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Showing posts with label non-pain symptoms. Show all posts
Showing posts with label non-pain symptoms. Show all posts

Monday, September 25, 2017

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

by Christian Sinclair

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

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

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

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

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

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

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

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

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

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

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

Monday, September 25, 2017 by Christian Sinclair ·

Tuesday, February 7, 2017

ASCO Supports Concurrent Palliative Care for People with Advanced Cancer

by Christian Sinclair

The American Society of Clinical Oncology recently published the strongest call for concurrent palliative care in oncology. Released online on Halloween 2016, and published in the Journal of Clinical Oncology just last month, this Clinical Practice Guideline (CPG) should be in the pocket of every palliative care team as they meet with their oncology colleagues to collaborate on better care for patients.

The guideline holds more weight and expands the scope compared to the 2012 Provisional Clinical Opinion which emerged after the Temel article. In 2010, NEJM published a randomized control trial (RCT) of palliative care in metastatic non-small cell lung cancer (NSCLC). Many people (outside of palliative care and within the field) focused on the secondary outcome that palliative care might prolong life. That mania often overshadowed the primary outcome which demonstrated that palliative care provided concurrently could improve the quality of life (QOL) of patients, dispelling the common barrier because oncologists ‘already do this.’ (See Lyle Fettig’s excellent analysis here.)

So what changed between 2012 and 2016?
The 2012 PCO focused more on symptom burden and QOL, Instead of focusing on the survival benefit secondary outcome of Temel, they emphasized lack of harm. They did pull from other key studies including Bakitas (ENABLE), Brumley (in-home PC), Meyers (patient/caregiver dyads), and Rabow (outpatient clinics). The 2016 Expert Panel looked at 16 total studies to come up with the 6 areas of focused recommendations for the CPG, which are:

  • Effective symptom control
  • Practical models of palliative care
  • Defining palliative care in oncology
  • Relation of palliative care to existing/emerging services
  • Interventions for caregivers
  • Which patients benefit and at what time in illness

(A quick sidebar on definitions. Advanced cancer includes those with distant metastases, late-stage disease, or cancer that is life-limiting and/or with a prognosis of 6-24 months. There was a specific lack of focus on end of life as a criterion. ASCO defined palliative care in this guideline as: patient and family-centered care that optimizes quality of life by anticipating, preventing and treating suffering. Palliative care throughout the continuum of illness involves addressing physical intellectual emotional, social and spiritual needs, in addition to facilitating patient autonomy, access to information and choice.)

Will this new guideline change practice?
History may give you a reason to be cynical. Palliative care has been trying to get upstream with oncology for a LONG time. Surprisingly, the 2012 Provision Clinical Opinion and Temel study had no impact on the 2013 NCCN Guidelines for lung cancer (0 mentions of palliative care in 100 pages). But with studies like Al-Jawhari's Palliative Care in Stem Cell Transplantation and the growth of the Palliative Oncology conference, things may be changing. In addition, value-based payment models like the Oncology Care Model emphasize QOL.
Check out more Pallimed posts about oncology.
This week, I was able to present these guidelines at the Cancer Center Business Summit in a session dedicated to palliative care. The audience was primarily administrators and executives of community cancer centers wanting to talk about how to make palliative care more integrated into their care delivery, so I am hopeful there is a plowed field ready to plant some seeds of concurrent palliative care.

So go download this open access PDF, read it, make sure you are doing the best evidence palliative care you can do, discuss it with your palliative care colleagues and only THEN when you have your ducks in a row, go talk with your oncology peers and see what beautiful things you can create together.

Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas, editor of Pallimed, and really loves doing outpatient care in the oncology clinic.

Tuesday, February 7, 2017 by Christian Sinclair ·

Monday, April 20, 2015

Medical marijuana in hospice and palliative care

Just in time for the unofficial holiday celebrating marijuana (4/20), there is a lot more cannabis chatter. President Obama is expressing more support for decriminalization of medical marijuana. The new Surgeon General, Dr. Vivek Murthy, notes that in some medical situations 'marijuana can be helpful.' It made me curious to see what are hospice and palliative care advocates saying about the topic.

Palliative care clinicians are often concerned about access to symptom controlling medications and therapies when it comes to relieving suffering. For example with opioids, you can hear clinicians advocate for access to these important medications, but also recognize the public health risk which comes from diversion and inappropriate/non-prescribed use. Similarly with integrative medicine, you may also hear people in hospice and palliative care advocating for access and use of massage, acupuncture, hypnosis, biofeedback, aromatherapy among others, even though the research may not be strong for any one particular complementary/alternative therapy.

Data accurate as of April 1, 2015
Yet when it comes to marijuana for symptom control, hospice and palliative care as a field is relatively quiet in comparison to these other areas mentioned above, in addition to being much quieter than the 'medical marijuana' and 'recreational marijuana' movements happening across the United States. In Kansas and Missouri, where I currently practice there are no current laws which allow for medical marijuana or recreational marijuana. In a quick search I found hospice organizations in Arizona, Colorado and Illinois advocating medical marijuana use for their patients. So, I'm wondering from those of you who work in states where there is either form of allowed cannabis use, do you see a different level of engagement (e.g., advocacy or prescribing) from local hospices or physicians that care for people with serious illness? Please share in the comments.

If you would like to know more about what hospice and palliative care clinicians are saying about marijuana as an option for symptom control here are links I discovered while researching this post. If you have quality links, please share in the comments below and I will check them out and potentially add them in the original post. All links are open access unless otherwise noted.

Reader provided links (added after the initial article ran)
The research literature on marijuana use exclusively in hospice and/or palliative care patient populations is quite thin. Only 110 articles on PubMed with the search criteria of (palliative OR hospice) AND (cannabis OR marijuana) (only 82 in 2015).

Medical marijuana is not without potential medical risk, especially in a population that may be seriously ill.  There have been case reports of significant Aspergillosis infections of the lung in neutropenic patients, and it is not uncommon to see transplant patients (who are necessarily immunocompromised by their treatment) to be counseled against smoking marijuana expressly because of this reason.

This post is not about taking a side, but instead a reflection on what are our (meta-)responsibilities as symptom control advocates. As we gain a larger foothold in the halls of our hospitals and our statehouses, like Oklahoma who recently passed (ACS-supported) laws that encourage more input from palliative care experts, we need to ask ourselves, "With limited time and resources, how do we help out patients best?"

It seems like the medical/recreational marijuana movement has considerable inertia behind it when it comes to changing state laws. How do you think will this change our clinical practice, our fellow education, and our research opportunities?

Christian Sinclair, MD, FAAHPM, is a palliative care physician at the University of Kansas Medical Center, editor of Pallimed, and president-elect of the American Academy of Hospice and Palliative Medicine. He has a significant interest in questions that don't always have clear answers and likes to be able to hear other people's opinions on challenging topics.

Abbreviations:
HPNA = Hospice and palliative Nurses Association
PPT = Powerpoint
NHPCO = National Hospice and Palliative Care Organization
AAHPM = American Academy of Hospice and Palliative Medicine
JPSM = Journal of Pain and Symptom Management
ACS = American Cancer Society

 Image credit: Medical marijuana neon sign by Laurie Avocado Wikimedia Commons via CC

Monday, April 20, 2015 by Christian Sinclair ·

Tuesday, March 10, 2015

Celebrate Social Workers!

by Allie Shukraft

March 2015 marks two events in the world of American hospice and palliative medicine (HPM) social worker: National Social Worker’s Month and the 60th anniversary of the National Association of Social Workers, our largest member organization.   This year’s theme is “social work paves the way for change”.  I love this theme because it brings me back to a conversation with a hospice social worker who told me why he loved his job and that I should become a social worker (I laughed at that point in time . . . little did I know).  He said that patients and families in hospice are making their way through this dark, twisted path in the forest that is illness.  They are lost and confused, and though they want to find a way out, sometimes there is none.  He said his job then was not to shine a light on the path and make it easier, nor was it to show them the way out of the forest.  Rather, it was to walk with them on their journey and be present.

So what paths are we trying to accompany our patients and families on as they navigate? Although our patients and families are each unique, there are some common paths that they may tread upon within palliative and hospice care. Social workers are there to meet the bio-psychosocial-spiritual needs of the patient and family, emphasis on the psychosocial. Yes, what we do overlaps with some of the roles of our other team members (I envision interdisciplinary team roles like a Venn diagram), but a social worker's training is specialized to meet the patients and families where they are and help them determine where they want to go. As part of our Master’s preparation, our ongoing training, and our licensure requirements, we learn about human development, psychological theory, the intricate interactions of the systems in which we operate, and many more specific skills.

On Wednesday night 3/11/15, join me for this week’s #HPM Tweetchat as we take a look at the psychosocial elements of the work we all do through discussion of the following topics:

Topic 1: what are the psychosocial needs of #HPM patients and families/caregivers?

Topic 2: what is the most difficult part of psychosocial care of the #HPM patients and family members?

Topic 3: how can we measure the effectiveness of our teams at meeting these needs of #HPM patients and family members?

Join me @alifrumcally this Wednesday night at 8pm CST to explore the concept of social work and psychosocial needs in HPM.

Special thanks to Lizzy Miles, MA, MSW, LSW and the social workers and chaplain from Carolinas Palliative Care and Hospice Network for their input on these thoughts . . . they are invaluable!

Allie Shukraft, MAT, MSW, LCSWA is a reformed high school English teacher turned pediatric palliative care social worker with Carolinas Healthcare System in Charlotte, NC.  She enjoys spending time with her family and exploring the country whenever she can.  You can find her on Twitter at @alifrumcally

 Photo courtesy NASW

Tuesday, March 10, 2015 by Unknown ·

Saturday, February 28, 2015

AAHPM Assembly State of the Science 2015

As David Currow said when he received his Excellence in Research award, hospice and palliative medicine researchers need to meticulously measure toxicity in addition to benefits of palliative interventions. How do you think the State of the Science studies did with this goal? What do you think about the conclusions of each of the studies? Any changes in your practice? Thanks to the presenters Jay Horton, Kimberly Johnson,Nick Dionne-Odom, and Cardinale Smith for reviewing and presenting. Always a fun presentation.

Saturday, February 28, 2015 by Lyle Fettig ·

Saturday, November 1, 2014

2014 Palliative Care In Oncology Symposium Review

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
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

Our palliative leaders have knocked on the door for years.

The door is open.

To be invited in, we have to bring data.

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

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

Saturday, November 1, 2014 by K Newport ·

Monday, October 27, 2014

2014 Inaugural Palliative Oncology Conference Review

by Sydney Dy, MD, MSc

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

I've tried to summarize some of the key points from some sessions of this amazing palliative oncology conference! This post focuses on those areas which were clinically meaningful or could be easily implemented in palliative care programs; all of which I brought back to my team. (There were some presentations on research or complex interventions such as decision support or telephone-based systems which showed some impact but these are not discussed in detail here because they are not as immediately relevant). Some of my own takeaways are here as well as those of the many that I talked to at the conference - I've usually tried to put these in parentheses.

Look at the tweets as well - #pallonc - there are lots of great comments there!

Symptom Management and End-of-Life Care:

Anne Walling from UCLA presented on unmet symptom management needs for cancer patients from a large national survey. Unmet needs were defined as patients who had a symptom, stated that they wanted help for the symptom, but had not received that help from their physicians. 15% of patients had an unmet need - most prevalent were fatigue, dyspnea. Poorer communication was related to a higher risk for unmet needs for symptoms.

David Einstein from Tufts presented on a survey of residents about CPR discussions in advanced cancer patients and found dissatisfaction with the discussions - although residents were aware that the patients had very low rate of possibility of surviving CPR, a minority felt that it was appropriate for them to give a recommendation about CPR - they tended to feel that patients should make their own decisions. They didn't feel that they needed more training. More senior training year was correlated with a higher rate of including a recommendation.

Joanna Paladino from Dana Farber presented beautifully on how the interventions was implemented and barriers to implementation in early results of an advance care planning intervention in oncology involving triggers and a communication guide which was provided with the billing form.

This is based on best practices in advance care planning for oncology: start early; address information needs and prognosis; focus on values, goals, priorities, psychosocial concerns; well-documented. Not just filling out an advance directive.

Most oncologists (this was a volunteer sample, and small sample to date - early in the study) did do advance care planning with included patients and document this, although it often took multiple triggers. The most important oncologist-reported barrier to having the conversations was the oncologist feeling that the timing wasn't right or that there were other priorities for that visit (not having insufficient time to have the conversation).

In the discussion - the important point was made that we should set expectations right from the start in oncology - when the oncologist has that initial conversation, it is really key that they set the tone (eg, that this will be challenging, that the

Survivorship

Patty Ganz talked about the overlap between palliative care and survivorship - it really is a continuum and both approaches should incorporate elements of the other (we try to do some survivorship work in our palliative care clinic - preparing patients for the next phase or working with those survivors who have persistent symptoms or are still on a lot of extra medications for symptoms). This is a place we can help set expectations as well - there were some different opinions expressed on this; Dr Ganz was concerned that telling patients too much about side effects could set patients up to have more problems and thought that monitoring patients more closely was a more appropriate approach, whereas others during the conference stated that patients should be educated about potential side effects (such as fatigue) up front so they would be aware that these could be related to the cancer or treatment and report them.

Julienne Bower gave a wonderful session on fatigue in survivorship and the most current research on interventions and the ASCO guidelines for fatigue. My big takeaway was the importance of a multimodal approach - things like cognitive-behavioral therapy, exercise tailored to cancer patients such as restorative yoga. We refer a lot of these patients to our local community cancer support program which offers walking programs, yoga and other targeted exercise, and support groups, and sometimes to our integrative medicine program as well. She also discussed the importance of identifying risk factors since many survivors don't develop fatigue (and fatigue certainly varies

Tim Ahles spoke about post-treatment cognitive problems and the takeaway for me was the importance of evaluating for this in patients at high risk, which we often don't address well - in particular, older cancer patients with multiple conditions have a high rate of pre-existing cognitive impairment. We know that this can affect treatment, decision-making, and caregiving and the risks of the medications we prescribe for symptom management, and it would be important to be more cognizant of this and screen for it more frequently than we do.

Lynn Henry talked about aromatase inhibitor-associated musculoskeletal symptoms, which is also a common issue and one that we've tried to work with patients in our palliative care clinic about - it can be very debilitating, but now that there are multiple options, it may be worth rotating medications. Evidence for now is for exercise and weight loss - no other good evidence currently for effective interventions, although trials ongoing.

Skills for End of Life Care
There were many lovely moments in this session  - I've tried to capture a bit of this below.

Anthony Back spoke about communication - including  PAUSE for early - Pause: take a moment to initiate, Ask permission (explain why), Understand (ask about values), Suggest: find a surrogate -Emphathize - expect emotions.  Check www.vitaltalk.org - there are suggestions for how to do all of this.

A key point is that there are ways to respond to statements such as "I only want to talk about positive things" - using empathy, asking more questions about what they mean by positive is an opportunity to ask about meaning and values and also what they're scared of. REMAP is the acronym for late EOL: Reframe (status quo isn't working), Expect emotion (empathize 1st), Map: what's important, Align: with deep values, Plan: match treatments to values.

Tony's key message was to start by giving ourselves a reminder (and to ask others to give themselves a reminder) to start doing one of these things with our patients. (What I always try to do, and ask others to do, also is to take a moment in every encounter - or at least, in every day - to reflect on this and make sure we're being present with where our patients are - and with what they are really saying or feeling.)

A couple of nice points - "do you have any pictures of that on your smartphone?" a way to connect with the patient. He also recommended the movie, "Boyhood".

BJ Miller gave us some perceptions from his Zen hospice perspective - reminded us that bringing in extra disciplines is critical (others reminded me of this is critical - bring in the SW and chaplain!  - we need these other disciplines to do good palliative care, although many of us don't have good access, we need to keep working on that).  He also talked about suffering as a universal experience and something that we can all relate to with our patients, and that there are many other types other than the physical/ prescribing medications, and that this is often what we are afraid of when we talk about dying, rather than the dying itself. (I have many patients who will say that it is the pain that they're afraid of - and it's important to empathize with this and state that we will be there for them if that happens and that there are many things we can do, rather than try to promise that we can prevent this). He reminded us about music, art, poetry, film, nature - all the incredibly important aesthetic things we can do to help relieve patients' and families' suffering (and our own as care providers). We need to pay attention and listen.

Integration of Palliative Care into Oncology

Jennifer Temel spoke about the increasing challenges of prognostication in oncology - that this will become more and more individualized and dependent upon patients' responses to treatment - need to work closely with oncology colleagues to communicate about prognosis, especially early in patients' cancer care. (It also depends on many factors that may not be in prognostic tools and on trajectories over time, which the longitudinal oncologist may better address). She also spoke about the critical importance of individualizing palliative care, which others also addressed at the conference - it's not one size-fits-all, and often needs to change over time. She also spoke about the infeasibility of implementing these very intensive palliative care interventions from the Temel and Zimmerman clinical trials into practice in most settings. She also stressed that even when the oncologist is very skilled in palliative care, there is often still a role for palliative care - the patient may not want to/ feel comfortable discussing these issues with the oncologist who they're afraid might stop chemo or are their hope for improving survival - and the patient may be willing to address these issues with a palliative care clinician. It really should be an integrated/collaborative care model, not a referral model to specialty palliative care. (One comment was the more palliative care you have, the risk is that the oncologists may be doing it less themselves - Ifor example: when an oncologist doesn't deal with the pain at all, and the patient suffers for 2 weeks until the palliative care appointment happens. Just something to watch out for).

Jamie von Roenn - "Palliative care ALWAYS" - anticancer treatment sometimes". (This approach might make our fellows/oncologists/radiation oncologists more comfortable with the fact that with offering palliative care interventions, such as symptom management, they are always doing something for the patient.) Also, she made an impassioned statement that often when oncologists say that the chemotherapy is "palliative" - we should really be using this term for chemotherapy which is given with the primary purpose of relieving symptoms, which is rarely the case - if it's given with the purpose of increasing survival, for patients with symptoms unlikely to be helped by the chemotherapy (or where the chemotherapy is more likely to make them feel worse), or when the patient is taking the chemotherapy with the intent of cure - we should not be calling that palliative chemotherapy.

Psycho-oncology
Dr James Zabora gave the SW/psychosocial perspective and focused on the importance of the availability and use of psychosocial interventions, many of which have a strong evidence base. He discussed the PLISSIT approach to evaluating sexuality - that we should be asking about it more, and the first step is asking permission - and the HOPE approach to spirituality. He really focused on using a problem-solving approach, which includes specific skills, rather than just addressing coping, and discussed that there were many psychosocial interventions with a strong evidence base (that may be available through community-based cancer organizations if not at your institution).

Posters

There were a lot of great posters and the discussions and environment were very stimulating - I didn't get to see a lot of them, but they should all be available through the virtual meeting - here are a few that stood out. In particular, there were many posters on integrating palliative care into outpatient oncology in a variety of settings and countries with many perspectives, such as the poster by Mary Buss - a key point that I took away is that many people are doing this, but it is likely most practical/appropriate for patients later in the course of the disease, rather than at the time of diagnosis, in actual practice, given limited resources and the challenges of screening effectively.  Sarah Livermore presented on the use of delirium screening in outpatient palliative care using a newly validated tool, the FAM-CAM, that I am going to go back and try.

And a shout out to my great colleagues from Hopkins - our oncology palliative care team, presented by Colleen Apostol that screening  cancer inpatients at risk for critical care and promoting goals of care meetings for those patients was associated with reduced use of critical care and increased use of hospice. And from one of our fellows, Isaac Bromberg, that only half of oncology inpatients who went to acute rehabilitation ever got more chemotherapy, and of those who didn't, almost all died within 6 months - so that consideration of acute rehabilitation should include consideration of palliative care consultation as well.

The palliative oncology conference will be in Boston again next year - it sold out before the early bird deadline - I highly recommend this conference and if you're interested, be sure to sign up early! And for those of you who are not physicians - there was some interdisciplinary content, but could certainly be much more - would be great to see some other types of professional societies (eg, HPNA) be involved as sponsors of the meeting and have more presentations from other specialties, as we have with the AAHPM-HPNA meeting.  There is also a virtual meeting available (pallonc.org/arc) and many of the posters, etc are online.

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

Monday, October 27, 2014 by Pallimed Editor ·

Sunday, July 7, 2013

The agony & the ecstasy of EBM in symptom management

So, I decided I might blog a little again. Probably the occasional Journal Club of the Cloud-type posts. Christian and fellow bloggers, thank you for all you do in keeping Pallimed thriving and relevant.

So, Eduardo Bruera & colleagues at MD Anderson have published the results of their long-awaited follow-up trial to their 2006 double-blinded, placebo controlled trial suggesting that methylphenidate (MP) is no better than placebo for cancer-related fatigue (CRF).

In the 2006 trial, most patients had a marked improvement in fatigue across the 2 weeks of the trial. This lead the investigators to hypothesize that perhaps it was the frequent research nurse calls, that both the active and placebo groups received, that caused the fatigue to improve.

Thus, the 2013 trial is really a 2x2 trial comparing both methylphenidate and placebo, as well as a nursing telephone intervention vs a control telephone intervention (ie there were 4 groups: MP + nursing call, MP + control calls, placebo + nursing call , placebo+control calls). The investigators and patients were blinded to allocation. Notably, the main drug intervention was giving patients 5mg MP tabs (or matching placebo), and encouraging them to use it q2h prn, up to 4 doses a day, for fatigue. This is the identical protocol to the 2006 trial. The patients all had cancer and were recruited from the MD Anderson clinics (median age 58 years, 67% woman, 72% white, baseline fatigue was self-reported as 6-7/10). As far as I can tell there was no restrictions to enrollment based on stage of cancer or chemotherapy history. 

The nursing calls involved both symptom assessment, plus 
During each call, the research nurse asked open-ended questions regarding general well-being of the patient and family. The research nurse listened empathetically, answered the patient's questions, provided supportive statements, and then ended the telephone call.
The control calls were just the administration of a symptom assessment instrument and questions about medication use - any concerns the patient expressed were directed towards their physician.

The primary outcome was improvement on the FACIT-F fatigue subscale at 14 days; as usual many secondary outcomes were evaluated. They estimated a sample size of 212 to detect a 33% difference between MP and placebo outcomes (190 were actually allocated; 151 were evaluable).

Basically, the results were a wash. MP was no better than placebo, therapeutic nursing calls were no better than the control calls for fatigue. All 4 groups' fatigue improved, basically by 2 points on a 0-10 scale. Several non-fatigue symptoms significantly improved in the nursing call group that did not improve in the control call group (nausea, anxiety, drowsiness, appetite, sleep, and 'feeling of well-being'). Notably, the median number of MP capsules used was 18 over 14 days (=6.2 mg/day) and the maximum used was 36 (=13mg/day). To be clear, while the trial is under-powered somewhat, there really is not even a trend towards improvement with MP. As usual, MP was well-tolerated and safe.

So, what to do with this? First, there have been a couple recent studies on MP for CRF that are relevant. First is a RCT of controlled-release MP (pushed to 54 mg daily) for cancer patients which did not show any benefit overall. However, for the subset of patients with advanced cancer (defined here as stage III or IV), MP did improve fatigue vs placebo (statistically significant; probably clinically significant). Next is a RCT of dexmethylphenidate ("Focalin," which I must remark, reminds me so much of this) in150 patients with fatigue after cytotoxic chemotherapy (unclear to me how many of these patients had advanced cancer; one's sense after reading the study is that probably most of them had neo/adjuvant chemotherapy but I don't know that for sure). These patients were pushed to ~25mg of dexmethylphenidate (presumably equal to 50mg of racemic MP?) for 8 weeks and were found to have improved fatigue compared to placebo.

I guess, despite this blog post's title, there's really not much ecstasy when it comes to EBM in symptom management. We have 3 trials, all using different drug protocols, all looking at at overlapping-but-different patient populations, with conflicting results. This is why I employ the cardinal rule that one should never even consider making a practice change based on a single research paper, without actually reading the entire paper. Reading Bruera's abstracts, one could conclude that MP is worthless. Digging deeper, those studies are using MP in ways different than I do in my actual practice - in particular at substantially lower doses than I generally employ. The dex-MP study seems promising, but I can't even figure out from reading it if those patients resemble most of mine (I see some patients with curable cancers receiving adjuvant chemotherapy, but most of my patients have advanced cancers). And the controlled release MP study makes me tempted to break cardinal EBM rule #2: one should, in general, treat secondary outcomes as hypothesis-generating more than clinically relevant.

My own experience is that most patients, ~2/3, don't respond to MP. They stop it after a few weeks, after they've let me push it to 20-30 mg daily.  ~1/3 however seem to respond, evaluate their quality of life as better on it, and we continue it. Maybe 10% it's a wonder-drug: patients feel markedly improved on it and it makes a huge impact on their quality of life. These numbers are gross estimates-I have not systemically evaluated my own outcomes.

Which has got me thinking, what data would I need in order to stop using MP? Which is another way of asking the question what is the purpose of EBM, clinical trials, in symptom management, where everything is always an N=1 trial.  Compare for instance statins for the secondary prevention of cardiovascular disease and, say, amitriptyline to treat post-herpetic neuralgia. We give statins because there are large, RCT telling us that if we do we'll prevent a few MIs over the years in a few patients. We don't know for any one patient if giving them a statin will actually do anything. We can measure their LDL, but that's really of secondary importance to actually preventing them from having another heart attack, or stroke, etc. In fact, we have no real way of measuring efficacy of statin therapy in any individual patient. If they never have another MI or stroke, good, but maybe they wouldn't have anyway, or if they do have one, maybe it's two years later than it would have been without the statin, etc. The point is, the only way we can measure the efficacy of that statin is across a population of people. Which is why we have large, well-designed RCT. This is why for a decade we were all going for very tight glycemic control for diabetics - out of the belief that across a population of diabetics we would be reducing sufficient number of MIs, strokes, kidney failure, retinopathy, etc to be worth all the extra patient hassle, expense, and morbidity (even death) associated with aiming for tight control (I personally think it remains unclear if we've actually done our diabetics a favor by doing this).

Amitriptyline for PHN: you give it to the patient, ask them in a few days if it's working or not, maybe a week, then increase the dose, reassess in a few days or a week, then maybe readjust up again or abandon amitriptyline completely for another agent.  Ie, with symptom management we basically have immediate & patient-relevant data on efficacy.

So what, then, is the point of EBM and doing these studies? I think it's several-fold. One is to give us some guidance as to what's more likely to work (what we should go to first); eg, SNRIs for chemotherapy related neuropathy. The fact that SNRIs have been the only agents ever to be shown to be effective for the pain from chemo neuropathy has not stopped me from trying other things, it's just that now I go to the SNRIs first. Two is to give us a sense of safety, side effects, toxicities - incredibly important. Three is to give us a sense of what probably works via placebo mechanisms vs other mechanisms. The bind I get into is with this one - with interventions that I 'witness' working, sometimes dramatically, albeit on occasion, that all the evidence points to works via placebo mechanisms. AB(H)R gel, infamously. Lidocaine 5% patches for everything except painful syndromes involving damaged peripheral axons such as diabetic neuropathy, post-herpetic neuralgia. Ketamine, after the Currow trial, which to me was more damning due to evidence of harm from ketamine than lack of efficacy (still waiting, for blinded, controlled depression data for ketamine)? Kyphoplasty?

Personally, I don't include methylphenidate on this list - I think the data, as a whole, support the idea that it is helpful, probably at higher doses (ie higher than 15mg a day) for some patients with severe disease or fatigue.

Please leave your thoughts, particularly about the use of interventions that, in your heart and EBM-brain, you think actually work entirely or mostly via placebo mechanisms.
  

Sunday, July 7, 2013 by Drew Rosielle MD ·

Sunday, March 17, 2013

State of the Science from the 2013 AAHPM Annual Assembly

The State of the Science plenary is one of my favorite traditions at the AAHPM Annual Assembly.   This year, Jay Horton and Kim Johnson took the lead in presenting analyses of some of the previous year's most important hospice and palliative medicine research.  For those attendees interested in seeing their slides again, you can find them here.

Some of the research below further confirms our previous understanding of the state of the science (for instance, the studies on the low utility of feeding tubes in many circumstances).  Other studies provide quality randomized controlled trial data on questions which have nagged our field but where previous RCT data are minimal or completely lacking (e.g. parenteral fluids near end of life and ketamine for cancer pain).

We'd love to hear what you think about each study.  Feel free to comment on the blog.  If you like a study, you can further disseminate it by Retweeting it directly from this post! 










Sunday, March 17, 2013 by Lyle Fettig ·

Monday, March 26, 2012

Blogs to Boards: Question 2


This is the first in a series of 41 posts from both GeriPal and Pallimed to get our physician readers ready for the hospice and palliative medicine boards. Every week GeriPal and Pallimed will alternate publishing a new question, as well as a discussion of possible answers to the question (click here for the full list of questions).  

We welcome comments about any aspects of the questions or the answers/discussions.  The feedback that we hope to get in the comment sections of the post will help us all learn important aspects for the boards. We also welcome an interdisciplinary viewpoint when answering these questions, so even if you are not taking the medical boards, your input is still very much welcome.

Walking into a room at your hospice inpatient unit you see a tired appearing female patient lying in bed with soft moaning, holding her abdomen. She has end stage CHF and no history of cancer. Review of your notes show decreasing oral intake and increased time in bed. Her nurse reports she disimpacted her yesterday after suppositories and enemas were ineffective for worsening constipation.

Medications include: Fentanyl 50mcg patch (on for several weeks), Senna 2 tabs BID, Colace daily, Recent enema, and docusate suppository
Exam: Cachectic female, Scaphoid abdomen, hypoactive bowel sounds, formed (but not hard) stool on rectal exam.

What is the next best step?
a) Write an order for methylnaltrexone 8mg subcutaneously x1 now.
b) Switch her from a fentanyl patch to a morphine pump so you can better manage her abdominal pain.
c) Write an order for octreotide 200mcg subcutaneously twice daily for three days.
d) Place an NG and give her polyethylene glycol daily until she has a bowel movement or regains ability to swallow and you can remove the NG tube

Discussion:

Monday, March 26, 2012 by Christian Sinclair ·

Wednesday, October 19, 2011

Oncology Patients in the Emergency Department

Dusting off the Blogger account and checking in......

JCO published a population-based snapshot that looks at the characteristics of patients with cancer who visited emergency departments in North Carolina during 2008. Lung cancer was the most common cancer identified in visits by a significant margin while breast, prostate, and colorectal cancer were each identifed in a smaller number of visits. Patients with lung cancer were more likely to be admitted to the hospital with a total of 63% of all ED visits for patients with cancer resulting in an admission. The top three complaints included pain, dyspnea, and gastrointestinal complaints. More ED visits occurred during night and weekend hours than regular office hours.

Few brief thoughts/questions to ponder:
  • What percentage of the ED visits were preventable? What systems could be introduced to prevent the visits? (Urgent clinic availability, telemedicine, enhanced home health, etc)
  • Would these system changes result in a more timely manner and would that result in reduced need for hospital admissions?
  • As a palliative care clinician, it's not a surprise to see lung cancer disproportionately represented. One of the results of the Temel et al study regarding palliative care involvement from the time of metastatic NSCLC diagnosis was reduced hospital admissions/ED visits. It's not clear what the "mechanism of action" is, but improved access to a team that can help with the top symptoms certainly is one plausible hypothesis.
  • What is the "right number" of appropriate ED visits/hospital admissions? Hard to say, but palliative care as a field should actively work to help our oncology colleagues to push the numbers as low as possible. As much as I like my ED colleagues, the ED is not a fun place to be.

Wednesday, October 19, 2011 by Lyle Fettig ·

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