Monday, November 11, 2024
Bluesky!
For more Pallimed posts by Dr. Sinclair click here.
For more Pallimed posts about the profession click here.
For more Pallimed posts about Twitter click here.
Christian Sinclair, MD, FAAHPM is a palliative care physician at the University of Kansas Health System, editor-in-chief of Pallimed, and trying to keep up a resolution to write more about palliative care in 2022. Which he failed at. And decided not to make that resolution in 2023, nor 2024. In fact there is a draft post titled "The End of Pallimed" that he never got around to finishing.
Monday, November 11, 2024
Monday, January 18, 2021
Over the past two years I have been working to increase the profile of the Journal of Pain and Symptom Management as the associate editor of social media. In that time, I have come to make a few observations on the current state of social media use by palliative care journals and researchers that I would like to share with you dear readers along with some statistics. Could I make all of this into a paper, published in one of said journals? Possibly. But curiously enough I am looking to effect positive change quickly, so for now we will go with a blog, some Tweet threads and data visualizations. The article can come later!
Over time I will be looking at the social media ecosystem including research organizations, researchers and academic programs, but today the focus will be on the journals.
First off, do you follow any of the main palliative care journals on Twitter, Facebook or Instagram? How many are there even to follow?
I will tell you it is not necessarily easy to find them. No unified place to find them all, no organizing hashtag that is in all of the bios. I have been following 14 Twitter accounts, 10 Facebook Pages, and 3 Instagram accounts for palliative care journals. And so far to my knowledge, there are none on Snapchat nor TikTok. I have not been collecting data on podcasts nor YouTube either, but those areas are good for exploration. If I am missing any or my stats are off, please let me know.
If you want to start following any of them, here are links to make it simple:
A Twitter List maintained by the JPSM Twitter account.
I have been taking some publicly available stats over the past few months. My hope is to check in every once in a while here and likely on Twitter to see what the different accounts are doing that is helping to promote palliative care research online. Let’s take those good social media practices and replicate!
While follower numbers do not equal engagement or influence they are a fair proxy for measuring who is getting people’s attention. The clear leader on each platform is the journal Palliative Medicine. The editorial team has consistently published good content on each of the platforms, has an easy to find journal title, and appears to get good engagement from researchers. While Supportive Care in Cancer has been around for a while, it is new to Twitter, and has already been gaining followers at a rapid pace since debuting in Fall 2020. A new journal Palliative Medicine Reports also recently joined Twitter in May 2020 and has been making ground on some of the more established accounts, now ranking 10th out of 14.
As I am creating social media posts for the Journal of Pain and Symptom Management, it can be surprisingly difficult to find researchers on Twitter to tag them and help promote their work. In a later post focusing on researchers and research organizations, I will share why we need to remedy this absence from the digital public square. (but here is a quick summary to show you why it matters!)
#SoMe in academic research. We have actual RCT data that show that Twitter promotion can increase rates of downloads and traditional citation counts. Also having a graphical abstract increases citations and downloads compared to tweets with no graphic. . pic.twitter.com/CEFrLKmLmr
— Erin D. Michos, M.D. (@ErinMichos) August 20, 2020
What is interesting to me is that not all the journals follow each other on Twitter. Above is a table showing which journals follow other journals. Start on the left hand side and ask “Does _____…” then move to the top and complete the question “Follow _____?” It is important for the journals to follow each other and possibly help promote a healthy environment for more researchers to participate online. Of course there is natural competition in terms of authors and publications, but I feel there is benefit to demonstrating relationships of mutual respect and support online.
As I am creating social media posts for the Journal of Pain and Symptom Management, it is VERY difficult to find the authors on Twitter to tag them and help promote their work. In a later post focusing on researchers and research organizations, I will share why we need to remedy this absence from the digital public square.
Of the 14 Twitter accounts, 5 have posted less than 30 tweets over the past 90 days. So if they are not that active, will you get that much from following them? Probably not. But it does not cost anything to follow them and maybe this post getting them a lot of new followers may reinvigorate their work.
For all 3 platforms I would propose that the journals consider using a unifying hashtag. #hapc (hospice and palliative care) is a natural one as it already has a built in audience that would be interested in the content and is short on characters. I have flirted with #hapcResearch but I am not confident that it needs a separate hashtag on Twitter. Yet, #hapc may not be enough, since on on Facebook and Instagram #hapc is not well defined, often cross-populated with lots of irrelevant content. So maybe #hapcResearch is a good one to bridge across all three platforms. The journal social media editors need to hash this one out.
I’m not quite sure what qualifies as a palliative care journal. I included JAGS mostly because they have some very relevant research to the field of hospice and palliative care, and their social media editor is Eric Widera of GeriPal, so a natural overlap there. It also serves as a good benchmark. Additionally I have included the Cochrane Pain, Palliative and Supportive Care Review Group. Is Cochrane a journal? Kind of. Should they be classified as a research group instead? Maybe. I need to probably ask them how they see they fit best.
There are two journals that have palliative care in the title but I have chosen not to list them, because they may be associated with predatory publishers. I keep track of them to see how they operate, and use them as a benchmark since I am not actively promoting them by including them in the rankings above.
Well I hope you enjoy this glimpse into the social media stats of palliative care journals. I have some more thoughts, some calculations and stats, I am waiting to gather some more data on before I share them widely. If you do have a moment, please go follow @JPSMjournal on Twitter and Facebook! If you are interested in helping with these stats, writing a paper or learning how to do social media for a journal, I would be happy to hear from you.
For more Pallimed posts about social media.
For more Pallimed posts by Dr. Sinclair click here.
Christian Sinclair, MD, FAAHPM, is a associate professor of palliative medicine at the Univeristy of Kansas Health System. He is editor-in-chief of Pallimed, and cannot wait to play board games in person again.
Monday, January 18, 2021
Monday, March 18, 2019
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!
So now it is time to vote for the Tweet of the Conference among each of the previous day winners. Anyone can vote, you did not need to attend the conference.
— Pallimed (@Pallimed) March 18, 2019
Voting is open for 1 week!
#hpm19 #PalliativeCare #hospice #hpm #hpmTOTD
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
Tuesday, January 1, 2019
Hey #medtwitter, I'm toying with the idea of starting a narrative medicine twitter chat. each week we discuss a poem, essay, short story (something very brief!) relevant to medicine and our experience. Would folks be interested? Would you participate? Does this already exist?
— Colleen Farrell, MD (@colleenmfarrell) December 16, 2018
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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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.
Announcing the readings for our very first #medhum chat! Jan 2, 9pm EST
— Medical Humanities Chat (@medhumchat) December 31, 2018
“Practicing Medicine Can Be Grimm Work” by Valerie Gribben https://t.co/yZzqhcI9c3
and
“Intensive Care” by Jane O. Waynehttps://t.co/aIyk6zUo39 pic.twitter.com/GRDs28xUmq
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
Monday, August 27, 2018
by Christian Sinclair (@ctsinclair)
We are prognosticating beings. It is how we survive. Many everyday decisions begin with an estimation of likely future outcomes. If my first clinic appointment is at 9:15am, and my drive from the hospital to the clinic usually takes 25 minutes, then I need to leave by 8:50am at the latest to give myself time to spare for bad traffic light timing, lack of a good parking spot or some other problem that may delay my arrival. I make my estimates, and go with the safest choice. I could go with my gut and my experience or I could use Waze, an app where I can select where I am leaving from, where I am going and what time I want to arrive by and it will tell me the best time to go based on a much bigger data set from drivers on the roads at that moment. Not only that, I could also use Waze to send an updated map to the clinic team to let them know when I will be there, so they can plan ahead as well.
But when it comes to medicine, we often deal with prognosis of many different outcomes, but we rarely use data and technology (evidence) and we rarely share this information clearly with others (documentation.) I recently finished the chapter on Prognostication for the new edition of the Oxford Textbook of Palliative Medicine, so prognosis has been on my mind a lot. One key article stuck with me and made me reflect on my practice of documenting evidence-based prognosis. Andrew Bruggeman and his colleagues at UC San Diego reviewed 412 inpatient palliative care notes for oncology patients and only 5 contained documentation of evidence-based prognostication. The validated tools used included the MELD score, the Walter Index, and the Lee Index. They looked for the Palliative Prognostic Score and the Palliative Prognostic Index as well but never found either of those documented.
First of all, I want to say kudos for publishing this research that basically says at their own institution a potentially critical part of a good palliative care note is missing. They are in good company thought because from my discussions with colleagues around the country I have not heard anyone else doing this on a consistent basis. At the organizations where I have and currently work, we do document prognosis but the note template and the EMR are not designed to easily include any particular evidence-based tool. This is consistent with other research of palliative care notes which showed 72% of notes contain survival estimates.
Secondly, we are entering a new age where machine learning and big data are crunching numbers and relationships with more power and speed then our simplistic point-based prognostic tools are capable of. But the output of these tools has not been widely tested, and how they construct their findings can be pretty enigmatic and not inherently logical to clinicians. These new black box prognostic machines may help us identify patients who may benefit most from palliative care, but I think we have not quite dealt with the ethical ramifications of what improved prognostic accuracy means for our clinical work and how it is delivered at scale.
We are barely starting to make evidence-based prognostication part of our clinical work and there are strong forces already at play using potentially more accurate tools that we don’t comprehend. This will be an important part of not only palliative care and hospice delivery, but health care delivery, health care reform, and even the overall insurance-based payment structure. We need clinician eyes, ears, and voices involved with the advances in prognostic science, and it begins with all of us being willing to use the tools we currently have and include them in our daily work.
If you are interested in this topic, I will be hosting a conversation about prognostication at the #hpm chat on Twitter Wednesday, August 29nd, 2018 at 9pET / 6p PT.
Christian Sinclair is the co-founder of #hpm chat and Editor-In-Chief of Pallimed. He leads the outpatient palliative care oncology clinics at the University of Kansas Health System. When he is not thinking about predicting the future, he can be found watching the Back to the Future trilogy looking for plot inconsistencies. You can find him on Twitter at @ctsinclair.
References
1: Bruggeman AR, Heavey SF, Ma JD, Revta C, Roeland EJ. Lack of documentation of evidence-based prognostication in cancer patients by inpatient palliative care consultants. J Palliat Med. 2015 Apr;18(4):382-5. doi: 10.1089/jpm.2014.0331. Epub 2015 Jan 21. PubMed PMID: 25608220.
2: Zibelman M, Xiang Q, Muchka S, Nickoloff S, Marks S. Assessing prognostic documentation and accuracy among palliative care clinicians. J Palliat Med. 2014 May;17(5):521-6. doi: 10.1089/jpm.2013.0454. Epub 2014 Apr 10. PubMed PMID:24720384.
Monday, August 27, 2018
Sunday, April 22, 2018
Join the #hpm Tweet Chat This Week in a Research Initiative with the Brain Cancer Quality of Life Collaborative
The Pallimed community is invited to participate in the #hpm Tweet Chat this week which help inform and shape a comparative effectiveness research proposal being designed by the Brain Cancer Quality of Life Collaborative, an initiative led by a team of patients, care partners, advocates, neuro-oncologists, and palliative care professionals.
The #hpm Tweet Chat is this Wednesday, April 25th, 6-7p PST/9-10p ET.
Topics for the chat are available here, in the #hpm chat’s blog post, How might we introduce palliative care to people with complex neurological conditions, by Liz Salmi and Bethany Kwan, PhD, MSPH.
In October 2017, the Collaborative was awarded $50,000 from the Patient-Centered Outcomes Research Institute (PCORI), to drive improvements in palliative care experiences for patients with brain cancer and their families.
With the belief that families want to spend time building memories, not navigating the healthcare system, topics for the #hpm chat week were shaped by Bethany Kwan, PhD, MSPH, and Liz Salmi.
Bethany Kwan, PhD, MSPH, is a social psychologist and health services researcher at the University of Colorado School of Medicine and a daughter and care partner of a person who had glioblastoma. Liz Salmi is a communications professional with expertise in design, community organizing and digital communications. Liz has been living with grade II astrocytoma since 2008, blogs at TheLizArmy.com and when she isn’t talking about brain cancer, she’s working on OpenNotes, an international movement focused on making health care more transparent.
Here is a Twitter list of the leaders in the Brain Cancer Quality of Life Collaborative and a photo below.
Join #hpm chat this week! We're discussing #palliative care for people with complex neurological conditions as a part of a #research initiative! #btsm All are welcome to join! Wed April 25th, 6p PST/9p ET, learn more: https://t.co/afvy37Qo0X pic.twitter.com/bQRGts8eAa— HPM Chat (@hpmchat) April 22, 2018
Sunday, April 22, 2018
Monday, March 12, 2018
The Annual Assembly of AAHPM and HPNA is this week and if you are going to Boston, 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 first year ever we have Twitter contests.
The official hashtag of the conference: #hpm18 (works on Twitter, Facebook, Instagram), use it in every tweet this week! (Are you wondering why the hashtag for our interprofessional field/assembly is #hpm and not #hpc? Read more here.)
Pallimed Network Accounts
- Twitter (@pallimed) - run by Allie Shukraft, Kristi Newport and Christian Sinclair during the conference
- Twitter (@hpmchat) - run by Lori Ruder and Ashley Deringer during the conference
- Facebook - run by Megan Mooney-Sipe and our volunteer team
- Facebook event page (#HPMparty) - Team effort with GeriPal
- Instagram (@pallimedblog) - run by Christian Sinclair, with behind-the-scenes looks using Instagram Stories
- Website
American Academy of Hospice and Palliative Medicine:
- Twitter (@AAHPM)
- Facebook Event page
- Instagram (@AAHPM)
- Website
- CONNECT Forum
- Temporarily change your Facebook Profile to have a #hpm18 frame
Social Work Hospice and Palliative Care Network (Not part of the Assembly, but having a conference right before)
Monday, March 12, 2018
Monday, August 28, 2017
One of my first memories from medical school is of my anatomy professor lecturing us on the role and responsibility of the physician as teacher: “the word doctor comes from the Latin word docere, meaning to teach”. I hadn’t considered that when I applied to medical school, and at that point in my education had never imagined myself as a teacher. As I progressed through my training, however, I came to realize that the act of teaching was not only satisfying but was, in fact, one of the best ways for me to learn. I served as a chief resident for my internal medicine residency program and found that more than anything it was a teaching fellowship, and I loved the experience of facilitating morning report and the one on one mentoring of younger residents.
Meredith MacMartin is a palliative care physician at Dartmouth-Hitchcock Medical Center in Lebanon, NH.
Monday, August 28, 2017
Wednesday, July 26, 2017
by Christian Sinclair
Politics and healthcare are occupying much of the news cycle this summer with all of the discussions around the possible repeal of the Affordable Care Act (AKA Obamacare). On one hand it can viewed as must-see reality TV with all of the drama and back and forth arguments with passionate opposition. Late-night TV hosts help turn the drama into satire and give everyone a good laugh and some entertainment. Yet it is important to see that this will greatly impact the care of the patients we see every day.
To be honest, it was not until a few years ago that I started to see the power of getting more politically involved as a physician. . I thought that dutifully voting was doing my part as a citizen. Nowhere in my education was it ever modeled for me that I should use my training and experience as a doctor to help influence public policy. Talking to legislators? I don’t have enough time. I’m a busy doctor. Emailing legislators? They probably hear from other people. Reading up on the pros and cons of new legislation and how it may impact me as physician? That is why I pay dues to professional societies and their lobbyists.
A few years ago, I got the chance to go to a Hill Day with the American Academy of Hospice and Palliative Medicine. The morning started off great with legislators and their staffers coming to tell us about the importance of the public voice in a thriving democracy. It was just like being back in High School in American History class with Mr. Horvath! We were given our assignments for the afternoon to walk around Capitol Hill and meet our Representatives and Senators and tell them why we supported the Palliative Care and Hospice Education and Training Act (PCHETA).
Sitting in Senator Roberts office, I waited with my advocacy team. We struck up a conversation with the other people waiting to visit the Senator. They were from the United Motorcoach Association and mentioned in the course of our small talk they had been here before. I was bewildered. What important policy issues could the United Motorcoach Association have to talk about? Were they more important than the care of hospice and palliative care patients? But then it hit me. They have every right to be here, to advocate for their interests, to represent their story. And if they were here telling their story and I didn’t show up today, Senator Roberts would have no knowledge of what I care deeply about. If we don’t show up and tell our story, then no one is going to care enough to reach out to us to find out more information and therefore other policy priorities will be advanced long before ours.
So knowing that physicians vote less often than the general population (and even less often than lawyers), how politically involved should we get on behalf of our profession and more importantly on behalf of our patients? This will be the topic of the July 2017 #hpm Tweetchat too so if you want to join the conversation, get on Twitter at 9p ET on July 26th. You can also add your comments below.
Christian Sinclair (@ctsinclair) is a palliative care doctor at the University of Kansas Health System, and immediate past president of the American Academy of Hospice and Palliative Medicine. He writes for Pallimed when he doesn't have other deadlines impending.
Wednesday, July 26, 2017
Monday, February 20, 2017
by Christian Sinclair
The Annual Assembly of AAHPM and HPNA is right around the corner and if you are going to Phoenix, 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 first year ever we have Twitter contests.
The official hashtag of the conference: #hpm17 (works on Twitter, Facebook, Instagram), use it in every tweet this week! To make it easy to include the hashtag in every Tweet, you can sign in to Tweetchat.com or tchat.io on your tablet or desktop. (Are you wondering why the hashtag for our interprofessional field/assembly is #hpm and not #hpc? Read more here.)
Pallimed Network Accounts
- Twitter (@pallimed) - run by Allie Shukraft, Kristi Newport and Christian Sinclair during the conference
- Twitter (@hpmchat) - run by Lori Ruder and Ashley Deringer during the conference
- Facebook - run by Megan Mooney-Sipe
- Facebook event page (unofficial) - Team effort
- Facebook event page (#HPMparty) - Team effort with GeriPal
- Instagram (@pallimedblog) - run by Christian Sinclair, with behind-the-scenes looks using Instagram Stories
- Website
American Academy of Hospice and Palliative Medicine:
Hospice and Palliative Nurses Association:
Social Work Hospice and Palliative Care Network (Not part of the Assembly, but having a conference right before)
Monday, February 20, 2017
Saturday, January 28, 2017
(Join up with other Pallimed readers going to the Annual Assembly on the Facebook Events page.)
In less than a month, more than 3,000 nurses, physicians, and others will be gathering in Phoenix, AZ to attend The Annual Assembly of Hospice and Palliative Care (PDF Brochure here).The Assembly returns to Phoenix for the first time since the 2004 meeting, which also happened to be my first Annual Assembly. The 2004 meeting was held in a small resort (Tapatio Cliffs!) a little north of Phoenix. This year we are in the main convention center because it has grown so much over the years.
This year's Annual Assembly is special to me for another reason...I'm actually the president of the American Academy of Hospice and Palliative Medicine (AAHPM). In 2004, I realized the importance of the Academy, and the strength of this conference. The people I met in the Professionals-In-Training Special Interest Group, the quality of the talks, the accepting and kind nature of the leaders and speakers...all of it made me certain of my career choice and my desire to serve the field.
As the staff of the Academy and HPNA put in their many hours to help pull this off in the weeks running up to the Assembly, I want to pause a moment to thank them. If you talk to them before the conference or see any staff there, please make sure to show your appreciation. Seeing things from behind the scenes makes me so respectful of the challenges they face and the miracles they pull off.
In the next few days, I will highlight what I'm excited about and would love to hear from you what you are ready to see. Today will be an overview of the whole conference and new (or overlooked) things that I think people should try to check out. In later posts, I will take each day and break down some of the highlights.
As president, I will only be able to go to some of the talks, as there are other meetings happening all through the conference that I need to attend, so I am looking to all of you to help me know how things turned out. Plus, we are looking for Pallimed correspondents who can summarize their experience with teaching points to share with our readers soon after the conference.
The Big Talks
The talks that lead off each day are called plenaries (singular, plenary). I will be honest...it took me a few years to figure out what the heck a plenary was. So I did find it funny/helpful that there is a box describing what the different types of sessions are in the main conference brochure.
On Wednesday night we start off with an energizing experience with The Drum Cafe. Yeah, I know a bunch of you may be rolling your eyes imagining drum circles during your college days, and the apprehension of feeling awkward because you believe you have any rhythm. But there is something magical in the making of music together.
During residency, I was in a rock n' roll cover band called...wait for it...Failure 2 Thrive. It was made up of a bunch of pediatric specialists and me a future palliative care doc. I didn't pick the name! The music we played was not complex, but man did it feel great making music together. I'm sure any of you that have been in band or a choir, or maybe even theater know the feeling I am talking about. It doesn't have to be high art, but it feels really good. I'm confident The Drum Cafe will get us all feeling that good at the start of the Assembly.
Off course to end the Assembly we have the State of the Science, which always manages to combine quick analysis of landmark research, with plenty of humor. Nick Dionne-Odom and Cardinale Smith will lead this crowd-pleaser session again this year.
On Thursday morning, Theresa Brown is a palliative care nurse with a Ph.D. in English. You may have seen her in The New York Times or read her book The Shift. I have not read the book yet (just downloaded it though!), but she did an interview with Terry Gross on NPR's Fresh Air which I enjoyed, especially her advocacy for nursing.
On Friday, we have BJ Miller who has really rocketed to the spotlight since his 2015 TED talk. I first met BJ at the 2014 AAHPM Awards, when he was given the PDIA Community Leadership Award. I'm very glad to see his unique story making a larger impact. He will be joined by Paul Bennett, the CEO of the innovative design company OpenIDEO, which tackled 'Redesigning the End-of-Life Experience' in 2016.
Unique Experiences
First-timer receptions - If this will be your first time at The Annual Assembly, then make sure not to miss the special receptions for AAHPM and HPNA on Wednesday right before the Opening Reception. Many leaders in the field will be there to welcome you, and you will meet a lot of other people who are excited to be there.
Job Fair - Sure, you're happy in your current position, but the field is growing. Take a stroll through the job fair and see what places are hiring. It is always good to know your value to the larger market of in-demand hospice and palliative care professionals. It may help you negotiate for a better role or benefits in your current position.
Book Club - If you have never tried the Assembly book club, THIS IS THE YEAR to do it. The book is When Breath Becomes Air by Paul Kalanithi. You know the book you have been wanting to read, and maybe even bought, but have found it hard to pick up and read because you know that it will hit very close to home and you already know how it is going to end. READ IT. You will be better for it, and then come to the Book Club to discuss!
Service of Remembrance and Celebration - Oh! This session is so powerful every year. You really should go if you have not been before. 'But our team is meeting for dinner on Friday night', you say. Reschedule it. This service grounds me each time I go. I love how the staff is able to incorporate unique aspects of the city and culture where the conference is held.
#hpm17 on Twitter - Starting in 2009, the Annual Assembly has grown a strong presence on Twitter with people sharing key points from talks and building community with good conversation, memes and emojis. I've used it to take notes on talks that I haven't been able to make, and even to help me decide which talk might be the best to go to. I'm hoping we will have a new Twitter primer ready to go before the conference.
And yes the Pallimed/GeriPal party is happening. details are still being hammered out. Announcements will be made on all Pallimed social media channels soon. Likely Thursday night.
Don't forget to join up with other Pallimed readers going to the Annual Assembly on the Facebook Events page.
Christian Sinclair, MD, FAAHPM is the editor of Pallimed, president of the AAHPM (for only three more weeks!), and a medical conference nerd.
Saturday, January 28, 2017
Thursday, December 15, 2016
As another year starts winding down, it is always a good reminder to take stock of what you value. After 319 weekly chats in 6.5 years, #hpm chat is going on our first ever hiatus. This was a hard decision for Meredith MacMartin and myself, the two lead co-moderators. We have had numerous conversations about the sustainability of weekly #hpm chats going into 2017 with only two co-moderators. There is a lot of work that goes into developing weekly programming, making sure the hosts are ready, ensuring diverse topics and hosts, editing blog posts, and promoting the chat. And that is all before the chat gets going. So yes this is a lot of volunteer work, but…
We really love #hpm chat. And I know a lot of you love it too. It has been a great place to get inspired, learn about a new resource, become enlightened on a different way to look at a problem, and most of all to talk with friendship among #hpm chatters has been nothing short of amazing for the past six and a half years.
We really love #hpm chat. And I know that a lot of you love it too. It has provided professional and personal inspiration, access to new resources, different perspectives on problems we all face, and the opportunity to talk and build friendships with fellow #hpm chatters. That opportunity has been nothing short of amazing for the past six and a half years.
When the idea came up to do a weekly tweetchat around hospice and palliative medicine in 2010, Renee Berry and I were inspired by Dana Lewis and her #hcsm (Health Care in Social Media) chat on Sunday nights. At first, it was Renee and I leading nearly every chat all in an effort to teach clinicians about how to use Twitter, and to leverage this relatively new medium to educate the public about hospice and palliative care. Over time, more volunteers joined us as hosts and moderators as the community grew, and as
I do want to take a moment to recognize the other moderators that helped us over the years. A big thank you to Renee Berry, Alicia Bloom, Niamh Van Meines, Ashley Deringer and Meredith MacMartin. Our have been great partners and #hpm chat would not have had the impact without your countless hours of volunteer work and enthusiasm to spread the word about #hpm chat.
Meredith and I have some ideas on what we may want to do, but it may take some time to ramp up new co-moderators and set our new programming in a sustainable way for volunteers. We may be reaching out to some faithful chatters to get your take on the future of #hpm chat as well, so keep an eye out and follow the @hpmchat account on Twitter.
Christian Sinclair, MD, FAAHPM is the co-founder of #hpm chat and current co-moderator.
Thursday, December 15, 2016
Monday, October 24, 2016
According to the Caregiving in the US 2015 research report (PDF) conducted by the National Alliance for Caregiving (NAC) and American Association of Retired Persons (AARP), 43.5 million adults in the US have provided uncompensated care to an adult or a child in the past year. The same report found caregivers provide on average 24.4 hours per week of support to their family member. Spouses were found to provide on average 44.6 hours per week and almost 25% of caregivers provide 41 hours per week.
Caregivers refers to family members who provide ongoing continuous care, typically without any compensation, for those with serious health issues such as cancer. Family caregivers provide significant support to patients which includes but is not limited to physical, psychological, spiritual, and emotional support as well as communicating with health providers, treatment monitoring, administering drugs and medical treatments, and advocating for their loved ones (Caregiving in the U.S., 2015).
Caregiver distress results when caregivers have overwhelming demands and unmet needs, coupled with other stressors such as feeling isolated, feeling burdened, financial strains, negative emotions, and work loss. A positive correlation has been reported between cancer patients’ and their respective caregivers’ distress (Hodges, Humphries, Macfarlane, 2005). Caregivers are at risk in developing both depression and anxiety as well as consequences to their own health (Nipp, El-Jawahri, Fishbein, et al., 2016; Palos, Mendoza, Liao, et al., 2011). Caregiver distress is associated with: being female, younger age, being the spouse of patients, lower social economic status, employed, and lacking personal and social support (Kim, Given, 2008).
In the spirit of family centered care, recent attention has focused on directly identifying and providing support for caregivers in addition to patients as part of standard care. Palliative care professionals have improved symptom management and quality of life for patients and have intuitively included patient’s families and caregivers. Palliative care has been associated with improved caregiver well-being, family satisfaction, and physical and psychological symptom management for patients and caregivers. Early palliative care with newly diagnosed lung and GI cancers showed improved depression and quality of life in caregivers (El-Jawahri, Jackson, Greer, et. al., 2016).
T1: Do your respective organizations currently either formally or informally assess for caregiver distress? If so, what is the process and what tools do you use if any?
T2: What services or resources are offered for caregivers at your respective organizations?
T3: What are some barriers for providing intervention and support for caregivers in your respective organizations?
What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 10/26/2016 - 9p ET/ 6p PT
Host: Sujin Ann-Yi, PhD @sujinannyi
Follow @hpmchat and go to www.hpmchat.org for up to date info.
If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org
For more on past tweetchats, see our archive here.
Sujin Ann-Yi, LMFT, PhD is a palliative clinical psychologist from MD Anderson Cancer Center and is hosting her first #hpm chat.
References
Caregiving in the U.S. 2015 (2015). Retrieved from The National Alliance for Caregiving and the AARP Public Policy Institute websites
http://www.caregiving.org/caregiving2015/
http://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf
El-Jawahri, A., Jackson, V.A., Greer, J.A., Pirl, W.F., Park, E.R., Back, A., Muzikansky,A., Kamdar, M., Rinadldi, S., Jacobson, J., Fishbein, J., Eusebio, J., VanDusen, H., Nipp, R.D., Ryan, D.P., Temel, J.S. (2016). Effect of early integrated palliative care on family caregivers outcomes for patients with gastrointestinal and lung cancer. Journal of Clinical Oncology, 2016 Palliative Care in Oncology Symposium, 34, 234.
Hodges, L. J., Humphris, G.M., Macfarlane, G. (2005). A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Social Science & Medicine, 60, 1-12.
Kim, Y. and Given, B.A. (2008). Quality of life of family caregivers of cancer survivors. Cancer, 112, 2556-2568.
Nipp, R.D., El-Jawahri, A., Fishbein, J.N., Gallagher, E.R., Stagl, J.M., Park, E.R., Jackson, V.A., Pirl, W.F., Greer, J.A.,Temel, J.S. (2016). Factors associated with depression and anxiety symptoms in family caregivers of patients with incurable cancer. Annals of Oncology, 27, 1607-1612.
Palos, G.R., Mendoza, T.R., Liao, K.P., Anderson, K.O., Garcia-Gonzalez, A., Hahn, K., Nazario, A., Ramondetta, L.M., Valero, V., Lynch, G.R., Jibaja-Weiss, M.L., Cleeland, C.S. (2011).Caregiver symptom burden: the risk of caring for an underserviced patient with advanced cancer. Cancer, 117, 1070-1079.
Monday, October 24, 2016
Wednesday, October 12, 2016
by Beth Fahlberg PhD, RN, CHPN and Robert Toomey, EdD, MA
Leaders are needed in palliative care who can provide the direction for current and future development. We recently wrote an article on Servant Leadership as a model for emerging Nurse leaders, which got us thinking about how Servant Leadership is a model that is also fitting for palliative care. There are many different models of leadership, yet the Servant Leadership model is particularly appropriate for palliative care.
Characteristics of servant leaders include: the ability to listen, empathy, healing, stewardship, commitment to the growth of others, and being skilled at building community.(1,2)
We recognize these characteristics in ourselves, and in the leaders who have shaped the field of Palliative Care. And while great strides have been made in advancing palliative care, as the IOM report states, there is much more work to be done “to achieve compassionate, affordable, sustainable, and effective care for all Americans”.(3)
These recommendations will not become reality without a concerted effort around palliative care leadership development. As stated in the ELNEC curriculum, “transformational leadership is critical to the development and innovation of palliative care.”(4)
Leadership is something that can be learned. It requires time, attention and mentorship. It is best developed when we have a conceptual model to guide us, such as Servant Leadership.
What is Servant Leadership?
Servant Leadership is a specific leadership philosophy and practice that, in short, is about serving first, then out of a serving approach, choosing to lead. Robert Greenleaf, former AT&T executive, coined the phrase ‘Servant Leadership’ in 1970 although this type of leadership has been around much longer than that.5 Some servant-leaders are people who are not well-known (can you think of quiet servant-leaders around you?). However, there are many other well-known servant-leaders. These include Jesus, Abraham Lincoln, Gandhi, Mother Teresa, Eleanor Roosevelt, Nelson Mandela and the Dalai Lama.
In palliative care, we see leaders emerging as they step up to meet needs. Soon, others follow and they find themselves in both formal and informal leadership positions. Rather than leading for power or recognition, they are leading to make a difference, so that those who are most vulnerable will get the care and support that is needed. This is Servant Leadership.
The study and practice of Servant Leadership is particularly well-suited to those who are emerging as new leaders, as the Servant Leadership Model provides a framework for their leadership development. At the same time, it can help those who have been leaders to become more effective and relevant.
Greenleaf who described the ‘best test’ of Servant Leadership in the following way:
- ‘Do those served grow as persons?
- Do they, while being served, become healthier, wiser, freer, more autonomous, more likely themselves to become servants?
- And, what is the effect on the least privileged in society?’ (Greenleaf 1970/1977, emphasis original)
We should encourage and nurture that desire to serve, and find ways to connect these new leaders with the mentors, resources and support to foster their growth. It is particularly important to help them when it gets tough, as the palliative care landscape is fraught with the potential for controversy, ethical dilemmas, moral distress and compassion fatigue. In addition, those skilled in palliative care often find themselves advocating in challenging situations involving their own families and friends. In light of these threats to palliative care leadership, emerging leaders need to be supported as they learn to respond to these challenges constructively, professionally and ethically, while caring for and receiving care for their own needs.
Each one of us can lead in our own spheres of influence, using our expertise, talents, resources and networks. Our growth and potential as leaders will be more effective if we:
- Recognize what we do as leadership
- Are mindful and reflective as we lead
- Thoughtfully study leaders around us
- Connect with effective leaders who can mentor us
- Mentor emerging leaders, encouraging them to then mentor others
Here are 5 ways to intentionally integrate Servant Leadership into your own work in palliative care: (1,6)
- Develop and communicate your vision for palliative care, to inspire, motivate and engage others.
- Listen and learn from those you are leading, so that you can address their needs, values and priorities, just as we do with patients and their families.
- Invest in others’ growth and development
- Give your power to others, but continue to have their backs.
- Cultivate community through strategic relationships, collaboration, hard work and celebration.
We welcome your thoughts about this in the upcoming #HPM tweetchat on Wednesday October 12, when we will discuss the following questions:
T1. What leadership models and practices have been used in palliative care? What has worked? What has backfired, and how?
T2. What does “serve” mean to you in the context of palliative care? Who do you serve and how? Can you think of an example when your serving turned into leading?
T3. Can you relate to the Servant leadership characteristics and practices? Do you think that this is already being implemented in palliative care? Where could this be implemented more effectively?
T4. Do you think Servant Leadership can be helpful in promoting palliative care leadership development?
References
- Fahlberg BB, Toomey R. Servant leadership : A model for emerging nurse leaders. Nurs 2016. 2016:49-52.
- Spears LC. Practicing servant-leadership. Lead to Lead. 2004;2004(34):7-12. doi:10.1002/ltl.94.
- Institute of Medicine. Dying in America Improving Quality and Honoring Individual Preferences Near the End of Life.; 2014. http://www.iom.edu/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx.
- End of Life Nursing Education Consortium. Advancing Leadership in Palliative Care Nursing. 2015.
- Greenleaf RK. SERVANT LEADERSHIP – A JOURNEY INTO THE NATURE OF LEGITIMATE POWER AND GREATNESS. New York: Paulist Press; 2002.
- Boone LW, Makhani S. Five necessary attitudes of a servant leader. Rev Bus. 2013:83-97. http://www.stjohns.edu/sites/default/files/documents/Tobin/vol33-num1-winter_2012-2013.pdf#page=85.
Follow @hpmchat and go to www.hpmchat.org for up to date info.
If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org
For more on past tweetchats, see our archive here.
Beth Fahlberg PhD, RN, CHPN, @bethfahlberg, is the program director for Palliative Care @ UW-Madison Continuing Studies, developing and teaching innovative primary palliative care education for healthcare professionals and Her healthcare expertise includes aging and chronic, advanced, and serious illness, with a specific focus on heart failure palliative care. She has used the servant leadership model for over 20 years to guide her own leadership development, and incorporates it in her palliative care continuing education programs.
Robert Toomey, EdD; MA (Servant Leadership), @sunsetweet, directs programs in leadership and management at the University of Wisconsin-Madison, Division of Continuing Studies. He created and directs the Servant Leadership Certificate, a 5-day noncredit professional development program. His doctoral dissertation was about leadership, leader development, and learning environments. Robert and Beth will be collaborating in Spring 2017 to develop and teach a new blended learning continuing education course called Applied Servant Leadership in Nursing and Healthcare. Facebook page: https://www.facebook.com/UWMadCSLMW.
Wednesday, October 12, 2016
