Case 1.1   Communicating about a Progressive Diagnosis and Prognosis

Julia A. Walch

    HISTORY

Thomas was an 88-year-old African-American man who was admitted to the hospital for the third time in a month via the Emergency Department with fever and difficulty breathing; the admission diagnosis was urinary tract infection. He was discharged from the hospital just two days prior to the most recent admission after a prolonged hospitalization for health-care-acquired pneumonia which required intensive care and a short course of mechanical ventilation. He made slow but steady clinical improvements with the exception of his appetite, which remained poor. A percutaneous endoscopic gastrostomy (PEG) tube was being considered by the attending physician. Prior to recent admissions the patient had not been hospitalized in several years.

His past medical history included coronary artery disease status post coronary artery bypass graft surgery, atrial fibrillation, hypertension, Alzheimer’s dementia (AD), and chronic kidney disease. He resided in a nursing home because his wife could no longer care for him at home. A palliative care consult was placed to discuss diagnosis, prognosis, and treatment goals with the patient’s wife.

Thomas’s wife reported that Thomas had been steadily declining over the past six to eight months, he was incontinent of bowel and bladder, and he was able to ambulate short distances and interact with her and other family members.

A geriatric assessment disclosed: needs assistance with activities of daily living (ADLs); dependent for instrumental activities of daily living (IADLs); able to remember three objects after five minutes; clock test abnormal; could not finish the Montreal Cognitive Assessment; able to draw a cube, name animals, recall four out of five words; and oriented to person and place but not time. Thus, he was categorized as being moderately impaired secondary to AD.

Further medical issues identified included malnutrition with hypoalbuminemia, depression with a geriatric depression scale score of 9/15, and debility. A speech language pathology evaluation revealed dysphagia related to pneumonia that may improve once pneumonia improves.

    PHYSICAL EXAMINATION

    DIAGNOSTICS

No diagnostic studies were conducted during this visit.

    CLINICAL QUESTION

How should diagnosis and prognosis be discussed with the surrogate decision maker?

    DISCUSSION

Most of what is known about communication of breaking bad news has focused on physician-patient communication in the oncology population at the end of life. Bad news is defined as any information which adversely and seriously affects an individual’s view of his or her future and is always in the eye of the beholder.1 Effective communication is the key to developing a relationship with the patient or family. This level of communication requires mutual respect and strong listening skills that allow for gathering and eliciting information and the implementation of a treatment plan. Doing this well can have a profound effect on how the patient or family approach their disease and its treatment. Effective communication can be achieved in the first meeting. In a first-person account a woman who had been a hospital patient explained how she changed hospitals and doctors three times during the course of her illness not because she was unhappy with the care, but because she was unhappy with the communication.2

Although physicians typically discuss diagnosis and prognosis, nurses are the constant, consistent health care providers, especially in the hospital or nursing home setting. Nurses are often the clinician who the patient or family asks to clarify questions or concerns after the multidisciplinary meeting is completed. Experienced nurses are more comfortable discussing prognosis compared to nurse with less experience.3

The communication strategy SPIKES (Setting, Perception, Invitation, Knowledge, Emotions and Empathic responses, and Strategies and Summary) is a mnemonic device developed to educate physicians on how to deliver bad news.4 Communicating bad news or counseling a patient/family about a chronic, progressive, eventually terminal disease is an essential skill for nurses as well. The nurse can apply the SPIKES mnemonic device to discuss diagnosis and prognosis with patients or families.

Setting up the Interview

Before starting a family meeting, confirm the medical facts of the case and plan what will be discussed. Ascertain if the patient will be able to participate. The patient’s preferences about which family members to include should be elicited. If uncomfortable with communicating the information, rehearse either mentally or to a colleague what you will say. Create the setting for the meeting, which should allow for privacy. A conference room is the ideal setting but if it is at the patient’s bedside draw the curtains around the bed. Some families still prefer to meet at the patient’s bedside even when the patient is unable to participate. Ensure there are enough chairs for everyone and that everyone is sitting down. This aids in relaxing the patient, gives the message that the focus is on the patient, gives an impression that time is not rushed, and prevents the psychological barrier of distance such as when one is seated and another is standing. Plan adequate time for discussion and alert nursing staff about the meeting to prevent interruptions.

Perception

Perception is assessing what the patient or family already understands about the patient’s health. The meeting should start with asking the patient or family to describe the medical condition. The statement “Tell me what you understand about your condition” is an effective opening. A common misunderstanding among health care providers when caring for a patient with a chronic progressive medical condition is that the patient or family may be in denial. However, the real issue is that they do not understand the disease process. This is also the time for the nurse to assess the patient’s or family’s ability to understand and their readiness to accept information.

Invitation

Invitation involves finding out how much the patient or family wants to know. Ask, “Are you ready to talk about our impressions?” or “Is this a good time to talk?” This is also when the nurse establishes how much information the patient wants or whether the patient prefers his or her condition be discussed with someone else. Most people want to know the truth; more than 90% of people want to know the truth about their diagnosis even if it is grave.4 Assessing the level of understanding the patient or family has about the disease helps the clinician to determine how much information/detail they need.

Knowledge

Sharing the information needs to be done in a straightforward, honest, yet sensitive manner. The information conveyed needs to be based on facts and evidence, not on personal opinion. Some families will ask, “What would you do?” A helpful response may be “It is important to base decisions on what your loved one would want.” Information that is conveyed correctly to the patient or family allows them to cope with the situation and plan for the future. Avoid the use of medical terminology or technical jargon. There are times when a “warning shot” is needed to prepare the family that bad news is coming; for instance, the clinician might say “We have your results and I have bad news.”

Emotions with Empathetic Responses

The clinician can display empathy while delivering bad news by saying “I am sorry to have to tell you this.” It is best not to just say “I’m sorry” because this can be misinterpreted for pity or being responsible for the situation.

Patients and families respond to the news in a variety of ways such as through tears, sadness, love, anxiety, or other emotions. Some experience denial, blame, guilt, or disbelief. Some people walk out of a meeting or respond nonverbally. Patients who might not be able to walk away but do not want to participate any longer may turn away, close their eyes, or just stop speaking. In this case clarify with the patient that they want to stop meeting and ask permission to return at another time or day. It is important to acknowledge emotions by asking for a description about what is being displayed. “You appear to be....Can you tell me how you are feeling?” or “Tell me more about what you are feeling.” Once the patient or family has worked through their emotions they are often able to make decisions in the best interests of themselves or their loved one. Patients or families who have good information and...