a patient
Mr C, 68 yrs old, is the patriarch of a very large extended family. He was admitted to the hospital due to severe right sided chest pain and weakness. No matter the time, day or night, family members were at his bedside.
His initial work-up revealed a large right pleural effusion and a suspicious left kidney mass. Although final pathology results were still pending, the medical staff expected his diagnosis would be two different primary cancers: lung and kidney, each with a poor overall prognosis. Although the patient and his family understood that there was a growth on his kidney and fluid around his lungs, they were not yet aware of the potential for a terminal cancer diagnosis.
Palliative medicine was consulted to help with pain management and discuss ‘treatment goals’.
I went to see him accompanied by our hospital’s Spanish interpreter (he and his family are predominantly Spanish speakers). Mr C was lying in bed, awake and joking with the six people sitting at his bedside. With my interpreter’s assistance, introductions were done around the room, and I inquired as to whether it was ok to talk. His son, Mr C’s medical power of attorney, asked to speak privately outside. Mr C gave his permission, along with my interpreter we left the room to chat privately.
Mr C’s son had a feeling that “bad news was coming” and was concerned about how information would be given to his father. He wanted to ensure that he or just a few key family members be present, because while well-meaning, some of the family would not be particularly helpful. And his son feared a cancer diagnosis would be devastating. I explained to his son that I had no ‘bad news’ to deliver today- my function was just introducing myself and my services to see how to address Mr C’s pain symptoms. And I assured him that I would relay his concerns to his father’s physicians. We’d then take things day by day as more information became available; my goal was to support Mr C and his family during this process.
We returned to his father’s room and found Mr C and his family in tears. While we were in a quiet area talking, two urology residents came by, without an interpreter, and explained to Mr C and everyone in the room that the kidney mass was likely cancer, but “not to worry about it” because the chest issues were more pressing. The residents said they’d follow him as an outpatient; then they left. While I do not know for certain this is exactly how the news was delivered, it’s certainly how it was experienced.
This was exactly what the son was trying to prevent.
It doesn’t take a palliative med provider to explain that this situation should not have happened.
Let’s start with some ground rules.
And these apply anytime you are meeting with a patient/family, whether in the inpatient or outpatient setting; whether it’s in your private office, the ICU, the emergency room, or on the wards.
- Don’t just start talking. Even if the patient knows you, if they are not alone, take the time to introduce yourself and find out who else is in the room.
- Don’t make assumptions. Are you certain that everyone in the room should be privy to what is about to be discussed? Remember to ask up front if it’s ok to talk about what could be sensitive issues in front of the people in the room.
- Interpretation assistance. Don’t rely on family- particularly if sensitive/serious issues are to be discussed. The family member is there to provide support for the patient and will also be affected by the news, so if they are the interpreter, it’s very awkward and unfair. If the patient insists that a family member be the interpreter, still have your own interpreter present to listen to the conversation and ensure the information is being expressed correctly. Family members may ‘sugar coat’ difficult information, which although well-meaning, is not beneficial. And remember, talk to the patient, NOT the interpreter. This can be challenging particularly if the interpretation services are provided by video- feed or phone, but your focus must stay on the patient/family.
- If necessary, apologize up front. Ex: if you were running late- don’t offer excuses, (patients don’t care why you are late, they just know you are late), acknowledge that you are late. If it took the patient forever to get an appointment- apologize up front and perhaps mention that now that they are under your care it will be easier to get you in the future. Or if the room is cold- apologize up front. Anything that allows you to acknowledge any discomfort on their part helps build rapport
- Shake hands or somehow touch them. Touch is important- also gives you some insight into how the person is feeling or their overall condition. (cold, clammy- maybe more ill than you expected; sweaty- very nervous, etc..)
- Sit down. Studies show that just the action of sitting down makes patients feel that the provider has spent more time with them. It’s useful to have everyone in the room on similar eye level.
- Face the patient. Nothing should be between you and the patient. Ensure the patient can comfortably see and hear you (close curtains to remove glare from windows, turn off televisions, etc.)
- Put aside the computer. In the age of the electronic medical record, this can be challenging. Use the computer to check information or show important diagnostic scans that helps explain ongoing medical issues. But when it comes to really having a conversation you need to put away the computer. There’s no way you can have a true conversation, with the computer as a third wheel during the conversation. Remember, the patient is a real person, not an iPatient (Verghese, A. Culture Shock- Patient as Icon, Icon as Patient.
- No absolute agenda. Sure, you need to have an idea about what the conversation will cover, but you need to stay open enough to be able to meet the patient/family where they are and respond appropriately. Accept that sometimes final decisions won’t be possible after just one conversation. Unless it’s an absolute life/death emergency, trying to force a decision can set up conflict and antagonism and incorrect treatment plans. You need to go where the patient is able to go, and when possible guide the conversation along safe plains.
- And of course- let the patient go first. Had the urology residents started by inquiring about the patient’s understanding of his medical condition, someone might have mentioned getting his son back in the room for the discussion.
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