Supplemental Digital Content – Table 3: Major physician themes and representative
quotes
Four major physician themes were identified in the study. Themes are listed on the left,
and representative quotes are listed on the right.
Themes
Quotes
Numeric estimates of
prognosis –
physicians prefer
qualitative terms.
"Even if you give them the 80% chance of mortality, if they’re optimistic, they will
latch on to the 20%.”
"I really shy away from giving numbers because families will often hook onto
those numbers and make an absolute judgment. “
"I don’t know how you objectively measure a lot of the subjective things that I
like to assess in trying to guide families and making what ultimately should be
their decision. "
"I rarely give actual numbers. In fact I can’t think of the last time I gave actual
numbers. I talk about the worst possible outcome, the best possible outcome
and the most likely outcome."
"I would say that almost always were communicating to the family that there is
uncertainty and there probably is a range of possible outcomes."
"In my practice now I almost refuse to give them a number. because if you say
there is a 70% bad outcome there is still a 30% who have a good outcome and I
can't tell you which one you'll be in. "
"When I’m talking to families, I often will say nothing that we do is clearly 0%
versus a 100%. Nothing that we do is a 100% black or white and for most
people there’s this pretty wide grey zone and I can only tell you what we know
for the vast majority of people that may or may not be the experience of
whoever we’re talking about."
"I would never give the result of an IMPACT score and tell them that there is a
sixty percent chance of mortality. I don’t think that’s really appropriate. I give
likelihoods. I tell them its most likely they’ll need help with their ADL for the next
six months to a year, it’s very likely that they will be placed in a facility because
they will need this level of care. I use very likely, less likely, that type of
approach."
"Those models are the models that say that there is zero chance of improving
are helpful. And the model that says there is one half of one percent a chance of
improving is not so helpful, because that is the ray of light that enters into the
room that is anything to grasp a hold of. [...] when you say there is a one
percent chance that you can recover or particularly have a good recovery. You
know in a society in which you buy a lottery ticket and have a one in a hundred
and fifty million chance of winning and you will still buy the ticket. I mean how
can you not grab hold of the one percent and hold it to be true."
"Have you ever seen anybody get better like this ever? What percent?” What
they asking for is the rare, rare, rare possibility in the context as opposed to
been 0. And I have seen situations like that where people say ‘well, if it’s not 0, I
just got to keep going”
"Of course all families want a number. They want the chances of that and this.
They all want these numbers. So I try to put it in compartments of most likely
and least likely and leave it at that."
"In terms of actually having a discussion with the family outside of determining a
prognosis, a lot of it is just trying to be honest about the uncertainty and trying to
give them an idea of a range of what to expect."
"The things that we use, we say, “The percentages x, plus or minus y.” Family
members, unless they are very mathematically sophisticated, really don’t
interpret these numbers the way that physicians and scientist interpret these
numbers. They become simplified and used against you later."
"I quantify in terms of a more likely or less likely. I very much avoid giving
percentages because percentages I think, when you have come up with a
percentage you better have damn good data to do that with and most often we
do not have good data for that. So I kind only avoid percentages."
Uncertainty is a
natural part of
communicating
prognosis.
"If you know that it’s about 99%, 98% certainty that this person is not going to do
well, you still leave a little window open.’’
“I just own it. I just say I’m not sure…Usually I’ll have a hunch, that it is going to
go one way or the other, but I readily and openly cop to not being sure and not
knowing.’’
"That is when I stop using quantitative numbers with patients and families
because if I am going to talk about a raise, more than 80% of independent
function defined as being ambulatory at 3 months whether 95% confidence
interval 52% to 91%. If I were really going to provide accurate data to families. I
would probably need to describe it like that otherwise I think I am being
potentially incomplete, dishonest or obfuscating. So once I started to think like
that, I should talk more in qualitative ranges."
"I say the fact of the matter is, that uncertainty is something that nobody has
anyway predicting right now. I can give you data about the lesions, the
locations. I can give you data about recovery of a severe TBI based on
prognostic scores, but even with that there’s always going to be some
uncertainty and I prefer not to give percentages to family."
"I also freely admit to the families that I don’t know the answer to these
questions with any degree of certainty."
"The barrier is ultimately the uncertainty in things. That’s the rub in all of this, is
always a seed of doubt. "
"I tell them that there’s a lot of unknowns and that there is no way for me to
know exactly what the prognosis is, but I can give them an idea based on
structure and exam."
"Then I tell them that I’m not sure and this is the honest truth. I'm never sure
what the timeframe for recovery will be and how long it’ll take. That’s the one
thing that I do tell them. It could take months to years for recovery for severe
TBI."
"Usually I’ll have a hunch, that it is going to go one way or the other but I readily
and openly cop to not being sure and not knowing. "
"I think ultimately people want you to tell them what you would do. I think on a
human to human level that if you don’t know what to do, you ask somebody for
their advice. That’s when I usually will say if this is my family member."
"You have the gift of time then that’s very helpful with families that are really
struggling in terms of uncertainty of prognosis"
"If it’s completely uncertain I just let the uncertainty hang there and I let them
share the burden of that uncertainty even as it’s difficult to watch them struggle’’
"But if the patient is in the grey and I’m not sure then I can sometimes I will tell
them that I’m not sure how long that period will be it could be months, could be
years. I leave that uncertainty there for the family to grapple with."
"So I say I’ve been doing this a long time, I take care of every single person in
here that has this problem, this is one of the busiest centers in the world – We
are one of the biggest trauma centers in America. SO I feel as if I have a fair
amount of experience with this which is why I also understand how often I’m
wrong. All we’re doing here is giving you our best guess and approximation of
what we think the future holds."
"Usually the language that I use is not saying that I know what’s going to
happen in 6 months, rather what I think is most likely, and what I want to know is
if your loved one is willing to take the risk that they don’t turn out to get better for
the smaller chance that they would.’’
Prediction scores
are research tools,
but should not be
applied to individual
patients
"I have had residents who've met families in the ER and looked up an ICH score
or Glasgow Scale and in the ER they've told families that their loved ones have
a seventy eight percent chance of dying. I think that's really unhelpful. I think
one of the problems with some of these tools is that they're going to be
disseminated to the masses and you're going to have people with little
information who have access to a percentage or a likely outcome."
"People who don't understand on a human level – You cannot walk up to a
grieving mother in the ER and tell them that their son has a this much percent
chance of dying. That's just not what they need to hear."
"There’s not a lot of science available to really – Prognosis in TBI is really non
clear cut"
"I think there is benefit to us and residents in teaching ourselves what to know.
Also for research. When you're trying to look at severity of injury between
groups those scales are useful but I have concerns about trying to take
information that's gathered from a population and to apply it to a human."
No false hope
“I think it’s again important not to be equivocal. There is nothing gained by
holding onto false hope. All it does is traumatize everybody more […] There may
be needs for people to come to a closure with the event, where others need to
participate in that closure. But, you don’t leave the door even slightly ajar.”
“[Saying] there is one half of one percent a chance of improving is not so
helpful, because that is the ray of light that enters into the room that is anything
to grasp a hold of. So, that ray of hope becomes a beacon for families – a
beacon that may never actually shine.”