September 4, 2019

As a palliative care physician, Richard Leiter has "struggled with the complex realities of dying at home"—and the issue took a personal turn for him recently as he navigated the end of his grandmother's life, he writes in the New York Times' "Well."

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Where patients prefer to die

Leiter has asked hundreds of patients where they want to die, and he has come to expect that most will say they want to die at home.

"It is emotionally and intellectually compelling that patients should die in their own homes, surrounded by loved ones in a comfortable, familiar environment," Leiter writes. He explains, "For patients dying of end-stage disease, be it cancer, heart disease or something else, even the best hospitals are unlikely to be able to 'fix' the underlying problem."

And "[w]hile there are still those who subscribe to the idea that excellent health care demands doing everything possible to prolong a life, many doctors and patients now prefer a less intensive approach when time is short," such as hospice and dying at home, Leiter writes. In fact, Leiter writes, palliative care providers today often view cases in which a dying patients returns to the hospital "as failures."

"We wonder what the critical gap was that led the family to call 911 or come to the emergency department," Leiter writes. "Was the patient's pain uncontrolled? Were medications unavailable? Did the family panic? Something must have gone wrong."

Is home really the best place to die?

But often, Leiter "wonder[s] … if we've adopted the wrong approach."

While society has placed an emphasis on dying at home, there are many unacknowledged downsides, Leiter writes. For instance, most people who want to care for their dying family members are unaware of the physical and emotional toll of caregiving, Leiter explains. "Unless a family has the significant resources necessary to hire aides or nurses, informal caregivers become responsible for nearly everything—from feeding to bathing to toileting," he writes.

Similarly, patients in the end-stage of disease often experience painful symptoms that are difficult to manage at home, Leiter writes.

"As a doctor who regularly asks my patients where they 'want' to die, I often worry about what this will look like if they choose home," Leiter writes. "In these situations, I am caught between the passionate rhetoric of my field, the spoken and unspoken wishes of my patients, and my clinical judgment."

His grandmother's death

The dilemma became all the more real for Leiter earlier this year when his 96-year-old grandmother was found unresponsive in her apartment, where she lived with the support of aides.

The news of her condition left Leiter at a crossroads. "My grandmother's health and cognition had been declining over the past few months, but her quality of life was still good," he writes. "In that moment, though, my clinical intuition was that she was dying. As a palliative care physician, wasn't it now my job to protect my grandmother from spending what could be her final hours in a hospital? On the other hand, without seeing her how could I be sure that whatever was happening could not be fixed?"

Leiter's grandmother ultimately was taken to the hospital, which Leiter writes, "was the right decision." At the ED, the doctor told Leiter that his grandmother was dying and recommended they "focus on ensuring that the short time she had left was as comfortable as possible." His grandmother died the next morning, "in the hospital and at peace," he writes.

The problem with how we discuss end-of-life care

Leiter writes that his grandmother's experience made him realize that clinicians need to focus not simply on where patients die, but how they die.

"When we view all deaths in the hospital as failures, we risk neglecting a critical opportunity to improve the dying experience," Leiter writes. "Clinicians across medicine should elicit and, whenever possible, honor their patients' preferences for where they want to die," Leiter writes. "At the same time, we need to acknowledge our own uncertainties and be honest—with ourselves and our patients—about the difficult trade-offs these choices entail" (Leiter, "Well," New York Times, 9/3).

Next, get URMC's end-of-life conversation prompts

When it comes to end-of-life care, most organizations struggle to meet patients' needs. In a recent poll, 87% of Americans age 65 and older said that they believe their doctor should discuss end-of-life issues with their patients; however, only 27% of those polled had actually discussed these issues with their doctor.

Download URMC's conversation prompts to start improving end-of-life care for patients.

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