Typically, the KERA Health Checkup looks at subjects about maintaining your health. But in connection with National Healthcare Decisions Day, we look at advance planning for terminal illness. Sam Baker talked with Dr. Robert Fine of Baylor Medical Center about advance directives.
Dr. Fine: The most common kind of advanced directive is the living will. So for example, I have a living will that tells my family, “Listen. If I’m terminally ill, if my doctors say, ‘We’re really sorry but Bob’s terminally ill now,’ and I can’t speak anymore, that’s how sick I am, my living will says, “I choose to be kept comfortable and allow me to die as gently as possible. Don’t put me on machines in the ICU.”
I could have a living will that says the opposite. Texas law gives us the ability to say, “If I’m terminally ill and can’t speak for myself, stick me on machines in the ICU.”
Baker: A living will is one form of an advanced directive. There are two others?
Dr. Fine: A Medical Power of Attorney is simply a document where the patient appoints somebody else to make decisions for them, but it doesn’t say what those decisions would be. The Out-of-Hospital Do-Not-Resuscitate order is an order that really applies to paramedics. If I had a terminal illness, I would not want them to try to resuscitate me because CPR does not work in the setting of terminal illness. In the hospital a doctor can simply write an order in the chart that says do not attempt resuscitation and the nurses and other doctors with follow that. But if you’re at home, the only thing the paramedics from attempting resuscitation is an Out-of-Hospital DNR.
Baker: When you go into the hospital, aren’t you asked to sign something similar?
Dr. Fine: When you go into the hospital, you are offered the opportunity to create an advanced directive if you don’t have one. You’re asked if you have one, and we try to keep those on file. That’s been a huge challenge in American medicine. In a large study of patients with advanced directives in major American hospitals, it was found that only about a quarter of the time did the hospital know what was in the advanced directive. Often they’re at home, in a shoebox, or they’re in a safe deposit box, so they aren’t where we want them to be.
Baker: So it’s not enough to have one, you have to make it clear to, what, anyone and everyone that you have them?
Dr. Fine: You have to make it clear to them. What hospitals are trying to do now as we move toward electronic medical records is store these documents electronically so they automatically pop back up when the patient checks into the hospital. There are also private companies trying to do this for patients and make it possible to store these advanced directives online.
Baker: What should be in the directive? How complicated does it have to be?
Dr. Fine: Directives can be very simple. One option is simply the Texas advanced directive, which gives patients two fundamental choices, and that choice is, “If I’m terminally or irreversibly ill, do everything you can to keep me going no matter what.” Or, “If I’m terminally or irreversibly ill, stop those aggressive treatments and keep me comfortable.” It all has to start with the doctors certifying this patient is terminally, irreversibly ill.
Baker: Even if you have an advanced directive, who has the ultimate last word – you or the doctor?
Dr. Fine: In Texas law, really the patient does, through their advanced directive – unless they are asking the doctor to do something that the doctor would consider absolutely morally wrong or illegal.
Baker: Can friends or relatives contest the advanced directive? There will always be someone who might say, well, couldn’t we wait one more day, or try one more time?
Dr. Fine: Even in the title of the Texas living will, its very clear that this is the patients directive to their family. Does that mean that families can’t try to contest it? Well, they can, but usually what happens is the doctors say, listen, this is what your loved one wanted, you’re supposed to honor this according to the law. If we don’t honor it we’re subject to licensed review. So if you’re going to challenge it, you’re going to need to go down to court.
Baker: Does an advanced directive have to require money or an attorney?
Dr. Fine: No, not at all. You can download for free the legal document for the state of Texas from a number of web sites, the Texas Hospital Association, the TMA, Baylor Health Care System, on its consumer web site, it makes not only the legal documents freely available, you don’t need a lawyer, you don’t need a notary for these. For those who want maybe a more online experience, mydirectives.com allows you to do all this online. It’s fully comp with Texas law.
Baker: Why don’t most people have an advanced directive?
Dr. Fine: It forces you to imagine, well I won’t be here forever. “Well I don’t like to think that every day. I’d like to think I’ll be here forever even though I know I won’t.” I think that’s the major reason.
Dr. Robert Fine is clinical director of the Office of Clinical Ethics and Palliative Care for Baylor Health Care System. There’s more information on this topic at keranews.org.
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