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.

References

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!

ESCAPE ROOM SIGN UP PAYMENT

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 ·

Wednesday, February 20, 2019

Introversion and Hospice & Palliative Care: Insights from ‘Quiet’ by Susan Cain

by Ben Skoch (@skochb)

I made some interesting observations during my first ever trip to the AAHPM National Assembly in Boston, almost a year ago. It seemed to me that I was not the only one favoring my phone screen over introducing myself to hundreds of new people. My new Twitter follower to friends IRL ratio (‘In Real Life,’ for those wondering) was about 25:1. I noticed people often trying to find seats in a lecture hall at least a few spaces away from others, to a point where some rooms looked like those old science problems involving the diffusion of a gas.



I wondered to myself how many people here are introverts like me? Some months after that conference, I decided to poll the #HPM Twitter family to see if I could get a sense of how many identify as introverts. While 72 responses may not seem like an overwhelming sample size, I couldn’t help but feel at least partially validated with three-quarters identifying as introverts. Does the field of Hospice and Palliative Medicine naturally attract introverted people?


It wasn’t until I read “Quiet: The Power of Introverts in a World That Can’t Stop Talking” by Susan Cain, that I discovered some potential explanations. At one point in the text she describes her interviews with Harvard Business School students who learn best in “learning teams” and describe socializing as “an extreme sport (47),” situations that would make any reserved person naturally uncomfortable. I recognized some of her sentiments seemed to overlap significantly with my years of medical training, and I couldn’t help but think that she was describing so much of my life. I sure did not use my first trip to AAHPM’s Annual Assembly (in Boston no less, just minutes from the entertainment enthusiasts that Cain describes) as a chance to socialize as much as physically possible.

But what really piqued my interest was later in the book when some parallels between the natural tendencies of introverts and the work required in the world of Hospice and Palliative Medicine started to become more apparent. A few examples:

Introverts might be wired to handle the emotional ups and downs of Palliative Medicine more naturally. How often have those in Hospice and Palliative Medicine heard, “That must be so hard,” or “Isn’t that so sad all of the time?” Cain describes an interview with Janice Dorn, MD PhD (Psychiatry and Neuroscience) who counsels people involved in the trade market. Dorn says “introverts…are more successful at regulating their feelings…they protect themselves better from the downside (158).” She suggests that this may be in large part due to the way we are wired, as extroverts are more excitable and are more likely to “find themselves in an emotional state we might call ‘buzz.’” So perhaps introverts are better biologically equipped to handle sad and tough conversations.

It’s an introvert’s natural tendency to let others talk. I am confident that one of the most important things I do for my patients is to listen as they tell their stories. By providing “therapeutic silence” and “active listening,” I offer them a chance to explore their emotions. This is how I build trust so that we can work together to make personalized decisions. In her book, Cain presents the findings of psychologists John Brebner and Chris Cooper, “who have shown that extroverts think less and act faster…introverts are ‘geared to inspect’ and extroverts are ‘geared to respond (166).” Many physicians find it difficult to simply sit and listen, as evidenced by a study from 2018 that showed a median time of 11 seconds before physicians interrupted their patients.1 Perhaps this is a system flaw. As students, we are continually encouraged to be more extroverted; then during residency, we are trained to ask specific questions and document succinctly to be as efficient as possible. By the time one becomes an attending physician, we unconsciously adhere to this learned sequence. Or perhaps some of us are just wired to listen longer and let others talk, and we simply need to find a niche where this is useful.

Maybe the most compelling connection between Quiet and Hospice and Palliative Medicine is when Cain describes how introverts might get the most out of life. “The secret to life is to put yourself in the right lighting…Use your natural powers – of persistence, concentration, insight, and sensitivity – to do work you love and work that matters (264).” When people who work in Hospice and Palliative Medicine are asked to describe their work, common answers are rewarding, satisfying, gratifying, etc. I think this is likely because many in Palliative Care are introverted and they have simply found the “right lighting” for their natural abilities: an unflappable personality in the face of a wide range of emotions, listening intently to their patients, and using persistence, concentration, insight, and sensitivity to help patients and families struggling with some of life’s greatest challenges.

We all have special gifts that make us unique, and it is up to us to figure out how to use those gifts to help others and make the world a better place. As Cain details well in Quiet, it may be that extroverts have an advantage in utilizing their gifts in our modern society. Maybe our culture inhibits some introverts from recognizing their strengths and talents until later in life when they discover pastimes, relationships, and work that enhance these traits. Perhaps the world needs introverts to flourish like those examples Cain highlights: Dr Seuss, Rosa Parks, JK Rowling, and many others. Once introverts find their “right lighting,” they can build a life that is fulfilling and do work that matters. Maybe they will even wind up in a field like Hospice and Palliative Medicine where there is a connection between the strengths of introverts and the nature of this sacred work. I think if you are an introvert looking for work that is abundantly rewarding and can be a natural fit for your God-given abilities, perhaps Hospice and Palliative Medicine is worth your consideration. It might be the dream job that gets you excited to start each day, even if you have a hard time showing it.

Ben Skoch, DO, MBA, is a Hospice and Palliative Medicine physician at the University of Kansas Medical Center. Outside of Family and Palliative Medicine, he enjoys most sports, black coffee, and most especially spending time with his wife and two adorable children.

(Links are Amazon Affiliate links which support Pallimed. Also, please shop at your local bookstore.)


References

1. “Quiet: The Power of Introverts in a World That Can’t Stop Talking” by Susan Cain

2. Ospina, NS et al. Eliciting the Patient’s Agenda- Secondary Analysis of Recorded Clinical Encounters. Journal of General Internal Medicine. January 2019; 34: 1: 36–40.

Wednesday, February 20, 2019 by Pallimed Editor ·

Monday, February 11, 2019

Goodbye to Compounded Analgesic Creams

by Drew Rosielle (@drosielle)

Annals of Internal Medicine has just published one of the better trials of compounded analgesic creams I've yet to see, and unfortunately it's pretty damning.

It's a randomized, double-blind, placebo-vehicle controlled, intention-to-treat, 3 parallel armed study of 3 different compounded creams for adult patients (median age ~50 years, ~50% women) with localized chronic pain (the 3 groups had neuropathic, nociceptive, or mixed pain syndromes). It took place at Walter Reed. Each arm had about 130 subjects (which, for this type of research, and compared to many other investigations of compounded creams, is quite a lot). Patients needed to have chronic pain (longer than 6 weeks), rated at least 4/10, and localized to a body area or two extremities. Broadly speaking about half the subjects' pain was incited by an injury or surgery. Pain was classified as nociceptive vs neuropathic vs mixed based on a pain physician's assessment, more or less. About 20% of patients were on systemic opioids.

Subjects were prescribed one of 3 compounded creams (or the placebo/vehicle cream which was PLO) and asked to apply it to their painful region three times a day:
  • Neuropathic: 10% ketamine, 6% gabapentin, 0.2% clonidine, and 2% lidocaine
  • Nociceptive: 10% ketoprofen, 2% baclofen, 2% cyclobenzaprine, and 2% lidocaine
  • Mixed: 10% ketamine, 6% gabapentin, 3% diclofenac, 2% baclofen, 2% cyclobenzaprine, 2% lidocaine

The primary outcome was average pain score after 1 month of treatment. They presented several prespecified secondary outcomes too. The study had 90% power to detect a pain reduction of 1.2 (out of 10) points with 60 patients per treatment arm, which they met.

Basically there weren't any statistically, let alone clinically, meaningful differences between the groups, regardless of pain type. For all groups, pain was reduced at a month by around 1-1.4/10 points on the 0-10 NRS, regardless of receiving active drug or placebo cream. Secondary outcomes including patient judgement of a positive outcome (ie, the percent of patients who reported they considered the cream a success) were the same between all the groups too (around 20%). Health related quality of life did not differ either between groups at a month.



This study is one of the largest and best-designed study I'm aware of of these creams, and the findings are pretty clear: such creams benefit patients via placebo mechanisms, aka they don't work.

Note that there is a separate body of research on some other topicals which should not be confused with this study. Eg, the 5% lidocaine patch for post-herpetic neuralgia, topical capsaicin for a variety of neuropathies, and at least some topical NSAIDs for osteoarthritis, and topical opioids. I'm not broadly endorsing those either - it's complicated - however they weren't tested here and the take home point is we should stop making our patients pay exorbitant out of pocket costs for these compounded analgesic placebos, not necessarily those others.

Particularly for painful axonal neuropathies, many of us struggle with how to control those adequately, especially chemotherapy induced ones which don't respond well to most systemic drugs, and I've ordered plenty of fancy creams in the past for my patients, most of whom paid out of pocket for them, and I think it's time to stop doing that.

For more Pallimed posts about journal 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.

References

1 Brutcher RE, Kurihara C, Bicket MC, Moussavian-Yousefi P, Reece DE, Solomon LM, et al. "Compounded Topical Pain Creams to Treat Localized Chronic Pain: A Randomized Controlled Trial." Ann Intern Med. [Epub ahead of print ] doi: 10.7326/M18-2736

Monday, February 11, 2019 by Drew Rosielle MD ·

Friday, January 11, 2019

A Randomized Controlled Trial for Fan Therapy in Dyspnea

by Bob Arnold (@rabob)

Winter suits me just fine since I do not like heat. I have a lot of sympathy for patients with chronic obstructive lung disease who do not have an air conditioner during the summer. I am told that there is nothing worse than sitting in hot, humid weather and not being able to breathe.

As a palliative care physician, I love fans. When my patients are short of breath and opiates do not work (1,2) I send their families down to the local ACE hardware store to buy a hand-held fan. Therefore, I was excited to see an article in the Journal of Pain and Symptom Management on fan therapy being effective in treating dyspnea in patients with terminal cancer. (3) The previous data for fans (4) has been meager so I have always been a bit hesitant to recommend fans in my academic hospital for fear that the other doctors would think I was goofier. I was hopeful that this article could make a difference in how they thought about me (a bar that might be too high for any single article).

Briefly, this was a randomized controlled trial of 40 palliative care unit patients with advanced cancer in Japan. The patients all had dyspnea at rest with a score of at least 3 points on a 0-10 numeric grading scale, oxygen saturations greater than 90%, and an ECOG Score of 3-4. The only patients who were excluded were those with a fever, anemia, or a disease or treatment affecting the trigeminal nerve (the purported mechanism for the action of fans). The intervention was a fan blowing across one side of the patient’s face for five minutes. The control group was not blinded but did have air flow directed onto the patient’s exposed legs for five minutes. The outcome measure was a change in the patient’s dyspnea score.

The two groups were similar in characteristics and causes of dyspnea. Importantly, there was no difference in the oral morphine equivalent doses at baseline (although the patients who got leg fans had slightly higher doses; the investigators tried to control for this by having a washout period before initiating therapy). The patient’s cause of dyspnea and their performance status also did not differ

What did differ were the results. People who had fans to the face had a greater change in their dyspnea score (-1.35; range of -1.86 to -.84 versus -0.1; range -0.53 to 0.33). More importantly, 80%of patients who had a 1 point reduction in their dyspnea rating and 35% had a reduction of two or more points versus 25% and 5% in the fan to the leg group.

Was the study valid?

They had to screen a lot of patients to enroll 40. This makes me worry whether this is a very select group of patients that may not be representative of the general patients I see. On the other hand, they were palliative care unit patients with advanced cancer who sound like my patients. The assignment of patients to the two groups was evenly randomized; all the patients were accounted for at the conclusion and there was complete follow-up. The study was not blinded, and I could not tell if the people who were collecting the data knew which groups the patients were in as that might be a problem if they assessed the symptom differently.

Were the results clinically important?

Well this is a bit of a problem. When you try to decide what counts as clinically significant on a dyspnea scale, there is a fair amount of variation depending on the scale. However, in my very quick search of the literature regarding visual analogue scales it seems like a clinically important change is between 10-20 on a 0-100 scale (this would translate to one or two points on the scale used in this study - more on Minimally Clinically Importnat Difference here). So, the difference in this study may be clinically important.



Might other factors have resulted in this difference?

I think the investigators did quite a good job in trying to control for other medications that the patients received that might have increased or decreased dyspnea. I was particularly impressed with how they handled and reported on opiates.

Does this change my practice?

This is a little bit like the aromatherapy article that I reviewed. There is almost no risk and my experience, like the study, is largely positive, so it did not really change my practice because I was doing it anyway. Though an article might help me to lead to a more educated and intellectual discussion with my residents and fellows – the answer to that is yes and that is always a good thing. (I am currently trying to figure out if folks think I am less goofy).

More Pallimed posts from Bob Arnold can be found here.
More Pallimed journal article reviews can be found here.
More Pallimed posts on dyspnea can be found here.


Robert Arnold MD is a palliative care doctor at the University of Pittsburgh and a co-founder of VitalTalk. He loves both high and low brow comedy (The Good Place and Nanette), pop culture (the National Enquirer and Pop Culture Happy hour) and music of all kinds (not opera tho!)

References

1 Clemens K E,, Quednau I, Klaschik E. Use of oxygen and opioids in the palliation of dyspnoea in hypoxic and non-hypoxic palliative care patients: a prospective study. Support Care Cancer 2009;17:367–77

2 Kamal AH, Maguire JM, Wheeler JL, et al. Dyspnea review for the palliative care professional: treatment goals and therapeutic options. J Palliat Med. 2012. 15, 106-14.

3 Kako J, Morita T, Yamaguchi T, et al. Fan Therapy Is Effective in Relieving Dyspnea in Patients With Terminally Ill Cancer: A Parallel-Arm, Randomized Controlled Trial. JPSM. 2018. Vol 56, 493-500.

4 Bausewein C, Booth S, Gysels M, et al. Effectiveness of a hand-held fan for breathlessness: a randomised phase II trial. BMC Palliat Care. 2010; 9: 22.

5 Riles AL. Minimally Clinically Important Difference for the UCSD Shortness of Breath Questionnaire, Borg Scale, and Visual Analog Scale." COPD. 2005. Vol 2, 105-110.

Fan Therapy Is Effective in Relieving Dyspnea in Patients With Terminally Ill Cancer: A Parallel-Arm, Randomized Controlled Trial.

Friday, January 11, 2019 by Pallimed Editor ·

Tuesday, January 8, 2019

Grieving with Mr. Pickles: Thoughts on Showtime’s ‘Kidding’

by Christine Bridges

“I don’t think I could stand to be around that much death. All that sadness!” When I announced my career change and plan for a Hospice and Palliative Medicine (HPM) fellowship the reaction of most, in healthcare or not, was concern for my emotional wellbeing. Internally my initial response was: 1. Why do people think that death is reserved for HPM alone? and 2. Death and grief are all around, they are a part of life.

Perhaps it is my current vocation, but it seems that modern media agrees. Death and grief are showing up in unexpected formats. Most recently the new ‘dramedy’ on Showtime, ‘Kidding,’ starring a shockingly sedate Jim Carrey. In the pilot episode, we see our central character Mr. Pickles, a pseudo- Mr. Rogers, waiting to be interviewed on Conan Obrien’s talk show. We learn quickly that this famous man recently lost his son. The episode draws us into his life and the way his son’s death has ricocheted through his family. We see him turn to his work to cope with his grief. Mr. Pickles is planning a show where he will openly address his son’s death. Quickly the old anthems come, “People don’t want to hear about death.”



I imagine myself and my HPM colleagues nearly jumping from our chairs, arms waving, “But people do want to talk about death, they do!” We have learned this the hard way, stepping into complex family meetings and hearing that no one has talked about death or the dying process. Now at the very last inescapable moment, there it is, death on the doorstep. 10 years ago Holly Prigerson's research group published a study showing that earlier discussions around end-of-life care lead to lower rates of caregiver depression. When patients and families are surveyed about preferences regarding the outcomes they are seeking for the end of life they list ‘knowing a doctor is comfortable talking about the end of life,’ and ‘clear decision making, preparation for death.’ A decade later the average length of stay in hospice remains a minuscule 2 weeks. Fourteen days is a tiny window to get to know a patient, their family, their goals, and manage their most difficult symptoms. With that small time to prepare, families are confronted with death more suddenly than they expect.

This was the most commonly repeated experience in a recent spousal-loss support group that I attended. So many of the remarkable people who filled that room echoed each other’s frustrations that the medical community had not told or prepared them for death. At the end of life their own doctor seemed to indicate this outcome had been inevitable. The doctor knew Ms. Jones or Mr. Smith was dying, but the patient and family did not. The spouses mentioned the legal and practical concerns of managing shared assets, but they also mentioned the missed chance for one last vacation, or one last day at home together. Doctors can talk about death, or we can avoid the topic Death comes anyway, and it leaves grief behind as its last gift.

I have a slightly unique perspective, losing my father unexpectedly when I was 20 years old. The other day in lecture the organ and tissue donation organization shared about their work in our community. They showed a picture of the medal they give donor families. That same medal sits next to our brown leather family Bible because my father was also a tissue donor. I felt lost, for just a few breaths and it becomes clear that my work of grief may never be done. Even though we are healers, we as medical providers have all experienced loss. How does our past loss affect our future work? How do we carry our personal and professional losses with us and allow them to be transformed into healing? The opportunity exists for us to help our patients and family begin their journey with grief together, to start that difficult journey through grief hand in hand.

Mr. Pickles compares grief to losing an object that you can never find again. He sings about feelings, letting us know that there are no right or wrong emotions. He argues with producers who do not think children can handle talking about death as if children do not grieve. Perhaps parents, much like providers, can feel out of control, torn free of their moorings when the discussion turns to death. Just like a parent, we must help with the transition from death to grief. There are no shortcuts in grief. We are all grieving something, loss of freedom, or youth, or expectation, and often, missing the people we have lost. We in healthcare cannot use our work as a tool to avoid grief, but like Mr. Pickles, use our losses as a way to do better and give back to those around us. Spending a moment in the shoes of those actively grieving is humbling. It is in service to the goals of patients and their loved ones that we must talk about death.

As physicians, we fear causing harm by sharing ‘bad news.’ The idea that we could prevent grief, to keep it at bay by refusing to allow its presence in the same room as our precious patient, may be a dangerous one. If we listen to our patients, listen to the wisdom even in a TV show, we hear the truth: our patients want to know, and their families need to know that death is imminent. It is not always the patient’s death or family’s grief that we dread. We must recognize our own fear of grief, our sense of failure, our frustrations at being left with uncertainty. We as the medical community must conquer the fear of our perceived enemy: death. As my father often said, “We all leave this world sick enough to die.” It is a simple truth that we are all mortal. It is a complex challenge to acknowledge this in the practice of modern medicine.

I look forward to taking the journey with Mr. Pickles and his family. I will try to make death an old friend, and grief a teacher.

Christine Bridges, MD is a hospice and palliative medicine fellow at the University of Louisville Health Science Center. She enjoys baking and watching zombie movies with her husband.

Wright AA et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008 Oct 8; 300(14): 1665–1673.

Steinhauser KE, Christakis NA. Preparing for the End of Life: Preferences of Patients, Families, Physicians, and Other Care Providers. Journal of Pain and Symptom Management. Volume 22, Issue 3, September 2001, Pages 727-737.

Steinhauser KE, Clipp EC. In Search of a Good Death: Observations of Patients, Families, and Providers. Annals of Internal Medicine. 132(10):825-832

Tuesday, January 8, 2019 by Pallimed Editor ·

Tuesday, January 1, 2019

First Ever Medical Humanities Chat (#MedHumChat)



by Christian Sinclair (@ctsinclair)

What started off as a spontaneous tweet by resident Colleen Farrell, MD (@colleenmfarrell) generated a swell of interest from the health care Twitter community and now is being fully realized with the first Medical Humanities chat on Twitter (#MedHumChat) starting tonight January 2, 2019 at 9pm ET.

While not directly focused on our field, we know many hospice and palliative care clinicians have a deep appreciation and connection to the humanities and thought this chat would be of significant interest to the Pallimed online community. We know how hard it is to get Twitter chats started and sustained, and since this chat occupies the same time frame as the old weekly #hpm chats, many of you may be looking for something to fill that gap we left open back in 2017.

Dr. Farrell was kind enough to answer some questions about the chat below.

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CTS: What key reasons make the humanities are important in training of clinicians?

CMF: Oh so many reasons! My organic chemistry professor in college (David Richardson at Williams) urged me to take classes to “understand the human condition.” (I ended up no sticking with my chemistry major as planned and majored in women’s and gender studies with a minor in Spanish.) I think so much of what we do in medicine is trying to understand the human condition, but our ways of doing so in medicine are somewhat limited. For millennia, humans have been telling stories and creating art to make sense of human experience and the mysteries of life and death. We sometimes make the mistake of thinking we only need modern medicine to make sense of life and death but so much mystery remains. I find turning to stories and art helps me make sense of the vastness of what my patients are experiencing and my own experience as a doctor. I think art ultimately raises more questions than it answers, and when it comes to suffering and death, what we need, as doctors, is to recognize the unanswerability of these questions and at the same time the vital necessity of embracing them.

I wrote my senior thesis on the early years of the AIDS epidemic in the US, focusing on the experiences and responses of gay men in particular. (I worked with an incredible US historian Sara Dubow.) I read a lot of patient memoirs, studied the AIDS Quilt and its role in collective memory, and examined artistic representations of Kaposi’s sarcoma. My take away from the project was that illness isn’t fundamentally biomedical with social overlays, but rather a fundamentally social and biological phenomenon. The two simply can’t be separated.

CTS: What Twitter chats have you followed or participated in that might have inspired this?

CMF: I’ve been peripherally following the #womeninmedicine (Sundays 9pm ET) chat. That’s what introduced me to twitter chats. And though I’m not an active participant myself, I’ve seen the sense of community it’s created and how empowering it has been for so many women. The internet gets a bad reputation. A place where people go because they can’t face the real world. But the internet can be a force for good. It creates space to say honest, vulnerable things you maybe can’t share in your normal environment. And it allows connections between people who need each other but are often isolated from each other, whether it’s women in medicine or folks with disabilities.

CTS: What has surprised you most about the response to your initial tweets?

CMF: About the chat? I was so surprised people are so interested! I really just tweeted the initial idea as a whim. I really hadn’t thought it through. But then there was so much interest, I thought maybe I’d touched a nerve, identified some kind of gap in people’s experience with healthcare. Maybe. So I’m taking it on as an experiment. We’ll see how it goes!

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The two pieces of work that will be discussed at the first #MedHumChat will be “Practicing Medicine Can Be Grimm Work” by Valerie Gribben and “Intensive Care” by Jane O. Wayne.



I strongly encourage the online #hpm community to come out and support this first #MedHumChat January 2nd at 9pm ET. You can find out more by following @MedHumChat and @colleenmfarrell)

Christian Sinclair, MD, FAAHPM is the editor-in-chief of Pallimed, co-founder of #hpm chat, and palliative care physician at the University of Kansas Health System. When he isn't writing for Pallimed, you can probably find him updating one of several social media accounts to help advocate for hospice and palliative care.

Tuesday, January 1, 2019 by Pallimed Editor ·

Monday, December 31, 2018

Writing a Book

by Robert Macauley

I could write a book about that…


But do I really want to? That’s the question I asked myself a few years ago, when I was invited by Oxford University Press to submit a formal proposal for a comprehensive book on the ethics of palliative care. So I reached out to mentors for advice, and they all said the same thing: Enlist twenty of your friends to each write a chapter, and you can be the editor.

Sage advice, which I didn’t take. Partly because I like challenges. Partly because I don’t really like the unevenness of multi-author texts. And partly because I drastically underestimated how much time and energy it would take to write such a book single-handedly.

Rita Mae Brown once said that “good judgment comes from experience, and experience comes from bad judgment.” I’m not sure if my decision constitutes bad judgment, but it gave me a lot of experience that might be helpful to others who are thinking about writing a book.

Can you really write a book about that?


In formulating my outline, I divided the content into thirds:
   - One-third I could write without much preparation (for the pediatrics section, it helped to be a pediatrician)
   - One-third I knew a bit about and needed to deepen my knowledge (like palliative sedation)
   - One-third I needed to start from the ground up (for the dementia section, it didn’t help to be a pediatrician)

In the process of writing, I realized that I had a long way to go in areas where I’d thought I was savvy, while knowing more about other stuff than I’d given myself credit for. So it’s important to determine where you’re starting from and how far away is the finish line.

Also figure out how much “credit” you’ll get for writing a book, such as by inquiring of your dean/chair/promotion and tenure committee. Each chapter was expected to be the quality of a publishable journal article, but most institutions give you more credit for twenty peer-reviewed publications than one book.

Even if you can write a book, do you want to?


The British comedian Peter Cook once said:
I met a man at a party and he said, “I’m writing a novel.”
I said, “Really? Neither am I.”
The idea of writing a book is romantic, but actually writing one is a slog. It involves setting (and missing) lots of deadlines, declining cool opportunities that could distract from the “big project,” and encountering annoying headlines about how textbooks are dead.

Does the world need the book you want to write?


There are a lot of books out there. Some address really narrow topics that appeal to only a few people, while others try to take a unique spin on a topic that others have already covered. In rare cases, there may be a need for something that hasn’t been written.

In researching my book proposal, I was ready to find a comprehensive book on palliative care ethics that was clinically relevant, historically informed, and philosophically rigorous. If someone else had already written it, I was ready to walk away. But no one had, so I gave it a shot.

Be strategic


   - Before starting, read the contract carefully. My attorney (a.k.a. my sister) reviewed mine, and this time I (thankfully) took the advice. Evidently, even boilerplate language can be changed if you stand your ground.
   - Block time on your calendar, rather than relying on the crumbs left over from a busy clinical day. (A sabbatical is a great idea if you can pull it off.)
   - Be willing to cut into personal time (like evenings and weekends) to find bigger chunks.
   - Be strategic with teaching topics: when I was asked to give a talk, I would choose a subject covered in the book so all that lecture prep fit seamlessly into the manuscript.
   - Dare to satisfice, which is a combination of “satisfy” and “sacrifice.” In other words, if you demand that every word be perfect, every reference be the most relevant and up-to-date, etc., you’ll never make it to page 200 (let alone, in my case, to page 570).

Gather a team of rivals


I did call those twenty knowledgeable people but instead of asking each of them to write a chapter (as my mentors had suggested), I asked them to offer feedback on one. Taking a lesson from Abraham Lincoln, who famously compiled his executive cabinet from old rivals, I made a point of not choosing “yes-people.” No former students or colleagues who seem really smart because they tend to agree with me.

If I asked friends to review a chapter, they had to be good enough friends that they felt comfortable using strong words, like weak and sucks. If I asked for help from folks I didn’t know as well, they had to be an expert in that field, ideally, someone whose viewpoint differed from my own. If there were holes in my arguments, I wanted reviewers to find them. And I was struck, time and again, by the generosity of people who made time to review a chapter and the candor of those who couldn’t.

There’s a thin line between love and hate


I loved the idea of writing a book. I was thrilled when the proposal was accepted. I felt fortunate to have a reason to dive deeper into the field I love.

Over time those emotions shifted. I resented lost opportunities. I became demoralized when the finish line stayed perpetually out of sight. I hated—there, I said it—reading a section over for what I thought was the final time, only to discover weak arguments and outdated citations.

What kept me going? The point of no return. By the time I fell out of love with the idea of writing a book, I’d invested too much time and heart to turn back. So I named the emotions I was feeling–I am a palliative care doc, after all—and kept on writing, being strategic, satisficing, etc.

The end


I never really believed it would get done. When my editor called to say that the books had been printed and were being shipped to by sea, I thought for sure the freighter would sink, the Russians would hack my computer and erase all the electronic copies, and I would be left with piles of highlighted articles that I barely remember reading.

But a week later a box of books arrived at my door, complete with heart-warming “blurbs” from some of my palliative care heroes. My kids saw Dad’s name on the cover, and the dedication to them on the first page. The omnipresent guilt of the last five years—when no matter what I was doing, I was perpetually aware that I could have been working on the book instead—dissolved into thin air.
And in that moment, it was all worth it.

Robert Macauley, MD, FAAHPM, is Cambia Health Foundation Endowed Chair in Pediatric Palliative Care at Oregon Health and Science University. His textbook Ethics in Palliative Care: A Complete Guide—which Ira Byock has called “a new classic” and Diane Meier describes as “a brilliant distillation of history, culture, and clinical practice”—was published by Oxford University Press.

Monday, December 31, 2018 by Pallimed Editor ·

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