Talking About Death Helps Plan For The End Of Life

“The outcome of death talk is that we reveal the life of a patient in robust ways through empathetic listening that promotes the identification of patient values.”

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 therapy. These patients also face unique obstacles because their tumors are located in the brain.

Several neurological disorders can accompany brain tumors, whether cancerous or not, including tumor-associated epilepsy, personality changes, migraines, motor and sensory impairment, visual impairment, 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, a patient may lose the ability to communicate with others.

A centerpiece of my personal identity is my ability to communicate effectively with others through conversation, writing, and reading. The “me” who is unable to engage with others through these avenues would not be an authentic representation of the values I hold close. Interventions intended to extend my life without helping preserve my agency and sense of identity would be incongruous with my definition of a “good death.”

The diagnosis of an advanced illness, the medical interventions ordered to manage symptoms, and the settings in which medicine is practiced can move 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 little regard for their personal identities or roles in shaping a plan of care. Telling our stories to one another, to our social circles, and to our clinicians enables us, as patients, to reclaim our agency and make clear the values that matter most. In short, storytelling allows patients to recover a degree of autonomy and restores the identity of the patient as a person, rather than simply a disease to be treated.

Following this “Oslerian imperative” is especially important for patients with diseases for which curative therapies are ineffective or have not yet been developed, as is often the case with advanced illness. Aligning agency with identity is integral to advance care planning, in which 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 actions and values may prevent a “good death,” the goal of thoughtful end-of-life planning and care.

Reconstructing patient experiences through storytelling is an effective way to process complicated emotions and establish a supportive network of partners who can endure the journey alongside us. Care partners can help with a range of immediate needs, including food preparation, dressing, toileting, and other activities of daily living. They can also provide psychosocial support when our failing bodies present existential questions about purpose, personal identity, legacy, and living and dying 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 death talk 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 held to produce them. Advance planning is most effective when it begins soon after diagnosis and includes an ongoing conversation about values, priorities, considerations for our loved ones, and wishes for our final minutes, hours, days, or weeks.

My aim 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 result. My support for end-of-life planning and care is fundamentally about promoting 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 and helps identify the values that should guide their care. With a clear understanding of what matters most to the patient, the orders contained in legal documents can closely align medical actions with patient values. Advance care planning should elevate the conversation, rather than only its products or outcomes.

My advance planning conversation began during my first consultation with my neurosurgeon, when I stated plainly, “I am ready to spend my life in a wheelchair so long as I can read a book while doing so.” Although unrehearsed and made without deliberation, this remark reflected my subconscious desire to express values that continue to be shaped through ongoing conversations with my care team. Two years after my diagnosis, I celebrate this milestone of survivorship and recognize the opportunity to tell my story as an example of the kind of death talk we should embrace rather than fear.