It’s truly a dilemma for the doctor. The patient’s test results are back and the news isn’t good. But it’s Friday afternoon and there’s a decision to make: Call the patient now or wait until Monday?
Dr. Lucy Hornstein, a family practice physician who blogs at Musings of a Dinosaur, wrestled recently with this question: “Here’s how I looked at it: either the patient got to spend the weekend not knowing, or knowing the worst but not being able to do anything about it for three long days. I elected not to ruin the weekend.”
If she had been on the receiving end of bad news, her own preference would have been to wait until Monday, she reasons. But she still wonders if she made the right decision for her patient, and asks her readers, “What would you have done?”
Some said it was the right call. Others weren’t so sure, however. One of the commenters summed it up this way: “At first I thought I’d do what you did, but then I thought that the decision probably needs to be based on who the patient is and how that person deals with things.”
One of the areas in which patient-centered care often stumbles is exactly these situations. We know what we would want so we conclude – no, wait, we assume – it’s probably what the patient wants too.
Applying our own filter to other people’s likes, dislikes, preferences and values is common to just about everyone. Most of the time we do it without ill intentions; it’s purely automatic.
I’d submit, however, that it’s an issue when it comes to something as personal as people’s health decisions.
At the core of shared decision-making is putting the patient’s values first. This sounds straightforward. In the real world, though, there’s often a huge leap from describing what shared decision-making should look like to actually making it happen.
I like the definition that appeared awhile back in Virtual Mentor, the ethics journal of the American Medical Association: “Shared decision making is an active dialogue between physician and patient with the goal of arriving at mutual understanding and agreement on a treatment plan.” (emphasis added)
It occurs to me that mutual understanding starts by getting a handle on how patients make medical decisions and what their preferences are for receiving information.
Do they want the unvarnished truth or do they want the discussion to be softer? How do they respond to scare tactics – are they motivated or are they turned off? Do they want to know everything or just the highlights? Do they want a high level of participation in their care or are they most comfortable with allowing the doctor to take the lead?
Doctors obviously can’t know any of this unless they ask. And since it seems unfair to expect them to explore (or remember) the patient’s preferences every time a decision has to be made, here’s a semi-radical proposal: Create a section within the medical record for the patient’s information and decision-making preferences – a values history, if you will, that documents key aspects that are important and/or helpful for the doctor to know, in the same way that social, occupational and family medical history are helpful for doctors to know.
Would this need to be a standardized, evidence-based tool? Not necessarily. Individual doctors or individual practices could develop something that works for them. Nor would it have to be lengthy or onerous, since getting to know the patient and his or her values is something that unfolds over time through a series of encounters and varying contexts, rather than as a single, static point of data collection.
It might be a good exercise for patients too, and could even help set the stage for better conversations about end-of-life care.
I can’t speak for Dr. Hornstein’s patient but I know what I would have wanted. I would have wanted to be told sooner rather than later, so I could have time to start absorbing the bad news and planning for what comes next.
I’m pretty sure I wouldn’t have faulted the doctor for waiting; she was motivated by the best of intentions. But think how much better this might have been if the patient’s preferences were known. The doctor wouldn’t have had to wrestle with the decision or second-guess herself, and the patient’s priorities would have been respected – no assumptions, no “this is what I’d want if it were me.” It would have been what the patient really did want, and it would have been shared decision-making.