Communication Is Our Procedure

At CPC—the Clinical Pathological Conference—the story unfolded. A previously well African American man came to our hospital with vague chest discomfort, shortness of breath, and leg edema. During that first admission his symptoms were easily treated, yet the patient returned after a few months with similar symptoms. Over time, hospitalizations became more frequent and prolonged. He grew weaker, thinner, prone to delirium; his family was always with him, concerned, asking questions, and supporting him in and outside the hospital. The CPC speaker, a Professor of Medicine and an excellent internist, carefully dissected the history and examination findings for clues. He explained the laboratory and radiologic tests, and how they shifted post-test probabilities in the differential diagnosis. At the end of the story the patient, after repeated hospital admissions with the best medicine has to offer, died in the hospital. In keeping with tradition, the professor, who had not treated this “unknown” patient, announced his carefully reasoned clinical diagnosis—cardiac failure due to infiltrative amyloidosis. He then called for the definitive pathologic diagnosis from autopsy tissue examination. The pathologist showed slides that confirmed amyloidosis as the cause of this patient's illness and death. But then, the professor broke with CPC tradition—he reported on his call to the patient's family. Observing their father's/husband's/brother's illness, he asked, what was the family's diagnosis? They knew the patient had suffered and died from a brain tumor. Their reasoning was clear, and based on what they had heard and seen. There were obvious symptoms of brain cancer, with progressive weight loss, confusion, and loss of control over his movements. And several physicians had told them about the large mass found on brain imaging—a meningioma. Concluding his discussion, the professor challenged his peers to consider how the patient's care might have differed if based on a shared understanding of diagnosis, prognosis, and treatment options.

Recently, the National Palliative Care Research Center and the American Cancer Society Cancer Action Network teamed up to explore the public view of palliative care. People without medical background readily understood palliative care as specialized medical care for people with serious illness. Our primary goal is to improve quality of life for both the patient and the family, and we offer treatments to relieve symptoms, pain, and distress. ¹ In order to treat patients, we first listen and seek to understand their symptom experience, and the psychological and spiritual sources of suffering that magnify physical pain. When asked, we also help patients, families and clinicians reach a common understanding of diagnosis, prognosis, and key clinical choices that affect quality of life. ²

Communication is our procedure and core skill. Good communication is not sufficient to improve quality of life for a patient living with serious illness, but it is a necessary prerequisite to all of our effective interventions. We rely on quality communication to assess symptoms, share information, provide support, and facilitate shared decision-making. High-quality communication is itself a priority for seriously ill patients and for the families who care for them.^3,4 We must not omit the laying on of hands and stethoscope, careful review of radiologic data, or meticulous interpretation of laboratory results. However, when we do this job well, we spend far more time than other clinicians simply listening and communicating with patients and families.

Palliative care clinicians use high level communication skills to facilitate complex shared decision-making. In this issue of the Journal, Marie Batikas and colleagues provide a thought-provoking narrative review of palliative care and decision science. ⁵ Interventions in decision science have historically focused on simpler, common choices in the outpatient setting, but palliative care research is extending the methods of decision science to examine ethically demanding choices. Promising decision aid research suggests new ways to educate patients and facilitate their role in shared decision-making. As the authors of this review point out, hospice and palliative care clinicians may also be able to learn from a scientific approach to decision-making, providing us with sharper insights on key decision points and more innovative ways to improve the presentation of choices.

How can we organize our work to make communication more efficient and effective? Innovators in hospice and palliative care are refining methods to augment face-to-face communication. Written materials may help us to share information. In intensive care units in France, a carefully worded pamphlet improved families' comprehension of the morass of information during critical illness. ⁶ The same investigators then combined written material with an interdisciplinary family meeting, after which families felt more informed and less emotionally traumatized by serious illness and death. ⁷ In another innovative approach to communication, advanced practice nurses were employed to provide structured psychoeducational support to patients with advanced cancer. This intervention was designed to support patients from rural communities, so most of the communication was by telephone, yet it resulted in significant improvements in depression and quality of life outcomes. ⁸ Enhanced communication may also be effective to improve symptom control. Kroenke ⁹ has shown that cancer patients with pain or depression improve symptomatically when regular clinical care is augmented by scheduled nursing monitoring calls and automated transmission of patients' symptom scores from home to office.

We face new challenges as the practice of hospice and palliative care expands. Consider the diversity of culture, language and values represented in this Journal. The current issue contains original research from Belgium, the United States, China, Singapore, Germany, and The Netherlands. While quality of life and place of death may be important outcomes across cultures, differences within cultures demand insight. In traditional Chinese culture, frank information about poor health status is not a universal “good,” yet quality of life is still an important patient goal. In a study in this issue, Chinese patients not aware of their cancer diagnosis reported better physical and emotional quality of life. ¹⁰ Communication skills must include attention to culturally determined communication needs. Hospice and palliative care clinicians are taught the importance of respect for patient autonomy, yet many of our decision-making encounters are with surrogates who struggle to speak on behalf of the patient. Age, literacy or cognitive capacity, cultural or religious values, and family structures that do not match advance directive or surrogate norms demand a “big tent” definition of autonomy to individualize communication approaches. ¹¹

In the pages of the Journal of Palliative Medicine we can look forward to continued publication of scholarship informing our communication skills. Narratives, qualitative analyses, clinical trials of new decision-making interventions—all will be needed to gain the 360-degree view of this most humane aspect of health care delivery.