Why do I need an advance care directive?

If you don't want to put your family in a very difficult situation by trying to intuit what you wanted in life, then you need to do an advance directive. It becomes less about you and more about the pain and drama you're going to inflict on a bunch of people who have different value systems than yours. By having an advance directive, you state very clearly who you are and what your preferences are. It doesn't leave anything to chance or confusion. 

When you need to call out the advance directive, it's because there's a major tragedy or trauma happening. When people are confronted with those situations they generally get lost in their own cognitive biases and they generally make it about themselves and what they believe your belief systems are. It's one thing to die with dignity personally, but if you want your family to witness a dignified death, then have an advance directive.

You may not actually need one. I’m somewhat of a rebel about advance directives in that they serve a really important purpose for certain people. In reality they may not be for everyone. I worry that our healthcare environment only focuses on the document, such that if individuals only focus their time, energy and precious attention on creating an advance directive, and skip having conversations with the people who will be in a position to interpret the document, it may, unintentionally, actually get in the way of having their wishes followed. To understand why this might be, we need to review the purpose of an advance directive.

An advance directive essentially does two things: First, it names who you want to speak for you in regard to making medical decisions when you lose the ability or chose not to speak for yourself; and second, it describes the types of medical care you wish to receive and/or avoid.

That first part of naming a surrogate decision maker, or a durable power of attorney to make medical decisions, also referred to as a healthcare proxy, is in many ways the most important part of an advance directive so you don’t want to make this decision on a whim. Many people reflexively select their spouse or your child, with the reasonable presumption they know them the best. The potential problem with this is an assumption is being made that your spouse or child will actually be willing and able to follow through with what you want even if it comes in conflict with what they may want. For example, let’s say you select your significant other to be your healthcare proxy and you tell them, "If I lose the ability to laugh and my mind is not the way you know it is today, please don't extend my life with heroic medical interventions.” Then something happens and now you can no longer communicate. Your doctors will turn to your healthcare proxy and ask what type of medical interventions you want. It is completely possible and understandable that the person who loves you the most won't be able to honor your wishes if it means not trying to keep you alive and instead allowing you to die. In this situation, nobody ends up getting what they want and immense guilt can develop. So, you want to make sure that the person or people you name to be your spokesperson no only knows what matters most to you, but that they are also willing to take on this role.

The other part of the advance directive, which most people focus on and think is what an advance directive is all about, is naming the types of medical care you would or would not wish to receive. The challenge with this section is that it is actually pretty impossible to complete. Most medical decision making is nuanced. I often hear people say as they read through various options outlined in an advance directive, "It depends." And that is absolutely true. As a physician, I can tell you, trying to put that in paper, like a definitive "if this, then that" is really hard to do because medicine is changing constantly and our lives are dynamic. Yet a document is pretty darn fixed unless we create a practice of revisiting it regularly and updating it. Even then, there's nuance to it and that gets hard to convey in a document. It is not, however, hard to convey in conversation with the people who care about you. The more conversations you have with the people who care about you and are willing to step into this role, the better you’ll be. They need to understand the nuances of how you make decisions and prioritize things. Understanding you helps your proxy communicate with your healthcare team instead of guess.

So why complete an advance directive? First and foremost, you need an advance directive if you wish to name a proxy that would not be the legal default. Every state is different so you need to check the law where you live. In general, next of kin is the default that healthcare workers turn to in an emergency. If you do not wish your default person to be your healthcare decision maker then you definitely want an advance directive to legally name the person or people who have your permission and therefore, legal authority, to speak on your behalf. Second, if you do not have people in your life whom you wish to speak on your behalf, then a document can at least begin to describe in broad strokes the types of care you are open to receiving. Even better would be a document that describes your values and priorities, the things that matter most to you to help guide your healthcare team in the absence of your own voice. For example, your form could read, "My dog is the most important relationship in my life. If I cannot be with my dog, then please make sure my dog is cared for and do not do things to prolong my life. Please focus all care on making me comfortable and helping me know my dog is loved and cared for." Or, "I really care about being independent. What that means is I want to be able to use the bathroom and feed myself. If not, then my quality of life is not where I value it and I wouldn't want you to do things that would unnaturally prolong my life. I'd rather allow a natural death." 

The challenge with this second statement is that humans are incredibly resilient. Unless we have had a specific experience with medical interventions or life-altering illness, we may make assumptions that we believe we would never tolerate, yet in actuality, we find ways to accommodate. For many, the will to live is pretty strong and what was unimaginable can become manageable. In contrast, for people who have experienced certain medical interventions, whether directly or by close observation of caring for a loved one, emphatic refusal to live life a certain way can become appropriately unwavering. When you've given a sense of where your values lie, the healthcare team can start to align what is medically possible with those values. With an advance directive, a lot of people really don't think about it much more strategically than "It's done!." Most people then put it in a drawer and forget about it. That's the worst case scenario. We need to be thinking about this constantly and communicating it relentlessly.

Because of accidents or illness, 3 out of 4 people will be unable to make some or all of their own medical decisions at some time in their life. If this happens, doctors need to know who can make decisions for you and key decisions in responding to a medical emergency, such as whether or not you would want to be on a ventilator if you cannot breathe on your own. 

An advance directive is a document that you can use to share with your medical team and loved ones what decisions you would want if an emergency were to happen. Completing an advance directive while you are well insures that you are most in control of your healthcare and it brings peace of mind to your loved ones should something were to happen and they need to make decisions about care on your behalf. 

One great resource is Prepare for Your Care. If you want to explore discussing advance directives with your entire family, including adolescents and children, I’d suggest Five Wishes.