Samuel Edusa, MD. "An AI Generated Sketch of a Dying Man." 2026, Digital artwork generated using Google Gemini. Personal collection.

The brother was reclined in the chair next to the bed in room 412, a blanket pulled over his legs, resting comfortably. He had been there for hours. Days, maybe. He watched everything I did with the kind of quiet attention you give someone you do not fully trust. His brother, my patient, lay motionless beneath a thin hospital blanket, seventy-some pounds of a man who had once been much larger, his cheekbones sharp enough to cast shadows under the fluorescent lights. Advanced lung malignancy. Cachectic to the point where his arms looked like they could snap. Non-verbal for days.

The family had brought him in from home. They had been trying alternative treatments after declining the biopsy that pulmonology had recommended and the chemotherapy that oncology had offered. The oncologist, in fairness, had maintained optimism. Curative intent was discussed. Options were presented. And the family had listened and then walked the other way.

I do not judge that decision. I understand it more now than I did that week.

The brother held the power of attorney. He was polite, careful with his words, and immovable. When I brought up goals of care, gently I thought, he looked at me with an expression I have since learned to read better than I could then. It was not confusion. It was not denial. It was something closer to resolve. He did not want his brother made DNR. He did not want to talk about comfort care. He did not want to hear what I was really saying, which was that this man was dying and that the most loving thing we could do was let him do it in peace.

A few days later, the patient coded. The brother was not there. He was at home.

The ICU team ran the code. They did chest compressions on a man who weighed seventy pounds, whose ribs you could see shifting under the force. They called the brother. Even over the phone, even from home, he held on. He asked the team to continue compressions. Still hanging onto hope.

The team ultimately called the code after about ten minutes.

I heard about it the next day. And I could not stop thinking about it. Not just the death, but the distance between what we thought we were offering that family and what they actually heard from us.

That same week, three rooms down, I was managing a white woman in her sixties with a thymic malignancy that had metastasized. She had fallen and fractured her hip. When she came in, she told the orthopedic team exactly what she wanted: fix the fracture with a nail so she could spend her last days walking, not in a wheelchair. That was it. She was not asking them to cure her cancer. She was asking them to let her be on her feet for whatever time she had left. Orthopedics took her to the OR, nailed the intertrochanteric fracture, and post-op she was back on our service.

When I walked in for rounds, she was sitting up in bed, reading. She knew her cancer was not curable. She had made her peace with it. She wanted hospice. She wanted to be in her own house. She had her advance directive in place, had named her daughter as her healthcare proxy, and had specific wishes about what she did and did not want done if things went south.

The whole conversation took ten minutes. She thanked me. I put in the hospice referral. She went home two days later.

I kept thinking about those two patients for weeks. Not because one made the right decision and the other made the wrong one. I do not believe that is the correct framing. Both families loved the person in that bed. Both were facing something unbearable. But the paths they took could not have been more different, and the outcomes, the suffering involved, the quality of the dying, were not the same.

The easy explanation is culture. You hear it in the break room, in the hallways, sometimes even in the literature: African-American families "want everything done." They are more religious. They do not believe in giving up. These are the shorthands we reach for when a goals-of-care conversation does not go the way we expected.

But the more I sat with what happened in room 412, the more those explanations felt hollow.

The brother did not refuse to let go because he did not understand. He refused because he did not trust that the system offering to let his brother die peacefully was the same system that had ever offered his brother a fair chance at living.

When the oncologist talked about curative therapy, the family heard optimism, and then they heard it taken away. When I talked about comfort care, the brother heard a doctor telling him it was time to stop fighting for a Black man's life. That is not what I said. But I am increasingly certain it is what he heard. And given the history, not the abstract textbook history but the lived history of Black patients in the American South, he was not irrational to hear it that way.

The Tuskegee study did not end in 1972. Its consequences are still in the room every time a Black family faces a medical team asking them to accept that nothing more can be done. Every time a provider suggests discontinuing aggressive treatment, there is a shadow in that conversation that most of us, most white and non-Black providers, do not see. The brother in room 412 saw it.

I started reading. Not the surface-level papers about advance directive completion rates. Those numbers I already knew. African-Americans complete advance directives at about half the rate of white patients. That gap has not closed in twenty years. I started reading the qualitative work. The interviews with Black families who lost someone in the ICU. The focus groups with African-American churchgoers about end-of-life care. The studies on implicit bias in pain management. The economics research showing that the Tuskegee study reduced Black men's use of outpatient physicians by 22 percent. Not the men in the study, but Black men across the South who heard about it. Population-level mistrust. Generational trauma with measurable health consequences.

The more I read, the clearer something became: the existing systematic reviews, and there are several good ones, all document the same barriers. Mistrust. Religiosity. Family-centered decision-making. Access. Health literacy. But none of them tell the clinician standing at the bedside what to do differently for the patient in front of them. They describe the problem. They do not hand you a tool.

And that is the gap I decided to try to fill.

I conducted my own systematic review. Fifty-eight studies, 2010 to 2026, covering advance care planning disparities, clinical outcome disparities, provider implicit bias, historical context, and interventions. The evidence is overwhelming and consistent. But the thing that kept nagging me was operational: how do you take what these 58 studies say and turn it into something a resident or an attending can actually use at the point of care, in real time, with a real patient?

The answer I came up with is a tool I am calling the ACP-Equity Risk Index, the ACP-ERI. It is a 25-item clinician-administered instrument that does three things no existing tool does at the same time. First, it calculates a risk score for ACP non-completion based on weighted factors from the evidence: trust, access barriers, cultural factors, clinical urgency, health literacy. Second, it identifies which barrier domains are dominant for a given patient, because a patient whose primary barrier is mistrust needs a fundamentally different approach than a patient whose primary barrier is transportation. Third, it generates tailored intervention guidance. Specific conversation starters, specific clinical actions, specific evidence citations, all matched to whatever barriers are driving that particular patient's risk.

There is an AI component. The tool generates culturally adapted conversation openers based on the dominant barrier profile. When a patient scores high on mistrust, the tool produces a script that opens with explicit acknowledgment of historical medical racism. Not an apology, but a recognition. When the cultural domain is dominant, the script invites family participation and integrates spiritual values. These are not generic platitudes. They are grounded in what the qualitative literature says African-American patients actually want to hear from their doctors.

I built a working prototype. It runs on a phone or a tablet. A clinician can complete the assessment in three to five minutes and get immediate guidance. It generates a documentation template you can paste into the chart and bill under the ACP CPT codes.

The ACP-ERI in Action

You can try the live tool: ACP ERI Tool

It is not validated yet. That is the next step, a pilot study at SGMC Health, here in Valdosta, with 200 patients. I want to know whether the tool predicts ACP completion, whether clinicians find it usable, and whether patients whose providers use it actually complete advance directives at higher rates. The IRB protocol is being submitted.

I think about the brother from room 412 often. I think about what might have been different if I had walked into that room with a structured understanding of what was driving his resistance. Not resistance to his brother's death, but resistance to a system he had no reason to trust. If I had started the conversation not with "Have you thought about goals of care?" but with "I know the medical system has not always done right by people who look like your brother, and I want you to know I take that seriously."

Would it have changed the outcome? Maybe not. Maybe the brother still would have wanted everything done. That is his right, and I respect it. But I would have been meeting him where he actually was, instead of where I assumed he was. And I think the quality of that encounter, the humanity of it, would have been different for both of us.

The woman with the thymic malignancy did not need me to bridge a gap. She had already crossed it. She had an advance directive, a proxy, a plan. The system had worked for her the way it is supposed to work for everyone. The question that I cannot let go of is why it works for some patients and not others, and what I can do, what any of us can do, to close that gap.

That is what the ACP-ERI is for. Not to replace the human conversation. To make sure the human conversation actually reaches the human being in front of you.

Minor changes have been made to clinical descriptions in this essay to protect the privacy of the patients and their families.