The complexities of honest communication

In my last column, I discussed two challenging cases — one of a young woman with post-transplant lymphoproliferative disorder and the other of a middle-aged man with leukemia cutis. Both patients have embarked upon treatment regimens, and I will revisit them here when I have some further follow-up. In the meantime, I’m still interested to learn what you would have done in these circumstances, so please keep your comments coming.

For this column, I wanted to talk about the complexities of having an honest conversation with a patient about prognosis. My thoughts on this topic were stimulated by a recent Schwartz Center Rounds that our center held, with a former patient’s widower as the primary discussant. Many of you at academic centers may already be familiar with the concept of Schwartz Center Rounds. These are usually monthly multidisciplinary conferences that are supported by the Kenneth B. Schwartz Center and take place at 215 health care facilities in 32 states. Ken Schwartz was a lawyer who died of lung cancer in 1995, and before his death, he founded the Kenneth B. Schwartz Center at Massachusetts General Hospital to help strengthen the relationships between patients and caregivers. The Schwartz Center Rounds are one of several programs the center continues to sponsor.

William Wood

I have always enjoyed our Schwartz Center Rounds and have found the topics to be emotionally and intellectually thought-provoking. The cases that come up for discussion often address profoundly important psychosocial issues that are relevant to not only the case at hand but also to many other cases that have and will continue to come up in routine cancer-care delivery.

Discuss prognosis early

During this particular week, we talked about a young adult who had died of a cancer at our facility after a long and courageous battle. Her husband joined us to discuss his perspectives on issues that went well and others that he thought might have been dealt with a little better. Ordinarily, I would not talk about the content of these rounds, but in this instance, he has continued to share his experience publicly both via a blog and in other public forums.

The young adult at the center of this case presented with metastatic disease. Both she and her husband had advanced degrees and were quite sophisticated, although neither was a health care practitioner. They also had young children at home. The patient’s husband raised an important point about the importance of frankly discussing prognosis early in the case. He said he and his wife had a good idea about her prognosis before they came in for their first visit, and in fairness, they were not told anything that changed their presumptions. However, the initial treatment discussions revolved around “there is a lot we can do” and did not directly address about what may (or would) eventually happen.

The patient’s cancer progressed, and as she developed worsening central nervous system (CNS) disease and experienced additional treatments with cognitive effects, such as CNS radiation and systemic opiates, she became less able to engage and participate in important conversations with her husband and children about what would happen after she was gone.

In retrospect, her husband said he regretted that he did not realize that “too late” might come before the end, and he wished that he and his family had done more earlier to take advantage of the time that they had. He talked about specific techniques such as writing letters for the children to be opened during milestones later in their life and about having talks to achieve closure that he wished that his wife had been able to do.

There were many other useful take-home messages that came from that Schwartz Center Rounds that day. However, I continued to think about the discussion we had about how willing we as practitioners are (or aren’t) to have frank conversations with our patients about preparing for the end in cases of incurable malignancy or preparing for times when things don’t turn out the way we might expect or hope in cases of potential cure or remission but risky therapy.

Fair but direct

A few days later, I was called to see a patient with refractory leukemia who needed consideration for a stem cell transplant. He was still in the hospital when I visited with him, and I thought about the Schwartz Center Rounds before I went to his room that day. In my ensuing conversation with him, I tried to be fair but direct. I talked about the long odds that I thought he faced, but emphasized that with transplant, there was at least an opportunity for cure. Overall, the conversation was not so dissimilar from talks I have had with other patients in similar circumstances. I paused and invited him to reflect and ask questions.

Admittedly, I wasn’t prepared for his reaction. The patient became increasingly anxious and agitated, and he told me that he had no idea that we were going to be having the kind of conversation that we had. He told me that I was wrong to have had that discussion with him without his wife present. He admonished me for what he perceived as my negativity and told me that he thought that the “transplanters” were supposed to be “the positive guys.”

Clearly, I had made some significant mistakes in my approach to the consult. I should have been more sensitive to the patient’s state of mind as an inpatient with a prolonged hospital stay, as compared with most consults I see in the outpatient setting. I should have thought more about the patient’s relationships and sources of support, and I should have made the setting for the conversation, the participants involved and my manner of delivery more conducive to conveying the kind of information that I tried to convey.

As I thought about it more, I was embarrassed that I had blundered through this after years of thinking about doctor-patient communication. I felt a bit like a naive medical student. I was reminded that competence in communication requires constant reflection, assiduous preparation for challenging circumstances and hard work.

Too much, not enough

Even if my approach had been better (as it surely will be next time), I was still left with the competing push and pull between not saying enough and saying too much. This is especially important in my field, in which a successful result is marked by cure, longevity and even spiritual transformation — but a substantial risk of failure can result in early death. How can we help our patients prepare for the worst while maintaining hope?

I still think that transparency and autonomy are the best of ideals, but I was struck by how much suffering I unintentionally caused this patient by the words that I used. When we discuss the possibility of a bad outcome with our patients, how direct should we be? Should we make this possibility seem real and immediate, so that personal preparations and conversations with loved ones can occur? Or should we discuss it abstractly, as something that happens in percentages to unnamed patients in observational studies, so as to keep it at arm’s length, limiting anxiety and suffering in the moment, hoping that our patients come to the right conclusions on their own?

There is a lot that I have learned this year. I think that I am a more competent and accomplished leukemia, lymphoma and stem cell transplant physician than I was on my first day of my new faculty position. But I know that I am still young and early in the journey toward understanding the nuances of the doctor-patient relationship in this technical, complicated and high-risk, high-reward field.

I would welcome your thoughts and observations about how you have addressed these issues in your own practice and how you strike the right balance between respect for patient autonomy and compassion for human suffering in these conversations.

William Wood, MD, is assistant professor of medicine, division of hematology/oncology, at the University of North Carolina, Chapel Hill. Dr. Wood may be reached at william_wood@med.unc.edu.

Disclosure: Dr. Wood reports no relevant financial disclosures.