“If cancer treatments won’t help, how am I going to fight this?”
The sheer emotion in this inquiry from a patient could fill an empty room. It’s the distress of an irreconcilable paradox in care — a medical stalemate in a battle, void of victory. The perception is that the only remaining path forward is to “give up and let cancer win.”
Conceptualizing treatment as a violent conquest has birthed a difficult impasse in cancer care. Medicine needs to stop sending patients to war.
Fight language creates a dangerous false narrative, unwittingly labeling the diagnosed as combatants. Though the intention may be to empower an individual along their treatment journey, patients are inadvertently predisposed to feelings of failure, a sense of despair, abandonment or hopelessness.
Of particular concern is when cancer is a life-limiting diagnosis. How can we frame treatment of a noncurative disease as a battle when, from all, these patients are destined to “lose”?
The misplacement of personal responsibility for an illness trajectory that is largely indiscriminate is both isolating and unfair. While legitimate emotions of fear or the hardships of illness deserve to be validated, the deafening cries to “fight” may overwhelm, trivialize or silence them.
Our patients deserve better.
The language of cancer care communication dramatically shapes the lived experience of treatment. As the practice of medicine shifts towards a person-centered model with a mission to care for individuals, not illnesses, clinicians must try to incorporate the unique values and preferences of each person into their treatment plans.
Person-centered care requires person-centered language, or “life language.” Communication using this approach focuses on enhancing a patient’s lived experience in the context of a disease that seeks to limit it either in duration, quality or both.
Life language embraces the concept of individuality in patient care. It advocates for the exploration of a patient’s goals beyond the over-simplified objective of survival. Life language expands the boundaries of prognosis discussions to incorporate both how long one lives and how well one lives.
In my conversations with patients, the focal point of our communication is their life, not their cancer. We review treatment plans that seek to medicalize their lives in a way that supports their person-centered goals and avoids perilous pathways that may detract from them. We add value-based goals to treatment plans by making family, friends and travel a priority. Maintenance or restoration of quality, functional independence and dignity are also quite common themes.
We discuss how controlling pain can lead to better days and explore the balance of being both patient and person, particularly as one role increasingly tries to limit the other. We review the potential rewards or unacceptable trade-offs of cancer drug therapies or major surgeries that may be difficult to endure or, alternatively, too dangerous to pursue.
These are challenging discussions that may not get easier, but it is at this delicate crossroads of communication that life language identifies a patient’s needs and clinicians are appropriately equipped to help them face the future.
As I listen to the stories of lives lived before a cancer diagnosis, it is a reminder that clinicians must ultimately help patients continue the experience of life after a cancer diagnosis. This is of even greater importance when cancer is not curable. Helping patients live their fullest lives with illness is a collaborative feat, a convergence of the highly clinical and the deeply personal. Doctors know a lot about illness, while our patients know about their lives. I always encourage patients to become active participants in their care as opposed to passive recipients.
Conversations about clinical care are often guided by laboratory and imaging tests, but context is easily lost in a sea of medical investigations. The end result is that we may fixate on the appropriately worrying question of whether cancer is progressing despite treatment, but inadvertently miss the opportunity to address whether “life” is progressing despite cancer.
The treatment journey can be fraught with emotional, physical, spiritual and social stressors, with burdens from both illness and proposed therapies. Each of these threatens the experience of life in its own unique way. Our patients need all the support they can get. They need to be heard and we need to listen.
This is no time to send them off to war.