Abstract
In medical practice, physicians are often faced with tough ethical and moral dilemmas, one such example is the reoccurring conflict between a patient’s hope and the truth. This paper explores two ethical dilemmas centered on compassion and the reduction of suffering: truth-telling with terminal patients and the clinical use of placebos. In each case the disclosure of truthful information could interfere with hope and suffering relief.
Introduction
Medical professionals have the goal and duty to provide compassionate care to all patients in hopes of reducing suffering, but suffering can occur when the patient’s hope is in conflict with the truth. Ethical theory and medical practice state the importance of sharing truthful information with a patient. It is commonly accepted that to provide the best and most ethical medical care a patient should always receive truthful information in hopes of establishing a trusting relationship. However, another widely accepted aspect of quality medical care is to reduce a patient’s suffering. This paper does not argue against the ethical and clinical importance of truth-telling, rather it presents two clinical cases that are generally considered “unethical”, non-disclosure of terminal illness and the clinical use of placebos. The two cases work to show that the truth may cause a patient more suffering due to the removal of hope and that truth telling might, at times, be ethically ambiguous.
Additionally, this paper does not try to make a ruling about what should be ethical, nor does it provide a strong enough argument to go against commonly accepted practice and theory. Rather, the intent is to provide examples of where the principle of truth-telling may not always be so clear cut. Additionally, the paper works to incorporate the literature to include ethical theory, physician and patient perspective, and clinical studies related to patient outcomes to provide a clear picture of the current perspective on the two topics, non-disclosure of terminal illness and clinical placebos.
For brevity, this paper only looks at these topics from the physician’s perspective as the author is in training to become a physician and the majority of the published literature is from that perspective. However, going forward many other health professionals, especially nurses, deserve to be a part of these conversations especially as these professionals are often more central and crucial to the management of a patient’s illness.
Lastly, this paper adopts the principlism framework and admittedly does not consider other theoretical frameworks. It is important to realize that this discussion might be very different if approached from a different ethical framework. In both of the cases that are discussed there is a conflict between autonomy and beneficence, or at least perceived beneficence. In the US, autonomy is usually considered the most important ethical principle. To make autonomous decisions, patients would need truthful information and the freedom to make the decision. But what if the truthful information needed for autonomy causes the patient more suffering?
Non-disclosure of terminal illness
In a speech to Harvard Medical School graduates, Oliver Wendell Holmes said, “beware how you take away hope from any dying being”. 1 This hope at the end of life might be important for empowering a patient and reducing their experience of suffering. However, in the case of terminal illnesses, the truth about diagnosis or prognosis can interfere with a patient’s hope. The question emerges of what should be done when telling the truth would take away a patient’s hope? For example, a patient believed he was cured following recent surgery for bowel cancer despite the requirement of additional tests and was looking forward to vacation to meet his grandchildren. His wife knew he had developed metastases but she believed telling the patient the news would remove his hope to live. His wife asked the physician to withhold disclosing his condition until after the vacation. 2 This example showcases the conflict physicians face between maintaining hope and truth-telling.
It is important to realize physician’s words matter in maintaining a patient’s hope. Physicians often struggle to balance truthfully informing the patient about their condition and their role in maintaining a patient’s hope. 1 Physicians often are uncomfortable removing hope.3,4 Some argue that because the Hippocratic oath requires physicians to not harm their patients that deception is an acceptable means to this goal. 5 Telling the truth could remove any perception of improvement and cause significant distress, suffering, and loss of motivation.1,5 On the other hand, hope improves the patient’s well-being and provides meaning and empowerment to persevere through difficult times. 1 While most physicians find it wrong to knowingly lie to patients, there is ethical debate as to whether withholding information is acceptable to maintain hope. 2 Another question to consider is who is the owner of the information to be withheld? While the physician has insight into and control over the knowledge, the information pertains to the patient.
The role of hope
Hope plays an important role in patient’s experiences, motivation, and decision-making. 1 Hope can play a role in improving symptoms and survival. 6 Two physicians noted that over a year and a half they had “seven patients who died [unexpectedly] within 48 hours of being told that there is no hope of cure”. 7 While this is just a personal observation of an association it shows an important point that hope may be central to a patient’s desire to continue living. For example, one study of 51 lung cancer patients found that hopeful patients based on a quantifiable scale had decreased levels of cough, pain, fatigue, and depression. 8 Hope is also related to coping in cancer patients. A study of 183 cancer patients found that there was a direct relationship between scores on the Herth Hope Scale and the Jalowiec Coping Scale indicating that hope was related to effective coping. 9
While hope is beneficial, non-disclosure of medical information is a conflict between patient autonomy and a physician's goal to prevent harm, nonmaleficence.3,10 When physicians decide to withhold information, they are acting paternalistically and are not respecting patient autonomy. 5 When physicians were surveyed about their experiences of disclosing terminal illness to a patient one theme that emerged was a self-perceived duty and obligation to fully inform their patients. 11 Some argue that physicians have a responsibility to cultivate patient’s hope, a benevolent act. 6 The question remains “are there situation where the doctor, in attempting to act beneficently, can in some situations override individual autonomy, by not telling the whole truth”? 6 In the United States, and other Western cultures, patient autonomy and full disclosure of medical information is highly valued above other ethical principles.3,12 However, in many other cultures there is a common practice of non-disclosure of terminal illness. 3 For example, traditionally in Japan, and to some extent still today, physicians believe they should protect patients from negative effects by withholding cancer diagnosis or prognosis.13,14 One notable example of this in Japan occurred in 1987 when a group of doctors determined a pathology specimen from Emperor Hirohito’s pancreas was indeed terminal cancer. However, the group unanimously decided not to tell the Emperor nor the public the diagnosis and instead announced the Emperor had chronic pancreatitis. Following his death the truth emerged but no one in Japan was surprised because it was common for all patients not to be told they have cancer because of a view that cancer equals death. A study from a local newspaper around this time found that 76% of physicians believed that if there was a diagnosis of terminal cancer the patient should not be told and 65% of the Japanese public said that they would not tell a sick family member they had terminal cancer. 15 The difference between these cultures and the culture in the United States can be related to different ethical values such as different views on autonomy vs nonmaleficence and the role of a family and the collective nature of these societies.
Truthful and honest information
In the United States, patients have an ethical right to truthful and honest information to make informed decisions. 5 Self-determination and autonomy allow patients to make informed decisions that are reflective of their goals and values. 14 If physicians do not tell the patient the truth, they risk losing the patient’s trust.2,4 On the other hand some have argued that telling the truth can also harm patient’s trust. One Oncologist who felt that disclosure could interfere with forming trust said “I find that if you, early in your relationship […] offer a lot of negative-sounding information, I think it interferes with the development of trust in the relationship.” 14 Patient trust in their physician is crucial for beneficial medical outcomes such as compliance and symptom improvement.3,16 Despite the benefits of hope discussed previously, non-disclosure in effort to maintain hope may not be as beneficial as thought. While finding out a terminal prognosis could cause a patient great distress, the uncertainty of not knowing could also be distressing. 3 Patients kept in the dark could have increased “uncertainty, anxiety, and distress”. 4 Additionally, patients with false-hope may seek futile treatments and suffer more by undergoing excessive and aggressive treatments.1,3 However, the alternative must be considered; if a terminal diagnosis is withheld it might prevent the patient from undergoing medical treatments that, although won’t improve the condition or quantity of life, could improve the quality of the remaining life. This is an important consideration and it should be emphasized that the quality of life should be the focus of a physician. Relatedly, a lack of disclosure of a terminal illness could prevent a patient from receiving the benefits at the end of life of hospice.
Another reason truth telling is important, is that physicians have limited knowledge of a patient and how they would react and respond to bad news.16,17 It is unfair to withhold information based on a prediction of the patient’s response. 16 The physician may not have the most complete knowledge of what would be best for the patient. 5 Best interest is a large topic in the field of ethics and deserves much more discussion than can be accommodated within this paper. Typically, it is accepted that physicians lack knowledge of what is in the patient’s best interest because they do not fully understand the patient’s values, wishes, and beliefs. However, it is a bit more complex because patients, even if given full medical information, might lack the medical background and interpretation of the information.
Information patients desire
In a number of studies the majority of interviewed patients from Western countries would like to be fully informed of their condition and participate in medical decision-making.3,4,10 In one study, 79% of studied cancer patients in Scotland preferred complete disclosure of medical information, all the information possible. 18 Terminal patients rated honest communication as an extremely important factor. 19
In the past, cancer patients were hidden from their cancer diagnosis to protect them from the poor prognosis. 14 Due to growing treatment options, increased survival rates, and decrease in physician paternalism the practice of truth-telling in oncology patients has changed. 11 Ninety percent of surveyed US physicians preferred to not disclose a cancer diagnosis in 1961, but in 1977, disclosing cancer diagnosis was preferred by 97% of surveyed physicians. 20
While oncologists favor disclosing the diagnosis, they are reluctant to disclose the prognosis. 14 Physicians want to preserve hope but they also want to keep patient’s expectations realistic. 14 Physicians fear that a poor prognosis will remove the patient’s hopes and might withhold or modify the information shared.11,14 Interviewed oncologists believed disclosure of diagnosis was necessary but complete honesty about prognosis was practiced only if there was a perceived need to do so.11,14 Another reason, that discussing diagnosis and treatment is preferred is that prognosis is more uncertain and can often be unreliable. 11
Physicians tend to explain, “what patients want and need in the way they can comprehend”. 11 Many physicians allow the patient to lead the discussion and ask the questions. 11 Physicians will answer the patient honestly but in doing so will only give the patient the information they request. Physicians will also tell the patient any information they feel is necessary while presenting it in a way the patient can understand. 11 The oncologists interviewed tended to only provide additional information when asked or if the patient could “emotionally handle the information”. 14 This method allows the physician to maintain a patient's hope while being truthful.
When physicians communicate a prognosis they will tell the patient if the cancer is incurable but they tend to avoid percentages and statistics. 14 One reason is that patients tend to overestimate the treatment benefits and their likelihood of survival. 14 If physicians use statistics, they qualify the numbers based on the uniqueness of individuals and significant variation. 14 Physicians felt that telling the patient the odds was detrimental to their hope. 13 Physicians noted a few times when they felt the need to explain a prognosis: if the patient asks, if the patient has unrealistic expectations, or if the patient is greatly declining and needs to make end of life decisions. 14 Often to increase a patient’s hope, in a realistic manner, a physician might mention clinical trials and that despite statistics there is always a chance. 14
Physicians should not create false-hope, but they should be proactive in helping a patient find other sources of hope. 1 There is a difference between withholding information about their condition and helping them to see the best outlook on their remaining life. While it is unethical to provide false-hope to terminally ill patients, there are still ways that physicians can work to maintain their spirits, hope, and outlook. When discussing the negative prognosis with a patient the physician should not just provide facts but also inspire the patient to have hope. 1 Often times hope focuses only on a ‘hope for a cure’ and when a patient receives a terminal diagnosis, all their hope is lost. 1 It is important to realize patients can still have other forms of hope even when the hope of a cure is gone. 1 These other sources of hope could include “hope for freedom from pain, hope for accomplishing something before dying, hope for dying a good death”. 11 Physicians can help patients search for small hopes and milestones to look towards including seeing grandchildren, or making it to a family member’s graduation, or reaching an anniversary. 1 Through communication with the patient, the physician can learn what matters most to them based on their goals and values. 21 When patients begin to lose hope, it is important for their support system, from family to friends to physicians, to help them imagine new sources of hope. 10 Because hope is so important to a patient, physicians should be cognizant when discussing bad news with a patient to balance it with discussions of hope and optimism. 6 When a patient receives a terminal diagnosis their world and identity is changed. It can be a very dehumanizing experience. 22
Patients often complain that their care is impersonal at the end of life. 22 Physicians should work to maintain dignity in terminally ill patients. 23 When a patient does not have dignity they can feel depressed, loneliness, and hopelessness.23,24 Even though these patients may not be receiving active medical interventions they still deserve compassionate medical care and not to be abandoned. Patients at this stage of their life are searching for meaning and purpose and physicians through cultivation of hope can help patients to find new meaning. 23
Placebos
Placebos are another situation where truth-telling and hope conflict reduce a patient’s suffering. Placebos are defined as “any therapy prescribed knowingly or unknowingly by a healer or used by a layman for its therapeutic effect on a symptom or disease, but which actually is ineffective or not specifically effective for the symptom of the disorder being treated”. 25 As a result, the definition of placebo can be problematic. By the definition above, and many similar definitions, the focus is on how placebos are ineffective. While placebos by definition have no known physiological effect and don’t ‘work‘in a chemical sense, their psychological effect is key and can at times be effective for addressing symptoms or a disease leading to a positive response. Both physiological and psychological benefits are important in the practice of medicine. It is important to note that placebos are not appropriate in every situation but this point will be discussed in detail later. Placebos can include pills, injections, and even procedures. 17 The placebo effect occurs when, due to expectations of benefit and faith in the treatment, the therapy improves the illness despite its perceived ineffectiveness. 26 It is important to point out that a placebo need not cause a placebo effect and the placebo effect can occur in the absence of a placebo but, for the purposes of this paper, we will assume that both occur interchangeably. Nowadays, placebos are typically associated with control groups in clinical trials; however, placebos have existed for a long time and were historically used when treating patients. 26
Placebos work through patient’s attitudes and hopes that the treatment will work rather than through physiological mechanisms. 27 A patient’s expectation of getting better and the treatment helping is central to the placebo’s efficacy. 27 Placebos work because of a patient’s hope, faith, and expectations of improvement from medical care. 17 Placebos have consistently been shown to provide some therapeutic benefit to patients and can even be more beneficial than the actual drug. 26
Placebo examples
Typically, placebos work to relieve aspects of illness, such as pain, but they have even been shown to improve physiological aspects such as lowering blood pressure and blood-sugar.17,27 There are many examples of improved outcomes of placebos but to paint a picture I will mention just a few. In a meta-analysis of 19 double-blind clinical trials, which included 2,318 patients, placebos were found to have about 75% the effect on reduction of depression compared to the treatment antidepressant. 28 In a meta-analysis of 8 clinical trials placebos, either a syrup or capsule to match the treatment, were found to have 85% the effects of the antitussive medicine, either codeine or dextromethorphan, in the reduction of cough severity, number of bouts, or frequency, in patients being treated for cough related to URI. 29 In a meta-analysis of 45 randomly controlled clinical trials for irritable bowel syndrome treatment, with inclusion criteria including greater than 20 IBS patients being treated for at least two weeks, the measured response to an oral placebos was found to be between 16% and 71% the response of the active treatment. 30 In a double-blind placebo-controlled study of ultrasound use for pain from wisdom teeth removal, the positive effects on pain and inflammation were mediated by the placebo effect as the effect was the same regardless of whether the machine was turned on or not. 31 In a blinded study of 17 patients with angina pectoris from coronary artery disease patients either had surgery which ligated the internal mammary artery or the placebo surgery where they were placed under local anesthesia and the vessels were isolated but not ligated. There was no difference in subjective improvement of symptoms between the treatment and the placebo surgery. 32 Lastly, in a double-blind study of 28 patients with acute facial pain the saline injection was actually more effective and led to a greater reduction of pain than the local anesthetic mepivacaine 0.5%. 33 While these studies show the benefit of placebos in a wide variety of settings, it is unknown whether they work solely through a psychological effect or whether there is some unknown physiologic effect that is impacting how they work.
While the benefit of placebos might not be greater than the current acceptable medical intervention, placebos have consistently been shown to provide some benefit in the relief of suffering. This could be particularly useful when there is no current treatment or the current treatment would provide more risk than benefit to the patient. For a terminally ill cancer patient, the side effects of continued chemotherapy may cause more harm and suffering but if the patient wants everything done and would likely lose hope if treatment is stopped a placebo may be beneficial. Another example when a placebo would be beneficial, is for a patient with chronic pain. Physicians prefer to start with the least powerful and smallest dose of treatment and increase until it is effective. 17 In this case, the physician could start with a placebo and if that does provide relief, switch to an active medicine.
The placebo effect is rooted in deception of a patient, who is expecting medically proven treatment, through paternalistic action.26,27,34 By nature placebos are deceptive, the beneficial effect of placebos are based on cultivating false expectations and misleading patients. The physician deceives the patient because of the potential benefit. 17 Deception and lack of transparency can lead to mistrust and can harm the doctor-patient relationship.26,34 Patients have a right to be truthfully informed regarding the treatment and care.17,27 Placebos disregard the patient’s autonomy to make informed decisions regarding their care.17,34 While placebos can provide significant benefit and may even be in the patient’s best interest, compassionate deception is hard to justify. Additionally, some might argue that it is unfair for patient to pay for a drug that is inactive and does not have a biochemical function. 17 It is important to push back against this point because in the uses of placebos being discussed, they do indeed work, just perhaps not in the traditional sense. Additionally, consideration should be given to what the patient is paying for the drug or the treatment. While the placebo may cost less to manufacture there is still value in paying for it as there is still a benefit, although a lower cost may be indicated.
Open-label placebos
Although benevolently given, placebos are generally considered unethical, due to the deception of patients, unless given to a consenting patient. The American Medical Association Council on Ethical and Judicial Affairs states, “physicians may use placebos for diagnosis or treatment only if the patient is informed of and agrees to its use”. 34 As placebos are rooted in deception, would this prevent placebos from being ethically used? Surprisingly, open-label placebos can provide benefit to patients. 35 Open-label placebos are placebo treatments that are used transparently with patient awareness and understanding; this form of placebo allows patients to have autonomy and consent to treatment. 35 Patients are told that the proposed treatment is inert and is not active, but also that the drug has been found to provide benefit to others and that it may provide relief of symptoms to the patient. 36 The wording allows patients to have the perception that the treatment may help them. 36 One study of heart pain intensity and unpleasantness found that there was not a significant difference between the ‘deceptive placebo’ cream and the ‘open-label placebo with rationale’. 37 In a study of chronic lower back pain, individuals in the open-label placebo group had greater pain reduction than those in the no treatment group. 38 In a study of irritable bowel syndrome, compared to those receiving no treatment, the open-label placebo group had a greater reduction of symptoms. 39 However, in a study of depression the open-label placebo with rationale did not have any major difference from those without treatment. This study indicates that an attitude of hope about a treatment may be necessary for a placebo to work and that open–label placebos may take away this hope for some patients. 40 While they may not always be effective, open-label placebos provide a means to maintain a patient’s trust while continuing to provide them with hope. About 76% of patients surveyed found open-label placebos acceptable if the physician thought it would be beneficial. 41
Role of expectations and communication
Additionally, the benefits of placebo treatments provide insight on the importance of patient expectations, perceptions, interactions, and communication. “The whole atmosphere around treatment” and the connections made with patients can have a significant impact on the placebo effect. 42 The placebo effect improves with increased trust. 26 Additionally, the attitude of the physician plays a major role in the effect of the placebo; physicians should be encouraging, hopeful, and enthusiastic to improve the patient outlook. 26 When a physician spends time listening to the patient, less subsequent visits are required and medical outcomes are improved. 43 The way physicians communicate and provide treatment can significantly influence patient outcomes. 44 In one study, equal amounts of IV pain medication Ketorolac was given to patients who had chest surgery one group was given the medication automatically at certain times throughout the day without their knowledge of when, while the other group received the same dosage and timing of medication, but the medication was knowingly given by a physician. The results found that, despite the same dosage and timing, the patients who were aware they were receiving pain medicine had about double the pain relief; which shows the importance of the patient’s expectations of pain relief. 45 In another study, patients with an undiagnosable medical condition were split into two groups, one group was told a made up definitive diagnosis and a time range for improvement while the other group was told “I can’t be certain what is the matter with you”. The patients who experienced certainty and positive attitude were more satisfied and had greater symptom improvement despite both groups receiving no treatment. 46 Patients having one of seven type of common abdominal surgery, such as hernia repair and cholescystectomy, were split into two groups, one group had a discussion prior to surgery on postoperative pain and expectations in an encouraging manner, while the other group only had the general anesthesia consent discussion; the patients who had the additional conversation had a shortened hospital stay and half the requested pain medication due to positive expectations. 47 The knowledge from placebos should be used to help enhance the effects of all treatments.
Conclusion
Physicians are tasked with the obligation to work to reduce a patient’s suffering. However, in clinical practice hope and truth telling can interfere with each other when working towards the goal of reducing patient suffering. Two examples of clinical based ethical dilemmas were used to explore how compassion can provide a new and beneficial perspective to address dilemmas between truth and hope and, more broadly, beneficence/nonmaleficence and autonomy.
Footnotes
Declaration of conflicting interests
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author received no financial support for the research, authorship, and/or publication of this article.
