Join National Healthcare Decisions Day…Because Your Decisions Matter!

April 16, 2014, will be the seventh annual National Healthcare Decisions Day.  The annual event, has been formally recognized by Congress and numerous state and local governments, and has included participation by 76 of the most prominent national healthcare, religious, and legal associations and organizations. 

 

At every level, the goal of this nationwide initiative is to ensure that all adults with decision-making capacity in America have both the information and the opportunity to communicate and document their future healthcare decisions.  The first years’ results were impressive—over 750,000 people obtained resources to make their healthcare decisions known—but there remain millions of Americans to go. 

While making healthcare decisions is often difficult in the best of circumstances, making decisions for others is even more complicated. Each of us has the ability to guide our healthcare providers and our loved ones about what we want. Advance directives give you the ability to document the types of healthcare you do and do not want, and to name an “agent” to speak for you if you cannot speak for yourself. Having an advance directive can be valuable for all adults, regardless of current age or health status.

In recognition of this, National Healthcare Decisions Day strives to provide much-needed information to the public, reduce the number of tragedies that occur when a person’s wishes are unknown, and improve the ability of healthcare facilities and providers to offer informed and thoughtful guidance about advance healthcare planning to their patients.

Please visit the National Healthcare Decisions Day website at www.nhdd.org for a variety of free materials (including free advance directives forms for every state) and tools to assist with thoughtful reflection on healthcare choices and ideas on how to get involved. Additionally, please share this information with your loved ones and colleagues.
With healthcare, “your decisions matter,” however, others need to know your wishes to honor them. There are no wrong answers when thinking about healthcare choices and completing an advance directive. Please use April 16, 2014, to decide, discuss, and document your wishes, whatever they may be.

Hospice Community Honors Its Volunteers during National Volunteer Week, April 6 - 12

National Hospice and Palliative Care Organization salutes the 400,000 trained hospice volunteers who serve every year.

Forty years ago, President Richard Nixon declared the first National Volunteer Week to recognize Americans who give of their time and talents to benefit others. This was the same year, 1974, that the Connecticut Hospice – one of the first hospices in the country – opened its doors changing the way dying persons were cared for in the U.S.

During National Volunteer Week, April 6 – 12, the National Hospice and Palliative Care Organization celebrates the work of all the dedicated hospice volunteers who provide support, companionship and dignity to patients and families being served by hospice.

More than 400,000 trained volunteers provide 19 million hours every year to help care for patients and families and to support hospice programs in their mission to serve.

Hospice volunteers are often at the bedside of patients and families but they also assist in the office, help raise awareness, contribute to educational programs, support bereavement programs, provide fundraising support, and more.

The National Hospice and Palliative Care Organization reports that every year, an estimated 1.6 million patients and their family caregivers receive the high-quality, compassionate care that hospice provides.

“Hospice volunteers help the people they serve live every moment of life to the fullest and enable the organizations they work with to achieve their mission in the community,” said J. Donald Schumacher, NHPCO president and CEO. “Most hospice volunteers choose to give their time helping others because of their own experience with the compassionate care hospice provided to a dying loved one.”

The overwhelming majority of hospice care is provided in the home and hospice volunteers are important members of the interdisciplinary team that make this happen.

It is federally mandated under Medicare that five percent of all patient care hours be provided by trained volunteers reflecting the vital role that volunteers play in the provision of care.

 

Thank you to every dedicated hospice volunteer serving in communities across the county.

2014 CTC Call for Proposals Deadline Has Been Extended!

Consider being part of the faculty at NHPCO's 2014 Clinical Team Conference.  There's still time to submit a proposal. Given that the last two weeks have been fraught with an abundance of weather issues, NHPCO has extended the CTC call for proposals deadline to February 24th at midnight (ET). 

Share your expertise with other hospice and palliative care professionals, learn from experts in the field, and enjoy the camaraderie of colleagues from around the country while visiting the beautiful Gaylord Resort and Convention Center in Nashville, TN.  Be sure that your organization is represented at the premier conference in our field. To submit a proposal for the 2014 Clinical Team Conference and Pediatric Intensive, visit the online submission page. 

2nd National Policy Symposium to look at length of service issues

NHPCO’s Hospice Action Network will host its second annual policy symposium, The Right Care and the Right Time:  An Open Conversation on Hospice Length of Stay, on March 25, 2014 in Washington, DC, to explore issues related to appropriate access for patients considering hospice care.

“While much policy attention has been dedicated to the 10 percent of patients who receive care under the Medicare Hospice Benefit for more than 180 days, there has not been nearly enough attention paid to more than 60 percent that die within 30 days,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization.

Regulators and organizations such as MedPAC have voiced concerns about long length of service (more than 180 days) that some hospice patients receive. In recent months, some media sources have focused on this segment of the hospice patient population, often misunderstanding the value hospice provides patients and family caregivers beyond what is known as “brink of death” care.

Many people incorrectly associate the prognosis requirement of six months or less that is necessary for a patient to access care under the Medicare hospice benefit as a limit to the amount of time a patient can receive care.  As long as the patient continues to meet the prognosis of six months or less – meaning the physician might expect the patient to die within six weeks if his or her medical condition continues to advance – the patient is eligible for hospice care.

In order to create a public dialogue and bring transparency to this complicated set of issues, the National Hospice and Palliative Care Organization’s HospiceAction Network (NHPCO HAN) is hosting The Right Care and the Right Time:  An Open Conversation on Hospice Length of Stay.

The second annual policy symposium hosted by NHPCO HAN is set for Tuesday, March 25, 2014, from 9:00 AM – 12:00 PM at Union Station’s Columbus Room in Washington, DC.  For event details and registration information, visit hospiceactionnetwork.org/symposium.

 

HAN's 2013 Policy Symposium featured opening remarks

from Joe Klein of TIME Magazine.

 

First Ever Global Atlas Identifies Unmet Need for Palliative Care

Only 1 in 10 people who need palliative care - that is medical care to relieve the pain, symptoms and stress of serious illness - is currently receiving it. This unmet need is mapped for the first time in the Global Atlas of Palliative Care at the End of Life, published jointly by the World Health Organization (WHO) and the Worldwide Palliative Care Alliance (WPCA).

 

Palliative care is more than just pain relief. It includes addressing the physical, psychosocial and emotional suffering of patients with serious advanced illnesses and supporting family members providing care to a loved one.

 

About one third of those needing palliative care suffer from cancer. Others have progressive illnesses affecting their heart, lung, liver, kidney, brain, or chronic, life-threatening diseases including HIV and drug-resistant tuberculosis.

 

It is estimated that every year more than 20 million patients need palliative care at the end of life. Some 6% of these are children. The number of people requiring this care rises to at least 40 million if all those that could benefit from palliative care at an earlier stage of their illness are included. Hospice and palliative care often encompasses some support to family members, which would more than double care needs.

 

In 2011, approximately 3 million patients received palliative care, the vast majority at the end of their life. Although most palliative care is provided in high-income countries, almost 80% of the global need for palliative care is in low- and middle-income countries. Only 20 countries worldwide have palliative care well integrated into their healthcare systems[1].

 

“The Atlas shows that the great majority of the global need of end-of-life care is associated with noncommunicable diseases such as cancer, heart disease, stroke and lung diseases,” says Dr Oleg Chestnov, WHO Assistant Director-General for Noncommunicable Diseases and Mental Health. “While we strengthen efforts to reduce the burden of the biggest killers in the world today, we must also alleviate the suffering of those with progressive illness who do not respond to curative treatment.”

 

The Atlas calls on all countries to include palliative care as an essential component to every modern healthcare system in their moves towards universal health coverage. This means addressing barriers such as:

1) lack of policies recognizing palliative care and the need for care both at the end of life and during progressive illnesses;

2) lack of resources to implement services, including access to essential medicines, especially pain relievers;

3) lack of knowledge of health care professionals, community volunteers and members of the public about the benefits of palliative care.

“Our efforts to expand palliative care need to focus on bringing relief of suffering and the benefits of palliative care to those with the least resources,” adds David Praill, Co-Chair of the WPCA. “This will take courage and creativity as we learn from each other how to integrate palliative care into existing but very limited healthcare systems.”

Last week, the Executive Board of WHO called on countries to strengthen palliative care and to integrate it into their healthcare systems. It is expected that the 67th World Health Assembly will discuss the subject in May 2014.

The importance of palliative care is being emphasized by the WHO Global Action Plan for the Prevention and Control of Noncommunicable Diseases 2013–2020 and the most recent WHO essential medicines list that includes a specific section on medicines for palliative care.

* * *

Download the Global Atlas for Palliative Care at the End of Life (PDF); or visit the WPCA website at http://www.thewpca.org/resources

Global Action Plan for the Prevention and Control of NCDs 2013-2020: http://www.who.int/nmh/events/ncd_action_plan/en/

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[1] Australia, Austria, Belgium, Canada, France, Germany, Hong Kong Special Administrative Region, Iceland, Ireland, Italy, Japan, Norway, Poland, Romania, Singapore, Sweden, Switzerland, Uganda, United Kingdom, United States of America

 

 

Congress Supports Hospice Community Regarding Part D issues.

Yesterday (12/16/13), Congressmen Tom Reed and Mike Thompson sent a letter to Marilyn Tavenner, the Director of the Centers for Medicare and Medicaid Services (CMS). The letter urged CMS to slow down on their recent initiatives regarding Part D and hospice (read this letter online).

This is a direct result of the Hospice Advocacy from the our provider community. The letter contained signatures from 42 Members of Congress from the House of Representatives. Of those 42, two were physicians, and most notably 14 were on the House Ways & Means Committee.

Why does this matter? The Ways & Means Committee has jurisdiction over Medicare issues, including hospice. Ways & Means members can be reluctant to sign on to letters of this nature, but your grassroots relationships coupled with the seriousness of the issues surrounding hospice and Part D were enough to overcome that/ Congratulations are in order for the entire hospice community.

What happens next? The hospice community has now very publicly weighed in on this issue, and (with your help) so has Congress. CMS is currently accepting comments on their draft memorandum through January 6, 2014. NHPCO is collecting case studies of how this guidance would affect hospices. If you are an NHPCO member, please submit comments to regulatory@nhpco.org.

NHPCO and its affiliate organization, the Hospice Action Network, is monitoring several year-end issues here in DC including the ‘SGR’ packages, the budget agreement, and this Part D issue, among others.

Our  work as the voice of hospice on Capitol Hill will continue, and we - along with Hospice Advocates and our supporters - will keep fighting for increased access to hospice care in the United States.

2014 Innovation Forum: Discuss challenges and solutions with EOL peers!

NHPCO's 2014 Innovation Forum is a special event being held in Miami on January 21-23, 2014 that will allow participants to discuss challenges in the field, look at issues of relevance and explore possible solutions and practical models.  The intimage nature of the forum will allow a lot of discussion and networking with other participants.

Also, it's an ideal time to escape the winter weather and enjoy the Florida sun while networking with professional colleagues and discussing end of life care.

You now have until December 15 to register for the Innovation Forum at the early-bird registration rate.

Featured speakers include:  John R. Brandt; Nicholas A. Christakis, MD, PhD, MPH; Joe Flower; Donald Schumacher, PsyD; and William H. Thomas, MD.

Learn more about the Innovation Forum: http://www.nhpco.org/education/2014-innovation-forum