What Do You Say to a Dying Patient?

Lack of formal training, professional biases, cultural differences, and other factors can influence how physicians deliver bad news to patients. An expert offers some guidance on what to do -- and what not to do.

This article was originally published on HCPLive.com.

Delivering bad news to patients is often one of the most difficult things about being a physician, said Jerry Old, MD, FAAFP, during his presentation, “Communicating Bad News: The Hospice Conversation,” Saturday at the 2010 AAFP Scientific Assembly. Old said that this is due to several factors, but the main reason is that most physicians receive little-to-no formal training in the communications skills employed when presenting bad news to patients.

This is a problem, said Old, because “without confidence in their ability to effectively do so, the discomfort and uncertainty of delivering bad news may lead clinicians to emotionally disengage from patients.” Knowing the patient “as an individual and as a human being” is “a critical factor in assessing how the bad news will be conveyed,” Old said. And family physicians and other primary care physicians, perhaps more so than practitioners in any other specialty, are in a unique position to do this.

There is a growing body of evidence that not only do the attitude and communication skills of the deliverer of bad news have an effect on how well the patient accepts and copes with the bad news, but the way in which bad news is delivered has an impact on the grieving process of the patients and the family. “And you only get one chance to get it right,” Old said.

In addition to the lack of formal training in this area, Old said that there are several other reasons why breaking bad news to patients is so difficult (whether informing a patient about a terminal diagnosis or poor prognosis or informing friends or family members that their loved one has died). Physician biases pay an important role — the feeling that the physician has somehow “failed” the patient can make communicating bad news especially difficult. Physicians may also wish to avoid “taking away the patient’s hope;” which is often used as justification for withholding bad news, Old said. Physicians may also fear the patient’s or family’s reactions to bad news. Another key factor may be the profession’s historical bias toward being cheerful and positive when dealing with patients.

A Change in Attitudes

However, as the old, paternalistic model of health care is fading away and being replaced by an emphasis on patient empowerment and autonomy, these reasons for justifying withholding bad news from patients are being challenged by the reality that a great majority of patients (up to 90% in some studies) want full and frank disclosure of their diagnosis and prognosis. This means that “a physician’s ability to frankly discuss bad news and plan with patients and families is as important as any other medical intervention,” Old said.

Just as there are many factors that affect a physician’s ability and willingness to effectively deliver bad news to patients, so too are there many factors and considerations that determine what (or even whether) a patient prefers to know about a poor prognosis, the manner in which he or she desires to learn the information, and how he or she will respond to it. Old reviewed several key components that may inform this dynamic:

The patient’s ethnic and cultural background can have a major impact on this process. Old noted that “cultural factors strongly influence patient’s reactions concerning serious illness and decisions about end-of-life care.” He suggested that one way physicians can develop the necessary rapport with ethnically diverse patients is simply by demonstrating an interest in their cultural heritage. “Go ahead and ask them; many patients want to talk about their beliefs and culture and share their outlook with their physician,” Old said.

The patient’s “psychosocial context.” A patient’s response to bad news from his or her physician can be influenced by many other life considerations and priorities and how they will be affected by these new medical developments. It may be an “inopportune time” to receive this news (ie, the patient may have an important family or social event that will be disrupted). The poor prognosis or diagnosis may have adverse consequences for the patient’s career or cherished hobbies and interests. Old said that a patient who has a friend or family member who received similar news and experienced a negative outcome may view what you are telling them as “a loaded diagnosis” and assume the worst. Clinicians should never forget that “bad news is filtered through where patients live,” Old said.

What Works?Old said that one study found that patients and family members judged the attitude of messenger, the clarity of the message delivered, the clinician’s attention to the patient’s privacy, and the ability of the messenger to answer questions to be the most important features of communicating bad news. Another study found that most patients do not want news sugarcoated or delayed. Old reminded the audience to “know their practice.” Although some studies have shown that touching, hugs, or other physical contact is unimportant to patients when receiving bad news from physicians, other studies have shown that patients value clinicians’ expressions of concern and sympathy. “Again, you only get one chance to do this. If handled poorly, it can leave survivors with a lifetime of bitter memories,” Old said. When delivering bad news to patients and their family, remember the following:

Preparation Is the Key. “You have to know the medical facts about the patient’s condition, know the prognosis and treatment options, and be prepared to answer questions” Old said.

Be Aware of the Physical Setting. Deliver the news in a private, comfortable, quiet place. Sit down and face the patient. Turn off your cell phone. Ask the patient whether they want specific family members to be present when the news is delivered. Clarify the relationships these people have with the patient. Make sure the legal decision maker is present if the patient is not cognitive.

What to Say and How to Say It. Before presenting any bad news, give the patient a brief overview/recap of his or her case. Make sure to determine if the patient and family can understand the information you are conveying. “Make no assumptions,” Old said. Ask the patient what other doctors may have told them and what the patient understands about his or her condition. Old said that clinicians should “speak slowly, deliberately, and clearly,” and “check reception frequently by asking ‘Do you understand what I’ve said?’” Old advised the audience to give their patients “fair warning” rather than launch directly into their delivery. “Tell them ‘I’m afraid I have bad news,’ and pause before continuing,” he said. Then, present the bad news in a direct and succinct manner. Use lay terms and easy-to-follow language so that there is no misunderstanding. Avoid the use of medical jargon.

What to Do Next. After delivering the news, “sit quietly and wait as long as it takes; wait until the patient responds and then take your cues from them. Avoid the temptation to talk to overcome your own discomfort,” Old advised. If there is no response from the patient after a prolonged silence, ask patient how they feel. Be ready for a range of emotions (anger, sadness, disbelief, etc). Be aware of the cognitive coping strategies commonly used by patients (denial, blame, disbelief, intellectualization, acceptance). Above all else, Old said to listen to the patient. Give the patient an opportunity to ask questions. Provide information at the patient’s pace; don’t overwhelm them with details.

What Not to Do. Do not argue with the patient. Don’t criticize a colleague’s medical care. When assessing the patient’s options, give them realistic hope, not false hope. While it’s ok to validate and normalize the patient’s emotional response to the news you have just delivered, Old told the audience that under no circumstances should they say something like “I know how you feel” unless it is the absolute, honest truth. Patients will see through insincerity. He said that it’s better to say “I don’t know” or “I don’t know what to say” than to risk alienating the patient with a falsehood.

Next StepsAt the end of the conversation, ask the patient to tell you his or her understanding of what you just told them. Old said that “they probably won’t remember many details after hearing the bad news, so you should agree on a specific follow-up plan.” Assess the patient for thoughts of self-harm and continue to assess for despondency or suicidal ideation on future visits. During follow-up, discuss goal setting and explore the patient’s emotional and spiritual needs. Use intermediary services such as hospice, but “avoid using them as a reason or excuse to disengage from the patient,” Old said. Never say “There’s nothing more we can do.”

He also told the audience that it is important to initiate a conversation about palliative care and/or hospice early in the course of the patient’s disease or condition while he or she still feels well enough to make rational decisions. Surveys have shown that many patients wish this topic had been brought up earlier in their care. Old said that far from somehow hastening a patient’s death (as was once thought by many patients and providers), studies have shown that patients on hospice live longer than patients who continue aggressive therapy. When talking to patients about hospice, he advised physicians to explore what’s important to the patient by asking them questions like “What do you expect in the future?” and “What goals do you have for the time you have left?” If there is a large gap between what the patient expects and what the physician expects, the physician should take the opportunity to clarify the patient’s understanding of his or her prognosis.

Old concluded by reminding the physicians in the audience that “despite the challenges involved, physicians can find tremendous gratification in providing a therapeutic presence during a patient’s greatest time of need.”