Off the Chart: Candid Conversations in Health Care

I usually write about software, systems, and career strategy - things that run on logic, feedback loops, and reasonably clear documentation. This post is different.

Over the past several months, a loved one has been dealing with a serious and complex medical issue. Without going into details, I'll just say that it's involved nearly every touchpoint in the Canadian health care system: emergency rooms, hospital stays, numerous diagnostic tests, specialists, telehealth, family doctors, and even surgery.

As a technologist, I'm used to learning systems inside and out. I like to make informed decisions based on clear information. This involves weighing tradeoffs, assessing risks, and choosing the best path forward. But navigating the medical system as a patient advocate has felt less like debugging a system and more like trying to read tea leaves. The hardest part hasn't been the complexity, it's been the communication.

Medical Communication

At almost every step of the process, I've found myself asking questions that don't get clear answers. Not because the clinicians are rude or dismissive (although on occasion this has happened), many have been kind and well-intentioned. But the way they communicate is often deeply unsatisfying and leaves me feeling no further informed as before the conversation began.

For example, we were once weighing whether to pursue a less invasive diagnostic test before considering a more invasive and risky surgical procedure. When asked about the less invasive option, the clinician acknowledged that it existed - but said it was hard to get, involved a lot of paperwork, and wasn't commonly done. I was attempting to get at something like: Are you not recommending it because it's not useful as a diagnostic tool? Or because it's a bureaucratic hassle to get approval? If the test were as easy to order as an ultrasound, would you view it as worthwhile? But I wasn't able to get a straight answer.

That interaction is far from unique. Again and again, I've encountered hedging, and vague reassurances, but rarely direct, transparent reasoning. It often feels like I'm talking to someone who knows the answer, but is afraid to say it plainly.

Better Answers from an AI?

I've found myself turning to ChatGPT for clearer answers to medical questions, not because it’s always correct, but because it communicates openly, without the usual hesitations.

Obviously, it doesn’t replace medical expertise. But it has one key advantage: it’s not afraid to be imperfect. It doesn’t have a license to protect or a career on the line. It’s not practicing defensive medicine or navigating institutional liability. It just provides the answers, with the usual disclaimer that "AI can make mistakes."

And unlike some clinicians I’ve encountered, it never dismisses my questions as naïve or irrelevant. It doesn't respond with condescension or veiled annoyance. It takes every query seriously, whether I'm asking about a rare side effect or if it's possible to take public transit home after a procedure. And when pressed for evidence, it offers links to published research, clinical trials, numerical risk estimates, and can even help apply that data to a decision-making framework.

That’s what I wish I could get from doctors. Not infallibility. Not guarantees. Just a clear, respectful explanation of how they’re thinking. What factors they’re weighing. What’s real versus what’s just administrative policy or political constraint.

Which got me thinking: why doesn’t medicine have an equivalent of "off the record"?

Journalism: Off The Record

In journalism, sources and reporters can use the convention of off the record to speak more freely. When a conversation is off the record, the journalist agrees not to publish or attribute what the source says. It creates a space for honesty, for sharing context, personal opinions, or sensitive background without fear of consequence.

This convention isn't legally binding, but is culturally understood and respected. It allows journalists and sources to step outside the formal script and get to the heart of things.

Health Care: Off The Chart

What if health care had a similar convention? Let’s call it "Off the Chart".

"Off the Chart" would be a temporary, voluntary agreement between a clinician and a patient (or their advocate) to step outside the formal medical record and have a plainspoken, human-to-human conversation.

It wouldn’t be official advice, part of medical records, or consent. Instead, it would be a space to ask, "What do you really think?"

How It Could Work

1. Mutual Agreement The patient might say:

   "Can we go off the chart for a minute?"

   The clinician can agree, understanding that this is a signal to temporarily set aside legalese, EMR (Electronic Medical Record) notes, and institutional protocol.

2. Informal, Candid Conversation In "Off the Chart" mode, the clinician might say:

   • "If I'm being honest, that test could help, but the system makes it nearly impossible to get unless you check certain boxes."
   • "I'm not saying this officially, but in most cases like this, people recover without surgery."
   • "If this were my child, I'd push harder for a second opinion."
   • "Officially, this treatment is recommended for your condition, but honestly, it often doesn’t improve survival, and the side effects can be really tough to handle."

3. Return to Clinical Mode After the candid moment, the conversation returns to standard medical practice - documentation, consent, and formal recommendations.

This isn't about replacing medical advice or lowering standards. It's about adding a communication tool that acknowledges reality: Patients (and their advocates) are trying to make huge, life-altering decisions while feeling like they don't have the full picture.

Benefits

If adopted, an "Off the Chart" convention could:

• Build trust – by allowing clinicians to speak more openly, patients may feel more respected and included.
• Acknowledge complexity – by creating space to discuss factors like bureaucracy, policy, or personal judgment that aren’t captured in clinical guidelines.
• Reduce frustration – by helping patients better understand the reasoning behind recommendations or limitations.
• Support better decision-making – by giving patients clearer insight into tradeoffs, risks, and real-world constraints.

Challenges

"Off the Chart" wouldn't be legally binding or risk-free. There would need to be:

• Clarity about its boundaries.
• Training and support for clinicians to know how to use it responsibly.
• Education for patients and advocates about what it means.
• Recognition that it may not be possible in all settings.

Just like "Off the Record" became a widely accepted journalistic tool, "Off the Chart" could become a small phrase that opens big doors for improved communication in health care.

Closing Thoughts

Being sick, or watching someone you love be sick, is already hard enough. But being left in the dark, unable to get straight answers or understand the options, makes it infinitely harder.

I don't expect medicine to be perfect. But I do believe it can be more human. And sometimes, all that takes is a conversation that's just a little bit off the chart.