April 21, 2024

Healt Hid

Because health is very important to us

What I learned when I tried a video service to document my advance directive.

7 min read

It’s 10 a.m. on a Tuesday, and I’m preparing to discuss my death. Well, not exactly. More like what happens in the case of a health condition or medical emergency that could result in my death. And as someone who shivers when asked what happens when we die, the idea of contemplating my mortality with anyone—especially a stranger—is nerve-racking.

I’m getting a preview of MIDEO, a platform where, for between $99 and $349 (plus a $9.99 annual membership), patients can record video-based advance-care plans in consultation with a physician. Advance-care plans (also known as directives) are legal documents that instruct medical professionals what to do if you can’t communicate your wishes during a medical emergency. I don’t have any preexisting conditions that make my death imminent, but the platform encourages advance-care planning at all stages of life.

According to MIDEO founder Ferdinando Mirarchi, a doctor specialized in emergency care, the idea for the platform came out of his own failures in medicine. “Simply put, I screwed up,” he told me on a phone call back in December. One night, as an intern working the ICU, he ran to treat a woman going into cardiac arrest. But a nurse waved a paper in front of him, insisting that it was a do-not-resuscitate order. In reality, it was an advance directive instructing doctors to do anything they could to bring her back to life.

“It completely paralyzed me,” Mirarchi said. Luckily, a cardiologist happened to be walking by. “He saw what happened, he literally pushed me away, took an old-fashioned paddle, shocked her chest. She woke up and talked with us,” he said. “We treated her heart attack, and she went home. If it was me alone there, she’d be dead.” Later, during his residency, Mirarchi put a man in his 60s on life support, only to be told 30 minutes later by the man’s wife that he was a hospice patient. “I saw both ends of the spectrum and how I made mistakes,” Mirarchi said. “It stuck with me. If I was making those mistakes, others were also making those mistakes.”

Research has reached similar conclusions about physicians, families, and surrogates misinterpreting patients’ wishes. In a recent study, researchers found that almost half of the 363 patients they looked at received treatment that didn’t align with their surrogates’ goals for care; they pointed toward poor communication as a reason for the discrepancy. “Everybody called it a confusion,” Mirarchi said, recalling his own medical practice. “But these aren’t confusions. These are medical errors, and they result in death.”

There are sort of two levels of problems when it comes to advance-care planning. The first is a numbers game—trying to increase the population of people who have documented their care preferences. A 2017 meta-analysis looking at nearly 800,000 Americans found that only 36.7 percent had an advance directive. This number has plenty of caveats: 80.6 percent of people in the sample were 65 and older and 62.7 percent were in a nursing home, and whether you’re likely to have an advance directive depends a lot on your age and health. Medicare also didn’t start reimbursing physicians for advance-care planning until 2016; uptake may have increased since then.

But even if we were able to increase the number of people with documented care plans, then we would still face a host of problems in ensuring that those plans are equitably and accurately carried out. Research suggests that patients leave advance-planning sessions with misconceptions about life-sustaining treatment: For example, one study found that after discussions with a doctor, 66 percent of patients did not clearly understand that they might need mechanical ventilation after undergoing CPR. The researchers noted that one of the study’s most “disconcerting findings … was that patients expressed strong preferences about treatments that they did not understand.”

Advance-care planning can also be driven by financial pressures and is marked by racial disparities—for instance, research shows that Black and Hispanic Americans are less likely to have advance-care directives. When patients do have them, directives are not always stored in electronic health records and may be hard for doctors to interpret, especially under pressure. Others question whether advance-care planning should exist in the first place, pointing out that some research shows that it doesn’t reliably improve end-of-life care.

Still, there are several efforts, like MIDEO, trying to address these issues and streamline advance directives. Caring Advocates is a program specifically for those who have dementia or Alzheimer’s. PREPARE provides free digital advance-care materials. There are also other pushes to digitize advance directives, and platforms like MyDirectives can store videos. Apple’s Health App has a place to store directives, and anyone can use their phone to record a video outlining how they want to be treated.

MIDEO is the first advance-care service I’ve explored, and to prepare my own video, I log into the company’s telehealth platform, where I’m met by Mirarchi. I also download an app on my phone, which is what MIDEO customers use to actually develop their directives. A health care professional like Mirarchi is on the line to walk them through the process.

Mirarchi starts by reminding me that because I’m young and 99 percent of patients my age are healthy, my experience is going to be a lot different from that of, say, an 80-year-old man with comorbidities. My session is tailored around cardiac arrest—the most likely culprit for unconsciousness because of my age and lack of other ailments; other patients might receive more specific disease planning or medical advice. Mirarchi then launches into a series of questions about what plans I already have in place—whether I have a will (I don’t think so) or a health care power of attorney (also don’t think so). He explains the two types of cardiac arrest—witnessed and unwitnessed—and gives recommendations accordingly: Given that I’m healthy, if I go into cardiac arrest and there are witnesses, I likely want people to do anything they can to resuscitate me. In the case of an unwitnessed cardiac arrest, CPR likely wouldn’t be beneficial. (By the time someone found me, my heart probably would have been stopped for too long.) But he doesn’t want to be paternalistic. “It has to be your decision,” he says. I select my options on the app and move on to the recording portion of the process.

There’s an instruction and sample video, recorded by Mirarchi himself, to give me a sense of what I should do. On the telehealth platform, the real Mirarchi acknowledges that this part is tough—many people don’t like to talk about death. He suggests a reframe: It’s about telling a story about how you want to be treated.

It takes about two minutes to record my own video; the options I selected are projected on screen as it runs. “My emergency treatment choice is full code and the provision of CPR and [advanced cardiac life support] if my cardiac arrest is witnessed,” I recite. “If my cardiac arrest is unwitnessed, with a perceived prolonged downtime and signs of death, there is to be No Trial of CPR.” I reiterate that I want doctors to follow all emergency protocols in the case of things like stroke or sepsis, and I list my dad as my health care agent.

Once recorded, videos are processed by MIDEO; it stores them in a database, then creates a QR code for easy access, which it prints on ID cards and magnets. (Paramedics are trained to look for advance directives on fridges.) The ID cards and magnets include a quick reference guide to patient preferences (e.g., “Code Status: Full Code”). Letters with directives are sent to primary care physicians, local hospital/medical record departments, estate attorneys, and (when available) state registries.

All of these steps nod toward one of the most glaring challenges for advance-care planning efforts: making people aware they exist. Many paramedics check wallets or fridges for advance-care directives; other bystanders, not so much. And there are lots of other barriers—although Medicare covers voluntary advance-care planning, costs can add up for some patients. Tech-based planning efforts also face accessibility issues. And then there’s the more fundamental questions: When it comes down to split-second decisionmaking, will a health care provider have the time and wherewithal to consult an advance directive? Will it answer the question they need it to?

On a macro level, I’m not sure. But going through the advance-care planning process forced me to ask myself a lot of questions I’d never explored before. It also opened up conversations with family—who were unclear if I had a health care power of attorney—and friends, one of whom virtually signed my advance-care directive as a witness. Because I’m young and healthy, Mirarchi says, I won’t have to think about all this again for another five years, at which point he suggests I revisit my plan to make sure it’s still accurate. I don’t know if my decisions will change in that time. But now at least I know I’ll feel OK discussing them.


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