Coauthored with Shaalan Beg, MD, MS
One of the most difficult things I've ever experienced as an oncologist is navigating a situation where my duties to be honest to the person I treat abut another's cultural or social norms. I remember one experience so vividly that illustrated that dilemma. It happened when I was in fellowship. I saw a gentleman in his 80s, facing a new diagnosis of penile cancer. The cancer was locally advanced, virtually replacing much of the organ. It was clear that he could not undergo any form of treatment that would spare him from an amputation. I presented the case to my attending and as we made our way to meet with the patient, his sons met us in the hallway.
"What do you think, docs?" his older son asked.
"Well," my attending stated, "he has advanced penile cancer, but fortunately, the imaging doesn’t show it has spread, so we can still take care of this. He'll need an amputation."
Their faces fell. "I expected this," his youngest son stated. "That's fine, but you can't tell him he has cancer."
I remember being shocked. How can we tell him he needs his penis amputated, but not tell him why? He must have suspected cancer? Surely, the news should not surprise any of them.
It's a scenario that's come up occasionally, and quite frankly, even after years of practice, it's a situation that I struggle with. I decided to talk with my friend Dr. Shaalan Beg (@ShaalanBeg) about this. Dr. Beg is a pancreatic cancer clinical trialist and the director of Gastrointestinal Cancer Medical Oncology at UT Southwestern Medical Center. He leads the pancreatic cancer multidisciplinary program at the Simmons Comprehensive Cancer Center.
DSD: Dr. Beg, can you recall a similar experience?
SB: More than once, and I struggle with it every time!
Most recently, a family member was waiting for me in the hallway. I knew what was coming—they wanted to speak with me before I walked in the room. Their mom had a pancreatic tumor and it had spread to other parts of the body. She was in pain and was becoming weaker. From what I could tell by reviewing her chart, chemotherapy was not going to help her live better, or live longer. The patient didn’t understand English and her family did not want a translator to be involved. “I know she has stage IV pancreatic cancer,” her child said. “Please don’t tell her she has cancer. Mom is very faint of heart. She will be devastated if he hears the ‘C’ word.” They brought her over to see if any treatment would be helpful, and if not, then they did not want to burden her with the details. The family was trying to protect her.
DSD: How did you process and think through the request?
SB: My primary responsibility is to my patient’s well-being. Key to that well-being is her ability to make an informed decision that makes the most sense to her. How can she make a decision if she doesn’t know her diagnosis? I have seen families torn apart on this issue and it can look something like this: The family knows the diagnosis. The patient knows something is wrong. The family knows that the patient knows something is wrong, but no one wants to talk about the diagnosis in front of the patient! Family and friends may be talking about the cancer behind the patient’s back. A medical diagnosis, especially cancer, should be a time for a family to come together. Instead, what we can end up with is a family divided by a cloak of secrecy that leads to the patient feeling scared and isolated. Information is power, and every patient deserves to have the information they need to make the best decision for themselves.
But is it as cut and dry every time? In medicine we have to accept that people may have different preferences. This family member was clearly being assertive. But why? And was that really a “bad” thing? Was I considering cultural differences in decision making? Cultures like what we have in the United States promote an “individual” approach and the patient’s autonomy is in the center of all decisions. Paternalistic medicine is history. The individual is the best judge of what makes sense to them and the buck stops there. In other cultures, this is not always the case. Major family decisions may be made by a designated individual, or head of household, and the patient may defer the responsibility to this person similar to how a parent makes decisions for a minor. People from other cultures may make decisions through consensus across multiple stakeholders (children, siblings, uncles, aunts, grandparents, cousins). Maybe for this clinic visit the decision making is more complex and the “patient” is actually the entire family. What if my regular approach will worsen the anxiety, cause more conflict, and further isolate my patient by destroying the fabric that holds this family together?
DSD: How did all of this inform what you said?
SB: Family members are often trying to protect their loved one from being hurt. There are so many ways a physician can mess up such a delicate conversation. I ended up spending some time with the family member and assured them that I heard their concern. We came to an agreement that I would ask, “What do you understand about what is going on?” This would give my patient a chance to let me, and her family, know how much she knew and how much she wanted to know. I insisted on having a translator involved.
It’s important to understand where the family is coming from and why they are making the request to not disclose the diagnosis. Is it fear of how the patient may handle the news? Distrust of the medical system? Lack of awareness of what is going to be discussed? Or, maybe they had a prior, less-than-optimal encounter with the medical system and they are worried about a similar experience happening again. Context really can help process what’s going on.
I may try to decompress the situation and let the family know that we can work towards informing the patient over multiple visits—not everything needs to be said all at once. Often I don’t have the time to go through my list of topics in one session and will schedule a follow-up visit. Taking time allows the patient and the family to prepare better, I think.
Looking back, the idea that not everything requires disclosure in one encounter is a good one. Back then, I felt that starting with what was going on was really the only place to truly start. If the gentleman I was meeting with for the first time did not know what he was even here for, how could we discuss treatment? But with time I’ve learned that the learning curve regarding cancer is steep—not just for the person diagnosed but for those who care for them—and everyone absorbs information at their own pace. As Dr. Beg stated, taking cues from them is critical. While some people respond well to a direct “just the facts” approach, others respond better to a slower, more deliberate process, and one that lets me demonstrate that I am a person first—a husband, a father, a son—and an oncologist second.
Originally published in "Discussions With Don S. Dizon" on The Oncologist.