When a family member was diagnosed with Acute Respiratory Distress Syndrome (ARDS) following a difficult heart surgery and a 10-day stint on ECMO, the Pulmonologist laid down the diagnosis with a bleak, “Most people in your scenario die from this.” The patient blinked in shock at the “most”, but said nothing. Further, the doctor went on to say, “You’ll be on oxygen for the rest of your life.” Horrified, the patient locks eyes with the family members in the room.
In the eyes of the patient, these were two life sentences, delivered within seconds of each other. As the patient began to desperately well up with tears the doctor said, “I’ll give you some time to compose yourself” and left the room.
He never did come back.
Nearly two years later, this patient remains on oxygen but focuses on living life to the fullest—travelling to Ireland, the Caribbean, and across the United States. Yet despite her valiant fight against ARDS, she remains scarred by the interaction with the Pulmonologist; utterly convinced that ARDS will kill her.
This story is just one of many which reminds us how important those initial conversations with patients can be. A caregiver isn’t just relaying a diagnosis, they are laying the groundwork for that patient’s future expectations and potential successes.
There are several things that can help when thinking about communicating with patients.
- Be compassionate: Remember that while this may be an everyday occurrence for you, a diagnosis can be life-altering for the patient. Sometimes presenting the patient with facts directly after handing down the diagnosis is not the best method. Focus on the big picture and be honest but hopeful. The patient will have enough fears of their own, there is no need to add to this by instilling a feeling of hopelessness.
- Use simple language: This applies to both medical and statistical terminology; you cannot educate people and expect them to act on the information you are relaying if you’re using words they’ve never heard before and do not understand. Similarly, be acutely aware of how you present statistics. A 1 in 14 chance is easier to comprehend than a 7% chance. “Heart attack” is easier for patients to understand than “myocardial infarction.” While the official terminology may help in communicating specificity to other healthcare providers, many of your patients will not be healthcare providers and do not have the same experiences with these terms.
- Know the odds: Recognize that the odds don’t always matter when your patient has a diagnosis—letting them know that their diagnosis is very rare when they have, in fact, been diagnosed may instill more bitterness over their abysmal luck than anything else.
- Be on their side: Be a champion for your patient. This will breed compliance and make the patient less likely to turn elsewhere for advice and future directions. If the patient views you as contrary to them, they may be more likely to ignore the advice and instructions you give them.
- Offer them takeaways: The moment the diagnosis comes, the patient may mentally and emotionally shut down. By giving them information to review when they’re ready to process the specifics you demonstrate that you understand the difference between their needs now and their needs as they move forward with their diagnosis and are ready to learn more.
- Present information in multiple formats: When the patient is ready, communicate the information in as many ways as possible—the more ways you explain it to them the better chance you have that they will remember. This is one of the core concepts in teaching any material. You could be the best person at explaining a concept verbally; simultaneously eloquent, clear, funny, and informative, but none of that matters to the student who needs visuals to be able to fully process the concepts being discussed. The same is true with patients. Even if you verbally provide all the information a patient could want, it won’t matter to the patient who needs to visualize the information.
- Recognize that for many patients, the numbers won’t click: A solid understanding of statistics is not entirely common among the general population. Pair that with the fact that a patient is getting a diagnosis and is in a worse place than the average person, and you’ll have many patients who won’t understand the percentages, facts, and figures you present them with. Focus on simplicity and shy away from relying too heavily on the numbers. Further, there are ways to make information sounds better or worse while remaining factually accurate. Be aware of this and try not to pick the ways that make it sounds like all hope in the world is lost.
I’ll leave you on one final story. A few years ago, I took a friend to the ER when she was having trouble breathing—she had been having intense shoulder pain for months that no doctor, chiropractor, shots, or medicine had helped. No one could figure out what was happening with her shoulder and one night her shoulder pain had migrated to her chest and she couldn’t catch her breath. She thought she was having a panic attack but I insisted on the ER despite her protests.
While there, her concerns were dismissed almost immediately. “You’re young and healthy,” they said, “We’re sure nothing is wrong, but since you are having troubles breathing, we’ll have you looked at.”
Through the course of the next seven hours in the ER we were told there was an elevation of white blood cells in her blood test paired with elevated D-dimer levels that indicated a blood clot. “Whew” we thought – all things considered a blot clot seemed like good news.
However, after several tests came back, a doctor came in, pulled the scan up on the monitor, and frankly told us that there was a large, “10 cm” tumor pushing against her lung and heart, which caused her breathing troubles. “This is fairly uncommon for a patient like you,” he said.
He offered no hope, no advice, just a somber piece of information and promptly left the room, leaving my friend and I looking at each other in shock.
While the ER may not be the typical place that a patient learns of a cancer diagnosis, it is still just as important for care providers to communicate findings to patients in a caring and compassionate way. Whether an ER provider, a specialist, or any other type of care provider, the importance of careful and compassionate communication cannot be overstated.