The Difference Between Information and Understanding: A Founder’s Perspective on Medical Decision-Making

I believe one of the biggest failure points of the U.S. healthcare system is not helping patients understand the consequences of their healthcare decisions.

At the very least, patients should understand a few key things. The first is what happens after the procedure. What does recovery look like? What are the risks? What happens if things don’t go according to plan?

Expected outcomes, potential complications, different recovery scenarios, and the uncertainties around treatment can all have consequences that extend far beyond the procedure itself. Patients should understand what those possibilities could look like in practice: How long might recovery take? What does a less-than-optimal outcome realistically mean? What support might be needed at home, and what burden could that place on the household? Those answers shouldn’t necessarily change the decision, but they can help inform it.

The same is true of cost, marginal benefit, and quality of life. If one treatment costs ten times as much as another but is expected to produce roughly the same result, a patient deserves to know that. And if a more aggressive treatment offers only a modest potential benefit compared with an option that better preserves quality of life, the patient should understand that tradeoff before making a decision.

That broader view of healthcare across a person’s life is core to what we do at Solace. True patient-centered care considers both the clinical realities and what “the best possible outcome” means to the patient. Physicians have a tendency to move quickly through complex information, which can be confusing and intimidating. One primary function of an advocate is working closely between the patient and their providers to make sure the options are understood and the care plan is aligned with the patient’s priorities.

There are a lot of questions patients should ask, and a lot of answers they’re entitled to. But having more information can only equate to being more informed if it’s given in a way patients can clearly comprehend.

Frequently Asked Questions

What is shared decision making in healthcare?

Shared decision-making is when patients and clinicians choose care together, using medical evidence alongside the patient’s goals, values, and preferences.

What questions should I ask my doctor before agreeing to a treatment?

Ask what recovery will look like, what the risks are, and what happens if things don’t go as planned. Also ask what support you would need at home, how the cost and expected benefit compare with other options, and how each option could affect your quality of life.

Can a patient advocate help with medical decision-making?

An advocate can help you organize all the information you’ve been given, prepare questions for your care team, and better understand your options, However, advocates are not medical providers and do not diagnose conditions, recommend treatments, or make medical decisions.