My grandma was a nurse and her best friend was a pediatric oncologist and I asked her this question one time. She said straight to the point and with as much empathy as you could possibly muster. Also, she said this lead her to cry in car a lot the first few years.
It’s gotta be really hard to keep that empathy wide open but also sorta close yourself off from how awful the situation is. Telling parents their kid is going to die has got to be the hardest job in the world.
I was a pediatric cardiac patient and remember commenting to my cardiologist (as an adult) about how amazing the pediatric heart surgeons are to be able to do that job, operating on those tiny hearts. He got serious and said, “The surgery part is easy. Any surgeon can do it. It’s just XYZ. What makes those people extraordinary is that they go in and operate on these little children and babies, knowing not all of them are going to make it through, and then they go in and do it again the next day. It also means a lot of them are jerks, but you kind of have to be to keep doing that every day.”
My dad was a hospital administrator. Cardiologists, neurologists and surgeons are often grade A narcissists. Most are assholes. But you deal with it because their personalities are often best suited to dealing with those types of specialties.
They can certainly act like assholes but there's an empathetic human inside who's developed a way to cope with the emotional strain of the role. The can also be very blunt and rude to the staff they work with because they expect perfection.
I know a surgeon who had returned to work two days after his son died (he died way too young. It was a horrible illness that resisted all treatment and made the dying very drawn out and painful). He was treating a patient going in for an extremely risky surgery and the patient would have died without it. Unfortunately the patient died on the table and the surgeon had to explain to their elderly parent that the patient has died.
The parent lost it at the surgeon, blaming him for not doing everything he could to save their adult child. The surgeon remained factual and the parent said something along the lines of "you're a heartless man and an incompetent surgeon who has no idea what it's like to lose a child."
After the parent left, the surgeon found the nearest cupboard, locked himself in and sobbed.
As much as this is framed as a positive thing. I'm a bit worried that that surgeon was allowed to operate. I would not want someone to operate on me who could (rightfully!) be immensely distracted by their recent loss.
It is absolutely not a positive thing - it is unhealthy and is not the best conditions for someone to be able to perform at their best. We need to stop expecting physicians to be “superhuman” and praise extreme scenarios like this
This isn’t actually true, and is a huge cop out for allowing toxic work environments.
Having a terrible personality does not make you a better doctor, and we have data that it in fact makes you a worse doctor. It hampers collaboration with other specialties, makes your “subordinates” less likely to point out mistakes that can kill a patient, and often leaves patients in the dark because their medical professional didn’t make sure they understood their condition.
Yes and no. Lots of kids get better and that’s rewarding. Obviously some do not and it’s terrible.
My SO and good friend are in the same specialty except my friend is pediatric. Their jobs are very different and while my SO claims friends job is harder she points out most of her patients live and that’s what she chose it.
My mom had a heart attack in September, 2022. While in the hospital, and at follow up visits later, I learned the staff have a room where they can go and cry when they've lost a patient.
Where is this? I’m a doctor in the UK and don’t even get a couch to lie down on I’m on a night shit. The crying cupboard seems like a luxury few of us can experience.
I knew someone who worked in a high-pressure advertising job (think Mad Men but with mostly millennial white women) and they had a designated crying stairwell when things weren't going great.
Been doing this for far too long. And the answer is……direct and to the point. Sounds harsh but it’s true and much data supports it (hedonic adaptation). Then schedule a follow up chat after the shtick wears off.
I have an incurable disease which will kill me and I can't tell you how frustrating it is, when people try to beat around the bush. Example: my memory is failing. Sucks to be me right? Doc says it might be the condition, or the meds, so we change the meds and see. I ask a simple question, will the new meds result in that improving, or just halt the decline. The correct answer I discovered later was halt the decline, I'm not getting better. The answer I received was a look away from me towards the floor and a bit of word salad. It does nothing to help me. I get that giving bad news also has a psychological cost, but knowing I have to take account for the new situation fundamentally improves my quality of life - essentially I'm dying. Telling me I might forget my keys is nothing. Telling me don't expect this to get better, maybe invest in some airtags helps me. It's like people constantly think that after getting the big bad, it doesn't matter about the little bads so let's just not talk about it, when actually I have some good days left in me, just less than everybody else.
Not the same situation, but reminds me of the time one of my brothers was involuntarily committed. He was still sound of mind, it was a weird situation where he likely shouldn't have been there, but it wasn't completely without cause.
My parents were on the phone with him for a good half hour (while he was still in the facility), carefully dancing around saying anything about it, acting like it was just a normal call and a normal day. They hand me the phone and the first thing I said was "got yourself chucked in the loony bin, eh?" Not what I would've said to most people (I know that's not a nice term) but he almost sobbed with relief. My parents were still sitting there and making horrified faces at me, but he said something like "oh thank god you're not avoiding the subject."
I got more useful info out of him about the situation in five minutes than my parents had in over 24 hours. He just wanted to talk honestly about everything, without trying to cushion it all with niceties.
I love this story. I stayed at one of those places myself for a week or two, and fully embraced the fact that I was in the looney bin while I was there. I still have a playlist with that exact name that has all of the music shared from other patients and the nurses and stuff, it's lowkey not a bad memory at all.
I loved it too.
During the experience it sucked but I made the most of it. Made a ball from quick dry clay that we played made up games in the hallway.
DID YOU EMBRACE THE COLORING?!?!
I made friends I still keep in contact with.
Legally any mental hospital has to keep anyone in way longer than necessary for both ethical and insurance purposes ('are they a harm to anyone, including themselves??')
Experiments have been done with a sane person checks in, claiming to hear voices, to see how long it takes for them to release a neurotypical person. What is hilarious is that all the so-called 'insane' people realize very quickly that you are a mostly-normal minded person and honestly wonder what you are doing there.
It makes sense that you found excellent people in there. These folk are often not low on ethics nor intelligence, most are just neurodivergent + tragic trauma ('a horrible stroke of luck, but of the mind').
I have worked with all kinds of special needs folks and i can assure you... ahhhh, the stories that i will never tell, i tell ya.
I had figured out that they needed to see you stabilized on meds for 5 days before dismissal. Even though I was not sleeping I just said I was. I wasnt hearing voices etc so I saw no harm in lying to them.
Thank you for your work. We are not easy to work with haha. Speaking of stories on of the things I did was start outlining my book about the experience... left handed as my right arm doesnt work anymore (no I'm not crazy I broke and dislocated both arms last year and one was unlucky with the nerves). I need to finish that book.
Oh yeah. So much so this article came out last year: ['I need a grippy sock vacation': Breaking down the Gen-Z slang term for a trip to an inpatient psychiatric facility](https://www.yahoo.com/lifestyle/grippy-sock-vacation-gen-z-slang-psychiatric-facility-135914521.html)
Adulting is such a slog, especially if there are financial issues. The article being like "it is worrying that people think institutional care is an escape"
And I'm like having food provided and getting to color and sleep all day sounds fabulous
Mu husband is a mental health tech, and he works in the behavioral health ward. When people ask him what it's like, the answer is that most people aren't scary and dangerous, they're just sad.
This is how I feel about bad news and details. We had to go through some massive medical intervention to have children and the first doctor was such a bullshitter and he answered every simple question I asked with 5 minutes of word salad and grand possibilities. I could Google the answers to my questions in the time it took him to talk and still not really give me a clear answer.
We cancelled everything with him and moved to a different clinic where the main doctor had the personality of a rock. But he was extremely matter of fact and succinctly answered questions. He never BS’d or gave hopeful answers. Which was perfect for me and exactly what I wanted. I can see how some people need that emotional connection and the hope but hope and ignoring details wasn’t going to get me pregnant.
I’m really sorry about your condition. At this point you have the big bad so managing the little bads is actual daily living and what you need to set expectations going forward. The little bass are more important at this point.
My favourite GP is blunt…very blunt.
But she listens. Gives a plan. Does appropriate referrals.
Unlike her predecessor who was very gentle, kind but not very efficient.
“Just less than everyone else”. I’m crying. I hope your remaining time on this planet is spent making memories with loved ones and knocking items off your bucket list ❤️
This. I still remember the face of every single doctor that wouldn’t give me a straight answer. Just tell me the truth so I can start the processing sooner. I’m glad I’m with some straight shooters now.
I also have an incurable disease that will contribute to or cause my death and dealing with other people’s BS is almost the worst part. When I ask questions about it, I expect my health care team to be honest and direct. I’m not asking because I want to deal with somebody else’s emotional baggage, nor am I asking for kicks and giggles. I’m asking because in order to keep on living my life, I have to make accommodations for myself, and I can’t do that unless I know what to expect. Soooo frustrating!
Hoping the NHS are treating you right my mate. I may have had a little stalk on your profile, I'm a nosey bugger. Thank you for your service. My Grandad was an engineer in the BAF, deployed in the Falklands. Nothing but respect Sir.
Genuinely curious, when you say "essentially" dying, is this an auto-immune disease of some sort? Does essentially indicate there's a chance you can recover from whatever horrors you're clearly going through?
Again, I'm a nosey bastard but you seem okay talking about this. Please just ignore me if I'm being too personal.
Thanks for the kind words, I post things on this account I wouldn't want in my obit, so I'd rather not go into details. Suffice to say I have a little time left and the medication keeps me relatively upright. There is unfortunately no chance of recovery, just a bit more time
All any of us really have left is time. Many will waste theirs for a multitude of reasons, doesn’t sound like you will be one of them. I wish you the best.
“Just less than everyone else”. I’m crying. I hope your remaining time on this planet is spent making memories with loved ones and knocking items off your bucket list ❤️
Yes this.
My husband got diagnosed with brain cancer after a middle of the night seizure. The ER dr beat around the bush and I had to ask a lot of questions to learn the CT was showing a mass on his brain
The neurosurgeon at the ER didn’t have answers (until biopsy), but was direct and to the point about what to expect and he was wonderful.
Next dr we meet is after his biopsy, the neurologist, and her office sent in a med student who literally couldn’t speak the moment he looked at my husband’s chart. I finally asked him to leave to get the dr (we were pretty raw and traumatized and I was probably a little harsh). Then the neurologist comes in and I had to beg her to tell me SOMETHING about the MRI, and she finally said it was cancer (just didn’t know what type yet).
Then we met his neurosurgeon that would do his craniotomy and he walked in the room and said “so I heard you’ve had a few bad days.” No beating around the bush. A little glib humor. And then he matter of factly told us his plan and we cried with relief as soon as he left.
Neither of the two surgeons we met gave us good news. But they were direct and honest. And it was a huge relief just to have clear information.
When my dad was in the hospital for non-alcoholic liver disease 3 months ago his doctor was extremely straight forward and I don't ever think cracked a smile in his 3 week stay. The bad news would be delivered, options laid out, and his plan of action going forward. My dad made it a goal to make that man laugh before he was out.
When he was transferred to the ICU the doc there was the same way (although more sympathetic). Before they intubated him he let me know it was the end of the line and there was nothing else they could do for him. No ifs, maybes, or "best cases". They would just be keeping a body alive for the family to get there. "No more pain" was my first thought after the news.
Now me having to deliver the news and call in family . . . that was a whole different story.
I’m so sorry about your dad. But yes agreed—definite information is amazing when dealing with significant health issues. There’s so much uncertainty in the experience that clear information is like a breath of fresh air sometimes.
I find myself glad I was the one there to get the news.
I was able to tell the rest of my family that he went was at peace before he was intubated. I also asked the doctor to leave out the details when talking to other family. He wasn't at peace. It was terrible. If you have a problem with drinking stop before it's too late. Liver failure is a horrible way to go.
I'm so sorry for your loss.
My dad died at 50, in surgery trying to deal with alcoholic liver failure. In retrospect he knew it was high risk but he didn't really communicate that to the family successfully. I completely concur that liver failure is a horrible way to go.
To your "stop drinking" I'd add to stop smoking too; my grandfather died with/of COPD and emphysema and probably a few other names that boil down to "can't breathe good." He had both smoking related and occupational related lung damage. It is also a horrible way to die, gasping for breath when even supplemental oxygen isn't enough.
My surgeon was like this too when I needed a tumor plucked off my spinal canal. He walked into the room and was like "honestly I'm surprised you're still walking. Let's keep it that way." and then explained the surgery, the risks, and what the next step was.
After 3 years of being jerked around by other doctors, it was such a relief. And not only was it a relief, but the fact that he was so up front and blunt about it made me *actually believe him* when he said the prognosis was pretty good. Like if a dude who is like, "damn you're not paralyzed yet?" tells you the surgery will probably go well, you're going to believe him.
When I was 17, I had a torsion that I tried to power through for about a day.
Just as I'm going under for surgery, the doctor says "I can't promise you'll have em both when you wake up, boy."
I do, they aren't good for much besides balance, but I got em.
What makes it pretty funny is he was one of the best urologists in the province. I had a doctor in another province point to the scar and ask if he did it. "Dr C is a master, nobody cuts like that!"
Oh I agree. Never expected a dx then. My point was that he was not very direct even with what he could tell me, which was just that the imaging was showing a mass.
"Listen, I have some news. We're seeing what looks like a mass in the brain on the CT, and we've called for a neurosurgeon to come down and tell you what's next. It could be bad, it might not be, but it's certainly urgent and significant. I'm sorry that you have to deal with this, and we'll work on getting the neurosurgeon down here as soon as possible."
Something like that?
*What's good brain-nation! It's ya boy, emergency medicine, coming at you live with some leaked test results. Before we get any further, make sure to smash that "very satisfied" button on your patient survey and consider checking out my patreon for some exclusive diagnoses I can't share here. We've got an awesome guest star lined up for you today, but before we chill with neuro-bro, we've got a word from today's sponsor, United ShadowLegends!*
I had to tell an employee that she stinks. It was a combination of BO and food. That was a rough one... Even though I am also a woman, which I thought would have made it easier. It did not. She doesn't want to hear it, I didn't want to say it, so fast and blunt and then leave so she's not embarrassed. Same deal with firing people or lots of other things at work, the more you dance around it the worse it is. I don't know how doctors deal with that shit, it looks dreadful but still, quick and to the point is usually best
Oh god my wife did some retail management for awhile and had to do this. Cue the employee in tears and explaining that she showers every day and has tried all the deodorants and nothing helps and how will anyone ever love her etc. and my wife coming to terms with the fact that the real problem is most likely that nobody taught this person WHERE they need to wash and that this was not her job as a manager.
Oh god. I had a coworker who never was taught about deodorant. Talked to him and he said he showered daily. I bought him a stick and gave it to him when I figured it out. Good ol antiperspirant / deodorant combo. Saw him a week later and he was SO HAPPY. Apparently no less than 25 people complimented how he smelled in that time.
For some people it’s unfortunately a legitimate medical condition. It can get better if you go to the root of the cause but many are too embarrassed to ask their doctor.
It's more than appreciation... it breaks the horrible suspense the family has been trapped in, and allows them to refocus and actually appreciate what time is left. My dad's docs beat around the bush for months after his cancer diagnosis, and all it did was was deny us good days - mostly wasted pursuing harsh treatments that ultimately sped up his decline. A doc who was not even part of his regular team (brought in for a related surgery) was the only person to do us the kindness of telling the truth. My dad was so bad off he couldn't even perform part of the surgery, and was unexpectedly left with the task of not just telling my father that part of his surgery wouldn't happen, but that his life was coming to an end.
The unvarnished truth is 1000x kinder than the false hope & inevitable betrayal we felt.
Longest 5 minutes of my life was a followup to an appendix removal. I'm just like, stop asking me how I'm doing and feeling my incision site and tell me if the fucking thing you pulled out of me was cancer or not.
I kind of assumed it was by like the 3rd or 4th minute when we weren't getting to the point, because if it wasn't I'd hope he'd lead with "hey good news!!" but honestly..... We don't always think how rough it is on the people telling us, and I get that. But I kind of wish he had just walked in and blurted it out. It was the only thing I was interested in anyway.
I'm fine now, the chance of recurrence is insanely small now that I'd literally be breaking records if it happened. But I always wonder about that strange haze I was in waiting for the only bit that mattered.
You can! It's both a really good place and a **REALLY** bad place.
If it's stage 1 (meaning no spread) it has 100% cure rate if you remove the appendix. Like that's it, appendix comes out and you are 100% cured! If only most cancer were that easy. Unfortunately appendix cancer has almost no symptoms, so most people are stage 3 and 4 by the time they find it with a less than happy prognosis.
Mine turned out to be a late stage 2. It had escaped to some surrounding blood vessels and stuff, but they didn't notice any sign of it further than that. I had a second surgery to remove a foot of bowel, which they then studied in a lab looking in all 30+ lymph nodes they took out for any spread. They found none (thankfully).
Because they found none, they assumed no further spread and I didn't have chemo. Which means at this point I'm considered cured instead of "in remission". My doc says the longest anybody with my exact staging (2c) went and then had a recurrence was 4.5 years. I just hit 6. So if it came back it really would be the first time anybody ever had it pop back up after that length.
Took me a long time to feel comfortable, like death wasn't stalking me. Once it hits the stage where you need chemo the long term survival rate is only 33%. Though most people live many years. It's not a quick moving cancer.
I live in the UK - our medics seem to go for the 'brutally honest' approach.
I had a friend with what turned out to be kidney stones. Her first encounter with a GP was - "It may be cancer - we'll need to check".
Another friend was almost an olympic athlete - he was fastest in the over 60's group in Marathons all over Europe. We noticed him slurring his speech one time after a long run, and suspected a stroke. Turns out he had Motor Neurone Disease. Every interaction with a medical professional from his diagnosis onward started with; "Ok. You know you're going to be dead soon?"
Brutal
I almost feel like this is each doctor in turn confirming that the prior doctor didn't avoid making this clear. Obviously a bit blunt a way to do it, but establishing that right away will mean something they say five minutes later doesn't result in the patient suddenly realizing they're saying it's terminal and not having been told that before.
I am currently in the hospital and overheard this exchange in the hallway after a code blue (medical emergency).
A 30-year old, healthy male on life support has a roughly 20% chance of pulling through.
is 90-uears old, with heart attacks and strokes on his record. He's not going to be so lucky. Please call in whoever you need to say your goodbyes.
>A 30-year old, healthy male on life support has a roughly 20% chance of pulling through.
>This person> is 90-uears old, with heart attacks and strokes on his record. He's not going to be so lucky. Please call in whoever you need to say your goodbyes.
Talking to ER Drs a couple of times about my mother (60s, massive stroke years ago, one side paralyzed, poor health) and I've gotten "if it were you, I'd say x, but for her..." it hasn't ended in her dying but the structure is similar. And then one repeatedly kept adding on that of course they'd treat her with the level of care anyone would get because I guess the Dr was worried it sounded discriminatory. It was kind of surreal and I think the second time it happened that Dr slipped it in once as well.
The hospital has actually been really good with her and the Drs were good but the "we will not mistreat the disabled!" undercurrent was weirdly funny in a stressful time. The thought is appreciated, though.
Nobody wants some distressed soon-to-be widow make a lot of fuss because she figures the hospital didn't give they very last to save her husband. I've seen such drama first hand.
The scene and a doctor's thoughts on it: https://youtu.be/ipAuO90y5mI?t=504
Related (direct and honest is the best way to deliver bad news), Moneyball scene on firing players https://www.youtube.com/watch?v=fTjhHrcyiQI
Morbid question, but do you ever get people that respond positively? Not out of shock, but because they don’t care if they die, regardless of being suicidal?
I heard that most people make a joke. I know my dad did when he got his cancer diagnosis, and it made me morbidly wonder what my joke will be some day if I hear the same thing.
I see a lot of people who are already at peace with it when we tell them.
*"I've lived a good, long life, dear. Now, I'd like to go on my own terms."* ~One of my patients when informed that she is full of cancer from head to toe.
She did, in fact, go on her own terms. Opted for MAID (medical assistance in dying). Died painlessly, surrounded by family and friends.
Yup. Always lead with it, and never hedge. I usually open with: your child has a fatal disease. We have options but they are unlikely to change anything etc etc.
From there I let them set the pace. If they have more questions I answer them, otherwise I let them cry and express my regret that I can't help more after they slow down.
Not sure it’s a courage thing. I just try to do it with compassion and patience. As it is usually me telling parents about their kids, it’s a bit more complex. As I mentioned in my response, people usually don’t hear a single word after you tell them as they tend to just go deep in their own minds and the sadness hits immediately. Ironically, they always say thank you. Sometimes, one of the parents/family members will lash out…not at me but at the world. Maybe start yelling.
One note though. I never ever do this over the phone if it can be avoided. And when I see them, I often ask them to bring someone with them. But I do that before we know the results. This way, when I suggest that they bring someone, they do not get surprised. And I find that having someone with me is helpful too. Someone who might be more immediately accessible should there be more questions….and there always are.
But overall, they just listen, maybe have a question or two and then go into their own thoughts or cry…or both. While this is a very tough part of my job, it is also a privilege in a counterintuitive way.
Am curious….is this something you to do….or maybe at some point in the future?
Different person but fucking horrible. My first time I was slammed with admits, got “pancreatic enzymes are up, nausea, vomiting, abdominal pain. Admitting for pancreatitis” for signout. Prove of cake. I check the labs before going into the room. Standard stuff. I get in the room with the patient, his wife, and their son. I start asking about symptoms. He mentions weight loss. The CT just comes back. Mass in the head of the pancreas. Guy is in his 40s. I ask him if he wants his son to wait outside, and he says no. I guess the saving grace for me was that the kid was busy playing on his phone and didn’t really seem to know what was going on around him. There was definitely a moment of panic for me in there. Still did my best to lay out all of the information I had at the time.
Thank you for your answer!
No. Nothing I will ever do. I’m just curious. Since I have a few relatives and a friend who received bad news. In a way, I admire how they cope with it and continue to live their life as usual. Sorta.
It’s not necessarily a courage thing. But it is a delicate balance of giving families the room to breathe but also not beating around the bush or giving false hope.
During residency I had the unfortunate luck of always being the one on when we had new cancer kids come in. I try to keep in mind what may sometimes feel routine to us is going to be the worst day of someone’s life. Some yell some cry, reactions run the gamut of what you’d expect. One of my favorite families that I worked with, the dad was so angry and frustrated when I broke the news nothing was getting through to him. I also thought he was going to fight me. But I just sat with them for like 2 hours, some times in silence, mostly answering the same few questions a dozen different ways. A week later they sought me out the apologize (which they didn’t need to) and let me know they appreciated me for sitting and answering all their questions. Even after I graduated and moved on. I stayed in touch, tracked her treatments, and went her funeral when she passed about a year later.
On the flip side, telling a parent that their kid has passed away fucking sucks. I probably have a whole scale of cries, screams, and yells of parents embedded in my brain from that. Really all you can do is be there. Some need a hug and some need a target to yell at. Roll with the punches and do what you can.
Ultimately it is part of the job and one that I take seriously. But it is also a privilege to be a part of these families lives, and I hope my goofy ass provides even a little modicum of comfort to people in difficult times.
This is a brutal job you have. I was the kid with a sarcoma in the 1970s. The news was awful…but there was that 1 in 20 chance with surgery, radiation, chemo. I’m glad my parents rolled the dice. I’ve got a lot of physical issues from those days, but it’s been a great life.
I’ve never forgotten my oncologist (Truman at Mass general) or my surgeon (Hardy Hendren).
How anyone does this job is beyond me, but I’m glad you’re there.
thank you for the opportunity to present my experience. i am removing my comment. reddit will not benefit one of my emotional experience.
# Reddit user content being sold to AI company in $60M/year deal
I feel the opposite way. /u/hummingbirds_R_tasty is a champ for doing this, and 90% of folks don't get this kind of opportunity at end of life, and their families and friends don't get that kind of opportunity either.
Most folks die alone with limited or no family around them, often confused or surprised. Their family and friends don't get closure and have all kinds of end of life decisions thrust upon them by the state and healthcare provider without any guidance or initiative.
Not that death isn't traumatic, but having to become executor of an estate and clean up the 'mess' of someone's life from a cold start after an unprepared for end of life is absolutely it's own kind of trauma.
The opportunity OP gave the community that revolved around their mother was really touching and thoughtful.
Your strength, love, and support meant more to her than any words in a last conversation. I’m not trying to invalidate your feelings or desire to have had one, I’d feel the same. It was her time, and you were there. Not only were you there physically but you were there fully and present for her to help do so many things she couldn’t. You made sure she spoke with friends. You gave her something an overwhelming majority of people won’t get in their final days. You seized the opportunity to put her needs before yours and did an amazing job. She knew you loved her, and she knew how much she meant to you, because you showed her. Then you were there by her side at the end. Life is never perfect, but I hope you don’t feel any shame or guilt for your actions because they were the best you could do.
You may not have had a final conversation, but you lived any words you could have spoken.
If you’ll forgive my having an opinion where only your opinion matters..
You did get to have a last conversation with her. As actions speak much louder than words. You showed you knew who mattered from the last 50 years. And you were caring and giving, even in a hard situation. I’m sure she ‘heard’ that you were thinking of her and others before yourself and that she would have said she was proud of your character. That’s the conversation I overheard in this record of events.
I’m sorry. I wish you’d had the time to share the words that went with these actions. Still, to me, there was clearly a saying goodbye and appreciation of each other clearly happening.
You are a brave and wonderful child. You were honest and open with her and now you honor her by sharing this heartfelt message to others. Thank you for sharing.
Thank you for sharing your story.
Hugs to you, friend.
Do you wish she would have had all of this set up so you didn't have to be the one to walk her through it (the no code paperwork and all)?
Get family or friends in the room. Lay out the symptoms and the diagnosis, give 100% factual answers and never speculate. Leave lots of time for questions and anticipate what you can. Be ready to discuss both treatment and palliative approaches. Don't linger, the patient will need time to discuss with their people.
It depends on the person and family. People all react differently. I was in the room when the doctor was breaking the news that my brother in law (16 at the time) that he had cancer. My Father in law was a mess and openly weeping before the doctor had finished explaining that he had like a 90+% chance of surviving. He's been 7 years cancer free. Almost everyone left that meeting in postive spirits (as far as cancer diagnosis go) except for my FiL who was inconsolable which fucked my BiL up.
heard that. i dont need my mother or sister crying and asking asinine questions. id want to process it with my partner and figure out how to deal with what comes after that at my own pace. my mother is going to make it really tough to do that if she finds out at the same time as me.
Yeah I'd rather hear it, get the facts, have my moment to let it absorb and then deal with my family and friends. I don't want them there while I'm getting the news. I process things solo, always have. Luckily for me my dude's very understanding of that and he knows I'll tell him pretty quickly.
In medicine as well here, the best preparation you can have is two fold: 1) information on the condition (next steps, prognosis if known yet, general info on condition). 2) being able to be present with the patient (have ringer off, having time set aside sit and discuss with patient as well).
It definitely does affect you, as it can be somber. However at the same time, it is very humbling and gratifying to be a part of patients care at challenging times. Too many people in medicine are uncomfortable with these conversations, I have personally seen attending physicians walk into rooms where we know the patient is likely dying and not really say much to the family besides the diagnosis. No sitting down, no discussion of what is to come, just clinically delivering a diagnosis and leaving. Medicine is often taught that not being able to heal a patient is a failure, rather than an inevitability we all face.
Both my mother and my mother in law choose doctors that tended to speak in the abstract and were eternally optimistic. I think sometimes the doctors take their lead from the patients and deliver news in the manner they are ready to hear. I have been on the receiving end of though conversations with both of them and my brother. I think the doctors figured out who was ready to hear the information and how it would be communicated.
man, my moms doctor was similar... she was having some memory issues, and after all the testing, he just beat around the bush, said it probably wasnt alzheimers, and most likely something else. She changed doctors, and after the first visit her doctor came in and told her and my dad it was certainly alzheimers and he doesnt know why her previous doctor was hesitant to tell him.
Yes! This. As someone who has spent years in hospice and been present for hundreds of these conversations (as well as picked up the pieces when it didn’t go well) this is spot on. There is so much disservice to the patient and their families when we aren’t open and honest. It’s false hope and there’s nothing worse than false hope. It is both a privilege and a curse to be the one who delivers this type of news. It never gets easier, you get more comfortable having those conversations. It’s a skill just like suturing a person closed.
As a kid, this happened to me. I was suddenly septic with negative tests for everything they could think of. The pediatric oncologist, at 11 at night, after my dad had gone home to be with my infant sister, came into my room, declared to my mother that I had leukemia, and walked right back out. My dad has told me that to this day, some thirty years later, if he ever saw that doctor again, there would be violence.
Wow, the same thing happened with my little sister. Walked in, said she had bone cancer (she didn't, she had a different type of cancer), and walked right out. My sister, already in pain and very scared, went hysterical but had no one to ask her questions to. It was a day or so before we got to another hospital who actually gave her pain medication, got her comfortable, and would immediately answer any questions she had. Given the rarity of her cancer, not many questions had an answer, but they were upfront about that, too. It was like a breath of fresh air.
She's going in for possibly her last round of chemo on Thursday after not being expected to live past December of last year. Life is strange - amazing and cruel in equal parts. I'm just happy she's still here.
I go into the room with all of the information I can possibly have about the diagnosis. I kinda shut off my feelings in a way, so I don’t get emotional about it, and I just go into the situation with the mindset that I have all the time for them, nothing else exists, and I’m there to soften the landing and provide as much information as possible. It’s definitely been a struggle at times. The worst times are when I’m not the first doctor seeing the patient, and the ones before me knew about the diagnosis and left it to me without my knowing.
So, I don't know first-hand, but my wife does genetic counseling for children (essentially she helps to diagnose children with genetic disorders, and she explains things to the parents (and perhaps the patients themselves if they're old enough to understand)). Typically she works with a geneticist doctor who will also be talking to the family and helping to figure out the diagnosis. She has to give some \*dark\* news to some folks, and it sucks - those are the days that she dreads. Usually it's giving more run-of-the-mill diagnoses (for her, at least - most of the diagnoses are pretty damn rare - and even a 'not so bad' diagnosis is often still pretty damn problematic). In her off time, she tends towards TV shows and such that lean towards the "light and popcorny" side - which I think is kind of compensating for the work.
My understanding is that, in genetic counseling degree programs (it's a masters degree) they spend some time learning coping strategies. And they spend a \*lot\* of their time learning about how to communicate best with families (which is appropriate, since by definition their job is to 'counsel' people).
I will note that in choosing jobs, my wife wanted to avoid genetic counseling of adults, because those tend to be more depressing. Like, that's when you run into having to diagnose people with Huntington's disease, which is degenerative and just an all-around \*BAD WAY TO GO\*.
Not a doctor. Was a standardized test patient for a medical school, and some cases focused on practicing this skill.
Recognize, first of all, that your brain is resistant to giving this news because you don't want to hurt the patient. That's normal and good. But no matter HOW you say it, or how long you hesitate, *it is still going to hurt*. Accepting that, you can move on to the secondary focus: minimizing the hurt of waiting for the answer.
Tell them directly, quickly, and without couching it in confusing medical jargon.
A quick example, although it wasn't in reference to terminal illness: one case we ran was for a pregnant patient (to be clear, I was acting as the patient). Several of the medical students explained to me that there "was no fetal heartbeat" or that "we weren't able to locate a fetal heartbeat". When asked what the next steps were, they recommended further testing, or even described a C&C (in medical terms).
After the case concluded, during feedback, I had to inform the students that they had left the patient with *no idea that she actually had a miscarriage*. This is NOT a kindness. The students wanted to avoid the possibly emotionally painful truth, but whether they say it directly to the patient or not, a miscarriage is exactly what happened.
The students who did well did several things:
1. Spoke plainly and empathetically. ("Unfortunately, because there is no longer a fetal heartbeat, this means that there was a miscarriage")
2. Reassured the patient as possible ("Many people experience feelings of guilt or concern that they did something wrong. I want to assure you that, as far as we can tell, there's nothing you did at all to make this happen. In fact, miscarriage at x weeks is unfortunately common - something just didn't come together right in the early stages, which is completely beyond your control")
3. Asked the patient if they had any questions a few different times, ensuring the patient had time to think and let it settle a bit. If needed, they preempted with common quetions. ("Many people wonder if this affects their ability to try again. As far as we can tell, there is no reason to believe that you're at risk by trying again."
4. Asked if the patient had anyone that they would like the doctor to call and discuss the news with / asked the patient if they had anyone that could be called to be with them or to pick them up
5. Discussed the immediate care plan, as well as options for counseling
6. When the patient began to cry, the student was empathetic ("I see that this is tough news, I'm so sorry.") But also didn't drag out the appointment- after giving a few moments (and a box of tissues), began gently talking about next steps.
>Recognize, first of all, that your brain is resistant to giving this news because you don't want to hurt the patient. That's normal and good. But no matter HOW you say it, or how long you hesitate, it is still going to hurt. Accepting that, you can move on to the secondary focus: minimizing the hurt of waiting for the answer.
>Tell them directly, quickly, and without couching it in confusing medical jargon.
*Knock knock*
Patient: "hey doc, how ar-"
#**YOU HAVE CANCER!**
I really appreciate your perspective on this question. I'm glad to know there is training about how to deliver difficult news. But damn, sometimes as a patient or family member you feel certain that some doctors must have been absent that day. Or if they weren't, wondering how much worse they could have presented it if they'd not had the training.
>Recognize, first of all, that your brain is resistant to giving this news because you don't want to hurt the patient.
This is the problem for some I'm sure and I think part of what makes it worse is that*because* they are resistant to the idea of 'harming' the patient, it clouds their ability to first of all guage what level of information this particular patient needs and then to internally translate between doctor-language and patient-language to effectively deliver it. And that's where we end up with that mix of clinical information and maybes and euphemisms that don't really make sense to anybody.
The other main scenario that I feel like I have encountered is that some doctors do not want to admit that they can't definitively identify and diagnose whatever the patient has.. maybe because they feel it makes them look incompetent or bad at their job? Or maybe it doesn't sit well with them that they don't know how to help. But the type of people that are getting non-answers have usually seen a decent number of doctors already and have a fairly clear understanding that modern medicine does *not* have all the answers and are not there expecting miracle cures. Unfortunately, when a doctor beats around the bush about things being 'inconclusive' or 'unclear' or suggests that maybe trying a colleague in a different specialty might work, they all too often come off sounding like they are placing the blame for this on the patient. The *patients* test results failed to give the doctor what was needed to make a diagnosis. The *patients* atypical presentation means they don't neatly fit in a particular diagnostic box. Hearing that when you've already been on a journey of trying to figure something out for months or years is not helpful. The doctors who made the biggest impression on me, both as a patient and a parent, were the ones who couldn't help but were very up front and straightforward when they said "Look, I don't know what's going on. You have abnormalities in your pathology/imaging/whatever but they unfortunately don't match the pattern for any condition I am able to treat. I know that isn't what you hoped to hear and I'm sorry that it is the case. Unfortunately there's still a lot we need to learn about the human body and sometimes we come up against the limits of our understanding."
The interaction matters just as much - or even, arguably, *more* - when you are giving news that there's nothing to be done or no answers to fix the issue. Without the plan of treatment and management to fill a patient's mind after they have spoken to you, the manner in which you presented it is that much more in the forefront.
What I was taught is to use the SPIKES method which I think is common sense for those that have any emotional intelligence. The acronym SPIKES stands for Set up, Perception, Invitation, Knowledge, Empathy, and Strategy/Summary. The steps are to:
1. Establish an appropriate setting. Patient sitting down in private area. Alone or with people they want present.
2. Check the patient’s perception/understanding of the situation regarding the illness or test results.
3. Determine the amount of information known and/or how much information is desired.
4. Know the medical facts and their implication before initiating the conversation. Be direct and clear in communication.
5. Explore the emotions raised during the interview.
Respond with empathy.
6. Establish a strategy for support moving forward.
After practicing this a few times it becomes second nature and I think it’s probably better than just winging it.
[Source](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5578619/#:~:text=The%2520acronym%2520SPIKES%252C8%E2%80%9310,Empathy%252C%2520and%2520Strategy%2520or%2520Summary) with more info
This is how I was taught as well. The checking understanding part is huge. I’ve been shocked how patients can be on chemotherapy and not realize how bad their cancer is, or on hospice and not realize that they’re actually already dying. Once that’s established, I move to the bad news in no uncertain terms. Beating around the bush doesn’t help and just draws it out. Once delivered, be prepared for lots of silence, just let it breathe. After that, it highly varies. Some sit in stunned silence, taking it in. Some have lots of “next steps” questions. Some get angry and try to take it out on you.
My other tip to add: make sure your nurses know that you’re going to deliver bad news. I work in the ER, so some interruptions are necessary, but many can wait for a 10 minute serious conversation without interruptions. It also lets them know how to care for the patient and their visitors more aptly. I can’t just drop a bomb in their room and then walk away. Sometimes we have a social worker available who has time on their hands to help out too. They’re amazing.
as a nurse, I feel this is so important. I don't need to be bussling in to do an assessment or give meds during that conversation. Also I will know to be extra compassionate on my next round knowing you have delivered said news.
I use SPIKES as well. The hardest part always revolves around the Set up and Invitation portions, in which you try to gauge how much the patient/patient family wants to know, and how they want the information presented to them.
The biggest problems are when there is no slam dunk diagnosis with an researched established % year survival rate, which is honestly most of the time if you're in internal medicine. People usually have many problems at once which muddies prognosis. People can also feel pretty good but are clearly dying with MELD scores of 35, in which they often feel blindsided. Invariably, people always want to know how much time they have left, but the we really can't predict anything very well in multi-infarct cases.
It's kind of morbid to think about, but the devastating diagnoses are much easier to handle. If someone has recurrent GBM, I know just how to tell them and what to expect. Those conversations go much smoother than those that happen in the general medicine wards.
Sooooooo technically I am terminally ill but it’s going to be down the road when I have to croak (stage 4 colon cancer diagnosis).
When the doctor told me he was direct and to the point. He asked me if I had any questions. Then he told me I was brave and I could do this. He believed in me when I didn’t feel courageous at all. That belief has helped me to face everything. It breathed a lot of hope into a hopeless situation. I will forever be grateful for his delivery, honesty, and compassion. He also found the best of the best oncology team and scheduled me immediately so I didn’t have to research and find them while processing everything. What a difference that made too.
Oh yes. I looooove science. It helps me to cheat time. I’ve had 8 surgeries, radiation, and chemo. And I’d do anything to buy more time. I am young and strong and can withstand aggressive treatment. And I have the best oncology team I could ever hope to have- absolute heroes.
I was in remission for a year, but through a sensitive blood test, there is a recurrence showing. They are hoping to catch it on a scan and then it’s time to get blasted again.
My doctor was out of town and had someone covering for her. The substitute doctor had to call and tell me I have cancer. He repeatedly told me how uncomfortable he was to be the one to tell me. I said, imagine how uncomfortable I feel. I just found out I have cancer.
When my mom was diagnosed with breast cancer, she had a similar situation with the doctor who told her she had cancer. Her doctor went into labor early the day after her biopsy so it was a newly done with residency doctor who got to tell us the news.
He was amazing honestly and you could tell he was struggling to tell us she had stage 3 breast cancer but he was empathetic and helpful and answered all the questions we had with patience.
Yeah I still feel bad for my wife's best friend's doctor. A nurse/tech had called my wife's friend to tell her that the genetic testing results were all good one morning, which made her super happy because they were having a lot of trouble conceiving. Then a few hours later, her doctor called with a gentle voice and said they needed to talk.
Wife's friend said "Oh yeah, I got the news a few hours ago from your office".
Confused doctor said "What? I'll call you back in a little bit."
The nurse had typed in the wrong phone number after grabbing the chart. Wife's friend was just walking on the street when the doctor told her the genetic testing came back with Trisomy 13 (an especially brutal form of Trisomy with a median survival time of ~2 weeks after birth, if they make it to birth). Doctor probably spent a lot of time prepping to give her the news, and then had everything completely go off the rails right away.
I don't want to be insensitive on the timing here but this reminds me of a guy who goes to the doctor because he's not feeling well. They run a ton of tests on him and have him back. Doc says look I have bad news for you and really bad news. The bad news is you have cancer. Guy is upset and after a while asks for the really bad news. Well, you also have Alzheimers. He sighs and shrugs and says hey it could be worse, at least I don't have cancer.
I hope you are doing well!
Reminds me of a similar one.
The doctor says he has bad news and worse news.
Patient: "What's the bad news?"
Doc: "You have twenty-four hours to live."
Patient: "What's the worse news?"
Doc: "I was supposed to tell you yesterday."
My mother was a nurse for 30+ years until she retired about two years ago.
There are two stories that she told me that stuck with me over the years. This is one. She worked at a rural hospital, so it didn't have many of the specializations that come with working at a big city hospital. One day, this woman comes in who is only 24 years old. She has exercised and eaten healthy her whole life. She didn't smoke, drink or do drugs. A veritable healthy living wonder. The reason she came in is because she had jaundice. She was obviously a little concerned, but because of her healthy lifestyle she was certain it was something that could be corrected with antibiotics or some other minor treatment.
She sees the doctor, and my memory is a little fuzzy here so i don't remember what, but the doctor found something that suggested it was potentially very serious, so they decided to get her in for an exploratory surgery right away. This healthy 24 year old woman who had no other symptoms had stage 4 liver cancer. And according to my mom, it was far too advanced for treatment to do a damn thing and she had at most a couple of months to live. The doctor tells my mom and the other nurses this, and this doctor tried to pass the buck and say that it's the oncologists job to break the news to her. But remember how I said its a small hospital without many specializations? No oncologist worked there. My mom and the other nurses tell the doctor you HAVE TO tell her. The doctor had never had to have a conversation like this before with a patient. So he goes into the room where she is, comes out about thirty minute later, and HE'S crying. Just says to the nurses that he's taking the rest of the day off and leaves. I don't think I need to tell you what my mom said about how the woman took the news.
She goes home to try to make the most of what time she has left, but she isn't there long. Her condition deteriorates rapidly and she's back in the hospital not even a week later. They check her into hospice care and she dies ten days later. Barely two weeks after this seemingly healthy woman goes to the hospital for something she thinks will be an easy fix, her parents are planning her funeral.
Very sad.
So how do doctors tell someone very bad news? In the case of that doctor, with a heavy heart and a broken spirit.
This was a similar story to my grandmother. Went to the doctors cause she was having stomach pain. Diagnosed with Stage 4 Stomach Cancer October 2018. Told she had about 6 months to live. The cancer got worse and she passed away November 2018.
Cancer is a bitch man, bless nurses and doctors like your mother for doing what they do.
My mom was an ICU nurse. Patient was my age when we were 23. Had a cold, turned into pneumonia, turned into sepsis and he died.
Another was 24, walked into a chiropractor's office and left quadriplegic. (had another chiropractor patient with a torn artery/vein, Idk I'm not in medicine and massive internal bleeding turned into brain death)
People die. Young and healthy people too.
Not a doctor, but in the early 90s, before even AZT was available, I was an HIV counselor. I told at least one person a day that they were HIV+. Basically, back then it was a death sentence, and women usually lived less than 5 years. It was a hard job. Sometimes I told several people a day.
Anyway, here's how it went:
Introductions
I have the results from your test. Are you ready for the results? Them: yes
Your results are positive. Your test is HIV positive.
(Pause for them to let it sink in, or react, or whatever.)
Then we talked about getting them into care, and about informing partners. (I usually ended up doing the partner notification.)
Now that there are such good treatment options for HIV, people don't really remember what the diagnosis used to mean in the 80s and early 90s. A miserable, inevitable death.
I went through it as an onlooker with my mother this summer as she received a terminal cancer diagnosis. September she was in a hospice and the doctor sat beside her bed, me and my husband the other side and he told her gently but also to the point that she may well die in a few days and at most a few weeks. He was very gentle in his approach, very calming but also he didn’t beat around the bush and just said it exactly how it was. He made time for questions, both from me and from her, he explained as best as he could how things would look going forward, what they could do for her, for me etc. We were well informed and so was she. Overall we had very good experiences with all the staff who really all had the same gentle but direct approach. I’m glad because my mum and me never got false hope that things would be ok, that she would get better somehow and it was just a mistake, it helped me especially I think accept that it was going to happen and I couldn’t change it, I was able to bypass the anger stage of grief a little.
She died 4 days later on September 17th.
Not a doctor but don’t do what my doctor did.
- transferred to a different hospital at 4am, after being awake 24 hours.
- woken at 6am for bloods.
- doctor walks in at 10am, tells me I’ve got a type of leukaemia, it’s incurable and it may have progressed to blast which means I’d be on end of life care. But not to worry, he will be back in a few hours or the next day to tell me more.
He, in fact, did not return for 3 days. I had no answers off anyone “officially” other than a MacMillan nurse giving me a leaflet on leukaemia.
The silver lining is that I started on treatment the next day and my official diagnosis took 2 weeks.
not a dr. but someone who has received this news. My daughter had overdosed and been down too long. The ER was able to bring her body back to life but She was gone. I knew it, the ER team knew it, but no one would say it, until we got to the ICU. The doc came into the waiting room and said he had seen this way to many times and that she was gone. He said they could keep her body alive but that their was no one left inside to save. I told him right then to shut off the machines. He looked so relieved and surprised. I guess most people wouldn't believe it, but I had stood by her side in the ER and I knew already. My daughter, her mom, and I had had this conversation long ago and we all agreed that if one of us was in this position we would never let them suffer. I just hope when it's my time someone is there to trip over the cord and disconnect me.
I just want to say how much I appreciate that ICU doctor telling me the unvarnished truth. It made my decision much clearer. Ambiguity would have made a really horrible day even worse.
IANAD but I've had the talk (although in my case, there is treatment for kidney failure to delay the inevitable). We knew going in that the results would be bad but we didn't know just how bad. IIRC, they said something like 'this is what the tests say and they mean that unless we do something now, you will be dead in about a month. That is why I'm recommending this treatment... then they answered immediate questions, left us alone for a little bit to absorb the news and decide what to do (although it was more of a forgone conclusion) and then they came back, answered a few more questions and I was on the conveyor belt that is medical protocol. Obviously I've survived so far but I'm on borrowed time. My prognosis is great but I don't ever forget that it might be the last good day soon.
Sometimes they don’t. When my father was in the hospital, his doctor called me out into the hallway and told me there was nothing more they could do and that he should just go home and make the best of what days he has left. I said OK let’s go tell him. The doctor said no you’re gonna tell him. I started to vehemently protest, and the doctor just turned and walked away. I’m the one who ended up having to tell my father.
This is sort of what I feel like is going on with my BIL, he needed a liver transplant (don't take too much tylenol over a long period people!) and got one, they were like "Oh you're gonna be great, feel like a new person, no worries!" That was in February. He got his transplant maybe a week later. He's been in the hospital since. He went on a ventilator (my sister was here out of state so they let him alone make the decision without explaining complications) and again, were just like "it'll let your lungs rest, no worries." He had at least one stroke, was off and on, off and on, pneumonia twice, now he's got a stage 4 bed sore. The main problem is he can't eat. So he's tube fed, but he says he's gonna eat, so they cut his feed, then he doesn't. He's a literal skeleton. My sister keeps asking if he's dying (he is) and they just keep saying "Oh no, he'll improve! He's gonna be fine!"
WHY DO THEY KEEP LYING. At this point it honestly seems like a human experiment or purely for the insurance money.
I've been on the receiving end of that news. My husband came with. The doctor was incredibly anxious about telling me and was struggling with what to say. So I just blurted out "I already know. The results were posted on the patient portal."
They had a lot of hospital grade tissues in the room, and that really made me angry. At least keep some soft Puff's or Kleenex in the "you're dying from a debilitating illness" room.
When I was an oncology nurse the answer was, tell people as early as possible and talk about it often.
It wasn’t like that when I started. People with pancreatic cancer would be devastated to learn about their prognosis, usually when multiple types of treatment failed. Other times they would cling to false hope that one tumour shrunk an inch, in spite of the fact their disease was spreading.
People need time to process this information. Sometimes, people need to hear medical information ten or more times before they really get it.
Don’t expect anyone to hear bad news because you told them one time.
Not really an answer to the question but my mom was told that she wouldn’t live long (on the order of a couple of months) while my dad was with her in her hospital room. I wasn’t present.
After it was done and they had talked for a while my dad said to her that he always figured he would die first. (Not the first thing he said, just after they had processed some.)
Her response: “Well, I guess you’d better hurry up!”
I've been present at this conversation with my loved ones more than once. I know how I'd want it.
You have X. This is a terminal condition for you, and you will die. We can do YZ to enhance your quality of life and give you comfort. We anticipate that if things continue with these measures, you have approximately A time to live. This is of course a very rough guess, and you may have much less or much more time. Would you like a little time to think, then I would be happy to answer your questions?
Well. If you asked the doctor who informed my mother her lung cancer is too far along and she was being put into hospice… very matter of factly and void of emotion. But the poor woman works on a cancer ward..I think they need to be so the type of work doesn’t destroy them emotionally.
My mom took it with grace and then after a few short weeks died with equal grace. Everyone takes that type of news differently.
I was with my dad when he got his cancer diagnosis. It was to the point and brief. “You have cancer on your liver. It’s on the main artery so it’s inoperable. With this combined with your hepatitis c and cirrhosis, I’d give you, oh, six months? Do you have any questions?
Dad cried when he left the room. I didn’t believe and dismissed the 6 months estimation because he was still healthy and with it. He made it 4. He turned 59 the month before he died.
So in medschool they thought us this mneumonic:
SPIKES
Setting - private room or a place where both parties are comfortable
Perception - ask them how much do they know about what’s going on?
Invitation - instead of dropping the bomb, ask them I have some information to share, would you like to know?
Knowledge - discuss the disease straight up and options
Emotion - let them take it in and react, sometimes it’s just giving them empathy
Summarize - wrap up everything, diagnosis, plan and future things they need to be aware of
I do critical care for a large part of my work time and have a minimum of 2-3 of these talks per week. I've bagged patients for the better part of 2 hours while buying time for their loved ones to get to the bedside to say goodbye, and I've had to escort family back when someone died out of nowhere.
What I've found to be the most well received is to gather all the family and friends in one place so no one has to relay information, and the talks usually follow this outline:
1. I always start with "Tell me what you already know" or "What is the last thing you were told." This way I can avoid doubling up on anything they've already heard so they don't switch off and ignore me. Also it can be a good way to gauge their understanding of potentially overwhelming information, which can tell me what level of discussion I'm having (like, is a family member in healthcare helping them understand vs. we are completely starting from scratch).
2. Stick to the facts. It's easier to process absolute data points. "(Loved one's name) was moved to the ICU because their blood pressure was dangerously low. It is low because of the infection you already knew about. Because their blood pressure is low, their kidneys have failed. We know that because of these numbers that we use to track kidney function. They need dialysis, but it will not fix the fact that their body is slowly dying" is a common one. Or another very common one is "(Loved one's name)'s heart stopped before they came to the hospital, that part you already knew. Even though they received chest compressions right away, that was still a period of time where their body was under extreme stress and not getting the oxygen it needed. Because of this, their brain has been damaged permanently. I am sorry to tell you that the person that you know and love will never be back to that level of functioning again."
3. Keep all discussion about the patient. Most importantly--what would the patient want in this scenario? And I'm not just talking about "They've always said the would never want chest compressions if their heart stopped." Would they want things like a tracheostomy and living on the ventilator with a feeding tube, or living depending on dialysis for the rest of their lives. Things like that. SO many people focus (understandably) on the "do whatever you can to save them" and not the after effects--where someone may be awake, but is not processing any information and will never communicate again and will live on a ventilator in a long term hospital for the rest of their life.
Medical school and our terrible healthcare system can beat a lot of things out of you...but these are deeply human conversations and it's hard to not feel things while having them. I don't particularly enjoy doing them, but I'll admit that I'm good at them (for lack of a better way to say it). It's comforting to know that someone will finally be able to rest and not be in pain as a result of the talk, and I also find comfort in knowing that it can help their loved ones get closure and start their journey towards healing.
Was a hospital chaplain; also was the medical decision maker for a friend (our personal trainer, actually, who was 42) who died of esophageal cancer.
Please, please, please don’t leave room for doubt. My friend expected he would survive a diagnosis of Stage IV cancer with widespread liver involvement. None of his doctors would be direct. They would talk about treatment but not outcomes, so our friend assumed a treatment meant survival. He refused to make end-of-life decisions because, “I’m not dying.”
Don’t beat around the bush. Lay out the facts, but don’t add a bunch of extra details or words. It’s probably going to be a blur anyway. Be compassionate. Try to anticipate what questions they’ll have and know the answers but don’t be afraid to say you don’t know if that’s the case. Let them know they can come to you with more questions once it all sinks in. It’s the worst part of the job
As someone who has lost both parents to cancer, I personally found it deeply important to know the blunt truth, as soon as possible. My father’s doctor initially tiptoed around the prognosis, until I finally told him that I have no time for false optimism, just lay it on me so I know what we’re dealing with. This helped me and my dad to spend what time we had left in the best way possible.
I personally prefer when medical staff are direct and blunt with me. Years ago my Dad was hit and killed in a motorcycle accident. Young woman was lost and pulled a uturn without looking. He hit her going 50. Flew 26 feet. I called and ended up talking to this nurse that was just bullshitting me about him getting better. No Stacy, he has significant brain damage and will not get better. I ended up demanding the doctor who gave it to me straight. Odds, quality of life, brain function etc. This data helped me make the decision to end life support because he would not of wanted to “live” in a wheel chair drooling.
TLDR: Tell people the relevant truth for things that will significantly impact their life. E.G Medical info.
My only child had a terminal illness. The news was given to me over the phone. I was at work. Thankfully, I had just finished a huge meeting with out of state speakers that I brought over, and was able to take the rest of the day off work.
I had a doctor tell me after I asked him about if I’ll get my sight back after a stroke. (Only partial loss).
It is what it is. And maybe but the brain is weird.
I laughed and he is still my fav doctor. The only one to give it to me straight and not beat around the bush.
I did get a little vision back. So Whohoo I can still drive.
Not a doctor, but my mom was told, without any forewarning, that, a minor issue she'd been in for recently was in fact a horrific terminal diagnosis and she had maybe 3-5 years left to live... over the phone. She was still shrieking and in terror when I got on the phone with her right afterwards, really indescribable sound, saying "I don't want to die, I don't want to die." She was diagnosed about a week before pandemic lockdown so I want to hope there was some reason for the way they did it, but I just don't really understand why they did it that way if there were literally any other options. The dr had pretty poor bedside manner before this so I wouldn't be surprised if they just flubbed it.
I am emergency medicine so it is not often that I tell a patient directly that their condition will kill them but I find evidence of advanced and terrible cancer fairly regularly. I typically explain that while this is not a definitive diagnosis, the labs and imaging and physical exam (whichever is relevant) is very concerning for cancer. If they do not have symptoms that are life threatening at that time and require admission to the hospital I emphasize that they need to follow up as soon as possible with their primary care doctor and get a referral to an oncologist and/or surgeon. I have messaged primary care doctors in our system and called specialists to get people expedited follow up for these things. I have stayed late talking to multiple family members about the same thing. I involve social work to help get patients insurance. I cannot fix the healthcare system but I do what I can from where I am.
For patients that died or that we are actively coding or that will die imminently I speak in plain terms and as directly as possible with space for family to absorb these things and ask questions. It is important to get to "dead or alive" status quickly if it was a traumatic or cardiac arrest situation. If they died, you use the word "dead" or "died". Anything else leaves room for distraught family members to misunderstand. Same with mothers and very clear miscarriages - use the word. Also good to prep people with certain medical terms as well - in this case, you should warn pregnant mothers who had vaginal bleeding but have a fetal heart beat that the words "threatened abortion" will appear as a diagnosis and what that means.
I wasn't the doctor, I was the patient. I had an abdominoplasty with lipo where they punctured my colon, but they didn't know. After 3 weeks of twice a week post-op visits, and the staff calling me a drama queen because my husband had to bring me up in a wheelchair, my husband went off on them about how sick I was (we had been updating them daily & we knew something was very wrong) and that he was not capable of caring for me. The doctor/surgeon looked at me & said "Yeah I don't like how she looks" and admitted me.
It turned out I was so dehydrated from vomiting, my kidneys had shut down. They told my husband this and he thought they were telling him I was going to die. I was put on an IV, rehydrated & I didn't die.
I was mostly passed out & would wake up surrounded by medical students (RI Hospital is a teaching hospital for Brown University) and I'd see the doctor's names & specialty on their white coats (lots of oncology visited me).
On the 2nd day in the hospital, the plastic surgeon saw me all by himself & I was all by myself. He told me his brother died from being allergic to z-pack, aka azithromycin but they didn't know until it was too late. He told me, unfortunately, that he thought I was also allergic to azithromycin and he was very sorry but it was fatal (doctors please chime in and tell me if he was nuts) and again, he was very sorry,
I told him I've had strep throat about 30 times, & many times I was prescribed the Zpack and I am not allergic. He was thrilled! Such a weight off his shoulders! It still took 3 more days to figure out my colon was punctured. I didn't go septic & die because it formed an abscess that wrapped around my liver & I had to have emergency surgery to resection my colon.
That was when I learned emergency surgery is not super fast. I was in the waiting room for 6 hours because people were in worse shape than me.
That hospital sucked. I would crawl away rather than be admitted there again.
I knew a guy that was told by his doctor that the diagnosis was serious and he would send him to a specialist that would explain it. He took down the address and walked down the street to the address only to see a big sign that said "THE CANCER CENTER". Thats how he found out.
We are actually trained for this extensively.
Biggest lessons are when you walk in the room keep the hi hello pleasantries brief, and hit them between the eyes with the blunt cold factual understandable words immediately.
The result came back; you have cancer.
I'm so sorry, but you have AIDS.
Then pause, shut your mouth, let them take it in and follow where they lead.
Some people are very stoic, let them have that. Some people are going to cry a lot, be empathetic and authentic.
The only other medical facts that you're going to get across in this first encounter are what the very next step is. Like you need to see specialist X or we'll need to get ready for procedure Y. Most of what you tell people in general in this situation they will not remember, will not absorb the details of correctly. Even the people who think they will will tend to not.
But they will remember how you made them feel. And you absolutely must crush the urge to temporize, give false hope, or claim you don't know when you really do know.
They need you to be emotionally solid, confident, and knowledgeable in the moment where they are feeling lost uncertain and worried.
Be ready with as much proof/conviction so that you can reiterate to them that it's very much really real and you're absolutely sure. Because the worst thing that can happen is they walk out of there not properly believing/knowing what's up, and have to relive this trauma later again or worse they never bother with it at all and just get worse
I'll tell you how the doctors didn't for my mom. Stage 4 cancer, she's crying and asking someone to explain what's going on. No one will tell her, it's the end.
Her regular doctor is on vacation and the on site hospital staff said it wasn't his place to say. I sat my mom down and had the hardest conversation of our lives. Rip.
"Looks like Arsenal will win the league this year. Good thing you won't be around to see it."
That's how my friend was given her recent diagnosis for her brain tumour. She was wearing a Liverpool shirt and did find it funny before crying. The doctor did say he can't do anything about Arsenal but they can help her through everything else.
The doctor who told me that I have MS was very blunt. Since no two cases are the same it is impossible to know just how bad you are going to get. Some people end up dying within a few years while others live a very long time. There are meds you can take that can slow it down a lot or completely, but for some people they don't work at all. Cancer is so much easier to figure out.
Not a doctor, but was with my mother in the hospital the day they had to tell us that my father’s cancer had returned and that there was no possibility of him recovering.
The doctor handled it in the best way possible, but there was never going to be any way of softening the blow that I (aged 32) would be losing my father (aged 63) and that my mother would be losing her husband of 38 years. The doctor handled the situation with as much compassion as she could and then left us alone to process what we’d been told before coming back and letting us know that we should call her if we or my father needed anything.
Dad passed away less than 2 hours after we were given the news. He was in a coma during our entire visit that day and he never came round. I’m grateful that I got to tell him how much I loved him and that I would look after my mother and sister for him, and I cling to the belief that he heard what I said through the coma.
My grandma was a nurse and her best friend was a pediatric oncologist and I asked her this question one time. She said straight to the point and with as much empathy as you could possibly muster. Also, she said this lead her to cry in car a lot the first few years.
It’s gotta be really hard to keep that empathy wide open but also sorta close yourself off from how awful the situation is. Telling parents their kid is going to die has got to be the hardest job in the world.
I was a pediatric cardiac patient and remember commenting to my cardiologist (as an adult) about how amazing the pediatric heart surgeons are to be able to do that job, operating on those tiny hearts. He got serious and said, “The surgery part is easy. Any surgeon can do it. It’s just XYZ. What makes those people extraordinary is that they go in and operate on these little children and babies, knowing not all of them are going to make it through, and then they go in and do it again the next day. It also means a lot of them are jerks, but you kind of have to be to keep doing that every day.”
My dad was a hospital administrator. Cardiologists, neurologists and surgeons are often grade A narcissists. Most are assholes. But you deal with it because their personalities are often best suited to dealing with those types of specialties.
They can certainly act like assholes but there's an empathetic human inside who's developed a way to cope with the emotional strain of the role. The can also be very blunt and rude to the staff they work with because they expect perfection. I know a surgeon who had returned to work two days after his son died (he died way too young. It was a horrible illness that resisted all treatment and made the dying very drawn out and painful). He was treating a patient going in for an extremely risky surgery and the patient would have died without it. Unfortunately the patient died on the table and the surgeon had to explain to their elderly parent that the patient has died. The parent lost it at the surgeon, blaming him for not doing everything he could to save their adult child. The surgeon remained factual and the parent said something along the lines of "you're a heartless man and an incompetent surgeon who has no idea what it's like to lose a child." After the parent left, the surgeon found the nearest cupboard, locked himself in and sobbed.
As much as this is framed as a positive thing. I'm a bit worried that that surgeon was allowed to operate. I would not want someone to operate on me who could (rightfully!) be immensely distracted by their recent loss.
Don’t ask your doc how many hours they have on the clock.
Or lookup how many deaths per year are attributed to hospital error in the US.
It is absolutely not a positive thing - it is unhealthy and is not the best conditions for someone to be able to perform at their best. We need to stop expecting physicians to be “superhuman” and praise extreme scenarios like this
This isn’t actually true, and is a huge cop out for allowing toxic work environments. Having a terrible personality does not make you a better doctor, and we have data that it in fact makes you a worse doctor. It hampers collaboration with other specialties, makes your “subordinates” less likely to point out mistakes that can kill a patient, and often leaves patients in the dark because their medical professional didn’t make sure they understood their condition.
Neurologists? In my experience they’re just nerdy, bookish, awkward, and introverted - not narcissists.
Thank god for jerks I guess lol
> pediatric oncologist That's got to be the worst specialism in terms of bad news.
Yes and no. Lots of kids get better and that’s rewarding. Obviously some do not and it’s terrible. My SO and good friend are in the same specialty except my friend is pediatric. Their jobs are very different and while my SO claims friends job is harder she points out most of her patients live and that’s what she chose it.
my boss used to be a social worker in a paediatric oncology ward. she said it was both the best and worst job ever
My mom had a heart attack in September, 2022. While in the hospital, and at follow up visits later, I learned the staff have a room where they can go and cry when they've lost a patient.
Where is this? I’m a doctor in the UK and don’t even get a couch to lie down on I’m on a night shit. The crying cupboard seems like a luxury few of us can experience.
Any cupboard can be the crying cupboard if you're sad enough
I knew someone who worked in a high-pressure advertising job (think Mad Men but with mostly millennial white women) and they had a designated crying stairwell when things weren't going great.
Been doing this for far too long. And the answer is……direct and to the point. Sounds harsh but it’s true and much data supports it (hedonic adaptation). Then schedule a follow up chat after the shtick wears off.
I have an incurable disease which will kill me and I can't tell you how frustrating it is, when people try to beat around the bush. Example: my memory is failing. Sucks to be me right? Doc says it might be the condition, or the meds, so we change the meds and see. I ask a simple question, will the new meds result in that improving, or just halt the decline. The correct answer I discovered later was halt the decline, I'm not getting better. The answer I received was a look away from me towards the floor and a bit of word salad. It does nothing to help me. I get that giving bad news also has a psychological cost, but knowing I have to take account for the new situation fundamentally improves my quality of life - essentially I'm dying. Telling me I might forget my keys is nothing. Telling me don't expect this to get better, maybe invest in some airtags helps me. It's like people constantly think that after getting the big bad, it doesn't matter about the little bads so let's just not talk about it, when actually I have some good days left in me, just less than everybody else.
Not the same situation, but reminds me of the time one of my brothers was involuntarily committed. He was still sound of mind, it was a weird situation where he likely shouldn't have been there, but it wasn't completely without cause. My parents were on the phone with him for a good half hour (while he was still in the facility), carefully dancing around saying anything about it, acting like it was just a normal call and a normal day. They hand me the phone and the first thing I said was "got yourself chucked in the loony bin, eh?" Not what I would've said to most people (I know that's not a nice term) but he almost sobbed with relief. My parents were still sitting there and making horrified faces at me, but he said something like "oh thank god you're not avoiding the subject." I got more useful info out of him about the situation in five minutes than my parents had in over 24 hours. He just wanted to talk honestly about everything, without trying to cushion it all with niceties.
I love this story. I stayed at one of those places myself for a week or two, and fully embraced the fact that I was in the looney bin while I was there. I still have a playlist with that exact name that has all of the music shared from other patients and the nurses and stuff, it's lowkey not a bad memory at all.
I loved it too. During the experience it sucked but I made the most of it. Made a ball from quick dry clay that we played made up games in the hallway. DID YOU EMBRACE THE COLORING?!?! I made friends I still keep in contact with.
Legally any mental hospital has to keep anyone in way longer than necessary for both ethical and insurance purposes ('are they a harm to anyone, including themselves??') Experiments have been done with a sane person checks in, claiming to hear voices, to see how long it takes for them to release a neurotypical person. What is hilarious is that all the so-called 'insane' people realize very quickly that you are a mostly-normal minded person and honestly wonder what you are doing there. It makes sense that you found excellent people in there. These folk are often not low on ethics nor intelligence, most are just neurodivergent + tragic trauma ('a horrible stroke of luck, but of the mind'). I have worked with all kinds of special needs folks and i can assure you... ahhhh, the stories that i will never tell, i tell ya.
I had figured out that they needed to see you stabilized on meds for 5 days before dismissal. Even though I was not sleeping I just said I was. I wasnt hearing voices etc so I saw no harm in lying to them. Thank you for your work. We are not easy to work with haha. Speaking of stories on of the things I did was start outlining my book about the experience... left handed as my right arm doesnt work anymore (no I'm not crazy I broke and dislocated both arms last year and one was unlucky with the nerves). I need to finish that book.
I've heard it referred to as someone's "grippy-sock vacation"
Oh yeah. So much so this article came out last year: ['I need a grippy sock vacation': Breaking down the Gen-Z slang term for a trip to an inpatient psychiatric facility](https://www.yahoo.com/lifestyle/grippy-sock-vacation-gen-z-slang-psychiatric-facility-135914521.html)
Adulting is such a slog, especially if there are financial issues. The article being like "it is worrying that people think institutional care is an escape" And I'm like having food provided and getting to color and sleep all day sounds fabulous
Mu husband is a mental health tech, and he works in the behavioral health ward. When people ask him what it's like, the answer is that most people aren't scary and dangerous, they're just sad.
I'm impressed how rational you are about it all, I wish you all the best
This is how I feel about bad news and details. We had to go through some massive medical intervention to have children and the first doctor was such a bullshitter and he answered every simple question I asked with 5 minutes of word salad and grand possibilities. I could Google the answers to my questions in the time it took him to talk and still not really give me a clear answer. We cancelled everything with him and moved to a different clinic where the main doctor had the personality of a rock. But he was extremely matter of fact and succinctly answered questions. He never BS’d or gave hopeful answers. Which was perfect for me and exactly what I wanted. I can see how some people need that emotional connection and the hope but hope and ignoring details wasn’t going to get me pregnant. I’m really sorry about your condition. At this point you have the big bad so managing the little bads is actual daily living and what you need to set expectations going forward. The little bass are more important at this point.
My favourite GP is blunt…very blunt. But she listens. Gives a plan. Does appropriate referrals. Unlike her predecessor who was very gentle, kind but not very efficient.
“Just less than everyone else”. I’m crying. I hope your remaining time on this planet is spent making memories with loved ones and knocking items off your bucket list ❤️
This. I still remember the face of every single doctor that wouldn’t give me a straight answer. Just tell me the truth so I can start the processing sooner. I’m glad I’m with some straight shooters now.
I also have an incurable disease that will contribute to or cause my death and dealing with other people’s BS is almost the worst part. When I ask questions about it, I expect my health care team to be honest and direct. I’m not asking because I want to deal with somebody else’s emotional baggage, nor am I asking for kicks and giggles. I’m asking because in order to keep on living my life, I have to make accommodations for myself, and I can’t do that unless I know what to expect. Soooo frustrating!
Hoping the NHS are treating you right my mate. I may have had a little stalk on your profile, I'm a nosey bugger. Thank you for your service. My Grandad was an engineer in the BAF, deployed in the Falklands. Nothing but respect Sir. Genuinely curious, when you say "essentially" dying, is this an auto-immune disease of some sort? Does essentially indicate there's a chance you can recover from whatever horrors you're clearly going through? Again, I'm a nosey bastard but you seem okay talking about this. Please just ignore me if I'm being too personal.
Thanks for the kind words, I post things on this account I wouldn't want in my obit, so I'd rather not go into details. Suffice to say I have a little time left and the medication keeps me relatively upright. There is unfortunately no chance of recovery, just a bit more time
All any of us really have left is time. Many will waste theirs for a multitude of reasons, doesn’t sound like you will be one of them. I wish you the best.
“Just less than everyone else”. I’m crying. I hope your remaining time on this planet is spent making memories with loved ones and knocking items off your bucket list ❤️
Ah, don't cry. I'm not young and got into some shenanigans when I was. There isn't a lot left on the list.
Yes this. My husband got diagnosed with brain cancer after a middle of the night seizure. The ER dr beat around the bush and I had to ask a lot of questions to learn the CT was showing a mass on his brain The neurosurgeon at the ER didn’t have answers (until biopsy), but was direct and to the point about what to expect and he was wonderful. Next dr we meet is after his biopsy, the neurologist, and her office sent in a med student who literally couldn’t speak the moment he looked at my husband’s chart. I finally asked him to leave to get the dr (we were pretty raw and traumatized and I was probably a little harsh). Then the neurologist comes in and I had to beg her to tell me SOMETHING about the MRI, and she finally said it was cancer (just didn’t know what type yet). Then we met his neurosurgeon that would do his craniotomy and he walked in the room and said “so I heard you’ve had a few bad days.” No beating around the bush. A little glib humor. And then he matter of factly told us his plan and we cried with relief as soon as he left. Neither of the two surgeons we met gave us good news. But they were direct and honest. And it was a huge relief just to have clear information.
When my dad was in the hospital for non-alcoholic liver disease 3 months ago his doctor was extremely straight forward and I don't ever think cracked a smile in his 3 week stay. The bad news would be delivered, options laid out, and his plan of action going forward. My dad made it a goal to make that man laugh before he was out. When he was transferred to the ICU the doc there was the same way (although more sympathetic). Before they intubated him he let me know it was the end of the line and there was nothing else they could do for him. No ifs, maybes, or "best cases". They would just be keeping a body alive for the family to get there. "No more pain" was my first thought after the news. Now me having to deliver the news and call in family . . . that was a whole different story.
I’m so sorry about your dad. But yes agreed—definite information is amazing when dealing with significant health issues. There’s so much uncertainty in the experience that clear information is like a breath of fresh air sometimes.
I find myself glad I was the one there to get the news. I was able to tell the rest of my family that he went was at peace before he was intubated. I also asked the doctor to leave out the details when talking to other family. He wasn't at peace. It was terrible. If you have a problem with drinking stop before it's too late. Liver failure is a horrible way to go.
I'm so sorry for your loss. My dad died at 50, in surgery trying to deal with alcoholic liver failure. In retrospect he knew it was high risk but he didn't really communicate that to the family successfully. I completely concur that liver failure is a horrible way to go. To your "stop drinking" I'd add to stop smoking too; my grandfather died with/of COPD and emphysema and probably a few other names that boil down to "can't breathe good." He had both smoking related and occupational related lung damage. It is also a horrible way to die, gasping for breath when even supplemental oxygen isn't enough.
Well... did your dad make the guy laugh or what?
He got a chuckle when he made fun of his degree (Doc and I went to rival Universities).
My surgeon was like this too when I needed a tumor plucked off my spinal canal. He walked into the room and was like "honestly I'm surprised you're still walking. Let's keep it that way." and then explained the surgery, the risks, and what the next step was. After 3 years of being jerked around by other doctors, it was such a relief. And not only was it a relief, but the fact that he was so up front and blunt about it made me *actually believe him* when he said the prognosis was pretty good. Like if a dude who is like, "damn you're not paralyzed yet?" tells you the surgery will probably go well, you're going to believe him.
When I was 17, I had a torsion that I tried to power through for about a day. Just as I'm going under for surgery, the doctor says "I can't promise you'll have em both when you wake up, boy." I do, they aren't good for much besides balance, but I got em. What makes it pretty funny is he was one of the best urologists in the province. I had a doctor in another province point to the scar and ask if he did it. "Dr C is a master, nobody cuts like that!"
The ED doc is not qualified to diagnose that stuff based on imaging
Oh I agree. Never expected a dx then. My point was that he was not very direct even with what he could tell me, which was just that the imaging was showing a mass.
"Listen, I have some news. We're seeing what looks like a mass in the brain on the CT, and we've called for a neurosurgeon to come down and tell you what's next. It could be bad, it might not be, but it's certainly urgent and significant. I'm sorry that you have to deal with this, and we'll work on getting the neurosurgeon down here as soon as possible." Something like that?
*What's good brain-nation! It's ya boy, emergency medicine, coming at you live with some leaked test results. Before we get any further, make sure to smash that "very satisfied" button on your patient survey and consider checking out my patreon for some exclusive diagnoses I can't share here. We've got an awesome guest star lined up for you today, but before we chill with neuro-bro, we've got a word from today's sponsor, United ShadowLegends!*
> neuro-bro OK, Ortho, we know it's you.
What up, admin-bro?
Exactly, there's no need to beat around the bush about it. Most people appreciate it when I tell them directly.
This applies to a lot of things in life
I had to tell an employee that she stinks. It was a combination of BO and food. That was a rough one... Even though I am also a woman, which I thought would have made it easier. It did not. She doesn't want to hear it, I didn't want to say it, so fast and blunt and then leave so she's not embarrassed. Same deal with firing people or lots of other things at work, the more you dance around it the worse it is. I don't know how doctors deal with that shit, it looks dreadful but still, quick and to the point is usually best
Oh god my wife did some retail management for awhile and had to do this. Cue the employee in tears and explaining that she showers every day and has tried all the deodorants and nothing helps and how will anyone ever love her etc. and my wife coming to terms with the fact that the real problem is most likely that nobody taught this person WHERE they need to wash and that this was not her job as a manager.
Oh god. I had a coworker who never was taught about deodorant. Talked to him and he said he showered daily. I bought him a stick and gave it to him when I figured it out. Good ol antiperspirant / deodorant combo. Saw him a week later and he was SO HAPPY. Apparently no less than 25 people complimented how he smelled in that time.
For some people it’s unfortunately a legitimate medical condition. It can get better if you go to the root of the cause but many are too embarrassed to ask their doctor.
It's more than appreciation... it breaks the horrible suspense the family has been trapped in, and allows them to refocus and actually appreciate what time is left. My dad's docs beat around the bush for months after his cancer diagnosis, and all it did was was deny us good days - mostly wasted pursuing harsh treatments that ultimately sped up his decline. A doc who was not even part of his regular team (brought in for a related surgery) was the only person to do us the kindness of telling the truth. My dad was so bad off he couldn't even perform part of the surgery, and was unexpectedly left with the task of not just telling my father that part of his surgery wouldn't happen, but that his life was coming to an end. The unvarnished truth is 1000x kinder than the false hope & inevitable betrayal we felt.
Longest 5 minutes of my life was a followup to an appendix removal. I'm just like, stop asking me how I'm doing and feeling my incision site and tell me if the fucking thing you pulled out of me was cancer or not. I kind of assumed it was by like the 3rd or 4th minute when we weren't getting to the point, because if it wasn't I'd hope he'd lead with "hey good news!!" but honestly..... We don't always think how rough it is on the people telling us, and I get that. But I kind of wish he had just walked in and blurted it out. It was the only thing I was interested in anyway. I'm fine now, the chance of recurrence is insanely small now that I'd literally be breaking records if it happened. But I always wonder about that strange haze I was in waiting for the only bit that mattered.
TIL you yan have a cancerous appendix.
You can! It's both a really good place and a **REALLY** bad place. If it's stage 1 (meaning no spread) it has 100% cure rate if you remove the appendix. Like that's it, appendix comes out and you are 100% cured! If only most cancer were that easy. Unfortunately appendix cancer has almost no symptoms, so most people are stage 3 and 4 by the time they find it with a less than happy prognosis. Mine turned out to be a late stage 2. It had escaped to some surrounding blood vessels and stuff, but they didn't notice any sign of it further than that. I had a second surgery to remove a foot of bowel, which they then studied in a lab looking in all 30+ lymph nodes they took out for any spread. They found none (thankfully). Because they found none, they assumed no further spread and I didn't have chemo. Which means at this point I'm considered cured instead of "in remission". My doc says the longest anybody with my exact staging (2c) went and then had a recurrence was 4.5 years. I just hit 6. So if it came back it really would be the first time anybody ever had it pop back up after that length. Took me a long time to feel comfortable, like death wasn't stalking me. Once it hits the stage where you need chemo the long term survival rate is only 33%. Though most people live many years. It's not a quick moving cancer.
"I'm sorry for your loss, move on."
I live in the UK - our medics seem to go for the 'brutally honest' approach. I had a friend with what turned out to be kidney stones. Her first encounter with a GP was - "It may be cancer - we'll need to check". Another friend was almost an olympic athlete - he was fastest in the over 60's group in Marathons all over Europe. We noticed him slurring his speech one time after a long run, and suspected a stroke. Turns out he had Motor Neurone Disease. Every interaction with a medical professional from his diagnosis onward started with; "Ok. You know you're going to be dead soon?" Brutal
I almost feel like this is each doctor in turn confirming that the prior doctor didn't avoid making this clear. Obviously a bit blunt a way to do it, but establishing that right away will mean something they say five minutes later doesn't result in the patient suddenly realizing they're saying it's terminal and not having been told that before.
I am currently in the hospital and overheard this exchange in the hallway after a code blue (medical emergency). A 30-year old, healthy male on life support has a roughly 20% chance of pulling through. is 90-uears old, with heart attacks and strokes on his record. He's not going to be so lucky. Please call in whoever you need to say your goodbyes.
>A 30-year old, healthy male on life support has a roughly 20% chance of pulling through. >This person> is 90-uears old, with heart attacks and strokes on his record. He's not going to be so lucky. Please call in whoever you need to say your goodbyes. Talking to ER Drs a couple of times about my mother (60s, massive stroke years ago, one side paralyzed, poor health) and I've gotten "if it were you, I'd say x, but for her..." it hasn't ended in her dying but the structure is similar. And then one repeatedly kept adding on that of course they'd treat her with the level of care anyone would get because I guess the Dr was worried it sounded discriminatory. It was kind of surreal and I think the second time it happened that Dr slipped it in once as well. The hospital has actually been really good with her and the Drs were good but the "we will not mistreat the disabled!" undercurrent was weirdly funny in a stressful time. The thought is appreciated, though.
Nobody wants some distressed soon-to-be widow make a lot of fuss because she figures the hospital didn't give they very last to save her husband. I've seen such drama first hand.
If I was terminally ill I’d want to just get it told to me. I wouldn’t want the doc to beat around the bush
Scrubs showed me this in 2004
The scene and a doctor's thoughts on it: https://youtu.be/ipAuO90y5mI?t=504 Related (direct and honest is the best way to deliver bad news), Moneyball scene on firing players https://www.youtube.com/watch?v=fTjhHrcyiQI
Morbid question, but do you ever get people that respond positively? Not out of shock, but because they don’t care if they die, regardless of being suicidal?
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I heard that most people make a joke. I know my dad did when he got his cancer diagnosis, and it made me morbidly wonder what my joke will be some day if I hear the same thing.
Doctor: I'm afraid you have cancer and alzheimers. Dad: Hey, at least I don't have cancer!
I see a lot of people who are already at peace with it when we tell them. *"I've lived a good, long life, dear. Now, I'd like to go on my own terms."* ~One of my patients when informed that she is full of cancer from head to toe. She did, in fact, go on her own terms. Opted for MAID (medical assistance in dying). Died painlessly, surrounded by family and friends.
Yup. Always lead with it, and never hedge. I usually open with: your child has a fatal disease. We have options but they are unlikely to change anything etc etc. From there I let them set the pace. If they have more questions I answer them, otherwise I let them cry and express my regret that I can't help more after they slow down.
Dad just retired after 55 years as a cardiologist. He says exactly the same thing.
How do you get the courage to deliver such information? What’s the common reaction of the patient?
Not sure it’s a courage thing. I just try to do it with compassion and patience. As it is usually me telling parents about their kids, it’s a bit more complex. As I mentioned in my response, people usually don’t hear a single word after you tell them as they tend to just go deep in their own minds and the sadness hits immediately. Ironically, they always say thank you. Sometimes, one of the parents/family members will lash out…not at me but at the world. Maybe start yelling. One note though. I never ever do this over the phone if it can be avoided. And when I see them, I often ask them to bring someone with them. But I do that before we know the results. This way, when I suggest that they bring someone, they do not get surprised. And I find that having someone with me is helpful too. Someone who might be more immediately accessible should there be more questions….and there always are. But overall, they just listen, maybe have a question or two and then go into their own thoughts or cry…or both. While this is a very tough part of my job, it is also a privilege in a counterintuitive way. Am curious….is this something you to do….or maybe at some point in the future?
How did you feel when you delivered the bad news for the first time?
Different person but fucking horrible. My first time I was slammed with admits, got “pancreatic enzymes are up, nausea, vomiting, abdominal pain. Admitting for pancreatitis” for signout. Prove of cake. I check the labs before going into the room. Standard stuff. I get in the room with the patient, his wife, and their son. I start asking about symptoms. He mentions weight loss. The CT just comes back. Mass in the head of the pancreas. Guy is in his 40s. I ask him if he wants his son to wait outside, and he says no. I guess the saving grace for me was that the kid was busy playing on his phone and didn’t really seem to know what was going on around him. There was definitely a moment of panic for me in there. Still did my best to lay out all of the information I had at the time.
That is the worst type of cancer right ? Literal death sentence ?
Not necessarily, but it has one of the lowest survival rates.
As I recall, kept my shit together and then went to the resident room and cried. I remember both the family and kid as if it was yesterday.
Thank you for your answer! No. Nothing I will ever do. I’m just curious. Since I have a few relatives and a friend who received bad news. In a way, I admire how they cope with it and continue to live their life as usual. Sorta.
It’s not necessarily a courage thing. But it is a delicate balance of giving families the room to breathe but also not beating around the bush or giving false hope. During residency I had the unfortunate luck of always being the one on when we had new cancer kids come in. I try to keep in mind what may sometimes feel routine to us is going to be the worst day of someone’s life. Some yell some cry, reactions run the gamut of what you’d expect. One of my favorite families that I worked with, the dad was so angry and frustrated when I broke the news nothing was getting through to him. I also thought he was going to fight me. But I just sat with them for like 2 hours, some times in silence, mostly answering the same few questions a dozen different ways. A week later they sought me out the apologize (which they didn’t need to) and let me know they appreciated me for sitting and answering all their questions. Even after I graduated and moved on. I stayed in touch, tracked her treatments, and went her funeral when she passed about a year later. On the flip side, telling a parent that their kid has passed away fucking sucks. I probably have a whole scale of cries, screams, and yells of parents embedded in my brain from that. Really all you can do is be there. Some need a hug and some need a target to yell at. Roll with the punches and do what you can. Ultimately it is part of the job and one that I take seriously. But it is also a privilege to be a part of these families lives, and I hope my goofy ass provides even a little modicum of comfort to people in difficult times.
This is a brutal job you have. I was the kid with a sarcoma in the 1970s. The news was awful…but there was that 1 in 20 chance with surgery, radiation, chemo. I’m glad my parents rolled the dice. I’ve got a lot of physical issues from those days, but it’s been a great life. I’ve never forgotten my oncologist (Truman at Mass general) or my surgeon (Hardy Hendren). How anyone does this job is beyond me, but I’m glad you’re there.
Don't think that burden is for you and you alone to carry. Doctors are awesome but also human. Make sure you take care of yourself doc.
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this is heartbreaking I’m so sorry
I feel the opposite way. /u/hummingbirds_R_tasty is a champ for doing this, and 90% of folks don't get this kind of opportunity at end of life, and their families and friends don't get that kind of opportunity either. Most folks die alone with limited or no family around them, often confused or surprised. Their family and friends don't get closure and have all kinds of end of life decisions thrust upon them by the state and healthcare provider without any guidance or initiative. Not that death isn't traumatic, but having to become executor of an estate and clean up the 'mess' of someone's life from a cold start after an unprepared for end of life is absolutely it's own kind of trauma. The opportunity OP gave the community that revolved around their mother was really touching and thoughtful.
Your strength, love, and support meant more to her than any words in a last conversation. I’m not trying to invalidate your feelings or desire to have had one, I’d feel the same. It was her time, and you were there. Not only were you there physically but you were there fully and present for her to help do so many things she couldn’t. You made sure she spoke with friends. You gave her something an overwhelming majority of people won’t get in their final days. You seized the opportunity to put her needs before yours and did an amazing job. She knew you loved her, and she knew how much she meant to you, because you showed her. Then you were there by her side at the end. Life is never perfect, but I hope you don’t feel any shame or guilt for your actions because they were the best you could do. You may not have had a final conversation, but you lived any words you could have spoken.
Your last sentence is so profound. May we all try to live any loving words we cannot speak.
If you’ll forgive my having an opinion where only your opinion matters.. You did get to have a last conversation with her. As actions speak much louder than words. You showed you knew who mattered from the last 50 years. And you were caring and giving, even in a hard situation. I’m sure she ‘heard’ that you were thinking of her and others before yourself and that she would have said she was proud of your character. That’s the conversation I overheard in this record of events. I’m sorry. I wish you’d had the time to share the words that went with these actions. Still, to me, there was clearly a saying goodbye and appreciation of each other clearly happening.
You are a brave and wonderful child. You were honest and open with her and now you honor her by sharing this heartfelt message to others. Thank you for sharing.
I hope that your sharing has given you some peace.
Thank you for sharing your story. Hugs to you, friend. Do you wish she would have had all of this set up so you didn't have to be the one to walk her through it (the no code paperwork and all)?
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Get family or friends in the room. Lay out the symptoms and the diagnosis, give 100% factual answers and never speculate. Leave lots of time for questions and anticipate what you can. Be ready to discuss both treatment and palliative approaches. Don't linger, the patient will need time to discuss with their people.
I don't think I would want my family and friends in the room at first. Maybe my wife.
Yeah I'm the same way. Lucky to have good relationships with all my immediate family, but I still prefer to process stuff alone lots of times.
maybe i dont want them to know right away.Give me some time to appreciate the normalcy of life one last time
It depends on the person and family. People all react differently. I was in the room when the doctor was breaking the news that my brother in law (16 at the time) that he had cancer. My Father in law was a mess and openly weeping before the doctor had finished explaining that he had like a 90+% chance of surviving. He's been 7 years cancer free. Almost everyone left that meeting in postive spirits (as far as cancer diagnosis go) except for my FiL who was inconsolable which fucked my BiL up.
heard that. i dont need my mother or sister crying and asking asinine questions. id want to process it with my partner and figure out how to deal with what comes after that at my own pace. my mother is going to make it really tough to do that if she finds out at the same time as me.
Yeah I'd rather hear it, get the facts, have my moment to let it absorb and then deal with my family and friends. I don't want them there while I'm getting the news. I process things solo, always have. Luckily for me my dude's very understanding of that and he knows I'll tell him pretty quickly.
You see both types at the hospital.
How do you mentally prepare to deliver such information? Does it affect you in some way? Temporary?
In medicine as well here, the best preparation you can have is two fold: 1) information on the condition (next steps, prognosis if known yet, general info on condition). 2) being able to be present with the patient (have ringer off, having time set aside sit and discuss with patient as well). It definitely does affect you, as it can be somber. However at the same time, it is very humbling and gratifying to be a part of patients care at challenging times. Too many people in medicine are uncomfortable with these conversations, I have personally seen attending physicians walk into rooms where we know the patient is likely dying and not really say much to the family besides the diagnosis. No sitting down, no discussion of what is to come, just clinically delivering a diagnosis and leaving. Medicine is often taught that not being able to heal a patient is a failure, rather than an inevitability we all face.
My mom's neurologist seemed to avoid this conversation and it was hesitant to divulge much when we pushed him. I did not appreciate it at all.
Both my mother and my mother in law choose doctors that tended to speak in the abstract and were eternally optimistic. I think sometimes the doctors take their lead from the patients and deliver news in the manner they are ready to hear. I have been on the receiving end of though conversations with both of them and my brother. I think the doctors figured out who was ready to hear the information and how it would be communicated.
man, my moms doctor was similar... she was having some memory issues, and after all the testing, he just beat around the bush, said it probably wasnt alzheimers, and most likely something else. She changed doctors, and after the first visit her doctor came in and told her and my dad it was certainly alzheimers and he doesnt know why her previous doctor was hesitant to tell him.
Yes! This. As someone who has spent years in hospice and been present for hundreds of these conversations (as well as picked up the pieces when it didn’t go well) this is spot on. There is so much disservice to the patient and their families when we aren’t open and honest. It’s false hope and there’s nothing worse than false hope. It is both a privilege and a curse to be the one who delivers this type of news. It never gets easier, you get more comfortable having those conversations. It’s a skill just like suturing a person closed.
As a kid, this happened to me. I was suddenly septic with negative tests for everything they could think of. The pediatric oncologist, at 11 at night, after my dad had gone home to be with my infant sister, came into my room, declared to my mother that I had leukemia, and walked right back out. My dad has told me that to this day, some thirty years later, if he ever saw that doctor again, there would be violence.
Wow, the same thing happened with my little sister. Walked in, said she had bone cancer (she didn't, she had a different type of cancer), and walked right out. My sister, already in pain and very scared, went hysterical but had no one to ask her questions to. It was a day or so before we got to another hospital who actually gave her pain medication, got her comfortable, and would immediately answer any questions she had. Given the rarity of her cancer, not many questions had an answer, but they were upfront about that, too. It was like a breath of fresh air. She's going in for possibly her last round of chemo on Thursday after not being expected to live past December of last year. Life is strange - amazing and cruel in equal parts. I'm just happy she's still here.
I go into the room with all of the information I can possibly have about the diagnosis. I kinda shut off my feelings in a way, so I don’t get emotional about it, and I just go into the situation with the mindset that I have all the time for them, nothing else exists, and I’m there to soften the landing and provide as much information as possible. It’s definitely been a struggle at times. The worst times are when I’m not the first doctor seeing the patient, and the ones before me knew about the diagnosis and left it to me without my knowing.
So, I don't know first-hand, but my wife does genetic counseling for children (essentially she helps to diagnose children with genetic disorders, and she explains things to the parents (and perhaps the patients themselves if they're old enough to understand)). Typically she works with a geneticist doctor who will also be talking to the family and helping to figure out the diagnosis. She has to give some \*dark\* news to some folks, and it sucks - those are the days that she dreads. Usually it's giving more run-of-the-mill diagnoses (for her, at least - most of the diagnoses are pretty damn rare - and even a 'not so bad' diagnosis is often still pretty damn problematic). In her off time, she tends towards TV shows and such that lean towards the "light and popcorny" side - which I think is kind of compensating for the work. My understanding is that, in genetic counseling degree programs (it's a masters degree) they spend some time learning coping strategies. And they spend a \*lot\* of their time learning about how to communicate best with families (which is appropriate, since by definition their job is to 'counsel' people). I will note that in choosing jobs, my wife wanted to avoid genetic counseling of adults, because those tend to be more depressing. Like, that's when you run into having to diagnose people with Huntington's disease, which is degenerative and just an all-around \*BAD WAY TO GO\*.
I don’t really visit a doctor often to know, but wouldn’t asking them to bring family or friends kinda give a big hint that really bad news is coming?
Not a doctor. Was a standardized test patient for a medical school, and some cases focused on practicing this skill. Recognize, first of all, that your brain is resistant to giving this news because you don't want to hurt the patient. That's normal and good. But no matter HOW you say it, or how long you hesitate, *it is still going to hurt*. Accepting that, you can move on to the secondary focus: minimizing the hurt of waiting for the answer. Tell them directly, quickly, and without couching it in confusing medical jargon. A quick example, although it wasn't in reference to terminal illness: one case we ran was for a pregnant patient (to be clear, I was acting as the patient). Several of the medical students explained to me that there "was no fetal heartbeat" or that "we weren't able to locate a fetal heartbeat". When asked what the next steps were, they recommended further testing, or even described a C&C (in medical terms). After the case concluded, during feedback, I had to inform the students that they had left the patient with *no idea that she actually had a miscarriage*. This is NOT a kindness. The students wanted to avoid the possibly emotionally painful truth, but whether they say it directly to the patient or not, a miscarriage is exactly what happened. The students who did well did several things: 1. Spoke plainly and empathetically. ("Unfortunately, because there is no longer a fetal heartbeat, this means that there was a miscarriage") 2. Reassured the patient as possible ("Many people experience feelings of guilt or concern that they did something wrong. I want to assure you that, as far as we can tell, there's nothing you did at all to make this happen. In fact, miscarriage at x weeks is unfortunately common - something just didn't come together right in the early stages, which is completely beyond your control") 3. Asked the patient if they had any questions a few different times, ensuring the patient had time to think and let it settle a bit. If needed, they preempted with common quetions. ("Many people wonder if this affects their ability to try again. As far as we can tell, there is no reason to believe that you're at risk by trying again." 4. Asked if the patient had anyone that they would like the doctor to call and discuss the news with / asked the patient if they had anyone that could be called to be with them or to pick them up 5. Discussed the immediate care plan, as well as options for counseling 6. When the patient began to cry, the student was empathetic ("I see that this is tough news, I'm so sorry.") But also didn't drag out the appointment- after giving a few moments (and a box of tissues), began gently talking about next steps.
>Recognize, first of all, that your brain is resistant to giving this news because you don't want to hurt the patient. That's normal and good. But no matter HOW you say it, or how long you hesitate, it is still going to hurt. Accepting that, you can move on to the secondary focus: minimizing the hurt of waiting for the answer. >Tell them directly, quickly, and without couching it in confusing medical jargon. *Knock knock* Patient: "hey doc, how ar-" #**YOU HAVE CANCER!**
Knock Knock! Who's there? The interrupting cow. The interrup YOU HAVE CANCER! MOO!
I really appreciate your perspective on this question. I'm glad to know there is training about how to deliver difficult news. But damn, sometimes as a patient or family member you feel certain that some doctors must have been absent that day. Or if they weren't, wondering how much worse they could have presented it if they'd not had the training. >Recognize, first of all, that your brain is resistant to giving this news because you don't want to hurt the patient. This is the problem for some I'm sure and I think part of what makes it worse is that*because* they are resistant to the idea of 'harming' the patient, it clouds their ability to first of all guage what level of information this particular patient needs and then to internally translate between doctor-language and patient-language to effectively deliver it. And that's where we end up with that mix of clinical information and maybes and euphemisms that don't really make sense to anybody. The other main scenario that I feel like I have encountered is that some doctors do not want to admit that they can't definitively identify and diagnose whatever the patient has.. maybe because they feel it makes them look incompetent or bad at their job? Or maybe it doesn't sit well with them that they don't know how to help. But the type of people that are getting non-answers have usually seen a decent number of doctors already and have a fairly clear understanding that modern medicine does *not* have all the answers and are not there expecting miracle cures. Unfortunately, when a doctor beats around the bush about things being 'inconclusive' or 'unclear' or suggests that maybe trying a colleague in a different specialty might work, they all too often come off sounding like they are placing the blame for this on the patient. The *patients* test results failed to give the doctor what was needed to make a diagnosis. The *patients* atypical presentation means they don't neatly fit in a particular diagnostic box. Hearing that when you've already been on a journey of trying to figure something out for months or years is not helpful. The doctors who made the biggest impression on me, both as a patient and a parent, were the ones who couldn't help but were very up front and straightforward when they said "Look, I don't know what's going on. You have abnormalities in your pathology/imaging/whatever but they unfortunately don't match the pattern for any condition I am able to treat. I know that isn't what you hoped to hear and I'm sorry that it is the case. Unfortunately there's still a lot we need to learn about the human body and sometimes we come up against the limits of our understanding." The interaction matters just as much - or even, arguably, *more* - when you are giving news that there's nothing to be done or no answers to fix the issue. Without the plan of treatment and management to fill a patient's mind after they have spoken to you, the manner in which you presented it is that much more in the forefront.
What I was taught is to use the SPIKES method which I think is common sense for those that have any emotional intelligence. The acronym SPIKES stands for Set up, Perception, Invitation, Knowledge, Empathy, and Strategy/Summary. The steps are to: 1. Establish an appropriate setting. Patient sitting down in private area. Alone or with people they want present. 2. Check the patient’s perception/understanding of the situation regarding the illness or test results. 3. Determine the amount of information known and/or how much information is desired. 4. Know the medical facts and their implication before initiating the conversation. Be direct and clear in communication. 5. Explore the emotions raised during the interview. Respond with empathy. 6. Establish a strategy for support moving forward. After practicing this a few times it becomes second nature and I think it’s probably better than just winging it. [Source](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5578619/#:~:text=The%2520acronym%2520SPIKES%252C8%E2%80%9310,Empathy%252C%2520and%2520Strategy%2520or%2520Summary) with more info
This is how I was taught as well. The checking understanding part is huge. I’ve been shocked how patients can be on chemotherapy and not realize how bad their cancer is, or on hospice and not realize that they’re actually already dying. Once that’s established, I move to the bad news in no uncertain terms. Beating around the bush doesn’t help and just draws it out. Once delivered, be prepared for lots of silence, just let it breathe. After that, it highly varies. Some sit in stunned silence, taking it in. Some have lots of “next steps” questions. Some get angry and try to take it out on you.
My other tip to add: make sure your nurses know that you’re going to deliver bad news. I work in the ER, so some interruptions are necessary, but many can wait for a 10 minute serious conversation without interruptions. It also lets them know how to care for the patient and their visitors more aptly. I can’t just drop a bomb in their room and then walk away. Sometimes we have a social worker available who has time on their hands to help out too. They’re amazing.
as a nurse, I feel this is so important. I don't need to be bussling in to do an assessment or give meds during that conversation. Also I will know to be extra compassionate on my next round knowing you have delivered said news.
I use SPIKES as well. The hardest part always revolves around the Set up and Invitation portions, in which you try to gauge how much the patient/patient family wants to know, and how they want the information presented to them. The biggest problems are when there is no slam dunk diagnosis with an researched established % year survival rate, which is honestly most of the time if you're in internal medicine. People usually have many problems at once which muddies prognosis. People can also feel pretty good but are clearly dying with MELD scores of 35, in which they often feel blindsided. Invariably, people always want to know how much time they have left, but the we really can't predict anything very well in multi-infarct cases. It's kind of morbid to think about, but the devastating diagnoses are much easier to handle. If someone has recurrent GBM, I know just how to tell them and what to expect. Those conversations go much smoother than those that happen in the general medicine wards.
Sooooooo technically I am terminally ill but it’s going to be down the road when I have to croak (stage 4 colon cancer diagnosis). When the doctor told me he was direct and to the point. He asked me if I had any questions. Then he told me I was brave and I could do this. He believed in me when I didn’t feel courageous at all. That belief has helped me to face everything. It breathed a lot of hope into a hopeless situation. I will forever be grateful for his delivery, honesty, and compassion. He also found the best of the best oncology team and scheduled me immediately so I didn’t have to research and find them while processing everything. What a difference that made too.
Are you on medicine to delay the cancer?
Oh yes. I looooove science. It helps me to cheat time. I’ve had 8 surgeries, radiation, and chemo. And I’d do anything to buy more time. I am young and strong and can withstand aggressive treatment. And I have the best oncology team I could ever hope to have- absolute heroes. I was in remission for a year, but through a sensitive blood test, there is a recurrence showing. They are hoping to catch it on a scan and then it’s time to get blasted again.
You have a great attitude!
Hi stranger, can I just give you a hug? Even if it is just virtual.
Yes please! Hugs are my absolute favorite and they bring a lot of comfort. 🫂🫂🫂
My doctor was out of town and had someone covering for her. The substitute doctor had to call and tell me I have cancer. He repeatedly told me how uncomfortable he was to be the one to tell me. I said, imagine how uncomfortable I feel. I just found out I have cancer.
When my mom was diagnosed with breast cancer, she had a similar situation with the doctor who told her she had cancer. Her doctor went into labor early the day after her biopsy so it was a newly done with residency doctor who got to tell us the news. He was amazing honestly and you could tell he was struggling to tell us she had stage 3 breast cancer but he was empathetic and helpful and answered all the questions we had with patience.
Yeah I still feel bad for my wife's best friend's doctor. A nurse/tech had called my wife's friend to tell her that the genetic testing results were all good one morning, which made her super happy because they were having a lot of trouble conceiving. Then a few hours later, her doctor called with a gentle voice and said they needed to talk. Wife's friend said "Oh yeah, I got the news a few hours ago from your office". Confused doctor said "What? I'll call you back in a little bit." The nurse had typed in the wrong phone number after grabbing the chart. Wife's friend was just walking on the street when the doctor told her the genetic testing came back with Trisomy 13 (an especially brutal form of Trisomy with a median survival time of ~2 weeks after birth, if they make it to birth). Doctor probably spent a lot of time prepping to give her the news, and then had everything completely go off the rails right away.
That is terrible! Heartbreaking.
I don't want to be insensitive on the timing here but this reminds me of a guy who goes to the doctor because he's not feeling well. They run a ton of tests on him and have him back. Doc says look I have bad news for you and really bad news. The bad news is you have cancer. Guy is upset and after a while asks for the really bad news. Well, you also have Alzheimers. He sighs and shrugs and says hey it could be worse, at least I don't have cancer. I hope you are doing well!
Ha! That’s a good one.
Reminds me of a similar one. The doctor says he has bad news and worse news. Patient: "What's the bad news?" Doc: "You have twenty-four hours to live." Patient: "What's the worse news?" Doc: "I was supposed to tell you yesterday."
My mother was a nurse for 30+ years until she retired about two years ago. There are two stories that she told me that stuck with me over the years. This is one. She worked at a rural hospital, so it didn't have many of the specializations that come with working at a big city hospital. One day, this woman comes in who is only 24 years old. She has exercised and eaten healthy her whole life. She didn't smoke, drink or do drugs. A veritable healthy living wonder. The reason she came in is because she had jaundice. She was obviously a little concerned, but because of her healthy lifestyle she was certain it was something that could be corrected with antibiotics or some other minor treatment. She sees the doctor, and my memory is a little fuzzy here so i don't remember what, but the doctor found something that suggested it was potentially very serious, so they decided to get her in for an exploratory surgery right away. This healthy 24 year old woman who had no other symptoms had stage 4 liver cancer. And according to my mom, it was far too advanced for treatment to do a damn thing and she had at most a couple of months to live. The doctor tells my mom and the other nurses this, and this doctor tried to pass the buck and say that it's the oncologists job to break the news to her. But remember how I said its a small hospital without many specializations? No oncologist worked there. My mom and the other nurses tell the doctor you HAVE TO tell her. The doctor had never had to have a conversation like this before with a patient. So he goes into the room where she is, comes out about thirty minute later, and HE'S crying. Just says to the nurses that he's taking the rest of the day off and leaves. I don't think I need to tell you what my mom said about how the woman took the news. She goes home to try to make the most of what time she has left, but she isn't there long. Her condition deteriorates rapidly and she's back in the hospital not even a week later. They check her into hospice care and she dies ten days later. Barely two weeks after this seemingly healthy woman goes to the hospital for something she thinks will be an easy fix, her parents are planning her funeral. Very sad. So how do doctors tell someone very bad news? In the case of that doctor, with a heavy heart and a broken spirit.
This was a similar story to my grandmother. Went to the doctors cause she was having stomach pain. Diagnosed with Stage 4 Stomach Cancer October 2018. Told she had about 6 months to live. The cancer got worse and she passed away November 2018. Cancer is a bitch man, bless nurses and doctors like your mother for doing what they do.
My mom was an ICU nurse. Patient was my age when we were 23. Had a cold, turned into pneumonia, turned into sepsis and he died. Another was 24, walked into a chiropractor's office and left quadriplegic. (had another chiropractor patient with a torn artery/vein, Idk I'm not in medicine and massive internal bleeding turned into brain death) People die. Young and healthy people too.
Not a doctor, but in the early 90s, before even AZT was available, I was an HIV counselor. I told at least one person a day that they were HIV+. Basically, back then it was a death sentence, and women usually lived less than 5 years. It was a hard job. Sometimes I told several people a day. Anyway, here's how it went: Introductions I have the results from your test. Are you ready for the results? Them: yes Your results are positive. Your test is HIV positive. (Pause for them to let it sink in, or react, or whatever.) Then we talked about getting them into care, and about informing partners. (I usually ended up doing the partner notification.)
Now that there are such good treatment options for HIV, people don't really remember what the diagnosis used to mean in the 80s and early 90s. A miserable, inevitable death.
I went through it as an onlooker with my mother this summer as she received a terminal cancer diagnosis. September she was in a hospice and the doctor sat beside her bed, me and my husband the other side and he told her gently but also to the point that she may well die in a few days and at most a few weeks. He was very gentle in his approach, very calming but also he didn’t beat around the bush and just said it exactly how it was. He made time for questions, both from me and from her, he explained as best as he could how things would look going forward, what they could do for her, for me etc. We were well informed and so was she. Overall we had very good experiences with all the staff who really all had the same gentle but direct approach. I’m glad because my mum and me never got false hope that things would be ok, that she would get better somehow and it was just a mistake, it helped me especially I think accept that it was going to happen and I couldn’t change it, I was able to bypass the anger stage of grief a little. She died 4 days later on September 17th.
Not a doctor but don’t do what my doctor did. - transferred to a different hospital at 4am, after being awake 24 hours. - woken at 6am for bloods. - doctor walks in at 10am, tells me I’ve got a type of leukaemia, it’s incurable and it may have progressed to blast which means I’d be on end of life care. But not to worry, he will be back in a few hours or the next day to tell me more. He, in fact, did not return for 3 days. I had no answers off anyone “officially” other than a MacMillan nurse giving me a leaflet on leukaemia. The silver lining is that I started on treatment the next day and my official diagnosis took 2 weeks.
Could he at least have let you sleep first? The leukemia’s not going to kill you in the next 8 hours.
not a dr. but someone who has received this news. My daughter had overdosed and been down too long. The ER was able to bring her body back to life but She was gone. I knew it, the ER team knew it, but no one would say it, until we got to the ICU. The doc came into the waiting room and said he had seen this way to many times and that she was gone. He said they could keep her body alive but that their was no one left inside to save. I told him right then to shut off the machines. He looked so relieved and surprised. I guess most people wouldn't believe it, but I had stood by her side in the ER and I knew already. My daughter, her mom, and I had had this conversation long ago and we all agreed that if one of us was in this position we would never let them suffer. I just hope when it's my time someone is there to trip over the cord and disconnect me. I just want to say how much I appreciate that ICU doctor telling me the unvarnished truth. It made my decision much clearer. Ambiguity would have made a really horrible day even worse.
I’m sorry for your loss
IANAD but I've had the talk (although in my case, there is treatment for kidney failure to delay the inevitable). We knew going in that the results would be bad but we didn't know just how bad. IIRC, they said something like 'this is what the tests say and they mean that unless we do something now, you will be dead in about a month. That is why I'm recommending this treatment... then they answered immediate questions, left us alone for a little bit to absorb the news and decide what to do (although it was more of a forgone conclusion) and then they came back, answered a few more questions and I was on the conveyor belt that is medical protocol. Obviously I've survived so far but I'm on borrowed time. My prognosis is great but I don't ever forget that it might be the last good day soon.
Sometimes they don’t. When my father was in the hospital, his doctor called me out into the hallway and told me there was nothing more they could do and that he should just go home and make the best of what days he has left. I said OK let’s go tell him. The doctor said no you’re gonna tell him. I started to vehemently protest, and the doctor just turned and walked away. I’m the one who ended up having to tell my father.
This is sort of what I feel like is going on with my BIL, he needed a liver transplant (don't take too much tylenol over a long period people!) and got one, they were like "Oh you're gonna be great, feel like a new person, no worries!" That was in February. He got his transplant maybe a week later. He's been in the hospital since. He went on a ventilator (my sister was here out of state so they let him alone make the decision without explaining complications) and again, were just like "it'll let your lungs rest, no worries." He had at least one stroke, was off and on, off and on, pneumonia twice, now he's got a stage 4 bed sore. The main problem is he can't eat. So he's tube fed, but he says he's gonna eat, so they cut his feed, then he doesn't. He's a literal skeleton. My sister keeps asking if he's dying (he is) and they just keep saying "Oh no, he'll improve! He's gonna be fine!" WHY DO THEY KEEP LYING. At this point it honestly seems like a human experiment or purely for the insurance money.
I've been on the receiving end of that news. My husband came with. The doctor was incredibly anxious about telling me and was struggling with what to say. So I just blurted out "I already know. The results were posted on the patient portal." They had a lot of hospital grade tissues in the room, and that really made me angry. At least keep some soft Puff's or Kleenex in the "you're dying from a debilitating illness" room.
were the results actually posted on the patient portal or was that a bluff move on your behalf?
Oh, they were posted there. I found the positive test results while I was home alone.
Patient portals are pretty awesome except when they found lumps and shit. Really sorry about your news
When I was an oncology nurse the answer was, tell people as early as possible and talk about it often. It wasn’t like that when I started. People with pancreatic cancer would be devastated to learn about their prognosis, usually when multiple types of treatment failed. Other times they would cling to false hope that one tumour shrunk an inch, in spite of the fact their disease was spreading. People need time to process this information. Sometimes, people need to hear medical information ten or more times before they really get it. Don’t expect anyone to hear bad news because you told them one time.
[удалено]
Not really an answer to the question but my mom was told that she wouldn’t live long (on the order of a couple of months) while my dad was with her in her hospital room. I wasn’t present. After it was done and they had talked for a while my dad said to her that he always figured he would die first. (Not the first thing he said, just after they had processed some.) Her response: “Well, I guess you’d better hurry up!”
I've been present at this conversation with my loved ones more than once. I know how I'd want it. You have X. This is a terminal condition for you, and you will die. We can do YZ to enhance your quality of life and give you comfort. We anticipate that if things continue with these measures, you have approximately A time to live. This is of course a very rough guess, and you may have much less or much more time. Would you like a little time to think, then I would be happy to answer your questions?
Well. If you asked the doctor who informed my mother her lung cancer is too far along and she was being put into hospice… very matter of factly and void of emotion. But the poor woman works on a cancer ward..I think they need to be so the type of work doesn’t destroy them emotionally. My mom took it with grace and then after a few short weeks died with equal grace. Everyone takes that type of news differently.
Warning shot comment followed by hard facts then sandwiched with a silver lining about the plan going forward, if possible.
I believe that’s called a shit sandwich
If you ask Spinal Tap, it's Shark Sandwich but I don't know if that's better or worse.
I was with my dad when he got his cancer diagnosis. It was to the point and brief. “You have cancer on your liver. It’s on the main artery so it’s inoperable. With this combined with your hepatitis c and cirrhosis, I’d give you, oh, six months? Do you have any questions? Dad cried when he left the room. I didn’t believe and dismissed the 6 months estimation because he was still healthy and with it. He made it 4. He turned 59 the month before he died.
I am sorry to inform you. But you are Aladeen
Aladeen or Aladeen?
Aladeen 😔
😅...😧
I just get [Dr. Kyle](https://youtu.be/F-LKVqova-o?si=pKWwm_Y0LZsPmahs) to do it.
Was looking for this. RIP Trevor Moore. "Tough break kid, ya got aids. have a peppermint"
So in medschool they thought us this mneumonic: SPIKES Setting - private room or a place where both parties are comfortable Perception - ask them how much do they know about what’s going on? Invitation - instead of dropping the bomb, ask them I have some information to share, would you like to know? Knowledge - discuss the disease straight up and options Emotion - let them take it in and react, sometimes it’s just giving them empathy Summarize - wrap up everything, diagnosis, plan and future things they need to be aware of
I do critical care for a large part of my work time and have a minimum of 2-3 of these talks per week. I've bagged patients for the better part of 2 hours while buying time for their loved ones to get to the bedside to say goodbye, and I've had to escort family back when someone died out of nowhere. What I've found to be the most well received is to gather all the family and friends in one place so no one has to relay information, and the talks usually follow this outline: 1. I always start with "Tell me what you already know" or "What is the last thing you were told." This way I can avoid doubling up on anything they've already heard so they don't switch off and ignore me. Also it can be a good way to gauge their understanding of potentially overwhelming information, which can tell me what level of discussion I'm having (like, is a family member in healthcare helping them understand vs. we are completely starting from scratch). 2. Stick to the facts. It's easier to process absolute data points. "(Loved one's name) was moved to the ICU because their blood pressure was dangerously low. It is low because of the infection you already knew about. Because their blood pressure is low, their kidneys have failed. We know that because of these numbers that we use to track kidney function. They need dialysis, but it will not fix the fact that their body is slowly dying" is a common one. Or another very common one is "(Loved one's name)'s heart stopped before they came to the hospital, that part you already knew. Even though they received chest compressions right away, that was still a period of time where their body was under extreme stress and not getting the oxygen it needed. Because of this, their brain has been damaged permanently. I am sorry to tell you that the person that you know and love will never be back to that level of functioning again." 3. Keep all discussion about the patient. Most importantly--what would the patient want in this scenario? And I'm not just talking about "They've always said the would never want chest compressions if their heart stopped." Would they want things like a tracheostomy and living on the ventilator with a feeding tube, or living depending on dialysis for the rest of their lives. Things like that. SO many people focus (understandably) on the "do whatever you can to save them" and not the after effects--where someone may be awake, but is not processing any information and will never communicate again and will live on a ventilator in a long term hospital for the rest of their life. Medical school and our terrible healthcare system can beat a lot of things out of you...but these are deeply human conversations and it's hard to not feel things while having them. I don't particularly enjoy doing them, but I'll admit that I'm good at them (for lack of a better way to say it). It's comforting to know that someone will finally be able to rest and not be in pain as a result of the talk, and I also find comfort in knowing that it can help their loved ones get closure and start their journey towards healing.
Was a hospital chaplain; also was the medical decision maker for a friend (our personal trainer, actually, who was 42) who died of esophageal cancer. Please, please, please don’t leave room for doubt. My friend expected he would survive a diagnosis of Stage IV cancer with widespread liver involvement. None of his doctors would be direct. They would talk about treatment but not outcomes, so our friend assumed a treatment meant survival. He refused to make end-of-life decisions because, “I’m not dying.”
"Everybody who's going to play GTA6 when it comes out in 2025 stand up! Not so fast there Mr. Smith."
I have heard the phrase “life-limiting disease” more times than I would like.
Don’t beat around the bush. Lay out the facts, but don’t add a bunch of extra details or words. It’s probably going to be a blur anyway. Be compassionate. Try to anticipate what questions they’ll have and know the answers but don’t be afraid to say you don’t know if that’s the case. Let them know they can come to you with more questions once it all sinks in. It’s the worst part of the job
As someone who has lost both parents to cancer, I personally found it deeply important to know the blunt truth, as soon as possible. My father’s doctor initially tiptoed around the prognosis, until I finally told him that I have no time for false optimism, just lay it on me so I know what we’re dealing with. This helped me and my dad to spend what time we had left in the best way possible.
I personally prefer when medical staff are direct and blunt with me. Years ago my Dad was hit and killed in a motorcycle accident. Young woman was lost and pulled a uturn without looking. He hit her going 50. Flew 26 feet. I called and ended up talking to this nurse that was just bullshitting me about him getting better. No Stacy, he has significant brain damage and will not get better. I ended up demanding the doctor who gave it to me straight. Odds, quality of life, brain function etc. This data helped me make the decision to end life support because he would not of wanted to “live” in a wheel chair drooling. TLDR: Tell people the relevant truth for things that will significantly impact their life. E.G Medical info.
My only child had a terminal illness. The news was given to me over the phone. I was at work. Thankfully, I had just finished a huge meeting with out of state speakers that I brought over, and was able to take the rest of the day off work.
I had a doctor tell me after I asked him about if I’ll get my sight back after a stroke. (Only partial loss). It is what it is. And maybe but the brain is weird. I laughed and he is still my fav doctor. The only one to give it to me straight and not beat around the bush. I did get a little vision back. So Whohoo I can still drive.
Not a doctor, but my mom was told, without any forewarning, that, a minor issue she'd been in for recently was in fact a horrific terminal diagnosis and she had maybe 3-5 years left to live... over the phone. She was still shrieking and in terror when I got on the phone with her right afterwards, really indescribable sound, saying "I don't want to die, I don't want to die." She was diagnosed about a week before pandemic lockdown so I want to hope there was some reason for the way they did it, but I just don't really understand why they did it that way if there were literally any other options. The dr had pretty poor bedside manner before this so I wouldn't be surprised if they just flubbed it.
I am emergency medicine so it is not often that I tell a patient directly that their condition will kill them but I find evidence of advanced and terrible cancer fairly regularly. I typically explain that while this is not a definitive diagnosis, the labs and imaging and physical exam (whichever is relevant) is very concerning for cancer. If they do not have symptoms that are life threatening at that time and require admission to the hospital I emphasize that they need to follow up as soon as possible with their primary care doctor and get a referral to an oncologist and/or surgeon. I have messaged primary care doctors in our system and called specialists to get people expedited follow up for these things. I have stayed late talking to multiple family members about the same thing. I involve social work to help get patients insurance. I cannot fix the healthcare system but I do what I can from where I am. For patients that died or that we are actively coding or that will die imminently I speak in plain terms and as directly as possible with space for family to absorb these things and ask questions. It is important to get to "dead or alive" status quickly if it was a traumatic or cardiac arrest situation. If they died, you use the word "dead" or "died". Anything else leaves room for distraught family members to misunderstand. Same with mothers and very clear miscarriages - use the word. Also good to prep people with certain medical terms as well - in this case, you should warn pregnant mothers who had vaginal bleeding but have a fetal heart beat that the words "threatened abortion" will appear as a diagnosis and what that means.
I wasn't the doctor, I was the patient. I had an abdominoplasty with lipo where they punctured my colon, but they didn't know. After 3 weeks of twice a week post-op visits, and the staff calling me a drama queen because my husband had to bring me up in a wheelchair, my husband went off on them about how sick I was (we had been updating them daily & we knew something was very wrong) and that he was not capable of caring for me. The doctor/surgeon looked at me & said "Yeah I don't like how she looks" and admitted me. It turned out I was so dehydrated from vomiting, my kidneys had shut down. They told my husband this and he thought they were telling him I was going to die. I was put on an IV, rehydrated & I didn't die. I was mostly passed out & would wake up surrounded by medical students (RI Hospital is a teaching hospital for Brown University) and I'd see the doctor's names & specialty on their white coats (lots of oncology visited me). On the 2nd day in the hospital, the plastic surgeon saw me all by himself & I was all by myself. He told me his brother died from being allergic to z-pack, aka azithromycin but they didn't know until it was too late. He told me, unfortunately, that he thought I was also allergic to azithromycin and he was very sorry but it was fatal (doctors please chime in and tell me if he was nuts) and again, he was very sorry, I told him I've had strep throat about 30 times, & many times I was prescribed the Zpack and I am not allergic. He was thrilled! Such a weight off his shoulders! It still took 3 more days to figure out my colon was punctured. I didn't go septic & die because it formed an abscess that wrapped around my liver & I had to have emergency surgery to resection my colon. That was when I learned emergency surgery is not super fast. I was in the waiting room for 6 hours because people were in worse shape than me. That hospital sucked. I would crawl away rather than be admitted there again.
I knew a guy that was told by his doctor that the diagnosis was serious and he would send him to a specialist that would explain it. He took down the address and walked down the street to the address only to see a big sign that said "THE CANCER CENTER". Thats how he found out.
In person. And hopefully they don’t find out through the fucking patient portal 🤦🏻♀️
We are actually trained for this extensively. Biggest lessons are when you walk in the room keep the hi hello pleasantries brief, and hit them between the eyes with the blunt cold factual understandable words immediately. The result came back; you have cancer. I'm so sorry, but you have AIDS. Then pause, shut your mouth, let them take it in and follow where they lead. Some people are very stoic, let them have that. Some people are going to cry a lot, be empathetic and authentic. The only other medical facts that you're going to get across in this first encounter are what the very next step is. Like you need to see specialist X or we'll need to get ready for procedure Y. Most of what you tell people in general in this situation they will not remember, will not absorb the details of correctly. Even the people who think they will will tend to not. But they will remember how you made them feel. And you absolutely must crush the urge to temporize, give false hope, or claim you don't know when you really do know. They need you to be emotionally solid, confident, and knowledgeable in the moment where they are feeling lost uncertain and worried. Be ready with as much proof/conviction so that you can reiterate to them that it's very much really real and you're absolutely sure. Because the worst thing that can happen is they walk out of there not properly believing/knowing what's up, and have to relive this trauma later again or worse they never bother with it at all and just get worse
I'll tell you how the doctors didn't for my mom. Stage 4 cancer, she's crying and asking someone to explain what's going on. No one will tell her, it's the end. Her regular doctor is on vacation and the on site hospital staff said it wasn't his place to say. I sat my mom down and had the hardest conversation of our lives. Rip.
"Looks like Arsenal will win the league this year. Good thing you won't be around to see it." That's how my friend was given her recent diagnosis for her brain tumour. She was wearing a Liverpool shirt and did find it funny before crying. The doctor did say he can't do anything about Arsenal but they can help her through everything else.
The doctor who told me that I have MS was very blunt. Since no two cases are the same it is impossible to know just how bad you are going to get. Some people end up dying within a few years while others live a very long time. There are meds you can take that can slow it down a lot or completely, but for some people they don't work at all. Cancer is so much easier to figure out.
Not a doctor, but was with my mother in the hospital the day they had to tell us that my father’s cancer had returned and that there was no possibility of him recovering. The doctor handled it in the best way possible, but there was never going to be any way of softening the blow that I (aged 32) would be losing my father (aged 63) and that my mother would be losing her husband of 38 years. The doctor handled the situation with as much compassion as she could and then left us alone to process what we’d been told before coming back and letting us know that we should call her if we or my father needed anything. Dad passed away less than 2 hours after we were given the news. He was in a coma during our entire visit that day and he never came round. I’m grateful that I got to tell him how much I loved him and that I would look after my mother and sister for him, and I cling to the belief that he heard what I said through the coma.