Soapbox, Getting on Mine for a Moment

Disclaimer: What I’m about to say is based on my personal experience only.  The laws that govern this may depend on what state and/or country you live in.

It’s very rare that I get on my soapbox.  In fact, I pride myself on not doing it—I don’t want my blog to become a place where I vent and get on people’s cases about what to do or how to think (and you’ll never see/hear me talk politics).  I hate it when people to do that to me in person (which happens way too often), so I try never to do it to other people in any form.  However, I have to mention this topic because I am so passionate about it and because it’s so important to me.  And the truth is, not too many people think about it, so it could very well be important to them too; they just might not know it.

I’m almost finished reading Jodi Picoult’s latest book, Lone Wolf.  (If you have never read anything by her, please check her out—she’s a great writer and usually writes about current hotly-debated topics.  Plus, she usually puts in a twist or two.)  Her website describes this book as a “look at the intersection between medical science and moral choices.”  In short, two children must decide the fate of their incapacitated father (he is in a vegetative state due to a car accident).  They are on opposite sides—the son feels strongly for ending life support; the daughter feels strongly to keep him alive.  How do you choose?  Could you choose if you had to?

I’m not here to debate which option is right—that’s a completely personal choice.  I’m not even going to tell you which I would choose (though you might be able to deduce it from what I’m about to say).  What I am here to say is that it’s very important to make the decision for yourself, about yourself.  I can’t stress enough the importance of having a living will drawn up.  Most people don’t know this, but it’s not enough to tell your loved ones if you would want to be kept alive with medical intervention.  It has to be in writing, drawn up by a lawyer.  Even if you told your loved ones what you would want, who you have listed as your health care proxy is who gets to make the call.  So if you don’t have a health care proxy, you should name someone, again in writing, drawn up by a lawyer.  And if you don’t have a health care proxy, it’s the doctors who get to choose, and their purpose is to keep you alive by whatever means necessary.

Here in New York State (and many others), if you are unable to swallow, doctors will insert a feeding tube.  The only way to have a feeding tube removed is by a court order from a judge.  This is a process that can take many months.  And they don’t always approve it.  This means that anyone can live in a vegetative state for several years.  I can tell you from personal experience, when you’re going through something as difficult as watching a loved one “live” in a vegetative or even an incapacitated state, the last thing you need on top of that is having to decide whether or not to allow someone else to live that way—it’s very hard.  In fact, hard doesn’t even begin to describe it.  But if that person has a living will, you know without a doubt what he or she would want for themselves.

As hard as it was to watch my father die, we knew that he did not want to live a life where he didn’t get to actually “live.”  He did not want to be kept alive by machines.  He did want a feeding tube if there was no hope of recovery.  He would have rather died than live in a nursing home.  He had all of this stated in legal documents.  And as difficult as it was to follow his wishes, it was the fact that we knew what those wishes were that allowed us to say goodbye and let go.  Keeping him alive would have only been for us, not him.  And to see someone you love just lying in a bed, not able to talk, eat, stand, communicate, or even think is a terrible thing—it tears at you every moment of every day.  As hard as it is to let go, to me, it’s harder still to see a loved one in that state.

After his death, everyone in my family had all of their documents drawn up—will, living will, health care proxy, living trust, and power of attorney.  If you don’t have any of these, please think about getting them written, if only to save your loved ones from having to make the hard choices for you if you cannot.  Trust me—just being in that situation is more than enough to bear.

To find out how and where to have these documents drawn up, you can check your local government’s website and/or speak with a lawyer.

Thanks for listening.  I’ll get off my soapbox now.  We will return to our regularly scheduled programming with the next post…