Most of us have felt our stomachs sink as we opened a patient’s radiology or laboratory report and realized the patient faced a grave situation. If we’re lucky, we have a couple of days before a scheduled patient appointment to prepare ourselves to deliver that bad news. Other times, we may have just hours or even minutes of reviewing test reports before having to walk into the clinic or inpatient room where the patient and perhaps his or her loved ones anxiously wait.
S. Monica Soni, MD
Lowell Kleinman, MD
Conversations about prognosis are among the most difficult for physicians. We worry about using the wrong words, crushing someone’s hope, and causing emotional distress. Some of us have received 1 or 2 hours of “how to break bad news” lectures in residency or fellowship, but many of us have not even had the benefit of that limited formal training. Even with practice, these conversations can be difficult and uncomfortable. This awkwardness, combined with scheduling pressures, often results in not spending sufficient time with patients discussing prognosis.
Redefining Prognosis
Prognosticating length of life remaining is not a core competency of medical training or practice. To physicians, it feels like prophesying, and when we do attempt to predict survival, it is likely to be wrong.1 We are more accurate in our predictions when a patient has days to weeks of life remaining. However, even in this circumstance, we often overestimate the amount of time a patient has left.2 The reason is not only because the science of prognostication is inexact, but also because our bias is to want our patients to live longer.
Despite the imprecision of prognostication and our personal biases, we can help our patients cope with their fears and worries around prognosis by redefining what the term means. For example, including quality-of-life discussions as part of the prognostication process allows us to understand what matters most to patients: quality of life or quantity of life, and how we can help them receive care that is aligned with their values, preferences, and goals.
Despite the imprecision of prognostication and our personal biases, we can help our patients cope with their fears and worries around prognosis by redefining what the term means.— S. Monica Soni, MD, and Lowell Kleinman, MD
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By expanding the definition of prognosis to include discussions of how patients can experience a high quality of life through the management of disease symptoms and treatment side effects, we can help reduce the anxiety patients and their families feel when thinking about an uncertain future. It is often the not knowing of what lies ahead and the anticipation of the loss of dignity and personhood that create the most fear and worry for patients. If we hone our prognosis communication skills to better address these concerns, we will relieve much of the stress and burden of illness that patients so desperately need.
Helping Patients Make Informed End-of-Life Decisions
Research shows that approximately 20% of patients do not want to discuss prognostic information or only want to hear good news.3 How we balance respect for patients’ wishes while wanting them to make informed decisions about their end-of-life care is a communication art form, and where we may feel the most lost.
Using open-ended questions such as “Tell me more about why you would rather not discuss prognosis today?” or “What worries you about discussing your prognosis?” can build trust and provide insights into patients’ thinking and coping styles. We may hear concerns about how the information will affect their loved ones or that speaking about prognosis may lead to depression. Or perhaps we will learn of cultural reasons for steering away from the conversation altogether or preferences of having other family members make their decisions.
What we hear will help guide what we do. For example, we may agree not to discuss prognosis that day and instead ask for permission to check in at the next visit. Or we may agree to discuss prognosis with the patient’s proxy. Such conversations truly are negotiations in which we strive to find ways to share information and guide our patients.
Using Evidence-Based Tools to Improve Prognostic Communication
Discussing what is yet to come with patients is no easy task and raises questions about when to broach the topic of prognosis and goals of care, and how to do so without quashing patients’ hope. According to ASCO’s Patient-Clinician Communication Consensus Guideline,4 clinicians should initiate conversations about end-of-life preferences early in the course of incurable illness and readdress the topic periodically based on clinical events or patient preferences. The guideline also recommends that clinicians provide diagnostic and prognostic information that is tailored to the patient’s needs and offers hope and reassurance without misleading the patient.
Here are some additional evidence-based communication tools to help clinicians effectively deliver prognostic information to their patients.
SPIKES: A Six-Step Protocol for Delivering Bad News to Patients—For more than 2 decades, the six-step protocol described in the mnemonic SPIKES has been used to help oncologists achieve four important objectives when communicating bad news to patients: gathering information from patients, transmitting medical information, providing support to patients, and eliciting patients’ collaboration in developing a future strategy or treatment plan. The six communication steps in SPIKES follow5:
Setup—Be prepared with patients’ medical facts and have a plan for delivering the news.
Perception—Determine patients’ understanding of their medical situation and how much information they want.
Invitation—Ask permission about whether now is a good time to discuss the news.
Knowledge—Be direct in explaining the medical situation and use language that matches patients’ education level.
Empathize—Use empathic statements to respond to patients’ emotions. For example, “I know this must be disappointing for you.”
Summarize and Strategize—Summarize the clinical information and create a plan for the next step, which may include further testing or a discussion about treatment options.
The Patient Dignity Question (PDQ; www.dignityincare.ca/en/the-patient-dignity-question.html)—“What do I need to know about you as a person to give you the best care possible?” is a question designed from empirical research to assess patients’ care priorities at all stages of illness and has been shown to improve patient and provider perceptions of empathy and communication. PDQ answers can serve as reference points when discussing the impact of disease and treatment on patients.
Done well, our prognostic conversations are filled with empathy, kindness, and healing.— S. Monica Soni, MD, and Lowell Kleinman, MD
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VitalTalk (vitaltalk.org)—This training program for clinicians seeking to advance their communication skills is available both online and in person. VitalTalk provides video guides for delivering serious news, addressing goals of care, and conducting a family conference. It also has resource tools for establishing rapport with patients, offering prognostic information, including how to balance hope and realism, bearing witness to the end, and tracking and responding to emotion, among other topics.
Delivering Whole-Patient Care
Discussing prognosis is difficult for physicians and patients alike. It is vital to patient well-being that we hone our skills and lead the way. If we do not bring up prognosis, many patients will worry about the worst-case scenarios in isolation. Done well, our prognostic conversations are filled with empathy, kindness, and healing and can, in turn, be fulfilling not only for our patients, but for us as well.
DISCLOSURE: Dr. Soni is an advisor for Waymark. Dr. Kleinman has reported no conflicts of interest.
REFERENCES
1. White N, Reid F, Harris A, et al: A systematic review of predictions of survival in palliative care: How accurate are clinicians and who are the experts? PLoS One 11:e0161407, 2016.
2. Glare P, Virik K, Jones M, et al: A systematic review of physicians’ survival predictions in terminally ill cancer patients. BMJ 327:195-198, 2003.
3. 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 24:4214-4217, 2006.
4. Gilligan T, Coyle N, Frankel RM, et al: Patient-clinician communication: American Society of Clinical Oncology Consensus Guideline. J Clin Oncol 35:3618-3632, 2017.
5. Baile WF, Buckman R, Lenzi R, et al: SPIKES—A six-step protocol for delivering bad news: Application to the patient with cancer. Oncologist 5:302-311, 2000.
Dr. Soni is Associate Chief Medical Officer of New Century Health in Los Angeles. Dr. Kleinman is Director of Palliative Care at John Muir Health/John Muir Medical Group in San Francisco.
Disclaimer: This commentary represents the views of the authors and may not necessarily reflect the views of their institutions, ASCO, or The ASCO Post.
