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by Drew Rosielle (@drosielle)

A Series of Observations on Opioids By a Palliative Doc Who Prescribes A Lot of Opioids But Also Has Questions.

This is the 4th post in a series about opioids, with a focus on how my thinking about opioids has changed over the years. See also:

Part 1 – Introduction, General Disclaimers, Hand-Wringing, and a Hand-Crafted Graph.

Part 2 – We Were Wrong 20 years Ago, Our Current Response to the Opioid Crisis is Wrong, But We Should Still Be Helping Most of our Long-Term Patients Reduce Their Opioid Doses

Part 3 – Opioids Have Ceiling Effects, High-Doses are Rarely Therapeutic, and Another Hand-Crafted Graph


This is Part 4 – Everything We Were Taught About High Doses Was Wrong, And The Same Hand-Crafted Graph

I no longer consider opioid dosing and conversions as a linear matter. That is, my approach to both opioid dose adjustments and rotations changes markedly the higher the dose of opioid a patient is on.

Most of us have long been familiar with the idea that methadone’s ‘equianalgesic’ relationship to other opioids is non-linear. Ie, the higher the dose of another opioid you’re on, methadone becomes relatively more potent (you use relatively less methadone) – the equianalgesic ratio changes.

I now believe this is true of all opioids both with conversions and with titrations, and I imagine a lot of you believe this too.

To give you an example: if someone is on 4 mg of oral hydromorphone PRN and has severe uncontrolled pain, there’s a decent chance I’d increase them to 8 mg if they’re otherwise doing ok, and if I did I wouldn’t spend much time worrying about that decision. If someone is on 40 mg of oral hydromorphone PRN – while what I would end up doing is a highly individualized decision, let me tell you I would 100% think twice before increasing them to 80 mg. In fact, I’d be extraordinarily unlikely to do that, whereas I just wouldn’t hesitate to double a similar patient from 4 to 8 mg. Ie, despite all the textbooks saying we should increase opioids in percentile increments I don’t believe that once I’m working with high doses. It Is Not Linear.

And I bet a lot a lot of you reading this would agree – you’d, at least, hesitate. And I’ve been asking myself why, and again I think part of it is my recognition that very high doses are rarely effective, or at the very least changes at the very high range of opioid dosing are far less effective than in the low range (see my last post and its lovely hand-made graphic which I’m reproducing here), and that the benefit:hazard ratio of escalating at very high doses is far lower than with low dose opioids. (About that benefit: hazard ratio – for well monitored, highly opioid tolerant patients I’m not arguing that the risk of harmful overdose is very high for these patients, in my experience it isn’t and opioid tolerance is a truly remarkable thing. I’m more arguing that the benefit to patients from dose escalations for patients already in the very high range are very small, and much smaller for the typical patient when you, say, increase their morphine ER from 15 mg to 30 mg).



Regardless of the reasons underlying it, my point here is that I do, and I think most people do, think of these ratios, and these rules of dose titration, differently at high doses than at lower/moderate doses, although I’ve never yet read that anywhere, and I don’t really understand why because my impression is that this is common practice.

Same with drug rotation.

There’s been a lot of speculation with methadone – why it seems to be more potent the higher the baseline opioid someone is on and some of the speculation is that patients are hyperalgesic from the baseline opioid, and since methadone perhaps directly counteracts some of that hyperalgesia or at the very least doesn’t contribute to it much, it can be surprisingly potent. Eg, we can get away with such small doses of methadone sometimes because a patient’s baseline opioid dose was largely there just to overcome the hyperalgesia from that very baseline opioid. If that’s the case, then you could also imagine a scenario where the same phenomenon would obtain, at least to an extent, with rotating away from any opioid at a very high dose, not just methadone. To an extent: other commonly used opioids don’t theoretically counteract tolerance and hyperalgesia in the way we believe methadone does, but nonetheless it’s a sort of ‘partial-cross tolerance’ phenomenon. Ie, going from, say, high dose hydromorphone to morphine, perhaps you don’t have as much hyperalgesia initially from that morphine so you can get away with lower relative morphine dose. I need to stress this is speculation, I do not understand the mechanism here, but am more observing that the speculative explanation we have about why it seems to work for methadone could partially apply to any opioid rotation.

I don’t think any of this is extraordinary, however I’ll also add that I haven’t really seen any of this in a textbook, or as an asterix in opioid conversion tables (with the exception of methadone).

Consider this example: I remember every pretty early on in my career, having people on something like 10 mg/hr continuous hydromorphone infusions and needing to transition them off the IVs and doing the math and feeling the acid and bile rise to the back of my mouth. Eg 10 mg/hr = 240 mg/24 h = 4800 mg OME (by most equianalgesic tables). Even if you reduced ‘for incomplete cross tolerance’ by a whopping 75% (which, I’ll note, is more than most textbooks ever mention) that would still be putting someone on, eg, MSContin 600 mg twice a day. Like, whoa. Like, would any of you do that? Even if you use the so-called ‘new’ ratios based off the excellent MD Anderson study looking at IV hydromorphone to PO med ratios, that suggests a ratio of 1 mg hydromorphone : 10 mg PO morphine, which would be 2400 mg of morphine a day. And, note, that study calculated the ratio based on the final dose of what the patient actually ended up on, so if we use this as a conversion ratio the implication is you don’t need to account further for incomplete cross tolerance, which would suggest in fact we put this patient on 1200 mg of morphine ER bid.

LOL/puke.

(Now that I prescribe methadone…we didn’t prescribe it much where I started my career…I just put them on something like 10 mg tid of methadone and continue to be delighted that *most* of the time it goes just fine.)

But here’s the point: even before I routinely used methadone in these situations, I still ended up putting people on far lower doses than any textbook/consensus guidelines would recommend, maybe something like 120 mg tid of morphine ER and was surprised at how it went ok much of the time. Patients were ok (not perfect, adjustments were needed, but the rotation was not a catastrophe) with what is technically a massive dose reduction.

Why can we ‘get away’ with stuff like this? We can speculate all we want why but we don’t know, but I’m still going to make an empirical claim that the so-called equianalgesic ratios don’t apply at high doses.

They are worse than worthless, they are dangerous.

When I talk with people around the country about this, most people I talk with are doing just what I describe above. So, I don’t think I’m describing a particularly novel or extraordinary clinical approach.

What I’m more interested in is why we still talk about methadone’s non-linear conversion curve as something unique, when it isn’t (methadone’s curve is probably more pronounced than with other opioids, but the fact that it has a curve is not). By acting like methadone’s all fancy and unique, and by putting out equianalgesic charts and dose adjustment rules (eg the 25-50-100% rule) that don’t qualify that perhaps none of this applies to patients on very high doses, I think we are promoting unsafe practices. To an extent, most patients on very high doses are being cared for by specialists, and most of us know what we’re doing, so we have that safety buffer, but that doesn’t seem like enough

Most fellowship years, a few months into it, a fellow comes to me as they are figuring this out, and I have to break the news to them that most of us throw those tables out for patients on very high doses, and it’s kind of like breaking bad news to them, and I start telling them the truth, is that I sometimes don’t even bother doing the math when people are on really high doses, and half the time just ask myself Is there any reason not to put this patient on 10 mg of methadone tid? and nothing else.

Part 1 – Introduction, General Disclaimers, Hand-Wringing, and a Hand-Crafted Graph.
Part 2 – We Were Wrong 20 years Ago, Our Current Response to the Opioid Crisis is Wrong, But We Should Still Be Helping Most of our Long-Term Patients Reduce Their Opioid Doses
Part 3 – Opioids Have Ceiling Effects, High-Doses are Rarely Therapeutic, and Another Hand-Crafted Graph
Part 4 – Everything We Were Taught About High Doses Was Wrong, And The Same Hand-Crafted Graph
Part 5 – Why Do We Lump The Non-Cancer Pain Syndromes Together?
Part 6 - Why Is Cancer Pain So Special?

For more Pallimed posts about opioids.
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.

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by Drew Rosielle (@drosielle)

A Series of Observations on Opioids By a Palliative Doc Who Prescribes A Lot of Opioids But Also Has Questions.

This is the 3rd post in a series about opioid, with a focus on how my thinking about opioids has changed over the years. See also:

Part 1 – Introduction, General Disclaimers, Hand-Wringing, and a Hand-Crafted Graph.

Part 2 – We Were Wrong 20 years Ago, Our Current Response to the Opioid Crisis is Wrong, But We Should Still Be Helping Most of our Long-Term Patients Reduce Their Opioid Doses

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This is Part 3 – Opioids Have Ceiling Effects, High-Doses are Rarely Therapeutic, and Another Hand-Crafted Graph

I believed, and was taught, opioids had no intrinsic ceiling effect, and didn't think there was much difference between someone being on 100 mg of morphine a day or 1000 mg. I wish this was the case, but the number of patients I can recall the last 20 years who were on very high opioid doses who were doing 'great' (had excellent pain relief leading to important functional improvements and minimal side effects) is minimal (but not zero, mind you). Like, less than 5% of patients I’ve placed on very high doses. (I’ll be the first to admit I don’t have an exact definition of what that is, I don’t think that’s possible, but generally I’m talking about many hundreds of morphine milligram equivalents a day.) Most patients remained in terrible pain and had significant, ongoing disability despite the high doses (and undoubtedly for some of them because of the high doses). I’d increase someone’s dose, they’d report they’d feel better, but within a few weeks or months they’d continue to report daily, severe pain, and function would not have improved. I saw this pattern again and again. They weren’t overdosing, most of them were fine from a safety standpoint, they just weren’t helped by me pushing their doses into the very high range. As I look back on this, it’s bizarre to me I didn’t see more clearly in the past just how poorly most of my patients on high doses were doing. How I ignored that little voice inside of me which said, “Drew, they’re already on many hundreds of milligrams a day, they continue to report daily, severe pain…opioids are not helping them anymore.”

So much so that I’ve mostly stopped prescribing opioids, long-term, in those ranges, outside of patients who are dying and the care goals are really centered around alleviating suffering in those final days/weeks. (I use those doses short term during hospitalizations for pain crises.)

I should note here that I don’t think it’s helpful to calculate ‘morphine equivalents’ for someone on methadone for pain. I know people do it, but I don’t, and I personally think it’s a folly, it’s too much comparing apples and oranges, and the fact we know how to convert someone from methadone to a ‘typical’ opioid without killing them is a different thing than being able to speak confidently along the lines of “40 mg a day of oral methadone is equivalent to X mg a day of oral morphine.” Like, does anyone think they’ve got a good grip on that (if you do, please comment)? That’s not a question I’ve asked myself for years now because I don’t think it has an answer, and I think it’s a different question than “what is a safe and reasonable dose of oral morphine to convert someone to a day who is on 40 mg of methadone daily.” Part of this is because I think a lot of what’s pernicious about commonly used non-methadone opioids really comes out at higher doses (see my next post in this series), and I think those pernicious phenomena are really muted for methadone, and as I think about patients I have different categories in my head for patients on, saying, hundreds of milligrams of morphine a day who’s doing poorly (not getting good pain relief), and someone who’s on quite a high dose of methadone who’s not getting good pain relief. To me, those are different situations, whereas there’s not much of a difference in my brain’s way of categorizing the world between someone doing poorly on very high dose morphine and oxycodone, for instance.



So, I believe patients absolutely have a therapeutic ceiling effect with opioids, and at doses that are lower than I realized years ago, although everyone’s ceiling is different, but that should not be much of a surprise.

Part 1 – Introduction, General Disclaimers, Hand-Wringing, and a Hand-Crafted Graph.
Part 2 – We Were Wrong 20 years Ago, Our Current Response to the Opioid Crisis is Wrong, But We Should Still Be Helping Most of our Long-Term Patients Reduce Their Opioid Doses
Part 3 – Opioids Have Ceiling Effects, High-Doses are Rarely Therapeutic, and Another Hand-Crafted Graph

For more Pallimed posts about opioids.
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.

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by Drew Rosielle (@drosielle)

This is the second in a series of several posts about many aspects of my current thinking about opioids.

The first post is here: Part 1 – Introduction, General Disclaimers, Hand-Wringing, and a Hand-Crafted Graph.

Over-prescribing fueled the current drug overdose epidemic, and many of us who thought we were stamping out needless suffering contributed to the epidemic.

A lot of what I read and believed about opioids early on in my career was wrong.

I’m old enough to remember those heady days in which there was a pretty large and ‘successful’ movement in American medicine to greatly liberalize opioid use for all sorts of pain syndromes...pain as the 5th vital sign, discussions of there being a tort for undertreating pain, etc. In my own way, I was part of the movement, although I was trained at the beginning of the end of the movement.

There was a utopian feeling in the air at the time: pain is a terrible scourge, it’s under-diagnosed and under-treated, it’s this huge cause of all this disability and needless suffering, and liberalizing the availability of opioids would be a key intervention to transform all these suffering people’s lives for the better.

We were wrong.

Opioid prescribing and availability did increase markedly, but population levels of pain and disability didn’t improve. Most people’s lives were not transformed for the better, and at least some were ruined via iatrogenic opioid use disorder. How many were ruined due to increased opioid prescribing for chronic pain is really tough to know. But undoubtedly there was a marked increase in community exposure to prescription opioids (obtained both legally and illegally) from 2000-2010 which was key in fueling the current drug overdose epidemic, and increased prescribing was an important enabler of all this.

And while I very much believe that, I still observe that we actually have very little helpful data about nearly anything to do with this topic, despite the fact that everyone (including me) has strong opinions about it.

Even questions like 'How many patients with chronic noncancer pain who are prescribed opioids also have an opioid use disorder?' has no clear answer (let alone the associated-but-different question of ‘How many patients with chronic noncancer pain who are prescribed opioids acquire an opioid use disorder from those opioids?’). Estimates are from 3-40%, but the data are heterogeneous and difficult to interpret, which is a polite way of saying the data are a total mess. Eg, most studies are single institution studies, some studies have rigorous definitions of OUD, some which look at ‘aberrancy’ which is not an adequate proxy of opioid use disorder, some studies clearly involve a chronic pain population, some which look at anyone who has received an opioid prescriptions which is not the same thing as a chronic pain population – the data are a total, flaming, mess. See, eg, J Med Toxicol 2012 PMC: 3550262, or Subst Abuse Treat Prev Policy 2017 PMID: 28810899).

There are better population-level data on rates of overdoses in patients who are prescribed opioids as outpatients. The big story there is that while risk of overdose does increase more or less linearly with the amount and duration of opioid prescribing, the absolute risk goes from – on a population level – miniscule to tiny as prescription opioid ‘exposure’ goes up. In one of the better studies on this, which looked at state-wide North Carolina data, the risk of fatal overdose was 0.022% per year for all comers (anyone who received an opioid prescription). For those in the highest tier of prescription opioid exposure, the rate of fatal opioid dose remained tiny: 80 per 10,000 person-years (Pain Med 2016 doi:10.1111/pme.12907). That’s still too many, but I think it helps give nuance to the apparent Extreme Urgency some policy makers and insurers are putting on patients/prescribers to rapidly push a whole bunch of people off of chronic opioid therapy. You get a sense that some policy makers think We Must Do This Or They All Will Die. This is totally, demonstrably, false.

It’s illuminating, for instance, to look at Krebs JAMA 2018. This was a 12 month practical randomized controlled trial of opioids in a narrow patient population – osteoarthritis – showing that opioids generally weren’t effective and had opioid side effects. A lot could be said about Krebs 2018, but it was at least a reasonably lengthy study period, and helpfully showed that opioids weren’t generally effective for osteoarthritis in this population over a pretty long time. Although, importantly, the study excluded patients who had received any opioids, so all these patients may have been pre-selected to not do well with/want opioids anyway. Regardless, and relevant to the larger discussion of the opioid crisis, it also importantly showed that while the patients receiving opioids had common opioid side effects, they did not acquire opioid use disorders, nor die at a higher rate than the non-opioid users. So while Krebs 2018 has been used very loudly by some to prove opioids are ineffective for ‘chronic pain’, it’s often missed that it could just as easily be used to emphasize that prescribing opioids carefully to risk-screened patients then monitoring them closely over the long-term is actually quite safe and in fact not a driver of the opioid overdose crisis.

All this being said, opioid prescribing in the US went up massively in the 1990s and 2000s, and I myself don’t have any doubt that lead to broadening the population-level exposure to opioids and fueled the current crisis. All of us who prescribed are implicated in that in some way.




As much as I believe the above to be true, opioid prescribing has been falling since ~2010, as drug overdose deaths have continued to sky-rocket due to a resurgence of heroin and now illegally manufactured fentanyl analogues. And current policies which have essentially forced (encouraged? forcibly encouraged?) clinicians to taper patients off opioids despite many of those patients demonstrating long-term safety with chronic opioid therapy is barbaric, harmful, & shameful, and I’m proud of the efforts of many in our field and organized medicine to push back against it. See for instance Chad Kollas’ (@ChadDKollas, see also his Pallimed posts here and here) and others’ work at AAHPM, the AMA and elsewhere, and the coalition who put together this open letter. Read the letter if you haven’t, it’s clear headed and right about everything, and I’m glad that there are at least signs the CDC is listening, which is not to say that the semi-literate insurance representatives who cannot read a prescription indication line which says: “chronic neoplasm related pain” and who refuse to allow my terminal cancer patients refills without hours of wasted work, are listening…yet.

And, just to wallow in my anger about all this a bit, it’s become really crystal clear to me that there’s a large group of people out there who are enforcing a version of the CDC guidelines that just don’t exist. (In case you’re not familiar with the guidelines: 1) they are aimed at primary care clinicians not pain specialists, and they can be quite easily summarized as saying 2) chronic opioid therapy, particularly high-dose opioid therapy, for chronic noncancer pain should be used rarely, as a last resort, and only undertaken with clear informed consent of the patient and with close attention to the safety of the patient.) Like pain doctors telling their patients who they’ve maintained on chronic opioids for years that the CDC says they can’t do it anymore and have to taper them (I hear this all the time). Or a pain doctor at a peer review of a specialist physician accused of overprescribing stating that the CDC guidelines state that opioids can’t be used for chronic pain (100% true story, I was part of that peer review). Or state policies and insurance plan policies making it nearly impossible to prescribe moderate to high doses, even in circumstances where a patient has demonstrated long-term safety and stability, etc.

But…

While I think forced tapering of stable/thriving patients “because CDC” is wrong and harmful, I’ve found myself in the past 5 – 10 years accepting that many patients on chronic opioid therapy for ‘chronic non-cancer pain’ and even long-term cancer pain, can be tapered and have a better quality of life off opioids, or on lower doses. Some won’t and we can’t tell in advance all the time who will benefit from opioid tapering or not, and it’s really important that those patients whose lives worsen with opioid tapering are cared for by knowledgeable clinicians who can manage their pain including continuing chronic opioid therapy.

All that’s true, but I continue to be impressed with the number of patients who do great with opioid tapering – it’s a lot of effort and, literally, pain on their part, but many feel better afterwards, have a better quality of life, and honestly I would never have believed that 10 years ago and it’s taken me seeing it over and over again to believe it. It’s really changed my views on opioids, and I continue to believe we really don’t know a lot about what opioids do, how they work, how they affect our patients’ perceptions and emotions.

It’s important to be really clear why I think many of these patients should be helped through a tapering process: it’s not because most of them have substance use disorders, it’s not because they are using opioids dangerously or contributing to the larger opioid crisis (these patients are some of the most highly scrutinized patients in all of medicine), it’s not because their risk of overdose is large (there is a risk, but it’s small), but it’s because opioids are not improving their quality of life, and are often worsening it, and they will feel better and be happier off of them. It’s been so eye opening watching many of my patients go through this – talking about how they can feel their emotions again (and all the messiness of that, but they are grateful they have their emotions back), about how reducing opioid doses was painful but after several months they find themselves being more active, they still have pain but it’s manageable, etc. It took me a while to come around to this, but I’ve now seen so many patients whose lives have been markedly improved coming off opioids, that I routinely work with my patients with longer prognoses to reduce their opioid doses, and it goes pretty well most of the time, and like most hard lessons in medicine, I learned it from my patients.

Read the rest of this series:

Part 1 – Introduction, General Disclaimers, Hand-Wringing, and a Hand-Crafted Graph.
Part 2 – We Were Wrong 20 years Ago, Our Current Response to the Opioid Crisis is Wrong, But We Should Still Be Helping Most of our Long-Term Patients Reduce Their Opioid Doses
Part 3 – Opioids Have Ceiling Effects, High-Doses are Rarely Therapeutic, and Another Hand-Crafted Graph

For more Pallimed posts about opioids.
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.

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by Drew Rosielle (@drosielle)

Part 1 – Introduction, General Disclaimers, Hand-Wringing, and a Hand-Crafted Graph.

This is the first in a series of several posts about many aspects of my current thinking about opioids, with a focus on how my thinking about opioids has changed over the years.

Opioids, opioids, opioids. The working title of these series of posts was in fact “Goddamned Opioids and the Goddamned Opioid Crisis’ because it’s a confusing time out there. A lot of us in palliative care have watched the unfolding, devastating, opioid overdose crisis in the US with dread and horror, as well as the multitude of responses to it, some of which have been harmful to patients.

But, on the other hand, the reality is my thinking about opioids now, in 2019, is markedly different than it was in 2009. A lot has changed, I’ve changed, and honestly I’m a lot less enthusiastic about opioids’ therapeutic potential for treating pain than I was 10 years ago. I hope to describe those changes and the evolution in my thinking about opioids over the last decade here, and to look at some of the very basic assumptions we make about opioids.

This series of posts is not going to be solely about the overdose crisis and opioid policy. I plan on talking about some of the things I believed early in my career, which I no longer believe to be true – like the preferability of long-acting opioids, opioid equianalgesic tables, opioid ceiling effects, and my thoughts about the current fashion of ‘exempting’ cancer pain and ‘patients receiving palliative care’ from some of the newer guidelines and policies. Hint: I don’t think it’s an unequivocally good thing those groups are carved out.

It should be noted that I know I’m discussing a convoluted and emotional topic, but in order to talk about it one must talk in generalities, so I will talk in generalities. And I just want to say that I will make liberal use of qualifiers like ‘mostly’ or ‘rarely’ and that when I use such qualifiers I am doing it deliberately. Mostly means mostly, not always; rarely means rarely, not never. E.g., if I were to say something like “high dose opioid therapy outside of end-of-life care is rarely helpful,” I in fact mean rarely, and I do not in fact mean never, because I know there are important exceptions, even if I don’t take the time to elaborate all the examples that don’t fit into the generalized statement.

As I’m writing that disclaimer, it strikes me that in fact a lot of what’s wrong with the current policy discussions about opioids is that the at-times-very-well-intentioned policies to restrict access to opioids fundamentally take the tactic of eliminating our ability as clinicians to care for those exceptions (those exceptions being our patients, who are in pain). I.e., a policy takes the fact that post-op opioids are overprescribed (which they absolutely, 100%, are), and the fact that for many surgeries many patients do just fine with, say, 3 days of low dose opioid therapy (also absolutely true), but then policy is created which effectively makes it very difficult for clinicians to adequately treat the minority of patients whose post-op pain course requires higher or longer doses (for example, mandating only 3 days of meds get prescribed post-op, even if they are discharged on a Thursday and if the patient needs more meds on a weekend no one is available who can e-prescribe opioids; or by essentially auditing/scrutinizing/punishing clinicians who prescribe more than than ‘the standard,’ even when it’s completely clinically appropriate and safe, thus discouraging the clinician of appropriately caring for the patient because they are being told from many stakeholders that ‘good care’ is ‘not prescribing a lot of opioids’ instead of the far more nebulous but ‘actual well-being of patients’).

It’s this elimination of our ability to provide individualized care for patients on the rightward end of the long-tail of opioid need that is a major problem so many of us are facing right now.




Read the rest of this series:

Part 1 – Introduction, General Disclaimers, Hand-Wringing, and a Hand-Crafted Graph.
Part 2 – We Were Wrong 20 years Ago, Our Current Response to the Opioid Crisis is Wrong, But We Should Still Be Helping Most of our Long-Term Patients Reduce Their Opioid Doses
Part 3 – Opioids Have Ceiling Effects, High-Doses are Rarely Therapeutic, and Another Hand-Crafted Graph




For more Pallimed posts about opioids.
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.

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by Christian Sinclair (@ctsinclair)

As some of you may already now, we lost a great voice and energy in our field of palliative care and hospice yesterday, August 4th, when Kathy Brandt died at home with her wife,Kimberly Acquaviva and son, Greyson. Kathy was diagnosed with ovarian cancer in January of 2019. Kathy most recently worked on the National Consensus Project Guidelines, 4th edition, as the writer and editor, which was released in 2018. She had over 30 years experience in the aging and end-of-life issues and was helpful to many organizations as the principal and founder of the kb group.

In addition to all that work over the past 30 years, her most lasting impact is likely to be her own narrative, which she shared online with all of us. Through Kathy's social media posts and the insight of Kim and Greyson as they walked her journey with her, we have been able to follow along and see the ups and downs of serious illness and end of life.

I was able to work alongside Kathy in a few instances and she always had the energy, wit and insight to improve the situation and manage the project. I will miss her greatly, and I know a lot of you will too. I hope that we can all find a way to include her in the work we do and remember the contributions she made to promoting excellence in the work that we do.

We can all probably help a little by contributing to their GoFundMe. I'm sure we can get it over $100,000. It is at $81,842 right now.

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by Sarah Rossmassler (@srossmassler)and Diane Dietzen (@ddietzen)

As a part of our palliative care team’s educational efforts for the medical residents at Baystate Medical Center, a 712-bed tertiary care academic medical center in Springfield, MA, we prepare and present an academic half-day about twice a year. This year, since our turn came in March, we organized the teaching around a March Madness theme. We had a ton of fun preparing it and felt it was an engaging format for both the palliative care faculty and the residents. In the spirit of Christian Sinclair’s call to use the format in palliative care (as NephMadness has done so beautifully) we wanted to share what we learned and offer our materials and pearls of wisdom to the PalliMed community.

What we did
We began by having palliative care faculty members select two articles from the recent palliative care literature within four topic areas: communication, goals of care, symptom management, and existential distress. For the first round (about 70 minutes), each faculty member had 7-10 minutes to present their two chosen articles to the residents. Faculty volunteers were responsible for researching and identifying their own papers; we asked each faculty member to choose one review article and one recently published paper that would educate residents in palliative care competencies. We assigned two faculty to each topic area in order to provide a well-rounded and representative selection of papers.

After each of the first presentations, the residents voted for one article they found most relevant to their practice. Then we broke into groups of 4-6 residents with roaming faculty preceptors; the small groups allowed residents to delve deeper into the papers and to discuss which paper they felt was most influential and valuable to integrating palliative care into their practices. Faculty had prepared one-page summaries with insights about why they thought the paper was important. We tried to tailor the summaries to the resident perspective, as most are focused on primary palliative care. Next, we came together as a group to continue voting. After residents voted for each of the next pairings of papers we ended up with a final winner.



What worked well
The competitive nature of the format made it fun for both faculty and residents. The faculty member whose paper was voted the winner was promised a prize by our medical director: a jug of local maple syrup… highly coveted! This added to the excitement on the faculty side, and the residents quickly realized that faculty were competing for their selected papers to win. This prompted some good-natured “trash talking” and faculty efforts at persuading the residents to vote for their papers. We believe that the clear bracket framework allowed the residents to quickly review and engage with a broad selection from the palliative care literature.

What could have been better
We used lots of different technologies, and we should have had a test run prior to showtime in the actual room where we had the event. For instance, the YouTube link was expired; which meant our introductory video had to move later in the session, which might have led to confusion about what the theme of the event was. Also, because there were so many transitions (eight different presenters, fifteen voting opportunities) we struggled to hold resident attention and keep faculty on track. We received constructive feedback that some residents felt the organization could have been tighter and that an introduction to the theme would have been helpful for context (some were not familiar with basketball or March Madness). Some residents wished for more clear take-away points. The pace was fast; to those who were not paying close attention, it might have felt frenetic.

Final Thoughts
The March Madness themed academic half-day was a huge success. Since the work was distributed preparation was manageable for our eight interdisciplinary faculty . The advantages of the format are that it includes nerdy paper reviews, showcases the interdisciplinary nature of the palliative care team, and being interactive, it kept the attention of our resident physicians. We loved that the residents selected our Chaplain’s paper on Addressing a Patient’s Hope for a Miracle as their final winner; it showed us that this is clearly a difficult topic for residents and faculty alike.

The Winning Paper
Shinall, M. C., Stahl, D., & Bibler, T. M. (2018). Addressing a Patient’s Hope for a Miracle. Journal of Pain and Symptom Management, 55(2), 535-539. doi:10.1016/j.jpainsymman.2017.10.002

If you want to try our format…
We’d be happy to share what we did. We made:

• A two-minute video to showcase the theme (with AC/DC Thunderstruck as the score)
• An interactive excel spreadsheet with the brackets
• We used Turning Point for the voting. Consider having a tech person on site to manage the interactive technology (we had our tech-savvy librarian there).
• If you would like our materials (youtube video, excel brackets) e-mail sarah.rossmassler - at - baystatehealth.org.

Sarah Rossmassler works on the palliative care consult team at Baystate Medical Center in Springfield, MA. She recently completed her DNP at the MGH Institute of Health Professions during which she developed and implemented a QI project with Trauma Surgeons, teaching them the Best Case/Worst Case Communication framework. This work has spurred further interest in other types of graphic aids as communication tools for patients, families, and interdisciplinary teams. In her free time Sarah is caretaker of two mini donkeys (Luna and Mabel) who teach her daily about the importance of staying grounded.

Diane Dietzen is the Medical Director of the Palliative Care Program at Baystate Medical Center and is board certified in Internal Medicine and Hospice and Palliative Medicine. Prior to joining Baystate in 2011, Dr. Dietzen planned and developed a Palliative Care Program at the Abington Memorial Hospital in suburban Philadelphia. Dr. Dietzen served as an Associate Director of the Residency Program educating Internal Medicine Residents. Dr. Diane Dietzen earned her Medical Degree and completed her Internship and Residency at the Temple University School of Medicine.

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by Bob Arnold (@rabob)

I am not sure what led me to go from thinking about data and evidence in the literature to waxing philosophical recently. It may be that I saw Rufus Wainwright in concert and heard him sing “Hallelujah” with his sister, Lucy Roache Wainwright (Google it). It may be that one of our cardiology fellows died suddenly of unknown reasons and everyone at my hospital is a little fragile. Or that I was just on service and trying to balance the existential realities of sadness and dying with teaching learners and dealing with institutional budget cuts. But when I sat down today and tried to think of what article to review what popped into my mind was David Foster’s Wallace’s 2005 Kenyan commencement address.

This is where I go to whenever I am feeling philosophic. I go to it because it, more than anything else I’ve ever read, summarizes the human experience, what is real about it, and what is hard about it. And so, it reminds me of how hard it is to stay present, be curious, and think about is “just in my head”. It is too long for a blog post (and I hope you’ll go here to read or watch it). So what I am going to do is give you some illustrative quotes and then a couple of comments.



There are these two young fish swimming along and they happen to meet an older fish swimming the other way, who nods at them and says "Morning, boys. How's the water?" And the two young fish swim on for a bit, and then eventually one of them looks over at the other and goes "What the hell is water?"

The point of the fish story is merely that the most obvious, important realities are often the ones that are hardest to see and talk about. Stated as an English sentence, of course, this is just a banal platitude, but the fact is that in the day-to-day trenches of adult existence, banal platitudes can have a life or death importance.

Think about it: there is no experience you have had that you are not absolute center of. The world as you experience it is there in front of YOU or behind YOU, to the left or right of YOU, on YOUR TV or YOUR monitor. And so on. Other people's thoughts and feelings have to be communicated to you somehow, but your own are so immediate, urgent and real.

As I'm sure you guys know by now, it is extremely difficult to stay alert and attentive, instead of getting hypnotized by the constant monologue inside your own head (may be happening right now)….It means being conscious and aware enough to choose what you pay attention to and to choose how you construct meaning from experience. Because if you cannot exercise this kind of choice in adult life, you will be totally hosed. Think of the old cliché about quote the mind being an excellent servant but a terrible master.

If you're automatically sure that you know what reality is, and you are operating on your default setting, then you, like me, probably won't consider possibilities that aren't annoying and miserable. But if you really learn how to pay attention, then you will know there are other options. It will actually be within your power to experience a crowded, hot, slow, consumer-hell type situation as not only meaningful, but sacred, on fire with the same force that made the stars: love, fellowship, the mystical oneness of all things deep down.

Because here's something else that's weird but true: in the day-to-day trenches of adult life, there is actually no such thing as atheism. There is no such thing as not worshipping. Everybody worships. The only choice we get is what to worship.

It is about the real value of a real education, which has almost nothing to do with knowledge, and everything to do with simple awareness; awareness of what is so real and essential, so hidden in plain sight all around us, all the time, that we have to keep reminding ourselves over and over:

"This is water."

"This is water."

It is unimaginably hard to do this, to stay conscious and alive in the adult world day in and day out.

So, what does all this mean for us as palliative care clinicians (or humans)? First, I think it reminds us how easy it is to see our daily lives as normal. I love rounding with first-year medical students who are just amazed that clinicians walk in on people and have conversations with half naked people, sometimes while getting on or off the toilet. That we have difficult conversations in rooms where there is a patient next door (and the cleaning person, dietician and four other people coming in and out). It is so easy to become numb to the hospital experience that you do not realize how completely bizarre it is and how off-putting and alien the experience of health care is.

Second, the stories that I tell in my head about patients, families or other clinicians are just that - stories that I tell in my head. I need to lose my certainty about the story and gather information about the other stories in the world. I need to continually ask myself whether my reactions are because of what is going on in the world, or what is going on in my head.

Finally, I need to cut myself a break. It is really hard given that the only experiences I have are my experiences, to get caught up in that experience. So much of what was resiliency activities (like meditation) are about helping me maintain my awareness and give me choices over what I see and what I do. My days are hard and the budget cuts suck. When I get knocked off balance, realizing that this is the human condition, helps gets me up the next morning, appreciate what I have and move forward.

Next week, I go back to reviewing articles.

Robert Arnold MD is a palliative care doctor at the University of Pittsburgh and a co-founder of 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!)

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by Christian Sinclair (@ctsinclair)

Another year has passed and we are celebrating the 14th Anniversary of Pallimed. Digitally speaking, 2005 is a pretty long time ago, before Twitter started and when YouTube was only 4 months old. I want to emphasize that what Drew Rosielle started with a single blog post as a 3rd year resident is something all of us are capable of doing. You have knowledge to share with a wider audience. At the time Drew was not an expert in hospice and palliative medicine, but he had passion, and he put his work where people could find it. The goal was not to build a brand or build followers, but to share information he thought would be relevant to his work in palliative care. Knowing these roots, I am on the look-out for clinicians in our field who are publishing independently. We go through dry patches but recently, more palliative clinicians are creating innovative and quality online content and I love it. Here are just a few examples:

Example 1 - Dr. Jared Rubenstein and his Palliative Care Public Service Announcements









Example 2 - The Palliators Podcast - Started by three hospice and palliative medicine fellows Dr. Tara Kattine, Dr. Nancy Hart Wicker, and Dr. Katie Mollow. 4 episodes are in the can and on Apple and Spotify. I hope they keep it going!

Example 3 - Kayla Sheehan and sharing her experience as a medical student with a career goal of hospice and palliative medicine. Follow her journey on Twitter @kksheehan.

Attending: "What specialty are you thinking of?"
Me: "#Palliative"
Attending: "No one has ever said that answer before."

Give me a couple years. I'm rounding up some troops! #hpm

— Kayla Sheehan (@kksheehan) July 23, 2018

Example 4 - Dr. Alex Sable-Smith and his educational YouTube videos focused on Primary Palliative Care. Only three so far but I am hoping for some more.



So maybe you have an idea for a blog, video series, Twitter account, Instagram account or podcast. What is stopping you? Impostor syndrome? Find a mentor to give guidance and encouragement. Not enough time? Build a team and go further together. Technophobia? Google it! There are plenty of free/inexpensive tools and YouTube how-to videos to get it done. I really have learned a lot from Austin Kleon's book "Show Your Work" Here are the key points boiled down.



If I missed some new creative content in our field, please Tweet at me or share in the comments below. When we are celebrating our 28th anniversary I would love to point to examples of other people at their 14th anniversary! Christian Sinclair, MD, FAAHPM is on-call this weekend and still managed to pound out a quick anniversary blog post. He is a palliative care physician at the University of Kansas Health System.

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by Lizzy Miles (@LizzyMiles_MSW)

Lately I’ve been thinking a lot about the perception of time and how it affects our patients. Because their time is limited, their perception of time and its value can often be magnified. This is our job, but this is the patient’s LIFE. We have to remember that for our patients, they may be hyper-focused on time. How do we help them feel good about timing and the time we spend with them? We can do this by being mindful of how we use our time with them and also how we show respect for their time.

Set expectations
There is research in the ambulatory care arena that says that patient satisfaction is increased if a patient knows how long they are going to have to wait to see the practitioner. It would be reasonable to conclude that this would apply to hospice visits as well.

Intervention: Always give a time range for when you’re going to visit so you bake time in for traffic, other longer visits, etc.

So much caregiver distress could be alleviated if we just set expectations appropriately.

Interventions:
• On admission, make sure you tell patients and families the visit frequency for each discipline.

• Inform family members how your organization’s paging system works. Encourage them to let us know when they call how important their call is. Encourage them to call back if they haven’t heard back from the staff member and they feel it’s urgent.

• If you’re taking a message for another staff member, don’t make promises for others. If you know there is a potential for delay in the other staff member calling them, let the patient know.

Coordinate with all team members to address patient/caregiver crises in a timely manner
Our perception of a reasonable response time for telephone calls or visit likely differs significantly from what a patient or caregiver feels they need. We may think two or three hours is a reasonable response time to visit when a caregiver calls about a new symptom that is causing panic. The caregiver may want us there ASAP. When we can’t get there quick enough, what happens? They call the squad. Emergency room visits for normal hospice symptoms are excessive, unnecessary and can be avoided with coordination.

Sometimes, the staff member who is initially requested may be caught up with something else, and another team member may have to temporarily assist.

Here are some options to consider as well:

Intervention: Can another staff member return the call to find out what is going on?

A social worker may be able to talk to the family member and learn that the caregiver simply wants to order equipment or supplies. Even if the need is for nursing, a call from a social worker to find out what’s going on can be helpful. The need may be for a question to be answered that social work can coordinate with the primary nurse or triage. If a nursing visit is needed, the social worker can inform the family the estimated time that the nurse will be coming out. Sometimes an estimate in itself all the reassurance the family needs.

Is it a matter of the caregiver just not knowing what medicine to administer and education can be provided on the phone by a triage nurse if primary nurse is unavailable?

There is nothing worse for families to not receive a call back when their question was a simple one that could be answered with instructions and education.

Is the social worker or chaplain available for a visit? Sometimes the family wants a ‘body’ from hospice and are comforted by the present of a social worker or chaplain.

Even with patients who are actively dying, I’ve found that as a social worker there is a lot we can do at the bedside to help the family. I’ve gone out to homes in advance of the nurse only to find that family just needed to know that the symptoms are normal and reassurances that they are doing everything right. There have been times where the family has said after my social work visit that they don’t need a nurse visit anymore. To be clear, I’m not in any way doing nursing work when I’m there. What I can do is assess if patient looks comfortable and there are no signs of distress or discomfort. Sometimes just hearing an outside person’s reassurances is all a caregiver needs in that moment.

Is there another nurse on the team who has a lighter load who can visit?

A good hospice organization will have a culture where staff members help each other out.

Intervention: Lead by example with your team members and provide support if another team member is “in the weeds.”

When what you give is never enough

I have to acknowledge there are patients and caregivers who do seem “needy” with time and sometimes their needs are beyond the scope of the work that we do. Patients with COPD in particular can be highly anxious and can have emotional needs. For these patients, we do need to also set time boundaries.

Intervention: Set expectations by telling a patient at the beginning of the visit how much time you have.

There are visits where you do have a limited amount of time due to another scheduled appointment. It’s best to acknowledge this for the patient or caregiver up front so that they don’t perceive that you are bored or impatient with the visit if you frequently look at your watch or the clock.

It may be helpful to know that there is patient satisfaction research that indicates that patients perceive that a provider spent more time with them if they sat down. Do you use a chair or stool in your visits?

If needs are emotional, be sure to be engaging the entire team in coordinating visits so they are spread out across the days. Utilize your volunteers to provide extra support to emotional patients and remember that telephone calls can be an intervention as well.

Show that we value the patient’s limited time

“If I’m here and you’re here, doesn’t that make it our time?” – Jeff Spicoli

Patients who are on hospice have limited energy. Caregivers can be overwhelmed and exhausted. If they’re not up for a visit, we shouldn’t force it because we need to check a box that we did our visit. There are nuances between someone declining a visit because they don’t want to bother you and declining a visit because they don’t need or want it.

Interventions:

• Psychosocial support staff should always ask for permission to visit with patient, whether they are in a facility or in a home.

• Always ask for permission to visit with caregiver. If a caregiver says it’s not a good time because they have a hair appointment, celebrate that they are doing self-care.
Also, patients or caregivers may want a visit to end before they tell you. Always assess nonverbal behavior to see if they’re talking because they want to or if they are just being polite.

Sometimes patients or caregivers say no to a visit because we are vague with the request. They may be more open to us visiting if we clarify how much time we plan to spend and the purpose for our visit. The more information they have with the inquiry, the more likely they are open to meeting with us.

Here are some of my favorite quotes on time:

Better three hours too soon, than one minute too late.
William Shakespeare

A man who dares to waste one hour of life has not discovered the value of life.
Charles Darwin

All that really belongs to us is time; even he who has nothing else has that.
Baltasar Gracian

The bad news is time flies. The good news is you’re the pilot.
Michael Altshuler

If not now, when?

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and regular contributor to Pallimed.org. Lizzy authored 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. You can find her on Twitter @LizzyMiles_MSW.

Photo credits: 
Cover image uses photo from Jon Tyson via Unsplash
watch via Wil Stewart on Unsplash

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by Michael Pottash (@mpottash)

Comfort Care, whatever does that mean? This is the important question asked by my colleagues Anne Kelemen and Hunter Groninger in the September 2018 issue of JAMA Internal Medicine. The term is ubiquitous and its interpretation influences how patients with end stage illness are cared for at the end of their lives. In their article they argue that the language of Comfort Care is confusing and easily misunderstood. They suggest improving the understanding around end of life care and moving to a less ambiguous term for care of the dying. I worry that any term to describe dying care will always be problematic.

So what is Comfort Care? One common definition comes from Blinderman and Billings, writing in the New England Journal of Medicine, defining it as “the most basic palliative care interventions that provide immediate relief of symptoms in a patient who is very close to death.” Another is from the National Institute on Aging, describing Comfort Care as “care that helps or soothes a person who is dying ... to prevent or relieve suffering as much as possible and to improve quality of life while respecting the dying person’s wishes.” Both definitions are simple enough, and yet lack any specifics or direction for clinicians. This leaves the practice of Comfort Care up for interpretation.

Kelemen points out the pitfalls in operationalizing this vague term. First, it promotes a dangerous misconception that clinical care is binary and that patients must choose between focusing on comfort or not. Second, Kelemen cites a study demonstrating that while the term is ubiquitous, clinicians don’t actually know what it means. This leads to ambiguity around what kinds of medical interventions constitute Comfort Care and to a wide disparity in which medical interventions clinicians apply under the circumstance. Worse, some seem to think that it means methodically titrating up an opioid infusion: “Nearly half [of surveyed physicians] expressed a belief that Comfort Measures Only care is itself an indication for more aggressive opioid administration than for other patients, regardless of clinical condition. This is of concern because it seems to obviate the critical need for nuanced assessment that drives symptom management.” Administration of inappropriately high dose opioids will hasten death; this is at best bad medicine and at worst euthanasia.

Blinderman agrees:

“However, the term is often used in a misleading or imprecise manner — for example, when such care is automatically considered equivalent to a do-not-resuscitate order and, perhaps even without discussion with the patient, is extrapolated to mean the exclusion of a full range of palliative measures appropriate for a dying patient. Rather than simply writing orders for “comfort care” (or “intensive comfort measures,” the term that we prefer), the medical team should review the entire plan of care and enter explicit orders to promote comfort and prevent unnecessary interventions.”

A Pallimed post by Drew Rosielle from 2016 made a similar protest:

“One, it amplifies the already irksome and unnecessary dichotomy we have set up in medicine between 'cure' and 'comfort’... What we are trying to do in palliative care is to reduce the gap between the two, to help our patients feel better as they live longer… Two, it's confusing for patients and should never be said in front of them. I've seen it lead to stupid miscommunication many times. Like someone asking a patient 'Do you want comfort care?' 'Do you want us to focus on keeping you comfortable?' and the patient saying 'Yes of course' not realizing that the clinician was actually saying 'Should we stop efforts to prolong your life and *only* provide ongoing interventions to alleviate symptoms/provide comfort?'”

To summarize: Comfort Care is confusing to patients and families, no one knows how to provide it, and it can be harmful.

Here is the kicker from Kelemen:

“End-of-life care plans must be specific to the patient and family, reflecting their values and goals for that critical event and universal experience. To highlight this, we coach colleagues and families to consider every therapeutic intervention—for example, each medication, laboratory test, imaging study—and evaluate whether that intervention promotes the goal of alleviating symptom burden during the dying process. If it does (eg, oxygen administration in hypoxia), we continue it; if not (eg, the ubiquitous statin therapy), then perhaps it could be discontinued after reassuring communication with patients and families.”

Let’s treat dying patients as we would treat any patients: as thinking clinicians. Continue treatments that meet the goals of the patient and family, and discontinue treatments that do not. If the goals of the patient and family are to prioritize symptom management over life prolongation then ask the question of every test, intervention, or medication: Does this promote quality of life? Some life-prolonging interventions can be continued without impacting quality, if the patient so chooses. This will all depend on the patient’s preferences and the clinical context. That is why it is impossible to create a Comfort Care algorithm, bundle, or pathway - clinical reasoning is still required.

While my colleagues believe that we should use clearer language or work towards a unified understanding of Comfort Care, I would argue that we should get rid of it altogether. Do we need a term for taking care of dying patients in the hospital? If it does not indicate a clinical pathway or answer an urgent clinical question, then what is its benefit? Rather, in my experience, I have only seen it cause confusion, miscommunication, and unethical medical practice. Kelemen has identified a crucial blind spot in our collective medical practice, one that I fear is a symptom of a general misunderstanding and discomfort with how to care for the dying. Let’s teach our trainees to continue reasoning through clinical decisions to the end of a patient’s life, and to provide good medical care even if all that entails is sitting at the bedside to hold their patient’s hand.

Disclosure: Anne Kelemen and Hunter Groninger are dear friends and colleagues.

Michael Pottash MD MPH is a Palliative Medicine Physician at MedStar Washington Hospital Center and Assistant Professor of Medicine at Georgetown University School of Medicine. He is currently very curious to know who will end up sitting on the Iron Throne.

References

1 Kelemen AM, Groninger H. Ambiguity in End-of-Life Care Terminology - What Do We Mean by Comfort Care? JAMA Internal Medicine. 2018

2 Blinderman CD, Billings JA. Comfort Care for Patients Dying in the Hospital. New England Journal of Medicine. 2015.

3 National Institute on Aging. Providing Comfort at the End of Life. Accessed 2018. 4 Zanartu C, Matti-Orozco BM. Comfort Measures Only: Agreeing on a Common Definition Through a Survey. Am J Hospice and Palliative Care. 2013