By jenn

It is hard to watch someone die.

If your pulse drops below 20, your kidneys are producing nothing but blood clots, and you have a DNR order, you will probably die within a few days. Unless, apparently, you have a chronic, debilitating neurological disorder, like my dad does. My dad lays in a hospital bed, pale limbed, bloated, on a morphine drip. If he know who I am, he has no idea how old I might be. He hasn't walked in years, he can't feed himself, a tube removes his urine. Luckily for him, dementia set in early in the course of the disease, because the dad I knew as a kid wouldn't stand for someone cleaning him up, rolling him over, feeding him mushy, tasteless food. He would rather die.

DNR means Do Not Resuscitate. It means that if your heart stops beating, you do not want it restarted. It means you don't want extreme measures used to keep you alive. For most people, it means that you are ready to die. So you sign some papers and have them put in your medical file. You think, that takes care of that. Anything happens to you and that's it -- no machines, no CPR, no laying in a coma, no tube feedings, no heart machines, nothing. Just death. You are wrong.

What happens when you have a severe chronic illness like my dad's is that you die slowly. One by one, parts of your body shut down. You can't walk, your arms get weak, your eyesight goes, your mind goes. For my dad, all that took about six years. Then other things start failing: your bladder, your kidneys. You can't swallow. Infections begin that you can't fight off. You start being rushed to the hospital, at first only every couple of years, then every year, then every six months, then every six weeks.

When your kidneys fail and your blood pressure crashes, you will be taken to the emergency room. The medical team will probably start working on you before they see your DNR. If you come from a nursing home, like my dad did, they won't restart your heart without checking, but they will start you on an IV and pump you full of antibiotics and fluids before asking your family what you would want. This is where having Durable Power of Attorney (DPA) comes in.

If you have a chronic, debilitating, life-threatening illness that is likely to leave you unable to communicate your wishes to the medical team, the first thing you should do is give someone that you trust your DPA. It involves a visit to a lawyer, creating an advance directive and signing a paper that grants that person you trust the ability to make medical decisions for you if you are incapacitated. This is the person who will consent to or refuse treatment on your behalf. This is the person who will pull the plug on you.

This is the person the medical staff will come looking for when they realize you have a DNR. If you are my dad, this is the person who will have to reiterate to every doctor, nurse, therapist, specialist and practitioner that you do not want any extra measures taken to extend your life. This person will be asked over and over again what exactly that means to you: No IVs? No feedings? No intubation? No oxygen masks?

Most of these things you probably will not have thought to discuss with your DPA before hand. Because when you are 38 and in your right mind, it is difficult to imagine that one day you will be 57 in a nursing home with a bed sore that goes to your bone, a colostomy bag and a brain that doesn't work anymore (that is my dad). And the thing with having a chronic condition is that you could live that way forever. Well, not forever, but you could live to a ripe old age. Especially if your dad is still active at 87, like my grandfather. "Your son will likely outlive you" the doctors told my grandparents right before they put my dad in a nursing home. He has now outlived my grandma, and sometimes I think that the stress of these hospital visits will kill my grandfather.

I am not the DPA for my dad. My grandfather is. He tries to keep me involved with these medical decisions, ask me what I think should be done, but I live 400 miles away. When my dad first started having these increasingly frequent brushes with death, I would come down to my grandfather's house. I would stand by my dad's bedside, I would remember him as he was when I was young, when he taught me to ride a bike, to hit a baseball, to shoot a free throw. I would remember the first time I beat him in chess, a sign that the disease was beginning to take hold of his mind. I would forgive him for the way he treated my mother, I would say goodbye. And then, a few days later, he would be fine. He would never be as good as he was before he was admitted to the hospital, but he would be alive, each time a little worse, a slow death. After a few times I started calling my grandfather before I rushed across those 400 miles. "Grandad" I would say, "do you think I should come down?" "Well," he would answer in his slow, deliberate way, "no, I don't think so. I'll call you if anything changes."

Like I said, my grandfather is 87. He is in good shape, still walks a brisk walk unaided by a cane, still drives, still takes care of all his finances. But he is a bit hard of hearing and I wonder if he can understand a word said through the thick accents of the doctors that talk to him about my dad. At the meetings, I stop the doctors and turn to my grandfather and say "did you get that?" "Well," he says, "not all of it." And then I summarize, in the loud voice I use for public speaking, what the doctor has just said, though mostly it is things we already know.

Doctors don't really like DNRs, especially when the DPA gets support from a more hardline family member who wants to refuse all treatment because they know that if you knew what was going on you would not want to live. (That's me. My life was changed one day, the first Christmas after my dad went into the nursing home, by finding and reading my dad's journals where he wrote about wanting to kill himself. He said he took up smoking because he was to weak to take up a gun. Fifteen percent of people with this disease die from suicide.)

It isn't that the doctors want people to die slow, miserable deaths, or to live like vegetables hooked up to machines. Seeing all they've seen, they wouldn't choose that for themselves. But they are doctors. They are there to fix you. And those acute attacks -- the infections, fevers, even kidney failure -- these things can be fixed. It's that chronic disease, the one that has been slowly killing you for 20 years, that they can't do anything about. That is what they tell us every day, in every meeting, with every doctor and nurse practitioner. They respect the DNR, but they remind the family every day of the options available, the aggressive treatment to those dysfunctional kidneys. They want to hear the DPA say once again "No, he's ready to go."

But the hospital is for fixing people. So if you don't want to be fixed, and the doctors think it is safe to move you, they are going to want that bed back. So, if despite your neurological degeneration, your septic shock and you DNR order, your pale, flabby body has restarted your failing kidneys, raised your blood pressure, opened your eyes and made you as aware as you get these days, the hospital will ask you to leave. And the doctors and nurses will all be amazed that you have made it. And your family will go home and wait for the next time you almost die.


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