"Our new Constitution is now established, and has an appearance that promises permanency; but in this world nothing can be said to be certain, except death and taxes."
--Benjamin Franklin in a letter to Jean-Baptiste Leroy, 13 November 1789
Every April we think of Ben Franklin's well-worn quote. That's why April 16 was declared "National Healthcare Decisions Day" (NHDD) by Congress in 2008. It's so convenient. On the 15th you fill out your 1040 Form for your Uncle Sam, and the next day you fill out an advance care directive to make the future easier for the rest of your family. The best part is that unless you change your mind, you only make an advance care directive once. Uncle Sam wants you to stay in touch all through the year.
What is an advance care directive, and why do you need one? Glad you asked. While most of us understand the concept, the details can seem daunting. It doesn't have to be that way. On NHDD this year, over 1,000 organizations will be working together nationwide to make it easy for us to source, complete and file our end-of-life plans.
According to Nathan A. Kottkamp, Esq., chairman of the NHDD Initiative 2011, "An advance care directive is a legal document that sets forth the kinds of care a person does or does not want in the event of incapacity, particularly at the end of life. And, ideally, it also names a specific person to be sure that those wishes are honored."
Simple, right? When you're 30 and healthy, the "what-if-I-die" scenario may not seem very important. But it only takes one sobering event in your life to become familiar with the complexity of the medical system, and you realize that an advance care directive can be a critical piece of your physical and mental well-being. Still, less than half of us seem to have one.
Many people say, "My family knows what I want. I trust them to make the right decision." That's fine if you live in a state that respects the family's right to decide. But if you live in a non-traditional family or in a state that respects only legal documents and not loving relationships, you'd better trust your doctor because that's who will be deciding what your final days will be like. And remember, doctors are trained to help us heal, not to help us die. You may be subject to many invasive and agonizing treatments before your body and spirit are allowed final rest. In many cases, if you don't have legal documents in place, doctors are required to decide, and patients are presumed to consent. And there may be no requirement for the family to even be consulted.
In addition to communicating whether you want to be kept alive should you be declared terminally ill or permanently incapacitated, an advance care directive may have other functions such as a designating a person to speak for you (health care surrogate), granting a durable power of attorney, or making an organ donor choice. If these things are important to you, then read on.
Kottkamp says that the "NHDD, on April 16, is a reminder for all of us to plan ahead, since many of us just need a little inspiration to get started." Do you need help getting started? While no one really likes to think about dying, here are at least three good reasons to overcome your discomfort:
- First, you deserve to die with dignity. This means having it on your own terms. For some it will mean that absolutely everything will be done to prolong life -- every procedure, test, treatment and trial before you'll be ready to call it quits. For others it will mean only to alleviate pain and make you comfortable. It might also mean you want someone else to make the assessment and decide for you.
- Second, not many of us actually plan to die or be permanently incapacitated. It will be devastating for your loved ones, and an advance plan will be a gift to them. The need for end-of-life decisions can come on suddenly, and you may be unable to talk about it then. If your loved ones end up having to make a decision for you, some of the guilt and anguish can be relieved by knowing what you wanted.
- Third, dying is a legal proposition and having an advance care directive is just good business. A fully executed, legal advance care directive is a contract you can change at any time, and which others are required to respect. Federal law guarantees that a patient has a right to specify what medical treatment he or she wants at the end of life. However, individual states are charged with specifying the requirements for how those desires are written down, filed and enforced. Each state is different, and some of the requirements are complicated. And there's no requirement that a hospital or physician has to provide this information for you under every circumstance. You have to take control of your own death the same way you take control of your own life.
I was recently invited to speak about a "good death" at a bioethics conference at the University of Oklahoma. One participant asked me if I was prescribing only one path to a good end. I laughed. A good death is whatever the dying person wants it to be, and we all deserve to have one.
If you agree, then now is the time to exercise your right of choice.
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Janice M. Van Dyck is an award-winning novelist whose latest novel is about end-of-life choices. It was written to help start "The Conversation."
National Healthcare Decisions Day for a list of participating organizations near you
Compassion & Choices for downloadable advance care directives by state
Aging with Dignity for The Five Wishes
Living Life Dying Death