What to Say to Patients When Palliation Is the Best Option

September 1, 2001

SAN FRANCISCO-There is no shortage of educational programs on terminal care, advance directives, and breaking bad news to cancer patients. However, an equally challenging task is often overlooked in these training sessions: what to say when treatment fails to cure or control the disease.

SAN FRANCISCO—There is no shortage of educational programs on terminal care, advance directives, and breaking bad news to cancer patients. However, an equally challenging task is often overlooked in these training sessions: what to say when treatment fails to cure or control the disease.

At this difficult transition from therapy to palliation, physicians need to strike a delicate balance between "providing honest disclosure and maintaining realistic hope," said Geoffrey H. Gordon, MD, an associate director at the Bayer Institute for Health Care Communication. That way, "when the treatment fails the patient, you don’t feel like a failure yourself," he said.

Dr. Gordon described Bayer Institute’s workshop designed to address these issues in a special session held before the 37th American Society of Clinical Oncology meeting.

For More Information

The Bayer Institute for Health Care Communication is a nonprofit foundation whose mission is to improve health care through education, research, and advocacy in the area of clinician-patient communication.

For information about the "Care Not Cure: Dialogues at the Transition" workshop or the "train-the-trainer" dissemination program, contact the Institute at 1-800-800-5907 or visit www.bayerinstitute.org.

Effectively communicating at the transition may be easier than many oncologists think. One study showed that patients who hear just 40 seconds of empathy will be less anxious and will see their physician as more pleasant, helpful, and caring.

"There is a tremendous amount of empathy among clinicians, but you would never know it by watching their behavior," Dr. Gordon said. "It does not get expressed. However, it does not cost you time and does not turn the consultation into a psychotherapy session."

The 4-hour "Care Not Cure" workshop consists of brief lectures interspersed with case-based exercises, a video/discussion section, and a conclusion/evaluation. Tapes of patient-physician dialogues are used to trigger discussions among participants and generate ideas.

Participants receive an annotated bibliography of published articles that clarify important aspects of communication when patients transition from cancer treatment to symptom control.

Pilot sites for the program include Kaiser Permanente, Memorial Sloan-Kettering Cancer Center, the University of California at Irvine, and the University of Pittsburgh, among others.

The program is geared primarily to oncologists and their medical teams. Nearly 20% of oncologists surveyed have low self-rated competence in communicating with patients at their transition to palliative care, Dr. Gordon said. These physicians tended to use more disease-based care and less palliative care than their counterparts, and found these difficult conversations to be some of the least satisfying moments of their work.

It may not have to be so unsatisfying. While some oncologists may attribute their failure to communicate to a deficit in personality traits or "bedside manner," research suggests that good communication at the transition is a specific set of skills physicians can learn.

The Four R’s

The "Care Not Cure" workshop uses a "Four R’s" model for developing effective communication skills at the transition to palliative care:

  • Relate to the patient to elicit concerns and preferences.

  • Review treatment results to achieve a shared understanding.

  • Revise the goals and methods of care.

  • Reflect on how the transition affects your roles and relationship with the patient and family.

A major problem in relating is that physicians and nurses "block" disclosure of the patient’s concerns by interrupting with premature questions, explanations, or reassurances. When patients can’t finish their entire message, they stop listening and worry later that they or the doctor missed something important.

Dr. Gordon recommended a brief but direct expression of empathy. ("I know this is upsetting. . . It would be for anyone. . . You’re doing the right thing by. . . Let’s plan the next steps together.") Conveying this message concisely, verbally and nonverbally, reduces distress and improves coping.

In the review phase, the oncologist might ask the patient to recall the extent of cancer at treatment initiation and the goals of therapy at that time. That provides a window for the clinician to disclose, without using medical jargon, the treatment failure and to introduce the coming transition. ("The cancer hasn’t responded like we hoped. . . Some other treatments might slow its growth, but could also make you feel worse.")

Following that, the physician can outline the future by explaining the choices and offering to tailor care based on what that patient hopes to gain from further therapy.

Next, patient and clinician together can revise both the definition of treatment and the goals of care. Here, the clinician can introduce the idea that disease-only treatment, while hard to stop for fear of "giving up" and losing support, may be less important than attending to psychological, social, or spiritual concerns.

Those goals will vary by patient. The clinician can begin to evoke them simply by asking appropriate questions, such as "What do you really enjoy doing now?" or "If cure or control isn’t possible, what’s the next best thing to work toward?"

Here, it is important to foster a sense of realistic hope. For most patients, hope for cure changes over time to hope for a pain-free day, relief of symptoms, or attending a special event. Patients lose hope when they feel abandoned or isolated ("There is nothing more I can do for you.") or when they suspect people are withholding information. "By asking ‘What are you hoping for now? How close can we come to that? What would we need?’ we can help patients plan and work on realistic hopes," Dr. Gordon said.

Finally, clinicians need to rethink their roles with patients at the transition. "Lots of things change—the level of certainty and control we exert over care, the proper emotional distance with patients, and what we call success," he said.

"The transition asks very basic questions: What is the meaning of suffering and death? What is medicine’s role? Simply staying involved and bearing witness to patients’ ideas and feelings helps them with decisions at the transition and is therapeutic," Dr. Gordon said.