In order to do comprehensive advance care planning and develop an advance directive, there are many tools available online. We recommend starting with the UAMS advance directive documents; these are simple and fast. However, for a more comprehensive approach, try www.mylivingvoice.com. This site will walk you through the entire process. It will take some time, but you can stop and come back as you need. You must register, but it is a free service of Penn State University at Hershey.
Also, any of the faculty at the UAMS Department of Medical Humanities & Bioethics is happy to talk about advance directives with individuals or groups. Just email us at firstname.lastname@example.org.
Preparing for Hard Decisions
Advance Medical Directives (ADs) are documents that help express your healthcare wishes when you are unable to speak for yourself because you lack decisional capacity. This can happen from a number of different causes and may be temporary, progressive, or permanent. Because of this, you need to think carefully about what you do and do not want under a number of very different kinds of conditions. For example, if you are in a car accident and have trauma to your brain that can lead to a coma (sleep-like incapacity) because your brain has swelled, this may only be temporary. That same accident, however, could cause permanent brain damage, and you could be in what is called a prolonged, even permanent, vegetative state, where you would be unaware of your surroundings and unable to communicate. You could also become demented over time because of diseases like Alzheimer’s. Each of these would put you in a situation where you would be unable to speak for yourself, and if you want healthcare providers to know what to do, it is good to write that down now. Further, writing this all down helps your family because they are relieved of some of the burdens of decision making—a burden we see families struggle with all too often in the hospital.
Two Kinds of Directives
There are two kinds of directives to think about (you can write them in one document if you like): treatment directives and proxy directives.
A treatment directive states what kinds of treatments you would like to have and those you would not, should you be unable to speak for yourself at the time. For example, you may want physicians to perform CPR, but you may not want them to put a tube in you so you can breathe on a ventilator. You may want to be put on a ventilator if there is a reasonable chance that you would not have to be on it forever, but if there is no reasonable chance of that, you may wish to forego the ventilator, even artificial nutrition and hydration.
In order to determine these issues, the best thing to do is to talk with your physician and/or other healthcare professionals. The more you know about what treatments can and cannot do, the benefits and burdens of them, and the kinds of conditions that may or may not warrant their use, the better. Also, you should think about all this yourself and talk with your loved ones (family and/or friends). Treatments are intended to meet your best interests, and so, you need to think about what matters to you—your values, beliefs, interests, and outcomes in relation to healthcare decisions.
A proxy directive states whom you would like to make decisions for you, should you be unable to make them. This person should care about your wellbeing, should know your interests and values in relation to healthcare decisions, and needs to be reasonably available to healthcare providers in order to talk about and make these decisions. Now, the proxy (also known as a surrogate or agent) cannot override your treatment directives, but (a) you may not want to state any specific treatment decisions and even if you do (b) there are a great many decisions that need to be made even if you have a treatment directive. Further, it is good to have a back-up proxy, since having someone available is really important.
Once you do create an AD, you should make copies and share it with your physician, your proxy (and proxy back-up), and anyone else who you think will be supporting your interests. Do not just stuff it in a drawer or lock it in a safe. ADs only work if they are available to healthcare personnel at the time they need them.
Patient Bill of Rights
The UAMS Medical Center is committed to providing quality medical care to every patient. It is our policy to respect your individuality and dignity. See the UAMS Patient’s Bill of Rights.