A few years ago when I went skydiving for the first time, I learned about the backup parachute. This is a second chute, just in case the first one failed. While no one wants to think about the primary parachute failing, it was comforting to know we were prepared … just in case. That’s kind of how I see end of life care planning, while we don’t want to think about needing it, it’s nice to be prepared … just in case.
I feel this way now in part because there was a time when I may have needed it, and wasn’t prepared. No, not when I went skydiving, thankfully, that went off without a hitch. But, about six years ago, when I was just 24, I found myself critically ill, and totally unprepared. And I wasn’t the only one. As a physician working in the ICU, I see many patients and families unprepared to deal with the decisions and realities of the end of life, here are 4 things I believe everyone should know to be better prepared.
1. Know it’s okay to talk about it … right now. I was 24, ate healthfully, went to spin class more often than not, there was no reason for me to have set up any of the things needed at the end of life. Except there was. There always is. You see, we’re all dying, it’s only a matter of rate. This may seem like a morbid and depressing thought, and while on some level that may be, it can also be an empowering one. And it is also a fact. Whether we choose never to discuss it and pretend it doesn’t exist, or we preplan, death happens; sometimes swiftly and without warning, sometimes after a long drawn out decline, often somewhere in between, but whatever form it takes, it befalls us all, and we all have an opportunity to shape pieces of this. What happens to our bodies, what happens to our organs, and sometimes even how we die. All too often thought and discussion of this is believed best reserved for when death seems imminent. I see this play out all too often in the ICU. But you have the power to participate in this discussion, use it.
2. Know who your proxy is. A health care proxy is a person whom you select as your agent to make decisions related to your medical care for you should you be unable. This can be anyone you name, your best friend, your fiancé, that cute guy at the deli. Okay, you probably shouldn’t choose a stranger for this, but you get the point. In most states, there are default decision makers built into law unless you name someone. If you’re married, it falls to your spouse. If you’re an unmarried adult without children, decision making for you falls to your parents. If you’re unmarried and have adult children, the decision making will fall to all of them equally. It’s important to note that having more than one person share this role, can sometimes complicate and confuse matters, so taking steps to name a proxy can help decrease conflict in what is sure to be a trying and stressful time for your family and friends. If you take steps to name your proxy, it’s whoever you choose it to be, your sibling, fiancé, partner, bestie, you decide.
3. Know you can change your mind. The finality of death can make us feel a sense of finality that prevents us from naming a proxy or setting up an advanced directive. An advanced directive, also known as a living will, is a written document that expresses what you would want done or not done in certain situations. Feeling like things may change can sometimes prevent us from having these conversations and making these decisions, but, guess what? You can go ahead and change who your proxy is and what you would want done any time you like. I’ve changed who my proxy is and what I would want a number of times over the years. It’s just as simple as setting these things up the first time around is.
4. Know to ask questions. Ask your doctor, ask the Internet, ask your cousin and look it up together. You know the old adage, if you don’t know, ask somebody. There are resources available to help you. Most states even have webpages with premade forms available. The key is to get the conversation started and find out what you need to know to. It’s important to empower ourselves with knowledge. Remember, wearing a seatbelt doesn’t make us forget how great the ride is, nor does it mean we think we’re going to crash. But life can be unpredictable, and won’t you feel better the next time you jump out of a plane, slip and fall, feel a lump, have a headache knowing that you’re prepared … just in case.
Anjali Dogra is an anesthesia, pulmonary and critical care fellow, and a member, public health committee, resident and fellow section, American Medical Association.