Living With Polio

Discussing the End of Life

From the series, Polio Survivors Ask, by Nancy Baldwin Carter, B.A, M.Ed.Psych, from Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.

Q: An important topic families tend to ignore is a discussion of those all worthwhile decisions we may have to make at the end of our lives. Knowing that we should discuss it and actually doing so are two different things. Do you have any ideas on this topic?

A: More often than not, we can’t be certain when an “end-of-life” discussion is due. If we have serious thoughts about certain issues dealing with life and death—or even how we want to be treated as age or disability or illness comes upon us at any point in our lives—the time for that talk is today.

It doesn’t matter how resistant our loved ones may be to listening to such talk or how frighteningly ghoulish it may seem to us, we must not put it off. Tough as it may be to reveal how we feel, doing so not only removes from others the burden of decision-making, it ensures that we’re going to have a better chance of being treated the way we want in times of change.

We need to be in charge of our lives. We have rights. While we are still able, we need to be the decision makers. To do this, we have to become aware of our options and take the action that puts us where we want to be.

For some of us, the day may come when we can no longer voice our desires because we have become incompetent. This doesn’t mean, however, that we cannot have a say in what becomes of us. We can speak through a Living Will as well as through a person we have appointed to spell-out our health care wishes, known as a Durable Power of Attorney for Health Care.

A Living Will is nothing like a will that distributes our assets. A Living Will expresses directives we have made—such as whether or not we want our lives prolonged artificially if attending physicians have determined our condition is incurable or irreversible or terminal. It may address whether we want nutrition and hydration to be withdrawn. It may direct that we not be resuscitated; or that we be kept as pain-free and as comfortable as possible. We decide.

An attorney can draw up such a Living Will for us—or we can find one on the Internet to adapt to our needs. To be valid, this must be properly witnessed and notarized, everything according to the laws in our state.

For a Durable Power of Attorney for Health Care, we choose a trusted friend or relative we know we can count on to speak up for us to see that others follow our wishes when we are unable to do so ourselves. The appointment is made through the same route as the Living Will.

We then have the task of spreading the word. We must tell our doctors what we want and give them copies of the Living Will for our files. Tell our children, our cousins, our friends and neighbors, the butcher at our favorite grocery. Tape a copy of the instructions inside the closet door where it can be found easily. The more people who know about our intentions, the better chance we have of getting them carried out. Talking is the key here.

And while we’re at it, we’ll discover an even greater reward than dealing with end-of-life issues. The moments spent with loved ones, remembering our lives together, laughing, touching, letting each other know how much we care—these are the words that really count.

Better start talking.

Source: Post-Polio Health International (

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Mental Health