A physician’s disappointment in hearing surprises about his loved one’s condition sparked new insights on the value of regularly updating families about the patient.
“She had a complete right MCA territory stroke with malignant edema. She’ll need a hemicraniectomy within the next few hours,” I heard on the phone. As a neurologist, I’ve said that exact sentence to my patients’ loved ones. This time, I was on the receiving end. I was surprised to hear these words. The last update I’d heard about my aunt was reassuring—she wouldn’t need surgery and was out of the danger zone.
Over the past year, my family has been hit hard by COVID-19. While some had only mild infections, others were intubated and suffered severe sequela, such as massive strokes. As the only physician in the family, I helped to translate the medical jargon and guide my family on critical medical decisions.
Unfortunately, as a family member, I’ve found medical updates to be few and far between. They only happen when a patient is worsening or when an urgent decision must be made. For my aunt, the decision for surgery caught us completely off guard. We’d only heard encouraging sentiments. My aunt eventually died, even with heroic medical and surgical interventions. While we were grateful for her medical care, the care team had minimized the severity of her condition, which impacted our decision making, coping, and eventual grief.
Even as a physician it hasn’t been easy to navigate the healthcare system as a caregiver and to be on the other side of the conversation. But it’s given me the opportunity to reflect on my own practice.
Here are 8 tips I’ve learned from being both a physician giving updates and a family member receiving updates:
1. Give frequent and scheduled updates.
Daily updates, ideally at scheduled times, help to maintain normalcy and set expectations for patients and families. Even if there haven’t been any acute changes in care or treatment, they’ll appreciate the updates. Having a set time every day will help to relieve the anxiety and stress about worrying when the next update will come. For ICU or critically ill patients, updates should be even more frequent.
2. Ask about the previous update.
It’s helpful to start the conversation off by asking, “Before I start, what’s the last update you’ve heard?” Sometimes family members and friends have already been updated by other members of the care team. With electronic medical records and access to patient charts, family members can read labs and imaging reports in real-time.
3. Know that the family wants to know.
Some people just want the big picture updates. Others want to know testing and lab details, like what was the most recent BMP or CBC. Sometimes families just want to know about normal daily activities, such as how much the patient is eating or sleeping. Have a good understanding of what the family wants to know.
4. Avoid sugar-coating.
Be honest if the patient is undergoing a risky procedure, has a significant chance of morbidity, or an unfavorable diagnosis. The last thing the family wants to hear is, “Don’t worry, she’ll be fine,” when the opposite is true. That doesn’t mean you have to be insensitive, it just means you should be honest.
5. Give realistic expectations.
If a patient is on the waitlist for a procedure, don’t tell the patient or family that it will happen that day or at a certain time. People understand that things are unpredictable. Don’t promise things that you can’t deliver.
6. Identify which family or friends will receive updates.
Remember, the patient (or healthcare proxy if the patient is unable) determines who can receive updates or privileged medical information. If there are multiple people involved, it’s helpful to identify a few key stakeholders to give medical updates. If multiple parties want updates, organize a time that works for everyone instead of updating each person individually.
7. Avoid paternalism or talking down to patients.
This should be a given, but sometimes we get carried away when things are busy. Always remember to frame the conversation and speak in colloquial language, especially if the patient or family isn’t fluent in medical language. Always remember to present options regarding decisions— it’s ok to voice your recommendation if appropriate or the family asks, but avoid telling families what to do. Give ample time for explanations and clarifications.
8. Leave enough time for questions.
I find it helpful to ask family members, “What questions do you have?” or, “What thoughts or comments do you have?” instead of, “Do you have any questions?” This helps to normalize that you want family members to share their thinking.
This piece expresses the views solely of the author. It does not represent the views of any organization, including Johns Hopkins Medicine.