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Research & Retreats: An Inside Look from AAHPM President Christian Sinclair

Each year, AAHPM awards a number of scholarships to deserving individuals to attend the Annual Kathleen M. Foley Palliative Care Retreat & Research Symposium through the Research Scholars Program. Congratulations to our 2016 recipients! Gain an insider’s view of the retreat from current AAHPM President Christian Sinclair.

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During this year as president of the American Academy of Hospice and Palliative Medicine (AAHPM), I am privileged to hear about many of the great things happening in our field. This past week I attended the Kathleen Foley Palliative Care Retreat and Research Symposium in Quebec City where junior and senior researchers gathered for education, networking and mentorship.  Dr. Sean Morrison and the National Palliative Care Research Center (NPCRC) were responsible for convening this grand meeting as they had done for the past nine years.  This year’s co-sponsors included the American Cancer Society (ACS), AAHPM, the Hospice and Palliative Nurses Association (HPNA), Gordon and Betty Moore Foundation, and Emily David and Joseph S. Kornfeld Foundation.

Like many of you, I am not a researcher, but I do consider myself quite a big fan of research, as it helps establish the foundations for our interventions and ability as a field to change systems of care. The researchers invited were a diverse group of nurses, psychologists, social workers and physicians holding grants supported by the NPCRC and ACS, research scholarships from AAHPM and HPNA, and other leaders, investors, and supporters of the field of palliative care.

During the two days of content, the approaches to learning were varied, from classic didactics from Vincent Mor, Ab Brody, Susan Mitchell and others, to the poster presentations and work-in-progress sessions from many of the junior investigators. Names that you recognize from articles like Tulsky, Arnold, Temel, Ritchie, Kutner, Teno, Ferrell, Mor, Mitchell, Wolfe and others were there to give feedback to early- and mid-career researchers as they presented their work. The camaraderie and mutual admiration was evident from the many conversations I observed and participated in.

One of the big themes at this 10th Foley Retreat, was looking to the future. The NPCRC had already accomplished many of the early goals of creating a stronger research pipeline through support of early-career scientist-clinicians, yet open discussions were held to best plan for the future in an ever-shifting funding landscape. Many felt that the support from the NPCRC and aligned organizations (like AAHPM and others) was critical to maintaining the momentum by helping palliative care researchers get started wherever they are, especially when there are only a handful of institutions able to crank out the studies we need as a young field.

Like the opportunity to visit with those preparing for the boards and hospice medical directors at this year’s Summer Institute, I am very appreciative to see the diversity of professional focus in hospice and palliative care. At the heart of these experiences is fellow hospice and palliative care clinicians supporting each other, which is one of the reasons I love this field and support the Academy.

A One-On-One with Extremis’ Dr. Jessica Zitter

In September 2016, Netflix released an original documentary, “Extremis”; a 24-minute account of the end of life experience in an ICU setting. The AAHPM member featured in the documentary, Jessica Zitter, MD, recounts her journey to becoming a hospice and palliative medicine physician and her idea for the documentary.

“In 2009, I realized the need for a movie addressing the state of dying in the Intensive Care Unit.  I had just seen “The Waiting Room,” a documentary which depicted the humanity and suffering of patients in the ER of Highland Hospital, the county hospital for Oakland, California.  I had just started working there a few months earlier.  I was blown away by the film’s rich visuals and gripping stories.  I wanted to bring that same lens to the issue of medical decision-making in the Intensive Care Unit. In this high-stakes environment, dying patients are often put on what I call the “End of life Conveyor Belt:” lined up for default high-technology life-prolongation, often without their consent or understanding.

It was a topic I couldn’t stop thinking about — although it hadn’t started out that way.  When I was a young attending in the ICU at University Hospital in Newark New Jersey, I was all about life-prolongation, always seeking that high-technology heroic rescue.  But an awareness was dawning that something wasn’t quite right.  I just didn’t know exactly what.  Then in 2003 the burgeoning Palliative Care movement found me, and rescued me from my growing moral distress.  By a stroke of luck, I happened to work at the University of Medicine and Dentistry of New Jersey (now called New Jersey Medical School), one of only four institutions to receive a grant from the Robert Wood Johnson Foundation to improve communication in ICUs.  These grants were part of RWJ’s larger initiative called Promoting Excellence in End of Life Care, run by our own Dr. Ira Byock. They were awarded in March 2003, and I was hired at UMDNJ in May of the same year.

I knew nothing about this grant until I was introduced to the members of the “family support team,” the precursor to what would become the Palliative Care team years later.  I saw them roaming the rooms of our ICU, clipboards in hand, asking patients questions I would never have thought to ask: did they understand what was going on, what was important to them, were they in pain?  Although I was initially resistant to the team’s remonstrations – “Why are you putting that catheter into a dying patient without telling her family she is dying?”- I quickly realized they were raising critical issues. Before I knew it, I was a convert. Under the guidance of Pat, the advance practice nurse who led the team, I began to practice more patient-centered care, and later passed my Palliative Care boards.  Over the ensuing years, I’ve become convinced that the Palliative Care toolbox is absolutely crucial to patient-centered practice in the ICU.

After seeing “The Waiting Room” I approached the director, Peter Nicks, and asked him if he would be willing to put a face on the suffering of patients in the ICU.  There were so many patients receiving non-beneficial and even harmful treatment, I told him. Pete, busy on another project, introduced me to Dan Krauss, who went on to direct “Extremis.” Dan, although an outsider to medical culture, was able to bring incredible sensitivity and insight to this very complex world.


I’m thrilled, and a little astonished, at the response to the film.  The initial Netflix trailer went viral, garnering an unprecedented 5.5 million views in the first three days. I believe that this indicates the potential for change in both the lay and medical communities. I am in the process of creating a teaching curriculum for medical professionals and trainees which will focus on some problematic areas within our current medical culture, particularly in the ICU, and begin to explore structural solutions for change. I hope soon to be able to provide this curriculum to the many medical schools and communities contacting me with interest in using the film in a teaching capacity.

I’ve been spending the last year working hard on a book about these issues, Extreme Measures.  The book will be published by Penguin-Random House on February 21, the day before the AAHPM conference in Phoenix.  My hope is that both the book and the movie will serve to support this movement and help show us all the need for change in the way we approach death and dying—both the lay public and the medical professionals who, like me, may have been blinded by their training.”

AAHPM will hold a book signing with Dr. Jessica Zitter at the Annual Assembly on Thursday, February 23 at 5:30pm in the Exhibit Hall. Copies of her book “Extreme Measures; Finding a Better Path to the End of Life” will be sold at the AAHPM Resource Center at Assembly.

Highlights of the October Issue of the Journal of Pain and Symptom Management

Listed below are a few articles from the most recent issue of the journal:

Special Series on Measuring What Matters

Care Consistency with Documented Care Preferences: Methodologic Considerations for Implementing the Measuring What Matters Quality Indicator

Kathleen T. Unroe, Susan E. Hickman, Alexia M. Torke, and the AAHPM Research Committee Writing Group

Original Articles

Impact of Prophylactic Fentanyl Pectin Nasal Spray on Exercise-Induced Episodic Dyspnea in Cancer Patients: A Double-Blind, Randomized Controlled Trial

David Hui, Kelly Kilgore, Minjeong Park, Janet Williams, Diane Liu, and Eduardo Bruera

Randomized Pilot Trial of a Telephone Symptom Management Intervention for Symptomatic Lung Cancer Patients and Their Family Caregivers

Catherine E. Mosher, Joseph G. Winger, Nasser Hanna, Shadia I. Jalal, Lawrence H. Einhorn, Thomas J. Birdas, DuyKhanh P. Ceppa, Kenneth A. Kesler, Jordan Schmitt, Deborah A. Kashy, and Victoria L. Champion

Palliative Care Specialist Consultation Is Associated With Supportive Care Quality in Advanced Cancer

Anne M. Walling, Diana Tisnado, Susan L. Ettner, Steven M. Asch, Sydney M. Dy, Philip Pantoja, Martin Lee, Sangeeta C. Ahluwalia, Hannah Schreibeis-Baum, Jennifer L. Malin, and Karl A. Lorenz

To access the articles, you must subscribe to JPSM or be a member of the American Academy of Hospice and Palliative Medicine (AAHPM). For further information on the Academy, call 847.375.4712 or visit aahpm.org.

Submitted by: David Casarett, MD MA, Senior Associate Editor, JPSM

Highlights of the September Issue of the Journal of Pain and Symptom Management

Listed below are a few articles from the most recent issue of the journal:


Cost Analysis and Policy Implications of a Pediatric Palliative Care Program

Daphna Gans, Max W. Hadler, Xiao Chen, Shang-Hua Wu, Robert Dimand, Jill M. Abramson, Betty Ferrell, Allison L. Diamant, and Gerald F. Kominski


An Intervention to Enhance Goals-of-Care Communication Between Heart Failure Patients and Heart Failure Providers

Ardith Z. Doorenbos, Wayne C. Levy, J. Randall Curtis, and Cynthia M. Dougherty


Level of Discomfort Decreases After the Administration of Continuous Palliative Sedation: A Prospective Multicenter Study in Hospices and Palliative Care Units

Rogier H.P.D. van Deijck, Jeroen G.J. Hasselaar, Stans C.A.H.H.V.M. Verhagen, Kris C.P. Vissers, and Raymond T.C.M. Koopmans


Symptom Burden and End-of-Life Treatment Preferences in the Very Old

Steven M. Albert, June R. Lunney, Lei Ye, Robert Boudreau, Diane Ives, Suzanne Satterfield, Hilsa N. Ayonayon, Susan M. Rubin, Anne B. Newman, and Tamara Harris, for the Health ABC Study

To access the articles, you must subscribe to JPSM or be a member of the American Academy of Hospice and Palliative Medicine (AAHPM). For further information on the Academy, call 847.375.4712 or visit aahpm.org.

Submitted by: David Casarett, MD MA, Senior Associate Editor, JPSM

Advancements on PCHETA Bill

Read the official press release from the Alzheimer’s Association and Hospice of Southern Maine.

Pingree, Collins, local agencies advocate passage of
Palliative Care and Hospice education bill

Legislation would provide expanded education, training, research and awareness of palliative care impact

SCARBOROUGH, Maine (Sept. 19, 2016) – Congresswoman Chellie Pingree joined representatives of the Alzheimer’s Association, Maine Chapter, Hospice of Southern Maine, Senator Susan Collins’ office and other organizations this morning at Gosnell Memorial Hospice House to support pending legislation, The Palliative Care and Hospice Education and Training Act (S. 2748/H.R. 3119 AKA PCHETA – https://www.congress.gov/bill/114th-congress/house-bill/3119/text).

“Access to high quality palliative and hospice care is so important to relieve suffering and improve quality of life for people with Alzheimer’s and other dementias,” said Rep. Pingree. “But the truth is there isn’t adequate training and education available to meet the need.  We must put more focus on training the palliative care workforce and invest in more research to make sure that patients and their families are getting the best possible care in times of their greatest need. This is an area where almost everyone has been affected in one way or another.”

Nearly half of all people with Alzheimer’s and other dementias are in hospice care at the time of their death. For people with advanced dementia, palliative and hospice care – which focuses on managing and easing symptoms, reducing pain and stress, and increasing comfort – improves quality of life, controls costs, and enhances patient and family satisfaction.

But, as the demand for such care grows with the aging population, more must be done to ensure an adequately trained workforce.

“Palliative and hospice care is a demanding field that requires a well-trained workforce of doctors, nurses, and other healthcare professionals,” said Senator Susan Collins in a letter. “Additional research is needed to develop and expand best practices for those with serious illnesses. The Palliative Care and Hospice Education and Training Act will accelerate our progress towards these objectives.

“We are proud to support the Palliative Care and Hospice Education and Training Act on behalf of the five million Americans currently living with Alzheimer’s disease and other dementias,” said Laurie Trenholm, Alzheimer’s Association, Maine Chapter Executive Director. “For persons in the advanced stages of this terminal disease, palliative and hospice care can improve both the quality of care and quality of life.”

“Increasingly, patients and families afflicted with Alzheimer’s, dementias and other serious diseases are realizing that there may be an alternative to aggressive hospitalization and invasive treatments that diminish quality of life,” said Daryl Cady, Hospice of Southern Maine CEO. “We believe that access to high quality palliative and hospice care is vitally important in helping relieve pain, managing symptoms and improve the quality life for all individuals. PCHETA is one important step towards ensuring more Mainers and Americans have access to this high-quality care.”

On September 24, Alzheimer’s Association, Maine Chapter and Hospice of Southern Maine both hold their biggest annual awareness events – The Walk to End Alzheimer’s in the morning at Payson Park and Twilight in the Park in the evening at Deering Oaks. This year’s cooperative day of events takes on new significance as both organizations support and raise awareness of PCHETA and the impact it brings to Maine.

Pictured above: Rep. Chellie Pingree (D-Maine) (pictured center) met today with Laurie Trenholm (left), Executive Director, Alzheimer’s Association, Maine Chapter and Daryl Cady (right), CEO, Hospice of Southern Maine for a press conference to support and raise awareness of The Palliative Care and Hospice Education and Training Act (H.R. 3119 AKA PCHETA).

About PCHETA
The Palliative Care and Hospice Education and Training Act (S. 2748/H.R. 3119 AKA PCHETA) is a bill to amend the Public Health Service Act to increase the number of permanent faculty in palliative care at accredited allopathic and osteopathic medical schools, nursing schools, social work schools, and other programs, including physician assistant education programs, to promote education and research in palliative care and hospice, and to support the development of faculty careers in academic palliative medicine.

About Alzheimer’s Association, Maine Chapter
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. Visit alz.org® or call 800.272.3900.

About Hospice of Southern Maine
Hospice of Southern Maine’s mission is to provide compassion, care, and comfort through end of life. Formed through a collaborative effort among York and Cumberland County leaders and health care providers, Hospice of Southern Maine (HSM) organized in 2001 and began providing direct patient services in 2004. Today, HSM cares for more than 1,500 patients annually, at the patient’s home, current care facility, or Gosnell Memorial Hospice House, an 18-bed inpatient facility in Scarborough. HSM admits patients with a variety of diagnoses, including Alzheimer’s; heart, lung, and kidney diseases; stroke; Lou Gehrig’s disease; and cancer. Care is patient-centered with family support, and provided by a comprehensive interdisciplinary team of physicians, nurses, social workers, aides, chaplains, grief counselors, and volunteers. Hospice of Southern Maine is a non-profit 501(c)3, Medicare certified, state licensed agency, and the largest provider of hospice services in Southern Maine. To learn more, visit www.hospiceofsouthernmaine.org.

For more information, please visit www.hospiceofsouthernmaine.org or www.nhpco.org.

For questions about this release, please contact

Kristin Melville
Hospice of Southern Maine
207-289-3658
kmelville@hospiceofsouthernmaine.org

Adam Lacher
Alzheimer’s Association, Maine Chapter
207-772-0115
alacher@alz.org

Highlights of the August Issue of the Journal of Pain and Symptom Management

Listed below are a few articles from the most recent issue of the journal:

Hospice Enrollment After Referral to Community-Based, Specialist-Level Palliative Care: Incidence, Timing, and Predictors

Alexa Riggs, Brenda Breuer, Lara Dhingra, Jack Chen, Barbara Hiney, Maureen McCarthy,

Russell K. Portenoy, and Helena Knotkova

A High-Touch Model of Community-Based Specialist Palliative Care: Latent Class Analysis Identifies Distinct Patient Subgroups

Lara Dhingra, Nathan F. Dieckmann, Helena Knotkova, Jack Chen, Alexa Riggs, Brenda Breuer, Barbara Hiney, Bernard Lee, Maureen McCarthy, and Russell Portenoy

Differences in Terminal Hospitalization Care Between U.S. Men and Women

Erica Just, David J. Casarett, David A. Asch, Dingwei Dai, and Chris Feudtner

Prevalence of Sudden Death in Palliative Care: Data From the Australian Palliative Care Outcomes Collaboration

Magnus Ekstrom, Maxwell T. Vergo, Zainab Ahmadi, and David C. Currow

To access the articles, you must subscribe to JPSM or be a member of the American Academy of Hospice and Palliative Medicine (AAHPM). For further information on the Academy, call 847.375.4712 or visit aahpm.org.

Submitted by: David Casarett, MD MA, Senior Associate Editor, JPSM

Highlights of the July Issue of the Journal of Pain and Symptom Management

Listed below are a few articles from the most recent issue of the journal:

Special Series on Measuring What Matters

Assessing Emotional Suffering in Palliative Care: Use of a Structured Note Template to Improve Documentation

Sangeeta Lamba, Ana Berlin, Rebecca Goett, Christopher B. Ponce, Bart Holland, Susanne Walther, and the AAHPM Research Committee Writing Group

Original Articles

Dexamethasone for Dyspnea in Cancer Patients: A Pilot Double-Blind, Randomized, Controlled Trial

David Hui, Kelly Kilgore, Susan Frisbee-Hume, Minjeong Park, Anne Tsao, Marvin Delgado Guay, Charles Lu, William William, Jr., Katherine Pisters, George Eapen, Frank Fossella, Sapna Amin, and Eduardo Bruera

OnabotulinumtoxinA Improves Pain in Patients with Post-Stroke Spasticity: Findings from a Randomized, Double-Blind, Placebo-Controlled Trial

Jörg Wissel, Vaidyanathan Ganapathy, Anthony B. Ward, Jörgen Borg, Per Ertzgaard, Christoph Herrmann, Anders Haggstrom, Mohamed Sakel, Julia Ma, Rozalina Dimitrova, Antony Fulford-Smith, and Patrick Gillard

Fentanyl Pectin Nasal Spray versus Oral Morphine in Doses Proportional to the Basal Opioid Regimen for the Management of Breakthrough Cancer Pain: A Comparative Study

Sebastiano Mercadante, Federica Aielli, Claudio Adile, Andrea Costanzi, and Alessandra Casuccio

To access the articles, you must subscribe to JPSM or be a member of the American Academy of Hospice and Palliative Medicine (AAHPM). For further information on the Academy, call 847.375.4712 or visit aahpm.org.

Submitted by: David Casarett, MD MA, Senior Associate Editor, JPSM

The Faculty’s Top 5 Reasons to Attend the AAHPM Board Review Course

The Summer Institute will be featuring an Intensive Board Review Course on July 25-27 in Pittsburgh, PA. Get ready for your Hospice and Palliative Medicine board certification examination by experiencing this redesigned program which includes didactic presentations, interactive sessions and exam-style questions.

1)      You’re awesome.  Let’s face it, other fields may have some nice folks, but I’ve never meet a community like AAHPM.  Where else are you going to meet hundreds of bright, articulate, and compassionate people with well-honed listening skills?  Find friends and colleagues that you’ll enjoy seeing throughout your career.  It’s time to meet your tribe, and your tribe is exceptional.

2)      “This is only a test.”  Beyond a few hours of clicking answers, possessing deep understanding of your field and of the human experience will offer personal and professional benefits throughout your life.  Prepare for the REAL test – the test at the bedside. Mastery of hospice and palliative medicine comes with interacting with the material and challenging yourself and your colleagues.  Start your career strong!

3)      It’s not for everyone.  You know that lucky person who got to see the stadium-packing rock band in an intimate venue 20 years ago?  This is your one-time chance to spend a full day in an intimate setting, having direct interaction with palliative care experts.  While the larger annual assembly offers packed conference rooms and lots of excitement, this is something far different: an opportunity to be up close and personal.

4)      Improve your chances.  There are many joys of practicing in hospice and palliative medicine.  Sitting in a testing room is not one of them.  Do this well and do this once!

5)      Pittsburgh.  Yes, really.  This a great American city that is too-often overlooked.  Enjoy the panoramic views from the Dusquene Incline.  Join us for a Pirates game, visit the Andy Warhol Museum, or enjoy the waterfront trail loop at Three Rivers Park.  Beauty and wonder are there to be found if you only take the time to look.

The early bird rate ends Tuesday, June 28. Register now and save!

A Take on the Hospice Course – From the Presenters

The Summer Institute is featuring Hospice Practice is Changing – Take Charge! where you can learn the latest knowledge and tools to advance your practice and prepare for what’s coming. See what the presenters have to say about this upcoming course in Pittsburgh, PA, July 26-27, 2016.

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Deepen your knowledge and understanding of the Medicare hospice benefit to ensure your hospice is providing and documenting care that aligns with regulatory compliance.  This course will include a review of the basics, plus discuss regulatory changes and challenges – including relatedness, eligibility, narrative construct, and the new payment model – a worthwhile investment for all hospice medical directors, novice or seasoned!

- Ruth Thomson, DO FACOI FAAHPM HMDC, Chief Medical Officer at Hospice of Dayton, Inc.
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Learn how healthcare reform is likely to impact the hospice industry as we move to a value based reimbursement system. Identify benchmarks to monitor for your hospice organization to keep you in compliance and away from the auditors!

- Janet Bull, MD, Chief Medical Officer at Four Seasons

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Learn how to “debride” those insanely long lists of medications and make solid, evidence-based decisions about which ones are worth keeping and which medications can be “voted off the island.” We will introduce you to a 5 step process of deprescribing and discuss common classes of medications that leave us scratching our head: statins, PPI’s, anticoagulation, and medications used for dementia, COPD and diabetes. Everyone wins when the medications are directed the most benefit and least risk!

- Kathryn Walker, PharmD BCPS CPE, Senior Clinical Director of Palliative Care at MedStar Health
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Haven’t taken a day for yourself in months—or years?! Come rejuvenate, rewind, relax and revisit the core of what brought you into caring for dying patients and their families. Discover the latest research on burnout and the innovative approaches recently developed to promote resiliency in those of us working in overburdened hospice and palliative care teams. Network with physician colleagues and engage in topics from leadership opportunities to regulatory compliance. Let your mind and spirit be nurtured for a few days this summer – you’ll leave feeling confident and focused on how to grow and prosper in your role in hospice care.

- Kathleen Faulkner, MD FAAHPM, Good Shepherd Community Care

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A whirlwind tour of pain management topics ranging from bread and butter issues to more difficult situations and a few cutting edge techniques as well.

- Bruce Scott, MD FACP, HMDC, Assistance Professor of Internal Medicine, Wright State Physicians
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Learn more at www.aahpm.org/summerinstitute. Register soon. The early bird rate ends June 28.

AAHPM Provides Consultation to National Board of Medical Examiners on USMLE Step Exams

Physicians in all subspecialties care for patients with serious illnesses, terminal illnesses, and those near death. There is increasing discussion of the need for all physicians to have basic palliative care skills relevant to their own individual subspecialties, in order to optimally care for patients with serious illnesses. The foundational knowledge necessary to provide this care is laid in medical school and further developed and honed in residency and fellowship training. Passing the USMLE Step Examinations is required to become a licensed physician, and many training programs use those scores as part of their acceptance criteria to residency and fellowship.

In late 2015, AAHPM submitted a request to National Board of Medical Examiners (NBME) requesting that experts in hospice and palliative medicine be given an opportunity to assess the extent to which the United States Medical Licensing Examination (USMLE) Step examinations test essential palliative care knowledge necessary to providing basic care to patients in their care and to identify any critical gaps in test content.

Over the past several months, a small but mighty group of AAHPM members and palliative medicine subspecialists completed a comprehensive review of the USMLE Step examinations. On June 15-16, 2016, the team traveled to Philadelphia to the office of the National Board of Medical Examiners. Participants included: Bob Arnold, MD FAAHPM, Gary Buckholz, MD FAAHPM HMDC, Elise Carey, MD FAAHPM, Jeff Klick, MD, Laura Morrison, MD FAAHPM, Joe Rotella, MD FAAHPM HMDC MBA, Solomon Liao, MD FAAHPM, and Stacie Levine, MD FAAHPM.

The team made recommendations to enhance testing content to better reflect the basic palliative care skills necessary for all licensed physicians practicing medicine. In addition to the content review of test questions, the review team explored strategies currently being used to assess patient-physician communication skills in the Step 2 Clinical Skills Examination, which are essential to the practice of medicine generally and a core competency of hospice and palliative medicine. The hope is that this initial review will lead to further collaborations with NBME on strategies for assessing communication skills in a test format.