Communication Along the Disease Trajectory
Basic Communication Skills
Communication with the patient and family entails a number of essential skills, which can be remembered as five E’s:
- Engaging the patient.
- Eliciting the patient’s understanding/current concerns.
- Educating the patient.
- Addressing Emotions.
- Enlisting the collaboration of the patient and caregiver.
These skills serve the purpose of developing rapport; establishing patient understanding of their condition and important concerns; providing information about the illness and treatment; responding to emotions using empathic, validating, and clarifying responses; and enlisting the patient and family in the treatment plan. An online lecture titled “Communication and Interpersonal Skills in Cancer Care” further explains these basic skills and may be found on the Web site of the International Psycho-Oncology Society.
The application of basic communication skills to a number of oncologic challenges—including breaking bad news, shared decision making, and dealing with depression and challenging patients—has been outlined.
Clinicians should remember that many patients are anxious about medical visits. Putting patients at ease will allow better assimilation of information; and the skills of inquiring about the patient’s point of view, listening without interrupting, and being empathic will be perceived as supportive and caring. As one study  found, the first few moments of the interaction are especially important in forming lasting impressions; a friendly handshake and making eye contact are important first steps in creating trust and rapport. Sitting down puts the health care provider at patient eye level and invites discussion rather than one-way conversation; asking the names and relationships of others in the room acknowledges their potential role as allies in the care of the patient. Inquiring briefly about the patient’s hometown, family, or other personal aspects of life helps shift the focus from patienthood to personhood. Not interrupting while patients are talking and acknowledging the importance of their concerns conveys respect for their point of view.Breaking Bad News
Giving bad news is a frequent and significant communication challenge for oncologists. Moreover, a typical oncologist in practice may give bad news thousands of times over the course of a career. Increased cancer survival now means not only that information regarding the state of the disease and its response to a multitude of treatments over time must be communicated effectively to the patient, but also that adverse information related to irreversible and potentially irreversible side effects, complications of the illness, and the treatment and diminished prospects for the future must be disclosed. This process is made difficult by several factors. Oncologists are rarely trained in techniques for giving bad news.[4,5] Physicians often experience negative emotions such as anxiety and fear of being blamed when they must tell patients that treatment has not worked.[6,7] There is thus the danger that physicians may react to patient emotions by offering false hope or premature reassurance, or they may omit important information from the disclosure. Moreover, patients may process information through a repertoire of coping strategies or styles called denial or blunting, which may include avoiding asking questions, being overly optimistic about the outcome, and distorting information to put it in a better light.Diagnostic Disclosure and Discussions About Prognosis
When there was little in the way of effective anticancer treatment, physicians shied away from disclosing the cancer diagnosis for fear it would send a patient into a mental tailspin.[Level of evidence: II] Disclosure of a cancer diagnosis progressed from the physician-centered paternalistic approach to doctor-patient communication in the 1950s and 1960s, to full disclosure by the late 1970s. Improved treatment modalities, changing societal attitudes and, in the United States, legislation enforcing the patient’s right to informed decision making drove physician-patient communication in a more open or disclosing direction. Consequently, today in North America and many Western countries, there is total open disclosure regarding the presence of cancer, though physicians frequently do not discuss the prognosis unless a patient asks. The reluctance to truthfully disclose a terminal prognosis persists in southern Europe, including Italy and Spain. For patients, however, not discussing the diagnosis may engender feelings of isolation, anxiety, lack of autonomy or control, psychological abandonment, mistrust, suspicion, and a sense of betrayal. On the other hand, open discussion of the diagnosis decreases uncertainty, improves participation in decisions about care, allows access to psychological support, encourages self-care, and allows the patient to begin planning for the future.
Although honest disclosure can have a negative emotional impact in the short term, most patients will adjust well over time. Gratitude and peace of mind, positive attitudes, reduced anxiety, and better adjustment are some of the benefits that patients report from having been told about a diagnosis of cancer. Because uncertainty is a major cause of emotional distress for patients, relief from uncertainty can, in itself, be therapeutic; some believe that over time, patients achieve a psychosocial objective correlative of order within the context of chaos theory. When bad news is given tactfully, honestly, and in a supportive fashion, the patient’s experience of the conversation is less stressful. Not being told about the severity of their condition or not having the opportunity to express their fears and concerns may lead patients to believe that nothing can be done to help them or may prevent them from understanding their disease.;[Level of evidence: II] On the other hand, a patient who is told bad news bluntly by a practitioner who is trying to quickly complete the difficult task of sharing bad news will likely feel extremely frightened and unsupported. Being told that there is nothing more to be done can engender feelings of abandonment. One study [Level of evidence: II] surveyed 497 cancer patients regarding their experiences receiving their cancer diagnoses. Significant predictors of patient satisfaction with the conversation included perceiving the physician as personally interested, being able to understand the information given, being informed in the proper environment (doctor’s office), and having more time invested in discussing the information. Although most patients wish to have complete and accurate information regarding their condition, many patients feel that the news is forced upon them unless their right to have the news given according to their preferences is acknowledged by the physician (e.g., “Are you someone who wants to know all the details about your condition?”).
A study [Level of evidence: II] of 351 patients who had a variety of cancers at different stages and who were seen at M.D. Anderson Cancer Center elicited patient communication preferences when they were given bad news of the initial cancer diagnosis or recurrence. The highest rated elements included the following:
- The doctor being up-to-date on the latest research on the patient’s cancer.
- The doctor informing the patient about the best treatment options and taking time to answer all patient questions.
- The doctor being honest about the severity of the condition.
- The doctor using simple and clear language, giving the news directly, and giving full attention to the patient.
Differences were noted in patient preferences based on sex, age, and level of education, underscoring the importance of tailoring the discussion to the individual patient. Cancer type did not predict patient preferences. It is important for a physician to elicit patient perspective on his or her condition because many incorrect beliefs can be clarified for the patient’s benefit.
One protocol or method of disclosing bad news is represented by the acronym SPIKES, an approach that comprises the following six steps:
- S—Setting up the interview (choosing the right location, establishing rapport).
- P—Assessing the patient’s Perception of the medical situation.
- I—Obtaining the patient’s Invitation (asking the patient’s permission to explain).
- K—Giving Knowledge and information to the patient.
- E—Addressing the patient’s Emotions with empathic responses (addressing emotions that might occur during bad news disclosure and strategizing a treatment plan).
- S—Strategy and Summary (summarizing the plan for the patient and family).
The SPIKES method is useful because it is short, is easily understandable, and focuses on specific skills that can be practiced. Moreover, this protocol can be applied to most situations of breaking bad news, including diagnosis, recurrence, transition to palliative care, and even error disclosure. This method also includes reflective suggestions for physicians on how to deal with their own distress in being the messenger of bad news. In an innovative qualitative study focused on communicating bad news related to cancer recurrence, patients with diagnoses of gastrointestinal cancers during the previous 2 years listened to audio recordings of oncologists using the SPIKES approach (with standardized actors) and then identified what they liked and disliked about the communications. Three major themes were identified:
- Recognition, which involved the physician acknowledging or reflecting the patient’s emotional response, without becoming overly emotional or offering platitudes.
- Guidance, which referred to the physician remaining in charge of the dialogue, pointing out the patient’s strengths and offering positive recommendations.
- Responsiveness, which involved the physician moving back and forth between providing “recognition” and providing “guidance,” using an interacting, rather than lecturing, style.
Patients consistently noted that they did not like the physician beginning the communication of bad news with words such as “unfortunately.”
Whereas most physicians in Western countries tell their patients that they have cancer, information about prognosis is less commonly presented. Most cancer patients report that prognostic information is of great importance to them. If patients are actively encouraged to ask questions, prognosis is the one area in which they desire information and actually increase their question-asking. In one study,[Level of evidence: II] prognostic information that was rated as most important by women with early-stage breast cancer included knowing the probability of cure, disease stage, and chance of curative treatment and receiving 10-year survival figures comparing receipt and nonreceipt of adjuvant therapy. Probability of cure and knowledge of disease stage were also identified as high-priority needs in another study of women with early-stage breast cancer.[Level of evidence: II] However, patients clearly vary in their desire for prognostic information, and patients with more advanced cancer may be less inclined to receive information about their life expectancy; many others may be ambivalent. It has also been shown that physicians and their patients who have advanced cancers often overestimate the probability of survival. Thus, there is considerable controversy about how to discuss prognosis with patients; a number of articles have made valuable suggestions.[24-28]Transition to Palliation and End-of-life Care
Communicating with dying patients can be complicated by practitioners’ own reactions such as anxiety, sadness, and frustration, combined with the historic tendency in Western medicine to focus on cure. The data from one study suggest additional reasons. Physicians strive to achieve a delicate balance between providing honest information and doing so in a sensitive way that does not discourage hope. Physicians may fear that the revelation of a grim prognosis may psychologically damage patients’ hopes and may diminish their will to survive through a form of prophecy. This fear is consistent with a Western cultural assumption that one needs hope to battle cancer. Physicians are also uncomfortable with putting odds on longevity, recurrence, and cure because they do not know when or how individual patients will die. In one study,[Level of evidence: II] hope was a constant theme of the respondents. However, many patients do not measure hope solely in terms of cure, but hope may represent achieving goals, having family and oncologist support, and receiving the best treatment available.[30,31]
The value of end-of-life discussions is not solely psychological. In addition, aiding patients with end-of-life discussions through this kind of communication has an impact on health care costs. In a large study of people with advanced cancer, patients who reported having end-of-life discussions with their physicians (n = 188) had significantly lower health care costs than did patients who did not have these discussions (n = 415). This was demonstrated by a reduction in resuscitation, ventilator use, and intensive care stay. There was no difference either in survival time or in the likelihood of receiving chemotherapy for patients who discussed end-of-life preferences with physicians (n = 75) and those who did not (n = 70). Higher costs were associated with worse quality of life at death, as rated by the patient's caregiver (hospice nurse or family member).[Level of evidence: II]
Patients facing death have myriad concerns that include leaving children and other loved ones behind; decline in the socially based aspects of one’s identity; the end of being able to fulfill normal roles; fear of burdening loved ones; loss of control; deterioration in personal appearance; needing help with intimate personal care and routine activities of daily living; worries about mental awareness; pain and management of symptoms; quality of life; dignity; achieving a sense of completion; having a good death; and abandonment. During transitions, patients want their oncologists to provide biomedical information, show that they care about them as individuals, and balance hope with realism. One study  identifies several communication strategies to accomplish this, including “ask-tell-ask” and “hope for the best, prepare for the worst.” A number of patients are grateful for the opportunity to talk about questions of death, though they often have few opportunities because many patients find that the medical staff is afraid of or uncomfortable with talking about death and dying, which exacerbates feelings of isolation and separation.
Saying goodbye to patients is an area discussed in an article that provides practical suggestions for communicating with the patient at the end of life. The authors suggest that saying goodbye is an important way for the oncologist to achieve closure with the patient by acknowledging the importance of the relationship and expressing appreciation to the patient.Strategies for Breaking Bad News
When existential concerns are translated to the clinical setting, the optimal method of breaking bad news becomes a primary concern. Breaking bad news abruptly has been found to increase its negative impact. Patients also report particularly negative reactions as a result of the following circumstances:
- News delivered over the telephone or in the recovery room.
- Doctors withholding information.
- Clinicians’ failure to provide information about the availability of additional help.
- Information given bluntly and factually (e.g., “You have a terminal cancer and you have 6 months to live”).
Patients also report that letters and tapes of the bad news consultation are helpful and may increase their level of satisfaction with and retention of the information provided.
One survey found that most physicians do not have a consistent plan or strategy for breaking bad news to their patients. Among a sample of physicians who attended an annual meeting of the American Society of Clinical Oncology, 22% reported that they did not have a consistent approach to the task of breaking bad news to patients, and 51.9% reported that they had several techniques or tactics but did not have an overall plan. Determining what patients believe to be important in the interaction may help refine the current guidelines and yield specific, evidence-based recommendations for facing this challenging task.
Some general guidelines and recommendations for how bad news interviews should be conducted have been published.[4,19,41-43] However, these recommendations have usually taken the form of practical advice formulated on the basis of anecdotal experiences or opinions with little empirical foundation. For example, in one review of more than 300 articles from the published literature between 1973 and 1993, only 23.2% of authors reported descriptive data on breaking bad news, and almost two thirds were opinions, reviews, letters, case reports, or non–data-based descriptive studies. Although there are some subtle differences between approaches recommended for giving bad news, there are also many common elements. For example, each of the strategies referenced above recommends giving the news in an appropriate setting (quiet place, with uninterrupted time), assessing the patient’s understanding of their illness, providing the information the patient wants, allowing the patient to express emotions and responding appropriately, summarizing the information provided, and coming up with a plan for the next step(s). Additional research is needed to empirically support these techniques.
Research also suggests that the structure and content of the consultation influences the patient's ability to remember what has been said in the following ways:
- Patients usually recall facts provided at the start of a consultation more readily than those given later.
- Topics deemed most relevant and important to the patient (which might not be those considered most pertinent to the doctor) are recalled most accurately.
- The larger the number of statements made by a doctor, the smaller the mean percentage recalled by the patient.
- Items that patients manage to recall do not decay over time, as do other memories.
- Baile WF, Aaron J: Patient-physician communication in oncology: past, present, and future. Curr Opin Oncol 17 (4): 331-5, 2005. [PUBMED Abstract]
- Lee SJ, Back AL, Block SD, et al.: Enhancing physician-patient communication. Hematology Am Soc Hematol Educ Program : 464-83, 2002. [PUBMED Abstract]
- Frankel RM, Stein T: Getting the most out of the clinical encounter: the four habits model. J Med Pract Manage 16 (4): 184-91, 2001 Jan-Feb. [PUBMED Abstract]
- Baile WF, Buckman R, Lenzi R, et al.: SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 5 (4): 302-11, 2000. [PUBMED Abstract]
- Hietanen P, Aro AR, Holli K, et al.: Information and communication in the context of a clinical trial. Eur J Cancer 36 (16): 2096-104, 2000. [PUBMED Abstract]
- Buckman R: Communications and emotions. BMJ 325 (7366): 672, 2002. [PUBMED Abstract]
- Wallace JA, Hlubocky FJ, Daugherty CK: Emotional responses of oncologists when disclosing prognostic information to patients with terminal disease: results of qualitative data from a mailed survey to ASCO members. [Abstract] J Clin Oncol 24 (Suppl 18): A-8520, 2006.
- Maguire P: Improving communication with cancer patients. Eur J Cancer 35 (10): 1415-22, 1999. [PUBMED Abstract]
- Miller SM: Monitoring and blunting: validation of a questionnaire to assess styles of information seeking under threat. J Pers Soc Psychol 52 (2): 345-53, 1987. [PUBMED Abstract]
- Novack DH, Plumer R, Smith RL, et al.: Changes in physicians' attitudes toward telling the cancer patient. JAMA 241 (9): 897-900, 1979. [PUBMED Abstract]
- Gordon EJ, Daugherty CK: 'Hitting you over the head': oncologists' disclosure of prognosis to advanced cancer patients. Bioethics 17 (2): 142-68, 2003. [PUBMED Abstract]
- Arber A, Gallagher A: Breaking bad news revisited: the push for negotiated disclosure and changing practice implications. Int J Palliat Nurs 9 (4): 166-72, 2003. [PUBMED Abstract]
- Mitchell JL: Cross-cultural issues in the disclosure of cancer. Cancer Pract 6 (3): 153-60, 1998 May-Jun. [PUBMED Abstract]
- Girgis A, Sanson-Fisher RW: Breaking bad news. 1: Current best advice for clinicians. Behav Med 24 (2): 53-9, 1998. [PUBMED Abstract]
- Mishel MH: Reconceptualization of the uncertainty in illness theory. Image J Nurs Sch 22 (4): 256-62, 1990. [PUBMED Abstract]
- Fallowfield L, Jenkins V: Effective communication skills are the key to good cancer care. Eur J Cancer 35 (11): 1592-7, 1999. [PUBMED Abstract]
- Friedrichsen MJ, Strang PM, Carlsson ME: Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment. Palliat Med 16 (4): 323-30, 2002. [PUBMED Abstract]
- Loge JH, Kaasa S, Hytten K: Disclosing the cancer diagnosis: the patients' experiences. Eur J Cancer 33 (6): 878-82, 1997. [PUBMED Abstract]
- Parker PA, Baile WF, de Moor C, et al.: Breaking bad news about cancer: patients' preferences for communication. J Clin Oncol 19 (7): 2049-56, 2001. [PUBMED Abstract]
- Back AL, Trinidad SB, Hopley EK, et al.: What patients value when oncologists give news of cancer recurrence: commentary on specific moments in audio-recorded conversations. Oncologist 16 (3): 342-50, 2011. [PUBMED Abstract]
- Butow PN, Dowsett S, Hagerty R, et al.: Communicating prognosis to patients with metastatic disease: what do they really want to know? Support Care Cancer 10 (2): 161-8, 2002. [PUBMED Abstract]
- Lobb EA, Butow PN, Kenny DT, et al.: Communicating prognosis in early breast cancer: do women understand the language used? Med J Aust 171 (6): 290-4, 1999. [PUBMED Abstract]
- Degner LF, Kristjanson LJ, Bowman D, et al.: Information needs and decisional preferences in women with breast cancer. JAMA 277 (18): 1485-92, 1997. [PUBMED Abstract]
- Helft PR: Necessary collusion: prognostic communication with advanced cancer patients. J Clin Oncol 23 (13): 3146-50, 2005. [PUBMED Abstract]
- Back AL, Arnold RM: Discussing prognosis: "how much do you want to know?" talking to patients who are prepared for explicit information. J Clin Oncol 24 (25): 4209-13, 2006. [PUBMED Abstract]
- Back AL, Arnold RM: Discussing prognosis: "how much do you want to know?" talking to patients who do not want information or who are ambivalent. J Clin Oncol 24 (25): 4214-7, 2006. [PUBMED Abstract]
- Back AL, Arnold RM, Quill TE: Hope for the best, and prepare for the worst. Ann Intern Med 138 (5): 439-43, 2003. [PUBMED Abstract]
- Dowsett SM, Saul JL, Butow PN, et al.: Communication styles in the cancer consultation: preferences for a patient-centred approach. Psychooncology 9 (2): 147-56, 2000 Mar-Apr. [PUBMED Abstract]
- Ellis PM, Tattersall MH: How should doctors communicate the diagnosis of cancer to patients? Ann Med 31 (5): 336-41, 1999. [PUBMED Abstract]
- Sardell AN, Trierweiler SJ: Disclosing the cancer diagnosis. Procedures that influence patient hopefulness. Cancer 72 (11): 3355-65, 1993. [PUBMED Abstract]
- Adelbratt S, Strang P: Death anxiety in brain tumour patients and their spouses. Palliat Med 14 (6): 499-507, 2000. [PUBMED Abstract]
- Zhang B, Wright AA, Huskamp HA, et al.: Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med 169 (5): 480-8, 2009. [PUBMED Abstract]
- Byock IR: The nature of suffering and the nature of opportunity at the end of life. Clin Geriatr Med 12 (2): 237-52, 1996. [PUBMED Abstract]
- Singer PA, Martin DK, Kelner M: Quality end-of-life care: patients' perspectives. JAMA 281 (2): 163-8, 1999. [PUBMED Abstract]
- Steinhauser KE, Christakis NA, Clipp EC, et al.: Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284 (19): 2476-82, 2000. [PUBMED Abstract]
- Chochinov HM, Hack T, Hassard T, et al.: Dignity in the terminally ill: a cross-sectional, cohort study. Lancet 360 (9350): 2026-30, 2002 Dec 21-28. [PUBMED Abstract]
- Evans WG, Tulsky JA, Back AL, et al.: Communication at times of transitions: how to help patients cope with loss and re-define hope. Cancer J 12 (5): 417-24, 2006 Sep-Oct. [PUBMED Abstract]
- Back AL, Arnold RM, Tulsky JA, et al.: On saying goodbye: acknowledging the end of the patient-physician relationship with patients who are near death. Ann Intern Med 142 (8): 682-5, 2005. [PUBMED Abstract]
- Girgis A, Sanson-Fisher RW: Breaking bad news: consensus guidelines for medical practitioners. J Clin Oncol 13 (9): 2449-56, 1995. [PUBMED Abstract]
- Bedell SE, Graboys TB, Bedell E, et al.: Words that harm, words that heal. Arch Intern Med 164 (13): 1365-8, 2004. [PUBMED Abstract]
- Fallowfield LJ, Jenkins VA, Beveridge HA: Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med 16 (4): 297-303, 2002. [PUBMED Abstract]
- Loge JH, Kaasa S: [Occurrence and diagnosis of psychiatric conditions in palliative medicine] Tidsskr Nor Laegeforen 120 (27): 3275-9, 2000. [PUBMED Abstract]
- Buckman R: How to Break Bad News: A Guide for Health Care Professionals. Baltimore, Md: Johns Hopkins University Press, 1992.