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FIRST-PERSON: From personal experience

ALBUQUERQUE (BP)–Many of those who debated the late Terri Schiavo’s plight over water coolers in office buildings across America probably didn’t have a clue how painful it was to watch and listen for many of us who have “been there and done that.” Those of us who have had to make end-of-life decisions for loved ones know how difficult and painful it can be. The decisions you sometimes have to make for those you love dearly aren’t always as simple as some people made them out to be prior to her death today. They are sometimes very complicated and agonizing.

I don’t claim to be an expert on this issue by any stretch of the imagination, but I do have experience with it that I have wished I didn’t have. For 10 years, ending four years ago, I was my wife’s court-appointed guardian because she, from the time she was 37 until she was 47, was unable to make and communicate those kinds of decisions for herself.

I had to rely on my memory (which is becoming less and less reliable) on what she had said during our first 18 years of marriage concerning what she would want if she found herself in the state in which she, without warning, suddenly was cast in April 1991.

She spent the last decade of her life like she spent her first year — totally dependent on others to take care of her. So we did, and I felt responsible for making sure she received the care she needed. At the time of the automobile accident that caused her condition, I authorized physicians to utilize everything available to them to save her life, in hope that she would eventually be able to return to the life and ministry she had known. That didn’t happen, but God continued to use her to be an incredible blessing to many despite her disability, which was as close to total as you can get. There were several times during those 10 years I had to make life-and-death decisions for her. As long as there was hope she could continue to live, I directed physicians to do everything they could to prolong her life.

I was sincerely grateful that she had a feeding tube by which she could take all the food, hydration and medicine she needed those first 14 months and, after God enabled her to take pureed foods by mouth and drink liquids through a straw, we left the feeding tube in (and even replaced it a few times when it wore out), so she could continue to receive an accurate measurement of medicine as well as liquid she needed when she had a hard time using the straw. We gave her food, water and medicine until her last breath, but when it became clear that the Lord would soon take her to her heavenly home, I told the nursing home staff to let her go and, when she went, not to try to bring her back.

God gave me a real peace when she left, but I’m not embarrassed to tell you I shed buckets of tears that day and for many months afterward. Saying goodbye to the one I had shared my life with in a unique way for more than 27 years was, without a doubt, one of the hardest things I have ever had to do in my life, but I wouldn’t deny her the place our loving Lord had prepared for her for anything in the world.

You’ll never know how surprised I was when the Lord brought another beautiful Kathy into my life the following year. He is so incredibly good! My second marriage has been different from my first in many ways, and one of those is we have both put our personal end-of-life wishes in writing just in case.

Kathy has told me she’d appreciate knowing my thoughts on the topic if she ever has to make those kinds of decisions for me, and I know I would appreciate knowing her thoughts if I’m ever put in that difficult position again. Believe me, it also helps even more knowing that both of our No. 1 concern is knowing what God wants when that time comes. In light of that, these are some of my thoughts on the subject right now (and, as always, they’re subject to changes the Lord directs me to make). If nothing else, maybe they’ll help some of you prayerfully come to your own conclusions.

We have to make many life-and-death decisions in America today because of modern technological advancements during only the most recent sliver of human history. The vast majority of people who have ever lived didn’t have to decide whether to “pull the plug” or “remove the feeding tube.” When their loved ones couldn’t breathe or take food or water by mouth, they died 100 percent of the time. Throughout most of human history (and still for people in many parts of the world), end-of-life decisions were much simpler.

And it can be a blessing to hook loved ones up to a machine, unhook them a few days or weeks later, and they can be a blessing to others for several more years. That’s the best-case scenario. On the opposite extreme are those who will require the help of a machine to keep their body alive but they and everyone else won’t get a thing out of it. Of course, it’s all those scenarios in between those extremes where end-of-life decisions are excruciating.

I have signed an Advanced Health-care Directive authorizing Kathy to make such decisions for me if I can’t, and if she can’t, the responsibility falls to the girls. I think it would help them if they knew what I think I would choose if I could. Legally, it certainly appears now, I could refuse any measure that could be used to keep me alive even if I could live for several years, but I believe God would have a serious problem with that.

This is what I want to tell my family:

If medical experts think it’s pretty certain I’m going to die soon or never regain the slightest level of consciousness, I’d much rather start jogging again on the streets of glory. And, if that’s the prognosis “to a reasonable degree of medical certainty,” I’d much rather not undergo any surgical procedure that is only going to keep me here a little longer and make my final days more miserable and me more of a burden on others. Do, though, tell doctors I’d rather not have to suffer too much pain during those final days. We’ll still have eternity to spend with and visit each other. And by the way, if I’m in the state I mentioned at the beginning of this paragraph I won’t mind if you don’t insert a feeding tube, either. Whatever nutrition and moisture you can get down via my mouth, though, would be much appreciated (and I’m pretty sure Terri Schiavo would have appreciated it too). You know how much I enjoy good food.

(It seemed to me that Terri wasn’t in the condition I described above. The videos I saw gave me the impression she was as responsive as Kathy was, though Kathy was able to communicate with us occasionally.)

If, on the other hand, there’s a possibility the Lord may not be through with me here yet and I might be able to make a difference for Christ for a little while longer, go ahead and let them hook me up to any machine available. I want to be all God wants me to be for as long as He wants me to be here. I know the day will come when there will be no keeping me from the glory He’s prepared for all who love Him.

I do understand, you may find yourself facing a situation and having to make decisions about things related to any final days that I’ve never even imagined. Know that I trust you to make the best decision under God that you know how to make. And when we see each other again, I won’t chew you out for making a decision I wouldn’t make. If I can’t make the decision, it’s not my responsibility to make it anyway; it’s yours. And if anyone else gives you a hard time about your decision and the Lord ends up taking me home, I’m liable to ask Him if I can go back and beat them up (though I’m pretty sure what He’ll say). God has made us “a Kingdom and priests” (Revelation 5:10) and entrusted us with some really huge responsibilities — and I can’t think of anything “huge-er” than the kind that people have to make at the end of their loved ones’ earthly pilgrimages.

So there. Now my family has a notarized Advance Health-care Directive -– and this column — to help them make decisions concerning my care, if it comes to that. If your loved ones would appreciate similar guidance from you, now would be a good time to add it to your to-do list, while it’s still fresh on your mind – and while you still have one.
John Loudat is editor of the Baptist New Mexican, the newsjournal of the Baptist Convention of New Mexico.

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