Monday, March 22, 2021
Another year, another study proving the value of the palliative care social worker. Edmonds et al (2021) found that when a social worker was involved in a palliative care consultation, whole-person care components were more likely to be addressed, including addressing psychological (82% vs 18%) and spiritual needs (92% vs 8%) and documenting advance directives (90% vs 10%). This adds to what we already knew: involvement of social work impacts quality of care and patient satisfaction (Auerbach, 2007; O’Donnell et al., 2018).
It surprises me that despite much research and team role development, palliative care team members may not be aware of the importance of the palliative care social worker. And yet, as a Hospice Social Worker, in the year of the pandemic, I was considered non-essential. I was not the only one. Around the country, I heard stories of many palliative care and hospice social workers being sent home. Unfortunately, many articles had to be written this year arguing that the social worker is essential (Guerrero 2020; Lipe 2020; Abrams 2020; Gewirtz 2020). Still, so many of us continue to be asked: What does a palliative care social worker do?
If what you know about social workers comes from TV you would think we primarily work for child protective services. If all you know of us is what you see in your ambulatory clinic you might think a social worker is only helpful for ordering a patient oxygen or a rolling walker. These misconceptions are common. After all, the profession of Social Work is represented in many different fields of practice. Our educational training varies and there are many levels and degrees one can have to be called a social worker.
There is a wide range of variation for social work practice in the healthcare setting. Hospitals have social workers as case managers doing discharge planning; some are employed as behavioral health specialists, substance use experts and counselors, and population health managers; some clinical social workers are on Palliative Care teams providing extensive psychosocial care; and some are cognitive behavioral therapy experts in the outpatient setting. Quite a wide gamut. This broad range of practice is both a strength and a challenge for the social work profession because it can make it difficult for others to understand our value.
As March is social work month, let’s spend some time reflecting on the value of social work within the palliative care team. So here is what we do…. (this is not all inclusive!)
Broadly, we provide psychosocial care to patients and families. We are mental health providers who are trained to facilitate family meetings, manage family dynamics, and assess and treat anxiety and depression. We provide counseling to patients, children, and families. We assess for pain, spiritual needs, and advocate for a clear plan of care. We have advance care planning conversations and help to locate resources for patients and families.
We have an expert understanding of the social determinates of health and engage in cultural curiosity, often helping reframe concerns for our team members. For instance, we interpret medical information for the patient and family (think of your patients asking, “What did they just say?”). We coach surgeons prior to a “difficult” conversation, sharing our insight about family dynamics, use of language, and culture to guide them. We listen to the moral distress from bedside nurses in ICU units, offering strategies for well-being. We are often the team member who takes responsibility for team wellness and reflection, helping our colleagues identify their own reactions to difficult cases.
Palliative care social work has come a long way. Like our physician and nursing colleagues, we now have our own evidence-based certification: the APHSW-C. We have a national organization of 1,000 members – the Social Work Hospice and Palliative Network (SWHPN) and over 10 social work fellowships across the country, to train post-masters social workers in specialty level palliative care.
All palliative care team members listen with their own attention, intention, and biases. That is surely the beauty of working as a team, learning and depending on each other to provide the best care. As Rosa, et.al. suggests, we have an opportunity, right now, to become transdisciplinary teams “co-creating a unified framework for delivering palliative care that transcends disciplinary perspectives.” (Rosa et.al., 2020) This transcendent palliative care team requires that we all commit to having a shared understanding of each other’s value. While social work may be a large umbrella, our role in serious illness care is clear and rooted in data. Please stand with us and use your voice to tell others about our value: We are crucial members of the palliative care team and we are essential.
For more Pallimed posts by Vickie Leff, click here.
For more Pallimed posts about social workers, click here.
Vickie Leff, LCSW, APHSW-C is the Executive Director of the Advanced Palliative & Hospice Social Work Certification Program; she is also an Adjunct Instructor at the UNC School of Social Work, Chapel Hill. She still thinks that running a 6 hour marathon is actually a really good finish time.
References
Abrams, L. S., & Dettlaff, A. J. (2020). Voices from the Frontlines: Social Workers Confront the COVID-19 Pandemic. Social work, 65(3), 302–305. https://doi.org/10.1093/sw/swaa030
Auerbach, C. (2007). Evidence that Supports the Value of Social Work in Hospitals. Social Work in Health Care, 44(4), 17–32. https://doi.org/https://doi.org/10.1300/J010v44n04_02
Edmonds, K. et al (2021). An Exploratory Study of Demographics and outcomes for Patients Seen by Specialist Palliative Care Social Work in the Inpatient Setting at an Academic Center. Journal of Pain and Symptom Management.
Gewirtz, R. (2020) As I See It: Social Workers are Essential personnel; So, why aren’t we talking about them? Retrieved from: https://www.telegram.com/news/20200330/as-i-see-it-social-workers-essential-personnel-so-why-arent-we-talking-about-them
Guerrero, L., Avgar, A., Phillips, E., Sterling, M. (2020). They are Essential Workers now, and should continue to be: Social Workers and Home Health Care workers during COVID-19 and Beyond. Journal of Gerontological Social Work. http://doi.org/10/1080/01634372.2020.1779162
Lipe, L. (2020) Social Workers are Essential Workers. Retrieved from: https://www.socialworker.com/feature-articles/practice/social-workers-essential-workers/
O’Donnell, A. E., Schaefer, K. G., Stevenson, L. W., DeVoe, K., Walsh, K., Mehra, M. R., & Desai, A. S. (2018). Social Worker-Aided Palliative Care Intervention in High-risk Patients With Heart Failure (SWAP-HF): A Pilot Randomized Clinical Trial. JAMA Cardiology, 3(6), 516–519. https://doi.org/10.1001/jamacardio.2018.0589
Rosa, W. et al (2020) Coronavirus Disease 2019 as an Opportunity to Move toward Transdisciplinary Palliative Care. Journal of Palliative Medicine, 23(10), pp. 1290–1291.http://doi.org/10.1089/jpm.2020.0306
Monday, March 22, 2021
Monday, March 15, 2021
Fortunately for me, the pandemic has not interfered with my life-long hobby: video games. I finally got around to playing What Remains of Edith Finch, a game that received high praise for its short but engrossing Lovecraftian-esque narrative. What I experienced was a surprisingly insightful exploration of humanity’s relationship with death.
Coincidentally, I had just read BJ Miller’s opinion piece “What is Death?” in The New York Times and was struck by the parallels between it and What Remains. This game illustrates how one may “fold death into our lives,” and what can happen when we refuse to do so. As Dr. Miller says, “We really have only two choices: to share life with death or to be robbed by death.” What Remains doubles down on this sentiment by turning tragedy on its head and daring us to find beauty in every story (or video game), no matter how short.
What Remains centers on a young woman named Edith Finch who returns to her childhood home following the death of her mother. Now the last member of her family, Edith is searching for an explanation for the infamous Finch Family Curse. For reasons unknown, the tragedy of untimely death has stalked the Finch family for countless generations.
What I found more captivating than the mystery of the curse was the variety of ways the family copes with terrible loss. The game places particular focus on the narratives of Edith’s mother, Dawn, and Edith’s great-grandmother, Edie. Edie, now in her 90s, has lived in the family home since she and her late husband built it 80 years prior. Over the years she has lost her husband, five children, two grandchildren, and two great-grandchildren within the home. Instead of turning away from this massive heartache, Edie preserves each room as a memorial to celebrate the person that lived inside it. She refuses to repurpose these rooms for new family members, and instead tacks on new rooms to the house whenever needed. As a result, the house takes on a haphazard, other-worldly appearance as if it were a living organism.
Dawn, on the other hand, is terrified of her family’s past and eager to conceal it from her children. Rather than discuss death with her children, she seals off the memorialized rooms and refuses to talk about their relatives. However, as Dawn finds out and as we in palliative care know, it is impossible to insulate loved ones from loss forever. When Dawn dies, Edith is left to uncover her family’s history – and navigate the pain associated with what she finds – entirely on her own.
So often in palliative and hospice care we bemoan our culture’s aversion to the topic of death and dying. Experiencing What Remains and reading its overwhelmingly positive reviews gives me hope that the aversion may not be as strong as we think. On the contrary, it would seem there is a hunger to explore the existential in more ways than we realized -- even if some are slightly unconventional.
“If we lived forever, maybe we'd have time to understand things. But as it is, I think the best we can do is try to open our eyes. And appreciate how strange and brief all of this is.” --Edith Finch
What Remains of Edith Finch? is available to play on PlayStation, Xbox, and Windows (via Steam).
For more Pallimed posts on video games, click here. For more Pallimed posts by Dr. Tyler click here.
Matt Tyler is a palliative care doctor in Chicago. If he's not watching Cocomelon with his daughters, he is probably playing video games or making palliative care skits on TikTok.
Monday, March 15, 2021
Tuesday, February 16, 2021
Short notice, but yes, there will be a Pallimed/GeriPal virtual party this year. Never missed a year! Have we planned a lot around this? No. Do we want to see friends and colleagues and meet new people? Yes. Can we do it with minimal expectations? We hope so!
We are not sure what to expect, but when we did this in person there was never that much of a plan anyway, except where to go next, and even that was up for improvisation.
So what might we do. Probably hang out in different Zoom rooms talking about different subjects, playing games, talking about palliative care things, or maybe not palliative care things.
When: Wednesday, Feb 17, 2012
Where: Zoom invite via email sent by email at 5p CT
UPDATE: Invites have been sent. Ping @ctsinclair or @pallimed on Twitter and we will try to add you before 9p ET.
Reserve time on your calendar now! Share this with your friends. Get them registered too.
Keep an eye out on the Twitter accounts of Pallimed and GeriPal just in case this thing goes big and we need to make alternative plans.
Tuesday, February 16, 2021
Saturday, January 30, 2021
This is exactly how we felt when we read the AAHPM Quarterly Winter 2020 Let’s Think About It Again.1 (member paywall)
Should a patient be offered chemotherapy if he does not receive appropriate care for his ongoing SUD?
If this question does not immediately cause you to feel intense discomfort, we suggest you pause and consider why this might be. We think even asking the question this way is harmful, as it presents as a reasonable option denying a middle aged patient with a highly treatable cancer standard medical care, due to having opioid use disorder (OUD) as a comorbidity.
Fundamentally, the question is about who we think is deserving and able to receive cancer treatment.
Keep in mind here - this is a discussion about untreated small cell lung cancer, one of the most highly aggressive yet chemotherapy-responsive solid tumors we encounter. Without chemotherapy, this patient will almost certainly die in 1-2 months. While extensive stage small cell lung cancer is not curable, with treatment, there is a reasonable chance he could live a year, and with newer therapies some patients are now living substantially longer. His ongoing heroin use is undoubtedly a source of significant suffering for the patient, and is a comorbidity which will complicate his care, require intense help, and may possibly shorten his life, but asking if we should even bother to treat this patient’s cancer is asking whether we think his life has value.
Ie, is dying in 2 months from untreated cancer alongside suboptimally treated OUD an acceptable alternative to dying in 1 year from properly treated cancer alongside suboptimally treated OUD (for a patient who wants cancer treatment)?
We want to know, where is the debate here, unless you don’t believe people who inject drugs are worthy of life-prolonging treatments?
This is why we think even asking the question this way is harmful to our patients and community, as it devalues the life of patients who live with a highly misunderstood and stigmatized disease (opioid use disorder).
Additionally, the framing of the question as should he be offered chemotherapy “if he does not receive appropriate care” for his ongoing SUD suggests that we should all have a debate about whether we should make markedly life-prolonging therapies contingent on ‘compliance’ with SUD treatment. This is sort of akin to denying someone, say, oral surgery for tongue cancer because they still smoke. So, sure, that patient’s health will be better if they stop smoking, and their ongoing smoking may yet kill them, but also maybe it won’t, and denying that patient a treatment (surgery) which will likely markedly prolong their life just because we don’t like the fact that another comorbidity is ‘uncontrolled’ is madness. We’d all urge that patient to stop smoking, offer them resources, keep the conversation going, while simultaneously giving them standard medical care.
We would certainly not pin their ability to get life-prolonging treatment on their ‘obedience’ to a treatment plan for their tobacco addiction, either. It’s only because addiction is so misunderstood and patients who use drugs are so stigmatized that we think this is an ok debate to even have.
In this context we submitted a letter to the editors of the AAHPM Quarterly asking for them to retract this discussion and to try to make amends for the harm we believe it causes our patients and community. (Of note, we really appreciate and are grateful for the perspective of the author advocating for giving chemotherapy for this patient while doing what you could do to help him with his SUD, but also thought the larger framing of the discussion was overall harmful and felt a retraction was best.) We are very disappointed they did not retract the article, and so we thought we would talk to our broader community about how we think about our patients who have SUD.
Let’s start by taking a different approach to this story.
Acknowledge people with SUD consistently experience barriers to appropriate care because of persistent healthcare stigma and inadequate understanding of addiction. Care of this population demands a close examination of our stereotypes of people who use drugs and become more aware of implicit and explicit biases.2
Imagine if we did that--imagine what sort of debate and discussion we as a community could be having about our very ill patients who suffer from SUD alongside other serious illnesses?
Just think about this very case - we could debate:
- What *are* the best ways to support his safety while he gets chemo and lives with an active SUD?
- If he also had severe pain from the cancer - is there a role for strong opioid agonists to treat that pain given his active SUD?
- What is the role for palliative specialists in his care, vs addiction specialists and others?
- What are the knowledge and skills palliative specialists should have to help patients in this situation?And many more questions.
All of these questions are rooted in a perspective that views this patient’s life as precious and assumes that we health care professionals can and will lean into these most difficult of clinical scenarios with compassion and skill, and not give up on patients like the man in this case because there is challenge and risk.
There is more we can say, but we recommend that all of us in the palliative care community be prepared to promote evidence-based SUD care for patients with serious illness. Here are some basics:
1. Treat addiction as a chronic disease and give it equal attention to other serious illnesses. A heroin overdose signals a period of increased disease activity requiring more robust healthcare support. Overdose is a significant exacerbation of disease and an opportunity for engaging the patient in life-saving treatment. People with SUD should be regularly offering life-saving therapies like buprenorphine or methadone for OUD.4
2. Engage in a goals and values discussion, including goals about substance use.“Not taking Suboxone and managing his heroin use on his own” is not a discussion. As PC clinicians, we must regularly probe further to understand the rationale behind patients’ decisions and help people grapple with ambivalence. In other disease states, when patients make decisions that we feel are not in their best interest, we explore these decisions in a non-judgmental fashion. We use communication techniques such as motivational interviewing and open-ended questions to stimulate a discussion that challenges the status quo and minimizes harm.5
3. Shared decision-making in a patient with SUD needs to incorporate discussing the benefits and tradeoffs of decisions and to provide information to help patients make choices that align with their goals. The patient’s interest in pursuing chemotherapy suggests an interest in life-prolonging treatment, which should not be undermined by a one-time decision not to engage in SUD treatment. Patients with SUD often require multiple engagements with different treatments before achieving remission.6 We should never give up on patients with severe SUD, there is always hope, and there are always ways we can help them be suffer less, lead better lives, and be safer even if they continue to use harmful drugs or alcohol!
4. Attend to psychological trauma and provide trauma-informed care that recognizes that medical care (including a diagnosis of life-threatening illness and pursuing substance use disorder treatment) may be anxiety-producing, resulting in avoidance of medical care. 7,8 Identifying potential barriers to treatment and sources of suffering is core to providing both trauma-informed care and palliative care. As PC clinicians, we must respond with empathy and cultivate a safe environment. For addiction treatment at the first oncology visit, declining medication may not reflect long-term choices, and treatment should be reviewed at each encounter and integrated into standard practice.9 Similarly, before confiscating the patient’s access to chemotherapy and deepening SUD disparities, a thorough differential for declining the Suboxone is needed. Did the patient have a prior experience with Suboxone for OUD, is Suboxone too expensive, would he instead engage in methadone maintenance treatment, is he worried Suboxone would not adequately treat underlying pain, etc.? Integrated treatment models that combine medication addiction treatment and life-saving treatment (see endocarditis literature!) have shown promising results.
5. Do not miss the opportunity for a discussion of harm reduction. 10 An opioid overdose represents a critical time to revisit goals and values. We should seek to understand what led to the overdose and consider preventing an overdose in the future such as offering naloxone, assessing current use and injection practices, and recommending never-use-alone resources. The National Harm Reduction Coalition website contains excellent information.11
In summary, while undoubtedly this patient’s ongoing heroin use will complicate his care, allowing him to die rapidly of his treatable (albeit not curable) cancer constitutes far more significant harm to him. As a field, rather than focus on whether people with SUD should receive care, we must examine existing policies, clinical practices, and stigma that create barriers for patients who use drugs to engage in treatment. Providing care to individuals with SUD and serious illness can be challenging, but it can also be some of the most rewarding professional work we do.
Katie Fitzgerald Jones MSN, APN (@kfjonespallnp) -- Hospice & Palliative Care Nurse Practitioner at VA Boston Healthcare System and Nursing Ph.D. student at Boston College.
Janet Ho, MPH, MD -- Palliative and Addiction Medicine Physician University of California San Francisco
Zachary Sager (@ZacharySagerMD), MD -- Psychiatrist and Hospice & Palliative Medicine Physician VA Boston Healthcare System
Drew Rosielle (@drosielle), MD -- Palliative Medicine physician at the University of Minnesota Medical School/M Health Fairview
Jessica Merlin (@JessicaMerlinMD), MD, Ph.D., MBA -- Addiction Medicine, Infectious Disease, and Palliative Medicine Physician University of Pittsburgh School of Medicine.
1. Let's Think about it Again. http://aahpm.org/quarterly/winter-2-lets-think-about-it-again. (Sorry, this is behind a paywall at AAHPM for members only.)
2. Botticelli MP, Koh HK. Changing the Language of Addiction. JAMA. 2016;316(13):1361-1362.
3. Ferrell BR, Twaddle ML, Melnick A, Meier DE. National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition. J Palliat Med. 2018.
4. Larochelle MR, Bernstein R, Bernson D, et al. Touchpoints – Opportunities to predict and prevent opioid overdose: A cohort study. Drug and Alcohol Dependence. 2019;204:107537.
5. Shared Decision Making Tools. Substance Abuse and Mental Health Service Association Web site. https://www.samhsa.gov/brss-tacs/recovery-support-tools/shared-decision-making
6. Snow RL, Simon RE, Jack HE, Oller D, Kehoe L, Wakeman SE. Patient experiences with a transitional, low-threshold clinic for the treatment of substance use disorder: A qualitative study of a bridge clinic. Journal of Substance Abuse Treatment. 2019;107:1-7.
7. Tripp JC, Jones JL, Back SE, Norman SB. Dealing With Complexity and Comorbidity: Comorbid PTSD and Substance Use Disorders. Current Treatment Options in Psychiatry. 2019;6(3):188-197.
8. Sager ZS, Wachen JS, Naik AD, Moye J. Post-Traumatic Stress Disorder Symptoms from Multiple Stressors Predict Chronic Pain in Cancer Survivors. Journal of Palliative Medicine. 2020.
9. Lagisetty P, Klasa K, Bush C, Heisler M, Chopra V, Bohnert A. Primary care models for treating opioid use disorders: What actually works? A systematic review. PLoS One. 2017;12(10):e0186315.
10. Hawk M, Coulter RWS, Egan JE, et al. Harm reduction principles for healthcare settings. Harm Reduct J. 2017;14(1):70.
11. National Harm Reduction Coalition Website http://harmreduction.org/Saturday, January 30, 2021
Thursday, January 28, 2021
Most palliative care teams love to have medical students on service, but the access may be variable. Some schools make palliative care rotations mandatory, some optional, while others make it hard to find or "build your own." I do outpatient palliative care, so I see medical students less often than my inpatient colleagues, but we do get a number of nursing students, pharmacy residents, psychology learners rotating with our clinic at the University of Kansas Medical Center. Having learners rotate is an excellent way to teach primary palliative care skills, to help learners early in their career on the best ways to introduce palliative care, and maybe finding a few future colleagues.
So imagine my dismay on seeing this:
I *finally* get the courage to admit to people that I want to go into palliative care. People laugh and turn away. Or worse, “don’t worry you’ll change your mind!”
— Sylvia Lane (@sylv_lane) January 24, 2021
All my friends say they want to be surgeons. They get red carpets, egots, and champagne kisses!!
What gives?
(Editor note: Sylvia Lane wrote more about her decision to choose palliative care for a career here.)
Or this tweet from from an AAHPM Poster Award winner:
Attending: "What specialty are you thinking of?"
— Kayla Sheehan, MD (@kksheehan) July 23, 2018
Me: "#Palliative"
Attending: "No one has ever said that answer before."
Give me a couple years. I'm rounding up some troops! #hpm
Take a few deep breaths. Those two learners are going to be OK. After sharing those potentially demoralizing experiences, the #hapc (hospice and palliative care) Twitter community lifted them up, sharing supportive stories, potential comebacks for the next time they hear something like that, resouces like joining AAHPM, and networking with other learners or local mentors. Some even shared their own challenging retorts to pusuing a career in hospice and palliative care.
Are learners hearing this more often? What is the not-so-subtle message being conveyed about our work? What can we do to foster more interest in palliative care as a career and/or a skill set to build? What can we do about our colleagues who may be undermining great candidates for our field? I would love to hear your ideas. Because we need more people interested in working in palliative care and hospice as a career. (Editor's Note - that article was written for CAPC by one of the Twitter users above!)
If you are a learner who found this post, I am so glad you are interested. Here are some simple things for learners of all professions to get you started:
- Find your local academic palliative care faculty or academic hospice organization
- If you are on Twitter follow hashtags like #hapc or #palliativecare, and check out this list of some of the first people and orgs to follow in palliative care
- If you cannot find someone in your specialty, start with someone doing palliative care work in another specialty as a resource
- Find the national organization that represents your field and either does palliative care and hospice work or has a special interest group:
- - American Academy of Hospice and Palliative Medicine (AAHPM) - www.aahpm.org
- - Hospice and Palliative Nurses Association (HPNA) - www.advancingexpertcare.org
- - Physician Assistants in Hospice and Palliative Medicine (PAHPM) - www.pahpm.org
- - Social Work Hospice and Palliative Care Network (SWHPN) - www.swhpn.org
- - Society of Pain and Palliative Care Pharmacists - www.palliativepharmacist.org
If you have some great ideas, please share them in comments below or share them with me on Twitter and I will add them to the original post.
*Both people gave permission to embed their posts here.
For more Pallimed posts about learners.
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.
Thursday, January 28, 2021
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
Friday, January 1, 2021
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.
Friday, January 1, 2021
Saturday, November 21, 2020
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.
Saturday, November 21, 2020
