This Quarter in Health Reform: Summer 2014 Roundup

By Emily Warner

Greetings, Palliative in Practice readers, and welcome to your September edition of This Quarter in Health Reform. It was a mild summer here in the northeast, perfect weather for throwing another hotdog on the grill and abandoning your commitment to take up beach volleyball.  Seasonal highlights included gubernatorial hopeful Don Berwick’s can’t-fail single payer platform, and Malia Obama’s sweet 16 party at the White House on July 4th, featuring the at once patriotic and precious rapper, Pitbull.

Of course, somewhere in there, CMS found the time to draft up about 100,000 pages of regulations, so let’s get to it, shall we?

  1. BREAKING: The Institute of Medicine, just hours ago, released the report, “Dying in America: Improving Quality and Honoring Individual Preferences at the End of Life.”  The title is lamentable, but the report makes incredibly strong recommendations regarding palliative care: that palliative care should be available to all people with serious illness in all settings, and that all health professionals should have training in basic palliative care skills, including communication and pain and symptom management. Take a few minutes to read the summary recommendations here.
  2. CMS once again ruined some sad 1st year Policy Associate’s weekend getaway plans with its whopping 2,400+ page inpatient prospective payment system final rule. This rule, which was either released on August 1 or August 22, depending on which part of the government you ask, lays out both payment system updates and quality-related updates. Shortest summary ever: readmissions penalties will go up to 3% of payments in FY 2015. Conditions tracked include heart attack, heart failure, pneumonia, chronic obstructive pulmonary disease, and hip/knee arthroplasty; and beginning in FY 2017, coronary artery bypass graft (CABG) surgical procedures.   No palliative care measures are included in the IQRS, though a 3-item care transition set was added.  CAPC continues to work with quality measurement experts to encourage the adoption of measures related to quality of life for people with serious illness.
  3. Next up, hospice policy. A lot happened this summer around hospice and if you subscribe to any of AAHPM’s or NHPCO’s mailings I’m sure you heard about it. First, drugs. This is a bit oversimplified, but in March, CMS issued guidance that required all prescribed medications for hospice patients billed to part D to be rejected for payment pending a coverage determination.  This created heartbreaking access issues for patients, and after the concerted advocacy efforts of the hospice and palliative care communities, CMS backed down from this policy in July. Now prior authorization is only required for four categories of drugs: analgesics, anti-nauseants, laxatives and anti-anxiety drugs.  CMS also ruffled feathers in its proposed Hospice wage index rule in May. The many details of this proposed rule are too lengthy to go into here, but among the issues was a proposed new definition of “terminal illness” that CMS is considering for future rulemaking.  Many stakeholders saw the proposed definition as an attempt to expand the definition of terminal illness, and thus the services that would need to be covered by the hospice per diem, and there was broad resistance to the proposal. In its final rule released in August, CMS acknowledged what it had heard from the field, but reiterated its concern about the unbundling of services under the current definition, so this issue has not been put to rest. You can see the fact sheet on the full final rule here.
  4. On a much clearer note, the Secretary has resigned! Long live the Secretary. Kathleen Sebelius, Warrior Secretary, resigned last spring, and Sylvia Burwell has been confirmed to take her place. Godspeed, Secretary Burwell; it’s only a matter of time before your visage is replaced by photographs like this.
  5. And last but not least, the Patient Quality of Life Coalition (PQLC)—a coalition formed to improve access to palliative care—had a successful lobby day this summer. Individuals from over 20 organizations had 64 meetings to promote awareness of palliative care and of two active pieces of legislation—the Patient Centered Quality Care for Life Act (link is to House bill), and the Palliative Care and Hospice Education and Training Act (again, House bill).  Its efforts resulted in 13 new cosponsors on the bills. Also worthy of note was a PQLC Twitter chat following the lobby day under the PQLC hashtag.  I’m not sure if, technically speaking, Twitter-chatting is a competition, but based on the number of tweets, I’m pretty sure I won. So step aside @ctsinclair and @rfberry, there’s a new tweet-chatter in town.

And this is a health care blog, so honorable mention has to go to—what else— the Apple watch, which marks, with its ability to determine a pulse, one of the greatest leaps forward in medical technology seen in decades. Until now, there was simply no way to know whether an individual’s heart was beating, and if it were, at what rate. This watch, which can determine a pulse at such distal and improbable locations as the wrist, ushers in a new era of symbiosis between the biological and the binary. The singularity is indeed near.

And that’s it for this quarter, folks.  Join us next week for your regularly-scheduled CAPC News Bites.  Until then, at a cool 64 bpm, signing off…

CAPC News Bites

CAPC News Bites, What you need to know this week

(Editor’s note: Health Reform Quarterly will appear in place of CAPC News Bites next week).

CAPC Membership At-a-Glance

CAPC becomes a membership organization in January 2015.  Among the many benefits of membership are Virtual Office Hours for “just in time,” small-group access to field leaders, appropriate whether you’re trying to improve team billing practices or implement palliative care in your ICU.

Member organizations will also gain access to ready-to-use tools and technical assistance for palliative care specialists and teams in all settings; clinical online training pathways for all frontline clinicians that integrate best practices with highly interactive skill-building; operational skill-building for both well-established and new palliative care specialists; free CME/CEUs and much more. If you become a member in 2014, you will save for two years. To learn more and to join, click here.

Deadline Approaching for Early Bird Registration to the CAPC National Seminar

The deadline to save on registration for the CAPC National Seminar is September 22. The seminar will be held  November 13-15 in Orlando, Florida.  Offering in-depth content, rich networking opportunities and one-on-one access to expert faculty, attendees will also learn from real-world examples of development and sustainability.

Participants will also have the opportunity to hear from notable plenary speakers, including Senator William H. Frist, Sister Carol Keehan, DC, RN, MS, Diane E. Meier, MD, Graeme Rocker, MD and David Weissman, MD. For more information and to register, click here.

Next CAPC Web Conference to Focus on Payer-Provider Partnerships

CAPC’s next web conference – Wednesday, September 24 at 1:30 PM ET – that will focus on the successful integration of the Advanced Illness Management Program in the North Shore-LIJ Health System through several different financing models. Participants will learn how North Shore LIJ worked directly with payers to ensure that team-based palliative care in the community was supported and available to those in need. Speaker Kristofer Smith, MD MPP, will discuss the challenges faced and opportunities discovered as he worked to collaborate with several payers to support Advanced Illness Management services to people with complex-care needs.

Click here to register. For a detailed description on the ways in which payers are supporting palliative care for their members with serious illness, download the toolkit, “Improving the Care of Serious Illness through Innovative Payer-Provider Partnerships,” at

CAPC News Bites

CAPC News Bites, What you need to know this week

Annual Palliative Care Survey Summary Results Show Palliative Care Growth

CAPC and the National Palliative Care Research Center (NPCRC) have released the results of the 2012 National Palliative Care Registry Survey, providing key findings on the association between staffing levels and the ability to reach patients in need.  The National Palliative Care Registry™ tracks structures and processes of palliative care teams in U.S. hospitals and acts as the leading resource on the metrics, scope and variation of hospital palliative care programs.

The report findings show the growth of palliative care over the past decade, which types of U.S. healthcare organizations consider palliative care a critical part of their patient services, the increased ability of palliative care to reach patients in need, the relationship of staffing to determining palliative care penetration, and the relationship of staffing to shorter length of stay, among others. Click here to download the summary.

Web Conference: Improving Access to Integrated Palliative Care

The National Institute for Health Care Management (NIHCM) Foundation—a nonprofit, nonpartisan research and educational foundation dedicated to improving the effectiveness, efficiency and quality of the U.S. health care system—is hosting a free web conference on September 10, 2014 at 1:00 pm EDT that will explore ways to improve access to palliative care across the United States. The conference, Improving Access to Integrated Palliative Care, will address the key benefits of team-based care, showcase successful models of how outpatient palliative care has reduced hospitalizations, and introduce a new Medicare pilot that allows patients to access palliative care through hospice while pursuing life-prolonging treatment. A draft agenda can be viewed by clicking here. Registration for this webinar will remain open until 11:00 AM (EDT) on September 10. .

Dates Still Available for Hands-on Palliative Care Training in 2014

Only a few dates remain in 2014 to take advantage of intensive, operational hands-on training and yearlong mentoring offered by Palliative Care Leadership Centers™ (PCLC). These centers, located throughout the United States, offer training  for palliative care programs at every stage of development and growth.  Established by CAPC and the Robert Wood Johnson Foundation, PCLC has trained almost half of the nation’s hospital palliative care programs.

For programs at beginning stages, PCLC training will result in less ramp-up time and a more efficient, cost-effective program. For active programs, the PCLC curriculum will help ensure sustainability and growth. Click here to view the list of available training dates. To enroll, click here.

Follow CAPC

Follow CAPC’s Facebook page and Twitter page for up-to-the-minute news, palliative care research findings, original videos and more! Subscribe to CAPC’s new podcast channel to listen to stories that cover pertinent palliative care issues.

The Palliative Pulse, August 2014

A Retiring Social Worker Reflects on her Palliative Care Journey

Screen Shot 2014-08-27 at 10.36.03 AM

Palliative care social worker Sue Degnan (left) and her successor Jaime Puzelli of Huntington Hospital

In the early 1990s, social worker Sue Degnan knew something was missing from the care her Oncology team was delivering. She watched doctors and nurses come and go from hospital rooms without taking the time to truly communicate with their patients and families, especially those facing serious illness, and thought her staff could be doing more.

“A lot of families were struggling because they didn’t get to sit down and have conversations with their medical professionals. They didn’t know they had choices when it came to their treatment options and I thought that the relationship between patient and clinician was greatly lacking.”

That’s when Sue discovered what palliative care was and how it could fill the gap by adding an extra layer of support for patients and families as they navigated through uncertain waters.  At the time, less than 5% of all hospitals in the United States were offering palliative care services, but that didn’t deter Sue and a few of her colleagues at Huntington Hospital in New York from taking action.

“After discovering that not only does it help patients facing serious illness immensely but that there’s a strong business case for the hospital as well, I knew it was something we had to push for. From that moment on, we began a grassroots movement to offer this kind of care as much as possible.”

That movement has turned into a successful palliative care program at Huntington which now features a full interdisciplinary team of trained palliative care specialists who see an average of 95 palliative care consults a month. The team’s development is a reflection of the growth of palliative care in the United States as well. At present, 61 percent of all hospitals with 50 beds or more offer palliative care programs; a far cry from the days where Sue began her uphill climb to help implement a palliative care program at her hospital.

Now, as Sue enters retirement after an accomplished 52-year career, she is able to reflect on what her team has accomplished.

“That I’d be able to retire and see something come to life that I always had a passion for is a wonderful thing. There’s not a lot of people that can say that they did what they set out to do and have no regrets about how they got there.”

Listen to this CAPC Podcast with Sue Degnan as she discusses what it takes to succeed in the role of the palliative care social worker and how she believes that her successor is the right person to continue her legacy.


 10 Reasons to Become a CAPC Member Organization

CAPC is becoming a membership organization in 2015. The value of membership is a strong partnership between your organization and CAPC. Among the many benefits of membership, you and your organization will be able to take advantage of:

  1. Virtual Office Hours for “just in time,” small-group access to field leaders, whether you’re trying to improve team billing practices or implement palliative care in your ICU
  2. Ready-to-use tools and technical assistance for palliative care specialists and teams in all settings
  3. Clinical online training pathways for all frontline clinicians that integrate best practices with highly interactive skill-building. Generalist clinicians can receive CAPC Designation. Training is linked to CME/CEUs
  4. Operational skill-building for both well-established and new palliative care specialists. Training is linked to CME/CEUs
  5. Leadership support that focuses on a rapidly changing environment, including leveraging resources to increase efficiency, metrics needed to ensure impact and seamless adoption of best practices from other programs.
  6. Comparative data and reporting through the nation’s only repository of data on palliative care team characteristics and best practices – the National Palliative Care Registry™
  7. Convening opportunities, such as Special Interest Groups that let you collaborate with colleagues who share your interests and challenges
  8. Access to all CAPC web conferences
  9. Deep discounts for the Journal of Palliative Medicine and the CAPC Seminar
  10. If you join in 2014, you will save for two years!

To learn more and to join, click here.

My Palliative Care Moment

Sharing the inspiring stories of why specialists choose palliative care as a career

This month, watch Jay Horton, Director of Palliative Care Consult Service at the Icahn School of Medicine at Mt. Sinai Hospital, discuss why he chose palliative care as a career.

Do you or your patients have a palliative care moment to share? Contact Dan Altano at

Follow CAPC

Follow our Facebook page and Twitter page for up to the minute news, videos, podcasts and more!

CAPC News Bites

CAPC News Bites, What you need to know this week

Palliative care can help those facing serious illness

The Journal Times out of Racine County (which stretches across Chicago and Milwaukee) is spreading the word about palliative care by pointing readers in the direction of evidence that shows how palliative care can help patients and families facing serious illness.

In a recent article, Dr. Anthony Komaroff, a physician and professor at Harvard Medical School, answered a reader’s question about available resources for people dealing with advanced cancer, by explaining how palliative care can help. In her response, Dr. Komaroff highlighted a recent study conducted by Harvard-affiliated researchers that surveyed almost 400 men and women with advanced cancer.

“The study found that human connection, rather than heroic life-saving efforts, mattered most to patients and their families,” said Dr. Komaroff. “(Patients) want to make the decision about what to do, based on their assessment of their situation and their values. They often discuss this with the family and friends they trust before making their decision,” she added.

To read the full story, click here. Watch this video that shows how palliative care empowers patients to make decisions that matter to them.

Proposed Requirements for Advanced Palliative Care Certification Program: Submit Input by TOMORROW

The Joint Commission is proposing changes to the Advanced Palliative Care Certification Program requirements and is seeking input from the field. Palliative care providers are encouraged to review and comment on these standards by Thursday, August 21.

The Joint Commission has identified areas for enhancement in the requirements, which include: increased focus on care of patient and family; referrals to community resources and hospice providers; assessments by members of the interdisciplinary program team; palliative care for pediatric patients and families; as well as orientation and education for interdisciplinary program team members.  Of note, however, is that the revisions would not require a physician to be included as a member of the “core interdisciplinary program team.  The Joint Commission welcomes input on this and all other requirements via a short online survey.

Webinar Tomorrow: Palliative Care & Depression—Clinical Challenges

Being able to recognize the signs and assess the symptoms of depression is crucial to palliative care providers. To explain how mental health providers can help with palliative care by being able to appropriately recognize, assess, and provide intervention to patients with depression, the Coalition for Compassionate Care of California (CCCC) is holding a web conference Thursday, August 21, at 1:00 p.m. PST.

The web conference will feature speaker Scott A. Irwin, PhD, Directory of Psychiatry and Psychosocial Services at UC San Diego Moores Cancer Center. Click here for more information and to register now.

Cambia Health Foundation to hold Sojourns Awards and Summit October 2

Cambia Health Foundation is holding a luncehon to honor the Foundation’s inaugural national cohort of Sojourns Scholar Leadership award recipients on Thursday, October 2, 2014, at the Sentinel Hotel in Portland, Oregon.

The Sojourns Scholar Leadership Program is a new initiative designed to identify, cultivate and advance the next generation of palliative care leaders. Anthony Back, M.D., Associate Professor of Medicine at the University of Washington, will deliver the keynote address. Following the complimentary awards luncheon, Cambia Health Foundation will also be holding a summit featuring regional and national palliative care leaders. To learn more about both events and to join, click here.

‘Lessons Learned’ from Electronic Palliative Care Coordination System Implementation

NHS Improving Quality (NHS IQ)—a group dedicated to the improvement of care across England—has produced a resource to support organizations planning implementation of an Electronic Palliative Care Coordination System (EPaCCS). The system records and communicates key information about the wishes and preferences of those facing serious illness.

The new resource, ‘Lessons Learned’, provides useful tips and information which has been collated from working with sites who are currently implementing an EPaCCS system. To download ‘Lessons Learned’ or to find out more, click here.

Follow CAPC

Follow our Facebook page and Twitter page for up to the minute news, videos, podcasts and more!

CAPC News Bites

CAPC News Bites, What you need to know this week

Early Palliative Care Can Lessen Hospital Stays, Improve Well-Being

A study conducted by researchers a the University of Texas MD Anderson Cancer Center has found that early referrals to palliative care lead to fewer hospitalizations, ER visits, intensive-care admissions and hospital deaths.

“Earlier palliative care is generally a good thing. There is more and more evidence to support the need for it, and the benefits that come from it,” says David Hui, M.D., an oncologist at MD Anderson.

To read a detailed synopsis of the study published on—a site produced through the Mesothelioma Center—click here.

A Network for Courageous Parents Offers New Views on Palliative Care

A new site, conceptualized by television producer Blyth Lord, is sharing compelling videos that feature parents of seriously-ill children discussing their trying experiences. Launched in April 2014, the Courageous Parents Network aims to be a video-centric resource for any parent facing this kind of situation.

In the videos, parents talk about a host of topics including their fears and anxieties, and in several cases, detail their decisions to choose palliative care for their children. The video series also features the points-of-view of physicians, therapists and chaplains, among others. To view the site, click here.

Baylor Medical Center Wants To Spread The Word About Palliative Care

An article in HealthCare Daily has put the spotlight on Baylor Healthcare System’s Supportive and Palliative Care program, which was recently awarded the American Hospital Association’s Circle of Life Award as one of the nation’s three best palliative care programs. The story details their growth from a program that saw an average of 450 patients a year between 2004 and 2010 to a program that now treats over 4,200 patients annually. To read the full story, which also focuses on the need for more palliative care training nationally and underlines important research supporting palliative care, click here.

Follow CAPC

Follow our Facebook page and Twitter page for up to the minute news, videos, podcasts and more!

CAPC News Bites

CAPC News Bites, What you need to know this week

Disparities in Access To Palliative Care

Otis Brawley and Cardinale Smith say that racial and ethnic disparities in health care in regards to access to care, receipt of care, and quality of care lead to more minority patients being diagnosed with late-stage illness and experiencing increased suffering as a result. This detailed argument can be found this month in Health Affairs, which has been publishing a blog series dedicated to bringing pressing palliative care issues to light.

In the article, Brawley and Smith lay out actionable next steps in bringing these issues to light and addressing the problem. They say change must come soon.

“As the population of minority older adults continues to rapidly increase, many will have to deal with the challenges of serious illness. Ensuring the availability of high quality palliative care that can meet the needs of this population is paramount,” they write. To read the full story, click here.

New APHA Policy: Supporting Public Health’s Role in Addressing Unmet Needs in Serious Illness

The Aging and Public Health Section of the American Public Health Association (APHA) has released a proposed policy, “Supporting Public Health’s Role in Addressing Unmet Needs in Serious Illness and at the End of Life.” This policy addresses the public health problem of the growing suffering and illness burden among older adults and seriously ill individuals who are faced with advanced life-limiting conditions as they age. The contents set the stage for public health’s involvement in supporting appropriate health care delivery for this growing population.

Action Steps are provided for organizations, government, and policy makers. Detailed information about the policy can found by clicking here.

Mindfulness, Listening and Communication: Training for Providers Caring for the Seriously Ill

image001 (2)

Between Friday, October 17 and Saturday, October 18, the NYU Langone Medical Center—a world-class, patient-centered, integrated, academic medical center—is offering training to doctors, care givers and anyone actively involved or concerned with palliative care and decision-making.

This course will teach mindfulness-based palliative care/communication skills to caregivers involved in caring for patients facing serious illness as well as their loved ones. Participants will explore how aspects of the practice of mindfulness can help to develop deep communication skills. To learn more about accreditation, get to know the speakers and see the full list of events, read the course brochure.

Follow CAPC

Follow our Facebook page and Twitter page for up-to-the-minute news, videos, podcasts and more!

CAPC News Bites

CAPC News Bites, What you need to know this week

Medicare Experiment Could Signal Sea Change For Hospice

Diane E. Meier, Director of CAPC, recently sat down with Kaiser Health News’ Michelle Andrews to discuss the recently launched pilot initiative that allows willing hospice patients to continue to receive life-prolonging treatment. Dr. Meier also discussed the differences between hospice and palliative care and weighed in on what the future holds for this medical specialty. Click here to read the full story.

CCCC launches national consulting service for Advance Care Planning

The Coalition for Compassionate Care of California (CCCC) has launched a nationwide Advance Care Planning Consulting Service for healthcare providers. The service works with healthcare organizations to design effective, cost-efficient customized Advance Care Planning solutions that result in a quality experience for both patients and healthcare teams. Topics include: program planning and design, customized materials for patients and providers, training and education, and metrics support. Click here to learn more.

Proposed Requirements for Advanced Palliative Care Certification Program

The Joint Commission is proposing changes to the Advanced Palliative Care Certification Program requirements and is seeking input from the field. The Joint Commission staff  has identified areas for enhancement in the requirements, which include: increased focus on care of patient and family; referrals to community resources and hospice providers; assessments by members of the interdisciplinary program team; palliative care for pediatric patients and families; as well as orientation and education for interdisciplinary program team members.  Submit your comments via the online survey, which will take approximately 10-15 minutes to complete.

Click below to listen to a podcast on how The Joint Commission Certification Process works.


Insurers play growing role in palliative care expansion

Health plans covering palliative care are on the rise, according to an article in The Oncology Report. As evidence, the story spotlights Cambia Health Solutions’ recent launch of a wide-reaching palliative care program. In addition to covering palliative care services not previously covered, Cambia is offering training to palliative care specialists as well as primary care physicians on topics such as effective communication skills and making referrals. To read the full story, click here.

Follow CAPC

Follow our Facebook page and Twitter page for up to the minute news, videos, podcasts and more!


CAPC News Bites

CAPC News Bites, What you need to know this week

Study: Early Palliative Care Cuts Costs

A new study in Health Services Research finds that palliative care delivered early during hospitalization can help minimize costs for those facing serious illness. The study aimed to guide hospital systems on how best to structure and utilize palliative care teams as well as measure potential cost savings from in-hospital palliative care teams.

The results show that “savings associated with palliative care were highest for patients who had a consult with a palliative care team within the first 10 days of their hospital stay and for patients diagnosed with cancer.” Savings also increased when “a palliative care team included more involvement of physicians and registered nurses.” Click here to read the full study.

AAHPM Launches Survey to Help Shape List of Cross-Cutting Quality Measures for Hospice and Palliative Care

Last fall, the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA) launched Measuring What Matters (MWM), a consensus project aimed at identifying a recommended portfolio of cross-cutting performance measures for all hospice and palliative care programs. AAHPM is now inviting input from stakeholder organizations, including patient advocacy organizations, in an effort to finalize this list of measures.

The current list has been narrowed to 12 published, existing quality metrics. Organizations are now invited to help determine the final list of measures that will be recommended for palliative care programs to use for program improvement. The deadline to complete the survey is August 4, 2014. Click here to access the survey.

This Week in Palliative Care Tweets

Check out what is trending on Twitter this week in the world of palliative care…

Did you see the Palliative Pulse?

The July issue of The Palliative Pulse features a heartwarming story on palliative care patient and advocate, Amy Berman’s palliative care journey; a guest blog by Dr. Sarah Friebert, Director of Akron Children’s Hospital’s Haslinger Family Pediatric Palliative Care Center; and much more. Click here to catch all the stories and don’t forget to subscribe to Palliative in Practice for all your palliative care news, stories and issues.

The Palliative Pulse, July 2014

Palliative Care: We are the Quarterbacks of our Care

Waving from the saddle of a camel. Jet skiing to the Statue of Liberty. Climbing the Great Wall of China.

This is what you’ll find Amy Berman—who was diagnosed with stage IV inflammatory breast cancer in October, 2010—doing these days. Since choosing palliative care and remaining in control of her own medical decisions, Amy says she is enjoying a “full life” of work, travel and quality time with loved ones.

“I did something so simple yet so rarely done. I chose the road less taken, and it led to better health, better care, and significantly lower cost,” said Amy in a recent Health Affairs blog post. Amy is a Senior Program Officer at the John J. Hartford Foundation, a proud mother and a staunch advocate of how palliative care can benefit anyone facing serious illness as well as their families.

This month, CAPC presents Amy’s story, in her own words and images, as a reminder of how palliative care empowers patients and families to match their goals with the care they receive.


Keeping Perspective and Moving Forward

By Sarah Friebert, MD


My Journey to and in palliative care has been a series of steps both small and large (and forward and back), u-turns, roads taken and not, sprints, detours and a voice announcing “recalculating,” but through it all has been a sense of being led into this work in the first place and deeper in as time has gone on.

Over time, it’s easy to lose perspective on how important the work is, because it becomes what we do every day. Every once in a while though, something happens that makes me say, “THIS is why we do what we do.” Sometimes it’s a family’s spoken and unspoken relief at realizing they’re not alone. Sometimes it’s a measurable change in a child’s distressing symptoms because of an intervention we’ve implemented.

Recently, reward has come in the form of breaking through the myths and misconceptions surrounding palliative care and hearing families say, “When I first heard about palliative care, I thought: not for my child, but now I wish I had known about your team long ago.”

Persistence, education and presence are paying off, and if we keep going, access to high-quality palliative care will eventually be the norm for every child and family who could benefit from what we have to offer.

Dr. Friebert is the Director of Akron Children’s Hospital’s Haslinger Family Pediatric Palliative Care Center. Her program was recently featured in an article on pediatric palliative care published in The New Yorker.


 CAPC Membership: Institutions will never have to reinvent the wheel 


CAPC becomes a membership organization in January 2015. With membership, institutions will become part of a vibrant collaborative network of healthcare professionals at the front lines of improving care for the sickest and most complex patients.

One membership fee will cover the cost of training, tools and expert resources for the entire staff of each member institution. Member-only benefits include: clinical and operational CME/CEU online training through multiple platforms; hands-on technical assistance focused on essential best practices and ready-to-use tools and resources; leadership skill-building to increase operational efficiency and effectiveness; virtual office hours with nationally recognized palliative care leaders from all settings; access to CAPC web conferences covering the most important topics in palliative care; discounts to the CAPC National Seminar; and more. For more information, visit or contact CAPC directly to speak to a membership representative today.

Watch a video featuring nationally-recognized experts discussing CAPC’s tradition of excellence.


My Palliative Care Moment

Sharing the inspiring stories of why specialists choose palliative care as a career

This month’s moment comes from Dr. Stephen Berns, Asst. Professor of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai Hospital. Watch Dr. Berns tell a personal story of when palliative care could have helped his loved ones during a difficult time.

 Want to contribute a story to the Palliative Pulse? Contact



Get every new post delivered to your Inbox.

Join 9,514 other followers

%d bloggers like this: