You should have bigger fears.
By Eleanor Tanno, M.D.
“Doc, I’d never want to live like that” or “I never want to be a vegetable!”
These are common refrains I hear from patients when discussing their medical end of life wishes. But a recent New York Times article by Carl Zimmer explains how some patients once thought to be in a persistent vegetative state may actually be capable of thought. Horrifying, right?
While research like this is the only hope to one day finding a cure for these patients, it does not lessen the visceral response most of us feel when reading about this condition. Your body as a prison, rather than a source of independence—that’s a nightmare!
From the comments on the article, it is clear most people are similarly petrified of living like this. One commenter, C, reflected on a patient they had once treated in this state: “That was not living. That was dying in slow motion.” Another commenter, Knight Chamberlain, philosophized “There’s living and there’s being kept alive. If I can’t live, let me go as nature intended.”
Why then, do only 36%1 of people have an advance directive to instruct their loved ones on their medical wishes? Let me flip that around, a whopping 64% of people do not have an advance directive.
As a physician who is passionate about advance directives, the scariest part of reading about persistent vegetative states is that this diagnosis is actually relatively uncommon. Yet, we do not devote our anxiety to planning for what is common.
It is hard to estimate numbers, but published numbers estimate that there are 25,000 adults and 10,000 children in the United States who live in a persistent vegetative state.2 By comparison, an estimated 5 million people are admitted annually to hospital Intensive Care Units (ICUs)3 with other severe conditions. The majority of these millions of people do not leave instructions on how to care for them.
As any physician who has taken care of critically ill patients has experienced, the overwhelming number of cases where an advance directive would be tremendously helpful–even life and death helpful–are not from cases of patients in persistent vegetative states.
These other patients are our parents, grandparents, siblings, and friends who show up in the hospital with relatively common severe illnesses such as systemic infections, strokes, complications of end stage cancer, and exacerbations of chronic illnesses like heart failure and COPD. In other words, we can anticipate their catastrophe, unlike that of a persistent vegetative state. And when you can anticipate, you can plan. But unfortunately, of the millions of people who show up critically ill in the hospital, the majority of them do not leave instructions on how to care for them in the form of an advance directive.
As a nation, we tend to spend our energy fearing the rare persistent vegetative state. Regrettably, many of us do not take the time to contemplate the often predictable reasons people end up in the hospital sick enough to depend on others to make medical decisions on our behalf.
So how to see the forest through the trees?
When advising clients on creating an advance directive, I ask that everyone stop and contemplate this question:
I would want to be kept alive as long as I am still healthy enough to ___.”
For example, still healthy enough to walk the dog, bathe myself, engage with my family. I call this critical question “The Litmus Test.” It is in fact the most important question you can answer and provide to your loved ones. This is their “north star” to guide them in your medical decisions. It can help them navigate any medical emergency you find yourself in. Its universality is the power of The Litmus Test.
So do not spend too much energy on what you want your loved ones to do if you are in a persistent vegetative state. While it is important, it is just so rare! Instead, focus on energy on what is common – something that unfortunately only a minority of us do.
“There’s living and there’s being kept alive.” An advance directive helps your loved ones know the quality of life for which you would want to be kept alive, and when to make decisions to let you go as nature intended.