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.

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

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

Education Exchange

Toward Safer Transitions: A Curriculum to Teach and Assess Hospital-to-Hospice Handoffs

Neha J. Darrah and Nina R. O’Connor

Original Articles

Burdensome Physical and Depressive Symptoms Predict Heart Failure-Specific Health Status Over One Year

Hillary D. Lum, Evan P. Carey, Diane Fairclough, Mary E. Plomondon, Evelyn Hutt, John S. Rumsfeld, and David B. Bekelman

A Rasch Analysis of Assessments of Morning and Evening Fatigue in Oncology Patients Using the Lee Fatigue Scale

Anners Lerdal, Anders Kottorp, Caryl Gay, Bradley E. Aouizerat, Kathryn A. Lee, and Christine Miaskowski

Brief Report

Prescription and Deprescription of Medication During the Last 48 Hours of Life: Multicenter Study in 23 Acute Geriatric Wards in Flanders, Belgium

Nele J. Van Den Noortgate, Rebecca Verhofstede, Joachim Cohen, Ruth D. Piers, Luc Deliens, and Tinne Smets

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

Pittsburgh. Mighty. Beautiful.

According to Trip Advisor, there are 162 exciting things to do in Pittsburgh. We know you won’t have time to do them all since learning will be your priority at the AAHPM Summer Institute July 24-27, but we thought you may want to see what the top 10 things are:

  1. PNC Park “Best ballpark in the US.”
  2. Phipps Conservatory “Museum Bucket List.”
  3. Mount Washington “Best view of Pittsburgh.”
  4. Bicycle Heaven “Rare find – loved It!”
  5. Carnegie Museum of Natural History “Kids love the dinosaurs!”
  6. Heinz Field “Iconic and windy (always).”
  7. Duquesne Incline “A must do and get a panorama of the city.”
  8. Senator John Heinz History Center “Awesome exhibits!”
  9. The Strip “Perfect place to shop.”
  10. Consol Energy Center “State of the art hockey venue.”

Consider bringing your family or friends to enjoy this great city. Learn more at www.visitpittsburgh.com or follow @vstpgh on Twitter and Facebook.

AAHPM Represented at NQF Palliative and End-of-Life Care Meeting

The National Quality Forum (NQF) held an in-person meeting in Washington, DC, May 10-11, 2016, to re-evaluate 16 palliative & end-of-life care performance measures. Information about the measures being evaluated, the NQF process, and the NQF Standing Committee roster can be found on the NQF website.  AAHPM leaders Christine Ritchie, Paul Tatum, Gregg VandeKieft, and others were chosen to take part in the NQF Standing Committee.  AAHPM had previously submitted comments for the Standing Committee to consider, and AAHPM staff Katherine Ast, Director of Quality & Research, was on hand at the meeting to deliver additional comments:

“AAHPM and other organizations from the National Coalition of Hospice and Palliative Care are here to express our strong support for the continued endorsement of all the measures brought forward for maintenance in this project.  Please take note of the letter we submitted prior to this meeting which highlights some of the issues our field faces that contribute to our lack of relevant measures, particularly those with a true palliative care denominator. What we want to emphasize today is how critical it is that we keep the endorsement of the measures we do have so they can be used to improve the quality of care for our patients and families and to enable our clinicians to participate in value-based reimbursement.

NQF, CMS and the MAP have indicated though various publications and rule-making that palliative and end-of-life care represents a major gap in quality measurement. NQF & CMS have also called for measures to become more cross-cutting. Our field is very unique since our patients are all seriously ill and death is not always a negative outcome, and can likely be a neutral or positive outcome. We need measures that are flexible, take patient preferences into account, emphasize care coordination, family meetings, goals of care, etc. The approach to measure development for our field cannot be cookie cutter. In order to increase the usability of the measures we have and expand the settings and populations for which they can be implemented, we need to keep working with what we have.

We have so few outcome measures in our field, particularly patient-reported measures and for good reasons. However, we do have NQF #0209 which is able to capture patient self-report of pain. No, it can’t capture every patient so other measures need to be developed. But it does capture patient self-report of patients who can report. NQF staff Karen Johnson asked the question at the beginning of today’s meeting that if we had outcome measures to capture enough aspects of the quality of care for patients with serious illness, would we still need process measures? Unfortunately, we have so few outcome measures, that we couldn’t possibly dispose of our process measures to measure quality. However, we do have this outcome measure and we should keep it. We believe that risk adjustment or risk stratification is not critical for this or any other measures brought forth today, although it is currently being explored for several of the measures. The measures are used for comparison among similar providers and there is no expectation that performance will be 100%.

Benchmarking is a critical component to measuring the quality of care and without measures to report and data to aggregate, we can never get to any benchmarks in our field. There are certain processes that many believe should continue to be measured, even up to a rate of 100%. (For example, not having an ICD deactivated before an expected death most consider a “never event” and yet it still happens.) What does it mean for a measure to be topped out? With such a new field still finding its place in health care and in different settings, we think all the measures are far from being topped out, even if they approach 100% performance. In addition, many measures continue to show a clear opportunity for improvement. Once we expand the measures to be reported in multiple settings and with a true palliative care denominator, then we can start to enable benchmarking and true comparison of providers. We’ll need to keep the endorsement of all the measures presented here today in order to see that goal become a reality.”

Questions? Contact Katherine Ast at kast@aahpm.org.

First Neuro-Palliative Care Workshop in Peru

On May 13-14 2016, the Peruvian Societies of Palliative Care (Sociedad Peruana de Cuidados Paliativos, SPCP) and Neurology (Sociedad Peruana de Neurologia, SPN) held their first two-day conference and workshop on “Palliative Care and Neurology” in Lima, Peru. In a country without a palliative care training program, and where the development of palliative care is limited, 90 Peruvian neurologists, neurointensivists, geriatricians, palliative care specialists, nurses, as well as some patients from the Peruvian national neurological institute (Instituto Nacional de Ciencias Neurologicas, INCN) gathered to learn about palliative care principles and the ethical considerations and challenges of neurological illness and disability. Dr. Claire Creutzfeldt, Assistant Professor of Neurology at the University of Washington, was gave an overview of neuro-palliative care and run a VitalTalk communication workshop, providing a framework for approaching discussions regarding serious illnesses.

Invited political and healthcare leaders included: Pilar Mazzetti Soler, MD PhD, neurologist, former Peruvian Minister of Health and president of the SPN and INCN; Lilian Hidalgo, MD, vice president of the SPCP; Maria Chumbe MD, neurointensivist at the INCN; and Claire Creutzfeldt, MD. These leaders participated in a roundtable discussion entitled “Visions for Neuropalliative Care in Peru” – fielding questions and debating the next steps to facilitate the growth of palliative care. Specific aspirational goals emerging from the conference included: (1) incorporation of palliative care specialists into clinical neurology ward teams; (2) development of home health and hospice programs; and (3) integration of a palliative care curriculum for medical school and residency programs.

The conference was co-organized by NIH Fogarty Global Health Scholar Anastasia Vishnevetsky, MDc from the Perelman School of Medicine at the University of Pennsylvania, and Peruvian Geriatrician Carla Zapata del Mar, MD. The Peruvian Society of Neurology and the Peruvian Society of Palliative Care co-hosted the event. Additional support was provided by the NIH Fogarty Interdisciplinary Cerebrovascular Diseases Training Program in South America (ICTuS) Grant (5D43TW009137, awarded to Drs. Joseph Zunt, Hugo Garcia and David Tirschwell) and the NIH Fogarty Global Health Fellows Program (R25TW009345, awarded to Drs. Joseph Zunt, Chandy John, Joseph Kolars and Vivek Nerurkar).  Special thanks to Drs. Juan Luis Cam, Mario Cornejo-Olivas and Miriam Cuba for their help and support with the conference organization.