Embracing Death Talk to Plan for the End of Life

In June 2016, I was diagnosed with glioblastoma, or GBM, an aggressive form of brain cancer.

Patients with GBM face the cytotoxic, or cell-killing, therapies common to many cancers, including chemotherapy and radiation. They also face unique challenges because their tumors are located in the brain.

Several neurological disorders can accompany brain tumors, whether cancerous or not. These include tumor-associated epilepsy, personality changes, migraines, motor and sensory impairment, vision loss, memory problems and neurological fatigue.

All of this is to say that GBM is a life-limiting disease.

As the disease progresses, a patient steadily loses executive function. In the final stage, they may lose the ability to communicate beyond themselves.

A central part of my identity is grounded in my ability to communicate effectively with others through conversation, writing and reading.

A version of me that could no longer engage with others in these ways would not authentically reflect the values I hold close.

Medical interventions that extended my life without helping preserve my agency and sense of identity would be inconsistent with my definition of a good death.

A diagnosis of advanced illness, the interventions used to manage symptoms and the settings where medical care occurs can shift the locus of control, a person’s belief that they can influence the outcome of events, away from the patient.

Patients are often caught between protocols and policies, with too little regard for their personal identities or roles in shaping a plan of care.

Telling our stories to one another, to the people in our lives and to our clinicians allows us to reclaim our agency and clarify the values that matter most.

Storytelling helps patients recover a measure of autonomy. It restores the identity of the patient as a person, rather than simply a disease to be treated.

Taking this Oslerian imperative is especially important for people living with diseases for which curative treatments are ineffective or do not yet exist, as is often the case with advanced illness.

Aligning agency with identity is integral to advance care planning. Every member of a care team must actively work to close the gap between the medical actions performed and the values held by the patient.

Any inconsistency between those actions and values may prevent a good death, the goal of thoughtful end-of-life planning and care.

Reconstructing patient experiences through storytelling is also an effective way to process complicated emotions and build a supportive network of people who can endure the journey alongside us.

Care partners may help with immediate needs such as preparing food, dressing, toileting and other activities of daily living.

They also provide psychosocial support when our failing bodies create existential questions about purpose, identity, legacy and what it means to live and die well.

The American conversation, writ large, is missing an appreciation for what I call “death talk.”

I also worry that when death is discussed, we mistakenly treat the preparation of legal documents as a substitute for the values-informed, narrative-driven conversations I have in mind.

Confusion arises when we conflate legal documents, such as an advance directive or Physician Orders for Life-Sustaining Treatment, with the conversations required to create them.

Advance planning is most effective when it begins soon after diagnosis and includes an ongoing conversation about values, priorities, concern for loved ones and wishes for our final minutes, hours, days or weeks.

My goal in bringing death out of the shadows of taboo is not simply to ensure that every American has an advance directive on file, though that would not be a bad outcome.

My support for end-of-life planning and care is fundamentally about encouraging dialogue around death.

The outcome of death talk is not only the preparation of documents.

Through empathetic listening, death talk reveals the life of a patient in rich and meaningful ways. It helps identify the values that should guide their care.

With a clear understanding of what matters most to a person, the orders contained in legal documents can closely align medical actions with patient values.

Advance care planning should elevate the conversation, not merely its products or outcomes.

My own advance planning conversation began during my first consultation with my neurosurgeon.

I stated plainly, “I am ready to spend my life in a wheelchair so long as I can read a book while doing so.”

The remark was unrehearsed and made without much deliberation, but it expressed a subconscious desire to articulate the values that continue to be shaped through ongoing conversations with my care team.

Two years after my diagnosis, I celebrate this milestone of survivorship.

I also recognize the opportunity to tell my story as an example of the kind of death talk we should embrace rather than fear.