Ethical considerations of informed consent: A case study

Ethical considerations of informed consent: A case study

Soc. Sci. Med. Vol. 24, No. 6, pp. 483-486, 1987 027%9536/87 $3.00+ 0.00 Copyright g" 1987 Pergamon Journals Ltd Printed in Great Britain. All right...

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Soc. Sci. Med. Vol. 24, No. 6, pp. 483-486, 1987

027%9536/87 $3.00+ 0.00 Copyright g" 1987 Pergamon Journals Ltd

Printed in Great Britain. All rights reserved

ETHICAL CONSIDERATIONS OF I N F O R M E D CONSENT: A CASE STUDY NORBERT GOLDFIELDj and WILLIAM A. ROTHMAN2. ICIGNA Corporation, Hartford, CT 06152 and 2Gaylord Hospital, P.O. Box 400, Wallingford, C-q"06492, U.S.A. A~tract--Presentation is made of a case study concerning a patient with chronic obstructive pulmonary disease who was also discovered to have small cell carcinoma. The patient had indicated many years prior to his hospitalization that if he ever had cancer he would not want to receive chemotherapy. He also indicated to his physician he did not want to hear any 'bad news'. The dilemmas posed by the ethical relationship between consultant and primary care physician and between consultant and patient in such a case are explored. The role of a hospital ethics committee in advising the parties involved is also reviewed. Key words---ethics, physician-patient relationship, truth-telling patient's right not-to-know

As medical technology has progressed, more physicians and ancillary institutional staff are involved in decisions concerning quality of life and potential life-saving procedures. Questions concerning both legal and ethical approaches to a patient's right to know and not know are in the forefront of current discussion in literature. This paper reports on an ethical problem involving a conflict between a consultant physician and a primary care physician. In presenting this unusual case study, this paper will analyze present-day constraints to a patient's right to information about a diagnosis. CASE REPORT

A 60-year-old man with a long history of chronic obstructive pulmonary disease and recently diagnosed small cell cancer of the right lung, was admitted to a rehabilitation hospital for pulmonary rehabilitation. Several weeks prior to admission the patient was able to walk two miles. The patient was admitted to a local hospital in September, 1983 with marked shortness of breath on minimal activity. An admission chest X-ray revealed a small right upper lobe nodule. A needle biopsy revealed small cell carcinoma. The patient's family physician, who had known the patient for two and a half years, went into the patient's room and asked whether he would want to 'hear bad news.' According to the family physician, the patient said 'no.' The wife, in turn, agreed with the family practitioner's decision not to tell the patient his diagnosis or treatment options. No metatastic workup was done. Subsequently, after stabilizing the patient's lung function, the patient was transferred to a :rehabilitation hospital for pulmonary rehabii]tation. During his stay at the rehabilitation hospital, the patient's respiratory status improved considerably. Upon discharge to his family practititioner, his arte*To whom correspondence should be addressed. 483

rial blood gas on room air was pH 7.44, PCO2 of 29 mm hr, PO: of 75 mm HG. (An abnormal blood gas, but one which is compatible with a relatively well functioning life style.) Workup performed at the rehabilitation hospital revealed no evidence of metastasis of the patient's small cell cancer. On numerous occasions consulting physicians on the hospital staff expressed the opinion that the patient should be told of his diagnosis. A psychologist spoke with the patient's wife the day after admission. She reiterated her firm desire that her husband not know the diagnosis despite a staff physician's opinion that the cancer was treatable. She said that years ago he stated to her after watching a television program that he would not want to have chemotherapy if he ever had cancer. Both the patient and his wife felt (according to the wife) that the treatment always made you sick and the treatment was worse than the disease. After repeated efforts on the part of the treating team to convince the wife, the case was referred to the hospital Ethics Committee. The committee met several days after admission and recommended that the patient be informed of his diagnosis and that contact be made with the patient's family physician. As the hospital would not, in any case, be providing medical therapy for the patient, and as this patient had an established relationship with his private physician, it was felt that the primary care physician was the logical clinician to contact. When the consultant contacted the primary physician, the latter reaffirmed his decision and decried hospital staff 'intervention' in a decision that he and the wife had entered. The hospital Ethics Committee reconvened the following day and recommended that other staff such as the hospital chaplain and administrator (who had recently received chemotherapy) speak with the wife. Again, the Ethics Committee reaffirmed that the patient be told his diagnosis. Despite these efforts the wife maintained her position. The head of the pulmonary division at a regional medical school was consulted and also felt that the patient should be informed. He stated that he knew the primary care



physician and would speak with him. This effort, however, resulted in no disclosure to the patient. The patient was discharged back to the care of his primary physician three weeks after admission. The patient was not told of the diagnosis prior to discharge.

such a right is seriously damaging to a coherent theory of ethical agency; and f u r t h e r . . , that patients have an obligation to be informed." He points out that refusal of information is irrational and, therefore, to a rational patient refusal is not a right. John Stuart Mill in his essay 'On Liberty' indicated that "no one but the person himself carl judge of the sufficiency of the motive which may prompt him to DISCUSSION incur the risk." Just because the patient at a remote Prior to the patient's admittance to the rehabil- time and place expressed a subjective disdain of itation hospital, the patient's wife indicated that the chemotherapy and hearing 'bad' news does not mean patient 'would not' want to know his diagnosis, and he would do so in a real and objective situation. The the primary care physician state that the patient 'did patient is a competent adult and must make, and is not' want to know his diagnosis. The difference entitled to make, his own decision concerning his between 'would not' and 'did not' represents a body and his future. By taking a paternalistic (or significant issue. If, in fact, the patient specifically maternalistic) stance the primary care physician and stated that he 'would not' want to hear 'bad news' the wife are denying the patient the right to decide a then the consultant would be acting in a paternalistic literal 'life or death' question. role and would also be violating the patient's autonAnnas and Densberger have stated that "the preomy in insisting, contrary to the patient's wishes, that sumption of Anglo-American law is that every comthe patient know the diagnosis. [1]. petent adult is at liberty to consent to or refuse any Some may raise a question on whether 'pater- proposal medical treatment" [4, p. 565]. There was no nalism' is a violation of autonomy. Annas and doubt of our patient's competence. From a legal Densberger state that "the right to refuse medical standpoint "the informed consent doctrine requires treatment is universally recognized as a fundamental that a patient be given material information, inforprinciple of liberty. Nonetheless, the right is often mation that might influence a patient's decision, infringed upon by paternalistic physicians" [2]. They including information about this condition, the proindicate that paternalism, from a legal standpoint is posed treatment, including its risks and benefits, and "interference with an individual's liberty for his own its alternative" [4, p. 568]. Clearly, in this case the good," and also it has been defined as "interference patient's right to such information was jeopardized. with a person's freedom of action or freedom of A recent survey performed as part of the Presiinformation." Thus, legally paternalism is a violation dent's Commission for the Study of Ethical Problems of autonomy [2, p. 562]. in Medicine and Biomedical and Behavioral Research The wife's assertion that her husband stated to her [5] reports on how such information should be given in the uncertain past that he would not want to have to a patient. In response to the question, 'Have you chemotherapy if a cancer was discovered lends poten- ever asked a doctor not to tell you bad news? more tial credence to the primary care physician's and the than 95% of respondents answered 'no' [5]. Another wife's position. The problem with the latter situation related question is also pertinent [5]: 'Sometimes is that the husband's remark existed in the abstract: physicians feel that it is advisable to withhold inforit was made years before he actually had cancer and mation about diagnosis, prognosis or treatment risks was only an assumption. It is unknown what he and alternatives from patients. Under which of the would say if actually confronted with a diagnosis of following conditions do you feel that a doctor would carcinoma. If, however, he had asserted that he "did be justified in withholding information about condinot" want to have chemotherapy, the assertion is less tion and treatment from a patient or not?' abstract and very positive. Studies have shown that in deciding which procedure to undergo, discrepNot ancies exist between what a patient with a certain Justified justified diagnosis really wants and what the general public If the patient tells the doctor that thinks the patient wants [3]. he does not want to hear bad news. 68 27 The patient's right to not know is also of paraIf the information might signifimount importance to this discussion. Although the cantly harm the patient's health patient, in the past had indicated to his wife and and well-being. 68 27 family physician that he would not want to hear bad If the patient's family asks the docnews, we do not know what he means by 'bad news'. tor not to tell the patient. 48 42 If the information might make the In the present case we are assuming that 'bad news' patient unwilling to undergo treatmeans that the patient has a carcinoma. However, the ment the doctor thinks is necessary. 38 55 'good news' is that it might be curable if chemotherapy is started right away. By not informing the patient of the 'good' part the physician can be The survey also examined the question of who is accused of playing God because the patient will be the best judge of the amount of information that denied any hope of cure due to lack of information. should be disclosed to the patient. Only 37% of those This is a classical 'Catch-22' situation in that a cogent questioned in the age group of the patient in this case decision cannot be made because the patient doesn't study (51--64 years) answered, 'the patient' [5]. know that a decision has to be made. Applying the survey findings in the context of this Ost [4] has argued "that there is not, nor can there case, the rehabilitation physician essentially asked be, a right not to be informed: that the recognition of himself: 'Did the patient really not want to know the

Ethical considerations bad news? Was the patient asked in enough different ways to obtain a true response?' It is important to note that the rehabilitation physician explained his thoughts to the patient's wife and the primary care physician and stated that there was a chance for therapeutic success if the carcinoma was treated in an early stage and that in any event a needle biopsy did not necessarily represent the final work on the diagnosis [6]. If an open-lung biopsy revealed that the patient had an adenocarcinoma as opposed to a small cell carcinoma, the prognosis was even better. However, without some therapy the prognosis was lethal. Despite the explanation of all of these potentially positive aspects, the wife remained absolutely adament that her husband would not want to be informed. The consultant and the Ethics Committee still felt that the patient should be told the diagnosis and the committee suggested that the primary physician be contacted and told of this decision. It is important to keep in mind that the primary care doctor and the patient had a long-standing relationship and the physician would be entrusted with the care of the patient after discharge from the rehabilitation hospital. In the view of the primary care physician, he (the doctor) had asked the appropriate questions of the patient and the primary physician was satisfied and the patient did not wish to be informed. The primary physician did not change his opinion when told the patient's pulmonary status had dramatically improved to the point that he would not only be able to tolerate an open-lung biopsy and nodule removal but that his chronic obstructive pulmonary disease would probably not present significant problems for several years. Although the consultant still felt that the patient should be informed, much of the physician's indecision revolved around the ethical implication of the traditional consultant-primary care physician relationship. Though not conclusively demonstrated, it is taken for granted that a primary physician-patient relationship (particularly a long-standing one) is superior to the consultant-patient relationship [6]. Referrals from a private physician to a consultant (or specialist) are traditionally predicted on the assumption that the patient will be sent back to the referring physician when the course of treatment has been completed. More than just courtesy and tradition is involved. It is considered ethical to have the patient return to the private physician. Ideally, the consultant functions as an adjunct to the primary care physician. This relationship extends to the release of information from physician to patient. Siegler has stated that " G o o d news and bad news, hut particularly the latter should not be transmitted to the patient by a consultant whom the patient has met once and may never see again" [7]. But, Siegler also says that there are a variety of circumstances when the consultant might ethically disregard the preeminent position of the primary physician "if the basic goal of medicine is compromised" [7]. A further coniplication in this case was that even if the consultant told the patient his diagnosis, the patient could not receive any treatment for the disease at the rehabilitation hospital. The primary care physician would have to follow the case or refer the patient to another specialist. It is important to ask if


there are ethical reasons that the consultant could have relied upon that would have permitted the patient to have been informed without impinging upon the ethical relationship between the consultant and primary care physician. Certainly one argument would be that 'the basic goal of medicine' was compromised because the patient would not have a choice of selecting a regimen that might cure or alleviate his ailment. Another argument, according to Veatch [8], would be that "even in this extreme case where the patient has freely chosen to avoid knowledge of his condition and no one else will suffer directly from his refusal, there may still be a moral duty to know one's self and one's fate." (This raises the question of whether the wife would 'suffer directly' if the patient was told, contravening her wishes. Both the rehabilitation physician and the Ethics Committee agreed that she would suffer.) As a last ethical resort, Fletcher [9] states that if a patient persists in refusing to be informed, the physician could ethically withdraw from the case, which is what the rehabilitation physician actually did (he was scheduled to resign his position at the hospital and move to a neighboring state). It was the hope of the Ethics Committee that the director of the service who was left in charge of the case would speak with a colleague at a regional medical school who knew the primary care physician and get him to intercede. The latter did intervene but had no success. By this time the patient was ready for discharge and it was hoped that the patient's improved pulmonary status would convince his wife and his primary physician to agree to tell the patient his diagnosis and proceed with treatment. Some other legal questions must also be reviewed. Although there are few legal precedents for this type of case, incidents of this type probably will increase in the future. A brief review of legal consent cases showed no similar cases. A number of cases have been reported concerning situations in which full disclosure was not given to the patient based on whether such disclosure would be 'medically sound.' Generally, the courts have found that full disclosure was not necessary in these cases [10]. In one landmark case the court found, "The physician's privilege to withhold information for therapeutic reasons must be carefully circumscribed . . . . The privilege does not accept the paternalistic notion that the physician may remain silent simply because divulgency might prompt the patient to forego thereapy the physician feels the patient really needs" [10]. In the present case, however, the patient would not have received therapy at the rehabilitation hospital. The rehabilitation physician would actually be intervening in a situation where the primary care physcian had made the determination that the information should be withheld for the patient's benefit. With reference to the informed consent rule, the primary physician can argue that he made a good faith effort to inform the patient, and the wife agreed with such a nonaction. The same applies to the physician's duty to warn the patient. Arguing that the primary physician was negligent in his action would be too extreme. If, indeed, the rehabilitation consultant felt the primary physician negligent, he simply



could have told the patient the diagnosis at any point in his hospitalization. It appears to these writers, and to the hospital's Ethics Committee that not telling the patient his diagnosis was an unethical decision. This has been borne out by a number of others. Schoene-Seifert and Childress have stated it best, saying that in deciding how much a patient with cancer should know "the guiding principle.., is respect for persons, which means that competent patients have the right to know and decide... (F)amily wishes in general, do not set an acceptable external limit on what the competent patient may know and decide . . . . It is a form of insult and disrespect to abridge a competent patient's rights when the only reason is to protect what others regard as that patient's welfare" [11]. The treating staff, therefore, found itself on the horns of a dilemma. If the patient is not told of his condition it was not (in their opinion) ethically sound, and if the patient is told, then the ethics of the consultant-primary care physician, as well as the patient-primary care physician, relationship are violated. A final question is, of course, did the patient really not want to know his diagnosis? An interesting aspect of this case is the role played by the hospital's Ethics Committee. The committee is made up of representatives from the medical staff, nursing, administration, social service, psychology and chaplaincy departments. A community representative also is on the committee. The committee reviews cases referred to it and makes recommendations (not edicts) concerning the issues that are present. In this case both the rehabilitation consultant and the patient's psychologist requested the advice of the committee. Several meetings were held to clarify the issues for the treating team members. The committee was unanimous in recommending that the patient be told his diagnosis. It also agreed that efforts should be made to convince the patient's wife and the primary care physician prior to informing the patient. Several members (not all) felt that the consultant's decision not to tell the patient should have been overruled in light of a hospital patient's fights clause regarding patient truth telling. (This last issue is of great importance as the committee was set up only to advise and not to mandate policy. However, it raises the question of whether someone should overrule a physician if the patient's rights are indeed being violated.) Despite the advisory nature of the committee's opinions, it is true that the hospital still assumes the legal and moral responsiblity of the consultant. A potential conflict exists in cases where members of the therapeutic team other than the physician requests a meeting of the Ethics Committee. In cases of disagreement between mem.bers of the health team, the Ethics Committee represents an interdisciplinary and trusted format to attempt to resolve the issue.


There is increased acceptance among both the

general public and clinicians of patient's fight to know his diagnosis and make decisions based on that knowledge. Indeed, it has been stressed that the patient does not have the fight not to know. It was the feeling of the Ethics Committee in this case that the patient has every fight to be informed of his condition. Without an), information the patierit cannot make an informed judgement of his condition. Keeping silent is not ethically correct. The conflict that evolved in this case was, however, the relationship between the primary care physician and the rehabilitation physician. Should the ethical relationship between the latter be broken in favor of the former? In either case something regrettable and possibly unethical will result. There are no clear-cut methods of how to react when confronted with specific situations. Increased technology and increased interest in medical--ethical problems and diversification of the health care team members will lead to disagreements as to the ethical approach to specific patients and specific situations. This paper has reviewed one such case and attempted to show how resolution of the disagreement can still result in failure to inform. It has also attempted to depict the role of an Ethics Committee in such discussions. REFERENCES

I. Vandeveer D. The contractual agrument for witholding medical information. Phil. Publ. Affairs 9, 198-205, 1980. 2. Annas G. J. and Densberger J. E. Competence to refuse medical treatment: autonomy vs paternalism. Toledo Law Rev. 15, 561-596, Winter 1984. 3. McNeil B. J., Pauker S. G., Sox H. C. Jr and Twersky A. On the elicitation of preferences for alternative therapies. New Engl. J. Med. 306, 1259-1262, 1981. 4. Ost D. E. The 'right' not to know. J. Med. Phil. 9, 301-312, 1984. 5. Harris L. et aL Views of informed consent and decision making. Parallel surveys of physicians and public in making health care decisions. In President's Commission for the Study o f Ethical Problems in Medical and Biomedical and Behavioral Research, Vol. 2, Making Health Care Decisions, p. 138. U.S. Government Printing

Office, Washington, D.C., October 1982. 6. Rudd R. M., Gellert A. R., Bold D. A. et al. Bronchoscopic and pereutaneous aspiration in the diagnosis of bronchial carcinoma cell type. Thorax 37, 426-465, 1982. 7. Siegler M. Medical consultation in the context of the physician-patient relationship. In Responsibility in Health Care, Vol. 12. Philosophy and Medicine (Edited by Agich G. J., Engelhardt H. T. and Spiker S.F.), p. 147. Riedel, Boston, Mass., 1982. 8. Veatch R. Death, Dying and the Biological Revolution. Yale University Press, New Haven, Conn., 1976. 9. Fletcher J. Morals and Medicine, p. 30. Beacon Press, Boston, Mass., 1954. 10. Lasky P. C. (Ed.) Hospital Law Manual, Administrator's volume, Vol. 1, p. 85. Health Law Center, Gaithersburg, Md, 1983. 11. Schoene-Seifert, Bettina and Childress, James F. How much should the cancer patient know and decide? Ca--A Cancer J. Clin. 36, 85-94, March/April, 1986.