Compassion and Support
APRIL 2017
Upstate New York Survey Reveals Gap Between Knowledge and Action

Nearly 9 out of 10 upstate New York adults are aware of the term, “health care proxy” (HCP), according to a new survey commissioned by Excellus BlueCross BlueShield. Among those who had heard the term, 89% know that it is a way to legally designate someone as your health care agent to represent you during a medical crisis in the event that you can’t speak for yourself.

Despite high awareness and knowledge of the HCP term, our survey revealed that only about 4 of 10 upstate NY adults have completed a health care proxy form. That’s disappointing, because so many people have had the experience of making gut-wrenching health care decisions for loved ones who were unable to communicate.

Excellus BCBS’s online survey regarding end-of-life care was administered by the polling firm One Research. 2,000 participants completed the survey. A county-level quota sampling method was used to ensure that it would be a representative sample of the region’s U.S. Census Bureau demographic profile.

When you select a health care agent, ideally it’s a person who knows your values, beliefs and goals for medical care. Your health care agent should be able to step into your shoes and choose interventions based on what matters most to you, and not what they would want for themselves.

Sharing your values, beliefs and goals for medical interventions and completing a health care proxy form are crucial to the advance care planning process. Filling out a HCP form legally documents your care wishes, and sharing your wishes ensures that your health care agent and other family members are aware of the proxy and its details. Among those surveyed who had not completed a health care proxy, more than half also had not shared their wishes with family and others.

About a third of survey respondents see the need to fill out a HCP, but have not completed a form. Being aware, and understanding the value, of a health care proxy is important, but unless you take the time to fill out the form, your wishes may not be carried out.

Age was a factor when it came to knowledge of the “health care proxy” term: 98% of respondents age 65 and older reported knowing the term, compared to 61% of survey respondents ages 18- to 24.

Other findings from the survey include:
• HCP awareness, knowledge and importance of completing the form were significantly higher among women than men.
• Respondents currently taking a prescription medication for a chronic condition had higher health care proxy awareness, knowledge and completion, compared with those not taking a prescription.

A free step-by-step booklet and discussion guide on advance care planning, including the HCP form, is available for download at Complete results of Excellus BCBS’s end-of-life survey establish a benchmark for awareness and completion of the HCP among upstate New York adults.

Featured Resource:
Lucia’s Story

Lucia’s Story and PSA highlight why you’re never too young to complete a health care proxy because “you just never know.” The PSA is available in English and Spanish.

CompassionAndSupport’s YouTube channel contains these clips and a number of other video resources that can easily be used to support community education.

Learn more about the Five Easy Steps of advance care planning, including how to choose the right health care agent who will serve as your spokesperson if you lose capacity. Discover how to record your values statement and the importance of the conversation.

MOLST FAQ: Why Should Young People Complete a Health Care Proxy?

Anyone can suffer an acute illness or injury that results in the loss of capacity or the inability to make decisions.

Capacity is the ability to take in information, understand its meaning and make an informed decision using the information. Capacity is task specific. A health care proxy ONLY goes into effect if a person loses capacity.

That’s why everyone 18 and older should have a conversation about what matters most and complete a health care proxy.

eMOLST Champion:
Katie Orem, MPH

By Pat Bomba, MD, MACP

Katie Orem, MPH, has been the eMOLST administrator since the launch of the eMOLST system in late 2011. Katie has been responsible for transforming the eMOLST administrative system to ensure the application is scaleable and that tens of thousands of users and patients across NYS can be managed by one eMOLST administrator. This model has allowed the organization to control costs while supporting a robust eMOLST system that functions statewide.

In addition to conceptualizing a new approach to administering the eMOLST system, Katie has worked to improve the user experience. She keeps a pulse on our users, streamlining the eMOLST application and ensuring that we are responsive to user feedback. Katie does eMOLST education and training for providers, organizations, HIPAA Entity Administrators and internal representatives involved with the system.

With the integration of eMOLST as an option for our health plan’s hospital performance incentive program (HPIP) Katie has increasingly spent time onboarding organizations with the eMOLST system. This is an intensive process as considering implementing eMOLST requires organizations to take a critical look at their existing process for end-of-life discussions and completion of orders to withhold/withdraw life-sustaining treatment. The eMOLST system is the best tool available to guide this process, but it alone will not change entrenched organizational culture surrounding end-of-life care. We look forward to sharing more with you next month about the focus HPIP and eMOLST have brought to improving this process at several organizations across upstate NY.

Conversations Change Lives.
Start Your Conversation Today!

April 16, 2017 is the 10th anniversary of National Healthcare Decisions Day (NHDD). NHDD is a time when people across the country are encouraged to speak with their families about personal values, beliefs and what matters most to them, to designate a health care agent, and to complete a health care proxy form (known in some states as a durable power of attorney for health care). NHDD is a call to action. To celebrate the 10th anniversary, NHDD events will be held throughout the week.

“It always seems too early, until it’s too late.” JoAnn unfortunately knows this & was willing to share her family story with us in 2007. JoAnn’s story & PSA align with this year’s NHDD theme.

Who: You, your family & loved ones. Everyone 18 years of age & older!
What: Speak with your husband, your wife, your loved ones & your doctor about your values, beliefs & what is important to you.
Where: Your home, around the kitchen table or wherever your family gathers.
When: April 16 (NHDD) or any time your family gathers, like my family’s annual Thanksgiving tradition!
Why: Anyone can face acute illness or injury & lose the ability to make medical decisions. Starting ACP discussions early will ensure your care is directed by someone you trust to make decisions for you. Early conversation provides peace of mind for your loved ones.
How: Real stories can help start the conversation. Share your story or use the Advance Care Planning videos on our YouTube channel.

Start Your Conversation Today: Read about the difference between advance directives & medical orders. Review the Advance Care Planning resources on Check out ReachMD’s podcast series on the 2014 Dying in America report, & review Conversation Resources that align with the report. Share resources with family & friends.
Raise Awareness Through Social Media: Follow @PatBombaMD, @KatieGOrem & @MOLSTMeg on Twitter. Use #NHDD & #NHDDNY in your messages. Like CompassionAndSupport on Facebook & encourage friends to do so.
Join the NHDD Coalition: While NHDD is just 1 day, the coalition works year-round to promote the value of advance care planning, health care proxies & MOLST. If you live in NYS & are interested in sharing your skills & expertise while growing professionally & creating sustainable community education on advance care planning, please join the NHDD NYS Coalition by contacting Meg Greco today!

Thank you for your support of NHDD! Please forward this update to colleagues, family & friends.

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