Friday, October 5, 2018

On Football, Palliative Care, and Quality Measurement

by Arif Kamal (@arifkamalmd)

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

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

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

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

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

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

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

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

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

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

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

I hope to see you there!

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

Friday, October 5, 2018 by Pallimed Editor ·

Wednesday, October 3, 2018

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

by Polly Chester

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

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

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

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

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

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

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

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

Wednesday, October 3, 2018 by Pallimed Editor ·

Monday, October 1, 2018

Challenges Faced by Blended Families at End of Life

by Lizzy Miles (@lizzymiles_MSW)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, October 1, 2018 by Lizzy Miles ·

Friday, September 28, 2018

The Power of a Pause

by Kayla Sheehan (@kksheehan)

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

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

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

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

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

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

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

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

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


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

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

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

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

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

Friday, September 28, 2018 by Pallimed Editor ·

Wednesday, September 26, 2018

Conference Review: PainWeek 2018

by Rabia Atayee (@RabiaAtayee)

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

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

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

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

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

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

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

Photo credit: Courtesy of Rabia Atayee

Wednesday, September 26, 2018 by Pallimed Editor ·

Monday, September 24, 2018

Alcohol Pad = Aromatherapy = Nausea Relief?

by Bob Arnold (@rabob)

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

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

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

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

On to the evaluation questions:

Was this study valid?

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

Were the results clinically important?

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

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

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

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

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

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


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

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

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

Monday, September 24, 2018 by Pallimed Editor ·

Sunday, September 23, 2018

Building Resilience through Contemplative Care

by Ann Allegre

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

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

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

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

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

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

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

Image credit: Photo by Jiroe on Unsplash

Sunday, September 23, 2018 by Pallimed Editor ·

Friday, September 21, 2018

International Palliative Care Education - EPEC-Peds

By Stacy S. Remke (@StacyRemke)

In about 2004, our program embarked on a regional pilot project to teach healthcare workers – doctors, nurses, social workers, chaplains, and others – to provide pediatric palliative care. Our region is the Upper Midwest: Minnesota, Iowa, Wisconsin, North and South Dakota. “Join pediatric palliative care,” we joked, “and see the world!!”

Little did we know.

From these first steps began a truly humbling and inspiring journey across many continents and into many communities.

Much of this started when a project I was involved with – Education in Palliative and End of Life Care for Pediatrics* (EPECPeds) – launched. The larger world was very interested in a flexible, curriculum to scale pediatric palliative care services. Groups from India, South America, the Pacific Rim, and an Isreali-Palestinian initiative among others invited us to teach and most importantly to train others to teach. When I travel I also look up palliative care friends I have met along the byways and see what their work is like. From these travels and workshops, relationships formed. Lively discussions erupted. What does pediatric palliative care look like in other countries? How has it evolved? What are the lessons learned to help, and ones to avoid?

As a social worker, people usually ask me about mental health, psychosocial and bereavement support considerations. These are especially tough questions when one knows little of the cultural context, perceptions of, and approaches to mental health, or the resources available to address the needs. In India, the first question families are asked when a new diagnosis is made is “how much money do you have?” The second question is “what do you want the patient to know?” Collusion between the physician and the extended family about how much (if anything) to tell the patient, is common and expected. It is important to account for and adjust to these differences. But some things are universal. I was recently in Singapore, working with a pediatric palliative care team. On several home visits, I saw devoted families providing exquisite loving care.

International work can leave haunting memories too. In the aftermath of Hurricane Haiyan, in the Philippines, I volunteered near the community health center’s “intensive” care unit for the sickest patients. This small room with dirty green walls and sputtering florescent light held two narrow cots and a gurney, a large rusty O2 tank, and a cabinet. I observed a girl no older than 13 handbagging an elderly man lying on a gurney. In the other corner, an elderly person was huddled against the edge of a cot, hopefully sleeping. As I peeked into the room, the girl turned to me with an expression of great anxiety and distress. She did not break rhythm in her bagging task. I asked the physician about the scene, who explained that family members often must provide such care as no other resources exist. She expected this elderly cancer patient would die within a few days. I asked about discussing a do not resuscitate order or advanced care planning. She said no, that would happen with the oncologist at the regional cancer center…3 hours away. All I could hope for was that the grandfather wouldn’t die during this young girl’s shift at the bedside.

These international adventures in palliative care can be enriching and maddening all at once and are likely to change us in ways we do not expect. For me, I no longer take for granted the tremendous resources and access people have here in developed countries. Routine illnesses here are life-threatening in other places. What then are the boundaries of palliative care? We apparently can’t take suitcases of morphine to places where supplies are restricted. (I asked!) What can we do then to improve a lot of those living with pain? As a start, make some friends. Go and visit them. Witness love, skill and dedication in action. Be humble. See what you can offer.

By the way, we never did crack North Dakota in our initial pilot effort, but other doors opened. Join the palliative care community and see the world, indeed!

*EPEC-Peds is an NCI funded curriculum and training initiative. PI: Stefan Friedrichsdorf, Joanne Wolfe, Co-I: Stacy Remke, Joshua Hauser

Stacy S. Remke, LICSW, ACHP-SW was a pediatric palliative care social worker for over 27 years and one of the founders of PPC at Children's Hospitals and Clinics of MN. She currently teaches graduate social work at the University of Minnesota, hoping to inspire the next gen palliative care social work community. She is also on the board of SWHPN. When not occupied with all things palliative Stacy can be found wrangling her 108 lb "puppy" Seamus.

Friday, September 21, 2018 by Pallimed Editor ·

Monday, September 17, 2018

Hip Fracture Decisions for Nursing Home Residents with Dementia

by Bob Arnold (@rabob)

Good things come in threes. I was on service this week and saw a patient with Lewy Body dementia in the emergency room after he fell and broke his hip. His niece was his surrogate and trying to decide what to do. She asked me whether he should have his hip repaired. In looking through the literature I came across Sarah Berry’s article “Association of Clinical Outcomes of Surgical Repair of Hip Fractures versus Nonsurgical Management in Nursing Home Residents with Advanced Dementia”. Even better, there was an editorial in the same issue of JAMA Internal Medicine placing the article in context. Second, as I was reading the article, I heard the trauma surgeon talking about the same article with her residents. Finally, this morning I woke up and read Bree Johnston’s fabulous special report in JPM on hip fractures in the setting of limited life expectancy, “The importance of considering goals of care and prognosis”. Yahtzee! (My children would point out that only a true nerd would find this trio of events a cause for celebration). While I would recommend you read both the editorial and Dr. Johnston’s fabulous special report, the purpose of this Pallimed series is to look at the data so I’ll be reviewing Berry’s article.

The aim of the article was to assess outcomes for nursing home residents with advanced dementia who did and did not undergo surgical repair of a broken hip. Advanced dementia was defined as a Cognitive Performance Scale (CPS) of 5 or 6 and diagnosis of “dementia” or “Alzheimer disease.” By outcomes they meant survival (the primary outcome), pain, anti-psychotic use, physical restraints, pressure ulcers, and ambulatory status. The authors used the MDS (Minimum Data Set) assessment and linked this to Medicare claims to conduct a cohort study of 3,083 long-staying nursing home residents with advanced dementia and hip fracture.

They found, as have other studies of nursing home residents with hip fractures, that patients who underwent surgery had lower mortality rates (the literature stressed the importance of surgery within the first 24 hours). While 35% died within 6 months, and 61% within two years, the mortality was significantly greater in patients who did not have surgery. These results were greatest in the first 30 days; 11% mortality with surgery, 30% without surgery, and resulted in a median survival of 1.4 years with surgery versus 0.4 years if the patient did not undergo surgery. Adjustment attenuated the findings, but they remained significant.

Residents who underwent surgical repair also had less pain, less anti-psychotic drug use, physical restraint use and pressure ulcers; although once these results were adjusted for differences between the two groups there were no differences according to surgical repair. Interestingly the inverse probability of treatment waiting models, which adjusted for differences in characteristics before the hip fractures, suggested that there was less pain and fewer pressure ulcers among patients managed with surgery. (I need someone who knows more about statistics than me to explain why two different ways of statistical correction resulted in different secondary outcomes).

So, the question is how I should use these results in my patient:

1. Are the patients in this population relevant to the ones I care for? Well, as a hospital-based palliative care doctor these are exactly the kinds of patients for which I am consulted.

2. Are the outcomes that the authors measured the correct ones? Well, it seems to me that pain, survival, and restraints are all things that my patients’ families want to know about. Sadly, for these secondary outcomes they could only look at one point in time. Also, to have data on the secondary outcomes, the patient had to live at least six months (it has to do with when MDS data is collected). Thus, for a lot of the patients we do not have these secondary outcomes.

3. Were the two groups similar in characteristics prior to the operation? Sadly, the answer is no. Residents treated non-operatively were much more impaired at baseline. For example, 26% of the non-operative residents were completely dependent in activities of daily living as opposed to only 5% of the surgical residents. Moreover, despite the large number of variables in the MDS, it is likely there were differences between the two groups that were unmeasured that led the surgeons to choose not to do surgery. In addition, it is unclear whether the decision to do surgery was based on patient/family preferences. Thus, one does not know if the reason for the difference in outcomes was based on surgery or whether other variables led both to the decision to have surgery and the outcomes. This is a limitation of not doing a RCT. Finally, the outcomes could be due to a self-fulfilling hypothesis. Given the non-surgical patients’ greater illness/morbidity, there may have been a decision only to focus on comfort. Given this, the treatment these patients received was less focused on prolonging life and thus they died sooner. (This would have nothing to do with the impact of surgery on survival or clinical outcomes).

4. Were the circumstances and methods for detecting the outcome similar? The answer here is yes. The MDS is a very complete way of detecting the outcomes of interest. Although pain was evaluated by the health care provider rather than the patients, there is no reason to think that there would be differences based on which group they were in.

5. Was follow-up sufficiently complete? Again, the answer seems to be yes, although as previously noted, for patients who did not live six months we do not have any of the secondary outcomes.

6. Are the differences big enough that I should care? Again, the answer is at least with the primary outcome the difference did seem quite large as noted before, the secondary outcomes, differences, particularly after adjustment, are much smaller.

So, what does this mean? In the end, as Johnston et al. summarized, the decision to have surgery depends a great deal on the surrogate decision-maker’s view about the patient’s quality of life preoperatively and what is most important postoperatively. I have to say that this article would, for many of my patients, lead me to do surgery and continue aggressive palliative care (the increased rate of ambulation postoperatively -10.7% in the patients with surgery versus 4.8% in those without surgery - would be a big factor for many families). While a randomized controlled file would be better, it is unlikely that one will ever be conducted. (I am given pause by the mostly negative data presented by Johnston on hip fracture repair. She points out, for example, there is the Cochran review of five randomized controlled trials that shows no difference in medical complications, mortality or long-term pain in conservative care versus surgery. While this is not a study of demented patients, it made me realize the data is controversial).

A coda: What I and the editorial found distressing were the high rates of pain and the low rates of hospice in severely demented patients even after they have hip fractures (particularly in the non-operative patients). It also was quite curious that the median time to utilize hospice was 56 days. Given this article, I wonder whether hospice should be discussed and/or recommended for all patients who have severe dementia and a hip fracture. This article should lead you to talk to your trauma surgeons and/or orthopedists to develop a routine palliative care or hospice consultation for these patients.

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

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


1. Berry SD, Rothbaum RR, Kiel DP, Lee Y, Mitchell SL. Association of clinical outcomes with surgical repair of hip fracture vs nonsurgical management in nursing home residents with advanced dementia [published online May 7, 2018]. JAMA Intern Med. doi:10.1001/jamainternmed.2018.0743

2. Mehr DR, Tatum PE, Crist BD. Hip Fractures in Patients With Advanced Dementia What Treatment Provides the Best Palliation? JAMA Intern Med. 2018;178(6):780–781. doi:10.1001/jamainternmed.2018.0822

3. Johnston CB, Holleran A, Ong T, McVeigh U, Ames E. Hip Fracture in the Setting of Limited Life Expectancy: The Importance of Considering Goals of Care and Prognosis. Journal of Palliative Medicine 2018 21:8, 1069-1073

4. Morrison RS, Siu AL. Survival in end-stage dementia following acute illness. JAMA. 2000;284(1):47-52

Monday, September 17, 2018 by Pallimed Editor ·

Friday, September 14, 2018

Mandated Queries of the Florida Prescription Drug Monitoring Program: Early Experiences from a Cancer Center-based Outpatient Palliative Medicine Clinic

by Chad Kollas (@ChadDKollas)

Background and Introduction

On July 1, 2018, Florida implemented a new law requiring all licensed physicians to query the state’s prescription drug monitoring program (PDMP), known as the Electronic Florida Online Reporting of Controlled Substances Evaluation (E-FORSCE), before prescribing controlled medications, including opioid analgesics. This law evolved from a September 2017 proposal by Governor Rick Scott intended to reduce deaths from Florida’s growing number of opioid overdoses, a trend commonly known as the Opioid Crisis.

Gov. Scott’s proposal built upon two recent Florida laws, which were also proposed to combat the Opioid Crisis. The first measure created Florida’s PDMP in 2009, although the program was not funded for operation until September 2011. The second law passed in 2012 and established prescribing rules for managing chronic pain and highly regulated free-standing pain management clinics (Lenchus JD, Opioids and Controlled Substances. FMA Controlled Substance Prescribing Course, 2018). While these laws eventually resulted in the elimination of Florida’s rogue Pain Clinics, known commonly as “Pill Mills,” they unintentionally increased opioid stigma and made it more difficult for cancer patients to obtain controlled pain medications (Kollas CD, Boyer-Kollas B. J Pain Symptom Management, February 2018;55(2):663-4).

In April 2018, the Florida legislature broadened Gov. Scott’s original proposal to include almost all controlled medications (including C-II through C-IV), not just opioid analgesics, because of a political trade-off that expanded exemptions for treating chronic pain to include hospice and palliative medicine physicians. This subtle change in legislative language eluded many in the healthcare environment, until just before the planned implementation of the new law, causing anxiety for many Florida physicians and patients concerned about maintaining access to controlled medications.

In light of this anxiety about the potential impact of the new law on both patients and physicians, we initiated a quality improvement (QI) project to characterize its effects and identify opportunities to improve palliative care in the setting of implementation of the new law.


In our outpatient palliative medicine clinic (PMC), we began recording results of all E-FORSCE queries occurring after the law’s implementation of July 1, 2018. We informed each patient that the PDMP query had become mandatory in Florida, and we discussed the results of each query with each patient. Each query examined the last 12 months of the patients’ controlled medication prescriptions. This article describes our experiences in the first month of experience with the new law, although we plan to examine queries for a total of three months before closing this QI project.

For the purpose of this QI project, we have documented patients’ demographics, including each patient’s age, gender and limited identifying information, such as patient names and identification numbers; this data will be de-identified for any statistical analysis planned in the future. We also recorded patients’ main diagnosis and pain symptoms, the number of prescribers listed by the PDMP as well as the dose of the patient’s opioid analgesia, measured in average daily morphine milligram equivalents, as provided by the state database. We also noted pain ratings with and without medications, including opioids and non-opioids, as well as the difference between those ratings.

We classified the numbers of each patient’s prescribers binarily (one prescriber or more than one prescriber), and usage sage patterns were classified ordinally as medically legitimate, aberrant or medically illegitimate. Medically legitimate patterns reflected 1) cross-coverage of medication renewals, 2) evolving sites of care (such as a transitioning into oncologic care after treatment of cancer pain before establishing a cancer diagnosis), 3) prescribing of non-opioid controlled medications by primary care physicians (PCPS) and/or their cross-coverage and 4) prescribing within the policies and rules of the PMC.

We defined medically illegitimate patterns as involving 1) duplicative prescriptions (multiple prescriptions within close temporal proximity at multiple geographic site or multiple providers), 2) patterns unexplained by under-treatment and/or an inability to fill prescriptions in full quantity, or 3) behavior(s) prohibited by the policies and rules of the PMC. We used the category of aberrancy to describe situations which did not fall cleanly into the definitions of medically-legitimate or illegitimate usage.

Additionally, we classified opioid dosages ordinally, using the three planned categories for daily MME dose that will be used by the Centers for Medicare and Medicaid Services (CMS) by virtue of its opioid prescribing rules for 2019:
  • Less than 90 MME
  • 90-200 MME or
  • Greater than 200 MME
We also allowed for individualized comments regarding any unexpected or unusual findings when performing a PDMP query. The mean MME over the last 30 days was usually obtained from the PDMP, but was calculated based on prescribing instructions when not provided explicitly by that database.

Finally, we recorded patients’ self-reported pain ratings based on a 0-10/10 scale, with 0 indicating no pain and 10 indicating excruciating pain (or the most severe pain the patient had ever experienced). We recorded patients’ pain ratings with and without cancer pain medications, clarifying that we meant pain medications being prescribed medically for their cancer pain. In our clinic, the usual goal for cancer pain control is achieving a pain rating of 4-5 out of 10, not the achievement of a pain-free state, an approach that evolved from the American Pain Society’s recommendations for managing cancer pain.

Preliminary Results


In the first month of our QI project, we queried the Florida PDMP for a total of 125 outpatients. Of these, 96% had cancer-related pain, while the rest had chronic pain related to other conditions for which they received outpatient palliative care, such as sickle cell disease (3 patients, 2.4% of total). The patients’ average age was 57.8 years old (range of 25 to 85) and 61.6% of them identified as female. Nine patients (7%) were new consultations to the PMC.

Prescribers and Usage Patterns

About 73% of the patients had more than one prescriber listed in the PDMP, while 24% had a single prescriber for controlled medications. Only two patients (1.6%) exhibited aberrancy: one had a query showing 15 prescribers, and the other was a healthcare professional who had self-prescribed renewals of anxiolytic medications (which is considered unethical, but not illegal in Florida). The patient with 15 prescribers was ultimately not found to be using opioids illegitimately, but rather was participating in the healthcare system in a fragmented way, through two, parallel sets of third-party payers (health insurance and motor vehicle insurance).

Notably, there were no patients whose prescribing pattern suggested medically-illegitimate behavior, such as “doctor shopping.” More importantly – and somewhat concerning – we uncovered four cases in which the state PDMP was demonstrably incorrect, which would reflect an error rate of 3.2% in the database. This included two cases in which prescriptions written in the PMC were attributed to non-prescribing providers at outside locations. Two other patients had filled prescriptions for controlled pain medications, but did not appear in the PDMP at all. An additional patient was not located initially, but found under her maiden name after further investigation (and not considered a PDMP error).

The mean opioid analgesic dose for all of the patients was 210 MME per day, but the median dose was 100 MME per day, with a very wide range of daily dosages (6 MME to 1300 MME; Std. Dev. = 265.2). The distribution of Daily MME is shown in Table 1 (below). Three patients had received opioid analgesics within the last year, but were no longer taking them at the time of the PDMP query.

Pain Ratings

The patients’ mean pain rating without taking any pain medications was 8.5 out of 10 (SD = 1.1, Median = 8.5). The patient’s mean pain rating when taking their prescribed cancer pain medications was 3.8 out of 10 (SD 1.5, Median = 3.5), with an average reduction in pain rating was 5.0 points (SD = 1.5, Median = 5.0). This represented an average in reduction in pain of 56.4% with usage of the prescribed regimen.

Discussion and Policy Implications

We were surprised that almost three-quarters of outpatients in a palliative medicine clinic (PMC) housed within a regional cancer center had PDMP queries that showed multiple prescribers for their controlled medications. Each patient who receives palliative care in our PMC receives written educational material describing the policies and procedures of the clinic, including a directive encouraging them to receive prescriptions for controlled pain medications from a single prescriber and use a single pharmacy to fill them. On the other hand, deeper examination of each PDMP report revealed that the vast majority of the patients were taking controlled medications in a medically legitimate way, with only two patients exhibiting medication aberrancy and no patients demonstrating medically inappropriate behavior. Florida Governor Rick Scott introduced the concept of mandatory physician queries of the PDMP to “combat opioid abuse in our state”, implying that queries might uncover inappropriate patient behavior, although the law ultimately does not advise physicians how to proceed after performing a mandated query. Additionally, some physicians have suggested that the presence as multiple prescribers in a PDMP should serve as a red flag for doctor shopping, a form of medically inappropriate patient behavior. Based on this QI project and our prior work, we are concerned that applying that using multiple prescribers as a red-flag PDMP strategy could worsen opioid stigma and difficulty filling cancer pain medications in our patient population.

We were also surprised – and disturbed – to find that our estimation of the error rate within the Florida PDMP (3.2%) exceeded the rate at which we identified medication aberrancy and medically inappropriate behaviors (1.6% and 0%, respectively) in our patient population. This calls into question the accuracy and usefulness of the PDMP as a tool to “combat opioid abuse,” at least in outpatients receiving palliative care at a regional cancer center. Of note, we took into account the lag time between when patients fill their prescriptions, at which time the pharmacy submits its record of that transaction to the PDMP, and the time that it takes for the PDMP to post the information to the database for review by prescribers, allowing for a 90-day lag in cases of missing prescriptions.

Opioid dosing varied widely in our project, with 46% of patients using doses of less than 90 MME daily and 28% using doses higher than 200 MME per day. In light of the proposed rules for opioid prescribing for 2019 by the Centers for Medicaid and Medicare Service, we anticipate that about one-quarter of patients receiving prescriptions for controlled cancer pain medications will face procedural hurdles, most likely in the form of health insurance prior authorizations (PAs) , when they attempt to fill those prescriptions beginning on January 1, 2019. It also means that pharmacists will need to contact prescribing physicians for another one-quarter of prescriptions issued to patients with cancer pain, as mandated by the CMSA Proposed Opioid Rules. Given the large number of American patients affected by cancer pain, the regulatory burden upon physicians and pharmacist should prove to be substantial. In turn, this is likely to create more difficulty for cancer patients and their families to access pain medications that many need to preserve their quality of life.

Finally, it is uncertain from our project whether Florida’s mandatory PDMP queries will lead to reduced prescribing of opioids, as has been the case in other states [see Suffoleto et al. J. of Pain, April 2018; 19(4):430-8]. What is clear, however, is that state-mandated PDMP queries have not led to reductions in opioid overdose deaths, a main goal cited by politicians when justifying their passage from legislation into law. Instead of prescription opioids, illicit fentanyl and heroin have become the drivers of opioid overdose deaths. In light of what we have learned in the QI project, this leads us to ask this critical question: Is physicians’ time best spent querying a database with a higher error rate than the rate at which it identifies medically inappropriate behavior and which might lead to worsening opioid stigma and difficulty filling prescriptions for cancer pain medications? Perhaps will be able to answer this question even more forcefully as we complete this project in the months to come.

(This QI project was reviewed and approved by the Orlando Health/UFHealth Cancer Center Joint Oncology Committee for 2018-19. - Ed.)

Dr. Kollas has provided outpatient palliative care at Orlando Health UFHealth Cancer Center for over 17 years. He first wrote about his personal experiences with chronic illness and pain in a 1997 article in the “On Being a Patient” series in Annals of Internal Medicine. You can find him on Twitter at @ChadDKollas.

Friday, September 14, 2018 by Pallimed Editor ·

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