The right words matter when talking about advance directives

We are being told to do a lot of things these days: Wash your hands. Don’t touch your face. Wear a mask outside. Stock the house with two weeks of food. Dust off your will. And make sure to complete your advance directive and talk to the people who matter in your life about your wishes for end-of-life care.

I lead a statewide coalition in Massachusetts dedicated to improving care for people facing serious illnesses through better communication, so you might think I’d be thrilled with the spotlight on end-of-life care discussions. As many writers have noted, most Americans think these conversations are important, but few of us have actually had them. There’s nothing like a deadly pandemic to point out what we should have been doing all along.

But landmark research that my organization, the Massachusetts Coalition for Serious Illness Care, completed last year suggests that we must tread carefully with these discussions. We need to be mindful of the many ways people currently understand this overarching process of advance care planning and how our understanding of advance directives is likely shifting in light of the barrage of headlines about Covid-19.

Above all, we must recognize that creating anxiety over the pressure to prepare for things we ultimately can’t control can harm people.

In partnership with the Cambia Health Foundation, our coalition completed a multiphase research project to find new language and approaches to encourage people to talk about what matters most to their quality of life and the kind of care they want if they become seriously ill. We began by unpacking individuals’ attitudes toward health care and their goals, values, and preferences. To get this information, we conducted a national survey of thousands of people, followed by in-depth engagement with hundreds.

Some of our discoveries were surprising. For example, many respondents had strong reactions to language commonly used to encourage completing advance directives. Those who were single or estranged from their families often felt alienated by the term “loved ones.” Others were put off by the idea that advance care planning is “a gift” that can “ease the burdens” of those who must make decisions about someone else’s care. This reaction was particularly strong for those with lower incomes. That makes sense: Merely talking about what you want without the financial means to see it through feels like a hollow promise.

The survey found that some people had done advance care planning from a place of confidence and calm, wanting to ensure that quality of life was the driving factor for future decisions. Others, notably people with disabilities, did it from a place of anxiety, often after having seen a family member’s death go poorly, and wanting to express their own desire to focus on their quantity of life.

It was not a surprise that a message about control resonated for everyone. But it was a conditional, limited control: control over who speaks for you and what they know about how you’d make health care decisions and what matters to you. This is what we can control right now. And we should.

Everyone at higher risk for severe Covid-19 should also talk to their doctor and make a plan, especially if they want to stay out of the hospital. Even in normal times, many people end up getting aggressive care in a hospital that they wouldn’t have wanted if only someone had really talked to them about what was likely to be ahead. And these days, hospitals are definitely not the place to be unless you really want or need to be there.

We are all searching for some semblance of control in this increasingly strange and scary time (think hoarding toilet paper). For the record, here is what is happening in my house these days (besides hoarding Oreos): I am halfway through completing an online will. I called my mom just after she landed back in my hometown of Vancouver three weeks ago, following a vacation in New Zealand, to figure out who her health care proxy would be, given that both my brother and I live in the U.S. across a now-closed border. I finally asked my husband to write down his iPhone passcode. And we talked about which three families, and in what order, we’d ask to take our 3-year-old son should both of us end up in hospital — or worse.

But that’s just my approach. Not everyone hears the constant thrum of Covid-19 preparedness recommendations in the same way. Our research suggests that about half of people are likely to hear calls to complete advance directives through a lens of fear and distrust in the health care system, worries over denied care that are likely exacerbated by media reports of potential ventilator shortages, and other more pressing issues of getting basic needs met.

So given what I’ve learned about advance directives and have come to understand about Covid-19, here’s my advice: Stay home if you can, connect with the people who matter in your life, reach out to your community to offer support or ask for help, know who will speak for you if you can’t, and keep a supply of Oreos. So many Oreos.

Anna Gosline is the executive director of the Massachusetts Coalition for Serious Illness Care, an organization jointly founded in 2016 by Ariadne Labs, Blue Cross Blue Shield of Massachusetts, and The Conversation Project.