Disclosing the Truth to Terminal Cancer Patients: a Discussion of Ethical and Cultural Issues G.A

EMHJ • Vol. 16 No. 4 • 2010 Eastern Mediterranean Health Journal La Revue de Santé de la Méditerranée orientale

Review Disclosing the truth to terminal cancer patients: a discussion of ethical and cultural issues G.A. Kazdaglis,1 C. Arnaoutoglou,2 D. Karypidis,3 G. Memekidou,4 G. Spanos 5 and O. Papadopoulos 6

اإلفصاح ملرىض الرسطان يف مرحلته النهائية عن احلقيقة: مناقشة للقضايا األخالقية والثقافية جورجيوس ألكساندروس أكازداغليس، كريستوس أرناؤوطو غلو، ديميرتيوس كاريبيديس، غليكرييا ميميكيدو، جورجيوس سبانوس، أوثون بابادوبولوس اخلالصـة:إنإحدى أكثر املعضالت األخالقية التي تواجه العاملني يف الرعاية الصحية يف طب األورام صعوبة هي فيام إذا كان عليهم إخبار مرىض الرسطان يف مرحلته النهائية عن التشخيص وعن املآل، ومتى يقومون بذلك، وكيف، وإىل أي مدى. وهيدف هذا املقال الستعراض االجتاهات يف هذااملجال يف مجيع بقاع العامل. فرغم أن معظم األطباء يف هذه األيام يف كل من البلدان املتطورة والبلدان النامية يفصحون ملرضاهم عن احلقائق أكثر مماكان األمر عليه يف املايض، فإن من غري املؤكد االفرتاض أن اإلفصاح عن احلقيقة مفيد ًدائام للمرىض. ويتم التعاطي مع قضية اإلفصاح عن احلقيقة عىلنحو خمتلف باختالف البلدان والثقافات، ومتس احلاجة لرفع مستوى الوعي حول التفاوت الثقايف يف اإلفصاح عن احلقيقة بني املرىض املنحدرين من أقليات إثنية.

ABSTRACT One of the most difficult ethical dilemmas facing health care professionals working in oncology is whether, when, how and how much to tell terminal cancer patients about their diagnosis and prognosis. The aim of this article is to review the trends in this issue worldwide. While a majority of physicians in both developed and developing countries tell the truth more often today than in the past, the assumption that truth-telling is always beneficial to patients can be questioned. The issue of truth-telling is still approached differently in different countries and cultures and there is a need for an increased awareness of cultural differences to truth-telling among patients from ethnic minorities.

Divulgation de la vérité aux patients atteints d’un cancer en phase terminale : discussion sur les problèmes éthiques et culturels

RÉSUMÉ Un des dilemmes éthiques les plus difficiles auxquels sont confrontés les professionnels de la santé qui travaillent dans le domaine de la cancérologie est de définir s’il faut annoncer le diagnostic et le pronostic aux patients atteints d’un cancer en phase terminale, et à quel moment, de quelle manière et dans quelle mesure leur en parler. L’objectif de cet article est d’étudier la tendance dans ce domaine au niveau international. Même si la majorité des médecins, aussi bien dans les pays développés que dans les pays en développement, disent plus souvent la vérité aujourd’hui que par le passé, l’idée selon laquelle dire la vérité est toujours bénéfique pour le patient donne matière à réflexion. Le fait de dire la vérité ou non est abordé de manière différente en fonction des pays et des cultures, et une plus grande conscience des différences culturelles est nécessaire avant de dire la vérité aux patients issus de minorités ethniques.

1Department of General Surgery, Saint Savvas Oncology Hospital, Athens, Greece (Correspondence to G.A. Kazdaglis: [email protected]). 2Division of Gynaecologic Oncology, Department of Obstetrics and Gynaecology, Darlington Memorial Hospital, Darlington, United Kingdom. 3Eastern Virginia Medical School, Norfolk, Virginia, United States of America. 4Department of Oncology, Athens Naval and Veteran Hospital, Athens, Greece. 5Eurodiagnosis Diagnostic Centre, Thessaloniki, Greece. 6Department of Plastic Surgery, A. Sygros Hospital of Dermatologic Diseases, University of Athens, Athens, Greece. Received: 21/02/08; accepted: 03/04/08

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Introduction More attention ought to be drawn telling. They have generally regarded to the evidence whether truth-telling truth as preferable, if not indispensable, Cancer is a complicated illness, which has indeed a positive impact on patients’ to human relationships, and deception for many years and in many cultures was quality of life or is just assumed by health as something that, at the very least, perceived as incurable. Cancer meant care professionals to be beneficial to needs justification [5]. death, and there was a tendency to hide patients. Furthermore, an increased Truth-telling is a complicated busi- the diagnosis from the patient, who was awareness of cultural differences regard- ness. From a health care perspective, it subconsciously excluded from life [1]. ing truth-telling is needed to achieve may be defined as total openness about This situation has changed: currently optimal health outcomes among differ- the diagnosis and prognosis. For health health professionals generally prefer ent communities. care professionals the difficulty and the to inform cancer patients about their This article aimed to discuss the is- dilemma of whether to tell the truth or illness, albeit more often in some coun- sues involved in the disclosure of sensi- not, becomes obvious when having to tries than others [2]. However, decep- tive information concerning the health break bad news, especially if it involves tion is still sometimes used by members and prognosis of terminally-ill patients cancer. Buckman describes bad news as of the health care team while treating in an effort to enhance the understand- any information likely to alter drastically cancer patients [3]. It might be inten- ing of health care professionals. and negatively the patient’s view of his tional or unintentional and, apart from or her own future [6]. obvious lies, it can involve half-truths A successful relationship between and controlled release of information. Sources patients and health care providers de- There is no doubt that the diagno- pends on the establishment of trust, sis of a life-threatening disease such as The general aim of the study was to iden- which is strongly connected with truth- cancer is devastating for patients, and tify the trends in the issue by searching ful communication [7]. On that basis, informing such a patient of the diag- the contemporary literature databases truth-telling is considered to be an nosis has been described as “dropping (PubMed, WHOLIS, Cochrane Library) ethical issue as well as a moral obliga- a bomb” [4]. Health care professionals for articles published in English from tion by a large number of health care are the ones who have to carry out the 1960 to 2005 using the terms “palliative professionals [2]. Similarly, patients task of providing information to patients care”, “cancer”, “neoplasm”, “oncology”, expect that their health care providers about their diagnosis and prognosis. “tumour”, “truth telling”, “culture”, “bad will tell them the truth, just as health This task becomes more complicated if breaking news”, “deception”, “ethnic care providers expect that their patients the patient receiving the cancer diagno- origin”, “ethics” and “quality of life” as will tell them the truth. It has also been sis belongs to an ethnic minority which keywords. suggested that disclosure of truth fosters may have different cultural beliefs about The resulting list of 1507 articles was trust and is an essential element of the personal autonomy and death. The screened to eliminate duplicates and respect owed to the patient as a person importance of ethnic background in at- references that were not specifically rel- [8]. Therefore, the disclosure of truth titudes and practices in health is widely evant to our topic. Studies that involved aids the whole process of establishing an acknowledged. Ethnic minorities are diseases other than cancer, but which optimum patient–carer relationship. present in most countries and therefore also included a substantial proportion Another purpose of information cultural issues such as the one addressed of cancer cases, were included in this giving is to reduce uncertainty and to in the present article, should be assessed theoretical discussion. Evaluation of provide a basis for action [9]. It ena- and taken into consideration. the abstracts resulted in 234 references bles patients to make informed choices One of the most difficult ethical that matched the topic. All 234 were about their own health care and plan for dilemmas that health care profession- fully assessed and analysed by at least their future. It prevents harm, as patients als working in oncology settings face is 2 authors. who are not informed about their situa- whether, when, how and how much to tion may fail to get the medical support tell cancer patients about their diagnosis that they need [8]. Better knowledge and prognosis. The issue of truth-telling The issue of truth- affects patient and family responses in is still approached differently depending telling different clinical situations [9], engag- on the country and culture. The major- ing patients in their care and securing ity of physicians, in both developed and Since ancient times, philosophers their collaboration, leading to patients’ developing countries, tell the truth more and religious thinkers have debated adherence to the therapeutic or pal- often today than in the past. issues concerning deception and truth- liative schemes [10,11]. Uncertainty,

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doubt or misinterpretation do not offer options [16], many physicians feel un- The patients’ perspective a foundation for proper psychological comfortable and unprepared for the Two main issues are presented for pa- support [12]. interaction. There is a general consensus tients: first, the response to the stressful On the other hand, when disclos- that breaking bad news, while an impor- event of learning the truth and, second, ing the truth, there is always the risk of tant part of a physician’s job, is not an adaptation to the knowledge of a future shattering a patient’s hopes and dreams. easy task [4]. Therefore, physicians have with a chronic or even terminal disease. Hope seems to an essential mechanism a duty to improve their communication Patients seem to remember situa- for coping with cancer [13] and it can skills in order to assist the patient as tions where bad news is given in detail, be jeopardized by excessive knowledge much as possible at this difficult time. even some considerable time after the and detail. Revealing the stark reality of event [18]. A cancer diagnosis changes The nurses’ perspective a cancer diagnosis is often perceived as a person’s life and reduces his or her the passing of a death sentence by the There are few studies about nurses and opportunities drastically [22]. The me- members of the health care team and truth-telling, because communicat- dia constantly report complaints about this may also be the case for patients ing about new medical diagnoses and the way patients have received bad and their relatives [14]. One the most their prognosis is traditionally a physi- news. Disclosing the truth by just giving common concerns of health care pro- cian’s responsibility [17]. According clinical facts, without concern for the fessionals is whether they are justified if to Faulkner, the person delivering the sensitivity with which it is done or the harm results from telling the truth. bad news should be someone whom obligation to support the patient and Certainly, patients seem to be heter- the patient trusts and can feel most assist him/her in decision-making can ogeneous in their information require- comfortable with [18]. Even though for result in patients being as upset as if they ments. Full, uncensored disclosure, many patients this person is their nurse, were lied to [4]. which is insisted upon by one patient, breaking bad news is not a common But what do patients really want to may be utterly undesirable to another practice for nurses, with the exception know? The literature suggests that many [2]. It can be argued that it is impor- of nurses in the United Kingdom (UK) want to know the truth about their di- tant to take into account the individual [14]. agnosis [8]. However, there is evidence needs of every patient, recognizing that Many nurses believe that their role from the UK that a substantial minority full information disclosure may not nec- in communicating with patients is sec- of patients (13%) prefers to “leave it up essarily be desired or helpful for some ondary to the physician’s role [1]. This to the doctor” or “to have information patients at a specific time, even though is probably an easy way of disclaiming only if it is good” [23]. In countries the situation could change later. responsibility for a task that clearly no where truth disclosure is not a common It is important to consider the ethi- health professional wishes to do. Nurses practice the proportion of patients hav- cal issue of truth-telling from both per- often express feelings of powerlessness ing this view is even higher, with one spectives. There is no clear distinction and they experience an ethical conflict example of almost half the terminally-ill between right and wrong and therefore patients in a study in Spain [24]. when they are aware of non-disclosure a tenuous balance exists. of information by physicians [19]. What is important to note is that, in most studies showing that patients Nurses are constantly communi- prefer to be informed, the patients inter- cating with patients [20]. Especially Three perspectives viewed already knew about their illness in cancer nursing, communication is on truth-telling and therefore their opinions are likely considered one of the most important to be biased. Consequently, there is a The physicians’ perspective aspects. “Picking up the pieces” is a com- possibility that fewer patients want to In the field of oncology, physicians are mon scenario for the great majority of know in detail about their illness than is unavoidably forced to break bad news nurses involved in cancer care [21]. believed by health professionals. [15]. It is likely that, even in countries Since their role is to advocate for the where full disclosure is the norm, lies, patient in all situations, they too have a perhaps “white” (beneficial) lies, are duty to be more prepared and to con- Changing attitudes told from time to time [3]. tribute to ensuring that patients’ true to truth-telling Despite the abundance of articles, wishes are respected, or at least heard. research and training about how to per- The provision of health services is not a During the past few decades, health form the difficult task of giving a cancer “one-man show” and all health profes- professionals’ attitudes towards the bal- diagnosis and presenting treatment sionals have responsibilities. ance between telling and not telling the

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truth has changed dramatically. In 1961 [29], Canada [8] and Finland [30]. It informing the patients, they are not so 90% of a sample of 219 physicians in appears that in these countries health sure [1]. Family bonds are strong in the United States of America (USA) care professionals have little choice Greek society and, in an effort to pro- reported that they preferred not to about whether or not to tell patients, as tect them from despair and feelings of disclose a diagnosis of cancer to their current disclosure policies recommend hopelessness, families often exclude pa- patients [25]. Almost 20 years later, that they should provide full informa- tients from the process of information 97% of 264 physicians were open about tion. Furthermore, the patients’ right to exchange [27]. telling cancer patients their diagnosis participate in decisions about their care In a study in Spain 68% of patients [26]. This indicates a complete reversal is safeguarded by legislation. However, were not informed about their terminal of attitude in the USA. is it possible that these countries have cancer, but the approach is more pa- It used to be considered inhumane moved too far the other way? Have ternalistic. Only a few physicians take and damaging to the patient to disclose patients now lost the right not to have into account the family wishes. Their a diagnosis of cancer when the treat- “the whole truth and nothing but the decision whether to give full informa- ment prospects were bleak. Advances in truth”? tion to their patients depends basically treatment have since altered the course In Japan, family members play a ma- on their own views about the ability of of many cases of cancer, so that it is jor role in the decision whether a physi- the individual patient to cope with the much easier now to offer patients hope cian should inform a patient with cancer diagnosis [24]. at the time of diagnosis and this has also about the true nature of his/her illness. The evidence suggests that the issue removed the “wall of silence” that sur- Physicians discuss the cancer diagnosis of truth-telling in health care—what a rounded the cancer patient [4]. with the family before discussing it with terminally ill person wants to hear and Currently the debate within the the patient and commonly comply with how it is told—are is so embedded in USA is not whether patients should the family members’ requests. There is a the culture that it cannot be seen as sim- be told or not, but how and when to family hierarchy and Japanese patients ply an ethical dilemma [38]. Although it tell them the truth. However, revealing generally do not become the master of might be difficult to envisage a situation the diagnosis to a patient with terminal their own cancer treatment. Instead, they when not telling the truth will improve cancer is not currently fully accepted deal with their disease while their family patient care, frank disclosure may be in some countries without an Anglo- takes decisions [31]. Consequently, in considered inappropriate and insensi- Saxon cultural background, such as Japanese society only a small percent- tive, so that in some cultures “bad news” Japan, China, Greece, Turkey, Spain age of physicians (13%) inform cancer should be told to a family member of the and Italy. There is a tendency to disclose patients about their diagnosis [32]. patient who will divulge the information the truth more often than in the past Similar paternalistic practices are to the patient at an appropriate time and in these countries, but full openness is observed in Arab and Islamic cultures. In place and in a culturally approved and still not a common practice [27,28]. a survey in Turkey a significant propor- recognized manner. However, truth-telling is considered an tion of cancer patients (44%) did not ethical issue as well as a moral obligation know their diagnosis [33]. In Lebanon, by health care professionals [2]. where legislation allows non-disclosure, Possible justifications nearly half of physicians would usually for non-disclosure tell the patient about cancer [34].The International great majority of physicians (79%) in Not disclosing the truth to patients comparisons Kuwait would withhold the truth if the about their diagnosis and prognosis patient’s family requested them to do so can to some extent be justified in un- There are many differences among [35], and in Saudi Arabia 75% of physi- derdeveloped countries. In countries countries regarding health information cians preferred to discuss information with more-advanced health systems, disclosure practices. The purpose of with close relatives rather than patients patients with terminal cancer can be this article is not to make a detailed themselves, even when the latter were reassured that everything possible will comparison of rates of disclosure nor mentally competent [36]. be done for them and that they will to judge whether one practice is better Withholding the truth from patients die eventually with dignity and without than another. appears common in Greece too [37]. pain. In less-developed countries, where In the USA, as already mentioned, The majority of Greek health care pro- the quality of health care provided is the majority of patients are told of their fessionals believe that relatives should often poor and lacking in palliative care diagnosis. The same is true in England be informed, but when it comes to facilities, patients with terminal cancer

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face the prospect of dying in discomfort before and after disclosure of the cancer professionals should be more willing and pain. diagnosis; a study in the UK suggested to answer patients’ questions truthfully Another criticism of full disclosure that “the knowledge of cancer diagnosis when they indicate a preference to know, hinges on the degree of personal re- does not affect the way in which patients even if they do not express it verbally. In sponsibility that health professionals respond to quality of life questionnaires” the USA and the UK, in contrast, health nowadays delegate to patients. In the [40], while a study in Turkey stated that professionals should perhaps adopt a most developed countries health care “honest disclosure of truth does not more cautious attitude. Respect for the professionals are expected to involve worsen any dimension of quality of life patient should include identification patients fully in the decision-making in general or emotional functioning in of those who wish to know less and process. However, this can result in the particular” [33]. A systematic review complying with their choice. Finally, all patient being forced to make decisions. trying to answer the question whether health care professionals, in whatever Instead of offering guidance, health care telling the truth has a positive or nega- country, should bear in mind that eth- professionals nowadays present the tive effect on the patients’ psychological nic minorities with different cultural available options to the patients and distress came to no conclusions, as no backgrounds and different attitudes to expect them to choose. They may even studies fully met the inclusion criteria disclosure are present in almost every avoid stating their professional opinion [41]. The authors stated that the avail- society around the world. because they are afraid of being blamed able evidence was contradictory and Rather than trying to guess patients’ by the patient if something goes wrong. more rigorous studies were needed to preferences, a possibility would be to ask provide the evidence. them well before any diagnosis is made. In the absence of evidence as to Just as patients are asked for their pref- Effects of truth whether disclosing the truth or not af- erences about resuscitation should it disclosure on cancer fects patients’ quality of life, it is impor- became necessary or asked to give con- patients’ quality of life tant to reconsider the argument that sent before surgery, they could similarly telling the truth is universally “good” be asked to indicate their preferences Quality of life is a descriptive term and for the patient. Although truth-telling is about information disclosure. A ques- has a broad meaning. In health care preferable from a philosophical point of tion of this type should be addressed as a settings, it refers to patients’ emotional, view, when it comes to real life, theories matter of course to all patients, not only social and physical well-being and their cannot be applied so easily and may not the ones with possible cancer. Although ability to function in the ordinary tasks have the results expected. this idea is not currently easy to put in of living [39]. Especially in terminal practice, it is an alternative that deserves cancer care, where patients have limited further consideration. remaining life, one of the most impor- Conclusions This article has explored the dilem- tant targets is to maintain, and if possible ma of how to always satisfy the 2 ethical The duty of all health professionals is improve, their quality of life. Therefore, principles of veracity (truthfulness) and first and foremost to the patient. Being when assessing truth disclosure and be- beneficence (doing good). There is no truthful involves nurses and doctors fore coming to any conclusions, health answer that “fits” all patients in all coun- finding out what patients’ information professionals should take into consid- tries, but it is valuable for health profes- needs are. Further research on the sub- eration the effect, if any, that it may have sionals to have a broader understanding ject is needed in order to identify how on the patients’ quality of life. of the issues and to treat each patient as patients’ interests are best served. Until There does not appear to be much an individual. research on the relationship between we know more, a cautionary note is truth disclosure and quality of life. Ac- indicated. cording to Montazeri at al., in most stud- Although desirable, full disclosure Acknowledgement ies patients’ quality of life was assessed and openness in every case may be unre- after the diagnosis of cancer and after or alistic. A consensus that lies somewhere The authors would like to thank Mr during each course of treatment, raising between the 2 extremes may be more Iraklis Zografos, historian and professor questions about the validity of these appropriate. In Asia and south-east Eu- of English, for his support and contribu- studies [40]. Two comparative studies rope, where revealing the diagnosis is dif- tion towards writing the above manu- have looked at patients’ quality of life ficult because of cultural issues, health script.

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