By James Tulsky, MD
James Tulsky, MD, is chair of Psychosocial Oncology and Palliative Care at Dana-Farber, with a longstanding research interest in clinician-patient communication and quality of life for patients with serious illnesses. He is also founding director of VitalTalk, a non-profit with a mission to nurture healthier connections between clinicians and patients through communication skills training.
Everyone who lives with cancer worries about the future. Not talking about these worries doesn’t make the fear go away and, while for some people it’s just too hard, in my experience most patients welcome the opportunity to have these difficult conversations. For many, that includes asking questions like: “What are my options if the cancer treatment doesn’t work?” “What would the last phase of my life actually look like and what can I expect as it gets close?” “When is the right time to complete an advance care plan and how do I make those decisions?” Or, sometimes people just want to say, “I worry so much and I can’t manage it by myself.”
These questions are loaded. Yet, I’ve found that voicing these concerns and having an honest conversation about the future is surprisingly helpful. My palliative care patients frequently learn that some of their worst fears are unfounded, and that having knowledge and a plan is comforting.
Ideally, oncologists initiate these discussions. But between the many tasks of a clinic visit and oncologists’ own concerns about upsetting their patients, this doesn’t always happen. Fortunately, there is growing acknowledgment of the importance of these discussions, and we are actively working to train oncologists – at Dana-Farber and elsewhere – to be more comfortable with these discussions and to better balance honesty with empathy. But if these thoughts are on your mind and have not already been addressed by your care team, how can you start this conversation?
A few years ago, a team I was working with came up with a simple acronym, “WISH,” that outlines four steps when speaking about your feelings with your clinician. While each of these steps may be obvious to many readers, they often get overlooked in the anxiety and brevity of an office visit.
First, clarify What you are feeling. Are you sad, scared, anxious, curious? In the moment when the feeling arises, you may not be able to easily self-reflect. But if it’s something you’ve been thinking about for a while, it can be useful to look back and give the emotion a name.
This primes you for the second step where you say directly to your clinician, “I’m feeling….” Our research shows that oncologists respond more empathically when patients articulate their feelings strongly and clearly.
Third, Speak directly and in small chunks. There is probably a LOT on your mind. But so much needs to get accomplished during your clinic visits, and you’re more likely to get the response you’re looking for if you can be specific and succinct when expressing your concerns.
Finally, ask for Help. Unfortunately, it may not be enough to say you’re scared. You may want to ask for what you need directly. For example, do you want information about your prognosis, alternative treatment options, or what happens if you choose to stop treatment? You could say, “Doctor, I need help understanding what happens if the treatment I’m taking doesn’t work – what does that future look like?”
If these suggestions sound obvious, then you’re probably the kind of person who is an effective advocate for yourself. Unfortunately, many patients don’t feel that they can fully speak their minds with their oncologists. I hear people worry that if they talk about end-of-life concerns, their oncologist may get the wrong idea and not continue to do everything possible to find an effective treatment for their cancer. Others worry that asking certain kinds of questions may offend their doctor or send a message that they don’t trust them.
Just the opposite is usually true. Oncologists understand that fear and ambivalence are common expressions in people with cancer, and that questions about advance care planning or even hospice don’t mean that a person does not want to continue chemotherapy. In fact, many oncologists are relieved when patients initiate the conversation, because they know it’s now okay to talk about. No question should be off limits with your care team.
Our goal as cancer care providers is to learn what is most important to you, and to make sure that the treatment you receive matches your priorities. To do that, patients need to say what they WISH.
Palliative care physicians, psychiatrists, psychologists, and social workers can also help patients facilitate difficult conversations with their clinicians and loved ones, and provide other emotional support. Learn more about these resources through Dana-Farber’s department of Psychosocial Oncology and Palliative Care.