just