Let’s cross that bridge now: having ‘what if’ conversations with patients and families
No patient or family wants to get bad news, and no doctor wants to give it. Human instinct tells us to avoid unhappy conversations—so we tell patients, “let’s cross that bridge when we get to it.” This can be a natural default that puts off talking about potential negative outcomes in the hope that maybe we’ll never have to talk about them at all. Delaying such conversations may ultimately do our patients, their families and ourselves a disservice. When we don’t talk about what worries our patients and their families, we leave those worries to rest heavily on their minds. This can weigh them down when they could instead be working through their fears and preparing for what the future might hold.
As a pediatric oncologist specializing in quality of life and palliative care, leaning in to difficult moments is part of my job. But many doctors don’t have the same training. Navigating conversations to manage uncertainty is a tricky part of providing patient-centered cancer care. I’ve seen this as I work with our St. Jude patients and families. For example, the father of one of our patients recently emailed our team to say, “When our son got sick, we were so helpless, and when he relapsed, we were helpless all over again. It was you, and people like you, who patiently helped us understand what it was that we needed to do…Your work is hard work, but it is good work, and we are so grateful that you do it.”
To help doctors have ‘what if’ conversations, I recently teamed up with former St. Jude fellow Jennifer Snaman, MD, and her colleagues at Dana-Farber Cancer Institute, to create a framework for these interactions. Published in Pediatric Blood and Cancer, this framework may help empower doctors to address the fears of patients and their families and provide information that patients and families need to understand what may happen.
“While worrying about the here and now, patients and their families can also be occupied with worries about the future, grappling with the prognosis and how to prepare for what might happen,” Snaman explains.
In my experience some of the most common concerns patients and families going through cancer treatment ask me about are:
- What if the cancer comes back?
- What if the treatment doesn’t work?
- What if the side effects of treatment turn out to be life-threatening?
Patients and their families want improved communication with their doctor around prognosis. Without clear communication, misunderstandings can creep in, exemplified by research showing most parents of children with advanced cancer and most adolescent and young adult cancer patients expect better disease outcomes than their oncologists. This means that when negative outcomes start to happen, patients and their families can feel blindsided and unprepared for what they now face.
Central to our framework is having ‘what if’ conversations during times of clinical stability or even when delivering positive or “good” news. Even when doctors deliver difficult news clearly and compassionately, the stress of such situations may prevent patients and families from understanding. Creating opportunities to have ‘what if’ conversations regularly and during more positive interactions may help reinforce and strengthen the doctor-patient relationship and provide opportunities for patients and families to truly grapple with their thoughts and feelings.
“Determining when to involve pediatric or adolescent patients directly in ‘what if’ conversations should take into account the patient’s wishes, with the understanding that communication preferences may shift over time,” Snaman says. “It may also be helpful to involve psychosocial clinicians, other members of the care team or specialists in palliative care in such conversations.” It is also important to normalize these conversations, ensuring patients and families that there is nothing about their current situation that makes us more worried. This can allow space and time for other concerns to be raised.
While many doctors may harbor concerns around talking about prognosis or unpredictable outcomes, these conversations may make patients and their families feel more secure when negative situations unfold. Doctors don’t need to have the answers ready for all the questions or concerns that might come up during these conversations. Sometimes, holding and owning uncertainty is all that is we can do. In other circumstances, oncologists can collaborate with other interdisciplinary providers to address specific concerns.
We believe our framework will help doctors achieve their goals for helping patients and families improve their understanding of the prognosis, explore concerns and examine their preferences for care.