The cancer had spread throughout her body. Fast-growing metastases had invaded her brain, lungs and bones despite multiple rounds of chemotherapy and radiation treatments. She spent the last few weeks of her life "trying everything," all the while explicitly acknowledging that "everything" would do "nothing" to make her better.
She was right.
The so-called treatments sapped her energy and aliveness, depleting her capacity to think and interact with loved ones. She gagged at the mere sight of food, and her breathing became painful and laborious. Her hair gone, her skin peeling off at various places, her eyes dulled -- when she died, she was barely recognizable as her former self.
"She" was a doctor, someone I'd known as a friend. Once, she jokingly threatened to tattoo "No CPR" across her chest to ward off aggressive medical treatments while her life was ending. Like me, she'd seen too many patients die miserably in hospitals, smothered to death by ineffective medical treatments and technologies. And "that," we emphatically agreed, was not going to happen to us.
But it did, to her. And to this day, I often wonder why and how her die-hard convictions and planning for a gentle death changed so abruptly and dramatically. With haunting clarity, I recall her uplifted hands and the "who knows?" expression across her face in responding to my questions about those changes weeks before her death.
In general, my friend's story is not unusual. We've been aware that people frequently change their preferences about end-of-life care as death gets closer. We now understand how hard it is for people to predict how they will respond to future hypothetical states of illness. How impossible it is for them to accurately imagine what they'll want and endure in a future condition or terminal state they've not yet experienced?
And yet, as a doctor, my friend had formulated definite ideas about her end-of-life care based upon repeated and intimate witnessing of patients dying. Short of dying herself, she had learned about death and the limits of so-called life-saving medical interventions as much as anyone could. Why, in the end, did she change her mind?
Much current discussion has focused on whether doctors die differently because of their special knowledge about death and medical practice. Several recent articles suggest that doctors may be able to make more realistic choices for themselves that minimize their suffering, disburden them of ineffective interventions, and maximize their remaining quality of life.
However, those suggestions remain largely anecdotal. No real evidence exists to help us determine whether doctors actually tend to "go gently."
We do know that, like my friend, doctors often say they would prefer to die without medical interventions. For example, a 2003 study revealed that a majority (70 percent or more) of older doctors surveyed by John Hopkins researchers would prefer to die without CPR, mechanical ventilation, kidney dialysis, chemotherapy, surgery, invasive testing and feeding tubes.
More recently, a study about physicians' attitudes toward end-of-life medical planning was published last week by Stanford researchers in the online journal PLOS ONE. Widely cited in mainstream media, the study indicated that more than 88 percent of 1,081 surveyed doctors said they would reject CPR for themselves and choose the following (wordy) option: "I do not want my life to be prolonged if the likely risks and burdens of treatment would outweigh the expected benefits, or if I become unconscious and, to a realistic degree of medical certainty, I will not regain consciousness, or if I have an incurable and irreversible condition that will result in my death."
Unfortunately, public media often misinterpreted this finding. Some construed it as proof that doctors were dying differently; one headline read: "How doctors die (it's not like the rest of us)." Even the lead author of the Stanford study wrote: "Our study raises questions about why doctors continue to provide high-intensity care for terminally ill patients but personally forego such care for themselves at the end of life."
Obviously, we can't claim that those (living) doctors had forgone end-of-life interventions. And we simply don't know whether they will actually die in circumstances reflecting their currently stated preferences.
In fact, it remains unknown whether doctors' preferences are honored any differently than patients' preferences -- even if legally documented in living wills or other advance directives.
Indeed, research indicates that, like doctors, a majority of patients prefer to die at home, and upwards of 80 percent of patient populations wish to avoid hospitalizations and high-intensity care. Still, we know that patients' wishes are regularly altered or over-ridden and their end-of-life care is not necessarily what they had wanted or envisioned.
For example, the CDC reported that, while most seniors preferred to die at home, less than a third did so. Instead, the vast majority (69 percent) of people aged 85 and older died in hospitals, nursing homes or other long-term care facilities.
In the end, it's deeply problematic that we physicians so often provide treatments to terminally ill patients that most of us would choose to reject for ourselves (at least in theory). It's critical to understand why this occurs and whether physicians -- like their patients --- are subject to the same fate once becoming the terminally ill patients of their own doctors.
People die only once, and it should occur on their own terms, with clear understanding of what will help or hinder their goals. That's why it's important to be clear about what we know -- and don't know -- about end-of-life experience and the limits of modern medicine. People are dying to know.
Kate Scannell is a Bay Area physician and the author, most recently, of "Flood Stage."