Call to Action: Contact your legislators to support hospice care!

Today, you can make a tangible difference for hospices across the nation. Hospice Action Network and the National Hospice and Palliative Care Organization are encouraging all hospice supporters to call their Members of Congress and voice their concern about the Hospice & Medicare Part D issue.

On June 17, over 240 of your fellow Hospice Advocates, representing 47 states and districts, and every discipline in the IDT, are in Washington, DC, visiting more than 300 Congressional offices to call for support of hospice.

Advocates on Capitol Hill will request that Congress ask CMS to temporarily suspend the Part D implementation for hospices- and Americans across the national are needed to convey this same message from their homes.  

The Hospice Action Network has created an easy to use online "Click to Call" Campaign that will help people understand the issue and then connect them to their Congressional representatives. The whole process should take no longer than 30 minutes, start to finish- that’s all it takes for you to make a difference.

To watch our video, which explains the Part D policy changes, and how the calling system works to connect you to your Members of Congress, visit this special page of the Hospice Action Network website.

 

CMS Part D policy hurting hospice patients and families

A hospice patient in Oklahoma City is being denied his medications to treat his COPD, while coping with a diagnosis and treatment for tongue cancer.  In Cadillac, Michigan a patient struggling with colon cancer is being denied insulin to treat his diabetes and is in danger of diabetic shock.

Due to a recent and poorly thought out Medicare Part D Prescription Drug policy, dying patients are revoking hospice services to maintain access to other necessary prescriptions for diseases unrelated to their terminal illness that Part D have paid for until recently. 

Patients’ families are left at the pharmacy counter with no refill of medications, after the pharmacist announces that because the patient is on hospice, the pharmacy is no longer allowed to fill their prescriptions – which in not accurate.  Or they are going days, sometimes weeks, without the necessary medication to manage symptoms that were present before they elected the hospice benefit due to unnecessary complications in approving prescriptions under Part D.

The intention of the new Medicare Part D policy implemented by the Centers for Medicare and Medicaid Services is to prevent the federal government from incurring duplicate costs for medications of hospice patients. 

The National Hospice and Palliative Care Organization has strongly opposed the inadequate and haphazard implementation of this guidance. 

NHPCO agrees that hospice providers should be held responsible for all drugs that are related to the terminal diagnoses and those drugs that are unrelated should be billed to Medicare Part D.  

NHPCO acknowledges that there have been instances of Part D payment for drugs that should have been covered by the hospice provider under the Medicare hospice benefit. 

NHPCO continues to encourage CMS to halt the implementation of the Part D guidance and convene key stakeholder groups to collaborate and create a strategic and uniform process.  An effective solution can be reached so that Part D providers, pharmacists, hospice providers and beneficiaries have developed a coherent process together and hospice patients are not denied the medications they need at the end of life.    

NHPCO and NHF Mourn the Death of Chair Emeritus Zachary Morfogen

With much sadness the National Hospice and Palliative Care Organization and the National Hospice Foundation share the news of the death of Zachary Paul Morfogen, of Palm Beach who died Tuesday, May 27, 2014. He was 85 and was with family in Pennsylvania at the time of his death.

As founding chairman emeritus of what was the National Hospice Organization and the National Hospice Foundation, Mr. Morfogen was a longtime advocate for hospice and currently served on the Foundation’s Board of Governors.

He became one of the nation’s earliest advocates for hospice care during his tenure as a trustee of Riverside Hospital in New Jersey.  While there, Mr. Morfogen persuaded Riverside Hospital to establish one of the nation’s first free-standing hospices and later convinced Time magazine to do a story about the then growing hospice movement in the U.S.

During the early years of his work with Riverside Hospital, Mr. Morfogen saw firsthand the need for more compassionate care for the dying. At the suggestion of a colleague, he visited Cicely Saunders, founder of St. Christopher’s Hospice in London and widely recognized as the founder of the modern day hospice model. About his visit at St. Christopher’s he shared:

One day there, I saw a hospice patient who had to be in her eighties celebrating her birthday – big party, cake, candles, the whole bit. I said to Cicely, “So, how long does she have left?” Cicely said, “Oh, about a week.” I thought, wow, what a difference between what this was and what I saw at Riverside.

He was dedicated to the arts and was actively involved in the creation of the ground-breaking exhibition, “Hospice: A Photographic Inquiry,” that opened at the Corcoran Gallery of Art in Washington, DC in 1996 and then toured the nation.

A love for the power of art to communicate and educate led to the creation of the National Hospice Foundation’s Zachary Morfogen Art of Caring Award which recognizes those who use the arts to increase awareness of hospice care.

Mr. Morfogen was a painter and author whose books included You Gotta’ Have Art and Dealing with Death Free From Fear which was published only this month.

He is survived by his two children and their spouses, seven grandchildren, two great-grandchildren, and a sister. His beloved wife, Marilyn, died in 2011.

Memorial contributions may be made in his memory to the National Hospice Foundation, 1731 King St., Alexandria, VA 22314 or The Roosevelt Institute, New York, NY.

Mr. Morfogen’s obituary and online condolence book are available online.

Ground-breaking Palliative Care Resolution Adopted at World Health Assembly in Geneva

Signals progress to end unnecessary pain and suffering due to lack of quality care

The National Hospice and Palliative Care Organization joins other palliative care advocates across the globe in celebrating the resolution on palliative care adopted at the World Health Assembly on May 23, 2014 in Geneva, Switzerland.

The adoption of this first-ever resolution calling for the integration of hospice and palliative care  into national health services reflects growing awareness of the unaddressed care needs for the millions of people worldwide with  life-limiting conditions such as cancer, heart disease, HIV, and multi-drug resistant TB.

The resolution outlines clear recommendations to improve access and availability of hospice and palliative care. These include ensuring palliative care is included in all national health policies and budgets, and in the curricula for health professionals.  Iit also highlights the critical need for countries to ensure that there is an adequate supply of all essential palliative care medicines for appropriate pain control for adults and children.

The Sixty-seventh session of the World Health Assembly  took place in Geneva May, 19 – 24, 2014. The WHA is the supreme decision-making body of World Health Organization.

Read the full NHPCO press release (05/28/14).

NHPCO Launches New Moments of Life Campaign

Patients’ and families’ stories show hospice is about more than death – it’s about life

In celebrating the 40^th anniversary of hospice care in the United States, NHPCO is excited to introduce a new national campaign, “Moments of Life: Made Possible by Hospice,” that will show all Americans that hospice focuses on living and enables special moments and memories at the end of a life for patients and loved ones.

A father’s final wedding dance with his daughter; a Veteran’s visit to the WWII Memorial; the opportunity to bring an infant daughter home; an afternoon tea party with grandchildren… these are only some of the moments made possible by hospice.

The Moments of Life awareness campaign will feature stories gathered by hospices across the country of patients and families experiencing hospice care first hand. The stories will take the form of videos, photos, audio recordings and text and will offer a vibrant cross-section of different perspectives of hospice.

“In this campaign, we are looking for real stories that show patients’ abilities to ‘do more’ as a result of their experience on hospice,” said Anita Brikman, senior vice president of communications for NHPCO. “No matter what format is used, these stories should show America that even when you’re dying, there is still a lot of living to do.”

For many who have not seen hospice in action, it has become a common misconception that hospice patients are merely lying in bed, waiting for their end to come. For families who have experienced hospice, they see the focus is not on dying—it is about living as fully as possible.  Hospice not only provides the highest quality care, it affords more moments, memories and opportunities.  

For more information visit the new Moments of Life microsite at MomentsOfLife.org.

 

 

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.