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Tuesday, September 24, 2013

No More Excuses: Having tough talks in pediatrics

“What words can be uttered? Your turn just slightly and there it is: the death of your child. It is part symbol, part devil, and in your blind spot all along, until, if you are unlucky, it is completely upon you. Then it is a fierce little country abducting you; it holds you squarely inside itself like a cellar room – the best boundaries of you are the boundaries of it.” – Shirley Jackson, from “People Like That Are the Only People Here,” in Birds of America*
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“Doctor, you might have children just like anybody else. Would you want somebody to give you false hope or tell you, ‘OK, your child is gonna be fine,’ and you know she’s not?”  - Parent feedback (Meert et al)

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“Barriers to resuscitation status discussions were ranked according to the percentage of physicians and nurses who identified the issues as often or always a barrier. The top 3 barriers were unrealistic parent expectations (39.1%), lack of parent readiness to have the discussions (38.8%), and differences between clinician and patient/parent understanding of the prognosis (30.4%).”  - Sanderson et al. 
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I first read Shirley Jackson’s short story “People Like ThatAre the Only People Here: Canonical Babbling in Peed Onk” from her collection of short stories Birds of America* as a college freshman. At that time, nary had a thought entered my mind about a career in medicine, and I read the book during my coursework to obtain that ever so useful creative writing degree. The story was used again in a course I took later in college, and, again after I changed paths and went into medical school. It just kept showing up, and I kept reading it. The strange thing was, though, that I would forget I had read it until a few sentences in, when I would start to think, “Huh, this sounds very familiar…”

I’m sure that the 18 year old version of me who read the story took something from it far different that any of the other versions of me who have read it. As it is now, being a mom as well as a physician, I find it almost impossible to get through because it is too real and too scary. Although “fiction,” it is a scene that happens every day, in which moms like me, with kids like mine, and doctors like me, with patients like mine, find themselves abducted by that “little country.”
So when I sat down to write about Amy Sanderson and colleagues’ report on their findings of “Clinician perspectives regarding theDo-Not-Resuscitate order,” I knew I had read something before that would tie in with this study. It was another case of “Huh, this sounds familiar…” I knew there was another angle to this, so I dug through my file folders until I can to the one that said “Parental Perspectives” and another one labeled “Provider Perspectives.”

Both are very full of articles with frayed edges; and in these folders, a dichotomy.
In one folder, articles filled with attempts at identifying the needs of parents by culling through their experiences.  Common themes present themselves: losing a child is incredibly difficult – whether that child was a 17 week fetus or a 17 year old football star; there are no ways to be prepared for the loss of a child; honest and straightforward information and compassionate communication from doctors and nurses is helpful and necessary. In short, parents what to know what is going on, and they want to be able to have the information, even when there is prognostic uncertainty, so that they can be active participants in the care of and decision making for their children.

In the other folder, articles filled with identifying how pediatric care providers handle communication during times of critical and/or terminal illness. These pieces consistently find similar issues with communication between provider and parent/decision-maker. In this particularly lovely Pallimed piece from not so long ago, the author (okay it was me), discusses some of the barriers that seem to keep pediatricians from having the tough conversations. That post particularly pointed out studies citing lack of confidence in these communication skills, a lack of training in these skills, and a concern about prognostic uncertainty in pediatric patients’ disease processes as key barriers.
There is another common barrier theme that arises from the studies of the providers, though. It is one that, in light of what we see from parent surveys and studies in which parents are almost begging for more information, may surprise you.

Pediatricians give, as one of the most common reasons for NOT engaging in goals of care, end of life, or code status conversations a “lack of parental readiness” or “lack of parental acceptance.” There are worries about “unrealistic parent expectations,” as well as “clinician concern about taking away hope.” When I read these reasons, and also think about the combined lack of education and training, as well as lack of confidence, it makes sense how these crucial conversations become avoided. If you don’t feel like you know what you are doing, you are afraid of messing it up, and also afraid of upsetting or having conflict with parents, then pausing to ask “what are we doing and why? And is this the right approach or your child?” takes a backseat to the pressing issues of the vent and the drips and the day to day medical management. Just because it is an understandable position doesn’t make it right.
At the same time clinicians are grappling with feeling unprepared and uncertain of how to communicate, we have parents saying, “we need information from our child’s care team so that we can know what is going on, have time to process it and understand it, and be able to feel that we are helping make to most appropriate decisions for our child.” They want information given in smaller portions, in lay terms, on a regular basis.

As a parent is quoted in a study by Elaine C. Meyer and colleagues, “Listen. Answer all questions. Give all information—parents can handle it. What we cannot handle is not knowing what is going on. If something is going wrong, tell us.”
Is anyone else getting that sinking gut feeling?

Back to the Sanderson’s study and article. Sanderson and her colleagues David Zurakowski and Joanne Wolfe wanted “to identify clinician attitudes regarding the meaning, implication, and timing of the DNR order for pediatric patients.” Literature exists for adult populations, but this was the first specifically targeted at the pediatric realm.

What they found is disconcerting. Although about 2/3 of those surveyed -- physicians as well as nurses-- stated that “a DNR order indicates limitation of resuscitative measures only in cardiopulmonary arrest,” the other 1/3 “considered the DNR order to be the threshold for the limitation of treatments not specifically related to resuscitation.” Finally, about 6% of those surveyed “believed that a DNR order implies that only comfort measures are to be provided.”
Let that sit for a moment.

I’m sure most of us have had the experience of being called on a patient and hearing something that begins, “Well, she’s a DNR, but I went ahead and checked her vitals anyway and she has a fever of 102.” The implication of that phrasing, or variants of such phrasing, are that since the patient “is” a DNR (it’s a new species, look it up) that routine evaluation and management of non-cardiac arrest scenarios is to be discontinued. I cringe when I hear this call, and cringe more reading the misguided implications of the DNR order in adult, and now, in pediatric literature.
Perhaps the failure to have adequate communication upstream leads to consequences in care downstream when DNR orders are, as was found in Sanderson’s study, perceived to affect care beyond response to cardiopulmonary arrest.

How does this happen? How does a DNR order become a signal of “comfort care only?” Or lead to an assumption that it might include “limitation or withdrawal of diagnostic and therapeutic interventions?” Theory: Given the discomfort that pediatric providers have with communication near the end of life, but also their desire to protect their patients from what might be seen as a futile intervention, a conversation about a DNR order might be a proxy for a “bigger” conversation. It becomes a sort of substituted goals of care conversation, in which decisions are made and judgments potentially assumed, but in which that critical element of mutual understanding between all parties involved remains lacking.

There has been a growing demand for increasing education aboutcommunication at the end of life and palliative care to pediatric residents, but it is slow to gain steam in training curriculum already tightly packed to fit into three years. And this does little to address the needs of practicing pediatric providers, doubly frightening since they are the ones training the future providers. It is a need that, no matter how far we advance in the world of medicine, is going to remain. Sad as it is, difficult as it is, unfair and tragic as it is: children are going to die. These children and their families deserve care providers who can as deftly handle end of life care as they do handling vaccination schedules or chemotherapy regimens or DKA.
As a parent, the idea of something medically horrible befalling one of my children is almost too much to bear. The idea that I might be left in the dark about his condition or prognosis and not have the information I need to make the best decisions for my child and our family is another layer of suffering I don’t think I could tolerate. When the unthinkable happens and a parent is kidnapped into that “cellar room” that Lorrie Moore described,  she needs to hear voices from the outside telling her what is going on throughout her time in the cellar, not just when it is about to be flooded or set ablaze. And though no one can truly get into that cellar room with her, they can open windows into it, hold a hand through it and promise not to let go.  

For those providers who don’t feel they can do it, there are providers out there who can and will. There are those of us passionate about pediatric palliative care here to guide and support our professional colleagues just as much as we are here for the patients and the families.  We know that sometimes the providers feel like they are in their own cellar room, and we care about our professional colleagues as well as patients and families. We can’t help you if you don’t let us, though, and even though it can be hard to ask for help, consider the alternative. Consider the patient and her family. Consider that perhaps after having a palliative care provider there with you a couple of times, you will be able to feel confident and comfortable enough to handle the next one on your own. And then maybe teach others how to do the same…just like an invasive procedure in which you “see one, do one, teach one,” the end of life or advanced care planning or code status conversation(s) are skills that need to be honed and practiced…and then TAUGHT.
The burden isn’t just on pediatricians to ask for help from their palliative care colleagues, though. For those of you adult palliative care providers out there, don’t think you can weasel your way out of this: you are needed as well, and yes, you CAN handle working with young patients.  Just as pediatricians shouldn’t opt out and say “but I’m a pediatrician, I don’t do death,” you adult HPM docs don’t get to say, “But I’m an adult palliative care provider, I don’t do kids.”  We’ve all got to pitch in here.
Really and truly, you can do it. And if you run into a question or a problem along the way, guess what, the pediatric palliative care community is pretty small, and we are generally very nice,  and we LOVE to help our colleagues. You can email us (I’m or or call us or hop onto our listservs. AAHPM has a Pediatrics SIG. CAPC has an entireforum board for pediatric palliative care issues. The American Academy ofPediatrics has a SIG for pediatric palliative care. The NHPCO has a section onpediatric palliative care. We live on Twitter as #PedPC.  I’m missing other routes and organizations here, so if any one reading this wants to add to the comments, please do. Basically, we want to shout “Help us help you!”
If we can work together, everyone will stand to benefit.

ResearchBlogging.orgSanderson A, Zurakowski D, and Wolfe J (2013). Clinician Perspectives Regarding the Do-Not-Resuscitate Order. JAMA Pediatrics PMID: 23979224

Other cited works:

Beach, M. C., and Morrison, R. S. (2002). The effect of do-not-resuscitate orders on physician decision-making. Journal of the American Geriatrics Society, 50, 2057-2061. (Open Access PDF)

Longden, J. V. (2011). Parental perspective of end-of-life care on paediatric intensive care units: a literature review. Nursing in Critical Care, 16(3), 131-139.

Meert, K. L., Eggly, S., Pollack, M., and Anand, K. (2008). Parents’ perspectives on physician-parent communication near the time of a children’s death in the pediatric intensive care unit. Pediatric Critical Care Medicine, 9(1), 2-7. (Open Access PDF)

Durall, A,, Zurakowski, D., and Wolfe, J. (2012) Barriers to conducting advanced care discussions for children with life-threatening conditionsPediatrics, 129(4), e975-e982 (Open Access PDF)

Photo credits: 
Birds: Audubon "Illustrated Birds of America"
Bridge: Emily Riegel Personal 
Child: Emily Riegel

*Links are Amazon Affiliate Links.  Any proceeds from sales using these links support Pallimed outreach efforts.  

Tuesday, September 24, 2013 by Emily Riegel ·

Friday, September 20, 2013

Australians Don't Like Polypharmacy, What About You?

Patients attending an ambulatory consulting service in Adelaide, Australia were queried regarding their feelings about stopping medications, and the results were reported in JAGS recently.  The subjects, age 71 on average, were taking an average of ten medications.  Most subjects thought they were taking a "large number" of medications and 92% said they'd be willing to stop one or more medication "if possible."
Licorice Bridge Mix?
Big shocker for Pallimed readers, I'm sure. Who wants to take ten medications?

This survey included a geriatrics population and was published in a geriatrics journal.  But if you practice palliative care or see patients with limited prognoses, you should take heart in the notion of slashing medication lists, especially when you can see no clear indication for the medications.  I'm looking at you, primary and secondary preventative medications. 

A few hypotheses for why it's so difficult for some physicians to discontinue medications:

  1. Inertia:  It's easier to continue with the status quo.
  2. It may require a discussion about overall prognosis:  "Wait a second, doc.  My doctors have been telling me for years to take that orange pill.  Are you sure it's OK to stop now?"  In other words, patients want to do the right thing, even if that means being burdened with taking a boatload of meds.  This is evidenced in the JAGS study by the fact that 71% of patients said they'd accept taking more medications, if necessary.  However, if a prognostic discussion has occurred (e.g. related to advanced cancer, etc), it's then easier to say "I think that medication has done it's job, I admire your commitment to taking it, and now it's OK to give it a rest."
  3. Overestimation of actual benefit of medications: "He had an NSTEMI five years ago.  What if we stop the simvastatin and he has another MI? Sure, he's probably going to die from lung cancer in the next several months, but I don't want him to die from an MI. No, he's not having any coronary artery disease symptoms now, but I think it's best just to continue it."   Look at a meta-analysis of several studies evaluating the benefit of statins for primary and secondary prevention of cardiovascular events.  The number needed to treat to prevent one major coronary event was 28, which isn't horrible.  Yet it's not exactly dooming your patient to angina/MI before he dies, especially if you consider that the five studies evaluated in the meta-analysis followed patients for 5-6 years to look for the outcomes. 
I'm always careful to decide whether discontinuation of medications is within my purview as the palliative care consultant.  Is the patient burdened by the polypharmacy?  Do they have dysphagia?  Are they having side effects?  Are you concerned about interactions with other, more important medications?  Is the patient or family having trouble obtaining medications? Does it just plain not make sense for the medication to be continued because of the patient's prognosis?   If the answer is yes to any of these questions, I think it's well within your purview to recommend discontinuation, even if it's an unexpected recommendation from your referring physician.  In making the recommendation, I'd highlight the rationale from a palliative care standpoint.  Focus on the quality of life aspect. 

Use a shared decision-making approach with patients.  Even though it's OK to discontinue meds, it's also OK to not be dogmatic about it if the patient prefers to continue the med (as long as it's not harming them).

As hard as it is to stay on top of the deluge of new research (just even in your own specialty), it also never hurts to remain aware of research regarding the indications for primary/secondary prevention.  A good example would be a recent cohort study from the Annals of Internal Medicine which suggests the optimal BP in patients with chronic kidney disease may be 130 to 159/70 to 89 mm Hg, with patients in that group having lower mortality rates. 

If you're reading this, you're probably part of the choir already.  If so, here's a pat on the back to you for being vigalant about polypharmacy!

For more related to this topic, see my post from a few years ago about "Minimally Disruptive Medicine" (and some other related links in that post).   

Edit 9/22/2013:  Also, I just found some recent American data published in Journal of Palliative Medicine on statin use near the end of life in patients with cancer (along with a letter to the editor on the JPM study). Bottom line: Statin use common in this population right up until time of death, unclear how appropriate the use is in each individual patient, but opportunities to deprescribe were likely missed. 

Friday, September 20, 2013 by Lyle Fettig ·

Thursday, September 12, 2013

Predicting Survival After CPR: Can we GO-FAR?

JAMA Internal Medicine (JIM, you'll always be Archives of Internal Medicine to me) has published a study of an outcome prediction tool for in-hospital cardiac arrest. Specifically, a tool to predict the rates of neurologically intact survival after an in-hospital arrest. The developers of the tool call it GO-FAR (Good Outcome Following Attempted Resuscitation).

One could imagine ways of re-titling it FORe-GO, if one chose to spend one's time imagine such things.

This is the best tool of its kind that I've seen, although one needs to be very clear about what it's actually predicting.

The paper mostly describes, in detail, the derivation and validation of the tool. I won't belabor this - they did a good job of it, used a large dataset, created a model, tested and validated it to get the best receiver operator curve, etc. The data come from the massive, US-based, 'Get With the Guidelines Registry' (which used to be called the National Registry of Cardiopulmonary Resuscitation). The GWGR collects standardized data on in-hospital cardiac arrests from 366 hospitals in the US (all types and regions of hospitals) (the national rate of CPR survival to discharge of 18% which most of us are aware of comes from the GWGR). The GO-FAR data come from arrests between 2007-2009 (51,000 patients).

Worth belaboring, because this is critically important in understanding if one chooses to use this as a tool to help patients understand CPR outcomes, is how they defined a good outcome: a Cerebral Performance Category (CPC) of 1. CPC of 1 means:

"The patient is conscious, alert, and able to work but might have mild neurologic or psychological deficits (such as mild dysphagia or minor cranial nerve abnormalities). Patients with a CPC score of 2 have moderate cerebral disability and are able to live independently and work in a sheltered environment. Disabilities may include hemiplegia, seizures, ataxia, dysphagia, or permanent memory or mental changes. Patients with CPC scores of 3 through 5 progress through severe cerebral disability, coma or vegetative state, and finally brain death." 
This is important because while I'll venture to claim that nearly everyone would agree CPC scores of 3-5 are dismal outcomes, I think there could be a substantial number of people for whom a CPC of 2 would be acceptable. Not welcomed, not a 'good outcome' (which is, granted, what the researchers here are trying to predict), but better than death for some. So to be clear, the GO-FAR tool predicts rates of survival to hospital discharge with a CPC of 1, every other outcome from a CPC of 2 to death are lumped together as bad outcomes.

GO-FAR is being explicitly developed to help inform discussions at the time of hospital admission, so they deliberately excluded patient/CPR characteristics which predict outcomes but wouldn't be available necessarily to the admitting clinician (such as initial rhythm after arrest, site of arrest as someone may be admitted to the floor then transferred to the ICU prior to arresting). The characteristics which survived their analysis and were included in the final index are below. They very nicely also mentioned what the overall survival to discharge with good outcome was in all of these categories (remember, this is not overall survival, this is survival with a CPC of 1). The overall survival with good outcome rate for the entire dataset (all-comers) is 10%. 
  • Neurologically intact/minimal deficits at time of admission - CPC of 1 (this predicted a better outcome; everything else here predicted worse outcome) (18%)
  • Major trauma (reason for admission) (6%)
  • Acute stroke (reason for admission) (3.7%)
  • Metastatic solid tumor or any hematologic malignancy (5.2%)
  • Septicemia (basically they mean active bacteremia here; not the sepsis syndrome) (3.6%)
  • Medical non-cardiac diagnosis (reason for admission; ie, patients admitted with cardiac conditions did better) (5.6%)
  • Hepatic insufficiency (bilirubin greater than 2mg/dl or AST more than 2 times the upper limit of normal) (4.4%)
  • Admitted from a skilled nursing facility (3.2%)
  • Hypotension or hypoperfusion (5.9%)
  • Renal insufficiency (creatinine over 2mg/dl) or dialysis (6.4%)
  • Pneumonia (5.2%)
  • Age over 70; the older the worse the outcome (10.2% 70-74 down to 4.5% for over 85 years).
Basically these categories are assigned points, and depending on your score, GO-FAR assigns you a percentage rate of a likely outcome (e.g, 'dismal' less than 1%; 'terrible' 1-3%; 'average' 3-15%; or 'above average greater than 15%). The receiver-operator curve for the final model was 0.78 which is good.

The authors point out that one of their worries with this prediction tool is that it is most likely to, if anything, overestimate good outcomes because all the data come from patients for whom CPR was actually attempted (e.g., patients who had DNR orders who were probably sicker as a group than the full code patients are not reflected in these data, by definition, since they didn't have resuscitative attempts.) 

The authors note they are making an on-line GO-FAR calculator, but it's not yet available (the paper's only been e-published and one wonders if they are trying to get it done in time for the print publication). 

The tool is clearly being created as a clinical tool for patient education, particularly at the time of hospitalization. Clearly, if one chooses to use this, it's important to know that it's aimed at answering the question "What are my chances of coming out pretty much normal?" (not what are the chances of mere survival, which are probably very roughly double the 'good outcome' rates). I obviously need to see the calculator, but can imagine using it to inform my discussions with patients. 

In working with residents, I frequently sense a lot of angst about not feeling facile with CPR outcome data, and what I have historically told them (without getting much sense that they've found this helpful) is that the national survival rates are 18%, about half are neurologically intact; and the patients for whom you personally worry about, think a DNR order is medically indicated because such an intervention is so unlikely to help - the good outcome rates are much worse. The GO-FAR tool is likely going to be a big step in clarifying just how much worse those outcomes are. Perhaps the residents will have less angst with this than my imprecise (but accurate, dammit) hand-waving.

Which brings me to the accompanying editorial, which is one of the best things I've read all year, and has very little to do with the GO-FAR paper itself.

Essentially it is a plea for two (interrelated) things.

One, is that we in medicine, hospitals, etc. need to stop treating CPR as something special (i.e., as a default action, as something that is a genuine medical option 'even when its therapeutic potential is remote.') It's basically the only thing in medicine we treat this way, like its a sort of human right, as opposed to a complicated medical-procedural intervention with indications and contraindications, good reasons to do it, and good reasons not to. Ie, a patient having a cardiac arrest is not the sole indication for attempting CPR. 

The second recommendation is that, in this context, hospitals start looking at CPR attempts from a QI standpoint beyond the technical aspects (time to initiate compressions, how closely the attempt followed guidelines, etc). Important stuff, but inadequate. The editoralist argues quality assurance committees must start looking at questions of whether there was an indication for CPR in the first place, if not, why was it offered/why didn't the patient have a DNR order, why weren't people discussing this with the patient/family, etc. 

Is anyone aware of QI committees looking at these aspects of resuscitation efforts in their hospitals?
Ebell MH, Jang W, Shen Y, and Geocadin RG (2013). Development and Validation of the Good Outcome Following Attempted Resuscitation (GO-FAR) Score to Predict Neurologically Intact Survival After In-Hospital Cardiopulmonary Resuscitation. JAMA Internal Medicine PMID: 24018585

Thursday, September 12, 2013 by Drew Rosielle MD ·

Monday, September 9, 2013

Prescribe Long Acting Opioids? You Must Know About REMS

Here is the simple version:

If you prescribe long acting opioids then you (and all your prescribing co-workers) should sign up for the FREE FDA/DEA mandated REMS training hosted by AAHPM on September 10th (yes, tomorrow!) andOctober 11th.

Here is the (semi-)long version:

The FDA and DEA have noticed the public health risk caused by long acting opioids being used inappropriately.  One part of their remedy is to increase training for prescribers of opioids.  The AAHPM along with 9 other interdisciplinary organizations (Collaborative on REMS Education CO*RE) are working to provide the educational activity.  This training takes place over two days: September 10th and October 8th.

We have covered REMS on Pallimed previously: here, here, and here.

If you are worried that you cannot make these dates for training, you can always look for more live and online training resources from the CO*RE website under Educational Opportunities.

If anyone has taken a CO*RE class we would love to hear feedback.  It will be interesting to see how this does (or does not?) affect the growing challenge of misappropriation and misuse of opioids, which are a powerful and important therapeutic class of medications for hospice and palliative care clinicians to have available.

Don’t forget to register and tell your peers who prescribe, otherwise you might be the only REMS certified prescriber in town, and I don’t think you want to imagine that future.

Monday, September 9, 2013 by Christian Sinclair ·

Take the Survey on HPM Burnout

In the previous post you learned about the long journey of research.  Well now is your time to contribute.  Researchers from the Duke Clinical Institute have been reaching out this summer to look for participants of all disciplines to participate in this survey on stress and burnout in hospice and palliative medicine.  So take 15 minutes (now, because you know you wont get to it later) and finish this quick survey.  And then if you really want to earn a gold star, forward it to people in the field with a personal endorsement. (If you already took it earlier this summer, do not take it again.)
Dear Colleagues,

We at Four Seasons and Duke University are asking for your voluntary participation in a research study questionnaire on work stresses and burnout. Similar to studies conducted in other fields like internal medicine and oncology, we aim to aggregate the responses of several palliative medicine and hospice colleagues in this IRB-approved survey to understand what our colleagues are experiencing in daily practice. These aggregated results will be used to comment on the state of burnout in our discipline currently and inform future strategies to prevent and address this.

There are 29 questions in this web-based confidential survey. We anticipate this short survey will take less than 15 minutes of your time. By completing this survey, you are consenting to participate in this study. No identifying information will be collected or reported. At the end of the survey, you may answer an optional question to provide your email address and indicate an interest in being contacted in the future for more in-depth thoughts on burnout in our field. Other than contributing to our field's knowledge in this area, there are no other benefits to participation.

We anticipate to publish the aggregated findings. The link to the survey is at:

Thank you for your time. We look forward to receiving your responses.

Janet Bull MD FAAHPM
Arif Kamal, MD, AAHPM Research SIG Chair
Amy Abernethy, MD FAAHPM, AAHPM President
This survey was reviewed and approved by the AAHPM Research Committee, SCC and Board of Directors.

by Christian Sinclair ·

The Long Journey of a Research Article

 Most health care providers are in a hurry and have little time to devote to reading medical articles. Often browsing just the title and summary, they want to know, “what does this mean for me or my patients?” They have little time to get into the details of how the study was done, who participated, or even the results. This short post is an attempt to demystify the research process to encourage health professionals to seek more from the studies they read and to pass on these findings to others in the field who can make a difference. As an illustration, I will use a recent publication from our research team that appears online at the Journal of Pain and Symptom Management, “I’m not a doctor, and I don’t know if I helped her go faster or slower”

The research, funded by a government grant, began long before the article was published. Our team began thinking about and writing the proposal for funding in the fall of 2008. It was submitted to the National Institutes of Health (NIH) six months later, where it was reviewed by experts. These people were skilled scientists with a wide variety of knowledge and experience. They returned our proposal to us with recommendations for improvement; research proposals are rarely funded the first time without changes. NIH accepts proposals on three dates each year, so we revised and resubmitted our proposal at the next possible opportunity. It was reviewed positively in February 2010. At NIH, reviewers give proposals scores – and this time our proposal’s score was good enough to be funded! We were finally awarded funding (that is, given the money!) in July 2010. By that fall we began gathering the data. Finally, two years later (Fall 2012) we had sufficient data and findings to write our paper. FIVE YEARS from the initial proposal requesting funding to data collection to data analysis to paper writing to publication.

Getting funding to do research and collecting data is hard work, but just the beginning! Analyzing the data is an important process and, in this case, involved the participation of our entire research team. We all read and interpreted interviews that had been typed up. As first author, I integrated the work of the others into a first draft of the manuscript. After many emails and drafts, the team submitted our article to the journal. The journal then sent the paper to three experts who carefully read the paper and made several recommendations aimed at improving our paper. This “peer review” is a very important part of the process, and helps maintain high standards for research publications. Based on these recommendations, our team revised the paper and sent it back to the journal. The journal approved of the changes we made, and the paper was published online May 2013, six months after initial submission.

It is gratifying to know that peer-reviewed research has scientific credibility, but the real test is whether or not it makes a difference in the lives of patients and families. For example, our study has considerable more value if it gets into the hands of hospice staff, the ones who, on a daily basis, can help caregivers manage the pain of their dying loved ones. But many hospice staff never read medical journals, and are often unable to attend conferences, another place where the results of studies like ours are presented. In short, research findings need to translate to the bedside. Years of hard work to produce information that can improve practice deserve attention. As scholars who produce research findings and health care professionals who read them, we have a responsibility to share important results to those who can implement them.

This post was written by Debra Parker Oliver with contributions from The Caregiving Network Research Team (Elaine Wittenberg Lyles, Karla Washington, Robin Kruse and George Demiris)

Photo Credits: Unknown

by Debbie Parker Oliver ·

Friday, September 6, 2013

Cases: "Do you have something stronger than this dilaudid?" The case for opioid rotation

 Personal details in the case have been altered to protect patient privacy. These cases may reflect a composite image of many different cases to illustrate a teaching point.

Mr LM is a 59-year-old with NSCLC (non-small cell lung cancer) and metastatic disease to his mediastinum and left chest. He was admitted to the hospital for increasing right sternal chest pain over the past month. Pain is described as burning and non-radiating. There are no exacerbating or relieving factors. The pain is so bad that he has anorexia. The month prior to admission, he was started on Oxycontin, and his dose was titrated up 160 mg twice a day with Dilaudid 8 mg every 3 hours PRN (as needed). Despite dose escalation, his pain was unchanged. While in the hospital, a fentanyl patch and a dilaudid PCA (patient controlled analgesia pump) were added to the original regimen. However, no increased analgesia occurred.

A palliative care consult was obtained. His regimen was simplified to a Dilaudid continuous intravenous infusion (CI) and PCA. Doses were escalated to 4 mg/hour CI and 4 mg PCA with 8 mg RN dose q1 hour. He reported no change in his pain. Co-analgesics of NSAIDS, Tylenol, dexamethasone, and a TCA (tricyclyic anti-depressant) were tried. Radiation oncology was consulted and saw no lesions to irradiate. The patient began to complain of worsening pain. As he continued to complain of 7-10/10 pain, the patient was changed to morphine and titrated to 10 mg continuous infusion and 10 mg PCA dose. Marked analgesia was noted. Attempts to transition to methadone were unsuccessful, as his need for morphine PCA doses remained unchanged. Despite initial complaints of sedation on morphine, the patient’s pain scores decreased to 3/10. As such, he was continued on morphine and discharged from the hospital on a PCA.


Opioid rotation, or trial of an alternative opioid, is commonly practiced when a patient’s pain responds poorly to one opioid or intolerable side effects develop. These intolerable side effects may include nausea, vomiting, sedation, or even hyperalgesia. Although rotation is a common practice, a Cochrane review in 2004 found that evidence to support the practice for opioid rotation was anecdotal and in non-controlled studies. Randomized trials were suggested. Since that time, several prospective studies have been performed where opioid analgesic effect was inadequate or side effects to the opioid were intolerable. Studies by both Narabayashi et al. and Wiraz et al. investigated rotation to an alternative long acting opioid, dilaudid or oxycodone. In addition, patients had increased analgesia compared to the prior regimen. Often the effective equianalgesic dose in these studies was greater than the prior dose, suggesting that prior side effects may have been dose limiting. More is being learned about the pharmacokinetics and pharmacodynamics behind opioid metabolism. It is clear that there is variability between individuals. Some of this may be secondary to disease states (i.e. renal or hepatic impairment), or the effect on metabolism by other drugs. Other differences are due to genetic variations.

Inherited differences in opioid receptors, channels, and metabolism to active and inactive compounds have been found. These differences may extend to transporters effecting bioavailability from the GI tract to even penetration of the blood brain barrier. This variability may account for differences in effectiveness and side effects from one patient to another. For example, “non analgesic responders” to methadone were found to have lower blood levels of the drug when compared to the same dose with “responders.” This suggests that the “nonresponders” may actually just clear methadone faster. It is frequently cited that 5-10% of the Caucasian population has the inability to convert codeine to its active metabolite, making it an ineffective medication in those individuals. Differences in metabolism have also been found with tramadol and oxycodone. In trying to obtain adequate analgesia with these medications, large doses may be tried with the development of side effects.

When switching to a different opioid, it is recommended to decrease the dose by 25-50% and even greater when switching to methadone. The rationale behind this has been “incomplete cross tolerance” and the concern that a patient may be more sensitive to the side effects of the second opioid, especially sedation. Understanding possible individual genetic variability, gives this practice even more credence.

Mr. LM was tolerating 20 mg IV dilaudid /hour without analgesia. His basal rate of 4 mg/hour dilaudid may be equianalgesic to 20-30 mg IV morphine hour. Given his profound tolerance to IV dilaudid and oral oxycodone, a conservative CI of 7 mg morphine/hour was started with frequent PCA doses available. Even with sub-equianalgesic dosing, he noted marked analgesia.

When doses of an opioid are escalated without apparent benefit and/or with side effects, opioid rotation should be considered. An individual’s biochemistry may determine if a particular opioid regimen will be successful and tolerated.


1. Smith, Howard S. “Variations in Opioid Responsiveness.” Pain Physician 11:237-248, 2008. (Open Access PDF)

2. Narabayashi, Masaru et al. “Opioid Rotation from Oral Morphine to Oral Oxycodone in Cancer Patients with Intolerable Adverse Effects: An Open- Label Trial.” Japanese Journal of Clinical Oncology 38: (4)296-304. 2008

3. Quigley C. Opioid switching to improve pain relief and drug tolerability. “Cochrane Database of Systematic Review 2004”, Issue 3. Art. No.: CD004847 DOI: 10.1002/14651858.CD004847.

*Slight editorial changes were made for readability.

Original Case by Tamara Sacks, MD, Edited by Christian Sinclair, MD

Pallimed Case Conference Disclaimer: This post is not intended to substitute good individualized clinical judgement or replace a physician-patient relationship. It is published as a means to illustrate important teaching points in health care.

Friday, September 6, 2013 by Christian Sinclair ·

Thursday, September 5, 2013

ASCO and AAHPM Team up on Quality Improvement

“I’m seeing the road that I’ve traveled
A road paved with heartache and tears
And I’m seeing the past that I’ve wasted
While watchin’ the bubbles in my beer”
- Bob Wills

I’ve always preferred Bob Wills’ “…bubbles…” to Don Ho’s “Tiny Bubbles”. The former always feel more contemplative, but also remind me to continue to break out of the doldrums…the usual…don’t take the world as it sits today as the way it will always be. For those looking to break new ground and collaborate on enhancing palliative care in the community, a new opportunity is getting underway. The American Society of Clinical Oncology (ASCO) in collaboration with the American Academy of Hospice and Palliative Medicine (AAHPM) is embarking on a Virtual Learning Collaborative pilot to improve the delivery of palliative care in oncology practices.

This multiyear project will encourage oncology practices to develop evidence-based approaches to palliative care and to use proven quality improvement techniques to do better each day than the day before.
Applications are being accepted through the end of September from practices that are registered for ASCO’s Quality Oncology Practice Initiative (QOPI). Teams, including a physician-champion and other leaders, from 25 practices will be selected to participate in this pilot.

Visit this link to learn more about the program:

What does this mean to the Pallimed reader?

Reach out to oncology practices with which you work today, or with which you would like to collaborate. Ask them if they are ASCO QOPI practices…are they thinking about this learning opportunity…and would they like a date?

To learn more about this project or about ASCO’s QOPI program send a note to Sometimes you have to leave the bubbles to do their thing, and get up off the bar stool, and make a difference in this world. This just might be that opportunity.

Thursday, September 5, 2013 by John Hennessy ·

The Bereavement Counselor: Public Misperception

(Please welcome Rea Ginsberg, LCSW-C, ACSW, BCD to Pallimed. She is a retired Director of Social Work Services and Hospice Coordinator. She has extensive experience working with both children and elderly adults mostly in hospitals and long term care facilities. - Sinclair)

I’ve learned that people will forget what you said, People will forget what you did, But people will never forget how you made them feel.
-- Maya Angelou

We are often asked, How can you do that? How can you stand to do that work? Such a dreary subject. Grim but supposedly necessary. Don’t you get depressed with all the talk of dying? Facing death and its consequences every day must be the prime route to burnout. Are mental disorders prevalent among grief counselors? Aren’t you afraid all the talk of dying will make you a little crazy? Don’t you find it frightening, talking about death and dying all the time? Don’t you want some joy in your life? Do something else, anything that doesn’t relate to death.

What were they thinking? Grief counselors seem to have a mournful reputation.

Look below the surface. Our society does not like pain in general. We do not appreciate it. We do not want confrontations with it. We have a national aversion to it. We are busy developing a pill or procedure for every manner of pain, physical and psychic. If it hurts, then by definition it is bad and requires fixing. We are determined to find a surefire anti-aging formula that will also extend our lives forever. Cryogenics? Yes. It shows promise. Really intriguing, actually very exciting, but it is not yet ready for wide use. It could be a future plan. Think forward to pain-free existence. But when?

In our society, death is a painful subject for the patient and for the family. It is an unacceptable outcome of care, health care. We don’t like it. We are inclined to do everything possible to avoid it, even when the alternatives bring far worse health and increased suffering to the patient. Overall, we still prefer to avoid and deny death in our national and personal conversations. Let’s change the subject and be happy. After all, in our American tradition we are entitled to happiness – plus life and liberty. In our attitude, we presume to live forever. It is just easier that way. Finding the easiest way is our American goal. No pain, no awkward planning, no scary discussions, no sad thoughts about loss. We like to live in a wish-fulfillment bubble, a place where death does not happen. Not to ourselves, not to those we love. No talk of tears and fears and sorrow.

The only trouble is that a pain-free life is impossible. For all our pushback and passionate hopefulness, the search is in vain. Pain is inevitable in every human life. Like it or not, wish against it or not, there it is. Pain waits patiently and outlasts our resistance. It is a fundamental fact of life. Death is also a fact of life, a fact until further notice. Significant loss occurs in every life. Death occurs to every life. Death hurts. It causes grief. There is yet no pill to make it go away. Maybe there should not be such a pill. Enter: the supportive grief counselor.

Survivors need interpersonal help and healing. Usually, friends and family do the job. The path is painful and also lonely at times. Sometimes, a professional counselor is just the right remedy. He is prepared to be a companion for a time, along the way to reconstructed balance and equilibrium. Along the way to adjustment. He is equipped to hear the hurt and lighten the load. In a hurry-up, get-over-it society, the grief counselor is a safe harbor in the mourning storm. His focus is not time. It is not a predetermined schedule. It is not a deadline for completion. His focus is connection, understanding, and support. It is helping the survivor to feel comforted because someone who knows grief is actively listening. The center of his attention is less advice and more the not-so-simple act of being with the survivor, to facilitate self-rediscovery and restore dignity.

Psychologist J. William Worden writes, “When unanticipated or incongruous events such as the death of a loved one occur, a person needs to redefine the self and relearn ways to engage with the world without the deceased. The person cannot return to a pre-loss level of functioning but learns how to develop a meaningful life without the deceased loved one.…Death can challenge one’s assumptions about the world (spiritual adjustments) and one’s personal identity (internal adjustments).”

The power to heal psychic wounds is rare and precious. Few people have this skill. It is needed. It is a service. It becomes a moral obligation for those who have that power. To have it is to take pleasure in exercising it. To have it and withhold it is unethical. It is contrary to conscience. It defies accepted standards of professional behavior. It is also unhealthy because there is nothing more important in life than human connection. To assist the progress of connection provides further integrity and growth to the facilitator. The grief counselor is rewarded in greater wholeness, in life lessons studied, learned, and integrated. Death is not an enemy. It is a creative disrupter. It is one of our most profound and valuable teachers. It is life-affirming. It is our gateway to meaningful and vigorous life.

Emergency physician Monica Williams-Murphy comments similarly, from a slightly different perspective: “What human would rob another of the most touching and beautiful moments of life?.…Death…allows us to cherish both life and time more fully.”

Dreary? Depressing? What were they thinking…?

1. J. William Worden, PhD, “Introduction,” Grief Counseling and Grief Therapy, fourth edition, New York: Springer Publishing Company, 2009.

by Rea Ginsberg ·

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