Terminal diagnosis

[NervousNP]

I had a pt that came to me very ill in May. She was admitted for a hgb of 4 after having a syncopal episode going to her neurologist. She was having bloody stools but never informed me. She was in the hospital for 12 days. During that time she was consulted by general surgeon, hem onc, & GI. She had a kidney & liver bx after mass identified on CT scan. She was discharged prior to bx results & had scheduled follow ups with myself as well as all the specialists. My appointment was first & the others 1 1/2 weeks later. Her liver bx was positive for hepatic carcinoma. After discussing with a colleague I decided not to tell her because I felt the specialist should. I scheduled her sooner with GI because she was jaundice at her f/u appt to the following Wednesday. She missed the appt & subsequently ended up in the ED for progressive weakness. Unfortunately the ED doc informed her of her terminal dx. As expected the family was in shock, disappointed & I'm quite sure angry with me for not telling them during her follow up appointment. I feel so horrible & truly regret my decision to wait on the specialist. I feel like a failure as a provider. I just wanted other options of what you as a primary provider would do. Thank you for taking the time to read my post.

[traumaRUs, MSN, APRN]

I'm not going to beat you up for a past decision. I'm in a specialty- nephrology and many of my dialysis pts consider me their pcp. I do give them diagnoses and results if biopsies as I have an ongoing relationship. I think it's all about how comfortable you are. Maybe practice or prep a standard speech for delivering bad news. I always feel my pts out when I know they have a potentially serious disease or poor outcome. I ask if they would like me to look up the results and then I go off of that.

[djmatte, ADN, MSN, RN, NP]

This is a case in point on why I emphasize on telling my patients lab results I'm aware of even if I didn't order them. No you are not at fault for them failing to make their appointment, but as their pcp you are the liaison for bringing the big picture together for many. Also sharing that info could have made the difference of that appointment happening. You clearly feel bad for this (as you should). Learn from it, own up to your patient, and move on.

[NervousNP]

Thank you for your response. I completely agree. I did speak with the patient's sister. She was upset as rightfully so. I have had nothing but bad news after obtaining imaging/lab results for this patient since I became her PCP. I felt so bad for her, not at all excusing my poor decision not to reveal her diagnosis which of course did more harm. Thanks again for your input.

[Rnis, BSN, DNP, APRN, NP]

It's hard....but that responsibility as a PCP is as a liaison. They trust us to be honest and forthcoming. I wouldn't be able to give prognosis , treatment advice for the hepatic carcinoma.....so I definitely understand feeling hesitant discussing this. What I generally do is tell patient's results and honestly share that I do not have the background to discuss treatment/mgt options but I will get them to the specialist that can best help with that. I would have also placed the oncology consult to speed that process up.

[BostonFNP, APRN]

This is good self-reflective practice; the fact you are engaging in it is a good foundation as a provider. We all beat ourselves up about things we could have/should have/would have done, we learn from it, and we move on to the next patient with that knowledge.

1. Before you beat yourself up to bad: would having told the patient about the cancer diagnosis resulted in a different outcome?

2. You asked for opinions of other PCPs. Here is mine: PCPs need to pilot the ship and own the patient and whatever other cliche saying fits the fact that your role is to synthesize all of the information and treat the whole patient. If I knew the results I would have shared them. I have has specialists call and yell at me about this but at the end of the day it's my patient and I don't want something that serious out of my direct control.

[TuxnadoDO]

I don't mean to beat you up and I don't think you should beat yourself up - but you were the primary care provider? And you didn't want to break the bad news? To your patient?

This sounds like a decision that you made based on your own discomfort, rather than reflection on what was truly best for the patient. primary care providers are supposed to have a relationship with their patients, one built on trust and communication. They're supposed to help patients navigate the confusing healthcare system and coordinate their care, especially when multiple specialists are involved. I constantly hear that NPs are more "patient-focused" or "holistic" or whatnot.

Just learn from this. You must be forthcoming with your patients or they cannot and should not trust you for this very important job.

I hope you don't think that was harsh, it wasn't meant to be. My response of course from the perspective of an emergency room physician, and I'm often in the position of breaking bad news to patients, and I understand that not everybody has that comfort or preparedness. It's never easy, but it's worse when I'm telling something someone that their trust and physician or provider should have already told them. Now after having this experience, you can seek out information to help you be better at it in the future. If you look at it that way, it's a great honor. If you're good at breaking the bad news, you will be remembered as the provider who was comforting, honest, and didn't shy away. Trust me, a patient and their family will never forget the face or the words of the person who told them devastating news. And you can learn to become really good at it, so you don't leave it to other providers or physicians who may be terrible at it.

Best wishes.

[agrayRN, MSN, APRN, NP]

I'm not sure if you're primary care (I'm assuming yes), but I'm in neurology. It's expected that we won't cover everything, but I frequently will get questions about labs that were done that don't apply to my area. If they specifically ask me about it, I will tell them. If not, I leave it to the others, because I don't know that they haven't already been informed and I'd be bringing up something they don't want to discuss. If, during the conversation, I discover they haven't heard about it, I usually decide on a case by case basis. You'll do the same. It won't be the same for every patient. Don't be too hard on yourself. That's easy for me to say, because if it were me, I'd be feeling the same way you do now. :-) But as someone else said, just use it as a learning experience. That's how we get to be better providers.

[ghillbert, MSN, NP]

I probably would have told the patient, because I usually think about how it would feel to find out "accidentally" with a less-tactful clinician reading off a chart - because I have seen it happen. You don't need to get into the specifics, it's okay to say that you felt they should know so they can start to deal with it, and that the specialist will follow up with further information. It's good to reflect and learn for the future, so you're doing a good job.

[NervousNP]

Thank you for your input. She actually had all the specialist appointments already scheduled which i did verify to include oncology. This was a hard lesson for me but it has caused me to never make decisions based on my personal emotions. Thank you again, your response is greatly appreciated

[NervousNP]

I truly appreciate your response! You are so correct. I have told many patients about their terminal illness. I've actually had to tell a coworker i worked with daily and was also my patient about her metastatic multiple myeloma. That's why I'm so upset with myself. It was my selfishness because seen I began treating her I had nothing but bad news from day one. However, lost of trust is much worse. And it was unfortunate that an ED doc had to break the news to her and her family. I completely understand where you are coming from and much prefer the truth and honest feedback. Thanks again!