Mastodon 2018 ~ Pallimed

Monday, December 31, 2018

Writing a Book

by Robert Macauley

I could write a book about that…

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

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

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

Can you really write a book about that?

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

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

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

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

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

Does the world need the book you want to write?

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

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

Be strategic

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

Gather a team of rivals

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

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

There’s a thin line between love and hate

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

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

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

The end

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

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

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

Monday, December 31, 2018 by Pallimed Editor ·

Monday, November 26, 2018

National Academies Webinar on Opioids in Serious Illness This Thursday

by Christian Sinclair (@ctsinclair)

Many of us who work in palliative care and hospice have seen a major shift in how patients and families respond to opioid prescribing for pain in serious illness. Because of the significant impact of opioid abuse on communities across the country, many new policies and rules are being put in place to reduce the prescriptions of opioids. Of course, this also places a burden on prescribers and patients seeking to utilize opioids judiciously for pain from advanced disease.

For the past few years, I have represented the AAHPM at the Roundtable on Quality Care for People with Serious Illness hosted by the National Academies of Sciences, Engineering and Medicine (NASEM) (formerly known as the Institute of Medicine IOM). This Thursday, November 29, 2018, NASEM is streaming a free, live conference on "Pain and Symptom Management for People with Serious Illness in the Context of the Opioid Epidemic."

This topic is of utmost importance for any palliative care clinician and with the high caliber of speakers and curated information I strongly encourage someone from your organization or team to make room on Thursday to participate in the stream. There will be the ability to ask questions via Twitter at the end of sessions, so you have a chance to get the information you need.

I have been lucky enough to attend all of the public workshops for the Roundtable and I can say that the speakers are first-rate and the information is key to managing care for the seriously ill. They are one of the best free online learning experiences in the realm of palliative care in the last few years. So sit down and carve out sometime on Thursday. And if you cannot make this one, NASEM is great at posting videos online afterward.

Register today!

You can also follow on Twitter at #SeriousIllnessCareNASEM.

Christian Sinclair (@ctsinclair) is a palliative care physician at the University of Kansas Health System and is editor-in-chief of Pallimed. When not traveling to Washington DC for the Roundtable, he can be found surfing online for other palliative care learning experiences.

Monday, November 26, 2018 by Christian Sinclair ·

Friday, November 2, 2018

Nope. We STILL Shouldn't Claim Prolonged Survival in Hospice and Palliative Care

by Drew Rosielle (@drosielle)

A group of investigators from Tulane recently published a meta-analysis in Annals of Behavioral Medicine indicating that outpatient palliative care improves survival and quality of life in advanced cancer patients (free full-text available here, although I'm not sure if that's permanent).

Perhaps you'll remember in June of this year when I pleaded with our community to stop claiming that palliative care prolongs survival (my little Twitter rant about this starts here).

My basic plea was this:
Hospice and palliative care community, I'm calling for a moratorium on all blanket, unqualified claims that hospice and palliative care improve survival.
I still, 100%, stand-by that plea as stated.

However, this meta-analysis does, I think, show the way forward for future investigators to continue to pool survival data across trials, as some of the trials show trends toward a survival benefit which aren't statistically significant and pooling data in a meta-analysis is reasonable. I just don't think this one really adds much to the discussion, unfortunately.

We've been able to for a while now, and still should, I think, continue to be able to make basically unqualified claims that hospice and palliative care programs improve the quality of life for patients living with serious illness, because the preponderance of the evidence continues to show that, and this meta-analysis also looked QOL outcomes too and showed, not surprisingly, broad and consistent improvements in QOL (I won't really talk about this in this post because, while awesome, it's also not really news).

So - great news! However we'll look through the metaanalysis and I hope you'll conclude with me that it's hardly the final story on this.

Nor does it change the concern that I have that our (over-) exuberant trumpeting of such outcomes as a community may not be in our best interest long-term. At the very least, I think we should continually be on the forefront of articulating the idea in any and all venues available to us, the desperately necessary moral position, that longevity alone is not the fundamental goal of medicine.

Living longer is great, as long as it's living well (whatever that may mean to someone), and we have to be one of the key groups of professionals clearly, proudly articulating the idea that living well is as important as living longer. We all know too well the physical and emotional/existential devastation that longevity-obsessed, technology & organ-focused medical 'care' brings to too many of our dying patients and their families. Helping those patients receive medical care which actually helps them is our gig, and the longevity bonus we may bring sometimes is of course totally swell, especially as it lowers barriers to us being able to see the patients we can actually help.

On to the meta-analysis. Basically the analysis confines itself to high-quality, randomized (either by patient or cluster-randomization) trials of specialist, outpatient palliative care services for patients with advanced solid tumors. There's a lot they looked at, but it basically is a meta-analysis of the 2 big Temel studies (NEJM 2010, JCO 2017), 2 of the Bakitas ENABLE studies (JAMA 2009 and JCO 2015) and Carla Zimmerman's 2014 Lancet study. (They sort of partially included 3 more preliminary and lower quality studies, but most of the headline findings here are restricted to the 5 larger, higher quality studies listed above.)

The Temel studies were basically looking at early (near the time of diagnosis), automatic, ambulatory palliative care for patients with metastatic lung (2010), or lung and GI cancers (2017) vs usual care. Both studies showed some QOL improvements, the 2010 study famously showed a survival benefit, the 2017 one did not. Both studies took place at Massachusetts General Hospital.

The Bakitas studies are a little complicated, but look at a package of interventions which include a visit with a specialist clinician (an APRN in 2009, unclear who they were in the 2015 study) and then regular phone calls for support and coaching around a variety of important concerns - life review, coping, end-of-life planning, etc. The 2009 study showed improvements in QOL and a non-statistically significant trend towards improvement in survival. The 2015 study showed improvements in longevity but not QOL. Perplexing, right?

The Zimmerman study is a Toronto cluster randomized (by different cancer clinics all within the same organization) trial of automatic clinic-based palliative care for advanced cancer patients which basically showed improvements in QOL (but not longevity that I know of).

So, to be clear, the meta-analysis involves 3 studies involving palliative care clinics within 2 organizations, and the 2 ENABLE studies involve a sort of intervention which, while scalable and probably beneficial to patients, is sort of its own thing, and not something most people would recognize as typical ambulatory palliative care services.

But, as it turns out the meta-analysis doesn't even really include all these studies in the actual primary analysis (they are included in the qol analysis and secondary analyses), because they chose survival at 1 year their primary outcome, and only the Bakitas studies and Temel 2010 have 1 year survival data available. I.e., Temel 2017 and Zimmerman 2014, neither of which showed a survival benefit, were even included in the analysis (and they also happened to be the largest of the 5 studies).

I.e., this is a meta-analysis of the famous Temel 2010 study, and the 2 Bakitas studies, one of which bizarrely showed a survival benefit and no QOL benefit (which, again, is interesting, and I honestly don't know what to make of it, but it's not the sort of trial I am going to make broad generalizations about, especially given that it doesn't involve a clinical model that is routinely used in ambulatory palliative care.) If you're interested, the pool survival benefit was 14.1% at 1 year (56.2% surviving vs 42.1% with usual care) in the Bakitas and Temel 2010 studies.

In their secondary analysis, which included survival at 3 months (and thus data from all 5 high quality trials), there was no survival benefit. There was a tiny benefit at 6 months (using data from all the trial except Zimmerman which, by the way, was the largest of the trials), and they looked at 9, 15, and 18 month survival but these basically were the same trials as the primary outcome trials.

So, to try to summarize all this, the actual headline finding here is that when you combine data of 2 of the studies to actually show a survival benefit with one which showed a non-statistically significant trend in survival benefit, you end up with a result which shows a statistically significant survival benefit.

This is why I don't think this paper should change how we talk about survival benefits from palliative care. It's still unclear, a lot of studies have shown no benefit, a few have, maybe we do some times, in narrow circumstances, but that's still not clearly been shown in any generalizable way, and that's about all yo
u can say about it. We can continue to say that we don't worsen survival, because only one study I know of has shown that, and we should continue to shout from the fucking mountaintops that we improve the quality of life of our very sick, very much suffering, seriously ill patient population. And I'm damn proud of that.

I do look forward to more meta-analyses in the future, and think it's a good approach to pool data from heterogenous trials to try to get some clarity on the possibility that there's a sort of 'generalized' survival benefit to palliative specialist services or not, and I'm glad these authors tried this approach, although I don't think it ends up adding much to the survival debate. So, onwards we go....

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. For more Pallimed posts by Drew click here.

Friday, November 2, 2018 by Drew Rosielle MD ·

Wednesday, October 31, 2018

NEW Clinical Practice Guidelines for Quality Palliative Care Released!!

by Christian Sinclair (@ctsinclair)

Happy Halloween!

Today is the beginning of a new era in palliative care as the 4th edition of the Clinical Practice Guidelines for Quality Palliative Care (aka NCP Guidelines) are being released into the wild to begin changing practices all over!

Well, that is the plan and the hope, of course. With any sort of guidelines or statement document, the real work comes AFTER they are published.

To be effective, policymakers, front-line clinicians, and healthcare leaders need to make time in their hectic schedules to review these new guidelines, compare what they are doing to what the standards are, and devise a plan to close those gaps. Over the next month in celebration of National Hospice and Palliative Care Month and the release of these guidelines, you will see posts on Pallimed and our social media accounts highlighting different aspects of the guidelines with straightforward action steps that you can implement.

You may be thinking, "4th edition? I never even heard of a third edition. What are these guidelines and who is telling me how to do my job?" If so, you should know that these guidelines date back to 2002 when The National Consensus Project began. That was a time when palliative care was beginning a rapid period of acceleration but still not widely available nor part of the mainstream of healthcare. The NCP released previous editions in 2004, 2009 and 2013. There is a good chance that some of the things you take for granted today in palliative care indirectly result from the standards set out in these previous editions. From my point of view, the NCP guidelines are designed to stretch us and enable our programs to become more efficient, effective and equitable.

The guidelines are structured to cover eight domains and my quick way of remembering what they are:
  • Structure and Processes of Care - who is on the team and what do they need to know
  • Physical Aspects of Care - how to assess and treat symptoms
  • Psychological and Psychiatric Aspects - how to assess and treat psych-related issues
  • Social Aspects of Care - how to assess and address social support
  • Spiritual, Religious, and Existential Aspects of Care - how to screen and support spiritual issues
  • Cultural Aspects of Care - how culture impacts care delivery
  • Care of the Patient Nearing the End of Life - how to excel in the special time of final days and weeks
  • Ethical and Legal Aspects of Care - regulatory, ACP, and ethics
Some big changes in this edition include a bigger emphasis on the caregiver as a locus of care, the burden of transitions, culture and diversity, and lifting up the science of communication. There is also more content that demonstrates the importance and growth of community-based palliative care and a more extensive reference section to ease access to the primary literature supporting the guidelines. I think many will appreciate the inclusion of examples which will enable teams and organizations to see themselves narratively and not get stuck on using imagination to make potentially dry guidelines come to life.

If you like what you see in these guidelines, please give a big thanks to the team behind it, co-chairs Betty Ferrell and Martha Twaddle, writer and editor Kathy Brandt, the National Coalition for Hospice and Palliative Care led by Amy Melnick and the NCP team of Gwynn Sullivan, Cozzie King, and Vivian Miller.

Lastly, to help all of us be more accountable, I want to encourage you to leave a comment telling the world what you plan to do with these guidelines. It could even be as simple as reading this post or sharing it with key people in your organization.

I'll tell you what I already did this morning, I went to my division chief, Karin Porter-Williamson and volunteered to be part of a small workgroup which will compare our current inpatient and outpatient programs at the University of Kansas Health System with the NCP Guidelines. To my delight, she said, 'Guess what just showed up in my email this morning? The new NCP Guidelines!"

So tell the world, what will you do with these blueprints?

Christian Sinclair, MD, FAAHPM, is the Editor-in-Chief of Pallimed and member of the palliative care dork club. When not reading guidelines over chai tea, he can be found reading rules to boardgames. See more posts from Christian Sinclair here. You can also find him on Twitter at @ctsinclair.

Wednesday, October 31, 2018 by Christian Sinclair ·

Wednesday, October 24, 2018

Antipsychotics Don't Help ICU delirium

by Drew Rosielle (@drosielle)

It just gets worse and worse for the idea that antipsychotics have efficacy for delirium.

Last year I posted about the RCT of haloperidol, risperidone, or placebo for delirium symptoms in 'palliative' patients. I'm pretty sure I called for more controlled, 'high quality,' trials, and we are lucky enough to have another.

This one is a randomized, double-blinded, registered, controlled trial of haloperidol, ziprasidone, or placebo for ICU delirium, just published in NEJM.

The trial took place in a geographically diverse group of US-based intensive care units. They enrolled adult patients in medical or surgical ICUs, who had delirium detected by the CAM-ICU (a well-validated tool: lots of info on it here if you want to read more). They did something interesting - they consented patients for the study (some of them at least) before the onset of delirium.  They also did prospective, broad case-finding, using research personnel to evaluate patients twice daily to see if delirium was present or not. They did not rely on clinical personnel in the ICU to identify delirium but instead proactively found them, which is a nice touch given how under-recognized delirium can be. My sense is that they consented patients rapidly upon admission to the ICU (or their surrogate), then followed them closely to rapidly identify those who developed delirium.

Once delirium was identified, patients were randomized to 2.5mg of haloperidol or 5mg of ziprasidone (or matching placebo) IV, then q12h. (Older patients received lower starting doses.) The dose of the study drug/placebo was doubled with each subsequent dose if the patient did not improve up to a maximum of 20 mg a day of haloperidol or 40 mg a day of ziprasidone. They halved the dose of the drug if a patient later had no delirium per the CAM-ICU, or stopped it if a patient was on the lowest dose already, or if the patient had 4 consecutive assessments indicating no delirium. Regardless, the trial drug/placebo was stopped at 14 days or ICU discharge if the patient made it that far and was still delirious.

The primary endpoint was days alive without delirium (per the CAM-ICU) or coma.

566 patients underwent randomization, 89% of those had hypoactive delirium. Median age was around 60 years old, 43% female, ~83% were white.

The median duration of exposure to a trial drug/placebo was 4 days, with the mean daily doses of 11 mg of haloperidol and 20 mg of ziprasidone.

Active treatment did not seem to do anything. The median number of days alive without delirium or coma was the same in both groups (8.5 vs 8.7). Secondary outcomes were similar between 'active' and placebo groups too - 30 and 90-day survival, time to discontinuation of ventilation, time to ICU discharge, ICU readmission, time to hospital discharge -- all the same.

Safety endpoints were the same across groups too with the exception that QT prolongation was more common in the ziprasidone group (it's not clear to me if this was statistically significant or not). Other side effects, including excessive sedation, were no different between placebo and the study interventions.

What does all this mean?
At the end of the day, I think it underlines the idea that antipsychotics have no routine role in the management of delirium.

It took me a while to accept this, but at this point I'm looking for any compelling data to suggest otherwise. We just don't have it, and I've mostly stopped prescribing antipsychotics for delirium. While any study like this has elements you can pick apart (e.g., I wouldn't exactly dose haloperidol like they did), at the end of the day they used reasonable doses, doses that I have commonly used, and they allowed relatively high doses to be used (this was not a study of super careful, wee doses). They identified the patients prospectively and rigorously - I don't think it likely that we're going to see a substantially better-designed study in the near future than this.

Notably, most of these patients had hypoactive delirium, and they did not break down their findings by patients who were hyperactive vs hypoactive. I imagine some people are going to argue that they should have done that but overall I'm glad they didn't. It was only 10% of their subjects, and it's better they didn't data-mine their findings that way. It could have been a prespecified analysis, which as far as I can tell it was not, and the study wasn't powered to detect differences between so few subjects, and so I'm glad they left it be.

I think it would be reasonable to argue that we still really need a similarly well-done, large, study only for hyperactive ICU delirium - I think we do - but I also don't see any reason any of us should advocate for the idea that antipsychotics are effective for hyperactive delirium in the meantime. They might be, but I don't think that's very likely personally. If someone does it, I really hope they include quetiapine as one of the arms, as it's used a lot around many institutions, and I suspect for the worse (although I truly don't know), and would welcome any good data on it.

At this point, I think a lot of the perceived benefits people have of antipsychotics is that they sometimes sedate people, even if only mildly at times, and so patients 'look better,' but we've actually done nothing to modify the course of their delirium or improve their cognition.

Sedating someone can sometimes be a perfectly reasonable/helpful/legitimate therapeutic outcome: for very agitated patients who may pose a risk to themselves, or for patients very near the end of life for whom our care goals are really centered on preventing and actively minimizing any sources of suffering.

But it's not a great outcome for most of our other patients, and like a lot of things we deal with (eg, cancer-associated appetite disturbances and muscle loss) delirium is a complex phenomenon and needs complex interventions to prevent/mitigate, and perhaps the entire idea that there is a 'right drug' (or drug class) to help it was wrong all along.

For more articles by Drew Rosielle, click here. For more articles about delirium, click here. For more articles about the ICU, 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

1. Girard TD et al. Haloperidol and Ziprasidone for Treatment of Delirium in Critical Illness. N Engl J Med. 2018 Oct 22. doi: 10.1056/NEJMoa1808217.

Wednesday, October 24, 2018 by Drew Rosielle MD ·

Friday, October 5, 2018

On Football, Palliative Care, and Quality Measurement

by Arif Kamal (@arifkamalmd)

Transition into the Fall months means one thing for a boy like me from the Midwest – it’s football season. Snare drum cadences, referee whistles, and the crunch of linemen helmets were the soundtrack to many memorable evenings growing up. In football, winning requires strategy and execution, while embracing the humility that even the most exquisite gameplan, well steeped in planning and expertise, can fall flat. Though the two worlds seem unrelated, I often think of football analogies when approaching palliative care quality improvement.

Football offenses across college and professional leagues are increasingly calling the Run-Pass-Option (or RPO for short). In the RPO, a quarterback has three choices after the snap – hand the ball off to a running back, pass the ball to a wide receiver, or start running the ball himself. The overall goal is to keep defenses guessing, while matriculating the ball down the field efficiently. Based on the situation, the quarterback chooses where the ball will go. For example, if time is short and there are no timeouts, the quarterback may choose to throw a long pass to a wide receiver streaking down the sideline to both gain yards and stop the clock. If the defense is playing back, then the quarterback may run the ball himself for a big gain. Notice that all three options (throw, running back run, quarterback run) are always available, can meet the goal of moving the ball down the field, but are decided upon based on the needs of the team and the alignment of the defense.

Which bring us to healthcare quality improvement and measurement. There have been increasing discussions in all of healthcare, including within palliative care, about the spirit of quality measurement. A recent Health Affairs article highlighted the burden of quality measurement at the organization level, concluding that clinicians and staff spend 15 hours per week addressing requirements for external quality reporting. Further, the study estimated $15.4 billion spent annually by four specialties (general internists, family medicine, cardiology, orthopedics) on such activities. The authors concluded that quality measurement activities should be prioritized, so that increasing demands are not just piled on to the plates of clinicians without a strong rationale. This spirit of reducing complexity also runs in the ethos of palliative medicine, as we frequently help patients and families avoid polypharmacy complications while simplifying medication lists. But we have found complexities in quality measurement in specialty palliative care, with lists of quality measures applicable to our field numbering over 300. There’s a sense that change is needed.

Oftentimes, critiques are made about the types of quality measures that exist. In healthcare quality measurement, there are three widely-accepted categories for quality measures. This three-part framework was introduced and proliferated by Avedis Donabedian, oft-considered the father of the modern healthcare quality improvement movement. Dr. Donabedian proposed that quality measures would either evaluate structure, process, or outcomes of care (to contrast from Run-Pass-Option – RPO – I will call this SPO for short). In SPO, quality measures are categorized by their intent. For example, if a measure aims to evaluate the infrastructure, resources, or policies in place, then it is a Structural measure. If a measure aims to assess whether something was done, then it is a Process measure. Health outcome measures are the third category, and most typically thought of as “a change in a patient’s health state.” Related to health outcome measures are those thought of as outcomes, but not affecting a patient’s health. The Donabedian SPO framework does not specifically account for these, but I often think of them as “system outcomes.” Examples are patient experience or satisfaction, costs and financial toxicity, and access.

To make this clear, let’s take the example of advance care planning, the primary “procedure” of palliative care professionals. A Structural measure related to advance care planning may involve personnel (“All members of the palliative care team receive annual CE in local and state laws, legal precedence, and policies regarding advance directives, physician orders for scope of treatment, and surrogate decision-making”). This measure is Structural because it evaluates a characteristic inherent to the team or the service. A Process measure may look like, “75% of patients seen by the palliative care team have a documented advance directive by the third visit.” Such a measure looks at whether something was done. A true Outcome measure would look like, “Percent of patients with moderate to severe pain with reductions in pain scores by at least 50% within 24 hours of the first consult.” This is measuring the change in a patient’s health state.

A brief word on patient-reported outcomes (PRO). Patient-reported outcomes are “report of the statue of a patient’s health condition that comes directly from the patient.” Readers may wonder where PROs fit in the measurement framework. Importantly, PROs themselves are quite simply the method to collect data, but are not quality measures themselves. Just like electronic health record data can inform a Process measures, data from the patients’ own voice can inform any of the SPO measures. Oftentimes, when people say “PRO” what they are really referring to is “PRO-PM” (patient reported outcome performance measure). A PRO-PM is performance measure that is based on patient-reported outcome data aggregated for measurement purposes (e.g., percentage of patients receiving specialty palliative care whose depression score, as self-reported by the PHQ-9, is improved within the first eight weeks).

So let’s bring football and quality measurement back together. When a best practice is defined and supported by the evidence, the natural progression to ensure the best practice is followed is to develop a quality measure. In football, a quarterback in an RPO has three options. Similarly, to ensure a best practice is followed with quality measurement, we can develop a Structure, Process, or Outcome measure. And choosing the type of measure to develop and use requires understanding whether you want others to “have something” (Structure), “do something” (Process), or “change something” (Outcome). It’s tempting to think that all quality measures should be Outcome measures, since improving patient outcomes is what we all ultimately set out to do. But there are two reasons to should proceed with caution.

First, Outcome measures require a clear sense of how differences in outcomes (between two organizations, or between “ideal” and “actual”) will be treated. For example, if a small, rural, safety net hospital with one part-time palliative care clinicians who makes rounds every third day cannot improve the proposed measure “Percent of patients with moderate to severe pain with reductions in pain scores by at least 50% within 24 hours of the first consult,” how do we reconcile the “actual” versus an “ideal”? Such a measure – exactly applied - would doom this program for failure. So how does one “adjust” for the limitations of access to the team (every third day versus daily)? Or what if there were patient or disease factors that made meeting this measure more difficult? The concept of acknowledging that not all things are equal is called “risk adjustment.” What we want to know is if a difference between actual and ideal is expected, due to factors beyond the team’s control, how is that difference handled?

The second complicating factor with Outcome measures is accountability. If I said that the palliative care consult team’s reimbursement would be cut by 10% if a patient’s post-hospitalization satisfaction score was below the 50th percentile, what would be the reaction? Many in palliative care would argue that a patient satisfaction score is reflective of an accumulation of experiences and interactions throughout the hospitalization, of which the palliative care team was part of only a minority. So how do we attribute good or bad outcomes to individual clinicians or individual teams, when we work in complicated networks of providers, clinicians, health staff, environmental staff, and administrative professionals?

Both risk adjustment and accountability challenges should give pause in rushing towards Outcome measures. But it does not mean the challenges cannot be overcome, nor that Outcome measures are not needed in palliative care. Certainly, to remain in-step with the rest of healthcare, we will need to think about the definitions and measurement methodologies for our own Outcome measures. But we should not in that process ignore important gaps in Structure and Process measures that should also be addressed. So, to come back to my football analogy, sometimes as an offense you “take what the defense gives you,” which means to move the ball down the field balancing the chances of meeting your goal (scoring points) with the challenges ahead (putting the ball where the defense is not).

We will be discussing this and more topics related to quality in palliative care at the 4th Annual Quality Matters in Palliative Care Conference streaming online on October 11th. This conference is co-sponsored by the American Academy of Hospice and Palliative Medicine (AAHPM), Center to Advance Palliative Care (CAPC), Palliative Care Quality Network (PCQN), and Global Palliative Care Quality Alliance (GPCQA). Registration and CE are complimentary and registration is encouraged for those who can’t attend that afternoon but want to watch the recording later. For more information and to register, visit

I hope to see you there!

Arif Kamal MD, MBA, MHS (@arifkamalmd) is a youth soccer coach for his six-year old and professional beach bum. In his spare time he studies quality and workforce issues in palliative care.

Friday, October 5, 2018 by Pallimed Editor ·

Wednesday, October 3, 2018

On the Importance of Mental Health Check-Ups for Palliative Care Clinicians

by Polly Chester

As silly as this may sound to people who have never experienced a mental health issue, when one is used to a dystopian inner world, feeling happy for a consistent period of time can be a bit of a worry. For those of us who’ve had mental health concerns in the past and a baseline mental state that just allows us to lurch through life in a state of veritable chaos, calm and pleasant periods of time are a source of anxiety because we wonder if the next mental health calamity is just around the corner. One might consider psychological temperature-taking should be done just like going to your general practitioner (GP) once a year for a physical exam. However, just as many avoid the GP for fear of finding physical health problems, the same fear may prevent us from considering mental health check-ups.

Recently, I decided to treat myself to a mental health check-up because I felt like I’d been avoiding it. Since my mother died from aggressive metastatic small cell lung cancer last year, I threw myself back into life as best I could; maybe a bit harder than I’d meant to. I didn’t just go back to my previous teaching and lecturing three weeks after my mum’s death, in addition, exactly six months after that day, I also started a new clinical role – specialist palliative care social work in a local hospital. Advice from relatives and friends rang in my ears: “Be careful and make sure you access mental health support - I found that I threw myself into too much study and work after my mum died” and “It might be too soon for palliative care practice – six months is the minimum time you should wait after a death for a big change like that”.

But I did not listen, did I? It could have been my workhorse ethic or my fear of missing out (FOMO) on professional opportunities that lead me to do six months’ worth of 50-hour weeks, and predictably pay for it with a breakdown halfway through the year. I was totally exhausted, but there was an eerily calm surface on the emotional waters where I’d expected a violent storm. I’d just spent six months developing a specialist model of care for social workers in palliative care and met dozens of incarnations of my mother - people who had gone from feeling ostensibly well and completely ignorant of their cancer to a terminal diagnosis within a matter of days or weeks. I couldn’t understand why I was feeling so… unaffected. I cared deeply about every patient who came into the ward and felt immensely privileged to be of practical help in some way, but I wasn’t feeling retraumatised by seeing so much death and this came as a surprise to me. So, this is really what brought me back to the psychologist – had I accidentally turned into an unemotional sociopath during the past year?

She’s a sensible woman, my psychologist, very compassionate and warm but also not afraid to point out when I’m talking nonsense. There were two key points that came from our discussion. Firstly, that the reason I wasn’t reacting to every patient’s death in the same way I had reacted to my mother’s death was because I’d properly integrated the experience of the trauma. During the first six months of my work, as I quietly worked with grieving families I had felt a bit guilty, like I wasn’t responding to death properly – with the sadness that each one deserved. This feeling was reinforced by all the families of patients who were baffled by how the team and I could do the work that we do every day without going insane with sadness. How you manage your recovery following a grief experience really is all down to properly taking care of yourself during; feeling everything that needs to be felt, acknowledging the reality and the ubiquity of change; of endings and beginnings, and letting yourself grow around these. Grief - whether it be for a person, place, object, feeling, body part or function - doesn’t shrink or disappear – you absorb it.

With respect to assimilating profound emotional experiences, with every one, I visualise my heart muscle developing another layer. It’s not an airy-fairy, conceptual love-heart. I imagine the functional one in my chest, taking up more space than before and pulsating with even more energy with every experience extreme loss or joy because it is these contrasting experiences that give life colour, shape and texture, and build resilience. I have found these experiences have led to feelings of vitality and a more compassionate way of being with people. I still get tired; get deeply annoyed at hard-right politicians; get PMS; get anxious about having too many social activities in a weekend; get irritated when I accidentally buy a mouldy potato or have to queue for too long for my Hare Krishna takeaway food on a Friday night. But overall, these kinds of things don’t get me fired up as much as they would have a couple of years ago, and for nowhere near as long. Experiencing profound grief and loss, when it’s been processed safely and properly, can lead to great gains in emotional maturity.

Which brings me to my second key point – how I avoided coming to see her because I was a afraid I might break the spell and go back to where I was before. Through our discussions I learned one must never be afraid to revisit pain and that fear can block capacity for critical self-reflection and therefore prevent growth. I realised I wasn’t just afraid to get a mental health check-up – I was actually a bit afraid to talk about any of my past pain because I was in a better and different space now and therefore found it embarrassing; I was afraid that talking about it would re-invigorate some mental health issues, or officiate my imagined sociopathy; that I’d done the wrong thing by engaging in doing the work that I now do. This was why it was so important for me to talk about it, and to continue to talk about it. We don’t learn when we’re comfortable – we learn when we are scrambling over edge of what we’re are capable of into something new. We must never fear what we were in the past, because it’s those failures that make us who we are.

So, in summary, my mental health check-up revealed that I’m still a chronic over-thinker and hopefully a bit wiser than I once was. We’re all about as ordinary and complex as each other; just muddling through life with the resources and opportunities we’ve been bestowed by our genes and the environment. To make the most of life and to ensure you’re processing the bizarreness of it all, occasionally bouncing things off a psychologist just to keep it real is really not a bad idea.

Polly Chester, B.Soc.Wk, is a clinical palliative care social worker and academic, living and working on the Gold Coast in Australia. Up until 2018, when she took on too many different jobs at the same time, Polly used to write and publish blogs on a regular basis, and hopes to re-establish regular writing practices again in the near future. Primary research interests include implementing complex interventions in health practice and improving interprofessional practice approaches in palliative care multidisciplinary teams.

Wednesday, October 3, 2018 by Pallimed Editor ·

Monday, October 1, 2018

Challenges Faced by Blended Families at End of Life

by Lizzy Miles (@lizzymiles_MSW)

As with all my articles, I need to acknowledge that I’m still learning always.  Because of the nature of my job as a float social worker, every patient and family is new to me every day. I have to rely significantly on others’ charting and I have to make sure my own is tip top. For patients who are new to hospice, I make it a special point to learn the nuances of their family dynamic so that I can pass the information on to the care team. There is a fine line between with getting the details and not getting mired down in detail. Ultimately, the key is really paying attention to language.

These days it is common to work with families in which both the patient and spouse are on their second marriage and both have children from previous marriages. Blended families can be beautiful as they can represent a fractured family becoming whole again in a new way. Remember the Brady Bunch? Double the family, double the love.

However, when blended families have conflict at the end of life, it can complicate everything from caregiving to funeral planning.

For blended families, there are “technical” relationship identifiers and “perceived” relationship identifiers. You may wonder why you would need to clarify the difference, and there are a couple of different reasons.

1.  If there is no designated health care power of attorney (POA), state laws for surrogate decision-making focus on biological relations, and by default step-family are further down the line or even excluded. Even if there is POA, many funeral homes often depend on next-of-kin hierarchy.

2.  The step-relationship may come in to play in regards to caregiving support these family members choose to offer.

Intervention: Be cautious when referencing a relationship as it was previously identified in charting. Other clinicians don’t always make the distinction.

The clinician may have charted “Dad” when the family member is actually “stepdad.” Alternatively, the clinician may have charted “step-sister” without acknowledging the family uses the “sister” label.

I had one daughter who referred to both her dad and her stepdad as “dad.”  No other clinician understood that the primary caregiver “dad” was technically a stepdad.

Perception of “step” may vary within a family. Sometimes feelings about relationships are not mutual.

The age of the sibling might affect their use of the label. I’ve seen older children from the first marriage identify younger step-siblings with the “step” label, while younger children only ever knew and talked about the older ones as “siblings.”

On the subject of grandchildren, a daughter-in-law once “assisted” my conversation with a patient by asking how many grandchildren she had. I never ask the question because numbers challenge the memory. The patient gave a number that only reflected her biological grandchildren which angered the daughter-in-law who had children from a previous marriage. I then was a helpless witness to a 20 minute argument in which the patient was adamant that the step-grandchildren didn’t “count” and the daughter-in-law was visibly upset.

A step-mom may consider her step-children as “children” but if the children are still connected to their biological mom, there is a possibility that the feeling is not mutual.

Intervention: In your own documentation, be clear and distinct with family preferences for labels. 
For example, you could say something like, “The youngest two are technically step-sisters, but family members do not use the “step” identification.”

Be sure to also chart any sensitive areas on the topic, as with the example about the grandmother.

Intervention: Use language the way they do. 
If you’re talking to someone who clearly delineates within the family, reference “step-sister” or better, yet, use the person’s name. If a child thinks of their stepdad as “dad” then use the word “dad.”

One cannot make assumptions about how a person will be a caregiver based on their familial relationship to the patient. In a best case scenario, we would see the whole family supporting one another and equally sharing the burden. Unfortunately this is not always the case. A few years ago I wrote about how to navigate working with a reluctant caregiver. At the time, though, the dynamics of blended families weren’t completely on my radar.

One blended family challenge is the situation in which a patient is part of a couple that is on their second marriage and patient and caregiver each have children from prior marriages. You could have a combined total of ten children and still no one helping the spouse. The children of the caregiver don’t feel an affinity towards the patient, and the children of the patient do not feel that they need to be the ones to relieve the caregiver. These may seem like stereotypes. They are, and they do not apply to all blended families. This article, however, is addressing situations in which the family system is not working smoothly and is an attempt to explore how we, as professionals, approach these situations.

Alternatively, in some blended family situations, it is one or more of the children who are the primary caregivers and the second spouse is the one who is the reluctant caregiver.
While you want to have an awareness of family dynamics, you do not want to have a position on them. It would be very easy to side with the caregiver who is involved and complaining about others who are not involved. But you don’t know the history of the family and their relationships.

Intervention: First of all, stay out of the mud slinging
Provide supportive listening, but do not take sides. Who is right or wrong is not our place to say.
Don't say, “What a jerk!” Do say, “It sounds like you’re disappointed that he is not more involved in the care.” Document objectively any family dynamics that could affect care.

Intervention: Be solution focused
While we want to provide supportive listening to a family member who is frustrated with a caregiving situation, we also need to redirect focus to the reality of the situation at hand and what we can actually do to ensure the patient is getting good care and the caregiver is supported.

Intervention: Complete HCPOA
If the patient is still oriented and does not yet have a health care power of attorney, encourage them to complete this document. Ask them who they want their primary decision-maker to be. Do not assume it will be their spouse. Be clear with patient and family that without the document, though, the spouse is the primary decision maker in the event patient is no longer able to speak for themselves. When a patient has only been married a few years or less and the children are well into middle age, the spouse’s authority can sometimes be a point of conflict.

Intervention: Have a family meeting focused on goals of care
If family members are involved but disagree on care, encourage everyone to get together at the same time to discuss goals of care. This should be centered on what the patient wants. In an ideal world, the meeting would involve the patient, the whole hospice team and all involved family members. For families providing care at home, at a minimum, the nurse and social worker should both be there. There might be medical questions for the nurse to answer, and social workers have more training in group dynamics and facilitation.

Intervention: Assist with communication and language
Assist the primary caregiver with phrases that he or she can use to ask for help. Sometimes the family can get so caught up in the dynamics of a relationship that they don’t know how to ask for what they need. They may have a habit of accusing someone of not being around enough, but complaining in itself isn’t effective.

I always tell caregivers that it is easier for others to agree to help them if they are specific in their request. I would work with them to find out what their biggest needs are and then help them phrase the “ask.”   I might suggest they say something like, “It would be helpful to have a weekly two hour block of time that I can count on to run errands. I don’t feel comfortable leaving [patient] alone. Is there a time when you might be able to come over to relieve me?”

Advice for you: Help with what you can, let go of the rest
As you are working with challenging families, you may find yourself frustrated by situations that you can’t fix. If this happens and you find yourself having an adverse reaction to a family situation, take a step back to explore your response.

For more articles by Lizzy Miles, click here. For more articles about communication, click here. For more articles about social work, click here.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. She is currently funding her fourth Kickstarter campaign Hora Fugit which seeks to send willing participants gentle postcard reminders of their mortality. You can find her on Twitter @LizzyMiles_MSW.

Photos via Unsplash- Ink by rawpixel; Dad's Keys by Hope House Press; Mugs by Worthy of Elegance

Monday, October 1, 2018 by Lizzy Miles ·

Friday, September 28, 2018

The Power of a Pause

by Kayla Sheehan (@kksheehan)

October TW, Dizon ZB, Arnold RM, Rosenberg AR. Characteristics of Physician Empathetic Statements During Pediatric Intensive Care Conferences With Family Members: A Qualitative Study. JAMA Network Open. 2018;1(3):e180351. doi:10.1001/jamanetworkopen.2018.0351

Ask any patient what qualities they desire in a physician, and empathy will almost always make the list. A physician’s ability to demonstrate empathy has been shown to significantly impact patient outcomes1, increase patient satisfaction2, and raise physician “compassion satisfaction,” which may hinder burnout (3). Though much debate surrounds empathy’s teachability, learning how and when to make empathetic statements is a crucial aspect of physician training. Many of us struggle with finding the right thing to say, but a recent open access study published in JAMA Network Open shows there may be more power in pauses made after empathetic statements than in the words themselves.

The study recorded 68 pediatric intensive care unit conferences over four years. Transcripts of every meeting were made, and empathetic statements were noted using the infamous NURSE criteria (naming, understanding, respecting, supporting, exploring). “Missed opportunities” to express empathy were noted as well. Empathetic statements were placed into two categories, “buried” and “unburied.” A buried statement was one in which the physician expressed empathy, but did not allow time for the family to respond. This most commonly occurred with the physician immediately segueing into clinical jargon, but was also counted as buried if another member of the team interrupted, or if the physician finished the statement with a closed-ended question.

Transcript analysis showed that physicians are fairly good at identifying when to express empathy, taking advantage of 74% of the opportunities analyzers identified. However, almost 40% of these statements were buried, and “medical talk” accounted for the vast majority of buried statements (95%). Interestingly, non-physician team members (typically a social worker or nurse) spoke only 5% of the time, but when they offered empathy, they did so unburied 87% of the time, further demonstrating the importance of a multi-disciplinary team in fully supporting patients and their families.

Physicians have a wealth of medical knowledge to share, but timing is paramount, and tacking jargon onto the end of a well-intentioned empathetic statement may prevent patients and families from even recognizing the empathetic effort at all. In October’s study, when physicians made unburied empathetic statements, families were 18 times more likely to respond with additional information, to express their fears, and to discuss their goals. Clear communication is an obvious cornerstone of the physician-family relationship, and while buried empathetic statements may be better than no expressions of empathy at all, they may leave families with a feeling of being unheard and ignored.

Though a busy clinician may not feel they have the time to open the Pandora’s box of family concerns and fears, investing time in “a pause” may pay dividends for all parties involved. For physicians, better communication skills have been shown to decrease instances of burnout, lower rates malpractice suits, and raise patient satisfaction scores4. Meanwhile, the family leaves these conversations feeling heard and understood, and the patient receives care tailored to them, with every fear, concern, and hope kept in mind.

If, as cellist Yo-Yo Ma would assert, “music happens between the notes,” perhaps the heart of medicine lives in the pause.

More Pallimed posts from Kayla Sheehan can be found here. More journal article reviews can be found here. More posts on communication can be found here.

Kayla Sheehan is a third-year medical student at California Northstate University. She enjoys singing, sharp cheddar, and long walks with her Australian Shepherd, Posey.


1) Kim SS, Kaplowitz S, Johnston MV. The effects of physician empathy on patient satisfaction and compliance. Eval Health Prof. 2004 Sep;27(3):237-51. PubMed PMID: 15312283.

2) Pollak KI, Alexander SC, Tulsky JA, Lyna P, Coffman CJ, Dolor RJ, Gulbrandsen P, Ostbye T. Physician empathy and listening: associations with patient satisfaction and autonomy. J Am Board Fam Med. 2011 Nov-Dec;24(6):665-72. doi:10.3122/jabfm.2011.06.110025. PubMed PMID: 22086809;

3) Gleichgerrcht E, Decety J (2013) Empathy in Clinical Practice: How Individual Dispositions, Gender, and Experience Moderate Empathic Concern, Burnout, and Emotional Distress in Physicians. PLoS ONE 8(4): e61526.

4) Boissy, A., Windover, A.K., Bokar, D. et al. Communication Skills Training for Physicians Improves Patient Satisfaction. J Gen Intern Med (2016) 31: 755.

Altmetric for this study: October TW, Dizon ZB, Arnold RM, Rosenberg AR. Characteristics of Physician Empathetic Statements During Pediatric Intensive Care Conferences With Family Members: A Qualitative Study. JAMA Network Open. 2018;1(3):e180351. doi:10.1001/jamanetworkopen.2018.0351

Friday, September 28, 2018 by Pallimed Editor ·

Wednesday, September 26, 2018

Conference Review: PainWeek 2018

by Rabia Atayee (@RabiaAtayee)

For the past 10 years, in addition to several conferences more specific to palliative and hospice care, I have attended PainWeek (#PainWeek). I find great value in attending PainWeek as it strengthens my palliative practices through interactions expanding beyond traditional palliative care trained disciplines. With an average of 2,000+ attendees, there is an opportunity to interact with pain anesthesiologists, addiction specialists, and physical therapists trained in pain interventions among other specialists. During one session, I was sitting next to a JD who is preparing for a prescription drug abuse case. There is also a nice representation of exploring the psychosocial components of pain with psychologists and psychiatrists in attendance. I think it would be amazing to have the additional participation from palliative physicians, RN/NPs, LCSWs, Chaplains, and PharmDs.

Here are a few examples of presentations I enjoyed at this years’ PainWeek: “Electroceuticals: The Future of Interventional Pain Management?”, “The Carrot and the Stick: Values-Based Interdisciplinary Pain Management”, “Brain-Based Biomarkers for Pain: Objective Measures of Pain or a Journey Down the Rabbit Hole?”, “Being Held Hostage? Use Psychological Strategies for Resolving Difficult Patient Behaviors”, “Dangerous Liaisons: Regimens, Regimes, and Rapprochements”, “The Emperor's New Clothes: Multimodel Engagement & Improving Access to Care”, “The Psychology Toolbox: Evidence-Based Treatments for Pain Management”.

I always feel enlightened and energized after coming home from PainWeek. I come away with a comprehensive scope of the current pain and symptom management climate. The combination of PainWeek and its location in Las Vegas also allows your creative mind to flow freely. Being exposed to approaches to pain management allows for continued improvements in how we can deliver patient care, conduct research and provide education. In fact, as a founding member of the Society of Palliative Care Pharmacists (SPCP), I was one of a handful of pharmacists who enjoyed a buffet during PainWeek 2015, when the idea and discussion of creating SPCP was initiated.

But don’t just take my word for it. Dr. Mary Lynn McPherson who edutains (educates and entertains) at several palliative care and hospice conferences year after year has been attending PainWeek since its inception 12 years ago. Here’s why she attends and presents at PainWeek. “We have pretty good evidence that nobody is getting out of here alive! People with a serious or advanced illness, more often than not, experience pain, in addition to a wide range of non-pain symptoms. Caring for this fragile patient population is the responsibility of ALL practitioners – inpatient, outpatient, acute care, chronic care – we all need to be skilled in providing excellent palliative care. PainWeek offers at least one full day of training in palliative care to provide practitioners an opportunity to hone these skills.”

Dr. Frank Ferris was introduced to PainWeek by his colleague, Dr. Jessica Geiger-Hayes, who is a palliative care trained pharmacist. Drs. Ferris and Geiger-Hayes have co-presented at PainWeek the last 2 years and continue to attend and present at PainWeek. “Pain week is a wonderful opportunity for hospice and palliative care clinicians to advance and review their pain-management skills with experts in both the non-pharmacological and pharmacological management of both acute and chronic pain.”

If you are a palliative care or hospice practitioner and are looking to attend a new conference, I advocate that you come to PainWeek. PainWeek usually occurs the week of Labor Day in Las Vegas. And although it is called PainWeek it is usually pain-free, unless you have had too much fun in Vegas!

Rabia Atayee, PharmD, BCPS, APh is a palliative care pharmacist at the University of California (UC), San Diego Health and professor and associate dean of admissions and outreach at UC San Diego Skaggs School of Pharmacy. When she is not juggling all the professional roles that she is passionate about she embraces what she considers to be her most important role, mother to her 8 & 6-year-old kids.

Photo credit: Courtesy of Rabia Atayee

Wednesday, September 26, 2018 by Pallimed Editor ·

Monday, September 24, 2018

Alcohol Pad = Aromatherapy = Nausea Relief?

by Bob Arnold (@rabob)

In general, I am a cynic and a nihilist. That means when reviewing the literature, I find most glasses half empty rather than half full (OK, probably this is true in life, but that is TMI). I am very unlikely to try a new treatment based on one study.

For every rule, however, there is an exception. I am completely enthralled with aromatherapy and thus found an article in the Annals of Emergency Medicine by Beadle on isopropyl alcohol nasal inhalation for nausea in the emergency department. It was a randomized controlled trial which made it swoon-worthy. The only problem was it was a placebo trial and so my friend(s) pooh-poohed the article. I was thrilled to see the follow-up, double-blind RTC article by April: “Aromatherapy Versus Oral Ondansetron for Antiemetic Therapy Among Adult Emergency Department Patients: A Randomized Controlled Trial,” in February 2018, again in the Annals of Emergency Medicine. The fact that it was positive means that anyone who I talk to has to hear about it (as well as how they must watch Nanette and how excited I am about the new season of The Good Place).

The aim of the 2018 study was to compare nasally inhaled isopropyl alcohol versus oral ondansetron (aka Zofran) for the treatment of nausea among emergency medicine patients. They looked at 120 adult patients with nausea or vomiting who did not require an IV. The patients who were randomized into the three groups: (1) isopropyl alcohol plus 4 mg of oral ondansetron; (2) isopropyl alcohol plus oral placebo; (3) inhale saline plus 4 mg of ondansetron. (They did not do a double placebo because there is placebo-controlled data that both drugs work). The isopropyl alcohol was a commercially prepared, medical pad placed 1-2 cm from the patient’s nose and the patient was instructed to nasally breathe to inhale the isopropyl alcohol. Measurements were made at 10, 20, 30, and 60 minutes and then hourly until disposition using a 0-10 cm visual, analog scale.

Mean nausea scores decreased 30 mm in the alcohol and ondansetron group, 32 mg in the alcohol placebo group, and 9 mm in the saline ondansetron group (this was statistically different). Patients in the isopropyl alcohol groups also had better nausea control at the time of discharge and higher satisfaction with no adverse events.

On to the evaluation questions:

Was this study valid?

The assignment of patients to treatment was evenly randomized. All of the patients who entered the study were accounted for at the conclusion and there was complete follow-up. They asked the patients and clinicians if they could tell what group they were in (they could not). The patients seemed to be treated in an identical manner. Rescue antiemetics were less common in the groups who got the isopropyl alcohol versus the ondansetron alone.

Were the results clinically important?

The investigators used 20 mm as a clinically significant result, which seemed to be reasonable. They did not make any adjustment for compounding variables, but I really was not sure what the confounding variables should be; this seemed reasonable.

The problem with the study is the question whether the results will help me care for my patients. My patients are not young, relatively, healthy individuals with viral illnesses who do not need an IV. That is unclear and if I am being my normal, cynical self, I probably should just move on!

On the other hand, given that this trial has absolutely no side effects and I can carry alcohol swabs around in my coat, I stick with my love of this article. I mean seriously, why wouldn’t you try this in the hospital on patients with nausea and vomiting.

So, I am going to urge you to watch Nanette, the Good Place and carry around isopropyl alcohol swabs in your pocket on rounds. Tell me if you think I am wrong!

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

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


Beadle KL, Helbling AR, Love SL, April MD, Hunger CJ. Isopropyl Alcohol Nasal Inhalation for Nausea in the Emergency Department: A Randomized Controlled Trial. Ann of Emergency Med. 206: 68 (1):1-10

Hines S, Steels E, Chang A, et al. Aromatherapy for treatment of postoperative nausea and vomiting. Cochrane Database Syst Rev. 2012;(4):CD007598.

April MD, Oliver JJ, Davis WT, Ong D, Simon EM, Ng PC, Hunter CJ. Aromatherapy Versus Oral Ondansetron for Antiemetic Therapy Among Adult Emergency Department Patients: A Randomized Controlled Trial. Ann of Emergency Med.

Monday, September 24, 2018 by Pallimed Editor ·

Sunday, September 23, 2018

Building Resilience through Contemplative Care

by Ann Allegre

As professionals in end-of-life care, our responsibilities can seem overwhelming. As with other clinicians, we have burdens of too many patients to see, too much time spent in documenting, and hassles with insurance companies. In hospice and palliative medicine, we are impacted by the additional challenges of seeing so much suffering, grief and tragedy. While we have good tools to address most types of physical suffering, there is much suffering among our patients and their families that does not respond to medical interventions. After I had been working full-time in hospice and palliative care for a few years, I felt that I was burning out. In 2003, I took training in a contemplative approach to care, which stabilized me and allowed my career to flourish. I gained new tools for addressing the suffering that I could not relieve with medications, and I learned how to have more compassion for myself.

Dr. Balfour Mount said “Our effectiveness as healers is determined by our openness, self-awareness and capacity for radical presence.” These factors describe the contemplative approach. It is about how we are present to one another. Presence is developed by applying the methods of meditation to help us deeply connect with our essence, the best part of our being. We bring this non-judging openness and kindness into our interactions with others. More than anything, what helps someone who is suffering is how we are.

The contemplative approach helps to free us of our ordinary approach, which is based on self-judgment and hopes and fears about how I am doing in this situation. We learn to be present with ourselves so that we can be present with others. We each have an innate capacity for genuine compassion, which can be cultivated and strengthened.

What does training in contemplative care offer? Contemplative methods for deepening compassion and self-healing reduce stress levels and bring a sense of joy and confidence to our work. We can also learn methods of contemplative listening and communication, so that we can truly connect with people in crisis and create a healing environment. It is a practical approach that can be immediately applied in encounters with patients and families, as well as interactions with our colleagues and personal family and friends.

An experienced hospice nurse from California took our online course on Cultivating Compassionate Presence, part of the Authentic Presence certificate course in end-of-life care, this spring. She describes the effects of the training this way: “The Compassionate Presence work has been amazing. I am uncovering “dark sides”, and find I am building more patience and understanding for the struggles of others. I have experienced challenging work situations that using my new tools have brought deeper understanding. Much of my team are surprised that I feel that “I“ want a course on Compassion, as they see me as a very sensitive person. I can only tell them that this process brings a depth of “Beingness” that words cannot express.”

After my own initial encounter with a contemplative approach to care in 2003, I sought further training. I have been privileged to share this work with others as an instructor for the Spiritual Care Programme, an international training program founded more than 30 years ago that has trained over 30,000 healthcare professionals worldwide. Skills of compassion and presence are needed more than ever in this difficult world. Whatever avenue you choose, I hope that each of you will find your way to this type of peace and fulfillment to your work.

Ann Allegre, MD, FAAHPM is a Senior Educator for the Spiritual Care Programme and a retired hospice and palliative care physician. She may be reached at ann.allegre [at]

Image credit: Photo by Jiroe on Unsplash

Sunday, September 23, 2018 by Pallimed Editor ·

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