Raya Elfadel Kheirbek is a professor of medicine and chief of the division of palliative medicine and geriatrics at the University of Maryland School of Medicine.

We plan our funerals. But the act of dying is what needs attention.We should tell our loved ones where we draw the line when life is no longer worth enduring

He kept everything in a neat folder. The papers inside recorded decisions he
had made: the cemetery plot purchased years earlier; the casket chosen
down to the satin lining; a printed program for a funeral service that had not
yet taken place. There was even a draft of his eulogy, measured,
unmistakably in his own voice. He had selected the music and written the
closing lines others would read when he was gone.

Like this late patient of mine, Americans often plan the rituals to follow their
death but much less often plan the dying itself. And that gap has real
consequences. This is the quiet dissonance I frequently encounter as a
clinician caring for patients with serious and advanced illness. People arrive having prepared meticulously for the aftermath of death, but the path to that death remains unmarked.

Surveys show a striking imbalance. Many Americans report having planned
aspects of their funerals, yet at least 40 percent of Medicare beneficiaries
do not have a documented advance directive for end-of-life medical care — a gap that has persisted for years, despite sustained national attention since the landmark 2015 Dying in America report by the National Academy of Medicine.

The limitations of current tools compound the problem. Advance directives
and “Do Not Resuscitate” forms are essential but blunt. They rarely capture
the personal nuances that matter most: whether a patient is willing to endure significant pain or intensive interventions to reach a grandchild’s birth, wedding or graduation; what quality of life still feels worth fighting for; or how they envision their final days.

As a result, the hardest decisions often fall to families in crisis. The room
changes. The lighting grows harsher. Machines arrive, and loved ones are
asked to speak for someone who can’t — frequently defaulting to aggressive care, even when it may not be effective. Guilt and fear of “letting go” weigh heavily; no one wants to feel responsible for shortening a life. It is easier to choose music than to start these difficult talks. The rituals after death feel public and familiar; the process of dying is intimate, uncertain and exposing. It demands specificity: Whom do you trust to make decisions on your behalf? At what point does more time become too much time? These are questions too seldom confronted early or comfortably.

Many people hope to die peacefully in their sleep, yet substantial suffering
precedes death for a large number. This mismatch makes the need for
honest dialogue even more urgent.

A 2025 study in JAMA Internal Medicine tested a structured intervention by
primary care physicians to boost advance care planning documentation.
Though it modestly increased completion rates, it was unexpectedly
associated with more potentially aggressive treatments at the end of life in
some patients. At the same time, a major recent research path shows real
promise: When trained clinicians take the time to understand what matters
most to patients and align care with those personal priorities, patients
experience less treatment burden and greater goal-concordant care. This
finding underscores a critical truth: Simply completing documents is not
enough. What truly matters is the quality and depth of those exchanges we
have with the people we love.

A woman with advanced cancer whose care I was involved with expressed
plainly that she wanted to go home for hospice treatment in her final days.
She did not want to die amid intensive care unit alarms and machines. She
wanted her daughter nearby, a window open and the ordinary rhythm of
home. Her care later unfolded along the lines she had drawn. Other patients draw different lines. A grandfather said he would tolerate whatever was necessary to attend his granddaughter’s wedding in six weeks. “After that,” he said, “let nature take its course.”

Both wishes guided our team when crises came, sparing two families the
anguish of guessing. The most powerful thing many of us can do is also one of the hardest: tell the people we love what makes life worth living, what matters most to us and where we draw the line when life is no longer worth enduring.

When the patient with the folder full of his funeral wishes died, his plans
were carried out exactly as he intended. Yet even as he was being treated,
the deeper discussion about how he wanted to live his final days never fully took place. He deteriorated quickly, and the decisions fell instead to a
system skilled at prolonging life and far less practiced at honoring how a life wishes to end.

There is a difference between preparing for death and preparing to die. One is visible and administrative. The other is quieter, harder to name and too often left undone. We can all do better by bringing the same care and
attention to both