The Blog to Transform Advanced Care

Advancing Care through Innovation, Observation and Collaboration.

Forty-three years ago – before Medicare funded hospice as a benefit, before for-profit and non-profit hospice organizations proliferated through the country – a small organization in North Carolina tried to do what it could to make what was available to people in the last stages of life, better.

What is now called The Carolinas Center cobbled together grants and volunteers to figure out models that worked to minimize physical and emotional pain.  It fought for government funding to bring hospice care to people who needed it.

The organization expanded its mission by merging with a similar one in South Carolina, where the needs were the same.

“So, fast forward, here we are, we’re still in the trenches, advocating for the needs of providers, clinicians and consumers who are engaged in the care of those living with a serious illness,” says Marisette Hasan, The Carolinas Center’s president and CEO.

But today, The Carolinas Center (TCC) has catapulted to the Cloud, bringing Carolinians – prospectively in the future any adult within the U.S.– a first-of-its-kind innovation to ensure their wishes for their end-of-life care are known and administered.

“We’re just scratching the surface,” Hasan says.  “There’s so much opportunity to raise awareness and to educate our communities on the resources that are available to support patients and caregivers to ensure they can get the right care when they need it the most.”

The Carolinas Center doesn’t provide hospice or palliative care services but is instrumental in assisting organizations that promote care and planning for people in the later stages of life.  It offers training and technical assistance and regulatory and legislative advocacy to more than 50 hospice and palliative care provider members and other organizational community stakeholders, across the Carolinas.

A challenge for these members is the stubbornly low percentage of people who create Advance Directives (the legally-binding document that expresses the nature and type of care they want at the end of their life), and, who actually receive that care.

“We saw this was a problem, especially for aligning people’s wishes when they can’t speak for themselves,” says David Sevier, developer of a Duke Endowment-funded project to change this situation. “Our research shows 35 to 40 percent of all adults have created an Advance Directive that ends someplace inaccessible, when needed.”  

Carol Meyer, The Carolina Center’s former CEO, along with Sevier and his spouse, a TCC board member, oncology nurse and former cancer center administrator, envisioned a way that technology might address these problems.

The momentum started three years ago with a $1.1 million Duke Endowment Grant to create a cloud-based, online platform to plan and upload Advance Directives at an individual’s request.

“We believe this represents the first time that these documents will be transferred directly from the individual to their electronic health record (EHR),” says Sevier. “Until a directive is uploaded to the health system, it’s outside the (privacy restrictions of the) HIPAA wall.  Then, once you indicate you want to upload it and make it available to your provider, it gets transferred to a health system’s EHR.”

The platform, called Mind My Health, is available to users in the Carolinas through its website: www.mindmyhealth.org. Developers envision the system to be much more widespread in the future.

“Our goal is for people’s care to be aligned to their wishes much more clearly than in the past,” Sevier says.

“It’s a platform for people 18 and older, not just for those who are seriously ill, but healthy folks who need to be shepherding their own health and figuring out what their values are and what they want done,” says Hasan.  “That could be a 20-year-old who’s going to college, or it could be a 40-year-old person diagnosed with a life-limiting illness that could really change the dynamics of their family.”

Once a person fills out an Advance Directive, meets the necessary legal requirements (North Carolina requires two unrelated witnesses, plus a notary) and uploads the hard copy document through Mind My Health, the platform enables them to also email the document to their loved ones or advocate.

Their end-of-life wishes are therefore readily accessible to those who need to know this information at the moment when it’s most needed, rather than being inaccessible, behind lock and key.

“A major concern is if somebody shows up at the E.R., perhaps unconscious from a traffic accident, and somebody asks the question ‘Do they have an Advance Directive?’” Sevier says. “It’s often not accessible, because nobody knows where to look for it.”

This game-changing development in advance care planning emanated from North and South Carolina but will hopefully proliferate further through Internet access via mindmyhealth.org.  Still, its current capability does not yet fully offer the technology’s potential, nor does it reconcile deeply entrenched cultural barriers. 

These are the surfaces which Hasan says The Carolinas Center is starting to scratch.

Technologically, TCC is partnering first with Cone Health, a Greensboro, N.C.-based health system, to interface Advance Directives which Cone patients may upload via Mind My Health. When a Cone clinician accesses the patient’s EHR, a banner note will reveal the patient’s Advance Directive.  One by one, The Carolinas Center plans to integrate this capability within as many health systems as possible.

Culturally, it’s aiming to use other grant dollars to boost advance care planning education and activity in diverse populations where discussing and sharing such information is more challenging. This will involve teaching clinicians and community leaders to initiate the conversation, and to also launch a multi-tiered education and outreach plan to encourage the use of Advance Directives.

“Folks who haven’t had opportunity to talk through what matters to them usually don’t have the kind of ending that they want,” Hasan says. “It’s often filled with regret, where people sit in ICU waiting rooms without the quality of time with the dying person they would have wanted because there wasn’t a discussion earlier.” 

The Carolinas Center has engaged its expansive network within its two-state domain to promote Mind My Health.  The technology is new, but what drives the movement is as old as The Carolinas Center itself.

“We’re all about being a connector for people,” Hasan says. “When the synergy and the connection is right, the mission aligns, and we can make a difference in people’s lives.”

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