Mastodon 17_09 ~ Pallimed

Wednesday, September 27, 2017

Palliative Care in the Time of Hurricane Harvey

by Ishwaria Subbiah (@IshwariaMD)

Trouble Brewing
Between the network news and many institutional emails on hurricane preparations, we at MD Anderson knew were in for something ‘big.’ Harvey made landfall on August 25th as a Category 4 hurricane about 190 miles southwest of Houston. The outer bands brought rain without any major disruptions to our practice. As expected, upon landfall, Harvey rapidly weakened but stalled over Texas. The subsequent two days brought a level of rainfall best described as apocalyptic. The institution’s leaders activated the ‘ride-out’ team where the core essential physicians and staff remained in-house for the duration of the disaster.

Bare Bones Palliative Care? Interdisciplinary Team of One
‘Skeleton’ staffing seemed inherently counterintuitive to the model of Palliative Care through the interdisciplinary team (IDT) of physicians, Integrative Medicine team, psychologist/counselors, social workers, case managers, and chaplains. Of course, all the bayous and retention ponds were no match for 50 inches of rain that fell in a matter of a few days. So the roles of the IDT were condensed to the Palliative Care staff who were riding out in the hospital. Our in-house Palliative Care ride-out physician, Dr. Marvin Delgado, embraced his several roles and adds how he was open with his time, and ensured that he and the patient had “the opportunity to cover aspects of symptom management, the physical, emotional, and spiritual, as well as time to discuss and counsel about what’s been happening.” Dr. Delgado adds, “As I realize that I cannot do much about what’s happening outside, but the simple fact of sitting down and listening to [the patient] helped them a lot.” Dr. Delgado goes on to reflect how striking it was that despite their own struggles and suffering, the patients were still worried about others around them; they were very open to sharing their thoughts and sentiments about the situation with him.

Multimodal Care!
Harvey became a test of a multimodal care model during any disaster (natural or otherwise). Overall the Palliative Care team cares for about 155 people (and their families) on a daily basis between the Supportive Care clinics, inpatient consult team, and inpatient Acute Palliative Care Unit (APCU). It was amply clear that access to the Texas Medical Center was neither safe nor feasible. Within our faculty and staff, several were experiencing active water damage to their homes, and many more were under mandatory evacuation orders. The remainder of us were ‘hunkering’ down at home. So how do you provide care when your traditions of practice (i.e. face-to-face encounter, etc) are simply not possible?
Soon, emails started floating around to our department mailing list – ‘my streets are flooded but I have power and internet access and can help from home.’ Faculty, fellows, nurse practitioners, and physician assistants announced their availability to help via phone. As a priority, the in-house physician for our service first rounded on the APCU patients, for whom we were the primary inpatient physicians. From their home, our medical assistant and Palliative Care fellows took charge of the department pager. They answered the calls from two sources – the inpatient consulting teams and our outpatients.

Telephone Care
As is standard practice, when the inpatient primary teams paged to report sub-optimally controlled symptoms, our responding Palliative fellows (with the assistance of faculty available via telephone) provided recommendations and, for those consult patients with the highest level of distress or a suspected toxicity, the in-house PC physicians evaluated them in person. The underlying sentiment among all in-house at MD Anderson during the ride-out was clear – this is an exceptional time and we will all deliver as effective a care as possible under the circumstances.

For Palliative Care, this translated to a level of understanding from the primary consulting teams that whereas at any other time, we as PC team would be there to evaluate most patients in person, during these times, we will get as much relevant info over the phone prior to giving recommendations to them to order and execute if they feel it is appropriate.

Outpatient Calls – more than pain!
Our Outpatients paged us, mostly concerned about the institution’s closure and their cancelled Oncology and Supportive Care clinic appointments particularly because they were due for a refill of their opioids for cancer pain. With a telephone assessment for opioid-associated toxicities and efficacy and based on their electronic medical history (in particular any prior concerns for aberrant opioid use), as a departmental decision, we transmitted an e-script for a 2-4-week supply of their controlled substances until their next visit. By the 3rd day, a Palliative Care clinic crew of 4 physicians and 2 nurses assembled in the clinic to individually call each patient who had contacted us as well as those with missed appointments. Patients shared the overwhelmingly positive, qualitative response to have a clinician directly speak to them during this time of distress.

Uncertainty ruled in every aspect of life
Beyond pain or whichever symptom prompted the patient to call us, the universal sentiment we observed was distress of varying degrees as a direct consequence of uncertainty – an uncertainty extending through nearly every aspect of their life from disease management to their own homes/lives to the state of their medical care providers’ facilities. Regarding their cancer treatment, questions ranged from the cancellation of a scheduled infusion, the consequences this delay and interruption to this treatment and disease outcome, and the limited communication (since the clinics were closed) during the early period of the worst rains when it was not clear when the clinics and infusion centers will be back up and running. Patients were also concerned about their home (flooding, electricity, flooded cars, access to food and water) as well as access to care (flooded roads at home or near the hospital, most pharmacies being closed, major hospitals being inaccessible even through 911). Ultimately, the amalgam of all these elements of distress presented with a greater need for Supportive Care.

“An Army of People”
On Monday August 28 and Tues August 29, when the medical center was inaccessible, we had an in-house ride out team led by Dr. Marvin Delgado and our Chair Dr. Eduardo Bruera as well as 6 faculty, 4 NPs/PAs, and 4 fellows (many of whom had sustained damage to their own home) provided telephone care for all new inpatient consults, our current inpatients, as well as clinic patients.

The Supportive Care “Army of People” (as our Chief Medical Officer Dr. Karen Lu phrased to NPR) was out in full force in support of our patients, families, and consulting teams during these trying times! By August 30, when the rains slowed, water in the Texas Medical Center receded, and a handful of roads became accessible, the larger IDT recognized the distress that disruption of a person’s scheduled care can cause. The Supportive Care team mobilized 12 Palliative Care physicians along with our department administrator, 2 Integrative Medicine physicians, 2 Rehabilitation physicians, 8 nurse practitioners/physician assistant, 4 Palliative Care fellows, and 2 psychologists/counselors – all of whom came into the hospital during the ride-out phase voluntarily to take care of the comprehensive needs (both physical symptoms including management of pain, nausea, vomiting, shortness of breath and psychosocial symptoms including high level of distress, anxiety, depression) of over 100 inpatients and their families, in addition to calling many more clinic patients with a management plan during the outpatient closures.

“It was a call, a necessity to help!”
Ultimately, we as Palliative Care practitioners observed that the uncertainty and associated distress of a large scale disaster can be mitigated to an appreciable extent by the presence of the medical team and sense of ‘normalcy’ brought on by the care of the palliative care provider, and, knowing that in due time, the logistics of missed appointments, infusions, etc. will be sorted out. (Indeed, in the subsequent two days, the hospital leadership and clinic teams effectively rescheduled a majority of missed visits and infusions including the medical teams opening full clinics on Saturdays and Sundays.)

As the rains began while he was home, Dr. Delgado reflects on the compelling overwhelming sentiment to come to see patients. He notes, “I believe that people with advanced illness are people who are having their own Harvey in their lives and on top of that they are experiencing something else that is happening outside that they cannot really control. It was a call, a necessity to help!”

Ishwaria Subbiah, MD, MS, is a medical oncologist and Palliative Care physician at the University of Texas MD Anderson Cancer Center. When she's not chasing after her 3 young kids, she and her husband can be found at the opera (sans children, of course).

Wednesday, September 27, 2017 by Pallimed Editor ·

Tuesday, September 26, 2017

Lorazepam, Haloperidol, and Delirium

by Drew Rosielle

JAMA Internal Medicine has published a double-blind, randomized, placebo-controlled trial of adding lorazepam to haloperidol in patients with advanced cancer and agitated delirium. (We had a heads up about this trial because it was presented at ASCO earlier this year.) If there ever was a sort of consensus in HPM about how we should be treating delirium, my sense is that it’s been shattered by the recent RCT of low-dose haloperidol vs risperidone for delirium in Australian palliative care unit patients, showing those drugs worsened delirium symptoms. So, it seems like we should all see what we can learn from this newly published investigation.

The authors note that to be best of their knowledge there has never been a RCT involving a benzodiazepine compared with placebo for delirium. The one kind of famous (if you are a delirium geek) trial which looked at benzos, which was the trial I was directed to when I asked why not benzos for delirium when I was training, involving a 3-way comparison of lorazepam, haloperidol, and chlorpromazine for delirium in hospitalized patients with AIDS, and registered 6 (!) patients in the delirium arm (lorazepam patients did worse). It had no placebo arm.

In fact, there is a lack of high quality drug trials in the delirium world which involve genuine placebo arms, ie, an arm in which there was no active pharmacologic treatment. I have wondered if we’ve made a huge mistake by doing trials which assumed haloperidol was the standard of care, without robust data to actually support that, and so have just done comparison trials of haloperidol with other agents, or like this study, a benzo or placebo added to haloperidol, when then underlying question, does haloperidol or other antipsychotics actually help (compared with placebo) remains open. See for instance this recent review for a nice summary of what’s out there (noting that this even predated the damning low-dose haloperidol/risperidone/placebo trial): it’s not convincing, it’s not the sort of thing you’d read and say the book is closed on this question, we can no longer have equipoise about comparing antipsychotics to placebo in delirium trials.

I was going to get to this point later in the blog post, but I realize I’m already there, so I’ll say it now: delirium is an international health crisis, it is real, it can be devastating (lead to permanent cognitive changes), leads to far worse outcomes for our patients (longer hospital stays, not being discharged home), costs billions of dollars, sucks shit for the patients and families going through it, and we don’t have a real inkling about actual, effective drug treatment for it. There are some inklings about chemoprophylaxis, but nothing definitive. Multidimensional prevention programs seem good, I like those, I’m 100% for those, but we need a lot more. If we can do a bloody RCT of simvastatin for chemoprophylaxis of delirium, surely we can do large, multicenter, patient-diverse (dementia, surgical patients, ICU patients, advanced cancer patients, dying patients), high quality, placebo-controlled trials of a variety of drugs, drug-classes – especially testing the ones people are actually using, and dosing strategies to see if there are any effective disease-modifying agents out there!

Which is why I’m just delighted our friends at MD Anderson did this study as it was well-done, although small, and adds to our understanding.

The subjects (N~60) were patients at MD Anderson’s palliative care unit; all had advanced cancer, and all had agitated delirium (RASS score of 2 or more; it looks like they changed the protocol to 1 or more mid-study – there’s a lengthy supplement involving the protocol changes). All had received haloperidol as a primary treatment for delirium – it looks like they used a protocol of 2 mg IV q4h scheduled + 2 mg IV q1h as needed. The patients were followed with q2 hourly RASS assessments and then received 3mg IV lorazepam or placebo if they continued to have an agitated RASS (mean RASS score prior to being the study drug was 1.6). Importantly, the patients also received a 2 mg prn dose of haloperidol as well regardless of which group they were assigned too. Of note, all the patients studied had delirium for at least 2 days prior to enrollment – these were patients with persistent delirium who didn’t get better quickly after routine interventions. After enrollment the median observation time was 6.4 h (after a median of 6.4 h, the patients had an agitation episode leading to being given the study drug). Median haloperidol doses prior to receiving the study drug were 5-7 mg in the prior 24h.

The primary outcome was RASS score 8 h after the single dose of study drug.

The results are fascinating as hell. To begin with, lorazepam looks really, really good when you are looking simply at the primary outcome of reduction in the RASS score. The RASS score went down rapidly as you’d expect – it was markedly lower in the lorazepam group by half an hour – and remained markedly lower than the placebo group at hour 8: -2.5 for lorazepam, -0.5 for the placebo group (all this was very statistically significant by all the usual tests). Of note, -2 on the RASS is light sedation (briefly awakens with eye contact to voice, but less than 10 seconds); -3 is movement or eye opening to voice but no eye contact.

Ie, these patients were pretty sedated, and much more so than the haloperidol/placebo-only patients.

One may also observe that the placebo patients having a RASS of -0.5 at 8 h means the median state of the placebo patients at 8 hours was something between ‘alert & calm’ and ‘mildly drowsy.’

Got that? While the RASS was a lot lower in lorazepam, the placebo patients’ median RASS could be considered, in fact, a really good outcome, and arguably, a better outcome, than the lorazepam group.

Of course, the reality is much more complicated than that (most delirious patients just don’t go back to normal and stay there), but it’s a good reminder that when using something like the RASS as an outcome, lower is not necessarily better: 0 is normal, and for many patients would be the most desirable outcome. (Notably, the authors address all this explicitly in their discussion.)

Figure 2b in the study is probably more helpful in understanding what happened to these patients than the actual primary outcome graph. What you can see is that at 8 h, in the lorazepam group, basically half the patients were deeply sedated (RASS -3 or less), and half were mildly sedated. In the placebo group, about a third were agitated, and the most of the rest in the mildly to moderately sedated range. If you want, you can actually see what happened to individual patients in the supplement online.

In the secondary findings, they note that many more nurses and caregivers in the lorazepam group than the placebo group judged the patient to be comfortable after the study drug was administered (~80 vs ~30%). The lorazepam group also had fewer ongoing doses of rescue medicines also. Median survival for both groups was ~70 h. I.e., you can essentially understand this to be a study of patients with terminal delirium.

What does all this mean?

It means that lorazepam effectively and rapidly sedates people, better than haloperidol, at the doses studied.

We’ve discussed this on the blog a little before, but this study helps us think about delirium and delirium outcomes better - what outcome we are actually aiming for in these patients. As I implied in the opening discussion of this blog post, I myself am at a point at which I do not consider there to be any active, disease-modifying drug treatment for delirium that I can get behind. By disease-modifying I mean drugs which would return patients to a more normal state of consciousness (i.e. push people closer to 0 on the RASS), and/or reduce the duration of delirium, and/or its long-term adverse outcomes. I think there is hope for antipsychotics, especially used in higher doses than the Australian study, but I don’t think there are any available data which convince me these should be a routine part of our care for delirious patients. We need well-powered, meticulously designed, placebo-controlled, and multi-institutional studies of haloperidol/other antipsychotics.

Until then, it’s just hope, and I honestly don’t know what to do.

I want to be clear, though – with the above I am talking about disease-modifying treatments for delirium. We clearly have, however, rapid & effective ways for reducing the distressing behaviors of agitation by sedating patients.

And I think it’s important that we keep in mind there is a difference between these two goals (sedation vs disease-modification). For our patients near the end of life sedation is often appropriate & acceptable. For some of our patients and their families it is in fact desirable - as this study showed, caregivers as a whole really preferred the moderately to deeply sedated state lorazepam gave these agitated, dying patients. It’s what I would want for myself, or my close loved ones, when close to death.

Sedation however is just not a ‘treatment for delirium,’ in the way that I used to hope low-dose haloperidol was.

Lorazepam has had a bad rap for ‘delirium’ historically. All of us have seen patients become agitated after getting it. Undoubtedly it is a common cause of delirium in hospitalized patients. While I don’t have any data to support this claim, I think much of the bad rap comes from patients who were given small doses of lorazepam, anxiolytic doses, leading to confusion and disinhibition. They weren’t given sedating doses of lorazepam, which is not a hard thing to do, and quite predictably sedates most people. To me, what this study does is help clarify that lorazepam very much does have a role in agitated delirium in patients near the end of life, when the immediate therapeutic goal is sedation. When we do it, however, we should do it right, and use the 3 mg dose like they did in this study, after of course clarifying prognosis and treatment goals with appropriate surrogates.

Tuesday, September 26, 2017 by Drew Rosielle MD ·

Monday, September 25, 2017

Moving From Research to Implementation to Research in Palliative Care, Part 1

by Christian Sinclair

In 2003, I began my hospice and palliative medicine (HPM) fellowship in Winston-Salem, NC. I was a solo fellow in a new program, and as luck would have it, I had loads of time to dedicate myself to learning. Since my wife, Kelly, was beginning her pediatric emergency medicine fellowship in Kansas City at the same time, I only had my dog and my fellowship to worry about. I always enjoyed reading articles and imagined how it would apply in my own practice. But when it came down to it, I was never really able to implement much of what I was reading, let alone have the numbers to benchmark against the research.

Fast forward to Spring of 2016. With years of experience across multiple care settings, I finally had an opportunity to implement research tools into everyday clinical practice by using the Edmonton Symptom Assessment Scale (ESAS) in each visit and tracking how patients do over time. I had used the ESAS in a few visits over the years, but could never seem to use it reliably at every visit with every patient.

At KU, we have been using a modified ESAS (with Mild, Moderate Severe) on the inpatient side for a long time, but never the numbers-based ESAS that would be most applicable to research. In practice, my symptom assessments were always driven more by the narrative of the patient, winding indirectly as the patient told their story. I never pressed hard on getting the mild, moderate, severe directly from the patients mouth, but would interpret their story into the scale and document it. Eventually I would get a comprehensive view of symptoms and make a good clinical plan, but I was never going to be able to use that to demonstrate quality nor publish research.

Even admitting this publicly, has taken me some time to do. I figured that everybody was already getting patient-reported outcomes. Frankly, it feels kind of embarrassing to admit. But as I talked to more people, I realized that other HPM clinicians were also not able to apply tools like the ESAS universally. Sure they might get few numbers or severity scores, but to do that at EVERY visit and for EVERY patient, that takes more than just clinician will. It takes a system-based approach to change. And that is not easy.

So in 2016, I talked with the outpatient nurse navigators, Amy and Wendy, and I asked them to help make sure that EVERY patient at EVERY visit was getting an ESAS form and that we were documenting it in the chart. They were both game, which I look back on and count my blessings. In all my previous attempts, when moving from research to implementation that culture change step always worked for a week or two and then regressed to the baseline. Someone gets too busy, or behind and then the standardized thing you are trying to do feels like 'extra work' for no good reason.

To help ensure our success, we made it a focus to talk about the ESAS at the beginning of the clinic day, in between patients and a debrief at the end of clinic. At first, our language was probably inelegant as we introduced the ESAS concept. When people rebelled against 'one more form' or 'hating those damn numbers', we initially backed down, but we persisted and it paid off, because we refined our language and we discovered how to overcome the hesitation of our patients. We helped our patients see the ESAS numbers as a demonstration of their voice and experience. After one interesting conversation with a patient, we began to call these numbers 'our palliative care labs' because 'no blood draw is going to tell me that your nausea was awful last night.'

It took a while but we also recognized that just 'getting the numbers' was not enough. Going back  to get these numbers after the visit was over and the plan was made was showing the patients that the symptoms were not necessarily driving the plan. So we adjusted and worked to make sure the ESAS was one of the first things we discussed with the patient, which in turn became the spine of the visit and therefore drove the plan.

Once we began to get consecutive visits with ESAS scores, we were able to show the patients their numbers over time. The feedback was tremendous in demonstrating that we cared about their symptom experience, and as we have become more facile in applying the ESAS we have noticed the objections fall greatly.

And now we have lots of ESAS numbers over lots of visits, but (and this is a BIG BUT) they were all buried in the narrative/free text part of the chart. So we needed to find a way to get this data exported from the Electronic Health Record. I'll share how we did that in part two tomorrow, because when I tried to figure out how to accomplish that, there was no guidance online I found helpful. My hope is that these stories of my clinical transformation from research wanna-be to providing the founding blocks of research and quality improvement may help someone else see that it is possible.

If you want to join in the conversation, this Wednesday we will be hosting the September #hpm Tweet Chat on the topic of "Moving from Research to Implementation to Research in HPM." #hpm Tweet Chats are held on the last Wednesday of the month at 9p ET/6p PT. Sign up on to be updated of the monthly topic.

Christian Sinclair, MD, FAAHPM is immediate past president of AAHPM, editor-in-chief of Pallimed and a palliative care doctor at the University of Kansas Health System. If he isn't reading about HPM research, you can find him reading board game rules.

Monday, September 25, 2017 by Christian Sinclair ·

Wednesday, September 20, 2017

Preparing to Show Up: Writing Practices that Serve

by Jennifer Wilhoit

Several months ago I wrote a piece for this blog about nature practices we can do in hospice settings, and when preparing for visits with families and people who are dying. I stressed the vital importance of self-care as we serve individuals with such acute and ever-changing needs. I also reminded the reader that we do not engage our hospice work in a vacuum, but as ordinary humans ourselves with the vagaries of everyday life pressing in on us. We show up to our families and friends; we show up to those we are called to serve in hospice contexts. But how well do we remember to show up to ourselves with sustained attention, presence, deep awareness to physical, emotional, mental, and spiritual needs before we burn out? How well do we attend to ourselves on a daily basis so that compassion fatigue does not catch up with us?

I have been a hospice volunteer for nearly twenty years, while also serving the deep needs of people in transition through my private professional practice as a spiritual ecologist/author who guides individuals and groups through healing, nature-based writing support to meet their unique needs. What I’ve learned through my work is that showing up in a deeply present, engaged, dynamic manner is not only essential for those I serve, but also crucial for myself. We need to maintain a daily connection to fluidity in our lives, being nurtured, inspired, and open to insights. One way I have learned to do so for myself and for my clients, is through writing. So this second article I’m offering in this series looks at simple writing practices that serve both ourselves and others.

Essentially, the practices that follow can be:
1.) rejuvenating,
2.) quick and convenient,
3.) private and sacred,
4.) process-based rather than outcome-driven (and sometimes messy).

We can do any of these practices without much preparation in a moment when we feel depleted, enervated, or in need of clarity.

As I wrote in the first article of my series, these practices are not intended as a panacea, but rather as touchstones of writing that sustains us. These practices can also be used, with modification, directly in our daily interactions with those we serve. I recommend opening up a pause in your schedule and routine. I have done many of these within moments of my next client appointment, or around the corner from the next hospice family. I do them in my car, on my lap on a park bench, in the bright early dawn at home, just before tucking myself in bed at night.

All of these small, simple acts can restore us, thus allowing us to really show up to ourselves as well as to those we serve. I offer them in three categories: practices that nurture, practices that inspire, and practices that offer insight. The most important thing to remember is that these are intended to be for you. There is no standard of quality, or prescription for “good writing.” Any writing will do. This is about process.

Writing to Nurture
For you:
  • Journal about something that adds pleasure to your life.
  • Make a list of activities that help you feel a strong sense of well-being. Select one to do this week.
  • Take five minutes at the end of every workday to quickly write about tense situations from that day.
For those you serve:
  • Offer to help a patient write a letter to a loved one.
  • Suggest free-write journaling to patients, friends, or family as a means of self-care.
Writing for Inspiration
For you:
  • Write a poem. Or handwrite an inspiring poem by someone else.
  • Take a beautiful quotation and post it near your work area, carry it in your bag, or place it on your dashboard.
  • Write out some prayers, mantras, or meditative phrases that help center you.
  • Take your pen and paper outside to a comfortable place in nature. See what arrives on your page.
For those you serve:
  • Offer blessing cards to people you frequently encounter at work. These can be as simple to make as writing one affirming word on a small piece of colorful card stock (i.e., “peace,” “comfort,” “blessings,” “warmth” …”).
  • Share a short piece of beautiful writing with a coworker, family, or patient.
Writing for Insight
For you:
  • Free-write for fifteen or twenty minutes about possible solutions to a problem you face. Do not edit your writing. Allow any possibility (even outrageous ones) to show up on the page.
  • List for yourself the most impactful hospice situations you’ve faced in your career.
  • Write down a few ways that you can use writing to be more effective at work.
  • Write down a story about a time you felt especially motivated.
For those you serve:
  • Write down for family members a short task list or patient care suggestions.
  • Offer families a blank journal/notebook in which friends can record visits, share memories, or paste photos.
The work we do on behalf of others—even out of passion and clear calling—does require a lot of us. Please try these easy practices. Their power lies in repetition, hence the word “practice.” Test out one on a daily basis; or try several over the next week. Modify them to suit your work schedule. Most of all, adapt them to best meet your individual, nuanced, fluctuating needs from moment to moment.

So many blessings to you as you journey through your inner/outer landscape in service to the families who so very much need you.

Jennifer J. Wilhoit, PhD is a writer, spiritual ecologist, & longtime hospice volunteer. She founded TEALarbor stories through which she compassionately supports people's deep storying processes. She lives on an island in the Pacific Northwest. You can find her on Twitter at @TEALarbor.

All photographs in this story are copyright @TEALarbor Stories.

Wednesday, September 20, 2017 by Pallimed Editor ·

Monday, September 18, 2017

“Going Palliative” is Not a Thing

by Staci Mandrola

I love the segment on Last Week Tonight with John Oliver called “How is this still a thing?” His snarky Britishness targets everything from the Sports Illustrated Swimsuit issue to ‘Why do we dress up as other races?’ The skits start out funny but leave you questioning and unsettled.

I hope “going palliative” ends before it shows up on “How is this still a thing?” How do I know "going palliative" is a thing? The phrase is popping up in the academic medical center where I practice palliative care. [And many other hospitals too - Ed.] PT/OT has signed off patients who have a palliative consult ordered (not completed). MDs and APRNs call to ask why their patients are still receiving disease-directed treatment when they “went palliative” last week. Nursing staff asks if they need to continue accuchecks because Ms. A is “going palliative.” Social workers ask why Mr. C hasn’t transferred to the hospice inpatient unit because he “went palliative.”


“Going palliative” became a thing because hospice became a bad word. Hospice is a synonym in the hospital for dying that makes patients and healthcare professionals upset. We are Americans and we battle through adversity. We praise John McCain for his fighting spirit that will help him beat his cancer. Then we temper the language of courage because we know that none of us will ultimately win the battle. In our hospital, palliative has become a four-syllable bait-and-switch for hospice. And now they have figured it out. When you’re “going palliative”, people use it as code for hospice.


Hospice care is for patients who request primarily comfort focused care with the desire to remain in a home-like setting and avoid a medicalized death while having expert management of distressing symptoms. They choose to elect their Medicare Hospice Benefit which is predicated on a physician certifying a prognosis of less than six months. They and their loved ones receive equipment, medication, psychosocial/spiritual care, nursing care and 24-hour support that is a phone call away.

Palliative care is for patients with any prognosis. It can be hours, but it is just as likely to be years. It runs right alongside disease-directed care. Our palliative team consulted on a twenty-year-old battling opioid addiction who needed treatment of severe headache, nausea and dizziness after a motorcycle accident. Our team consulted with a ninety-year-old man who wanted full disclosure of the risks, benefits and alternatives to an open aortic valve replacement. He is alive five years later.

Palliative care manages distressing symptoms at any stage of life and illness. Palliative care provides social, emotional and spiritual support to patients dealing with serious illness and their families. Palliative care helps patients determine what gives their lives meaning and how available medical treatments support or prevent them from continuing to make that meaning.

Palliative care is not an "either/or" choice. It is a “both” choice.

And yes, palliative care may still recommend hospice care when it is appropriate based on that patient’s goals and prognosis.

Why not change our name to “quality of life” care or supportive care? Eventually, healthcare professionals would ask why Ms. A needs accuchecks because she is “going quality of life” or “going supportive.”

“Going palliative” is not a thing. Most palliative care teams won’t employ John Oliver’s brand of snarkiness. But if we don’t continue to educate our colleagues, “Going Palliative-How is this still a thing?” is right around the corner.

Please visit for an in-depth look at palliative care, hospice care and the team approach.

Staci Mandrola (@drstacim) is a wife, mother, grandmother and palliative medicine physician who practices in Louisville, KY. Her husband John writes about cardiology and sometimes palliative care issues at Dr John M.

Monday, September 18, 2017 by Pallimed Editor ·

Monday, September 11, 2017

Privilege and Palliative Care

by Denise Hess

An American pastor recently visited Australia and encountered a curious practice. At the start of meetings, any kind of meeting not just religious ones, she found it is common practice to begin with what is called an “acknowledgment of country.” According to

An Acknowledgement of Country is an opportunity for anyone to show respect for Traditional Owners and the continuing connection of Aboriginal and Torres Strait Islander peoples to Country. It can be given by both non-Indigenous people and Aboriginal and Torres Strait Islander people.
And it goes something like this:
“I’d like to begin by acknowledging the Traditional Owners of the land on which we meet today. I would also like to pay my respects to Elders past and present.”
I happened to hear this story from that American pastor the same week of the Charlottesville protests and counter protests, and the same week I watched the HBO adaptation of The Immortal Life of Henrietta Lacks. These events made me think again about the role of race in palliative care.

In over a decade of working in palliative care, I can say with confidence that I have never met an all-out “racist” palliative care physician, nurse, social worker, or chaplain. However, everyone of us has biases, prejudices, preconceived ideas of how people “should” act and what they “ought” to do, and we carry these biases with us wherever we go. Awareness helps, efforts to counter bias help, but we cannot rid ourselves of bias.

For example, I don’t think I am alone in noticing that I have pre-conceived ideas and expectations about how a patient or their loved ones will respond to palliative care interventions based on their cultural and ethnic background. This is bias. We are all infected with it.

Also, many of us have been given an unearned advantage, by accident of birth, called privilege, that
opens doors we didn’t even realize were closed to others. Privilege is as invisible as air unless you don’t have it and want to breathe. For example, whites and people of color are likely to have vastly different experiences of serious illness and palliative care. As has been well documented by bright minds among us1, people of color tend to receive a lesser-quality version of palliative care2 after receiving less preventative care, later diagnosis, and more challenging access to curative care in the first place.3

As a white woman, if I were diagnosed with a serious illness, I would likely receive high quality palliative care, assistance with advance care planning, excellent pain and symptom management, and help to die in the place of my choice. As a person of color, I may not receive any of the above.

The excellent health insurance I have is the result of the job I have, which is the result of the education I have, which is the result of the family I have, which is the result of the access they had to jobs, education, and opportunities, which is the result in large part of where they were born, when they were born, the color of their skin, the color of their eyes, the texture of their hair. Without those things, I could be without quality health insurance, showing up in the emergency room for primary care. Chance of birth is the source of my privilege.

To add to that, we are all part of health care systems that have institutionalized, operationalized, and standardized racism as part and parcel of their business models. Racism is embedded within the very fiber of organizations and shows up as disparities, lack of access, uneven quality, poor care coordination, and lower patient safety outcomes.

So how to respond? White guilt is not the answer. White guilt makes me the subject and people of color the object once again. White guilt only changes optics, not practices, and definitely not institutions or systems. However, using privilege for the benefit of others can help. Using our voices and our influence over organizations on behalf of those who have been shut out or excluded from various tables of influence can effect change. But even better, using our privilege to lift up the voices of people of color is an excellent step in the right direction.

“But,” I hear you say, “I am a busy (fill-in-the-blank-doctor-nurse-social worker-chaplain), I don’t have time to use my voice to change the system. I’m just trying to finish my documentation!” Fair enough. Yet, spending the currency in our bank of privilege on behalf of others does not have to (but absolutely can) include protest marches, trips to Washington DC, or even visits to the C suites. We can spread our wealth of privilege in simple yet powerful acts like our friends’ in Australia “acknowledgment of country.” Here are a few palliative care possibilities:

  1. Include a person of color in a case presentation as a “positive” example, e.g. not “noncompliant,” “resistant to palliative care,” “opposed to advance care planning.”
  2. Increase your cultural curiosity and competence through relationships with those outside your cultural group.
  3. Read Between the World and Me by Ta-Nehisi Coates, The New Jim Crow by Michelle Alexander (as a start) or watch the film 13th, or I Am Not Your Negro and discuss as a team.
  4. Assess your team’s cultural reach. What groups are over/underrepresented in your patient census based on your local demographics?
  5. Inventory your language. Notice where and when you use terms such as “difficult” patient or, “resistant” family, or when you go into a family meeting with the expectation that the family will "want everything done.”
  6. Watch for “acknowledgment of country” moments when meeting with patients and their loved ones. Are there opportunities to name the ways disparities may be impacting a patient’s situation? Was care difficult to access? Was quality of care poor? Talk about it.

These micro-non-aggressions and micro-extensions of our own privilege on behalf of others are not insignificant. We do not need to be the “white saviors.” We do not need to lead the charge to eradicate racism from our institutions. That would be appropriation. We need to be allies, learning from the experiences of persons of color, always stepping aside to make room for the neglected voices that need to be heard and honored.

Denise Hess MDiv, BCC-HPCC, LMFT is a palliative care chaplain and marriage and family therapist who currently serves as the Executive Director of the Supportive Care Coalition. She is currently on a quest to try all the donuts in Portland, Oregon.

1 Johnson KS. Racial and ethnic disparities in palliative care. J of Palliat Med 2013;16(11). Open Access PDF
2 Welch LC, Teno JM, Mor V. End-of-life care in black and white: race matters for medical care of dying patients and their families. J Am Geriatr Soc. 2005 53(7).
3 2016 National Healthcare Quality and Disparities Report. Rockville, MD: Agency for Healthcare Research and Quality; July 2017.

Note: some links to books are Amazon Affiliate links. Any proceeds go back to supporting this site.

Monday, September 11, 2017 by Pallimed Editor ·

Tuesday, September 5, 2017

How HBO's The Leftovers Parallels Our Work in Palliative Care

By Shayna Rich and J. Maggio

The HBO show The Leftovers has a deceptively straightforward science fiction premise: What happens to people left behind after a Rapture-like event? The Rapture is an apocalyptic event prophesied in the New Testament where people chosen by God disappear into Heaven. In the show, roughly two percent of the world’s population--about 140 million people--mysteriously disappear in an instant. Unlike the popular Christian book and film series Left Behind, The Leftovers is agnostic to the cause of the sudden departure. Some characters believe it was the Christian Rapture, but other characters disagree.

The show never offers an explanation. By using the second-person narrative style, the show revels in the ambiguity of the departure. This ambiguity reflects the way the characters process the event itself.  Was it a scientific or a spiritual event? Why did their loved ones leave? Why did the remaining stay? What does it mean? Where did they go? Whereas pulpy fiction would dwell on that last question--where did they go--The Leftovers is brave enough to tackle the bigger issue: What does it mean? The series is about people trying to find meaning in their confusion, grief, and loss. It occasionally leaps into sci-fi tropes, but it never forgets its mission to examine a world filled with seemingly random and meaningless loss. Since the show is rooted in its desire to find meaning in the context of loss, the viewer is forced to grapple with the power of loss.  Given this theme, The Leftovers often struggles with the same question that we do in palliative care-- how do we help people cope with grief?

Every episode of The Leftovers focuses on one character and it shows how that person copes with loss, either past or anticipated, and struggles to find meaning. Characters ask “Why did this happen to me?” And much as it is for a dying patient, the answers vary. One character, the long-suffering Reverend Matt Jameson, compares himself to Job, a Biblical character who is continuously tested in his belief in God with numerous trials. Matt and other characters insist that God must have purpose in their suffering. Some lose faith or blame themselves. Some even join a cult. But all prefer the certainty of an explanation over the abyss of the unknown. For example, Matt Jameson talks to a man claiming--with some credibility--to be God. Matt wants answers! Yet he struggles to find meaning, even in his conversation with “God.” Likewise, in our work as palliative clinicians, we see the search for meaning every day. Patients seeking a reason for why they were diagnosed with a serious or terminal illness may struggle with their spirituality and their belief in God. Patients often blame themselves if they cannot find a definitive cause of their illness. They may ask us if this happened because of their diet, their smoking habits, or their genes. Patients want a reason, a story to determine a meaning for their suffering.  Regardless of the story, any reason is always more satisfying than not knowing why you or a loved one is dying.

Like the narratives patients often impose upon their illness, The Leftovers is about the stories people tell to make sense of loss. For most people, it is unsatisfying to view the world as a set of unconnected, random events, and evidence shows that people process the world with narrative. The show focuses on how people choose which story to tell, how they treat others’ stories, and our willingness to impose a story on our lives even if it conflicts with logic, experience, or life events. Nora, a character whose husband and two children all disappeared, struggles with the feeling that she does not want to invent a story for what happened unless it is scientifically accurate. The finale of The Leftovers ends with Nora stating “I knew that if I told you what happened that you would never believe me,” followed by another character responding “I believe you.” Her willingness to accept that others can believe her story without proof, represents her growth over the course of the show. Similarly, in palliative care, much of what we do is provide a sounding board for stories. We listen to patients and family members tell stories of how they were told about their diagnosis, what treatment has been like, and what they have been going through in hospitalization. We encourage our patients and families to do life review and make meaning from their lives by telling stories. And much of the support we provide takes the form of listening and believing their stories. The Leftovers emphasizes the value of that support, especially when the truth is unclear or ambiguous.

Cultural critics examining The Leftovers grapple with this ambiguity of truth in their reviews. The show also gives critics permission to explore their own experiences of loss.  Even normally stoic critics like Alan Sepinwall open up about their personal lives and how the show shaped their personal grief. Critic Matt Zoller Seitz’s review of a season 2 episode discussed how The Leftovers connected to his feelings of loss as a widower. Seitz's article even inspired the show’s co-creator Damon Lindelof to write a subsequent episode dealing with grief, loss, and belief in God.  Most beautifully, critic Mo Ryan's article "'The Leftovers,’ Life, Death, Einstein and Time Travel" connects The Leftovers with her complex feelings toward her dying parents, especially her mother’s death from Huntington’s Disease. It has been shared through social media, causing many tears.

The Leftovers not only echoes the concerns of our patients and their caregivers, it also actively helps viewers process their own losses. It is a profound discussion of loss and pure grief. As with much of our work in palliative care, though, it is leavened with humor. The Leftovers is the type of show where Matt Jameson, dying of cancer, argues about suffering with a character calling himself “God,” but it is also a show where he watches "God" be eaten by a lion. Like most art works asking "big" questions, The Leftovers revels in both the wonders and terrors of the mysteries of life.

Shayna Rich, MD, PhD is a doctor who just completed her palliative medicine fellowship and is starting work at Haven Hospice in Lake City, FL. J. Maggio, JD, PhD is her husband, political science professor, and a passionate aficionado of the philosophy of pop culture.

Tuesday, September 5, 2017 by Pallimed Editor ·

Pallimed | Blogger Template adapted from Mash2 by Bloggermint