It is challenging to write about truth telling in medicine at a time in history when transparency and open access to information dominate our culture. Young adults now entering the medical profession cannot remember a time without social networks, or the era before data and instant knowledge with commentary were almost immediately available to anyone with access to the Internet. And yet the medical and nursing literature continue to debate therapeutic uses of truth, the ownership of data, and the consequences of receiving either sufficient or inadequate information to empower patients to decide their own medical fate. Our training and clinical experience in malignant hematological disorders and cancer inform our chapter and our orientation towards truth telling in medicine. Palliative care and the treatment of pain pose unique challenges in communication, given the imperative to alleviate suffering and to provide comfort. We do feel that handling difficult news and information can be approached in a systematic way and that clinicians across disciplines can benefit from a clear strategy and similar guiding principles.

In the United States and other countries with open access to technology and a firm orientation towards scientific medicine, patient autonomy usually trumps other ethical and social concerns (Schneider 1998). Patients increasingly participate in making decisions about all aspects and phases of treatment. Such involvement demands they be adequately briefed and demonstrate appropriate understanding of benefits and risks associated with various treatment modalities. Medical students are taught to think of the doctor–patient relationship as a collaboration between partners based on mutual respect, trust, and common goals. Since this construct depends on honest disclosure, the conversation has shifted from whether or not to provide information to how best to communicate in order to ­preserve hope and facilitate coping. Clinicians now juggle demands to inform with their commitment to protect patients from harm that may arise from confronting dire situations. In this chapter, we examine the evidence that supports open and uncensored communication and also recognize that practice is typically informed by opinion and instinct in the context of pain and palliative care.

Patient advocacy organizations in Western countries have clearly endorsed the practice of providing information as a means to empowerment. Research confirms that access to clear information can assist patients in coping with an uncertain future and provide support for their decision. Feeling better prepared for a consultation with the specialist often allows patients and their relatives to ask more questions and improves the likelihood that more information will be exchanged in the time allotted. It is also helpful to bear in mind that many educated patients want to be informed but may still defer to experts to guide them in making decisions. While it is difficult to anticipate how medical practice will evolve, it is likely that future patients will not only read their own medical records and have the chance to review their laboratory data and surgical reports, but will also have a limited role in editing their electronic charts, thus adding their distinct voice to the narrative that contains their medical history. Indeed patients at many medical centers in the United States already have access to their charts via secure sites. So within this construct, the idea that truth and information are regulated only by physicians is likely to become obsolete. The “balance of power” in the doctor–patient relationship, which firmly tipped in favor of the physician during the late nineteenth and most of the twentieth centuries, has also decisively shifted back towards patients (Furst 1998).

We anticipate that personal health information will increasingly become available to those who wish to have it and that medical professionals will continue to need to meet the challenge of providing the interpretation, guidance, and support that will be required in the face of abundant raw data. What remains to be defined are the parameters for optimal “dosing” of such information so that it is helpful for individual patients. Colleagues who think of telling the truth as a therapeutic intervention may justly warn that confronting the data in isolation may lead to increased anxiety. Future research and innovative modes of providing emotional coaching face to face or remotely with technical assistance (via telephone or videoconference) will be indispensable to define a “new normal.”

There are many ways of defining what constitutes “truth” in medical settings. Philosophers argue that truth may be buried in a communicative act and gains significance for the patient through a construction of meaning (Surbone 2006). Truth then is relative and can only be understood in the context of a person’s life rather than construed as a mere recitation of medical diagnoses, interventions, and possible outcomes. This argument provides a powerful role for physicians in shaping a patient’s narrative and mediating their understanding of events and possible choices and constitutes an aspect of clinical practice that many professionals find very rewarding (Surbone 2000).

Research has shown that the majority of American, Australian, and European patients wish to be informed of their specific diagnosis and prognosis, and, with guidance and support, can effectively cope with even the grimmest information (Jotkowitz et al. 2006; Bruera et al. 2000; Spiegel 1999). It bears emphasizing that this is not an approach that appeals to all individuals or cultures. Clinicians need to recognize and respect the preferences of patients and families who prefer to delegate decision-making to a designated family member and to remain “ignorant.” These situations are not infrequent and demand of clinicians a significant degree of cultural humility and consideration of values that may even clash with our prevailing practices. Our advice is to document clearly who is in charge of information in the context of the family unit and to establish without any doubt that the patient clearly prefers this method of communication. For most of our patients, receiving information is the first step towards coping with difficult news and regaining control over their own destiny. Another important aspect to help patients cope successfully is to preserve and protect the family unit and important social relationships. Caregivers need and want to know about the nature of the illness especially if it is not curable, although many are not told and are consequently unprepared in the final days of life (Dahlstrand et al. 2008). An important principle guiding palliative care is to help patients and their loved ones to share feelings evoked by the new reality and to assist each other to move progressively closer to fully accepting the situation without despair (Parkes 1978). In contrast to fears about realistic discussion of a poor prognosis causing depression or emotional damage, several recent studies have demonstrated instead that honest disclosure facilitates coping, and that continued aggressive care for advanced cancer is associated with poorer quality of life, increased depression among patients, and a complicated bereavement for surviving relatives (Wright et al. 2008). Other data indicate that bereavement outcomes of surviving caregivers may be improved when good communication was present during the patient’s last days and the caregivers were prepared for the eventual outcome (Hebert and Schulz 2006).

Physicians have always worried that full disclosure of difficult information and a clear rendition of a limited prognosis will lead to despair and may even hasten a patient’s decline and eventual demise. Studies conducted fifty years ago suggested that doctors themselves preferred to be informed of the diagnosis and outlook if they had an incurable illness although they were not prepared to provide such information to their patients. This apparent contradiction captures a dilemma that confronts clinicians even today (Fallowfield 1997) and can be best understood by realizing that avoidance of truth telling is more commonly a symptom of the clinician’s own discomfort, perhaps reflecting the doctor’s own narrow emotional range (Fallowfield 1997). Evidence suggests that individual doctors’ responses tend to be similar with all patients (Fallowfield 1997) and that moral judgments and decision-making is driven by automatic emotional responses (Greene et al. 2008, 2009; Greene 2003; Greene and Haidt 2002). Rather than resorting to abstract reasoning, doctors and nurses respond to moral dilemmas with “gut reactions.” The interplay between emotional responses and rational constructions, shaped by genetic, cultural, and professional codes, is the focus of ongoing neuroscientific research. We expect the information that will emerge from these studies will provide new foundational arguments that capture the complex moral and practical dimensions of clinical encounters and shed light on how doctors regulate their own feelings and expressions of empathy.

It is easy to imagine that withholding certain facts may appear as a deplorable omission to some and a charitable act to others. Avoiding the truth or disclosing only very limited aspects of it (which is more common today than outright deception) could be construed as kindness but may still cause harm. If a sick person is referred for tests and prescribed treatments that fail to relieve symptoms, and then told nothing, the message conveyed is that the truth must be so horrible that it cannot be discussed and the patient may feel both isolated and anxious (Katz 1986). Minimizing or omitting important information may indeed make the patient happier in the short term but violates the patient’s trust and the future credibility of the physician (Simpson 1982). The practical consequence is that it excludes the doctor from being able to provide solace in the future and patient and doctor lose the opportunity to create an enduring and therapeutic alliance.

A carefully conducted ethnographic study of patients with metastatic lung cancer treated in the Netherlands provides a framework for understanding the consequences of this collusion between doctors and patients (The et al. 2000). Well-intentioned specialists and patients regularly managed to focus on logistics of treatment, latest test results, and other quotidian issues, and repeatedly failed to address the bigger picture and ultimate likely outcome. The results were predictable: when treatments failed and time suddenly ran out, patients and their relatives were surprised and unprepared, and bereaved relatives expressed regret over much that had been left undone.

Truth is not just an item traded between doctors and patients. The same instinct to protect and minimize suffering leads some patients to lie or withhold discouraging information from their spouse, children, or caregivers. Patients may minimize their symptoms or ask few questions during office visits in order to protect or buffer their loved one. If the doctor fails to notice the cues that alert him to this behavior, he may enable the avoidance by stressing only positives and framing information in the most favorable terms.