By Mary Butler
The documentation detailing a person’s wishes for the care they receive at the end of their life is amongst the most sensitive data that health information management (HIM) professionals will ever handle. But for the providers that use that data to make life or death decisions, those records are frequently incomplete, contradictory, or missing entirely. In a pandemic where patients are making decisions isolated from their families and advocates, healthcare professionals are looking at advance care planning (ACP) documentation with new urgency.
This urgency has compelled healthcare organizations to take a more proactive approach to ensuring ACP documentation is as accessible and accurate as possible, whether that means partnering with a vendor or manually reviewing all of the documentation currently on file. HIM professionals have long had ownership over where ACP documentation is stored and how it’s shared, which makes them integral in these efforts. Their expertise around the many types of documentation in this category—which includes advance directives, do-not-resuscitate orders, living wills, durable power of attorney, and medical orders of life sustaining treatment (MOLST) forms—has made HIM a critical part of organizations’ COVID-19 pandemic response.
Over the last several years, as the Affordable Care Act and other reforms began to prioritize ACP, vendors have developed electronic registries and interoperable technologies to make this type of care planning more seamless. Those vendors have seen demand for their solutions skyrocket as at-risk individuals and providers have grappled with a new disease that has required patients to be intubated or put on ventilators at unprecedented levels. While COVID-19 is testing the American healthcare system in new ways every day, it’s also hastening conversations that have been on the backburner for too long.
Prioritizing High-Risk Patients
In response to the high volume of critical COVID-19 patients in Boston, MA, Partners Healthcare turned to its HIM department for help figuring out the healthcare proxy status of patients with a higher risk of contracting COVID-19. The electronic health record (EHR) system that Partners uses has an ACP module where all of a given patient’s documents reside. When Partners started treating a lot of COVID-19 patients, its palliative care and critical illness team started to find that many patients had two healthcare proxies listed—or they had no proxy listed at all, according to Jackie Raymond, RHIA, director, enterprise HIM, at Partners Healthcare. In ACP, a healthcare proxy is the document that names the person or “agent” responsible for making healthcare decisions on the patient’s behalf.
Raymond says her HIM team was asked to complete an analysis on the proxy status of these at-risk patients to find the current state of the landscape. Once that was finished, they were asked to do a cleanup on all of the accounts that had more than one proxy listed. Raymond and Shanda Brown, senior manager of business services, worked with Partners clinical teams to identify which patients were high risk.
“We’ve worked through those first and then we sort of stratified medium-risk, low-risk, and we’re working through those queues. And we’ll get through as many as we can during the crisis and then from a HIM perspective, we’ll look at what’s left when we get out of this crisis and figure out how we’re going to finish cleaning up the rest of them. This project is sort of a hybrid of taking something that we were currently doing and expanding the scope of it,” Raymond said.
Concurrent to HIM’s task to update patients’ proxy status, clinicians who are a part of Partners’ serious illness team are also prioritizing the collection of MOLST forms, which in Massachusetts is a document based on an individual’s right to accept or refuse medical treatment, including treatments that might extend life. Given that patients with COVID-19 can deteriorate rapidly, clinicians treating them must walk a fine line in preparing them for difficult end-of-life care conversations without frightening them.
“The one thing that actually has happened with this is, at least across Partners, they created a subgroup that has really just focused on having these conversations and have created like a consultant line to say, ‘If you do need to have a serious illness conversation, call this number,’” Raymond said. “…Sometimes there’s a concern about having the conversation too soon and making things a little worse emotionally for the patients and their families.”
Raymond and Brown both acknowledge that in the absence of a vaccine for COVID-19, the efforts they’re making to ensure ACP documentation is complete is going to be a priority for a long time.
“It’s certainly highlighted, it certainly highlighted the importance of these documents and our role in it is just so much more important now that we’re able to help with this project,” Brown said.
Online Registries Bring Peace of Mind
In response to the COVID-19 pandemic, online registries for ACP documentation are gaining traction. Care Directives and ADVault are two such registries that providers can partner with, or which patients and their family members can access directly to store advance directives, living wills, POLST/MOLST forms, and other related documents.
Susie Flores, CEO of Care Directives, first experienced ACP when she worked in hospitals as a social worker and saw the turmoil that could arise when advance directives were misplaced or lost in patients’ homes or when the documents didn’t follow a patient from one care setting to another. Flores hears from providers who readily admit their own EHRs make these documents hard to track.
“Just this morning we had a large healthcare system that said ‘We can’t find our own documents let alone share them.’ That obviously presents a big challenge—forget sharing them with the nursing home down the street or physician who’s seeing the patient,” Flores said.
Care Directives created a patient-facing portal where patients themselves can upload ACP documents, as well as a cloud-based registry to which providers can subscribe that leverages existing data exchange standards, such as Carequality, Commonwell, Direct Trust, FHIR, HL7, and APIs.
Jhyl Mumford, RN, VP of clinical operations at Butterfly Hospice Care in Upland, CA, says the adoption of online registries for these documents has been a gamechanger in the hospice world, where patients are admitted from numerous types of settings, such as hospitals, their homes, assisted living, and skilled nursing facilities. When patients are admitted from their homes, hospice staff and EMS workers are trained to check the patient’s refrigerator, where key documents are frequently kept so as to be in plain sight.
“The problem is they get misplaced, grandkids take them off, they never get put there. Because it touches so many hands it can be a long process before we get a document that’s signed and that’s uploaded to the patient’s chart,” Mumford said.
Having documents that are stored online and accessible to hospice staff and to patients’ families helps to ensure everyone is on the same page when decisions need to be made, according to Mumford.
Maria D. Moen is a member of AHIMA’s long-term and post-acute care practice council and is the director of platform innovation at ADVault, a platform that allows individuals to upload or create, store, and share their advance directives, advance care plans, and portable medical orders. Moen sees platforms and services such as ADVault and Care Directives as fulfilling the goals of providing patient-centered care through innovation and technology. That’s even more important during a pandemic.
“So, whether it’s end-of-life or just a normal emergency or health crisis, having your decisions and priorities and goals documented is more important than it ever was,” Moen said. “Certainly, it’s important at end-of-life. We deserve to have our end-of-life be on the same terms that we’ve lived our lives. And so I definitely think it’s brought advanced care planning and end-of-life … to the forefront.
“I look at some of the seniors that we work with, and they are perfectly able to speak their mind. They are not currently in a health crisis. And the question is, if you are suspected to have become ill with the coronavirus and you may not be able to speak for yourself at that point in time, what do you want your healthcare journey to look like? And because it is so real and is so omnipresent, I think perfectly lucid [and] healthy seniors are saying, ‘Yeah, you know what? That could happen to me, so let me just document this.’”
Mary Butler ([email protected]) is senior editor at the Journal of AHIMA.
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