Tweet

by Christian Sinclair (@ctsinclair)

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 10^th 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.

Tweet

by Drew Rosielle (@drosielle)

A few months ago an interesting olanzapine study was published which I have been meaning to write a post about. It's important because while olanzapine has really established itself in the last decade as a highly effective antiemetic for chemotherapy induced nausea and vomiting, and is now in multiple CINV guidelines (eg Antiemetics: ASCO Guideline), etc, we don't have a lot of data for its efficacy for nausea outside of CINV, and so a well-done RCT is welcome.

The study is a multi-center, US, adult, randomized, placebo-controlled, double-blind trial of olanzapine for nausea in advanced cancer patients who are not receiving chemo. (Small note: the abstract says 'double-line' instead of 'double-blind,' and as someone who does my best to edit typos from my and others' work all the time, it is just interesting and kind of quaint to see such a typo in a JAMA journal. I actually tried to figure out if 'double-line' is some novel trial design I had missed but I'm pretty sure it is not.) While well-done, it is a small study and is described as a pilot study by the investigators.

Patients (n=30, ~45% Black American and the rest mostly white, mean age ~60 years, broad spectrum of solid tumors represented, most were on either/both metoclopramide/ondansetron at baseline) had to have chronic nausea for at least a week rated >3 on a 0-10 scale, not be on chemo for at least 2 weeks (for the most part CINV is defined as chemo on days 0-5 of chemotherapy), and not be on 'antipsychotics' otherwise (to be clear, they allowed use of common neuroleptic antiemetics like prochlorperazine and metoclopramide but presumably these folks weren't on quetiapine, risperidone, etc & if you were wondering none of them were on haloperidol at baseline).

Patients were randomized to placebo or 5mg olanzapine orally, daily, for 7 days. Patients filled out simple, daily, self-reported 0-10 symptom scales looking at nausea, but also appetite, fatigue, sedation, and pain; as well as vomiting episodes and global well-being.

Primary outcome was change in nausea scores from baseline to day 7.

The results were ridiculous, as you can see by the Figures. The authors couldn't say that in print of course, so instead they noted, 'No other drug studied in this situation has been reported to decrease nausea/vomiting more than what was observed in this study.'



Nausea went from a baseline of 9/10 to 1/10 in the olanzapine arm and was unchanged in placebo arm. Emesis episodes went from 2 a day to zero in the active group, 3 to 2 a day in the placebo arm. Self-reported appetite improved from 1/10 to 7/10 for olanzapine, 1/10 to 2/10 for placebo. Given all this it won't be surprising to hear that global well-being improved in the olanzapine group as well, more than placebo.

My biggest challenge with olanzapine is its sedating/fatiguing effects and at least in this group on this relatively low dose of olanzapine, those toxicities weren't evident in their findings, and in fact self-reported fatigue improved in the olanzapine group vs placebo.

They noted that after the 7 days the patients could enter open label observation and all the olanzapine patients chose to stick with it.

So, wow. My guess is most who prescirbe olanzapine regularly aren't surprised that it is effective outside of CINV. Like many other antiemetics, it seems to have broad antiemetic efficacy. The magnitude of the effects though are what's really impressive and while I have zero doubt olanzapine is more effective than placebo for nausea in these patients, I think we'll need larger studies before we can make firmer conclusions about the 'actual' magnitude of benefit. That is, it may see get attenuated with larger trials, but I'd be surprised if it's more than a modest attenuation.

This is not the final word on olanzapine of course, like with everything else in medicine we would greatly benefit from comparative efficacy studies. Given how my clinical practice works, in that I don't prescribe more than one dopamine blocker at a time (eg both olanzapine + prochlorperazine or metoclopramide), comparative studies between those agents would be particularly welcomed (with metoclopramide we have comparative data for CINV with olanzapine, but not elsewhere). Especially given the relative expense, it would be helpful to know whether we should even be using prochlorperazine as a first-line agent anymore.

Basically what I'm saying is olanzapine is arguably in the running to become of our first-line dopamine antagonist antiemetic in palliative care, I think that's a reasonable possibility, and one that could be answered with additional investigation which I hope trickles out in the coming years. Please don't send me angry @'s on Twitter, I'm not saying olanzapine *is* currently first-line, more that at this point I wouldn't be surprised if we landed there in the coming decade.

A global aside about olanzapine. Why is it so good? My theory around olanzapine's efficacy, which I don't think is a profound one, but one I'll state publicly anyway, is that besides stopping a lot of patients from puking, it has significant, welcome, 'additional' effects which make many of our patients globally feel better, effects that many of our other common antiemetics eg ondansetron/prochlorperazine don't really have. By additional effects I'm talking about mood effects, anxiolysis, maybe a little mood elevation, etc. Olanzapine's impacts on those in addition its chemoreceptor trigger zone action is why it helps our patients so profoundly in a way many other of its peers just don't.

A final digression about appetite. This is not proof that olanzapine is an effective treatment for cancer related weight loss/cachexia syndrome. Nothing that I know of has been clearly demonstrated to be effective for that (apart from effectively controlling the underlying cancer). However I've long wondered whether we've missed the boat on drug investigation for cancer cachexia (which is super-complicated, with multiple interacting causes in any patient, and just not something that's amenable to being 'fixed' with a pill, or any other monotherapy like vaporizing high THC cannabis, etc), by ignoring the opportunity to study orexigens as essentially palliative therapies for the 'distress of low appetite'. Eg, I have a lot of patients who take orexigens and 'like them,' say they feel better on them, appreciate the fact that they feel hungrier, participate more in the social aspects of eating, etc, but who's actual weight loss/cachexia is not improved by them. Ie, I think there is a relatively understudied potential for some of these drugs as palliative agents for anorexia, as opposed to disease-modifying agents for cachexia.
For more Pallimed posts about nausea.
For more Pallimed posts by Dr. Rosielle 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.

Tweet

by Lyle Fettig (@FettigLyle)

I’ve been thinking about my role as a physician in responding to skepticism about a range of COVID topics, especially as we approach the holidays and all the tension about difficult recommendations to forgo traditional Thanksgiving dinners. As I think about our current situation, I can’t help but recall an encounter I had with a patient many years ago.

In winter 2008 after President Obama was first elected, I saw a woman in clinic who said she was disappointed by the election result. She cited a jaw dropping falsehood about what she thought his election would mean for healthcare, and especially healthcare for white people. I was frankly shocked when she mentioned falsehood, as I had not heard her specific concern in the runup to the election. She had no history of psychosis or delusional thinking. We spent a while talking about her concerns, and why her healthcare was secure.

I remember thinking, "where did she get this from and how could she believe this?" The belief clearly had a racist element underpinning it. I felt powerless, as I couldn’t fix this person’s belief. But through a mixture of trust built on our relationship and exploring her underlying concerns, I think she ultimately listened to my reassurance that she would not lose her Medicare. And regardless of what she believed, it ultimately didn’t matter. The truth was the truth. Her Medicare coverage wasn’t changing, and this truth would bear out for her regardless of her belief.

Don't we have moments like this all the time, when patients bring up shocking beliefs/myths/etc about how the world works? Maybe not every day, but it happens a lot. People are not always well informed and have a mix of beliefs, born out of individual experiences, family background, and culture. “Groupthink” is a part of that culture.

When people bring up myths about their illness or healthcare itself, we usually deal with it one on one with the patient. We explore underlying concerns and try to address those concerns as best we can, either through communication or action.

Dr. Fauci said he was "stunned" that so many see the pandemic as "fake." I've also heard colleagues express disbelief about how lackadaisical many in the public are.

But if you've been practicing medicine for a while, haven't you had enough people individually bring up wild ideas about how the world works to say, "yeah, actually I'm not all that surprised." The piece that's hard is the group think, and that we have so little control over this groupthink, right here in front of us. So while I’m having a bit of disbelief, it isn't the main feeling I've been having. The main response is a bit of helplessness.

I feel helpless in the face of so many who aren't taking this seriously, and I'd guess many of you do, too. The only way forward for most of us is one patient at a time. Sure, those who have a megaphone should continue to blast accurate and understandable public health messages. It's really important. The rest of us can amplify these messages.

Just remember that you've been here before with patients' mistaken beliefs. One on one with patients and their families is where healthcare professionals have our greatest agency. We have the ability to understand explanatory models, motivations, and concerns.

None of us would dispute that public health oriented restrictions come with hardships for many. When patients (or loved ones) express skepticism about public health guidance, resist the inclination to reinforce what you know to be true. By now, they have heard it all before! Explore how following public health guidance might be impacting their life in other ways (social isolation, loss of income, etc). This is what the restrictions actually mean for most people. This is harder to accomplish on social media or with family and friends, but you could give it a try there, too.

Explore how they are talking about coronavirus and the restrictions with others around them. You'll hear about the groupthink. To go against the grain of one's in-group feels like a threat to their identity (even if the vast majority of the time, it isn’t a threat in that way). You will also hear a great deal about how families and friends are working together to overcome the conflicts that are inherent to trying to navigate these difficult times. Celebrate the work they are doing to do this when this happens! I’m definitely seeing this a fair amount in our palliative care clinic with our seriously ill patients and their families, who remain highly motivated to stay away from COVID. People have been very creative, having drive-by birthday celebrations at homes, etc.

IF you can figure out how public health guidance impacts a person in potentially negative ways, then you can acknowledge that (and sometimes work to mitigate with help of social workers, etc). And then they may be more open to hearing you speak the truth about prevention.

Don't expect them to change their mind instantly. Most of the impact of health care professional/patient communication comes after a visit, and they may never tell you that you helped change their mind. As with all other healthcare, "They don't care how much you know until they know how much you care." This maxim remains true with pandemic communication. If you’ve spoken your mind with compassion and respect, you’ve done your job, even if you can’t ultimately control what they do.

The pandemic has “stretched” my ability to separate what I can and can’t control. As we head into what looks like a dark winter, I hope we can all continue to find the light of our souls: Our ability to foster genuine human connection in the hardest of times.

P.S. Yes at the beginning of the pandemic I said we were going to war with coronavirus (see previous post). Do I regret it? Yes and no. If I didn’t sorta regret it, I probably wouldn’t be bringing it up right now, as I might be the only person who actually remembers this. I don’t like battle metaphors, I avoid them in practice unless patients bring them up. And I don’t want to be at war. So consider this post a bit of penance for “going there.” But I’ll admit to having mixed feelings about many different metaphors, even including battle metaphors. I think the downsides of battle metaphors mostly outweigh the upsides, but I can’t help to still think of it when it comes to the virus. So I’ll continue to wrestle with it, and accept non-violently any judgement silently cast by those who read my previous post. I get where you’re coming from, trust me. :)

Dr. Lyle Fettig is an Assistant Professor of Clinical Medicine in the Department of Medicine/Division of General Internal Medicine and Geriatrics. Dr. Fettig directs the IUSM Palliative Medicine Fellowship and works clinically with the Eskenazi Health Palliative Care Program.

Note - this post originated from a thread by Lyle Fettig on Twitter.

Tweet

by Drew Rosielle (@drosielle)

David Hui, Eduardo Bruera, and colleagues have published another important delirium trial out of MD Anderson which I thought was worth blogging about in detail.

In some ways it's related to the same group's RCT a few years ago of lorazepam added to haloperidol for agitation in hospitalized advanced cancer patients with delirium (showing the lorazepam quite effectively reduced agitation via presumably a sedating effect). As I pointed out in the Palllimed post about that trial, while they labeled their patient group as 'agitated delirium in advanced cancer', in essence it was really a sedation for terminal delirium trial as most patients only lived a few days, but a casual reader of the study might not realize that and think they were finding that lorazepam is a disease-modifying therapy for delirium. Which it is not, discrete exception aside (alcohol withdrawal?).

This is an important distinction, as I think there's been a sort of confusion over the years in our discussions about delirium and even research about it between disease-modifying therapy for delirium and essentially palliative-focused therapies to reduce distressing aspects of delirium (primarily agitation). Eg, a drug or drug combo or other intervention that reverses delirium / shortens delirium / returns normal cognition vs a therapy that reduces agitation (because while you could reduce agitation by 'fixing' the delirium you could also do it by sedating the patient). When and whom to just sedate is often complicated, but frankly less so in our patients who have 'terminal delirium' or 'agitation,' insofar as this implies the patient is imminently dying, it is not expected we can reverse the underlying cause of the delirium, and (most often) the goal is to prevent and mitigate suffering during the patient's final days, which in reality ends up meaning sedating the patient (not in a deep, continuous, so-called 'palliative sedation' way, but enough to quiet the distressing motor restlessness etc).

This is a long-winded way of expressing my appreciation for the investigators who, for this study, describe their goal as reducing terminal agitation in advanced cancer patients with delirium, and not treating delirium per se, which is much appreciated.

The trial: this is a single-center, double-blind, parallel-group RCT trial of hospitalized cancer patients at the MD Anderson palliative unit. Basic inclusion criteria were patients had to have a RASS score of 1 or more during the prior 24 h despite being on their group's standard, first-line delirium/agitation therapy which is scheduled + rescue haloperidol (which per their protocol could have been anywhere from 1-8 mg a day, but it's a little confusing and they also note that all the enrollees were put on 2 mg haloperidol q6h scheduled + 2 mg q1h prn before going onto the study drugs protocol). Subjects were randomized in a 1:1:1 fashion to haloperidol dose escalation, switching haloperidol to chlorpromazine, or additing chlorpromazine to haloperidol.

Interestingly, they didn't however clearly define the 'terminal' part of their goal of studying terminal agitation. For what it's worth, this is a study within a single institution's palliative unit, and they basically say that any patient getting to their unit in such a state is very likely to be 'terminal' and they left it at that.

They had a complicated double-dummy design using pre-made syringes of study-drugs/placebo, but essentially patients received one of:

- 2 mg haloperidol q4h scheduled + q1h prn
- 25 mg chlorpromazine q4h scheduled + q1h prn
- 1 mg haloperidol + 12.5 mg chlorpromazine q4h scheduled +q1h prn

If this was inadequate (RASS 2 or higher), doses were essentially doubled in a stepwise fashion. This Table from the Supplement outlines the protocol, it's a bit complicated.

Their primary outcome was the change in RASS at 24 hours. The secondary outcome was the proportion of patients with a RASS score of -2 to 0 at 24 h (basically, that was their goal, to keep patients between -2 which is 'lightly sedated,' and 0 on the RASS).

They randomized about 45 patients between the arms, mean age 63 years, 83% white, and all had a KPS of 30% or less.

There was no difference between groups regarding RASS reduction at 24h, or proportion of patients with a goal RASS at 24h. Most subjects' RASS scores went down about 3 levels (eg from 1 to -2), without differences between treatment arm at 24h.

Nearly all of the other secondary outcomes were the same between groups.

But, a couple of the secondary outcomes that did show differences did seem to favor rotation to chlorpromazine: fewer patients in the rotation to chlorpromazine needed rescue medication in the first 4 or 8 h after blinded drug/s were administered (big differences here, eg 19% in chlorpromazine vs 73% in the haloperidol escalation group at 4 h), and fewer in that group also needed a dose escalation. Ie, although the study wasn't really trying to determine this, their data are suggestive that in the chlorpromazine arm (25 mg q4h scheduled), patients "more rapidly" achieved the desired RASS state than the other arms. They got more comfortable appearing (more sedate) faster, and stayed there, compared to the other arms. I believe these were post hoc analyses, not prespecified secondary findings, so take them with a grain of salt, however the differences were quite marked, and I'm basically persuaded here. Chlorpromazine FTW!

Median survival was 48-72 h in all groups. No differences in side effects/harms between groups were evident.

Bottom line here: escalating haloperidol, rotating to chlorpromazine, or doing a little of both are equally helpful in getting terminally agitated patients more comfortable appearing at 24 h, but switching to chlorpromazine is probably the fastest method.

So, pretty good study. To me, it's an argument that I should be rapidly switching to chlorpromazine when I think death is imminent (days) and a few doses of haloperidol have not achieved much. There's a confusion of options out there, more haldol, chlorpromazine, other sedating neuroleptics (eg quetiapine which I kinda hate but is used all the bleeding time it seems [not by my team], and while this study obviously didn't look into all the options I'm in favor of really making chlorpromazine the drug of choice (when sedation is acceptable, the goal).


For more Pallimed posts about delirium.
For more Pallimed posts by Dr. Rosielle 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.

Tweet

by Christian Sinclair (@ctsinclair)

Patients and families across the US are about to get a close look under the hood of electronic health records in just a few weeks. Starting in November, the 21st Century CURES Act is putting in place the rules for patient access to their health records including the clinical notes of the clinicians. Your organization is possibly planning for this new access to be flicked on like a light switch in the inky dark of night. Some of you may be shocked and seeing this for the first time, some of you have seen glimmers, some of you are well prepared, and some have had your eyes long adjusted and are probably thinking, “What’s the big deal with patient access?”

Patient access to notes feels like it should be in our wheelhouse. It is about communication, patient-centeredness, and talking openly about hard truths. But understandably without much preparation, many palliative care and hospice clinicians are going to feel underprepared, which may cause a lot of anxiety. But there is hope! And time! Well, a little bit of time, but still time!*

If all of this is news to you, I would encourage you to first spend some time on the OpenNotes website - www.opennotes.org. The group started over a decade ago to help clinicians and patients navigate this potentially tricky territory so that both can benefit. It is not directly related to the CURES act nor responsible for the implementation. The OpenNotes site has great resources, tips, videos and links to research of what other specialties have been exploring like adolescent patients and confidentiality, mental health, and caregivers.

Second, if you are on Twitter, definitely follow friend of the blog, Liz Salmi (@TheLizArmy), and OpenNotes on your preferred social media platform (Twitter, Facebook, LinkedIn, YouTube)

Third, newly armed with some information, go talk with your colleagues at your organization and your leadership about what local resources and info you need to know. Do your note templates need to change? What will you be telling your patients and families to expect? How will your group handle sensitive information that you would not feel comfortable immediately sharing with patients and families? How will this impact your collaboration with other teams when you have conversations via your notes?

Fourth, now that you have thought about it and notified the people you work with, make time to attend some online Q and A sessions organized by the OpenNotes team. This Wednesday, October 21th from 5-8pm ET, there will be a live AMA (Ask Me Anything) on Reddit (r/medicine) with myself and a number of other colleagues who will be taking questions on the ins and outs of OpenNotes. Next week on October 29th 11a-Noon ET, I will be giving a Grand Rounds Webinar with the group at OpenNotes. It is free to register, and I hope someone from your group will take time to attend.

Lastly, If you have any tips, tricks, questions, please add them in the comments below. I will work hard over the next few weeks to stay on top and get them answered!

Now, let’s review your plan:
1 - Read the OpenNotes website for practical information and research.
2 - Go follow key people on Twitter who talk about patient access to notes.
3 - Talk to your colleagues at work and your leadership to prepare for patient access to notes.
4 - Register for the webinar and check in on the Reddit AMA.
5 - Leave tips, tricks and questions in the comments below.

Christian Sinclair, MD, FAAHPM, is a palliative care physician at the Univeristy of Kansas Health System working in outpatient palliative care and leading the research group there. When he is not fixing the order of the 'i' and the 'a' in the word pallaitive, he can be found coming up with unneccessary acronyms.

*And speaking of time, I do want to apologize for not banging the drum on this earlier and louder. I have been a fan of the work OpenNotes has done for a long time, and sharing my notes for the past few years. The CURES act was passed into law in late 2016. The final rule and timelines were finalized in Spring of 2020. I should have been much louder about this, but with COVID, it did not seem as critical until it got much closer, and now it is nearly here. So I am working to make amends!

Tweet

by Nathan Riley 

Tweet

by Michala Ritz and colleagues

In today’s current world of social isolation and virtual EVERYTHING, it is easy to get sucked down an endless rabbit hole of negativity, sad stories of sickness and death, and scary projections of the future. It is now normal to wake up, wonder about family and friends near and abroad, and monitor the volatile stock market – all while sipping our morning coffee worrying what bad news tomorrow may bring.

Those lingering questions keep us up at night, like monsters under our beds.

“What if I lose my job?”

“What if my parents contract COVID?”

“How will my patients do with all of this?”

“What if I accidentally spread the disease to someone I love?"

“Will life ever be “normal” again?”

Current alterations in daily life due to the coronavirus pandemic have put an enormous mental and emotional strain on countless people throughout the globe.¹ Anxiety and depression result from increasing physical and social isolation. There is such a focus on the negative; what activities we cannot do, what events we cannot attend, and what people we cannot see in person. Commonly, the end of the day becomes a time for reflection on the negative, as we replay the conversations, events, and thoughts that did not go well. What’s missing is a healthy dwelling on the good things, the happy moments that brought a quick smile to our faces and joy to our days.

Science and years of research have proven that grateful people are happier and healthier. Gratitude journaling helps people cope with stress and increases the positive emotions that they feel.² Dr. Martin Seligman has written extensively of the power of positive psychology, and specifically the benefits of gratitude journaling by writing down three positive events or feelings at the end of the day. In doing this, it “changes your focus from the things that go wrong in life, to the things you may take for granted that go well”.³ Gratitude journaling also creates a mentality that is more resilient to adversity and setbacks. Extended research has also shown that promoting resilience training for healthcare workers can lead to lower level of depression, anxiety and an increased overall life satisfaction.⁴

So, you are telling me, that in order to maintain happiness, healthiness and resiliency, I can reflect on my day and write down three good things that happened? Sounds simple enough. Sign me up! And, guess what, there’s an app for that.

We worked with a software solutions company called CrossComm to build a free, web-based (no download needed) gratitude journaling and sharing app called “The Three Good Things”. We particularly thought about colleagues in palliative care in its design, but also made the app usable for persons outside of healthcare, including our family and friends, patients, and their caregivers. Users of the app can journal privately, or create and invite their own family and friends to join a gratitude sharing network where nightly posts can be seen by those they care about. In doing so, we hope that positivity goes viral, starting from within your own social circles. Further, the app can send you a text or email reminder at the time of your choice to nudge a moment to reflect on the things that are going well.

Here are some examples from the latest rundown of publicly-posted “good things”, known in the app as the “Positivity Feed”.

“Cookie cake and grilled burgers”

“My wife and I are still in love. Like lots.”

“Playing Apples to Apples”

“One week in our new house”

“Cauliflower rice bowls”

“Walked a 5K”

“Thankful for my children”

Just because we have to be a little distant doesn’t mean we need to lose sight of the great lives we all live, the love we experience each day, and the kindness the world still has. We encourage you to take a quiet moment, reflect, and write down your three good things and smile!

The web app can be accessed here: https://the3goodthings.org/

Michala Ritz MPH

Fred Friedman

Jon Nicolla MBA

Don Shin

Arif Kamal MD, MBA, MHS

References

1. Siija, Li et al. The Impact of Covid-19 Epidemic Declaration on Psychological Consequences: A Study on Active Weibo Users. 2020.

2. Allen, S. Is Gratitude Good For Health. 2018.

3. Seligman, M, Steen T, Park N and Peterson, C. Positive psychology progress: empirical validation of interventions. Am Psychol 2005 July – August;60 (5):410 – 421

4. Peccoralo L, Mehta D, Schiller G, et al. The Health Benefits of Resilience. 2020. https://link.springer.com/chapter/10.1007/978-3-030-30892-6_13. 

Tweet

by Vickie Leff (@VickieLeff)

As a clinical social worker, I am often approached by my medical colleagues asking for support and a listening ear around difficult cases, understanding their own reactions, team dysfunction, and moral distress. In the middle of this COVID pandemic, Social Workers, Chaplains, Nurses, Physicians, Respiratory Therapists, Child Life Specialists, etc. are all likely experiencing an increase in moral distress. This is due to the necessary change of focus from “patient-centered” to “community -based” approach, and resource allocation issues such as PPE shortage, health inequities, visitation limitations.

A few years ago I wrote another article about Moral Distress. Things have changed since then, compounded by the pandemic. I would like to take a moment to focus on how we can manage these complicated, emotionally charged situations during this incredibly stressful time in which we are challenged about ability, time, strategies to deal with moral distress. Moral Distress challenges clinicians to speak out, work together, and tolerate ambivalence. We must embrace the discomfort in order to legitimize the occurrence and find solutions, especially during this pandemic, when the focus of providers can be easily pulled in many directions. 

“You have to do everything to keep her breathing,” the father of a 15 year old dying of a brain hemorrhage, said to me as the Palliative Care Social Worker. Hearing the panic and desperation in his voice while knowing she would not survive was distressing. Relaying the conversation to the bedside nurse and Resident amplified the distress, as they said what I was thinking: “There is no way she will survive, we have to take her off life support.” Calming myself to be able to have a discussion about the ethics of the situation was challenging, but critical. I worried about whether advocating on behalf of the father would be interpreted as, “the social worker doesn’t get it,” and wondered if they would respect my opinion.

How can we help each other when faced with cases that cause us moral distress? What can our institutions do in response? How can we work as a team to deal with these issues when they arise?

We can remind ourselves that “When addressing moral distress, the aim is not to eradicate the phenomenon but rather to mitigate its negative effects, including preventing caregivers from feeling unable to provide compassionate patient-centered care, feeling withdrawn, unable to return to work or continue in their profession.”

Evidence tells us there are many strategies that can help on the individual, team, and organizational level. It will take deliberate intention, institutional support, and commitment.

Individual Strategies:

Tweet

by Jared Rubenstein (@DrJRubenstein)

Caitlin Doughty is a mortician, funeral home owner, author, and activist who strives to instill more death positivity into our classically death-avoidant culture. Through her writing, website caitlindoughty.com, podcast and numerous YouTube videos she utilizes her signature voice and style to both educate and entertain. In her book, From Here To Eternity: Traveling the World to Find the Good Death, Ms. Doughty treats the author to a whirlwind tour of different cultural practices around death throughout the world. In equal parts travelogue and ethnography, the reader gets to experience eight different and unique cultural practices related to how we care for each other after death.

In the Tana Toraja region of Indonesia, there is an annual event where families exhume their mummified loved ones to spend time with them and care for their bodies. They talk to the corpses, bring them gifts, and change their clothes prior to ultimately returning the body to the family crypts at the end of the festival. One man reported, “For us, we are used to it, this kind of thing. This life and death.” In Tokyo, Japan, we are taken to the Ruriden columbarium, a high-tech Buddhist facility for storing cremated remains. A room with two thousand glowing Buddhas that line the walls floor to ceiling serves as a means for technology to facilitate the way in which people connect with their deceased. Using an electronic card, visitors are able to locate which glowing Buddha holds the remains on their loved one which then glows a different color to draw the visitor’s focus and allow connection. In Colorado, we get a glimpse of an open air pyre where cremations occur with the engagement of the local community

Ms. Doughty’s style is both alternately serious and light-hearted. She masterfully navigates discussions of the diverse cultures while at all times maintaining cultural humility. The sum is a fascinating look at eight different ways people in this world conceptualize death. Two themes that intertwine throughout the book are the commercialization of post-mortem care and the relative lack of involvement with processes related to death that is becoming more common in American culture. Ms. Doughty makes no secret of her feeling that both of these are negative adaptations in our culture and through juxtaposition with the other cultures shared in the book, makes a convincing case for the benefits of a more “death positive” culture.

I would wholeheartedly recommend this book for anyone who likes learning about different cultures of the world, particularly as they relate to death. Any fans of the book Stiff, by Mary Roach, will likely enjoy this book for its similar series of short vignettes as well as its somewhat lighthearted take on what is otherwise potentially heavy subject matter.

Through the palliative care lens, it’s easy to see how the gradual, but relentless, distancing of life and death in our American culture affects the work we do. Increasingly, death becomes something that happens to other people rather than an indivisible counterpoint to life. In caring for people grappling with their own mortality and that of their loved ones, having taboos surrounding death makes navigating end-of-life conversations even more challenging than they inherently are. I would imagine that if we could achieve the type of death positive culture that Ms. Doughty and others advocate, people may be able to view discussing their death as simply another means of discussing their life. In this way, we could more effectively navigate conversations about goals of care and advance care planning, using the idea of death as a means to frame what it means for someone to feel alive.

Jared Rubenstein, MD is a pediatric palliative care physician and medical educator at Texas Children's Hospital. You may know him from his animated videos on palliative care topics. Check them out here. 

Tweet

by Michelle Christopher @michellethedoc and Sonia Malhotra (@SoniaMKhunkhun)

The silence was palpable. Two of us continued to speak about our concerns about the way Black lives were treated and how important it was to address these concerns among us for the betterment of our patients. If we couldn’t understand this among colleagues, how would we ever understand what our patients, a predominantly Black population at a safety net hospital, went through?

- - - - - - - - - - - - -

As the COVID pandemic started and we saw the first surge of patients flood our hospitals, we watched our patients, colleagues and broader community come together to share stories and experiences. After asking patients how they were coping with the anxiety that social isolation and fear of infection brought, our patients would often thank us for holding space for them to speak on these challenging times. Each week, our colleagues would gather to share the high and low points of our week, often focused on how the pandemic was affecting us personally and professionally. Our multidisciplinary team would speak openly about feeling empowered at times and discouraged at others when attempting to serve the complex needs of our patients, whose families were being ravaged by this virus. The connectedness felt with our patients and colleagues during this time was an inspiring reminder of how open communication and a sense of community is integral to sustaining collective physical, mental and spiritual health throughout a pandemic.

A few weeks later, we noticed another global response in the form of a civil rights movement for racial justice in response to the murder of George Floyd. The feeling of connectedness subsided and was swiftly replaced with tension and uncertainty of how to speak with each other about racism and how it affects the health of our patients and us.

“I don’t see color,” were the words our colleague used as protests broke out about the injustice faced by George Floyd that ultimately led to his death. We knew our colleague was concerned and well-meaning when stating she saw everyone the same. However, we wanted to hear that she saw color and acknowledged this as an important part of the beauty of our individualism as well as the cause of injustices faced. It was not uncommon for us as Palliative Medicine physicians to address death. The manner in which Mr. Floyd’s death occurred, however, was a tragedy that stuck with many of us, especially those of us who identified as persons of color. To see a man treated less than how an animal would be treated made us worry about our patients, friends, colleagues and our own children who could (and probably would) one day be targeted by the systemic racism that led to Mr. Floyd’s death.

It was hard to imagine how people didn’t see color. As brown women in Medicine, we didn’t have the luxury of not seeing color – it was something we had to contend with on most days. However, these experiences didn’t compare to that of our Black friends and patients who experienced far greater injustices due to their color. These experiences included one of our Black friends carrying her badge and stethoscope everywhere so if stopped by the police, they knew she was a working professional and didn’t assume otherwise. Another of our colleagues in Medicine, a young Black man, often spoke about his experiences with being pulled over by police and having a gun pointed at his head. The luxury afforded to our white colleagues was not one that persons of color had – the ability to not see color. And as we looked at our colleagues during that conversation, we noticed the only people speaking in the room were those who identified as persons of color.

It made us realize as physicians in one of the largest Palliative Medicine programs in the Deep South, that we needed to do better. EVERYONE NEEDED TO DO BETTER. As Palliative Medicine clinicians, we pride ourselves on communication skills and quality of life. How could we attend to this with our patients if we were not attending to this in our own backyards and with our colleagues? Seeking to understand the disparities faced by our own colleagues could only help us understand some of the disparities faced by our patients including lack of access to opioids, maltreatment when seeking opioids, medical mistrust which often led to prolongation of interventions not promoting quality of life, a reluctance to seek medical care and often a reluctance to seek hospice care when appropriate.

The prospect of discussing racism with our colleagues and patients can be daunting. However, for those of us practicing Palliative Medicine, we are no strangers to having tough conversations. In fact, we can utilize Palliative frameworks to approach conversations around race and inequity. Some steps to take toward this include:

1) Asking permission to start a conversation about racism, an often triggering or uncomfortable subject for many.

2) Offering a safe space for patients to share how racism might be affecting their access to healthcare and quality of life including physical and/or mental health.

3) Providing space for colleagues to share how racism has impacted their own personal and professional lives.

4) Normalizing conversations around racism for multidisciplinary teams in the contexts of collaboration and professional growth and for patients in the context of psychosocial stressors.


Starting these important conversations within our teams can help us better understand how to align with our Black colleagues to change a system that has not historically welcomed nor encouraged their professional upward mobility. Similarly, this open communication with patients provides opportunities to improve the medical and psychosocial support we as Palliative Medicine teams can offer our most vulnerable patients.

In these unprecedented times, we as Palliative Medicine clinicians have a unique opportunity to utilize our communication skills to lead discussions on racism for our colleagues and patients. Similar to how our field prioritized serious illness and end of life care, we need to prioritize changing patterns of silence and inaction that have led to the current injustices and health disparities our Black/Indigenous/Persons of Color (BIPOC) colleagues and patients are facing. It is time for us to collectively use our voices, our time and our training to unite in support of our patients and colleagues and to proclaim Black Lives Matter.

For more reading material, the following sites have excellent information:

https://www.nationalpartnership.org/about-us/racial-equity/racial-equity-reading-and-learning-resources.html
https://www.racialequityinstitute.com/rei-blog

Michelle Christopher, MD is a palliative medicine physician at University Medical Center, a safety net hospital in New Orleans, and an Assistant Professor with Tulane University School of Medicine. She enjoys cooking Sri Lankan food, exploring the cultural and culinary wonders of New Orleans, and traveling.

Sonia Malhotra, MD, MS, FAAP is Director of Palliative Medicine and Supportive Care at University Medical Center, New Orleans and Tulane School of Medicine. She loves cooking, reading and the arts which include a passion for dancing. In her past, she was Captain of her college’s Bhangra and Hindi Film Dance teams.