NHPCO Releases Statement and Commentary on Commentary on Palliative Sedation Therapy to Promote Greater Understanding

(Alexandria, Va) – For the very limited number of imminently dying patients whose pain is intolerable and unresponsive to other palliative interventions, the National Hospice and Palliative Care Organization believes that palliative sedation can be a treatment option that should be considered by healthcare providers, patients, and families.

Palliative sedation refers to the lowing of patient consciousness using medications for the purpose of limiting patient awareness of suffering that is intractable and intolerable.
In releasing its position statement and commentary on the "Use of Palliative Sedation in Imminently Dying Terminally Ill Patients," NHPCO seeks to:

1. clarify the position of NHPCO on the use of palliative sedation for patients at the end of life,

2. recommend questions and issues to be addressed when palliative sedation is being considered, and

3. assist health care organizations in the development of policies for the use of palliative sedation.
Approved by the NHPCO board of directors in December 2009, the statement and commentary appears in the May 2010 issue of The Journal of Pain and Symptom Management, and is now publicly available.

The position statement consists of six core tenets:

Availability
For the small number of imminently dying patients whose suffering is intolerable and refractory, NHPCO supports making the option of palliative sedation, delivered by highly trained healthcare professionals acting as an interdisciplinary team, available to patients.

Proportionality
Since the goal is symptom relief (and not unconsciousness per se), sedation should be titrated to reduce consciousness to the minimum level necessary to render symptoms tolerable. For most patients this will mean less than total unconsciousness, allowing the patient to rest comfortably, but to be aroused.

Interdisciplinary Evaluation
There must be a physician with expertise in palliative care leading the intervention. Patients suffering at the end of life will receive optimal benefit from the involvement of a highly-skilled interdisciplinary team. NHPCO recommends convening an interdisciplinary conference specifically about the use of palliative sedation for each patient with whom it is being considered. In all cases, care must be patient- and family-centered. If the needs of the patient and family differ, the primary focus is on the needs of the patient.

Education
Professionals involved in the process of providing palliative sedation must have training and competence in this particular intervention. Providers should be engaged in ongoing education that addresses symptom assessment and management. Further, facility with integration of the ethical considerations related to use of palliative sedation is essential.

Concerning Existential Suffering
Suffering can occur even when physical symptoms are well controlled. As with any other type of suffering, NHPCO believes that hospice and palliative care professionals have an ethical obligation to respond to existential suffering using the knowledge, tools, and expertise of the interdisciplinary team. It should be noted that the lack of concurrence by the NHPCO ethics committee on the definition and assessment of existential suffering precludes a recommendation regarding the use of palliative sedation for existential suffering. NHPCO strongly urges providers to carefully consider this question and supports further ethical discussion.

Relationship to Euthanasia and Assisted Suicide
Properly administered, palliative sedation of patients who are imminently dying is not the proximate cause of patient death, nor is death a means to achieve symptom relief in palliative sedation. As such, palliative sedation is categorically distinct from euthanasia and assisted suicide.

This statement addresses the use of palliative sedation only for patients who are terminally ill and whose death is imminent.

"This document provides valuable guidance about a complex issue that—while not frequently used—is often misunderstood," said J. Donald Schumacher, NHPCO president and CEO. "Our intention is to address the ethical issues surrounding palliative sedation and help hospice and palliative care providers create policies and guidelines to ensure they are well-prepared concerning this treatment option."

"We are not calling for an increase in the practice of palliative sedation but want to take a major step forward to redress some of the common misconceptions," added Schumacher.

Developed by the Palliative Sedation Task Force of the NHPCO Ethics Committee, members of the task force wanted to indentify and analyze the most robust evidence and arguments about palliative sedation and summarize that material in a way that would be helpful to the NHPCO membership.

Timothy W. Kirk, who led the task force commented, "We want to stress in this document that palliative sedation, like all interventions in palliative care, needs to be part of evidence-based practice. There are evidence-based clinical protocols based on a growing body of research that many clinicians are not aware of, but should be. Simply turning up current pain medications is not evidence-based sedation. We have a moral obligation to give our patients the best care possible, and this document is intended to help providers reflect on the nature of that obligation when it comes to the practice of palliative sedation."

The complete statement and commentary, as it appears in JPSM, is available at the NHPCO website (go to nhpco.org/newsroom and click on the link for NHPCO Ethical Statements and Position Statements).

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The Moran Data Project: Is your hospice participating?

The participation of all hospice providers across the country is needed for a very important project that has the potential to impact every provider in the U.S. I'm writing about the Moran Data Project.

For those not familiar with the project, last July, NHPCO retained The Moran Company (a healthcare research and consulting firm specializing in payment reform) to conduct our own data collection and assessment project on behalf of the hospice and palliative care field. This is in response to impending work on hospice reimbursement reform that is now required as a part of the new health care reform law and requires CMS to initiate hospice payment reform no earlier than 2014.

I would like to share the video message linked below:




For those unable to access the video, here is some additional information about the Moran Project.

The Moran Data Project

Through data collected and analyzed in the Moran Data Project, NHPCO will develop and present to CMS and MedPAC alternative Medicare hospice payment reform models that fairly reimburse us for the care we provide. This proactive approach allows us to exert some influence on the process rather than relying solely on government regulators and the data they can access. However, in order for our models to be sound, we must have comprehensive, patient-level data—and for that, we need the assistance of all hospice providers.

The data collection phase of this project began in February and there are now about 200 providers which are submitting data—but we need 800 more providers of all sizes, type and from all areas of the country to step up and contribute data.

By coming together to present to MedPAC and Congress comprehensive data from a unified hospice industry, we can help preserve our core values and our revenue streams. NHPCO will fight for this—but we can't do it alone. Working together to collect data, we can make our voices heard. Members can learn more online at nhpco.org/moran or contact Amanda Forys at The Moran Company at aaforys@themorancompany.com.

Thank you for your participation!

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NHPCO would like to thank the software vendors who are participating in this important data collection project:

• Allscripts
• Cerner BeyondNow
• Consolo Services Group
• Delta Health Technologies
• Homecare Homebase
• McKesson Corporation
• HPMS - Mills & Murphy Software Systems, Inc.
• mumms® Software
• Suncoast Solutions

May 2010 Palliative Care Grand Rounds

The May edition of Palliative Care Grand Rounds for 2010, a "monthly blog carnival" highlighting blog post related to hospice and palliative care, is up at the Medical Futility blog ran by Thaddeus Pope. Check it out today!

The views expressed in the Palliative Care Grand Rounds are the sole responsibility of the authors of each blog hightlighted and does not necessarily reflect the views of NHPCO, this blog or its editors.

Don's 2010 May Update

For more information visit, http://www.nhpco.org

A Closer Look at the Health Care Reform Provisions Impacting Hospice

Earlier this week, NHPCO's Public Policy/Advocacy Team sent you an important update on the passage of the health reform legislation and next steps for the hospice community. NHPCO wants to share what we know about the various provisions impacting the hospice community. In some cases, you will see that there is not yet much information. Many of the provisions will be implemented by the Health and Human Services Secretary, and administered through the Centers for Medicare & Medicaid Services (CMS). But, in order to do that, we believe that the first order of business for the Administration will be to appoint a CMS Administrator to delve into the details of implementation and oversight.

Visit NHPCO's Advocacy page for more information on the provisions that will be significant to hospice.

Health Care Reform Bill Has Moved Through Congress and Signed by President Obama

A Quick Recap

For more than a year, the hospice community has been on the edge of our collective seat, watching the political process that has consumed health care reform. First there were three bills, and then the House and Senate each settled on one version they each wanted to put forth.　 At the end of 2009, we were waiting to see if and when the White House would weigh in and choose a direction to pursue toward passage. At the same time, Republican leadership continually urged for a re-start of the process, from scratch. Along the way, we lost Senator Ted Kennedy, a long time health reform champion and a very good friend of the hospice community. We’ve also had multiple changes in leadership of the committees with jurisdiction over health care reform. To say that this journey has been a winding road is an understatement, but with each curve, Hospice Advocates have been very clear and unified in our messaging to Congress. During this process, we have sent Purple Folder Letters to the White House by the dozen, filled up the White House Comment Line, and contacted Congress (more than 70,000 contacts) so much that they probably recognize you by name!, Now this part of the process is drawing to a close. In the past 24 hours, Congress has moved into the final stages of this round of health care reform.
　
What Passed and What it Means for End-of-Life Care

Sunday night, by a vote of 219-212, the House passed H.R. 3590, the Patient Protection and Affordable Care Act. H.R. 3590 is actually the version of health reform that originated and passed out of the Senate last December. This version of the bill, the one that has now passed both chambers of Congress, softens the productivity cuts to hospice from a proposed $10 billion to $7.8 billion. Here’s an overview of what is in the final package relevant to end-of life care:
　

• Market Basket Cuts & Productivity - Incorporates a productivity adjustment reduction into the market basket update beginning in fiscal year 2013, as well as a market basket reduction of .3 percent for hospice providers from fiscal years 2013-2019.　　Note that these cuts will not take effect until FY 2013.
• Hospice Payment Reforms – (1) This provision would require the Secretary to collect data and update Medicare hospice claims forms and cost reports by 2011.　　(2) Based on this information, the Secretary would be required "implement revisions to the methodology for determining the payment rates for routine home care and other services included in hospice care" no earlier than　FY 2013.　　(3) After January 1, 2011,　a hospice physician or nurse practitioner must have a face-to-face encounter with　each hospice patient to determine continued eligibility for hospice care　prior to the 180th-day recertification and each subsequent recertification, and attest that such visit took place.　 In addition, the Secretary will medically review certain patients in hospices with high percentages of long-stay patients.
• Medicare Hospice Concurrent Care Demonstration Program - Directs the HHS Secretary to establish a three-year demonstration program that would allow patients who are eligible for hospice care to also receive all other Medicare covered services while receiving hospice care. The demonstration would be conducted in up to 15 hospice programs in both rural and urban areas and would undergo an independent evaluation of its impact on patient care, quality of life and spending in the Medicare program.
• Curative and Palliative Care for Children in Medicaid and CHIP - Allows children who are enrolled in either Medicaid or CHIP to receive hospice services without foregoing curative treatment related to a terminal illness.
• Independent Payment Advisory Board - Creates an independent Payment Advisory Board tasked with presenting Congress with comprehensive proposals to reduce excess cost growth and improve quality of care for Medicare beneficiaries as well as the private health system. When Medicare costs are projected to be unsustainable, the Board’s proposals will take effect unless Congress passes an alternative measure that achieves the same level of savings. Congress would be allowed to consider an alternative provision on a fast-track basis. Requires the Board to make non-binding Medicare recommendations to Congress in years in which Medicare growth is below the targeted growth rate.　 Beginning in 2020, requires the Board to make binding biennial recommendations to Congress if the growth in overall health spending exceeds growth in Medicare spending.
• Hospice Value Based Purchasing/Promoting High Value Health Care - Provides the Secretary of HHS the authority to test value-based purchasing programs for long-term care providers, including hospice providers, no later than January 1, 2016.
• Quality Reporting - Requires hospice to report on quality measures determined by the Secretary (endorsed by the new quality measure consensus-based entity) or face a 2 percent reduction in their market basket update. Measures published in 2012 for reporting to begin in 2014.　
• Nationwide Program for National and State Background Checks on Direct Patient Access Employees of Long-term care Facilities and Providers - Establishes a national program for long- term care facilities and providers to conduct screening and criminal and other background checks on prospective direct access patient employees.
• Advancing Research and Treatment for Pain Care Management - Authorizes an　Institute of Medicine Conference on Pain Care to evaluate the adequacy of pain assessment, treatment, and management; identify and address barriers to appropriate pain care; increase awareness; and report to Congress on findings and recommendations. Also authorizes the Pain　Consortium at the National Institutes of Health to enhance and coordinate clinical research on pain causes and treatments. Establishes a grant program to improve health professionals’　ability to assess and appropriately treat pain.　
• Education and training programs in pain care - Secretary may make grants available to hospices and others to develop and implement pain care education and training programs for health care professionals.　

You may still hear talk of the reconciliation bill over the next week or two. More information on that package and the related legislative process can be found in our previous health care reform update. However, we feel confident that all of the health reform provisions that will impact hospice are contained in the package that passed yesterday and are listed above.
　
We’re Still Fighting
While we appreciate the fact Congress continues to embrace hospice as a vital part of health care at the end of life and we’re pleased to see the provisions included expanding access to hospice, we simply can’t afford to lose $7.8 billion from the national investment in end-of-life care.　
　
We have said it all along; two cuts are too much for hospice. And, we mean it. The productivity cuts on top of the more than 4 percent regulatory reduction associated with the elimination of the budget neutrality adjustment factor (BNAF) we are absorbing over the next seven years, is more than the community can or should sustain. As an aside, you, as a Hospice Advocate, working through NHPCO, were the reason the phase-in of the BNAF cuts went from the previous Administration’s plan of three years, to the current schedule of seven years. This gives the hospice community more time to plan for and manage the implementation of these unwarranted cuts.
　
Accordingly, with Capitol Hill Day 2009 just weeks away, NHPCO will be leading the hospice community in a measured, strategic, and phased fight to further soften the cuts before they go into effect in 2013. We’ve done what we needed to do for this phase of health reform. The hospice community was a resource to Congress during this trying past year. We were heard when we said $10 billion was too much to take from hospice and our policy makers heard us when we asked for increased access to hospice for pediatric patients and concurrent care.　
　
NHPCO will continue to ensure that hospice is "at the table" after the political dust settles and before the community and the patients we serve feel the brunt of the cuts.
　
You may be asking, "Why wait until Hill Day, why does it need to be phased?" To be honest, the health care decision makers on Capitol Hill are going to be burned-out and not ready to revisit the reform legislation for a while…probably not until after the November elections. But, that’s good news for us. With Hill Day, away from all the "noise" of health care reform, we will launch an education effort to reacquaint our federal elected officials with the Medicare Hospice Benefit, who we are as a community, the patients we serve and the invaluable services that are provided by hospice in every community across the nation. A focused and consistent re-education effort is critical to a successful, phased strategy to get additional relief from the cuts.
　
Immediate Next Steps
Obviously, the more people we can get on Capitol Hill on April 21st, the stronger the launch of our re-education effort will be. So, visit the Hill Day 2010 Information Page for more information and to register. And for those of you who cannot join us in D.C., stay tuned for exciting opportunities to participate from home!
　
Most importantly, as a unified community with one voice, we need to get the facts together to show Congress what the cuts will mean to the hospice programs that serve their communities and constituents. The NHPCO Regulatory Team has been hard at work on a comprehensive, easy-to use calculator for programs to use to determine the long-term impact of the combined cuts. NHPCO members should receive an email in the coming days with a link to this interactive tool.　
　
As always, we thank you for your Hospice Advocacy. We may not have the end-result we want yet, but your efforts have come a long way in advocating for the patients and families who depend on compassionate, high-quality end-of-life care. Please let us know if you have questions about any of this information by contacting advocacy@nhpco.org.

Wear a White Ribbon to Raise Awareness of Advance Care Planning

Fifth Anniversary of Terri Schiavo’s Death:
Wear a White Ribbon to Raise Awareness of Advance Care Planning

National Hospice and Palliative Care Organization Reminds People, “It’s About How You LIVE”
(Alexandria, Va) – Five years ago national attention was riveted as the husband and parents of Terri Schiavo waged a very public legal battle regarding who had authority to determine if she would have wanted artificial means to prolong her life. While many Americans learned about the importance of planning for critical healthcare decisions before a crisis, two-thirds of the public have not completed an advance directive.

As the fifth anniversary of Ms. Schiavo’s death approaches on March 31, the National Hospice and Palliative Care Organization is encouraging all Americans to wear a white ribbon to increase awareness of advance care planning. The ribbon also reminds people of the importance of both documenting wishes by completing an advance directive, and talking with their loved ones about their care decisions before a medical crisis.

An individual’s preferences for the kind of medical care they would or would not want are very personal and important decisions. Advance care planning lets you decide the kind of healthcare you want at the end of your life—and helps you make your wishes known.

“It doesn’t matter whether you want every medical intervention available up until the day you die, or whether you want to spend the final period of your life receiving what many call ‘comfort care,’—it should be your decision,” said J. Donald Schumacher, NHPCO president and CEO.

“Another critical piece of advance care planning includes talking about your decisions with your loved ones, healthcare providers, clergy, and others important to you,” Schumacher added.

People are occasionally confused by the terms associated with advance care planning. One aspect of an advance directive, called a living will, lets you explain the care you would want. An advance directive also includes a healthcare power-of-attorney which enables you to appoint someone to make medical decisions on your behalf should you not be able to speak for yourself.

The advance care planning ribbon was created by NHPCO’s consumer-engagement program, Caring Connections, to help people focus on the message: “It’s About How You LIVE.” The vision of the LIVE campaign is to motivate people to take at least one step along a continuum of learning, implementing, voicing and engaging in end-of-life issues before a crisis arises.
Advance Care Planning Ribbon Campaign materials are available online and include pledge cards, flyers, Powerpoint presentations and more. (Note: Advance Care Ribbon lapel pins are available from NHPCO's Marketplace.)

Two weeks after this anniversary, annual National Healthcare Decisions Day will be observed in communities across the country. This national day of awareness, held on April 16 every year, is promoted by national, state, and local organizations including healthcare providers, advocacy groups, attorneys, and other organizations. Learn more about this day of outreach at nationalhealthcaredecisionsday.org.
More information about advance care planning is available at caringinfo.org/planningahead or by calling the HelpLine at 1-800-658-8898.

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Contact:
Jon Radulovic
NHPCO, Vice President of Communications
703/837-3139
jradulovic@nhpco.org