Back in the early-’90s, Michelle, an elementary school teacher, visited a local blood bank to see if she would be a possible match for a woman in desperate need of a bone marrow transplant. A couple of months later, after hearing nothing about being a match, the teacher received a letter in the mail from the blood bank. The letter said that her blood had tested positive for something new called “Hepatitis C,” which was apparently a bad thing, but they didn’t know much about it at the time. They suggested she see her doctor and please never donate blood again.
Wow, lots to think about with very little information to go on. Michelle had many questions, so she immediately called to make an appointment to see her doctor. While waiting for that appointment, because you obviously can’t get an appointment that day, she asked her husband if he knew anything about Hepatitis C, since he had worked in the healthcare industry for 20 years. He’d never heard of it. She then called her son at college to see if he had any idea or could ask around there (who knows?!). No one knew what this disease was, was it fatal, was there any treatment, or really anything at all.
Michelle had been given potentially devastating news, in a detached fashion, without any ability to find out more. Maybe this wasn’t terrible news, maybe it was. “It seems bad that I can never donate blood again. Doesn’t that sound bad?” Panic.
How is it that patients entrust physicians with their care, their lives, and we tell them potentially life-changing news in this way? The unnecessary anxiety that it causes is just that, unnecessary.
Fast forward 25 years, we’re still making similar mistakes with patients, just using newer high-tech methods of communications. This past year, we had a client of the company where I work request a series of follow-up Interactive Voice Response (IVR) phone calls that include a message that breaks the news to patients that they’ve been diagnosed with Diabetes. Now, this wasn’t a request from an untrained administrator; this came from physicians. Obviously, our team of voice designers pushed back, recommending we communicate to the patient that there is some information from their tests that we’d like to discuss if you could call us at the hospital.
Haven’t we learned from our past mistakes? Surely patient experience experts have been discussing this, no? I can find numerous examples online on how to deliver bad news to patients, but I’m at a loss to find anywhere where someone says how not to deliver bad news. There are so many ways doctors can communicate with their patients nowadays, but all of them (emails, IVR calls, texts, patient apps, voice-assistants) remain detached from active interaction.
Organizations like The Beryl Institute are making great strides in Patient Experience (PX) training and publishing best practices, but those guidelines go to the physicians, nurses, and hospital staff. Unfortunately, medical practitioners aren’t the ones building the systems that are currently being utilized to deliver results and diagnoses; it’s left up to software developers and user experience (UX) designers to know how to handle these crucial interactions, and they don’t have the training.
So if you are in any way involved in creating products that connect with patients to deliver results or diagnoses, let’s follow this simple rule: Do not give bad results using a detached modality. Or, more simply, our mantra should be: Never Give Positives.
That’s it. It’s so easy, right? Let’s break it down word-for-word and see what we have:
Never = This one is pretty self-explanatory. Note that it doesn’t say “sometimes” or “avoid,” it says never.
Give = We give information to patients in a variety of ways. Note that I didn’t say “discuss.” I am explicitly referring to detached one-way communications, where a response to any question would not be immediate.
Positives = When a patient tests “positive” for something, that means they have what they’ve been tested for. The same goes for positive diagnoses for conditions or diseases or even concentrations (ex. blood tests). It doesn’t always have to be disastrous news; it’s anything that is not normal.
Back in the mid-’90s, while a student at Northwestern University, I worked as a programmer for a small healthcare IVR startup in Chicago called Viner Medical Software. Their service was called the Patient Results Network and, at the time, it was a pretty novel way to deliver automated results to patients over the phone. On my first day, the president of the company told me his main rule: We never give out positives. Why not? Because in doing so you’ve just lobbed a giant matzoh-ball at a patient, but you’ve tied their hands behind their back. Not giving bad news was our way of adding back in some compassion to a rather cold method of communication.
There is a counter-argument: giving a detached message is OK because it gives them time to process. According to the American Academy of Opthalmology, in their 9 Tips for Delivering Bad News, “After bad news is delivered, the patient’s ability to absorb subsequent information during that same visit is often lost. As the news sinks in and realities surface, the patient often benefits from further discussions…”
Based on that suggestion, one could argue that sending a detached letter or email with bad news is still OK because the patient doesn’t have questions right away, they’ll be in shock, and they’ll need time to process first. This idea only works when the patient can immediately ask questions but not ask ALL the questions.
“Test results need to be delivered quickly, clearly and accurately, in order to minimize stress for patients and, where a disease has been diagnosed, refer them on to the appropriate care pathway.” (Williamson et al., 2019) If they’ve received the message through a detached method of communicating, there’s no way they could follow this guideline.
How could we better handle a situation like this? It’s as easy as telling the patient that we’d like to discuss their results with them. Think of it as a HIPAA issue (which it very well might be); you don’t want to give away too much information but enough to let them know they should contact their care team.
Imagine that the message you’re about to convey is being done in a written letter…to your own mother. Would she freak out, even a little? Yes? Then steer them away from those direct results and towards their care team for a connected dialogue. As patients become more and more flooded with detached communications, the more we can do to lower patient anxiety, the better.
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