“Bad News” Communication in Palliative Care: A Challenge and Key to Success

INTRODUCTION

An important skill of any healthcare provider is the ability to effectively communicate, an especially key element in the relationship between physician and patient. Successful and effective communication results in conveying and listening to information in a manner that is most appropriate to both the recipient and the provider of the information. Being “most appropriate” means that the goals of the interchange, including content, intent, and expectations, are met and understood by those involved. The approach in communicating information, predictions, and prognoses to patients and loved ones will have a crucial affect on their current and future behavior, as well as potentially on treatment and illness outcomes.¹

CASE PRESENTATION

A 94-year-old female with metastatic breast cancer was residing in a nursing home. The staff felt that she would benefit from transfer to an attached palliative care unit because of difficulties the nursing home staff were having meeting her symptom needs, especially bone pain. The family, which included a son, a daughter-in-law, and a granddaughter, seemed interested in the proposed transfer to the palliative care unit. The nursing home physician, trying to be supportive in her explanations of the expected prognosis and palliative care needs, suggested to the family that it was difficult to anticipate the patient’s life expectancy, and that it could potentially be some weeks before she died.

The family, including the granddaughter, who seemed to be the family spokesperson, visited the palliative care unit and spoke to members of the care team. The team discussed the philosophy of palliative care and the focus on symptom management. They explained the likely course the grandmother would experience during her stay on the unit. From the staff point of view, it was deemed that the patient was pre-terminal with a potential life expectancy of no more than 2-3 weeks. The next day, a Friday, the patient was transferred to the unit because she appeared to be very uncomfortable, and the nursing home staff felt that they could not adequately provide effective pain management. When the unit’s attending physician evaluated the patient, he concluded that she was terminal with Cheyne-Stokes respiration and expressions of severe pain that interfered with nursing care, including the basic process of turning the patient.

The physician ordered morphine subcutaneously, with the dose based on previous morphine doses on a flexible dosing schedule that allowed for breakthrough pain. Supplemental haloperidol was ordered for agitation aggravated by the pain. Over the next 36 hours, the patient’s symptoms gradually came under control. The granddaughter expressed concern about the decline in the patient’s wakefulness. Medical advice was sought from the weekend on-call physician. With a decrease in medication, the patient began moaning again, and therefore the dose was increased to address the painful symptoms, much to the dismay of the granddaughter.

The patient died that weekend. According to the nursing staff and the on-call physician, her symptoms were apparently well-controlled. The physician explained to the granddaughter the rationale behind the medication orders, and tried to assure her that her grandmother was comfortable and that she was in the process of dying. He emphasized the importance of adequate pain management in her final period of life. She died with the staff believing that they had achieved the patient’s palliative care needs; the patient’s son, granddaughter, and daughter-in-law seemed satisfied with the care.

A week after the death, the unit’s social worker received a letter outlining a list of care concerns expressed by the granddaughter, on behalf of her family. The letter complained about inadequate communication, the rapidity of the death, poor symptom management, and the apparent lack of communication between various members of the healthcare staff, especially the weekend nurses and on-call physician.

A meeting of all of the members of the team who reviewed the letter concluded that if there were any significant deficiencies, they occurred in the initial discussion about prognosis, first from the referring physician, and then at the initial team meeting prior to the patient’s transfer to the unit, with a lack of communication about the gravity of the patient’s condition. It was felt that perhaps the information was not direct and sufficiently clear about what to expect from pain management and its impact on the level of consciousness. Despite the granddaughter being provided with a brochure and FAQ sheet developed by the staff to help family members understand the processes involved in palliative care and the dying process, they accepted that perhaps under the stress of the transfer, the information provided in these written materials was not read, and the face-to-face communication was inadequate.

IMPLICATIONS FOR CARE AND COMMUNICATION

In end-of-life care, and especially palliative care, effective communication with patients, caregivers, and loved ones is of vital importance. Poor communication can result in the family having significant misunderstanding of end-of-life processes.^2-6 Discussions with patients tend to encompass such end-of-life decisions as treatment of sepsis, continuation of medications for other conditions, ongoing blood transfusions, and end-stage hydration. Physicians and other members of a palliative care team traditionally also offer emotional support and empathy.

An important aspect of communication with the patient and family is when the discussion falls within the scope of giving “bad news.” The attending physician has a professional duty to truthfully inform the patient about his or her condition.^7,8 In this situation, news is apt to take on the dichotomous socio-moral guise as either “good” or “bad.” While the entire notion of “bad news” is primarily experienced subjectively in end-of-life care, bad news is generally associated with either a terminal prognosis or death.¹ The process by which the bad news is communicated may decisively alter the dynamic of the physician-patient relationship positively, negatively, or exploitively.⁹ Western society generally shuns explicit discussions of death and dying. There is a common inclination to use euphemisms like “passed away” or “departed,” or overly optimistic prognoses,^10,11 or even omit them altogether¹² as a way of masking cultural fears. Sometimes, this can undermine the clarity of communication, causing the recipient of the message to misinterpret or fail to become fully cognizant of the intended meaning and prognostic implications.

There exists a further professional obligation to practice within the regulatory requirements of the designated jurisdiction, and to understand and comply with the ethical principles and regulatory requirements of that jurisdiction. The ethical principles of autonomy, beneficence, non-maleficence, and justice form the basic framework usually referred to in North America. Within those principles, it would be expected that the clinician adequately, and in a forthright and supportive manner, discuss with patients and/or their caregivers the prognosis, even if it contains bad news. It is understood that the process of breaking bad news is difficult. Unfortunately, many practitioners find it personally troublesome, and therefore take steps to avoid undertaking such discussions. The intended message may then not be communicated in a clear, coherent manner. Since patients have the right to refuse being informed about some or all details of their illness,¹³ or may not value their exercising of autonomy or not consider it relevant, these opposing considerations become problematic when attempts are made to communicate in a meaningful and forthright manner. Furthermore, individuals vary considerably in terms of coping mechanisms when receiving bad news about a diagnosis or prognosis.¹⁴

Problems concerning the effective communication of bad news include physician fears of being blamed for the illness, not being able to provide answers to all questions, causing additional pain, harm, and suffering, and being the subject of patients’ and families’ anger over the illness. This reflects a state of “psychological ambivalence” on the part of the physician.¹ In addition, many physicians lack the formal training in strategies for breaking bad news,¹⁵ so tactics used are intuitive at best.¹⁶ This could very well be the motivation of the first physician in the nursing home described in the case above. This physician could be guilty of demonstrating a “positive self-fulfilling prophecy,” where the expressed favorable predictions are given in hope of eliciting corresponding favorable outcomes.¹ Both possibilities obfuscate positive outcomes. It does not necessarily follow that compassion and sensitivity surrounding bad news should be exercised in euphemisms or as a topic that should be avoided or “tip-toed” around. Poor communication between practitioners and patients and their families can negatively affect patient care and quality of life.

While many individuals, including healthcare professionals, pride themselves on being excellent communicators, many have difficulty striking a balance between being sensitive, empathetic, and compassionate while not camouflaging the bad news. How to find the balance between honesty and compassion is something that must be periodically re-explored as cases continue to occur in which it appears that one side of the communication equation appears to fail from time to time. The emotional distress felt in patients and families who perceive themselves as victims of poor communication can place considerable demands on the healthcare system, as it must respond to the patient or family’s requests, questions, and concerns stemming from poor communication.^6,17 Each failure experience should spur those involved to explore again their methods and processes so that they can further fine-tune them in anticipation of future cases within the domain of end-of-life care.

A REVIEW OF THE LITERATURE

A review of the academic literature on communicating bad news reveals many guidelines and recommendations for physicians.^18-21 Certain guidelines are evidence-based,^22,23 while others rely on clinical anecdotes, clever mnemonics,²⁴ and recommendations from expert physicians.^21,25 Only a handful of studies exist that have reported the results of delivering bad news to a patient.^26,27 The general tone and message of many of these articles remains the same: Prepare in advance, communicate well (refrain from using medical jargon), encourage and validate emotions, be empathetic, sympathetic, compassionate, and arrange a follow-up. It is questioned, then, if there is a reasonably robust literature on the subject, why do cases still emerge where the patient, family, or caregivers: (1) appear or claim to be unaware of the true diagnosis or prognosis; or (2) feel misinformed, misled, or “kept in the dark” on the nature of the treatments, illness, or condition; or (3) feel that they have been treated in an unsympathetic or unsupported manner?

Of the essential elements in a good standard of clinical practice, effective communication is sometimes missing. A well-balanced skill such as the ability to break bad news takes time to learn, and is not a result of innate abilities only. This issue has definitely been raised in the past,¹⁶ as efforts have been made to incorporate breaking bad news education into the medical school classroom and in postgraduate training programs.^28-31 To improve its effectiveness, this initiative has also made use of technologies such as video recording with feedback.^16,28 It is worth reviewing the processes involved to determine what might be missing, and to explore approaches each physician experiences with new cases.

Various published guidelines have effectively been used to assist healthcare providers in the development of communication skills and capabilities, especially in oncology. One of these is the SPIKES approach,²¹ which stands for Setting up, Perception, Invitation, Knowledge, Emotions, Strategy and summary, which is reasonably likely to meet expectations for patients for bad news disclosure^15,32 (Table). Conceptually, the SPIKES approach seems to have a great deal of merit and effectiveness. There is some debate about the validity of published guidelines in breaking bad news.³³ Guidelines are meant to act as a conceptual starting point for physicians,³⁴ as the process of communication is unique to each interaction, and cannot accurately be summed up in any linear guideline. Nonetheless, as a foundation for discussion we can review the steps contained in SPIKES while expanding on some of the issues and challenges it presents.

Setting Up and Preparing Mentally rehearsing the meeting prior to its onset may be helpful in relieving some anxiety, especially if the physician has difficulty in communicating bad news scenarios. With this in mind, it’s important that the physician examine the broader picture and identify a goal or end to be reached. Furthermore, the physician must determine a figurative “roadmap” in order to determine the path the discussion will follow. If the physician feels unprepared, he or she can speak with a colleague or a member of the healthcare team on how best to approach the patient, family, or situation.³⁵ In addition, the physician can and should review existing charts or referrals made on the patient. By better knowing the patient’s history and all of the pertinent findings and recommendations from other physicians, for example, the physician can better anticipate a family’s concerns and other issues.

Unfortunately, situations often do not follow as mentally rehearsed, and many things can occur that shift the direction or nature of the communication: unexpected patient or family reactions, possible unaccounted interruptions, or the physician not being adequately prepared or knowledgeable about some components of the course of events. Furthermore, setting time aside for an interview or meeting can be helpful, but not always possible. If the patient is not bedridden, discussions should be held in a quiet “family” room or an area that will reduce the risk of being disturbed. Aside from devoting time, which signals care and concern to the patient and family, this provides confidential, dignified, and respective sharing of information and emotional support. Given these considerations, a recent critique of guidelines concerning bad news suggest that “physicians prepare for all interactions in which they will disclose any information, from the most momentous to the most trivial, by engaging in communication behaviors appropriate for delivering potentially stressful information.”³³

Patient’s Perception and Perspective It is patients and families who are directly influenced by bad news, and for this reason it is especially significant to appreciate their perspective. It further verifies the perception that the physician acknowledges their autonomy. It is most likely here, at the point of assessing the patient’s perception, where lines of communication could potentially begin to blur. While it is important to assess the level of comprehension the patient and/or family have around the illness, in order to assess the appropriate language use and message, an inaccurate assessment could result in confused messages or interpretations. Although using open-ended questions can help in the assessment process, the practice of self-report may not accurately reflect the patient’s level of understanding. As physician-patient interactions can be stressful, especially when it is known that the patient is in fact “sick” or is awaiting test results, individuals may not fully disclose their own understanding of their condition.

Additionally, if the patient or surrogate decision maker is a professional, or more notably a healthcare professional, it could be wrongly assumed that he or she is fully aware of all aspects of the treatment options, medical language, outcomes, and prognoses. Important information may be mistakenly “omitted” in conversation on the basis of assumed prior knowledge. Furthermore, during times of high intensity and stress, it cannot be expected that the patient or surrogate would be in an adequately receptive mental state to thoroughly process the prognosticating information. Sensing this, and due to the possibility of a clinician’s excessively beneficent manner that can come across as a paternalistic, patients or family members may not necessarily request further explanation or elucidation because of how they think they will be perceived by the physician. For example, a patient may be embarrassed by asking basic questions. Interestingly enough, over the past several decades, this paternalistic paradigm has been modified significantly by the inclusion of a model that emphasizes patient autonomy³⁶ and more “relationship-centered” practice.³⁷ However, autonomy does not mean only providing the facts or a “menu” of treatment options, but must be couched with respect, support, and understanding.

Invitation to Receive Information It is important to allow an opportunity for the patient to explicitly state how he or she would like to receive the information,^21,26 and in how much detail. If and when the patient wants a brief “overview” of a condition “without going into too much detail,” at what point is enough information given to satisfy the patient’s inquiries such that no confusion will arise? Although it cannot be guaranteed that a patient or family is truly ever satisfactorily informed, not giving precise details presents a potential obstacle in adequate comprehension of what is being communicated. In this scenario, then, the physician’s skill as a communicator and reader of social cues is paramount in accurately judging the patient’s invitation. Additionally, guidelines such as SPIKES advocate determining the method for the disclosure of the medical information in advance in order to facilitate ensuing interactions.²¹

Knowledge and Information Transfer With regard to the case described above, there was an apparent knowledge and information transfer deficit in the first communication exchange between the physician in the nursing home and the family. While the physician wanted to be supportive to the patient and family, and wanted to be sensitive to their needs, she apparently did not adequately accomplish this goal because she wasn’t specific enough about the nature of the illness, and was excessively vague about the prognosis.

Guidelines such as SPIKES argue against the use of “excessive bluntness,” as it may cause further anger and alienation.²¹ The issue here, however, is that being “excessively blunt” is an immeasurable feature that is highly dependent on the perception of the individual. Moreover, some patients may actually benefit from a blunt dispassionate statement such as, “Your cancer has spread, and without a new round of chemotherapy, your life expectancy will probably be less than 6 months.” While not an ideal or preferred method,11 this unfortunately may be what is required for the patient or surrogate decision maker to fully absorb the information without any chance for confusion. However, even the bluntest or frankest of information can be accompanied by hope, even in the form of doing everything possible to address and relieve symptoms of pain and suffering. Whenever possible, it is vital to accompany a bad prognosis with some discussion of care that will focus on the commitment to quality of life and adequate treatment of symptoms to ameliorate suffering.

Legally, physicians cannot withhold information from patients, even if they believe it will have an adverse impact on well-being. If one reveals information in absence of sensitivity, or avoids one’s professional duty to aid and support the patient in his or her treatment choices, the patient may have an emotional response similar to that of feeling deceived.^21,38

The notion of reasonably complete disclosure, with the emphasis on truth-telling, is a secular, Western approach to care. In many cultures, such as Russian, various East Asian, and others, a belief exists that communicating or verbalizing bad news, even when done compassionately, comes with adverse consequences.³⁹ Furthermore, within the existing published guidelines there are those that address cross-cultural issues.^40,41 These concerns must be understood by healthcare professionals who work in culturally diverse environments.

Acknowledging and Validating Emotions with Empathy Empathy, or “reflective understanding,” facilitates the bonding of trust and reassures patients of physicians’ genuine concern for their well being. This softens the impact of bad news and permits moving forward to discussing strategies that address the disease and its implications.

It is extremely difficult to accurately predict how a patient will react to bad news. If the physician does not intrinsically possess strong interpersonal skills when responding empathetically to a patient’s emotional response, the process can be extremely daunting.^1,16,42 Depending on the nature of the physician-patient relationship, it would be assumed that the steps outlined here should be tailored according to their expressed needs. Regardless of the steps and initiatives taken to provide a compassionate, clear, and empathetic bad news delivery, the shock or impact of the emotional response is nearly impossible to predict.

Strategy and Summary It is crucially important to constantly reaffirm that the patient and family possess proper comprehension of the implications of their diagnosis and prognosis during discussion about a serious and likely fatal illness. This can help prevent underestimating the efficacy or the confounding treatment goals and intentions.⁴³ It also enables appropriate and realistic planning of treatment options, which may range from aggressive and potentially curative therapies to strictly palliative and comfort measures, with less resistance to an acceptance by the patient and family of the proposed treatment strategies. Withholding or masking important prognostic information weakens the physician-patient relationship, especially when this information becomes a key element in ethical end-of-life decision making. It further compromises the ability of both parties to make the most well-informed choices with regard to care.¹

CONCLUSION

Breaking bad news is both an extremely stressful and difficult task to undertake for physicians and other health-care professionals, and difficult to accept for patients and their loved ones. It is apparent that for an effective interaction to occur, a combination of best practice in all domains must be achieved, with specific sensitivity given to the patient’s and family’s needs and requests.

Clinicians must be cognizant that patient preferences may change over time. This bestows importance on the development of a relationship between physician and patient, such that the physician is well aware of the patient’s needs and is able to tailor the process of breaking bad news to the patient about his or her condition. While it is recognized that physicians may find themselves in situations where they are unable to develop a healthy therapeutic relationship, in general it is understood that the most recent claim or statement made by the individual while competent is the one that takes precedence over any previously expressed wishes.

What is “missing” in bad news communication, though a question of great intellectual curiosity, is one that may never be answered due to the uniqueness of each patient, family, physician, circumstance, and interaction. This does not mean that it is a question that should be ignored as cases such as the one presented above continue to arise. Empirical research can further develop guidelines and suggestions for best practice, especially in end-of-life and palliative care, while bad news instruction can be improved in both medical schools and other health-related fields such as social work and nursing. This will dually facilitate the process of improving the giving of bad news by the physician while improving the quality of care for patients and their families.

The authors report no relevant financial relationships.