Volume I Issue 5.  June 24, 2009.

In This Issue

• ELNEC Offered October 22, 29 at Howard University Hospital
  
• Help Ensure DC Patients Can Fill Pain Medication Prescriptions
• 23 New Volunteers Join the Partnership
  

News and Announcements:

• Third Annual Pediatric Palliative Care Conference -- September 11 and 12, 2009
• Apply for National Palliative Care Awards
  
• Resources for After Death Care: the Funeral Consumer Alliance
• Public Policy Update: Palliative Care in Healthcare Reform
  

Health Care in the Media:

• Terminally Ill Patients Delay Talk of Hospice
  
• Patient Activist Wins Battle to Die in Hospice with Bills Reimbursed
  
• End-of-Life Costs
• UVA Professor Examines "Making Life and Death Decisions After Terry Schiavo"

Help Improve the Comfort Care Order

The Partnership has progressed in collecting feedback from healthcare professionals and community members about how the DC Comfort Care Order can made be easier for patients and families. Having heard from staff at most DC hospitals and hospice providers, we have developed preliminary findings on how to enhance the efficiency and effectiveness of the Comfort Care Order.

We will be continuing to conduct interviews and solicit input on this issue throughout the summer, so that our recommendations represent the voices of as many of DC's diverse healthcare organizations and individuals as possible.

We would love to hear from you if you would be willing to share your thoughts.

Send us your feedback over our online feedback form for health care professionals or our online feedback form for patients and families, or call us at 202-895-9489 to schedule an interview.

Professional Education Committee       

The Professional Education Committee is planning several exciting initiatives.

The Committee is delighted to be strengthening its partnership with Howard University by coordinating two programs:

• ELNEC training at Howard University Hospital on October 22 and 29.  Registration will begin in August.

• Educational seminars on palliative care for medical residents in at Howard University.  Three to four presentations will be conducted during the 2009-10 academic year.

The Committee is also:

• Developing a series of presentations on integrating palliative care into the long-term care setting, in conjunction with the Palliative Care Program at Potomac Valley Nursing and Wellness Center. 

• Performing ongoing outreach and training on the DC Comfort Care Order for healthcare professionals.

The next Committee meeting will take place at 4:30 pm on Monday, July 13. Join the Committee to learn more.

Public Education Committee

The Public Education Committee has recently requisitioned a graphic designer to finalize the layout for the brochure that the Committee has been developing on the DC Comfort Care Order program.  Following completion of the design, the Committee will create a low-literacy version of the brochure, and translate the brochure into the languages most commonly spoken in our community.

The Committee is also planning to incorporate a research component into educational presentations that will be offered on palliative and end-of-life care for seniors and their families at DC senior centers.  In collaboration with a respected local research firm, focus groups will be conducted with target demographics to investigate audiences' knowledge levels about palliative care, as well as the most effective strategies to inform them about it.

Find out more by signing up for the Public Education Committee.  

Public Policy Committee                          

The Public Policy Committee is actively advancing two projects: 

• Improving access to pain management medications in DC's under-served neighborhoods. The Committee is surveying local pharmacists about whether they stock pain medications and reasons why they may not.  The Committee is partnering with national healthcare organizations and government representatives to further explore barriers preventing patients from filling prescriptions.

• Advocating for the improvement of the DC Comfort Care Order.  The Public Policy Committee has interviewed representatives from most DC hospitals and hospices to solicit feedback on how the Comfort Care Order program might be made more effective.  Interviews will continue throughout the summer.  Preliminary findings charting strengths and areas of concern have been disseminated.  

Public Policy Committee will next convene on Wednesday, July 23 at 3:30 pm.  Get involved with the Committee for more details.

The Partnership is coordinating a directory of experts in palliative care who are willing to share their knowledge at speaking engagements. 

Boost your CV while helping to spread the word about palliative care by joining our Speakers Bureau today!

Download the sign-up form and fax it to 202-895-9438.

About this E-Newsletter 

The Greater Washington Partnership has created "The Partnership Perspective" to help keep you apprised of news and announcements on palliative and end-of-life care in our community.

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Partnership Updates:

ELNEC Offered October 22, 29 at Howard University Hospital 

Registration Begins in August

The ELNEC (End-of-Life Nursing Education Consortium) curriculum provides the specialized knowledge and skill required to offer high-quality healthcare to patients and families facing advanced illnesses.  Although tailored primarily to nurses, ELNEC includes relevant information for all healthcare professionals who may confront end-of-life situations in their practice.  The training has also helped patients and consumers dealing with life-limiting illnesses.

• Register for the training. Registration for the October ELNEC training will begin in August.  If you, your friends, or your colleagues would like to attend, please contact us to ensure you're on the mailing list to receive the registration form when it becomes available.

• Host or help plan a training.  We will be holding ELNEC twice a year, at the facilities of the organizations partnering with us in planning the training program.  Our current partners include: Sibley Memorial Hospital, Holy Cross Hospital, George Washington University Hospital, Howard University Hospital, VA Medical Center, Community Hospices, and Capital Hospice.  We welcome additional collaborators; email yolanden@gwpartnership.org to join us. 

• Sponsor the training.  Our ELNEC program is made possible by the generous support of businesses in our community.  Get in touch with us to learn about opportunities to promote your work by sponsoring the upcoming training.

For more information, visit the website of the Partnership's ELNEC training program.

Help Ensure DC Patients Can Fill Pain Medication Prescriptions

Through its Public Policy Committee, the Greater Washington Partnership is researching barriers impeding underserved DC communities from filling pain management prescriptions, including low rates of opioid stocking in DC pharmacies.  We'd like to inform you of several opportunities to help ensure the accessibility of pain management medications that patients need to safeguard their quality of life:

• The Partnership has distributed a survey to pharmacies in DC Wards 1, 3, 7, and 8 to research whether or not opioids are stocked and, if not, why not.  Building upon research previously conducted in Michigan and New York, the survey asks pharmacies whether they refrain from stocking opioids due to low demand, fear of theft, or difficulty navigating FDA and DEA restrictions.  Please encourage your colleagues in pharmacies to complete the survey.       

• In addition, we are coordinating a meeting with government officials and DC-based organizations addressing opioid stocking at a national level, including the American Society of Consultant Pharmacists, the Lupus Foundation, and the National Organization for Rare Diseases.  Contact us if you or your organization would like to partner with us to address barriers to accessing pain medication.

• We'd also like to remind you to please submit comments on the FDA's newly proposed Risk Evaluation and Management Strategy (REMS) for long-acting opioid analgesics by June 30, 2009.  The FDA could posssibly act to remove certain opioids from the market if they believe the medications' benefits are outweighed by their risks.  We urge you to please write the FDA to encourage the adoption of balanced policies that protect access to medications while minimizing misuse, abuse, and diversion. Submit your comments via the FDA's online form. 

For more information, reach us at info@gwpartnership.org or 202-895-9489. 

23 New Volunteers Join the Partnership Since April 2009

Unite with Us and Support Palliative Care In Our Community

Since April 2009, twenty-three new community members and health care professionals have signed up to join the Partnership and help improve the availability and quality of palliative care in DC, suburban Maryland, and northern Virginia.  We are delighted to see that we are gaining recognition and generating enthusiasm about palliative care as we move forward and advance our mission.  Read more about volunteer opportunities to discover what all the excitement is about. 

Third Annual "Quality of Life for the Children" Conference on Pediatric Palliative Care To Be Held in September 2009

The DC Pediatric Palliative Care Collaboration is coordinating their third annual "Quality of Life for the Children" National Conference on pediatric palliative care, which will be held on September 11 and 12, 2009. "Quality of Life for the Children" brings together national and international experts in providing comprehensive care to children and families facing life-limiting and life-threatening illnesses.  State-of-the-art information on quality of care for pediatric patients will be disseminated.

Educational topics and featured presenters are listed in the conference brochure from the DC Pediatric Palliative Care Collaboration.  

To register online, please visit http://www.eventbrite.com/event/340212585.

Apply for National Palliative Care Awards 

We'd like to encourage palliative care professionals in the Greater Washington region to submit nominations for national Awards programs announced this summer:

• Application packets are due for the American Hospital Association's 2010 Circle of Life Awards by August 9, 2009.  The Circle of Life Awards recognize palliative and end-of-life care programs for innovation. Winners of the 2009 Awards will be announced later this summer.  We congratulate DC's own Providence Hospital for earning a 2008 Circle of Life Citation of Honor. Obtain the application online at the AHA Circle of Life Awards website.
  

• The Cunniff-Dixon Awards will recognize four physicians for their exemplary commitment to advancing end-of-life care.  Three prizes of $15,000 will be granted to physicians early in their career who have already significantly contributed to the discipline of end-of-life care through clinical work and/or practical research.  One physician will receive a $50,000 prize in honor of his/her demonstrated excellence in end-of-life care practice and leadership.  Learn more about the Awards on the Cunniff-Dixon Foundation website.

Resources for After Death Care

By Barbara L. Blaylock, M.D.

As professionals who work with families experiencing the death of a loved one, we should know about the resources available to them for guidance in arranging funeral or cremation services. Until about a year ago, there was a local affiliate of the national nonprofit Funeral Consumers Alliance (FCA) in D.C. called the D.C. Memorial Society. That entity dissolved for lack of volunteer support. The D.C. area is now being served by the Funeral Consumers Alliance of Maryland and Environs (FCAME) which also serves Delaware and all of Maryland. If you are not familiar with this organization, which is a volunteer-run nonprofit of which I am currently serving as Vice President, you should be.

Public Policy Update: Palliative Care in Healthcare Reform 

As endeavors to improve the healthcare system progress in the White House and Congress, we'd like to inform you of newly proposed legislation in the Senate that promotes the incorporation of palliative care into healthcare reform:

• Virginia Senator Mark Warner has introduced the “Senior Navigation and Planning Act of 2009” which aims to help seniors and their families make more informed medical decisions.  The Act would enhance Medicare and Medicaid coverage of advanced illness care management; require doctors to provide patients with information on living wills and planning tools; give providers incentives to achieve accreditation and certification in hospice and palliative care; encourage comprehensive discharge planning; and increase public awareness about the importance of end-of-life planning.    

• "The Advance Planning and Compassionate Care Act of 2009," introduced by Senators Susan Collins and John Rockefeller, increases access to high-quality palliative care.  The Act would provide Medicare, Medicaid, and CHIP coverage for advance care planning consultations, require that advance directives be portable between states, make grants available to states for the development of electronic advance directive registries, establish standardized measures to assess the quality of palliative and end-of-life care programs, mandate that concurrent curative care be made available to children who qualify for hospice, conduct a National Mortality Followback Survey, create a National Geriatric and Palliative Care Service Corps, and establish the National Center on Palliative and End-of-Life Care at NIH.  

We encourage you to please contact your local government representatives and attest to the need for palliative and end-of-life care to be prioritzed and advanced through current and ongoing efforts to reform American healthcare.

(from the Boston Globe, 6/15/09)

"Judi Chamberlin of Arlington, a patient advocate known for championing the rights of the mentally ill, has won her battle to have her unpaid hospice bills reimbursed by her insurance company."  

End-of-Life Costs

(from The Brian Lehrer Show, 5/15/09)                                                                   

"In his recent interview with the New York Times's David Leonhardt, President Obama said that a key step to health care reform will be having a "very difficult democratic conversation" about the high cost of end-of-life care in the United States, which accounts for up to 80% of health care costs. Judy Bacharach, columnist at Obit Magazine and The Checkout Line, imagines what such a national conversation would look like." 

UVA Professor Examines "Making Life and Death Decisions After Terry Schiavo"

(from The News Leader, 6/2/09)

"Every day, thousands of people quietly face end-of-life decisions as agonizing as those made famous in the Terri Schiavo case. Throughout that controversy, politicians, religious leaders and legal and medical experts made emphatic public statements about the facts and offered even more certain opinions about what should be done. In her upcoming book, "If That Ever Happens to Me: Making Life and Death Decisions after Terri Schiavo," University of Virginia professor Lois Shepherd details why simple answers were not right for Schiavo and are not right for end-of-life decisions today."  

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