COVID-19 is claiming victims around the world, and in some ways, life will never be the same—including, for some, the realization that unexpected death is always a possibility.
I have worked for more than 25 years on matters involving end-of-life decision-making. I thought I had considered every possibility, and I’d made it very clear about what I would and would not want to happen to me if I was unable to make my desires known.
Yet there are now things I thought I was certain about that I am suddenly reconsidering.
Advance directives, sometimes called living wills, are legally applicable in all 50 states, and are available to anyone 18 or older. They tell medical personnel what kind of care we are willing to accept or reject. In the 19th century, the Supreme Court concluded that unwanted treatment can be considered an assault—that we own our own bodies. That is why we have “informed consent” for any type of procedure, from having a tooth pulled to open-heart surgery: We are made aware of what the procedure will be, and what possible negative effects could conceivably result, so we are making a conscious decision.
I’ve always been sure that I would never want to have my life sustained artificially—on a ventilator, for example. I remember my father, fully conscious and aware, being intubated. He couldn’t talk due to the tube down his throat, and his arms had been secured to the bed rails—because he kept trying to pull that damn tube out. I remember him pleading with his eyes; he did not want what was happening. But my mother was legally empowered to speak for him if he could not speak for himself, and to her, he was still “in there,” and she couldn’t ask to have the machine removed, although she knew that was what he wanted.
I decided right then and there to make sure I would never have my life dependent on being hooked up to a machine. I wrote in my advance directive that I did not want my life sustained by artificial means; I would prefer to be kept comfortable with narcotics, if needed, even though the drugs might hasten my death. I wanted to die a “natural death.”
Now we are hearing about people who came down with COVID-19 and who needed to be on a ventilator for up to several weeks—and then recovered. I’m rethinking my choices yet again. While varying sources say that between 66 and 86 percent of COVID-19 patients on ventilators don’t make it … that means between 14 and 34 percent of patients do.
I now have to think about whether I want to buck those odds—but with an advanced directive, at least I am the one making the decision.
If you have never filled out an advance directive, or you have not revisited your choices in some time, pay some attention to this. Forms are available free from the state and local hospitals, and at www.cdc.gov. There are also online registries. One of the best forms I’ve found is available for a small fee from Five Wishes. It applies in 42 states, including California (and it can be used in all 50 states by attaching it to an individual state’s form).
The first two wishes are part of every state’s official form, and are legally enforceable: Who you want to speak for you if you are unable to speak for yourself? And what treatments do you want or not want, under specific conditions? The choices can include how long you might want to live in a coma before life support is terminated; whether you want antibiotics or forced feeding; if you want to be resuscitated if your heart stops; and whether you want every possible medical treatment to be given indefinitely. None of this is easy to contemplate—but the choices are yours. And that’s the whole point.
The remaining wishes are informative for your family—what type of burial or alternative you want; whether you are willing to be an organ donor; how comfortable you want to be as your life ends (for example, I hate being massaged, and I want everyone to know that); whether you want music played, or religious readings; and other things you might want your loved ones to know. These wishes are not legally binding, but the information can be both comforting and helpful to those left behind.
Advance directives don’t require a lawyer or notary public. You can fill out the forms and have two neighbors or other disinterested parties (not your medical team or children, for example) acknowledge that they saw you sign.
Even if you or a loved one refuses to fill out forms, you need to have these conversations—because you never know what could happen. A grown child could be in a terrible auto accident. Your grandmother, who has always been there for you and has lived a long, full life, could suffer from a sudden illness. Something could happen to your spouse. Do you know what they would want? Do they know what you would want?
You also should choose who will speak for you, if you can’t speak for yourself. You might opt to select a best friend or a more-distant relative, rather than someone who could get caught up in the middle of family drama or be subject to guilt. Whomever you choose should be very clear about what you want and don’t want—and be willing to act on your behalf.
Without having an advanced directive, the law decides who can speak for you—your spouse, child, parent or someone further down the family tree. Worse yet, you may be unfairly shifting the burden of those agonizing decisions onto the medical team acting in the demands of the moment.
Advance directives can be withdrawn, amended and updated at any time—which brings me back to what I’ve been rethinking about being on a ventilator. It’s definitely something I want to think about a little more, and talk about with my family.
The experience of COVID-19 has hopefully opened our eyes to positive societal changes we can and should make—universal access to health care, preparing for the worst whatever the cost, working with other nations because we are all in this together, and so on. On a personal level, we can use this difficult time to internalize how suddenly life itself can change—and make sure we have the ability to have some say in the matter.
The question is … who decides?
Anita Rufus is also known as “The Lovable Liberal.” Her show That’s Life airs weekdays on iHubradio, while The Lovable Liberal airs from 10 a.m. to noon Saturdays. Email her at Anita@LovableLiberal.com. Know Your Neighbors appears every other Wednesday.