Thirty years ago, prospective first lady Barbara Bush spoke plainly about her perspective on old age: “I want to still be able to garden while I can bend over.” She was known and appreciated for what journalist Maureen Dowd describes as her “radical candor.” And it is likely this forthrightness that led the Bush family to announce, shortly before her death, that she had decided to forgo further medical treatment and pursue comfort care only. Barbara Bush’s willingness to speak out about her values and life goals should be an inspiration to people of all ages – and her passing reminds us why this is so important.
Nobody likes talking about death, especially their own.
In the words of cartoonist and author Roz Chast, “Can’t We Talk About Something More Pleasant?” Yet it’s this kind of conversation, more so than any legal document, that can best guarantee that your interests will be respected when you are infirm and unable to advocate for yourself.
As a professor of bioethics and health care law, I think about these issues constantly. I also talk about them incessantly—and I’ve learned the hard way that Easter dinner is not the right time to talk through the difference between artificial nutrition provided through a nasogastric tube versus a PEG tube implanted in the abdominal wall.
Nor is the best time to discuss these issues when you or your loved one is lying in a hospital bed, when emotions are running high, and you’re being asked to make critical medical decisions quickly. There is little time to step back and think about your values and translate them for health care providers who seem to be speaking a different language. Defibrillation, tracheotomy, dialysis, terminal sedation, skilled nursing facility … which of those words will help you explain that your critically ill brother wants to die at home, in his favorite La-Z-Boy, with the Ramones playing full blast?
The National Hospice and Palliative Care Organization advises people to have “conversations before the crisis.” An illness or death in the family can be a good prompt for conversation, but so can current events – after the Terri Schiavo case, for example, public interest in end-of-life care planning increased dramatically. Even television shows and movies can spark a discussion. In the 2017 comedy The Big Sick, the ex-boyfriend of a critically ill young woman is asked to give consent to put her in a medically-induced coma. It’s a plot set-up that would never happen in real life – but I’ll give the writers a pass, because the movie raised awareness among millennials that medical decision-making isn’t just an issue for their grandparents.
There are various online tools to help you think through your values and preferences regarding end-of-life care – Five Wishes, The Conversation Project, Prepare for Your Care, and The Go Wish Game are just a few of the many options.
These conversations are hard, but they are more important than anything else you do.
As an attorney, I can tell you that in the end-of-life care context, the law has its limits. Copious research demonstrates that advance directives, also known as living wills, often fail to achieve their intended purpose: either they can’t be found, the language is unclear, or health care decision-makers disregard them. Moreover, they are legally binding in only limited contexts. These problems have prompted some to seek alternatives in video advance directives and standardized medical orders. But these have their flaws as well.
This is not to say that you shouldn’t prepare an advance directive – particularly if it’s well-drafted, it can be a valuable tool in some circumstances. An even more important legal document to have is a health care power of attorney, which designates whom you want to make medical decisions on your behalf when you can’t speak for yourself. You can do this without a lawyer–The American Bar Association’s Commission on Law and Aging has a helpful brochure that walks you through the whole process.
But first and foremost, the people who will make decisions for you need to know what you want.
So tell them. If the most important thing in your life is being able to interact with your children, and you know it’s time to end treatment when you can no longer do that, tell them. Then let them ask questions, which may prompt you to think further about what you want. “What do you mean by ‘able to interact’? What if you can’t talk anymore, but you can squeeze your daughter’s hand?” “When you say ‘treatment,’ do you just mean things like CPR and ventilators? I assume you still want us to feed you, right?”
Finally, remember that the person you choose as your health care power of attorney has to be willing to serve you faithfully in this role. It may be that the person closest to you isn’t your best medical representative. If you know that your spouse will have trouble letting you go, but you want to avoid a prolonged death, maybe your matter-of-fact sister-in-law will be a better choice. Your spouse may even be relieved that you’ve lifted this burden from them.
At the end of the day, when you are unconscious in a hospital bed, who will advocate for you best? Not a printed legal document buried in your medical chart. It’s your loved ones. But the only way for them to know what you want is to have that difficult conversation. Making end-of-life care planning decisions now will help ensure that when the time comes, your family will struggle less with the inevitable question: “What would she have wanted?”
–Nadia N. Sawicki
Nadia N. Sawicki is the Academic Director of the Beazley Institute for Health Law and Policy at Loyola University, and a Public Voices Fellow with the Op-Ed Project. She teaches her students that while law school is supposed to teach them to “think like lawyers,” they shouldn’t forget how to think like human beings