Tuesday, February 16, 2021

Pallimed GeriPal Virtual Gathering 2021

by Christian Sinclair (@ctsinclair)

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 by Christian Sinclair ·

Saturday, January 30, 2021

Confronting Stigma From Opioid Use Disorder in Cancer Care

by Fitzgerald Jones, Ho, Sager, Rosielle and Merlin

Have you ever been so distressed by a perspective piece that it kept you up at night? The type of rumination that fills you with so much angst that you have no choice but to act. 

This is exactly how we felt when we read the AAHPM Quarterly Winter 2020 Let’s Think About It Again.1 (member paywall)

The column, which is structured as a sort of written debate in which two authors argue a clinical question, describes a case of a 45-year-old man with severe substance use disorder (SUD) recently diagnosed with extensive-stage small-cell lung cancer. He was offered aggressive chemotherapy and a referral to a clinic to address his opioid use disorder but did not follow up in the SUD clinic and later presented to an emergency department after a heroin overdose that reversed with naloxone. At his oncology follow-up, he expresses a desire to proceed with chemotherapy but a reluctance to take medication for addiction, stating he can manage his heroin use on his own. The case  notes a history of long standing depression and recent homelessness.  The column then poses the question:  Should a patient be offered chemotherapy if he does not receive appropriate care for his ongoing SUD? Two authors then wrote their different responses to that question (yes give him chemo, or no). 

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.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 by Drew Rosielle MD ·

Thursday, January 28, 2021

Fostering Student Interest in Palliative Care

by Christian Sinclair (@ctsinclair)

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:

Or this tweet from from an AAHPM Poster Award winner:

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 hsopice 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 by Christian Sinclair ·

Monday, January 18, 2021

Social Media Stats for Palliative Care Journals 2020

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 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!)

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 by Christian Sinclair ·

Friday, January 1, 2021

Olanzapine FTW for Nausea Outside of CINV

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.

Friday, January 1, 2021 by Drew Rosielle MD ·

Saturday, November 21, 2020

Addressing The Range of Patient Beliefs About COVID-19

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.

Saturday, November 21, 2020 by Pallimed Editor ·

Friday, October 23, 2020

Chlorpromazine in Delirium FTW!

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.

Friday, October 23, 2020 by Drew Rosielle MD ·

Monday, October 19, 2020

Patient Access to Notes is Coming! Is Palliative Care Ready?

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!

Monday, October 19, 2020 by Christian Sinclair ·

Thursday, September 24, 2020

Obstetrics and Gynecology Needs Palliative Care

by Nathan Riley 

"Can you all, please, just leave us alone?"

One particular experience with the death of a newborn stands out in my mind. Moments after birth the baby was breathless, and the neonatology team could not intubate. All of the kingdom’s pediatric surgeons and other specialists rushed to labor and delivery to no avail. The baby was born with a four centimeter gap in his trachea, an irreparable condition. The mother sat there, holding her dying baby as he took his last breaths while physicians, nurses, and residents were busy as usual. Click-clacking away on computers. Adjusting blankets. Asking questions. Rearranging surgical instruments. This bustle continued until she repeated herself a little more forcefully: “LEAVE US ALONE!”

This experience illustrates how, in a mother’s moment of suffering, a room full of prolific fixers, doers and problem-solvers came up empty-handed. While the loss of a newborn is a relatively rare occurrence, suffering - physical, emotional, psychosocial, or spiritual - is common in the world of women’s health. Likewise, if our only goal on labor and delivery is “healthy baby and healthy mom,” we are without recourse when the normal hazards of being human – many of which are completely out of our control - befall us.

As an obstetrician and palliative medicine specialist, I often wonder how we might approach these challenging scenarios differently. My palliative medicine training taught me that not every problem can - or should - be fixed. My time with patients is often just as well spent sitting in silence as they process the emotions that come with bad news. Even my approach to invasive exams, pregnancy, birth, and pain management is met with an open mind and conversation before putting my steel instruments or medicines to use. After all, a “good outcome” is variable and highly dependent on the patient’s values and goals, and I cannot uphold these values without first building a relationship.

To illustrate how obstetrics and gynecology might be improved through a palliative care touch, let us take a look at one of the most common diagnoses that OBGYNs face in their daily work lives: early pregnancy loss.

Statistically, ten percent of pregnancies end early as a spontaneous abortion or as a “blighted ovum”, in which case the embryo does not develop at all. The diagnosis is thus all too familiar to us providers, but rarely do we consider its gravity on our patients.

The typical clinical routine after a positive over-the-counter pregnancy test is as follows. The patient is greeted on crinkly white paper and positioned in stirrups while the busy clinician offers congratulations. The clinician lubricates and inserts an ultrasound probe into her vagina, swiftly waving the wand around to assess her anatomy. If unable to identify a viable embryo inside the uterus, the clinician resorts to various platitudes to communicate the findings. We are not trained to address anger, sadness, despair, or to consider that this news might even bring relief. In my OBGYN training, my preceptors modeled how to deftly fill any lull in conversation left by the wake of the bad news with generic consolations followed by a list of management options.

Maybe she is facing financial hardship due to the cost of infertility treatments? Maybe this same thing happened in the past and she nearly died from blood loss as a result of a “routine” dilation and curettage? Have you explored whether this is even a desired pregnancy?

A palliative approach to early pregnancy loss would be predominated by conversation, storytelling, and connection, all before a woman is even asked to undress from the waist down. It would include extensive information gathering in order to guide the diagnostic imaging process and align any conversation thereafter with the patient’s expectations and hopes. Early pregnancy failure can be catastrophic to the patient and their partner, and the delivery of this news requires patience and empathy. As with a cancer diagnosis, a patient may not be ready to hear everything that immediately follows the delivery of bad news. With this in mind, it would be better to discuss management options once the patient has had a few moments to process the news, perhaps in an adjacent room away from happily pregnant women or crying newborns. The palliative approach may even include a social worker or chaplain on standby to meet the great psychological, emotional, and spiritual needs for which other clinicians are ill-equipped.

As OBGYNs, we are privileged to play a role in patients’ most intimate experiences, which are often rife with fear, hesitation, and humanity. Our practice ranges from management of suspicious masses to therapeutic abortion, from infertility to debilitating pelvic pain. We are also responsible for guiding conversations around life-limiting or life-threatening prenatal diagnoses.

Challenging experiences – including rare fetal malformations and the all too common early pregnancy loss – abound in women’s healthcare, and many of these experiences lead to varying degrees of worry and suffering on the part of our patients. The adoption of a palliative approach has the potential to transform obstetrics and gynecology to a patient-centered discipline rooted in compassion and informed by our patients’ values.

And yes, when occasional tragedies arise, we must also learn that in birth – as with death – not being able to fix a problem does not imply failure or inadequacy. Sometimes holding space for these tender moments is the only thing to do, and it can be so therapeutic.

Nathan Riley, MD, is an OBGYN and hospice physician with Hosparus Health in Louisville, KY. He also works remotely as a telehealth palliative care physician for Resolution Care.

Thursday, September 24, 2020 by Pallimed Editor ·

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