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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

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by Drew Rosielle

The American Society of Clinical Oncology annual meeting, besides being a feast for the pharmaceutical business news pages (google 'ASCO' and most of the hits will be about how announcement X affected drug company Y's stock), is also one of the premiere platforms for publishing original palliative-oncology research. So every year I try to at least scan the abstracts to see what's happening, and I figure I might as well blog about it. It's tough to analyze abstracts, so I'll mostly just be summarizing ones that I think will be of interest to hospice and palliative care folks. I imagine I've missed some good ones, please leave a link in the comments if I have! My major observations on this year's abstracts is that there was very little about symptom management compared to years past, except for neuropathies.

(Past ASCO reviews here - 2008, 2017 - Ed.)

Fatigue/Nutrition

• A negative phase 2 study of a walking intervention for fatigue in patients with breast cancer
• A look at 10-year trends in TPN use in cancer patients (use is slightly declining, as are costs, and involvement of palliative care is increasing)
• Parenteral nutrition once again fails to show any benefit over oral feeding for cancer cachexia (and in fact suggested harm)
• A nice study looking at the determinants of long-term fatigue in patients with treated ovarian cancer
• Perhaps the microbiome influences cancer-related fatigue?

• Code status, race, and palliative care involvement at a single institution in Texas
• A small study that showed that training oncologists in communication skills (it's implied that it's with Vitaltalk methods, although that's not exactly clear from the abstract) does increase the use of those skills in real life, but did not increase the amount of goals of care conversations, etc. 
• A project to disseminate palliative care knowledge in multiple Sub-Saharan African countries
• A fascinating prospective study looking at dis-/concordance between patient and oncologist perception of care goals over time. Another abstract from this study showed that concordance did seem to matter at least for patients with 'aggressive' goals (they got what they wanted if the oncologist understood that goal). I hope they write this up for full-publication, as I want to know more. 

• Apparently palliative celiac plexus radiosurgery is a thing
• More frustratingly inconclusive data about the 'Scrambler' device for chemo neuropathy (it was randomized against TENS, unclear if anyone was blinded, results were barely positive for Scrambler). Perhaps I'm just totally ignorant, but I don't understand why no one can do a double-blinded sham-controlled study of the technology. Actually at this point I'm just assuming because it's not effective and that's why, but I don't really know. [Late edit - hey, I guessed right, a sham-controlled study showed Scrambler probably doesn't help, and you can sense the disbelief and desperation in this curiously-written abstract.]
• Omega-6 fatty acids reduced pain more than O-3 fatty acids in breast cancer survivors in a randomized & blinded (but no placebo-arm) study. Interesting, but I just can't imagine that we are ready to study this without a placebo arm yet!
• An uncontrolled mindfulness study on chronic cancer pain shows promise
• A look at the natural history of chronic pain in survivors of childhood cancers
• Low-quality, retrospective look at cannabis and QOL/symptoms in patients with cancer
• Investigations into cryotherapy to prevent chemo neuropathy stumble along
• RCT of a novel superoxide dismutase mimetic to prevent radiation mucositis in Head and Neck cancer patients with promising results

• Claims and SEER database study suggesting that earlier palliative care involvement in pancreatic cancer reduces some costs. 
• Patients in Medicare managed care organizations use hospice a little more than fee for service Medicare patients 
• Barriers to palliative care involvement in patients receiving stem cell transplants, including this data point, which is something I've personally wondered about a lot: "Higher sense of ownership over patients’ PC issues (β = -0.36, P < 0.001) was associated with a more negative attitude towards PC [by hematologists]."  
• EOL spending was higher in ACO patients vs non-ACO patients.  
• A retrospective study which compares many outcomes in patients who receive early palliative care inpatient vs not. The title abstract highlights survival (which was a bit longer in the palliative group). Please do not quote this abstract however to claim that PC prolongs survival in patients with cancer: this is messy retrospective data, and it's not even clear from the abstract whether the survival difference was in univariate or multivariate analysis (PC patients, eg, were younger, more likely to be discharged home, etc.). Similarly, a Canadian study looked at early palliative care consultation in pancreatic cancer (retrospectively) and apparently showed that late but not early palliative consultation was associated with longer survival. The same study also showed that having metastatic disease at the time of diagnosis was also associated with longer survival, so I'm not going to make much of any of this.

Drew Rosielle, MD is a palliative care physician at the University of Minnesota Health in Minnesota. He founded Pallimed in 2005. You can occasionally find him on Twitter at @drosielle. For more Pallimed posts by Drew click here.

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by Christian Sinclair (@ctsinclair)

It is a testament to the growth and mainstream acceptance of palliative care, that there is a sub-sub-specialty two-day conference like the #PallOnc conference held in San Diego this past weekend. If you have not heard of this meeting yet, and the majority of your work in that intersection between oncology and palliative care, I would highly recommend considering it in the future. This is the 4th consecutive year the meeting has been held, and I applaud the commitment of the four co-sponsoring organizations (AAHPM, ASCO, ASTRO and MASCC). Kristina Newport and Shanthi Sivendran reviewed this conference for Pallimed in 2014 and it was one of our most popular posts. They went on to create the very popular Oncologist in Your Pocket pre-conference at the 2017 Annual Assembly of Hospice and Palliative Care. Clearly there is a hunger for this information!

With two-days of talks and over 150 posters, there is a lot to cover, but let me share some of my key takeaways and highlights of the symposium. For more detailed coverage you can check out the transcript at Symplur or the pallonc.org website (paywall).

The opening session focused on innovative models to integrate palliative care within oncology. Dr. Janet Bull (Four Seasons) made strong points about standardizing care, which starts by developing processes and procedures, collecting data and then using both to cycle through quality improvement. It can be difficult to take the loose, narrative approach commonly seen in palliative care and start to implement structure around the clinical visit. We want it to be patient-centered, and therefore often clinicians will allow the visit to be driven by the patient. Listening to Dr. Bull helped solidify the argument for allowing patient-centered approaches but using design-thinking to make sure that we are truly meeting all the needs of the patient, the system and ultimately ourselves (though efficiency and work-life balance)

The research presented Friday helped define what is involved with early integrated palliative care that makes it successful. Hoerger and colleagues presented analysis of palliative outpatient visits where the clinicians marked what they did immediately after the visit was done. Coping and symptom management were consistent through nearly all visits. Rapport and illness understanding were important early, where as treatment decisions and advance care planning were more important in later visits after trust had been established. While this may seem intuitive it is helpful to have more solid research behind what exactly palliative care that makes it effective.

Putting it all together: focus of integrated palliative care across visits #pallonc pic.twitter.com/YszCI6F9bd

— Shireen Heidari (@LifeAcoustic) October 27, 2017

Dr. Haider and his peers presented a detailed examination of how computers impact patient perceptions of empathy, communication and compassion. If you can take a wild guess, patients preferred the doctor in the vignette where they didn't use the computer. This seems intuitive, but again the research helps set the foundation for how we integrate point of care documentation (efficient, now bedtime charting), immediate access to scans and labs (to facilitate discussions with patients), while still being focused on the patient. Some people use scribes, other people do joint documentation with team members.

Patient perceptions of provider compassion, professionalism lower w/ use of computer vs talking face to face via @alihaider99 #pallonc pic.twitter.com/kdTMQQlHPI

— Shireen Heidari (@LifeAcoustic) October 27, 2017

And it brought up a very palliative moment in the Q and A!

Love #pallonc conference question from audience was preceded by "Dr. Haider...am I pronouncing your name correctly?" #ThatsSoPalliative

— Christian Sinclair (@ctsinclair) October 27, 2017

In the afternoon Sandra Mitchell (NCI) had a great session on fatigue during and following cancer treatment. While it is difficult to read some of the headers, I htink this is a smart approach to presenting data on symptom management, with green = good data, and red = less data. As you might see low-dose dexamethasone is on the red side. So maybe those of us seeing some good results from that, need to publish better data (or readdress on own biases).

Dr. S Mitchell: Fatigue interventions: green = good data, red = less data #pallonc pic.twitter.com/8fM92n7Bs8

— Kristina B. Newport (@kbnewport) October 27, 2017

One consistent theme was the importance of non-phamacologic management. What unfortunately was not routinely addressed was how to access CBT, acupuncture/acupressure, massage, psychology and others. I feel relatively lucky but occasionally frustrated at how to get my patients access to these services on a consistent basis to meet their needs. It is one thing to hear about how great they are at a conference, but another thing to get them implemented in your practice. If anyone has stories of success please share them with us!

More coverage on day 2 tomorrow!

Christian Sinclair, MD, FAAHPM is editor of Pallimed, and a palliative care doctor at the University of Kansas. He loves that next year's #pallonc conference will be in San Diego again, since that is his hometown!

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By Amy Velasquez

There are not enough words to express my gratitude for having been invited to present a poster at the CAPC (Center to Advance Palliative Care) 2016 conference on Orlando. There were so many inspiring moments at the conference I am not sure where to start. Diane Meier sums it up with two words that impacted me the most, bankruptcy and “the norm.” She said one leading cause of bankruptcy is a chronic illness. All the years of hard work, saving money, and planning for the future can be lost to bankruptcy caused by a relentless chronic illness taking a family to lead a much different path than they had planned. Watching an elderly couple that has been married for 59 years, lose their house is a tragedy.

The term “norm” is individually defined. What is normal for one family may not be normal for another. What Diane is talking about is creating a world where palliative care is the norm for everyone involved. At the conference, we did not need to explain ourselves, everyone there “gets it.”  We were all one big family at the conference, trying to figure out how to spread the gospel of palliative care into a world with multiple different norms. Educating our future clinicians is the key to removing the stigma that palliative care is only for the dying. Listening is not an innate characteristic - we must be taught.  When we learn this, empathy follows. It is bedside nurses and the social workers of the world that have this mastered. To empathize with the patient and family promotes better patient outcomes and this causes palliative care to become the norm.

What else did we learn? We learned that we need to start a revolution, a war on symptoms a war on chronic illness, a war that will take care of the patient and not deplete their checkbook and the world’s checkbook as well. But how do we do this? I believe all of us are put on this world for a reason. To be able to listen to Patrick Conway, the longest acting Principal Deputy Administrator and the CMS Chief Medical Officer, was undoubtedly one reason I was brought to this conference. If you think the people at the very top of our political health care system do not have heart and soul, I am here to tell you otherwise. Patrick displayed the utmost desire to make our healthcare system attainable, realistic, strong and thoughtful. He talked about his years as a practicing pediatric physician and a specific story that changed his life and the life of a mother left behind without her child. This story not only displayed integrity on his part but it gave me hope in our healthcare system. I now have hope that the men and women at the top making decisions really do care, they really want our health care system to succeed.

Amy Velasquez RN BSN Palliative Care Nurse Navigator for the University of Kansas Hospital Annette and Richard Bloch Cancer Center. Amy loves nursing and her hidden talents are triathlons and painting landscapes.

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by Jessica Heintz

For me, attending the Center to Advance Pallaitive Care (CAPC) Seminar is very much like coming home. To be with other palliative care providers who understand the language, and the struggles as we all push forward the agenda of improving care for the seriously ill, is the ultimate homecoming. Though we all know “If you’ve seen one palliative care program, you’ve seen ONE palliative care program,” at the same time, so much of what we face is similar. I am so grateful to CAPC for creating the space, providing the tools, and driving the agenda to help us all lead the transformation of modern healthcare. I truly love being a part of it.

There were more than 1,000 participants this year including physicians, nurses, chaplains, pharmacists, payers, social workers, counselors, administrators, the C-Suite (Yes, a health system CFO came to CAPC!) all trying to ride the wave as we shift from fee for service into the nebulous and evolving population health model. I love networking and learning with this crowd, exploring how palliative care demonstrates its value and maintains excellence in an expanding variety of settings and constructs.

The preconference “Bootcamp” on palliative care strategies for the community was definitely a bootcamp. A little like drinking from a firehose, it was worth every minute. The overriding theme of the conference was the importance of relationships, across the continuum and at every level. As we consider, design, develop, build, and deliver expanded palliative care services, integrating and partnering with the communities that have a growing desire (and growing mandate) to get it right and well, will be essential.

Including the individual patient and family voice has to be a part if this as well. I was especially struck by a comment from one of the speakers, formerly a caregiver for her husband over a prolonged, debilitating illness. She was asked by a member of the audience what she saw as the greatest need in helping caregivers of those with serious illness. Her answer surprised me, and it was simple - "Education."


Her health care providers knew how to deliver the care, but they did not know how to teach it. She pointed out that doing and teaching are in fact, very different skills. I’d hadn’t really even thought of that before, but we are in fact asking nursing, care aids, respiratory therapists, and many others to teach our patient’s families what to do and how to do and we have to start training our health care providers in teaching skills as well.

I learned so much from people speaking about their initial forays into telehealth, a fantastic presentation on resilience, as well as a very creative public engagement campaign that involved actors standing on street corners for a week with signs that read “Things you shouldn't wait to say” that grabbed the local media’s attention and pointed people to a website to help facilitate advance care discussions.

So many amazing ideas and connections, now back at my desk, if I could only get to that To Do list… ☺

I spoke to people from programs with incredibly different infrastructure who have had to get creative and partner and capture data in ways I’d never thought of. But I can take these back to my organization and improve the care we deliver.

One Plenary led by Diane Meier, Director of CAPC, and and Lynn Hill Spragens on Payer-Provider partnerships provided a refreshing opportunity to see behind the curtain of the world of payers. So interesting to see that they face similar issues that we, at the hospital level, encounter as we come before the C-Suite attempting to define our value.

Overall, this is a great conference, and one I look forward to attending whenever I can get there.

Photo Credit: Amy Berman (@NotesonNursing) via Twitter, used with permission 
Photo Credit: www.thingsyoushouldn'twaittosay.org

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by Christian Sinclair, MD

We have come a long way from 2009 when we first had a score of people live tweeting the Annual Assembly.  Whether you are here in Philadelphia or back home keeping the service running while your peers are here, it is easier than ever to get interact with all the great people who care about our field.

If you are looking for just the highlights, look no further than Twitter.  You do not even need to have a Twitter account to make good use of the hashtag #hpm15 (but it sure helps!).  Just go to twitter.com and enter #hpm15 in the search box and you will find the top tweets, pictures and info about the meeting. If you ever feel you just don't get Twitter, go read Staci Mandrola's post from Monday about how she finally gets it, after 5 years of reluctance. This week is a great opportunity to see what the potential of Twitter as an organizing tool for disseminating goo information.  And after the conference you can join us for #hpm chat on Wednesday nights!

This year we are trying an experiment which may appeal to those of you who are more Facebook friendly than Twitter terrific.  If you go to the Pallimed Facebook page (which is a really fun place to be BTW), and click on Events you will find the AAHPM/HPNA Annual Assembly listed.  Here you can post about a session you went to and in the comments below that post, you can start conversations with people who went to that session, or who are interested in the topic.  If it becomes popular, we will take what we learn and share it with AAHPM and HPNA and think about doing this in the future officially.

Now some of you may be thinking this social media stuff is for the birds, yet you may be feverishly writing notes to bring back to your colleagues back home.  If you do a write-up of the big lessons you learned, consider sharing it more broadly. We would love to see what you wrote and we may publish the best ones we see here on Pallimed!

And lastly, if you are in Philly, please consider coming to the Annual Pallimed/Geripal party Thursday night and meet some of the writers of the websites.  It has always been a great night. If you see any of us during the Assembly, please come up and say hello and get your Pallimed sticker for your badge.

Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas, editor of Pallimed and a fan of Philly cheese steaks and hoagies.

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Energy and enthusiasm permeated all aspects of the 2014 CAPC National Seminar. There was a noticeable sense of pride in the advances of palliative care over the past year accompanied with an excitement for new opportunities to expand the field. Because of both the breadth and depth of the seminar curriculum I will only provide comments about the plenary sessions and conclude with a few thoughts on the conference as a whole.

Plenary Sessions

Diane Meier opened the seminar by expressing gratitude for the work of palliative care professionals across the country. Using the Diffusion of Innovation Theory, Dr. Meier proceeded to make a cogent case that palliative care is past the tipping point and sits on the precipice of being institutionalized such that palliative care will be seen as an indispensable and expected component of health care delivery in all settings moving forward. She supported her case by referencing a variety of accomplishments including but not limited to:

1. palliative care as an established field with a high prevalence of palliative care teams in hospitals; 
2. the increasing number of formal certification and accreditation processes in palliative care; 
3. the growing public and professional awareness about palliative care. See Being Mortal as one example; 
4. the increased number of palliative care training options through entities like ELNEC, Vital Talk, and CAPC; 
5. additional evidence on the benefit of palliative care for patients and families; 
6. supportive policy and enhanced advocacy. 

Specifically, through the ACA incentives for quality and high value care have never been more important and because palliative care has been shown repeatedly to be both high value care and quality care, payers are noticing. See Improving the Care of Serious Illness Through Innovative Payer-Provider Partnerships.

David Weissman used his plenary to encourage palliative care professionals to be educators. While many palliative care teams may balk at opportunities to educate due to a lack of time, Dr. Weissman encouraged teams to find creative and meaningful ways to educate. He provided examples on ways to integrate education informally into clinical practice. Moreover, Dr. Weissman spoke to maximizing the learning experience through thoughtful and intentional approaches to defining the title of your presentation, writing objectives and selecting your educational format. Additionally, Dr. Weissman referenced tools to aid you as an educator such as the End of Life/Palliative Education Resource Center and Fast Facts. Later in the seminar, CAPC recognized Dr. Weissman with the CAPC 2014 Innovation Award for his substantial and meaningful contributions to the field of palliative care.

Sister Carol Keehan, President and CEO of the Catholic Health Association of the United States offered effusive praise for the work of palliative care professionals during her session. She described the integration of palliative care services in CHA member health systems while repeatedly noting the importance of high quality care for the seriously ill.

Graeme Rocker from Dalhousie University discussed the program INSPIRED Approaches to COPD: Improving Care and Creating Value. Dr. Rocker described this outreach program for patients and families living with advanced COPD and demonstrated how the program resulted in improved clinical outcomes for patients as well as a reduction in ED visits, hospitalizations and hospital days. During his presentation a family member who benefit from the program described her experience and the importance of palliative care professionals.

Former Senator Bill Frist offered the final plenary session. Dr. Frist described the role of the private sector in scaling palliative care. Dr. Frist highlighted the private sector’s ability to move quickly, provide capital to programs and experiment with new models of care delivery. Furthermore, he articulated the value palliative care brings to the private sector as incentives for quality increase. He concluded his presentation by demonstrating how Aspire Health is working with the private sector to respond to the needs of the seriously ill.

Conclusion

On the whole, the 2014 CAPC Seminar offered the over 900 attendees the tools to address issues that are integral to the development and sustainability of high quality palliative care programs. Intensive and concurrent sessions offered a wide range of expertise including but not limited to program development, clinical models, quality metrics, leadership, developing business plans, palliative care across systems, inpatient, outpatient, clinic based and home palliative care, palliative care in the ICU, emergency department and long-term care facilities, reaching out to payers, and specific populations.

CAPC will be a membership organization beginning in 2015 and attendees got the first look at some of the benefits of membership which includes online curriculum, virtual office hours, and web conferences.

The conference offered adequate time and setting for networking opportunities and included “office hours” so attendees could work directly with faculty experts. The #CAPCSeminar14 received much attention from a thoughtful and active community on Twitter. It’s well worth searching the hashtag to see quotes, photos, articles, and references.

Undoubtedly, participants will use the content from the conference to launch new or enhance existing palliative care programs across the country.

Turner West, MPH, MTS is an educator and administrator at Hospice of the Bluegrass in Lexington, KY. He is married has a 16 month old with a “ask me about palliative care” bib and an 8 year-old St. Bernard.

Image Credit: Palm Trees Gerald Harriman (@hpmsudo) via Twitter
Image Credit: Conference Hall Ian Kwok (@kwokytalky) via Twitter

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I have heard quite a bit of good feedback and press about the ASCO/AAHPM palliative oncology meeting in Boston at the end of October (See Pallimed Review One and Two). And I agree; Bravo! Having attending the meeting as a hospice medical director and somewhat retired palliative medical oncologist, my reflections of the meeting are more complicated. Indeed, there was excitement and energy about the possibilities, in clinical and research arenas alike. Especially among physicians, young academic physicians in particular.

For those of us who have migrated around this landscape a bit and have seen slow and fast changes over the last decade, the excitement and energy were palpably tempered by some harsh realities. Those realities really distilled themselves around Dr. Arif Kamal’s (Duke University Palliative Care Division) excellent oral presentation on Saturday October 25: “Prevelence and predictors of burnout among specialty palliative care clinicians in the United States: Results of a national survey”. The results were interesting and straightforward, and not surprising to me: Physician burnout in palliative care is higher-over 62%-than the burnout rate reported in medical oncology-45%-according to a large national survey of over 1,200 hospice and palliative care clinicians*. And over 50% of palliative care physicians expect to leave the field in the next 10 years.

Some may be interested in the subgroup analyses and predictors, but I believe the important message in in the forest, not in the trees. I talked to Dr. Kamal (a native Missourian like me!) and a number of other physician and nurse professionals at the meeting about the stresses and strains of palliative care practice with teams in the oncology and non-oncology settings and in inpatient and outpatient settings. The messages I received were fairly clear-cut and stark. The field is moving forward. There is progress but much work yet needs to be done to serve the needs of the patients and families and the health care system. There aren’t nearly enough clinicians doing this work and being paid to do this work. Hospitals and health care systems are reaping the benefits of the teams (quality improvement, patient satisfaction, and dramatic cost savings/avoidance), but not supporting the teams nearly enough with needed staffing or infrastructure. It isn’t only that programs can’t find the people to fill the positions needed; it is that the hospitals and systems are not creating/funding the needed positions. According to Dr. Kamal, other sources of burnout noted by those palliative care clinicians surveyed include constant justification of our worth to other clinicians and administration (not as much of an issue for oncology teams), lack of mentorship and colleagues, and the emotional toll of the work.

So...the work gets done by hard-working, mission-driven, passionate, committed physicians and nurses and advance practice nurses and social workers and chaplains, but they work very long days (and nights) often more than 5 days a week without the administrative support they need to work smarter and more efficiently and to get them more help. And often they get penalized for working overtime! Interestingly, these same forces are in effect in the medical oncology world, for both hospital-owned and the less common private practices. Profits may be going down somewhat as value goes up, but the system is squeezing the value/profit out of PC programs and Oncology practices,and not paying the price of staffing those hospital programs and clinics with the physicians, nurses, and other clinicians and staff to assure the highest quality of care and job satisfaction for these committed professionals.

Consequently, as we move palliative care more into the ambulatory setting, and more into the oncology setting in a truly integrated way, and discuss primary palliative care vs. secondary palliative care, we MUST engage with the directors and CMOs and CFOs and COOs of these programs.  Engage by sharing the burnout data and stories with organizational leadership and also share the quality and fiscal benefits they are receiving now, could receive more of in the future, or could lose to burnout if we don’t take care of ourselves and our teams while we do this critically important work for our population and our health care system. As I noted in my tweet after Dr. Kamal’s presentation:

#pallonc: too much work, not enough support, need to say NO more often, set personal and team limits, share the pain!
— Clay Anderson (@AnglerMD) October 25, 2014

What we do is way too important to have us fall on the sword and then leave no one else to do it. As Dr. Kamal notes in personal communication: “In the business world, we’d be called disruptive innovators. But in medicine, we’re often just referred to as disrupters, interrupters, misfits, etc.”. Let’s move forward with passion, but with limits and firm negotiation befitting of our value to our patient and families, and our health care system.

Clay M. Anderson, MD, FACP, FAAHPM is the Medical Director for NorthCare Hospice and Palliative Care in Kansas City, MO.  He is also a fantastic angler who can be found on Twitter at @AnglerMD.

(*You may have seen this survey on Pallimed and taken it yourself! This data is about you! - Ed.)

Photo Credit: Unknown

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The surprsingly inclusive sign from OhioHealth

by Kristina B. Newport MD and Shanthi Sivendran MD, MSCR

(This is the second of two reviews of the apparently fantastic inaugural 2014 Palliative Oncology conference. Please see Sydney Dy's review for additional perspectives. If you use these conference reviews with your teams/orgs, please let us know in the comments below. - Ed.)

Palliative + Oncology = Love

But it hasn’t always been that way. Palliative and hospice specialists have been caring for cancer patients for decades. Oncology specialists have been implementing palliative principles before we used that term. However the Palliative Care in Oncology Symposium deliberately and publicly cemented this relationship in a way that has not been done before. Sponsored jointly by ASCO, ASTRO, MASCC and AAHPM, the symposium aimed to merge the key elements that each field uses in their approach to improved patient care.

We (an Oncologist and a Palliative medicine physician- AKA Palliatrician) attended this symposium with the goal of improving our own collaboration. As colleagues, running partners and research partners, we often laugh about our different approaches to patient care, and sometimes life, that are rooted in our respective specialties. When comparing our annual meetings, with the ASCO meeting presenting multitudes of p-values and the AAHPM meeting highlighted each year by a tear-jerking memorial service, it must have been a daunting task for the steering committee (made up of Michael Fisch, MD, MPH (Chair), Dorothy Keefe, MD, Traci Balboni, MD and J. Cameron Muir, MD) to marry the two approaches.

When 700+ practitioners, including physicians, nurses, social workers, psychologists, dieticians, nurse practitioners, administrators and patient advocates packed into the designated conference hall (it was full to capacity because the organizers adjusted to accommodate a higher than expected attendance) we were greeted to an opening introduction that was akin to a long awaited wedding ceremony. Michael Fisch reflected on the history of both Palliative and Oncologic medicine that paved the way to the point we have reached, emphasizing the barriers that have been overcome by many of the people who were in attendance. And, like a marriage of two families, the remainder of the meeting celebrated the union but also pointed out the differences and room for growth. Jamie Von Roenn MD, who was recognized as the driving force behind the symposium, described the ASCO perspective why palliative care is a necessary component of oncology care, stating “Palliative care always, anticancer therapy sometimes”. She firmly believes that every oncologist needs to know how to do primary palliative care and advises that oncologists need to be clear about reasons for treatment- with patients and with themselves. She clarifies that palliative chemotherapy is only palliative if it is helping a symptom.

Evidence based symptom management was emphasized, with the words of Dorothy Keefe MD, MBBS, “we cannot practice good cancer care without good symptom science”. Illustrating the science were:

• Stephen Sonis DMD, DMSc on Predicting risk in treating cancer pain- Determining genetic pre-diposition to side effects and symptoms that will soon help us to tailor symptom management.
• Jeannine Brant PhD, APRN, AOCN on Electronic integration of patient reported outcomes- The need to better elicit patient reported outcomes through electronic patient input, emphasizing that when oncologists elicit symptoms in person, they miss a lot, particularly psychosocial distress.
• Patrick Mantyh PhD, JD on Mechanisms of cancer pain- Presenting the evidence that Early cancer pain management is imperative to preventing sensory nerve sprouting, and worsening pain down the road.

Abstract session highlights include:

Arif Kamal’s starting visual comparing burnout rates by speciality

• A survey of burnout in palliative care providers by Arif Kamal, MD showing that more than 60% palliative care providers report high burnout, a number that is significantly higher than other specialties, despite our intentional emphasis on humanizing medicine and employing self-care techniques. Burnout was correlated with isolation from colleagues and long hours.
• A Palliative/Oncology Co-rounding system described by Richard Riedel, MD resulted in decreased length of stay and re-admission to the Duke inpatient cancer unit. His team emphasized the personal tailoring of this model, since the team decided whether patients needed the Palliatrician, the Oncologist or both, on a daily basis.
• A study of advanced care planning by Joanna Paladino MD showing that Oncologists are responsive when prompted to have advanced care planning discussions with their advanced cancer patients
• A survey on resident code status discussions by medical student David Johnson Einstein showing resident physicians are unlikely to share the poor prognosis or offer specific recommendations on CPR in treatment-refractory cancer because of a perceived conflict with patient autonomy.
• A description of an automated symptom reporting system for hospice patients was described by Kathi Mooney PhD, RN, FAAN, showing evidence that daily automated reporting of symptoms by caregivers resulted in improved symptom management and caregiver vitality.
• An evaluation of a modified CAPC trigger tool for palliative care consults did not capture all patients who could have benefitted from consult, presented by Michelle Farnan RN MSN
• A cost analysis by Joseph Greer of Temel’s early palliative care in lung cancer trial showed a $117/day inpatient savings and no increased use of healthcare dollars overall despite additional supports provided to patients

With the emphasis on increased research in palliative/oncology care, the session on funding and research for palliative in oncology was well attended despite the allure of lunch. Highlights included the emphasis from both Lynne Padgett, PhD (NCI Health/Behavior research program) and Ann O’Mara PhD, RN to contact them directly when developing proposals. NCI received more than 8,000 proposals last year and funded 14% of them, so the application, the study and the applicants must all be stellar.

Anthony Back, MD whose mission is to improve communication skills, gave an entrancing presentation, as expected, emphasizing that good communication takes practice and a framework. He used the metaphor of a jazz musician who has trained so well that even their improvisations are beautiful- the good communicator can handle the difficult situations only because of practice. BJ Miller MD offered a complimentary session emphasizing incorporation of the arts and philosophy to “make life more wonderful” not just for our patients, but for ourselves as well.

Attention to the need for earlier palliative care involvement was one of the major themes because, as Ira Byock MD simply stated, “It’s always too early, until it’s too late”. Impactful talks given on this topic included:

• Jennifer Temel, MD’s plenary session highlighting data from the three studies: The first was her own study (referred to as “The Big Bang” of Palliative Oncology) showing that automatic, regular palliative care in advanced lung cancer patients resulted in decreased depression, increased QOL, less aggressive care at end of life and improved survival. The intervention was loosely defined but occurred monthly. This data had come out in the midst of the series of 3 ENABLE trials, by Marie Bakitas DNSc that have shown improvements in depression and survival via a phone intervention with caregivers. ENABLE III showed that early vs late (12 weeks later) enrollment had a significant effect. Their latest analysis reveals the important finding that receiving the intervention significantly reduced mortality among clinically depressed patients. Zimmermann’s 2014 cluster-RCT of early palliative care in advanced cancer was also highlighted for it’s promising findings of a tendency toward increased quality of life.  Temel went onto analyze the key elements of these studies, emphasizing how they can be improved upon for future research including attention to Reproducibility, Cost effectiveness and Generalizability
• Charles Von Gunten MD PhD presented the perspective he has gained while working to incorporate palliative care into oncology care in Ohio and made us all laugh with a satirical video like this one. He noted that local institutions often need to see their own data before accepting and acting on national data.
• Traci Balboni MD MPH discussed palliative care in radiation oncology, where she finds that symptom burden is high, with more than 40% of patients receiving non-curative treatments. She highlighted that although 1 (to up to 10) fractions of radiation are adequate to treat bony pain from metastases as per Choosing Wisely, nationwide over 50% of patients receive greater than 10 fractions potentially leading to greater side effects, precious time away from family at end of life, and decreased quality of life. She also comments, repeatedly, that palliative education is limited in Radiation Oncology training programs, something that she wants to see change.
• Deborah Jane Dudgeon MD- Reflected on The Cancer Care Ontario Integration Experience, recommending standard use of the Queens’ ESAS and sharing that over 61% of regional cancer patients in Ontario are now being screened. Also recommends that the term “active” care be abolished due to its unintended message.

A visual interpretation of the need to personalize the palliative care package  for patients as their needs dictate, much like targeted therapies for lung cancer.

Ira Byock, MD gave the AAHPM perspective that the science is not enough. First, he addressed timing; “We are doing brink-of-death care, not end-of-life care, let alone concurrent care,” he said. “It is time to call out bad care when physicians are not being honest with their patients about their prognosis and letting them benefit from palliation”. Then he addressed the ‘person’ component; “High quality palliative care should be consistent with standards and guidelines, BUT science only becomes "care" when it's applied to help patients. It's not just symptoms and suffering; it's more personal. It's life completion, grief, relationships, greater meaning.” Of course, we know that these areas are difficult to study. Evidence that was presented along these lines included:

• Tracy Balboni MD MPH was tasked with speaking for our spiritual care colleagues, during which time she shared evidence that attention to spirituality is desired by patients and results in increased quality of life, increased hospice use and decreased costs.
• Harvey Chochinov MD PhD delivered an elegant discussion of his work on dignity therapy, where he has found that patients’ perception of their appearance significantly affects their dignity and dignity correlates positively with good symptom control and patient satisfaction.
• James Zabora ScD Reflected on the difficulty of measuring psychosocial distress, showing that the NCCN Distress tool is an adequate screening tool but misses 50% of distress that BSI-18 identifies.

While most presenters implied or stated that palliative care has potential benefit for patients across the continuum of care, Dorothy Keefe MD provided the controversial view from MASCC that palliative care has a specific role only in advanced cancer patients, preferring the unique terms/models of ‘supportive care’ and ‘survivorship care’ for the remainder of patients.

Patricia Ganz, MD presented strong evidence to the contrary, stating that “survivorship and palliative care are joined at the hip” due to their similar goals and approaches. Discussing difficult symptom management issues in cancer survivors were:

• Julienne Bower PhD discussed the debilitating fatigue survivors can experience how it is under-reported, under-treated and may persist for months or years after treatment. She has some evidence that inflammatory cytokines are involved. See also ASCO Guidance Recommendations for Fatigue.
• Tim Ahles PhD commented on the predictors cognitive impairment after chemotherapy, including children under 5, high dose chemotherapy, and treatment for brain treatment. Interestingly, 20-25% of breast cancer survivors had cognitive impairment even before adjuvant treatment and 15-30% have it afterward.
• N Lynn Henry MD PhD commented on the difficult problem of aromatase inhibitor-associated Musculoskeletal symptoms (AIMSS), suggesting AI switching, duloxetine, vitamin D, acupuncture and exercise as possible interventions although none are standard of care.

At Symposium closing, we leave with the feeling that we, like a newly married couple, have solidified a relationship that will continue for many years. But also one that will have bumps in the road and will need continued work (that may include a few arguments along the way). Our mission is to maximize this, our honeymoon period, by bringing more science to the palliative world so that evidence supports our recommendations for increased teamwork, improved communication and symptom management. As Anthony Galanos MD commented, “It’s not just about Oncologists learning from the Palliatricians, it’s also about us learning from them.”

Abstracts available at: www.pallonc.org


Kristina B. Newport MD,  Palliative Medicine Consultants, Hospice and Community Care, Lancaster PA Follow @kbnewport

Shanthi Sivendran MD, MSCR – Hematology/Oncology Medical Specialists, Ann B Barshinger Cancer Institute, Lancaster General Health, PA

Photo Credit: Oncology and Palliative Medicine - Courtesy of Charles Von Gunten
Photo Credit: Burnout in Palliative Care slide - Courtesy of Arif Kamal
Photo Credit: Personalized Palliative Care slide - Courtesy of Jenifer Temel

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Sydney Morss Dy, MD, MSc is Physician Leader, Harry J. Duffey Pain and Palliative Care Program, Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, where she has had the great good fortune to work closely for many years with clinical pharmacists, pain specialists, social workers, and a psychiatric liaison nurse, who have taught her much about pain management and the use of opioids.

Photo Credit: @Ctsinclair via Twitter
Photo Credit: Werner Kunz via Compfight cc