By Dr. Isaac Chan
Hers was the face of someone defeated by cancer. Our conversation was grim. She wanted to “fight,” to continue treatment. But there were no more options.
I vaguely remember speaking, feeling hopelessly ill-equipped. I, too, felt defeated. As a young physician and aspiring oncologist, I wondered: How do we prepare ourselves and our patients for these conversations?
Thankfully, I am not alone in struggling with this question. A new theme in medicine has emerged: how to talk about dying. As a field, oncology has been at the forefront of this movement. Some suggest making exposure to end-of-life encounters mandatory during medical school. Others stress creating systems and providing more resources for patients and doctors to encourage earlier planning for death.
But in order to facilitate and advance this difficult conversation, we must first change the very words we use to discuss cancer.
When the National Cancer Act was signed in 1971, our nation’s political and social will was focused on a “war on cancer.” Our widespread use of this language is rooted in a propagandist history promoting the belief that, with enough resources, this is a conflict we will win. Consequently, victory became defined only by “defeating cancer,” or finding a cure.
A visit to the American Cancer Society website asks you to join the "fight against cancer;" and a majority of public cancer-related media is packed with more war imagery. While the war description of cancer has resulted in unprecedented attention and fundraising for cancer care, research and survivorship, a balance should be reached between these successful efforts and language that is a realistic assessment of what can be accomplished today, for the patient, right now.
Cancer is a unique disease. To take the war analogy further, cancer is not a foreign agent infiltrating our bodies, such as an infection — cancer is a coup d'état, a tumorous growth from within us. One of the great paradoxes of cancer treatment is that targeting cancer inevitably means targeting our own bodies.
Yet because we conflate cancer and conflict, physicians and patients often find themselves in the midst of an unintentional civil war, fighting for life to the very end. We have inadvertently created a culture where death is considered a failure, and life extension equals life.
Words affect perception, and for some patients, a 'cure' is not always an achievable goal.
It’s time we changed our rhetoric. Words affect perception, and for some patients, a “cure” is not always an achievable goal. Choosing words that no longer focus on cancer’s destruction gives patients and physicians the freedom to engage in discussions about other treatments such as palliative care, removing the suspicion that any course other than “fighting to live” somehow means “giving up.”
So how do we make this change? As with most things in medicine, it begins with the patient.
Once faced with a cancer diagnosis, the physician's temptation is to start the patient down a predetermined path of treatment. Instead, we should take a step back before pursuing the details of what to do next. A recommended but not often used script is to first ask the patient: What do you understand about your illness and what do you want to know? Who among your friends and family can provide support? What are your goals in life — both short- and long-term?
And while it creates a sense of camaraderie, we should avoid phrases such as “we will fight this” or offer vague hope. Rather, I caution patients with advanced cancer that therapy may be the life-saving option currently helping them achieve their goals, but there may come a time in the future when additional medical therapy will actually impede their enjoyment of life. This is akin to the technique of framing discussions in a way to hope for the best but prepare for the worst.
Physicians can guide patients through these discussions by involving palliative care specialists, whose role is to improve quality of life through symptomatic and psychosocial support. This support ranges from treating pain, insomnia, and anxiety to addressing spiritual needs and helping patients understand their disease and cope with related stress. Engaging their services soon after a cancer diagnosis has been shown to not only consistently improve survival, but also health literacy and other disease-associated outcomes, such as depression. Studies show that these effects even extend to patient caregivers.
However, a barrier to more use of palliative care is the misconception that palliative care and hospice are one and the same, that accepting palliative care means “surrendering” to the disease. While hospice focuses on end-of-life comfort, palliative care provides support throughout the spectrum of illness, from diagnosis to death. Once this concept is explained, palliative care is often more easily embraced.
How does one address a patient who feels terrified when told to “prepare for the worst?”
The result of having these exchanges and involving palliative care early in the course of the disease is to break the false dichotomy between cure and failure. This strategy broadens the patient’s and physician’s ability to receive and provide care. But these are very difficult conversations and are filled with fear and anxiety. How does one address a patient who feels terrified when told to “prepare for the worst?” It is crucial for a physician to normalize these conversations, perhaps by saying “I discuss this with all my patients who face a serious diagnosis,” and then to provide reassurance that their patient will receive comprehensive medical care, whether it is curative, palliative, or both.
As physicians grow to embrace a more holistic view of cancer treatment, the public discourse surrounding death and disease must also evolve. Online tools such as “Let’s Have Dinner and Talk About Death” are a step in the right direction. Ending the “war on cancer” is another.
Let's stop the talk of battles and instead raise awareness by celebrating the remarkable stories of those who succumbed to cancer and those who are currently living with cancer. As one of my patients eloquently told me, "Death is not a threat but the condition that maximizes my life.” Our medical interventions, while powerful, are not the only way to maximize life. And partnering with my patients to figure out how is the best part of my job.
Isaac Chan, MD, PhD, is a resident in General Internal Medicine at Boston Medical Center.