Nothing Can We Call Our Own But Death

-- Richard II, Act III, scene 2

Thinking about death is hard, even for those of us who are a few steps closer than most, or maybe especially so. We recoil to consider the possibilities. Harder is discussing the death of someone close to you. Hardest is having the discussion when there is no time left to decide. Advance Directives can help alleviate this worst kind of stress. Even if you're not quite ready to consider the possibility of death, Advance Directives can be preparation for a surgical procedure as common as cataract surgery or even a "just in case" measure for people like me whose chronic and autoimmune conditions may cause temporary incapacitation. 

When I was 20, I didn’t know it, but I was taking a medication that artificially lowered my blood sugars. It resulted in the only times I ever passed out (two days in a row over the reading period my sophomore year of college). Not knowing there was a problem, I took the issue home with me for winter break. One day I had a low blood sugar and my mom wanted to administer Glucagon, which is the opposite of insulin and would bring me up to normal levels. I didn’t want it so I began to run in circles around the bottom floor of our house. My mom chased me for about 20 minutes. At some point, she must have caught up with me. In the middle of the den, she sat on my legs while my dad stabbed me in the thigh with the needle. He wasn’t gentle about it, either. She told me later that my teenage smartass disappeared for a few hours. It was the nicest I'd been in years.

The next day, the same thing happened. However, since there had been no time to refill the Glucagon prescription, they had to take me to a 24 hour urgent care office. It was raining and I went in one sock because I couldn’t find the other one. Or my shoes. When we got there, they wanted a full blood draw instead of a finger stick. I was always afraid of blood tests, and the nurse started slapping the tourniquet against her hand. It didn’t help. I said, and I quote, ”Get away from me with that thing.” And because I was over 18, they had to do exactly that.

My parents took me home and we just rode out the low. (This is when I found out how big a blood sugar range I have. The reading I took then was 19. Most people wouldn’t be conscious that low. When I’d first gone into the hospital at 14, it was 850. Normal is 80-120, or at least under 200.) It took a while. After that my mom swore never again, and she and my dad drafted a Durable Medical Power of Attorney so she could make decisions when I was not capable, as well as a Living Will because, well, it seemed like a good idea at the time. We never actually used them, but that's the Murphy's Law of peace of mind, isn't it? If you have it, you won't need it, but if you don't you will.

The Paperwork

When you hear people talking about Advance Directives, they are usually referring to a Living Will alone or a Living Will combined with a Durable Medical Power of Attorney.

The easier of the two is the Durable Medical Power of Attorney. This document designates someone to make decisions about your health in case you can't due to physical or mental incapacity. There are only a couple of steps to this one.

1.       Pick someone you trust and who knows you well. This is usually a family member, but sometimes if you are not close to your family or you think they will have trouble doing what you ask, choose a friend. (Not someone who is part of your provider network.) Also think about an alternate in case your proxy isn’t available in an emergency.

2.       Have conversations with your chosen proxy(ies). Make sure they have heard your choices from your own lips and you get a sense of whether they will be able to do as you ask even if other parties disagree.

Then there is the Living Will. This is a sensitive, grueling topic. If I let myself dwell on it, it can bring on panic attacks -- full blown, can't breathe, eyes watering panic attacks. Try dealing with that in Washington, DC traffic. Making these decisions before you need to will spare you the influence of undue stress and overwhelming emotions. A Living Will can be a complicated and nuanced document. If possible, include a trusted provider in your process to help you interpret impacts you may not understand.

There are many places you can find a standard form, but I encourage you to expand on those. Making these decisions before you need to will save you the influence of undue stress and overwhelming emotions. You will be able to consider all the options thoughtfully and deliberately. A Living Will can be a much more complicated and nuanced document.

1.       Do Not Resuscitate (DNR) Order: Do you want CPR performed if your heart stops?

2.       Ventilator: Do you want a machine to keep you breathing if you can’t on your own?

3.       Feeding Tube: Do you want intravenous (IV) nutrients if you can’t eat?

4.       Dialysis: Do you want a machine to clean and filter your blood if your kidneys can’t?

5.       Antibiotics/Antivirals: Do you want doctors to treat infections aggressively if you are at the end of your life?

6.       Palliative Care: Do you want to be treated only for pain and discomfort? (This one is usually specifically for end-of-life care. It’s what my mom wanted when her cancer could no longer be treated.)

7.       Tissue/Organ/Body Donation: Do you want to donate your tissue or organs to those in need of a transplant, and/or your body to science?

Advance Directives are legal documents, so they need be witnessed and notarized in some states. You may also want to consider a Physician Orders for Life-Sustaining Treatment (POLST) form, which is posted near a patient in the hospital. These documents should be revisited after every major life event --  marriage, kids, retirement, etc. – and annually as you get older or the status of your condition gets past a certain point.

The Health Care Decisions Act and the Uniform Rights of the Terminally Ill Act protect the decisions you lay out in your Advance Directive.

I know it's depressing. I don't want to deal with it, either. I haven't actually updated my documents since I was 20, which is bad since my proxy is no longer available. But the alternative is letting someone else decide for us. We exert little enough control over bodies that don't work properly. Do we want to cede even a little of the control we do have? I know I don't.