Ethics of Relationship : From Communication to Conversation

Ethics of Relationship From Communication to Conversation

M. A. ANNUNZIATA

Centro d i Riferimento Oncologico lst i fufo Nazionale Tumori Centroeuropeo

Via Pedemontana Occidentale, 12 33081 Aviano, Italy

INTRODUCTION

The first part of this chapter describes the present situation in Italy as to whether physicians should inform cancer patients of their diagnosis. Italy seems to have reached a middle ground between two opposite mod- els-the paternalistic view of the past and the American or Northern European approach. The second part of the chapter deals with an analy- sis of the communication process, with the aim of demonstrating the impossibility of controlling information, and therefore the necessity of finding new guidelines. The assumption is that no direct correlation exists between what the doctor tells and what the patient knows, and therefore the “to tell/not to tell” dilemma is true more in theory than in reality. In fact, the patient who has received no “official” communication often knows more than the patient who has been given detailed information.

Daily clinical practice is definitely too complex and dramatic to be reduced to such a simplistic quandary. A more appropriate question, then, may be ”does or doesn’t the patient know?” It is the patient‘s awareness, not (or at least not only) the information given that allows an individual space for personal choices, autonomy, and self-determination.

The awareness of disease is not only a dynamic process influenced by a number of factors, such as a patient’s personal characteristics, the clinical situation, and the adequacy of the information provided; it is also an inferucfive process through which doctor and patient communicate.

A more educated population, scientific progress, and the various dif- ficulties encountered in clinical practice are just some of the reasons behind the need, felt by many physicians, for a theoretical solution of the dilemma of what to tell the cancer patient. General guidelines may, in a sense, free doctors from the emotional burden of a more personal approach.

In the author’s opinion, the solution is multifaceted, requiring a better patient/physician relationship, a careful assessment of the needs and expectations within the relationship, and the physician’s specific prepa-

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ANNUNZIATA ETHICS OF RELATIONSHIP 401

ration for effective communication. The term “ethics of relationship” indicates respect for definite guide-

lines in the relationship, which are nevertheless subject to modifications and adjustments, depending on the constantly changing aspects of the relationship itself, its requirements and goals.

The internal guidelines are determined by the patient’s emotions, his needs, values, and hopes, which the doctor must comprehend, discuss, and respect. The resulting relationship is therefore based on the complete recognition of the patient as a person and the establishment of a balanced form of communication (conversation), which stems from the doctor’s equally complete recognition of his own personal history, feelings, and needs as separate and distinct from those of his patient.

In this relationship, the foremost right of the patient is to receive correct and adequate information about his disease-as is the current indica- tion in clinical practice-but according to rules and times determined within the relationship itself. What we have termed “ethics of relationship” simply indicates the doctor’s ability to be, to face his patients as a human being.

The Italian Situation

The question ”Should patients be told they have cancer?” has been addressed for a long time. Whether or not to withhold information regarding the diagnosis of cancer is the most studied aspect in the litera- ture,’-’O and this has led to a more constructive philosophy toward this disease. An interesting survey carried out in 1984 by J. Holland and col- leagues9 in order to determine the number of oncologists who tell the truth to their patient, showed a much lower percentage in Italy (40%) compared to Northern Europe and the United States (80%). There are a number of considerations, both professional and personal, that contribute to the doctor’s decision, and many of them depend on the effects of the rules of behavior shared by doctor and patient.

Cancer is often associated with suffering and death; other diseases may be equally fatal, but cancer is regarded generally-not only by the layman, but often by counselors and physicians as well-as a horrible, incurable, disfiguring disease. It is therefore not surprising that today many cancer centers in Italy have adopted a different approach, more common in the United States and in Northern Europe. In Italy, the current approach may be placed somewhere between the paternalistic view of the past and the modern trend, which considers patients as autonomous individuals. It is undoubtedly attractive to contemplate the idea of a patient/doctor team confronting the disease together, thanks to an open line of communication that allows each individual to tap his own physical and emotional resources in order to meet the challenge he is fac-

402 ANNALS NEW YORK ACADEMY OF SCIENCES

ing and to be aware of his alternatives and choices. Spinsanti” has described two different aspects of the behavioral spec-

trum: on the one hand, doctors feel an “a priori hostility,’’ preferring a leading, fatherly role toward their patients, whose behavior remains dependent and passive; the other approach is what Spinsanti describes as “acritical acceptance,” in which a doctor merely relays information in an impersonal, often brusque, manner, with little or no consideration for the patient’s emotional needs.

In Italy the patient/doctor relationship is undergoing a deep change. Often the doctor is no longer considered infallible, and his diagnoses unquestionable. Patients are more informed and less passive about their decisions and options. The balance of the relationship, however, is based on a number of specific aspects, such as social and cultural background, personal expectations and attitudes. It is unwise to overestimate the vul- nerability of the patients to distressing information, but it would be equally unwise to proceed in the opposite direction and simply conclude that each patient is now perfectly able to deal with the right to know and the decision-making process.

La Bianca’* has stated that in Italy and other Latin countries it is com- monplace for many patients, in particular cancer patients, to avoid all responsibility and to assume that the right to choose and decide remains solely with the doctor. Such an attitude often fails to distinguish blind trust from realistic faith, but it is still quite common in Catholic countries. Nevertheless, it would be wrong to believe that only geographical or reli- gious limitations determine a patient’s attitude.13

A recent non-Italian study14 showed that the majority of the patients polled (54%), when asked to choose among five different options, decided not to get involved in the decision making and to relinquish it to their physicians. Conversely, a larger percentage (64%) of the healthy control group chose to participate fully in all medical decisions. It would be interesting to find out what triggers a dependent type of trust in a sick individual, and whether this may be based on cultural characteristics. Santosu~sso~~ has reported on the institution of a National Committee on Bioethics and the recent laws on blood transfusions (1990 and 1991) and on the prevention of AIDS (1990), which have confirmed the need for informed consent, and the introduction in 1992 of the European Guidelines for Good Medical Practice for the experimentation and use of new drugs. The new attitude toward the medical profession is, therefore, emphasized by a growing interest in the legal aspects of delicate matters such as patients’ rights and therapeutic privilege.

In the Italian medical community, some claim that it is entirely possible to adopt the “open” approach currently used in the United States and elsewhere in Europe; however, it is important to remember that differences in cultures, attitudes, and behaviors may modify, sometimes radically, the results sought.16 If, for example, the concept of benefit is the


same in both Italy and the United States, the concept of autonomy may differ.12

Many doctors have reservations about a more “transparent” physician/patient relationship because of their ”a priori hostility”17 and ”semantic rigidity,”18 deriving from their own unconscious phobia of death, which they share with their patients, and a feeling of frustration in their professional role.

The crisis of the paternalistic approach and the subsequent question “to tell or not to tell?” are spurred not only by the increasing interest in the patient as a person, but also by recent medical advances, which have produced more aggressive and effective treatments extending survival, and a culture that seemingly denies the fear of death.

I believe that the real question here is not whether or not to inform the patient, but, rather, the search for the optimal approach. Evidently, those who support the view of denying the patient information about his own disease will continue to believe in the patient’s need to be protected from unnecessary misery, painful decisions, and emotional burdens; those who choose to discuss the disease openly with their patients will just as surely continue to sustain the importance of self-determination, compliance, coping, and mutual trust.

These two modalities, if considered alone, separated from each specific doctor/patient relationship, with its own unique implications, may indeed bring negative results. There is no general answer for every case. Too often we forget that providing information to a patient is as important as what happens before and after the dreaded to tell/not to tell dilemma. There is no approach ethically valid for everyone, above and beyond the personal characteristics and limitations of each patient and doctor, in their respective roles. What we call “ethics of relationship” should be the ideal approach that satisfies the patient’s needs within specific rules of behavior shared by doctor and patient.

INFORMATION AND TRUTH IN THE PATIENT- PHYSICIAN RELATIONSHIP

In the patient/physician relationship, information is mediated by communication; through it, the patient learns about his diagnosis, prognosis, and treatments, which refer to data (symptoms, test results) about his own disease. Information may be given orally or in written form, or it may be somehow perceived by the patient; finally, information may be gathered autonomously by the patient from several different sources. Therefore, it is important to make a distinction between information and the mere transmission or verbal communication of data:15 in other words, the patient may already know much about his disease before the communication of his diagnosis.


The to tell/not to tell dilemma arises from the ass~mption’~ that information can be controlled by the doctor alone. Thus, we have two dia- metrically opposite views:

Information

Doctor and patient are equal (two individuals with equal dignity

The patient is the master of his or her person and well-being

No one can decide for someone else (except in the case of mental

In the doctor/patient relationship there is no contradiction

and capacities)

(self-determination)

incompetence)

between trust and truthful information

Noninformation

Doctor and patient are not equal The relationship between them is characterized by help, either

The management of disease does not need active participation by

The rules of the medical profession control the doctor/patient rela-

requested or given

the patient

tionship

These two approaches seem to imply that communication causes an almost automatic transformation of the patient into an individual able to think and decide for himself. But communicating information is often one-sided, as it consists mainly of the doctor’s input, not the patient’s; and inadequate, since the ”informed” patient and his doctor do not ultimately have the same knowledge. This model of information is, therefore, based on rules of behavior inherent to the medical profession that are predetermined and restraining, not necessarily appropriate to every patient/physician relationship.

This type of “informative communication” does not promote the pos- sibility of the patient questioning or verifying the information received, nor does it recognize a relationship between equals. What makes a difference is a doctor’s willingness to reexamine himself (self-reference)20 and his ability to recognize his position within the relationship and to enrich it with a different type of communication-conversation, during which both doctor and patient contribute their own experiences, emotions, and specific knowledge.

Another aspect of the physician/ patient relationship is help. The


patient is ”not only physically, but also emotionally sick; he has many fears: fear of the disease, of recurrence and death, of losing his job, of depending on others.”21 As with any other major disease, cancer exacts an enormous price, both physical and psychological; upon knowledge of the diagnosis, a cancer patient must face head-on his own mortal fragility. He needs solutions; often he has precious little time to learn more about his disease, in order to come to a decision that is in his best interest. He does not need input alone: he needs reassurance, information about his symptoms, and trust. He needs his doctor‘s human touch and compassion. From a systemic evaluation of the communication p r o c e s ~ , ~ ~ - ~ ~ we will attempt to answer some common questions of interest to anyone working with cancer patients.

Is the Information Provided Understood Correctly?

It is important to remember that-whatever the doctor’s decision about what to tell the patient-the person he is facing may already have had contact with other physicians and patients, and he may already have gathered data from several different sources. All this knowledge not only plays a role in his own definition of the disease, in his hopes and expectations, but it may also hinder the comprehension of the information he is receiving. Consequently, the most important consideration for the doctor is not the decision of what information to disclose, but, rather, how to do it.

He may opt for partial information, to be completed later on in the relationship; overinformation, providing more input than requested and/or necessary; contrainformation, withholding facts and actually lying to the patient; or “right” information, providing correct data that is adequate for that particular patient.

The individual providing verbal information shares-or presumes to share-a common code with the receiver. If, however, the information is perceived but not verbally expressed, it does not require a code in order to be received. Verbal communication, to put it quite simply, means to tell something to someone;” it requires a sender, a receiver, and a common code. The terms ”information,” which we have used above, and “transmission of data”15 are not as specific as the term “informative communication,” which includes different types of information: ”direct” (what the speaker actually means); ”inverse” (what he may “involuntarily” say), and “indi- rect” (what is received by the listener, by adding direct, inverse and “perceived” information gathered from one or more sources). The receiver makes all these connections, depending on the information he already possesses or is able to infer, Mediated information is so complex that it frequently causes misunderstandings: what the doctor transmits, or means, is often not what the patient receives, or understands. Other lim-


itations may make matters worse: doctor and patient may not even share the same code; the nonverbal aspects of the communication process may be ambiguous; the message may be missent or too difficult to comprehend. Patients often feel that doctors hide behind the barrier of their tech- nical language in order to withhold information; this type of communication is unidirectional and leaves the patient confused and frustrated.

In conclusion, mediated information may be misdirected (purpose- fully or not) by the sender, by either the use of a highly specialized language or a number of other factors (professional and/or personal experiences, cultural background), even when sender and receiver share the same code. We have seen how the message may be poorly transmit- ted and/or received. It is therefore crucial for patient and doctor to have an equal relationship, in which information can be constantly and freely checked and verified, thanks to mutual trust and common rules of behavior.

What Do Doctors Inform Their Patients About?

Doctors inform their patients about the diagnosis, treatment, and prognosis of a disease-cancer-that in our culture is synonymous with death. There is obviously a deep personal involvement when a doctor speaks of a patient’s pain, of his life and death. To tell the truth to a patient is clearly an easier task in the initial stages of the disease, when treatment options and strategies are possible and the patient feels moti- vated to fight the disease rather than surrender to it. But when doctors are bearers of not-so-good news (recurrence, progression, lack of adequate therapeutic prospects), then communication becomes more complex, and scientific information is insufficient. The emotional well-being and personal gratification of both doctor and patient must be found in a more meaningful rapport. In addition, the concept of information varies, depending on a number of factors: the patient’s age and his personality traits, the type and stage of the disease, the doctor’s age, experience, and attitudes. Given all the variables and all the possible combinations, the solution can be found only within an ethical relationship.

What Does Noninformation Mean?

We know that it is virtually impossible for an adult who is newly diag- nosed as having cancer to know nothing about his disease. Any patient can gather sufficient information from symptoms, diagnostic procedures,


surgical interventions, and/or medical treatments to understand that he is indeed sick, and at least to suspect the nature of his disease. And yet, the debate goes on about disclosing or withholding information. Why? Probably because we still equate communication with words-either spo- ken or written-and therefore feel that we can somehow control them (by saying or not saying them). It is, therefore, difficult to define noninformation exactly or to find a link between information, in the commonly accepted sense of the term, and a patient’s autonomy and self-determination.

Is noninformation the failure to openly inform a patient that he has cancer, to tell him his disease is not cancer, or to tell him he is not sick at all? If so, how may treatments be justified?

Partial information may mean not telling the patient the exact name of the disease, while nevertheless acknowledging the seriousness of his situation and discussing his therapeutic options. We may attribute noninformation to the doctor’s deep understanding and respect for the unstated decision of his patient to be kept in the dark about his real situation. But giving the patient a false diagnosis or even reassuring him of his perfect health is certainly not noninformation, but contrainformation, which lacks the respect for the patient’s rights as a person and cannot be the basis for a good doctor/patient relationship. ”In order to preserve patients’ autonomy in their best interest, doctors must know them well and understand their deepest needs.”26

Is the Communication of Information Always Accurate and Definite?

Information on diagnosis and prognosis usually differ because the first is usually quite accurate, while the second is frequently indefinite and uncertain. But it is important to assure the patient that, as precise as the diagnosis may be, it is not a “sentence.”

TamburiniZ7 has written that “the communication of a diagnosis should not be information that is provided only once, but it must be repeatedly adjusted, questioned and verified . . . it is ultimately the con- tinuing updating on the course of the disease.”

Taking into consideration all the factors that play a role in this crucial moment of the patient’s life-his diagnosis and prognosis, treatment plans, emotional needs, family and social role-information on his disease is never definite; it does not begin and end at a specific time but con- tinues throughout the course of the disease, in a process that requires honesty, confidence, and compassion. However, the flow of information does not stop even when doctor and patient meet impersonally, with little or no verbal exchange.


Does Information Equal Truth?

As commonly accepted, the term "truth" indicates the objective reporting of facts, the realistic recounting of data, the veritable version of events. But in reality there may be many "truths" about the same fact, data, or event. Inevitably, what we see is filtered through our own experiences. The uniqueness of our point of view depends on a number of factors, such as cultural background, beliefs, and education, to name just a few. The concept of truth is, therefore, neither absolute nor individual. In dealing with cancer, it seems that the only possible reference to the word "truth is death. In our culture, death is rarely acknowledged and often denied; the task of disclosing the truth (death) is usually delegated to physicians.

In the field of oncology, scientific truth and psychological truth merge into a cultural truth, shared by doctor and patient. The answer to the question "Does information equal truth?" is consequently "No." In fact, the question is more complex than it appears.

SaundersZ8 has stated that "physicians must not modify or betray truth, but choose from it the aspects more useful or less traumatizing for the patient. They must instinctively make a distinction between 'truth' and 'all the truth."' The author here uses the term "truth as a synonym for objective datum when he says it must not be modified or betrayed, and for information, when he says that it must be adapted for each patient, admitting, therefore, the existence of two truths (the doctor's and the patient's) according to a hierarchic type of relationship totally controlled by the doctor.

We provide information of facts, and we tell the truth about facts. This difference is not trivial; by talking about the truth physicians are able to expand bare facts into a conversation more naturally and spontaneously. Information does not equal truth because it implies a certain behavior on the part of the doctor beyond the mere reporting of data, the patient's ver- ification of the received message, and a type of ethical relationship that is made possible only in a conversation. The truth-telling process is more than just the factual notification of 'the patient's disease; the doctor's task includes his ability to humanize sterile data and adapt them to a more personal context. He must take into consideration his patient's (and his own) needs and emotions, which cannot, however, interfere with his diagnostic and therapeutic decisions. Truth cannot be separated from the patient's need to be informed, his hopes and expectations; it may cause changes and adjustments; it is a precious commodity within the relationship, merging the individual values and truths of patient and doctor. "To tell the truth is much more than just to provide information; it is not exactly the opposite of lying, nor the sum of correct facts, but a situation of mutual interchange in the doctor/patient relationship. This correlation is established on the basis of mutual responsibilities"16 and roles.


CONCLUSIONS

What we have termed ”ethics of relationship” is not restricted to a predetermined model of medical behavior, but it strengthens the autonomy of the doctor/patient relationship through open discussion and conversation. It establishes, within the relationship, a set of rules mediated by ethics-the doctor’s (professional and personal convictions) and the patient’s (experience based on personal principles and values). It pro- vides emotional gratification of both doctor and patient, in the fulfillment of their respective roles.

REFERENCES

1. FITTS, W. T. & I. S. RAVDIN. 1953. What Philadelphia physicians tell patients

2. RENNICK, D., Ed. 1961. What should physicians tell cancer patients? N. Med.

3. OKEN, D. 1961. What to tell cancer patients: A study of medical attitudes.

4. FRIEDMAN, H. S. 1970. Physicians’ management of dying patients: An explo- ration. Psychiatr. Med. 1: 295-305.

5. NOVAK, D. H., R. PLUMER, R. L. SMITH et al. 1979. Changes in physicians’ attitudes toward telling the cancer patient. JAMA 241: 897-900.

6. HARDY, R. E., D. R. GREEN, H. W. JORDAN et al. 1980. Communication between cancer patients and physicians. South. Med. 73: 755-757.

7. GREENWALD, H. P. & M. C. NEVITT. 1982. Physicians’ attitudes toward communication with cancer patients. SOC. Sci. Med. 16: 591-594.

8. GOLBERG, R. J. 1984. Disclosure of information to adult cancer patients: Issue and update. J. Clin. Oncol. 8: 948-955.

9. HOLLAND, J. C., N. GEARY, A. MARCHINI & S. TROSS. 1987. An international survey of physicians’ attitudes and practice in regard to revealing the diagnosis of cancer. Cancer Invest. S(2): 151-154.

10. MOSCONI, P., B. E. MEYEROWITZ, M. C. LIBERATI & A. LIBERATI (on behalf of G.I.V.I.O.). 1991. Disclosure of breast cancer diagnosis: Patient and physician reports. Ann. Oncol. 2: 273-280.

with cancer. JAMA 153: 901-904.

Materia 2: 1120-1129.

JAMA 175 1120-1128.

11. SPINSANTI, S. 1993. Orizzonte Medico, anno XLVIII-n.3(4) Marzo 1993. 12. LABIANCA, R. 1993. Un’alleanza terapeutica per condividere le decisioni.

13. SANTOSUOSSO, A. 1993. Modelli ideali e situazioni reali. Quad. Cure Palliative

14. DEGNER, L. F. & J. A. SLOAN. 1992. Decision making during serious illness: What role do patients really want to play? J. Clin. Epidemiol. 45 941-950.

15. SANTOSUOSSO, A. & M. TAMBURINI. 1990. Dire la verith a1 paziente. Alcuni motivi psicologici e giuridici. Fed. Med. 43 503-507.

16. SURBONE, A. 1993. Dire la verith ai pazienti. JAMA (Ital. Edit.) 5(1): 33-35. 17. AMIR, R. 1987. Considerations guiding physicians when informing cancer

patients. SOC. Sci. Med. 9: 741-748. 18. ANNUNZIATA, M. A. 1993. Dalla comunicazione diagnostica alla conver-

sazione. In I1 disagio psichico in oncologia. L. Grassi, Ed.: 283-288. Spazio Libri Editori. Ferrara.

Quad. Cure Palliative 3: 225-227.

3: 233-235.


19. NESPOR, S., A. SANTOSUOSSO & R. SATOLLI. 1992. Vita morte e miracoli. Medicina, genetica, diritto: Conflitti e prospettive: 113-117. Feltrinelli Editore. Milan.

20. TELFENER, U. 1991. I1 rapport0 terapeuta-paziente, ovvero il sistema osser- vante. In Dall'individuo a1 sistema. M. Malagoli Togliatti & U. Telfener, Eds.: 21-30. Boringhieri. Turin.

21. SCANNI, A. & G. FARINA. 1993. I1 gruppo come modello di lavoro. Quad. Cure Palliative 3: 229-230.

22. WATZLAWICK, P. 1971. Pragrnatica della comunicazione umana. Astrolabio. - Rome.

23. WIENER, M., S. DEVOE, S. RUBINOW & J. GELLER. 1972. Non verbal behavior and non verbal communication. Psychol. Rev. 7 9 185-214.

chiatry. Norton. New York, NY.

lare: 47-54. Raffaello Cortina Editore. Turin.

JAMA (Ital. Edit.) 5(1): 36-37.

Psichiat. Med. 4: 18-19.

Clin. North. Am. 66 1169-1983.

24. RUESCH, J. & G. BATESON. 1968. Communication. The social matrix of psy-

25. VIARO, M. & P. LEONARDI. 1990. Conversazione e terapia. L'intervista circo-

26. PELLEGRINO, E. D. 1993. Dire la veritii a1 paziente P un artefatto culturale?

27. TAMBURINI, M. 1990. Tumore a1 seno: Meglio informare per meglio curare.

28. SAUNDERS, D. C. 1982. Principles of symptom control in terminal care. Med.

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Ethics of Relationship : From Communication to Conversation