By Marian Grant
The COVID-19 pandemic has laid bare the importance of clearly expressing personal wishes for medical care in emergency situations.
Health systems and providers across the country are seeing how important it is that all of us discuss our medical goals in advance. Not having one’s medical goals known in advance puts a burden on frontline clinicians and loved ones, because it leaves important medical decisions up to them.
You can and should speak up about the kind of medical care you would want, and tell doctors what matters to you. You also should tell those who matter most to you what you’d want if you couldn’t make decisions for yourself.
The best way to do that is by picking someone you trust, and a back-up person to be safe, to speak for you. Talk with them now about what you’d want if you got too sick to speak for yourself. Once you’ve had that conversation, tell those who matter most to you who you picked. That way they’ll know in an emergency. And tell your doctor or health care provider. This process is usually called Advance Care Planning (ACP), but right now it’s more about Preparation Planning.
As this health crisis continues, policymakers have taken steps to help communities and those who are ill. Some of the most helpful have been increasing access to telehealth. These have resulted in a boom in virtual care.
The Center for Medicare and Medicaid Services (CMS) now allows ACP conversations via telehealth and, most recently, by audio-only technology, like telephones. Previously, those conversations had to involve both audio and video technology, like Facetime or Zoom. But video requirements limited access to advance care planning, especially among underserved groups who already don’t typically engage in ACP. Allowing audio-only ACP conversations via telephone addresses one of the disparities highlighted by this pandemic.
Despite these positive policy changes, and a wider understanding of ACP’s benefits, additional policy barriers still make it hard for people to have these conversations. Since ACP can help individuals and those who matter most to them have more peace of mind and ensure that care received aligns with the individual’s values, additional policy changes are needed:
- Expand the types of clinicians who can charge for these conversations. Currently, only physicians, nurse practitioners, and physician assistants can be paid for having ACP conversations. There simply aren’t enough of them to have these conversations, while others on medical teams could have them as well. Specifically, it makes sense to add clinical social workers and nurse case managers to those who could be reimbursed for ACP conversations. (There are more team members than that, but we have to start somewhere!)
- Remove copay, cost-sharing and deductible payments. Currently, most ACP conversations have cost-sharing, copay, and/or deductible costs that patients have to pay. Some can be charged up to $50-70 for a conversation about their treatment wishes. With the financial crisis this pandemic has caused, cost-related barriers to ACP services must be removed. That’s especially true for older Americans and others most at risk for COVID-19. We need to make sure cost isn’t why these important conversations don’t happen.
- Make sure ACP documents are honored across state lines. At present, ACP documents, such as advance directives, are issued by state and not always legally enforceable across state lines. Making sure someone’s ACP document is valid wherever they go is important, especially during the COVID-19 emergency. The current lack of state-to-state transferability of ACP documents should be fixed to ensure that a person’s medical preferences go wherever they go.
To learn more about this topic and its policy implications, please join us for the upcoming Petrie Flom webinar on July 8th from 12-1:15 pm EDT, Advance Care Planning in the Age of COVID: Lessons Learned and Policy Implications.
ACP was also a topic during C-TAC’s recent Second National Policy Forum, now available online by clicking here.
For information on ACP for yourself or someone who matters to you, go to the Respecting Choices website.
Marian Grant, DNP, CRNP, ACHPN, FPCN, RN is Senior Regulatory Advisor for The Coalition to Transform Advanced Care and adjunct faculty at the Johns Hopkins and University of Maryland Schools of Nursing.