Living with death and a DNR

What's life like when you wear a "Do Not Resuscitate" bracelet?

By Guest Blogger Lisa Calderone-Stewart

I have been in hospice care since November of 2009.

Usually, a patient moves into hospice care when they are thought to have six months or less to live. I received my own "six month" life expectancy (rather, "six months to perhaps a year if they can successfully shrink my tumor") on August 20, 2009. The medical team's one attempt at shrinking my tumor (a chemo-embolization process) in September 2009 was unsuccessful, so I was more than eligible by November.

When you enter hospice care, the focus changes. You are no longer trying to "treat" your cancer; you are not looking for a "cure." Your focus is merely trying to stay as comfortable and pain-free as possible, in this last leg of the journey, as you draw closer to death. It's only about symptoms and how you feel.

So I was given a "DNR" certificate – "Do Not Resuscitate" – for my medical file. When I came to New Jersey, I realized they are actually state-specific. So now I have both a Wisconsin one and a New Jersey one.

I found out that you can also get a "Medic Alert" bracelet. Other people have such bracelets declaring the person is allergic to penicillin or diabetic; mine says, "NJ, WI DNR Order on File. DO NOT RESUSCITATE." It also has my name, my DNR ID number, and a toll-free number someone can call if they are confused about the instructions.

It takes another person to fasten the bracelet. The clip is tricky, so I can't remove it or put it on myself. It won't fall off by mistake. So it stays on, all the time, while I shower, while I swim, no matter what I do. What would be the point of having one if I took if off?

It causes different reactions.

At a chiropractic office, they thought it was a really cool idea. They had never seen one. They immediately understood the need. It's important for anyone who might be with a patient for any time at all, away from her family, to know what the patient's and family's expectations are. Such a bracelet warns everyone. No one is going to rush to a person's medical file for a DNR order – who would even think of such a thing?

At the YMCA, there was a different reaction. When I presented the person at the front desk with the medical card for them to copy for their files (as well as showing them the bracelet), the receptionist paused a moment, open-mouthed and at a loss for words. She might have wondered how could someone so close to death can still manage to swim 6-8 laps in the pool? There are healthy people who can't do that.

And yet, if something happens to me in the pool or in the locker room, the last thing I want is for some EMS team to revive me, just so I can die a more drawn-out death a month or two later! So they alerted the director of risk management and the life guards that a swimmer with a DNR bracelet would be in the pool and locker room every week, and that they should check that before making any attempts at resuscitation.

For my family, it was like taking one step closer to the fuller reality of what is to come. It makes us almost annoying aware, it makes denial impossible. For myself, too. Every time I look down and see that bracelet, it's pretty hard to forget my situation. Not even for a minute.

In some ways, every minute seems to count more. Every "unforgiving minute" seems fuller–or emptier, depending on what I am doing to fill it.

When you know you are dying, it's really just a new way of living.


Guest blogger Lisa Calderone-Stewart is the director of Tomorrow's Present and an author and speaker on youth leadership. Read more about her interfaith youth program in Student Teachers, from January 2006.

Lisa was recently diagnosed with terminal cancer. For more on her story, see "The dying wish of a youth ministry pioneer." You can also read Lisa's personal blog Dying to Know You Better. Her blog posts on USCatholic.org can be found at Final Thoughts.

Guest blog posts express the views of the author. They do not necessarily reflect the views of U.S. Catholic, its editors, or the Claretians.