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by Stacie Sinclair

(Register for the free webinar here)

There is no disputing that recent events mean a huge shift in the direction of health care in the coming years. Although we’re learning more each day about what programs will stay and what will go, there remains tremendous uncertainty that only time will clarify. Yet in this period of transition, there is at least one major program that the nation’s best health policy minds agree is here to stay: MACRA’s QPP!

WHAT DO THOSE CRAZY ACRONYMS MEAN?
The Medicare Access and Children’s Health Insurance Program (CHIP) Reauthorization Act of 2015 (MACRA) is a bipartisan law that repealed the Sustainable Growth Rate and established a brand-new Quality Payment Program (QPP). The QPP, which goes into effect on January 1, 2017, will accelerate the movement towards payment for value by creating two new clinician payment tracks: the Merit-based Incentive Payment System (MIPS) and Advanced Alternative Payment Models (Advanced APMs). In the early years of these programs, clinicians participating in MIPS will see positive or negative adjustments to their Medicare Part B billing depending on their “performance”, while clinicians participating in qualifying Advanced APMs will receive a 5% bonus on top of their Part B billing. Ultimately, the track clinicians participate in will depend on many factors, the most important being the amount of RISK their practice accepts.

AND WHY DOES THIS MATTER FOR PALLIATIVE CARE?
First – this is how clinicians will be paid! In years 1 and 2, eligible clinicians (ECs) include physicians, physician assistants, nurse practitioners, clinician nurse specialists, and certified registered nurse anesthetists who bill Medicare Part B for more than $30,000 and see more than 100 Medicare patients annually. And while the implications will vary based on practice size, work environment, participation in an ACO or other APM, etc., the more proactive you are, the more likely you are to be successful!

Second – the emphasis on performance and APMs represents a HUGE opportunity for palliative care. Palliative care is vital to value-based care, as it demonstrably improves quality of care and quality of life for seriously ill patients, and in so doing, helps the health care system avoid unnecessary utilization and spending. At its most basic level, the transition to value means that hospitals and health systems are increasingly on the hook for cost and quality outcomes. So whether you’re an independent program looking to partner, or a team within a large system that deserves more attention, rapid QPP implementation means that there are going to be more leaders looking for “solutions” that we know palliative care can provide!

SO WHAT DO I DO NOW?
Clocking in at over 2,000 pages, there is no question that the final regulations for the QPP are complicated and confusing. But help is on the way! On November 29, 2016, the National Coalition for Hospice and Palliative Care (NCHPC) is sponsoring a FREE WEBINAR to describe provisions of the final rule and next steps (click this link to register). Experts from the Center to Advance Palliative Care (CAPC), the American Academy of Hospice and Palliative Medicine (AAHPM), the Hospice and Palliative Nurses Associations (HPNA), and the HealthCare Chaplaincy Network (HCCN) will be on hand to clarify who will be most affected and activities that palliative care clinicians should be doing right now.

Again, you can register for the webinar by going to this link. And feel free to send me any questions you have in advance – Stacie.Sinclair@mssm.edu!


JUST CAN’T WAIT UNTIL NOVEMBER 29 TO LEARN MORE?
The Centers for Medicare and Medicaid Services (CMS) has developed a fantastic QPP website that walks users step-by-step through the various components of the MIPS and Advanced APM tracks. It includes interactive tools, fact sheets, and other resources, and CMS is providing regular updates as new information becomes available. And if you need just a little more palliative care flavor in your research, be sure to check out the last NCHPC webinar that our all-star team held in early June, describing the basics of the proposed rule.

We look forward to seeing you on November 29!

Stacie Sinclair, MPP, LSWA is the Policy Manager at the Center to Advance Palliative Care (CAPC). If you enjoyed this post, be sure to check out other scintillating takes on health policy and palliative care from the CAPC staff at https://palliativeinpractice.org/health-reform-quarterly/.

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By Amy Velasquez

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

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

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

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

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By Laura Patel

I was fortunate to attend the 2016 CAPC conference in Orlando. Below are some of the most notable pearls I will be taking home with me.

1. Palliative care is about the relief of suffering. This requires a multifaceted approach and is something that case management based or disease management based programs do not address.

2. Palliative care clinicians are uniquely situated to comment on and participate in healthcare transformation. We need to be advocates and “rabble rousers” (per Dr. Martha Twaddle) to encourage our healthcare system to embrace a focus on prevention and well-being, not only on disease.

3. Dr. Diane Meier stated that we need to start looking at the patient as the “sun”, not the healthcare system; and that we as healthcare providers and systems of care need to orbit around our patients to truly deliver person-centered care.

4. Dr. Martha Twaddle noted, in the US we don’t spend more on healthcare but rather on the healthcare industry (hospitals, big pharma, and administration of healthcare). The healthcare industry is likened to a cruise ship that just keeps getting bigger and bigger, while our health outcomes are not improving at the same rate.

5. Social determinants of health (e.g. ability to meet daily needs of healthy food, safe environment; access to health care and education; access to economic opportunities) are incredibly influential on the health of a community. We cannot ignore these issues in palliative care. We need to be part of the broader conversation to improve overall access to care, resources and opportunity for everyone in this country. These issues impact our patients’ and caregivers’ ability to achieve wellness and healing. 6. Community-based palliative care is where the focus needs to be in the next 10 years.

7. Payment for community-based palliative care is difficult, but there are many creative ways to explore these issues, including partnering with ACOs, developing payer contracts with Medicare Advantage plans, grants, philanthropy, etc.

8. Telehealth is now entering the mainstream. The definition of telehealth is wide and includes synchronous (e.g. videoconferencing) and asynchronous (e.g. text, portals, apps) methods. These can be helpful to improve access to care and experience of care.

9. Every program needs to be measuring something, and many programs find this challenging with barriers of complex EMRs, lack of time and resources. Start small, but START. Piloting can be helpful to show the impact of programs to potential payer sources.

10. It’s important to remember that everyone has a story, including hospital administrators, insurance CEOs, and CMS administrators (by the way, the speech by the Center for Medicare Services Chief Medical Office, Dr. Patrick Conway gave me a renewed sense of hope). We saw this at CAPC as leaders in different sectors of healthcare shared their personal stories of loss of a loved one or a dear patient, and how this has impacted their outlook on hospice and palliative care. We all have a stake in good care for the seriously ill. It could be our mother next…It could be us. Tell the story, focus on the impact on the patient and family. People will connect with these stories in a personal way. This will help drive access to the type of care we know will make a difference for people with serious illness.

Bonus Take Home: We in the hospice and palliative care world need to lead the charge in shifting from the “Triple Aim” (improving the health of population, improving patient experience and outcomes and reducing cost of care) to the “Quadruple Aim” which includes an acknowledgement that the care of the patient also requires the care and satisfaction of the clinicians tending to these patients. In fact, our very ability to achieve the triple aim is threatened by high rates of burnout in our physicians and other healthcare providers. Recognition of burnout and self-care are integral components of effective palliative care, and we can be part of the broader conversation to improve the “health” in our healthcare system for ourselves and our patients.

You can find more from the conference on Twitter under the hashtag #CAPCSeminar16.

Laura Patel, MD is the Chief Medical Officer at Transitions LifeCare in Raleigh, NC.

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by Christian Sinclair

Tonight at the Democratic Town Hall, a New Hampshire voter, Mr Jim Kinhan asked a very important question of candidate Senator Hillary Clinton about care at the end-of-life and personal choices. While his question may not have been direct, gauging from Mr. Kinhan’s recent editorial in the Concord Monitor, it appears the focus of the question was intended to be about the challenging debate on physician assisted death. (Full Transcript here - Key Portion excerpted at the end of this post)

.@HillaryClinton: "We need to have a conversation” about end-of-life choices https://t.co/cn6FMOcwSz #DemTownHall https://t.co/ra6VieraLt

— CNN (@CNN) February 4, 2016

This can clearly be a vexing question for any presidential candidate in either party. So I’m here to offer my guidance and expertise on how to best answer this question that will actually do the greatest good for the greatest number of people.

Let’s look again at key points in Mr. Kinhan’s question to make sure we are addressing his concerns:

• He accepts that his prognosis is limited, but notes that he is still active and functional.
• He is open about his spiritual needs.
• He is looking for leadership to advance the public discussion around personal health care choices.
• He voices concerns not only for the patient but also the caregiver.
• He wants life to be enhanced but also the end-of-life to have dignity.

So Democratic and Republican presidential candidates, here is how you can answer this question:


===BEGIN===

Thank you for sharing your personal story Mr. Kinhan. To see that a serious illness won’t prevent you from advocating for important issues is inspiring to me and I’m sure this whole auditorium.¹[Applause]. You mentioned personal choices and dignity for those with advanced illness and a possible poor prognosis. Our health care system is designed to use the most advanced diagnostic tools and cutting-edge therapies. And while these can be very expensive even putting people into medical bankruptcy, we often fall short on providing the things that matter most to patients and their families.

One growing new area in healthcare finding ways to bring value and quality (and without staggering cost increases) is palliative care. You may not know very much about palliative care, but when Americans find out about it, over 90% want palliative care.²

A doctor, nurse, social worker, and as you mentioned spirituality³, a chaplain, and others are on your side; spending time with you; skilled in communicating tough issues; relieving your symptoms and helping support you and your family. But right now we only have 1 palliative care doctor for every 1,200 people with a serious illness. And we need more social workers, nurses, chaplains and others trained in this skilled care. In my presidency, I will work to increase training and research into making palliative care more accessible for all patients facing serious illness.

In addition, I will re-examine the limitations of the hospice benefit, which presents a tough choice about focusing on comfort only. What if you could have the dignity and support hospice brings without having to make one of the toughest decisions to forego potentially life-prolonging therapy?

And if we do those two things well, then we can really help the family caregivers who provide $470 billion worth of care. All of it unpaid. [Applause] We can give them back some of the dignity that illnesses like cancer and heart failure and Alzheimer’s rob from all of us.⁴

And as for the growing national debate on physician assisted suicide or as some call it aid-in-dying, states are grappling with this very issue, which highlights the importance of states rights to settle these difficult social questions.⁵ While I recognize there are surveys showing a majority of American’s support the ability to end their own life when facing a terminal illness, it is important to be cautious in opening new rights so we may protect those most vulnerable to abuse by those same rights.

While physician assisted dying laws are used by far less than 1% of people dying in states where it is legal, my job as president is to do the most good for the most people. That is why - to help 100% of people facing serious illness - I would want to fund more research and training into palliative care, re-examine the limitations on the hospice benefit, and figure out how we can better support family caregivers and patients so they have dignity throughout their illness and not just at the very end.

===END===

So there you go politicians. I tried to answer in a way that may fit your style and needs and still gets to the important issues. If you have a particular area you want to emphasize more with your base, I'm always available to talk to people about palliative care. Or I can direct you to many smart people who can do the same!

PS Politicians and advocates of palliative care also should support the Palliative Care and Hospice Education and Training Act (PCHETA) and check out the advocacy pages for the Center to Advance Palliative Care (CAPC) and the Hospice Action Network (HAN).

PPS More interesting background on Mr. Kinhan - "I'm not living with cancer, I'm walking with cancer." Concord Monitor video featuring Mr. Kinhan.

Christian Sinclair, MD, FAAHPM, is a palliative care doctor at the University of Kansas Medical Center, who was a committee member on the 2014 Institute of Medicine report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. He is also president-elect for the American Academy of Hospice and Palliative Medicine. He has no professional or private stance on physician assisted death. This piece is not representative of any of the above organizations and is his personal opinion.

1 - Let's make sure you are being human AND presidential. Empathize! And go for applause lines.
2 - Say it three times and make it stick!
3 - Callback to the original question. Show you're listening and this isn't a canned response.
4 - Everyone knows someone who has been an unpaid family caregiver. It's tough.
5 - Tried to do my best impression of a politician waffling here. 

Excerpt of CNN transcript: 

COOPER: I want you to meet Mr. Jim Kinhan (ph). He's a Democrat who says he is supporting you.

JIM KINHAN: Hello, Madam Secretary.

CLINTON: Thank you.

KINHAN: I'm very pleased to see you. This may come a little bit from right field, this may seem, but it's very personal to me and resonates probably with many other people who are elderly dealing with health issues. The question is coming to me as a person who is walking with colon cancer. And I'm walking with colon cancer with the word terminal very much in my vocabulary, comfortably and spiritually. But I wonder what leadership you could offer within an executive role that might help advance the respectful conversation that is needed around this personal choice that people may make, as we age and deal with health issues or be the caregivers of those people, to help enhance and -- their end of life with dignity.

CLINTON: Well, first of all, thank you for being here. Thank you so much for being part of this great New Hampshire primary process and thank you for support. And I really appreciate your asking the question. And I have to tell you, this is the first time I've been asked that question.

KINHAN: I -- I figured that.

CLINTON: Yes. I -- I really -- I really...

KINHAN: Maybe any candidate.

CLINTON: And I thank you for it, because we need to have a conversation in our country. There are states, as you know...

KINHAN: Yes.

CLINTON: -- that are moving to open up the opportunity without criminal liability for people to make this decision, in consultation by their families, even, in some cases, with medical professionals. But the issue is whether the medical professionals want to be involved or just be counselors. So it is a crucial issue that people deserve to understand from their own ethical, religious, faith-based perspective. So here's how I think about it. I want -- I want, as president, to try to catalyze that debate because I -- I believe you're right, this is going to become an issue more and more...

KINHAN: Exactly.

CLINTON: -- often. We are, on the good side, having many people live longer, but often, then, with very serious illnesses that they can be sustained on, but at some point, don't want to continue with the challenges that poses. So I don't have any easy or glib answer for you. I think I would want to really immerse myself in the -- the -- the ethical writings, the health writings, the scientific writings, the religious writings. I know some other countries, the Netherlands and others, have a quite open approach. I'd like to know what their experience has been. Because we -- we have to be sure that nobody is coerced, nobody is under duress. And that is a difficult line to draw. So I thank you -- I thank you so much for raising this really important absolutely critical question that we're all going to have to do some thinking about.

KINHAN: Thank you (INAUDIBLE).

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by Christian Sinclair

2015 was a pretty exciting year in palliative care, but 2016 has a lot happening as well. Here are some of the things to put on your calendar right now, so you do not miss them!

To access these dates via Google Calendar (HTML), click here.
To import a .ics file of all current dates to your calendar software, click here.

Spring

• National POLST Paradigm Conference - February 3-5 - Chicago, IL
• Cambia Sojourns Scholars applications due - February 26
• HPM Board Certification Registration - March 1-May 16
• SWHPN General Assembly - March 6-8, 2016 - Chicago, IL
• AAHPM/HPNA Annual Assembly - March 9-12 - Chicago, IL
• Pallimed/GeriPal 10th Annual Gathering - March 10, Location TBD in Chicago, IL
• Caring for the Human Spirit Conference (HealthCare Chaplaincy Network) - April 11-13 - San Diego, CA
• National HealthCare Decisions Day - April 16 - Nationwide
• NHPCO 31st Management and Leadership Conference - April 19-23 - National Harbor, MD
• HMDCB Application Deadline - April 25
• Beginning of the HMDCB Certifcation testing window - May 19 - June 6

Summer

• Canadian Hospice Palliative Care Conference - June 3-5 - Banff, AB, Canada
• New Hospice and Palliative Medicine Fellows begin! - July 1
• #hpm chat 6th Anniversary - July 14
• Hospice Action Network Advocacy Intensive - July 18-19 - Washington, DC
• AAHPM Summer Institute - July 24-27 - Pittsburgh, PA
• NHCPO/AAHPM/HPNA Virtual Conference - August 9-11 - Online

Fall

• Palliative Care in Oncology Symposium - September 9-10 - San Francisco, CA
• 21st International Congress on Palliative Care - October 18-21 - Montreal, QC, Canada
• CAPC National Seminar - October 26-29 - Orlando, FL
• NHPCO 17th Clinical Team Conference and Pediatric Intensive - October 31-November 4 - Hollywood, FL
• HPM Board Exam - November 7, 2016
• NHPCO releases Annual Facts and Figures

Recurring

• #hpm chat (Twitter) - Wednesday nights 9p ET

If you know of any other major events, please add them in the comments below and we may add them to this growing list.

If you would like to help maintain this list and the Google Calendar, it is pretty easy, and can be taught in less than 30 minutes, please email editor - at- pallimed.org.

If you are interested in writing up a report for a major conference listed above, we are always looking for traveling correspondents. Please read this overview of writing conference reports and submit the form on that page.

If you are interested in educational events in Asian countries, please see this Google Calendar maintained by APHN.

Christian Sinclair, MD, FAAHPM is the editor of Pallimed, and always loves a good conference. 

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by Jessica Heintz

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

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

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

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


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

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

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

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

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

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

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

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by Judy Thomas

It has been more than a year since The National Academies of Science, Engineering and Medicine (formerly known as The Institute of Medicine, or The IOM) released Dying in America: Improving Quality and Honoring Individual Preferences Near the End-of-Life.

Since then the report has become a guiding star in the palliative care community and was cited in nearly all articles related to the end-of-life—from professional journals to the New York Times.

Dying in America told us where we were strong and where there was room for improvement. Palliative care bloggers everywhere gushed with enthusiasm.

Late last month the Center to Advance Palliative Care (CAPC) released a state-by-state report card rating access to inpatient palliative care services. Then just a few weeks ago the Coalition for Compassionate Care of California and the California HealthCare Foundation released Dying in California: A Status Report on End-of-Life Care, a report benchmarking the state’s progress against the recommendations laid out in the Dying in America report.

All of this reporting got me thinking…

How do you feel about the current state of palliative care? What does palliative care look like in your area of the country? I want to know.

Join me for a tweet chat on Wed., Nov. 4, where we will reflect on the recommendations made in Dying in America and celebrate the progress of palliative care programs throughout the country.

Topic 1: How has Dying in America shaped the palliative care movement over the last year?

Topic 2: How have you used the Dying in America report (e.g., to make a business case for palliative care, communicate with the media, reference in a proposal)?

Topic 3: If you had a magic wand, what is the one thing you would want changed in The Institute of Medicine’s recommendations?

Topic 4: What would you like to see happen in 2016 that would further The Institute of Medicine’s recommendations?

Extra credit: If you haven’t read the Dying in America report, read the brief and download the key findings and recommendations.

Judy Thomas, JD, is CEO of the Coalition for Compassionate Care of California (CCCC), a statewide collaborative promoting high-quality, compassionate care for all Californians who are seriously ill or approaching the end of life. Through advocacy, education, and resource development, CCCC is working to ensure that organizations and communities have the information, knowledge and tools to create the future of palliative care. Follow CCCC on Twitter at @CoalitionCCC.

What: #hpm chat on Twitter
When: Wednesday, November 4, 2015 – 9 p.m. ET/6 p.m. PT
Host: Judy Thomas, JD (@JudyThomasJD)

Follow @hpmchat on Twitter for all the latest on #hpm chats. If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter.

If you do have a Twitter account, we recommend using tweetchat.com, for ease of following. You can access the transcripts and analytics of #hpm chats through @Symplur.

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

Plenary Sessions

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

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

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

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

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

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

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

Conclusion

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

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

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

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

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

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

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Today, the Institute of Medicine released a new report called "Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life." I had the pleasure of serving on the committee for the past 18 months*, which makes me so excited to finally share this report publicly. I hope you will all join the wider health care community in dissecting, analyzing, and disseminating this report.  Without your involvement from this point forward, this will merely be an impotent academic exercise.

Nothing in this report should be shockingly new to anyone in hospice and palliative care (HPC), but you now have this a tool to construct an exciting future where more people get excellent whole person care. All the organizations we work with (especially those outside of HPC and outside of health care) need to understand the recommendations and work to try an implement them locally and systematically. We are a large voice, but we are barely speaking as one.  NHPCO via Hospice Action Network and AAHPM have some great resources on how to work with your local and federal legislators. Let them know you read this and it is important to you!  Share what you find important about this report with your friends and family.

The key areas covered include:

• Delivery of person-centered, family-oriented care
• Clinician-patient communication and advance care planning
• Professional education and development
• Policies and payment systems
• Public education and engagement

Two of the most interesting issues to me in this report, are 1) the call to payers and policy makers to integrate medical and social services and the 2) the emphasis on teaching primary palliative skills to all disciplines and specialties.  We can't get to major change with out reforming how the money flows through the system and incentives action over communication, and we as specialists can't satisfy all the palliative care needs in the system, so we need to ensure a basic palliative skill set for all health care providers.

The last major reports were in 1998 (Approaching Death: Improving Care at the End of Life) and 2002 (When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families) and they helped spur a great growth in palliative care as a specialty for physicians.  We have a tent pole now it is time to raise the roof.

Major articles featuring the IOM report (will be updated- check back):
New York Times - End-of-life Care needs Sweeping Overhaul, Panel Says
Kaiser Health News - Dying in America is Harder Than It Has To be, IOM Advises
Science 2.0 - US Health System Doesn't Think About End of Life Care - Yet
Business Insider - US Needs Better End-of-Life Care, Which Might Cut Costs: Study
Washington Post (blog) - It's Time to bury the 'death panel' myth for good. Is this the way to do it?
the kb Group (blog) - The New IOM Report on Dying in America
Geripal (blog) - New IOM Report on Dying in America
Forbes (blog) - Reimagining End of Life Care

*In case you have not been a long time reader, you may not know that I highlighted some potential gaps in the IOM committee when it was first announced in January 2013. While it was not meant as a means to get on the IOM committee (I applied the normal way and was initially not selected), some people put in my name to the IOM, and they added me as a member in February 2013.  It was really a fantastic experience and I learned so much from the many smart people on the committee. I would have loved to write about it while I went through it and share it with all of you, but the IOM review process stresses impartiality and confidentiality as you build the report. But now the report is out in the wild and I hope you will join me in spreading this important information.

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by  adaphobic

A 50 -year-old woman calls the palliative care office requesting an outpatient evaluation. She says that she was diagnosed with rheumatoid arthritis approximately one year ago. She has gained benefit from initiation of disease modifying anti-rheumatic drugs yet she is still left with residual pain that has caused her to cut back on her work schedule. She reports over the phone that she has stopped going to church because she has a hard time sitting through long early morning church services and she's also developed depression. She read about palliative care on a website and decided to give the clinic a call to request an evaluation.

Is this a scenario which you have been encountered previously ?

I ran across a blog post the other day ("Palliative Care: The Pal for Every RA Patient") from an enthusiastic advocate for patients with rhematoid arthritis who suggested that palliative care might have a role in this type of patient.

Let's review some generally accepted "criteria" for "early" involvement of palliative care:

• Does the patient have a serious illness? No one can argue the fact that rheumatoid arthritis is very serious.
• Does the patient have  a burden of symptoms? It certainly seems so. Check.
• Does the patient had significant psychosocial and spiritual concerns? Yes indeed.

I think it is flattering that palliative care would be considered an option in this type of scenario. It means that our field's message is truly getting across to a wider audience and that our philosophy is resonating with that audience.  The biopsychosocial model which underpins palliative care also applies very well to care of patients with rheumatoid arthritis.  If an expert palliative care inter-disciplinary team is to see patients as described above, though, we are going to need to bring our sleeping bags into work.

The recent CAPC Public Opinion Survey suggested that we should say that we see patients who have "serious" illness rather than "advanced," "life-limiting," or "terminal" diseases (see Christian's post about the survey here).  I have found this to be helpful as I describe our services to new patients/families.  If we want to see patients at an appropriate point in their illness course, create appropriate demand amongst patients/families, and ensure they will embrace us from the start, then using "serious illness" does seem to be a more sensitive approach (for finding cases which may be appropriate for palliative care). 
      
We'll likely never find an ideal 1-2 word adjective to describe the type of patients we think we can benefit most.  Most of the terms above represent general statements regarding prognosis but still leave a lot for interpretation (eg when in the does one become "terminally ill"?)  "Serious" tells you even less regarding prognosis- it's only a vague conception of how a patient or family perceives their illness. We  need to accept that while "serious illness" is more sensitive than other terms , it probably isn't as specific.  As we try to maximize the number of appropriate early referrals, we'll continue to be challenged to determine what our role is for patients as described above.
 
Intersections between palliative care and rheumatology do definitely exist, though.  The author of the blog post does refer to a journal article which describes some cases where palliative care is most certainly appropriate. This article is worth a glance and I have encountered some similar issues in my clinical work.

Certainly I do not discourage this type of advocacy. I remember from my residency being exposed to several rheumatologists who practiced medicine using a biopsychosocial philosophy. I'm sure that many of them would welcome greater interdisciplinary involvement.   Perhaps palliative care's greatest benefit for these patients would be more indirect than seeing every patient.  System-wide educational and quality improvement palliative care initiatives may be where the value is for these patients.

How would you recommend that a palliative care team handle this type of request for an evaluation?  Here are some possible options:

• I would schedule the patient for an appointment with a plan to provide a single evaluation, sending recommendations back to the rheumatologist and primary care physician.
• I would be open to the possibility of comanaging this patient over time alongside the patients rheumatologist and primary care physician.
• I would consider taking over this patient's primary care as the palliative care clinician.
• I would not schedule an evaluation of the patient.
• Outpatient palliative care clinic?  We're barely keeping our heads above water seeing patients in the hospital!
• Other.

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by Lyle Fettig

The Journal of Clinical Oncology published a Swedish study which examines correlation between patients being informed of imminent death status and other palliative care quality outcome measures. In the study, 91% of patients were informed of their imminent death status.  How was this measured?  Sweden has a national palliative care registry which is described in the study text (click the little Union Jack at the top right of the page to view the front page in English) :

This online register was completed by the physician and/or nurse responsible for the patient's care during the last week of life, although HCPs were not aware of the research question of this study. The design of the SRPC Web questionnaire does not allow any missing data at submission. The Web questionnaire is based on the 11 principles constituting good death as defined by the British Geriatrics Society and was designed to be used in any care setting, independent of diagnosis, with the intent to look retrospectively at important aspects of care delivered during the last week of life. The 25 items on the SRPC include 14 questions that cover background data of patient and reporting unit and three questions that cover items not considered relevant to the aim of this study (ie, use of visual analog or numeric rating scales during last week of life, frequency of pressure ulcers, and staff reflection). The remaining eight questions covering, for example, degree of autonomy, information about imminent death, symptom control, parenteral as needed (ie, pro re nata or PRN) prescriptions, and preferred location at time of death, were included in the analysis in this study.

The ACP Hospitalist Blog commented on this study in more detail right after the study was released.  I'm going to keep my comments on the results brief.  The bottom line was no surprise.  Being informed of imminent death status correlated positively with more prn symptomatic medication orders, family being informed of imminent death status as well as being offered bereavement services, and patients recorded as dying in their preferred location.  Being informed did not correlate with increased anxiety or pain.  Minor methodological issues aside, this is yet more data (need we more?) to suggest that we should get over the worry about the effect of prognostic information on patients, even at the very end. When we don't sensitively explore patients' wishes for prognostic information and then give them info when they want it, it's usually because of our own discomfort rather than a protective effect for the patient.

What really strikes me about this study though is the existence of the database which made the study possible.  Considering the fact that I would struggle to access many of these data at my own institution, it's amazing that Sweden has a national database and that over 13,000 subjects could be included in the study.  Sweden is not unique in their attempt to measure various outcomes on a population level near the end of life.  See this Canadian study looking at the trajectory of performance status and symptom scores in patients with cancer in the last six months of life. 

Would something like this be possible in the United States? Could we develop a common repository for palliative care outcome measurement for individual patients? What are the true patient-centered outcomes which matter most to our patients and families when confronted with serious illness? 

These questions don't exist in a vacuum and should be viewed within the context of the Accountable Care Act and evolving healthcare system.  The Department of Health and Human Services recently released final rules for Accountable Care Organizations.  The rules document describes 33 quality outcomes which ACO's will need to report in order to qualify for "shared savings" above and beyond Medicare Part A and B reimbursements (see page 324). In the first year of the program, merely reporting all 33 outcomes will be sufficient to qualify for the "shared savings" payments.  In subsequent years, the ACO will need to meet a certain standard to qualify.

Take note of the first ten quality outcomes (all but the last three will be measured by patient survey data):

• Getting Timely Care, Appointments, and Information
• How Well Your Doctors Communicate
• Patients' Rating of Doctor
• Access to Specialists
• Health Promotion and Education
• Shared Decision Making
• Health Status/Functional Status
• Risk-Standardized, All Condition Readmission
• Ambulatory Sensitive Conditions Admissions: Chronic Obstructive Pulmonary Disease
• Ambulatory Sensitive Conditions Admissions: Congestive Heart Failure

The majority of these outcomes are near and dear to palliative care- don't we aim for these day-in, day-out? Palliative care teams can directly influence all of these outcomes for individual patients but also indirectly through local palliative care educational and quality improvement projects.  What other measurable palliative care outcomes correlate with each of these outcomes.  Could some of those other outcomes become standard in future ACO rules?  If you want to help the field (and the American healthcare system) take one small step in that direction, make sure your program applies for TJC Advanced Certification.  In the process, your program will be required to collect/analyze at least four palliative care performance measures on a continuous basis.  High penetrance of TJC Palliative Care Advanced Certification may lead TJC to build palliative care standards into the usual accreditation process for hospitals, etc.   

While I'm rambling on about everything under the sun, the Swedish Palliative Care Registry has a second questionairre that is filled out yearly at a program level (rather than specific to individual patients).  We do already have a registry similar to this: The CAPC National Palliative Care Registry.  Your program should sign up for that, too, if it hasn't already.

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Palliative Care still befuddles many people when they first hear the term.  Even after seeing it people may feel like the many blind scientists touching different parts of an elephant.  Historically we have described to people what palliative care is on our terms as the experts who provide it.  Looking at many organizations definition of palliative care they have not been made based on public opinion and understanding.

The Center to Advance Palliative Care (CAPC) with support from the American Cancer Society Action Network commissioned a study of public opinions on palliative care, but now the question is what can we do with this new information.

Before I get any further on my opinion of the key findings, I need to tell you to take 15 minutes and read the actual report.  Then go talk to your team and your leadership about this.  It needs to be discussed and understood widely by all stakeholders. Do it, I mean it (and then come back here abnd post what you talked about so we can all learn).

The key findings:

Concerns for quality of care for patients with serious illness, which include:

• treatment choices not offered
• lack of physician collaboration
• lack of confidence in plan after leaving the clinic or hospital
• lack of control
• lack of time
• lack of listening

Perfect!  These are all the things palliative care is good at changing.  Could we be a model for other ways to deliver health care effectively?  Take the time and listen to patients, give them a chance at real informed consent of all options after talking to other physicians and effectively communicate the plan to patients. That is what palliative care does!  You can see where this is headed...

People do not know what palliative care is.  78 % of people said they were 'not at all knowledgeable or don't know' when asked about palliative care. Frustrating I am sure to those of you who beat the drum everyday but at least it is not being wholly defined and understood without us (yet).

Physicians equate palliative care with hospice or end of life care.
Well think about it...many in the field nearly always refer to hospice AND palliative medicine, (although I think this is changing a bit and read to the end for more) so isn't that like peanut butter and jelly?  They have to go together right? (H/T @aliciabloom)

Think about palliative care consults in the hospital which is where most docs are exposed to palliative care.  What does a palliative care team get asked to do?  Consults for goals of care discussion when other options have been exhausted, even though palliative care wants and could be involved much further upstream and some institutions are successful at doing this.  So of course many docs would consider palliative care 'brink of death' care.  Which leads people to think 'hospice in the hospital' which I have heard whilst cringing too many times...

'Serious Illness' is perceived as less about 'being terminal' than 'Advanced Illness' (18% v 36%)
So who is your palliative care team looking to serve...those with serious or advanced illness.  Whichever it is, I think we need to have consistency across the board.  Our two major representative organizations are on the same page at least.  (HPNA did not mention patients, but focused more on support of nurses  in their mission statement)

AAHPM's Core Purpose:
To improve the care of patients with life- threatening or serious conditions through advancement of hospice and palliative medicine.

NHPCO's Vision:
A world where individuals and families facing serious illness, death, and grief will experience the best that humankind can offer.

Are all of our member organizations and constituents using similar language?  Is uniformity a important goal?  I think so.


Palliative Care should be made available to patients with serious illness.
Once informed there were high rates (in the 90's) believing there should be access to pallaitive care for their loved ones, regardless of political affiliation (although there were some differences).  To get patients access to quality palliative care, we need to be able to create a consumer demand especially if physicians are reluctant to consult.  After we do that we need to quickly figure out the workforce issues. (Another blog post...)

Language Matters.
Now for the tricky part that really started me thinking about the conjoined twin nature of Hospice and Palliative Care.  They took what was termed an 'old' definition (source unclear - must ask @DianeEMeier) and compared it to a new version (also source unclear). Italics highlight the new portions:

OLD: Palliative care is the medical specialty focused on improving the quality of life of people facing serious illness. Emphasis is placed on pain and symptom management, communication and coordinated care. Palliative care is appropriate from the time of diagnosis and can be provided along with curative treatment

NEW: Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis.  The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment

Nothing totally revolutionary in the definitions except for the outcomes when they compared the acceptance/favorable rate for the two definition.  Mean Rating Score (Scale of 100) improved from 63 to 74 and the % scoring it in the 75-100 range increased from 36% to 60%.

Personally I think the 'new' one is too long for saying in a clinical setting compared to the first, but maybe better for brochure language.  Also to get people who refer to palliative care to introduce you to the family using the second definition will be pretty hard.  Instead they are likely looking for something easy to say and memorable...like 'hospice in the hospital.' (which is not accurate for those of you with that misconception.)

But the part that got me thinking is this new definition really made me look at the 'can be provided with curative treatment' phrase.  I have said it a million times, but now looking at it makes me think that hospice is becoming less of a type of palliative care since it has the emphasis on time via prognostic qualifications per the Medicare Hospice Benefit.  I know the lumping or splitting the terms of hospice and palliative care is a topic of great debate in the field, so I want to let you know that these are my opinions and not those of the AAHPM board.  But I really think we need to keep this as a open debate for our field.  I don't think we are served by splitting the terms, but lumping is causing confusion. 

So how will you use this research?

And a big kudos to the American Cancer Society Action Network for supporting this.  The ACS is really working well with our key leadership orgs. Now if we could only get the NIH, NCI, and others to...

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In what has been an on-again off-again story of 5+ years that was beginning to seem like an unattainable holy grail, the Joint Commission has finally issued a press release stating in Fall 2011 they will be recognizing hospitals with exceptional palliative care programs with an emphasis on:

• A formal, organized palliative care program led by an interdisciplinary team whose members possess the requisite expertise in palliative care,
• Leadership endorsement and support of the program’s goals for providing care, treatment and services,
• A special focus on patient and family engagement,
• Processes which support the coordination of care and communication among all care settings and providers, and
• The use of evidence-based national guidelines or expert consensus to guide patient care.

This is really important for many reasons.  Many hospitals may claim to have palliative care teams but the members of the team, internal support and integration into hospital culture can vary widely as many who have worked with palliative care programs have seen.  No doubt we have seen large increase in the percentage of hospitals with palliative care with support from organizations like the Center to Advance Palliative Care, but The Joint Commission is the 600lb gorilla and more importantly is a non-palliative care organization to help support quality palliative care programs.

I do like the emphasis on the whole hospital program and not just the team. This may set some higher standards than all teams will be able to accomplish, but then I think that makes all of us strive to do better.  Or we can be like Lake Wobegon where everyone is above average.  I just wonder what percentage of teams will be able to achieve this certification for the hospital as a whole.  This cutoff point will be interesting to watch.

When The Joint Commission comes to your hospital, your palliative care team can get excited because now you may be the people that help the hospital achieve more recognition.  The suits in the C-Suite might find a new interest in what your program is doing and hopefully (fingers crossed) you might get the resources and staffing to achieve it!

One slight irony is the Advanced Certification for Palliative Care is housed in The Joint Commissions "Disease-Specific Programs."  Palliative care is about people, I guess we have to keep on educating.

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Diane Meier was recently interviewed for the second time (the first being in 2006) by Richard Heffner on his long running PBS show "The Open Mind." To this audience, the interview does not tackle any ground breaking territory, but it is summarizes well hospice and palliative care, the similarities and the differences. To use this as a training tool for some good sound bites which may be helpful when you need to give your elevator pitch on what we do.