Enhancing Communication in the Advanced-Disease Setting

Conversations with terminally ill patients about treatment options for end-of-life care often occur when the patient is in pain, heavily medicated, and quite ill—on average, just 1 month before the patient dies. Just as often, such discussions may be altogether absent, or they may occur in a manner that is more uncomfortable than it has to be, for patients and providers alike.

Two palliative care specialists would like to improve on these scenarios. At the 18th Annual Conference of the National Comprehensive Cancer Network (NCCN), Lillie D. Shockney, RN, BS, MAS, and Anthony Back, MD, shared their approach to communicating with patients who have advanced-stage cancer. These conversations require honesty balanced with sensitivity and respect for the patient’s own goals, and they should occur within a time frame that allows patients and families time to prepare, they said.

“It is very unfortunate to be looking at a jaundiced 85-year-old with metastatic cancer for whom there has been no conversation at all about end of life,” said Shockney, associate professor of surgery, gynecology, oncology, and obstetrics at Johns Hopkins, Baltimore, Maryland.

According to Shockney, who is a breast cancer survivor herself, research has shown that patients want to know the truth, that a patient’s future course can be predicted with some accuracy, and that an honest conversation does not “rob patients of their hope,” trigger depression, or hasten death. In the discussion about continuing or stopping further treatment, the patient’s own goals must be clarified. Is it the patient’s wish to see a grandchild born in the coming months? Is it the patient’s wish to maintain quality of life without aggressive toxic treatment? “To engage in such a discussion, there are some things you can ask,” she said (Figure).

“Take time to ask the patients what gave them their greatest joy before their diagnosis of advanced cancer, and discuss whether these joys might be restored,” she suggested.

As an example, she described how her own brother-in-law wished to see his grandson born, but time was running out. Shockney arranged to have him taken by ambulance to the imaging center to be present for an ultrasound. He saw the baby moving, and he framed the ultrasound picture. “That’s my grandson,” he tells visitors.

Figure

A Typical Scenario

Communicating with patients about end-of-life care must bring together the multiple points of view of the various parties, and this is challenging, said Back, who is professor of medicine and adjunct associate professor in the Department of Bioethics and Humanities at the University of Washington School of Medicine, and director of the Program on Cancer Communication at Seattle Cancer Care Alliance.

The patient says, “Don’t talk to me about anything negative,” and “I can do more.” The oncologist says, “I don’t think he’s ready for the conversation” and “I don’t have time for it.” The primary nurse worries, “He’s running out of time to take that trip,” and he or she questions, “I’m not sure if it’s OK for me to raise this issue.”

These different dots remain unconnected. The oncologist laments that the patient did not respond to third-line chemotherapy. The nurse acknowledges the “disconnect” between the patient’s experience and expectations, but resigns himself or herself to the possibility that “this may be the best we can do,” Back said.

“The best care engages patients—at the level of their story, their values, their families in ways that amplify their resilience,” he emphasized.

Paradigm Shift Is Needed

Back said a “paradigm shift” is needed for communicating with patients in the advanced-disease state. This shift would include a better understanding by patients that treatment will no longer be curative, greater access to early integrated palliative care, evidence-based skills training in end-of-life communications, and a system infrastructure that captures data, displays progress, and prompts clinicians about end-of-life care planning, he suggested.

The new paradigm would reflect a shift in thinking from “the patient is resistant” to “I can use a toolbox of skills to cultivate trust,” and from an attitude of “I don’t have time” to “I’ll do my share as part of the team,” he added.

The Patient Encounter

The speakers emphasized that the oncology staff should prepare for these difficult conversations. This preparation includes knowing what a conversational encounter should accomplish, and limiting the conversation to just a few key points. They suggested “double framing” of the pros and cons of the treatment options to minimize bias. An example is this: “With this option, 30 out of 100 patients would have their cancer shrink for a few months, but another way of saying this is that 70 out of 100 would have their cancer grow or just stay the same,” Back pointed out.

The conversation should be paced, with the easier decisions made first, he said. And it should reinforce the positive things that patients and families are already doing.

Finally, make a recommendation that brings together the elements of the conversation, he suggested. Instead of saying, “This is what we have to do,” tell the patient, “This is how I think we can move forward in a way that honors the kind of life you’ve lived.” l

Reference
Back A, Shockney LD. Communicating with patients on treatment options for advanced disease. Presented at: 18th Annual Conference of the National Comprehensive Cancer Network; March 13-17, 2013; Hollywood, FL.