Things We Don’t Like to Think About

“Pull the plug. Seriously. I want you to make them pull the plug,” I recently told my husband.

What was this in reference to? This particular time, it was if I was in some kind of horrible accident or hit with a disease that would render my brain unable to perform at its current level. While I admit this is a bit hyperbolic – I am willing to forego a few IQ points – the general request remains the same. I am pretty adamant about my wishes not to be on life support for a long stretch of time; I do not want to be kept alive in a vegetative state; I do not wish to wither away in excruciating pain from a terminal illness. I don’t really have a fear of death. I would, of course, prefer it be quick and as pain free as possible, but it isn’t one of the things I dwell on. I realize that much of this current opinion is based in part because I don’t have children; I am sure if we ever do, my desire to be in their lives will change my “pull the plug quick” attitude. However, as it stands now, that is what I want. I also want my entire body donated to science, every last bit of it. They can have my organs, my eyes, my hair, my skin, all of it; I won’t need it, I will be dead.

“Why the morbid introductory paragraph?” you may be asking yourselves. I have long been an advocate for everyone in my life to get their Advanced Health Care Directives in order because it seems nobody really agrees on what is best for themselves. By that, I mean what my mom wants done with her body is not the same as what my dad wants done with his is not the same as what I want done with mine, so if we each were left to make decisions for the other based solely on our own opinions, we would definitely not be honoring the desires of the other party. I also know that asking my mom to honor the decisions I have made is putting a mother in an incredibly painful position. Before I married Jon, my dad was the person in charge of making sure my wishes were met because I don’t trust my mom or my oldest brother (the two other most likely candidates in my life) to be able to say, “Yes, it is okay for you to remove her skin and eyeballs.” It is asking an awful lot of a person to honor such requests. This doesn’t mean I think my dad loves me less than my mom or brother do, but he and I understand each other in a different way, understand that hard choices have to be made sometimes and we can’t dishonor one’s dying wishes because we are blinded by grief. My mom and my brother might try, but I don’t think they could disconnect enough. I often thought it was unfair to lay the onus on him, but sometimes death, like life, is unfair, and there isn’t a damn thing you can do about it.

Now that I am married, the shitty decisions get thrown on my husband. This works out well because we are on pretty much the same page when it comes to end-of-life stuff. I trust him to honor mine because they so closely resemble his own. This hasn’t been made official yet, however, which is one of the main points I would like to stress in this article. Is your Advanced Health Care Directive in order? Do you have one at all? If so, has it been updated to include any recent changes you may want to make? Do your parents have one? What about your siblings? Friends? Death is not a fun topic. Most of us would prefer not to dwell on potential far-off situations that are unpleasant at best and heart-wrenching more often than not. Many people think they are young and don’t need to worry about it yet, thinking they have plenty of time to do it. Unfortunately, you really do never know what the day may bring and it is best to be prepared.

For instance, one of my dear friends went to the emergency room with a horrible stomach ache. He was 38 at the time. Tests were run, and while results were trickling in, three people in the matter of 45 minutes asked him if he had an Advanced Health Care Directive. Nothing will put your mind at ease quite like three separate trained medical professionals pretty much telling you you were about to be rendered incapacitated with whatever it was that was ailing you. He ended up having a gnarly case of pancreatitis, a case so bad that he was laid up for months and still, four years later, has awful flare-ups that knock him down for days at a time. He was told that he could have died if he hadn’t gotten treatment when he did. The point of this story? Not only old people need these Directives. Really horrendous and potentially fatal medical shit happens to the young as well.

Another example – my sister, Amie, who I have written about in the past, doesn’t have her Directive in order. She’s 24, why on earth would she need to think about this? Our parents would be in charge of medical decisions for her, right? Not so much. Amie is my “adopted” sister, my sister in the eyes and hearts of my entire family, a member of our clan, through and through. However, since she was a teenager when she lost her mom and dad, nothing legal was ever put in place to make her ours. This means if something were to happen to her, her next-of-kin would be in charge of making her medical decisions. Her next of kin is an uber-religious asshole aunt who would NEVER honor my sister’s wishes if they didn’t fall in line with her own nonsensical hypocritical bullshit. In order for someone to actually be able to look out for her best interests, she needs to name someone else in her Directive.

Some people are not close to their families. Do they really trust parents that they didn’t feel looked out for them as children to honor their wishes as adults? We all have the right to choose someone else to take on that role. You have the right to have your decisions honored. Without an Advanced Medical Directive, you are leaving some crucial decision making up in the air. It is an easy, cheap document to obtain and save. You can buy them at Office Depot or Staples, or you can go to your state’s medical association website and purchase a kit from them. California’s is here – Even though this topic is less than fun to think about, it is incredibly important. Don’t leave your decisions to chance; don’t trust that others will know or remember what you would have wanted, especially if they are riddled with grief and pain. It is an incredibly small investment of time and money, probably one of the cheapest ways to gain some piece of mind that there is. Do it. Pretty please. With a cherry on top.

5 replies on “Things We Don’t Like to Think About”

Interesting – I don’t think we have a legal option for that in Ireland. I’ll check it out.
My boyfriend and my sister both know my wishes – no long-term vegetative state, hospice care if possible, take all the body parts that could possibly be used to help someone, cremate the reset – but given that legally my parents would be deciding, I’m not certain what they’d do. I’d like to think they’d listen to my sister.

Important to note that the exact way some of these things work varies from state to state. Two aspects to the whole making sure you get what you would have wanted are advanced directives and health care proxy. Mostly, the Directive specifies to some degree or another what you would want to have done, and can be made quite specific (if you are going through some disease process where it might be predicable what will come up, and can be specific about witholding rather than withdrawing care) or very general for currently healthy people. But you also need to designate a health care proxy – this is where you don’t necessarily state specific preferences but legally designate someone to make the decisions for you and whatever they say goes. In some states it all kind of goes together and in some it is separate forms and paperwork. The amount of documentation varies as well – for example in NY it just has to be signed by the interested parties and 2 witnesses, but in NC it has to be notarized. And know where your paperwork is, your proxy should have a copy themselves. If you are actually unresponsive, someone showing up at the hospital claiming to be a proxy without documentation will not be given any decision making power based on what they claim.

Thank you so much for this addition. I always tend to focus on my wishes being met because it varies so drastically from other people in my life, but there are so many aspects to these directives, on top of variations from state to state. Thank you for calmly addressing these, as opposed to my wild ranting and fear-mongering =)

This is very thought provoking. My husband knows my wishes. My parents do as well. I know my husband would see to executing my choices, but I’m not sure my parents would be able to ‘detach’ themselves from their emotions. I never really thought before that my husband might not be the one to see my final wishes through. So, I’m adding this to my to do list.

My boyfriend and I have discussed this before, but before we were serious enough to really have any say in each other’s end-of-life care. But I think it’s good to make these conversations somewhat regular and not-pressure-full so that you’re appraised of each other’s changing opinions on these serious issues.

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