Written by Brian Carpenter, PhD, professor in the Department of Psychology in Arts & Sciences
Name a person you’re close to in your life and see if you can answer these simple questions about them.
Would they rather eat carrots or broccoli?
Do they like country music or opera?
Do they prefer to take baths or showers?
If they were unable to eat on their own, would they be willing to have a tube placed into their stomach through which they’d take all their food?
Each question gets a little more consequential, doesn’t it? And maybe a little more difficult to answer?
The fact is, many of us will have to answer questions like that last one about someone we care about. When people in our lives develop serious illness and can no longer speak for themselves, medical professionals turn to family members and close friends to guide them in the kind of care that person would want. We act as stand-ins, or “surrogates,” to make important healthcare decisions.
But how many of us have had conversations with important people in our lives about the kinds of care they would want – and not want? People have strong preferences about what should happen if they were seriously ill: whether they would want to be put on a breathing machine, whether to get CPR if their heart stopped, where they want to be when they are dying. But we avoid conversations like that. We’re afraid of upsetting people, or we don’t know how to start the conversation or what to talk about. Or we think we don’t need to talk about preferences because we already know them, even though research suggests people vastly overestimate how much they know.
Honoring people’s medical preferences is important. But doctors can only do that if someone knows what those preferences are.
That’s why more and more people are being encouraged to make their preferences known. That can be done in a series of steps called “advance care planning.” It involves filling out documents that allow people to state what kind of medical care they would want if they couldn’t express their wishes. There are several types of documents like this: advance directives (sometimes called a “living will”) and physicians orders for life-sustaining treatment (or POLST) are two examples. Each state has its own version of an advance directive. Some forms, like the Five Wishes, are accepted in many states. And some websites let you fill them out online and save a copy. Everyone, regardless of their age and health status, should complete an advance directive.
Maybe even more important than writing down your preferences is making sure that someone knows your preferences well, in case your advance directive can’t be located in an emergency or if you medical situation is more complex. That’s where you, the surrogate, comes in. People can name surrogates to be their “durable power of attorney” to make healthcare decisions for them if they become incapacitated. But you can only do your job as a surrogate if you know the preferences and values of the person who chose you to be their surrogate decision maker. Communication is key. People need to talk with each other about their preferences so surrogates know what’s important.
Fortunately, there are resources to help people have these important conversations. For instance, the Conversation Project has a guide to help people start these conversations and lead them through important topics. The National Hospice and Palliative Care Organization also has a list of tips for talking about these topics.
April 16th is National Healthcare Decisions Day, when we’re all encouraged to think about our care preferences. Why then? Well, two things are inevitable for all of us – taxes and death. So why not put the two alongside each other and make sure we’re prepared. Take that day to start conversations with important people in your life. Learn their preferences. Share yours. And you’ll all be better prepared for the future, whatever it brings.
Brian Carpenter will join the April 13 Friedman Lecture & Awards event, “Illness Care: Advances and Opportunities” as panel moderator. The free, hybrid event takes place from 9 a.m. to 12 p.m. and is open to all.