July 15, 2013

Amanda Anderson is a Graduate Fellow at CHMP

Amanda Anderson 2

There’s a closet in my apartment that I generally tend to avoid. Besides housing my winter coats, it’s where I hide my toolbox and vacuum cleaner. Dark and crowded, every time I venture into it for my hammer, I become instantly angry at the chaos. It’d be easy enough to organize and light, but who wants to do that? Instead, I curse audibly when forced to enter, and all other times avoid it.

While reading about Nelson Mandela’s current clinical status and lack of documented end of life planning, I couldn’t help but think of my disorganized, but highly necessary storage space.

Death is a topic that plagues every living thing, but our society has decided it is worth talking about only when the occasion arises or is near. Hence, we are left, or leave our loved ones, to make decisions that we likely never spoke of in our healthy life. Cramped and disorganized, we’re forced to piece together parts of the puzzle of illness care in the dark; would mom want to live on a ventilator, would dad be okay with a feeding tube, would I want to persist as a vegetable?

It saddens me that a man as iconic and revolutionary as Mandela lacks a clearly documented living will. His lack of specificity, as hard to believe as it is, now leaves his family to make difficult – perhaps illegal by South African standards – decisions, as he lays on his deathbed in an uncomfortable Intensive Care Unit, instead of his own home.

A living will, as defined by the good (and hilarious) folks at Get Your Shit Together, an organization that helps people organize for illness and end of life, is a document that, “frees your loved ones from the potentially unbearable burden of wondering, on top of grieving, if they’re doing ‘the right thing’ with your medical care.” This document broadcasts your personality, your beliefs, and your life goals, in preparation for the unfortunate, but inevitable time when you lose the ability to make them known yourself.

A living will is the gold standard of illness planning. In a living will, you can literally specify how you want your toenails cut and what shade you want them painted if you are ever hospitalized and not able to say so. While most cookie cutter living wills specify things like artificial nutrition and life support, there is nothing too trivial to add. For me, I want music played at my bedside, an iPad always handy for communicating, and friends and family reading to me for hours a day. And my nails will be painted rainbow.

In my living will, I tell my family that I want a good fight, and a perfect team of practitioners (fire them and transfer me to another hospital if you have the slightest of doubts), a daily meeting with said superstar team, and a strong, firm surrender if things start to look hopelessly grim. I have a no veggie policy. I also want my hair braided and washed regularly – there will be no haircut-courtesy-of-lazy-nurses happening to this girl.

You see without a living will, you give up control of your wishes to the random doctor that is assigned to you, and your grief-stricken, traumatized family. With a living will, you can let your wishes be clearly known when you have no physical voice to speak them. Believe me, this document is very, very important when you have a tube shoved in your throat and you’re left to gingerly scribble on a piece of scummy paper with a sharpie. If your impatient nurse is kind enough to provide you with one.

But I understand, especially after reading about Mandela, that a living will is a lot of work. Even though it can be written in any way you like – a letter to your loved ones, a blog post, a quirky comic strip, as long as it’s signed by a witness and a legal professional – the task is quite daunting. For those not yet up to the living will task, an easier, quicker, and perhaps, even more vital option, is a health care proxy.

A health care proxy is another legal form that is kind of like an abbreviated living will. It states and determines your legal decision maker if you can’t make decisions for yourself, and can even give a snapshot of your detailed wishes. It’s like a fancy, medical emergency contact.

A bunch of med students got together and started a pretty cool website called Do Your Proxy, where you can literally create a health care proxy in two minutes. I timed myself. The site will generate a form for you that lists your decision maker(s) and any other specifics you might want to add. They even provide information on state-specific technicalities and forms.

Above everything, though, no matter your age or health status, it’s just important to have talks with your family and loved ones. These talks don’t have to be morbid, just organizational conversations about what you want to happen, who you want to be in charge of you, and who you want to see you, if you ever lack the voice to choose.

The good thing about having these conversations, is that you start to delve into the heart of the fact that life is all about transparency and trust. Often, emergencies come when least expected, and through them, you see firsthand who supports, and who runs in the other direction.

The Conversation Project, which not only supplies a free starter kit for beginning the conversations about planning, but dedicates an entire part of their website to sharing the stories surrounding these conversations, can help get the ball rolling. Many, many organizations exist, so find the one that you like the best.

Having these conversations reminds us that death and illness are the natural, commonly occurring stuff of humanity. Why see them as blights on our timeline? Illness can bring closeness and healing to relationships once deemed lost or weak, and death, while final, can be comfortable, peaceful and natural. These decisions and documents should be creative, funny, supportive gifts to the people we love – no matter our age. Because, think about the title living will – it is exactly that – a will of your life.

I may organize my closet soon, and stick a pretty light inside of it. I love my coats, and they deserve some beauty and respect, and so does my vacuum. So does illness, and so does death. Because, like my tiny space, they too are part of my life, and all life is worth living in an efficient, creative and valued way. As Mandela so aptly, and perhaps fortuitously said, “One cannot be prepared for something while secretly believing it will not happen.”

How’s your life closet looking these days?

 written by Amanda Anderson, RN, BSN, CCRN