Monday, March 18, 2019

The 2019 Annual Assembly Social Media Recap

by Christian Sinclair (@ctsinclair)

The sun and fun of Orlando has come and gone for those of us lucky enough to steal away from our day jobs and attend the Annual Assembly of Hospice and Palliative Care. Hopefully everyone learned a lot, got re-energized and found their way back home safely.

Thanks to the work of Lori Ruder, (@loriruder), Kristi Newport (@kbnewport), Allie Shukraft (@alifrumcalli) Pallimed was present in force a the meeting through Twitter (@pallimed). Beyond recapping some sesisons and re-tweeting the best tweets from the meeting we also used a few engagement techniques like #hpmRookie19, #hpmBingo and the #hpmTOTD (Tweet of the Day).

Tweet of the Day - #hpmTOTD

This started spontaneously in 2017 as a way to highlight interesting, smart, funny, and meta-tweets from the meeting. We had some many good posts to choose from and you can check them out yourself. This year the voting is open until March 25th for the Tweet of the Conference, so if you have a Twitter account go vote now!

Encouraging new people to tweet - #hpmRookie19

Twitter can be intimdating for a lot of people, so to make it easier to see the benefit, we used #hpmRookie19 to find the new Tweeters and new conference attendees. Once found we aim to make their first experience better through engagement and tips. This year's class of rookies (give them a follow!) includes: Claudia Chou @czchou
Marc Kaprow @doctorkaprow
Kim Wills-Rinaldi @wills_rinaldi
Nathan Riley @BeyondtheMD
Natasha Dhawan @drpallicare
Rebecca Spear @DOcSpear
Doctor Ground @doctorground
Molly Sinert @HospiPharmD
Kevin McGehrin @KmCGehrin
Sarah Belcher @SarahMBlecher
Kayla Overstreet @KaylaMSNRNCPNP
Dave Tran @rollkicksoul Pamela Gordon @pamelathescot
Shkreah Bell @ShkerahB
Kristin Edwards @KristinMDCT
Avani Prabhakar @AvaniPrabhakar2
Kelstan Ellis @kelstanellis
Nathan Boehr @theboehr
Vishal Kapadia @visman21
Christina Capps @cczmd226
Kerry @HPMDoctor

If I missed you and you were new to Twitter this year or this was your first conference let me know and I will update the list!

Overall the numbers this year for Twitter engagement were down from the nearly 2,000 particpants and over 30 million impressions from past Annual Assemblies. I'm not quite sure why that is, and i would love to hear form some of you on why you think this is happening. I have some theories, but want to hear from others and look closely at the data.

Monday, March 18, 2019 by Christian Sinclair ·

Monday, March 11, 2019

Social Media at the 2019 Annual Assembly of Hospice and Palliative Care

by Christian Sinclair (@ctsinclair)

The Annual Assembly of AAHPM and HPNA is this week and if you are going to Orlando, or staying home to keep things running smoothly, social media can help make your conference experience be transformative.  Since 2009, the Assembly has been making use of Twitter to provide additional insight, commentary and sources for the multiple sessions each day. Now things are expanding to dedicated conference apps, Facebook and Instagram. And for the third year in a row, the Tweet of the Day (#hpmTOTD) will bring you the highlights of the conference and #hpmBingo will help make sure you do as much as you can while at the Assembly.If you don't know how to use Twitter to your full potential, just keep an eye out for Tweet Pros and don't be shy. If you just want some general tips for attending the Annual Assembly read up on our handy hints for attending a national conference.

The official hashtag of the conference: #hpm19 (works on Twitter, Facebook, Instagram), use it in every tweet this week!

The Pallimed Network will feature content across multiple platforms.

Pallimed Network Accounts
Official Annual Assembly Social Media Links
American Academy of Hospice and Palliative Medicine: 
Hospice and Palliative Nurses Association:
Social Work Hospice and Palliative Care Network (Not formally part of the Assembly, but having a conference right after)

Monday, March 11, 2019 by Christian Sinclair ·

Sunday, March 10, 2019

Decision-Making in the ICU - The Problem Is Us

by Drew Rosielle (@drosielle)

Annals of Internal Medicine has published a fascinating trial of a web-based surrogate decision-making tool aimed at improving decisions for patients receiving prolonged mechanical ventilation in an ICU.

It's one of the most fascinating trials I've read in a long time, and also somewhat of a monster (in size/scope of data presented) - there are 4, lengthy online supplements attached to it (!), which is daunting, and so I'm mostly just going to write here about what I find most interesting about it.

Which is that I think this may be the trial which should convince us all that what's 'wrong' with ICU decision-making is not a lack of sharing good information -- what is wrong is our entire approach to surrogate decision making.

First the trial, briefly summarized. This was a randomized trial of a personalized, web-based decision aid for surrogate decision makers of patients with prolonged mechanical ventilation. It took place in several ( mostly academic medical center) ICUs in the US. The subjects were primary or secondary surrogates of actual ICU patients (~280 patients in total), all of whom had been mechanically ventilated for 10 days at least, and weren’t anticipated to be immediately extubatable.

The main intervention was that the surrogates received and were asked to interact with a personalized, web-based decision aid tool, which is a fascinating thing that I hope to be able to see in action one day (they have many screen shots in the supplement, but because the tool is connected to real patients there’s no way to access it publicly)

The tool involves giving the surrogates prognostic information about their loved one (based on a prognostic model) which gave an estimation of their loved one’s chance of 1 year survival; educational information about prolonged ventilation, the role of surrogates, and different care goals (eg life prolongation at any cost, maximizing comfort regardless of longevity, etc), and asked the surrogates questions about the patient’s values/preferences. Then the aid presented to the surrogate a ‘goals of care recommendation’, based on those reported values/preferences. The surrogates had an opportunity to disagree with what was presented, and indicate what they thought the actual care goals should be.

(If you’re curious, the prognostic model was probably pretty accurate. The model predicted 1 year survival for all subjects on average to be ~50%, and the actual 6 month mortality--that’s as far out as they have data--was 40%.)

The ‘output’ of the decision-aid was given to the treating clinicians, who were encouraged to incorporate it in the family meeting which was scheduled for day 2 after enrollment for all patients. Control patient surrogates received no decision aid or other information, and just received 'usual care', apart from that everyone was supposed to have a family conference on day 2 post enrollment (and nearly everyone did).

They measured many, many things here, but the major outcomes they were looking at were clinician-surrogate concordance about prognosis, surrogate understanding of prognosis, surrogate well-being both acute and long-term (anxiety, trauma symptoms, etc), patient outcomes like LOS, in-hospital and long-term mortality, etc.

The simple way to summarize their findings is that the intervention had nearly no measurable effect on anything: most importantly on what happened to the patients (eg, ICU and hospital LOS, ICU and hospital mortality, long-term mortality, % who received tracheostomies, % who had discontinuation of life-prolonging technologies, etc), as well as what happened to the surrogates (anxiety and trauma symptoms, satisfaction with care and communication, etc). One of the numerous pre-specified secondary outcomes (changes in a decisional-conflict scale), was slightly better in the intervention group - by 0.4 points on a 5 point scale. Note that the family meetings which were part of the protocol for everyone were recorded and similar content was discussed at these meetings, regardless of randomized group.

The very, very interesting findings were, at least to me, the ‘concordance’ and prognosis findings (if you want to look at this yourself, the best place to go is Online Supplement 3, by the way).

Concordance (meaning surrogate and clinician ‘agreement’ on prognosis which here was measured as chance of 1 year survival) was not improved by the intervention. Fundamentally, that seems to be because surrogate’s assessment of prognosis was essentially impervious to information about prognosis as either presented by the prognostic model in the decision aid or a clinician in the family meeting.

Notably, the physician’s prognostic estimations were quite accurate on average (I don’t know if they had access to the prognostic model prognosis or not). For the entire study the the physicians and model both predicted a ~50% 1 year survival for the patient group on average. The physicians also did a pretty good job of estimating what the surrogates thought the prognosis to be (which was around 70% 1 year survival on average). The surrogates who had the decision aid did a little better at articulating what they thought the physicians’ prognostic estimation was (they guessed around 58% 1 year survival, when it was actually around 49%). Control surrogates, who did not get the decision aid, did a worse job of articulating the physicians’ estimation (they guessed ~67%). However, regardless of what group they were in, the surrogates in both groups articulated a prognosis of around 70% 1 year survival. Ie, the intervention didn’t improve the surrogates’ own prognostic estimation, even though they knew it was significantly different than the physicians’ estimate of survival.

Along these lines, they were also able to show that even after answering questions about what the patient’s values would be, and then being told by the decision aid some sort of conclusion (eg your loved ones care goals fit best with eg, balancing longevity with quality), a large number of surrogates actively adjusted that conclusion (‘disagreed’ with that conclusion so to speak, although the surrogates themselves were the one who gave the answers to the questions about patient values), and almost all of them who did that adjusted the care goals towards being more aggressive (see the figure - this was about 40% of the group).

To summarize: surrogates substantially overestimated patient’s survival, even when presented with the decision aid, and even when they understood that the physician thought otherwise. Many surrogates also disagreed with the goals of care as summarized by their own statements of their understanding of patients’ own values, and wiped that all away to state that the plan of care should be aggressively prolonging life.

There is this idea that what we need to do is somehow say the right words to these terrified, grieving, desperate families, and once we figure out the right words, spoken by the right person/presented in the right way (like a decision aid which focuses on clearly stating prognosis and prompting surrogates to reflect on the patient's values/preferences) that will lead the surrogate/s to make the 'right' decision. 'Right' decision meaning, I guess, the one purportedly the patient would have made ('substituted judgment'), acknowledging that that is typically unknowable. The problem with this model of surrogate decision making is that it does not at all seem to be what surrogates actually do, and data from this study basically show even when surrogates know things about a patient's values and preferences, many of them are unwilling to 'enact' those. Indeed, a substantial number of the surrogates in this study seem impervious to 1) objective data-based prognostic information, 2) accurate prognostic information shared by the patient's treating physician, and 3) acknowledgement of the patient's own values and preferences when they make decisions. And, in fact, it appears that a substantial number of surrogates don't really make any decision at all, and you wonder if they even perceive there to be any decision to be made, because the only 'decision' they are going to endorse is 'do everything.’ I’m really grateful for this study for really showing us that this approach may not be helpful.

And my question to us, collectively, as a medical community, is: so what? Do we think this is a problem? And if so, why? Why is anyone surprised or perturbed that fearful grieving families don't make the same decision that an ethical robot would? The only reason we think it's a problem is because there's been this collective decision the last several decades that, in fact, the right people to be making decisions about what technologies to be applying to a dying body are not the highly trained health care professionals, most of whom went to school/trained for over a decade (and sometimes much longer) just so they can know their way around an ICU, but the shocked, grieving, fearful families, who hear us demand from them, again and again, and in ways that make them feel that they have their loved one’s life in their hands, What do you want us to do? I ask this because if you listen closely to your colleagues, and even palliative people sometimes, you get a sense from some of them is that they believe the problem here is the grieving families, who are ‘in denial’, or ‘unrealistic’, or ‘just don’t trust us’. And, fundamentally, I think that’s the wrong take here.

We’re the problem, not the families.

It also bears noting that in the entire history of our species up until the mid 20th Century, virtually no one had to make end of life decisions for their loved ones, because there wasn't anything that could even be done. Now, it's not at all uncommon for us to have conversations with people about highly technical decisions about where tubes go (or don't go) into their dying relatives' bodies. No one should be surprised it often doesn't go well, and that it's a 'problem' that can't be fixed with communicating data more artfully.

I get it; this is complicated.

There are, for instance, a certain number of patient/families for whom this very nice idea I described above, the happy version of how surrogate decision making is supposed to work, does seem to ‘work.’ Honestly, I’m not too worried about those families - we just need to get them good, realistic information, and they’ll make patient-centered decisions. I also get how unrealistic (and unwise) it is to think we are going to go back to the authoritarian-paternalism days, where an individual physician's personal judgment, subject to all its biases and blind spots, is the unassailable measure of a good decision.

The only way out of this is forward, although I don't myself here have any specific 'policy' proposal to fix this, and I worry all the focus on patient choice (which originally was meant to be a way to empower patients in saying "No" to things, not a way of us in medicine of giving up our role in decision making) just makes things worse, by amplifying this idea that families get to choose medical treatments off a menu at the end-of-life, when there is nowhere else in medicine where we really do that. All the things we are taught to do in palliative care - focus the conversation on the patient, emphasize long-term health and functional outcomes and discuss care goals in that context as opposed to focusing on technical questions, careful, interprofessional attention to the grief and loss the family are experiencing, and actively making recommendations about what we think the best plan is (based on what we know of the patient) - help, undoubtedly, to an extent. But it’s not enough.

For more Pallimed posts about journal article reviews.
For more Pallimed posts by Drew click here.

Drew Rosielle, MD is a palliative care physician at the University of Minnesota Health in Minnesota. He founded Pallimed in 2005. You can occasionally find him on Twitter at @drosielle.


1 Cox CE, White DB, Hough CL et al. "Effects of a Personalized Web-Based Decision Aid for Surrogate Decision Makers of Patients With Prolonged Mechanical Ventilation: A Randomized Clinical Trial" Ann Int Med. 2019. Vol 170, 285-297.

Sunday, March 10, 2019 by Drew Rosielle MD ·

Tuesday, March 5, 2019

2019 #hpmParty - The 13th Annual Pallimed - GeriPal Party

by Christian Sinclair

The Annual Assembly of Hospice and Palliative Care is only a week away, and it is time to announce the details for the 13th Annual Pallimed-GeriPal Party!

Just so you all know from here to eternity, the answer to the question of "When is the Pallimed-GeriPal party?" is Thursday night at 9pm local time the week of the Annual Assembly of Hospice and Palliative Care (but just to be clear it is not an official part of the meeting). We love meeting other hospice and palliative care clinicians and advocates, so feel free to invite and bring any colleagues or new friends with you as this is not an exclusive crowd.

This year we will have the traditional pub crawl and returning for the second year the #hpmParty ESCAPE ROOMS!

For the pub crawl we will be starting at Cuba Libre at 9pm in the Saratoga room Thursday, March 14th. Around 10pm, we will likely be moving on to the next destination. Like always though, these are rough estimates of time, so if you want to know the details, follow the hashtag #HPMparty on Twitter.

We are also partnering with The Escape Game in Orlando, about 1.5 miles north of the conference. We have three rooms booked this year with room for 8 people in each room, and as a new twist this year, each room will have a secret palliative care celebrity guest, so that means there are only 21 slots available! The starting times for the rooms are 830pm, 840pm and 850pm and each room takes no more than one hour, so you will have time to join the pub crawl in progress (or not at all, if that is not your thing!). If you want to do the escape rooms, book your tickets ASAP. No need to buy anything or sign up for anything if you are just doing the pub crawl. You will want to get to the Escape room 15 minutes ahead of your scheduled time and it takes 10 minutes by car and 30 minutes by foot. Be on time!


Ways to follow the party from near or far: #HPMparty twitter feed

And if you are not already doing it -
- Follow Pallimed on Facebook, Twitter and Instagram
- Follow GeriPal on Facebook, Twitter and your favorite podcasting app.

Tuesday, March 5, 2019 by Christian Sinclair ·

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