Hospital Drift

Speaker: Lisa Berry Blackstock - 

During this session Lisa Berry Blackstock addressed the prevalence of "hospital drift" within the hospital setting where fragmented care and miscommunications are serious hazards for all patients’ safety.

• Hospital drift occurs when hospital personnel deviate from standard, proven protocol.
• Consequences can range from mild (infection) to serious (Ebola.)

Tips for advocates on how best to provide hospital bedside and discharge services to improve care and eliminate errors.

Lisa Berry Blackstock is the Founder and Owner of Soul Sherpa, a company devoted to comprehensive patient advocacy and personal life care protection.

Lisa Berry Blackstock has worked in the field of patient advocacy as an adjunct to estate and life care planning since 1990. A survivor of an originally misdiagnosed nerve disorder, trigeminal neuralgia, which required major brain surgery in 2007 to restore her to health, Lisa believes in the power of patient advocacy not only for herself, but for every person. After recovering from her health crisis, Lisa became more focused to advocate and educate, believing the movement of patient advocacy has just begun and has a bright, strong future.

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Patient Safety - Protect, Prevent, Prepare

Speaker: Jean Rexford -  

Jean Rexford is the executive director of the CT Center for Patient Safety.

Since 2004, the mission of the CT Center for Patient Safety has been to improve the quality of care provided to patients by promoting attention to safety, patients’ rights and the centrality of the patient’s voice. Ms. Rexford also sits on a number of national committees including the National Advisory Council of AHRQ and Consumers Union Safe Patient Project among others.

The CT Center offers programs to nursing and medical schools on the experience of the patient and the importance of patient engagement and involvement in assuring quality care. She is a frequent national panelist representing the patient voice.

You may download the presentation slides for this event, provided by the speaker.

During this teleconference session Jean Rexford addressed the following topics:

Protect

• What are the biggest safety issues?
• How frequently do they occur.

Prevent

• How can you reduce your chances of becoming a statistic?

Prepare

• How can you help your doctor find time to discuss what is important to you and share in your healthcare decisions?

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Networking for the Non-Social: Building a professional network in person and online

Speaker: Casey Quinlan - 

Casey Quinlan gave herself the title “Mighty Mouth” on the theory that if you can’t hide it, hang a flag on it.

After getting a breast cancer diagnosis just days before Christmas in 2007, she wrote the Amazon best seller Cancer for Christmas: Making the Most of a Daunting Gift, which tells her story of managing medical care and exhorts everyone to become their own patient advocate.

She’s a member of the Society for Participatory Medicine, produces audio and video content for the Society of Hospital Medicine’s The Hospitalist Magazine, and is one of the Disruptive Women in Health Care, an online community of women dedicated to serving as a platform for provocative ideas, thoughts, and solutions in health and medicine. She has also been named an ePatient Scholar to MedicineX 2013 at Stanford University, and is a member of a federal workgroup on consumer engagement and health IT.

Casey is a former network news field producer who helped cover breaking news across the globe for over two decades, learning all about what makes a great story. She talked her way out of police custody in Saudi Arabia, and did standup comedy in New York for several years – “fear” is not a word in her dictionary.

Handouts and Worksheets

• Presentation Deck
• Social Media Readiness Assessment
• Social Media Checklist Worksheet
• 10 Questions
• 3 Questions

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Caring From a Distance – Tools to Help Long-Distance Caregivers

Speaker: Nora Jean Levin - 

Nora Jean Levin has been Executive Director of Caring from a Distance since 2004, when the position was created. She is responsible for the organization's website, designed with assistance from a team of long distance caregiver advisors, and powered by CFAD's award-winning technology partner, Trilogy Integrated Resources. With strategic community partners, she created the pilot on-line Metro D.C service directory, forging agreement between CFAD, the Guide to the Retirement Living and the Jewish Council for the Aging Senior Helpline. In 2009, responding to a initiative suggested by two families, Levin spear-headed CFAD's Caregiver Award Program using YouTube and a Caring from a Distance Channel as a unique platform to increase public awareness of the important role of caregiving.

The author of "How to Care for Your Parents: A Practical Guide to Eldercare" (4th edition), WW Norton (1997), Levin has written, spoken and consulted on eldercare issues for almost 25 years. In 2001, she was nominated for the Rosalynn Carter Caregiving Award as an "exceptional eldercare pioneer and consumer advocate for contributions focusing on family needs for better access to eldercare information and services."

Ms. Levin describes the tools available through “Caring from a Distance” to help families organize care for their loved one, including checklists, a library, and new technology tools that make information available to caregivers, medical staff and family members. In this session, we explored various scenarios that families frequently confront and solutions to manage the challenges.

Presentation Links (*some links no longer available)

• Howard Gleckman blog
• Caring From A Distance “What To Do Checklist”*
• Action items to help distance caregivers get organized*
• United Hospital Fund Next Step in Care site with checklists and guides from everything from transition of care to best way to help at doctor visits.
• To order bulk orders of the free pamphlet, Frankly Speaking about Cancer; Support from a Distance, click the link and go to Caregiver section
• Gaining access to Medicare/ VA health records via Blue Button. Access, add personal information and share vital information.
• IBlueButton apps* - to get and share records from multiple sources using scan codes
• ICEBlueButton - In Case of Emergency view a record with important health information

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Knocking on Heaven’s Door: the Path to a Better Way of Death

Speaker: Katy Butler - 

Katy Butler's memoir, "Knocking on Heaven's Door", was named "One of the Ten Best Memoirs of 2013" by Publishers Weekly as well as one of the “100 Notable Books of 2013” by the New York Times. It most recently won the “Books for A Better Life Award”

Her memoir chronicles the last 8 years of her parents' lives, as Katy was her parents' part-time caregiver and full-time medical advocate. Her ground breaking book explores her struggle to allow her parents the "Good Deaths" they wanted, and the forces within medicine that stood in the way. Its provocative thesis is that modern medicine, in its quest for maximum longevity, often creates more suffering than it prevents.

Her many essays and articles, often blending memoir and investigative reporting, have appeared in The Wall Street Journal, The New Yorker, The New York Times Magazine, Best American Essays, Best American Science Writing, and Best Buddhist Writing.

Accompanying presentation slides (10 MB PDF)

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What Health Advocates Need to Know about Improving Care and Expanding Choices at End of Life

Speaker: David C. Leven - 

Since 2002, David C. Leven has been the executive director of Compassion & Choices of New York, an organization working to improve care and expand choices at end-of-life. He is a graduate of the University of Rochester and Syracuse University College of Law. An advocate for patients and an expert on advance care planning, patient rights, palliative care, and end-of-life issues, Mr. Leven plays a leadership role in having healthcare legislation introduced and enacted in New York. Improvements in pain management and palliative care options have resulted from Mr. Leven's legislative work, as well as an increase in the numbers of people with completed healthcare proxies.

Mr. Leven lectures frequently to diverse professional groups, students, and citizens of all ages. He is also a regular guest lecturer at College of New Rochelle School of Nursing and Fordham Graduate School of Social Service.

A component of NAHAC’s mission is to support public education and foster effective self-advocacy. During this teleconference Mr. Leven will covers the following topics:

• The fundamentals of advance care planning
• Protecting patient autonomy at end of life
• Palliative care and end-of-life issues

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What Health Advocates Need to Know About Conservatorships

Speaker: Melinda Hunsaker -

Melinda Hunsaker is a Managing Partner at McGonigle & Hunsaker, LLP. Her practice includes Medi-Cal Planning, Applications, and Appeals, Estate Planning and Trust Administration, including Special Needs Trusts, Probate, Conservatorships, Guardianships, and other Elder Law related matters. Ms. Hunsaker received her law degree from Western State University, College of Law, graduating cum laude in December of 2005, and was admitted to the California State Bar in May of 2006.

Ms. Hunsaker is a member of the Orange County Bar Association (OCBA) Trust & Estates section and the OCBA Elder Law section, as well as a member of the J. Reuben Clark Law Society. Ms. Hunsaker is a regular presenter at "Transition Night" for the North Orange County Community College District, School of Continuing Education, for the developmentally disabled and their families. Ms. Hunsaker is also a regular volunteer at the Orange County Probate Court's free Limited Conservatorship Clinic and has been published in the Orange County Lawyer. Ms. Hunsaker frequently gives presentations throughout Southern California to churches, schools and community organizations for seniors, people with special needs, and their families as well as provide training to attorneys and other professionals, hospitals, and skilled nursing facilities.

Ms. Hunsaker’s article that published in the Orange County Lawyer on this topic.

A component of NAHAC’s mission is to support public education and foster effective self-advocacy. During this teleconference session Ms. Hunsaker covered the following topics:

• The fundamentals about how conservators work
• How to recognize when conservatorship may be needed
• Communication tips for addressing this topic with clients

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Aging in Place and the Village Movement

Speaker: Lois Steinberg - 

Lois Steinberg is the president and co-founder of the Center for Aging in Place, an affiliate of the Village to Village network, which is expanding the "Village Movement" throughout Westchester County in New York. She is the founding director of the Medicare Rights Center's Westchester programs where she conducted the award-winning Seniors Out Speaking on Medicare (SOS Medicare) program. Her previous careers include policy and marketing research, public relations, and educational advocacy.

 A component of NAHAC’s mission is to support public education and foster effective self-advocacy.   During this teleconference session Lois addressed the following topics:

• The Aging in Place, Village to Village movement is an emerging and popular grassroots development to help those who wish to remain in their homes as they age.
• Each "village" determines the services to be offered, structuring membership dues accordingly.
• Active, committed volunteers are key to the success of aging-in-place. Transportation service is nearly always a priority, and one with which volunteers can provide much support.
• Established villages have learned that they need an administrative director, at least on a part-time basis.
• The aging-in-place movement represents significant growth potential for healthcare advocates.

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