April is South Carolina Health Care Decisions Month, a yearly celebration of the importance of examining your own values, decisions and documents surrounding end-of-life care.
Here at the South Carolina Hospital Association (SCHA), we’ve worked hard to be leaders on this important issue. SCHA President and CEO Thornton Kirby and Vice President of Accreditation and Risk Management Karen Reeves recently recalled collaborating on an educational video SCHA produced following the enactment of the 1990 Patient Self-Determination Act. Kirby, then a young healthcare attorney, was providing legal guidance as South Carolina hospitals took their first steps in providing patients with education about advance directives (now referred to as Advance Care Planning or ACP documents); honoring patients’ end-of-life wishes; and conducting community education about ACP.
“I was just out of law school at the time, but I quickly developed a passion for Advance Care Planning,” says Kirby. “When you see the emotional toll it puts on families grappling with such difficult decisions in the absence of any knowledge or guidance of a person’s wishes, the importance of clearly articulating your desires and having written, actionable documents that guide that process becomes undeniable.”
For years, it has been estimated that less than 30% of the population have an advance directive, with those numbers not shifting much from year to year. Recent surveys indicate that only 32.7% of healthy adults in the United States have any ACP documents (including a healthcare power of attorney or living will), and just 38.2% of persons with chronic illnesses have an ACP document.
It is surprising, yet understandable, that more progress has not been made. As a society, we are simply not comfortable talking about end-of-life scenarios. This aversion—aided by the bounty of so many new treatment advances, the constant stream of new medications and other innovative technologies that can improve and extend life—has created an action mindset in the healthcare field. Both caregivers and patients think about what healthcare can do, not what it can’t do.
Even our own employees are not immune from this prevailing attitude. Our 2018 data indicates that only 43.6% of SCHA employees have an ACP document. This is especially surprising since SCHA has an incentive program in place for employees to receive discounts on their health insurance premium by participating in a variety of optional healthcare and fitness practices, several of which are related to end-of-life documents. SCHA continues to explore what barriers exist for its own employees in an effort to improve participation rates, but a key takeaway from these results is the importance of continuing regular education and reminders about the importance of ACP.
For many years, one of the primary drivers for this issue has been National Healthcare Decisions Day and SC Health Care Decisions Day (NHDD/SCHDD), held each April. This year, our work is being rebranded as South Carolina Health Care Decisions Month (HCDM), extending activities and efforts even further for four weeks of advocacy. The initial HCDM activity will take place thanks to My Life My Choices, an Advance Care Planning initiative undertaken by the Coalition for the Care of the Seriously Ill (CSI), of which SCHA is a key member of. Their newly-released 2019 SC Health Care Decisions Action Guide is now available at the My Life My Choices website and provides tools to help healthcare organizations and businesses promote ACP by celebrating HCDM.
One of the key messages about Advance Care Planning and HCDM is to lead by example. If you have not already examined your values and had these difficult conversations with your loved ones in order to craft your ACP documents, it can be hard to understand just how uncomfortable this process is. It is difficult to motivate others if you have not already gone through this process yourself.
At SCHA, Kirby and Reeves recently reviewed some of the key points of ACP with staff. They talked about everything from how to select your healthcare agent (it should be someone who can make sure the healthcare system follows your wishes) to the different kinds of ACP documents and what their limitations and benefits are, emphasizing that most health care attorneys, as well as the SC Bar Association, recommend the SC Health Care Power over a living will.
SCHA plans to lead by example this April for HCDM and throughout the year by keeping Advance Care Planning on the agenda for both our employees and South Carolina, and we ask healthcare organizations throughout our state to join us.
For more information on HCDM, head to the My Life Choices website here.