Mapping the end  

By Kaishauna Guidry, MD, HMDC, Mourning Dove Medical 

During residency, I admitted a man with ALS after a fall ended his ability to walk. His speech was deteriorating, and breathing was becoming compromised. The disease was progressing rapidly. 

The patient’s family believed he would soon return home and were planning renovations to make the house wheelchair accessible. Yet at the bedside, the reality was unmistakable. And the patient seemed to know that time his time was short. I believe many patients know. Often, they’re simply waiting for the clinician to confirm what they’re already feeling. 

Sometimes we avoid conversations about the end of life because we fear extinguishing hope. But not discussing the known trajectory of disease can leave patients and families navigating one of life’s most difficult seasons without a map.  

Lessons from hospice practice 

As an internal medicine-trained hospice physician, I often meet patients whose health has rapidly deteriorated, and they’ve quickly transitioned into hospice care. When I review their medical records to confirm terminal illness, I often see a pattern of recurrent hospitalizations, escalating interventions, and steady functional decline. Every available treatment has been attempted, yet the patient continues to deteriorate. I often find myself wondering: Did anyone explain the known trajectory of the terminal disease? 

When my hospice interdisciplinary team holds our first care conference with patients and families, it often seems like the first time that patients and families clearly hear where things stand. These conversations can be transformative. Families shift from crisis management to meaningful presence. Care begins to align with what matters most to the patient. 

But I often leave those meetings asking a difficult question: How might things have been different if they’d known sooner? I don’t believe clinicians are withholding information intentionally. Yet our training focuses heavily on diagnosis and treatment, and less on having challenging conversations about the predictable course of terminal illness. The trajectory of illness, however, is vital information. It allows patients and families to prioritize their time, relationships, and resources before crisis forces decisions. 

“The good physician treats the disease; the great physician treats the patient who has the disease.”—William Osler 

Hospice pioneer Barbara Karnes reminded me of Osler’s words during the World Hospice and Palliative Care Day podcast: that we must shift from treating the disease to treating the person who has the disease. That shift doesn’t remove hope—it restores autonomy. 

Goal-concordant care 

When patients understand the trajectory of illness, they can make deeply personal decisions with their loved ones. They can clarify goals of care, update advance directives, and decide how they want to spend their remaining time—how they want to live.  And it may not be bouncing in and out of the hospital and nursing homes. We call this goal-concordant care.  

Healthcare roadmaps at the end of life 

But patients can’t make those choices without insight from the clinician. That’s why I advocate for a healthcare roadmap at the end of life (click here to listen to my podcast on this topic). In my community, I work with geriatric care managers and home care agencies to help families navigate the late stages of life. A healthcare roadmap outlines functional status, nutrition, cognition, hospitalizations, diagnoses, and medications contributing to clinical decline. This information helps families plan for the care their loved one will need. Without that roadmap, families often feel blindsided.  

Physicians don’t need to predict the exact moment of death to guide patients through the late stages of life. What we can do is communicate the trajectory of disease with clarity and compassion. And finally, a healthcare roadmap at the end of life doesn’t signal the end of care. It signals the beginning of care aligned with what matters most to patients and families.  

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.