Effective communication with patients and their families is central to our work as healers. We share information, answer questions, and provide guidance. At times, we deliver news we wish we did not have to give. The good news is that the skills necessary to share difficult diagnoses can be learned and refined over time, just like any other skill in medicine.
Communicating about a serious pediatric diagnoses can often be heartbreaking and these important conversations can be challenging. This is particularly true when discussing anticipated mortality or discussing other serious conditions (both physical and psychological) that will entail limitations in life. Severe illnesses affect the body but they also touch on dreams, expectations– often requiring the acceptance of significant loss and mourning.
Today’s article discusses the emotional implications of delivering bad news to patients and families, along with recognition of some of the challenges faced by providers in delivering “bad news”. The discussion, adapted from the toolkits of our palliative care colleagues, explores compassion-focused strategies and principles to consider.
- Secure a private, comfortable, and quiet setting. Ensuring an environment that is calm will allow patients/parents a better chance to fully process the news they are about to hear. In the absence of beeping machines, busy hallways, or other medical staff, patients/parents will be best able to digest serious life-altering information. External distractions add to distress, confusion, and discomfort. A peaceful environment sets the stage for healthy communication between patients/parents and their providers.
- Inquire: Starting with a question as simple as “What do you know about what is happening to you/your child?” should be a launching point into a discussion about any dialogue about a newly diagnosed illness. Rather than entering a conversation with a patient with a scripted diagnosis in hand, inquiry shows the patient that their needs and perspectives are valued and integral to the nature of care that will be required. Understanding patients’ knowledge can help physicians tailor their communication to facilitate deeper rapport and optimize patient understanding and engagement in ongoing care.
Inquiry is particularly crucial in communicating with youth because knowledge of their understanding of issues of morbidity and mortality are impacted both by their developmental stage and by family dynamics and influence. “If I’m talking to a fully developed functional adolescent about a terminal diagnosis, they already likely know that they’re dying. So I try to find out the parents’ perspectives on what their child knows, because family members tend to completely underestimate their child’s awareness,” says Dr. Toluwalase Ajayi, MD, pediatric palliative care physician at Rady Children’s Hospital.
In the arena of major psychiatric or developmental conditions, predicting outcomes and offering a prognosis can be a tad more challenging, as progression and prognosis for these conditions can be more fluid and uncertain, but full engagement and clear communication with youth and their parents is clearly important in preparing all for their future lives and for proposed treatment interventions..
In all of these situations, asking questions can be a stepping stone in aligning a patient and their family’s awareness of their prognosis, and it is a practice that reduces the influence that personal bias or misunderstanding may have in delivering care. Every ensuing decision in a patient’s care is built on the initial question, rather than having a pre-ordained plan.
3. Signposting: When the prognosis is grave, providing a warning can be as simple as saying, “What I’m about to say may be difficult to hear” but every step in delivering bad news should be crafted to gradually ease patients/parents into hearing the news with clarity. When physicians signpost in their communication, they prepare patients’ minds and bodies for the ensuing information. In the same way, transparent, compassionate communication primes patients for listening attentively, even if the warning is just a few words.
- Delivering information clearly and directly. Avoiding complicated medical jargon and limiting non-essential details, allows for communicating more effectively and assuring discussion of the big picture concerns. It also allows for follow up questions and dialogue driven by the patient/parent’s understanding and emotional preparedness. Allowing the discussion to proceed at their rate, in their language, and at their pace assures better communication about critical information. Patients will be less intimidated when they can understand their physicians’ language, which is optimal for cooperative and collaborative interventions.
- Silence: Granting patients and families the space to digest the difficult information they have heard is equally, if not more, important than delivering the news itself. Oftentimes, physicians may have the urge to discuss treatment outcomes or general statistics about prognosis before patients/parents digest the “bad news” so as to avoid or limit the emotional pain of the moment. While some degree of optimism about the future will always be appropriate it is important to avoid the trap of burying the bad news before it is fully received and processed.
Instead, we must aim to pause, wait, and empathize with the emotions somebody is having and acknowledge them fully. And then, “once we’ve done that, there’s a little space for questions for the family,” comments Dr. Kimberly Bower, palliative medicine physician at Rady Children’s Hospital – San Diego.
Silence is crucial in communicating about difficult matters, especially ones with life changing implications. It is a tool that can be leveraged to honor the gravity of the situation, and is more powerful than rushing to share statistics about prognosis and treatment outcomes. Silence is humanizing and prepares patients and parents to accommodate to the new reality of their lives.
Though this piece draws from the literature about communication strategies that are often implemented in the palliative care context, they remain relevant when dialoguing with patients and families about a variety of conditions. Effective communication is crucial across all specialties in medicine. In fact, a study by Weiss et al. found that empathic communication was associated with reduced patient anxiety, which is crucial to the healing process.
Learning to communicate with empathy and compassion is central in our roles as healers and practitioners. Balanced with our expertise in clinical skills in diagnosing disease and prescribing treatment, will instill a dose of humanity in conversations with patients that can advance our therapeutic efforts.
Behind every health condition is a human being. Communication that involves listening, compassion, and empathy that puts patients first is a way that deepens connections and creates healing spaces despite the challenges and suffering that illnesses bring to patients/families lives.
Weiss R, Vittinghoff E, Fang MC, et al. Associations of Physician Empathy with Patient Anxiety and Ratings of Communication in Hospital Admission Encounters. Journal of Hospital Medicine. 2017 Oct;12(10):805-810. DOI: 10.12788/jhm.2828. PMID: 28991945.
Acknowledgement: SmartCare wishes to acknowledge and thank Sahit Menon, a second-year medical student at the University of California, San Diego and summer scholar in the CAP Inclusive Excellence Program who prepared this article. He believes that effective, compassionate communication is paramount in medicine – especially in light of empowering patients and building trust to optimize care. He is also interested in quality improvement in palliative care, physician well-being, and discovering modes of creative expression that allow patients to share their authentic stories.
Desiree Shapiro, MD is a child and adolescent psychiatrist at UCSD/Rady leading the CAP Inclusive Excellence Program, an initiative to grow our CAP workforce.